Fw: Emailing: USING ANTIBIOTICS FOR THE TREATMENT OF RHEUMATIC DISEASES - ROAD BACK FOUNDATION

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Dearest Friends:

The pain in my leg is very bad again, and I wonder if I have Infective Arthritis, because the pain is in both legs and in my back. My rheumatologist will be sending me to an orthopedic surgeon soon, and he/she will order an MRI on my back. I know that my knee is in bad shape, and the Ganglion on the bone in the back of my knee is pressing on a nerve causing this pain. I wish that I could take the Percocet, but it makes me sick. It is only a bandaid, and I want a cure...this is what we all want.

Kathy, I remember that you did some research on this, and I would love to have your opinion. I will print this article off and take it to the doctors on Saturday.

Thank you all...sending love always........Lea

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Emailing: USING ANTIBIOTICS FOR THE TREATMENT OF RHEUMATIC DISEASES - ROAD BACK FOUNDATION

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Education / Brochure Sheets / Using Antibiotics For The Treatment Of OR...

Using Antibiotics for the Treatment of Rheumatic Diseases

1. What is antibiotic therapy for rheumatoid arthritis and how does it differ from traditional treatments?

Antibiotic therapy utilizes low dose antibiotics, particularly those of the tetracycline family, to attack the disease at its source. This therapy is based on the theory that rheumatic disease is caused by an elusive organism such as mycoplasma, similar in some ways to both a virus and bacterium, but much smaller. The antibiotic can generally be taken in a low dose for months, years, or even a lifetime in some cases, without building up a tolerance to the drug and without the serious side-effects often seen with conventional medications.

Conventional therapy uses medications aimed at controlling or suppressing the symptoms. These medications can lose their effectiveness or cause other issues to arise, and patients sometimes find themselves worse than before they started the medication.

2. Does this approach only work for rheumatoid arthritis?

No. Lupus, scleroderma and other rheumatic patients using antibiotic therapy have seen significant improvement, including reversal of symptoms and/or remission. Dr. McPherson Brown, the Washington D.C. area rheumatologist who pioneered this treatment some 50 years ago, also saw improvement in mixed connective tissue disease, ankylosing spondylitis, dermatomyositis and polymyositis.

3. What dose is used and what is the cost?

Minocin (a brand name of minocycline) is often the antibiotic of choice but others are used as indicated. Generics are less costly, but some are not as effective as others although many patients are successful on the therapy using generics. It is helpfull to inquire of other patients which generic version they use.

4. Can other antibiotics be substituted for minocycline?

Yes. Tetracycline and doxycycline have proven to be effective. Tetracycline is the least expensive and the oldest version of that family of antibiotics. It is more apt to react with foods and should be taken on an empty stomach. Doxycycline (i.e. a brand name is Doryx or Vibramycin) is more expensive. In conjunction with the tetracycline family, clindamycin or other antibiotics as indicated may be used as a support therapy, either intravenously, by injection or orally.

5. Is there an advantage of using minocycline over the other antibiotics?

Yes. Bacterial cell membranes are surrounded by a lipid layer (a water insoluble, fatty substance which surrounds the cell and provides it with fuel). As a means of resisting antibiotics, the cells increase the thickness of this lipid layer. Minocycline has been said to have a very effective penetrating ability. It also has an extended spectrum of activity and stays in the system longer and at higher levels than tetracycline.

6. Are there side effects from using antibiotics?

As with all medications, there are possible side effects. Antibiotics can cause yeast infections, especially in women. Some people experience a heightened sensitivity to sunlight. Using a sunscreen can minimize the risk. In children whose permanent teeth have not erupted, tetracyclines can cause staining of the teeth. Food can impair the absorption of some antibiotics (not as true of doxycycline or minocycline) so they are to be taken on an empty stomach. In people whose stomach has been sensitized, nausea can be a side effect. Tetracycline has an absorption rate of 50% when taken with food. Minocin's absorption rate is 85% when taken with food, making it a better choice if food must be taken with the antibiotic. Diarrhea is another side effect of antibiotics, and can be severe, but this side effect is rarely seen at these doses, and is treatable if it occurs.

7. What can I expect when I begin to take antibiotics?

Antibiotic therapy can provide a return to health that is gradual and somewhat subtle, and a patient may get worse before getting better. It is not uncommon for the recovery process to be a "three step forward, two step backward" process over an extended period of time. Most patients did not get to their present state overnight, and reversing the damage done by rheumatoid disease takes time. The longer one remains on antibiotics, the less severe the flares and the less frequent they become, leading to a greater possibility of remission.

Patients often report improvement of the following symptoms: fatigue, stiff and painful joints, range of motion, muscle tone and strength, depression, memory, appetite, changes in texture of hair and general health of hair, muscle spasms, trigger points, dry, cracked or tight skin, bursitis, tendonitis, or vasculitis due to inflammation skin ulcers. Some patients also see improvement in swallowing difficulties and heartburn as well as a lessening in the sensitivity to cold (Raynaud's phenomenon) which accompanies many of these diseases.

8. Explain the Jarisch Herxheimer reaction.

This short term flare reaction to the antibiotics, named after a German dermatologist, is characterized by increased pain and inflammation in joints and supporting tissues, and sometimes by fever, he adache, and chills caused by the antigens of dying microorganisms being released.

9. How long does it usually take before I see improvement?

The strength of the immune system plays a part in recovery, as does the length of time since disease onset. Significant benefits can be achieved by some, especially in the areas of pain and inflammation, in months, but for others it may take several years.

10. Can I expect to be able to discontinue medication eventually?

There are reports of patients achieving a symptom free remission and a return to normal lab numbers. These patients are often able to discontinue all medications and remain symptom free. However, people with a long history of the disease should be cautious about discontinuing medication. Some continue on the treatment successfully for years.

11. Will antibiotics help me if my disease is in an advanced stage?

In more resistant cases it could be a long, extended period before the patient experiences significant improvement. No matter how long it may take, this approach generally represents a safer treatment than many of the more common, toxic drugs offered as an alternative. Patients have been on antibiotic therapy for decades without serious side effects and have seen significant improvement.

12. Are IVs a necessary part of this therapy?

In severe or advanced disease or in very resistant cases, oral antibiotics alone may prove to be inadequ ate. In these instances, the addition of IVs can add an extra punch to the therapy.

An added benefit to IV therapy is that the medication reaches the tissues and can be used immediately. When taken orally, the amount which reaches the tissues is u ncertain and is determined by the absorption ability of the patient's intestinal tract. However, most patients do not require IVs to have a successful treatment outcome.

13. What blood test should be done to monitor my progerss?

Erythrocyte sedimentation rate (ESR), complete blood count (CBC), rheumatoid factor (RF), antinuclear antibody (ANA). Antistreptolysin-O titre (ASO) and mycoplasma complement fixation (MCF) are helpful. Other tests may be indicated for some patients including liver function studies.

14. Can you explain what these tests tell my doctor and me about my disease?

o ESR, or erythrocyte sedimentation rate, monitors inflammation. Generally, the lower the sed rate, the less inflammation is present in the system.

o CBC, or complete blood count, gives a physician a picture of all the blood forming elements. It can indicate anemia and the presence of infections. Also, it is useful in deciding if further tests are indicated.

o RF, or rheumatoid factor, is a good indication - but not proof - of the presence of RA.

o ANA, or antin uclear antibody, tests measure antibodies that react with the nucleus of cells. These antibodies are often present in lupus and scleroderma.

o An ASO titre is a measure of the presence of streptococcus. It is also helpful in dis tinguishing between rheumatoid arthritis and rheumatic fever when joint pains are present. Strep is believed to be a frequent contributing cause in RA.

MCF or mycoplasma complement fixation test is used to identify the presence of mycoplasma, although it is not highly sensitive to specific strains, and is reported as a titre or ratio. In this particular test, low titres are significant with a titre as low as 1:4 being an indication of the presence of mycoplasma. PCR (polymerase chain reaction) testing is more specific.

15. Has there been any research which supports the use of antibiotics for RA?

Yes, January 15, 1995 ls of Internal Medicine the government research facility, the National Institutes of Health (NIH) published results of a six center, double blind trial of 219 RA patients who used minocycline for 48 weeks. The study group concluded that minocycline is safe and effective for the treatment of RA.

Four other recent studies have been conducted also using minocycline and with other similar findings. Two in the Netherlands by Dr. F.C. Breedveld, one in Israel by Dr. Pnina Langevitz and two at the University of Nebraska by Dr. O'Dell. All four found significant improvement in RA with the use of minocycline. Their results have been published in internal medicine and rheumatology journals.

There also has been considerable research on the infectious cause of rheumatic disease in the United Kingdom by GAW Rook, PM Furr, ABD Webster, D. - and others.

16. Has there been research linking other rheumatic diseases to the use of antibiotics?

The Road Back Foundation funded a scleroderma study at Boston's Beth Israel Deaconess Hospital headed by E. Trentham, MD. which we hope will open the way to further additional research in this area.

17. Where can I find a doctor that will provide this treatment for me?

The MIRA study (pub. 1995) and the O'Dell study (pub. 1997) found "minocycline is efficacious [effective] for the treatment of RA," The door has been open for the use of antibiotics for the treatment for RA. Five other studies (Israel, two in the Netherlands, two at University of Nebraska) also found minocycline a s afe and effective treatment for RA. All five used the word "significant" when reporting the results seen in patients while in their studies.

With these studies and other literature, including examples of protocols for using antibiotic therapy, your local doctor will have the information necessary to begin you on the treatment. We do not maintain a printed referral list of physicians, and do encourage you to ask your current physician for this treatment. However, RBF does have access to a list of physicians who do provide antibiotic therapy for rheumatic disease. Each physician has his/her own approach to treating with antibiotics, and it is up to the patient to decide which the most appropriate practitioner for the situation is.

18. Can I go to one of these doctors instead of my doctor?

Because of the increase in patient interest in antibiotic therapy, we get hundreds of inquiries a month. This is why we work to provide you with resources for using this treatment. The Road Back Foundation can connect patients to a peer-to-peer group of antibiotic protocol network contacts (APNCs), volunteers who will help you to access an AP (antibiotic protocol) practitioner if your physician will not provide the therapy. You can find the volunteers' email address on our web site (www.roadback.org) or post your request with your email address on the RBF bulletin board. We do not post physician contacts on our website so your request will have an email response.

THE ROAD BACK FOUNDATION (RBF) was founded by patients who have seen significant recovery from rheumatic diseases through the use of antibiotic therapy. It is because of these remarkable recoveries that we are dedicated to spreading information about this treatment to patients, and encouraging the medical profession t o offer antibiotics to their patients with rheumatic diseases.

Although this treatment is met with controversy in some medical circles, an increased volume of published research from around the world is appearing in medical journals which support the use of antibiotic therapy. The many patient stories on our web site and others lend further evidence to the effectiveness of the treatment.

The Road Back Foundation does not engage in the practice of medicine. Consult with a p hysician to assess any medical treatment that is being considered. The Road Back Foundation encourages patients and consumers to thoroughly investigate and understand all treatments and medications before proceeding. This material is for educational purpo ses only.

The Road Back FoundationP.O. Box 410184Cambridge, MA 02141614-227-1556www.roadback.org

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