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June 8, 2014 at 4:37 am #371979
DragonSlayer
ParticipantHello, mino_minion:
I really believe that You have Ankylosing Spondylitis. Have You been tested for the HLA B27 antigen? AS attendant inflammation is usually centered around SIJs and lumbago is common and as it progresses, IBS, costochondritis (ribcage pain), tendonitis also can happen anywhere and hip and shoulder bursitis, neck pain and swelling there is very common. I have some diagnostic tips in my dropbox active signature. Minocycline was not the best drug for me; my AP for AS is also included. Most important is diet.
HEALTH,
JohnMarch 9, 2014 at 10:12 pm #371077DragonSlayer
ParticipantHey, Cookie:
As You might already know, chelation implies an infusion of EDTA solution that helps remove heavy metals; it was the solution in ‘Minimata disease’ (mercury poisoning).
It is a rather sore point with my own experiences, because I did not disclose my use of this as I did not believe it was important, but one of our KA members had no improvement from dietary starch restriction, but great results fasting and it took him over a year to figure out that he had heavy-metal poisoning and after chelation the diet began working. I have no idea why, but this is an anecdotal observation.
RA and AS might be due to molecular mimicry and causes increased immunoglobulin production, and these immune components cause the damage but can be removed with the EDTA, just like heavy metals. But chelation (and all physicians using this know about it) must be done in conjunction with replacing trace minerals and important circulating vitamins (all water-soluble).
The connection with heart/circulatory system is the result of long-term studies one of the original Army physicians did on those individuals who were treated for Minimata disease (a large number of US troops in addition to local Japanese): He noticed that those who had been chelated lived much longer than average–the results were so statistically significant that he had all of his family and close friends chelated. Interesting a friend just purchased a home and I found books on this topic along with bags and needles; they had been chelating themselves, and lived quite long and productive lives (I cannot say whether there is any particular connection; they had books by Dr. Joel Wallach, Jack LaLanne and even Dr. Isadore Rosenfeld.
Well, the thing about chelation is that the explanation is that it removes arterial plaque, so can lower blood pressure by removing some arteriosclerosis. A friend has avoided a second heart bypass by getting chelated often, but a different person was bypassed at Loma Linda and did not need another one for ten years as their dietary instructions were to avoid fats and meats–regrettably the exact opposite of what we should do with AS!
Suppose that is a lot more than we were all wondering about chelation; sorry for the stream-of-consciousness thing.
HEALTH,
JohnMarch 3, 2014 at 6:54 pm #371074DragonSlayer
ParticipantHello, Cookie:
When I read Your post, I immediately thought of chelation and will add to marypart’s input only a little: I had about five infusions during a severe AS flare, and it helped knock it down considerably, and I am very much in favor of chelation in general.
HEALTH,
JohnFebruary 22, 2014 at 6:14 am #371253DragonSlayer
ParticipantHey, lemons:
Yes, but I do not have RA but seronegative spondyloarthritis: AS. Terrible and chronic periostitis or soleus periostalgia. Rather normal in AS.
HEALTH,
JohnFebruary 14, 2014 at 4:34 am #371129DragonSlayer
ParticipantHi, lemons:
HLA B27 is a genetic factor that predisposes a person to AS and not RA: The MHC factors for RA are HLA DR1/DR4 and for SLE (Lupus) HLA DR2/DR3. For Behcet’s it is B51 and there are few others identified, but in UK the test is rather cheap, according to Professor Ebringer, even the dna-level tests I am talking about. If You rang him up and told him You are an RA patient with sausage digits he would recommend the test and be able to tell You where to get it–he is in London and ran the Middlesex AS Clinic for many years. If You wish, I can provide his email and You can contact him directly–but he would be interested in You even if he were (miraculously) convinced You actually had RA.
HEALTH,
JohnFebruary 13, 2014 at 5:55 pm #371130DragonSlayer
ParticipantHi, lemons:
Congratulations on Your success with Your protocol.
I am extremely skeptical about “seronegative” RA; it is almost certainly AS instead, and sausage digits are very common in this class of diseases (includes PsA, which is just AS with more intestinal lesions and a different bacterial complement). Another argument for having the HLA B27 test (Fc or ELISA and NOT serological).
HEALTH,
JohnJanuary 30, 2014 at 3:54 am #370631DragonSlayer
ParticipantHello, Yohannes:
I have never heard of a PsA diagnosis based upon such a limited presentation. More information might be helpful, but I will provide my own opinions as a non-medical professional: Nail-pitting or striations, pustular or scaly patches somewhere on body, in addition to arthritic symptoms absolutely must be present for such a diagnosis, I would believe. And also my own opinion encompasses more than one agent provocateur–two common gut germs that can be reduced with the help of 1) starch-restrictive diet (Mercola site or Carol Sinclair IBS book) and 2) antibiotics. The antibiotics that target the germ that causes the arthritic symptoms might not control the psoriatic aspect as well, but YES–AP has worked for PsAs.
HEALTH,
JohnJanuary 24, 2014 at 6:32 pm #370993DragonSlayer
ParticipantHi, lemons:
I am somewhat skeptical of “seronegative” label, and would want more information: Especially HLA B27 MHC test. “Crepitus” (loud poping and crackling joints) is very common in AS (Ankylosing Spondylitis), as are other factors–vitD deficiency (S-A-D), ROM issues, and crushing fatigue as well as distributed pains.
In defense of coffee enemas, these are in fact useful therapy in all kinds of arthritis, which are universally diseases due to problems of “dross elimination.” The mild coffee is a surfactant and acts like a soap, in addition to other potential benefits. Also important is to drink enough fluids and best choices in RA might be cranberry juice or unsweetened concord grape juice.
But also, it is important to battle inflammation by taking EFAs, especially GLA (borage seed oil–in some considerable quantity) and EVOliveOil by the teaspoonful throughout the day (maybe 5 or 6 times–not enough to produce any gagging). And during times of more severe inflammation, I took 4-6oz fresh wheatgrass juice on an empty stomach–typically 3 days in a row. But fasting was always the best way for me to eliminate inflammation; my own disease was very food-related and I stopped eating all starches for several years. AS is highly cyclic and one day can be very normal but the next day impossible to get out of bed–and it is all diet-related: Deep-fried starchy foods would totally freeze me up. I have heard from some with RA that cutting out starches does help reduce their inflammation, just as Mercola suggests.
The light box is a great idea, but oral VitD is still very important.
Hope You find relief soon–it is good to experiment and even keep a food diary and chronicle symptoms.
HEALTH,
JohnNovember 27, 2013 at 5:15 am #370476DragonSlayer
ParticipantHi, lemons:
…sero negative RA. When I told the rheumatologist my history he totally dismissed my past back problems and said they weren’t related to the RA. He pointed out that the lumpy swellings on the back of my hands were classic RA. Is it possible to have both RA and AS ?
I believe You probably have AS; nodules are not uncommon in AS, but there is a very slight chance of having both RA and AS. In my signature (‘info on RA, AS, CD, etc’) is a link to my dropbox page with some useful diagnostic features, but mostly, if pains are symmetrical they are more likely RA than AS.
Following Carol Sinclair’s book “The New IBS Low-Starch Diet,” in conjunction with AP is really the best treatment.
HEALTH,
JohnNovember 18, 2013 at 8:37 pm #370429DragonSlayer
ParticipantHey, Maz:
Sorry, not around very much these days, but in answer to this study, I cannot but wonder at the contortions people go to when they don’t want to accept the obvious. Occam’s Rule almost always wins when time finally reveals the truth.
This paper has elements more and more like Dr. Brown’s assertions, which I do not dispute even in AS. I believe that, once we are prone to one bacterium, we become hosts for other bacteria of all stripes, and whether a viable colony of Klebsiella pneumoniae “looks” like a different creature (because singular Kp do not exude the muccopolysaccharide envelope–which is in fact not a true or effective bacterial ‘wall,’ but colonies produce this glue which binds them together and also picks up camouflage), or there really are other bacteria all involved in a disease does not matter.
The study suggested that antibiotics do not work in AS-family diseases, but I vehemently dispute this claim of course.
Louis Pasteur’s critics, with whom he eventually agreed, asserted that it is not so much bacteria as the host–the substrate–that determines the course of disease and treatment, and couple of thousand years earlier, Hippocrates noted that the same disease in two different individuals can appear very different, so there is nothing at all new about suggesting the diseases are modified by the host’s genetics, but it is a convoluted and confused reasoning.
I prefer starting with the salient observations, acting upon speculations and discarding what has no effects, and eventually achieving resolution. It is incorrect to suggest that a bacterial hypothesis has no potential therapeutic role. Sometimes, I wonder whether these researchers actually studied the existing literature before performing their experiments or publishing their own musings: The scientific method begins with very liberal speculations, but once it ends, it ends with a very narrow answer–one and only one correct answer and this is very tyrannical albeit not capricious at all.
In a world that becomes more capital “L” Liberal daily, such ultimate TRVTH (that is, “TRUTH” the way it is written in stone) is anathema; people want ‘wiggle’ room to allow themselves the ability to equivocate everything away. In AS I hear from people all the time that “diet did not work…for me,” (and sometimes it really does not work) so it must be a “different kind (or cause) of AS.” This kind of thing heaps more inertia upon our situation, and contributes to “paralysis due to analysis.”
In AS the real answers have been suspected since 1973, reduced to successful therapeutic practice since 1983, and proven in hundreds of peer-reviewed accepted scientific papers prior to but especially focused upon 1992. The “medical industry” (guilds) still balk while they continue to injure their patients–and bury their mistakes. They still get a lot of mileage by telling patients what they want to hear, instead of the truth–it is up to us, with wonderful support like this very site, to help each other.
HEALTH,
JohnOctober 30, 2013 at 12:12 am #370059DragonSlayer
ParticipantHello, Barb:
Nausea is common when crossing over into ‘benign ketosis’ which is essentially carbohydrate withdrawal.
When doing a fast, there is a characteristic 24 hour headache that begins after about ten hours of food withholding, then a couple of days later, some actual nausea for the transition. This can last for a few hours to longer; some people do not do very well on this, depending upon their experience with food withholding, but a water-only fast might be a better way to rapidly assess whether the longer-term modifications would be helpful. Fasting knocks down most of our gut bacteria including the common fungi, and these ‘react’ when not fed–these will drive us to hunger, and even determine the foods we choose, to some extent.
HEALTH,
JohnOctober 20, 2013 at 4:06 pm #370203DragonSlayer
ParticipantHello, Debera:
I would answer YES!
Because I am nearly certain that there is either no or very little difference between PsA and AS and even if the germ is not the same, the molecular mimicry mechanism is identical and in fact if You are HLA B27 positive the disease should be called AS and NOT PsA.
Problem with antibiotics: Some people have not paid enough attention to DIET when taking the antibiotics and this has sometimes led to a very rapid recolonization by resistive strains of the provocative bacterium (Klebsiella pneumoniae).
So while I am quite optimistic about using antibiotics, I highly recommend first doing the diet (this sounds like the evolution of Dr. Mercola–enough so that I have some confidence: Certainly, check out his dietary recommendations): “The IBS Low-Starch Diet,” by Carol Sinclair with foreword by Professor Alan Ebringer. The diet is discussed at length on NSD Forum http://www.kickas.org.
The bactericidal antibiotics (like Cipro and Flagyl in my arsenal) should be taken with some more strict attention to diet before and during the short course, however, bacteriostatic agents (like tetracycline, doxycycline, etc) are less likely to produce (select-out) resistive strains, so diet can be a little less-strict when taking these during the cycle that should be called ‘maintenance.’ It takes a series of treatment and maintenance cycles to properly treat these diseases: When I began (by lengthy fasting) my ESR (inflammation marker along with CRP) was >100 and today measures between 1 and 9 and I am no longer so strict with diet, but if AS rears its ugly head again, I know exactly how to treat it/beat it back into submission!
My recommendations are of course diet, but have the B27 antigen test done (Fc or ELISA or dna-level testing; the ‘serological’ method is very unreliable, producing many false-negatives). And if You can look over the diagnostic help file in my dropbox page (active link should be in my signature: “AS Resources” or something) for other important symptoms that can help support the AS-(family) diagnosis.
But certainly keep to a diet and do some supplementation: VitD, lysine, vitC, vitE, niacin/niacinamide and good probiotic yoghurt like Stonyfield Farms or Brown Cow brands and at first You might not tolerate too much yoghurt but take 2oz each time 2X daily.
These diseases are gut-mediated or highly dependent upon the condition of the intestinal tract: Drugs which increase permeability of the gut will increase disease activity (NSAIDs even including aspirin) foods that are the worst are popcorn, and breaded-deep-fried things–onion rings, fish and chips, etc. I see these “Funnel Cakes” and “Fried Bread” signs at carnivals and just recoil in horror! But for 75% of the population that kind of stuff is not so poisonous, as are the interiors of supermarkets; but our foods are found along the margins of these stores–the produce and meat sections.
All physicians can do is treat symptoms; we must very actively participate in our own recoveries as there has been no pill invented that can undo the effects of our lifestyle.
HEALTH,
JohnOctober 18, 2013 at 5:50 am #370160DragonSlayer
ParticipantHi, Suzanne:
This is very interesting. When I had severe AS, I got asthma as part of the disease and I was able to trigger it with foods and it was seasonal, but skipped low-pollen seasons. Eventually I found that AS was caused by Klebsiella pneumoniae, and once I began treating with both No Starch Diet plus antibiotics, the asthma disappeared, also. I was then unable to trigger it which was a good thing to expand my diet, then. I KNOW there is a connection with some forms of asthma, certainly.
HEALTH,
JohnOctober 17, 2013 at 2:21 am #370184DragonSlayer
ParticipantHello, flower:
Research on Antibiotics Reveals Silver Acts as a Booster, While Mixing Certain Antibiotics with Statins Can Be Devastating is a pretty good article.
All drugs and especially antibiotics but even more especially otc NSAIDs are very dangerous and should be taken and undertaken with extreme caution and awareness of side effects.
HEALTH,
JohnOctober 14, 2013 at 11:41 pm #370181DragonSlayer
ParticipantHi, gordbentley:
Many people with AS get psoriasis, also. I believe that this aspect of the disease is due to the underlying cause of the condition: Permeable gut, or LGS (Leaky Gut Syndrome). And I have been informed by some researchers who are working on this problem that psoriasis is caused by a different germ than causes AS, but it is as-yet unproven and unidentified.
The best thing is to eat gut-friendly foods like yoghurt, lychee fruit, okra, and similar things and supplement with the vitC, lysine, niacin/niacinamide, vitD, and vitE. If AS is part of the disease, or sometimes mis-identified as PsA, it is better to totally avoid starches and especially all breaded and deep-fried foods, not just gluten.
I would do a ‘reset’ diet (“Fat, Sick, and Nearly Dead” movie), and then continue with an elimination diet to see which foods provoke the psoriasis.
I had pustular variety that came on very rapidly after eating any starches, but had very few scalar lesions, and I do not know how long it takes to produce these, but they are stubborn.
Additionally, adding colloidal silver to my antibiotic protocol (Mercola recently touted a study promoting a synergistic effect combining AP with CS) I would try on a rare basis, but today would consider taking it continually, also adding the occasional round of Flagyl to my standard AP.
Hope You overcome this soon,
HEALTH,
John -
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