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Tonya, what are you using for your rash and scalp issues? I am also having those issues and it is driving me crazy! I just got back from having my second IV therapy in 3 months. The first one in May went well but I really have the muscle weakness and the terrible rash this time. Who do you see for your AP therapy? I also live in Des Moines and would love to keep in contact with you
Julie
I don't have the scalp and skin rashes. My skin is just discolored looks like bruises in different areas.
I see Dr S. in Ida Grove and I really like him alot. I contacted him about coming back for a 2nd round of treatments. I also have extreme muscle weakness in my calves and shoulders. I have started water therapy which helps a lot but for right now I am not able to go to my fatigue. I am hoping to get back to it very soon.
I would love to keep in contact with you.
Tonya
Tonya,
My husband is basically recovered from full blown dermatomyositis with pulmonary fibrosis. Treatment with a Lyme/Babesia protocol and IVIG were what turned things around for him.
Parissa,
Thanks I will check into the IVIG therapy. I have heard that it is very expensive and not sure how much if any my insurance will cover.
Tonya
Tonya,
My husband's insurance covers it 100% Getting it authorized by insurance is the hard part. The rheumatologist used an infusion company (Crescent) that knows how to get it covered.
Tonya,
My husband is still receiving it. For the first two years, he would have the infusions two days in a row once a month. That is a pretty common protocol for myositis. I've heard fo other protocols where it is once a week or 5 days in a row every month but they may have been for other conditions. For the past six months or so, the infusions have been stretched to every six weeks. I believe in the next six months or so we will probably either lower the dose or stretch the time period again.
Tonya,
We met in Ida Grove in April. I'm sorry that you are not feeling much better. It does take time. Read as much as you can on this site. Read about Parisa's husband, maybe it can give you some hope. He has really come a long way. I have thought of you and wondered how you were doing. I will keep you in my thoughts and prayers.
Judy
Judy,
Funny I was just thinking of you and Miriam also. I do feel somewhat better. I don't have the pain and stiffness that I had before. Now I am just dealing with fatigue and muscle weakness. I e-mailed Dr. S. to see if I could come back for another round of treatments but I am guessing I am probably not being very patient, like he would say, If only I could get over the fatigue I think I could deal with everything else.
It is so good to hear from you
Keep in touch!
Tonya
Tonya,
I think you insist on the LDN for Dermatomyositis, as it should help with your energy level, and jump start your thyroid, as it did both for my wife Kathryn. It also helps with the rash (slowly) and the muscle strength. If you are already taking thyoid meds then you may have to titrate down on them,while slowly titrate up on LDN. This process took Kathryn about 5-6 months as she started on 1.5 mg of LDN per night,and slowly got up to 4.5 mg per night, whild her MD monitored her thyroid level extremely closely.
Alpha Lipoic Acid helps increase the effectivness on LDN, and LDN works very well with Minocin. This protocol saved her life. (also no more cancer, no more heart & lung problems) and her DM continues to improve all the time.(she even hiked up a mountain trail last week, (while it was impossible to stand two years ago).
-Jim
jtubman,
I have been off LDN since the middle of July and hope to get back on it soon again. I decided I can do with just the Tylenol right now, and unless I have some severe hip pain I will be off the medication with codein in it. I know I have to wait about five days:headbang:, so today is the first day. I need a new script for the LDN. Can I ask my doctor just to give me the pills and I do the diluting with distilled water myself and take like 4.5 mg liquid a night.? The LDN realy helped a lot. I still take ALA every day evenso I am not taking the LDN right now.
Glad your wife is doing well, I had some iv antibiotic in the hospital and my hands went from terrible to absolutly marvelous in two days. I did get a total printout of everything they gave me or did at the hospital and I am taking it to Dr. K. on Friday, because some of the little problems are coming back on my hands. They are not as red as they had been, but a few other minor things have come back.
Tonya,
The LDN realy helps. take my word. I have DM and I have been fighting this for five years. Most of it was before I went on the AP, but now I am doing better and I know it is the LDN, ALA and Monxin helping. It is a slow process, you have to be patient. I think I say that to every person that starts on LDN.
Eva:D
Eva Holloway
low dose Naltrexone, the most you use is 4.5 mg each night before you go to bed about 10 pm. Look up LDN on the internet. Just the three letters will do.
Eva:D
Eva Holloway
Julie & Tonya,
Here is a copy of my Dec 8/09 posting,as you can watch short video on how a doctor treats Dermatomyositis using LDN, please click the link below & watch it:
Here is the latest interview of Dr.Burt Berkson in New Mexico about treating R.A.,Lupus, DM, cancer, M.S. etc with LDN and ALA (Alpha Lipoic Acid), and his success rate with the auto immune diseases which he states is the best category of success running at least 90%. -Jim T. (for the newbies, this is a repost of my June 6/09 posting; this video was made in the Spring of 2009)
http://www.youtube.com/user/mercola#all/uploads-all/2/FRI5f69N2eo
Also, there are many medical interviews of Dr.Burt Berkson M.D. on Youtube, and Google Video I believe. I think he is the best authority as far as doctors on using LDN to treat auto immune diseases, as he is always the keynote speaker at the LDN Conferences held every Fall in the USA,and every Spring held in Glascow Scotland.
DrBerkson learned about LDN from Dr.Bihari in NewYork(who was using it to treat his Cancer patients), see http://www.ldninfo.org , and Dr.[highlight= #88ffff]Berkson expanded the LDN protocol to auto immune diseases such as R.A., Dermatomyositis, Lupus etc. See http://www.drberkson.com
-Jim
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