Update on visit to Dr. J not what we expected

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themerks
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 4/23/2009 6:21 AM (GMT -7)   
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

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/23/2009 6:40 AM (GMT -7)   
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.

themerks
Regular Member


Date Joined Jun 2008
Total Posts : 21
   Posted 4/23/2009 7:30 AM (GMT -7)   
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

Weary1
Regular Member


Date Joined Oct 2006
Total Posts : 127
   Posted 4/23/2009 7:37 AM (GMT -7)   
Bev,
 
I am praying for you and your husband too!!
 
 
"Greater things are yet to come and greater things are still to be done in this city" - Chris Tomlin
 


lemonsnotlymes
New Member


Date Joined Mar 2009
Total Posts : 10
   Posted 4/23/2009 1:17 PM (GMT -7)   
I am praying for your husband and for you as well. Let's all be optimistic. Sending healing vibes to Ed...
Tested postiive for Babesia, Mycoplasma, EBV, HSV, Lyme still only 41++
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 4/23/2009 4:34 PM (GMT -7)   
I'll keep your husband in my prayers and am sending lots of positive, healing thoughts your way. Hang in there.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/23/2009 5:40 PM (GMT -7)   
I'm keeping you and your family in my thoughts and prayers. Hang in there.
Symptoms started in 2003 with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder. Took Lexapro for two years and symptoms never got better. Suffered off and on for years.
2007 found an LLMD and was diagnosed with Lyme. WB was negative but had ++ on Lyme specific numbers. I decided to not do treatment because I didn't know enough.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, couldn't find the right words, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.

Illnesses:
-Chronic Lyme Disease
-Hashimotos Thyroiditis
-Ulcers
-Hypoglycemia

Medications:
-Biaxin 250mg to start (starting slow and working my way up)
-Mepron
-Ultram(muscle/joint pain)
-Thyro Complex 60mg(Thyroid)
-Probiotics
-Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4297
   Posted 4/23/2009 5:53 PM (GMT -7)   
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
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 4/23/2009 5:56 PM (GMT -7)   
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!!

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 4/23/2009 6:42 PM (GMT -7)   
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
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 4/24/2009 8:02 PM (GMT -7)   
info forwarded Bev. Take care! Blessings, Sojourner
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth

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