posted
Over the past several months I have been on a roller coaster of varying symptoms and unexplained issues with my health... Anyway in October I was diagnosed as having Mitral Valve Prolapse after never being aware I had this condition, have an enlarged but clear thyroid, dizziness,diffuse joint and bone pain,IBS, lower than normal body temperature yet I am flushed in the face, etc. etc. I could probably provide you a list of about 20 more things but there are just too many to list... Is it possible to be infected with Lyme and associated co-infections with testing negative on Lyme Elisa and not having any positive bands on the WB? I was tested through Quest Labs after my duck talked me out of Igenex testing stating it was too expensive and not covered by insurance...
Posts: 4 | From NJ | Registered: Jan 2008
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Yes, symptoms in several categories (heart, digestive system, joints, dizziness), crashing pretty quickly and unexplainably ("roller coaster"), living in an endemic area (NJ), sounds similar to the stories of many who have been diagnosed with Lyme disease.
It is also not unusual to have a negative test. Sometimes the disease suppresses or thwarts the immune response.
Sorry to hear you are not doing well, and hope you can see a Lyme expert who can do a more thorough evaluation.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Thanks Shaz for your response I do have an appt. to see a Lyme Specialist in the coming weeks and just hope they can at least put a label on what I am going through and ultimately get treated... Obviously everyone in my family thinks it is all in my head because that is what my Doctor thinks... Easy for them to say since they don't know what it is like being in my skin everyday. I think the possibility of having it is fairly good since I have spent a ton of time in the woods and had to dig ticks out of my skin in past years.
Posts: 4 | From NJ | Registered: Jan 2008
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Peacesoul
Unregistered
posted
Lbean30......get used to it, you're going to always hear it's in your head. Ignore it and go with your gut. The majority of dr's are clueless on lyme and when they can't figure out why you're sick, they say it's all in your head.
It's a possibility you have lyme. I have the exact same symptoms as you
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adamm
Unregistered
posted
An LLMD'll be able to help you figure it out. You should post your
location in seeking a doctor, and check out the online doc. listing
maintained by the Lyme Disease Association.
Any exposure to ticks?
And yes, the VAST majority of Lyme patients will have negative
ELISA's. The Western Blot, although significantly more accurate,
produces quite a few false negatives as well, unfortunately.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I had red facial rash (malar rash), IBS, thyroid problems, Mitral Valve Prolapse- AND my kid also has MVP- developed it when sick, didn't have it before- bone pain- joint pain- and many many more symptoms-
I had Lyme, Babs, HME Ehrlichiosis. The thyroid stuff for me and the MVP for my daughter were both Babesiosis not Lyme-
BONE pain is often Ehrlichiosis.
Have you been tested for Babesiosis & Ehrlichiosis??? If not, you should be! If your doctor hasn't tested you for those yet, they don't have a CLUE about TBDs.
WELCOME*)!*! !*)*!)!*)!*)!
Yes, Lyme and Ehrlichiosis and Babs can all be blood negative. The tests suck- and these microbes love to sequester in tissue- Best wishes, Sarah
-------------------- 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
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posted
Thanks all for your responses I really appreciate it, I feel a whole lot better about my decision to see a LLMD, instead of just believing I am certifiable nutcase...
Posts: 4 | From NJ | Registered: Jan 2008
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jamescase20
Unregistered
posted
I have bart 1 (bartonellosis (carrins disease) god bless that poor doctor in 1905 infecting himself and documenting it. My body temp got down to 95.9!!!! Nearly comatose! 95 is considered near death..Get this response. I took swansonvitamins logifital 14 pills a day and within 2 weeks my temp jumped to 98.2!!! swansonvitamins.com I am not trying to promt swans. but man that was amazing
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Quest labs are not known for their sensitivity or accuracy in testing
For tick-borne diseases.
I feel "blessed" as I searched for what was wrong with me
To have one band come back positive via Quest labs (IgM 23).
I did not know of this site or Igenex labs until after I had been diagnosed.
BTW, it was the only blood test that came back "positive" for anything,
Given that I had probably had over 200 different virus'/diseases' tested for.
If possible, spend the money on an Igenex test.
If you had to put a price on your health, $190.00 is just a drop in a bucket.
With a positive history of tick bites and your symptoms,
I am glad you have found a "lyme specialist".
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I personally have never gotten a positive out of quest labs///
I do belive the tests there lack the correct modality and reagents to do an accurate test for Bb or co-infections.....
So Jamescase....exactly what did you take for your infection? I did'nt read how you got rid of that?
zman
[ 14. January 2008, 09:10 AM: Message edited by: lymie tony z ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Geneal thanks for the warm welcome for throwing me some hugs... Anyway, I have also been having bouts of tachycardia which I am on a low dose beta blocker for but sometimes I get bradycardia as well where my beats go down into the 45-55 per minute range... Has anyone else has a similar experience? My duck wants me to see an Electro physiologist just as a precaution..
Posts: 4 | From NJ | Registered: Jan 2008
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Sideways to James, James, bartonella is funny re temperature, some people it goes high, some low, I don't know what strain I had but I had a low grade fever for four YEARS until Cipro and then within 2 days- no fever!!! First time in four years it was GONE! Bless Cipro!*)*!)!
-------------------- 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
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