Hello everyone, My name is Rodica and am new to this board. I hope to get some insight into a possible misdiagnosis of lyme as RA(which is NOT a definitive diagnosis, only a working diagnosis) I have been on minocycline for almost a year now, and it seems to keep the inflamation in my right wrist in check, but NOT cure it completely. I had the BOwen test done which shows BB bacteria at the highest possible levels, but the Western Blot is negative! All the doctors I've seen will not treat me for lyme if these traditional tests are not positive. I am taking the minocycline supposedly for RA and it is the ONLY medication that works. I had a rare cancer in 2004 and surgery. The RA? sysmptms were post op.I believe my immune system is not responding that's why I do not produce any antibodies and the Western Blot is negative. Does anyone know a LLMD in the Philadelphia area or ANYWHERE??? If you could help me please email me directly. [email protected] Thank you
Posted by Lymetoo (Member # 743) on :
I believe my immune system is not responding that's why I do not produce any antibodies and the Western Blot is negative.
That's probably "it" in a nutshell.
Do you have a copy of that test? Do you know which bands showed up?
You could have ONE lyme specific band show up and it would mean you have Lyme.
Come back and post your results here if you can.
You won't find ANY "regular" drs [we call them ducks] who will treat lyme long term. I"m very surprised you found someone willing to give you minocycline long term.
Have you read this?
When to Suspect Lyme Disease http://tinyurl.com/lx2pz Posted by CaliforniaLyme (Member # 7136) on :
Did you get a transfusion or plasma or anything>?
Babesiosis, often a coinfection of Lyme disease, is a major problem for the US blood supply, can test seronegative but appear in recipients of blood products. I would really get tested for Babesiosis and consider a "challenge" run of oral Artemisia which can be bought at health food stores to see if you have a Babesial infection. It is interstingly that the RA appeared post-op- could be from an immune system shock of the surgery- which could be any TBD including Lyme- but could also be from Babs-
W E L C O M E ! ! ! ~! !*)!*)!*)!*)!*)!*)!*)!)!
Nice to meet you, Best wishes, Sarah in CA
Posted by CaliforniaLyme (Member # 7136) on :
1: Vox Sang. 2006 Apr;90(3):157-65. Links
Babesiosis and blood transfusion: flying under the radar.
Leiby DA. Department of Transmissible Diseases, Jerome H. Holland Laboratory for the Biomedical Sciences, American Red Cross, Rockville, MD 20855, USA. [email protected]
Infectious agents of disease continue to plague transfusion medicine as an increasing number of pathogens are described that pose a potential blood safety risk.
While the recent focus has been on newly emerged agents, several well-established pathogens provide timely reminders that other agents continue to pose threats, but invariably 'fly under the radar', thereby failing to elicit adequate measures to prevent their transmission by blood transfusion.
Perhaps foremost among this group of agents are the Babesia spp., which have been known to cause human disease, in the USA, for close to 40 years. B. microti, B. divergens and several Babesia-like agents are responsible for a growing number of human babesiosis infections.
Concomitantly, in the USA, there has been a sharp rise in the number of transfusion-transmitted infections of Babesia spp., attributable almost exclusively to B. microti.
Despite the obvious public health issues posed by Babesia spp., options for preventing their transmission by blood transfusion remain limited. However, recognition that the Babesia spp. are indeed an ongoing and expanding blood safety threat will probably prove instrumental in the development of viable interventions to limit transmission of these agents.
PMID: 16507014
Posted by bettyg (Member # 6147) on :
welcome rodica to the board,
i suggest BLOCK COPYING your entire post here, and post it in SEEKING DR. section ... just paste it there.
we use PM, private message, feature here to send info to you. you have ENABLED it so we can send you this way and we are able to keep secret our home email addresses. there are reasons for this .... trolls/troublemakers who are healthy who attack our board daily.
rodica, i'm NOT saying you are a troll; just we do have them coming here daily. so we use the PM
i'll send you my 44 pages of newbie links/advise/symptoms, etc. now by PM.
also, check left hand side, support groups, for your state. click on group closest to you! see what it says there about calling them or EMAILING them per THEIR instructions ok!
glad you found us; you will learn a lot here. majority of us have RA and many other thigns. Posted by tdtid (Member # 10276) on :
Am not a doctor, but just another suffering lyme patient. Oddly, before my lyme diagnosis, my Rheumotoid factor test was positive as was another member from our NH local support group.
So I do believe there can be a connection. I'm on my third antibitotic and just started treatment and in the pharmacy literature, I noticed they said they give this med also to Rheumatoid Arthritis patients.
It also helps for lyme, but as others have suggested, you could also have co-infections, most likely atleast babesia, so my recommendation would to be to get to a lyme SPECIALIST as soon as possible.
As most all of us can attest to, getting any other doctor to take this seriously or treat long term lyme is next to nil. Do yourself and your health a huge favor and post over on the doctor section to find a doctor closest to where you are.
If nothing else, he or she can sort through this much better than the usual non-specialist. Good luck and keep us posted.
Lyme is known as one cause of RA. RA itself is not a disease. It is not a bacteria or a virus. It is just the name of a disorder, cause unknown. If you research it, you will begin to learn there are many possible causes and for many people, eliminating one or more of these causes eliminates the RA.
Minocycline is a popular drug for the "infectious cause" theory. However, it targets mycoplasmas and is most successfully when used in low doses and pulsed (taken intermittently) I take 100mg MWF. Supposedly the mino is most effective against the mycoplasmas on the off day.
I do not feel it has had much impact on my RA. I feel other avenues my doctors are pursuing are much more successful.
If you would like to know more, please pm me. I really have to get ready for work right now.
Luvs
Posted by janet thomas (Member # 7122) on :
the se PA lyme group will give dr referrals-i think they're at www.lymepa.org Posted by shazdancer (Member # 1436) on :
Hi, Rodica, sorry to say it sounds like you've had more than your fair share of health trouble. I hope you will have better days ahead. And yes, the stress of surgery could trigger a latent Lyme infection into a symptom flare. Maybe you want to keep calling it RA to keep the mino coming!
Best wishes, Shaz
[Shaz makes mental note that minocycline is given long term for RA, and for acne, but the IDSA wants to deny it for the pain of Lyme disease...sheesh!]
Posted by 5dana8 (Member # 7935) on :
Hi Rodica
Welcome to lymenet!
Sorry to hear you are having problems If you suspect lyme & test negative- Here's an article wtitten that explain reasons why you can have lyme disease & test negative for it:
You may have to travel out of state as many of us here do to find a lyme literate doctor.
Just hoping you can feel better soon Blessings Dana
ps: if you back and click on edit-(the piece of paper with the pencil) on the top portion of your post ...
you can check the box at the bottom of your post that says "E-mail Notification"...that way the posts come right to your e-mail box-if you don't log on to lymenet very often
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