posted
I am also interested to know how everyone on the board was diagnosed with Lyme. I had 3 positive bands on the western blot and many of the clinical symptoms (although nothing obvious like the massive knee swelling you read about). I'd like to get retested, but I am reluctant to get off the abx.
My LLMD is not certain it is Lyme, but thinks it is likley and is treating it as such anyway. Other doctors (even one who was LL) would not have treated me at all becasue I did not have the requisite 5 bands. I am interested in others' experiences to help confirm my diagnosis. Thanks NH Steve
Posts: 5 | From NH | Registered: Feb 2006
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posted
1) Your LLMD was ill informed if he would use CDC standards
2) Keep getting the treatment and don't worry about the test. The idea is to get well, not prove anything to anyone. Be sure to take abx (both kinds) till you have no symptoms for two months.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
My LLMD is the one who is treating me; it was the other doctors who were too focsed on the CDC criteria. There are many of these doctors out there.
I have been on Vibramycin, Plaquenil, and Clarythramycin for about 6 weeks now. Are these the abx you refer to?
Posts: 5 | From NH | Registered: Feb 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Only band 41 ib igm was positive in my case. Yet my doctor has been treating me for three years and, based on clinical improvememnt, has no doubt it is Lyme disease. I went undiagnosed at least twelve years and so am probably chronic. I don't expect to be cured but manage to keep myself pretty much asymptomatic with antibitics and supplements.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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You don't mention which bands were positive. You say that 5 +'s were required so I'm *** -uming that you are talking about the IgG half of the Western Blot.
Each band has it's own significance and depending on which ones you have, could mean you absolutely have LD.
Have you been checked out for coinfections.
The big swollen knees don't actually happen that often.
You should check out the newbie links. There's a lot of info about symptoms and the bands on the western blot in there.
Do you have any idea why your LLMD doesn't think you have Lyme? That would be a good question for your next conversation.
As far as your antibiotics...who knows. Different people respond to different things. It's pretty much trial and error as far as that's concerned.
Plaquenil can cause retinopathy so before I started taking it, my LLMD had me see an opthomologist. It's good to have a baseline in case any eye troubles should occur.
Hope this helps,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
I was positve for Igg Bands 28, 41, and 58. My LLMD does think I have a Lyme-like infection, which may or may not be Lyme. All he says is that most or all of the patients he has seen with my condition and symptoms have responded to abx. We have discussed the possible retinal damage from Plaquenil, but he does not recommend seeing an eye doctor for 6 months.
I have been investigating possible coinfections, but I am uncertain as to what tests are used to diagnose them (bartonella, babesia). Any help here would be appreciated.
I'll check the newbie links too.
Thanks
Posts: 5 | From NH | Registered: Feb 2006
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bettyg
Unregistered
posted
Steve, Glad you took my suggestion and started a new thread with your questions, so you receive replies back!
Me, undx for 34 years; began at age 21 with mono and chronic fatigue followed by fibro pain and EXTREME noise/sounds & eye sensitivity to lights, glare, & reflection, plus IBS, etc.
fall 03, I went to a meeting featuring Dr. Scott Taylor, vet, speaking about fibro, CFS, etc.. I didn't know it was a LYME support group meeting until I saw the notice on door! I listened to Scott talking about all the fibro pain & pressure points. That's where I learned LYME folks have fibro pain, etc.
Scott also talked about Igenex's western blot igm/igg blood tests for lyme dx. I would NEVER have tested for lyme had it not been for Scott. The 40-50 drs. I'd seen NEVER MENTIONED LYME as a possibility for my not being able to get well.
My mind/memory has continued to fail, and I was experiencing ALL the symptoms of early-onset Alzheimer's/dementia! My late sister-in-law, 40, YES 40, died of AD in 93, and had it between 8-14 years. She was treated for severe depression. Her autopsy took about 5 months from Mayo Clinic. So I knew ALL the symptoms only too well.
So I decided I would test for lyme to rule that out before undergoing AD testings. I'm still SHOCKED it turned out I was positive for igm/igg both.
Then my PCP gave me the clinical lyme dx after the positive IGX testings. He was shocked; I was his 1st lyme patient. So he's read some material I dropped off for him early on BEFORE I even suspected I had lyme.
abx: since 8-04 pulsing for 1.5 yrs.
doxy for 3 days, 2 days off then biaxin for 3 days, 2 days off then back to doxy
1-06, LLMD also added flagyl now...every other day. My poor calender with all these special abbreviations on for me to check off daily since I was up to 19 MEDS! I told him I wanted to eliminate whatever we could...he found 1 then added 2 more! go figure.
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Another Band 41'er here.
I had no other positive bands but improved with long term antibiotic treatment for LD and mycoplasma (which I recommend that you also get tested for).
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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