I am seeking a doctor close to home to help me or at least consult with my current PCP about Lyme Disease.
After complaining of fatigue and joint pain, my PCP tested me for Lyme among other things. I had the ELISA test come back positive and then the Western Blot test returned a positive result (IgM was postive, IgG was negative).
My PCP treated me with Doxy 100mg twice a day for a month. I have stopped the meds recently and she tested my SED rate which came back with elevated levels.
She told me to call in a few days to relay any symptoms (whether improved or not) and I can honestly say the joint pain and fatigue are still present. She mentioned steroid treatment if my symptoms persist.
I live in a densely wooded area frequented by deer and I share a home with 3 dogs, so my risks are definitely high . . . BUT I can honestly say that I don't even remember getting bit by anything. I never had a rash or the tell-tale bulls-eye.
I am so afraid that I am entering into a vicious cycle of treatments that will eventually make me worse, and the Lyme and any co-infections will still be present.
I am at a loss and could just really use some reliable advice. I am not confident in my PCP's knowledge of the disease. Can ANYONE point me in the right direction?
[ 06-08-2009, 02:32 PM: Message edited by: DJC ]
Posted by bettyg (Member # 6147) on :
welcome dc!
check your profile above for my pm to you on mass llmds
sorry, i couldn't read your long paragraphs; we severe neuro patients need short ones and doublespacing between each one ok. please my guidelines below to break up your post at the top so we neuros can read and comprehend your post; and then assist you; thanks! hugs
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
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.
Posted by dmc (Member # 5102) on :
sent a pm w/a name
Posted by jtavares76 (Member # 19216) on :
PM sent...JT
Posted by jtavares76 (Member # 19216) on :
Also...do not take steriods if you have any question about having lyme.
I took several rounds and my LLMD thinks it has suppressed my immune system making it more difficult to fight the infection.
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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.