posted
Hi! So ok here's my story....I tested positive for lyme disease in the fall of 07. It was a fluke test the nurse practioner did because I went in with neck pain and no injuries.
They started me on a cycle of doxy for 4 weeks. Then nothing really happened. I felt ok. Then all of sudden about a month ago, I couldn't move! My entire body hurt!! It was really scary.
I went back to the doctor and they put me on doxy again for two weeks. Then I got a little better. They also referred me to a arthritis specialist?
He said my lyme titers had gone down??? No idea what that means. He also said I had a vitamin D deficiancy??
It still doesn't explain why I couldn't move for almost a week! Now my family doesn't believe I have lyme. They don't understand the constant pain I am in and none of my docs seem to know what they are talking about.
I have no idea how long I have had this disease. I have worked bathing and training dogs for 5 years. I could have gotten it at any time. I dont specifically remember the bulls eye, but it could have just been in an unusal spot.
So anyway, that is my story so far...I posted a topic hoping to get some referralss to a doc that know what he/she's doing!
Posts: 9 | From MA | Registered: Jul 2008
| IP: Logged |
tailz
Unregistered
posted
I got my Lyme from fleas and mosquitos and never had that classic bull's eye, though I did have some strange rashes (diagnosed as eczema the first several times, and then psoriasis).
You probably still have Lyme, but many of us also have coinfections - bartonella, babesia, mycoplasma, ehrlichia are a few common ones. If you don't hit the coinfections, you never get rid of Lyme.
IGeneX and Fry labs are supposed to be two of the better labs - there are others, too.
Don't waste your time though with a rheumatologist or an ID doctor. They wouldn't recognize a case of Lyme if you walked in on 8 legs with a pair of antlers.
Post in 'seeking a doctor' that you need to find an LLMD.
IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, So you are trying to find an LLMD (lyme literate MD?) I hope.
Were you tested through Igenex or just your primary Md's mainstream lab?
When you see an LLMD you will likely be tested for co-infections (other bacteria ticks carry) as these infections will need treatment with the LD. If co-infections are not treated it is unlikely you will get well and likely why you "relapsed". Here is a list of co-infections: http://www.lymeinfo.net/coinfectionarticle.html
Usually, anyone that goes 4 months or longer with Lyme symptoms is considered chronic. So basically you will need ongoing antibiotic treatment until you are symptom free + 2 additional months beyond that.
Titers dropping don't mean anything, Lyme is based on symptoms. Your test could go negative and as long as you have symptoms you are infected and need treatment.
Inadequate antibiotic treatment can worsening symptoms in a person with relatively mild or moderate symptoms, and make that person very sick.
Lyme Disease often persists and survives short term antibiotic therapy, but the short term antibiotics often lower the titers significantly, but then they slow begin to rise again over time.
The tests themselves are inadequate, missing around 50% of cases on average based on the studies in combination.
You still have the infection, and thus need more treatment. However an investigation into co-infections should occur immediately. The top candidates varry from location to location, but it's safe to always start was Babesia, Bartonella, Erlichia, an Mycoplasma (Erlichia will die relatively easily with long term cyclines -- doxy, tetra. Usually a couple months worth, sometimes less, sometimes more.)
Have you seen Under Our Skin? Write me, we'll talk.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic