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9 Year Long Illness with No Diagnosis - Please Help

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Old 11-21-2009, 05:37 PM   #1
Join Date: Nov 2009
Location: Bronx, NY
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drfriedman1976 HB User
9 Year Long Illness with No Diagnosis - Please Help

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’s family has a history of thyroid problems. Chronic Fatigue Syndrome was suggested but then dismissed as a possibility because my attacks do not last for months. An additional piece of information is that my bilirubin levels are always very high when my liver enzymes are tested.

About 2 years ago, I developed problems walking using my left leg. On April 23, 2008, I had knee surgery on my left knee. A premier NYC orthopedic surgeon performed the surgery and thought I had a torn meniscus and believed he saw the torn meniscus on the MRI of my knee. It turned out to be chondromalacial patella when he went in and did the arthroscopic surgery. A year before the surgery I saw a physiatrist because I could not flex my left calf and it was causing problems walking. She thought it was a torn meniscus and sent me for a MRI, which led me to the orthopedic surgeon.

I still have great trouble walking and it gets worse with each passing day and have always believed that these problems are connected to my mystery illness. The leg will not engage at times when I am walking and I often have a limp and/or the leg will drag behind me. I still cannot flex my left calf and I cannot pull my left foot up to my shin as far as I can with my right foot. At night, I get horrible, repeated cramps in my left calf and have tried taking potassium and drinking tonic water and it has not helped much and the Zanaflax my neurologist gave me to take at night does not always help. My left quadriceps and left glute will spasm and twitch uncontrollably when I stand or lie in certain positions. I fall frequently due to these problems and they are getting worse. My neurologist completed a series of MRIs of my brain and central nervous system, EMG testing, and a Visual Evoked Potential test. The results have been “atypical” (quoting the neurologist) for MS. Furthermore, he has found that the loss of strength and coordination is not limited to my left leg. The entire left side of my body is losing strength and coordination. The only thing he did find on the MRIs were two 2-3 millimeter long lesions on the right side of my brain in the area that controls motion on the left side of the body. That was all he was able to tell me about them and had a radiologist look at my films and said the lesions are, “unremarkable.”

In a visit to another neurologist, in August 2009, he suggested that this might be a post-viral syndrome resulting from the Epstein-Barr virus. I have repeatedly tested positive for Epstein-Barr. This doctor read of four cases, in Brain (journal), where patients have had post-viral syndromes from Epstein-Barr with symptoms similar to mine. He recommended I see an infectious disease specialist again, specifically to look into a post-viral syndrome, which is what has brought me to see you.

I have been suffering for too long and have become extremely upset with each passing day and passing doctor’s visit where I do not get any answers. I am scared and feel helpless. I look forward to hearing from anyone that can help and hope to be pointed in the right direction to a diagnosis and treatment.

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Old 11-21-2009, 06:19 PM   #2
Join Date: Nov 2009
Location: Kahana
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andreadoloffo HB User
Re: 9 Year Long Illness with No Diagnosis - Please Help

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.

Old 11-22-2009, 04:24 AM   #3
Join Date: Nov 2009
Location: Bronx, NY
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drfriedman1976 HB User
Re: 9 Year Long Illness with No Diagnosis - Please Help

Thank you. I will look into the ginger and carrot juice. I drink tons of water every day, so hopefully the other things will help.

Old 11-22-2009, 07:23 AM   #4
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jenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB User
Re: 9 Year Long Illness with No Diagnosis - Please Help

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.


PS: you could also visit the Chronic Fatigue and the Lyme boards here, if you haven't already

Last edited by moderator2; 11-22-2009 at 07:30 AM. Reason: please do not solicit private messaging, as per the posting policy

Old 11-26-2009, 09:54 AM   #5
Join Date: Oct 2008
Location: MA
Posts: 61
22dreams HB User
Re: 9 Year Long Illness with No Diagnosis - Please Help

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.

Last edited by 22dreams; 11-26-2009 at 04:17 PM. Reason: additional info of interest

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