Weekly Update

I figure if I'm going to slack off on the blog then the least I can do is post a weekly update on how I'm doing. 

• Health - My symptoms have slacked off this week.  However, one symptom flared with a vengeance the day after I stopped my medications.  This hasn't happened in such a long time that it caught me by surprise.  I woke Monday morning with a small sore throat.  I thought nothing of it and went on my day.  The next morning I awoke at 2am with my throat so sore that I couldn't swallow.  My thoughts immediately went to strep, but with strep - I get a delirious fever.  I checked my temperature and it was normal. I got up - to find something.  My magical mystery drops. I found them and took them and only needed the first kind Tuesday to Thursday.   I'm still on the 2nd one.  I'm not sure if I've ever talked about these drops so I might as well share now in case I haven't

•  The first bottle is called Bio Chlor Dox.   According to the manufacturer, "Bio-Chlor-Dox is a natural antibiotic that kills bacteria by supplying generous amounts of oxygen to anaerobes, which are organisms that do not require oxygen for growth and may even die in its presence. It is an effective antiviral, antibacterial and anti fungal product. By administrating Bio-Chlor-Dox, the immune system is assisted in carrying out the normal body process of defense against invading microorganisms, with little or no toxicity to normal tissues."  Basically what it means - is that this supplement provides a lot of oxygen to organisms that don't need oxygen and therefore might kill them.  Whenever I feel like I'm coming down with something, I run to this bottle of stuff.   For me, I typically do 5 drops under the tongue twice a day until I feel better.  If I catch it early enough, I can clear it up over one day.    However, in this case - I didn't take it on the first day of the sore throat so it took me three days to clear up the throat issue.  If I'm feeling especially nasty, I might bump it to 5 drops 3 times a day.  I also use it if I've been exposed to someone who is very sick.  I'm not sure if it's actually doing something or if I just think it will so it helps.  Either way, I do not care.  It helps.  

• The second is something I take when I get specific symptoms - (sore throat, itchy throat, itchy eyes - aka allergy symptoms) - It's Quercetin drops.  It is supposed to inhibit the release of histamine (aka a natural anti-histamine)  For me, it's beneficial because I don't get drowsy.  I squeeze up a dropper full and down the hatch it goes.  I take it a couple of times a day until the histamine reaction minimizes.  I also take it if I know it's allergy season and I want a little extra boost.  The unfortunate thing is that it seems very difficult to get.  So the last few times I've ordered it, I've been sent a message saying the place I order it from is out of stock.  I keep a check and finally last week I realized it appeared the place had some.  I ordered it, they took my payment and it's on the way!  So I'm thrilled.  I can take it like I need to instead of decreasing the time I take it. 

• Home - I've spent the last week really working on getting the house clean.  Since I had such bad back and leg pain the previous two weeks, I hadn't really done much in the terms of cleaning.  Since Wednesday was such a great day for me (minus the sore throat), I practically cleaned the entire downstairs of the house!  Fortunately, it hadn't really gotten that bad since I hadn't been able to move around much.

• Advocacy - haven't done much on the advocacy website, but there are a few support group meetings this weekend. I'll attend one of them because the other is too far away.  Also been talking a lot with others about May Lyme Awareness Month.  We have a few ideas for May, but have to get some things in order before we can announce them.  We'd hate to announce that we were doing something and then the thing fall through the cracks. 

• I hope everyone has a great week!

Avoidance

I typically avoid writing about specific supplements that I take.  I do this for one of two reasons.  I don't want anyone to think that they should self treat with the over the counter supplements that have been prescribed to me by my doctor for very specific reasons.  Also, I do this to protect myself. 

However in order to help myself heal and get through the process, I have decided to do what I never do.  I am going to share about the supplements I'll be taking.  Now one thing you must realize is that I am *VERY* sensitive to supplements and medications.  I always thought this was due to my very low weight, but now that I am in the normal weight range - the sensitivity continues.  So, I rarely start off where I need to.  Example was when I was on LDN.  The typical amount of LDN for patients was in the 4.5mg area.  I had to start off at 1/2 mg.  I finally got up to 3mg, but I was never able to stabilize there. So in the end, I stopped LDN because I never could reach the dosage that my immune system needed.

A lot of people use "pill containers" for their daily doses.  However, I use mostly homeopathics in dropper form so those pill containers don't do squat for me.  So what I do is work out an excel spreadsheet.  At the top of the sheet, I list Sunday through Saturday.  I list them twice.  One for AM and one for PM. One sheet of paper is my week's worth of supplements/medication.  Then on the left side of the paper, I list all of the supplements/medications.  I make sure that there is an outline for each little box so that when it prints off I am able to easily check off the box for that particular supplement on that particular day.  If am I dosing up --- for example:  1 drop on Monday, 2 drops on Tuesday, 3 drops on Wednesday -- then I mark how many drops for that box so that I know when I grab that bottle --- exactly what my dosage is.

Right now I have 23 items listed on the left.  However to start, I won't use all 23 items.  In fact, last night I only used 6 items.  This morning I only used 10 items. Some of the times I won't be using for another few weeks, but I wanted them on my excel spreadsheet already.  Some things on the list won't be taken on the same day.  Example is that the first 3 items on the list will be taken on day 1,2,3 of the week and the second 3 items on the list will be taken on day 4,5,6 and 7.  Some items I only take once a day (like the Vitamin B because it makes me nauseated and I can fall asleep before it makes my stomach turn).  Some items I don't even have at home yet.  Some items I know exactly what they are for and some I have no clue.

All of the items on my list:

• Cerebromax
• Spinalmax
• Matrix Support
• Detox 1
• Detox 2
• Detox 3
• Tox Ease GL
• Solray D Spray (has Vitamin D and K)
• Methyl B12 Spray 
• Lymph 2 
• Hawthorn Intrinsic
• Scrofulara Intrinsic
• Lapacho Intrinsic
• Probiotic
• Vitamin C
• Vitamin B
• MultiVitamin
• BAB 1
• CLA-K
• Whey Protein
• Vitamin E
• Mepron
• Zithromax

The items I started last night/this morning and I marked which ones were NEW overall and which ones were NEW formulas for me and which ones I've been on before:

• New: Cerebromax - started at 1 drop x twice daily - on Thursday, Fridays and Saturdays only
• New: Spinalmax - started at 1 drop x twice daily on Thursday, Fridays and Saturdays only.
• New: Matrix Support - started at 1 drop x twice daily on Thursdays, Fridays and Saturdays only.
• Old: Tox Ease GL - FULL DROPPER (this is not new to me) x twice daily
• New Formula: Solray D Spray (has Vitamin D and K) - started at 1 spray x twice daily
• New Formula: Methyl B12 Spray  - started at 1 spray x twice daily
• Old: Lymph 2  - FULL DROPPER (this is not new to me) x twice daily
• Old: Hawthorn Intrinsic - 1/2 dropper (not new, but body is not ready for full dropper) x twice daily
• Old: Vitamin C - start at 1 Gram x twice daily, but will ramp up quickly b.c it's not new x twice (might get up to three times a day) daily
• Old: Vitamin B - 2 at bed time
• Old:  MultiVitamin - 1 am, 2 at bedtime 

The Lymph 2 MUST be taken away from food and other supplements.  So I must take that one as soon as I wake up and about 20 minutes before bed and other supplements. 

I will be slowly moving up in dosage on the first three items and also slowly adding in some other items next week.  However, today, tomorrow and Saturday I will focus strictly on these 11 items and increasing the first three things by one drop per dosage per day (IE by Saturday I hope to be taking 3 drops x twice daily).  It's hard to know what are side effects from herxing, detoxing and simply the supplements not agreeing with me.  I am to add one at a time and every few days add a new one.  Last night I started 2 new formulas and this morning I started 3 new things (they must be taken together).  The rest of the stuff I've taken before which is why I started off with 11 things today. 

I really need this to work.  I'm in a great deal of pain. 

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.

Leap Year

When I was a kid, I think I remember there was a librarian that was born on leap year day. I vaguely remember teasing that she was only 10 years old. This is only the 2nd February 29th I've had since diagnosis.

So I have had good intentions the the 2 1/2 weeks. I have taken my medication and supplements exactly and mostly on time and then today happened. I woke up late, but not late enough to not take my first dose of Cortef. I wiped the sweat from my brow (more on that later) and took the 10 mg of Cortef. Then I began writing an essay for my class. I wrote and wrote and wrote some more. Okay it was more like typing and typing and typing some more and then I realized it was 2pm. Ahhhh I had typed through my 2nd dose and it was closer to my 3rd dose than to the my 2nd one. So I made the decision to just "skip it."

Then I was 1/2 way to my Dad's school when I realized I hadn't packed my 4pm Cortef. I nearly screamed out loud and then I realized, this day wouldn't have existed last year. No biggie. ;)

Back to the sweat. I don't know what's going on, but I'm sweating like crazy. It's ridiculous, seriously ridiculous. It is probably related to the new stuff I'm taking. I'm documenting so we'll see when I go for my follow up in April. Well I just wanted to make sure I had written something on a day that only comes around every four years.

Medicinal Compliance

I'm sure that there must be others that understand the dilemma of medicinal compliance. It is so difficult to make sure that you take this one at 8, 12 and 4 and this one doesn't make my stomach hurt if I take it right before I go to bed. Then there's one that each day I have to add another one drop to my regiment. Example: Today I take the Detox stuff at 8 drops in the morning and 8 drops in the evening and the Borrelia drops 7 drops in the morning and 7 drops in the evening. Tomorrow ... it's 9 and 9 and 8 and 8. And the Cortef is 2 tablets at 8, 1 tablet at 12 and 1/2 tab at 4. It really is a lot to remember. Not to mention if the meds make you feel kind of puny and you herx, you don't wanna take anything at all. But, I have a goal to be 100% compliant for at least one month. I'm 2 weeks in and have done everything just right. How do I do it?

Well, I'm an excel spreadsheet lover.

On the left hand boxes, I type in every single supplement or medicine that I have to take. When necessary, I create the name three times and put next to it 8am, noon, 4pm. At the top of the spreadsheet, I type in the days of the week. So let's say that on Tuesday, I need to take 2 Vitamin B's. So I find the little box that corresponds with Tuesday and Vitamin B and type in 2. That way I always know what I need to take. Anything that I don't have to take that day, I mark it out in a grey color. An example of something I might not take today that I might take tomorrow would be if I were getting a B12 shot, I wouldn't be taking the B12 sublingualy. Another example is that I haven't started the drops for Babesia or Bartonella yet, so they are all in grey.

Underneath I add in anything else that is pertinent. This is if I got an IV or HBOT or something like that and what day. Another thing is if I added something to my regiment that day. For example if I felt a UTI coming on and took Mannose Powder. It's not something I'd normally use, but I would want to keep track that I used it. Last week I felt I was coming down with something so I took extra Vitamin C and a few days of Bio Chlor Dox.

The chart helps me stay compliant and it helps me know exactly what I've taken and what I need to take. I also use this same chart to help me keep track of symptoms. On the 2nd tab, I write down on the left hand side the symptoms I've been experiencing. Headaches, Chills, Sore Throat, Twitching, Difficulty Breathing, Fatigue, etc. I have about 20 symptoms on the list, but add if any new ones come up. At the top, I have the days of the week. I label each symptom daily whether it was 0 (never occurred) to 10 (unbearable). I use different colors for each number so I know at a glance whether I felt little, mild, moderate, severe or unbearable for the symptom. So if I see a "RED" box, I know that whatever symptom that was -- it was unbearable. If my box is teal, I know I had some mild symptoms of whatever is in teal. It sounds complicated, but it really has helped me track my symptoms.

It is easier for me to see --- Oh I had a stuffy nose for 7 days this week, but it was a "mild" symptom. As opposed to having a stuffy nose for 7 days that was unbearable. If I told you that I had lower back pain for 17 out of the last 21 days, you might winch. But if I told you that on average, that back pain was mild and I only had a couple of moderate pain days -- it doesn't sound as bad. One day I may have 15 to 20 symptoms that are mild to moderate and the next I may only have 5 to 7 symptoms but they are more severe. Which is more disturbing? I have yet to decide. What I do know is that to have two days in a row of unbearable fatigue is just that - unbearable - and I will crash.

Week 1: I had 5 symptoms that at least one day rated 6 or more. My worst problems that rated 6 or more were stuffy nose, chills, headache, lower back pain and nausea.

Week 2: I had 6 symptoms that at least one day rated 6 or more. My worst problems that rated 6 or more were ear pulsing, throat bumps, headaches, sore throat, jaw pain and fatigue.

To compare the two weeks: There were about the same number of problems although they were slightly different. Week 1 I had not started the detox drops. I also had not started the Cortef yet. Week 2, I had begun both Diflucan and the Detox drops. We attribute ALL of the symptoms to the Diflucan and yeast die off.

Week 3: I had 10 symptoms that at least one day rated 6 or more. My worst problems that rated 6 or more were itching, chills, headache, fatigue, sore throat, left knee pain, numbness, twitching, leg pain and difficulty breathing.

To compare the third week to the 1st two weeks: I had a lot more symptoms this third week that on at least one day rated 6 or higher. Most of those 6 or higher numbers were 6 to 8 in ranking. Fatigue kicked my butt two days in a row by ranking 9 and 10. During this third week, I started the borrelia drops AND the cortef. I was continuing the detox drops and the diflucan. It's hard to say which symptoms are correlated to which medicines, but if I had to guess ---

Itching, Headache, Sore Throat are Diflucan related
And the rest minus the fatigue are Detox and Borrelia drop related.
Fatigue is probably Cortef related.

Just my guess. Also on my chart I leave notes about sleep. I need to know how many interuptions I have during the night, how long was my sleep and how I felt when I woke up. Did I feel rested, tired, fatigued? Did I wake up only once or was it 5 or 10 times? Did I sleep less than 5 h ours or did I sleep for 10 plus hours? Last night for example: I was so fatigued that I collapsed in bed at 8pm (this was after taking a two hour nap on the couch between 2 and 4 unexpectedly).

I didn't wake up again until 4am, but I fell back to sleep and woke up again at 7:45 (and got out of the bed because I woke up feeling very rested). So I almost got 12 hours of sleep, with only one interruption and woke up feeling rested. Considering that yesterday's fatigue level was at a 10, I needed that essentially uninterrupted 12 hours of sleep. Yet a few nights ago, I couldn't fall asleep easily. My sleep interruptions were more than 8 and I only had about 4 hours total of sleep. How do you think I felt the next day? Terrible.

Well I've babbled on enough about my wonderful excel spreadsheet. It really is a wonderful tool to use for medicine compliance, symptom chart and sleep patterns.

The New Treatment

It's going alright, which is better than terrible.

I'm having a really difficult time remembering to take it on time. I have to take it about 8, 12 and 4. Typically right before the time I have to take Cortef I think I better go take Cortef and then, I forget and remember 30 minutes later. Better 30 minutes late, than never I guess. Today is day 4 and I have taken all 12 doses. This is particularly good for me. I hate to admit that medicine compliance has never been a strong suit of mine. Typically when something makes me feel bad, I won't take it. So to feel a wave of nausea come over me, I hesitate to continue, but my goal is to be better this go around.

With the new herbal Lyme treatment, I'm on day 13 of the detox stuff and day 4 of the Bb1 bottle. I'm at 4 drops in the morning and 4 drops in the evening. Nothing terrible has happened yet so I keep on rising the drops. On Sunday, I will add in the "Bar" bottle (for Bartonella). So far so good. I've not had any particularly weird things happen yet other than the mouth blisters, but those happened after I started Diflucan and Detox bottle and not the new Cortef or the Bb1 bottle.

Yesterday, I had a really bad twitch of my hand. Now normally the twitches don't really bother me and I'm not doing anything that can cause any real damage, but yesterday tells a different story. I was unloading the dishwasher. We bought a new blender and the blades are sharp. I was being really careful because the blade was being washed. Well as I passed over the blade carefully, my hand twitched. I cut my thumb on the very sharp blade.

It didn't bleed at first, but I went to the bathroom so I could wash it and get a band-aid. As I got to the bathroom sink, it began to bleed and bleed and bleed. It took 30 minutes of direct pressure for the bleeding to stop. It stopped just in time because I almost got in the car to drive to the Fast Med Urgent Care. The cut seems to be healing nicely. I'm keeping it covered, but will uncover it tomorrow in the HBOT to stimulate more healing.

All in all, I'm doing okay even though I feel weak and have been having some headaches.

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.

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.

Tortoise strategy

This blog is going to be me blurting out and not doing a lot of editing. Typically I write a blog and go back and do a lot of editing. It helps it make sense and keeps me from rambling. Expect a lot of rambling tonight. I'm feeling a bit ADD! huh? What's that? I'm supposed to be blogging about the Tortoise Strategy? Okay let me get to it!

If the hare and tortoise are racing, the tortoise wins the race. Slow & Steady.
This is the strategy I'm using this round of supplement. I started off slower than normal. On Sunday night, I began my B12 & LDN. On Monday, I added B6 to my regiment. Today I added Selenium to my regiment. Slowy, but steadily I am adding one thing each day.

By the end of the weekend, I should theoretically be on

LDN (at night only)
B6 (twice a day)
B12 (at night only)
Iron (am trying to get up to 4 capsules a day; will start off at 1 capsule a day)
Selenium (for now once a day)
Zinc (for now once a day)
Vitamin C (am trying to get up to 4 grams per day to be taken with the Iron)
Magnesium Serene

So far this round I have taken 4 of the 8 things. Tomorrow, I plan on adding the Vitamin C & Iron. Both of which I have taken before. They should (theoretically) not cause me any problems. I had a small headache yesterday. The other thing that was bothering me was I seemed to be extra sensitive to noises. I was trying to go to sleep and every little noise made me jump. The LDN also seemed to cause me to have quite a few dreams during the night. I jumped awake several times from them last night. While I don't mind dreams, it's difficult for me to dream all night because I don't feel well rested when I wake in the morning. I feel as if I've done a lot of stuff in my dreams (especially if they are work related). I had a dream about trying to capture these praying mantises (what is the plural for praying mantis anyway?). I had a dream about hanging out with old friends. I had a dream about running into a friend I haven't seen or talked to in 20 years. Dreams about work, dreams about home, dreams about food, ... by the time I woke up this morning, I was sick and tired of dreams!

Started LDN

A few nights ago, I finally started the LDN. I just took a leap of faith. I will tell you one thing. It has made me exhausted. I don't think I'm getting full restorative sleep. Tonight is night 3 of it out of 30. I only have a 30 day supply with no refills so I once I run out .. i'm out until I go back in October.

I figured out a new and improved way to take some of my supplements. Use some kind of liquid (water, gatorade, juice, whatever) ... open capsules, pour capsules into liquid and use mixer to mix it up. Chug down! I figure some down is better than no down. I've had trouble getting it all down so i'm just taking my time and hope that this works out for me. I think i'm cutting out one that is really really nasty and I'm considering cutting back on one that makes me nauseated. We'll see.

I take EDTA and because i'm on EDTA it takes away all minerals so I have to be on Trace Minerals. Well I can't take the Minerals with the EDTA or it will have been like i'm growing grass and cutting it down all at the same time. I have to take the EDTA with food. I have to take the Trace Minerals away from EDTA so unless I find time in the middle of the night (Yeah like I am going to intentionally wake up from my nice slumber to take this which makes me feel immediately nauseated) it will have to be taken with another one that can't be taken with food. Well .. that means I feel nauseated from taking it. What a bummer. I've not felt nauseated in months and months.


In any case, I'm liking this new and improved way of taking my supplements. It has helped tremendously. SO no naysayers saying that I can't do that. B/c it's t he only way I can get them down simply.

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.

Supplement Strategy

So when you have tons of supplements to take, you begin to develop strategies to take them so that you get them all in. I have been really slack on all my supplements lately so I needed a new strategy so that it would be easier to locate exactly what I needed to take when I needed to take them. I wanted to share because well it's so super fabulous!

I had this thought of color coding all the bottles so that I would know which bottle I needed to pick up for what time (example would be that one bottle might have a red, blue and purple sticker indicating I might take it for afternoon, dinner and bed). Off to Target I went to find something. It was then I discovered a massive pill organizer with the colors Red, Blue, Green and Purple on it.

The idea was coming into my mind very quickly. I ran walked over to the school supply section which was quite the madhouse (considering in NC it's tax free weekend AND back to school time). I found these simple stickies that I thought I could make work. And guess what colors it came in? Red, Blue, Green and Purple (plus yellow too).

I had already written out a chart as to which one I'd have to take upon waking, as soon as I got home, at dinner and at bedtime. So I brought out one bottle at a time and studied the pill organizer. I realized I would need to take that one 2 times a day. So I found the color sticky that matched the pill organizer slot it would go in and slapped that sticky right on top! I then went ahead and put all capsules in the slot for the week. Then I went on to the next bottle.

Here is what it looked like: The bottles in front and the ones I also have to take first thing in the morning when I wake, but I can't fit those things in the pill organizer. I just color coded them as if they would go into the organizer. :o)



Here is what my box of supplements looks like:



Also have a couple in the fridge.

And I also got a little shopping therapy while I was out and about (since it was Tax Free weekend and all). I got this really cute dress (but my face was really really hideous so I chopped my head off).

The Serenity Prayer

God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.

About three weeks ago, I felt a twinge. The twinge of a headache. This wasn't just any headache. It rivaled the headaches I had pre-diagnosis. The twinge lasted three days. Shortly thereafter, I felt another twinge. The twinge of fatigue. This wasn't just any fatigue. It rivaled the fatigue I had pre-diagnosis. The fatigue lasted three days. Shortly thereafter, I felt another twinge. The twinge of vibrating knees. I placed my hands on my knees while bending over to talk with a child. It hit me like a ton of bricks. Shortly thereafter, I felt another twinge. The twinge of a sore throat, a cough, a runny nose. The headache reappeared and so did the fatigue.

The thing about these twinges is that I have felt them all before. I am omniscent when it comes to these twinges. The twinges and I are old dear friends. And yet I want this "old dear friend" to visit quickly and leave.

God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.

I have been granted with knowledge. I have a weapon against these twinges. Those weapons are the supplements that have been sitting on my kitchen table for 6 weeks. I chose to take a sabbatical for my Lyme & friends treatment. I had been in ongoing treatment for well over two years and I was exhausted. I gave myself a break. I pretty much have given myself a break since February when my PICC line was pulled. I wanted to see just how far I could push myself before I had to use these weapons. I haven't had an IV since February and have barely taken any oral supplements (with the exception of Protein shakes that I was heavily encouraged to make).

So now .. I take that step of courage to change the things I can. Last night, I courageously went over and picked up two new bottles of supplements. I filled a glass of water and drop by drop put these two new supplements into the water. Courage. I need courage. These new supplements taste nasty. I almost threw up the moment it hit my mouth. I learned one thing last night. Don't fill up a whole glass of water. Use about one ounce instead .. ;) (IE: Change the things I can).

Tonight I took my third dose of supplements. I am already feeling the effects. I am burning up and swollen. My head and teeth hurt. It hurts to breathe and I'm coughing so hard that my ribs and abs ache. My hands are shaky and it's only the 2nd day.

God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.

Our Live Blood Cell Answers

To review, I had a Live Blood Cell Analysis in September of 2008 to see how my red & white blood cells were doing.

In September this is what we saw:

"In the wet sample, she saw Lyme Spirochetes as well as Lyme Cysts in my white blood cells. One blood cell she looked at had four or five cysts in it. They were floating everywhere and eating some of my red blood cells. While we were watching, we saw one spirochete break off one blood cell and swim towards another. We also so many spots of Yeast. She said that Lyme and Yeast were definitely a concern. We saw several bacterial blobs that looked like a bunch of spirochetes bunched together with like tentacles (she called them blebs)."

Today: Show much improvement. Most of the white blood cells were clear and functioning properly. We saw a few bacterial blobs, but they weren't Too Numerous To Count (TNTC) this time. We saw areas of Yeast, but it was no where near like the last time. The difference between the Wet Sample last time and this time were astounding. I'm definately improving.

Now the problem was that I still had Lemon Drop Red blood cells. This means that I have Bowel Toxicity. I don't know how they know this, but ... that's what it indicates. There were also several spots on the wet and dry sample that showed Liver Toxicity. I need to work on cleansing out these two areas. Although, I will likely always have Lyme cysts ... if we work on the Liver & Bowels, then the yeast and parasites should improve. My Red Blood cells last time were all on top of each other. Also some had missing parts (IE my iron was missing). This time, they were mostly all intact and spread out the way they were supposed to be. An occasional Red Blood cell showed the Lyme Spirochetes.

My follow up just consisted of things that we thought we could do to help detox the Liver & Bowel. Also we are thinking if we clear this things up that maybe my bump problem will clear up too. He's *never* seen my bump problem on any of his patients. Aren't I special? ;0

Onto my husband's microscope:

For some time, I've thought that my husband has Lyme Disease. The last few months he's gotten sick several times including a major bout of bronchitis, the stomach flu and also once his lip got really swollen out of no where. He's had symptoms the last few months that really lead us to concern so we scheduled a blood cell analysis for him today.

My heart is very heavy over what we saw on his slides. His biggest issues are Lyme Disease, Cardiac problems, Parasites and Lymphatic Issues. The doctor said they were number 4 out of the scale of 0 to 4 (with 4 being the most severe). His Adrenal functions were about the same as mine and his Lyme cysts were on the scale of 3. He also has Liver Toxicity. I wasn't in the office with him during his blood cell analysis as I was in my follow up appointment. We plan on getting him scheduled into see my doctor as soon as possible.

The problem is that it costs about 500 to go in for the first appointment and today we spent about 1325 on the credit card. That doesn't even include the supplements that I will have to pick up over the next few weeks. *sigh* Here we go again.

There's the update.

Sunday update

Last week was a difficult week. Not only was I emotionally drained from my grandfather's poor health, I had a cold. It was not pleasant. I wasn't sure if I would have the immune system to beat it, but so far so good. I took all my immune building supplements and was reminded of one special supplement that I have and took it today as well. It is a supplement that I took for to kill bacteria, but thought it might be useful for this particular strain of whatever it is that I have.

Because it does kill the Lyme bacteria as well, the potential for herxing is there. For those not in the Lyme speak, "herxing" is the effect of when the bacteria dies and creates toxins. Those toxins make you feel quite lousy and sometimes it makes you feel even worse than lousy. I fear the potential of the "herx," but I know that I need this supplement right now. When I return from the beach, I will begin a new supplement. This supplement may also create the herx reaction. I received this supplement last week, but have been terrified to take it.

It's Prima Una de Gato. (Most know it's name by: Cat's Claw) It is so strong that I have to take one drop in four ounces of water. Then increase each day until I get up to five drops. Depending on how I do, I may have to increase very slowly. Oh the other thing that I had done a couple of weeks ago was have my lab work redone. I wanted to see if I could possibly get a positive Lyme test. Through Labcorp, they have a negative, equivocal and positive results. There are no specific bands to look at .. it just gives you an overall answer. I do not know what my Labcorp results were previously, but this time I had an Equivocal result. This means that the bands weren't strong enough to be a full on positive, but there was something there so they couldn't say it was negative. I am waiting on my IgeneX test results. Those show more details on specific bands.

I can tell that stress is playing a role on how I feel physically. I have had small amounts of joint and muscle pain. I have also had a significant amount of twitching. The weather has also played a small role. It snowed the 2nd day of March, then it was hot at the end of the week and now it's cold & rainy! It has rained most of the week. Rainy weather affects my joints and muscles. It also affects my moods.

I had so much fun at Congress on Wednesday, but I was exhausted & winded at the end of a very short visit. It taught me that I am definately not at 100 percent. I received a hand written letter from Senator Rouzer from Johnston County. He is the Senator that had just read my letter prior to me walking into his office. However, he was not available so we talked with his wonderful assistant. :o)

And props to my best friend. He always seems to know exactly what I need when I am feeling down. He always seems to call when I'm feeling my lowest and knows exactly what to say or do to help me get my chin up. Props to my other friends too. You guys all rock. You have no idea how much your support and prayers have meant over the last week. The phone calls, the IM's, the emails, the comments --- you guys have a special place in my heart.

Just so it doesn't throw you off guard, I plan to take a Time Out from blogging this week. My husband and I are going to the beach on Wednesday. It will be a huge blessing to get out of town. My mother in law will be a huge blessing to us and stay out our house while we go out of town. Her staying will allow us to go out of town without worrying about our dogs or phone messages. She'll be able to hear all of our messages so if my family calls about my grandfather. We will return on Sunday. I'm sure I'll have a lot to say when I get back!

I believe I will skip Not Me Monday this week. I know I've said it before and still participated, but I have a lot of packing and cleaning to do before I leave on Wednesday.