Physicians being under fire is not new in the Lyme literate world. I discovered this even before my diagnosis. When my husband and I were pursuing answers to this mysterious illness, we uncovered a doctor under investigation in North Carolina on our local news channel. Shortly after my clinical Lyme diagnosis, we watched the documentary Under Our Skin (click to watch on HULU) including a Question & Answer session with the director of the film Andy Abrahams Wilson. The documentary has several cases where Lyme Literate doctors were under fire during the time of filming. This eye opening documentary shows how Lyme Literate doctors are scrutinized by others in the medical community which includes the medical board, insurance companies and other doctors.
Skepticism is the questioning attitude towards knowledge, facts or opinions that are stated as facts. Patients with Lyme Disease and doctors that treat chronic Lyme Disease face another problem in addition to the disease itself. We face chronic skepticism. As a patient, I am often questioned or criticized by the choices I make in regards to my treatments. Physicians and nurses in the traditional medical community often raise their eye brows if I mention the words Lyme Disease. People I know question whether I am choosing the right doctor and treatment because they've heard that Lyme Disease isn't this difficult to treat. My question is this: How come every time I mention that I have Lyme Disease to someone they know someone who "was very sick" or "almost died" from it if Lyme Disease is so rare?
It is such a puzzling phenomena that this illness doesn't seem to exist in the traditional medical community. If doctors don't believe in the chronic form of Lyme Disease, why does the Red Cross have an official statement regarding blood donation? The Red Cross states that they will accept persons with Lyme Disease if they were treated and the disease has been resolved and at least one year has passed. However, those with the Chronic form of Lyme Disease are not eligible to donate (Official Red Cross Source). In addition, there are medical guidelines for joining the national bone marrow registry for Chronic Lyme Disease. Fully recovered Lyme patients may register, but those with Chronic Lyme may not.(Official Bone Marrow Source)
If this chronic disease doesn't exist, then why is it listed that those with
Chronic Lyme Disease can not donate blood or bone marrow? It's common knowledge throughout the Lyme community that those with Lyme Disease should not register for organ donation in regards to transplantation. After intense research I have been unable to find an official statement regarding this; however, it seems to me that if scientists have found bacteria in the blood that is stored for donation (the Red Cross doesn't allow for donation for this reason) then it's shouldn't be a reasonable stretch that those with Chronic Lyme Disease should not donate their organs for risk of transmission. It also seems to me that since our body are riddled with bacteria that it would compromise an already unhealthy individual.
There is a disagreement between two sets of physicians. The physicians that are grouped with the Infectious Diseases Society of America (IDSA) state that Lyme is rare. They suggest that Lyme only exists in the northern area of the United States of America and that Lyme does not need more than 28 days of antibiotics. The physicians associated with the International Lyme and Associated Diseases Society (ILADS) have a vastly different point of view. The doctors are dedicated to the proper diagnosis and appropriate treatment of Lyme and its associated diseases (ILADS Source). Did you realize that one tick bite can give more than one illness? A few of these illnesses are Rocky Mountain Spotted Fever, Babesia and Bartonella, but there are many other tick borne diseases. ILADS support physicians through research and education in order to advance the standard of care for Lyme and other tick borne diseases. The two sides constantly butt heads. One group benefits patients and the other group benefits insurance companies.
The media spotlight of Lyme increases drastically in the spring time due to the rise of public awareness of ticks; however, the media speaks to physicians that have only been taught the basics of Lyme Disease. The media just exposes the theories taught to them by IDSA trained physicians. These are Lyme Disease myths, so to speak. Generally, the public is told that Lyme is tough to get, but easy to treat. They are told that a tick must be attached for several days in order for transmission to occur. They also suggest that each patient with Lyme Disease will get a bulls eye rash. The media doesn't even touch on the fact that the testing for Lyme Disease is inaccurate The media outlets only have limited time to touch on Lyme Disease so the public is left uneducated when it comes to the endemic of the disease.
The news stories on Lyme often infuriates Lyme patients. Media may share an "unusual" story on Lyme, but then in order not to cause widespread panic - they repeat that this is not the usual presentation and Lyme is hard to get and easy to treat. The Lyme community maintains a level of excitement when hearing of mainstream media highlighting tick borne illnesses. However, I always find myself a little leery as a viewer since I am typically disappointed with the lack of appropriate information. They don't inform on other tick borne illnesses. They also leave out recent theories that Lyme may be transmitted much quicker than previously thought, the inaccuracies of the blood tests and the Lyme communities thought that it may be transmitted by other vectors. They rarely speak with true Lyme Literate Medical Doctors who can relay those facts or theories that Lyme patients presume are facts.
The IDSA presents the community with guidelines for different diseases (IDSA Source). The Center for Disease Control (CDC) follows the IDSA guidelines. Insurance companies follow what the CDC thinks. Therefore when doctors think and treat outside the IDSA Lyme Disease box, they are harassed by the traditional medical community. Dr. Jemsek was the first physician I heard about being brought to the medical board regarding his treatment of Lyme Disease. It was all over the news here in North Carolina. Long story short is that Blue Cross Blue Shield (insurance company for those that do not know) did not think his treatments were appropriate for Lyme patients. Unfortunately for his patients, our medical board agreed. He lost his medical practice in North Carolina and subsequently suffered from bankruptcy trying to fight for his right to treat patients who chose his treatments. He moved his medical practice to South Carolina and after a short while he was asked to leave. He currently practices in Washington DC.
The only world renowned pediatric specialist in Lyme Disease, Dr. Jones, is another Lyme doctor under fire. Families come from all over the world to see Dr. Jones because of his mass knowledge of treating children with Lyme Disease. His joy comes from making children better. Yet, Dr. Jones had to fight for his right to treat. Many physicians continue to fight for their right to treat. Some of those had to give up practicing altogether which left their patients in dyer straights. Currently, there is a new physician fighting for his right to treat. This is scary my dear blog readers because, as I view it; the more LLMDs under fire, then the more difficult it is for those doctors that treat Chronic Lyme. Dr. Jaller needs our support. There was a petition going around on the internet, but it closed suddenly and no one else can sign it. I must have signed it just in the nick of time. After "signing," we could leave a note for those that read the petition. My words were this:
"Physicians such as Dr. Jaller
are needed in order to treat Chronic Lyme Disease and other tick borne
illnesses. Too few practitioners are capable of properly diagnosing
these tick borne illnesses. I was personally misdiagnosed for 12 years
before being properly diagnosed in 2007 by a physician trained by ILADS.
Dr. Jaller and Physicians like him should be commended, not
condemned."
Friends, I urge you to support your Lyme Literate Physicians. I encourage you to spread awareness of Lyme Disease. I have never had the opportunity to meet Dr. Jemsek, Dr. Jones or Dr. Jaller, but that doesn't mean their plight is any less important. I also urge you to support each other. We are all under fire all the time. Skeptics are always out there. Share this blog link with your friends.** We should speak together now and I encourage us to speak louder than ever. Our doctors should know they can count on our continued support and our Lyme friends* need to know that we all have their backs. We need each other because there is strength in numbers.
"but those who hope in the LORD will renew their strength. They will soar
on wings like eagles; they will run and not grow weary, they will walk
and not be faint." Isaiah 40:31
*I would like to personally thank all of my Lyme friends that had a hand in helping me in researching and proofreading this article. Thank you so much for your dedication to the Lyme community.
** When you share this link on your blog, let me know via comment so I can visit yours. :o}
*** This was posted on Lyme Aware:
Showing posts with label LLMD. Show all posts
Showing posts with label LLMD. Show all posts
Friday, September 14, 2012
Friday, May 4, 2012
Day 4 of Lyme Disease Awareness Month
It is the fourth day of Lyme Disease Awareness Month.
I forget that there are many acronyms that we use daily that we don't even have to think about, but that those without Lyme or newly Lyme diagnosed won't know. Some of those are LLMD, ILADS and IDSA
LLMD stands for Lyme Literate Medical Doctor.
There are two kinds of doctors that "treat" Lyme. Some are IDSA and some are ILADS. In essence, IDSA doctors don't know the truth about Lyme. ILADS are Lyme gurus that know about Lyme and co-infections (ticks give other things than just Lyme). So if you go see a doctor, you want to make sure that they are ILADS affiliated.
ILADS - International Lyme and Associated Diseases Society
IDSA - I like to "pretend" that it stands for I DON'T SEE ANYTHING or I DON'T SAY ANYTHING, but it actually stands for Infectious Diseases Society of America.
The reason I'm sharing all of these acronyms with you is because I wanted to share with you a video from the most recent ILADS conference where LLMD Dr. Horowitz spoke on a co-infection (one of the other things that Ticks can give) Babesia (also known as Babesiosis). Dr. Horowitz is a top notice Integrative LLMD. He is PRO Lyme Treatment is in one of the best in the nation for treating Lyme Disease. The video is about 11 minutes long and starts off with someone introducing Dr. H. Dr. H speaks french for the first minute or so, but then switches to English.
I hope you enjoy the video and I hope you find it educational.
http://youtu.be/fRBXpOPMxNE
I forget that there are many acronyms that we use daily that we don't even have to think about, but that those without Lyme or newly Lyme diagnosed won't know. Some of those are LLMD, ILADS and IDSA
LLMD stands for Lyme Literate Medical Doctor.
There are two kinds of doctors that "treat" Lyme. Some are IDSA and some are ILADS. In essence, IDSA doctors don't know the truth about Lyme. ILADS are Lyme gurus that know about Lyme and co-infections (ticks give other things than just Lyme). So if you go see a doctor, you want to make sure that they are ILADS affiliated.
ILADS - International Lyme and Associated Diseases Society
IDSA - I like to "pretend" that it stands for I DON'T SEE ANYTHING or I DON'T SAY ANYTHING, but it actually stands for Infectious Diseases Society of America.
The reason I'm sharing all of these acronyms with you is because I wanted to share with you a video from the most recent ILADS conference where LLMD Dr. Horowitz spoke on a co-infection (one of the other things that Ticks can give) Babesia (also known as Babesiosis). Dr. Horowitz is a top notice Integrative LLMD. He is PRO Lyme Treatment is in one of the best in the nation for treating Lyme Disease. The video is about 11 minutes long and starts off with someone introducing Dr. H. Dr. H speaks french for the first minute or so, but then switches to English.
I hope you enjoy the video and I hope you find it educational.
http://youtu.be/fRBXpOPMxNE
Saturday, February 11, 2012
My past week
My week was *curayzee* (crazy). Saturday evening I took my first dose of the detox supplement. I'm supposed to be on this detox supplement for a week before starting the bottle that targets Borrelia. So I opened up the bottle, pulled out the capsule and thought ... there is no way this is doable, but I'll try it. So I pulled out a small container of applesauce and began to pry open the capsule.
Now LDN capsules are hard to open, but this one ... I almost pulled out my husband's pocket knife to cut the sucker in 1/2. So I sprinkle that bad boy (well probably 1/4 of it because that sucker was huge!) in the applesauce and attempt to swallow. Let the gag reflex begin. Ugh. It was terrible. It took 20 minutes to take this ONE capsule. Twenty minutes later I was feeling really nauseated. I stayed nauseated the whole night. The next morning I got up and opened up the bottle. Just the smell knocked me over so I emailed my guru and said, "Look this ain't happening pal, give me the GL version." Okay I didn't say it that way, but bottom line was my guru ordered one in a dropper form so that I could do "one drop" at a time. I picked that up yesterday and started my first dose last night. We'll see. I did the 3 drops and wasn't gagging. WEIRD thing was that I got a rash on my back. I don't know if it's related or not. Probably not, but just a major coincidence.
So the rest of the week. I'm exhausted just thinking about it!
I had my class on Tuesday. I have no idea how I'm doing in that class because we're more than 5 weeks in and we have only received one grade. Hopefully that one grade is indicative of how I'm doing in the rest of the assignments. Turned in the assignment early since I knew I wouldn't be feeling up to it on the rest of the week.
I had my treatments on Wednesday. My LLMD wanted me to get some blood work and I was scheduled for an IV. So, they are kind of enough to always try to get the blood from the IV insertion site so it doesn't take multiple sticks. They look and finally go back to the one in my left hand. This little vein isn't going to hold up much longer. I'd say I don't' know what I'd have to do if I got the IVs more than once a month, but I do know what would happen. I would get another line.
So she inserts it and tries to get blood out. One tube came out "ok," but the second tube started hemolyzing. So they made a rash decision to use the first tube for my "fasting" blood work and go ahead and start my IV. I went back to my chair and warmed up my right arm. I was hoping they would find something and I wouldn't have to come back next week for another try. After warming up for about 20 minutes, she came over and got me. They drew no less than 12 vials. I really don't know how many were up there ... but it seemed like quite a lot. They drew "extra" just in case one vial hemolyzed and they also had to draw two tubes extra to throw away since I was getting an IV during the blood draw. I went in yesterday and they said my blood work was fine -- should get back next week one day. I finished up my IV and on a whim asked if I could get 60 minutes in the HBOT. They approved it and I enjoyed my rest in the chamber. By the time I left the chamber, I had energy. More energy than I've had in a month! Not sure if there was something regarding mixing the IV and the HBOT right after, but I'm telling you ... I felt wonderful!
On Thursday, I had planned an "easy & restful" day. I got my hair done. That was my plan, but ... we also needed to take our "puppy" (aka over 10 years old) to the vet to get rabies vaccination. I asked for Saturday, but they were booked the next two. This was kind of urgent so they squeezed us in on Thursday afternoon so we could just get the one shot. And by us, I mean Dexter & me. Husband was dutifully working. :) We'll take him back in a few weeks to get the rest of the stuff he needs. Then after bringing back the dog, I went to eat dinner with my best friend. Now I'm telling you --- I do not know where I would be if it weren't for this person. I remember a time before he was in my life, but life became significantly better once we were friends.
Friendship is like wine (or so I've been told ... never drank the stuff personally -- tried to once .. spat it out ... yuck) -- it only gets better with age. The best friend isn't the one you go out and do things with all the time. A best friend isn't the one you have the most in common with ... A best friend is the person that you can sit in the car and talk for hours without realizing hours have passed. *oops* I have always said that you should never take your best friend for granted. You just never know what could happen. My Mom recently lost hers. I know it's tough. I thank God every day for sending me mine.
That brings us to yesterday. Yesterday was the day the assignment was due. Can you see how I never would have finished it if I had waited? Don't wait for tomorrow when you can do it today --- Oh don't get me wrong, I'm the queen of procrastination (ask that of the laundry that has been sitting waiting for me for weeks), but that's not the important stuff. Yesterday I called up to the LLMD to find out of my new formula for the supplement had arrived. It had. So I went and picked it up. None of the blood work was back, but I hadn't expected it to be. Our lab called the big lab to make sure my blood was good for testing. It was.
Does anyone remember the day the lightning struck our house? Anyone that knows me knows that I don't spend a whole lot of time in the kitchen, but one day this week I got a hankering for a "shake." So I decided to throw a whole bunch of ingredients together into the blender and blend. I pre-froze yogurt into cubes so I wouldn't have to "just use ice." This took 3 or 4 hours you see. SO by the time I got to the blender part, I was really kind of excited to taste this concoction. I threw in blueberries, a little bit of water, a little bit of vanilla flavored powder and the frozen cubes into the blender. Can you see where this is going? I pressed power. *nothing* The blender stared at me in stunned silence. I thought maybe it wasn't plugged in. So I unplug everything and find the blender cord and plug it in. I press power. *nothing* The blender just stared at me taunting me with my ingredients sitting in it. So, I look at the switch and wonder if something is wrong with it. I reset the switch and try again. *nothing* I move the blender to another switch. Can you say desperate? The blender looks at me and laughs. I scratch my head and say bump it. I pull out a hand mixer ... AN ELECTRICAL HAND MIXER YA'LL and I blend ... and I blend and I blend ... I was desperate for this shake and I wasn't about to go to Wendy's!
So last night, my husband and I go to get a new one, a new blender. Why get a 30 dollar blender when you can get a 130 dollar one?
I'll be blending like a Ninja baby! Okay maybe not, but it works .. and is very sharp. Don't touch it. I won't tell you how I know (ok if you insist ... amazon reviewers). *no injuries of the wife or the husband occurred while making a smoothie, but that smoothie did not taste good .. didn't have any bananas and bananas make a smoothie.
Now LDN capsules are hard to open, but this one ... I almost pulled out my husband's pocket knife to cut the sucker in 1/2. So I sprinkle that bad boy (well probably 1/4 of it because that sucker was huge!) in the applesauce and attempt to swallow. Let the gag reflex begin. Ugh. It was terrible. It took 20 minutes to take this ONE capsule. Twenty minutes later I was feeling really nauseated. I stayed nauseated the whole night. The next morning I got up and opened up the bottle. Just the smell knocked me over so I emailed my guru and said, "Look this ain't happening pal, give me the GL version." Okay I didn't say it that way, but bottom line was my guru ordered one in a dropper form so that I could do "one drop" at a time. I picked that up yesterday and started my first dose last night. We'll see. I did the 3 drops and wasn't gagging. WEIRD thing was that I got a rash on my back. I don't know if it's related or not. Probably not, but just a major coincidence.
So the rest of the week. I'm exhausted just thinking about it!
I had my class on Tuesday. I have no idea how I'm doing in that class because we're more than 5 weeks in and we have only received one grade. Hopefully that one grade is indicative of how I'm doing in the rest of the assignments. Turned in the assignment early since I knew I wouldn't be feeling up to it on the rest of the week.
I had my treatments on Wednesday. My LLMD wanted me to get some blood work and I was scheduled for an IV. So, they are kind of enough to always try to get the blood from the IV insertion site so it doesn't take multiple sticks. They look and finally go back to the one in my left hand. This little vein isn't going to hold up much longer. I'd say I don't' know what I'd have to do if I got the IVs more than once a month, but I do know what would happen. I would get another line.
So she inserts it and tries to get blood out. One tube came out "ok," but the second tube started hemolyzing. So they made a rash decision to use the first tube for my "fasting" blood work and go ahead and start my IV. I went back to my chair and warmed up my right arm. I was hoping they would find something and I wouldn't have to come back next week for another try. After warming up for about 20 minutes, she came over and got me. They drew no less than 12 vials. I really don't know how many were up there ... but it seemed like quite a lot. They drew "extra" just in case one vial hemolyzed and they also had to draw two tubes extra to throw away since I was getting an IV during the blood draw. I went in yesterday and they said my blood work was fine -- should get back next week one day. I finished up my IV and on a whim asked if I could get 60 minutes in the HBOT. They approved it and I enjoyed my rest in the chamber. By the time I left the chamber, I had energy. More energy than I've had in a month! Not sure if there was something regarding mixing the IV and the HBOT right after, but I'm telling you ... I felt wonderful!
On Thursday, I had planned an "easy & restful" day. I got my hair done. That was my plan, but ... we also needed to take our "puppy" (aka over 10 years old) to the vet to get rabies vaccination. I asked for Saturday, but they were booked the next two. This was kind of urgent so they squeezed us in on Thursday afternoon so we could just get the one shot. And by us, I mean Dexter & me. Husband was dutifully working. :) We'll take him back in a few weeks to get the rest of the stuff he needs. Then after bringing back the dog, I went to eat dinner with my best friend. Now I'm telling you --- I do not know where I would be if it weren't for this person. I remember a time before he was in my life, but life became significantly better once we were friends.
Friendship is like wine (or so I've been told ... never drank the stuff personally -- tried to once .. spat it out ... yuck) -- it only gets better with age. The best friend isn't the one you go out and do things with all the time. A best friend isn't the one you have the most in common with ... A best friend is the person that you can sit in the car and talk for hours without realizing hours have passed. *oops* I have always said that you should never take your best friend for granted. You just never know what could happen. My Mom recently lost hers. I know it's tough. I thank God every day for sending me mine.
That brings us to yesterday. Yesterday was the day the assignment was due. Can you see how I never would have finished it if I had waited? Don't wait for tomorrow when you can do it today --- Oh don't get me wrong, I'm the queen of procrastination (ask that of the laundry that has been sitting waiting for me for weeks), but that's not the important stuff. Yesterday I called up to the LLMD to find out of my new formula for the supplement had arrived. It had. So I went and picked it up. None of the blood work was back, but I hadn't expected it to be. Our lab called the big lab to make sure my blood was good for testing. It was.
Does anyone remember the day the lightning struck our house? Anyone that knows me knows that I don't spend a whole lot of time in the kitchen, but one day this week I got a hankering for a "shake." So I decided to throw a whole bunch of ingredients together into the blender and blend. I pre-froze yogurt into cubes so I wouldn't have to "just use ice." This took 3 or 4 hours you see. SO by the time I got to the blender part, I was really kind of excited to taste this concoction. I threw in blueberries, a little bit of water, a little bit of vanilla flavored powder and the frozen cubes into the blender. Can you see where this is going? I pressed power. *nothing* The blender stared at me in stunned silence. I thought maybe it wasn't plugged in. So I unplug everything and find the blender cord and plug it in. I press power. *nothing* The blender just stared at me taunting me with my ingredients sitting in it. So, I look at the switch and wonder if something is wrong with it. I reset the switch and try again. *nothing* I move the blender to another switch. Can you say desperate? The blender looks at me and laughs. I scratch my head and say bump it. I pull out a hand mixer ... AN ELECTRICAL HAND MIXER YA'LL and I blend ... and I blend and I blend ... I was desperate for this shake and I wasn't about to go to Wendy's!
So last night, my husband and I go to get a new one, a new blender. Why get a 30 dollar blender when you can get a 130 dollar one?
I'll be blending like a Ninja baby! Okay maybe not, but it works .. and is very sharp. Don't touch it. I won't tell you how I know (ok if you insist ... amazon reviewers). *no injuries of the wife or the husband occurred while making a smoothie, but that smoothie did not taste good .. didn't have any bananas and bananas make a smoothie.
Tuesday, December 20, 2011
The Adventures of the non-working Lymie
Oh my word. The past few days have seriously been filled to the brim. Kind of sad the only way I'll get to sit is by getting an IV and HBOT!
So a couple of months ago I told my husband, "I smell something funny in the car." It would come & go in waves. Sometimes it smelled terrible and sometimes it smelled kind of sweet. We were sure it was anti-freeze. Then the last time he changed my oil, he heard my car making this knocking sound. Sign number 2 something is wrong. He finally put all the puzzle pieces together and inspected my car and decided the water pump is ready to blow. So yesterday, I spent it calling Toyota - making appointment and driving it up there to be worked on today.
Also yesterday I spent the morning on the phone trying to fix another problem. They called to say my husband had an appointment today, well first it was ME that had the appointment today and secondly he doesn't have an appointment until the 27th. I explain this. They say, "no, it's him that has the appointment." Uh no, it's me. Then they say that he doesn't have an appt at all on the 27th. Good thing I have the paperwork shows that he does have an appt on the 27th. ;)
So today my appt is at 10:30. Well because my car is in the shop, Rob gets to drive me there at 8:30. So I get to mosey around the doc's office for 2 hours. good thing they love me! I brought DVD's out the wazoo and food too. Even a game of Uno if there's anyone that feels up to a game. Then afterwards, another Lymie will drive me to my car. Yeah I'll be at my LLMD's today forever. 8 to 4. IV & HBOT.
Maybe I'll get to rest tomorrow. My great friend and former boss from college is retiring tomorrow. I would love to go see her retire, but because of the 10 hour drive both ways I sent a letter instead. They will read it at her party. She will cry I'm sure of it.
Signing out cause I got to get dressed and head out for my really long day!
So a couple of months ago I told my husband, "I smell something funny in the car." It would come & go in waves. Sometimes it smelled terrible and sometimes it smelled kind of sweet. We were sure it was anti-freeze. Then the last time he changed my oil, he heard my car making this knocking sound. Sign number 2 something is wrong. He finally put all the puzzle pieces together and inspected my car and decided the water pump is ready to blow. So yesterday, I spent it calling Toyota - making appointment and driving it up there to be worked on today.
Also yesterday I spent the morning on the phone trying to fix another problem. They called to say my husband had an appointment today, well first it was ME that had the appointment today and secondly he doesn't have an appointment until the 27th. I explain this. They say, "no, it's him that has the appointment." Uh no, it's me. Then they say that he doesn't have an appt at all on the 27th. Good thing I have the paperwork shows that he does have an appt on the 27th. ;)
So today my appt is at 10:30. Well because my car is in the shop, Rob gets to drive me there at 8:30. So I get to mosey around the doc's office for 2 hours. good thing they love me! I brought DVD's out the wazoo and food too. Even a game of Uno if there's anyone that feels up to a game. Then afterwards, another Lymie will drive me to my car. Yeah I'll be at my LLMD's today forever. 8 to 4. IV & HBOT.
Maybe I'll get to rest tomorrow. My great friend and former boss from college is retiring tomorrow. I would love to go see her retire, but because of the 10 hour drive both ways I sent a letter instead. They will read it at her party. She will cry I'm sure of it.
Signing out cause I got to get dressed and head out for my really long day!
Saturday, December 3, 2011
Yes Virginia, there is Lyme Disease
I saw my Lyme Doctor today. Have I said lately how much I love him? In a few months, we'll have been seeing each other for FIVE years. In that time, he's been to FIVE ILADS conferences. He told me at this recent conference he learned about the study that was done regarding a mouse and the Lyme bacteria. I'm not sure that I understood entirely correctly, but I do know that the time part is accurate. Something was put into the borrelia bacteria to make it glow so they could see it in the mouse. And that they could see the glowing bacteria go into the mouse and that within 30 minutes the bacteria was in the blood and that within 6 hours it was out of the blood and into the tissues of the body.
I said to him, "That's COOL and TERRIFYING at the same time." It's cool that they were able to show that, but terrifying because within SIX hours of attachment it can already be out of the blood stream and into the tissues! No wonder it's difficult to diagnose with blood tests! He studies with other Lyme doctors and between the two of us we always come up with treatment plans that can work for me. He listens. He understands. He asks questions. He's awesome. I refer as many people as I can to him I believe he's that good. Lyme is not a simple race. It's a marathon. More appropriately, it should be dubbed a triathlon with the emphasis on "tri."
Yes, my relapse is in full effect. What's next for me? Antibiotics? IV's? IM shots? More HBOT? Well I'm not exactly sure that antibiotics aren't in my future. In fact, if I had to take a stab at it ... I'm almost positive that unless something changes between now & February, I will probably be in the very least pulsing antibiotics.
IV's ~ not talking about Antibiotic IV's here though I suppose it's not out of the question. However I prefer a more natural route. IV High Doses of Vitamin C. If I could afford it and my veins were better, I would get a couple a week for a couple of months. However, I can't really afford it and I would rather not get another PICC unless absolutely necessary. Though, it it becomes necessary ~ it is an option.
IM shots? Well looks like to assist my fatigue problem, b12 shots are going to be my friend. I've done many things ... given myself a shot hasn't been one of them. Let's just add it to the list of things Dr. P has convinced me to do in order to improve my quality of health. So as soon as they come in, I'll be giving myself (or convince Rob to do it) a shot.
HBOT? It has seriously improved things already. So I will continue them with the frequency of one per week. I've already spent a grand total of 23 hours in the machine. It has made me feel less anxious, angry, and overall emotional. It has improved my headaches significantly. It has made my breathing less labored and less painful.
I also have an announcement to make in the next couple of weeks. And before anyone thinks it, no I'm not pregnant. It's an announcement that very few people know and I don't want it out in "public" until I have told the people it's going to impact in person first. I would rather them hear it from me than read it on my blog first or have someone else read it and call them. So once the people that absolutely must know know, I will share with everyone here.
** just so I don't forget, I wanted to add in that during my appointment yesterday I almost fell asleep. If I hadn't been fighting it so hard, I would have fallen asleep. I'm surprised I even remember anything from the appointment. Partially through my husband's appointment (his was right after mine), I had to get up to go to the IV room just to lie down. I couldn't sit up any more. **
I said to him, "That's COOL and TERRIFYING at the same time." It's cool that they were able to show that, but terrifying because within SIX hours of attachment it can already be out of the blood stream and into the tissues! No wonder it's difficult to diagnose with blood tests! He studies with other Lyme doctors and between the two of us we always come up with treatment plans that can work for me. He listens. He understands. He asks questions. He's awesome. I refer as many people as I can to him I believe he's that good. Lyme is not a simple race. It's a marathon. More appropriately, it should be dubbed a triathlon with the emphasis on "tri."
Yes, my relapse is in full effect. What's next for me? Antibiotics? IV's? IM shots? More HBOT? Well I'm not exactly sure that antibiotics aren't in my future. In fact, if I had to take a stab at it ... I'm almost positive that unless something changes between now & February, I will probably be in the very least pulsing antibiotics.
IV's ~ not talking about Antibiotic IV's here though I suppose it's not out of the question. However I prefer a more natural route. IV High Doses of Vitamin C. If I could afford it and my veins were better, I would get a couple a week for a couple of months. However, I can't really afford it and I would rather not get another PICC unless absolutely necessary. Though, it it becomes necessary ~ it is an option.
IM shots? Well looks like to assist my fatigue problem, b12 shots are going to be my friend. I've done many things ... given myself a shot hasn't been one of them. Let's just add it to the list of things Dr. P has convinced me to do in order to improve my quality of health. So as soon as they come in, I'll be giving myself (or convince Rob to do it) a shot.
HBOT? It has seriously improved things already. So I will continue them with the frequency of one per week. I've already spent a grand total of 23 hours in the machine. It has made me feel less anxious, angry, and overall emotional. It has improved my headaches significantly. It has made my breathing less labored and less painful.
I also have an announcement to make in the next couple of weeks. And before anyone thinks it, no I'm not pregnant. It's an announcement that very few people know and I don't want it out in "public" until I have told the people it's going to impact in person first. I would rather them hear it from me than read it on my blog first or have someone else read it and call them. So once the people that absolutely must know know, I will share with everyone here.
** just so I don't forget, I wanted to add in that during my appointment yesterday I almost fell asleep. If I hadn't been fighting it so hard, I would have fallen asleep. I'm surprised I even remember anything from the appointment. Partially through my husband's appointment (his was right after mine), I had to get up to go to the IV room just to lie down. I couldn't sit up any more. **
Saturday, October 1, 2011
Feeling Discouraged
My LLMD appointment was today.
I'm Feeling Discouraged, but Encouraged if that makes sense at all.
I'm too tired to explain right now.
Explain more tomorrow.
Please pray. Thanks.
I'm Feeling Discouraged, but Encouraged if that makes sense at all.
I'm too tired to explain right now.
Explain more tomorrow.
Please pray. Thanks.
Friday, September 23, 2011
Saturday Events
For so long, Saturdays were my "rest up" days. I never planned anything on a Saturday because it was simply the day I used to rest up after forcing myself to work all week. So I think that I will start to post the things I do on Saturdays now that I'm in "remission."
Originally I had planned to head about 3 hours out of town to hang out with a college friend and his future wife. They are having a party for the wedding, but I have been having some allergy problems so I thought it might be wiser to stay closer to home just in case I have problems over the weekend. The past week every evening I've either taken Claritin or Zyrtec and every morning I've taken Quercetin (it's a natural antihistimine).
So it calls for a change of plans.
First, I'm going to hang with one of my closest Lyme friends. She won the raffle from the Lyme Lunch and she wasn't able to attend. So I offered to bring her what she won. We'll hang out for a couple of hours and then I'll go to a mall that I rarely go to. I need to look for some fall tops and possibly some pants. Because I've gained weight since last fall/winter, none of my clothes fit. In fact, a lot of my shirts are too small even. So, off to the stores I must go. I don't mind shopping, but it is disheartening to try on 25 pair of pants and only find 1 pair that fit right (yes that happened one day this past week). Then I'll come home.
I hope to finish up that huge laundry pile that has been growing by the day in the morning before I leave for my friend's house. We'll see. I have to go Zyrtec myself up now (I'm trying to NOT get sick in September -- If I manage to keep the allergies away, then I'll manage to keep the Bronchitis/Pneumonia away!!!!). Actually woke up with no sore throat today and very little coughing! This is a sign of good things. My body might be fighting it off without antibiotics! Crossing my fingers on that one. I have my LLMD the following Saturday. The reason we chose 3 months instead of 6 months is because I always get sick in September. Knock on wood. It's day 23 and I've managed to stave off an infection. :}
Originally I had planned to head about 3 hours out of town to hang out with a college friend and his future wife. They are having a party for the wedding, but I have been having some allergy problems so I thought it might be wiser to stay closer to home just in case I have problems over the weekend. The past week every evening I've either taken Claritin or Zyrtec and every morning I've taken Quercetin (it's a natural antihistimine).
So it calls for a change of plans.
First, I'm going to hang with one of my closest Lyme friends. She won the raffle from the Lyme Lunch and she wasn't able to attend. So I offered to bring her what she won. We'll hang out for a couple of hours and then I'll go to a mall that I rarely go to. I need to look for some fall tops and possibly some pants. Because I've gained weight since last fall/winter, none of my clothes fit. In fact, a lot of my shirts are too small even. So, off to the stores I must go. I don't mind shopping, but it is disheartening to try on 25 pair of pants and only find 1 pair that fit right (yes that happened one day this past week). Then I'll come home.
I hope to finish up that huge laundry pile that has been growing by the day in the morning before I leave for my friend's house. We'll see. I have to go Zyrtec myself up now (I'm trying to NOT get sick in September -- If I manage to keep the allergies away, then I'll manage to keep the Bronchitis/Pneumonia away!!!!). Actually woke up with no sore throat today and very little coughing! This is a sign of good things. My body might be fighting it off without antibiotics! Crossing my fingers on that one. I have my LLMD the following Saturday. The reason we chose 3 months instead of 6 months is because I always get sick in September. Knock on wood. It's day 23 and I've managed to stave off an infection. :}
Thursday, July 28, 2011
Diagnostic Codes
Earlier today I was looking at the Diagnostic Codes listed on my Lab work paper for tomorrow. I will be going in to get my "Grab & Jab" which will lead to the "hit and miss." Anyways, I saw these diagnostic codes and wondered what they were.
Thank goodness that Google is my friend
780.79 = Other Malaise & Fatigue.
625.4 = Premenstrual tension syndromes
280.0 = Iron deficiency anemia secondary to blood loss (chronic)
288.0 = Agranulocytosis
According to Medline Plus, "Agranulocytosis means a failure of the bone marrow to make enough white blood cells (neutrophils). Bone marrow is the soft tissue inside bones that helps form blood cells."
Medlineplus also says, "Agranulocytosis results in a person not having enough of a specific type of white blood cells, called neutrophils or granulocytes. A low neutrophil count (neutropenia) may also occur when white blood cells are destroyed faster than they can be produced."
People with this condition are more likely to get infections. So in order to insure that Lyme doesn't rear it's ugly head (since it IS a bacterial infection), we have to keep a check on my blood cells. I've had a problem with my cell counts in the past so my LLMD likes to keep a check on them. This is also something that the LDN should have helped.
Cross your fingers that the Grab & Jab goes well.
Thank goodness that Google is my friend
780.79 = Other Malaise & Fatigue.
625.4 = Premenstrual tension syndromes
280.0 = Iron deficiency anemia secondary to blood loss (chronic)
288.0 = Agranulocytosis
According to Medline Plus, "Agranulocytosis means a failure of the bone marrow to make enough white blood cells (neutrophils). Bone marrow is the soft tissue inside bones that helps form blood cells."
Medlineplus also says, "Agranulocytosis results in a person not having enough of a specific type of white blood cells, called neutrophils or granulocytes. A low neutrophil count (neutropenia) may also occur when white blood cells are destroyed faster than they can be produced."
People with this condition are more likely to get infections. So in order to insure that Lyme doesn't rear it's ugly head (since it IS a bacterial infection), we have to keep a check on my blood cells. I've had a problem with my cell counts in the past so my LLMD likes to keep a check on them. This is also something that the LDN should have helped.
Cross your fingers that the Grab & Jab goes well.
Wednesday, July 27, 2011
LDN Cream
At my most recent LLMD appointment, we discussed what we have been talking about since August of 2009. I wrote a post then (click here to go to that post) Explaining LDN. He started me off at 4.5mg, but I had some really lousy side effects at 4.5mg. Those side effects included a severe lack of sleep, profoundly disturbing dreams, severe headaches, excessive jaw pain and fatigue. When this didn't improve, he recommended that I start off at only 1mg and increase as I adjusted to it. All of 2010, I had difficultly getting past 1mg and I eventually stopped trying. In May of 2011, I decided that I would really try to get up to 3mg. Things went okay and I actually did get up to 3mg.
So when I went to my LLMD, I explained to him that I had done really well. He was rather impressed that I had pushed myself. Then he told me something that I wish I had known before now. LDN can be compounded into a CREAM! The cream comes in syringes. There are 3ml of cream in each syringe and 10 syringes come in a 30 day supply. For a typical Lyme patient, they would use 1ml of cream per night. Well with my sensitivity, we're going to start off with 1/2 ml of cream. This is about the equivalent of 2.25mg of LDN. If things go well this entire month, then I can slowly increase until I get to the full 1 ml of cream.
Here are 9 of the 10 syringes next to my cell phone (an appropriate Lime Green!) to show size.
I push the syringe so that 1/2 ml out onto my arm. The instructions say to rub it onto soft skin. The pharmacist recommended the soft side of the arm between the elbow and wrist. I have decided to alternate the arms, though I don't think it's necessarily required. I have used it for three nights so far. In addition to the LDN cream, we discussed my difficulty sleeping lately. So he sent me home with some Melatonin hoping that it would help me sleep.
On the first night, I had no problems sleeping. I slept the entire night without waking. I did have dreams, but they weren't enough to wake me. On the second night, I woke once. I woke up and was extremely thirsty and hot. So I had to get up for some water and to turn the air cooler. Once I was settled with those things, I was easily able to go back to sleep. I was exhausted when my alarm went off however. Last night, I slept like a rock. I fell asleep at 7:45pm and didn't wake until 5am when my alarm sounded.
I get my blood work done on Monday and I'm hoping that all this work I've done since May will show up.
So when I went to my LLMD, I explained to him that I had done really well. He was rather impressed that I had pushed myself. Then he told me something that I wish I had known before now. LDN can be compounded into a CREAM! The cream comes in syringes. There are 3ml of cream in each syringe and 10 syringes come in a 30 day supply. For a typical Lyme patient, they would use 1ml of cream per night. Well with my sensitivity, we're going to start off with 1/2 ml of cream. This is about the equivalent of 2.25mg of LDN. If things go well this entire month, then I can slowly increase until I get to the full 1 ml of cream.
Here are 9 of the 10 syringes next to my cell phone (an appropriate Lime Green!) to show size.
I push the syringe so that 1/2 ml out onto my arm. The instructions say to rub it onto soft skin. The pharmacist recommended the soft side of the arm between the elbow and wrist. I have decided to alternate the arms, though I don't think it's necessarily required. I have used it for three nights so far. In addition to the LDN cream, we discussed my difficulty sleeping lately. So he sent me home with some Melatonin hoping that it would help me sleep.
On the first night, I had no problems sleeping. I slept the entire night without waking. I did have dreams, but they weren't enough to wake me. On the second night, I woke once. I woke up and was extremely thirsty and hot. So I had to get up for some water and to turn the air cooler. Once I was settled with those things, I was easily able to go back to sleep. I was exhausted when my alarm went off however. Last night, I slept like a rock. I fell asleep at 7:45pm and didn't wake until 5am when my alarm sounded.
I get my blood work done on Monday and I'm hoping that all this work I've done since May will show up.
Thursday, June 2, 2011
Finally ... a note on procrastination
Procrastination ---
Finally doing something in July that should have been done in February. That my dear blog readers is .. Procrastination at its finest!
Today I did two things I have been taking my sweet time doing.
First, I made my follow up appointment for my LLMD.
Second, I called in a refill for my LDN.
I'm hoping that by then, I'll be up to 3mg! My LLMD will be jumping through the roof if I can do this. I had no idea it could be done and now .. I'm so close! 2.25 ... that's only .75mg away! If I go the way I've been going, I'll be there in 2.5 weeks!
See what procrastinating got me? I couldn't have done this 6 months ago. :)
Finally doing something in July that should have been done in February. That my dear blog readers is .. Procrastination at its finest!
Today I did two things I have been taking my sweet time doing.
First, I made my follow up appointment for my LLMD.
Second, I called in a refill for my LDN.
I'm hoping that by then, I'll be up to 3mg! My LLMD will be jumping through the roof if I can do this. I had no idea it could be done and now .. I'm so close! 2.25 ... that's only .75mg away! If I go the way I've been going, I'll be there in 2.5 weeks!
See what procrastinating got me? I couldn't have done this 6 months ago. :)
Saturday, June 5, 2010
6-5-2010 Update
So to start, we discussed my poor reaction to the 1mg of LDN. Then we talked about how I had been feeling since January. I told him how shocked I was that my blood tests were so poor when I felt so wonderfully normal when they were drawn. He too seemed shocked that my test results were so low. All of the low things concerned him, but the thing that was extremely worrysome was that in addition to having low platelets and hemoglobin my typically normal White Blood Cells were flirting with the low normal line. In addition, even though I was on oral Iron capsules and Vitamin D drops, both of those were also low.
Based on my labs in march, there is a chance that I am actively bleeding somewhere in my body. He said more than likely it's in the GI area. However, I do not have any symptoms of a GI bleed. There is no stomach pain, back pain, diarrhea or obviously bloody stools. He also said that it's odd that someone so young would have this kind of problem. The only thing that gives him the idea is that my blood levels are so low. So he sent me on up to Lab Corp to have the labs redone.
While we were discussing the possible active bleeding, we also talked about my low iron levels. In layman's terms, there is no need to replenish a gas tank with gas if that tank has a hole in it. In other words if there is an active bleed, no need to waste perfectly good money by putting in intravenous iron because it will just come out again. So we wait for a few days to find out the results of my lab work.
If the test comes back similar to the results in March, then I'll have a second test. Second test is a little gross, but simply put they will be testing to see if my BM's have blood in them. If Lab work is Bad and the Stool test has blood, then I'll be going to see a Gastroenterologist to see what is going on. If the sample shows no blood (and my labs are improved), then I will start IV iron since my levels are overtly low in order to replenish my iron and it should improve my hemoglobin levels as well.
Since my Natural Killer Cells are also low, I am at severe risk of the Lyme Disease pouncing back and I could be back to square one. The biggest problem I see with that is that the treatment that helped me the most is no longer available for my usage. So we must get my Natural Killer Cells back in the normal range in order for me to continue fighting Lyme Disease. LDN is my option for doing that. So I will be taking LDN slow and steady. We're talking really slowly.
I will begin by using only 1/2 of the capsule every other day. Then I will move to taking 1/2 capsule 2 days off one and then 3 days off one and so on and so forth until I am on 1/2 capsule 7 days with no problems. Then I'll move on to 1mg 1 night, 1/2 caps for 2 nights. We'll do this until I can reach a therapeutic dose (hopefully we'll reach the 4.5 mg). In the meantime, I'll be using another supplement in addition to the really low dose of LDN. In addition to this, I'm increasing my Vitamin D drops from 10,000 units per day to 20,000 units per day.
All of this is a lot to digest since I have been feeling so well this year. I'm just praying that my blood today looks better than March. Unless something drastic happens (like what happened this week), I'll be going back in July for another check of Ferritin, Vitamin D and CBC blood work before my follow up in August. If my tests from this past Saturday are okay, I'll be starting IV iron as soon as possible so that I can complete my iron IV's before my blood work in July.
Based on my labs in march, there is a chance that I am actively bleeding somewhere in my body. He said more than likely it's in the GI area. However, I do not have any symptoms of a GI bleed. There is no stomach pain, back pain, diarrhea or obviously bloody stools. He also said that it's odd that someone so young would have this kind of problem. The only thing that gives him the idea is that my blood levels are so low. So he sent me on up to Lab Corp to have the labs redone.
While we were discussing the possible active bleeding, we also talked about my low iron levels. In layman's terms, there is no need to replenish a gas tank with gas if that tank has a hole in it. In other words if there is an active bleed, no need to waste perfectly good money by putting in intravenous iron because it will just come out again. So we wait for a few days to find out the results of my lab work.
If the test comes back similar to the results in March, then I'll have a second test. Second test is a little gross, but simply put they will be testing to see if my BM's have blood in them. If Lab work is Bad and the Stool test has blood, then I'll be going to see a Gastroenterologist to see what is going on. If the sample shows no blood (and my labs are improved), then I will start IV iron since my levels are overtly low in order to replenish my iron and it should improve my hemoglobin levels as well.
Since my Natural Killer Cells are also low, I am at severe risk of the Lyme Disease pouncing back and I could be back to square one. The biggest problem I see with that is that the treatment that helped me the most is no longer available for my usage. So we must get my Natural Killer Cells back in the normal range in order for me to continue fighting Lyme Disease. LDN is my option for doing that. So I will be taking LDN slow and steady. We're talking really slowly.
I will begin by using only 1/2 of the capsule every other day. Then I will move to taking 1/2 capsule 2 days off one and then 3 days off one and so on and so forth until I am on 1/2 capsule 7 days with no problems. Then I'll move on to 1mg 1 night, 1/2 caps for 2 nights. We'll do this until I can reach a therapeutic dose (hopefully we'll reach the 4.5 mg). In the meantime, I'll be using another supplement in addition to the really low dose of LDN. In addition to this, I'm increasing my Vitamin D drops from 10,000 units per day to 20,000 units per day.
All of this is a lot to digest since I have been feeling so well this year. I'm just praying that my blood today looks better than March. Unless something drastic happens (like what happened this week), I'll be going back in July for another check of Ferritin, Vitamin D and CBC blood work before my follow up in August. If my tests from this past Saturday are okay, I'll be starting IV iron as soon as possible so that I can complete my iron IV's before my blood work in July.
Monday, March 1, 2010
Happy 3rd Anniversary
When I walked (barely) into my new doctor's office 3 years ago today, I had no idea what was going to happen. Honestly, I was anxious that this doctor would be a let down. I feared that he would say exactly what every other doctor had said the past 12 years. It was all in my head. I left out of his office (three years ago today) with hope.
Thirteen months ago I was taking these: (and that wasn't all of them ... and it doesn't include the IV's that I was on until February 2009)
I am amazed and how much better I feel than I did even a year ago.
***
It's amazing how far Integrative Medicine has brought me in THREE YEARS. I could barely stay awake and it hurt to walk. The symptoms I had were too numerous to name, but let me try:
Profound Fatigue
Severe Headaches
Fevers on some days and extreme Low Temperature on the next.
Extremity Weakness
Tingling of my hands and feet
stiff neck
difficulty swallowing
light, sound, smell sensitivity
dizziness and fainting
ringing ears and stuffed ears making it difficult to hear
history of seizures
difficulty sleeping b/c of pain
memory problems
word finding problems
decreased concentration
personality changes
spots in my vision
pain in my eyes
blurriness
rashes (EM Rash & other minor rashes)
fluttery heart
Joint Pain (most of my joints)
Muscle Pain (mainly my legs and arms)
Nausea
Vomiting
Diarrhea
Intense and rapid weight loss
And then the opposite happened .. rapid weight gain
Muscle Twitches
Extreme Sweating at night
I know there are others, but I can't think right now because it was so long ago.
I gave my doctor a book and in the book there was a quote about how "believing is ninety percent of doing." I am so glad he believe in me. I am so glad I believed in him.
Thirteen months ago I was taking these: (and that wasn't all of them ... and it doesn't include the IV's that I was on until February 2009)
I am amazed and how much better I feel than I did even a year ago.
***
It's amazing how far Integrative Medicine has brought me in THREE YEARS. I could barely stay awake and it hurt to walk. The symptoms I had were too numerous to name, but let me try:
Profound Fatigue
Severe Headaches
Fevers on some days and extreme Low Temperature on the next.
Extremity Weakness
Tingling of my hands and feet
stiff neck
difficulty swallowing
light, sound, smell sensitivity
dizziness and fainting
ringing ears and stuffed ears making it difficult to hear
history of seizures
difficulty sleeping b/c of pain
memory problems
word finding problems
decreased concentration
personality changes
spots in my vision
pain in my eyes
blurriness
rashes (EM Rash & other minor rashes)
fluttery heart
Joint Pain (most of my joints)
Muscle Pain (mainly my legs and arms)
Nausea
Vomiting
Diarrhea
Intense and rapid weight loss
And then the opposite happened .. rapid weight gain
Muscle Twitches
Extreme Sweating at night
I know there are others, but I can't think right now because it was so long ago.
I gave my doctor a book and in the book there was a quote about how "believing is ninety percent of doing." I am so glad he believe in me. I am so glad I believed in him.
Saturday, January 9, 2010
Saturday, October 10, 2009
Follow up 10/10/09
August was my worst month this year. It was absolutely horrendous. I compare it to months that I had in 2008. I had exhaustion, headaches, word finding problems, memory problems, joint pain in hands & legs, balance issues, nausea and twitches in my legs. These problems lasted about 2 weeks of the month, but they were the worst two weeks I've had this year.
September gave me exhaustion, poor stamina, joint pain and swelling. I also had unexplained histamine reactions resulting in swollen eye lids. October has proven to be tough with the bout of Bronchitis. I walk into my LLMD's office with knowledge.
The good news is that each bad spell I had ended on it's own. I fought back with my "strong" immune system and the symptoms disappeared (excluding the Bronchitis). In August, we ran a bunch of urine and blood tests. I received the results of these tests today and what they mean for my treatment.
My sodium level is borderline low again. This means I have to add sodium into my diet yet again. My iron is better than he expected, but was still borderline low. My vitamin D is extremely low. Zinc was also overtly low. In the urine testing, it showed that I have low glutathione, and low B6. I also had a nutrient test done. The three things that were overtly low were Zinc, Magnesium and Selenium. It also showed borderline low levels of B12, inositol, Vitamin A, Copper, Chromium, Vitamin E and Vitamin C (which is absolutely astounding considering how many Grams of Vitamin C I take in a day).
He would provide me with "good news" to be followed by the "bad news." "Well, your metal test was within normal range." (YEAH) "Your Zinc levels are overtly low." (BOOO)
You may ask why are so many minerals defiecent. I can answer this. EDTA (not only to help with metals, but also to help with biofilms) not only binds to metals, but it binds to minerals. Therefore depleting my mineral supply. We were aware of this problem prior to the blood test and I was given Trace Minerals. However, Trace Minerals make me so nauseated that I can't take them. So he's going to give me specific minerals that I need. So I will be taking Vitamin D, Magnesium, Zinc, Selinium and a B6 complex. However because I have a sensitive system, I may not be able to tolerate them. If I can't tolerate these, I have been advised to get IV minerals.
The urine testing also showed high level of yeast. So therefore I will begin a regiment of Diflucan. We're going to hit it hard and take 4 full weeks of Diflucan. I will then take one week off and then take another 4 full weeks. I won't go on any new supplement until I'm off the antibiotics. However, I will start the Diflucan as soon as I get the prescription filled.
September gave me exhaustion, poor stamina, joint pain and swelling. I also had unexplained histamine reactions resulting in swollen eye lids. October has proven to be tough with the bout of Bronchitis. I walk into my LLMD's office with knowledge.
The good news is that each bad spell I had ended on it's own. I fought back with my "strong" immune system and the symptoms disappeared (excluding the Bronchitis). In August, we ran a bunch of urine and blood tests. I received the results of these tests today and what they mean for my treatment.
My sodium level is borderline low again. This means I have to add sodium into my diet yet again. My iron is better than he expected, but was still borderline low. My vitamin D is extremely low. Zinc was also overtly low. In the urine testing, it showed that I have low glutathione, and low B6. I also had a nutrient test done. The three things that were overtly low were Zinc, Magnesium and Selenium. It also showed borderline low levels of B12, inositol, Vitamin A, Copper, Chromium, Vitamin E and Vitamin C (which is absolutely astounding considering how many Grams of Vitamin C I take in a day).
He would provide me with "good news" to be followed by the "bad news." "Well, your metal test was within normal range." (YEAH) "Your Zinc levels are overtly low." (BOOO)
You may ask why are so many minerals defiecent. I can answer this. EDTA (not only to help with metals, but also to help with biofilms) not only binds to metals, but it binds to minerals. Therefore depleting my mineral supply. We were aware of this problem prior to the blood test and I was given Trace Minerals. However, Trace Minerals make me so nauseated that I can't take them. So he's going to give me specific minerals that I need. So I will be taking Vitamin D, Magnesium, Zinc, Selinium and a B6 complex. However because I have a sensitive system, I may not be able to tolerate them. If I can't tolerate these, I have been advised to get IV minerals.
The urine testing also showed high level of yeast. So therefore I will begin a regiment of Diflucan. We're going to hit it hard and take 4 full weeks of Diflucan. I will then take one week off and then take another 4 full weeks. I won't go on any new supplement until I'm off the antibiotics. However, I will start the Diflucan as soon as I get the prescription filled.
Tuesday, October 6, 2009
Bronchitis Update
I'm still coughing up a storm. I stopped by my LLMD's office this afternoon. After speaking with my nurse, I plunkered in my "favorite chair." She plunkered down right in front of me with needle in hand. After two tries, she got the IV inserted and the drip began. First IV I've had since February and the first time I've had an IV insertion since July of 08.
After the 2 and 1/2 hours of IV (which is a nutritional IV consisting of 50 grams of Vitamin C plus some other nutrients), my nurse informed me that my LLMD does want me to go on the antibiotic. So ... here we go again. Hopefully this time ... ONE antibiotic for TEN days (instead of FOUR antibiotics for over a YEAR).
All of my other s ymptoms are pretty much gone except the horrible cough. It's been a while since I've been a fly on the wall at my LLMD's office. I forgot how very busy my LLMD is. He was busier than an one legged man in a butt kicking contest. He was running from patient to patient trying to hear what the office staff and nurses were telling him about other patients in between visits.
Today was a crazy day. I know it's about to get crazier for him. I'm sure he'll get patients that would have gone to Dr. J in South Carolina, but don't want to wait for his transition to DC or even drive to DC.
I see him on Saturday for my follow up. Hopefully I'm feeling a lot better. I got my test results today. I am not looking forward to the appointment either b.c some things didn't look good.
After the 2 and 1/2 hours of IV (which is a nutritional IV consisting of 50 grams of Vitamin C plus some other nutrients), my nurse informed me that my LLMD does want me to go on the antibiotic. So ... here we go again. Hopefully this time ... ONE antibiotic for TEN days (instead of FOUR antibiotics for over a YEAR).
All of my other s ymptoms are pretty much gone except the horrible cough. It's been a while since I've been a fly on the wall at my LLMD's office. I forgot how very busy my LLMD is. He was busier than an one legged man in a butt kicking contest. He was running from patient to patient trying to hear what the office staff and nurses were telling him about other patients in between visits.
Today was a crazy day. I know it's about to get crazier for him. I'm sure he'll get patients that would have gone to Dr. J in South Carolina, but don't want to wait for his transition to DC or even drive to DC.
I see him on Saturday for my follow up. Hopefully I'm feeling a lot better. I got my test results today. I am not looking forward to the appointment either b.c some things didn't look good.
Saturday, September 26, 2009
Prayers for a special LLMD
A few days ago, I heard about the most amazing Dr. J in South Carolina. I didn't hear about "him" because I've known of him for years. This amazing doctor was practicing in North Carolina. I had the opportunity to choose him, but I decided to against the popular Lyme physician and go with a lesser known doctor because of all the legal trouble's Dr. J was in at the time.
Upon exiting the state of North Carolina, he met with the SC big wigs in the medical community and had their support. However, their support has dwindled in the last two years and he is no longer welcome. He has made the decision to move his practice to DC. I believe that most of his patients are informed of this decision. So based on this information, I ask for you to pray not only for him during his move, but also for his patients that have moved from his practice from NC to SC and now to DC.
I wondered about all of this and was already praying for all of these things when I heard the rest of the news. Two or three (and this is all hearsay about the time line) weeks ago, Dr. J found out that his lovely wife had breast cancer. I am not sure about the specifics of her breast cancer, but my MIL is a breast cancer survivor. Please pray that Dr. J's wife can become a survivor as well. This is such a tricky disease with stages and spreading and I am not sure what stage his wife is in or if it's spread to other areas.
As if this wasn't quite a lot on Dr. J's plate, a week after he found out about his wife ... they learned that their 5 year old daughter has Leukemia. Please pray for Dr. J, his wife and his daughter as they undergo treatments. It is a scary situation for all involved. The saying is that God won't give you anything you can't handle. Dr. J has proven already that he is one tough doctor and man. He has helped the AIDS & Lyme community greatly. I imagine this will also give him the power to not only fight these two communities, but he will also bring his greatness to fight for cancer patients as well.
Sp please please pray for Dr. J, his family and all of the Lyme community (and in addition to all cancer patients and survivors and families).
Upon exiting the state of North Carolina, he met with the SC big wigs in the medical community and had their support. However, their support has dwindled in the last two years and he is no longer welcome. He has made the decision to move his practice to DC. I believe that most of his patients are informed of this decision. So based on this information, I ask for you to pray not only for him during his move, but also for his patients that have moved from his practice from NC to SC and now to DC.
I wondered about all of this and was already praying for all of these things when I heard the rest of the news. Two or three (and this is all hearsay about the time line) weeks ago, Dr. J found out that his lovely wife had breast cancer. I am not sure about the specifics of her breast cancer, but my MIL is a breast cancer survivor. Please pray that Dr. J's wife can become a survivor as well. This is such a tricky disease with stages and spreading and I am not sure what stage his wife is in or if it's spread to other areas.
As if this wasn't quite a lot on Dr. J's plate, a week after he found out about his wife ... they learned that their 5 year old daughter has Leukemia. Please pray for Dr. J, his wife and his daughter as they undergo treatments. It is a scary situation for all involved. The saying is that God won't give you anything you can't handle. Dr. J has proven already that he is one tough doctor and man. He has helped the AIDS & Lyme community greatly. I imagine this will also give him the power to not only fight these two communities, but he will also bring his greatness to fight for cancer patients as well.
Sp please please pray for Dr. J, his family and all of the Lyme community (and in addition to all cancer patients and survivors and families).
Sunday, August 30, 2009
Quiet Month of August
Here are some synonyms for the word quiet:
"buttoned up, clammed up, close-mouthed, could hear a pin drop, hushed, inaudible, low-pitched, muffled, muted, noiseless, not saying boo, peaceful, quieted, reserved, secretive, silent, soft, soundless, speechless, stilled, tight-lipped, uncommunicative, unexpressed, nonspeaking, and whist."
I feel like this month, I have been reserved and uncommunicative. The bad days in August outweighed the good. That is extremely upsetting for me as I have had pretty good months since February. My husband had his appointment yesterday and we have two different views on how it went. I left feeling pretty rotten about the whole appointment and he left uplifted. Just goes to show you how different we are. Let's just make it succinct to say that he will be getting 6 IV's which will hopefully take care of a deficiency he has.
The good of the IV's will be that he *should* get more energy and it should bring up some nutritional levels that are really low. Since he's never had an IV before, our nurses should have no problems getting a vein. That will be very beneficial for him. The bad of the IV's is that we are finally *almost* out of the woods with my debts because of the things we've had to do financially. In September, he'll have 4 IV's. In October, he'll have 2 IV's and we'll both have follow ups. This doesn't include the financial burden of all new supplements for both of us. He says we'll make it and I just get really nervous and "clammed up." The other bad part is that these will take 4 hours out of his Saturdays. Fortunately my doctor's office is open on Saturdays, but who wants to spend their Saturday's at the doctors. Not to mention, these IV's are similiar to ones that I received at the beginning of my treatment. I know what they did to me and I fear they will do the same to him. I was able to be awake enough to drive home, but as soon as I got home I fell asleep for hours. They gave me tremendous headaches and he's already got those with the new medicine for Candida.
Speaking of Candida, He's already feeling the effects of Candida Treatment and he's talking about things I talked about 2 years ago. I think we found the bulk of his problem. Not Lyme, but Yeast. I won't even go to all the Cardiac problems we think (know) he has. It's too scary to think about. The good news is that he's lost many pounds of weight since his last visit. We're headed towards the right direction.
Now on to me: I have yet to start my LDN and I just get so nervous when I start new things. I need to just suck it up and take it, but the fear of the unknown has had me stalling for the last week and a half. I got one part of my blood work back and 3 of the numbers are out of range and 3 of the numbers are close to out of range. I have a fear that this means he'll want some IV work again on me. Two of us on IV's at the same time? There is NO WAY. I fear what the other blood work will show, but am grateful that they were able to show me the things that have come back.
So when do we go back?
The hubby goes back the first Saturday after Labor Day and goes for 6 Saturdays. On his 5th Saturday, I have my follow up appointment. On his 6th Saturday, I have my follow up appointment. I speculate we will both have bloods after that and then go back in 6 to 8 weeks unless we both are in need of IV's still at that point.
And PICC is a 4 letter word that I don't ever want to see again. Neither is PORT. The doctor says "IV" and those are the two four letter words that come straight to my mind. Well you might ask, "Well you've not had a PICC since February and prior to that no IV insertions since July of 08, why would it automatically mean PICC? Aren't your veins healing?" Well let me tell you a lil story.
A bit after my PICC was removed, they drew blood. You would think that after 7 months of no IV insertions or no regular blood draws that this would be a simple task. Uh no it wasn't. It was absolutely one of the worst experiences that I've had thus far. That was in February of this year. Fast Forward to August 19th. Keep in mind, I hadn't had an IV stick in over a year and I had only had blood drawn ONE time in over a year. The other times were through my PICC line.
I prepare for the blood draw by drinking LOTS of water. I see the Phlebotnist and warn her that I can be quite difficult to stick. Now in the last 3 years, I have yet to meet a Phlebotnist that could get me on the first stick. So I had high expectations of my dear friend who had never had the pleasure of drawing blood from me because only a qualified nurse can draw blood out of a PICC. She promised me it would be simple and easy and that the 13 vials of blood would be a piece of cake!
Because I have passed out in the past and I knew that I had passed out on a "simple" 8 vial draw, I requested to go to my old PICC room so that I could lie down if necessary. She gets things set up and says "Oh there is a beautiful vein." I do my breathing when the lady jabs me so hard that I felt my ears pulsing. She says she got it and starts filling the tubes. The whole time I'm praying, "keep flowing blood .. keep flowing" because I know what happens every time.
The blood always stops after 3/4 of a vial and then they have to jiggle the needle to squeeze blood out of turnip and it always turns into .. "Oh I have to pull this one and try again." Uh yeah it happened again. Two of them were pulling and prodding my arm trying to get the blood to come out, but in the end they pulled the needle and were ready to start again. I told them to go on to the next easy stick and come back to me later. They left me with my heating pad and water. The RN (whom I absolutely love) came back and said she'd work on finding the right vein for the blood draw. We worked together and finally found one.
After an hour, I finally left. Now I still have a small bruise on my arm where they manhandled me to try to get blood. SO you can see why when they say IV .. I think PICC.
"buttoned up, clammed up, close-mouthed, could hear a pin drop, hushed, inaudible, low-pitched, muffled, muted, noiseless, not saying boo, peaceful, quieted, reserved, secretive, silent, soft, soundless, speechless, stilled, tight-lipped, uncommunicative, unexpressed, nonspeaking, and whist."
I feel like this month, I have been reserved and uncommunicative. The bad days in August outweighed the good. That is extremely upsetting for me as I have had pretty good months since February. My husband had his appointment yesterday and we have two different views on how it went. I left feeling pretty rotten about the whole appointment and he left uplifted. Just goes to show you how different we are. Let's just make it succinct to say that he will be getting 6 IV's which will hopefully take care of a deficiency he has.
The good of the IV's will be that he *should* get more energy and it should bring up some nutritional levels that are really low. Since he's never had an IV before, our nurses should have no problems getting a vein. That will be very beneficial for him. The bad of the IV's is that we are finally *almost* out of the woods with my debts because of the things we've had to do financially. In September, he'll have 4 IV's. In October, he'll have 2 IV's and we'll both have follow ups. This doesn't include the financial burden of all new supplements for both of us. He says we'll make it and I just get really nervous and "clammed up." The other bad part is that these will take 4 hours out of his Saturdays. Fortunately my doctor's office is open on Saturdays, but who wants to spend their Saturday's at the doctors. Not to mention, these IV's are similiar to ones that I received at the beginning of my treatment. I know what they did to me and I fear they will do the same to him. I was able to be awake enough to drive home, but as soon as I got home I fell asleep for hours. They gave me tremendous headaches and he's already got those with the new medicine for Candida.
Speaking of Candida, He's already feeling the effects of Candida Treatment and he's talking about things I talked about 2 years ago. I think we found the bulk of his problem. Not Lyme, but Yeast. I won't even go to all the Cardiac problems we think (know) he has. It's too scary to think about. The good news is that he's lost many pounds of weight since his last visit. We're headed towards the right direction.
Now on to me: I have yet to start my LDN and I just get so nervous when I start new things. I need to just suck it up and take it, but the fear of the unknown has had me stalling for the last week and a half. I got one part of my blood work back and 3 of the numbers are out of range and 3 of the numbers are close to out of range. I have a fear that this means he'll want some IV work again on me. Two of us on IV's at the same time? There is NO WAY. I fear what the other blood work will show, but am grateful that they were able to show me the things that have come back.
So when do we go back?
The hubby goes back the first Saturday after Labor Day and goes for 6 Saturdays. On his 5th Saturday, I have my follow up appointment. On his 6th Saturday, I have my follow up appointment. I speculate we will both have bloods after that and then go back in 6 to 8 weeks unless we both are in need of IV's still at that point.
And PICC is a 4 letter word that I don't ever want to see again. Neither is PORT. The doctor says "IV" and those are the two four letter words that come straight to my mind. Well you might ask, "Well you've not had a PICC since February and prior to that no IV insertions since July of 08, why would it automatically mean PICC? Aren't your veins healing?" Well let me tell you a lil story.
A bit after my PICC was removed, they drew blood. You would think that after 7 months of no IV insertions or no regular blood draws that this would be a simple task. Uh no it wasn't. It was absolutely one of the worst experiences that I've had thus far. That was in February of this year. Fast Forward to August 19th. Keep in mind, I hadn't had an IV stick in over a year and I had only had blood drawn ONE time in over a year. The other times were through my PICC line.
I prepare for the blood draw by drinking LOTS of water. I see the Phlebotnist and warn her that I can be quite difficult to stick. Now in the last 3 years, I have yet to meet a Phlebotnist that could get me on the first stick. So I had high expectations of my dear friend who had never had the pleasure of drawing blood from me because only a qualified nurse can draw blood out of a PICC. She promised me it would be simple and easy and that the 13 vials of blood would be a piece of cake!
Because I have passed out in the past and I knew that I had passed out on a "simple" 8 vial draw, I requested to go to my old PICC room so that I could lie down if necessary. She gets things set up and says "Oh there is a beautiful vein." I do my breathing when the lady jabs me so hard that I felt my ears pulsing. She says she got it and starts filling the tubes. The whole time I'm praying, "keep flowing blood .. keep flowing" because I know what happens every time.
The blood always stops after 3/4 of a vial and then they have to jiggle the needle to squeeze blood out of turnip and it always turns into .. "Oh I have to pull this one and try again." Uh yeah it happened again. Two of them were pulling and prodding my arm trying to get the blood to come out, but in the end they pulled the needle and were ready to start again. I told them to go on to the next easy stick and come back to me later. They left me with my heating pad and water. The RN (whom I absolutely love) came back and said she'd work on finding the right vein for the blood draw. We worked together and finally found one.
After an hour, I finally left. Now I still have a small bruise on my arm where they manhandled me to try to get blood. SO you can see why when they say IV .. I think PICC.
Saturday, August 8, 2009
Follow Up Appointment
I would suggest that most Lyme patients have other "issues" that can cause symptoms to arise. These other things for me are Nutrient Deficiencies, Adrenal Weakness, Low Normal Natural Killer Cells, Heavy Metal Toxicity, parasites and potentially low iron.
When I got to my LLMD the first time, we discussed the markers for Lyme Disease. I had joint pain in unspecified areas (it jumped around), fatigue & malaise, sleep disturbance, memory loss,
history of tick bite with bulls eye rash and a positive response to antibiotics. In February of this year, I got a CDC positive test result in the IgeneX Western Blot IgM. In the next two weeks, I will be having another test to see how LabCorp views my Lyme tests. The state of North Carolina only thinks that you have Lyme Disease IF a "normal" lab pings positive results. They also want the results within 30 days of the lab AND I seem to recall that they prefer both IgM and IgG to be CDC positive. So I'm crossing fingers that my LabCorp test will ping a positive result.
I've been taking an enzyme called Nattoserrazime. It's a blend of two potent enzymes which is used for cardiovascular, anti-inflammatory, respiratory and immune support. The benefit to this is that it supposedly helps ward off bacterial infections and supports immune health. I am also on EDTA. EDTA binds to metals in the body and helps you get rid of them. It binds to even good minerals so in order to ensure that it's not taking out too many good minerals I will have to be taking a "Trace Minerals." However, I have to make sure that I take it far enough away from the EDTA or it will just be wasted money (IE it will bind to the Trace Mineral and take IT out of my body instead of any heavy metals). I will also be taking Curcumin (Ker Kume In). It's believed to also have an anti-inflammatory and antioxidant effects. It may stimulate the immune system as well. Lastly on the Lyme front, I will be taking Paracide Juglans. This stuff is NASTY! I don't know exactly what it does, but I do know that it also helps kill parasites.
Because of all of the above, I will be having a nutritional panel taken the same day as the Lyme test. EDTA will be a 2 month supplement. Parasides will end as soon as I finish the bottle (*yeah*). Since the beginning of my treatment, my adrenal cortisol levels have been consistantly going down. This is NOT good. So they will test my cortisol levels to see where they are and I will continue addrenal support.
Last time I was tested, my Natural Killer cells were in the low end of normal. I am to order something called Low Dose Naltrexone. Originally Naltrexone was invented to help drug and alcohol addicts. Well it became clear that it seemed to help immune functions and a while back a doctor studied this and realized that in a very small dose ~ it helped improve immune functions quite a bit. Low Dose Naltrexone has been used successfully in Cancer and HIV/AIDS patients and more recently they've been using it on those with bacterial infections (like Lyme Disease). I would be taking 4.5 MG of this LDN at bedtime to help raise my natural killer cells. (I believe that the dose they use for addicts if 50 mg .. so you can see it's truly a very low dose).
Because my Chelation proved that I had some heavy metals, I will be having a test to see if it has caused any damage. This test will be done about the same time as my blood work. We're also going to really check out my Ferritin levels because some symptoms I've been having the last few weeks have been indicative of Low Iron levels. I will start Iron supplements as soon as my blood test has been completed.
On my supplement list:
Nattoserrazyme
Adrenal Cortex
Cod Liver Oil
Curcumin
EDTA (total of 2 months)
Immuzyme
Liver Drainage
Methyl B12
Total B
Vitamin C
Paracide (finish bottle)
Ultraflora
Iron Plex
Trace Minerals
I have more, but those are on my list sent home today!
Tests coming up: (August 19)
CBC
Comprehensive Metabolic Panel
Cortisol
Ferritin
Natural Killer Cells
Lipid Panel
Parathyroid
Vitamin D (25)
Zinc Plasma
CD 57
Lyme IgG and IgM
Several types of Urine testing.
Spectracell Nutrient Testing
When I got to my LLMD the first time, we discussed the markers for Lyme Disease. I had joint pain in unspecified areas (it jumped around), fatigue & malaise, sleep disturbance, memory loss,
history of tick bite with bulls eye rash and a positive response to antibiotics. In February of this year, I got a CDC positive test result in the IgeneX Western Blot IgM. In the next two weeks, I will be having another test to see how LabCorp views my Lyme tests. The state of North Carolina only thinks that you have Lyme Disease IF a "normal" lab pings positive results. They also want the results within 30 days of the lab AND I seem to recall that they prefer both IgM and IgG to be CDC positive. So I'm crossing fingers that my LabCorp test will ping a positive result.
I've been taking an enzyme called Nattoserrazime. It's a blend of two potent enzymes which is used for cardiovascular, anti-inflammatory, respiratory and immune support. The benefit to this is that it supposedly helps ward off bacterial infections and supports immune health. I am also on EDTA. EDTA binds to metals in the body and helps you get rid of them. It binds to even good minerals so in order to ensure that it's not taking out too many good minerals I will have to be taking a "Trace Minerals." However, I have to make sure that I take it far enough away from the EDTA or it will just be wasted money (IE it will bind to the Trace Mineral and take IT out of my body instead of any heavy metals). I will also be taking Curcumin (Ker Kume In). It's believed to also have an anti-inflammatory and antioxidant effects. It may stimulate the immune system as well. Lastly on the Lyme front, I will be taking Paracide Juglans. This stuff is NASTY! I don't know exactly what it does, but I do know that it also helps kill parasites.
Because of all of the above, I will be having a nutritional panel taken the same day as the Lyme test. EDTA will be a 2 month supplement. Parasides will end as soon as I finish the bottle (*yeah*). Since the beginning of my treatment, my adrenal cortisol levels have been consistantly going down. This is NOT good. So they will test my cortisol levels to see where they are and I will continue addrenal support.
Last time I was tested, my Natural Killer cells were in the low end of normal. I am to order something called Low Dose Naltrexone. Originally Naltrexone was invented to help drug and alcohol addicts. Well it became clear that it seemed to help immune functions and a while back a doctor studied this and realized that in a very small dose ~ it helped improve immune functions quite a bit. Low Dose Naltrexone has been used successfully in Cancer and HIV/AIDS patients and more recently they've been using it on those with bacterial infections (like Lyme Disease). I would be taking 4.5 MG of this LDN at bedtime to help raise my natural killer cells. (I believe that the dose they use for addicts if 50 mg .. so you can see it's truly a very low dose).
Because my Chelation proved that I had some heavy metals, I will be having a test to see if it has caused any damage. This test will be done about the same time as my blood work. We're also going to really check out my Ferritin levels because some symptoms I've been having the last few weeks have been indicative of Low Iron levels. I will start Iron supplements as soon as my blood test has been completed.
On my supplement list:
Nattoserrazyme
Adrenal Cortex
Cod Liver Oil
Curcumin
EDTA (total of 2 months)
Immuzyme
Liver Drainage
Methyl B12
Total B
Vitamin C
Paracide (finish bottle)
Ultraflora
Iron Plex
Trace Minerals
I have more, but those are on my list sent home today!
Tests coming up: (August 19)
CBC
Comprehensive Metabolic Panel
Cortisol
Ferritin
Natural Killer Cells
Lipid Panel
Parathyroid
Vitamin D (25)
Zinc Plasma
CD 57
Lyme IgG and IgM
Several types of Urine testing.
Spectracell Nutrient Testing
Saturday, July 25, 2009
Rob's LLMD appointment
It's today! We leave at 9:45 to arrive at 10:15 (how fortunate are we to have such a close LLMD?). His appointment begins at 10:30 and suspect will run until noon or so. I'm not sure how much time they have slated for him. Majority of the time, the first office visits are with his nurse, but I specifically requested that we go ahead and start off with our LLMD since he knows Rob's situation already during my appointments. Rob's already had the microscope test too and my doctor was sitting in during part of that.
So pray that I get through this day without major tear production. It's scary knowing we're about to embark on another very expensive adventure and hopefully we'll be able to handle this. We just had to "handle" the last bit of my medical bills by doing something drastic. Since selling our vehicles isn't an option (we've had the truck on the market for the last 6 months without so much as an offer), we decided to let the credit union buy it back. So now we're back to monthly payments on the truck.
Not to talk to much about the financial end of things because that is not why I created this blog, but the debt was overwhelming. We were paying in interest on our credit card each month about 300 dollars. By letting the credit union buy our car so we could buy it back, we will be able to pay off most of the credit card (and by next month the balance will be ZERO!!!!! Praise God for having such a smart husband who knew such thing could be done), we will probably save a ton each month even if you add in the car payment.
So we're back to Zero and now we're starting the beginning treatment for Rob. I just want to say WAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH. Hopefully his treatment won't be anywhere near the expense that mine was. If it is, so help us. God will Provide ... I just don't know where it will come from. The last time we needed God to provide, he provided it in the form of NC WAGES check. NC Legislature how now removed that from Smart Start Funding.
With all the changes at work lately, I've had to repeat the following ...
When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something else. ~ Author Unknown
So pray that I get through this day without major tear production. It's scary knowing we're about to embark on another very expensive adventure and hopefully we'll be able to handle this. We just had to "handle" the last bit of my medical bills by doing something drastic. Since selling our vehicles isn't an option (we've had the truck on the market for the last 6 months without so much as an offer), we decided to let the credit union buy it back. So now we're back to monthly payments on the truck.
Not to talk to much about the financial end of things because that is not why I created this blog, but the debt was overwhelming. We were paying in interest on our credit card each month about 300 dollars. By letting the credit union buy our car so we could buy it back, we will be able to pay off most of the credit card (and by next month the balance will be ZERO!!!!! Praise God for having such a smart husband who knew such thing could be done), we will probably save a ton each month even if you add in the car payment.
So we're back to Zero and now we're starting the beginning treatment for Rob. I just want to say WAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH. Hopefully his treatment won't be anywhere near the expense that mine was. If it is, so help us. God will Provide ... I just don't know where it will come from. The last time we needed God to provide, he provided it in the form of NC WAGES check. NC Legislature how now removed that from Smart Start Funding.
With all the changes at work lately, I've had to repeat the following ...
When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something else. ~ Author Unknown
Sunday, June 14, 2009
Recurring Nightmare
Ever have a dream that you're teeth are falling out?
Ever have a dream that you're falling?
Ever have a dream that you've gone to work/school naked?
Ever have a dream that you're being chased?
Ever have a dream that you're drowning?
Ever have a dream that you're failing a test?
A recurring dream is a dream which is experienced repeatedly over a long period. If you've had any of those dreams up above multiple times, you are not alone. I have had them too. If they occurred in *real* life, they might cause pain or embarrassment or even death. I mean what are the chances you'd actually go to work or school naked? Slim to none. (If you're a lymie, you're more likely to do this: Take a bath with your underclothes on accidentally of course) All of your teeth fall out? Again Slim to None. Fall to your death from tall heights? Slim to None. Being chased through an alley? Doubtful, especially if you steer clear from alleys. Drown? Fail a test? Okay those two are more likely.
Most recurring dreams I have aren't especially likely. However, my most recent recurring nightmare could very well happen. It's happened to others so why couldn't it happen to me. The thought of losing my Lyme Doctor to political garbage is very real. That's why when I have the dream four times in a two week span ... I begin to wonder whether it is coming true. It scares me more than any non-Lyme patient can ever know. Until you walk a mile in a Lymie's shoe, you will never know what this fear is like. You don't GET Lyme until you GET Lyme. This dream has woken me up from deep slumber.
I don't think I've ever shared with my readers that I have a "gift." I used to think this "gift" was a "nightmare" in itself. I tend to dream about things that happen in the future. It may not be that the entire "event" happens, but just parts. Let me give a few examples. One time I had a dream that a very close friend of mine was pregnant. Not only was she pregnant, but she suffered an incredible loss in this pregnancy. It woke me up in a panic. I felt horrible for not only dreaming of the pregnancy, but of the loss. I was terrified it was true. So in order to calm my fears, I called this friend only to find out that she had just gotten back from the hospital. I was horrified.
Another time I dreamed about an organ transplant that fell through. The very next day one of my blogger friends got "the call" and it was a "dry run." (meaning that the transplant fell through). The good part was that shortly later I had another dream ... only this time it didn't fall through. Guess what happened next? The day after, she received the call again and then she received her double lungs.
Want more? I have plenty that are just like this. Dreams about the Fire Marshall showing up to work and the next day the Fire Marshall showed up. Dreams about a sudden death of a friend and a few weeks later a friend suddenly dies. Dreams about all sorts of things. I found out a few years ago that one of my cousins has the same "gift." How weird is that ... *very* His parents thought his was weird ... I guess secretly I must have thought my parents would think the same thing. I never told them. In fact, my guess is they are finding about this gift along with all of you ... right now!
My dreams are so scarily accurate that I have begun warning certain people of some of my dreams. Some are downright ridiculous and I know would never happen. Like my boss getting arrested .... Yeah if that actually does happen, I think I'm going to call Maura Povich or something. (I can't believe no one called me out on the typo ... Maura Povich .. MAURY Povich)
So you all can imagine why my nightmare is a little scary. It's not like other LLMD's offices haven't been completely shut down ... :o( Such a sad thing for the Lyme community. Hopefully I can fall back to sleep in a gentle slumber and rest until it's time to get up. Maybe I better warn my boss about her impending impoundment! :P
Ever have a dream that you're falling?
Ever have a dream that you've gone to work/school naked?
Ever have a dream that you're being chased?
Ever have a dream that you're drowning?
Ever have a dream that you're failing a test?
A recurring dream is a dream which is experienced repeatedly over a long period. If you've had any of those dreams up above multiple times, you are not alone. I have had them too. If they occurred in *real* life, they might cause pain or embarrassment or even death. I mean what are the chances you'd actually go to work or school naked? Slim to none. (If you're a lymie, you're more likely to do this: Take a bath with your underclothes on accidentally of course) All of your teeth fall out? Again Slim to None. Fall to your death from tall heights? Slim to None. Being chased through an alley? Doubtful, especially if you steer clear from alleys. Drown? Fail a test? Okay those two are more likely.
Most recurring dreams I have aren't especially likely. However, my most recent recurring nightmare could very well happen. It's happened to others so why couldn't it happen to me. The thought of losing my Lyme Doctor to political garbage is very real. That's why when I have the dream four times in a two week span ... I begin to wonder whether it is coming true. It scares me more than any non-Lyme patient can ever know. Until you walk a mile in a Lymie's shoe, you will never know what this fear is like. You don't GET Lyme until you GET Lyme. This dream has woken me up from deep slumber.
I don't think I've ever shared with my readers that I have a "gift." I used to think this "gift" was a "nightmare" in itself. I tend to dream about things that happen in the future. It may not be that the entire "event" happens, but just parts. Let me give a few examples. One time I had a dream that a very close friend of mine was pregnant. Not only was she pregnant, but she suffered an incredible loss in this pregnancy. It woke me up in a panic. I felt horrible for not only dreaming of the pregnancy, but of the loss. I was terrified it was true. So in order to calm my fears, I called this friend only to find out that she had just gotten back from the hospital. I was horrified.
Another time I dreamed about an organ transplant that fell through. The very next day one of my blogger friends got "the call" and it was a "dry run." (meaning that the transplant fell through). The good part was that shortly later I had another dream ... only this time it didn't fall through. Guess what happened next? The day after, she received the call again and then she received her double lungs.
Want more? I have plenty that are just like this. Dreams about the Fire Marshall showing up to work and the next day the Fire Marshall showed up. Dreams about a sudden death of a friend and a few weeks later a friend suddenly dies. Dreams about all sorts of things. I found out a few years ago that one of my cousins has the same "gift." How weird is that ... *very* His parents thought his was weird ... I guess secretly I must have thought my parents would think the same thing. I never told them. In fact, my guess is they are finding about this gift along with all of you ... right now!
My dreams are so scarily accurate that I have begun warning certain people of some of my dreams. Some are downright ridiculous and I know would never happen. Like my boss getting arrested .... Yeah if that actually does happen, I think I'm going to call Maura Povich or something. (I can't believe no one called me out on the typo ... Maura Povich .. MAURY Povich)
So you all can imagine why my nightmare is a little scary. It's not like other LLMD's offices haven't been completely shut down ... :o( Such a sad thing for the Lyme community. Hopefully I can fall back to sleep in a gentle slumber and rest until it's time to get up. Maybe I better warn my boss about her impending impoundment! :P
Subscribe to:
Posts (Atom)
