Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I don't know of a link but I was reading recently where minocyclene, which is used to treat lyme, has also been successful in inhibiting Huntington's Disease....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Huntington's has a genetic cause (although infection and toxic states would negatively affect, likely more so than someone without HD).
If HD is suspected, it is very important to have the genetic test and to go back over the family tree. It would also be important to address heavy metals, chemical toxicity in environment and food, etc. to help as much as possible.
I cannot stress enough the importance of getting that gene test. If identified before any symptoms may develop (or early on), supportive measures might make a huge difference.
For sure: avoid aspartame, even a trace of it can make HD much worse (as it seems to have done for a friend of mine who just can't give up diet soda).
posted
Is the genetic test for HD commercially available at this time?
Posts: 822 | From midwest | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: Is the test available?
The HD web site - and other good sites - can tell you more.
My friend had no problem getting the test a couple years ago. I've also seen several news magazine such as "60 Minutes" interview families where young adults had the test, or decided they did not want it.
As I understand it, if one has blood relatives with HD, their chances are higher for having the gene. However, they may not have it. And, if they do have it, it's not possible to predict exactly what the future will hold regarding the timing or the severity of symptoms -- but it would sure be helpful to know so that some measures could be employed that might be somewhat protective.
It would be important to get assessed ASAP. Knowledge is power, truly. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
A Guide for Families � Genetic Testing for Huntington�s Disease
Excerpt from section II. Genetic Testing:
How can I be tested?
A blood test is now available that can determine, in almost all cases, whether a person has the HD gene. This test cannot, however, predict when symptoms will begin or the course of the disease.
There are three categories of testing:
Presymptomatic testing, for people at risk for HD, is the type of testing which will be discussed in greatest detail in this publication.
Confirmatory testing determines whether people showing possible symptoms actually have HD.
Prenatal testing is used to determine whether a fetus is at risk for HD. This can be done by amniocentesis or chorionic villus sampling (CVS). . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Backing up. I forgot to mention that not all kinds of chorea are due to HD. You seem sure that HD is the definitive diagnosis for the family member(s) about whom you write.
However, if HD has not been specifically dx, remember that chorea can have other causes of non-HD chorea. This is just one link about that. I suspect many other causes not included here but you can also do a more extensive search. ------------------------
Choreia (or chorea) is an abnormal involuntary movement disorder, one of a group of neurological disorders called dyskinesias.
The term choreia is derived from the Greek word χορεία (=dance), see choreia (dance)), as the quick movements of the feet or hands are vaguely comparable to dancing or piano playing.
The term hemichoreia refers to choreia of one side of the body, such as choreia of one arm and not both (comparable to hemiballismus). . . .
Causes:
Choreia can occur in a variety of conditions and disorders.
Choreia is a primary feature of Huntington's disease, a progressive neurological disorder.
Twenty percent of children and adolescents with rheumatic fever develop Sydenham's chorea as a complication.
Choreia gravidarum is rare type of choreia which is a complication of pregnancy.
Choreia may also be caused by drugs (levodopa, anti-convulsants, anti-psychotics), metabolic disorders, endocrine disorders, and vascular incidents.
Ataxia telangiectasia
Wilson's disease, a genetic disorder that leads to toxic levels of copper in the body. . . .
. . . .
====================
Magnesium deficiency could be to blame for some manifestations of chorea, too.
Aspartame and MSG, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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HD is my worst fear but I do not yet know what is at the stake. All things come to point at that direction, but that doesn't mean there is nothing else out there that's a possibility.
It has been a hell of a day in my mind since the realization of what might be. I seem to have a hard time concentrating.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Ok, now I actually looked at the file and saw the test for HD by LabCorp. It says both Huntington alleles have been tested - both CAG repeats are within normal range (below 30). I just didn't realize that was the genetic test.
Thank you for educating me. I was panicing.
How accurate is this test done by LabCorp? Anyone knows?
Posts: 822 | From midwest | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is where you need to contact several different HD patient organizations to ferret out the best information regarding what labs have the best tests and accuracy, etc.
My guess is that any lab that does a genetic test would do it correctly, though. It's far different from looking for stealth infections. Of course, it's always important to ask - as the tests are always being refined.
It's good to know that the signs point away from HD, although, you do need to learn more about the specifics of testing and if this would need to be revisited with development of any new research methods.
On the other hand, you might find out that you had the best and most definitive test there is - that would be so good to know for sure but, at least, you can sure breathe easier now having looked back at past lab work. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Well, looks like we are not all out of woods yet - apparently there are such thing called HD-like syndromes for those who are genetically tested negative but clinically exhibit HD symptoms.
I am so scared...
Posts: 822 | From midwest | Registered: Apr 2009
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posted
I've been all over the internet looking for something promising for HD, a condition that a friend of mine has. Found nothing.
However, yesterday I asked my LLMD whether he might know of anything that might be of help for it. He said that LENS therapy is working/helping? It's some kind of neurological therapy. I said that HD is genetic but he still said it pertained.
To find information about it, look on the internet for LENS, brain mapping. I'm checking out a book from the library called "The Healing Power of Neurofeedback: the revolutionary LENS technique for restoring optimal brain function" by Stephan Larsen.
I know a woman whose daughter with neuro lyme is using it and they are having positive results. There are practitioners but I don't know yet how to find them.
Good luck with this awful condition. Hope this helps.
Posts: 258 | From Spokane, WA | Registered: Oct 2008
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