I have all kinds of wacky symptoms and no definate diagnosis. I had a positive Lyme Antibody test and that's it.
How do I get a diagnosis??? They have ruled out everything else. I don't know what else it could be. My Infectious Disease Doc thinks it might be Neuro-borreliossis???? But says it's difficult to prove.
He wants to do a Lumbar Puncture! Is this necessary?
I'm military, so I'm stuck with whatever docter they give me.
Any advice???
Posted by sixgoofykids (Member # 11141) on :
You need to pay out of pocket and see an LLMD. If you had a positive test and have the symptoms, you most likely have it.
You will NOT get treated long enough by any doctor you are sent to. It has to be an LLMD.
Your health is worth whatever you end up paying. You can't put a price on getting better (but the LLMD can, LOL).
BTW, the ID docs are the WORST there are in dealing with Lyme Disease, kind of ironic, huh?
Posted by Kevin Hamblin (Member # 12019) on :
Thanks for the reply.
How do I find an LLMD?
There is a CFS/Fybromyalgia specialist in Ft Worth and they believe CFS and the like are all caused my micro-organisms. Lyme is one of the most common diseases they deal with (they said).
I went to a free seminar before the positive lyme tantibody test and then I said HMMM!!!
They charge $400 a visit, but run very thorough tests and give vitamins and antibiotics via IV. They are honest and don't claim miracles but most people (80%) feel better within 6-8 mths. 90% are significantly better within a year.
I've already suffered over a year and am willing to pay anything, but I'm afraid it may interfere with my military medical retirement??? But who cares if I'm madce well.
I have 17 yrs of service and am a Master Seargent. I have a Bachelors degree and can do anything when I'm healthy. I was an extremely good athlete and in good shape. Now I can barely do anything. Brain Fog is the worst symptom. Headaches and all the other wacky symptoms I read about.
Oh yeah, my testosterone was low too. The CFS people said that was common, but none of the other Docs have a clue why.
Thanks for listenting. Sympathy is hard to come by.
Kevin
Posted by sixgoofykids (Member # 11141) on :
Yeah, it is, that's why all of us come here, for sympathy and support. It's very difficult when you have a disease that makes you sound like a hypochondriac!
I probably have had this for 35 years and am responding well to treatment. I don't know where there's an LLMD near you, but you can post in the seeking doctors section and someone will PM you with the closest doctors.
I fly to NY to see my doctor, and it's worth every penny. Fortunately, my meds are covered by insurance. I don't know anything about military medical retirement ...
I have all that, too -- CFS, brain fog, etc. And I've gone from being very active to doing hardly anything, too. If you can, try to get what little exercise you can handle ... it helps. I lift weights four times per week ... sometimes my husband has to drag me there.
Good luck with it all. Keep reading! There's a good website you might like -- www.ilads.org. Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Kevin Hamblin: I had a positive Lyme Antibody test and that's it. That's enough!!
How do I get a diagnosis???
Find an LLMD. We can help with that. TX doesn't have very many options though.
My Infectious Disease Doc thinks it might be Neuro-borreliossis???? Neuro borreliosis is "neurolyme"....YOur positive test says you have it.
He wants to do a Lumbar Puncture! Is this necessary? NO, NO, and NO! Spinal taps are at best 20% accurate in finding lyme in the CSF. A waste of time and money....and sometimes result in BAD side effects that are LONG lasting. [/QB]
W E L C O M E ! ! ! ! ! !*)!*)!*)!*)!*)*!)!
Posted by GenaD (Member # 11988) on :
Welcome Kevin!
Sorry you have to be here, but glad you found Lymenet.
I was just diagnosed with Lyme,Babesia and Bartonella recently (though I've had symptoms for years) and I even more recently found Lymenet. It has been so awesome to find people who can relate! My family and friends are supportive, but only others suffering can truly understand.
I'm learning just how many of us loved to be active before...which I guess is a no-brainer, considering most of us were outside and active enough to get bitten by a tick..
But it's so ironic and seems so unfair how many of us love sports and being healthy, and end up sick and unable to do much of anything.
I was in fitness competition shape for a few years, until I was finding it so hard to build muscle--harder than it should have been because I was working hard in the gym and doing everything right. I was just so tired and my brain was foggy.
Then all the other symptoms started coming, little by little.
It took some time for me to accept that a day I can work out is a good day. Like Six, many days I have to drag myself to the gym, and it used to be I didn't want to work out if I couldn't get a great work out in.
Now my work outs are mediocre at best, but Six is really right--you feel better when you can be as active as possible--even if that is doing only a little bit.
This disease steals so much and it just sucks. There's really no other way to put it!
But...people here are so understanding and many people are getting better...So there's always hope!!
Gena
Posted by Geneal (Member # 10375) on :
Dear Kevin,
Welcome. I agree with all of the others on the "welcoming committee".
You need to find a doctor who is knowledgeable about Lyme disease and co-infections.
Do you know about how long you've had these symptoms?
Do you recall a tick bite and a rash?
I wish I did....Sure would have made pinning this horribly, strange disease down.
Hope you can find a good Lyme Literate Medical Doctor soon, and get on the road to recovery.
Hugs,
Geneal
Posted by Cassie (Member # 2106) on :
Welcome Kevin,
I agree with everyone else you need to find a lyme doc asap. So sorry you are so sick. You have come to the right place for support.
Take care your new friend Cassie Posted by Kevin Hamblin (Member # 12019) on :
Thanks for all your support. I do remember several tick bites. I'm in the military and have been bitten by every bug in every continent just about.
I specifically remember a deer tick attached to my leg for over a month in 1996 in Panama City Florida.
I thought it was a mole/skin tag? It was in a difficult place to see and I didn't pay much attention. And then a month later I noticed it was huge and I freaked out. I grabbed a magnifying glass and contorted my body to look at it and I SAW LEGGS!!! I knew immediately it was a tick and I ripped it out but couldn't get the head. It got a little infected because I dug at it, but I don't know if that's "THE RASH"???
Anyway, I'm looking for an LLMD that will hopefully take my Tricare (military insurance).
Thanks again. Kevin
Posted by iceskater (Member # 8655) on :
Welcome aboard Kevin! You are in the right place for support. Many good links have been provided for you to find a lyme literate MD and to find the resources that you need. Better health is ahead!
Posted by Vermont_Lymie (Member # 9780) on :
Hi Kevin,
Sorry to hear about your tick bites and lyme -- you have gotten good advice here, and I just want to add:
I totally agree with others above:
Forget the spinal tap!! I had a spinal tap once for lyme, and could not walk or get up from a prone position for over two weeks!
(My doctor at the time that ordered the spinal tap said that was unusual, but I am not sure I believe that!)
Get an llmd as soon as you can! They will probably order a blood test from IGENEX.
The money for an llmd is worth it -- recovering your health is worth it!
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