AP and Remission?

[EJ Kirksey]

Has anyone went into remission while on Minocycline or Doxycycline or with a combination of other drugs added? I’ve been on Minocyline and now Doxycycline for almost 4 years now and would love to go into remission or to just get my CPK count lower. I’ve slowly been getting a more and more larger pattern of inflammation in my legs. When I started out with PM I only had a small area on the back of my leg calves and now the areas are more spread and larger on my legs. Appreciate any info or links to read about remission and AP Therapy. I do believe that diet plans a most important part in causing inflammation in our cases. Four months ago my CPK was 1,100. Guess that’s better than the almost 4,000 range 3 years ago. I just want to try and get it lower.

[EJ Kirksey]

I’m also a diabetic 2 and have never taken steriods and don’t want to and am looking for other alternatives that might help me to get my CPK’s lower or for me to go into remission. Everyone tells me that you can’t go into remission with PM or DM.

[PhilC]

Hi,

Have you considered trying LDN?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

Hi EJ,

Are you seeing an experienced AP doctor? It’s great that your CPK is so much lower than it was four years ago, but have you considered that minocycline alone may not be enough in your case? Dr. Brown employed many other classes of abx in addition to the tetracyclines, depending upon a person’s pathogen load. It may just be that you’re dealing with pathogens that would respond to a combination therapy.

I was just doing a little researching tonight and fell upon a very interesting study by a rheumatologist who was hailed as having discovered Lyme disease in CT back in the 1970s. In fact, he thought it was a virus at the time and it was a guy, called Willy Burgdorfer, who identified it as the borrelial spirochete. In any case, this rheumatologist did some early research on this pathogen and came up with some interesting findings that he has now retracted (Lyme politics!). He’s now considered a pariah amongst chronic Lyme patients and has done much damage to countless folks due to the retractions of his earlier findings:

http://www.ncbi.nlm.nih.gov/pubmed/2847622

“Finally, the perivascular lymphoid infiltrate in clinical myositis does not differ from that seen in polymyositis or dermatomyositis. All of these histologic derangements suggest immunologic damage in response to persistence of the spirochete, however few in number.”

Here is a more recent case study:

http://www.ncbi.nlm.nih.gov/pubmed/19587255

And, there have been a number of cases of Lyme tied to dermatomyositis. In general, these patients seem to do much better on combination abx therapies. A past volunteer here, Parisa, found that her husband, who had a severe case of DM, also had Lyme disease, and it was only when they began aggressively treating with combination abx therapies that he managed to reverse his swiftly advancing disease. As of last year, he was in remission and the last vestige of his disease was some hand damage for which he had surgery to correct.

Just a suggestion, but if you haven’t yet looked into this possibility, it could be worth your while to do so. If we can suggest any resources to you for this, would be happy to do so. 🙂 As Phil has suggested, LDN may also be a helpful adjunct. Eva Holloway who occasionally frequents this forum has done well on a combination of minocycline, biaxin and LDN.

Do hope you find some answers, EJ!

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