9 Year Long Illness with No Diagnosis - Please Help

K

kaitlyn lindsay

New member
I am writing to ask for help. I have been suffering with what I can only call a mystery illness since May 2001. I will go into more detail later on, but I have been to over 30 doctors, both internists and specialists, and no one has been able to figure out what is wrong and I continue to suffer.

During the summer of 2001, a month after returning from vacation for 9 days in Barcelona, I fell ill with what was diagnosed by my GP at the time as mononucleosis for about 8 weeks. He claimed it was "a severe and unusual strain" that caused severe muscle and joint pain all over my body, hypersensitive skin that was sore and hurt to be touched, low grade fever, sore throat, post nasal drip, and fatigue. After the mono appeared to have gone away, I would get monthly attacks with the same symptoms that would last anywhere from 3 days to 3 weeks. These have continued to this day. No medications ease the symptoms and I just have to wait for them to go away.

After having this long enough, I have stopped drinking alcohol because I have found this is one trigger. Another trigger is going too long without food and another is high stress. I go with fewer attacks now, but still have them. At times, I get attacks without any identifiable trigger. I have seen many internists for this, as well as an allergist, an immunologist, rheumatologists, a hematologist, three infectious disease specialists, and three neurologists, to name a few. The hematologist tested me for porphyria and it came back negative. I have been tested for HIV/AIDS, rheumatic fever, STDs, Lyme Disease, Brucellosis, and Multiple Sclerosis, to name a few. All tests have come back negative, most repeatedly, as I have seen so many doctors about this problem. I have been rushed to the hospital several times when I have an attack because I have been in so much pain I could not get myself off of the couch/bed to get myself to the bathroom. My uncle has fibromyalgia and my mother
 
I suggest ginger, moderate doses every day to see if it causes any changes on your symptoms. After, that increase in moderation. Also, have a glass of carrot juice with an intake dose of gree grass every week, until the dissipation of the symptoms are noticeable. Stay away from any synthetic medication, if you can. Lastly, drink plenty of water to flush-out impurities from your blood stream system.
 
I still wouldn't rule out CFS/Lyme disease - one, both or a combination. Most labs do not know how to test for LD. The blood has to be sent to Igenex in Palo Alto CA.

All the best with finding some answers.

Jen

PS: you could also visit the Chronic Fatigue and the Lyme boards here, if you haven't already
 
I'm with Jen on this.

The conventional tests for lyme disease only have a 46-56% sensitivity and cannot be used to rule lyme out ( a negative test does not mean that you do not have it).

It's like flipping a coin.
To be considered as a diagnostic tools, test sensitivity must be 95% or better.
(to give you an idea, conventional HIV testing sensitivity is 99.5%). Sadly, even the better labs run into the 70%s.

I suggest you pay a visit to the lyme board and ask for the name of a LLMD nearest to you. S/he'd be able to rule lyme in or out. There are other tick-borne diseases that can contribute to the symptoms you describe.

When TBIs are introduced, they can challenge your immune system to the point where we are more susceptible to viruses or previously dormant viruses rear their ugly heads. So Chronic Fatigue Syndrome etc could easily be part of the picture.

Chronic inflammatory polyneuropathy (CIDP) is a syndrome seen in some with untreated (advanced) cases of neurological lyme disease. look up CIDP and see if it sounds like you.

In this case, the underlying infection (lyme) is treated while attempts to alleviate the symptoms of lyme's CIDP can be utilized. CIDP's first line of defense is normally steroids to reduce the inflammation because it's cheaper for insurance companies--which is a NO-NO when Lyme disease is the causative agent.

Some success has been found with Intravenous immune globulin (IVIG) administration in some lyme patients.
I personally know someone with neurological lyme who couldn't get herself out of bed, never mind walk to the end of her driveway; and after 1 treatment could walk to the end of her block and back.

Good luck. and hang in there.
 
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