The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Experience of DaveW
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Experience of DaveW |
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DaveW Member
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from Experience of DaveW ..Hello (((Good Folks))), This is my first report since I commenced minocycline 12.5 mg/2 days on Aug 17 (after three days of benicar alone @ 120 mg/day). Today (Aug 22nd) I have ramped up to 25 mg mino. Herx: Considerable fatigue, concentration and depression problems (sometimes debilitating in combination). Minor transient aches, pains, headaches, stomach cramps, acidy indigestion several hours after mino, sore teeth and congestion. Sometimes feel warm, with cold shivers when I move quickly. BP is no problem - with lowest resting morning BP recorded at 88/51 with pulse 52. Normally, day time BP is closer to 115/65 pulse 60 (with fluctuations). Temp is sometimes elevated slightly. Other changes: Herx reactions seem to be decreasing. Sleep is sometimes very good and other times very poor (Circadian rythyms and HPA axis seem dysregulated). Eyes are more sensitive to light - I must be in a dark room with computer screen darkness set to lowest level to avoid headaches (with NoIR 40% fitovers on). Having occaisionally itchy skin is a first in many years (as that and a keen sense of smell have been gone for several years). Feet are cold - especially at bedtime (unusual for me). Still feel buggy and emotionally down 2 days after mino (just before another dose). Overall I feel more stable than pre-MP, but unsure if I will be able to work with current level of fatigue, concentration and depression problems - which were quite similar on benicar alone. Appetite is easy to control and I am losing weight (thankfully). Have lost 8 lbs (over about 4 weeks), and hope to lose 30 more. After years of researching my health peoblems to unveil the core root, I have great confidence in the MP (and feel it provides some key missing pieces to the puzzle). Keeping my eye on the prize will give me the courage to tolerate significant herx - as long as I can still function sufficiently to work. - DaveW |
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DaveW Member
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This is my third report since starting the protocol. Last week, I ramped up to 32 mg of mino, and experienced terrible frequent sharp pains on my scalp, and shortly afterwards in my lower jaw. I had a bad infection for two or three years in my (impacted) wisdom teeth before I got fibromyalgia. Ever since I had these teeth extracted, I have had frequent sore tissue behind my last tooth (bottom left side), as well as frequent bad tastes and odours coming from the same location. After the 32 mg of mino, it took four days for the jaw and head pain to stop. I then took 16 mg mino (half the dose). It caused sore lymph nodes under my chin, a sore throat and very sore teeth (mostly left side bottom row), as well as a swollen tongue and sores on the left side of my tongue (that sometimes make it hard to talk). It has been four days since my last 16 mg dose of mino - and these symptoms are persisting and strong. I had these symptoms extremely frequently during the first couple years of my fibromyalgia. Later. Moderators Note: These low Mino doses are no longer recommended. Other herx symptoms include fatigue, difficulty concentrating, memory problems and depressed moods. It is obvious to me that the mino are routing out some infection in my jaw (which does my heart good). The only problem is - if my tongue swells up too much (or becomes too sore), or if my concentration & memory becomes too disrupted, I may not be able to work. I think I may have to take mino on fridays only - so I am debilitated only on weekends. Unless anyone has any ideas. On the good side, my headaches have drastically decreased, and I am sleeping considerably better than before the MP. I still have great confidence in the MP. I think it is doing what it is supposed to. The only thing I am not sure of, is why the sore teeth, tongue, throat and lymph nodes stay so sore so long (5 days tomorrow) after the mino? And, any ideas on how long it might take (roughly, on average) for jaw infections to clear?, as well as the cognitive, memory and depression symptoms? - DaveW |
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DaveW Member
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Hello (((Good Folk))), I started the MP (with quercetin from the start) Aug 14/04. Understanding my herx responses and mino scheduling Regarding herx responses, I had previously ramped up to 32 mg of mino (a couple weeks ago), and experienced some herx (jaw and head pains) severe enough that I had to miss a day's work. My next dose (a week ago) was cut back to 16 mg, and that gave me a sore tongue, and sore throat/lymph nodes/teeth - severe enough that I could barely work. The first three days after this dose still threatened my work as an instructor, so I delayed my last dose until this past friday (which was 5 days after my previous dose - in an attempt to experience the worst/potentially debilitating herx on the weekend). I have learned something from increasing the intervals between mino doses to five days. For me (personally), it takes five days (or more) for the minocycline to stop working and clear from my system. Thus my severe jaw pain herx was a result of my taking smaller doses (that I ramped up and repeated too quickly) that were building up in my system. This means that if I take the same dose of mino every two days, the mino would keep building up, and the herx would keep getting worse and worse. I say this because I have twice now had much longer intervals than 2 days between doses of mino, and each time my herx slowly decreases each day (but not showing major decreases in herx until at least 4 or 5 days). Then, my last dose of mino (of 16.5 mg - enough to nearly debilitate me on my previous dose) - had virtually no herx response on this dose. I assume that this was because it was so long since the last dose, that it was not being added to mino already in my system. I appreciate that the reduction in herx response to this latest dose may also be (in part) due to a decreasing total bacterial load, and/or simply the inconsistent and unpredictable nature of herx. I'll have to keep my eyes open to try to differentiate these potential influences. I have also noticed, that the nature and location of my herx seems to change as the level of mino in my system declines. At higher levels, I get the jaw and scalp pain. Then after the mino declines (after a couple days), I get more sore tongue/teeth/throat/lymph symptoms. Then as these symptoms decline, I get more symptoms of swollen skin on the soles of my feet (angioedema), and the transient aches and pains all over, and perhaps more cognitive/mood problems. Strange. Is there any significance to the extra long length of time it takes for mino to stop working in my system? Does it say anything in particular about my system, or result in any particular specialized advice I should follow? Re Quercetin: I have been taking 235 to 470 mg quercetin with each (8 to 6 hr) 40 mg dose of benicar. This quercetin (Natural Factors) product also has 235 mg of other bioflavaniods, as well as 40 mg of rutin and 40 mg bromelain. It was the closest I could get to pure quercetin where I live in Canada. It seemed to help, but it did not seem to work as well as the pure (Nature's life) quercetin I just rec'd from the U.S. two days ago. I am feeling especially good right now, and I am not exactly sure what part the change in quercetin is playing in this improvement, so I will report on the difference in the products again in my next post. How am I doing now? I have had a few nights of sleep that is approaching normal - and is just wonderful for me! I can't remember how long it has been since I slept this way. Non- fibro/CFS (or autoimmune) folks may not understand this, but I am actually starting to feel tired some nights! Before, I never felt tired (so sleep never came easy), even though I was always extremely exhausted - even just after waking. In addition to feeling tired, the bed actually feels good sometimes! My muscles seem to be somewhat more relaxed now, which permits me to actually enjoy the feeling of the bed (both before sleep and upon waking). It has been years since I have experienced this. As the muscles relax, the achiness and soreness also seems to be declining slightly. My muscles are still not near normal yet, so I can only imagine the potential improvements that still await me. <big grin> Yesterday I went for a car journey that took 6 hours (round trip). This would have destroyed me before. I also ate a bunch of food (that included sugar) that also would have destroyed me before. Then I fell asleep in an easy chair before going to bed last night. That may not sound like much, but before the MP - falling asleep in the easy chair before going to bed would have guaranteed my next day to be a write off. Today I feel the effects of yesterday's combination of sins, but I still feel better than I did on a good day (before I started the MP). This significant recent improvements I am reporting might just be a temporary wave between flares - but I love it (and it has filled me with anticipation of having a life again!). Whenever I dare to grasp this hope, it can bring me to tears (of joy) <------ something else I have not experienced in a lot of years! My cognitive and mood problems may also be slightly better this week, but continue to be a problem. One step at a time. I hope everyone here has a great week! - DaveW |
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Aussie Barb Research Team 
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Hi Dave!!!  good observing there!!! thanks for sharing so we may all gain and I'm pleased to see you are gaining ground!! YAY!!! (and that with the going slower) re the Quercetin... TM said no bromelain  Thanks for the GoodNews and wishing you all the Best. Barb xx |
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Reenie inactive member
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DaveW says, "I have learned something from increasing the intervals between mino doses to five days. For me (personally), it takes five days (or more) for the minocycline to stop working and clear from my system." Dr M says, "Mino clears the body quickly (within 48 hours)." http://www.marshallprotocol.com/forum23/626.html Dr M says, "Once your immune system starts killing the bugs it usually keeps right on doing that." http://www.marshallprotocol.com/forum23/627.html Dave, According to Dr M, the mino starts the herx, then once this begins, your immune system keeps working for a few more days. This doesn't change how you would handle it, since you would still want to wait until the herxing stops before adding more mino.  "Yesterday I went for a car journey that took 6 hours (round trip)" I would wonder how this affected your 1,25-D levels.  If you drive your D too high, you may feel better, and not be able to herx until it comes back down. It's just a thought and something to watch for while titrating mino. When you get your test results back, this will help assess that. Dr M says, "I suspect that your D level (or something) was initially a bit too high to allow the antibiotic to work properly and that the antibiotic just kicked in, bigtime." http://www.marshallprotocol.com/forum23/627.html |
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paulscha Banned
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Hi Dave, Just wanted to complement you on EXCELLENT reporting.  This was so clear and easy to follow, the questions very apt as well. I'm fascinated by that shift in your symptoms that seems to follow the mino dosage. (Of course, I wish you could get well overnight with no symptoms at all) Cheers, Paul |
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DaveW Member
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Update: I was out driving in a vehicle for three days last weekend (with Noir glasses and long sleeved shirts). I have been struggling with depression, cognitive problems, exhaustion and generally feeling poorly ever since. (I only have Noir 40% glasses so far. The darker shades are on their way in the mail). Would this be enough to derail me and cause such symptoms (for a week?). I get the feeling I already know the answer (but just don't want to accept it). I was outside for about three hours again yesterday (with the same protection), and today I am feeling the same symptoms. I am now taking mino only once a week on Fridays, as it seems to take this long to overcome the herx of a dose, and I am trying to keep working (which is a struggle for me now - even without herx). Last Friday I took 25 mg mino (up from 16.5mg), and experienced sore teeth, sore throat, and some soreness on the soles of my feet (angioedema), but nothing too severe. The depression, exhaustion and cognitive problems are still quite severe, but they have been all week, so I do not assume this to be herx from the mino. However, I also took 840 mg (3 capsules) of activated charcoal at 8:00 pm on Friday - midway between benicar doses (and 8 hours after the mino dose). At 7:00 am Saturday morning - I awakened with the urge to use the washroom, and suspect I totally emptied my bowel over a 20 minute period, with a consistency of coloured water. I have had two similar experiences in the last ten years, except that both other times the experience was acompanied by severe cramping. Both of these previous experiences resulted in a week's hospitalization, as anything ingested (even water)was passed thru my system within 15 or 20 mins (with extreme cramping), with the bowel maintaining this response for a week. The more recent of the past two experiences (two years ago), was also accompanied by the passing of a significant amount of blood. The doctors had some disagreement on whether this was crohns or IBS. I suspect it was IBS - since symptoms are so intermittant, and the bowel shows no residual damage. Normally, I simply have bloating and delayed motility (which I have interpreted to be the constipated form of IBS). My experience Friday morning was the same quick emptying - but no cramps, and my lunch meal was normal with no further problems. I am not sure if this was herx, or perhaps the charcoal? I am very new to using charcoal. Can it do this? My blood tests showed an inflamed liver and stressed kidneys. I can even feel this stress on the two sides of my lower back (kidney areas), with occaisional low level achiness that appears to be in the kidney areas. I was hoping that the charcoal might help clear some of the toxins (relieving some of the pressure from my kidneys and liver). I was also hoping it may make the herx (particularly the depression) more tolerable, as another member had warmly shared that it had been quite useful in reducing depression for them. Thank-you (((Good Folks))) for any insights, suggestions or advice that any of you may have to share. This is not very pleasant right now, but I still have great confidence in this path. - DaveW |
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Reenie inactive member
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"I have been struggling with depression, cognitive problems, exhaustion and generally feeling poorly ever since. (I only have Noir 40% glasses so far. The darker shades are on their way in the mail). Would this be enough to derail me and cause such symptoms (for a week?)."' Hi Dave, Sorry you've been having such a hard week. For myself, I'm certain the amount of sun exposure you've had, would cause this for me.  I can't/don't leave my cave for days at a time. I don't know how some ppl manage that get sun exposure. I know some are more sensitive than others, but the good news is... the sensitivity improves after awhile. |
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Aussie Barb Research Team
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Hi Dave
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DaveW Member
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Thank you Reenie and Barb! Regarding Barb's question: There may have been a slight temporary lifting of the depression from the charcoal Barb, but I'm not sure. I do plan to keep trying it, but this time with lower quantities. Over time, I will probably get a better idea of its effects on depression. Is charcoal something a person can take safely on a regular basis, or could it block the absorption of some nutrients? - DaveW |
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Aussie Barb Research Team
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Dave Charcoal absorbs poisons. When I need it, I can feel the need (misery torment depression) about 3 hourly....... and I take it away from meds. My pharmacist told me that some ppl use it monthly as a cleanser....  I haven't ever needed to take it every 3 hours for more than a day or at most 2, cos once it does the job, and I have relief I forget about it.......... and I mean forget..... it usually takes me a bit of misery before I remember to grab for it again next time.... grrr  I might add that it does not have the evacuation effect on me. Barb x |
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Reenie inactive member
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DaveW says, "Over time, I will probably get a better idea of its effects on depression." The bottle I have says, "Activated Charcoal is one of the most finest absorbent agents. Each particle contains many small chambers and cavities that "capture" or bind-up unwanted materials and gas, which are safely carried out of the digestive system. "Recommendations: Take 2 caps after eating, as needed. Repeat after two hours if discomfort persists. "Note: The high absorbency of charcoal may reduce the effectiveness of certain meds. Consult a physician before taking this product with other meds." Dave, Have you considered increasing Quercetin to see if that helps? I know Q is supposed to help with fatigue and brain fog. IMO, Q sounds like it may help w/depression sx, more than Charcoal. It's just a thought. Last edited on Mon Sep 13th, 2004 17:34 by Reenie |
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DaveW Member
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Time for my weekly update. To understand the update in perspective: Started MP Aug 14/04. My summarized major herx responses have been as follows: - Adjustment to benicar and intial herx included tiredness, depression and brain fog - fairly constant since beginning, and sometimes quite severe. - Ramped up too quickly and dosed too often - resulting in some stabbing pain in my jaw and on my head. - I have also experinced sore throats, sore teeth, sore tongue, swollen lymph nodes under chin, and mild angioedema (swelling) on the soles of my feet (all familiar symptoms from my early years with the disease). - I reduced doses to once a week, as it seems to take that long to reduce the herx from each dose. More frequent dosing resulted in more (too) severe herx. - Experienced one rapid and severe bowel evacuation (without any cramping!?!?), which I suspect to be herx. This week's report This week was relatively uneventful for herx (but I can do without the dramatic herx very nicely thank you). I repeated the 25 mg dosage of mino (taken on Fridays) for the third time. I have noticed considerable improvement in my sleep, with the circadian rythms finally permitting me to sleep earlier, and that wonderful experience of actually feeling tired, looking forward to sleep and having the bed feel good (as opposed to always being exhausted without the ability to relax - with sleep always being difficult and light). I am so thankful for this improvement alone. My depression has declined this week, and does not have the near debilitating severity I experienced in the last and previous weeks. I sure hope this continues. In addition, the fatigue that was so pervasive in my first few weeks seems to finally be declining some. I noticed several times that I walked some distance (a block or so) at a good normal speed - without feeling exhausted or having to slow down. Note that these improvements are so gradual that I may not even notice them as they are occurring. The severity of symptoms also tends to fluctuate in waves, making it more difficult to recognize overall improvements. When herx gets bad, it can feel like you are worse than ever (and make you feel that there is no hope for you). I find that I often have to look back over a few weeks to appreciate the improvements I have experienced. That being said, I also just realized that my near constant headaches are quite infrequent (and less severe) for me now. I attribute this improvement to the NoIR's. I am also generally more stable now - not having to contantly live in fear of how I might feel three hours from now. I am still sufferring from significant cognitive and memory problems, and can sometimes become noticeably anxious (for no apparent reason - which I suspect to be herx). I still have virtually all of my fibro symptoms, but the humble improvements are very inspiring. My symptoms have been slowly growing progressively worse for 18 years, so seeing this trend reverse itself (even in humble ways) is very exciting! This week, I also caught a cold that is going around here, but I think the benicar may actually be reducing the severity of the symptoms! Hard to say how the cold may be affecting my other experiences this week. So ends my (typically long winded) weekly report. All the best to all you fellow MP'ers! - DaveW |
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Aussie Barb Research Team
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Great overall Summary Dave very helpful to have the full perspective. Thanks & I'm pleased you were able to work out what worked best for you re taking the Mino & working all good.Best as always, Barb |
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DaveW Member
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Relatively minor changes since last week's report: - Ramped up mino from 25 to 33 mg this week - Experiencing significant depression once again (along with increased brain fog) - Sore teeth (lower left jaw) - Increased muscle stiffness and pain - particularly in the neck and chest (right side) - Increased incidence of sharp transient pains (in toes, fingers, or elsewhere) - Appetite seems to have increased - Bowels seem to be normalizing (after years of chronic constipation) - Sleep remains quite good. The Plan I have been taking my dosages of mino only once a week (on Fridays), so the major herx occurs on weekends - to protect my work (teaching) from debilitating herx reactions. This week, I ramped up to 33 mg on Friday, but if the herx has declined significantly by Tuesday, I will then take a (smaller) dose of 25 mg. This should keep herx tolerable through the week, while still maintaining some progress against the bugs. I will then take my (larger) 33 mg again next Friday. I have never seen anyone plan to alternate mino dosages in other posts. I hope there is no reason why this would be a problem. I have decided to try this, as I doubt that my once per week doses will get me to 100 mg of mino within 3 mths. I am now at 6 weeks, and have just managed to ramp up to 33 mg. I can see that if a person did not have a thorough understanding of the MP (along with the faith that comes with such understanding), they would not have the determination required to carry them through the difficult times. It would be so tempting and all too easy to interpret the adjustment struggles and herx as meaning the protocol is "not right for them". It takes faith, patience and perseverance to keep feeling thankful for feeling rotten! - Keepin my eye on the prize, and hangin in there! - DaveW |
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carol Moderator 
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DaveW wrote: I can see that if a person did not have a thorough understanding of the MP (along with the faith that comes with such understanding), they would not have the determination required to carry them through the difficult times. It would be so tempting and all too easy to interpret the adjustment struggles and herx as meaning the protocol is "not right for them". It takes faith, patience and perseverance to keep feeling thankful for feeling rotten! Dave: This is well said. It was easy for me to get there intellectually with respect to the MP, but the emotional struggle that accompanies the physical struggle too often trumps the head stuff. Carol |
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DaveW Member
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I hear you Carol! When they get bad, the depression (mood) problems and cognitive difficulties are the most debilitating for me as well. When the depression gets bad, it is almost impossible to retain hope, as a core characteristic of depression is "feelings of hopelessness". I have come to believe that people who have not experienced significant prolonged depression are simply not capable of fully understanding the extent to which depressed people have no choice in their feelings. If they had choice (like everyone else), depression would not be a disease. I also suspect that the people who have learned to live with depression (that is not too severe or consistent), have learned to cope by not trusting those feelings - even though they seem every bit as real as any other feeling they have. I try to remember that because herx inflammation can make me feel very depressed - that likely means that the depression is a symptom that will abate when the bacteria/inflammation are finally harnessed. That thought can always bring a little smile, so I clutch onto this little piece of reason to help me through the tough times. (P.S. Being obsessively stubborn may help a little too - but of course I'd never admit to that!) (((Carol))) - DaveW |
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Aussie Barb Research Team
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All well said and done xxxx (((Carol & Dave))) re >>I also suspect that the people who have learned to live with depression (that is not too severe or consistent), have learned to cope by not trusting those feelings - even though they seem every bit as real as any other feeling they have.<< I agree.. it sometimes takes me a little while to recognise the visiting thoughts as frauds... brain fog.... but then I do & I say to MySelf. "these thoughts are not real, they are not true... this is the sickness talking" Depression is a very nasty sickness. Best, Barb |
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DaveW Member
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Weekly Update: I followed through with my plan to take 20 mg of mino on Tuesday, and 33 mg on Friday (so I would not experience debilitating herx on weekdays). This worked as planned - with no debilitating herx, or profound improvements to report this week. Some minor changes I did notice I have noticed that the high level of depression I was experiencing has seemed to decline this week. However, my cognitive and memory symptoms have not improved. I find myself typing characters backwards or sometimes missing letters in words - requiring me to do a lot of editing. I have noticed this for several months (long before I started the MP). This is one symptom the MP has not yet touched. I hope that it eventually succumbs. I also find that important things can slip my mind even just a few seconds after I think about them. This causes significant difficulties. I am also hoping (and praying) that this symptom will also eventually succumb to the MP. Anyone have any experience with the improvement of these symptoms? Understanding the MP in terms of my experience (Personal Speculation) My sleep this week was not as good as the previous week. I am tentatively attributing this to my cutting down slightly on my benicar dosage (due to a supply problem), and also because I took the extra dose of mino in mid week - both of which would act to increase inflammation levels from what I had experienced in the previous week. Even thinking back to pre-MP experience, it seems that when inflammation levels were up (as evidenced by other symptoms) that I had the greatest problem with sleep. This is leading me to the assumption that there is a direct correlation between daily fluctuating inflammation levels and sleep quality. This direct relationship does not rule out that the inflammation may also affect sleep quality through other chronic chemical and hormone (HPA axis) dysregulation. I suspect the adrenals to be particularly implicated in (at least my) sleeping problems. I would love to see a study of adrenal output vs sleep quality. I suspect the long term decline in sleep quality that we experience as Th1 disease progresses is likely due to the dysregulating effects of chronic inflammation on the HPA axis. Such dysregulation changes slowly. Whereas, the fluctuations we experience in sleep quality from one night or week to the next, are likely due to the current levels of inflammation we are experiencing. For me, the MP has made these fluctuations much greater and more evident. Just some thoughts to share. All the best, - DaveW |
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DaveW Member
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Weekly Update I noticed a few small improvements earlier this week. I caught myself stretching once. There has been no urge to stretch for years (I suspect because I am too stiff and sore). I did not think about it - I just all of a sudden noticed I was stretching! I also started singing while I was working in the kitchen one day. This is something else that just happenned spontaneously - that I also have not had the urge to do for a long long time. These experiences are not the overcoming of major symptoms - but I do think they are indicative of progress. I am starting to understand that my improvements on the MP are subtle and insidious. This is exactly how my disease progression went. Each day seemed the same as the last, but over time my symptoms got worse in imperceptible incremements. Now the improvements are happenning the same way. I am still struggling with a lot of mental confusion/memory problems and sure hope this will pass. An unusual occurence this week This week, my supply of benicar ran out. I have more on the way, but am having to go without benicar for a time. Being in Canada, I decided to try making a temporary substitution of diovan (another ARB). I just started the diovan yesterday, but so far I must report that I very much don't like it. I tried 80 mg every 8 hours (with quercetin), but the experience of the drug was such that I could not bring myself to take the third dose. I took 20 mg of benicar (I had left) as a substitute for my third (bedtime) dose. I have a degree of dizziness. My head almost feels under pressure, and my ears ring more often. Sometimes, other people's voices even sound echoey (sp?). With these experiences, I feel somewhat spaced out. There, but not there. I am also more lethargic. The lethargy is not unlike when I first started/adjusted to benicar. I have been monitoring my blood pressure, and the diovan seems to take it down lower than the benicar did (by about 8 to 10 points), but it still seems to remain in the 90's over 50's. I must say, my muscles seem slightly less sore - but I also seem to be experiencing less herx from the antibiotic on the diovan than I did on the benicar. I am wondering if it may be possible that I am experiencing different herx? My lower jaw pain/soreness is virtually gone, but the lower back of my head, neck and shoulder muscles get very stiff if I sit still for awhile. This is in contrast to the benicar. I also seem to have a slight or threatening headache on the diovan, which was not there on the benicar. I also do not feel as stable on this drug. I am feeling quite apprehensive or fearful of the potential side effects. Last night I felt unsure of my ability to drive my car - which has not happenned to me before. I realize that these experiences could be explained in part as being adjustment - combined with psychological fears of the unknown. I have cut back the dosage some, and if the adjustment to no ARB is not too great, I may just stop the MP until my supply of benicar arrives. On the other hand, if I seem to adjust to the diovan, I may continue with it as a temporary substitute. If I continue on the drug, I will report on it again after there has been time for adjustment. For the moment, it seems very clear to me why it was rated as a distant second to benicar. - DaveW |
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DaveW Member
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Progress after this post is presented under the main page heading: " Full Protocol plus Quercetin". DaveW |
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Viktoria Member
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Dave W, What a fantastic writer you are. Your students are truly blessed to have an instuctor like you! You are very inspiring and the way you share your observations is extremely astute and wise. I am searching for a quote to salute your contributions. Maybe I'll find something suitable one of these days! I will follow your progress. I know you'll have really significant breakthroughs soon.Many,many thanks for your reports, Viktoria |
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Aussie Barb Research Team
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click on > Experience of DaveW |
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Reenie inactive member
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Dave W says, "I also do not feel as stable on this drug... I have cut back the dosage some, and if the adjustment to no ARB is not too great, I may just stop the MP until my supply of benicar arrives. On the other hand, if I seem to adjust to the diovan, I may continue with it as a temporary substitute." Dave, I would support your decision to at least not continue w/mino, even if you continue to take the substitute ARB, since it prob would change the herx or prevent you from having one. Then, when you go back on the Benicar, your herxing may be stronger, if the Benicar is providing you w/a better blockade. Would you pls include your mino dosing in your sig lines? TIA Last edited on Sun Oct 10th, 2004 22:26 by Reenie |
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DaveW Member
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Thank-you Viktoria - You are too kind! Thank-you Reenie. I think your advice is wise, and I will try to put my mino dose in my sig line. The only problem is, with the limited space - whenever you add something, you have to take something out! - DaveW |
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Reenie inactive member
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Dave, If you look at some others sig lines, you'll see you can fit alot if you abbrev. IMO, it's important to have the MP meds you take included, and it's now required to have your questions answered by Dr M and Meg. (I see you've already included your mino in sig line, but thought it would be helpful to post this, for others reading this) Last edited on Mon Oct 11th, 2004 19:35 by Reenie |
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DaveW Member
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Weekly Update (Presented after my Report on Diovan) Report on my Experience with Diovan Last week, I ran out of benicar and tried diovan as a temporary substitute. I never did get onto a full dose of diovan long enough to adjust (assuming there would be an unpleasant adjustment period, as there was for me with benicar). In addition to the symptoms and experiences I reported last week, I also noticed that diovan made me feel quite anxious, and even experienced anxious dreams while taking it. This anxiety made me apprehensive, and may in part be responsible for my fear to take the drug at full dosage. I had also noticed that my (pre-MP) slight but near constant headache had returned. I also noticed muscle pain slightly decreased and a decreased sensitivity to light by my eyes. I believe my overall herx had decreased, but the herx I did experience was different pains and symptoms, in different locations. This makes me suspect that as the nature of the blockage is different, it may permit access to different CWD than benicar. In this light, I am considering doing a trial later in the MP (subject to the approval of our Gurus) - where I take diovan along with benicar, to see if it can stimulate herx not experienced on the benicar alone. Closing summary - I found this ARB to be highly inferior to benicar (with a greater number of side effects). However, in fairness - I did not take it long enough to adjust to a full dosage. Weekly Update This week I re-started my benicar, but have been set back considerably by having to stop it temporarily (and by my attempt to substitute diovan). I do not seem to be experiencing the same level of herx on the benicar now as I did before I ran out. I even ramped up from 33 to 50 mg of mino this week, without any profound (or expected) herx reactions. My depression levels have increased once again <sigh>. They had been bad in my early weeks of benicar, but had abated somewhat in more recent weeks. My appetite has also become very strong - particularly for carbs. I am finding it increasingly difficult to deny myself things like choc bars, soft drinks and ice cream. They seem to allow me to focus (temporarily) when I otherwise cannot focus, even though the benefit is short lived. After the hour or so of benefits, I then feel worse than ever. The amount of food (of any kind) that I consume also seems to have a major effect on the level and nature of the herx I experience - with my best/cleanest herx reactions experienced when food intake is very low. I am also sufferring from a high level of mental confusion. This one symptom seems to be untouched by the MP so far. It is staying the same, or perhaps even getting slightly worse over time. I find this quite disconcerting - as the (pre-MP) level has already affected my life significantly, and progression of this symptom would be devastating. On the up side, my sleep is improving again - which should help. I am hoping I can re-adjust to the benicar and resume where I had left off (when my supply was interrupted). I had been progressing quite nicely. - DaveW |
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Aussie Barb Research Team
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(((Dave))) perhaps when you have established your Benicar blockade strongly again, things should hopefully improve for you... this may take a while to establish properly again..? wishing you well, Barb ... |
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DaveW Member
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Weekly Update As per last week, I am still suffering from cognitive (concentration and memory)difficulties. I am also experiencing a significant level of depression - and these two symptoms combined are making life a real challenge. (However - Note that I suspect I would feel even worse if I stopped the MP). I am still experiencing a somewhat grey, indistinct herx - that is not as obvious as the clear and obvious herx I experienced before my supply interruption of benicar (a week ago). I am also not sure if my cognitive and depression symptoms are part of the herx. I am actually praying they are - out of the (decreasing) hope that the MP might resolve them. Before I interrupted the benicar, I was experiencing sore throats, sore teeth, swollen glands under my chin, and sporadic sharp pains (which were clear herx). Now I experience almost none of these, but generally feel "yukky" (both physically and mentally). However, the distinct physical herx is perhaps slightly more evident than it was last week. I still notice that eating any food seems to increase my feeling yukky, and decrease my distinct herx. After a big meal, I feel yukky (especially the next day), with all distinct herx gone. If I go without food, I feel better the next day - and the distinct herx increases. The solution may appear simple - but I am also wanting to eat nearly constantly - sometimes feeling I have to eat something just to get the energy to make it through the next hour, and to quell the distractions of "hunger" from constantly interrupting my attempts to focus and concentrate. I am holding back my cravings to eat more - enough to be maintaining my weight, but this is still enough food to make me feel yukky and prevent my herx. I do not understand the unusually strong food/herx trade-off I experience - but it is something I'd love to gain some insight on. In my early weeks of the MP there were no such problems as I had a very low appetite, and did not feel a need for food to "get through the next hour". Currently, I perceive this problem to threaten the very effectiveness of the MP for me. - Hangin in there... - DaveW |
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Aussie Barb Research Team
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Hi Dave xx good to see you back again. sorry that you are feeling so yukky.. I have had to stop my mino at 12.5 mg 3 weeks ago cos my NoIRs broke.. I continued on the Benicar but have had the yukky depressive feeling too... and sometimes sort of wondering "is anything really happening here??" What I have always believed and what upholds me now... is to go with the flow... to trust what is happening... and when we need to do something else we usually pick up on it. For MySelf, the inflammation is what makes me feel yukky in the gut. & if it is stirred up, something has to be happening IMO. best to you Dave, Barb..... |
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Reenie inactive member
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Dave, Your food sxs sound like hormonal shift. What do you eat and how often? Are you eating low carb or modified carb diet? It's really important to help you feel better, that you watch your diet. I used to be insulin resistant and when I first started on Benicar, (which is what you've done again) I felt that I had to eat every 2-3hrs. I eat a low glycemic, modified carb diet. The last labs I had, my insulin is now within normal limits and I don't notice the hormonal flip flops like before, but still have to be careful how I eat. |
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carol Moderator
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DaveW: For what it's worth, I am also experiencing a change in the nature of my herx. I believe we have been on the MP about the same length of time. Up until recently, my most dramatic herx symptoms included things that were very different from my disease symptoms. While I felt like the little girl in The Exorcist, it was very reassuring. For the last week or so, the odd ball symptoms are largely gone, and it's more like general RA-like crummy! I need to post a progress report on all this, but just wanted to let you know you have company. Carol |
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DaveW Member
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Barb and Carol, Barb, perhaps the yukky feeling you are experiencing, is similar to what Carol and I seem to be simultaneously experiencing. Perhaps there is some type of plateau that is typical at this stage of the protocol? .......and perhaps there have been others before us that can give us insight or advice? Renee, I tend to eat soup for lunch and mostly chicken or pork for supper meals. Sometimes when the cafeteria soup is not to my liking, I will have my larger meal at lunch -consisting of a meat entree' and the vegetable of the day. I usually skip the starch (which would be higher in carbs). Later in the afternoon I often have some fresh fruit - to hold me until supper (which is usually at 7:00 - 8:00 pm). The above is when I am "good". But sometimes I give in to the cravings and eat a bag of chips, choc bar or a soft drink. Once this starts, I tend to need to eat something every hour or so for the rest of the day to maintain concentration levels high enough to keep working. Thank you all for your thoughtful replies, and have a good week. - DaveW |
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Debbie D. Member in Phase 2/3
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I have wondered if the increase in depression is also our constant focus on our disease, when to take meds, symptoms etc... for I too have had an increase in the depression. Regarding low carb snacks, I too have been doing low carb and when the need to eat things with sugar/chocolate, try subsituting the no sugar candy bars and chips. I have found several candy bars I eat daily (Ashers & Slimfast) and there are low carb tortilla chips, no carb cheese crackers, etc... which can help satisfy those cravings. Those carbs are in the comfort foods which increases the seratonin to make us feel temporarily better. The diagnosis of Sarc this year, inability to exercise and need for bedrest, has led to a 25lb weight gain...Yuk This is an exciting and confusing journey we are on and I know that we are on a slow pace to better health. Have a great week and don't get discouraged. Deb |
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Aussie Barb Research Team
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I was thinking....we have this in common.... there is less light *seasonally for you ppl, & *rewearing NoIRs for me! that would be causing a reshuffle of hormones also.. Barb.... |
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GPG Member
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One way to help curb the cravings is to add good fats to each meal. Avocados in salads with olive oil, natural butters from almond, peanut, macadamia or the nuts and seeds themselves are very filling and keep blood sugar stable. This will help you to avoid a sharp rise in bloods sugar from a high carb snack or candy bar, which results in too much insulin production and then a blood sugar drop. This will bring on another craving. Good fats and protein with each snack or meal will keep cravings down. I don't recommend using the "lo carb" products as they are often loaded with artifical ingredients and sweeteners. They aren't really food. |
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Reenie inactive member
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Debbie, Check those so called "candy bars," such as Slimfast, for added D. I recall someone saying their Slimfast contained added D, as do many meal replacement bars. |
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Paula Carnes Member in Phase 2/3 
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Debbie, I know this isn't a support group, but... There are amazing things you can learn only while sick and limited. You learn to live inside your head and to sustain yourself with your spirit. Perhaps use these months and years to write, draw, create, if you aren't already. Or "pay it forward" by encouraging others as you did in your post here. I am convinced we will look back on this as a huge medical breakthrough for many, many sick people. Paula Carnes |
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Aussie Barb Research Team
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Dave How are you? You may have seen but I am just letting you know that there is a new, updated version of *How to Start the MP* with much more information. You may wish to read the updated instructions, and it is a good idea to print and provide a copy for your MP Dr. from http://www.sarcinfo.com/phase1.pdf .... There are other Important new documents as well. Letting all MPers know to please keep an eye out for all new information posted on the MP site as you keep in touch with us in your Progress Reports regularly, so that we may help you to do MP with the utmost efficacy... Thank You, & Happy MP, Barb.... |
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DaveW Member
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Weekly Update I am finally starting to re-stabilize on the benicar, and am starting to experience a clear and distinct herx once again. I took my fourth 50 mg dose of mino on Friday. I am considering ramping to 100 mg this coming weekend. I must admit, that when I was not herxing in a clear and distinct manner with mino alone, I used a combination of over the counter (natural) antibiotics to "kick start" the herxing - and it seemed to work. I used high allicin garlic tabs, graprefruit seed extract and oregano oil. (Right now, I am busy stuffing a magazine down the seat of my pants in anticipation of the response this admission will engender). I had used these natural antibiotics before I ever started the MP - and had recognized that they always did cause me some herx, as well as having helped me when I took them over extended periods. I am quite convinced they are effective against (at least some of) the bacteria I am infested with, but perceive them only as a very poor substitute for the MP (and almost certainly incapable of complete CWD eradication). Now that I seem to be back on track with the MP I will drop them, and will respect the wisdom of keeping the MP pure (as long as it keeps working for me in its pure form). (Can I take the magazine out now? It has Martha Stewart on the cover, and somehow I just don't trust her down there!). My depression has declined to some degree over the past few days, although my concentration still has not improved. I am once again feeling pain in my teeth and jaws, which I welcome - as I know I have an infestation there. The longer I am on the MP, the more that I realize how important it is to understand it - to a depth that permits a deep personal conviction regarding its value and validity. Such conviction is essential to carry a patient through the many challenges it poses. My experience would temp me to give the following advice to those considering the MP; "If you don't understand MP well, and feel a strong belief in its validity and potential - don't even try it". - DaveW |
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Aussie Barb Research Team
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DaveW wrote: The longer I am on the MP, the more that I realize how important it is to understand it - to a depth that permits a deep personal conviction regarding its value and validity. Such conviction is essential to carry a patient through the many challenges it poses. Thank You Dave.. good quote.. am glad to see you have the Benicar & the herxing & the depression more towards where they ought to be.... Barb... |
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DaveW Member
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Weekly update This week I ramped up to 100 mg (from 50 mg) of mino for the first time. The increase in herx was considerable, but tolerable. Herx symptoms included common symptoms of soreness and pains in my jaw and teeth, and sore achy muscles all over, short transient pains all over, and a slight constant headache. It also included increased difficulty concentrating, increased fatigue, and increased depression. I am quite happy in the perception that the herx is now occurring, as it should. Bowels are responding ever more naturally, and I have experienced small windows when concentration (my most tenacious unyielding symptom), may have actually improved slightly. I also experience occasional feelings and emotional stability that have been foreign to me for several years. This gives me hope. Speculation From my experience over the past few weeks, I have realized that the adjustment to benicar takes at least several weeks (at least for me). I originally thought I had adjusted to it within a week, but I did notice changes in my response to the MP over several subsequent weeks (which I attributed to the mino, and/or the reduction in total bacterial load). Then, when I had to stop benicar (due to an interruption in supply), I experienced many unpleasant re-adjustments to its absence. Then, upon recommencing it - it took several weeks to get me back to where I had left off before discontinuation. I have come to realize, that the adjustment may be so long that I may still be adjusting. I suspect that the dysregulation of body chemistry and hormones (due to systemic inflammation from the CWD), does not correct itself (or find a new homeostasis) quickly. I also suspect that as the total bacterial load decreases, the body chemistry keeps adjusting in response to the changing levels of inflammation. Due to unreliable supply, I have never taken benicar at a dosage of more than 40 mg every 8 hrs (with quercetin). I can tell that my body begins increasing inflammation before each dose. If I ever get a reliable source in higher dosage, I can only speculate on what further positive adjustments may occur if I increased the dosage to 40 mg every 6 hrs, and maintain more constant lower inflammation levels. Re: The Canadian Special Access Program (SAP) I am Canadian, and have been working on getting access to benicar through an SAP application, submitted by my Doctor to Health Canada. This application has now dragged on for many weeks. We sent in the form (after considerable time and care in filling it in as completely as possible). Health Canada then requested that my Doctor send in more information and research regarding its safety and its use for this purpose (reducing inflammation in fibromyalgia), as well as justifying that there were no suitable substitutes for benicar that are available in Canada. A great deal of time and effort was spent researching the best response we could put together. We faxed in 24 pages of articles and links in response to this request. Then, Health Canada requested a list of all the treatments we had already tried (without success), to ensure all standard approaches were exhausted and futile. Again, a great deal of time and effort went into listing the many dozens of unsuccessful approaches attempted over my 18 years with the disease. It also included test results that repeatedly indicated inflammation, and other experiences that clearly indicated a bacterial infestation. This was faxed in three weeks ago, and my Doctor has yet to get a response from them. He has tried to phone them at least twice, but gets wrapped up in an unending labyrinth of computer generated messages and instructions. I will be going to see him for an update again tomorrow. I am so thankful for my Doctor's support on this, but he is extremely busy, and this has created such a hassle for him. He just doesn't have the time to keep chasing them - but I suspect if he does not, they will just let it fall by the wayside, which would set up a bad precendent for future SAP applications by other Doctors. I have an appointment to see my Doctor again tomorrow for an update (and to gently request that he "keep on them", until we get a reply). I will post an update regarding any further news or developments. Keep strong! - DaveW |
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Foundation Staff . 
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Dave says,"I suspect that the dysregulation of body chemistry and hormones (due to systemic inflammation from the CWD), does not correct itself (or find a new homeostasis) quickly. I also suspect that as the total bacterial load decreases, the body chemistry keeps adjusting in response to the changing levels of inflammation. Dave, I think that is exactly what many fail to realize or have enough respect for. When you think how powerful this secosteroid hormone, 1,25-D, is and how many other hormones have a relationship with it, is it any wonder why our poor bodies are so confused as the level keeps going up briefly and then down a bit more as we proceed on the MP. Thanks for summing it up so well. On behalf of your fellow Canadians, thanks also, for being so tenacious about getting Benicar under your national health program. Your results probably will set a precedent. Some of us here in the States are having trouble with our insurance companies not wanting to follow docs orders. The ostensible reason is safety but we know that they are really concerned about the increased cost. It will take some time, I'm afraid, to convince them that the long-term costs of treating these diseases by other means is huge in comparison. Best, Meg |
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DaveW Member
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Weekly Update I am still awaiting news regarding my Doctor's SAP application to Health Canada. I will report either acceptance or denial of the application, as soon as I get the news myself. Nothing too profound to report this week. I took my second 100 mg dose of mino on Friday. I have noticed a stronger than usual level of muscle cramps, which can occur from simply holding a muscle in the same position for a few mins (such as holding a telephone). I have also noticed an increased level of achiness in my back and muscles, with my back also having a higher than normal degree of itchiness. Concentration has again deteriorated, with depression and anxiety also being higher this week. I am also still struggling with my appetite, and a high level of fatigue. It seems that it is when I am tired and feeling overwhelmed, that I am my most vulnerable to food cravings. It seems that the food gives me the ability to relax and concentrate (for perhaps an hour). This makes me wonder about whether my brain is getting sufficient energy to operate properly. The food fix may provide an increase in blood sugar that could provide temporary relief. I have no idea of whether this is true, but it does describe the nature of my cravings and the experience of the relief provided by the food fix. One day at a time! - DaveW |
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Reenie inactive member
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Hi Dave, You may want to try eating as in the Insulin Resistant Diet. This controls blood sugar and insulin to keep it steady thruout the day, by spacing out and limiting carbs and eating only low and moderate glycemic ones. The other alternative is a more low carb diet, but I do better on the IR Diet. Here's the link: http://www.marshallprotocol.com/forum27/1287.html |
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Aussie Barb Research Team
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Dave, Hi, how often are you taking your mino? you sound to be herxing uncomfortably? do you need a day off or maybe better to drop the dose every 2nd or 3rd time to give you a break? what do you think? it would be better if you had an ensured Benicar supply.. does your sig line say you are taking it sometimes TID and some QID? Q6H would help you more of course. I hope you can soon get a constant source. Barb ... PS Dave.. are you only on mino once a week? that in itself may be a problem too.. let us know and we'll see what we can work out for you so you can feel a bit better ..? xox B |
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DaveW Member
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Reenie and Barb, Thank you both for your replies. An insulin resistant diet may be very helpful here Reenie. Thanks for the link! Barb, I take my mino once a week (on Fridays) in an effort to avoid the most debilitating herx while I am working. After I take a few doses at a given dosage (and the herx declines somewhat), then I start taking a second dose mid week. I think your observations are astute - I suspect I am experiencing a higher level of herx (due to my recent ramping from 50 to 100 mg). In hindsight, perhaps a ramping to 75 mg for a few weeks may have been a wiser choice. I ramped up too fast once before. You'd think I would have learned something! Can I blame this on my macho gender (and get away with it)? - DaveW P.S. As soon as I acquire a dependable supply (and I am working on it), I plan to up my dosage of benicar to 40 mg - 4 times per day. I suspect that may be a considerable help in itself. Take care.....and keep up the great work you two! |
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Aussie Barb Research Team
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Dave, re : "I suspect I am experiencing a higher level of herx (due to my recent ramping from 50 to 100 mg). In hindsight, perhaps a ramping to 75 mg for a few weeks may have been a wiser choice. " are you going to drop back to 75mg then to give yourself a better time ? ... IMO you may find it a better choice.. Thanks Dave Wishing you the best, & Take care, Barb ... |
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DaveW Member
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Barb, I think that dropping back to 75 mg is good advice. However, I have some holidays coming up in about a month, and it is my hope to have acclimated to 100 mg mino by then - so I can take my first dosage of zithromyacin while on holidays (When the somewhat unpredictable first response would not pose so great of a threat). My next break at work will not occur until May. For this reason, I am pushing the pace of the ramping somewhat. However, even with this consideration, I may still drop back to 75 mg. My current herx level is difficult to take. At the same time, the suffering is bittersweet. Thx for the good advice. You pegged it exactly by recognizing my pace was too fast for comfort! Take care! - DaveW |
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Aussie Barb Research Team
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Dave. I believe we have had this conversation before quite a while back.."you are a tiger for punishment" as they say.... and what I say is Aussie Barb wrote: Taking Care:Dave, especially as you have limited Benicar..... whatever you choose, choose for You, Ok? Best for Dave, Barb ... |
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DaveW Member
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Weekly Update The MP (and herx reactions) seem to be proceeding as would be expected. I did drop back to a 75 mg dose from 100 mg this week (to accommodate a demanding schedule). I will likely ramp back up to 100 mg again next Friday. I have noticed that in recent weeks, my cold hands and feet (which I experienced during my first two months on the MP), has now largely resolved itself. Depression and anxiety levels have seemed to reduce slightly over the past week. Concentration and memory are still not improving. Regarding my Doctor's SAP application to Health Canada My Doctor and I have been waiting for several weeks for the decision of the SAP program in response to an application by my Doctor to access benicar. My Doctor is taking next week off, so I contacted the SAP program myself this week with an email (in hopes of getting a decision before his week off). Note: Before approving, what the SAP program seemed to want to know is: What disease you have, and what conventional treatments have been tried (unsuccessfully) to treat this disease? Whether the drug requested is safe? Evidence, research or articles showing that the drug requested is useful for the disease being treated. A justification that the drug requested has no suitable (available) substitutes. ____________________________________________________ The email I sent to the SAP program, summarized all the above information that had previously been submitted (as outlined above), and requested approval. In response to my letter, I was told that for purposes of privacy - the SAP application from my Doctor does not normally disclose the name of the patient. Therefore, I should consult my Doctor to get an update on the progress of the SAP application. Their response reiterated that all of the above information (and the SAP application itself), must be submitted by your Doctor. I have the impression that they do not wish to communicate directly with the patients involved. This (unfortunately) requires a considerable amount of work for your Doctor. I attempted to do as much of the footwork and compiling as I could to minimize the time required by my Doctor to fulfill these requests. Still, it has been quite an imposition on his time. It appears to be a very slow bureaucratic process. My response to Health Canada was to simply thank them for the quick response, to acknowledge the need for privacy, and to announce that I would await to hear their response from my Doctor. So.....we are all waiting again. I do expect a decision within the next couple weeks, and I will report it as soon as I receive it. Personal Observations and Speculation I am coming to realize, that for me - the ingestion of food reduces herx. I am entertaining the idea that the food may actually cause a low level of inflammation that protects the CWD bacteria - thereby reducing my herx reaction. I also have the suspicion that there is a "zone" of low level inflammation that I unconsciously seek - as that is where I feel best. If inflammation gets too low, herx becomes unpleasant. This drives me to eat, which reduces the herx and makes me feel better (temporarily). This may be an unconscious learned response that I have been conditioned into over many years. I have no idea if other people have the same herx reducing response to food, or if they might also unconsciously use food to control herx. I am not certain yet of the above, and I also suspect that there are likely more variables that also play a part in my food cravings. I will continue to observe my symptoms and reactions to see if the above hypothesis holds true. It is interesting that we may have behaviours that we do unconsciously, and that we may not even fully understand the reasons for those behaviours. Have a great week! - DaveW |
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Kate D. inactive member 
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Gosh Dave, I'm glad it's you who are trying to obtain Benicar through Canada's SAP and not me. I couldn't have answered all those questions adequately and my doctor wouldn't be willing to do all that work for an "experiment." I hope it is approved and that others of us can eventually take advantage of the program. For me it's still International Pharmacy. I have had to get my Ultram from there recently too (it's not available in Canada either). I think you are wise to think ahead about planning to start Phase 2 when you have some time off from work. I'm still on Phase 1 but recently had a 5-day herx during which I was bedbound. My husband is a touring musician, but luckily he was home for this episode. It made me realize that I have to be really careful and schedule dose increases accordingly. I was also hoping to start Phase 2 during the holidays, but I don't know if I will make it. - Kate D. |
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DaveW Member
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Weekly Update Nothing too profound. I have been experiencing some increased jaw pain once again as part of the herx. I also have a feeling in my head that could be described as a combination of pressure, a slight headache and cognitve difficulties. This is not the first time I have experienced this symptom, but it is the first time I have described it. It reminds me somewhat of a hang-over, while in other ways it is like a bad head cold. I am wondering how many other folks experience this symptom? Observations I have also come to realize that we do not allow ourselves to feel progress on the MP for quite some time. Although many specific symptoms do decrease and fade away, we do not in general feel any better - because we won't permit it! As soon as we start experiencing less herx/inflammation - we up the dosage of antibiotics, which keeps us in the "just tolerable zone" of herx and inflammation. I think this dynamic requires that we have an in-depth understanding of how and why the MP works - or else we would intuitively think it is not doing us any good (or perhaps even that it is "not right for us" because we often feel even worse than normal, if/when we ramp too quickly). Re: SAP Application I have no further news on the SAP application, as my Doctor was away this past week. I may not hear any news for another week, as he is likely to be extremely busy during his first week back. These things seem to move so incredibly slow. Regards, - DaveW |
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DaveW Member
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Weekly Update Everything is going as it should. My herx (on 100 mg) is starting to decrease (after several doses). It never ceases to amaze me - how many bizarre symptoms herx can create. This week I got a sharp transient pain that felt like a very hot wire touched across the top of my stomach (or just under my chest). It comes without warning, and disappears within a minute. I have no further news on the SAP application submitted by my Doctor yet. Have a good week ((((Good Folks))) - DaveW |
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Reenie inactive member
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DaveW says, "My herx (on 100 mg) is starting to decrease (after several doses)" I didn't herx on 100mg of mino, but then had herxing about once/week, for awhile. Then, I got to the point that I don't have any herxing at all. I'm the same on both days, mino dosing and not. You may want to stay on 100mg for awhile, to see if this happens to you too. |
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DaveW Member
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Weekly Update I am continuing with 100 mino on Tuesdays and on Fridays - waiting for the herx to decline so I can commence Stage II. Unfortunately, I sense that this may take a while. Interestingly, my herx is no less on the third day than on the second. In fact, at any dosage of mino - for me, the herx have usually lasted about five days before a significant decline occurs. After a dose, my herx does not get strong for 12 to 24 hours. Then, it seems to be more severe in the evenings, and especially when I eat less. Notwithstanding these daily fluctuations, the herx level then seems decline very slowly for about five days, and then tapers off more quickly. I am thankful for the herx (or rather, for what it indicates), but I have never been sure if I should take the mino every 48 hrs - or wait five days between doses until the herx declines. The only potential disadvantage to the latter approach, is that it may result in a significant delay in my ramping progress. My approach to date has been to compromise. By taking mino on Tuesdays and Fridays, I am taking it with alternating three and four days intervals. Re: My Doc's SAP application I saw my Doc on Friday to prompt him to send in another request for an update on the progress of his application to access benicar (from Health Canada), on my behalf. The constant delays and lack of communication has deflated my optimism.....but never say never. Re: My Doc seems to be getting "on board" I was very pleased to hear that My Doc is starting another three or four of his patients on the MP (but with diovan rather than benicar - mostly due to the difficulties of getting benicar in Canada). He is aware that diovan is greatly inferior to benicar, but I think he perceives the diovan is better than nothing. I understand his reasoning. Some of his patients may not even own a computer, and may not be able to afford benicar even if they could access it. If/when he gets time, he mentioned that he would like to spend some more time researching the MP information in the Doctor's forum at the MP site. The down side is, if he does it when gets time - it may never happen. He is receptive, cooperative, intelligent and caring - and I am so lucky to have him! Unfortunately, he told me he was not taking any new patients (as he is already run off his feet, and it is very true). I am hoping that the (anticipated) successes he will witness administering the MP may increase the receptiveness of other local Doctors in the area. Regards, - DaveW |
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Foundation Staff .
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Dave, My suggestion would be to increase mino 100mg to every other day (or M-W-Fr) so that you can add Z over the Holidays as was your original goal. Have you yet purchased the NoIR sunglasses that block more infrared rays for outdoor use or are you still using only the 40%? I commend your doctor for wanting to help other patients with the Marshall Protocol. But I fear these patients will not be successful because they are not using Benicar and, without access to MP.com, may not understand the importance of avoiding all forms of Vitamin D. Please remind your doctor that if these patients fail, they were not really on the MP. Best, Meg |
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DaveW Member
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Hi (((Meg))), Thanks for the response. I still only have the 40% NoIRs, but I am outside for perhaps 20 mins per day, and most days it is dark during my 10 min trip to work, and dark again for my trip home. (This is winter in Canada...try not to be too envious!). I have 90% NoIRs, but they are size medium and I get headaches from them. I am not sure if it is because they let too much light in the sides, or because my eyes must strain to see when I have them on. I am still planning to get a pair of large 90% NoIRs for next summer. They will be the fifth pair I have purchased. I will remind my doc that his patients are not really on the MP with diovan. I also have fears that his patients may not succeed without his getting support from the MP sites, and I doubt he has time to do the research necessary or to solicit the support he needs to know how to respond to the inevitable struggles his patients will experience. I wish that somehow he could open a dialogue with Dr Marshall (and with you) - to get the door open to his consulting for advice. My best regards Meg, - DaveW |
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Aussie Barb Research Team
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Dear Dave I don't know if it is only me who is confused about the (90)% you have listed re your NoIRs... so I have posted the details from the NoIR website. The glasses for MP are the 10% for inside and 2% for outside & some like to have 40%. best, Barb ...  NoIR 40% Light Amber NoIR 10% Medium Amber NoIR 2% Dark Amber Percents (%) represent amount of visible light transmitted through each lens. Fit-Over Sizing: 100 series Small, 700 series Medium, 900 series Large |
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Foundation Staff .
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Dave, Probably at this point in time, clinicians will need to carefully screen potential MP patients for interest and ability in pursuing, on their own, the details and support necessary to succeed with the MP. It takes a lot of motivation to educate yourself, change your lifestyle and accept that you will feel worse before you feel better. I'm not sure anyone could do it without access to the information and support (if needed) on MP.com or SarcInfo. I know of at least one practitioner who will not prescribe Benicar until the patient brings the NoIR sunglasses into the office. Some are considering a consent form to ensure compliance with all aspects of the MP because it is so much more than just Benicar and minocycline. Best, Meg |
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DaveW Member
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Hi (((Barb))), Thx for the clarification. The 90% NoIRs I was referring to, are properly described as 10%. I keep mixing up whether the percentage represents the % of ambient light filtered , or the % permitted thru (and this leads me to express it backwards). I have the new design (I think they are called Spectra Sheilds?). Meg, I understand what you are saying Meg. I was spreading the word of the MP to everyone I knew, but I have since come to realize that in order to succeed on the MP - requires numerous "qualifications". My perception, is that these qualifications include: 1) A willingness to study the MP, and an ability to understand it at a level that will permit a level of belief and committment strong enough to carry them through the difficult adjustments and unpleasant herx. 2) Access to and ability to use an online computer (to access the MP site). 3) Finances to afford benicar and the other MP drugs. 4) A personal temperament that is willing to take risks, break new ground, tolerate uncertainty, and have the patience to defer gratification. It is not for "I want it to work right now" types, or the cautious " I'll wait and see" types. 5) A degree of illness that makes the cure worth the time, effort and cost. 6) Access to a doctor who will support and prescribe the MP. 7) A reliable access to benicar (if it is not available in their country). These are just my thoughts on it. Do you perceive any other "qualifications" conducive to success that I may have missed? Regards, - Dave |
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Foundation Staff .
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Dave, That's a great list. I would add: -The willingness to adapt your lifestyle to avoid sun/lights, including looking unconventional covered from head to toe and wearing sunglasses indoors and out. -The willingnes to give up some favorite foods. -The capacity to avoid or severely limit sun/lights if still employed or responsible for raising children. Best, Meg |
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DaveW Member
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Good additions Meg. Do you think this list could potentially be used by prospective new MP'ers (or for prescribing Doctors' use?). It may save frustration and cost for those who do not have a strong chance of success. It is my hope that over time Docs will become familiar and adept enough to administer the MP successfully without the need for patients to access the site. If it becomes very popular there is no way the site could handle tens or hundreds of thousands of patients, and this would also give those who have no computers a chance at regaining their health. I guess for now, it is "one step at a time".....but if that time ever comes, know that you administrators and board staff who have given so selflessly to get the MP off the ground, will never be forgotten. (((((((((((MP Staff))))))))))))) - DaveW |
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Big John Member in Phase 2/3 
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Hi Dave! I would like to add to your list, in my opinion it is of paramount importance to be in touch with your body. Sounds kinda esoteric, however, it is most important to get to know your body and how it reacts to the protocol. To become aware of minute muiances that take place. How the body reacts in a herx and with different medications. One also must understand ones mental health. Some of us become depressed or frustrated from time to time with the continiuos pain, continious herxs, conflicting information, etc. They need support and a little reassurance and maybe a reality check from a different point of view... This comes whole heartedly from the volunteers on this site who play a major part in each of our successes. My point "Willing to accept support and know when to ask."John |
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DaveW Member
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Big John, I think that your points are both valid and insightful. Thank-you for your input. - DaveW |
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Aussie Barb Research Team
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There you are >> new FAQ >>How do I know if I have the 'right stuff' to be successful with the Marshall Protocol? Thank You, Barb ... |
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Kate D. inactive member
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Hi Dave, I wish your doctor were in NS. I would camp out in his waiting room until he agreed to take me on! I am not having much luck in Nova Scotia with doctors. I have a big crisis right now because my GP was willing to prescribe the mino but is now balking at zithro because his guidelines are not to prescribe it long term due to antibiotic resistance. Not only did I choose the wrong country to live in (I'm dual citizen between Canada and the US) but it looks like I chose the wrong province too. - Kate D. |
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Paula Carnes Member in Phase 2/3
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Kate, You just get that Z pack. It will last you for months and months. You don't have a problem.  Paula Carnes |
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DaveW Member
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Weekly Update I am now taking mino 100 once every two or three days. I have experienced a very high level of anxiety,depression and concentration problems this week. I suspect that the problem has been exacerbated by my eating more sweets (Christmas goodies) than usual. I had to resort to cutting out all sweets and taking two daily doses of Nortriptyline (10mg) and SAMe - to get me through and permit me to cope. My eyes seem to be extra sensitive to light right now. My old headaches are coming back (or threatening) once again - as they did before I started the protocol. Re: Update on SAP application I still have no update on the SAP application for benicar from my Doctor. I went to see him this past Monday. He said he would send in a request to Health Canada for an update on progress. I called him later in the week, and when he called me back - I missed the call! <sigh> ..... Now I have no way of contacting him til Monday (at the earliest). Regards, - DaveW |
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Kate D. inactive member
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Hi Dave, I dropped in to see how you're doing on 100 mg. I'm solidly on 100 mg., but seem to be settled into a state of "perma-herx" on it. I know it's not really permanent because I had some good days only a couple weeks ago, but it sure seems permanent now. Interesting how my perspective changes depending on how I'm feeling. I can see you have to deal with that a lot. What do you do, just try to step back and observe depression etc. objectively? It sounds like you're taking the necessary steps. I also dropped in to see how close you're getting to Phase 2. Despite my new Phase 2 label, I am not too crazy about rushing into adding more herx on top of the perma-herx. I'm hoping my "stable" condition gets a bit more pleasant first. But I don't think there is any guarantee of that happening! I see my doc today about the Zithromax. Hopefully it will turn out to be a non-issue as Paula suggests. If not, you will hear me screaming about it from across the country! Your fellow Canadian, - Kate D. |
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Aussie Barb Research Team
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Dear Dave, You may have been looking at our FAQ > How do I know if I'm ready for phase two? You have probably been thinking preparing.... and I know you want your Benicar situation to be better too You can make contact about this when you feel ready ... all best as always, Barb ... |
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DaveW Member
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Hello (((Good Folks))), I have moved on to phase II, but have stopped back to provide an update on my progress. I have been experiencing much stronger herx on phase II. My memory and concentration have remained very poor (and possibly even worse). It is quite clear to me why they advise that you have little or no herx oh phase I before commencing phase II. I am hoping that all this ugly herx I am tolerating will pay off later in my feeling better - and I still have faith that this will occur. Regarding my Doctor's SAP application for benicar - whenever we request an update on progress from Health Canada - they say they are communicating with Sankyo. This is the same response we have been getting for two or three months. I am not sure what the hold-up is, but after this much time, it is hard to be optimistic. Regards, - DaveW |
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Reenie inactive member
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Dave, Are you taking your Quercetin regularly? I noticed you say in your sig lines, 400mg tid/qid. I'm taking a 500mg cap qid now, and it's like a magic pill for me. I was beginning to feel like I'm not herxing, but what it's really doing is helping me w/the brain fog, moodiness, weakness and lethargy. If you're not regularly dosing Q, tid, I would strongly encourage you to try it. It took almost a week for me to notice any real major improvement, since it helped gradually. |
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DaveW Member
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Hi Reenie, Thank-you for your response. Forgive my ignorance, but I don't even know what Qid or Tid mean. Somebody helped me with my sig line. I take 400 mg of Quercetin - 3 times per day. I take it along with my benicar. Do you think a larger quantity might help? - DaveW |
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Reenie inactive member
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Hi Dave, No, three times a day is the preferred dosing. I just cut back to tid myself, today. I might even try to lower the dose to 2/day, sometime in the future, since Quercetin is medicinal and we don't want to be taking any more than necessary. |
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DaveW Member
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Hello (((Good Folks))), Update from Phase II I am approx 1 month into phase II, and am having some difficulty handling the herx . It is not as easily controlled as it is in phase I (underscoring the precaution not to jump into phase II prematurely). Currently - I am experiencing many of the general (pre-MP) symptoms of my disease, but at a higher level of severity - including poor sleep, lethargy, achiness and soreness, generally feeling yuk and significant cognitive and depression problems. Due to the severity of Phase II herx I have experienced, Dr Marshall gave me the option of using a less potent combo of antibiotics for awhile, to get down my total bacterial load (and thus reduce my herx level, if it becomes intolerable). I have only myself to blame for the severity of my symptoms I am currently experiencing - since I have been too stubborn to accept this offer. I still have faith - that since my current herx were my pre-MP symptoms, it only makes sense that I must experience them as herx, if I hope to get rid of them. ie. If CWD has caused inflammation (Pre-MP) that caused me to experience these symptoms - then it makes sense that I will experience the same symptoms (in possibly even greater severity) when these CWD infestations are killed off (due to the toxins released). For these reasons, I guess we should feel thankful for the herx we experience - but as the herx becomes difficult, a sense of appreciation becomes increasingly more difficult to muster. My experience of the MP is in line with the theory, and my faith in the science has so far managed to keep me going. If you have a severe infestation, the path back to health can sometimes be dark and rough. Still, I was somewhat past "the end of my rope" when I started the MP - so I have little to lose, and so much to potentially gain. All the best, - DaveW |
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Aussie Barb Research Team
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Dear Dave Are you wanting to accept the offer, as it still stands.. there is nothing to gain by being too tough on yourself... let us know.. all best Dave, Barb .... |
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DaveW Member
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Thank-you Barb, I will keep it in mind if the going gets too rough. Regards, - DaveW Last edited on Sat Jan 29th, 2005 18:15 by DaveW |
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DaveW Member
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Update Hello (((Good Folks))), I am in phase two now and this is my first report in quite some time on the main board. I struggled with the first (added) antibiotic in Phase II, to the point where I followed the advice of Dr M and board staff - and tried a different (milder) antibiotic that is milder, but not normally introduced until later stages. I am still struggling with the herx from the initial starting dosage of this milder antibiotic. The herx in stage II can be very marked and pronounced. My (personal) major herx symptoms of brain fog, depression and anxiety are still my major struggles. It has also become clear to me, that it will be some time for me (months to years) - before I start feeling significantly better on a consistent basis. I think this is because we will not allow ourselves to feel better. As soon as we do, we ramp up the antibiotics (until we suffer from significant herx again). I also suspect that my difficulty adjusting and ramping is a reflection of a very severe infestation (for me personally), that will take some time for me to eradicate. On the Up side - this also means that there is potential for me to have incredible improvements when this severe infestation is finally eradicated. Even though I insist on always experiencing herx (and feeling quite poorly as a result), I have noticed the following undeniable improvements; My circadian rythyms are changing - I find myself more wide awake and starting to get hungry in the mornings - and actually getting tired as bedtime approaches. My bowels keep approaching more normal as time progresses. My sensitivity to foods is decreasing (which is leading me to eat more - and making me fat!). Although I don't need the extra weight, it is very nice to be able to eat a greater range and quantity of food, without it making me feel rotten. I have experienced a couple days (and sometimes even just a few minutes) when I have felt much better (physically and mentally) than I have for years - which helps me retain my conviction and faith in what is to come. I certainly have not lost faith in the MP. In fact - the more misery and struggle you feel as a result of tiny quantities of antibiotics - the more evident it becomes that you suffer from CWD bacterial infestations, and the validity of the MP is reinforced. I have now been on the MP for 7 months, and its science and predictions of a patient's experience keeps holding true. My faith is increasing - but I must admit that there are times when I have felt so poorly - that I could not help but question. I have considerable patience (and really - what choice do I have?), so as long as I am reacting and keep sensing that I am progressing - the long time frame for complete eradication does not deter me. It took me 18 years (or likely much longer) to build up this infestation, and it has effectively destroyed my life. Relative to the time period that I have been sick - two to three years to achieve eradication and to regain my health and life is still a small price to pay. Besides, I have seen no alternatives that even begin to offer the same hope. Regards and best wishes, - DaveW |
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Aussie Barb Research Team
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Thank You Dave, so much of what you say rings true for me also.. I am seeing that this is going to take me sometime, and I am now being forced to see just how truly sick my body is, has been.. what a great job we have done to do all we have done in the circumstances.. I know it has been tough going... and we are getting a chance at Life that we heretofore have never had!! Barb ... |
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Jill Member in Phase 2/3 
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Dave, Thanks for posting back here again, I've been wondering how you have been doing. It is a long haul, especially if we have had this for years and have no life, so very worth it. Keep posting here when you can. |
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