Antibiotics for RA?

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Bloody Red Baron
New Member


Date Joined Jul 2016
Total Posts : 3
   Posted 7/15/2016 4:10 PM (GMT -7)   
I have been reading studies that say RA patients have a bacteria that normal people don't have. There is a doctor in my area who has been practicing for 30 years treating RA patients with antibiotics and he has a large following with people all over the country coming to see him. Does anyone have anyone have any information about this treatment?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/15/2016 7:28 PM (GMT -7)   
I'm not familiar with that kind of treatment.

But I just had to say welcome to Snoopy's arch rival. 😆
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Eastcoastgirl
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Date Joined Aug 2014
Total Posts : 8
   Posted 7/16/2016 6:18 PM (GMT -7)   
Yes I am seeing a similar doctor. A good book to read about treating RA with antibiotics is "The New Arthritis Breakthrough" by Henry Scammel.

Post Edited (Eastcoastgirl) : 7/16/2016 7:42:12 PM (GMT-6)


msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 7/17/2016 3:14 AM (GMT -7)   
Yes, a lady from my city whom I met on the net has been on that treatment for about 2 1/2 yrs. She suggested that I buy the book mentioned by Eastcoastgirl which I did. Interesting testimomials. The lady in my city which I mentioned was not in remission the last time I talked to her but she was feeling better. She had tapered off one of her other meds. I haven't spoken to her in quite a while...perhaps I will again soon, to see how she is doing.

The antibiotic is Minocin and other meds are used with it. I think, dairy products, gluton and sugars need to be removed from the diet also.

My Rheumy was happy to prescribe it for me when I mentioned it to him last year since nothing else had been working for me for the last ten years except for Prednisone, much to his disappointment. After thinking about it, reading the book and some of the site info(http://www.roadback.org/), I declined. I think it was because of the long time it took to feel relief by some and the idea and pain of herxing freaked me out. Not sure but it may be possible to die during the herxing experience. If so, probably rare. If I have those bacteria in me, I prefer them alive and happy unless I find out for sure that nothing else works for me.

I would think that this info would be on the Lyme Disease Forum here. I think that I read on the site also that just for the antibiotic it costs over $1,000. in the USA in comparison to cheap in the UK and Canada. That is disgusting and outrageous!

How are you doing on the treatment Eastcoastgirl, or are you are on it yet?? Could you correct me if needed and tell us more about it?
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC

Post Edited (msOuchie) : 7/17/2016 5:47:52 AM (GMT-6)


Bloody Red Baron
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Date Joined Jul 2016
Total Posts : 3
   Posted 7/18/2016 4:09 PM (GMT -7)   
I just looked up herxing. Yes, this doctor's site says that you do get worse before you get better after starting the antibiotics. I've also read that this treatment works best for those who were just diagnosed because there is a short window of time to get the RA before it destroys your joints. The good thing about this treatment is that you don't get immune to the antibiotics like you do the biologics. And you don't have to take them forever. It just sounds too good to be true.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 7/19/2016 8:59 PM (GMT -7)   
I was on this treatment regimen back in 98 or so and I had to stop it after about 6 months due to my stomach not being able to handle the antibiotics. I grew progressively worse and so sick that I started taking Enbrel when it was just on the market.

I know that people have had good results using this treatment however and I wish I could have continued to take it. It just wasn't possible unfortunately.

bdavis
Regular Member


Date Joined May 2016
Total Posts : 180
   Posted 7/30/2016 10:06 PM (GMT -7)   
Don't stop treating for underlying infection just because the drugs make you sick. There are all sorts of herbs that work well and don't have the side effects of drug antibiotics.

In addition to Lyme, mycoplasma is another bacteria that can cause RA. Killing off this bacteria (if present) can put your RA in remission.

Standard RA drugs just try to hide symptoms and blunt the immune system, and if your immune system is trying to fight a stealth infection you don't know you have, you will never get better this way. Find out what underlying chronic infections you have and GET RID OF THEM.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9657
   Posted 7/31/2016 10:00 PM (GMT -7)   
bdavis, antibotics can work wonders for some people, but not all. The antibotics that work best is an erythromycin class and some people like me are highly allergic to it, anaphlaxsis shock type allergy if I take this antibotic ever...it can also tear up the stomach and the stomach meds might be needed and then you have to weigh the pros and cons becase stomach meds can bring on side effects too...
The other class of antibotics that could help is sulfa antibotics and these can cause extreme water loss, excessive dryness, ect...and this dryness could bring on disease like sjogrens or make sjogrens worse.
For a normal person whom only has ra then I would say ask your doctor about antibotic treatment first but if those fail, and not due to lack of trying them, then I would say they need stronger meds like mtx, pred and other dmards might be needed...while no one wants or wishes to be on these stronger meds, its what might be best for them when all else has failed, many of us on here have failed the natural, and antibotic therapies...but its good for newbies to know, please don't push it though if someone says it doesn't help them, but be ever gracious and compassionate to everyone, please, you'd want that too...
Just a hint capitols makes it looks like your yelling, please just a gentle reminder to not yell, please.
Thank you...
Nice to meet you and hope your doing well...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

MarleneF
New Member


Date Joined Jul 2016
Total Posts : 12
   Posted 8/1/2016 10:10 AM (GMT -7)   
I have a friend who was on Minocycline for several years, in combo with mthx and a biologic (I forget which one.) She was in total remission, and got her life back.

Then her rheumatologist thought she had been on the Minocycline too long, and had her go off. She went into total failure, and was a mess. So her rheumatologist had her go back on it, but it never worked again. She had to totally switch up her regime.

I was on Sulfasalazine with Kineret for 8 months. It was not as good as Kineret with mthx, but my liver could no longer handle the mthx. At about 6 months, I started having an allergic reaction mid morning, if I didn't take Benadryl. It took several months to figure out that it was the enteric coated, 2 hour delayed onset Sulfasalazine that I had become allergic to - along with all the aspirin based DMARDS. And aspirin. Six years later I can take aspirin based drugs. So last year during a med failure, I got out the Sulfasalazine to see if it didn't bother me any more. After 3 doses, I had the worst case of hives and allergic reaction you could imagine. Much worse than when I went off of it, 5 years earlier. I don't know if it was aspirin or the antibiotic - Sulfa - drug part that I was allergic to - or both!

I agree that if these drugs work for you, that is great. I did try minocycline with mthx at a very bad time in my RA, and after 6 months, there was no change at all in the severity of the disease.

As for whoever said the biologics just cover up symptoms, that is totally wrong. The DMARDS and biologics actually target the disease, by killing off various parts of the immune system. Mthx is a TNF blocker, Rituxan kills B cells, Orencia kills T cells, Actemra- Interleukin6, Kineret - Interleukin1, etc, etc.

What covers up symptoms are pain killers and prednisone. Those are the drugs to avoid. Except if nothing else is working, I will take them. I went from being totally bedridden, unable to walk, dress of feed myself, to being able to at least hobble around and perform a few household tasks. That was on 15 mg of prednisone daily. I don't like prednisone, but I like RA flares even worse. So sometimes, we have to bite the bullet and take prednisone.

I am still on it on Arava/Orencia/prednisone. I am switching back to mthx from Arava and hopefully it won't affect my liver.

Of course, all these drugs, including the antibiotic ones, which can put you in remission, are not "cures." I have heard that there is some kind of blood therapy trials in Australia, which actually "cure" you. That is what I am waiting for! A cure would be the best option of all!
"More than that, we rejoice in our suffering, knowing that suffering produces endurance, endurance produces character and character produces hope. And hope does not disappoint, because God's love has been poured out through the Holy Spirit who has been given to us." Romans 5:3-5

CA-Lynn
Regular Member


Date Joined Jul 2016
Total Posts : 24
   Posted 8/1/2016 10:40 AM (GMT -7)   
As I recall, the antibiotic treatment has been around for quite a while. I don't have the time now to collect the links to references, but if memory serves, they found that in SOME cases the antibiotics work if used very, very, early in the disease [initial onset]. I personally think that since RA waxes and wanes, some might attribute the antibiotic as having reduced the RA symptoms.....when in fact the inflammation just subsided during one of the "waning" periods.

Some of us who are genetically predisposed to RA and PsA often presented with initial symptoms right after an infection of some sort. In the case of my brother and myself, we both had a strep infection at the same time.....and each of us, within 6 months, was independently diagnosed with RA. Both of us are sero-negative RA and we both have PsA as well. Both of us were given antibiotics for the strep infection. However, here we are...full blown autoimmune disease.

bdavis
Regular Member


Date Joined May 2016
Total Posts : 180
   Posted 8/1/2016 7:58 PM (GMT -7)   
I never stated that all cases of RA are caused by infection. However it is my personal belief that most are, and that treating for autoimmunity without first attempting to ferret out all possible infectious causes is negligent.

I was told there was nothing I could do about my RA, but to suppress my immune system. I have such a severe case that at times I would see 90 year olds shuffling down the road and be envious of their physical condition. After much searching and blood tests, I believe the root causes of my RA are chronic infections.

I used capitals to infer shouting on purpose, because I think this is so important and would like to help people who may not realize there is a good chance they can cure their autoimmune disease and get their lives back. I think everyone with an autoimmune disease aught to get tested for Lyme, its coinfections (specifically mycoplasma which is often found in RA), viruses, etc. I really think that most of these "autoimmune" disorders are really just the immune system trying to kill infection(s) that it simply can't beat. Sometimes it just needs help. And that doesn't mean just throw a random antibiotic at it and then give up if it doesn't work. Figure out exactly what you have and target it specifically with the substances that are known to work for it. If the immune system isn't functioning properly, try to figure out why.

Again, won't work for everyone, but please look into it.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 8/1/2016 11:07 PM (GMT -7)   
It certainly is worth looking into I agree. Anyone with RA is facing a lifetime of chronic illness and eventual disability which if it can be avoided obviously all of us would agree that it should at all costs. My hope is that someone newly diagnosed or in their first 10 years with RA would talk with their Doctor about it and with their agreement work it into their treatment plan. Sensibly and not with an all or nothing mindset. Mine did it.

What I think many of us with decades of RA behind us see and have experienced a lot of is people who make broad sweeping generalities about RA cures that many people newly diagnosed have not been exposed to. I have read many books about how RA can be cured and all it takes is the right antibiotic, diet, yoga, acupuncture etc etc etc... The kicker with this is that if it doesn't work then YOU are doing something wrong or not following the (insert treatment here) well enough. Placing blame on the patient for the illness.

Personally, I believe that many people diagnosed with RA are miss-diagnosed. RA has been a catch all diagnosis for a long time when Doctors can not find a verifiable clinical diagnosis. It just seems to be the norm. Partly I think because immune disease is such an incredibly complex illness. I have a hard time believing that someone who can make 3-6 months worth of dietary changes (or insert popular treatment of the month here) and "cure" their disease ever really had it to begin with.

These same people of course want to tell the world about their new found health but in the process they can make assumptions and sometimes accusations about the disease and treatment regimes that are in some cases ignorant and others just plain cruel. I have witnessed this several times over the years online and it is one of the reasons I keep coming back to this board. People here get it and do not treat others this way.

Also, these treatments that many want to decry as "poison" give many people their lives back or at least enough of one to be productive and happy for many years. My father had RA and he was disabled by the time he was in his early 30's. I have led a productive and for the most part disability free life until the last 3 years or so. I am in my late 40's. I credit this to the all these new medications which gave me almost two decades of my life back. Anecdotal I know but my experience none the less.

It is not that the message isn't a good one, it's the delivery many use that I disagree with. It serves no-one to make grandiose claims one way or the other about a disease like RA and its treatment because there is no sure fire cure. Period.

Another thing that is never addressed is the peer reviewed verifiable studies showing the effectiveness of these treatments. I read a lot of claims in the book written regarding this treatment that I then asked my Rheumy about. She had read it and said that it was a consideration but that there simply was not enough proof either way to get the attention of the medical community one way or the other. She told me that it was talked about at conventions and that many Doctors were hopeful that more deciding studies would be reviewed and published. This was 20 years ago.

Also, what about the people who test negative for these bacterial strains like myself yet have classic RA that does not treat favorably using these regimen?

Again no one size fits all approach to RA but I think with a reasoned and sensible approach that many of these claims are worth investigating and I know from my experience that my Doctors have all been open to them. After all, they are Doctors and want to see us and our suffering eased.

CA-Lynn
Regular Member


Date Joined Jul 2016
Total Posts : 24
   Posted 8/3/2016 1:53 PM (GMT -7)   
The author [not an MD] writes all sorts of "cure" books.

The arthritis breakthrough book is nearly 20 years old.

The title itself, "The New Arthritis Breakthrough: The Only Medical Therapy Clinically Proven to Produce Long-term Improvement and Remission of RA, Lupus, Juvenile RS, ... & Other " - where's the proof? If it was there don't you think we'd all be on antibiotics?

Beware.

https://www.amazon.com/Henry-Scammell/e/B000APNENK/ref=dp_byline_cont_book_1
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