posted
My Rheumatologist called me this morning with the results of the Western Blot (not through Igenex), and told me they were negative. I guess I should be happy, but I am sad because I thought we were coming close to a diagnosis. He said, "well, we did the fancy Lyme test, and that's not what you have".
I am going to call the hospital that I had the bloodwork drawn at and ask them for a copy of the results. They couldn't help me yesterday, but hopefully since I did talk to my doctor, they will release the report.
I guess now my only option is to order the Igenex test and wait to meet with my LLMD.
I just wish I was able to bring a positive result to the LLMD so that I could start treatment immediately.
Posts: 64 | From PA | Registered: Mar 2007
| IP: Logged |
posted
My doctor told me mine was negative, too. It was CDC positive. I'd get a copy of the test.
Let us know what happens with the LLMD! I had my doc do the IGeneX test so I could take it to the LLMD. I just had the test kit sent to my house and took it into her office.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I'm going to try and get a copy of the test tomorrow.
I was just reading the Mayo Clinic page on Lyme, which says that heart symptoms with Lyme are rare, and if they do happen, they last a few weeks at most.
My heart symptoms have been my worst, and they have lasted 4 months so far.
I'm so confused Posts: 64 | From PA | Registered: Mar 2007
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Robin, I have had heart symptoms (angina and palpitations) due to lyme for over one year. The Mayo clinic is wrong.
My heart symptoms are greatly improved in the last month, after 8 months of antibiotics.
As you can see described in detail on lymenet, for some reason, there is a disconnect between reality and what many in the medical establishment say publicly and privately to patients about lyme disease.
We can only guess what their motives are for ignoring all the scientific evidence and peer-reviewed studies, not to mention empirical data -- greed, career boosterism, corruption, lack of intelligence and laziness -- but it all boils down to our (patients) need to see llmds for treatment.
Because these blood tests are often inaccurate, for an llmd, a diagnosis is based on clincal evidence as well as relevant lab tests.
Good luck and feel better.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
posted
I have heart symptoms, too. The only way it lasts "a couple weeks" is if they think hundreds of weeks is still a "couple"!!
You'll feel more on track and less confused when you get to your LLMD. It was so good finally having a doctor admit I was sick and understand my illness.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Thanks so much to everyone who has reassured me, it truly does help. I feel like I am getting closer to a diagnosis and today kind of made me feel like I had taken a few steps back.
I would never wish them on anyone, but I am glad to know I'm not the only one with heart symptoms. Some websites make them seem so rare and that's obviously not the case. I believe people who have gone through it over a doctor any day! Posts: 64 | From PA | Registered: Mar 2007
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
the test for lyme are Very Poor and perty much Usless at this point-- (Very Old Test)
To many things can Twist the results--
False Negitives are VERY Common--
False positives are Very rare--
The reason for this takes awhile to explain and I type very slow --but you can do research and find out the reason for yourself--
Lyme and co infections Must be DX by symptoms Only-- Not test results-- use tests Only to -conferm DX -(Diagnosis)
ALL of My tests came back- IND-(Indertiminate) from Igenix--
I have Zero Doubt that I have Lyme and Babs--
I had a Very Positive - Symptoms List--
AND I had a perfect Bullseye bruse weeks before I got sick-- 20 yrs ago-
Now 3 yrs into treatment I am feeling Perty Good most of the time -- and am looking forward to getting on with the rest of my life and having some Fun --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Nimzovich76: Cave, how did you know you definitely had Lyme? and if so why did you take the test?
I'm pretty sure Cave is one of the precious few "lucky" enough to have a positive spinal tap (lyme in cerebrospinal fluid).
(In case she doesn't check back in on this thread!)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
In my 30's I had all sorts of heart issues. I wore the holter monitor for awhile ~ they said nothing was wrong. They did Echograms, said I was perfectly healthy ~ maybe a slight mitral valve prolapse.
I woke up in the middle of the night one night and my heart was racing so fast I went to the emergency room. They couldn't figure it out at all. It finally slowed down about the time I got on the table but it sure scared the begeebees out of me.
I had heart palpitations, skipped beats, irregular beats, you name it yet all doctors said my heart was healthy. They also said I was too young for heart problems.
Fast forward 20 years and I do have lyme and it was the cause of my heart issues. My heart is still healthy (maybe because I exercise?) and the irregularity is better since treatment but I know it was the lyme causing it.
I was put on better blockers and others meds to try to slow it down and make it more regular. This lasted for years, not just a few weeks.
I can't believe there is literature out there that says the heart is rarely affected from lyme. Well, actually, yes I can.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Nimzovich76: Cave was it a WB or ELISA? it just seems unusual (more likely improbable) to have the antibodies in the spinal fluid but not in your blood.
Improbable? I think not.
"Patients with neurological symptoms of Lyme disease may need to have a spinal tap in order to study ``the blood of the brain,'' the CSF (cerebral spinal fluid). These patients may have negative blood and urine tests and show positive results with CSF. The Western blot, LDA, and PCR can be performed on CSF."
(From ILADS website)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic