Hello. I'm new here - glad to have found this board. I was diagnosed with Rheumatoid arthritis in 1993. So long ago, I don't remember how they came to that determination, but I'm sure it was in my blood work (I'm trying to get all my old records) I had a lyme test back then and it was neg - don't know which one. I was living in CT at the time.
Last week my Naturopath suggested taking the Lyme test over again with the "bowen test". It came back positive for the Lyme bug (negative for the two parasites asscociated with it). The dilution was the highest it can be (don't remember the number).
So of course, now I'm rethinking everything... I'm hoping someone can help me here.
Is it possible that my "RA" could be Lyme disease?? I never had the rash, but I guess that doesn't mean anything. I do remember getting a bad flu-like like thing around the time the other symptoms started (I couldn't get close enough to the wood stove to get warm!) I also have digestive problems - IBS like problems. I have terrible recall - can't remember names or things and a very poor memory in general, and I say words backwards. That's pretty much all the Lyme symptoms I have (thought this might help) I also have a rash on my hip that I've had for years - not sure if this is related or not (it's not a bulls eye).
How does one make a Lyme diagnosis? Are there other things to look at besides the presence of the bacteria?
Can lyme disease cause blood work to look like RA - as far as immune system responses (c-reactive protein, sed rate, RF factor)?
I had a baby in September (she was born premature with a bacterial infection in her blood -hmmm) I'm still nursing - has anyone out there treated lyme while nursing?
Sorry for all the questions (maybe these should be separate threads). There's lots more, but I'll try to do some homework first.
If anyone can help me, I will appreciate it tremendously.
Thanks, Ellen
Posted by Cucamonga (Member # 2122) on :
I started getting symptoms in 1986! I was finally diagnosed in 1999--before I was being told I had MS....I didn't accept that, so I went looking. The first thing you have to do is find a Lyme-literate doctor. I'm in NYState, so I don't know anyone. THere is a way on this site to get help finding a doctor, or else put out a call for help. There should be a local support group that can help....
Good luck.
Posted by Cucamonga (Member # 2122) on :
Y'know, I HAVE LYME DISEASE!!! I think I write something correctly and intelligently. And THEN I just read what came up as my reply to you!!! Not at all what I wanted to say! I don't know where you LIVE, so I can't recommend a doctor... My doc is in NY state... Try local support groups or put out a call on this site.
Sorry for my unintelligible mess from before!
------------------ Cucamonga
Posted by riversinger (Member # 4851) on :
Hi Ellen,
Your story is similar to mine. I became very ill in 1993, with most of the symptoms you describe. Because my bloodwork for RA didn't fit, it wasn't till 2002 that they were beginning to talk about seronegative RA for me.
I was diagnosed with IBS, fibromyalgia, CFIDS, and a host of other things. Finally in 2003 I was tested for Lyme disease and came back very positive.
I never saw a tick or had a rash either. This actually happens fairly often, resulting in folks like you and me who have long term, untreated infections.
Some Lyme folks do have elevated bloodwork for RA, so that does not disqualify you. In fact, many RA people are having good luck taking antibiotics long term, per the Road Back protocol. I suspect many of them may have Lyme infections, though some have mycoplasma.
I'm sorry to hear about your baby's troubles. It has been proven that Lyme can be transmitted congenitally, so it is possible that she has Lyme.
There is an excellent pediatric Lyme doctor that I suggest you contact. He has given permission to post his name on this board. (We don't usually post doctors names on the board.)
Dr Charles Ray Jones New Haven, CT Phone: 203 - 772 - 1123 FAX: 1 - 203 - 772 - 0682
You can call and get some advice, and he will often consult with a local doctor.
You should know that some people have found it possible to pass Lyme to your child through breastfeeding, and it is not usually recommended. If you do a search on the board you will find discussions on it.
Here are a couple of links to information on Lyme tranmitted in breastmilk, as well as the possibility that it is sexually transmitted.
I recommend that you find a Lyme Literate Doctor to treat you. Lyme is not a well understood illness, and you want someone with experience, and success in treating their pateints.
I'm very sorry to hear that you have Lyme, but glad to see you have found Lymenet. You will find lots of help and support here.
Posted by Kara Tyson (Member # 939) on :
Not only can it be tranmitted in the womb but you could possibly be infecting your child through your breast milk. It is a personal choice..but if it were me it would not be worth the risk.
Posted by mlkeen (Member # 1260) on :
Yes Ellen- Lyme can look like RA. I have a friend who was nearly wheel chair bound with RA. Her doctor, whether the original or another I forget, re-evaluated her and put her on abx. She is a new woman. I ran into her husband a couple of months ago. He is so thankful to have his wife back!
If Bowen labs says you have lyme I would go with that. They are very accurate. The diagnosis ican be clinical especially if blood work is negitive.
Oh- Welcome to lymenet. There are wonderful articles to read here aboit lyme, it's treatment and co-infections.
[This message has been edited by aaronkatie (edited 06 June 2004).]
Posted by Aniek (Member # 5374) on :
Ellen,
Welcome to the board.
I never tested positive for RA, but I did probably go 17 years before being diagnosed with Lyme. So that part of it is possible.
There is also no known cause for RA. I have more fibromyalgia symptoms, that my LLMD calls reactive arthritis. Her theory is that, in certain people, chronic infections can trigger the reactive arthritis reaction. Who knows, maybe in others it triggers RA or MS reactions...