Hi, everyone: I have a dilemma. I've had two negative Western blots (6 months apart) and am now waiting for my Igenex results to come in. I saw an LLMD last week who diagnosed with with Lyme encephalopathy (nausea, fatigue, dizziness, ear pain/fullness, intermittent depression and brain fog, etc. - all in my "head" so to speak, except the nausea). I have been ill for a year.
This week I went to a specialist in Boston (I'm naming no names!) at a Lyme clinic who said my symptoms and negative Western blots don't support a Lyme diagnosis.
However, I have been on antibiotics (doxy, tetra, and now Biaxin and Plaquenil) and am feeling better.
What's the general consensus? Could it be some other bacterial infection, not Bb? A co-infection? (I think I'm waiting on co-infection results, too).
Thanks for your input,
Katie
Posted by Pocono Lyme (Member # 5939) on :
Hi Katie,
I've had some joint issues, but 90% of my symptoms are/were "in my head" also. The dizziness, head and ear pressure, blurred vision, balance issues, severe cognitive dysfunction etc. etc. etc..
Have you found a LLMD? Unfortunately, the non LLMDs took the same class I did that informed us that lyme disease consisted of joint pain (knees), a bullseye rash and with or without treatment would be gone in about two weeks.
Glad you're feeling better.
Posted by mlkeen (Member # 1260) on :
Welcome Katie!
Absolutely, joint pain can be minimal or non-existent. Coginitive, memory and vision issues were my worst symptoms. I had major fatigue too with some joint pain.
I initially had pain in my fingers/hands and was denied treatment with positive bloodwork because I didn't have swollen knees. I knew nothing of the problems getting a good doctor at that time.
When I was finally treated correctly, the joint pain went quickly but the neuro symptoms have taken longer to resolve.
Mel
Posted by 5dana8 (Member # 7935) on :
Lyme can decide to settle anywhere in your body
Sometimes it hit the hearts and thinks "I like it here and think I will stay a while" and they end up with just heart problems. I have a friend in CT where he just has -for the time being- heart involvment.
Sometimes it can spread to just the joints and then people don't have bad neuro problems just joint pain.
Some unlucky people get lyme and it wants to "see the world" and it will venture to many ares in the body.
it's different with each person and depends on how well traveled it is.
And by the way Lyme is a clinical diagnosis- get thee to a real LLMD!
Take care dana
[ 23. March 2006, 12:44 PM: Message edited by: 5dana8 ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by triharder:
This week I went to a specialist in Boston (I'm naming no names!) at a Lyme clinic who said my symptoms and negative Western blots don't support a Lyme diagnosis.
[/QB]
I'm assuming this is some ID doc [we call most of them DUCKS, as in quack quack!]?? Either way, this dr doesn't know much about Lyme, obviously.
And I will also assume these negative WB's were from QUEST or LAB CORP??
Then none of the above is anything to set your hat on!!!!
PS....The answer to your question is YES!
Welcome to Lymenet~!! Posted by hopeful123 (Member # 3244) on :
welcome to lymenet!!
very little joint pain here. exhaustion and big neuro head stx.
as stated above, get an llmd.
if you get better on atx, then you gots the lyme bug.
good luck
Posted by dguy (Member # 8979) on :
I didn't have joint pain (primarily fingers) until I tried a particular antifungal med.
I suspect killing off competing fungi created another area for Lyme to colonize.
Posted by AZURE WISH (Member # 804) on :
Lyme is very political and many dr.s are not willing to treat it especially if you have had it for awhile.....
Some do not think chronic lyme exists or lyme does not exist in their state.
Lyme can present with and combo of symptoms....
You do not need to have joint pain to have lyme....
I didn't have all the symptoms I have now when I first got sick...
(I have had symptoms since sept 1987 but didnt get diagnosed or treated till 2000)
So please don't let some moron convince you that you don't have something
when a dr. who actually knows about lyme says you do
In my experience as a lyme patient, if you don't treat the lyme it just gets worse.
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