Substituting Erthromycin for Minocin

[fastspinW]

Hi,

As I mentinoned a few weeks back I have been having a terrible time with leg cramps for several years. More and more I've come to suspect that Minocin is related to these cramps despite the medical establishment's statements to the contrary! A few months back I stopped the Minocin and with 2 weeks the leg cramps were all but gone. I then tried Doxycycline which didn't seem cause leg cramps but wound up sensitizing me so to the sun (I'm a boat captain) that despite layers of SPF 50 I got burned to a crisp.

Having gone back to Minocin I was sorry to see that within 10 days the leg cramps were back!

I know that Erthromycin is sometimes used by AP docs and I was wondering if it might be worth a try. Interestingly enough I used it for a year or so many years ago for a totally unrelated illness and while I was using it my RA went into remission. Sadly I didn't connect the two events at the time but when I discovered the AP program 5 years ago I told my doc that I had performed a triple blind study on Erthromycin and it passed with flying colors.

“What,” he asked, “is a triple blind study?”

Well, I answered, I didn't know what I was testing, my doctor didn't know what I was testing, and nobody else knew what I was testing. Pretty much eliminates preconcieved notions don't ya think?”

He didn't laugh so I kept taking the Erythrmycin and got a new doctor.

Anyway, does anybody know what the starting dose of Erthromycin usually is?

All best,
Winston

[Maz]

[user=313]fastspinW[/user] wrote:

Anyway, does anybody know what the starting dose of Erthromycin usually is?

Hi Winston,

You might be interested to read this thread that was posted a while back re: important drug interactions with Erythromycin, which could be relevant to any APer, if biaxin or diflucan have ever been taken or the other medications listed:

http://rbfbb.org/view_topic.php?id=1886&forum_id=1&highlight=erythromycin

I'm sorry I'm not aware of the specific doses for Erythromycin as a substitute for the tetracyclines, though it is mentioned here under FAQ #2:

http://rheumatic.org/faq.htm

I also checked in the New Arthritis Breakthrough and couldn't find a reference to erythromycin dosages as used by Dr Brown, though on Page 259 under the section entitled “Looking for Low Risk Alternatives,” he says,

“I soon found there was one class of antibiotics that worked on mycoplasmas, and that was tetracycline, the so-called mycin group. The group included, Aureomycin, Teramycin, Achromycin, Lincomycin, Erythromycin, Virbamycin and Clindamycin.” (Though he expressed concerns about Aureomycin as a longterm treatment).

Winston, hopefully someone here will be able to chime in with the doses they've found helped them, if they have taken erythromycin.

Have you considered tetracyline by any chance? I did really well on tetracycline in combination with biaxin in my first year. Mind you, that was in much higher doses for Lyme…nevertheless, I wonder if you might do better in the sun with tetra? Everyone seems to react differently.

All the best to you! Don't know about coastal Maine, but it's been a hot, sultry…but incredibly beautiful, sunny day here in CT today! After been drenched for weeks, this is bliss!

Had such a good hoot over your triple blind study remark! :roll-laugh:

Peace, Maz

 

[lynnie_sydney]

Winston – you might want to check this info out. 

[/color] http://www.emedexpert.com/compare/macrolides.shtml

I am on another derivative of eryhromycin, roxithromycin, which I take at 150mg twice a week (pulsing and low dose) but it is part of a combined regime that also includes doxy and cefaclor. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Rosemary Perth Aust.]

[user=313]fastspinW[/user] wrote:

Hi,

As I mentinoned a few weeks back I have been having a terrible time with leg cramps for several years. More and more I've come to suspect that Minocin is related to these cramps despite the medical establishment's statements to the contrary! A few months back I stopped the Minocin and with 2 weeks the leg cramps were all but gone. I then tried Doxycycline which didn't seem cause leg cramps but wound up sensitizing me so to the sun (I'm a boat captain) that despite layers of SPF 50 I got burned to a crisp.

Having gone back to Minocin I was sorry to see that within 10 days the leg cramps were back!

I know that Erthromycin is sometimes used by AP docs and I was wondering if it might be worth a try. Interestingly enough I used it for a year or so many years ago for a totally unrelated illness and while I was using it my RA went into remission. Sadly I didn't connect the two events at the time but when I discovered the AP program 5 years ago I told my doc that I had performed a

triple blind study on Erthromycin and it passed with flying colors.

“What,” he asked, “is a triple blind study?”

Well, I answered, I didn't know what I was testing, my doctor didn't know what I was testing, and nobody else knew what I was testing. Pretty much eliminates preconcieved notions don't ya think?”

He didn't laugh so I kept taking the Erythrmycin and got a new doctor.

Anyway, does anybody know what the starting dose of Erthromycin usually is?

All best,
Winston

Winston  – Have you tried Magnesium supplements because it stopped my cramps. We lose much of our magnesium with these problems so I would try that first. the only thing to watch is if you take to much you run to the loo but a minor problem it is only a mineral and sounds like it is needed. You do need to start on a little and build up to what you need.  no prescription needed.  Health food or pharmacy.

[fastspinW]

Maz,

Thanks for your input! I hadn't considered tetracycline as I've tended to think of it as the weak sister to Minocin. I have considered going to using Minocin on the pulse dose schedule as this might cut the dose down to the point where the leg cramps back off. Must say, however, that in the middle of my boating season the thought of a flare fills me with dread as being a boat captain doesn't leave much room in terms of incapacity…

To answer someone else's question, I am, thanks to you and others on this site, now aware of the connection between the tetracyclines and magnesium depletion and I am now taking mag supplements. I am in hopes that this might lessen the severity of the leg cramps that have been making my life a living hell this summer but I guess only time will tell.

Hard to say what I am going to do at this point and I would have to admit that I wouldn't mind one bit running into a doc like Dr. Brown! Wouldn't it be nice if instead of the dispensing of Medical True Belief there were docs out there who sat down on a treestump from time to time and actually gave some serious thought to a particular patient's situation.

I would have to say that after 39 years of chronic illness I am losing my sense of humor when it comes to folks like us having to be our own doctors! This is the third illness I've had to become expert in and when you add that to my boat captain job, my work as a photographer, my work as a bald eagle field researcher, my having to manage my type 1 diabetes, and my hypothyroidism, etc. even my brother gets heavy as heck. In fact the load becomes heavy enough that it doesn't leave much room for “living” a life.

I spent several hours watching a C-Span show on medical reform last night and at the end I turned to my wife and said, “This was all about modifying the medical delivery system in America with a given being that the medical care being delivered was of good quality. The Truth of the matter is that much of the medical care being delivered is terrible and no matter how efficient the delivery of it becomes people are still going to keep droping like flies.”

Had a medical school student aimed at becoming a medical researcher and his girlfriend on my boat Sunday and I spent quite a bit of time discussing these sorts of things with him. By the end of 3 hours it became clear to me that what we sick people really need is someone like him with medical curiousity combined with someone who actually is good at communicating with people. Not sure if that combo is possible or not but I wouldn't mind it one bit if I ran into someone who fits the bill.

All best,
Winston

[lynnie_sydney]

Winston – you know, they are out there, just not easy to find. But that's probably true of most professions (or indeed people). There are the incompetents, the just competents, the competents who stay inside the conventional box and the rare birds who are both competent and so comfortable in their own skins that they remain curious, recognise that answers sometimes come from surprising sources and are willing to keep learning and stay open. I have just discovered in the last few weeks that I have a Primary Care Doc (not my AP Doc) who falls into the last category. He is a specialist who went back into General Practice (not in it for the money obviously) who also genuinely cares about his patients. It's not unusual for him to spend an hour or more with you when you need the time. In the last few weeks, he has blown me away with his throughness and openness, his willingness to look outside the box for answers and to ask me what my gut is telling me.  Keep looking, don't give up and keep in touch with your medical student, he may well be a conduit. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[fastspinW]

Lynnie,

You lucky devil! In the past 39 years I've only run into a single doctor I had much respect for and he left the area after only 2 months. Most of my doctors have been the kind of people who hated me in college because I was always asking questions. How well I can recall them glaring at me because, “Now that you brought that up it might be on the test you jerk!”

My favorite memory of a well meaning but somewhat incompetent doc runs back to 1996. I'd been diagnosed with Ulcerative Colitis and had been unable to work for a year due to internal bleeding. Because of my diabetes many of the usual meds were off limits. Finally my gastroenterologist told me that the time had come to completely remove my large intestine and replace it with a colostomy bag. When I told him that I felt that was not the right thing to do he said, “Well Winston, you are the bald eagle expert and I'm the gastroenterologist so I'm guessing I am a bit more qualified to make this decesion. When I continued to resist he asked me if I'd be willing to seak a second opinion and I replied that I would.

When I went to visit the second gastroenterologist he began to lecture me and I said, Dr. ? we can do this one of two ways. You can talk at me for 10 minutes and I'll pretend to listen and then I'll tell you why I feel there is a better way to deal with this, or we can skip directly to my presentation.

Surprisingly the guy smiled and said, “By all means proceed.”

When I had finished showing him the data I'd put together, and had explained the treatment protocol I'd come up with, he said he had enjoyed meeting me and sent me on my way. A week later when I returned to the first doctor I asked him what the second doctor had had to say. The first doctor smiled and said, “Dr. ? said that I should become a bald eagle researcher and you should become a gastroenerologist.”

So we followed my self designed protocol and … drum roll please … several months later the ulcerative colitis vanished! Never to return.

A few years ago a The American Diabetes Association magazine Forecast published a cover story about me as a superactive Type 1 diabetic and for a year or so I was much in demand as a speaker. During the course of the various talks I gave to patients, nurse groups, etc. I came to discover that the real problem with medicine here in America is that the “For Profit” motive behind every aspect of medical care virtually guaranttees that patients will spend most of their time being patient and little of their time being well.

All this said, while I haven't yet completely given up all hope of finding a competent, caring physician I must admit that I am no longer holding my breath.

So count your lucky stars down there in Australia and if the opportunity presents itself send a couple of good docs our way.

All best,
Winston

[anno]

Amen to everything you said.

[Randy]

[user=313]fastspinW[/user] wrote:

I came to discover that the real problem with medicine here in America is that the “For Profit” motive behind every aspect of medical care

Hi Winston,

I need to add to my signature here what I have on my signature on the Scleroderma Family Site (Cubby's) and the Scleroderma Foundation Inspire site.

It reads,

“No one should profit from someone else's illness!”

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[fastspinW]

Randy,

With that statement I could not agree more. Now if we can only get the rest of the world to agree we shall be all set.

All best,
Winston

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