Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; diet and sulfasalazine??

Hi,
I have a question for those who have tried diet,then diet w/ Sulfasalazine. I do extremely well on the diet,went from not walking and in tears to a normal life.What has never gone away is the stiffness.A few weeks after a 2 day water fast,I felt like I didn't even have a disease anymore so I ate starch for 2 wks thinking I was in a remission and it came back with a vengeance.I am just now getting it back to where I was.My 3 day water fast is starting this evening.I was just wondering,if I'm not able to get back to where I was, or if the stiffness never goes away(I'm concerned about damage that I may not feel) should I go on the Sulfasalazine EN?? Is it better to stay off if I can?(That's what I figure-better to avoid meds if at all possible)
Also,do I have to avoid sunlight like the plague?Can I wear sunscreen if I stay in the sun for a prolonged period,or will that not help?
Thanks,
Shauna

Hi, Shauna:

I have taken SSZ and had moderate results while on NSD; without the diet--years ago--it seemed only to make me feel like I was living underwater.

SSZ is a large drug load, and on rare occasion I take it during winter but refuse to stay out of the sunlight during summer; a necessary measure while on high doses of this drug (drinking should also be avoided, but I have no problem there).

But honestly, since I am convinced that the DMARD action of SSZ comes from its antibiotic effects (the sulfapyridine), I just take antibiotics most of the time when running across the occasional mini (micro-) flare.

I doubt that, from one flare, You will have much noticeable permanent stiffness from damage; it is possible, but unlikely. It just may be a case where a good fast will break the cycle and eliminate the dross of inflammatory byproducts.

You might have my AP for AS, or can work out Your own but probably will not really need it but the RBF has a list of antibiotic-friendly rheumatologists in various locales.

HEALTH,
John

Sorry,but what is the RBF?I would love to know of a rheumy in the Houston area who accepts this theory (Klebsiella/antibiotics) do u know of any?
Thanks.
Shauna

Hey, Shauna:

After I typed that, I thought I should have given the Road Back Foundation amplification. It is not that any specific rheumy would know about Kp theory--they follow Dr. Brown's theory about mycobacteria, but at least they do treat with antibiotics and many do use tetracycline, which is approved as a DMARD for RA.

Sorry, I don't know of any, but write to the people at RBF and they always respond with a lead; I'm sure there are many in Houston Metro area: apdoctors@roadback.org

Please include in your email:

1) Your geographic area, country, state, city, or region.

2) A phone number at which you can be contacted. Spam boxes and emails returned as underliverable can prevent replies and a phone number will help us make sure you are answered.

3) The disease you are dealing with.

4) Whether you are interested in a listing of the most experienced doctors in the United States if you want to consider travelling to see one of these doctors.

Your email will be received by Road Back Foundation volunteers who will respond by email.

* The New Arthritis Breakthrough, by Henry Scammell; and,

Scleroderma, The Proven Therapy That Can Save Your Life, By Henry Scammell.

Very Best to You,
John

Hi Shauna,

This is a bit OT, but the thing that made a huge difference to my residual stiffness (some went with NSD alone) was the Miraculous Melrose Liquid Fish Oil. I had been taking a reasonable dose of fish oil in capsule form, but after JimmyWA raved about the Melrose, I gave it a try and WOW!!!

I'm gonna get shares in the company!

Hi John and Shauna,

John, you mentioned Dr Brown's theory about mycobacteria.
Since I work in a Microbiology laboratory I couldn't let that go with a little correction. You should have said Mycoplasma instead of Mycobacterium. The names are very similar but the bacteria are not closely related.

Henry Scammell, the author of the book “Scleroderma - The Proven Therapy That Can Save your Life”, page 169, similarly confuses Mycoplasma and Mycobacterium and this may be the source of your confusion. The two belong to different classes of bacteria.

Mycoplasmas are small (0.2 to 0.3 um) pleomorphic bacteria (once thought not to be bacteria) bounded only by a cell membrane with no evidence of a cell wall and hence they are insensitive to Penicillin. Morphology is variable ranging from coccoid to filamentous to star shaped forms. Cells will not Gram stain but can be stained (poorly) with Giemsa stain. Mycoplasmas are best identified by their formation on solid media of typical, small, “fried-egg” colonies which are from 10-300um in diameter (0.01 to 0.3 mm) and visible only under magnification. Nowadays they can also be identified by PCR. They have a requirement for sterols like cholesterol and so are host dependent.

Dr Brown of the Road Back fame postulated that mycoplasmas are the causative agent of RA and used the tetracyline Minocycline to successfully treat thousands of RA patients and some Scleroderma patients who would otherwise have surely died.

The antibiotic Tetracycline and its derivatives are antibiotics that do NOT act against a bacterial cell wall, instead they are protein synthesis inhibitors that block translation. They have also been found to inhibit matrix metalloproteinases. This latter mechanism of action does not add to their antibiotic affects but has prompted investigation into their use for the treatment of certain inflammatory disorders.

Mycobacteria (genus Mycobacterium) are acid fast (stain by the Ziel Neillsen method), aerobic, non spore forming, non-motile bacilli. Their lipid content is high. They are slow growing with most disease associated mycobacteria requiring 2 to 6 weeks on complex media at very specific temperatures.
Mycobacterium species associated with human disease produce slowly developing destructive granulomas that may undergo necrosis with ulceration or cavitation . Tuberculosis is caused by Mycobacteia tuberculosis and leprosy by Mycobacterium leprae.

I'm taking low dose Minocycline myself - 2 weeks in. The antibiotic seems non-toxic to me and my bowels are very stable at the moment so I feel that the antibiotic activity may contibute to controlling PsA - whether the bacteria causing the attack on 'self' is Klebsiella or some as yet unrecognized commensal organism.

Cheers David

Dave, all that knowledge 'under the microscope' is going to make you very popular around here!
I didn't quite understand it, but I am thrilled to know there is someone here who does.

Hey, David:



Thank You very much for the correction; it is important and I appreciate Your help. It's my sister who is the microbiologist and it does not so easily rub off!

I have not studied the Brown material very much, since my focus has been AS, which is helped by the Cipro group, in addition to the tetracyclines; not sure this is so important to note, but the mycoplasma theory of Dr. Brown did not have an explanation--like molecular mimicry--to account for disease action.

My simplistic explanation (and an observation also based upon watching the scientific community try and explain AS and RA) is that much of what we see are epiphenomena and once a germ gets entrenched, it not only brings along viruses (and even its counter; macrophages), but also its "friends" like many other and similar germs. I suppose that once we become a host, they just gang up on us in a feeding frenzy, and I'm for evicting all of them and let Allah sort 'em out! I've long been thinking that we really don't need all those bacteria in our gut--does the boy in the bubble have all these 'guests?'

Well, Thanks Again and Glad to have any and all information and help,
John

John, I'm interested in your comment that we don't need all those bacteria in our gut. Do you mean 'good' bacteria as well? The ones that we repopulate using probiotics etc. when taking antibiotics?

I'm puzzled and interested in your theory around this.

Hi, Wendy:

I am talking about all of them--the good ones and the bad. Some bacteria have worked out an agreement with our bodies and "help" us digest food or make vitC or B12 but we really do not need them to survive...or DO we? Have we become reliant upon them for our life?

As a taker of broad-spectrum antibiotics, I have to understand that I am wiping out good bacteria along with the bad ones and some of these good bacteria displace really bad things like C. albicans and C. difficile, so overgrowths of these--dysbiosis or colitis or candidiasis--are part of the territory, but I wish we could also eliminate these creatures--just wipe the slate clean and start over, implanting just the stuff we want. Klebsiella is considered one of the beneficial bacteria in our guts, but when displaced into our lungs it becomes a really bad pneumonia and who knows what other mischief it gets up to?

I'm for eviction and asking questions later! I'll take the risks of not having the germs and finding out what digestive difficulties might ensue. But like I said, I don't really know whether the 'boy in the bubble' or others who are so immunocompromised have the normal complement of intestinal flora or not.

That's a question for the biology experts,

Best to You,
John