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Tuesday, October 28, 2008

My Igenex Western Blot Test Results

I'd like to point out that according to my LLMD, when your immune system is supressed by Lyme which can be evident with CD57 blood test (mine is 28;normal is 60-360) that you are not making the antibodies that the WB is looking for. This leads to a lot of false negatives.

Igenex Interpretation is based on internal validation studies. by Igenex criteria, IgM Western Blot is considered positive if 2 or more of the doubled starred bands below are present. By CDC/NYS criteria, IgM WB is reported positive if 2 of the following bands are present: 23-25, 39, 41. The CDC/NYS refuses to allow the labs to report band 31 and 34 because they were used to make the vaccine, which was only on the market a short time (people got sick so it was removed). Obviously, I haven't had the vaccine, so the reporting of these bands are imperative. The CDC/NYS decided that these were the most common bands, therefore designing a vaccine with them. The thing is that now they are not included in test results, by the request of ignorant groups. Since diagnosis by positive test results is so important to ill people, a literate MD and good test results (mine were good through Igenix, they include the bands.) are needed so we can get correct treatment. Make Sense?

Igenex IGM Result = Positive
CdC/NYS Result = Negative (if band 39 were a positive, I would be CDC Positive)

kDa. 18 Neg
22 Neg
**23-25 Neg
28 Neg
30 Neg
**31 Pos++
** 34 Neg
**39 IND(Means something is there, but not enough to call positive, but not negative)
**41 Positive +++
45 Neg
58 Positive +
66 Neg
73 Neg
**83-93 Neg
Igenex IGG Result = Negative The IGM antibodies turn into the IGG antibodies over long exposure. Indicates a long time infection.
CDC/NYS Result = Negative
** 39 Indeterminate
**41 Positive +++
All others Negative

Monday, October 27, 2008

Herx reaction.

So I just started treatment of Lyme disease (Borrelia Burgdorferi) and a co-infection, either Babesia or Bartonella. Stay on the look-out for what protocols or treatments I am on....

The scoop behind the Herxeimer (Herx) reaction all began when Dr. Herxeimer discovered that Lyme, when subjected to something that harms them like Antibiotics (ABX) or the herbs that FIGHT the bacteria (spirochetes), produce a protective film. Basically its a toxin to strengthen themselves and fight the enemies. This toxin soon makes the body feel like crap, to simply put it. Like all other chemical waste, it gets filtered through the Kidneys and Liver where the bile is suppose to join up with it, and then be sort of a tour guide on its journey to the toilet. When Lyme backs up ones intestines, the bile and toxin are reabsorbed and put back on a trip to upset your symptoms, and less bile is produced because of the old stuff hanging around. This is when you are very sick, all because of the Lyme Treatment. Some peoples are worse than others, mine happens to be annoying!

For future reference to those who are curious, my Herx so far has just been a flu-like attack. I get flushed and hot (without a fever), my headache boosts into migraine mode, lights attack my pupils so I stay pretty dark, and sound provokes my extreme nausea. I get dizzy (vertigo) and extremely weak, with a bucket by my side just in case. I do not end up puking though, thank go0dness!

To help with this absolutely crumby feeling, I take a couple different substances. First I take a pill called Welchol. It is supposed to absorb any medicine or toxin, so it must be taken 1 hour away from other pills (hard to plan the day out with 5 different sets of pills and a specific spacing between). The Welchol is a cholesterol pill, so thankfully it stops the re-absorbency of Bile and Toxins. Another herbal substance is Calcium C powder. Mix it 2 tsp. to some water, chug it down, and naturally you have yourself using the bathroom and increasing Bile production (very good since more bile absorbs more Toxins). Its nasty though! I also started taking Charcoal pills since they are natural and bind to the chemicals too. I haven't determined whether they help or not yet, but I'm pretty sure they will. An M.D. usually uses it if a kid is intoxicated by a harmful substance, and they need to get it out of the body.

Well, hope you liked this and the explanations I pulled from my little brain. I have this information based on 'Under our Skin'
the film production that sums up all scientific and political battles with Lyme, and the books that my mother reads to me sometimes. Oh yeah, and the LLMD.

Sunday, October 26, 2008

1st sleep study

After not sleeping well for a very long time, I finally had a sleep study. They said I have obstructive sleep apnea. This can be genetic. My grandmother has it. This can also be a symptom of Lyme or co-infections. My LLMD thinks that when I'm treated successfully it will go away. I hope so. I have to get a machine and go back for a 2nd sleep study to set the machine and see how it works.

Besides that, I have trouble falling asleep and sometimes lay awake for 2-6 hours per night.

I've elevated my head (the bed inclines) because of the acid reflux. I've tried soft music, lavender, softer bed, melatonin, fans, just everything to get a good night sleep. It seems I feel my worse at night which made it hard to attend school, getting up at 6:30am.
stay posted for second study and more...

Therapy so far

  • I tried the Chiropractor first.
  • Then physical therapy.
  • Next I found Total Body Therapy, or crainal sacral therapy. This has been the most helpful for relaxing the muscles in my neck and shoulders. They always hurt.
  • Hippotherapy is the best! You ride a horse and use the motion to facilitate exercises which are fun and don't really seem like exercise when riding. It is very theraputic for me.

How it all started.....My Lyme Journey (Medical Stuff)

October 2007, during soccer season, I came down with what I believed was a bad virus. I was out of school a week, then felt OK the next week, then sick again on week #3 and went to my pcp. She presumed it was a sinus infection and I was given a Zpac. Felt somewhat better on week #4, but then sick again for week #5 and given Bactrim. I had a reaction to the Bactrim(hot flashes, flushness, achy), so we stopped it. Still feeling sick and missing school the following week so I had a CT of the sinuses. It was clear. I had pain behind my eyes, headache 24/7, sensitivity to sound and light, fatigue (we tested for mono multiple times, all was negative) and just didn't feel well. This just went on and on.
Brick wall #1- My headache was so bad and the pcp didn't want to do anything else without further testing, so she told me to go to the emergency room and they could get the test approved quickly. We traveled to the "best" brain hospital in NH, and the emergency room DR was the rudest and most unprofessional I had seen (up to that point). He said," I don't know why you are here. It's just a headache!" He actually called my pcp to figure out why she sent me and then did run a CT of my head. When it came back clear, he pulled me into another area away from my parents to wait. Then he proceeded to tell my parents that I need therapy and kids can mimic their parents symptoms for attention. I was so upset. Little did I know this was just the beginning of this mindset.
When I returned to my pcp to follow up on what to do next, because I still had this 24/7 headache, she also began talking of therapy for me (she did try me on a short time of Zoloft!). My mom stood firm and quickly changed pcp's because we obviously didn't have the same point of view on my illness.
I had been seeing a Gastro Doctor for years and was again, since this illness, having stomach pains and nausea as well as not sleeping well. After a while we finally did an upper GI(clear) and an Endoscopy(multiple peptic ulcers, bile reflux). I tried several medications, with no help for that. She finally put me on Nexium (after pepcid, cyproheptadine, and other acid inhibitors didn't help) and said I had to get to the bottom of the headaches because they must be causing the stomach problems.
Enter Pediatric Neurologist #1- He said I had "Chronic Daily Headache" and there was no test to run, no known cure, no known cause except maybe viral, and we would try and manage the headache with medications. I was a guinea pig. After he took me off the Zoloft, I tried Amytriptaline, Topamax and Depakote. Then he said he couldn't help us anymore and we had to find another Dr.
Enter Pediatric Neurologist #2- He had no real diagnosis either. He did run an MRI-MRV (clear) and told the PCP to run a thyroid test, ana, and crp. He suggested Steroids, but my mom said NO. If it is Lyme it would be a huge mistake. He said he would wait for us to investigate the Lyme. He suggested Biofeedback(another method of just dealing with it). Ugh!
So back to the pcp#2 who finally ran some BLOODWORK after 9 months! Mono(neg), Anemia(neg) Lyme(neg) ANA (POS). Physical (non eventful). Another referral....
Pediatric Rheumatologist- Right off the bat, I need counseling. It is all in my head. I had a little Fibro- like symptoms, but she didn't want to "label" me because with the right attitude and putting on a "happy face" in the morning, I could over come it! WWWWWWWHHHHHAAAATTT????? She was a nut case. I told her we were waiting for the Lyme results to come back and she said she was familiar with Lyme and I didn't have it. She did the standard blood test, but was an evil person. I won't go back. CRP was elevated, but she figured it must be lab error. Sure......
Because of the overwhelming advice to see a counselor, I started seeing one to shut everyone up! She is nice and doesn't think I'm crazy at all!
Finally MOM started reading about Lyme and how inaccurate the tests are. She finally got me in to a Lyme Literate MD. He said we have to test at Igenex to start with. He did the CD57 at Labcorp and it was LOW 28 (normal is 60-360), Igenex had a positive IGM, but negative by CDC standards. IGG was negative. So we went a step further and did a Urine Blot Assay, 3 out of one was POSITIVE. Whew.....we finally had our official diagnosis last Monday after 1 year. He also believes that I have other tick born diseases Bartonella and/or Babesia along with Lyme.
Oh what a trip!