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[user=76]john h[/user] wrote:
Hello JamesP
this type of spasm seems to be an uncommon side effect. I don't know that I would agree with the doctor that all of this family of drugs is really tough on the stomach compared to other meds that doctors push at you.
I hate to see you give up on minocin, since it appears to be working for you. I am wondering if it would be possible for you to obtain 50mg capsules, and try maybe one a day, and see if you still get the same reaction. Maybe you could hold your ground this way until this condition improves. My daughter has a form of SD, and when she originally began, she took 100mg/2x daily. After about a month, she got some pretty nasty hives. We backed off to 100/day after a rest period of 2 weeks. She never had any more problems.
Also I have to wonder whether you have some kind of GI issue that is causing the RA symptoms, instead of the other way around.
Hang in there
John h RA
I've wondered the same thing but am really at a loss as to what that could mean or how I coudl proceed.
hello jamesp, have you been tested for h.pylori? just a thought, hope you find the solution soon. p.s. i had terrible reflux for several years, got tested, (+), got treated, and haven't had it since. (over a year ago) jims
Kim,
Can lyme be responsible for all the rheumatic diseases like MCTD too, or just straight RA?
Sharon
Sharon,
Yes, Lyme can mimic or cause any auto immune disease. Lyme was the trigger for my SD and RA, which I figured out after I had already started AP. Definitely worth testing for because it requires a much different abx protocol and a Lyme specialist (LLMD).
Take care….kim
[user=40]Kim[/user] wrote:
Sharon,
Yes, Lyme can mimic or cause any auto immune disease. Lyme was the trigger for my SD and RA, which I figured out after I had already started AP. Definitely worth testing for because it requires a much different abx protocol and a Lyme specialist (LLMD).
Take care….kim
Kim what drugs did you take in your protocol?
I'm still torn as to what I can try taking in lieu of the minocin as the problems it causes me makes it impossible for me to consider taking it for any length of time.
Hi James,
I too am unable to tolerate minocycline–either brand name Minocin, or generic, it doesn't seem to make any difference.
You might try clarithromycin. In 2006 my doctor started me on Clarithromycin, 500 mg twice a day (the brand name is Biaxin, but I've always just used the generic clarithromycin). At the time I could hardly walk and had to have help rising from a seated position. After being on the Clarithromycin for about 4 to 5 months I started to notice some improvement in my hips, knees and ankles. Little by little over the next two years I got better. Now I walk normally and have no trouble getting up and down stairs. I think there was some slight damage to my knees and ankles, as it is difficult for me to jog. Still, I'm light years ahead of where I was 3 years ago.
The clarithromycin has not been a panacea for me, however. I still have problems with my wrists and shoulders, and I'm afraid it has not slowed the progression of the disease in those areas as I would have liked. Still, I think it's definitely worth a try. If you do try it, make sure you take it right before a meal so as to avoid stomach irritation.
Take care,
Bobbi
James,
Have you tried eating some food immediately before taking the minocycline and then eating some more food immediately after you take it?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinJames,
You're not going to like having one more suggestion thrown at you, but so many of us have realized we have leaky gut and food sensitivities (like Celiac) that we never had before. In my case I have no idea whether the gut issues allowed the illness to take over or whether it was the other way around, but I tested pos for Celiac and am now gluten free, plus I learned at 58 years old that I'm allergic to dairy and eggs too. 😯 Who knew??? It's hard to test that on your own with food elimination challenges because so many foods have a delayed reaction, in that you might not have the adverse effect until several days later so you'd never know which one was the culprit. You can do the Enterolab stool test on your own for around $100 for Celiac and they also have a dairy test. The other food allergies would have to be done seperately. You will not get well without healing your gut, no getting around that.
You asked about Lyme abx and the list is quite extensive. You can do a search on the Burrascano Guidelines which maps out the basic treatment and abx typically used. I'm sure each LLMD has their own variation, but it's more or less the same drugs, a lot of them!
It is so discouraging that each one of us has to muddle through this crap ourselves, honestly, this should be Health 101 in med school. :headbang:
Good luck, James.
kim
James,
I also used Clarithomycin (biaxin) first before even trying minocin bc i thought i would have a lupus induced reaction to minocin. My RA dr told me that he and his other drs in his office have used it with sucess. i only used it for a month. Not because i had any reactions to it…but had decided to stop it and just give minocin a try after seeing the AP dr and reading The new arthritis breakthrough book……so i know it is used and used with sucess so give it a try.
[user=909]JamesP[/user] wrote:
I posted a while back on Dec 1st that I was having what I thought was major heartburn from taking Minocin 2/day.
Well it turns out it was not heartburn but esophageal spasms which I am taking 20mg of dicyclomine for. I've determined it's definitely the Minocin that is jacking me up and causing the spasms. I've been off Minocin for 2 months now and my hands are really starting to flare back up 🙁 I've tried taking the minocin with food and various other tactics but within minutes of taking it I feel like I have crushed glass going down into my gut.
I wanted to ask the board for suggestions on other medications I could try taking in lieu of the Minocin.
The GI I saw said Minocin and other tetracyclines are very hard on the stomach and is not surprised that it's been causing me issues.
I've gotten Clindy IVs once a month since Nov and these don't cause me any problems but getting an IV once a month is not having any noticable improvement. It seems I need to get them more regularly, like the 5 days straight I did a few months back, to have much effect.
Any suggestions on what I can try to get back on an AB protcol?
thank you! sometimes I don't know what I would do without the advice on this board.
Edit: Just gathered a few links to articles/web sites, and the first link with Articles on Dr. Galland's site appear to be newly there! Pasted at end. Exciting topics. Hope everyone will take a look. AF
James P,
It may be that the spasms are due to the condition of your gastro system, whether or not you take Minocin. I had esophageal spasm about 14 years ago, which developed while living in an apt. and building a home. Turned out that the heating system had heavy mold inside, that I later realized had been the culprit/trigger. At the time I had been recuperating from compromised gut lining problems after two years of illness and doing well; and then the mold apparently overwhelmed my immune system.
Were I in your shoes, (if you tolerate the milk product yogurt — I read that even people who are dairy intolerant, often tolerate yogurt and it is very healing), I'd begin eating a combination of the ingredients below — they helped to heal my gut system and had me looking like the picture of health — it was gradual but steady and definitely turned things around. I'd just had to have the stretching procedure of the esophagus in the hospital; but after that procedure, I had no more spasms, and I healed the gut lining with this combo below, and began low-dose Minocin just a few months later after procedure. Everything (for 7 years) began “coming up roses”:
[This formula originates from the work of famous German scientist, Johanna Budwig, and is a way for getting the Essential Fatty Acids into our cells and the EFA's can repair them (The yogurt or quark or cottage cheese is the “carrier” that gets the EFAs there. http://www.arthritistrust.org and find Articles Important, click and an alphabetical list will appear…. go down to “Essential Fatty Acids Are Essential”; Dr. Budwig's work is either on page 3 or 4 of the article. Also, information is on Cure Zone about her work.]
For a year or more, I ate this twice a day. I continue to eat it most days for breakfast or for lunch.
1/2 cup Brown Cow Cream at the Top PLAIN yogurt
(If you are thin, stir the cream into the yogurt. If normal weight or overweight, gently cut into pie-like slices, and lift the top cream off; then stir well.1 Tablespoon of Flora brand flaxseed oil
(or 1 T. for every 100 lbs of body weight)*Ground Flaxseed
(Do not use more than 3 tablespoons a day, and drink plenty of pure water.)
(A coffee grinder is cheap, and enough flaxseeds for a week can be ground and put in a glass or plastic jar and refrigerated. This is an excellent fiber, and can help trap and usher “acidic wastes” out of the body; otherwise fat-soluble organisms/toxins can be reabsorbed back into the body from the bowel.)Probiotics
(I used the refrigerated Solaray Powdered Multidophilus, and stirred it into the combo — Per one of my AP physicians: 3 to 4 times the dose on the bottle)Stevia
1 tiny scoop
(A healthy plant sweetener, excellent taste with Kal brand powdered one. Looks expensive at $9.00 for small bottle of Kal brand, but tiny scoop is all needed, and lasts for ages — tried other Stevias and I did not like taste of. Have learned this is one of the safest sweeteners and is alkaline, not acidic, and the body is already very acidic with chronic illness, and sugar and other sweeteners are no-no's.)*Optional: 1/2 cup chopped apple or fresh peach; blueberries, fresh or frozen; etc.
[Cancer patients are told to double the amounts they normal would take.]
Also, I'm afraid I'll lose my post here, but I'll return and put one of my favorite links to Dr. Leo Galland who has excellent papers for the gastro system and such as you and I experienced with the spasms.
Good luck to you. (And by the way, when we first begin AP, our body parts can be in such a fragile condition that we can blame everything on AP/Minocin, and in reality it can be our poor bodies in the condition we are in, can be reacting in a Herxheimer way. I wouldn't give up on Minocin just yet, though you may want to take more time to heal the gut…. and possibly retry very low dose at a time in the future.AF
http://mdheal.org/articles.htm
Dr. Leo Galland site
This Articles list looks very, very important!!! Had not seen it before, and must spend some time there.
Also, couldn't help noticing that Dr. Galland has an article on Magnesium Deficiency in the Pathogenesis of Mitral Valve Prolapse.
http://www.ei-resource.org/articles/candida-and-gut-dysbiosis-articles/intestinal-parasites,-bacterial-dysbiosis-and-leaky-gut/
Dr. Leo Galland
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20030119/tetracycline030119/20030119/
[/size]James,
Have you found an alternative to minocin yet? I had a reaction to minocin and can't take it either. I traveled to Tennessee to see Dr. S in hopes that he could help me. He put me on a flagyl/alinia rotation (2 weeks each MWF) and zithromax every day, every other week. I herxed terribly with the flagyl and now just take Alinia. I'm not getting the results I got from minocin, but I'm slowly getting better. The zith really helps too.
We exchanged emails several months ago. I live in the Austin area too.
Patty
[user=233]pattyrod[/user] wrote:
James,
Have you found an alternative to minocin yet? I had a reaction to minocin and can't take it either. I traveled to Tennessee to see Dr. S in hopes that he could help me. He put me on a flagyl/alinia rotation (2 weeks each MWF) and zithromax every day, every other week. I herxed terribly with the flagyl and now just take Alinia. I'm not getting the results I got from minocin, but I'm slowly getting better. The zith really helps too.
We exchanged emails several months ago. I live in the Austin area too.
Patty
Hi Patty,
I just got back from vacation and am trying to get caught up at work sorry for the late response. Unfortunately no I have not tried an alternative to Minocin. Based on what I've read and suggestions I think I am going to try Biaxin. I just know that my AP doc will probably be very resistant to it since he was skeptical to put me on Minocin anyway.
I need to sign up and get tested as Kim suggested for Lyme. Sorry I could not be of more help.
Just thought I would let you know that I am on AP but as you can see from my signature line am not taking mino (same with Lynnie but she is on different abx from me) — there are quite a few alternatives.
Maz-Aust
ps – it's not uncommon although unusual to get that kind of response to mino, my friend had the same response with mino & is also looking for an alternative.Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
[user=492]maz.aust[/user] wrote:
Just thought I would let you know that I am on AP but as you can see from my signature line am not taking mino (same with Lynnie but she is on different abx from me) — there are quite a few alternatives.
Maz-Aust
ps – it's not uncommon although unusual to get that kind of response to mino, my friend had the same response with mino & is also looking for an alternative.Maz.aust do you have a link by chance with info on your protocol? Did your doc recommend it or did you find out about it online?
thank you
[user=909]JamesP[/user] wrote:
Maz.aust do you have a link by chance with info on your protocol? Did your doc recommend it or did you find out about it online?
thank you
I am assuming you are asking about the abx I take ??
My AP Dr recommended it — there are a variety of combination abx she uses depending on the patient's needs & they compliment each other in effectivness working together in her opinion to make it more effective. Although I have always had rulide & amoxil syrup prescribed we have changed the other 2 as needed.
I don't have a link to my protocol but can PM you with how it went if you want to have a look?
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
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