I have only 3 reactive bands on western blot. Bands 18, 28, 41. PCR neg, C6 peptide by elisa neg. On Doryx since 6/24 palpitations and eye twitching almost gone still have enlarged lymph nodes and visual changes, cracking in neck. Any thoughts??
Posted by Keebler (Member # 12673) on :
- Stay away from Infectious Disease doctors - and any doctor who bases diagnosis and treatment on the the faulty IDSA & CDC guidelines. These doctors ignore lyme, they are ignorant about its complexity and will never treat it adequately.
They are also ignorant regarding the full range of tick-borne infections.
Find an ILADS-educated Lyme Literate MD (LLMD) for a proper assessment with a clinical examination. -
Posted by Keebler (Member # 12673) on :
DVD is $35 and worth every penny. It explains a lot about the political horrors patients face when looking a LLMD - and the harassments that LLMDs face.
Cure Unknown: Inside the Lyme Epidemic (2008) - by Pamela Weintraub
This details what an entire family went through in trying to find knowledgeable doctors. Having this knowledge of their journey will help others to get better, faster treatment.
Well 41 is flagella on a spirochete (not lyme specific). Not sure if 18 or 28 is lyme specific.
Did the WB include testing for bands 31 and 34?
You indicated reactive was this positive or equivocal? Now I'm only asking as band 41 is usually the 1st to show positive and it still may be early for the others to show at all.
You need to see a Lyme Literate Doctor.
Posted by Lymetoo (Member # 743) on :
You're improving with treatment... stick with it or you will suffer terribly the rest of your life!
Find an LLMD!
Posted by Tincup (Member # 5829) on :
Roseanne Roseanna danna...
If an IDiot duck said you had Lyme you'd have to call 911 immediately cause sure enough a number of us would be having a cow!
Forget the test... over 75% are being missed with it. It is nothing but a cash cow for those who hold the patents, promote it and market it.
Although you didn't go into much detail, you might also want to consider Bartonella.
For more info.. see the listing about tick borne diseases and lab tests here.
Stop going to ID docs people--stop it!!!! Stop it! STOP IT!!!
LLMD or other lyme literate practitioner--FIND ONE!
I'm beggin' ya! Beggin' ya!
Posted by 'Kete-tracker (Member # 17189) on :
rndanni, Ask that doctor why the Heck your body went & made "18 kPa"-sized antibodies if you were never infected with Borrelia Burgdorferi (Lyme spirochetes) at some point in the past! ...RECENT past, if it showed up on the IgM panel.
The "18" band IS Lyme-specific, or- more accurately- it is a "known Borrelia Burgdorferi genus specie specific KDA Western blot" band. (Whadda mouthful. )
On 2nd thought, don't waste your time.. and $$! He'll say something like "we found evidence that part of the creature was present but not enough pieces to confirm it."
Think of it this way: The Western blot tests found antibodies that bind perfectly with the trunk of an elephant. Chances are real good there were elephants!
TAKE a copy of all tests (Esp. that one) & go SEE a Lyme-literate doctor. If you're multi-symptomatic, where the symptoms are consistent with Lyme disease, MOST LLMDs would take that test result as confirmation of exposure to Lyme, hence would be pretty confident in their clinical diagnosis... and start you on antibiotics pronto.
(Even IF that I.D. doc found you'd tested CDC+? He'd most likely give you no more than 30 days of abx. You won't get well, & STAY well, with 30 days worth. No Way.)
Posted by 'Kete-tracker (Member # 17189) on :
Sorry, I misread your note. You ARE on a form of doxycycline. Great! Still... go find a LLMD.
Very few I.D. docs find reason to continue antibiotic meds past 30 days for Lyme. (There are exceptions, like Dr. D in Boston)
You'll probably end up on symptomatic relief medicines... and will stay sick.
Posted by zil (Member # 12048) on :
Your symptoms say tick infection. Your improved symptoms with lyme treatment says tick infection. You may not have a CDC positive western blot but you do have positive borellia bands. Hmmmmmmmmmmm......just some thoughts.
Posted by massman (Member # 18116) on :
Keebler - aren't we supposed to call vets when we are having cows ? Posted by Keebler (Member # 12673) on :
- massman,
I do not know what you mean (you asked if we are not supposed to call vets when having cows). I did not mention either vets or cows. I don't think anyone else did, either. Hmmm. -
Posted by dmc (Member # 5102) on :
Keebler,
Tincup said "If an IDiot duck said you had Lyme you'd have to call 911 immediately cause sure enough a number of us would be having a cow!
That's where Massman referred to regarding "shouldn't we be calling a vet"
Posted by Tincup (Member # 5829) on :
Posted by Robin123 (Member # 9197) on :
This is not a MOOOOOO-t point about calling a vet if anyone's having a COW over the ID DUCK not recognizing Lyme test results/symptoms. Vets do a better job recognizing Lyme...
mdanni, if your eye symptoms continue, I found that mangosteen juice can stop mine. It's an anti-inflammatory antioxidant juice. There are lots of brands. If you try it, drink water too.
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