Cooperative efforts on alternate protocols

[Goliad]

I have, with great efforts within my limitations, over some 13 years tried to get some cooperation in understanding the different protocols advocated in particular for those who suffer with severe Systemic Lupus. While antibiotic protocols advocated are impressive, different patients may well have different problems using such alternate protocols in a society that has a professional closed mind medical profession driven by greed.

   I am specifically cautious to mention any other alternative sites or recommendations due to limitations of the agreement we accept upon entering an antibiotic-ONLY recommendation site. While I agree there appears to be some merit in the use of antibiotics as advocated by the great Dr. Brown, and those few brave souls who still follow in his footsteps, there are too many of the standard doctors in our society who blow this theory out of the water as having no double blind study to prove the efficacy of this techique for everybody who is desperate for a cure. Thus, I am somewhat hampered by the inability to ask about another highly impressive protocol that uses another medication advocated heavily by it's founder along with the use of Minocyclen therapy. We already know some individuals have some problems taking minocyclene, thus requiring other antibiotic considerations, such as Clindamycin.

   The other huge problem I have encountered with our sick daughter, who has severe SLE with antiphospholipid antibody problems in addition to numerous other antibody abnormal reactions due to T and B cell lymphocytes altered by L-forms, is finding ANY doctors locally due to the financial hardships we have who will even consider talking to any rheumatologist or other doctors anywhere due to the huge resistance of our close minded medical community here. Thus, I am torn by the inability to continue financing costly alternatives due to the already huge costs of medications and constant monitoring using the conventional standard techniques that have already proven to be NON-curative. Thus, our daughter may well die in her 30s, since she contracted this disease process at age 12. I hope you understand my frustration in not being able to discuss other sources that are equally impressive with their additional recommendations of other medications. I do not feel free to open my new entry into The RBF with questions about other techiques used in addition by another source. But it is of some merit that I raise questions about alternative therapies, and need more answers by this body.

[Cheryl F]

[user=184]Goliad[/user] wrote:

Thus, I am somewhat hampered by the inability to ask about another highly impressive protocol that uses another medication advocated heavily by it's founder along with the use of Minocyclen therapy.

 

Goliad:

I am not sure what it is that you are referring to, but I cannot see any reason that you cannot ask about or mention this other protocol you speak of.  Ask away!!!

Cheryl Ferguson

[Susan LymeRA]

Goliad,

I don't have any suggestions or wisdom to offer, but I do understand your frustration.  I personally would like to discuss any possible paths to wellness.  All of them from the tried and true, tested and double tested to the way-out-there.

If I had not had the internet, I would never even have known about alternative approaches to RA.  I would have had no option but to follow the advice of my rheumy which was methotrexate.

Luckily, I did have the internet and I am a researcher by nature.  I found so many possible causes to RA.  Dr Brown's AP is just one of them and it is not the only one that is working for me. 

Yet, the rheumy pooh-poohed all the “alternate” approaches.  I find that incredible since his first words to me were “We don't know what causes it and we don't know how to cure it”. 

Fortunately, investigating the possible causes found that I had a number of them and treating those issues has brought me to a very good place today.  I found doctors who believed in looking for causes and treating them.

I thank God for the internet and forums like this one.

Susan

[linda]

Have you tried using NeedyMeds.com for financial help with meds/insurance premiums? They are covering some of my medical costs that otherwise I couldn't afford. Since minocycline is now considered a DMARD, I think it would be on their list of meds for which they help.

So very sorry about your daughter; there is nothing worse than watching your child suffer. I hope you find some answers and help for her,

linda

[Jennhere]

I now the frustration you speak of when you suggest that talking about other protocols is not allowed.  But, I find that the RBF website allows open discussion.  Isn't that refreshing!?  So, while the talk of MP – if it turns into a heated debate- may be frowned upon, a discussion of MP is allowed!  I think you should take Cheryl's advice and “ask away”! 

Jenn

[casey]

I agree with the above post !

casey

[Goliad]

Thank you very much for the positive attitude and willingness to perhaps help me find some answers by the constant asking of questions, which I find doctors have NO patience to follow up, or even accept in their busy schedules. Most of you who have dealt with the American medical profession have possibly, in situations of such horrible chronic diseases been very frustrated and angered by the indifference and poor attitude shown by a few too many doctors as well as their support staff. None of them want more than one or two questions at most. There is no way any seriously complicated disease series such as the autoimmune dilemmas can be answered with only the allowance of 2 or possibly 3 questions due to the overload or disinterest of too many doctors in too many centers. Thus the autoimmune suffering individuals get little help or relief of significance while the possible causes do their increasing damage to the various organs and system operations of the whole body. It is very, very complex, and requires great minds with compassion to constantly seek answers.  

  I apologize for my long writings, but this is a very difficult endeavor where I have run into countless rebuffs, thus reducing any possibility of me gaining any doctor serious investigations beyond what are countless and useless lab tests, scans, or nothing at all just to get rid of me with my serious intentions to work very hard in finding a potential cure that may well be the use of pulse therapy that has been found effective for at least some individuals.

    The main progress, which I hope and pray IS a real breakthough that is not really new at all, but the medical profession simply ignores what has been proposed for over 50 years now. It is incredible that our institutions are NOT investigating seriously with vigor these thousands of people who have responded favorably by the sheer numbers of positive anecdotal results using somewhat variable protocols. But the “numbers” people who want double blind results or nothing, do absolutely no good by condemning what is apparently some very real progress advocated by several doctors around the world, though they are in a minority at this point.

   NOW, with that preface, I would appreciate any of you who can comment on the TWO biggest, and very similar protocols which might be far more beneficial to us all by combining their efforts to bombard the medical lecture halls with their very significant findings over these past years. The huge problem is that most of you, including ME, cannot get to the scattered physicians so far away due to financial limitations and, IF you have insurance, the failure of most insurance companies to cover the recommendations of these two major organizations that have gained much attention on the Internet. I refer to BOTH  The Road Back Foundation and all the work of their researchers, PLUS The Marshall Protocol which uses essentially the same antibiotics, but Dr. Marshall, also advocates the use of a somewhat controversial, and hard to obtain hypertension medication, called Benicar that has a profound effect in addition to minocyclene in destroying the same causative infectious L-forms, or Mycoplasma that current medicine largely ignores and condemns as useless, plus perhaps harmful recommendations, as they largely require the elimination of such immune depressant medications such as prednisone, chemotherapies, and the multitude of long term medications that seem to have largely long term toxic effects in themselves.

  Thus the huge question is: Who are we to believe?  It is very, very difficult to stop a routinely accepted series of complicated medications that are thrown at us in large numbers, such as my daughter has been forced to endure. With the serious caution of current medical centers around the country, who tell us to choose another protocol, unproven by any double blind studies, will seriously increase the deaths should we be so reckless as to believe the claims of such organizations along with multiple alternative routes that indeed might well cause our suffering loved ones to meet their demise much sooner IF these alternate plans do NOT work. Thus we have the double dilemmas: One, an American Medical Society that staunchly defends its position with studies showing they can in many cases prolong the lives of many who suffer autoimmune diseases. BUT, on the other hand, we have NO nearby proponent doctors who gamble on what is considered by many to be “guesswork” protocols that can cause many side effects with possibly fatal outcomes using these Road Back Protocols and/or The Marshall Protocols that can cause some significant reactions of misery, that are referred to as “Herxheimer” reactions, that signify the kill-off  of  these proposed L-forms of invaders of the immune system. In my daughter's case of severe SLE, even some alternative doctors may not take on a case of such severity. To do so, it has been implied, may well be a fatal mistake on my part to recommend such treatments IF it was available here. Two doctors have told me it may be too late in the destructive phases, with the damage already present, to change course so drastically in the treatment process that has included several specialists who would be very likely quick to drop her case should we choose with her consent to gamble on the antibiotic route.

   Again, I'm sorry to be so wordy, but this has become a matter of life and death for 13 years now. But the results have been NO remissions, no ability to stop the course of her SLE, but possibly she is only alive due to the multiple medications, and the doctors finally with the Cell Cept chemo, DID manage to lower the prednisone damage, by the dropping of prednisone levels to 5 mg per day versus the first years of 80 mg on acute flares, down to a period of 20 mg for some years, and the more recent drops to 5 mg. But a lot of damage has occurred. To change the course of these toxic meds, including continued use of Cell Cept chemo may well be a mistake. I simply don't know.  Additional reading of the numerous studies and patient responses as far as minocyclene, and/or the use of Benicar have given me mixed results as to the bad side effects of either one or both of these medications. But with all these years of investigating, within my own limitations as to the very difficult biochemisty involved in their actions,  I find such mixed results, and potential deviation of treatments at this point a possible death sentence for which I could never forgive myself. I hope you understand the huge problems I have faced. I'm certain many of you have encountered the same thing. Yet too, I have found NO two cases of serious autoimmune diseases alike.

    Thus I present this for your consideration and any comments you might have. If you are familiar with the alternate protocols in addition to The Road Back doctors who braved the criticism of their own colleagues, I would be interested to know if any of you have also sought additional knowledge of the very complicated recommendations that attack very much the similar causes, but with additional special lab tests, with added medication, that goes a different direction that is very much over my head as I am no biochemist.  Some have also commented on the bad side effects of Benicar as well. This prevents me pursuing anything other than treatments as usual rather than make any attempt to pursue an even more potentially dangerous course in such an advanced case as my daughter presents.

   I appreciate your patience if you have read this, and your comments. I frankly have reached what I fear is the terminal phase years of this crippling disease that has already caused significant damage to my child. (yes, at 25, she is STILL my child, and her bravery, but miserable life have broken my heart. )  God Bless You all.

[Lynne G.SD]

Hi Goliad;
        If I had to start this all over I would seriously consider MP. From a lot of the postings that I have read,more people are getting better on that protocol.Since less antibiotics are being used it should also be cheaper except for the Benicar that you might be able to purchase elsewhere.Why don't you do a posting there and ask what they think you should do.They may also have info  to give to your doctor.  Lynne

[Jennhere]

Once you get a grasp on the herx- you can kind of learn to appreciate it.  Even when it's bad.  You know it's a good thing.  Don't be too afraid of the herx.

[John McDonald]

Goliad,

Short of going back to school for a biomedical PhD, which may not be enough, how do you plan to choose among the protocols?

In the end we have to read as much as we can, seek a few opinions and then try our best shot. As in so many things in life, there is an element of faith in any medical protocol. There isn't much risk to the antibiotic protocol as presented here. There is perhaps or perhaps not a bit more risk to the MP. I gave AP an 8 month trial and did so well I continued. How much could I lose in 8 months? I gave MP a 2 week trial, initially and stopped because it worked too well. I restarted 7 or 8 months later when I was better prepared. My point is that you don't have to marry these protocols. You don't have to overanalyze them. You can try them and see what you think.

[Goliad]

Lynne, thank you for your input. I have a question however. You mention, “If I had it to do all over, I would try the MP or Marshall Protocol”??? That implies that you have NOT reached such  trial at this point. My question is, why not? Have you been on routine RA treatments long term at this point, or have you added The Road Back Protocol?? I'm a little confused at to your meaning in terms of what you use as current treatment. 

                                 Sincerely,  Goliad

[Goliad]

John, thanks for your reply as well. I also have a question that sort of confused me. You mentioned that you tried the MP (Marshall Protocol) initially for two weeks, and it “worked TOO well”?? I wondered what you mean by “too well”????  Was there some reaction that caused you to stop briefly.

     I'm glad to hear you have had success with your RA on the antibiotic regimen. Did you return to the use of Benicar? Just wondered. Thanks,

                                                                                Goliad

[John McDonald]

I was intrigued by Marshall's claim, that herxing is necessary to killing the pathogens. I hadn't heard that about antibiotic protocols before. Dr. Brown said something like, “if you herx, don't worry, the protocol is working”.  Dr. Marshall said more forcefully that the pathogens live and prosper in our immune cells and that destroying the pathogens usually means destroying the immune cells, dumping their cytokines in situ and generally making the disease temporarily worse. So to Marshall, herxing is necessary and he says if you aren't herxing then you should worry, and you should change and adjust your protocol until you do herx, and keep on herxing until nothing you do can elicit a herx. To me the idea is like wringing water from a cloth. At first a squeeze will do it. Then you have to twist the cloth, then twist and fold and twist to get some more drops. Eventually the cloth is dry and nothing you do can wring more water from it. In the Marshall view of things, if nothing you can do can elicit anymore herxing then you are cured.

So back to me. I had plateaued on AP after about 14 or 16 months. I felt hugely better but I still had residual RA in my fingers and toes and I had some other lingering symptoms. I certainly wasn't herxing. So I tried the MP for a couple of weeks to see if I could herx. I herxed very well indeed. It was like a jaw-dropping, eye-popping herx that I wasn't prepared for. So I stopped and went back to standard AP for some months until I was in a better position to try some serious herxing again. Herxing alone isn't proof that the MP is working. After all it could just be some weird side effect of the Benicar. But in time I also got some terrific gains from the MP in more than just my joints. My gut and brain work better now. I have even had progress against periodic, embarrassing rage that I thought was just a character fault. Maybe it had a pathogenic contribution too.  These days I describe my RA as 98% cured. I only very rarely have RA symptoms now though I continue to herx in other tissues.  Anyway, the MP worked too well on my first attempt, more than I was immediately prepared for.

[Lynne G.SD]

Hi Goliad;
  I say “if I had to start over” because I am in remission for the last few years.The funny thing is that I was basically using MP antibiotics,a little higher dosage than they use  and no Benicar.Minocin taken twice a day for several years did virtually nothing for me.Pulsed,low dose did wonders and I had and still have herxex that could stop an elephant in it's traks..Everyone is different but this works for me.I still might go on MP to try to totally get rid of this disease.I am doing well enought that I spent 15 hours shoveling snow this weekend during the big blizzard and tossing 4 foot logs into the big boiler for the greenhouse.Not bad for a girl that was supposed to be dead 7 years ago,no?

[Lynne G.SD]

Goliad,somehow I think that you did not understand me,sorry.I am French and have certain problems with English and often am not too clear.FYI  I have systemic scleroderma.

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