The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Dave's progress
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Dave's progress |
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davbrkr Member in Phase 3 
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Old Link: Dave on Benicar First POST for Phase I Day 4 Benicar: 40mg Q6H Minocycline: 25 mg/48hrs Intermittent symptoms in the first 4 days of Phase I: Extreme fatigue, mini panic attacks, severe upper back & neck pain, joint stiffness, disturbed sleep, RSD burning, dizziness, nausea, malaise, zero-exercise-capacity with muscle pain. Even chewing hurts. This is my second 48 hr Minocycline cycle. Instead of Herxing worse on the second day, so far I’ve felt worse on day 1 of each of the two 48 hr cycles. Because of a foul-up in the shipment of my Canadian Benicar order, I had my Minocycline for almost two months before starting my Benicar. In the interim, without knowing that Minocycline degrades in the presence of water, I stored my Mino in the refrigerator where it’s too wet for a readily hydrolyzed medicine. Now I’m wondering if my Mino has degraded enough to give me a Herxheimer reaction in the first 24 hours, and have no “juice” left on day 2 where the Herxheimer reaction is expected to be worse???? Money is as much a reality as infection. Because many of us have been disabled for decades, does it make economic sense to take ALL Benicar sublingually? Since bypassing the digestive tract delivers more Benicar, would 3*40mg/8 hrs dosing be adequate??? My blood pressure has ranged from 89/54 to 115/60. I’ve routinely experienced dizziness on standing. Now that I’m drinking more water, I’m doing MUCH better. GOOD HYDRATION is critical! |
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Aussie Barb Research Team 
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Dave Welcome to Mino forum and thank you for posting your details. very helpful.. You will know yourself by your symptoms level, if you can extend your Benicar schedule. You are reporting a high level of symptoms. How does Benicar work? Why is it superior to other ARBs? Should I take it every six or eight hours? In your Benicar forum you have posted that you havent covered all windows.. any natural light exposure will exacerbate symtoms. Diligent light avoidance will also help to minimise your symptoms.. I strongly encourage you to take more Benicar to minimise your symptoms when required.. Tolerable is the key to safety and efficacy.. Adjusting your meds will help you to gain valuable experience that you do need to have as you proceed thru MP. The first recommendation to minimise symptoms. If your Dr agrees: to minimise symptoms at any time, or if going out - as well as protecting from light, you can take an extra half tablet (20mg) Benicar any time during the cycle, or adjust the dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief.. The mino, by your reported response, seems to be potent. Not all experience the immunopathology strongest on the 2nd day.. some do, as you have experience it strongest on the first day.. It is important that you report the details as this is helpful to Staff and others. Thank you. The aim or the key is for you to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of your meds dosing and schedule as suited individually to you within the guidelines. Why am I dizzy? again - light can increase all symptoms.. Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself. : Lay low, stay in bed, drink adequate fluids, eat salty foods and wait for the symptoms to wane. Checklist: basic links for MP What precautions do I need to take when I am going out or when traveling away? Phase One is the training ground for getting the feel of your immune response, your symptoms - and for gaining personal experience in managing all aspects of MP. ie eg including adjusting your meds, avoiding light and D and etc.. Please check all precautions / instructions in the Phase One Guideline with your Dr. Some have it printed to check with regularly. It is very important that you and your Dr know to follow the essential aspects and guidelines as written for safety and efficacy of treatment.. It is the patient's responsibility to see that the prescribing doctor is following the MP correctly. Letter of introduction for your MP supportive doctor Make sure of diligent light avoidance, adequate Benicar, pain control, rest, relaxation, and hydration, nourishment etc.. Tools to check: Rest is a very important part of managing and healing.. By being pushed to the limit of the tolerable immune response our body is working to capacity. Please post your Details required, and also the further details required into your signature line to help Staff and others reading and replying < see this link for details to include. Your details enable us to assist you. There is a limit of 255 characters, and some information needs to be abbreviated. Thank You .. Extra tips: Regular posting and reading on the Board have been found to maximise the chance of success.. Downloadable MP Documents These Quick-Scan Tracking Charts may be helpful to you Having a dosette and reliable alarm system. always carry spare meds with you. MP meds are at the top of your post. thank you. We are happy to assist you in any way we can.. Let us know if you have any questions. all best, Barb ... |
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davbrkr Member in Phase 3
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Second Post Day 15 of Phase I Benicar: 40 mg Q6H Minocycline: 25 mg/48 hrs. Other Meds: Alprazaloam, Soma, Flomax I am still having a stronger inflammatory/Herxheimer response on the first day of Minocycline administration than the second day. Sunlight exposure, even with protection (NoIR’s, zinc oxide sun block, long sleeves) triggers fatigue, headaches, RSD burning, but there is a noticeable abatement in symptom intensity and duration. I haven’t been able to fall asleep without Soma since starting Phase I. The “fall-asleep” switch isn’t working. Overall, things have improved, moderately. Panic attacks have been reduced to brief periods of anxiety/agitation over the past 10 days. Will I need a "25, D test" to move on to the next phase when the time comes? If so, this is something I will have to bring my Doctor "up to speed" on. He's willing to help, but too busy so far to get fully engaged. Incidentally, I referred a very sick acquaintance to the Marshall Protocol website. She has serious RSD pain, and answered "yes" to ALL 30 of the most common Lyme disease symptoms. She ended up with a Colorado physician who said he does the MP, but elected instead to put her on another protocol which includes HUGE amounts of vitamin D. You probably hear stories like this all the time. I obviously do not have the medical standing to question her doctor's judgement. Can you suggest anything I can do to help her in these circumstances? |
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Foundation Staff . 
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You can encourage your acquaintance to post on this study site so we can help her understand the difference between protocols that merely palliate and the MP which offers a cure. If she cannot or will not do this or if she does not change to a doctor who follows the MP, there is nothing you can do but offer emotional support. Sadly, this is an all too common scenario. |
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Aussie Barb Research Team
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Dave 25D test before phase two is recommended. Thank you. The first recommendation to minimise any symptoms. If your Dr agrees: to minimise symptoms at any time, or if going out - as well as protecting from light, you can take an extra half tablet (20mg) Benicar any time during the cycle, or adjust the dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief.. all best, Barb ... |
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davbrkr Member in Phase 3
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Third Post Day 23 of Phase I Benicar: 40 mg Q6H Minocycline: 25 mg/48 hrs. Other Meds: Alprazaloam, Soma, Flomax Coincident with the addition of Minocycline to Benicar-only, I developed serious neck and upper back pain, issues that had previously never been more than intermittent and minimal at best. They have persisted until the past three days and, although still present, have been demoted to a minor annoyance. Except for intermittent fatigue, and difficulty falling asleep, my herx/inflammatory reactions are minimal following my 25 mg Minocycline doses, so without objection, I’m going to increase my Mino dosage to 50 mg every-other day. I took a 6 1/2 car trip from the Phoenix area to visit friends in Las Vegas this week. I did fine during the “very sunny” car trip (hat, 2% NoIR’s, long sleeves, sun block). After going to bed at the usual time, I was “down and very sick” for the next 24 hours. The sun exposure may have beaten me up badly. On the return trip two days later under similar circumstances, I suffered nothing more than heavy-duty fatigue. Thanks for the help and encouragement of volunteer medical staff and others who are sharing their expertise and experience. In all its forms, this is a terrible disease suffered by people, who all too often are isolated and without hope. Friends and family do not understand why we just don't: "get a life”, and there is no real help from the medical profession. |
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Aussie Barb Research Team
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Thank you Dave see the Back pain link in PAIN CONTROL thread. Good to see you are managing well. all best, Barb .... |
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davbrkr Member in Phase 3
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Fourth Post, Day 34, of Phase I Benicar: 40 mg Q6H Minocycline: 50 mg/48 hrs. Other Meds: Alprazaloam, Soma, Flomax Upper back (T7) and neck pain are present, but improving. As you may recall, these symptoms had advanced from infrequent to persistent in Phase I of the MP. I’ve read the links of back problems. Thanks! Serious immunopathology which was more pronounced in the first 24 hours while on the 25 mg dose of Minocycline has shifted to day 2 on the 50 mg Mino dose. Since it has been suggested that Minocycline’s antipathogenic properties increase as the antibiotic load approaches zero, an immunopathology/herxherimer shift from day1 to day 2 following a dosage increase from 25 mg to 50 mg makes sense. At the higher dose, it takes longer for the medicine’s concentration to approach zero where it’s more effective. Although overall back pain is lower than in decades (4 back surgeries), fatigue is the worst I can ever remember. Because an extra 20 mg sublingual Benicar tablet helps so much, I have not resorted to extra Minocycline to deal with immunopathology so far. My “fall asleep” switch still is not working. Can’t sleep at night, but can in the late morning. I think that pattern is fairly common. I have suffered for decades with chronic fungal infections. Over the past three months it has approached crisis levels. I have thrown everything at the condition I could think of - every known over the counter anti-fungal, topical and oral prescription meds, home-make concoctions using herbs, thuja cedar sap, many types of topical colloidal silver solutions and creams including sitz-baths, and combinations of all of the above with and without mild chlorox solutions. Nothing has worked for very long. Fighting this infection takes up to 4 hours per day, an overwhelming task for someone who is sick. Because my wife of almost 49 yrs has never been infected, it would seem that my immune system is simply too compromised to “get into the fight”. This may be premature, but over the past 5 days, things have improved???? I’m hoping my immune system is starting to “wake up”. Like many others, I love cheese. Because of the vitamin D, issue I am avoiding all cheese. However it has occurred to me that some cheeses may not have added vitamin D. Feta, for example - one of my favorites - is made from goat’s milk, and may not have vitamin D. Does anyone know if there are imported cheeses that are vitamin D free?? Since few people will read this far down my thread, is this a topic that I could post elsewhere as a question where it will get a wider viewing audience? |
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Aussie Barb Research Team
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Dave Thank you for your details. You are managing all well, and is good to see your fungal infection is finding some improvement. see some further tips here. I've developed an itch/ a rash. What should I do? you can eat cheese: see Dairy Products for details. DAIRY questions & suggestions You may wish to keep some extra benicar and water bedside to minimise disturbance thru the night and to assist going back to sleep. If antibiotics are effective at very low doses, why do we ramp up the dose? I have insomnia and fatigue. What should I do? all best, Barb ... |
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davbrkr Member in Phase 3
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Dave in Phase I: http://marshallprotocol.com/forum20/9762.html 1 mo-17 days on Phase I Benicar: 40 mg Q6H Minocycline: 50 mg/48 hrs. Other Meds: Alprazaloam, Soma, Flomax An interesting 2 weeks since my last post. I have had the best single day in 10 yrs or more. Not only were overall pain levels generally WAY down, but I experienced enhanced neurological abilities that have been absent to long that I had forgotten they ever existed. For years now when I move my head quickly, there has been a slight delay before my eyes refocus. That delay vanished, at least for a few hours. When backing up a car, no matter how many times I look in the three mirrors, I cannot form a single image of what it looks like behind me; so backing up has become an anxiety event. I could do it for a while. The abilities are gone again, but to paraphrase Arnold: “They’ll be back.” On my good day, I was “out-and-around” for three hrs shopping and doing “stuff” that needed doing. There is no question that I had too much sun exposure, and overdid things. Back pain which has kept me in bed off-and-on for decades was minimal on my “GOOD” day, but punished me the following two days. That’s a familiar pattern. Overall my back pain is down noticeably. Fatigue at times has been some of the worst I can remember. Immunopathology is now routinely on the SECOND day of the Minocycline cycle - actually quite predictable. 20 mg of sublingual Benicar helps. I have a long ways to go but am encouraged. |
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Aussie Barb Research Team
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Thank you Dave, Good to see your improvements.. all best, Barb ... |
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Anne Scott Member in Phase 3
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Hi Dave, I read your posts with interest, because I live in Arizona and have Lyme Disease as you do, but am about a month behind you in treatment. I was encouraged to see that some of your symptoms (weakness, pain, fog, etc.) have been abating somewhat. (I just posted something on the benicar/mino forum to ask how long these symptoms might last, since mine have been fairly profound, even on 25 mg. of mino every other day). I too may have to order my meds from Canada (if Blue Cross doesn't come through) and would appreciate knowing what company you order from..). Thanks. Anne |
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davbrkr Member in Phase 3
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2 mo. – 18 days in Phase I Benicar: 40 mg Q6H Minocycline: 50 mg/48 hrs. Other Meds: Alprazaloam, Soma, Flomax Supplements: None Current Symptoms: Flu-like – mild fever, diarrhea. Neurological – burning, electrical, extreme fatigue, brain fog, poor concentration, mild but frequent panic/anxiety attacks, anger, sleep disorder, tinnitus, floaters, sound sensitivity. ALL TOLERABLE, BUT PERSISTENT for the past three weeks. Symptomatically, this represents a slight downturn, and a flat, no-progress period. “Is there a simple way to determine if a Benicar/VDR blockade is in place?” I have two reasons for asking the question! Reason #1: My recent $550 shipment of Benicar from a Canadian pharmacy arrived at my home in Arizona on a day when the temperature hit 116 F. Inside the mailbox it was much higher. I was gone, and did not return home until evening, so the medication sat in the mailbox and baked all day. When I called the pharmacy to see if they knew anything about the heat stability of Benicar, their chemists could only tell me that the product hydrolyzed, and should not be stored in the refrigerator. So the bottom line is: I have a three months supply of Benicar, and I don’t know how good it is, or if it’s any good at all! It would be most helpful if there were a way to test its effectiveness before I buy more since $550 is a lot of money at my house. Thinking that the “questionable” stuff may be at something less than full potency, but still of value, I’ve been alternating good Benicar with the “cooked” stuff, and did well for a while. However, the last couple of weeks, I’ve fallen off a cliff – two weeks now of the most serious, mostly neurological immunopathology (panic attacks, RSD burning, extreme fatigue) since starting the Marshall Protocol. Now I’ m wondering if my every-other dose of “tainted” Benicar is not working, AND IF I’VE LOST MY BENICAR BLOCKADE. I acknowledge that my turn for the worse may have nothing to do with my Benicar at all, just an unexpectedly difficult time in the course of a normal healing curve. My understanding of the Benicar basics as it parks itself on the VDR is that it does at least three things. (1) Blocks conversion of 25,D to 1,25 D. (2) Reduces inflammatory Angiotensin cytokine cascades, and (3) Lowers blood pressure. Since the same VDR block accomplishes all three, then I’m wondering if establishing an average blood pressure baseline on “good” Benicar over a period of – let’s say - a week, and then comparing it to a similar period using “questionable” Benicar would shed any light on the issue. In other words: “Can average blood pressure, or more correctly, a change in average blood pressure give one any insight into whether or not the Benicar blockade is in place?” This is just one thought. There may be a better way. Reason #2: My question, “Is there a simple way to determine if a Benicar/VDR blockade is in place”, really has a much larger, and much more important context. Without the unlimited resources of a pharmaceutical firm with a staff of PhD biochemists who have little better to do then answer questions like this, when any of us asks a question on a forum like, “Can I take vitamin C during my Marshall Protocol?”, the answer is understandably, “No – do not take any supplements or combine the MP with any other protocol”. I hope this does not sound like a criticism, because it is not meant to be. Unlike the government, I understand that resources have limits, be they in people, time or money. The MP is the result of brilliant work, and almost incomprehensible persistence. I cannot image Dr. Marshall battling his way, not only through the medicine and biochemistry of this protocol, but living through the pain and the doubts that were surely part of the journey. To whom did he post his questions? There had to be times when he lay awake at night in pain, and had doubts! In large measure, it’s a tribute to just plain toughness. Because I work for a physician as a patient liaison with his very sickest Th1 patients, I talk to one or more patients daily. At times, some are in so much pain that they cannot even speak legibly. As the doctor has pointed out to me, in an academic setting one can say anything about pain and suffering, but patients in agony, desperately seeking help from their physician are looking for more than: “No” or ”Just stay in bed and stay the course”. Let me put the question of: “How can one tell if a Benicar/ VDR blockade is in place”, in a broader context. To make this as straightforward as possible, let me use a personal illustration. I have a fungal infection piggybacking on a Th1 crippled immune system, and I know I can manage the condition with an inexpensive supplement – TriMethylGlycine (TMG) – a methyl donor. For all I know, this fungal infection is not a fungal infection at all, but is a cell wall deficient infection, and part of my Th1 disease. The same TMG has completely cured my GERD (Acid Reflux disease) after 17 years of suffering. For my “fungal/CWD” infection, TMG worked after all the over-the-counter anti-fungal preparations and expensive prescription medicines like Diflucan had become totally ineffective. It’s also worked consistently for others to whom I have recommended it. What I do know for sure is that at times this infection is worse than all other Th1 symptoms combined, and on the Marshall Protocol, TMG like all other supplements is off limits, so the infection has me by the throat again. Forget itching! If I walk very much at all, the skin in the groin area not only weeps blood, but tears and bleeds. The intense pain and distress trigger panic attacks. What I have discovered is that invariably, those of us with “incurable fungal infections” have severely impaired METHYLATION. Methylation in simplest terms means either adding or removing a methyl group to another molecule. Adding usually turns a gene or enzyme on. Removing a methyl group does the opposite. When methylation doesn’t work well, one cannot effectively repair DNA or make adequate quantities of melatonin, seratonin, peptides and proteins including antibodies, CoQ10, glutathinone and hundreds of other important compounds. Those like me who have high homocysteine levels are “under-methylators”, because our ability to add a methyl group back to this nasty amino acid and recycle it is impaired. My homocysteine has been high forever, and totally unresponsive to the usual fix - vitamin B supplements. It would not surprise me if most Th1 victims were “under-methylators” as well. “Under-methylators” (homocysteinuria) are also subject to out-of-control fungal infections, and intractable itching. By simply adding a methyl donor supplement, some sufferers have actually had untreatable fungal infections and/or itching controlled in days after powerful anti-fungal drugs had failed completely. If one is a Th1 sufferer on the Marshall Protocol who it itching from head to foot or suffering from a fungal infection that requires a periodic blood transfusion (over stated) it would be nice to know if an inexpensive methyl donor that does NOT interfere with the Benicar/VDR blockade could provide some relief, or if my overheated Benicar is any good!!!! Since folic acid is a methyl donor, it is clear that all methyl donors do not automatically get a pass on the MP. Someone, probably Dr. Marshall, figured this out so a method exists to know which molecules do or do not interfere with Benicar’s VDR blockade. But is there a simple way to make this determination? I also know that if I were about to be thrown into an arena where I had to face a hungry lion, and were asked whether I wanted a sword or a shield, there is only on rational answer. BOTH! I have no intention of giving up the MP. I’m betting the farm of the fact that the MP is my passport out of the dark and foreboding place where I’ve spend most of my life: “More afraid of waking up in the morning than dying in my sleep”. I don’t think a viable alternative exits, but because I know it works, if TMG is compatible with the MP, I want both. A quick check on the Internet will produce a list of methyl donors including methionine, SAMe, TriMethylGlyine (very cheap), DiMethylGlycine, etc. The same methyl donor does not work for everyone. One size does not fit all. If there were a simple way to test for the efficacy of the Benicar/VDR blockade, then a supplement could be tried for a few days, and abandoned if it upset the Benicar/VDR blockade. I know what I am proposing is “throwing mud at the wall to see if anything sticks”, but people in pain are pragmatists. We are willing to try anything that has any chance of helping. To restate the question: “Is there a simple way to determine if a Benicar/VDR blockade is in place?” It’s an important question because if there is, then the door is opened to other things that might decrease the interim suffering while the MP does its magic. Your thoughts will be appreciated. |
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Foundation Staff .
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Thanks for checking in..........To maximize safety, protocol efficacy and chance of success, we expect inexperienced members (even those who think they are doing well independently) to post in their progress report weekly so Staff can catch any problems early and have details of past responses to be better able to assist you if you need help.  I'm afraid there is no way to tell if the Benicar that was exposed to heat is effective because there are too many variables in the picture to even judge by the simple standard of symptom palliation. Recommend you chalk it up to one of life's lessons and ditch the questionable batch.  We don't automatically prohibit all supplementation. If a supplement is not known to modulate the immune system and proves effective for an intolerable symptom, it is okay to take it. It is also okay to supplement a known deficiency. Please see Why do I have to stop my alternative treatment and avoid most supplements? I'm sorry you've been suffering and we hope to hear from you more often..... |
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MarkN Member in Phase 3 
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If I miss my 8-hour Benicar dose by even 15 or 30 minutes, I can really feel it. But maybe that's just me. Also I did a quick forum search, and found that Joyce Waterhouse reported taking TMG, and she has done pretty well on the MP. So maybe it is OK. It's too bad that figuring these things out is so complicated .... |
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jcwat101 Research Professional 
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I did take it the first year and very rarely later. I don't know that it did anything one way or the other. Joyce Waterhouse |
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davbrkr Member in Phase 3
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3 mo. –4 days in Phase I Benicar: 40 mg Q6H Minocycline: 50 mg/48 hrs. Other Meds: Alprazaloam, Soma, Flomax Supplements: None Current Symptoms: Fewer flu-like symptoms since last post. Intermittent itching, poor sleep, mild panic attacks, neurological symptoms similar to last post, 3 days of worst RA-like pain in joints of hands that resolved quickly. Major back pain! Except for back problems, overall symptoms have been fewer and less severe than the prior reporting period.. Discussion: I had planned to check in more often, but a week ago injured my back sitting down in a chair. I have been unable to stand, walk or get to my computer. Even crawling until today was beyond my pain tolerance threshold. Over the past 36 years I have spent an average of 20 hrs. or more per day lying down. I have hurt my back in more ways than I can count, but never sitting down. For a very long time I have suspected that my back pain behaved more like a disease than trauma. It comes and goes “at will” without warning. I can go to bed with little or no pain, and wake up with a backache. After 50 years, I still don’t know to protect myself against these crippling episodes. On a positive note, after 3 days of very severe joint pain in my hands, I’ve had my wedding ring on for 36 hours. I haven’t been able to do that for a year or more, so joint swelling in my hands is less than in some time. I have no idea how to resolve what I’ve just described. Before the back episode, my IP had been tolerable/stable long enough that I was about ready to increase my Minocycline to 75 mg. Until my back issue is resolved, I’ll hold off, and then evaluate my overall symptoms before going to the next step. |
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Foundation Staff .
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Thanks for a clear and concise report. Please check that your signature line is up-to-date (include only the initial 1,25-D and the latest 25-D). List routine measures to prevent sun exposure, sunglasses used and ongoing non-MP meds in your signature line. Describe your recent sun exposure (eg outside 1/2 hr daily) and recent need for non-MP meds in your weekly report. It appears you understand that back pain can be due to immunopathology. Dr. Blaney mentions that on the DVDs and it is discussed in How To Identify Immunopathology (Herx). You are right to wait to increase mino until symptoms have been tolerable at all times for a few days. After so many years you probably know this but.......When symptoms limit your activities, try not to stay in bed 24 hours. Rest in a recliner or on the sofa at intervals to change your position. Change positions in bed and walk as far as you are able to at regular intervals. Do gentle range of motion exercises to maintain some flexibility and strength. If your mobility is compromised, be sure you are safe when you move around. Ask for help, safety proof your home to prevent falls and equip your home with safety devices and aids for independent living. I'm glad you've had some improvement to encourage you....... P. S. Are you still taking the Cowden Herbs? |
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davbrkr Member in Phase 3
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3 mo. –8 days in Phase I Benicar: 40 mg Q6H Minocycline: 75 mg/48 hrs. Other Meds: Alprazaloam, Soma, Flomax Supplements: None Current Symptoms: Intermittent itching, poor sleep, mild, increasingly less frequent panic attacks, Serious tinnitus. Back pain is resolving slowly. Should be able to walk without a walker in next 3-4 days based on past history (40+ years). Discussion: My back doctor for the past 26 years is also doing the MP (so is his son -Lyme/Erlichia positive). Before either of us knew anything about the MP, the Doc had taken the position that one day I would “hurt my back” as I did 9 days ago, and not walk again without a 5th surgical intervention. I’m hoping our new insight into Th1 inflammatory effects changes that prognosis. With all other symptoms within tolerable levels, I increased my Minocycline to 75 mg three days ago. So far, so good! I am still wearing my wedding ring after 6 days, so the diminished joint swelling in my hands has held up for nearly a week. That’s after a year where I was unable to get my ring on. Still swimming daily after sunset (with my sunglasses), and have had the best swims since starting the MP in the last 3 days. In answer to your query about Cowden herbs, I took them for the recommended 6 months BEFORE starting the MP. They helped, but left me well short of complete resolution of all symptoms. Protracted sun exposure still “killed me”. IP after starting the MP made it abundantly clear just how short the herbal remedy had fallen. I have taken no other herbals since starting the MP although I did take TMG (Betaine HCL) briefly (3 ½ weeks) for a fungal infection, which although not completely resolved, is better. The TMG seemed to help. I will take it again, but only as a last resort. I have two brand new Rife machines, and have never used either. |
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Foundation Staff .
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It's good to know your back pain is resolving slowly. There is a discussion of back pain in this thread. Back Pain Do you know what your 25-D is? It should be in your signature line. Cowden Herbs can be removed as it doesn't help the moderators assess your current situation. Also, list routine measures to prevent sun exposure, sunglasses used and ongoing non-MP meds in your signature line. Describe your recent sun exposure (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday) and recent need for palliative non-MP meds in your weekly report. You seem to have a good handle on when to increase mino. During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. You will gain experience adjusting MP meds and using your personal tool kit to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs. Carry on..... |
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davbrkr Member in Phase 3
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Is there a forum other than my own thread where I can post a question that will get the widest possible viewing audience? Here are two examples. 1. A neighbor grows asian pears (about a buck apiece in the store), and except for the shape, may not be pears at all. I receive boxes at a time. Since pears contain chlorogenic acid and, in general, must be avoided on the MP, DOSES ANYONE KNOW IF ASIAN PEARS ARE OK? 2. CWD bacterial are usually cultured in a hypertonic (salty) medium containing agar, horse serum, penicillin, etc. One reference says if you remove the antibiotic, the CWD forms don't grow. CAN CWD BACTERIAL BE KILLED IN A HYPERTONIC SOLUTION? |
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Foundation Staff .
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If you cannot find a suitable topic thread in the general discussion forum, it's best to post questions in your progress report since the research team reads all the reports and we want to avoid cluttering up the general discussion forum with new topics. 1. It's fine to eat pears in moderation. If you are concerned, don't eat the skin. See Chlorogenic acid. 2. What is the relevance of this question to the Marshall Protocol? |
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davbrkr Member in Phase 3
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3 mo. –11 days in Phase I Benicar: 40 mg Q6H Minocycline: 75 mg/48 hrs. Other Meds: Alprazaloam, Soma, Flomax Supplements: None Current Symptoms: No significant changes since last post. So far there has been no intensification of ant symptom since moving from 50 mg of Minocycline per 48 h to 75 mg. Because I have spent many days mostly in a bedroom on the north side of my home, I’ve had an absolute minimum exposure to sunlight. As a consequence, there has been a NOTICEABLE reduction in neurological symptoms. Discussion: Taking you suggestion to heart, I have spent more time out of bed in a recliner in the past few days. Back pain resolving slowly as has been the case for decades. I am doing some limited walking with a brace today for the first time since the most recent “injury”??? Like several others, back pain was my only noticeable Th1 symptoms for 15-20 years. When others began, however, symptoms like seizures and many others followed quickly. Since the premise of the MP is that CWD bacteria cause our diseases, I assumed that no question about them was out of bounds - even one about hypertonic solutions! Sorry! The staff does a great job, and I appreciate everyone’s effort. I have a friend who was diagnosed 11 months ago with ALS, and despite by best efforts have not been able to make the case that he should look into the MP. He is much worse in the interim. Instead he spent a lot of money on stem cell therapy which did nothing. Part of the problem may be that he is now simply be too sick to do much of anything for himself, and part of the problem is that I have not been able to find enough positive ALS/MP information to pique his interest. Since ALS infections seem to move faster that most other Th1 diseases, I was just “thinking out loud” - wondering if hypertonic solutions might slow down the ALS freight train while the MP did its magic. I’ve ordered Dr. Mattman’s newest book, have read about culture methods of CWD bacteria, and found it unusual that the cultures I have read about so far generally required very salty media. That seemed odd because because salt has been used as a preservative for centuries simply because salty, hypertonic media kills most microorganisms with cell membrances, with or without cell walls. |
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Foundation Staff .
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Thanks for a clear and concise report. There are a few things you can do to make it an even better 'snapshot' of your current situation. Please list your ongoing non-MP meds in your signature line. In your next report, just list the palliative non-MP meds you've taken for the week. This gives us a better picture of current symptom severity. List routine measures to prevent sun exposure (NoIRs, covered up, sunscreen) in your signature line only. In your next report, just describe your sun exposure (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday) for the week. This provides a clue to the cause of any symptom increase. Rating your symptoms on a scale of 1-10 (1 meaning barely noticeable and 10 meaning 'call 911') is helpful. Rating them at their highest for the week paints a good picture of how you are doing since symptoms should be tolerable at all times. I'm happy to learn you've had some reduction in your neurological symptoms. It's important for you to find out what your 25-D is to see what impact it might be having on your immunopathology and make sure your vitamin D avoidance has been successful. Thanks for clarifying your interest in hypertonic solutions. As I understand it, in vitro findings seldom translate to in vivo. Your friend with ALS is understandably skeptical since our ALS cohort have not yet beaten their disease. ALS progresses rapidly so it is essential to begin the MP asap and to progress to phase 3 as quickly as possible. For some folks, it is, sadly, too late to treat their illness with the MP. See When the disease process is far advanced You are researching and learning about Th1 inflammation. Good for you........ |
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davbrkr Member in Phase 3
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3 mo. –17 days in Phase I Benicar: 40 mg Q6H ~ Minocycline: 75 mg/48 hrs. Other Meds: Bedtime only - Alprazaloam(1 mg), Soma(350 mg), Flomax(.4 mg) Supplements: None Symptoms Report: “0-10” scale with “0” least severe; "10" most severe.
I’ve tried to take your advice, and develop a symptom rating system. I am a little worried about the amount of space it requires since I’m aware that space on the Internet is a problem. I tried to put this in a table format using MS Word, but tables wouldn’t transfer when reviewed as “REPLIES”. Neither would Excel files. For my own edification, I think I’ll experiment with a spreadsheet that can be updated daily, averaged, and graphed over time. Back pain has been troubling this week again. I’m midway through my third week of crawling, and now using a walker. I’ve suffered back distress hundreds of times over the 52 years, but have never recovered so slowly in response to what seemed like a VERY minor episode. This should have taken no more than 7-10 days. This slow “recovery” has been like no other. Since back pain has been my most disabling, long-term Th1 symptom, I am wondering if my “odd” recovery this time has something to do with IMMUNOPATHOLOGY induce by the MP? Hope so! Otherwise I’m looking at a 5th back operation. To keep this episode in perspective, I’ve spent up to three years at a time totally bedridden with back problems. Since I haven’t been outdoors at all in the past week except after sunset to swim, there has been minimal paresthesia. Because direct sunlight exposure to uncovered skin produces an almost immediate sunburn-like sensation, I suspect that much of my itching, burning is related to sunlight exposure. I developed an itchy rash on my back shortly after the back injury, related I suspect, to lying in bed or on a reclinder on my back too much. Carbohydrates also stimulate itching, so I need to be more vigilant about carbs. The more I know about the MP the more optimistic I become. Thanks, everyone, for your help and hard work. |
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VEZ R.N. Health Professional
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Hello Dave, thank you for the thorough update. Back pain is tough to get through for sure and it sounds like you have more than your share of it. Your past surgery sites will be areas where immunopathology will be at the forefront. A good link for you to read is Back pain link in PAIN CONTROL thread: see Dr Greg Blaney MD wrote, regarding herniated disc. Could you clarify on your next post your daily sun exposure? You indicated you have not been outdoors in the daylight hours than contribute the increased itching on your back to sun exposure? Thanks Just as an added note re; your question on CWD's and salt. IMO if these organisms can live in the part of the WBC,s where specific acidic/corosive compounds are maintained in order to destroy invading microorganisms, then they must also have mechanisms to adapt to other normally corrosive environments like sodium chloride. Continue maintaining good nutrition, hydration, sun avoidance, rest and good range of motion by VEZ  |
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Toni D Moderator 
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Hi Dave, I've just reviewed your thread from the beginning and want to encourage you to hang in there. Seems you're making recognizable progress, even with the recent back challenges .I do have one concern though and that is the amount of your daylight/sunlight exposure. I read where your office is completely darkened, but then read where all other windows have shades, except for the kitchen. The mere fact that there are unprotected areas in your immediate environment may lead to some of your IPRs. I heard it said on the site [paraphrased] that if a plant can thrive and grow in your home there is too much natural light. Please check that area as a possible offender. You can always purchase a Lux Meter to ascertain how much artificial lighting is present. Artificial lighting is acceptable at 30 lux over natural lighting. Attached below is a link for you to review. I realize you've probably read it already, but it's just a friendly reminder. There's info about lux meters in the link also. Okay? Feel good. http://www.marshallprotocol.com/view_topic.php?id=7756&forum_id=2&highlight=lux+meters Last edited on Sat Nov 10th, 2007 14:20 by Toni D |
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davbrkr Member in Phase 3
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3 mo. –25 days in Phase I Benicar: 40 mg Q6H ~ Minocycline: 75 mg/48 hrs. Other Meds: Alprazaloam(1 mg bedtime), Soma(350 mg bedtime), Flomax(0.4mg bedtime) Supplements: None Last Report: 7 days ago. Symptoms Report: Scale: “0-10” with “0” least severe; "10" most severe. Score is HIGHEST “IP” for reporting period.
7-8 years ago, I experienced a medical crisis initially diagnosed clinically by 4 different doctors as a Pheochromocytoma based: (1) stomach pain = kidney stone attack, (2) incapacitating headache, (3) and BP=290/150. Radiological examines of adrenals and spine, however, were negative. My family doctor, an internist, concluded that, for unknown reasons, my adrenals were releasing huge amounts of adrenaline inducing extremely high BP, and seizure-like episodes. Describing the original crises further: On three consecutive days I experience similar “attacks” in (1) the hospital emergency room, (2) the doctor’s office the following day, (3) at home the next day. In each case the intense, immobilizing pain lasted approximately 1 hour. Having been diagnosed with Polymyalgia rheumatica, I had been on Prednisone at the time of at least a year. Nov 12: Between then and now, I’ve had a couple of isolated, very minor episodes like this, until Monday Nov 12 when I had another severe attack starting around 3:00 PM, and lasting for approx. 1 hour. As soon as the pain subsided, and I could sit up, I tried to check my blood pressure twice, approx. 10 minutes apart, and couldn’t get a reading. My BP cuff only measures systolic pressure up to 240. 30 minutes later my BP was 158/95, awfully high for someone on a quadruple daily dose of Benicar. Recently it ‘s typically been: 100/65 +/- 10%. Nov 13: The next morning I had 2 similar, minor episodes at 2:00 AM and 10:30 AM, each lasting not more than 20 minutes. Reaching maximum intensity in 2-3 minutes, for the most part, these seizure-like episodes come on with no warning. Nothing seems to moderate them. That same evening at 11:30 PM, I had a fourth minor episode, the third of the day, lasting approximately 15 minutes seemingly triggered by getting up to use the bathroom, and get a drink. No 14: I had a doctor’s appointment. Travel time each way is 30 minutes, so I had an hour’s sun exposure outdoors - mostly in the car (Long sleeves, pants, hat, 2% NoIR’s). Since “injuring” my back (I don’t believe it’s as simple as an injury) that’s the first I’ve been outdoors during daylight hours in more than two weeks. Sun exposure this time seemed to trigger a higher level of RSD type “burning” on the skin than anything I’ve experienced for several weeks. About 6 hrs after returning home, a dull headache developed lasting until I finally fell asleep at approx 1:30 AM. I’ve felt worse than usual since the Dr.’s appointment - RSD symptoms, panic attacks - sunlight exposure perhaps? Today: Nov 17, I had a minor “tweak” to my back “while standing up” even though I was using a walker for support (30 days now using a walker). My back is as fragile as it has been in at least 4 years. I can never remember recovering this slowly from a trauma event this minor. I’m beginning to suspect, that because of the long duration of my illness, getting well is going to be harder than I could have imagined. By the same token, I have made progress already. I can still get my wedding ring off and back on - 22 days now - so my joints are better. |
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VEZ R.N. Health Professional
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Thank you for the update Dave. Sorry to hear you are experiencing increased immunopathology symptoms. Be sure to monitor your symptoms closely as well as your BP. It is not surprising your immune response is centered around those areas affected most by the Th1 inflammatory disease. It does sound like you are making strides to handle your symptoms well. You did not mention whether you tried extra Benicar for the hypertensive episodes, many times if Dr. agrees, 20mg of Benicar in between your dosing schedule or benicar q 4hrs for increase immunopathology can help. Benicar is not considered the first drug of choice for severe hypertension, usually doesn't lower BP more than 12mm of mercury or so regardless of the dosage. BP fluctuation is very common with those who have Th1 inflammatory disease, however if you continue to have episodes of severe hypertension you may need further medication to normalize. Could you describe your "seizure like" symptoms for clarity? Thank you. Hang in there, VEZ |
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davbrkr Member in Phase 3
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SEIZURE-LIKE DESCRIPTION per request: The seizure-like episodes, according to my physician(s) at the time mimic the symptoms of a Pheochromocytoma adrenal tumor incident, but examinations for that tumor were negative! Taking no more than 2-3 minutes to reach maximum intensity, they come without warning, and can occur at any time of the day or night. In other words, if there is a triggering even, I don’t know what it is. The symptom sequence is:
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Foundation Staff .
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Thanks for the clarification. Those episodes sound very dramatic. Is natural light exposure a factor in symptom exacerbation? It's fine take 40mg of Benicar as soon as you feel an 'aura'. See Evidence that taking Benicar at MP recommended doses is safe Hang in there......... |
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davbrkr Member in Phase 3
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My wife was diagnosed with Lyme disease (positive IgeneX Western Blot titer) the same time I was. She had back and joint pain, Bells Palsy, etc. For 6 months, we were both on a combination of oral Doxyclycline and Flagl, alternating every 10 days, PLUS an herbal protocol (Samento, Cumanda, Quina, Carnivora, etc). She was symptom free at the end of the protocol. I was better, but still pretty sick. I DO NOT THINK SHE IS WELL despite the fact that our LLD has declared her “cured”. There are still some minor, but suspicious things slowly reemerging after 4 months. I’ve been reading about almost nothing else but Lyme/Th1 disease for the past year and a half, and am beginning to doubt that anyone gets truly well on any protocol that ignores CWD bacteria. Our local LLD (doc) who also has Lyme disease, and is treating 300 patients with that diagnosis, has been on IV Rocephin, IV H202, IV vitamin C, IV colloidal silver, HgH therapy, and a multitude of supplements, and is still not well after nearly 5 years (brain fog, RSD burning, back pain, etc). So far, I am his only MP patient. He is a man of the highest integrity, and if I do well, there will be many others, I’m sure. My wife has agreed to do a MP therapeutic probe for al least a month looking for immunopathology, and any change in sunlight sensitivity. Since she has been on Benicar with hydrochlorothiazide for years for slightly elevated blood pressure (covered by insurance), can she use her current Benicar prescription with hydrochlorothiazide for ONE of her daily Benicar doses, and Benicar only for the remainder? A physician friend, Dr E., on the MP himself, called me a couple of weeks ago from this year’s ILADS annual conference in Boston midway through the seminar. Although most attending physician-participants acknowledge that Lyme has a CWD/L-form, discussion about CWD bacteria was almost entirely absent, at least midway through the weekend. One speaker, without being too specific, talked about the possibility that Lyme may have another intracellular form, but no remedy was proposed. It sounds like ILADS docs diagnose all Th1 disease as Lyme disease. Their protocols address spirochetes and cysts only. With all the persecution suffered by LLD’s across the country, I should think ILAD’s doctors would be enthusiastic MP allies, but Dr. E’s report makes me wonder. Are ILADS doctors just wearing a smaller set of blinders than the rest of the medical community? |
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Foundation Staff .
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Are ILADS doctors just wearing a smaller set of blinders than the rest of the medical community? That seems to be an accurate assessment.........  If your wife wants to use up her supply of Benicar HCT and she is sure her kidneys are in good shape, it's probably okay for her to take one Benicar HCT a day. She should make sure it's okay with Doc and monitor her B/P. Please ask her to join the site, take ownership of her treatment and post progress reports. We'd be happy to assist her..... |
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davbrkr Member in Phase 3
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[15 days] · Ben Only] || [4 mo, 2 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg) Symptoms Report: Scale: “0-10” with “0” least severe; "10" most severe. Score is HIGHEST “IP” for reporting period “Capital letters - most troubling in group. Each evaluation starts with a blank template to minimize the influence of previous scoring.
On a regular monthly basis, I see my doctor, who although he is willing to help, has not yet fully engaged the MP. Each month I provide him with a 1 page written MP progress report. He not only asks questions, but takes notes as needed. Because of my recent “back problems” and “seizure-like” episodes, he kept me in the exam room for nearly two hours on my last appointment, and gave me a thorough going over. IMO, his willingness to help me with the MP is motivated by the following.
There have been no more seizures this week - hurrah! About 8 years ago, after seeing an internist, two rheumatologists, a cardiologist, and a GI doc, I was given 3 months to live. After having all applicable tests, no one could find any reason for my life threatening arrhythmias. Because I had figured out on my own, as usual, by pouring through the medical literature that my symptoms matched those suffering from either (1) mercury toxicity or (1) Lyme disease, I raised these two possibilities with each of the physicians. My “audacity” was met with derision at worst - silence at best. Nevertheless, all including my dentist assured me that mercury amalgams were completely safe, and the docs told me Lyme was rare, and easily treated with oral antibiotics. None prescribed an antibiotic. Since it was obvious that no one was going to do anything, and because I was the one dying in 90 days, I did the only thing I knew how to do. Over the general objections of my “medical experts”, I had my amalgams removed. By the time all mercury fillings had been replaced with composites -about 2 months, Pre-Ventricular Contractions (PVC’s) had dropped from an average of 30 per minute to 3-5 per minute, and although I was no longer in imminent danger of having a fatal heart attack, even after mercury chelation, I was still only about 40-50% better. Mercury, of course, is neurotoxic, and so is Lyme/Th1 disease. Since I had BOTH, there was no way I could separate one from the other. Although follow-up mercury testing eventually showed I was relatively heavy metal free, between then and now, my Th1 disease has completely dismantled my health again without any help from neurotoxic metals. The point of this is that I now find myself in a similar dilemma with respect to what is going on with my back pain. My back condition is unchanged from last week. No progress - still using a walker “very, very carefully”. I can stand unaided unless I straighten up completely. It’s the last 3-5% that’s the problem. Over the past 30+ years, I’ve had back procedures/surgeries for Superior Articulating Facet Syndrome (SAF), Spinal Stenosis, and multiple herniated discs. Only 1 of 4 operations helped much - the one for spinal stenosis. The other 3 + 6 more joint operations were a total waste of time and money. Even if my initial back pain was simply the result of Th1 infection, 4 operations later, after cutting, sawing, chiseling, fusing, etc. my back is surgically compromised if nothing else. So is my current back status the result of (1) structural problems or (2) my infection. or (3) both as the earlier mercury and/or Th1 dilemma? It would be very easy at this time to find a doctor who would operate again. On the other hand, if I just “hang in there” with the walker, and bed rest as needed, can I avoid another surgery? Please understand, I’m not looking for an answer to this question, but maybe someone else ahead of me in the Th1 healing process has gone through something like this who could offer some insight. |
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Foundation Staff .
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I don't recall anyone on the MP with anywhere near your extensive history of back pain and multiple back surgeries. You are pioneering the MP for this particular situation. Since you were given a death sentence 8 yrs ago and have seem limited improvements in that time, it is reasonable to assume that your Th1 inflammation is quite advanced. The MP has an excellent safety record but it is still an experimental treatment plan. Many folks who are very symptomatic or who have been ill for a long time are doing well on the MP. But you should know that if symptoms are extremely debilitating or vital organs are severely compromised, it may be very difficult or even impossible to tolerate the immunopathology involved in the healing process. Patients should be aware there is a rare possibility that immunopathology will provoke a serious adverse event, especially if the disease process is well advanced. I wish I had better news but you may have to wait a very long time before you see any improvement in your back pain. That's a lot to ask when we cannot offer a role model for you as proof of efficacy. I can understand if you would be tempted to have another surgery even though surgery has not been the answer before. You may have to adjust your expectations if you want to persist with the MP. I don't see that you are taking a lot of pain meds and this may be the only way to tolerate what seems to be significant immunopathology. I hope you can manage to hang in there..... |
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davbrkr Member in Phase 3
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Thank you for your detailed and thoughtful reply (11/24/07). I feel guilty taking up this much staff time, SO YOU NEED NOT REPLY TO THIS COMMUNIQUE. Prior to starting the MP, I did 4 other protocols for Lyme disease including oral antibiotics, and did feel 40-50% better. Although I knew I was not well, for the first time in 30 years I was able to walk on a semi-regular basis for as much as an hour. Because there were many times when I was bedridden for months and/or years at a time, this represented a HUGE improvement. Then 12 day’s exposure to the Hawaiian sun completely, “unraveled” 14 months of herbal protocols, and I was essentially back to ground zero. However, within a few weeks I had recaptured some of my gains, and was back to limited walking on an “as able” basis. In the past 15 years, I’ve read hundreds of books, and studied more than 30 other Lyme/Th1 protocols trying to figure out why I was so sick. Nothing else makes even remotely as much sense as the MP, so I’m going to do this if it kills me! Irrespective of how much money is spent, I no longer believe anyone cures a Th1 disease with antibiotics and/or supplement protocols. The re-emergence of back pain recently is coincident with the MP and its corresponding IP. On earlier herbal protocols I had minimal IP, and minimal back trouble. Since starting the MP, it is not unusual to go to bed with a back pain level of “2” and wake up, or be awakened by pain at “4-5”. Since the increase occurred while sleeping, there was no rational way to attribute the pain increase to trauma. I suspect IP, and although I hate not being able to walk unaided, IP is good, SO I AM NOT DISCOURAGED! The other possibility is that I actually need another fusion. Only time will tell. Strangely, this “back recovery”, or lack of it, is somehow “different” than any other adding to the argument for immunopathology. As a college athlete and aspiring Olympian, I trained each day by the axiom: “Pain is every champion’s ally. Embrace it”! I welcome immunopathology in the same spirit. I’ve also noticed a definite change in sleeping patterns. Instead of falling asleep belatedly without any sleep medication, awakening within 2-4 hours, and lying awake until sun rise as I have for decades, since starting the MP I’ve haven’t been able to go to sleep at all - not even once -without sleep aids! The “fall asleep switch” has stopped working. Though exhausted, I can’t even nap during the day. I suspect the sleep pattern anomaly is just more IP. A week or more ago, when I was having incredibly painful seizures, I’d already made up my mind that if I had to have them every day for the next 2-3 years, I’d find some way to get through it. Stuff happens, and although my back pain is worse, I have no doubt that I’m feeling better overall after only 4½ months on the MP. Of my three worst symptoms - panic attacks, RSD burning, and back pain, the first two are already minor issues compared to where I was when I started. While they dominated by fears just a few months ago, I rarely even think about them now, so I’m winning! Having long ago lost all confidence in the medical profession, like many other Th1 disease sufferers, I’ve spent years trying to find anything that would help. Because family and friends know I’m trying something new, the MP, and because I can’t hide a walker, my current disabling back pain is visual confirmation to all of just one more in a long series of failures. Although no one says anything, by now I know the “looks”, and sense the “unspoken” cynicism. I’m saying nothing, because I know something they don’t. I’ve started graphing my weekly symptom scores in an Excel spreadsheet, and despite setbacks, the overall slope is going DOWN! |
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Foundation Staff .
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Thanks for explaining. You surely have the right attitude.... You might enjoy reading what Dr. Blaney has to say on the subject. See How to lessen incapacity caused by immunopathology. |
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davbrkr Member in Phase 3
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[15 days] · Ben Only] || [4 mo, 11 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg) Worst Symptoms: Scores >=3 only to save space.
Although I’m still unable to get around without a walker, there have been no more seizures since my last post. In an effort to forestall another spinal fusion, for the past 3 years my back-doctor of the past 27 years (He’s also a Th1’er registered on the Doc-forum) has been doing a rhizotomy by injection every 6-9 months. The “RHIZO” kills the nerves. They then take about 6-9 months to regenerate. My back blew-up 9 months since the last treatment. I’m scheduled to have in redone in about 10 days if I can make it on the plane. Because Dr. E is Th1-literate, he also is reasonably sure that some indeterminate part of my back pain is IP, and WHEN I can eventually get past this disease, I may still get some mileage out of a painful back. Since my last post, nothing notable - some symptoms up, some down. Overall a better 9 days than the previous week. I continue to record my symptom progression using an Excel graph. I will work on a photograph. A friend gave us a small digital camera. Neither of us has ever used it, but I’ll see what I can do. I live in a retirement community of about 15,000 in 5 contiguous, affiliated communities (same developer). Since I’m walker-bound for a while at least, and I almost never leave my home to go anywhere during the daytime, my contacts are, for now at least, limited to the very small number of others who use the swimming pools and/or spas after dark. However, because most of us are 55-95, it seems like just about everyone I talk to has symptoms of Th1 disease, or know someone who does. Most have already been diagnosed with one the Th1 disease labels, and as is universally the case, are getting no help from even the most prestigious medical facilities. I’ve prepared a business-sized card, printed on both sides, with basic information about CWDB infection, their links to chronic disease, and the answer - The Marshall Protocol. I’ve also written up a more detailed 5-page description of my 40-50 year “journey”, basic information about autoimmune disease and infection, and sent it to nearly everyone on my E-mail address list including high school and college classmates. Encouraging anyone with a chronic health problem to go to the MP website, some have thanked me profusely. Others have passed the information along to family and friends. Although it will take some time, with free meeting facilities available in all 5 communities, as my progress and health allow, I' would like to make arrangements to talk to larger groups who need help. |
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VEZ R.N. Health Professional
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Thank you for the update Dave. Sounds like you are managing well in spite of the back issues. What a good way to communicate to others who have Th1 inflammatory diseases! It seems you are in a good place to have lots of support as well as the help you need. Hang in there and take good care of yourself. Best Regards, VEZ |
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davbrkr Member in Phase 3
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[15 days] · Ben Only] || [4 mo,26 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg) Worst Symptoms: Scores >=3 only to save space.
Does it make sense to report only symptoms that I assign values “>=4”, or is the “>=3” criteria OK? Tomorrow I travel to Oklahoma City to have a rhizotomy on my back. Today is my 50th day using a walker following what I considered a minor back trauma event. It just hasn’t “healed” this time as in the past following episodes of similar severity. IP is suspect. Because I experienced a fungal infection “flare”, I’ve temporarily used TriMethylGlycline (TMG) / (Betaine HCl) as a methyl donor, and as in the past it: 1. Seemed to help with the fungal problem within 24 hours, and about the same time, 2. My IP level increased. The same thing happened last time I used TMG. It may be nothing more than coincidence. TMG is something I will discontinue as soon as fungal symptoms are manageable. I tend to think of increased IP as resulting from doing something I shouldn’t like - too much light exposure, or the natural result of the immune system working better. |
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Foundation Staff .
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We understand your desire to get a grip on cutaneous candidiasis due to your previous history of extensive fungal infection. Please review The use of antifungals. See I need to have a diagnostic procedure/surgery/dental work. What should I know? Good luck........ |
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davbrkr Member in Phase 3
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[15 days] · Ben Only] || [4 mo, 26 days] · PhzI· Ben: 40 mg Q6H~Mino: 100 mg/2 days Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg) Worst Symptoms: Scores >=3 only to save space.
Overall, this is the best week since starting the Marshall Protocol, and that despite a day of travel to OKC from Phoenix with much more-than-usual sun exposure. Similarly, yesterday was the single best day in more than 5 months, while today has reverted to the usual “tolerable funk”. By now I know I have a long way to go to be well, but every lull in the storm is welcome. Even a temporary ray of sunshine in the perpetual blizzard that has defined my life for decades is welcome. I think I am getting better, VERY SLOWLY. By coincidence - OR NOT - my chronic fungal infection was at its absolute minimum in months on the same “best” overall day. Makes be wonder about the “fungal” component of my overall disease state?? Do I have a fungal infection piggybacking on a TH1 disease-compromised immune system, or is the “fungi” really just a CWD bacterium resident in the skin? |
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VEZ R.N. Health Professional
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Thank you for the update Dave. Good to hear you came through it all and have had some positive relief from pain. Nice you are able to get up and around again for sure. The progress we see along the way is so helpful in propelling us forward, glad to hear it. You have now seen evidence that the fungal symptoms are tied to the CWD organisms causing your Th1 inflammatory disease. Dr. Marshall wrote: "Maybe what was diagnosed as a 'yeast problem' is actually a problem caused by "those tiny, tiny bacteria, smaller even than yeast spores, called Cell Wall Deficient or L-forms. This link may help clarify, SEE: the section on Candida: Will the Marshall Protocol treat co-infections? CWD organisms have the capability to change to preserve life as their environment changes. Keep up the good work and hang in there. Best Regards, VEZ |
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davbrkr Member in Phase 3
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As of today, I have been on Phase I (Benirar Only / Benicar+Minocycline) for 5 months and 13 days. I took my 4th, 100 mg dose of Minocycline (Phase I) yesterday, and so far have noticed no IP differences between 75 mg and 100 mg dosing. I started the MP as a therapeutic probe without the benefit of initial D-metabolite tests. My physician talked to me by phone this evening, and said my LabCorp D-25 test came back at 20. Unfortunately, he has a contract for all testing with LabCorp. Perhaps there is a stealth Vitamin-D source in my diet, or my sunlight exposure is still too high (hard to imagine)! At any rate I’ve got lots of ground to cover to get to 12. Many of my most serious IP symptoms are neurological: seizures, panic attacks, RSD burning, brain fog, fatigue. I’ve had temporary “brownouts” episodes in the past so severe that I could not read or dial a telephone. I remember reading somewhere that the phase II antibiotic is more helpful than Minocycline for neurological symptoms. SHOULD I:
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Foundation Staff .
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Before you move to phase 2, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms. You could also try taking lower-dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit and could come in handy in the future if symptoms become intolerable and you need to adjust MP meds to manage immunopathology. You will have several antibiotic options as you move forward. The antibiotic that targets the brain and nerves may not be your best option because the immunopathology could be fierce. I think you can afford to stay in phase one a couple more weeks to do some valuable experimenting. Any lab can do a 25-D correctly, it's only 1,25-D that needs special handling. Stores of D will gradually drop and you don't need to wait for that to proceed. The second and third phase guidelines are available to study participants upon request at completion of phase one. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. Let us know how it goes........... |
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davbrkr Member in Phase 3
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[15 days] · Ben Only] || [5 mo, 7 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg) Worst Symptoms: Scores >=3 only to save space.
Yesterday, I went back to the 2-day Minocycline, 100 mg cycle. The Last 18 hours makes this the WORST day in 2 months or more with (1) mild panic attacks and (2) RSD burning. Neither has been intolerable - just persistent, and uncomfortable. I’ve had either one or the other off-and-on for most of the last 18 hours except during 5 hours of sleep. Waiting a little longer before going on to Phase II was probably good advice. I’m about an hour away from my regular Benicar dosing. Even thought my symptoms have not reached intolerable, if they persist, I’ll try Minocycline every 12 hrs later in the evening to see if it gives palliative relief. Noted |
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davbrkr Member in Phase 3
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[15 days] · Ben Only] || [5 mo, 14 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg) Worst Symptoms: Scores >=3 only to save space.
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Foundation Staff .
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One reason for your recent symptom flare could be a reduction in 25-D allowing your immne system to function better. The recommended first step when symptoms are intolerable is to take an extra oral 40mg Benicar immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly. Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster If intolerable symptom/s persist, increase oral Benicar to every three or fours hours around the clock (set an alarm if needed). Continue until symptoms are tolerable. During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose. It's good to know that adjusting mino is not effective to reduce immunopathology. Don't hesitate to increase Benicar as needed. Keep up the good work........... |
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davbrkr Member in Phase 3
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[15 days] · Ben Only] || [5 mo, 22 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg) Worst Symptoms: Scores >=3 only to save space.
As difficult as the pervious IP-posting period was, the past week was comparatively easy. I’ve retained the recent practice of staying in bed until 1-2 pm in a very dark bedroom reading and watching TV, and that seems to help. This week I blocked the master bathroom, and home-office windows with cardboard so one end of our home is very dark. I live like a bat at one end of the house in the dark, while my wife “lives in the light” at the other end. I’ve increased my after-sunset walking to 1 ½ miles per day for the past 2 days, and have started taking detox saunas after my swim each evening. I will see my local doctor (Doctor “K”) next week, and would like to have him order the meds for Phase II even though you may want me to wait a while longer before starting. It’s a long drive to his office in the Arizona sunshine, and after my next office visit, I don’t plan to see him again for 5-6 weeks. If I’m ready to start Phase II in the interim, I’ll have the meds, and can avoid another long trip to the doctor. I don’t know which of the MP-Phase II prescription meds to ask my doctor for. The Modified Phase II antibiotics with shorter dosing cycles are appealing since backing out is easier IF THINGS DON’T GO WELL. Since my most serious symptoms are neurological (seizure, panic attacks, RSD burning, irritability, depression, etc), that’s a consideration in choosing the right antibiotic, so here are some questions:
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Foundation Staff .
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Thanks for letting us know you are doing well on 75mg mino...... It isn't necessary to live like a "bat". 30 Lux is more like romantic mood lighting.  I'm not sure if you mentioned a sauna before.....be sure it isn't infrared. BTW, Dr. Marshall has stated there is no need for any sort of detox. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. We like to see folks go from phase one to phase two if at all possible. Keep up the good work................. |
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davbrkr Member in Phase 3
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I have been on 100 mg of Mino since Dec 14. Sorry for the confusion. I use a template with my meds and symptoms to start regular posts, and had not updated the Mino dosage to 100 mg. 100 mg produced little change in overall IP from 75 mg. 72 hr. dosing to increase IP DID NOT increase IP. 12 hr dosing with 50 mg DID NOT decrease IP. I have requested the MP questionnaire, and will see my Doctor next Thursday. Sounds like the questionnaire will let me know if I'm ready for phase II, and tell me what Phase II antiobiotic he should prescrible. Noted Moderator Note: Your phase 2 posts are in your progress report in the phase 2/3 forum for continuity. Please continue to post in phase 2/3 forum as the appropriate forum. Thank you. |
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davbrkr Member in Phase 3
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Alumni Update: [19 months, 18 days], ~ Phase 3, (Benicar Q6H + 20mg sublingual as needed) Worst Symptoms: Scores >=3 only to save space.
4 | Paresthesia: [BURNING, ITCHING, Electrical] 3 | Pulmonary/Lung [COUGH, congestion, shortness of breath, PHLEGM] 3 | TINNITUS) I’ve increased Minocycline to 75 mg so I’m at ¾ of the full dose of both “M” and “C”. Because my IP is nominal, I will ramp “M” to the recommended 100 mgs within the next two weeks as suggested. My severely neurologically impaired daughter has done very well for the first 8 days on the MP. All is well. After hundreds of hours reading the threads of other MP-cohort members, I would like to report an unexpected positive change that I’ve experience that I haven’t seen on other progress reports. Phoenix, AZ has the largest municipal park in the US - 17,000 acres with miles of hiking trails. Before starting the MP, on rare occasions when I could walk, I would go to South Mt. Park, and walk one of the shortest, easiest trails. Because of my poor health, I was never unable to walk often enough to get into shape. The first small hill on my trail of choice was no more than 50-60 vertical feet over a 150-yard ascent. Not much of a hill! To forego complete cardio-respiratory failure, gasping for breath, I would typically stop 3-4 times before reaching the “summit”. My head knew my effort was pathetic, but it was the best my body could manage. Others routinely walked past me some with that: “I wonder if he is OK" look? My first 8 months on the MP were difficult. 11-12 months after starting, on a day when I felt better than usual, I drove to the park, and took my usual micro walk, but this time, though totally out of condition, I walked easily to the top of my nemesis hill without stopping. Looking back down the hill from the top, I mused: “where did that come from?” In the same vein, I have an old “total gym” at home which I use whenever I feel well enough. Because every joint and muscle protested, I was never able to raise the incline above the half-way, “for ladies-only” mark. Because it’s so hot in Arizona in the summer, and because the exercise machine is outdoors in a “screened” room, I hadn’t used it for 8 months or more. A week ago, on a better than usual day, I dusted off the total gym. Starting at my old half-an-incline, I went through my usual series of exercises finding them unexplainably easy. I ended up at the highest incline - a place I had never been before. I’m almost 69 years old, and in terrible physical condition after years of illness. The only thing I’ve done consistently in the past 19+ months is the Marshall Protocol, yet for reasons I could never have anticipated, my heart, lungs, circulatory system, and muscle strength are all much improved without the benefit of a regular exercise program. |
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Dr Trevor Marshall Research Team 
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davbrkr Member in Phase 3
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[20 mo, 5 dys], ~ P3, (Q6H + 20mg sublingual as needed) Worst Symptoms: Scores >=3 only to save space.
3 | FATIGUE 3 | FUNGAL INFECTION 3 | Numbness [Arms, HANDS] 6 | Paresthesia: [BURNING, ITCHING, Electrical] 3 | Pulmonary/Lung [COUGH, congestion, shortness of breath, PHLEGM] 3 | TINNITUS) The return of Back Pain in my symptom summary is the direct result of carelessness on my part. Because I’ve experienced so little back pain for the past 2 months or more, after 54 years of torture, I did something, without thinking, I shouldn’t have. Now I’m paying the price. However, compared to past transgressions, this time the consequences, though uncomfortable, are slowly abating - spontaneously - something that didn’t happen in the past. Before the MP, once “down” I couldn’t recover without medical intervention, and then relief was fleeting. To some extent, I’m living with the same problem of PERSPECTIVE that other recovering TH1-sufferers have. Since I wasn’t well at 20, 30, 40, 50, 60, 68, I have no “wellness frame of reference” - not even a remote concept of how a well person my age should feel. When I look into my past for a glimpse back to a time when I was well, the debris field stretches so far, I cannot see the other side. I think I shall never sort this out, so I will have to settle for knowing the difference between “better” and “not”, and I am getting “better”. When I was 24, and had my first teaching job, there was a mountain to the east of the campus. Every day I drove into the parking lot, I looked at the top and vowed that one day, when I got well, I would run to the top. I never did either! But maybe I will walk there yet, and although that may not be a home run over the center field fence, it’s at least a triple, with a chance to steal home plate back from a disease “I never had”. Thanks to all who have helped me come so far. |
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