AP for SLE?

[Anonymous]

Hi Everybody –

I visited Dr. M (in DC metro area) yesterday, after months of waiting for my first appointment, and he told me that, if indeed I have SLE, the AP therapy will NOT work and I must stick with the Plaquenil (or similar drug)/Prednisone combo – which I really don't like at all and have reacted negatively to.

He is also testing for Lyme and he is hoping that is what I have instead of SLE because then he can treat it with AP therapy.  That would be great, but I don't have high hopes that this is something other than SLE (though I might have a bit of Lyme as well).

I am SO discouraged.

Still on 10 mg Prednisone, though I went off the Plaquenil because I couldn't stand it.  No pain now and getting the Prednisone down 1 mg each week, but need long-term help, and that's where I was hoping the AP would come in.

Is there any encouragement out there? 
Jan

[casey]

Hi Jan,

I dont believe that AP will not work on lupus patients. For one thing , Dr. Brown treated many lupus patients with AP and some severe with much success. Also, if you go to the http://www.rheumaticsupport.net site, you will find some long term AP'ers with lupus that are doing extremely well after being sick for many years. Also, go to http://www.rheumatic.org and read the medical histories page and again, you will find lupus patients who have their lives back on AP. Also, Prof Garth Nicolson has done extensive research on mycoplasma and is associated with clinicians that treat with AP and have also had much success. http://www.immed.org

I have read Dr. M's info and he treats mycoplasma with AP. Have you tested positve for mycoplasma ? Also, with these disease we have, most of us have to address other things such as diet and other infections

[Maz]

Hi Jan,

There is a lot of confusion out in the medical world about Lyme Disease, because the IDSA (infectious diseases society of america) has decided that, if one tests positive (and the tests are less than 60% accurate and that's a generous estimate!), then a short course of antibiotics (2 to 4 weeks) is enough to clear it.

Unfortunately, it's not as simple as that. Many don't get a bulls-eye rash nor recall ever seeing a tick. So, without these clinical features and very poor testing, so many people go undiagnosed…often for years. In the meantime, the infection runs rampant throughout the body and sets up house in whatever part of the body it chooses a proclivity for – nerves, muscles, joints, brain, organs…pretty much any part of the body can be affected.

Another consideration is that ticks pass more than just Lyme. They pass a myriad of other coinfections, including mycoplasma, all of which can produce confusing symptoms that mimic so many of the so-called “autoimmune diseases”. This is why Lyme Bb (a spirochete), quite like syphillis was once labeled, is now called the new “Great Imitator”, as it mimics so many other conditions…..and, like syphillis, in its chronic form, requires longterm, open-ended treatment antibiotics….often in various combos. The reason for this is because, like mycoplasma, it morphs into various forms and hides intracellularly, depositing fragments of itself (called blebs) within the cells, that alert the immune system to attack host cells. Different combos of antibiotics are used to target the various morphed life stages of Lyme.

What surprises me is that if Dr M suspects Lyme, why he would treat you with prednisone. The reason for this is that most LLMDs (lyme literate phsycians) all agree that immunosuppression just allows the infection to gain a stronger foothold. Small amounts may not be a problem and Doc Brown often used prednisone to calm infllammation to allow antibiotics to work more efficiently, but it should not be used alone, as it just masks symptoms and allows the infection free reign, going unchecked.  Plaquenil, on the other hand, if sometimes used to kill the cyst-form of Lyme.

If one suspects Lyme, it is always best to get a proper diagnoses first from a Lyme Literate physician, unless you can find an AP phyician who is also Lyme Literate.

Alternatively, and you don't feel Lyme and coinfections may be causitive in your case, you'd be far better off finding an AP physician who is willing to treat your SLE signs with antibiotics. As Casey says, Doc Brown had much success with treating lupus. You might even consider traveling to see Dr S in Ida Grove, Iowa, to get you started on IV therapy.

When starting out with antibiotic therapy, it's so important to find a doctor who will act as a team with you. AP treament requires someone knowledgable and sympathetic to your concerns to get you through the early hurdles. Not everyone finds the right doctor straight away and it may take “kissing a few frogs” before you find one with whom you feel comfortable.

Don't lose heart, Jan…there are a number of SLE'ers here on the board and, as Casey said, many testimonials scattered about on the different antibiotic websites who have had much success with AP. You will also find some of those testimonials in
“The New Arthritis Breakthrough” by Henry Scammel. Also, if you post a request here, you should be sent a list of different AP docs in your area.

Wishing you all the best in your search!

Peace, Maz

 

 

[Anonymous]

THANKS for your VERY helpful responses. I slept well last night! I am saving these to refer to, and I'm encouraged greatly to continue on this journey.
Txs again!
Jan

[casey]

Hi Jan,

I agree with what Maz said about Dr.S in Iowa. I spoke to him on the phone and he was very willing to discuss me and my sons situation. He also has successfully treated many lupus patients over the years and even though i am in another country, should we run into trouble, i will not hesitate to go see him.

Casey

[Andrea]

Jan,

I have a AP doctor in Annapolis that you may find helpful.  Give me your e-mail address and I will forward to you his name and number if you wish.

[Anonymous]

Txs!!!

JaniceEsher@cs.com

[Author]

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