Re: Antibiotic Therapy, JB Greenly, Deano

[Guest guest]

> ... I was glad to hear that it is recommended to continue

> NSAIDS while one is on the antibiotic therapy and that the

> antibiotics can actually slow the progression of this disease

> quite rapidly. Is it acceptable to take sulfasalazine along

> with the antibiotics and NSAIDS simultaneously? I would

> appreciate hearing from anyone who has tried the antibiotic

> therapy and sulfasalazine at the same time.

>

> I have an appointment with my rheumatologist this Monday and

> will discuss this combination with her. In the past she has

> not been very optimistic about alternative treatments so I'm

> curious to see her reaction.

>

> Thanks, Joe Godfrey

Joe,

I've been on sulfasalazine for about 15 years in combination

with just about any NSAID you could probably mention, and

started antibiotics about three months ago. An orthopedic

surgeon started me on Feldene after my second knee surgery in

1989, and when I later started complaining about pain in my

fingers to my Dermatologist, he sent me to a Rheumatologist. The

Rheumatologist recommended sulfasalazine because he thought it

was pretty safe and if I remember correctly he thought it might

also help my Psoriasis. He also prescribed a different NSAID (I

forget which one, Naprosyn I think) and later kept switching me

around to different ones to try to find one that worked best

(Plaquenil was a total disaster, it made me break out in

Psoriasis all over my body), but I kept taking sulfasalazine the

whole time. He tried to get me to up the dose of sulfasalazine

to 2000 mg a day, but it caused such a loud ringing in my ears

that I told him I couldn't tolerate it. We finally settled on

1500 mg of sulfasalazine, 1500 mg of Relafen, and a couple 200

mcg cytotec pills each day. About three years ago my

Rheumatologist had two heart attacks in succession and quit his

practice. I just had my regular GP (internist) prescribe the

arthritis pills for the next year or so until I had a severe

flare in what I thought was my left hip and he didn't know what

to do. That was when I started going to a new Rheumatologist.

She gave me a shot of cortisone in my hip and went on a month's

vacation. Uncharacteristically, the cortisone shot didn't help

at all. I spent the following month in and out of an orthopedic

surgeon's office who prescribed physical therapy (Ouch!), and

took Xrays of my back and an MRI of my hip. He finally decided

it was a back problem (L5-S1 Spondylitis with radiculopathy and

spinal stenosis) and recommended surgery. After being in

excruciating pain for a month, my Rheumy finally returned from

vacation and I explained what had happened. She said it was most

likely my sacroiliac joint, and that was where she had tried to

inject the cortisone but that it is a difficult joint to reach

with a needle and that she had probably missed. She also said

that surgeons never suspect the sacroiliac joint because it's

not something they're typically taught to operate on. There's an

interesting historical story about why the sacroiliac joint

often escapes evaluation at:

http://www.sacroiliac.com/new_page_6.htm

Anyhow, she put me on oral Predisone and two days later I was

pain free and feeling fine, and haven't been bothered with it

since.

About that time, I also finally agreed to start Methotrexate.

Every rheumatologist I've ever gone to wanted to put me on

Methotrexate, but I had resisted because of the possible liver

damage (and because I'd have to become a tee-totler as far as

alcohol is concerned), but that last flare was enough to

convince me that I needed something stronger than NSAIDS. My new

Rheumy also tried to get me to increase the sulfasalazine to

2000 mg with the same results (loud ringing in my ears) and she

switched me to Naprosyn - I'm still not sure why, as the Relafen

seemed to work just as well. So anyhow, I was then on the 1500

mg of sulfasalazine, with 1500 mg of Naprosyn, and a couple 200

mcg cytotec pills each day, and 10 mg of Methotrexate each week

for the next six months. What did all that have to do with your

question? Well, absolutely nothing at all - I just felt like

rambling! ;-)

To (finally) get to the point - back in May of this year,

Greenly's posts finally began to penetrate into my

consciousness, and I decided to look into antibiotic therapy. I

generally relegate unconventional therapies to the realm of

quackery, or at the very least give them no more consideration

than I would the remedies in the " It Works for Me " column of the

National Psoriasis Foundation's (NPF) monthly bulletin, in which

readers write in with their favorite, and usually very unique,

remedies for Psoriasis. But I read some of the material on

antibiotic therapy for rheumatic diseases, and bought Henry

Scammell's book " The New Arthritis Breakthrough. " That book is

the only one I have read in many years that brought tears to my

eyes. It kept using the word " cure " , which is the one word we

never, ever hear in relation to our disease - though in all

fairness, the book made it quite clear that antibiotic treatment

was in most cases very slow acting (except for intravenous

Clindamycin) and very long term, sometimes lifelong, and was

primarily about rheumatoid arthritis and other rheumatic

diseases other than psoriatic arthritis. One of the final

chapters even discusses the other more conventional view that

antibiotics are beneficial only because of their

anti-inflammatory properties.

I mailed my rheumatologist copies of the material I had on the

therapy prior to my next appointment with her, and even

purchased an extra copy of the book to present her with. The

reason I decided to try antibiotics is that it is the *only*

therapy that offers even the slightest hope of actually curing

our disease, and even if that's a false hope at the very least

it acts as an effective anti-inflammatory that's far safer than

anything else we take. Those are the arguments I presented my

rheumatologist with. She agreed that minocycline is one of the

safest drugs there is, and even grudgingly admitted that it does

have anti-inflammatory properties, though for different reasons

than those claimed in Scammell's book. Those are the points I

think you should make with your own rheumatologist; ie, 1. It's

safe, and 2. It does have anti-inflammatory properties, whatever

the reason.

Basically the only change to my treatment was that I stopped

taking Methotrexate and started taking minocycline. I continued

with the 1500 mg of sulfasalazine, 1500 mg of Naprosyn, and two

200 mcg cytotec pills. At my next visit two months later, I said

that I'd like to cut back on the sulfasalazine to 1000 mg per

day simply because even the 1500 mg/day dose had always caused a

slight ringing in my ears that was irritating, and that I'd like

to cut back on the Naprosyn because I didn't feel I needed that

much (1500 mg). She Ok'd the reduction in sulfasalazine on the

condition that if I started getting worse I would go back to my

regular dosage, and said that I could take the Naprosyn as

needed (ie; only when I was in pain).

I already knew that sulfa drugs had been used for their

antibiotic properties long before penicillin, tetracycline,

etc., ever came along, and she told me that sulfasalazine (a

sulfur based drug) also has antibiotic properties. I thought it

was interesting that she would choose that particular visit to

mention it (ie; after I had asked for a prescription of the

antibiotic minocycline for use as an anti-inflammatory),

particularly since no other rheumatologist I'd ever gone to

before had said anything about sulfasalazine being an

antibiotic. I think perhaps it signaled a change in her

attitude.

Nowadays, I take 1000 mg of sulfasalazine each day, and usually

500 mg of Naprosyn in the morning along with a cytotec, and 100

mg of minocycline Monday, Wednesday, and Friday. So far, I'm

feeling as well as I ever have. Feel free to contact me either

privately or on this forum if you have any other questions.

Good luck, and I hope it works for you.

-- Ron

[Guest guest]

> Dean, what type of test do you get to determine the kind of mycoplasm

> which may have invaded your body? Please elaborate. Also, I recently

> started a new diet which eliminates red meat, dairy, sugar (refined),

> wheat products and plants within the nightshade family. I know that

> you have had a lot of success with your diet and would appreciate

> your input.

>

> Thanks, Joe Godfrey

Hi Joe. I'll apologize up front as this will be a very long post.

My understanding is that it can be very difficult to get a reading on

mycoplasma and mycoplasma strain due to their need for specialized cultures

and testing. They don't grow well in normal testing situations. However,

I've read that effective tests are being used..one using DNA-fluorochrome

staining. Here is one testing lab that specializes in mycoplasma screening

and what they have to say about it: http://www.bionique.com/general.htm.

There are other labs out there that specialize in mycoplasma testing as

well. While I don't know the exact name of the test, your doctor will. My

understanding is that they will test for the 4 main strains of pathogenic

mycoplasma and report back to your doctor on whether they show up. The key

thing to note is that while some doctors will prescribe specialized

antibiotics for certain strains, the strains that are known to cause

arthritic conditions are all susceptible to the tetracycline family (with

mino and doxy being the most widely used). Those of us who have multiple

diagnoses and those with lupus will want to make sure they take the test up

front to determine a specific strain or strains as other disease families

have shown better results on other antibiotics.

Here is a great link to find out more info on mycoplasma and what they are.

http://www.mercola.com/2001/jul/14/mycoplasmas.htm

While I've done a ton of research on antibiotic treatments all over the net,

I still find Dr. Mercola's site to be a great information resource on just

about anything. He talks about things in great detail and in layman's terms

so you can understand it. To get an understanding of how he developed his

own protocol go here:

http://www.mercola.com/article/misc/Rheumatoid Arthritis.htm.

I'm glad you've decided to try the diet out. If nothing else, keep on that

and I'm almost positive you'll notice improvements. Some additional notes:

It's very important to eliminate sodas and carbonated beverages and add a

lot more water. Water to us is like oil to the Tin Man in The Wizard of

Oz...it lubricates our joints and does a nice job of transporting toxins out

of the body. Like you, I've eliminated a lot of dairy, but I upped the

yogurt to provide good flora for my stomach while I'm on the antibiotics.

You may want to test beyond the nightshade family and eventually include all

underground vegetables and corn (not give them up forever, but test them to

see if your body reacts to them). After a month on the diet I was at a point

where I felt good so that I could start testing out certain foods to see if

my body reacted to them. I soon found out that corn and tomatoes made me

flare up. They also make a lot of people flare up too due to food

sensitivities in our bodies. You'll soon find what foods you can tolerate

and those that you can't.

One of the main things that I think really helped me was simply cooking my

own food. I had fallen into the trap of buying out food at a deli or

restaurant because I was too busy. Unfortunately, restaurants use a lot of

ingredients like MSG that can make food sensitive folks flare up. Now I cook

90% of my own meals and use the " whole foods " theory when I eat out. The

more simple it is, the safer it is.

At first, the whole diet thing was a huge monster to me. I didn't want to

give up all those things I loved. But like all things it gets easy once you

establish a pattern. You'll also soon find great substitutes like rice

pastas and gluten-free breads that will allow you to eat the way you are

used to eating and not have food flares. And heck, if you end up feeling

great, who really needs that piece of cheesecake, right?

As a side bar (or file it under " If you think antibiotics are hoohaa, wait

till you hear this " hehe)...after reading through Dr. Mercola's information,

I have contacted a physical therapist locally who is knowledgeable in

Neurostructural Therapy (NST). This therapy realigns the immune system to

better fight the mycoplasma that invade our body. If I've read his site

properly, Dr. Mercola is actually weaning people off antibiotics in favor of

NST and a special diet.

My local practitioner is taking the advanced NST course over Labor Day and

I'll be meeting with her to talk about it further detail after that time. If

anyone is interested, I can post what I learn.

I hope that helps! Have a great weekend.

deano

[Guest guest]

I quit the sulfa when i started antibiotics.