[medicalmystery]

Hello,
In August 2007 I came down with fevers (up to 102.3 but usually 100.1), severe headaches that started at the base of my skull and wrapped around my entire skull, followed by extreme fatigue, and sweats with severe cold feet. Went back and forth from my GP, to ID dr., to ENT, and back to GP. Ct of head showed "minimal white matter disease" in September.

By January, an additional symptom of "intent" tremors of my hands and muscle fatigue started. All Lyme tests came back neg. as did Hep., mono., HIV but pituitary was low as well as thyroid. So possible pituitary tumor was mentioned. I insisted on an MRI

In March I received the brain MRI Dx. was "extensive demyelination of the white matter and plaques suggestive of MS".

Off to the first Neuro. Many blood tests (Elevated C-Reactive protein, high ANA), angio of the CNS, and a lumbar puncture come back fine with the exception of a single Oglioconal band (sp?).

I was sent to a Neuro. Immuneologist. He finds that I have a Vit. D level of 7, and a B12 below norm. also, C-reactive and ANA are higher, as well as platelet count. I also now have high blood pressure and high cholesterol, which I have never had before, but no answers except possible MS

I see an MS specialist. More MRI's, bloodwork. Sends me to Rheumatologist Rheumy sends me back to neuro after some bloodwork. MS Neuro sends me for a VEP test and that comes back normal.

I am now waiting on another brain, cervical and spine MRI series. I continue to deteriorate with the fevers, fatique, and tremors The muscle fatigue is becoming a problem, as well as with exertion, I go "numb" from my feet ascending up to my face. This disappears in the same order after about 15min. Also I have had "occular migraines" from time to time, which is new.

MS specialist is confused, as is the Rheumy. I have no idea which way to turn.

Both are now to the point of a brain biopsy.....

Thanks for listening!
Cris
(42yr. old mom of a 10yr. old Autistic daughter and a 5 yr. old typical son)

[GuestOne]

Lyme tests are very unreliable because the disease supresses your immune system. The CDC says Lyme disease is a clinical diagnosis (the diagnosis is based upon your symptoms, not test results).

You may want to study Lyme disease. Many of your symptoms on the symptom list.
Contrary to popular belief it does occur throughout the USA.

If you have any doubt contact your state board of public health and ask for the epidemiology division. Ask them to send you ALL the Lyme case counts. When you get this information, look at the number of cases of Lyme disease in your county. If the number is two or greater, then your county is considered endemic by the CDC. See the CDC's case definition for Lyme disease, specifically the definition of an endemic county. It only takes two cases of Lyme in one county for the county to be considered endemic for this disease.

Contact your state support group for referral to a Lyme literate physician. You may want a thorough evaluation for this disease. Study the information on the Lyme Disease Association and the International Lyme and Associated Diseases Society websites (listed below). Especially read about the inadequacy of testing.


CDC Incidence Map of Lyme Disease in the USA...find your state
Lyme Disease Association
http://www.lymediseaseassociation.org/Maps/index.html#

CDC Incidence Map of Ixodes scapularis and I. pacificus, commonly known as the "Deer tick",
http://www.cdc.gov/ncidod/dvbid/images/tickmap_lg.gif

Symptoms of Lyme Disease medical references
http://www.lymeinfo.net/medical/LDSymptoms.pdf

Nerve Damage Due to Lyme Disease
http://thehumansideoflyme.net/index.php

Lymenet Medical Discussion Board
http://flash.lymenet.org/ubb/ultimatebb.php/forum/1/30/0

International Lyme and Associated Diseases Society
http://www.ilads.org/

Canadian Lyme Disease Association lots of good information
http://www.canlyme.com/

California Lyme Disease Association
http://www.lymedisease.org/


Lyme videos:

Under Our Skin by Andy Abrahams & Open Eye Pictures
http://www.apple.com/quicktime/guide/entertainment/

San Francisco Lyme Disease TV Talk Show
http://video.google.com/videoplay?docid=-7379547551496279899&q=lyme+disease&total=265&start=10&num=10&so=0&type=search&plindex=5

Excellent video on Lyme Controversy- ABC News in Virginia
http://cfc.wset.com/external.cfm?p=lyme&menu=news


184 Lyme symptoms
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=021063

Symptom list/discussion
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=043100

WebMD definition of Lyme disease http://arthritis.webmd.com/tc/lyme-disease-topic-overview

[stulchinsky]

Hello, this is a forum moderator responding. In addition to the contributions of others in this forum, you can find physician-developed and -monitored information on Lyme Disease symptoms here: http://www.podiatrychannel.com/lymedisease/index.shtml.

You can also read the stories of others dealing with Lyme Disease at this link: http://livingwith.podiatrychannel.com/lyme-disease/.

Best wishes to you all.

[GuestOne]

Thank you.

This is a good description.