My LYME test results (ECDS)

[alsn13]

Hi I got my test results 2 weeks ago and I would like to share and discuss about it with you guys.

So I had 3 tests and those were:
chlamydia pneumoniae igg/igm by elisa- negative
mycoplasma pneumoniae igg/igm by elisa- positive
igm pos=1.52
igg pos=3.35
Lyme western blot- positive
iggcdc neg
iggalt neg
but igmcdc pos
igmalt pos
and it says igm:41, 23 and igg:41

I do not know how to analyze the results and would like to ask if anyone can explain this to me.
I am also wondering when I got lyme and mycoplasma because when I started to have an en coup de sabre symptom on my forehead and scalp, it was almost 20 years ago and I was in Korea at that time. Back then, there wasn’t anyone who had a lyme disease in Korea.
Would this still tell my ECDS is lyme induced? or from other causes and lyme affected my immune system more badly?

My lyme doc prescribed me azithromycin 250mg. Doctor says we will go slow because we don’t want herxheimer reaction.
Doctor will follow up to see how I am tolerating medication after 2 months and will consider if there are no changes then either switching or adding minocycline.
Hope I am on the right track to cure my disease.

Also I went to my skin doctor and he prescribed me cellcept. He said he is not against with AP therapy but it is still controversial if it can help or not help. He also mentioned about why taking antibiotics for a long time is not great. I could not understand everything since English is my second language. I want some help with this from you guys.
I also will take MRI next month to see if there are any brain involvement. My doctor says it will be better for me to be on cellcept if there are any inflammatory in my brain or eyes.
In a while, I will just take azithromycin for now and see.
What do you guys think?

[Lynne G.SD]

Hi;
If you have Lyme your immune system is already suppressed and if you add a med that does the same thing the bugs will breed like crazy.This just goes to show how docs don’t know didly squat about Lyme.There is Lyme in Asia but if my memory serves me right it has differences.I would have to go find my notes and just too tired right now,worked too many hour in the garden in full sun that must have fried my brain
Maybe this will help
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/61532-breakdown-of-igenix-test-bands

[Maz]

Hi alsn,

Lyme Disease is a global phenomenon and it’s an ancient infection, found in fossilized ticks in amber. Here’s one study out of Korea in 1993 but plenty more on pubmed.com you might like to research. Just use key words, “Lyme disease Korea” and a couple pages of Lyme research for that part of the world pops up. Thing is, researchers may not have been aware of the presence of Lyme in your country decades ago, but “absence of evidence is not evidence of absence.” It just means no one was looking for it.

Lyme identified in Korea in 1993

Lyme is a waxing and waning illness so, when reactivated and spirochetes have re-emerged from latency, it may appear as a fresh infection (IgM). The bands on the western blot represent your body’s antibody response to specific outer surface proteins (OSPs) found on the outside of the Lyme bug. There are numerous worldwide strains of Lyme, but the CDC approved test only looks for one. Igenex looks for two. Band 41 is non-specific by itself and represents the proteins found on the flagellum (whiplike tail) of a spirochete, but it could be any spirochete….trepenoma denticola, h. Pylori, syphillis, etc. Band 23-25 represents OSP C and is highly specific for the Lyme bug. Band 23-25 in combo with band 41 on IgM is a positive result for Lyme. The thing to remember is that ticks are nature’s dirty needles and pass more than just Lyme, so coinfections in the sickest patients are the rule, not the exception. Lyme is highly immune-suppressive, too, as it subverts immunity by taking over normal cellular functions in self-preservation and can change its OSPs so quickly that the immune system is tricked. Lyme is a shapeshifter, able to change from cell-walled, to cell wall-deficient to dormant cystic forms very rapidly, which is why it is such a pesky bug to test for and treat. Lyme docs will most often use combination abx therapies to hit all forms simultaneously, but these days some Lyme docs are taking a less agggressive approach, realizing that the end game is to kill the bugs, but not at the expense of the patient. By adding one antimicrobial at a time, it’s also easier to tell if one treatment is helping or causing unwanted side-effects. Your Lyme doc seems to be taking the cautious approach.

Re: cellcept, I’m on the same page with Lynne regarding infection proliferation. It’s a powerful palliative drug that comes with serious side-effects in the long term. It might be useful short term if you have internal involvement, but can only share that if I was in your shoes, I would get as educated as I could to make the most informed treatment decision possible. There is no right or wrong with this….just informed patient choice. If I were to choose Cellcept, I would still use antibiotic therapy because the two treatments are not mutually exclusive. With lowered immunity, it’s likely there would be an increased disposition to infections anyway, but my goal would be to get my symptoms to a point where the Cellcept could be tapered, so that I was just on abx therapy. Besides, does anyone know the long term side effects of Cellcept? There have been SDers who have been on minocycline for over 30 years, they are still alive, in remission, and doing well….one of whom is the foundation co-founder, Pat Ganger (in the book) and the current president’s daughter….both of whom had systemic scleroderma but are leading fully productive, healthy lives. Richie, here, has been on minocycline for….what is it now?….18 or so years?

Best insight for you….read the books mentioned on the website, including Cure Unknown. Decide if an infectious cause makes sense to you. If not, Cellcept may be your preferred option. If infectious causes do make sense, then it’s a no-brainer to use abx therapy. If afraid about choosing one over the other, then both approaches may make sense to you. Ultimately, it’s your body, your right to choose, and you get to decide what to put into it, but do what you can do to get informed before deciding.

[Lynne G.SD]

I had,probably still have chronic Lyme as well as SD.Fix the Lyme problem and it will fix the SD at the same time as the tetracycline family as well as Zithromax inhibit interlukins 1 and 6(SD) and stop TGF1B( fibrosis)
I will have been on AP 19 years in Nov and doing fine.Just wish AP would reverse aging.UG!!!

[Author]

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