Discussions By Condition: Medical Stories

Two siblings, two seperate states and both too sick. . .

Posted In: Medical Stories 3 Replies
  • Posted By: Anonymous
  • February 5, 2007
  • 05:05 AM

Okay, my brother and I are 18 months apart and I am the older of both of us. We came down ill in September or really started not feeling well in September. Both of us were together in July and the only things that we can pinpoint that we did together without our children or spouses is go through the garage of old things from when we were kids and stuff our grandparent's handed down. Some stuff had been flooded but was dried out by a builder (there error building a house and I guess a faucet or water pipe broke and the whole house flooded and was rebuilt). They had to wait forever to rebuild to see if mold would grow and the house was rebuilt (that was not our house just the house some of the stuff came from). Secondly, we live in Az and there were a lot of mosquitos and the county sprayed the whole neighborhood I believe in early August to get rid of them all. Those are the only two things that may or may not have any connection to this. So, through numerous testing a diagnosis really has not been made. He was negative for West Nile I am not sure if I have been tested. I had a negative lumbar puncture but is sent out for more testing. Our bloodwork comes back essentially normal including Celiac, Thyroid and everything in the normal tests. My T3 free was 4.38 which was high but not high enough for concern. My blood pressure runs lower than his about 90/63 now and he is a little higher. Our symptoms include extreme fatigue, extreme weight loss, nausea, headaches, severe insomnia, nausea and I would tell you it feels like mono but there is something much more to this and our joints/muscles hurt and heart slowing and than will beat fast for no reason which leads to chest pain, I guess. My brother and I are opposite personalities and are both now out of work due to this. He got a diagnosis of chronic fatigue syndrome and both of our doctor's first thing was anti-depressant and a sleeping pill. My brother has never been really sick ever. Anyway, I tried the medications and it masked some of the symptoms like the extreme tiredness. I am now off the medications after a horrible decline with whatever this is that led to being admitted to the hospital and still no one knows. I get the impression that no one wants to look at the similarities really but we ended up in the hospital at the same time with the exact same symptoms and for the exact reasons. We are both not able to function and interact with our children or families and it is this awful feeling of being sick that I am not sure how to describe. There have been times we have both felt that we were going to die and I cannot tell you exactly what but it is all the symptoms combining at once. I am taking boost and melatonin. He is taking ensure, paxil and melatonin. Both have had essentially negative MRI's except for some T2 hypersensitivities and white spots which I am told are normal aging or explain migraines. I do get migraines from a car accident 2 years ago and am no longer taking any medication at this time to see what my baseline is right now. I have been to several specialists who offer a referral to another specialist and I guess what I am asking is if anyone knows where to go when you cannot get a diagnosis and have two people who were together who live in two seperate states to care enough to look at everything? Where do you find a doctor who can look at everything and take the time to care before both of us end up dead or non-functionable? My mom is taking care of me and my dad my brother. My brother was the top of his company and we are both not yet thirty. We go through the same cycle and keep getting sicker and there are good days and periods of good days but definately still not able to function on those good days. So, any doctor's, patients or anyone who knows where we can go to find someone to look beyond the normal would really be helpful because we are not finding it where we are looking. I do not know what else to add I just need to know where to find help and pretty quick because about a week ago I could not even get out of bed or walk and I had to crawl. I went from my bed to the bathroom and that was it and layed there for three or four days before I finally got some sleep. We both eat well (more than everyone else) and excercise, have done the healthy sleep habits and tried almost everything we can think of. I have had an endoscopy and colonoscopy both negative with negative biopsies. Negative abdominal CT with contrast, negative on anything from the dentist like tooth problems etc, ECG showed prolonged QT rhythms and no one seems to be concerned about that so I assume that is normal, normal ANA, blood count, my glucose at times low like 70 despite a lot of sugar because I eat as many calories as I can because I will take weight anyway I can right now and fasting glucose of 83. Endricrinology panel normal except the T3 free. I have had mono twice (once, about ten years ago and the second was about two years ago). In the hospital they prescribed me Lyrica but it was for sleep? I was too sick at that time to take any medications and for the first time eat. I was discharged from the hospital and about twenty minutes after leaving, in the car, I got really hot like dripping sweat, needed cold air for some reason blowing at my face, my body tingled all over, my heart slowed really slow, it was 50 beats when I left the hospital and was definatlely slower than that on the way home and I began throwing up. I could not speak to say take me back and I rode the rest of the way home with my head down towards the floor and I could not pick it up. That was the first time for that. I do not know, we do not know but please if anyone knows where to go to get someone to look at the whole picture please let me/us know? Our children need us and our families do too and at this point we need to go somewhere or see someone who cares enough to look at both of us. Even the smallest amount of information would be helpful.

Thanks-

shadow

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3 Replies:

  • Have you had a nasal swab to test for mold in your nose/sinuses? It would not hurt to have a culture & sensitivity, AFB (acid fast bacilli) and fungus cultures done. I would place my money on something in your boxes of stuff was contaminated with mold. They might not have cleaned it completely and you could have stirred up something.
    leisumar 1 Replies
    • February 8, 2007
    • 01:59 AM
    • 0
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  • Mold could be the problem, but so can Lyme disease. CFS, fibro, MS and much more has been tied to undx'd Lyme. They think now its the cause of Parkensons and Alzheimers too. You could have been bitten at any time and not had the traditional rash. New reports say misquitos can carry it too. The mri's with the white spots, were they of the brain? Brain Lesions are found in some Lyme patients. Lyme gets into everyplace, and sometimes not seen in the blood. The docs can use clinical signs{symptoms} for Dx too. Please get tested for Lyme disease. The Western Blot is the better test, the others have a lot of false negs. Check out this site, lots of info and helpful people. www.lymenet.org . Hope you find out and feel better soon.
    Anonymous 42789 Replies
    • February 8, 2007
    • 00:49 PM
    • 0
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  • I have not had any of those tests nor the lyme test and I will definately ask for the tests to be done. I did forget to mention that around the same time I got something on one fingernail it ate down to the skin, started at the bed of the nail and was somewhat circular. It would turn green, yellow and orange was painful and awfully disgusting to look at. It is almost grown out after six months but the nail does not look like the rest of my nails as it is bumpy, rough and kind of flaky I guess. I was told just to dip it in bleach and water and to scrape it. Well, if I scraped it, it would bleed and take away the healthy nail but it is healing I guess. I was bitten by a tick in 6th grade it was in my ear as I had been visiting family in Amish county. That is the only time I know I have been bitten by a tick. Also, I got bit a lot this summer by mosquitos and I have always gotten welts from mosquito bites since I was a kid. Thanks, so much for the suggestions I will definately request those tests. Does anyone know of doctor's who solely diagnose like dianosticians? I am not sure that they even exist but cannot hurt asking. . .
    Anonymous 42789 Replies
    • February 9, 2007
    • 05:10 AM
    • 0
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