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Chronic Fatigue Syndrome
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Posted 9/28/2006 1:21 AM (GMT 0)
I have been sick for one year.  I have had a lot of the symptoms of CFS- sore throats, headaches, muscle aches, dizziness, anxiety, panic attacks,dark circles under eyes, jaw pain,ear pain, and many more. For the last few months all of that stopped except for the occasional dizzy spell, fatigue has never been my main symptom- I sleep 8 hours per night that is it.  So while most symptoms have gone I still feel so ill and horrible. I have most things under control- I can do alot, but I still have this horrible ickkkkk feeling in my body.  Lately I have had clammy hands and feet.  What could this be.  I have been tested for everything and all is negative.  I don't think it could be Lyme because I would not be getting better w/o treatment.  I have had severe, horrible symptoms.  Now it is mostly the ick feeling and muscle pain.  What is it????? Can anyone relate?? I have also lost 13 pounds- I was thin to begin with.  I just feel like it would be better to be dead then feel this way- I am not suicidal, I am just trying to make a point of how gross I feel.  Is this CFS or did my doctors miss something?

 

Posted 9/28/2006 1:48 AM (GMT 0)
Hi aquarias -
I'm sorry you're still feeling so awful. I don't know what you have, but I do want to tell you that lyme symptoms often wax and wane. It could still be possible for you to have it, even though a lot of your symptoms have gone away. It mainly has to do with how strong your immune system is. When it is weak, the bacteria reproduce and essentially have a party in your body. When it is stronger, you may be able to stave off a lot of the symptoms and fight some of the lyme on your own. This is the theory that explains why some people get better with just a month or so of antibiotics (their immune system can take over from there), and for some people that is not enough.
Anyway, I hope you find answers soon. I just didn't want that to be the reason you ruled out lyme.
Posted 9/28/2006 1:48 PM (GMT 0)
Alfers, Thanks for your reply.  Is this very ill disgusting sick feeling consistent with Lyme disease?  I am thinking of going back to the doctor to run some more Lyme tests- Qbowen and there is one other that are more sensitive. I feel like we have missed something. It is not like I just want to sleep all the time, it is so much more- horrible symptoms, it has been a year, I can't take it anymore. I was healthy, always at the gym, and happy.  Every test I have done- and believe me it is probably in the thousands, all keep coming back negative. thanks for your response!
Posted 9/28/2006 3:28 PM (GMT 0)
Yes, the ill feeling ("malaise") is a typical lyme symptom. I always felt like something was wrong, like maybe I was about to be really sick, about to throw up, had something very bad that nobody had diagnosed...And I did (lyme)! It's good you're looking into more testing. The Bowen lab test and the IgeneX test are the ones that are most sensitive -- lyme tests run by other labs (like Quest or LabCorp) are virtually useless. They actually don't even include results for the two bands of the western blot that are specific to lyme disease! I have no idea why, but that's the case. If you do come back with an equivocal or positive test, then you should see a lyme doctor who can test you for co-infections too. I believe nearly everyone who has lyme also has at least one co-infection, and some of them need different kinds of antibiotics (I'm on an anti-malarial drug right now, for example -- fun fun). I'm not sure about the Bowen test, but you can actually order and IgeneX test kit from their website (www.igenex.com, I think) and take it with you to your local doctor.
Good luck. Keep us updated!
Posted 9/28/2006 4:06 PM (GMT 0)
Alfers, would I be getting better without treatment though? I have to admit I am getting progressivly better month by month- I just still feel so awful though- but nothing like the first 6 months.

Posted 9/28/2006 11:32 PM (GMT 0)
Hi aquarias -
Check back in on the lyme forum -- a few more people have responded. A lot of lyme symptoms come and go, so you could have many different symptoms.  It actually sounds like you now have more neurological symptoms than you had before.  Panic attacks, new onset depression, anxiety, and bipolar disorder, tingling in hands and feet, memory problems, and general confusion/brain fog are all common signs of neurological lyme.  Is it possible you're feeling physically better but mentally worse?  This would be consistent with lyme progressing.  Many of my physical symptoms went away when I started to develop cognitive problems.  That's a pretty standard progression for lyme. 

Post Edited (alfers) : 9/28/2006 5:37:50 PM (GMT-6)

Posted 9/28/2006 11:50 PM (GMT 0)
Actually the mental part is getting better.  I just still feel a lingering sickness.  I had severe anxiety for awhile- that was horrific.  I am getting past that with the help of meds, therapy, and of course time. Today my therapist said that this could possibly be the last stage of my illness- God I hope so. Thanks for your posts!!
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