posted
I just found your site and need some help. We have three girls (17, 14 and 10). Our middle daughter age 14 has been out of school for 6 months. She is a straight A student, involved in all sports and band. Well grounded with a healthy group of friends. In January she came down with what was thought to be migraine headaches. 6 months later she has been in the hospital 4 times being treated fro migraines, but nothing has worked.
She actually went skiing in Colorado and returned home one week before getting headaches.
We finally insisted tht our Dr. do a test for Lyme Disease. Of course, the test came back negative, but we are convinced that she has Lyme's - certainly all her symptoms are consistent with it. She has had blood tests, CT scans, spinal tap, bone scan, etc. but nothing has showed anything conclusively. We would like to have another test done, but can someone suggest a reliable test that does a better job than the standard ones used in the medical community?
Second, has anyone had success with any homeopathic approaches to treating this disease?
Thanks for your help!
Posts: 3 | From Frisco, TX | Registered: Jul 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi fiscofive
I am so sorry to hear about you daughter's migranes and hope she can find some relief soon.
The best advice I can think of suggesting is to find a LLMD( lyme literate MD) because lyme disease is a VERY complicated disease to treat. You can post a question in "seeking doctor section" to try and find one near you.
If you suspect lyme the best test is at www.igenex.com in CA their phone is 1-800-832-3200
It is really crutial to find a lyme literate doctor that knows how to read the bands of a western Blot and treat lyme and the co-infectons too. The blood tests for lyme disease are inaccuate and a CDC negative doesn't mean much. The blood tests can be up to 50% inaccurate.
After a while the bacterium that causes lyme is not so much in the blood stream as they are more in the tissues and organs.
Also The CDC and many labs do not read all the bands, and many of the more important bands where taken off the original test by the CDC for various reasons.
Here is a link that talks about the western blot and why some people can have lyme and test CDC negative:
I hope you can find some relief and cause of your daughter's illness soon.
Welcome to lyment and check out the "newbie links in the Medical Section. It's the 4-5th post down from the top. A wealth of information there.
Sorry I don't know much about homeopathic treatments for lyme.
There are several long timers here from TX and hopefully can give you some more suggestions
Goodluck and take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Hi Dad, Glad you found us finally in your quest for ACCURATE info.
I suggest WESTERN BLOT IGM & IGG blood test be performed for lyme disease; test nos. 189 and 188; she may had a co-infection or two. This costs $190 at Igenex in Calif.
What type of insurance do you have since she's too young to be on medicare & the tests paid for?
Testing should be sent to 1 of the 3 lyme/co-infections diagnostic labs only for teting of ALL bands:
1...Igenex, Calif.
2...MD Labs, New Jersey
3...Bowen Labs, Florida
FYI, Igenex diagnosed me 2 yrs. ago. Recently had complete body labs done. My Igx positive numbers were greatly reduced from 2 years ago.
My MD labs for mono/epstein stein virus showed 3 typed from 36 years ago, HHV-6 human herpes virus 6, and simplex herpes virus; both non-sexual.
Bowen 1 hr. ago was sent blood for co-infections; NONE found but lyme disease was.
IGX sends your MD a copy of the protein bands that are positive/negative/inconslusive ... get a copy of 2 of this if you have the blood sent there.
Go to each of their sites and print off their blood lab test.
I will send you by private message, PM, my newbie links to visit which includes TREEPATROL'S NEWBIE LINKS!
natural ways, look for JIMBOB's nickname. He talks about supplements.
There are teens your daughters ages on here too for them to have someone to talk to walking in their shoes. Bettyg
posted
I have only been here a few days but I have something natural I am going to try. PM me if you want to know how it turns out.
Posts: 10 | From Quad Cities Illinois | Registered: Jul 2006
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posted
Sent you a private message, it sounds like my story with my son.
Amy
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter started with migraines at that same age. It was then three years of specialists and siraling health until we finally found a doc who would treat her.
You aren't alone, and I'm so glad you found us and can start the process early.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm sorry your daughter is going through this and also add my vote for Igenex as best testing lab.
Like your daughter, I too showed up negative for all tests as my health continued to deteriorate. Finally, via Igenex, I tested CDC positive for Lyme.
I'm a big proponent of acupuncture and Chinese medicine. Early on, I asked my acupuncturist if she thought I could take a natural or homeopathic course to cure this. She said that if I were in China and had Lyme, I'd likely be placed on high-dose antibiotics first.
Speaking only for myself, I feel antibiotics are saving my life. I'm much much better than I was when I started treatment a year ago!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Let me get in line here for testing at IGeneX.
My first and most debilitating symptom: Migraines. Nonstop. Aspirin? A joke.
The ELISA or preliminary lyme test most doctors give you? Negative. Forget it. Another joke.
A good western blot at IGeneX? CDC positive.
Today, after a year in treatment...getting there, almost migraine free. (Also had babesia WA1).
Do not pass go, do not collect $200. Spend it on a good test and find a good doctor.
Hope your girl finds some relief soon -- life's not much fun with a constant headache...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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