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Lynne, no problem at all with your communication. It's very good. It is helpful to some extent to understand that your particular autoimmune disease is scleroderma, and also it's very gratifying to know that using the protocol on the pulse dosing regimen has really improved your situation. There MUST be some connection that doctors around the world, and certainly in the U.S. are missing in regard to the benefits of these particular medicinal chemicals of complex reactivity that do have a CURATIVE effect that is not achieved with standard treatments.
John's Rheumatoid arthritis is another very interesting case of the same phenomena working in the case of severe rheumatoid arthritis. He has pursued, as stated in the previous posts that The Marshall Protocol is indeed additionally perhaps beneficial as well using the Benicar. But my only concern is that some people report very bad side effects with the use of minocyclene or Benicar that prevent them from continuing the protocol after very adverse effects.
The next question that comes to mind is, WHY are some having such severe reactivity? Is it a harmful, potentially destructive problem due to individual manifestations that different bodies react to? OR is it possibly an intolerance to handling these Herxheimer reactions that Dr. Marshall and others say is only an indication that the treatment is killing off pathogens within the infected cells of the immune system?
In my own situation, I am dealing with the problem of no doctor local support if there is an adverse reactivity requiring possibly emergency attention by a doctor who is unfamiliar with Herx reactions. It puts my daughter at potential risk, and overall I can find no doctor within a few hundred miles who will agree to utilize these protocols, and my individual limitations make me unqualified to administer these drugs legally on my own. If I caused harm to my own daughter, I could never forgive myself for assuming I can treat this disease on my own. I am simply not qualified to make such a decision and follow it up with any local support. There are even disagreements as to the efficacy of antibiotic or Benicar treatment for some individuals who do not respond well to such intervention. Thus I'm caught in a Catch-22,,no win situation where I could cause severe harm to my daughter. It is this incredible resistance by fearful physicians that is hampering all efforts to handle this in what is supposed to be a Top 100 Hospital in America. The fact is, all the physicians in this large institution are in a defensive position in a large HMO that will NOT try any treatments outside of the standard old treatments that are very toxic long term. However, the consensus is that their treatments are the best possible, and all other claims are nothing more than quackery. Thus she is kept on the standard accepted regimens regardless of anecdotal claims and they certainly do not understand pulse regimens with antibiotics which they do NOT understand in how they perform in such a biochemical complexity beyond any accepted norms of treatment.
Thus the local community huge hospital will not accept my layman's advocacy and consider it an insult to their huge practices where THEY have had the superior training and thus implied advantage over any internet “quack protocol” that they will not entertain as proper medical treatment. This is their attitude and it is the unwritten law of all U.S. medicine that such practices will NOT become a part of their procedures. Thus I go rejected in my attempts to help my daughter in simply asking them to pick up the phone and at least TALK about other options. They never do. It is also said that systemic lupus represents to some extent another variation that will not respond as well, if at all, compared to the possible benefits of the alternative protocols in the treatment of Rheumatoid Arthritis without the mixed connective tissue and systemic effects of lupus. They say the same thing about scleroderma, and that it is different from systemic lupus. On the other hand, Doctors of the antibiotic solutions say the type of autoimmune problem is not that much of a factor. The antibiotic/Benicar solution STILL represents the best alternative possible from their perspective. Thus, I am caught in a very difficult situation where this community will NOT accept alternative theories or claims.
Goliad:
There are many AP doctors in Texas, one is in Lufkin which Mapquest indicates is 170 miles or approximately 3.5 hours from the city you list. The doctor there maintains a website which provides an email. If you would consider traveling this distance to see an experienced AP doctor, maybe you could contact her and give her the specifics of your daughter's condition and what you are looking for in terms of treatment. The website address is: http://www.drrima.com.
Good luck,
Cheryl
Cheryl,,thank you very much for the referral suggestion of the doctor in Lufkin, Tx. I did contact her about 2 years ago, and she basically discouraged any attempt to see her. She was not encouraging at all, and I felt wanted no part of this complicated case. It was very disappointing, but I will not pursue her as a treatment physician based on her negative response. I think our daughter's case is extremely fragile and dangerous to treat, so she was not interested in taking it on. Thank you however for your generous thoughts. Sincerely, Goliad
Goliad,
If you would consider the MP have you asked on the MP site for a doctor who uses that specific protocol. I know there are doctors on the MP list that are not on the RBF list.
Just trying to throw out options.
Cheryl
Goliad – your catch 22 sums it up pretty well. They have the credentials, you (and I) do not. It is much as I said before. At some point you will have to decide to follow today's standard in medicine or to try something different. You don't get any guarantees, not from the mainstream nor from the alternate protocols. If something goes badly wrong with either choice, you will kick yourself. I would. I think you have figured out what you need to do and you are only steeling yourself to do it. Good man. Do what you must.
I had huge misgivings about starting AP for months after learnign about it, right up until I did so. Once I began I realized that even if I was wrong, I felt a thousand times better for taking charge of my own treatment. I knew then even if it were wrong that from then on I would be the decision maker. My rheumatologist didn't want me to participate in any way other than taking his medicine. He frequently scolded me. What a jerk. Your situation is a little different. It isn't your life but your daughter's. But hey, we have children too. My daughter had asthma and two inhalers. She seemed to be getting worse and worse. I looked up the inhalers on rxlist.com and found that one was a steroid inhaler. Given my belief that her asthma was microbial, I figured the steroid inhaler would only make it worse. I threw that inhaler away and started her on 25mg of Minocycline QOD from my stash. That was a frightening moment for me. Within 6 months she was vastly better and now she plays all-star soccer. I think I was right on that call, and doc was wrong, but I stewed in fear for months and how would I have felt if she got into real trouble? Well I would have gone back for the steroid inhaler, and pretty sheepishly. But it turned out that I was right. This stuff isn't easy, especially for parents. You have to figure it out and go with your choice. If you choose AP (or MP) then you must find the doc. Good luck.
John, I appreciate very much your sharing of your own experience with the gutsy move to go ahead to move into the antibiotic protocol. Did you find another doctor for this Rx, since your rheumatologist was scolding you for that decision? Being the jerk he is, (and many are), I have not even broached the subject to any more standard operating rheumys. They are mostly on the same sheet of music.
I will again look at the limited list of doctors who may be some 75 miles from here unless I MIGHT be able to convince our Internal Medicine doctor to go along with my request. But I think this big HMO hospital with it's closed minded policies influence all their doctors greatly not to deviate from what are unfortunately common standards that require them to cave in, if not outright defy me, where their peers are concerned in this one big organization. I have been shocked and angered by the refusal of ANY of the numerous doctors in that place to consider even picking up the phone to consult with the AP and MP doctors who are obviously in a number of cases, and I assume hopefully a majority of cases have been getting positive results with the AP and MP. Whether to still go with the MP in addition to the Road Back AP is sort of a puzzle in my mind due to some adverse reactions that I do not have ready access to in order to enable me to understand just what the adverse problems were. But I will continue to pursue some other sources for more info on this, including Dr. Marshall himself. Dr. Marshall is very adamant about the use of Minocyclene rather than Doxycyclene. I did, on the advice of a California physician rheumatologist familiar with the Road Back Foundation, go ahead and put my daughter on Doxycyclene pulse therapy on Mon, Wed, and Fri for the past several years as he suggested, and she has tolerated it well now for some 9-10 years, but no remission in the case. This could well be due to the several other standard rheumatology and a nephrology specialist who has prescribed Cell Cept, continual use of prednisone, 3 hypertension medications ( Nadolol, Norvasc, and Cozaar) plus plaquenil, one baby aspirin per day for Antiphospholipid antibody responses, Zyrtec for a common problem around here–allergies, and she has to use Vicodin and/or 600 mg of Ibuprofen for migraines. The other God-awful problem which was discovered early on was a second angiogram that missed the look of her carotid arteries the first time and which showed some possible neurological “spots” that the neurologists shook their heads about and sent her to Dallas Children's Hospital ( a very rare event for them to seek other opinions) because the 2nd angiogram showed a complete blockage of her right internal carotid artery, with compensating blood flow around that blockage via other arterial routes. The spots were considered either of no consequence or representative of minor evidence of TIS (transient ischemia mini-strokes) that futher complicated the diagnoses. The conclusion after the Dallas specialist evaluated the angiogram results was that the carotid artery must have been an old event that probably was the result of the traumatic dissection of that artery which being delivered by a rough forceps delivery at birth. (But TRY telling that to any doctor groups who would deny or suggest that such a possible event is always representative of a small number of birth traumas due to poor delivery.) Thus my wife became very depressed as this case became more and more a complicated morose development of events that defy any description of how horrible we felt. Even the radiologist who performed the angiogram looked very remorseful and was very serious and even apologized for having to give us such bad news in addition to the serious lupus problems. This added even more discouragement to an already traumatic emotional event with the complication of Antiphospholipid Antibody pathology. She has had 4 of these Mini-stroke events over the past 12 years. These caused her temporary paralysis for brief periods, and required 911 calls each time, but only palliative treatment for the vicious migraines quelled the pain and symptoms.
As you can see, there has been enough to put all of us into early graves with all these findings. The question with such complications is whether I try to influence her with the risks entailed whether she wants to gamble on her life further. Currently she is being maintained on 4 month watch intervals of her chemistry to monitor the protein spillage, her Class III kidney lupus involvement, and naturally I am quite scared to pursue any dramatic change in her compromised condition. This may well be why one doctor in Lufkin, Texas did not want to take on her case. I suppose this is also complicated by the fact if she dies, it could put the alternative doctor at risk of severe liability. But I think they will be sure to eliminate that possibility when we give any form of informed consent as to the risks involved. Additionally, I am now broke due to 13 years of paying enormous local hospital bills for the hundreds of visits and tests for all these complications. Maybe I'm just trying not to put her additionally more into Harm's Way.
Again, I apologize for my lengthy entries, but felt it necessary to explain the extreme complexity of her case. Thus my reluctance ot accept any more traumatic event upon that child. She is very stoic, and I think she has a definite, understandable depression as all her friend except two have abandoned her because she is not able to engage in a lot of social activities. This fact adds to the already traumatic events she has endured. Our lives are very abnormal by the limitations all these many years of events have imposed. My wife is now ill, and it makes me question whether this disease may well have some contagious aspect with the constant stress upon a vulnerabel immune system.
Ok, enough of my long posts. I again thank you all for your participation in trying to help me find help, and make some decisions, if any other than following current procedures as routine until there is some fatal outcome.
Sincerely, Remmel (Goliad)
Goliad,
My doctor doesn't think herxing is a good idea because inflammation leads to joint damage. Her treatments do increase the joint pain, but she gives me anti-inflammatories(natural ones) and tells me to adjust the medicine downward if the flare is very much.
Also, there are many, many possible causes to A.I. diseases, not just bacteria. Obviously, the immune system is compromised, but why and from what?
For me, an overly toxic body has been the main issue. Toxins come from bacteria, environmental issues such as molds, heavy metals such as mercury, pesticides, additives in food, medications, etc. Everybody everyday is detoxing foreign matter from their bodies. The healthiest people do it best. Immune compromised people do not do it as well and they get sick. As we age, our bodies absorb nutrients less and produce less natural detoxifiers such as glutathione. Studies have found glutathione levels to be high in healthy people and low in sick people.
From the start, my original doctor felt I was toxic and that it was my main problem. He gave me IV's of glutathione for a year and I went from a high moderate RA to a weak positive. I was also on 100mg minocycline MWF.
After one year, I was bit by another tick and got sick all over again, so I went to a lyme doctor who is also a rheumatologist. She ran multiple tests and found H. Pylori, Babesia (tickborne parasite in my red blood cells) Ebstein Barr Virus, QFever, Tapeworm……I think I named it all. She began more intensive antibiotics as well as some herbals. I really got better.
She also wanted me to start Methotrexate and Enbrel to stop the inflammation. By this point, my left wrist had lost all its cartilege and she didn't want anymore damage. Please note, I lost the left wrist while on the minocycline.
It took awhile to get the MTX and Enbrel and by the time I did, I was feeling great and really resisted taking them. All in all, I was only on MTX 3 mths and never began the Enbrel.
Nov 07 physical exam found no inflammation. Bloodwork still showed weak activity. Jan 08, physical exam found inflammation in all joints. Surprise to me as I was not in any pain.
She suspected I do not detox properly and ordered a gene test specific to detoxing. I am severely deficient in many genes necessary for detoxing. This means from birth I have not detoxed like a normal person. My main missing ingredient is glutathione.
I have been deficient in glut from birth but was able to function although I had strep throat every year of childhood along with sinunitis, tonsilitis, bronchitis. In my 20's I developed allergies and at 29 was diagnosed with mild graves disease ( a thyroid malfunction)
At 49, RA. Now she has me on IVs of glut as well as a nasal spray of glut compounded for me. She also has me on an intense herbal detox for the next 4 to 6 mths.
All medications have been yanked except 100mg doxy MWF (she didn't like the mino for some reason) . The gene test shows exactly what I am unable to detox. There were many things such as molds, exhause fumes, cigarette smoke and NSAIDS, antibiotics.
She said “I have been poisoning you”.
One of the ways the body detoxes is by eating cruciferous vegetables. I like my veggies and currently I am eating vegan to help this detoxing along. I am juicing veggies.
Cruciferous vegetables as well as garlic, onions, leeks, etc are so good at detoxing the body, that is suspected to be the reason why they help prevent cancer.
Goliad, I tell you all of this to let you know there are so many possible reasons as to why your daughter remains sick. Not the least of which could be her inability to remove the toxic side effects of the drugs from her body.
How is her diet? All of us who are sick should be eating a stellar diet. Heck, so should the healthy people.
You can change the diet now without extra cost or a doctor visit. In fact, you will have to search for a doctor trained in nutrition. They don't get it in medical school. For me, changing my diet brought about an obvious leap in healing. Obvious not only to me but my whole family. Everyone is eating more veggies and drinking fresh made juices now.
I know this adds to the number of things you must consider, but as my doctor said “When you get this sick, it is never just one thing”.
Susan
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