Lyme Dx and Letter from Rheumatologist

[jltntl]

When I got my positive PCR result I thought I’d call my rheumatologist and inform him (I had never mentioned Lyme to him before – and our government says there is no Lyme in Australia). He seemed interested but concerned I continue with the MTX. I assured him I would and also added that my syd gp wanted me to continue on it also. But then a couple of weeks later I got a letter from him – copied to my local gp and my lyme/thyroid gp in sydney saying:

quote…

Thank you for your call regarding your results for the Lyme disease blood test.
They are very interesting. However, I do not think they constitute evidence of
Lyme disease. People with autoimmune diseases like rheumatoid arthritis
frequently have false positive serology results for a whole range of infections
and I think this is the case now. The fact remains that you have seropositive
rheumatoid arthritis. I would urge you to continue taking your methotrexate and
remind you that you might require additional anti-rheumatic medication to
control the arthritis. I would caution against the prolonged used of
antibiotics which will have no effect on your arthritis and may well cause side
effects.

…unquote

I’ve been told that PCR is not serology test. He has been quite a nice helpful doctor until now. I’m still thinking of my response to him.

[Maz]

@jltntl wrote:

I would urge you to continue taking your methotrexate and
remind you that you might require additional anti-rheumatic medication to
control the arthritis. I would caution against the prolonged used of
antibiotics which will have no effect on your arthritis and may well cause side
effects.

…unquote

I’ve been told that PCR is not serology test. He has been quite a nice helpful doctor until now. I’m still thinking of my response to him.

Hmmmm…these links might help to support your case:

http://www.rheumatology.org/publications/hotline/archive/0195minocycline.asp?aud=mem

http://roadback.org/index.cfm/fuseaction/education.display/display_id/116.html

https://www.roadback.org/EmailBlasts/ebulletin_fall10.html (see Dr. T’s article and ACR press release)

viewtopic.php?f=1&t=6051&hilit=resistance

http://www.jrheum.com/abstracts/abstracts06/224.html

I can probably find you some more links if you need them, but these links contradict pretty much everything your rheumy is saying…on the contrary, tetracyclines have been proven safe for longterm use, infectious causes have been tied to RA in numerous studies, and tetracyclines do not cause resistance and are a far safer, more benign choice than conventional rheumatologic immune-suppressants. 🙂

[nspiker]

Julia,

I had to chuckle reading your quote form the rheumy 😆 .

Isn’t it sad , but true, that they actually believe antibiotics are more harmful than immune suppressing drugs. I continue to be flabbergasted by our medical system!

I wish I had some wise words of wisdom, but unfortunately your doctor is in the majority with this kind of response. A Rheumatologist my MIL consulted with scared her so much about the dangers of overuse of antibiotics, that she is afraid to continue AP. Another rheumy, who specializes in SD, actually said that her SD was a “light case” and would probably go away on it’s own. And we put our faith in these doctor to get us well?

Let know know what kind of clever response you come up with… 🙄
nancy

[hmom]

A positive PCR test means that genetic material identified as Lyme DNA was found! This is vastly different than antibody (serology)testing. Wikipedia says false PCR positives do occur due to poor lab technique, but I can’t see how that would have any connection to whether or not a person has an autoimmune illness. (Are they somehow able to generate fake Lyme DNA???) This is pretty basic infectious disease knowledge, which sadly goes to show the down side of medical specialization. Whatever happened to intellectual curiosity? Sigh. You might ask your rheumatologist, among other things, if he ever wondered how those “false positives” were determined to be false…

I really wonder sometimes if “mainstream” rheumatology will be seen someday as on parwith leeches and blood-letting ❗

[Trudi]

@hmom wrote:

I really wonder sometimes if “mainstream” rheumatology will be seen someday as on par with leeches and blood-letting ❗

😆 You are too funny!

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Author]

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