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Update on visit to Dr. J not what we expected

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Lyme Disease
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Posted 4/23/2009 1:21 PM (GMT 0)
Dr. J. was very kind and seemed very knowledgeable. He said that my husband currently has no quality of life. He has had 68 patients with the same severity as him with previous ALS dx. Only 5 of them came back from this. He believes that all ALS is late stage lyme and some forms of MS. Ed also had a lyme induced MS dx. He said that ALS is being treated in clinical trials with rocephin and has shown improvement in early ALS. He didn't have much hope for Ed to recover but if he could find the right combo of drugs he may show improvement. (a better quality of life) He said he has never been treated with the penicillin family and ordered 4000 mg of amoxicillin and 300 mg doxy daily, very agressive. So the ALS -lyme connection is showing its ugly head again. He would also like him to go back on rocephin if insurance will cover it. He did backslide after going off rocephin but at the same time his testosterone levels had dropped drastically and we never put the two together and our other llmd didn't either. Hope someone can give us their thoughts on this and add in a few prayers too? Thans, Bev
Posted 4/23/2009 1:40 PM (GMT 0)
I am sending my prayers your way but have no information I can share. I am really sorry for his suffering and hope that this treatment will help him.
Do you have the book, Cure Unknown? It might be worth reading because it tells the story of a doctor diagnosed with ALS that recovered with lyme treatment and then set up a clinic in Colorado specifically for misdiagnosed ALS patients. He had given up on life and as a last hurrah took a trip to Africa. He had to take anit- malerial drugs and while on them improved so much he was up and about enjoying himself. After returning home he began to decline again. Finally he put things together and started treatment for lyme and babesia, which he had suspected but his associates dismisssed. He never became completely cured but he controlled his symptoms and opened his clinic where people came for help from all over the country. He said when the person is unable to walk it has often progressed too far to help. I believe he retired but his clinic may still be open. If you would like more information I will look it up in the book for you.
Posted 4/23/2009 2:30 PM (GMT 0)
Thanks for your reply Nefferdun, I have the book but it has been so long since I read it that I had forgotten about Dr. Martz. I will check into his clinic and see what I can find out. I have to re-read his story also. I appreciate your concern and that you remembered his story. Everything helps more than you know. God Bless. Bev
Posted 4/23/2009 2:37 PM (GMT 0)
Bev,

I am praying for you and your husband too!!

God Bless!

Posted 4/23/2009 8:17 PM (GMT 0)
I am praying for your husband and for you as well. Let's all be optimistic. Sending healing vibes to Ed...
Posted 4/23/2009 11:34 PM (GMT 0)
I'll keep your husband in my prayers and am sending lots of positive, healing thoughts your way. Hang in there.
Posted 4/24/2009 12:40 AM (GMT 0)
I'm keeping you and your family in my thoughts and prayers. Hang in there.
Posted 4/24/2009 12:53 AM (GMT 0)
Hi Bev,

I am so very sorry to hear this.  I know a young man who was in the same situation as your husband (he was diagnosed with ALS, etc., etc.) and was near death.  Today he is doing wonderful as he changed his treatment protocol.   So please don't give up hope. 

If you want, you can e-mail me as I could give you some useful information.

I will keep you both in my prayers,

Denise

Posted 4/24/2009 12:56 AM (GMT 0)
I will also keep you both in my prayers - sending healing vibes and energy to your husband. I hope so very much that he gets better with treatment!!
Posted 4/24/2009 1:42 AM (GMT 0)
Dear Bev,

If you have a moment to send me an email, I can update you on the Colorado clinic and the point of contact for your and your husband.

I am praying for God's grace and mercy, His wisdom and blessing to your husband and to you.
Stand firm.

Blessings,
~diana
Posted 4/25/2009 3:02 AM (GMT 0)
info forwarded Bev. Take care! Blessings, Sojourner
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