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At the last ILADS conference (International Lyme Disease Association) held in November, doctors talked about Lyme and Mitochondrial Disease. They didn't formally link the two but talking about both was super interesting to me. My sister has suffered severely from Lyme for 5 years and was also diagnosed in 2010 with Mitochondrial Disease; compounding the issue and treatments for her.

There is some improvement for her already- no longer walking with elbow crutches; still needs a cane but her balance is better, still has pain, and tires easily. She is taking supplements and is receiving physical therapy called Feldonchrist- this treatment consists of re-training her body movements and the development of new nerve pathways. She's also learning to conserve her limited energy ex.: no more unnecessary trips up and down stairs, etc. so she has some strength to do some of the things she loves in moderation: spending time with her horses and miniature donkey... If you remember, this is same person who not too many years ago was a runner, avid horsewoman, member of the sherriff's dept. posse for mounted search and rescue, and manager of Curves (women's workout center).

Doctors in Europe have seen marked improvement in some of their patients taking new supplements. These supplements will only be available for purchase in the US through a doctor's office. Her doc is currently going through the licensing procedure to be able to offer them. Sis has excitedly offered to be one of their trial patients. She knows that she may not benefit from them, but it will tell the doctors more about treating others.
Looks like I'm out of typing space- I'll post again. reason

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Health Ace
6517 posts
REASON!!!!!

So glad to hear from you again...

Have you gotten any of my follow up reply messages? not sure if they were going through.

Im so glad to hear that you were able to go to a couple confrences to further educate yourself (and others) on this RARE disorder.

looking forward to talking more. and so glad to hear that things are slowly but SURLY improving for your sister ;-)
B.R.
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BR-

Received your follow up reply messages- I haven't been able to login to site. Site administrator is working on it- I can finally login and post but haven't been able send replies yet...

We'll see if this one goes through...

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PS Check your mailbox next week- sent out by snail mail today-
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Health Ace
6517 posts
hey it went through!!!!

AND I will THANK YOU :-D :-) ;-) ;-)
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B.R.-

YEA! Still unable to send private messages or reply to them: when I submit, a red box appears saying "error- access denied". Techs for this site have been good too; getting back to me right away- they've tried on their end and they see the same thing. They don't know why this is occuring but are working on correcting the problem...

Finally we can connect again- I've been at such a loss...

Thanks for being there,

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Health Ace
6517 posts
yea the administrators keep updating the site and different glitches are created but usually they are able to resolve them pretty quick. I was not getting notifications about posts for the longest time then i started getting them again after i inquired about them.


but yes i too am very glad we have contact again.
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