Discussions By Condition: I cannot get a diagnosis.

3 years of baffling and debilitating symptoms

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: tpno2005
  • June 9, 2009
  • 01:25 PM

Hi,

I have been sick for almost 3 years now. It started out as feeling like I was being sedated, so I thought I might have been overmedicated. I got off all my meds (Ativan, Paxil) but the feeling of sedation continued, along with increasing fatigue and muscle aches. About 6 months into it, I began to have muscle twitches, and also was having memory problems. The sedation was strong enough that I was sleeping a lot more than usual and never feeling quite rested.

By the end of the first year of this illness, the fatigue had become so great that I could not work or go to school. I also was feeling very delirious so it was a challenge even to organize my thoughts enough to go see the doctor. They ran blood tests and found that my thyroid was low; I was put on medicine and the levels (TSH, T3, and T4) returned to the normal range but my symptoms did not improve. They actually continued to get worse. I had several more tests done but they all came back normal. The other tests I had done were:

B-12 level
Echocardiogram and EKG
Basic Blood Panel, Electrolytes, Liver Function, Kidney Function, CBC
CT Scan of my head and spine
Basic neurological examination (reflex tests, etc.)
Cortisol, Testosterone Levels
Basic Urinalysis
Thyroid Ultrasound, Antinuclear Antibodies Test (which did come back positive for antinuclear antibodies)
HIV Test – Negative
Chest x-ray
Blood sugar spot tests – normal

About 18 months into the illness, I was feeling so sedated that I was sleeping about 22 hours a day. I would wake up to eat and watch some TV and then fall asleep immediately. I almost felt like I was falling into a coma. It was a very miserable experience. Around this time I read about chronic fatigue syndrome and a possible (not documented scientifically, unfortunately) connection to a Candida fungal infection. I decided to try some antimicrobial products to see if I would get any improvement. (Note: This was after trying multivitamins, B-complex vitamins, ginseng, B-12, Vit. C etc. with no effect). After taking my first dose of grapefruit seed extract I woke up immediately and felt a surge of energy. The next product I tried was Acidophilus (to restore the balance of intestinal microflora). I was awake and alert going into it, but when I took it, I immediately felt a heavy rush of sedation like I head felt in the past and fell right to sleep for several hours. After a few days the sedation wore off and I was awake again, so I took the next dose of the Acidophilus and had the same reaction, only milder. Eventually I was able to take the Acidophilus everyday without problems. At this point my energy and mental concentration were enormously improved. The muscle twitches and weakness had also completely ceased.

I was still having some residual fatigue, and now I was trying to treat my ailment under the assumption that it was a Candida infection. I know that there is no scientific support to the idea of intestinal Candidiasis in immunocompetent individuals, but I had nothing else to go on. The next product I tried was Caprylic Acid, which was touted as a strong anti-fungal. The first time I took the caprylic acid I had that same feeling of heavy sedation, but the second time I had a very severe reaction where it became difficult to breathe and very hard to sleep. I know this was not an allergic reaction because I didn’t break out in hives or anything and it actually felt like my breathing was being depressed. I had had breathing problems prior to taking any antimicrobial products, as part of my illness, and this was the same sensation, only much stronger. After several weeks the breathing discomfort eased, and I tried taking another caprylic acid pill. Unfortunately I had the same reaction, and was never able to quite get rid of it afterwards for several months.

I was also following the suggestion of eliminating all simple sugars from my diet, and did this for several months. I read on the web of the supposed “die-off” effect from treating Candida, so I thought maybe I was just going through this. After several months of continued breathing discomfort and trouble sleeping, I finally became fed-up and tried any way I could to ease the symptoms. I added a small amount of simple sugars back into my diet and the symptoms eased up quite a bit, to where I was back to having a good amount of energy and had no breathing discomforts. After a few months of feeling great like this, I began to have cravings for vinegar to the point that I was consuming salad dressing with every meal. I noticed that my symptoms started to come back, but (mistakenly?) thought it was due to the added sugars in my diet. I eliminated all added sugars in a much more drastic way this time (counting added sugars in canned foods, etc) and the breathing difficulty, etc. got WAY worse. Since then, I have not been able to resolve the issue of the breathing difficulty, even though I have re-introduced added sugars into my diet. My breathing gets very uncomfortable and slow at times to the point that I have gone to the ER several times, afraid that I would stop breathing. They have checked my oxygen saturation levels which have always been normal, so I've been forced to just "deal with it" which has been a living ***l.


I know it would be convenient to see I am a paranoid hypochondriac and that the breathing difficulty is due to anxiety and the fatigue is due to depression, but I can say with great confidence that this is not so. I suffered from depression and anxiety before the onset of this illness, so I know what they feel like. I had actually fully recovered from a long bout of depression and was feeling great before I got sick with this.

I feel very frustrated with the Candida issue, because it explains most of my symptoms and yet is not acknowledged by the medical community as a real illness. I’m also frustrated because even among professed Candida sufferers, I haven’t been able to find any accounts of people who had such severe reactions to both Acidophilus and Caprylic Acid. And as I mentioned, I know they were not allergic reactions!

I would appreciate any feedback regarding potential diagnoses and / or tests for me to pursue. My symptoms have been so bizarre that I know the real answer must be a very strange one indeed. Sometimes I feel like I am on LSD, my body feels contorted and/ or enlarged, etc. I have also been screened for schizophrenia and no I do not have it! I know from my psychology background that I do not have the typical presentation of schiz. at all, so don’t try to throw that one at me either =) .


I promise I am not crazy!


Thanks for reading my long and confusing story,
Thomas


Note:


Have yet to be tested for -

Lupus, Lyme disease, MS (although I assume it would show up in the CT scan of my head?), EBV, STDs

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  • This is going to sound strange but what is the appearance of your tongue?Does it have a white or yellow coating?Any small red spots?Any parts peeling or cracked?Is it pale,red,purplish or other?Anything else?Have you been checked for autoimmune diseases?What other tests if any were abnormal apart from thyroid function?I'm guessing they didn't give you an arterial blood gas test and only used the pulse oximeter-would that be correct? Requoted from wikipedia:Oximetry is not a complete measure of respiratory sufficiency. A patient suffering from hypoventilation (poor gas exchange in the lungs) given 100% oxygen can have excellent blood oxygen levels while still suffering from respiratory acidosis due to excessive carbon dioxide.It is also not a complete measure of circulatory sufficiency. If there is insufficient bloodflow or insufficient hemoglobin in the blood (anemia), tissues can suffer hypoxia despite high oxygen saturation in the blood that does arrive.
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