Possible Lyme Firsts For Me

I was diagnosed 5 years, 1 month and 4 days ago. I have tried many things including some conventional medicine and very unconventional medicine. I have had a PICC line. I have had many firsts.

Today I sat on my LLMD's loveseat and listened to him talk about the two well known LLMD's he has visited since my last visit with him in February. He talked about the homeopathic treatments and oral antibiotics that I have tried. We talked about how they made me feel. We talked about my symptoms, past and present. We talked about things he really hasn't done that many times and I thought about how often I jump on the train of things he hasn't really tried. I thought about how I really am my LLMD's little guinea pig. We have seen things that have worked (but aren't allowed anymore and that really makes me angry) and things that haven't worked at all.

My immediate plan is to give myself a 3 to 4 day break off of all the homeopathic medicines I have been taking to see if my body will improve. If it does improve, I will start over. I have three vials of homeopathic medicines. I will start with the first vial (targets Lyme). I will start off with 6 drops twice a day and increase everyday until I get to 20 to 25 drops twice a day. Then at this point, I'll start on the second vial that targets Bartonella. I will do the same thing with it and then lastly start the vial that targets Babesia. This could all change once my LLMD speaks with the creator of these vials. He wants to talk with her and find out her opinion on my case.

The past few times we have talked about oral antibiotics and I think my LLMD wants to try this route again seriously. My stomach churns just thinking about it. We think based on my symptoms that I have untreated Babesia. Until recently, Babesia had not even been on our radars. However, he learned a lot more about Babesia during his visits to New York with the other two LLMD's. So with this information comes a possibility of new firsts.

In order to target Babesia, there are several medicines that are used. I have heard about all three possibilities and my stomach turns just to think of it. The one my doctor would probably use (we talked about it at length) is known in the Lyme community as "yellow paint." The medical community calls it Mepron. The other antibiotic would be Zithromax. I have had Zithromax, but I have never endured the yellow paint.

In addition to this, he wants me to consider other lyme antibiotics as well. We're thinking about Ceftin, Rifampin ("orange urine") and then Grape Seed Extract. However, ultimately he wants to consider something I never thought I would hear him say.

IV ROCEPHIN.

I'm processing. I have a couple of phrases that I use almost daily. The first one is, "It is what it is." There is nothing I can do about it. I have Lyme and it is what it is. The second one is, "Go big or go home."

The following words scare me: Mepron, IV Rocephin, Rifampin, Ceftin, Grape See Extract. All of these would be firsts for me.

It is what it is.
Go big or go home.

Of course I have to wait for my LLMD to decide, but ultimately it is my decision. There are benefits to both treatment courses. Both treatment courses are expensive. Both treatment courses have their downfalls. I don't know what I want to do yet, but I do know that I trust my LLMD.

Here is the truth, the gut wrenching truth. I must admit I am scared, but I have learned a thing or two in the past five years. In order to see the beautiful rainbow, you must go through the rain. People always ask how I can stay so positive with everything I have gone through. I try not to let others see my weakness, my negativity. I am not 100% positive 100% of the time, but I do try to bring the joy to others. I say bring it. Bring the joy. Bring the pain. Bring the Lyme and Bring the rain.

Praise you in this storm: Casting Crowns.

Update

So I was pretty sick over night. Yesterday I fought to stay at work. Probably paid the price last night. I was doing pretty well, but decided on a whim to take some Night Time Delsym. Figured it would help me sleep and keep the coughing at bay over night. So I took the dose around 8pm. Around midnight, I woke up burning up. I thought that I had turned up my electric blanket so I checked it. It was OFF. Apparently I was so hot that I turned it off in my sleep. There are 10 levels on my blanket and I generally sleep with it on level 3 or 4. Sometimes hotter and sometimes cooler, but mostly 4. So I was shocked when it was OFF.

I decided to check my temperature and was a little stunned when I saw it say 100.5. I decided to wait 30 minutes to recheck and as I laid there ... I got hotter and hotter. When I rechecked it hit the 102 mark. I decided it was time to go ahead and take Tylenol. I went ahead and got a bottled water and Tylenol thinking that soon I'd be able to go back to sleep. Well by 2am, my temperature had reached a shocking 103.5. I stumbled into the kitchen to get a cool wet cloth for my body. I knew I had to take care of that fever quickly, but I can't take Motrin. Motrin makes my eyes swell up. It may help with the fever, but the last time I took Motrin I wound up at the Urgent Care getting a Steroid Shot.

I argued with myself over whether to use the Motrin or not and in the end decided that I would hold off. I continued to check. At 3:30am, it was 104.6. At this point I was pretty much out of it trying to sip water. Throughout all of this, I talked out loud to God. I knew He was with me. I knew He wouldn't give me more than I could handle. I remember asking for him to take away the fever. Somewhere around 4, I essentially passed out and woke at 5am when my alarm went off. I felt the coolness of the sweat and knew my fever broke.

Needless to say, I will be starting those antibiotics because I haven't gotten any better and all the factors my doctor said to watch out for started. I'm so glad to be alive. I'm so glad to be alive. Praise God I'm still alive.

No Herxing!!!

So one thing that is a little frightening for a Lyme patient (post major treatment) is to be treated with an antibiotic. I guess I can't say this for all Lyme patients, but for me ... I worry that there will be a Herx reaction. This is the reaction that occurs when large amounts of toxins are released into the body as bacteria die during antibiotic treatment. I've pretty much avoided anything stronger than Amoxil since my Lyme treatment. In fact, I've pretty much even avoided it by taking IV Vitamin C when I felt it was getting close to antibiotic time.

I've had both a Penicillin type medicine and a Macrolide and ... guess what folks ... no herx reaction! I've had a little pain in my back, but the pain could be attributed to how much I've been coughing. This sure beats the "Oh My, I'm about ready to die from all these bacteria dying" feeling. I really feel that I have this sucker beat. I mean sure I have a weak immune system due to this sucker and sure there are many other things going on in my body thanks to dear old Lyme ... BUT the fact that I am not herxing during antibiotic treatment for Bronchitis ... means that I am in fact, getting better!

(even though I'm still coughing up a lung or two due to the Bronchitis)

Today is the last day of antibiotic. Hopefully, I'll start feeling better. I should know by Wednesday if Zithromax took care of it or not.

Sick Check In

Remember when I said, '"Well if it "may" cause drowsiness, it might as well say "WILL" cause "sleep for 1/2 day."'


Well last night I started having some eye itching and swelling. It happens (more often than I care to admit). So I decided to take the Delsym Night Time cough syrup with antihistamine. Well the typical adult dose is 30ML. I poured it into the dosing cup and decided that it looked like it could knock me out for a good 30 hours so I poured 15 ML back into the bottle leaving me with only 15 ML to take. I took it at 8:30 and was asleep by 8:45. I didn't budge until 9:30 .... THIS MORNING. If you take into account last night was the end of Day Lights Savings time, I slept for 13 and 1/2 hours on 1/2 a dose. I can't imagine if I had taken the full dose.

Anyways, I do feel better. :) I'm still on antibiotics. I've only had three bouts of running to the bathroom. I was supposed to have blood work on this coming Wednesday, but we pushed it back to the week after Thanksgiving since there are several factors that could really affect the blood work results. I go get my eyes checked on Tuesday. I imagine that in about 2 1/2 weeks I'll be sporting new glasses.

Getting there!

With each passing day, I feel a little bit better. On Wednesday and Thursday, people kept recommending to me to try a little cough syrup I had never even heard of. Where do I live? The Dark ages?



This stuff is liquid gold man! Thursday I was coughing so bad to the point of almost puking. And by almost ... I mean (TMI alert!) something came up and I was forced to swallow or I would have vomited in my car. And for those of you that know me, know that I LOVE my car! I was in tears from coughing so hard Thursday evening. I told my husband about this stuff and the trooper he was went out after his work event to get me some. When I woke (from very little sleep from all the coughing), I discovered three bottles of the stuff. One for Day time relief and Two for Night time relief. The thing is .. the Day Time stuff works so well, that I didn't even need to use the Night time stuff (b.c it has three other meds in it that I didn't really need last night).

I actually have a difficult time trying new medicines because I'm terribly sensitive to things. You know the side effect list of things ... if one says "MAY cause drowsiness." Well if it "may" cause drowsiness, it might as well say "WILL" cause "sleep for 1/2 day." Things that don't even say "may cause drowsiness" cause me drowsiness. Sometimes when I take Tylenol, I sleep for hours! Plus lately, I've been having weird allergic reaction to things. Example is that the other day I had a fever so I took Motrin and it caused my eyes to swell. I'd say who is allergic to Motrin, but I know a lot of people are allergic to different fever reducing meds. It's just weird that I haven't had a problem in 34 years and all the sudden I am ...

Anyways, Delsym has been wonderful. I took it before going to work yesterday. I only had one major coughing spell instead of a continuous coughing spell I had been having. I took it again last night before bed. I slept all night soundly.

On the antibiotic front, I've been taking Amoxil since Tuesday evening. It's really starting to work. My nasal passages are pretty clear and my nose is no longer running like a faucet. And you know that lovely post nasal drip that causes serious sore throat? Yah that's disappearing too. The antibiotics have only given me one round of bathroom runs (PUN intended) after dose 3.

As far as I can tell, I'm not really having any herx reaction. The only thing really "off" was that yesterday I felt like a complete moron ~ like washing my hands and turning around and washing them again ... or throwing bibs in the trash instead of the laundry or even being baffled as to why formula wouldn't come out of the bottle when I've used this type of bottles many times (it had a stopper in it .. DUH!). It added some humor to the class yesterday. In my defense, the others were just as stupid yesterday. We kept teasing each other all day about "How old are you?" (indicating that we were in our 90's instead of in our 30's).

I've been enjoying helping out at the other school. I'm feeling very appreciated (not that I don't feel appreciated where I already work) by the teachers. The teachers want me to stay on permanently. I haven't made a decision. I love both schools. Each school has it's pro and con. For right now, I'm splitting my time between the two schools.

The friend that won't leave

So I've had this cough since Sunday. I've pretty much coughed non-stop since. I'm surviving though. I've had 4 doses of Antibiotics and only had round of stomach problems. I call that a success. :o) I'm hoping that by Saturday I'll be feel tons better. Even though I sound terrible and the cough just doesn't want to leave, I actually do feel better today than I have since Thursday. So I'm heading in the right direction.

Amos The Amoxy

Usually when I leave the Urgent Care, I remember why I hate regular physicians. This was a P.A and I was very impressed. He even asked me what generally worked best with my bacterial infections. I told him usually either Amoxil or Zithromax and that I preferred a suspension. He was very willing to write it for Amoxil and to write it out for a suspension without question. I'll be taking 1200 mg of Amoxicillin twice a day for 10 days for a total of 2.4 grams a day. If I'm remembering correctly, the typical adult gets between 500 mg and 875 mg twice a day.


I don't remember what my dosing was when I took Amoxil with other antibiotics for Lyme Disease, but 400mg/5ml is the largest dose in a suspension form. I just don't recall how many ML's I took. Usually day one and two go okay, it's days three and four on antibiotics post Lyme diagnosis that are the killer. Just wanted to give a good update not only for you guys, but for me to remember later on. :)

So the P.A. said that generally what happens is that people get a small virus that they fight off on their own in about 5 days. Since my symptoms have been going on for about 10 days, it has mutated into a bacterial infection. This is typically what happens in my case. However if I get the Vitamin C IV quickly enough, it helps kill off the small virus so that it doesn't change into the bacterial infection.

There is a small chance that I'll have a herx reaction due to the antibiotics killing off any Lyme bacteria lingering around in my body. I have blood work on next Wednesday. It will be interesting to see how things look while I'm on antibiotics.

Still sick

**Update since this morning** I know the way my body runs and it was either try to squeeze in yet another IV or go get some antibiotics today. I personally know that Tuesdays are my LLMD's business IV day so I didn't think I'd be able to get squeezed in for one and for two, I wasn't sure they'd be able to get an IV started so I decided to hit the Urgent Care to go ahead and get this infection cleared up. I'm sick of being sick and didn't think I could wait until Saturday to take care of the problem. So Amos the Amoxicillan and I are becoming reacquainted today. I would take it right now, but really the best dosing is at 12 hours. So I'll wait until about 5:30 to take it so I can take it at 5:30 twice a day for 10 days.

**** original post *****

I'm still not running on all 4 cylinders. In fact, I'm running on maybe only 2 of them. Last night, I got a really kind email from my boss. She told me she knew I hadn't been feeling well and offered for me to take today off. I would like to say that I accepted this offer, but it wasn't taken guilt free. I always feel so guilty about taking time away from all my "babies." I feel like I'm letting them down or something of that nature. Truth be told, I need today to be at home curled up in the bed dosed up on otc medications. All my waking moments will be spent wishing I was teaching my kids how to read.

I've passed this lovely germ to my husband who is now more than likely also going to be spending today at home as well. So we both get a day off of work, but more than likely we'll spend it sleeping. When we get sick, he tends to get it in the ears and I get it in the lungs/throat. Last night, he could barely hear and I could barely speak. Makes for quite interesting conversation.

I guess one of the main reasons I feel guilty is that I haven't stepped foot into my school in a week's time. I volunteered to help at another school so I have been there. There was no time to prep the children to let them know I was leaving and that I would be back soon ... I just was gone. I feel so guilty about that. Now it's time to hit the DayQuil and try to get some relief from the symptoms I'm feeling.

PS, hubby has Lyme appt on Saturday. So if I'm still like this, I may try to see if he'll write me a script since I've tried all the other routes.

Dose 5

I have a very strange reaction to antibiotics. It's very very weird and it has always happened.

Dose 1: Something always happens to make me think maybe I shouldn't take it. Sometimes it's (TMI) massive bathroom breaks, sometimes it's a strange rash, sometimes it's swelling somewhere. This time was no differnet. My left eye started swelling and it appeared that I had pink eye. I knew this would go away by the evening (the trend with most of my 1st dose episodes).

Dose 2: It generally goes better than dose 1. I always get excited that maybe nothing will happen while on antibiotics.

Dose 3: ALWAYS get nauseated & puny on Dose 3. As the tradition continued, I was nauseated all morning. However I had almonds with me so I ate them and felt better afterwards.

Dose 4: Last night, I felt so puny. I felt like I was going to barf at any second and was all hot & sweaty. I finally went to bed at 7:30 missing my favorite show. Now if this tells you anything, this show is the ONLY show I watch live anymore. All the rest I watch on DVR. But Survivor ... I hve to see it live! In i'ts entire season, I have only missed 3 episodes LIVE. Make that four now.

Dose 5: Always Always Always get the diahrea. I've already been to the bathroom 3 times and I just took Dose 5 15 minutes ago.

I have 15 doses left. Let's hope that the tradition doesn't continue b.c if so, I will be very sick by Sunday. At least I'm not having any other of my herx reactions. This is a VERY good thing.

I'm still coughing up a storm uncontrollably. I try not to take cough syrup b.c I know that I need to cough junk up. If I take the cough syrup, it will surpress my cough so that I won't be coughing stuff up. Bad part is that ... I fear. If I cough, I'll ... well .. I think you can guess what I'm scared will happen and it has to do with both "ends" if you get my drift.

I could take an expectorant, but I try to take as little medicine as possible. I will see my LLMD for my appointment tomorrow. We'll see what he says about my still lovely hacking cough.

Well off to run to the bathroom. Oh joy!

Doc in the Box Visit

** Edited down at the bottom **

Woke up this morning feeling even worse so I decided to make a quick stop to the doc in the box. When I say quick .. I mean really quick. I got online to ensure that I knew where the doc in the box was located. I saw a link that said something about getting in line now. So I registered for a 10am appointment. I was the 5th one in "line" but I was the first on to be seen b.c I registered online. How's that for prompt?

They asked for my symptoms: Fever, Cough, Body Aches, Runny Nose, Headaches

They took my temp: Normal (Go figure that I had taken a Tylenol an hour prior .. of course my temp was normal)

They took my blood pressure and Ox: Normal.

Listened to my chest and stuck a huge stick up my nostrils which made my eyes water.

Doc in the Box comes in and listens to my chest. Said he was just waiting on the rapid flu test to come back, but he speculated that I did not have the flu ... but a really bad case of Bronchitis.

He leaves and comes back with three prescriptions and the good news. I don't have SWINE FLU, but only a bad case of Bronchitis. The thing is that I am not sure that I want or desire to take these prescriptions. First: One is an antibiotic. I've not had an antibiotic in over a year. There is no telling what kind of Herx reaction I'll have when I take it. It's also the antibiotic that gave me the worst reaction when I was on it for Lyme Disease. Second: He wrote a prescription for Steroids. Anyone that's anyone in the Lyme community knows you should run screaming from Steroids. I questioned him and he said that if I don't take it ... I could wind up in the hospital. What he doesn't understand is that if I do take it, I could wind up in the hospital. *sigh* Third: he wrote a prescript for a cough medicine. The strongest they have besides a narcotic. I am *really* sensitive to cough medicines. They knock me out on my backside.

There is not a single thing he wrote for me that doesn't have the red flags screaming. I'm going to have the hubby fill them for me. Try to get in touch with my Lyme doctor. The problem is that his office doesn't open until Tuesday. If I continue to go untreated, I could wind up in the hospital. If I go ahead and take these things, I could wind up in the hospital.


What's a Lymie to do?

*** My Pharmacist did not fill the cough med script. She showed hubby the strongest over the counter stuff for me. She did fill the other two. I love my pharamcist. She even gave me an easier way to take the antibiotics (filled a liquid instead of tablet like it was written). So once I get the go ahead from my wonderful doc ... I will have easy way to take it. Though she said "don't shake vigorously. that will make it taste even worse. Tilt it side to side like this easily." LOVE my pharmacist. Who do I love more than my pharamcist? My husband. He's the one that went to the pharmacist armed with questioned. He came back and gave me all the answers! ***

Cutting out four years

So today I cut out four years worth of hair. The last time I really got my hair cut was in 2005. I've had it trimmed since, but never a "real big" hair cut. So I took in a photo of me from 2005 and said that I needed a "new me" to go with the "new health." The reason I've not had my hair really cut since 2005 is because it stopped growing. In the last year, it has grown in major spurts.

So for your viewing pleasure: Pictures of the before and after. Sorry for the blurry before photo, but I was the only one able to take the picture and this was the best I could do.

Very Nervous (this was on Sunday afternoon .. photo courtesy of Missy)

Thursday February 26, 2009 5 am

Four years worth of torment in the floor. Look a small dog!



The Big Reveal!

And in getting rid of four years worth of hair ... I got rid of the ONE Antibiotic that knocked me on my Hind Parts. Just opening up the bottle brought back Nausea and almost made me vomit. So it is with pleasure I bring you a photo of me pouring it out! Good Bye Septra!

My LLMD Appt

I saw my Dr on February 7, 2009. This is the appointment in which my PICC line was pulled. I found out lots of things that are disheartening, but also left with hope as always.

The reason I have not wanted to post exactly what I am getting on this blog or any other public forum is for political reasons. Some doctors do not believe that Chronic Lyme exists. Some doctors do. Some doctors that do believe in Chronic Lyme believe in strictly Antibiotic treatments and others believe that there are some alternate methods of treatment. I have a doctor that believes in BOTH methods. The more he learns about Lyme & treatment the more he believes in an alternative path of treatment.

In September, I had a live blood analysis done. I have never asked about other patients that have had this done. However in my appointment on Saturday, my doctor mentioned that the doctor that does this Live Blood Cell Microscope now comes to his office every other month. He now clears his day for these appointments so he can see exactly what is going on with his patient's blood cells.

He said in January there were 5 patients that had this Live Cell done. Three of those patients used the treatment like I used. This Experimental Alternative treatment. Two of the patients used regular antibiotics. Apparently two months prior, they both had about the same amount of borrelia in all three forms of bacterial (L shape, spiral shape & cyst shape). Well in January (IF I am understand correctly) .. the 3 patients that did the alternative method ... there were VERY FEW Cyst forms and their spiral loads had decreased dramatically. The two patients that had done antibiotic therapy .... had LOTS OF CYSTS and lots of the other types too.

What does this have to do with MY appointment you ask? Well, I just found out that my doctor is having difficulty getting the alternative therapy. The doctor that invented this along with another physician in Texas are in trouble with the medical board in Texas because they have been using this treatment. The doctor that invented this & the doctor in Texas have had very high success rates with this treatment. I do not know the whole break down of the situation, but either way it is making it difficult for doctors to get this treatment.

As it was, the compouding pharmacy that made this drug wouldn't send it to North Carolina. So my doctor had to order it through another doctor who would sent it to the few patients he had on this protocol. Well now that doctor has closed his office making it impossible for my doctor to get his hands on these treatments.

THIS TREATMENT HAS SAVED MY LIFE!!!!! I am so upset that not only will I not be able to finish this treatment, but that others that have just begun this treatment won't have access to it either. This is why I was so not wanting to talk about it b/c it's so controversial that if anyone got wind of it .. it would be unavailable. I'm frustrated b/c it's gotten me so far.

So what is in my future? For now, we will stop (obviously we have to b/c he has no more of this drug in his office) and will look at an alternative to use. First in a couple of weeks, I will do the MSA test. This is the test that looks at my "energy" and decides which supplements balance in my body and which things I do not need. It has also correctly identified that I had heavy metals, bartonella, babesia, parasites, candida, and borrelia before any tests picked up on it.

I will not be on any Antibiotics. We are going to be working on getting rid of the damage that was caused by Lyme Disease. I will also start on some fiber to get some of this mess out of my colon (how loverly).

As long as things go as planned, I will not have another IV for 6 months. Our plan for now is for me to start on this stuff called OSR. I don't really quite understand it, but from what I do gather it helps the body make Glutathione. With that, it will help my body detox from Heavy Metals and maybe other things (my guess). Then in 6 months, I will have another IV Chelation Challenge. By that time, my veins should have healed from the PICC line and it will have been well over a year since my veins were accessed by IV other than the PICC.

If my metals have decreased, we know that what we're doing is working. IF my metals have increased or stayed the same, we will know that what we're doing is not working. It will be determined at that point whether more IV Chelations are needed. Of course at that time I am guessing if it is determined that I *do* need more of those ... OR I'm backsliding and am needing IV treatments and my vein access is not great ... another PICC will be discussed, but we're both hopeful that will not be needed.

Also I am going to get another Western Blot test just to see how my bands line up (I really want a CDC positive to SHOVE in my regular physician's face).

So that's all for now.

So Angry

This post is probably not going to be very coherent and very long and for that I apologize in advance.

For most Chronic Lyme Patients finding the answers to their medical condition is often years in the making. I'd say more times than not .... it takes a person saying "Oh have you ever thought you might could have Lyme Disease?" OR "I heard about this doctor that can figure out what anyone has." OR "Your symptoms sound suspiciously like mine before I was diagnosed. I have Lyme Disease." OR "I know this person that was as sick as you are now. They have Lyme." OR something similar.

I got the "Did you ever think it could be Lyme Disease? I am being treated for it and you should check it out. You have a lot of symptoms that are on the Lyme Disease check list." So then I checked it out and got in touch with the Lyme Disease Foundation that forwarded me to an appropriate Lyme Literate Medical Doctor (my particular physician also specializes in other things such as Heavy Metal Toxicity & Nutritional Deficiencies & other things so I knew he wouldn't have "Lyme Blinders" on and only assume that I had Lyme Disease).

Integrative Medical physicians are often under attack by their medical boards ... whether those medical boards are in North Carolina or other states. I know of several physicians (even those that treat other things than Lyme Disease) in North Carolina that are under investigation. In fact not so long ago, we had one physician that did treat Lyme (as well as AIDS/HIV) that moved from NC to SC because the NC medical board put so many restrictions on him that he was unable to practice the way he needed to in order to help his Lyme patients improve.

I have also gotten wind that another physician has closed practice in NC because of the same thing. This physician did not have enough financial funds to move his practice to another state and he was also a bit older than the first Lyme Doctor. This 2nd doctor may or may not be a Lyme Physician. I just know that his office recently closed because my doctor's office got some of his supplies.

Other states are having the same issues. I also found out that another physician decided to close his doors and most recently today ... I found out that a physician in Maryland was recommended by his lawyer to stop treating all his Lyme patients because FIVE cases were currently under review by the Maryland Medical Board. If they prove that he isn't treating the way that Infectious Disease Society says he should treat Lyme Disease, he could have his medical license revoked. The thing is that that particular group of people do not believe that Chronic Lyme Disease exists. They believe that Lyme is "cured" after only 60 days of antibiotics at the most.

Now I have been in treatment since February/March of 2007. That is way longer than 60 days ... I can not imagine how sick I would be had my antibiotic regimen been cut off at 60 days. No doubt in my mind, I would be in a wheelchair or a coffin by now had my LLMD decided that May of 07 that I was "cured."

It scares me to think that my doctor is under the radar of the North Carolina Medical Board. I know he's been under suspicion before for not treating the "standard of care" for other things. Because of that, I have to sign a paper everytime I go in saying that I want treatment. I know my physician doesn't do the things by IDSA's "standard of care." That is MY CHOICE! I do not want the "standard of care." That "Standard of Care" got me no where for 12 years. And now that "Standard of Care" is going to cause a man who spends more time caring about his patients more than probably his own family ... to jeopardize his medical license.

This angers me more than I can even coherently write!!!

What can you do?

1. If you're in North Carolina: Go to this website and join the fight for our North Carolina Integrative Medical Physicians.

2. If you're a Lyme patient or know about a Lyme patient, go to this physician's blog. Support him by writing letters and calling! Who knows some of you might even be seeing this LLMD yourself ... or have considered seeing him ... His practice is in danger! His patients are in danger. Please help him!

3. Another for NCer's ... Go to this website and email them if you have an ELISA and Western Blot test that is CDC positive after January 1st of 2008. Just recently, North Carolina has declared that if TWO people in a county have these two tests as CDC positive ... they will declare it an endemic area for Lyme Disease. Please please please ... email them with your stories from North Carolina so they can determine whether you would help meet this criterion. In order to improve the quality of life for those with Lyme Disease it is vital that we get as many counties in North Carolina deemed "endemic" as possible. Only then will the IDSA realize that there is Chronic Lyme Disease!!!!!

Thank you for your time and hopefully I made myself as coherent as possible. This message and this blog would NOT have been possible had I received "standard of care" treatment in North Carolina.

Mandy from Under Our Skin would not be ALIVE if it had been for "standard of care" treatment. Please I beg of you ... don't let my friends die because of idiotic infectious disease doctors and medical board drama. Don't let our doctors go under because of lack of knowledge by the medical board & infectious disease doctors. Scroll back up if you have to and see how you can help.

Living the Lyme Life

This is a long post. Sorry in advance.

I could feel it on the inside. Every muscle and bone ached ... I couldn't see straight. I was dizzy. I was overall miserable. It was at that moment that I stopped living a normal life and began living the Lyme Life. I was sick all night and slept just a little. I woke up, I went to work, I came home and I ate. Then I went to bed only to be disrupted by a night of vomiting and diarrhea. Then the next day looked exactly the same. It wasn't pretty, but it was my life.

Every moment of my day was filled with vitamins and antibiotics. If someone wanted to invite me for dinner, I had to insure I had my little burgundy lunch bag with me. It did not have food in it. It had my antibiotics in them and other vitamins that I may need IF lunch/dinner ran late. I stopped exercising at the gym because it was too inconvenient and painful. My brain wasn't working well enough to do the Step Aerobics that I just loved and my body was failing me. Also it was too difficult to stop half way through a wonderful work-out to take my antibiotics.

I fell into the Lyme rabbit hole. It was a different world than I was accustomed. If I had to make a guess I would assume that most people couldn't even begin to understand my body's own personal prison. Every person with Lyme Disease is affected differently and I can not even begin to understand my friend's personal prison. Their prison is different than my prison.

After a year of treatment, my prison was becoming more and more restricting. The restrictions of the medications themselves were suffocating. Take this two hours away from this and you have to eat with this one, but you can not eat with that one and the one you can eat with you can take with this other one, but only if you don't eat dairy! You can only have dairy two hours away from another drug and make sure you don't lie down at least 2 hours after you take this one and whatever you do ... do not go out in the sun or you'll get sunburned! This one will make you vomit and this one will give you diarrhea and be careful with this one because it can cause severe dizziness, tendon ruptures and embarrassing flatulence!

Before my diagnosis, I thought knowing what I have is better than not knowing what I have. But I was beginning to think after over a year of treatment .... I'd rather be dead than live in this personal prison. My last straw was on a day in which I passed out at work and was hallucinating streaks of pastel colors. Finally in May of 2008, I was offered a key to get out of this imprisonment. I was offered the AMT treatment that would leave me not taking a single antibiotic. I would be able to eat dairy whenever I pleased and would be able to nap without worrying about acid reflux and go outside (should I really want ... and at this point can you blame me for not wanting to be out and about with the ticks at large?).

From May to July, I spent in my own personal IV prison. It would take 3 or 4 jabs to get an IV started. I would drink 24 or more ounces of water & use a heating pad for them to get an IV started. Then finally on July 17, 2008, I was given a reprieve of needle sticks. My PICC line was inserted. It gave me a new set of problems, but these were much better than the alternatives.

Now in January, I still have the PICC and am working on Living the Life instead of Living the Lyme Life. Most of the time, I forget I even have the IV in my arm. In fact, I am forgetting so much that I have forgotten on several occasions to put in the Heparin in my line on each night and almost got in the shower the other night without my picc line cover!

I am taking my life back. I have started exercising again. For Christmas, I was able to locate my husband the Wii. He has been wanting it for a while so that we could buy a Wii Fit. I was hesitant because I figured that the Wii is just a "fad." Well, I purchased it for him and we have really enjoyed it. My parents located and purchased a Wii Fit for our birthday. Both of our birthdays are in January. We began working out on December 30th and I have only missed two days. I have worked out at least 30 minutes every day. Some days I have even worked out for 90 minutes.

It's amazing to be living life again after living so long in the Lyme life! There is hope for all of you living the Lyme Life! Yes I am still in treatment and I am not at 100 percent, but my days are so much better than they were a year ago ... even 6 months ago. Maybe one of these days I won't even consider myself a Lyme patient, but a Lyme Conqueror.

Nov 14, 2007

* I am awake and alive after my treatment yesterday. I did sleep through the worst of it. :) Praise God for that. I've taken a few little naps today and gotten some laundry done. I am still having major ear problems, some body swelling, some muscle twitches, some bad headaches, but other than that ... doing pretty good.

*Regularly scheduled post may commence now*

Exactly 13 months ago: this is how I was feeling. I can't believe how much things have changed in 13 months. I am so glad I was feeling ready to take control, but hard to believe that it took 6 months to actually take control after this was posted in Nov. 07.

Health Update Part Deux
Current mood: drained

It's a little disappointing and discouraging to find out instead of marching forward in this fight against tick borne illnesses, I am marching backwards. I've done my crying and now it's time to do my fighting. I will beat this thing and I will not let it take control of my life anymore. Don't quote me on that though because my "mood" might change quickly.

The short version is that I am going on two additional antibiotics while removing one of the antibiotics that I have been taking. I will also add a few supplements that should aid in rising my cortisol levels which are extremely low. The probability that someone with Lyme Disease has other tick borne illnesses are extremely high. I knew that already. Now I have been clinically diagnosed with Babesia and the new antibiotics I have been told are geared to treat Bartonella. So that's the short version.

I talked to three people yesterday after I found out all of this. Two were saying "You can do this" and the third spent two hours on AIM making me laugh just so that I could forget about the diagnosis for while. I thank all three of you because if it weren't for the three of you ... I would not be smiling right now.

13 months ago

Here is my blog from myspace from 13 months ago today. Wow.

Last few weeks
Current mood: Rebellious

My last few weeks have been weeks of highs and lows. I don't understand how one day can be so fantastic and the next you can feel like you've been hit by an 18 wheeler. Lyme disease is so damaging to so many things, but I think mainly my ability to have fun has been drastically altered. I've never been one to stay up late or go to ball games or trips or ballets or anything that remotely resembles fun, but the fact that I have been stripped of the possibility of fun has taken a toll. So I am doing what I must: I am rebelling. Rebelling against my meds. Rebelling against my body. Rebelling against my spirit. My spirit will not break. You can't break what's already broken.

The last few days I have woken up nearly every morning at 3am "worshiping" the toilet. Then I have to go be at work by 6:30 and try to pretend that everything is just hunky dory. I spent all day in bed on Sunday because I rebelled against my meds and went to the Carolina basketball game to watch us win and then stayed out way too late eating dinner. Of course the dinner didn't set well and I wound up back in the bathroom again at 3am. My legs felt like someone twisted the meat right off the bone and my stomach was just about as empty as it has ever been. There is no way to put into words the amount of pain I was in on Sunday. Going on and off of antibiotics that make me feel so unbelievably bad inside. The rebellion was nice, but what did it accomplish? Another few days of Hell and now that I'm back on track ... I'll be back in the bathroom because the antibiotics make me feel so gross.

My first ever UNC basketball game was awesome. Almost everything was perfect. Ignoring the fact that my entire body was killing me and the smell of the lady wearing what appeared to be an entire bottle of perfume was gagging me, I actually had a pretty good time.

Rebelling the evil spirit of pain, I have made plans to go to the ballet near Thanksgiving and a trip to Western Carolina in a week or so. I'm pretty stoked to be doing things that are fun for once, but hoping and praying that maybe I'll be able to not be sick or be punished for actually having excitement in my life.

It could be worse. Rebellion. I will rebel, but not so that it puts my life in jeopardy. I will go and dutifully take my 7:15pm round of antibiotics so that in about two hours I will begin to feel nauseated and two hours after that my stomach will begin to churn and I'll finally feel better after one hour of vomiting. I know TMI, but live in my world for one day ... your spirit would have been broken long before now. I want to be awaken from this nightmare. Maybe one of these days, I'll wake up and realize the last 12 years of my life have been one gigantic nightmare and it will be 1995 again.

What would you have done differently? I would have demanded answers 12 years ago to my health problems.

15 months ago

I wrote this blog on myspace on August 26, 2007. It was approximately 5 months after beginning treatment for Lyme Disease. I will bold some very important lines.

Sunday, August 26, 2007

Health Update As some of you may or may not know, I started having some health problems two or more years ago. {would be now over 3 or more years} I have never been extremely healthy having some odd things come up over my life (sinus problems, breast lump scare, gallbadder surgery, seizure activity), but nothing could prepare me for the worst scare of my life. I had something that no one could or would diagnose. I jumped from doctor to doctor having many tests and many wrong diagnosis. MS, Lupus, Rheumatoid Arthritis, and it's all in your head was just a few of them. It was time to take matters into our own hands and we saw a doctor who specialized in very weird things. He diagnosed people who couldn't get diagnosis. If we couldn't get answers from him, I knew that they would find out the answer after an autopsy. I felt close to death and I hid it from most of the people I loved. I couldn't hide the pain or the twitches or the multitude of other problems, but I could hide that I felt I would be better off dead because at least they would give my husband some answers to what has been wrong. Fast forward to March of this year, I saw the doctor and he gave me a diagnosis. A tiny tick had given me this disease and this disease may not be cured, but I could get better and possibly go into remission for life. There was no telling how long I had had it. A young child? Caused my seizures? Sinus issues? Middle school? Sheer and utter depression? High School senior? problems that started in college that had no answers. A few years after marriage? The breast lump and gall bladder problem. After the surgery? There was no way to know for sure, but what we did know was that there was treatment. I started all the treatment. Three antibiotics for like 8 weeks straight. YUCK. Nasty. I was nauseated all the time and throwing up for half of that time. I felt like I was in early stages of pregnancy, but if I was pregnant someone was gonna get sued. Like all the doctors who insisted that I must be pregnant so ran pregnancy tests on me. Obviously I wasn't pregnant or I would be fairly big by now (5 months or so). Antibiotic regiment eased off and we tried different things. Some worked and others gave me horrible side effects or appeared to be highly allergic too (throat swelling, eye swelling, lots of red dots on my body, and vomiting). I also started weekly IV treatments for vitamins and minerals. These were things that the Lyme Disease bug robbed me of. I slowly started making them every two weeks instead. I started having some time off of meds. two days to start, then a week, now I'm up to two weeks off of antibiotics. I went back to the doctor on Saturday (yes Saturday, he opens once a month on a saturday). He gave me some good news. I was improving, but I wasn't back to normal yet. I could have told him that. We are sticking with the "new" treatment plan. I will have 5 days of antibiotics with two days off. Then, I will do it again. After second week of antibiotics, I get two whole weeks off. I will go get IV's every three weeks instead of every two weeks and will add in a few vitamins to my daily regiment (Vitamin C, Chromium and another one that has to be specially ordered). It's a very carefully planned regiment. Take vitamins two hours away from antibiotics. Take Antibiotics two hours from going to bed. Thank God my brain is almost back to normal or I'd have to have a spreadsheet like I did in the beginning checking off every thing I took. The big thing that we're adding is some hormones. Now those of you that know me say, "Geesh aren't you hormonal enough already?" Apparently I have too much of one and too little of the other. So if they give me a supplement of the one I have too little of, the other one will go down? I'm not sure exactly how it all works but apparently it will help me sleep better and get rid of my nasty PMS symptoms. I have to take that 10 days out of my 28 day cycle. It has to be at bed time only. I have a bunch of blood work to go endure the first week of September. Not fun, but it will give us some answers as to whether I really am getting better. I won't find out those answers until November. I hate the wait, but at least I'll get some answers with this doctor. The other doctors told me the results (always "negative") and didn't explain that even though it was in the normal range it was on the low or high end of normal and I could feel better if it were more in the middle range of normal and there was something that could be done to get it to the middle range of normal. Hey you guys know I'm back to feeling better ... I've started writing my "novels" and run on sentences again. AND (this is for Mellissa A.) I've stopped running into walls. I guess I sometimes still do that, but I've not been tripping over the thin air. I'm just glad to be on the road to recovery. I'm glad to have some answers and possibly have some problems fixed that I've had my whole life (PMS goodbye my dear friend). Thanks to my friends that have stuck with me through this journey. And those of you that met me while I was going through this health journey, you guys don't know the "real" me. I can't wait until we meet for real.

Tick Borne Illnes PT 2

Lyme Disease is a spiral bacteria. It bores itself into your cells and hides. Because of it’s corkscrew shape, it travels in your tissue and hides itself in healthy cells. Therefore your own immune system doesn’t start to fight it because it doesn’t even realize that there is bacteria there. The bacteria also can change form when in a “hostile” environment (antibiotics) and can form into cysts which are safe from most antibiotics.

Lyme Disease reacts differently in each person and there can be a multitude of symptoms. Some people infected with the Lyme bacteria have over 75 symptoms. Most people associate joint pain with Lyme Disease, however not everyone has joint pain. Also another marker of the disease is a bulls eye rash near the site of the tick bite. Again, most people do not get the bulls eye rash or it is in an area where it can not be detected (scalp under your hair). Because the bacterium multiplies so quickly, when the bacterium is killed it creates toxins which make the patient feel worse on antibiotics.

There are two types of physicians that treat Lyme Disease. It is a very controversial illness and the two types of physicians believe different things. One particular group of doctors believes that long term antibiotics is not the answer. That if you are on antibiotics for more than a month and still have symptoms that you have Post Lyme Syndrome. The other group of doctors believe that if you have symptoms of Lyme Disease (or any of the other tick borne illnesses) that you still have Lyme. Most Chronic Lyme patients side on the group of doctors that believe in long term antibiotics.