posted
I have recently been diagnosed with what the doctor thinks is rheumatoid arthritis. I say "thinks" because while all the results of the RA, Sed Rate and other tests ordered by my primary returned with positive results, my rheumatologist is much more thorough...and I like that about him. We are awaiting the results of the blood tests he has ordered. My next appt is April 17th when I will hear the answers and what protocol he has decided upon.
Therin lies my dilemma. I was very ill for about 8 years. After 31 doctors, numerous hospital admissions and tons of tests this rheumtologist, whom I had never met, took me seriously, listened to me, tested me, diagnosed me with Lyme (late stage by then) and had me on antibiotic therapy asap. Three therapies later I did begin to feel better...though never cured. Not ever. I still, however, feel a loyalty to this physician. He saved my life.
I now live in SC. Over the years I have been diagnosed with fibromyalgia, sleep apnea, IBS, epstein barr, sick sinus syndrome, panic disorder, severe depression..you name it, they say I have it. Since my bout with Lyme in the 80's and 90's and my SS disability being denied I have been angry with physicians, the government and my lawyer (whom, by the way, was from NJ. I lived in Pa at the time) Feel like they all added insult to my injury and now RA. OK, could be worse, right?
So, this doctor, whom I think the world of, wants to put me on all kinds of toxic drugs if he thinks it's aggressive RA. I am already supposed to be taking plaquenil and haven't taken it yet. I asked him why I couldn't take antibiotics since I feel as if I still have Lyme. He told me, "Not possible, the tests are negative." I thnk he's great but I just have this gut feeling that he's wrong this time and I am very afraid to take all these drugs.
Now, after my visit, I read on the internet about AT which I found out was antibiotic therapy. I couldn't believe what I was reading. These people actually think what I think, that the Lyme disease is still doing it's nasty work!
I would like to know what the people on this forum think. I do NOT want to be prescribed drugs that treat malaria or cancer or cause lymphoma etc etc. I can deal with antibiotics. I really am concerned as I know RA can damage lungs, heart etc and I want to trust my doctor but I have brought up the subject of antibiotic therapy to him and he dismisses it as an option. He even refuses to discuss it as a possibility.
I need some advice. I don't want to second guess my doctor but I do want to be involved in my therapy. Any help? Thank you!
Posts: 6 | From Myrtle Beach, SC | Registered: Apr 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
The best thing you can do is to go to Find a Doctor on this board and see an LLMD.
There is another website called The Road Back, that treats people who are diagnosed with RA. You can check that out.
I believe it's www.roadback.org. They believe in treating RA with minocycline.
posted
Thanks Kelmo. I found the website and will read all about it. I will also find an LLMD.
I guess my actual question is does anyone think that this can be lyme rearing its ugly head again? That's what I'll ask the LLMD when I find one.
Thank you for pointing me in the right direction. I had no idea where to start. It's most appreciated. LMH
Posts: 6 | From Myrtle Beach, SC | Registered: Apr 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
LMH, hang around for a while, read, and ask questions. Someone who knows something specific to your problem will likely come along to help.
Here is a book with more info: The New Arthritis Breakthrough: The Only Medical Therapy Clinically Proven to Produce Long-term Improvement and Remission of RA, Lupus, Juvenile RS, Fibromyalgia, ... & Other Inflammatory Forms of Arthritis http://www.amazon.com/exec/obidos/tg/detail/-/0871318431/
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I am not a doctor, but the story you tell sounds like you have late or chronic lyme, many of us here have been down the same road.
Lyme tests can be negitive and still have lyme
How? Our bodies produce antibodies when fighting infections (lyme is a bacterila infection), if our immune system is supressed or weak
it will cease producing antibodys that fight the infection, and the western blot test among others are looking for the antibodys, and if they arnt there they cant find them.
Many that have had negitive tests after going on long term treatment later when retesting have very strong positive results
As the treatment has help the body to begin figthing the infetion again, and the body produces antibodies again.
How long were you on abx? 2 to 6 weeks is not enough, if caugth with in a few weeks of infection LLMD's treat for 8 to 12 weeks
for folks who been ill long term 3 month to many years often 12 to 36 months of treatment are needed
this is because the Bb bacteria has had time to spread thru out the body and reproduce (go thru the cyst form)
Seeing an LLMD ( A Lyme Specialist) is imperitive as they are the only Docs who know how to deal effectivly in treating lyme.Some are treating with non abx with a lot of sucsess.
When on abx many use lots of probotics to re populate health intestinal flora.
Hope this helps Later Bruce, I have lots of key info links on lyme at me home page feel free to check it out bcclocks.com/lyme.html
-------------------- CFS for 20 Years then found LYME the root cause! Am dealing with several viruses also. Posts: 89 | From Alliance Ne | Registered: May 2006
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posted
Thanks for the reply and all the good info Bruce. I was diagnosed by my rheumatologist as having late stage Lyme disease. I had been sick for years and in many hospitals utilizing all my company's insurance money for any and every test in the book---except the one for Lyme.
My physicain is a good guy and I still travel from SC to Pa to see him. However, we disagree on a few things. I have never been treated longer than a month at a time, been treated about three times and when I asked if I could go on oral antibiotics for awhile he told me it wasn't necesary. When I told him I still felt as I did when I was active with Lyme he told me I have CFS, fibromyalgia and other disorders. I have always thought it was Lyme.
Now I have presented with rheumatoid arthritis. It is my belief that if he gives me antibiotic therapy for the RA perhaps the Lyme issue can be addressed at the same time...cause I am thinking it's the same issue. He won't entertain the idea. No, I am also not a doctor, not even close, but the one thing that I know more than any doctor is my body and how it feels and I feel like the worst of the posters on here, the ones who say they don't know how they are going to make it through this. It's exactly how I feel, I try to be upbeat, use humor, enjoy life and laugh but, in reality, I still think, "What's the use?" No one listens.
My big problem is that while I feel that my health care is a partnership between me and my doctor and that I should take an active part in it my husband doesn't agree. He thinks I should blindly take any medication given, never question anything and just go along with the program. His opinion is that I am micromanaging my care. My opinion is that it's my body, my life and I must be an advocate for myself. I have no other.
BUT...after finding this site I can see that there are others in the same boat as I and who feel the same too. It helps to know that.
I'm sorry for such a long post. Guess I appreciate the fact that someone's listening for a change. Thanks again, Lorraine
Posts: 6 | From Myrtle Beach, SC | Registered: Apr 2007
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posted
LMH With regaurd to blindly accepting what our Doctors say, we need to remeber a doctor refurs to his clients as hnis practice, and thats what medicine is on the job training,
the longer they been doctors (hopefully)the better they get, and Lyme spcecialists are on the cutting edge of dealing with lyme many have been treating it for 20 plus years, or are closely working with those who have.
It sounds like its time to see a LLMD (lyme Doc) as they know what works and they listen to you as you tell them what your body is saying.
You wont make any progress till you do, and even then it will take time, there will be ups and downs, every one progresses at a different rate, some noticble better in a few months others take a year or more.
I been ill over 20 years CFS, irritable bowl, fibro, eppstine bar, west nile, just found out lyme is the root cause, along with the viruses i have,
Lyme has hit me very hard cause of the viruses, and a very weak immune system, I been on treatment a little over a year now, started on abx, recently switched to Samento (cats claw) and Burbur (detox)
I have some great info on my site (with a few docs)at bcclocks.com just click on the lyme link.
Do try to find a LLMD , Take Care Bruce
-------------------- CFS for 20 Years then found LYME the root cause! Am dealing with several viruses also. Posts: 89 | From Alliance Ne | Registered: May 2006
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