My Scleroderma diagnosis and questions on next steps

[richie]

Trentham was under the same pressures from his peers just as most forward thinking doctors are –Dr Brown -the Aussie doctor who found a cure for ulcers –todays lyme doctors etc — He believed very strongly in his approach –his fee was ridiculously low –and blood work was through the hospital –IN fact he used the same approach financially as Dr Brown –they both certainly werent in it for money rather they were both very dedicated —WE could use more doctors like that —
richie

[Maz]

@richie wrote:

Trentham did not really buy into an infectious theory rather he leaned heavily to environmental causes –I wish I could dig up his old questionnaire which had many many questions relating to environment –

Well, infections are environmental. I don’t mean to be facetious, but I think you’re referring to “toxic environmental exposures,” as opposed to infections acquired from the environment. I find it difficult to believe that Trentham was wholly convinced that there wasn’t an infectious cause, just by virtue of the fact that he was a researcher and researchers know that “the book is never closed” in science. There is still no definitive evidence regarding an infectious cause for SD, but there is certainly a growing body of evidence pointing in that direction for SD. It would be unscientific for any researcher to rule out any trigger for rheumatic disease, because “absence of evidence is not evidence of absence”…it’s an accepted scientific principle. Peer pressure, on the other hand, can strong-arm researchers into corners.

We’ve had this discussion before, Richie, as I’m having flashbacks and I can’t dispute the toxic exposure theory…I think it’s very plausible, but it doesn’t rule out infectious causes. Rather it strengthens it, because an immune system that is overburdened by toxic exposures is also more prone to overwhelming infection! It’s really no different to someone who has smoked all their life, has compromised lung function, and then catches a very bad bronchitis or pneumonia. A person with healthy lungs could fight it off, but a person with smoker’s lungs/COPD would not have a very good fighting chance.

The basic difference between Trentham and Dr Brown was that after IVS -Dr Brown believed in pulse dosing while Trentham believed in daily dosing —

Yes, and we all know how this has turned out from patient experience. SDers, on the whole, don’t herx as they don’t exhibit the same type of inflammation and hypersensitivity that your average RAer does. The Harvard Protocol (MIRA) is not a panacea for any RAer with a ton of inflammation. On the other hand, SDers seems to thrive with the heftier daily dosing and extra immune-modulating properties of minocycline. Alas, Trentham was a regular rheumy (with a twist) and he was not afraid to use immunosuppressant meds for RAers along with minocycline and he stated in his retirement article that the goal was to eventually revert to just the minocycline. Higher doses of minocycline can be tolerated by RAers if they have their inflammation controlled by immunosuppressive therapy. However, it is still a job for any RAer to taper off the other drugs with breakthrough herxing and rebound. So, one either begins treatment with herxing or tapers off the other drugs later with both rebound and herxing…it’s a take your pick kind of situation.

Don’t forget, though….Brown didn’t just use tetracyclines. He used a broad array of antibiotics according to those who saw his original case notes. Millie Coker-Vann said that in some instances, he only used a penicillin and we have seen children here, unable to use tetracyclines, have great success with penicillin for SD.

Incidentally Trentham was only the investigator on MIRA –ODell of Nebraska ran the study and presented it —I do agree there was never any publishing nor was the study really run according to proper norms —BUT the bottom line was that hundreds if not thousands of people got better from scleroderma using him

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People came to see him from all over the world —Beth Israel Deaconess posted a sign in his office if an interpreter was needed –they had them for about 10 languages

Yes, it was truly amazing, but not unlike Dr. S. or Dr. F. today! Dr. S. is one heck of a guy, talking by phone and email to patients and doctors from around the world, to consult on the therapy. He is just as loved for his compassion and treatment success.

—I truly believe next to nothing is really understood about scleroderma–its cause –its treatment from the point of view of why minocin works so well on it —-

I agree and I’d like to see more research in this field, too. If it can be shut off, safely, with a drug with few to no side-effects, this would be wonderful, but if an ultimate cause can be found, even better! Have you ever read Harold Clark’s book, “Why Arthritis?” It’s a fascinating read and he discusses all the complex, potential triggers that may be involved in rheumatic diseases and why it may be so hard to pin it down to one thing. My guess is that it’s a complex interplay of environment (food, infections, toxic exposures, etc), genes (genes need to switched on by something in the environment), hormones, gut health, stress…like a perfect storm of events.

For example the gold standard in treating teen age acne in m inocycline –it clears acne in a flash –exactly why ??/–this tells me it has some kind of action on the skin

Acne is known to be caused by hormones (oily skin) and infections (pores clogged by dead skin cells that then become infected). Minocycline has both anti-microbial and has immune-modulating effects on collagen-rich tissues (including skin) and is highly lipophilic, making it a perfect choice for treating acne because it reduces inflammation while also targeting infected skin pores. My daughter has used minocycline for cystic acne…and it’s interesting that her acne has always got worse for about a month before it gets better after starting a round of the minocycline.

—-Incidentally -we felt the cause of my scleroderma was chemical exposure while in the Air Force over 40 years ago at the time

Certainly sounds like a strong contender for taking out your immune system during your younger years. Ever considered that you may have got an infection, like Lyme, during your life, that may also have been a triggering element? It’s almost impossible to go outside here, right across Long Island Sound from where you live, without a tick hopping a ride.

-I used to laugh about the relationship years ago between DR Trentham and the RoadBack —-Each entity helped the other for their own reasons and own agendas -yet didnt really agree —-Another example Trentham did not buy into a herx for SD folks –right or wrong that was his thinking –It was a running gag that none of Trenthams SD patients herxed because he didnt believe in it !!!! –all said and done bottom line is me and many many other folks are better !!!!!!!!!!!

Yes, this is often the way in research…those on the fringes of research often find they need to ride on the other’s coat-tails in order to advance an agenda. Ultimately, like you, I believe, who really cares what makes mino work for SD? It does and it works well! I also contend, however, that some (not all!) SDers seem to do better when they boost their AP with IVs. Why this is could very be due to Brown’s contention that it was important to take a load off the immune system by clearing away infections in the lungs, urogenital tract, gut, dental and other infectious foci. It just makes sense when someone is so immune-compromised.

Trentham was under the same pressures from his peers just as most forward thinking doctors are –Dr Brown -the Aussie doctor who found a cure for ulcers –todays lyme doctors etc — He believed very strongly in his approach –his fee was ridiculously low –and blood work was through the hospital –IN fact he used the same approach financially as Dr Brown –they both certainly werent in it for money rather they were both very dedicated —WE could use more doctors like that —
richie

Absolutely – right on! 🙂 They were both doctors who forged a treatment path of hope for remission in a relatively benign way that we would not have today without them. I think we’re basically on the same page, Richie. We both just want all rheumatic diseases wiped off the earth for good. Bottom line with the Brown vs Trentham approach, however, is that there are choices, thanks to them and the ongoing legacy of this foundation, and it’s really up to the patient which road they want to choose after they have got informed and have decided what makes best sense to them. The good thing about this forum is that we’re all on the same side here and we all just want to see the success of everyone to beat their rheumatic disease.

[richie]

Amen to your last statement –one last point I have observed this scene for over 15 years now and conclude that over the years the RBF has really helped thousands and thousands of people to to some degree of wellness —IN other words no matter what the opinion or approach the RBF contributed mightily to folks getting better -no hype no self promotion –just good results —
richie

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