posted
I HAVE CFIDS, FIBRO.,LIGHT SENSITIVITY,HYPERACUSIS. NEURO. DR. QUESTIONS BELL'S PALSY. NO REAL ANSWERS. ALL TESTS COME UP NEG. JUST SAYS TO TAKE NEURONTIN FOR L. CRANIAL PAIN. CFIDS DR. (WHO IS INFECTIOUS DISEASE HEAD) AT MY HOSP. SAYS IT'S PROBABLY DUE TO HSV1. THANKS SOOOOOO MUCH FOR ANY REPLY.
[ 17. October 2005, 06:39 PM: Message edited by: deliellie ]
Posts: 12 | From BOSTON, MA | Registered: Oct 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Get a new doctor. See the CFS/FMS page on my site at www.BetterHealthGuy.com. I was dxd with CFS for years and turned out to be Lyme. I'd get the iGenex tests done to start.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I had a misdiagnosis of CFS and later also Fibro for 14 years.
A year+ into treatment for Lyme (after positive Western Blot test) I am markedly improved.
Get checked out by a Lyme literate MD
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Deli-Ellie. Neat name.
Definitely find a new doctor. Your symptoms sure seem to scream out "Lyme" !! Light sensitivity and Bells Palsy??? Sheesh! Hyperacusis???!! That is still one of my worst things. Wanna see me jump six feet? Make a loud noise. It's one of those weird things that's usually a real giveaway for Lyme.
If you can't get yourself to an LLMD (Lyme Literate Doctor as opposed to whatever Duck you're seeing now who just wants you to take your Neurontin and move along), at least get him to sign the lab request for a blood draw from IGeneX. Go to their website. Ask for the IgM and IgG tests - the Western Blot kits - to be sent to you - they even come with a free mailing label back to IGeneX. Have your local lab draw them. Get your doc to sign off. Write your credit card number on the top, ship it on a Monday, and you will be greatly assisted in your search for an answer! Then you can start getting better.
Read the newbie links on page 1.
Hang around and ask lots of questions.
Don't take your old doc's word for anything, especially the results of your IGeneX tests. Post them here!
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I was also diagnosed with CFS and Fibro for 15 years. I was tested by Igenex for lyme and I came up positive. My daughter and husband also have it.
I would highly suggest you be tested by Igenex and find a good LLMD. I was glad to find out I had lyme because it can be treated and we have the hope of getting better.
Take care, Sapphire101
Posts: 495 | From KY USA | Registered: Dec 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Fibromyalgia is usually Lyme when mis-dxed- CFIDS is usually Babs when misdxed-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I agree with the replies you've gotten.
Get to an LLMD!
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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I wasted about 12 years w/ a CFIDS diagnosis and before that I was labeled neurotic or depressed or something psycho like that!!
Also, unknowingly passed this to my baby and after 12 years, she was finally diagnosed
Husband too - Lyme for him so far
Lyme, Babs and Bartonella for me and the kiddo has mustered up positives for lyme and Bart too!
Those are just the positive test results - clinically, we all present w/ all three!!
Katie had an incident of Bells Palsy when she was about 2 years hold. Had I been aware of my lyme then - it would have probably made a HUGE difference in her treatment outcome!!
RUN and find you a GOOD LLMD!!
Take care - Sherry
-------------------- Posts: 704 | From Huntsville, Texas | Registered: Oct 2000
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
quote:Originally posted by CaliforniaLyme: Fibromyalgia is usually Lyme when mis-dxed- CFIDS is usually Babs when misdxed-
Hate to sound dumb.......but can you explain why this is?
posted
I was misdiagnosed with cfids too and wasted a lot of time, got worse and was given meds that made the lyme worse (steroids)!
Get to a llmd as soon as you can. If it is lyme (btw I had bells palsy and hyperacusis too) the sooner you treat adequately the easier treatment will go.
Good luck to you.
Posts: 925 | From California | Registered: Sep 2004
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WildCondor
Unregistered
posted
Welcome!
What everyone needs to realize is that chronic fatigue, fibromyalgia, and arthritis are not diseases by themselves. Of course, they are real, but they are symptoms, not diseases. If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense! You need to find out the cause! Lyme disease, and the bacteria b.burgdorferi are a cause of chronic fatigue. People join chronic fatigue support groups, they go on disability, they tell their family "I know what's wrong with me now, and I have chronic fatigue." I still find it amazing just how many people get sucked into this giant conspiracy and line of thought. None of it makes any sense, yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with an undiagnosed and untreated infection.
Many thousands of people believe they have fibromyalgia, chronic fatigue syndrome, depression, multiple sclerosis and more, and still they have no idea what the cause is. Wake up people and think with your brains! Normal, healthy people do not just suddenly come down with MS, or are exhausted all the time for no reason, there is always a cause. Do not buy into the word syndrome either; it is just a word for a collection of symptoms for which the doctors label a syndrome because they have no idea what is wrong with you. The same thing is true for treatment of diseases. People seek out a cure, and what they get is not a cure, but medication to treat the symptoms. An example of this in Lyme disease is anti-inflammatory drugs, NSAIDS, or steroids prescribed to treat painful joints. The medications will work on the symptom, the pain, but the cause of the pain goes untreated. The smart treatment would be antibiotics, which directly kill the cause, plus supportive prescriptions to treat the symptoms and make the patient more comfortable. Therefore, in the previous example, the patient benefits from treatment aimed at the cure, plus they get symptom relief. Seek the cause people, always seek the cause. I would get to a LLMD and have a full work up done, to atleast try to rule it out.
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I HAVE CFIDS, FIBRO.,LIGHT SENSITIVITY,HYPERACUSIS.![[bonk]](graemlins/bonk.gif)
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