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» LymeNet Flash » Questions and Discussion » Medical Questions » Diagnosed in 2003

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Author Topic: Diagnosed in 2003
jennygump31
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How do you know if you are really cured or if things your having problems with could be Lyme related?

Doc of course say all test are clean so you fine.

So the what is making me hurts so much all the time. What makes get get angry one min then cry the next (doc says stress).

What makes a simple laugh make you feel like the top of your head is going to explode and feel like your going to pass out (doc says charlie horse musle spasm arthritis)

What makes me feel so darn tired all the time?
(doc says Sleep deprivation) Yes I don't get much sleep becasue most of the time I can't get comfortable always have leg fidgets or achs.

I am so confused.

Jenny

Posts: 73 | Registered: Jul 2003  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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You need to find a Lyme literate doctor (LLMD) .... the ones telling you these things don't know a thing about Lyme Disease.

Please go to seeking doctors and post to find an LLMD in your area.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
adamm
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Also check the Lyme Disease Association's online referral database.


Your doctor, like all except a handful, has been completely

mis-educated about tick-borne illnesses. You need to read

all you can stand to about the subject. The currently available

blood tests for the disease are absolute garbage.

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Michelle M
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quote:
Originally posted by jennygump31:

Doc of course say all test are clean so you fine.


Jenny -- your doc should be congratulated!!! Obviously he has made a new discovery!! Because so far, there is no test available that can prove that lyme has been completely eradicated.

What 'test' is he talking about? I'm betting an ELISA or some other essentially worthless test.

You need another doctor, fast.

From the sound of THIS doctor, I'd almost bet you were not treated long enough, or with sufficient antibiotics, and/or tested and treated for coinfections.

Do NOT let your doctor convince you these symptoms are in your mind. Or worse, attributable to the imaginary "post lyme syndrome" nonsense. Cure is determined clinically.

Please find an LLMD and work on REALLY getting better. This doc is for the birds.

Hugs,

Michelle

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
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Several of the things you mentioned set off red flags for BABESIOSIS for me. Have you been tested for Babesiosis and Ehrlichiosis? The tests suck but you never know-

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
jennygump31
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Sorry for the delay in response I have been in alot of pain my shoulders, neck and head have been killing me. They did an MRI and now say I have Mild tonsillia Ectopia (sp?). So are they now pulling it out of their you know what?

They want me to see a nero surgen now.

What next.

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valymemom
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Your new symptoms sound like babesiosis and the testing for this co-infection is as bad as for borrelia.

I would strongly suggest you see an llmd.......strongly.

Posts: 1240 | From Centreville,VA | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
Michelle M
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Here's a study which indicates that can be problematic even if "mild."

http://www.nfra.net/Chiari6.htm

However, while not ignoring that diagnosis, I'd be inclined to find an LLMD. It's possible (read that as "likely") that lyme/co-infections are the most prominent part of your symptoms. Your headaches could be caused by brain swelling (mild encephalopathy) due to infection.

I would decline any knife treatment until an LLMD consult and thorough testing and evaluation.

Good luck to you.

Michelle

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Michelle M
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More reading.

Suggests a structural cause.

However, I'd let an LLMD weigh in.

http://www.heffezneurosurgical.com/chiaripaperweb.jsp

Michelle

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
bettyg
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jenny, [group hug] [kiss]

i tried to read what michelle posted about this illness; couldn't begin to understand any of it.

post in SEEKING DR. area and show the largest city/state CLOSEST to you in SUBJECT LINE.
-------------------------------------------

in body, show 4-5 LARGEST cities with the CLOSEST to you so we can check for llmds AROUND YOUR AREA! THANKS! [Wink]

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kam
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You are most likely going to need to step out of the insurance box.

Just to give you an idea...


I was working full time one week and not able to get up and take a shower or do household chores and felt like I Needed a wheel chair to get to work the next week.

Went to over 35 specialist and through 3 different insurance plans.

WEnt to one doc out of the insurance box.

he knew enough to test me for lyme with igenex labs and the symptoms for lyme.

Then contacted this web site and the Lyme Disease Assocaition to get a lyme specialist in my state

At the time there were only 3.

Learned later you can also contact Igenex lab to see which docs are using their tests.

Lyme is a clinical dx by a LLMD (Lyme Literate MD)

Also learned that some who say they are lyme literate are not.

Went to a primary doc who said he was from the east coast and very familar with lyme.k

When I gave him my igenex test results he did not know how to read them.

he also said he wanted to make sure my lyme doc was not giving me more than the couple of weeks of antibiotics.

We have a big obstacle in the medical field. I think it would help if testing was more accurate.

Testing for co infections is also problematic.

Again, symptoms are more reliable than testing.

Hope this helps.

Bottom line....Contact ILADS, LDA, post on this site for a LLMD..check with a lyme support group in your state...I think most are through yahoo groups.

I wasted a lot of precious time jumping through the hoops of the specialists.

At least I ruled out all of the other stuff.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
   

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