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CFS or something else?

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Chronic Fatigue Syndrome
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Posted 7/23/2006 5:11 PM (GMT -8)
I have been sick  for 10 months,for the first six months I had typical CFS symptoms like, headaches, sore throats, fatigue, dizziness, panic attacks, muscle aches.  After about six months I started to develope severe anxiety which I still have.  At the point I am at, I really am not all that tired anymore- if I work out I will feel run down.  I look perfectly healthy.  I don't have trouble getting up in the morning- I don't need naps during the day. The fatigue really isn't so bad and all of the other symptoms have been gone.  I do have muscle aches, mostly in my back, but my anxiety is so bad I am tense all of the time.  I really don't know if I have CFS or just bad anxiety/depression at this point. My symptoms are highly mental right now.  Most of the doctors I saw said that were not sure I had CFS because there was no virus in my system.  One infectious disease doc did say CFS.  Anyone have any advice?  I don't know if it is physical, mental or both.
Posted 7/23/2006 10:11 PM (GMT -8)
I was diagnoised with CFS two years ago but had it about 6 years now. I have anxiety at times, but defintely the fatigue is bone crushing at times. I have swollen Lymph nodes all the time...when I started out I had sore throats...I had fever when I started out as well but now I'm doing good to get over 97.6. My blood pressure is extremely low.....85-48 and the aches and pains from this can be anywhere from annoying to severe at times.

This all started when a bite(I think) that turned out to create many, many, many boil-like bites all over me....That lasted two years until I got pregnant and I haven't thankfully had one since but the illness still goes on.

I tested positive for EMV and CMV also but that was after being diagnosied so I don't know if I had it before that period of time.
Everything for me came on very gradually though........mild achniess, mild fatigue, mild mood changes and then got worse as the time goes on.

Hopefully you don't have it...I really wish you don't. It's terrible and not curable and in fact a lot of doctors don't believe in it still even though so much research has been done and proven to be a true debilating ilness.

If it's anxiety, then medicine should be able to help quite a bit for that. Zoloft works really well for me. That will be the ruling out factor......if the medicine totaly controls everything that was wrong then you have your answer...

Good luck!
Posted 7/24/2006 5:29 AM (GMT -8)

Ginger- Are you able to work? How debilatated are you?  What is emv and cmv?  What happened to me came on very suddenly. I was so dizzy and weak for six months I couldn't drive.  That is pretty good if you were able to have a baby through this! Do you lead a pretty normal life, do the symptoms wax and wane?  I would really like to try Zoloft but I am afraid of the weight gain and most meds make me more sick- I am very sensitive to them.  I am on Wellbutrin at a low dose, it did seem to be helping for a while. I have to take Xanax to sleep.  I really went mentally crazy- I was thinking really strange violent things, it has been horrible.  I always feel so tense and mentally detached. I am struggling everyday to keep going.  Like I said the fatigue is more manageable then the anxiety.  I don't know what is going on with me!

Posted 7/25/2006 2:29 PM (GMT -8)

Hi aquarias,

How did you Lyme tests come out?  I still think your symptoms could be Lyme especially with your scary thoughts---Lyme can do that.

Posted 7/25/2006 5:14 PM (GMT -8)
Thanks for asking KC.  The results of my two lyme tests were negative.  I have had about six Lyme tests now- all negative.  The doctor I am going to is known to diagnose Lyme a lot and other undiagnosed cases.  After talking to me he said right away you don't have Lymes disease. I am going there again tomorrow, looks like its a mystery illness.  All my bloodwork was good and I did a thyroid scan which was normal. The only good news is I am starting to feel a little better- its been ten months- I hope it is  coming to and end!!  Thanks for thinking of me though!!

Posted 8/1/2006 2:00 PM (GMT -8)
How could the doctor say right away no lyme? That's a little strange, especially since all of the symptoms you described are pretty classic lyme symptoms. Did you look into seeing an LLMD?
Posted 8/1/2006 2:38 PM (GMT -8)

I tested negative 6 times for Lymes disease, I think because I have no joint pain they don't think I have it.  How many times can I test negative and actually have it?

Posted 8/1/2006 3:51 PM (GMT -8)
You can consistently test negative and still have it. Do you know which kind of test was run and at what lab? Elisa tests are the least reliable (they are virtually useless to long-term lyme patients); western blot tests are more useful, but only IGeneX lab in CA (and maybe one other lab?) test for all the bands, including those that are specific to lyme. If you had a test done by a regular doctor who did not send the blood to IGeneX, chances are the results the doctor looked at (specific "bands" showing up) aren't even the ones that are specific to lyme. You can read more about lyme, testing, etc. at www.ilads.org (International Lyme and Associated Diseases Society).
Another reason many people test negative is that lyme suppresses your immune system; the longer you have had it, the fewer antibodies your body is able to produce to fight it off. The tests look for antibodies, so it's no wonder that there are so many false negatives! You'd think the medical community would begin to address this, but no...
Anyway, that's just some more lyme info. I do think it would be worth looking into (i.e. seeing an LLMD, reading some more on I-LADS' website), but it's up to you. I hope you find some answers soon!
Posted 8/5/2006 11:29 PM (GMT -8)

aquarias,

I had no joint pain at all from Lyme until I started taking the antibiotics for it, and all of my other symptoms could easily be misdiagnosed as CFS.  I am clearly improving after being on the antibiotics for Lyme for just 4 months.

If you don't make very, very, very sure you don't have it, you may be suffering unnecessarily.

Posted 8/6/2006 11:53 PM (GMT -8)
ok i tested positive for the monospot may 1st ever since been real tired no more sore throat wasn't to sore to begin with but i get minor ones that come and go get 1 lymph that starts to swell once in a while muscle pain and weakness sensitive to light sometimes and sometime itchy skin and also have anxiety always had it though since i was 15 lyme hiter came out negative does this sound like CFS to you guys im a 27 yr old male haven't felt normal since.
Posted 8/7/2006 5:19 AM (GMT -8)
panicky, see my response to you under your post in the epstein barr virus thread.
Posted 8/12/2006 6:32 PM (GMT -8)
hey, you could check the Mercury toxification from amalgam fillings if you have the fillings. that could cause CFS too. and all the symtoms you have.
Posted 8/28/2006 5:44 PM (GMT -8)
I heard today on a TV health show that some doctors from the WHO, (World Health Organization) think that CFS and FM may be caused by a fungus. Have any of you ever tried an antifungal diet, eliminating sugars, yeasts, grains to see if that would help you? Just wondering if there is anyone out there who has tried such thing. I also read it the same thing in a book, called "The Fungus Link" by Doug Kaufmann. Wonder if there is anything to that...

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