Discussion in 'Fibromyalgia Main Forum' started by gglohope, Oct 13, 2006.
Has anyone tried the minocycline antibiotic protocol by Dr. T.Brown for fibromyalgia remission?
I tried it for about 9 months.
It seemed to help a little but I ended up with so many gut problems that I had to back off the protocol.
Nobody told me that long term use of antibiotics would kill the 'good' gutt bacteria .
You NEED to take a good probiotic when your on antibiotics for anything~
They keep a balance in your intestines.
Hope this helps
I suggest you search out the Marshall Protocol and think about it. You will find many people with fm/cfs in the Success stories that aredoing great.
Many from this board that have left are posting there.
It is a low dose pules antibiotics but you should still take a probiotic. I feel sorry for Tandy...thats a shame she was not told of this.
P.S. I should have mentioned that Minocyclene is one of the main conerstone antibiotics of the Marshall Protocol.[This Message was Edited on 10/14/2006]
For mycoplasma infections. I took Doxycycline for 2 1/2 years, pulsing them after about six months. Long-term use of ABX can cause problems, so it's better if one knows for sure one has a bacterial infection before taking the ABX. It was a mycoplasma infection which triggered my illnesses, FMS and CFIDS. Some here also have Lyme, which rquires long-term ABX treatment.
Some have viral infections and the ABX do no good against them. Antiviral meds work for them. I also had chronic viral reactivation and had to take AV's.
Both these meds were done empirically, which is OK but if someone is on these meds with no change in symptoms, I don't think they should be continued without testing. JMHO.
I understand the importance of getting a mycoplasma test for a bacterial infection before starting treatment; however, I don't know the correct name of the test. What is your abbreviations ABX and AV? I think I know but don't want to second guess.
Stand for antibiotic and antivrial. Sorry, we use a lot of abbreviations here and it can be like reading a bowl of alphabet soup until one gets used to it
Go to Dr. Garth Nicolson's website, Immed, and you can read about the tests for it. It is a PCR DNA test, is expensive, and the blood must be very carefully handled. False neg. results are not unusual. The test may have to be repeated. It is OK to try the ABX empirically, but if a patient does not respond, he or she should not be kept on the med long term without the tests. I am not a medical professional and this is just my own opinion.
Post to Victoria here and ask her about testing for Lyme disease. It is not unusual for someone with Lyme to be misdiagnosed with CFIDS.
Typically, if one has a bacterial or viral infection and takes a med for it, there will be a reaction. Either the patient will feel much worse, have a Herxheimer effect, with profuse and foul diarrhea, and then feel better; or, the patient will just start to feel better. This is usually justification to continue the meds.
Discussing this with one's doc will help to clear up just where he or she stands. It is helpful to print out the info you find online and highlight the specifics to save the doc time. Good luck.
Are you still using the protocol? Did you get any discoloration of your teeth? I also read where you can get blotchy skin from it. Do you have fibromyalgia or RA?
How do you feel at this moment?
P.S. Thanks for all your time.
No, I had no side effects from the Doxy. I have both FMS and CFIDS, which were triggered full blown by a mycoplasma infection. I only take the Doxy when I get run down or sick and start running a fever. That is a sign that the mycoplasmas might be trying to reactivate. The mycoplasma cysts deep in the body's tissue really never completely go away.
Right now, I am having what has felt like a gallbladder attach and I have an elevated liver enzyme. My stomach was inflamed and I had some healing lesions when my endoscopy was done. The doc thinks it's acid reflux. I'm having a nuclear scan of the gb on Tues. because it still could be a sick gb which is causing the acid reflux. I just hope they find out what is causing all this.
Other than that, I've made pretty stead progress over the last five year. Thanks for asking. Are you considering antibiotic therapy?
I was considering it but my husband isn't happy about the idea. Today I showed him some of the materials relating to the subject. So I'm putting the idea on hold.
Not totally dismissing it!
I just hope they have a cure someday -- me and several million other people.
I send warm and caring wishes to you None of us need more pain. Best wishes on the gall bladder situation.
I have been taking Minocycline since May 1, 2006 per Dr. Brown's protocol. I have noted a number of positive benefits in my case. Over the summer, I had a substantial improvement in my CFIDS/FM symptoms.
After 6 WEEKS: Slowed Achiphex to every other day. I have a very long standing history of GERD, ulcers, and gastritis. I have had a Nissen Fundoplication which is surgery to tighten up the esophagus and stomach valve. In the past 25 years, this is the ONLY time I have been able to go without Tums, Nexium, Prilosec, Prevacid, etc.
After 8 WEEKS: Stopped Achiphex completely – I NEVER HAVE REFLUX
After 10 WEEKS: TMJ – gone! I rarely have morning headaches or any kind of headache. I'm losing my ability to forecast the weather. In March, I overhauled my diet completely. I've had only 2 migraines. I had been using a box of Imitrex a week so this is a miracle!
After 12 WEEKS: Noticed I did NOT have asthma symptoms (chest tightening & wheezing -- was only short of breath after exposure to chlorine, cigarette smoke and petrochemicals. I have been inhaler free (stopped using Albuterol, Flovent & Flonase) since mid August.
I've been going to the Detroit FFC and the doctor there has repeatedly questioned my use of minocycline. I do have documented problems with candida, EBV & Cpn. I can't say for sure if the ABX therapy is responsible for all of these positive changes.
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