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I was diagnosed with psoriatic arthritis last week and am considering ap therapy. But my mother has some mild symptoms like with her nails and a few fingers that are swollen and painful. If my issue is a true genetic one, does that mean that ap therapy won’t work for me?
You can look at the genetics and say that you are predisposed to developing PsA but not everyone with those genes will develop PsA. So what are the factors that cause one to develop it. It can be environmental toxins, viruses, bacteria, food allergies, gut disturbances. Usually a combination of all of the above. Many of the “bugs” (Lyme, mycoplasma) can be passed from mother to child either through gestation or close contact and if not transferred gestationally then living in the same environment can expose you to the same risk of exposure.
I was diagnosed with psoriatic arthritis last week and am considering ap therapy. But my mother has some mild symptoms like with her nails and a few fingers that are swollen and painful. If my issue is a true genetic one, does that mean that ap therapy won’t work for me?[/quote]
The above is Chlo888’s post.
Chlo888,After reading your post, and the post just following it, it was noticed that some of the biggest triggers for so many of us were not seen. These are some of my thoughts… after about 20 years now of daily reading/searching and experiencing many phases of chronic illness. I believe some the biggest triggers can be lumped together, and I’ll attempt to phrase some of them together:
We begin as what our genes have put together, but other things (positive and negative) can influence the health of ourselves as organisms:
Especially in society today, there is so very much stress — we think we can get by with too little sleep, too little or too much exercise, too much to do, too much worry, etc. — all take a daily toll. Women just a generation or two ago generally stayed home and raised their children — not always but generally not as stressful for the parents and children.
The food we eat is not grown the same as it once was, now generally lacking needed nutrients in the soil to supply necessary nutrients. Industry dumps just enough of the type fertilizer to make them green and grow quickly … unless grown organically.
Our food choices too often are quick, easy, processed, and lacking needed essential fatty acids, etc. and too often containing harmful additives that our bodies, if they are able, have to try to overcome.
Seems we don’t get enough exercise; or, if we do exercise, we can be obsessive about it, overdo, and this can become harmful instead of helpful, as it uses up needed minerals and other nutrients that our body is unable to compensate for. Conditioned runners, football players, and other athletes (we read in the papers or see on TV) have heart attacks and sometimes die. In reading about this and heard/seen on TV, this has frequently been caused from a deficiency of minerals, especially magnesium, to keep the heart functioning properly, etc.
Some of us, genetically, lack ability to utilize/convert foods — B vitamins, especially, and B-6 (P-5-P is a form that has been converted and is more easily utilized — in Thorne Research has shown this to be a cause in such as juvenile onset diabetes, an old disease Pellagra, Schizophrenia and others. Also in longterm research by Dr. Marion Ellis and Karl Folkers, carpal tunnel syndrome was shown to be from lacking B vitamins, and this condition is also related to heart disease. When this deficiency was corrected, so were the carpal tunnel and the particular heart problems. Of course, this is just the tip of the iceberg.
Longterm, low-dose AP is often needed by patients, but many antibiotics are prescribed for illnesses, and patients are never told how necessary it is for us to always replace the probiotics (friendly organisms that help make our B vitamins in the gut) when taking antibiotics.
The above is not the whole picture, but we must read and learn. Based on my own experience, I’m guessing that your Mom — and perhaps you, too — may be predisposed to gut overgrowth with yeast/fungus. We don’t have to have had the typical woman’s yeast infection (ironically, never in my life have I had one of those incidents); however, after two years of beginning illness, it was later found, I did have yeast/fungal overgrowth in my body, from the two years of many illness onsets, and each time given RX antibiotics to take for 10 days; and each time, was NEVER told about taking probiotics. Dr. William Crook (a pediatric allergist by training) became the foremost researcher of this subject, and wrote 14 books before his death in 2002. Since his work and influence in these areas, pediatricians became among the first physicians to educate about probiotics. HAVE ANY OF YOU GONE TO A PHYSICIAN, BEEN PRESCRIBED ANTIBIOTICS, AND HAD THEM ALSO SUGGEST/PRESCRIBE PROBIOTICS FOR YOU??? Inquiring mind wants to know.
We don’t get enough sleep, so our bodies don’t have the rest and time for normal detoxing and repair during the night.
When we are younger, our bodies can compensate for many of the stresses to them, but as we grow older — or become more debilitated — our bodies loose their resilience to bounce back. We don’t understand the toll of what we are doing, neither do most physicians these days (most, I’ve read, have not been trained adequately in nutrition) don’t educate us about these aspects when we are ill and see them — those RX’es may treat our symptoms, BUT the majority of them don’t give us enough informationn to treat/change the CAUSE.There is much more! If you go to Group Discussion and type these words in the search window, a series of previous posts come up that may be helpful with some of the conditions we experience. [One of the words used was “Stress” but by the time I keyboarded all of the above, I forgot the other word used. Anyway, if you just use the word Stress, I noticed many of the same posts showed up as they did when I used both of the key words. Sorry about that.]
I’m sure I have a certain set of genetic predispositions, but this body of mine until it started being used as if it were “Super Woman” was very, very healthy and strong and able. I believe we have to learn HOW to take care of ourselves, and then DO IT! (A ha ha: Don’t do like I do. Do like I say do. LOL] But, it’s hard to change our “spots” and start really taking care of ourselves.
Good luck to you…
@chlo888 wrote:
I was diagnosed with psoriatic arthritis last week and am considering ap therapy. But my mother has some mild symptoms like with her nails and a few fingers that are swollen and painful. If my issue is a true genetic one, does that mean that ap therapy won’t work for me?
It’s very unlikely that your PsA is purely genetic. It’s like Parisa said. My guess is that you got the infection from your mother, or because you were both exposed to some of the same things.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein@chlo888 wrote:
I was diagnosed with psoriatic arthritis last week and am considering ap therapy. But my mother has some mild symptoms like with her nails and a few fingers that are swollen and painful. If my issue is a true genetic one, does that mean that ap therapy won’t work for me?
Hi Chlo888,
Welcome to the RBF discussion forum! Nice to meet you, but sorry you had to seek us out.
There are a number of PsAers here who will hopefully chime in when they see your post to let you know how they are doing on AP (antibiotic protocols).
If these additional thoughts help, at all, there is some interesting information on the genetic question in the Henry Scammell book, The New Arthritis Breakthrough, on page 275, if you have a copy. This book should pretty much answer any of your burning questions about the therapy and includes the original Road Back book by Dr. Brown.
There is no doubt a genetic component that predisposes most of us to rheumatic disease and there is a great deal of scientific research out there now describing how pathogens are able to insert themselves into our own DNA and manage to switch on genes. Viruses are particularly adept at doing this and mycoplasma was, at one time, thought to be a virus as it has some of the characteristics of a virus, but is often described as a cross between a bacteria and virus. Interestingly, some pathogens are highly pleomorphic (shape-shift) and they have evolved this way to avoid immune detection and for self-preservation, actually able to cross our own cells’ walls to parasitize them. Whether we are passed pathogens in the birth canal by our mothers or exposed to them after birth we will probably never know – probably a combination of both. What is clear is that certain HLA genetic haplotypes are tied strongly to certain “autoimmune” (self attack) diseases, but the real question might be is it true “autoimmunity” or is the immune system doing exactly what it is supposed to be doing? I.e. Going after intracellular bugs and,thus, our own tissues become the collateral damage?
There is the molecular mimicry angle where certain bug proteins may actually resemble the host’s cellular proteins, thus confusing the immune system…from the book on Page 276,
“The attack is targeted to the structure of the invading organisms,and because the structure mimics or is identical to perhaps a host protein or tissue constituent, it may be that there is then a secondary response directed against the body.”
The way Brown described infectious theory as it relates to rheumatic diseases is pretty easy to understand and hopefully you’ll find the book a good read…I must have read it 5 times at least in my first year to really understand what AP entailed, but the great patient stories also kept me going. In a nutshell, it was Brown’s opinion that certain people become sensitized to invading pathogen’s toxins. So, it isn’t the pathogen itself that is the problem but the antigens they create to which the human body responds by producing antibodies. He termed this “bacterial allergy,” or “bacterial hypersensitivity,” so the goal with the therapy and why it is a long-term therapy, is to gradually reduce the pathogen load to slowly re-train the immune system to stop being so reactive to these foreign proteins. I guess in a similar sense, it’s a bit like a mother having hay-fever and her children also developing the problem later in life. Is hayfever a hereditary allergy? Well, maybe the predisposition to hayfever is there, but it takes exposure to an environmental irritant to set it off, as well as other environmental stressors (diet, pollution, stress, hormones, illnesses, etc) , such as A Friend described, to compromise and weaken immune function in the first place.
So, as everyone above has already mentioned, it’s probably a combination of factors and these will vary amongst people, but the bottom line with infectious theory is that the terrain of a person’s immune system is staged or primed – genetics and/or environmental stressors and then bugs, that might not otherwise affect us and with which we’ve probably lived synergistically all our lives, become opportunistic and cause trouble. AP as a standalone therapy has a good anecdotal track record of bringing people with fairly early, mild rheumatic disease into remission within a reasonable amount of time and for those with more longstanding, severe disease it can involve a process of investigation to figure out what triggers might be weakening immune function. By the time Brown saw patients in his clinic, they were usually pretty sick and had been on multiple combinations of standard drugs for a number of years, so he often said that patients could expect a 2 to 5 year timeframe for remission to be reached…this, bearing in mind, that Brown used multiple classes of antibiotics in some cases and not just the tetracyclines. This is where working with an experienced physician can really make a difference.
Whether one believes in infectious causes or not, though, minocycline has great immune-modulating effects that can help to block joint damage and reduce inflammation. 🙂 The best way I found to make a decision about abx therapy was to read up on it and to get really informed about the rationale for its use…that way I was able to make an informed decision and it’s also helped in terms of self-advocating and developing a good working relationship with my prescribing doctor.
Hope something here helps a bit, Chlo888, in your searches for deciding on the most appropriate and comfortable treatment for you.
Thank you for all of your wise posts. I saw my rheumy today and my blood work showed I m negative for hla b27 and my rheumatoid factor screen is negative. From what I’ve read this appears to be decent news though not conclusive.
I am in touch with a dr m locally who I am going to see to discuss ap therapy. My rheumy agreed to write a prescription for mono in but assured me it would not work. He said there are no studies that prove it cures arthritis. Is this true. I’ve talked to at least one person on this board that has no pain via minocin so I am curious as to why the manufacturer hasn’t pushed studies to document how well it works on psa.
Also wondering if anyone has an opinion on an elimination diet approach?
Thanks again for the welcome and such great insight.
@chlo888 wrote:
I am in touch with a dr m locally who I am going to see to discuss ap therapy. My rheumy agreed to write a prescription for mono in but assured me it would not work. He said there are no studies that prove it cures arthritis. Is this true. I’ve talked to at least one person on this board that has no pain via minocin so I am curious as to why the manufacturer hasn’t pushed studies to document how well it works on psa.
Also wondering if anyone has an opinion on an elimination diet approach?
Hi Chlo888,
Just wondering but did the rheumy provide any studies showing that the more conventionally-used drugs “cure” arthritis? Interesting thing is, they don’t, they palliate symptoms and one is expected to take them for life, though in some cases a person may go into remission. AP is not really described as being a “cure” either, but you will hear the word “remission” quite frequently, in some cases people will reach abx-free remission. 🙂 Dr. Brown’s goal was to eventually get his patients off abx altogether once sustained remission had been reached and all disease lab markers were within normal range for a good period of time. However, not everyone will come off their AP once hitting remission and this may depend on a lot of factors, such as age, disease severity, disease duration, attempts to stop AP before with symptoms returning, etc. I have spoken to a good number of people who have come off their abx and who have managed to sustain remission for years, but there are just as many (probably more) folk who either prefer to remain on a low maintenance AP dose for life to prevent the possibility of relapse once remission has been reached. The difference here is that low dose abx therapy is quite bit more benign than immune-suppressive drugs….so benign that teens are prescribed minocycline or doxycycline every day for their acne, long-term.
As for why AP isn’t considered viable by rheumies for rheumatic disease, there are many, many reasons, which are described in the early chapters of The New Arthritis Breakthrough when you get a chance to read it. Bottom line is that few researchers (many of whom receive funding from pharmaceutical companies) want to spend time and resources studying old antibiotics that are off-patent (so cheap generics can be produced) and are considered safe enough that they are used already for many off-label purposes. Typically, you won’t see much new research out there on methotrexate either, which was a drug designed originally for cancer therapy, but is now used off-label for rheumatic diseases. Other than the newer (more lucrative) anti-TNF agents, there is no money to be made in researching older drugs. There was, of course, the MIRA trials, published in 1993 meeting ACR criteria, proving efficacy for RA, and many older studies that you’ll find on the main website…but new studies are less likely to be seen these days.
Here’s one single-blind randomized trial from 2006 showing the efficacy of combination IV therapy and oral tetracycline for RA that was done in the UK in 2006, which is as close as can be got to Dr.Brown’s original therapy (later he used oral doxycycline or minocycline):
http://www.ncbi.nlm.nih.gov/pubmed/16465651
And then the results of a further double-blind randomized study were only just published by the same hospital in May 2011. These results were not as promising, but the study was only conducted over a period of 25 weeks!!! That is only 6 months and Brown was not talking about overnight miracles here in spite of the fact that they’re quoting his work in this article. 🙄 They are also using tetracycline, which is an older generation drug and less effective in most cases than minocycline or doxycycline. Sadly, when studies are conducted like this, they miss the point and, while it’s true that some people respond more quickly than others to abx therapy, there is no allowance for the herxheimer effect that can cause early worsening (maybe why some patients dropped out?) that is evidence that the abx are reaching their microbial targets…so lots of flaws in this follow-up study that wasn’t even as long as the first pilot trial that was run over 1 year, so I’m not convinced one bit that these study authors gave this second study a fair shot and seems they missed the point, entirely. The recommendation is that further study isn’t warranted…so it’s easy to see why “long-term” studies just don’t get run on abx therapy….the standard study period of 6 months just isn’t long enough….even one year is, in many cases, not long enough. Brown said repeatedly that it would take 2 to 5 years for remission to be reached and he demonstrated this in the documentary at the top of this forum with bone scans of a patient he took over the course of three years:
http://www.hindawi.com/journals/ijr/2011/585497/
The thing is, not many patients or doctors are willing or able to wait for AP to kick in nor recognize that the therapy needs to be titrated to the individual as there is no “one-size-fits-all.” So, running standardized trials for all RAers or all PsAers or all ASers, for example, probably just won’t produce consistent results. Also, as Brown said, it’s really not fair to run trials with a portion of the group not receiving any treatment, because these patients really do suffer with their disease worsening during the study period.
Sorry to blether on, Chlo888….but probably the best resource to answer your questions is the Henry Scammell book, which really outlines many of the reasons why AP hasn’t been studied to any great extent for rheumatic patients. So, to this day, we all rely on patient testimonials and, thus, mostly anecdotal evidence. It is worth reading the Harris Poll, though, that was conducted by RBF on the main site!
Re: elimination diet for PsA, would recommend searching out Dragonslayer’s posts and his Personal Progress thread, describing his journey, as he has great personal experience to share. You’ll also find him on the http://www.kickas.org site. There are a number of infections implicated in spondyarthritides and John is probably the best lay expert to share this info with you and the abx that seem to work best for this group of rheumatics.
Oh….and one last thought…here’s an article on the main site describing some of the issues that rheumatologist, Dr. T. (author of MIRA trials) encountered when trying to get support for his minocycline in JIA (juvenile idiopathic arthritis) trials and the resistance he experienced from Wyeth, the pharmaceutical company that produces brand name Minocin.
https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/255.html
Hope this helps in your searches, Chlo888!
That’s a great reply maz. Thank you. I see very clearly now and it all makes sense.
I got my bloodwork back. Negative for Hal b27, sed was 7 too. I guess I caught it early.@chlo888 wrote:
That’s a great reply maz. Thank you. I see very clearly now and it all makes sense.
I got my bloodwork back. Negative for Hal b27, sed was 7 too. I guess I caught it early.Hi Chlo888,
Yes, catching rheumatic disease early and starting AP asap generally bodes well for a swift response. You’ll find Brown talking about this in the book, too. 😉 My MIL in UK had a terrible time being diagnosed with PsA and AS some years ago, as there were no positive diagnostic markers for her either. It was only when she presented with both psoriasis and arthritis, three years in, that the rheumy was finally able to provide a definitive diagnosis.
I think you’ll enjoy the book, Chlo, as you’re right on the money with your questions! It should help a lot to make an informed decision as to whether or not AP is for you. Let us know how you get on!
Thank you Maz…I started my Mino yesterday. My rheumy was open to it but he says it won’t work…of course he’s programmed to say that…I really hope this works!!
@chlo888 wrote:
I started my Mino yesterday. My rheumy was open to it but he says it won’t work…of course he’s programmed to say that…I really hope this works!!
Fingers crossed for you, Chlo….don’t forget that there are lots you can do along the way to tweak things, if necessary. As a guideline, if, after 6 to 8 months there aren’t any tangible improvements, then it’s time to go back to the drawing board to see what can be altered/added, etc. Some folk also do better by adding IV clindamycin, but as you’re like an “unpainted canvas” right now – very new to PsA and haven’t been on other drugs – mino may be all that is needed in your case.
Don’t forget your probiotics daily and if you stick around here, even just to read, you’ll find lots of supportive things to do to help progress along (e.g. diet, detoxing, supps, etc).
Here is Vinny’s PsA remission corner story to keep you going…just scroll to bottom of the newsletter:
https://www.roadback.org/EmailBlasts/ebulletin_summer10.html
We’re just fellow patients here, but lots of peer support if you need any.
Thank you Maz…I have taken the Mino for 1 1/2 days and my symptoms are already improving. I don’t know if it’s the Mino or the fact that I eliminated carbs (in addition to the dairy, sugar and gluten for the last month) in the last 24 hours.
Maybe it’s too early to get excited but I was able to walk today without a limp and I did not take any NSAIDS…
Let’s see what happens..
Hi Chlo888,
Also have psoratic arthritis for the last 14 years , only on Abx treatment two months now getting a lot of relief , from my own point of view its a good idea to read the book The new arthritis breakthrought by henry Scamell.
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