I am looking for a doctor in Connecticut that is knowledgeable about Lyme disease.
I have been dealing with disabling chronic inflammation in both of my wrists since July 2008.
The cause was originally assumed to be a result of excessive overuse from typing regularly on a laptop keyboard, spending 4-5 days a week in the gym, and being a musician for 20 years.
Early on, my X-rays and MRIs turned up no helpful information in making a more accurate diagnosis.
I have taken excessive amounts of non-prescription anti-inflammatories the entire time which have given me mild relief at best.
According to my blood work and doctors, I do not have rheumatoid arthritis.
After eight months, I resorted to surgery on both wrists to remove some of the inflamed tissue (wrist capsulectomy).
During surgery, it was discovered that I had severe wrist synovitis from chronic inflammation in the ulnar and dorsal sides of both wrists.
It has been four months since my first surgery and three since the second, and I have not gotten any relief.
Three different orthopedic hand specialists and a rheumatologist have all run out of ideas other than ``wait to see if it gets better''.
I have been out of work on disability since January.
I am now going to a pain management center to desperately treat the symptoms that nobody can explain the cause of.
Although I am now getting treatment from the pain clinic for the constant pain and the psychological strain of living with this condition, I am only 30 years old and do not consider this a long-term solution.
Now for the important piece of information...
I have lived in Connecticut all of my life and have always spent a lot of time outdoors.
Twelve years ago I had several of the classic symptoms of Lyme disease including the bulls eye rash (on my side just above my waist line), severe fatigue, body aches, etc.
At that time I had a friend that was recently diagnosed with Lyme disease and had been treated with antibiotics.
Like the foolish teenage boy that I was, I took the 10 days worth of antibiotics that my friend had leftover and offered to me and decided to forgo a doctor visit when the symptoms subsided.
I am now starting to think that may have been extremely foolish.
Since this possibility just recently occurred to me, I have yet to get a Lyme disease test and am reluctant to deal with any doctors that don't have a sufficient background with the disease.
I have spent more money on co-pays in the last year than I care to think about and would prefer not to waste my money/time with any more doctors that are going to treat me like I am exaggerating my symptoms because they don't know how to explain them.
With that, can anyone please suggest an LLMD in the Connecticut area that might be able to help me rule out whether or not Lyme is the problem?
Any help is much appreciated.
-Jeremy
Posts: 1 | From Southington, CT | Registered: Jun 2009
| IP: Logged |
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
sent a PM
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
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/