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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Markt's progress updates |
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Markt9452 Member in Phase 3
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Benicar posts MP meds: Benicar 40mg q6h, Minocycline 25 mg every 48 hours - Day 1 Non-MP palliative med use: None Natural Light exposure: 1.5 hours per day with NOIRS covered up Symptoms: Brain Fog - 6.5 Fatigue - 6.5 Skin - 3 Tinnitus - 3 Light sensivity - 5.5 Red eyelids - 4 Memory Loss - 5 Swelling of Mastoid - 2 Joint Pain - 3 Twitching - 3 Irritability - 5 Vertigo - 4 Headaches - 3 Comments: First Dose of Mino at 18:00 Feb 20 2008 after 1 week on Benicar |
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Foundation Staff .
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Thanks for letting us know you have started minocycline. Please review the information threads pinned to the top of this forum so you will be able to independently locate answers to frequently asked questions. See What should I know about Minocycline? During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. It may take 2 weeks to feel the effects of minocyline when you begin taking it. Until you know, it is best to err on the side of caution. Stay at each subsequent dose level for a minimum of 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms. An increase in any symptom that correlates with MP therapy is due to immunopathology. This can be controlled by careful management of MP medications and palliative meds as needed. Let know how it goes......... |
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Markt9452 Member in Phase 3
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MP meds: Benicar 40mg q6h, Minocycline 25 mg every 48 hours - Phase 1 for 17 hours Non-MP palliative med use: None Natural Light exposure: 1.5 hours per day with NOIRS covered up Symptoms: Brain Fog - 6.5 Fatigue - 6.5 Skin - 3 Tinnitus - 3 Light sensivity - 5.5 Red eyelids - 4 Memory Loss - 5 Swelling of Mastoid - 2 Joint Pain - 3 Twitching - 3 Irritability - 5 Vertigo - 4 Headaches - 3 Comments: Mino response almost immediate. Feels like a cold without the mucous and is tolerable - expecting more IP as level of mino decreases Noted |
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Markt9452 Member in Phase 3
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MP meds: Benicar 40mg q6h, Minocycline 25 mg every 48 hours - Phase 1 for 1 week Non-MP palliative med use: None Natural Light exposure: 1 hour per day with NOIRS covered up housebound Symptoms: Brain Fog - 5 Fatigue - 5 Skin - 2.5 Tinnitus - 3 Light sensivity - 5.5 Red eyelids - 3.5 Memory Loss - 4 Swelling of Mastoid - 2 Joint Pain - 2 Twitching - 3 Irritability - 4 Vertigo - 4 Headaches - 3 Comments: Monocycline IP is decreasing after 1 week at 25mg/48 hrs - will increase mino to 50mg/48 hours to increase IP Exposure of the eyes to any kind of radiation corresponds to vertigo, memory loss/confusion, headaches, red eyes, brain fog, fatigue Minocycline herx is worse after 24 hours causing cold sweats, shakes, cold-like symptoms without mucous. Noticable improvement in the jaw/mastoid, inner ear and skin. |
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Foundation Staff .
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You are responding as expected to pulsed minocycline..... Based on your report, you could increase mino to 50mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the low enough/high enough dose level of minocycline that works for you is part of the experience gained throughout the MP journey. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds. Stay at each subsequent dose level for a minimun of 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms. Let us know how it goes........ |
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Markt9452 Member in Phase 3
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MP meds: Benicar 40mg q6h, Minocycline 50 mg every 48 hours - Phase 1 for 2 weeks Non-MP palliative med use: None Natural Light exposure: 1 hour per day with NOIRS covered up Symptoms: Brain Fog - 5 Fatigue - 5 Skin - 2 Tinnitus - 3 Light sensivity - 5 Red eyelids - 3 Memory Loss - 4 Swelling of Mastoid - 2 Joint Pain - 2 Twitching - 2 Irritability - 3 Vertigo - 3.5 Headaches - 2 Comments:Expected increase in IP after increasing Mino to 50mg q48h. Lesions around eyelids dissapearing. Decreased light sensitivity. Eyelids less red. Decrease in twitching, irritability vertigo and headaches. General increase in quality of eyesight, resolution, color and peripheral vision. Lot's of mild lower abdominable pain in liver and pancreas area associated with vertigo and fatigue. Healing sensation on shins, forehead, back of skull and mastoid area. Plan:Stay at 50mg mino q48h for another week and reassess IP. |
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Foundation Staff .
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In phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit. You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs. Keep up the good work........... |
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Markt9452 Member in Phase 3
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MP meds: Benicar 40mg q6h, Minocycline 50 mg every 48 hours - Phase 1 for 2 weeks Non-MP palliative med use: None Comment: Monocycline results in maximum IP at around 5 and 30 hours. At 48 hours the IP is less but still present. This is very consistant. Question: Is there any advantage in maintaining the low tissue concentration of minocycline at 48 hours by increasing to 72 hours given the fact that herx is still occurring after 48 hours? I have not suffered intolerable IP yet so I am not trying to increase or decrease the herx but rather trying to determine the optimal tissue concentration of minocycline after 48 hours in terms of killing bacteria. |
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Chris Moderator
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Is there any advantage in maintaining the low tissue concentration of minocycline at 48 hours by increasing to 72 hours given the fact that herx is still occurring after 48 hours? This can vary a lot. There were times I ran to 72 hours to get a bit more herx when the herx was mild, or the full dose didn't seem to taper off fast enough to provoke killing in the 48 hours, and there were times when 48 was a must, as the next dose of antibiotic was needed to quell the not-very-mild-at-all herx as the my body got very competent at killing bugs by itself. Now's a good time (low herx) to see what happens if you miss a day. Just don't expect the same result at other dose levels or other antibiotics, or other stages in the process. It's your body, and your unique problems. Get used to being proactive in figuring out what works and doesn't for you. And don't exceed the guidelines; they are there for a reason (max dose, no supplements, light discipline, etc.). |
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Markt9452 Member in Phase 3
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Thanks for the info. Chris - good stuff MP meds: Benicar 40mg q6h, Minocycline 50 mg every 48 hours - Phase 1 for 3 weeks Non-MP palliative med use: None Natural Light exposure: 1 hour per day with NOIRS covered up Symptoms: Brain Fog - 5 Fatigue - 5 Skin - 2 Tinnitus - 3 Light sensivity - 4 Red eyelids - 3 Memory Loss - 4 Swelling of Mastoid - 1.5 Joint Pain - 3 Twitching - 3 Irritability - 3 Vertigo - 3.5 Headaches - 2 Comments: I am experiencing quite a bit of sensations all over my body - I wouldn't call it pain - It just feels like things are changing. Lots of twitching lower back above kidneys, Sensations in all wisdom teeth sockets, mastoid, legs, lower abdomen, ears, sinuses, eyes, skin. Some bilateral pain top of feet just behind little toe. Joint pain in knee has increased particulary in area where arthroscopic surgery was done - as expected. Lots of itchy skin. Things generally going well - herx comes and goes. Sleeping a lot. 48 hours seems to be the perfect amount of time for mino. I am herxing and it is making me feel better - kind of hard to describe but as expected. I am finding it harder to find the right words sometimes and twitching is a bit worse - but again - this is as expected. Vision has profoundly improved in every way. Plan:I'm going to go to minocycline 75mg q48h within the next couple of days. Thank You for making a difference in my life. Mark Last edited on Tue Mar 11th, 2008 00:41 by Markt9452 |
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Foundation Staff .
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Thanks for letting us know you will be ramping to 75mg mino.... It is important that you become independant in medication management and gain experience by adjusting MP meds using your personal tool kit to manage immune system reactions. This skill will carry you smoothly through the protocol. If symptoms are approaching intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (sun exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap. As always, if our information does not provide the answer for you, please ask before you take action. Carry on......... |
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Markt9452 Member in Phase 3
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MP meds: Benicar 40mg q6h, Minocycline 75 mg every 48 hours - Phase 1 for 26 days Non-MP palliative med use: None Natural Light exposure: In the house with low light Symptoms: Brain Fog - 5.5 Fatigue - 5 Skin - 2 Tinnitus - 3 Light sensivity - 4 Red eyelids - 4 Memory Loss - 4.5 Swelling of Mastoid - 1.5 Joint Pain - 3 Twitching - 3 Irritability - 3 Vertigo - 3.5 Headaches - 2 Comments: I am doing OK with mino 75mg q48h. Some increase of neurological symptoms. Sleeping a lot. Plan:I'm going to go to minocycline 100mg q48h within the next couple of days. |
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VEZ R.N. Health Professional
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Thanks for the update M. From your report it looks like you are managing well. Your plan sounds like a good one. You are doing a nice job. Best Regards, VEZ |
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Markt9452 Member in Phase 3
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MP meds: Benicar 40mg q6h, Minocycline 100 mg every 48 hours - Phase 1 for 33 days Non-MP palliative med use: None Natural Light exposure: In the house with low light Symptoms: Brain Fog - 6 Fatigue - 5 Skin - 2 Tinnitus - 3 Light sensivity - 5 Red eyelids - 4 Memory Loss - 5 Swelling of Mastoid - 1.5 Joint Pain - 3 Twitching - 3 Irritability - 3 Vertigo - 4 Headaches - 3 Comments: 100 Mg Mino is packing quite a punch. Lots of activity in the jaw and ears. Some increase in symptoms. Plenty of herxing. Vertigo is more frequently the objective kind. Urine is greenish and cloudy. Symptoms much worse at night Thank You - Mark |
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Foundation Staff .
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If symptoms are approaching intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (sun exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap. The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly. Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster. If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every 3-4 hours will not work. If intolerable symptom/s persist, increase oral 40mg Benicar to every three or fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable. During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation. If increasing Benicar does not reduce intolerable symptoms, adjust mino to dampen symptoms.......take an extra dose, skip a dose, or take low-dose, high-frequency minocycline. As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action. Increase fluids and assess urine for color and clarity. Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed. Let us know how you are doing..... |
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Markt9452 Member in Phase 3
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MP meds: Benicar 40mg q6h, Minocycline 100 mg every 24-72 hours - Phase 1 for 40 days Non-MP palliative med use: None Natural Light exposure: In the house with low light Symptoms: Brain Fog - 5 Fatigue - 4 Skin - 2 Tinnitus - 3 Light sensivity - 4 Red eyelids - 3 Memory Loss - 4.5 Swelling of Mastoid - 1.5 Joint Pain - 4 Twitching - 3 Irritability - 3 Vertigo - 3.5 Headaches - 3 Comments: Taking mino at 100mg q72h today after some decrease in herx and Th1 symptoms at q24h. White round lesions on eyelids get worse and then disappear overnight. Nice. The necklace of red and white spots and splotchy red skin around my collarbone area is almost gone now. Very Nice. Lots of pain in the Jaw behind wisdom tooth socket - I believe the connective tissue and bone is heavily infected there because there is less blood supply. This is very close to my ear, eustacian tube, mastoid area. I believe this started long before the tooth was extracted. X-rays show nothing. The pain is obviously a good thing. Plan: I will be taking mino 100mg q24-72h in order to maximixe herx within tolerable limits. I'm pretty familiar with what the mino does to me now and feel very confidant about managing IP. Question: I have a lot of pain in the armpit area but only when I'm laying in bed at night. The pain leads to my arms falling asleep as if there wasn't enough circulation. It's very strange. I can't tell if it's my lympth nodes, a nerve, the joint or a restriction of blood. Or all of the above? This got really noticable after I started removing vitD foods a few months ago and before the MP. It got better after the Benicar but after I started the mino it is getting worse. I end up sleeping in the strangest positions just to stop my arms from falling asleep. On my side with one arm on top of my head. On my stomach in a praying mantis kinda position with my arms tucked underneath. What ends up happening is that one arm falls asleep and then I roll over to give it a break (but then the other one falls asleep) - so I'm constantly having to shift positions all through the night - I'm not particularly worried about it as I am sure as it's part of my own unique illness and healing process. I just thought I'd mention it just in case you have seen that before. If I had to guess I would say it has something to do with inflammation on the nerves in that location as opposed to my other ideas. Thank You Meg, Vez and Chris Rock On Dr M - Mark |
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Foundation Staff .
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Mark, based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. Before you proceed to phase two, ask your doctor about the tests you need to monitor your progress on the MP. Pins/needles or numbness in extremities suffered during sleep is thought to be due to lymphatic system inflammation and reduced lymph circulation when in a prone position leading to interference with nerve function. Moving the extremity resolves the sensation quickly. See Will the MP treat paresthesia and neuropathy? Keep up the good work.......... |
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Markt9452 Member in Phase 3
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MP meds: Benicar 40mg q6h, Minocycline 100 mg every 48-72 hours - Phase 1 for 46 days Non-MP palliative med use: None Natural Light exposure: In the house with low light Symptoms: Brain Fog - 4 Fatigue - 4 Skin - 2 Tinnitus - 2.5 Light sensivity - 3 Red eyelids - 3 Memory Loss - 4.5 Swelling of Mastoid - 1 Joint Pain - 3 Twitching - 2.5 Irritability - 3 Vertigo - 3.5 Headaches - 3 Comments: I am now taking Mino 100mg alternating between 48 and 72 hours. The immune response is quite different depending on whether the last dose was 48 or 72 hours previous. I have an appointment with my Doc on the 14th of April. I will discuss the phase II antibiotics and the potential for increased neuropathy with him. I will also discuss relevant progress monitoring tests. The paresthesia has gotten better this week and I believe it is related to IP from the Mino. The paresthesia is worse as the level of mino decreases. Thank You Meg and the Marshall Protocol Research Team.... Mark Last edited on Sun Apr 6th, 2008 23:49 by Markt9452 |
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Markt9452 Member in Phase 3
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Comments: Experiencing some bright red rectal bleeding this morning after eating garlic the night before. I am using some links I have found on the MP forum to evaluate. Apparantly this is not unusual given the circumstances and is not a surprise. Also I ate a piece of Quiche Lorraine yesterday . This was my first deviation from the MP diet in months. I have now learned my lesson. |
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Foundation Staff .
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Bright red bleeding usual indicates local trauma. Please see I’ve developed rectal bleeding. What should I do? Let us know how you are doing........ |
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Markt9452 Member in Phase 3
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I think that it's probable that my 25D is approaching the 12ng/ml level or has reached it as it was 18.4 when I first started the D reduced diet. My character of my herx is changing. I am feeling pain in the nerve that runs down the back of my right leg and terminates in the area of the Bakers Cyst on the back of my knee. The Bakers Cyst is receding and I am quite optomistic about the new changes including the bleeding which I think is a result of inflammation of the nerves in that area. The common denominator in my new symptoms seems to be that the nerves are being affected. I am certain this is as expected and in fact good news. Mark Noted |
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Jeannine Board Staff
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Hi Mark, Good to know you are seeing these changes. Can you please describe the bleeding? I assume it is tolerable, has stopped bleeding or is intermittent. Jeannine |
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Markt9452 Member in Phase 3
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MP 57 days Hi Jeannine I am experiencing small amounts of bright red blood after defacation. The source appears to be the rectum or anus. There is minimal amount of irritation in this area and the blood is only visible after defacation. Stools appear somewhat thin, loose and are not maroon in color. No clots are visible and no structural abnormalities are evident. I am attributing the bleeding to normal activation of the immune system causing inflammation within the tissues where the activation occurs. Thanks Jeannine Mark Thanks for the clarification. Noted. |
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Markt9452 Member in Phase 3
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April: Started Phase 2 MP 61 days This protocol is going quite well. Everything as expected with no surprises. I am getting better. MP 75 days Comments: This seems to be the pattern - I experience some increase in IP followed by an improvement afterwards. I think most of the healing right now is happening in my ear, jaw, brain,eyes and nerves. The affect on my imaging systems is profound to say the least. Color, clarity, resolution, peripheral vision, focus are all greatly improved The sockets where my wisdom teeth were extracted have all re-healed themselves although my dentist had told me that they were fine I knew something just wasn't right. I have reached a point where I actually look forward to the antibiotics, stabbing pains or an increase in IP because this is always followed by an improvement particularly in brain function. I think I started the MP at the exact moment that I fell off the cliff so to speak. That makes me a very lucky person. Previously I could see the light at the end of the tunnel. Now I am feeling a bit of the warmth from that light as it get's closer. This is very nice. MP 89 days Comments: I have just switched from taking compounded Olmesartan purchased from The Glebe Pharmacy in Ottawa to to the Montreal product. There is an obvious difference. I experienced full body rushes, insomnia, fatigue, tinnitus, vertigo and general feelings of hormonal readjustment about an hour after taking the Montreal Olmesartan and this continues. I'm not really sure what to think about this. I feel worse but my eyelids are slightly less red. Inflammation in the ear and fatigue has increased. Parathesia has decreased. The progress I am making is contrasted with an increased awareness that I am much sicker than I realized particularly in the neurological realm. I seem to have a better perspective on certain negative elements of my personality specifically; Intolerance, Opinionated, Anger, Obsessive. I seem to be relating to people in my life in a much more gentler and caring manner this week but I have still needlessly pissed off a couple of people in a couple of incidents where I was trying to enforce my version of reality in a confrontational manner. I will have to re-learn how to express myself in a more appropriate, less confrontational, constructive manner. I am experiencing some noticeable improvements as a musician including; increased coordination, timing, increased complexity in composing, heightened awareness of tonal relationships on the fretboard, increased accuracy and speed in finger picking. I have been successful this week at integrating a percussive tapping technique into my playing style that involves some very precise timing. This is a huge breakthrough for me. MP 96 days Comments: Rolling along... Lot's of healing sensations inside my ears and mastoid. Something good is going on in there. MP 110 days Comments: Things are going well. I'm getting more familiar with phase 2. Healing sensations have increased and IP is just about right. MP 117 days Continued improvement in symptoms. The larger dermafibromatic lesions on my shins and eyelid areas are noticeably softer and have decreased in size by about 20%. There is the general feeling that the healing is slowly starting to gain some momentum particularly in my ears, skin, nerves and joints. I am feeling much more relaxed. I am also more sociable and tolerant. The occassional sharp electrical shock sensation that ran from my mastoid to my feet is gone. Paresthesia is quite different now. My arms and legs are not falling asleep anymore during sleep. Still a bit numb though. Memory loss has increased. I am having trouble remembering the names of people that I know very well. This is contrasted by an increased ability to think in complex terms and solve problems. I have not had swelling of the ankles or pain on the bottom of my feet in quite a while. Panic attacks/Anxiety/Racing heart has decreased in severity by about 75%. My heart rate sometimes gets a bit higher but I don't get that rush of anxiety chemicals/Adrenalin so much anymore. The frequency or pitch of the tinnitus is of a lower value and volume. MP 124 days Palliative meds: None Light exposure: 2 hours per day covered with noirs. Symptoms: Brain Fog - 3 Fatigue - 5 Skin - 2 Tinnitus - 2 Light sensivity - 2 Red eyelids - 2 Memory Loss - 5 Swelling of Mastoid - 1.5 Joint Pain - 2 Twitching - 0 Irritability - 1.5 Vertigo - 3.5 Headaches - 1.5 paresthesia - 1 Abdominal Pain - 1.5 Malaise - 4 Comments: I am experiencing a new kind of herx. Pain in the region of the descending colon and general belly button region. The left side of the abdomen just hurts. The lower frontal abdominal pain feels like an intense burning hunger. I have had this before when I was around 9 years old - It's a strange enough feeling that I can clearly remember the first time I experienced this on a camping trip 32 years ago. It would occur always in the morning after waking up. Now it is back and occurs off and on. This kind of herx was completely expected. I have added abdominal pain and malaise to my symptoms list above. Malaise being defined as feeling "out of sorts" as compared to fatigue which is feeling tired. Also - One of my stranger symptoms is completely gone - Every morning - literally seconds after coming out of sleep, either one or both of my calf muscles would flex and then contract and would not relax. Occasionally this would spread into the entire back of the leg. The pain was excruciating and would literally have me rolling on the floor in pain until the muscles relaxed. Occasionally I would have to massage the muscles to relax - this was done in a frenzy of pain rather than the usual relaxing kind of massage. I've had that since I was a teenager and over the years I learned that the first thing to do upon waking was to consciencely make an effort to stop this from happening. Some issues with sleep patterns being all over the map right now. My body still wants to be completely spent of energy before retiring. This is an established pattern with me. I'm not good at slow and steady. I have tended to accomplish tasks with a sort of "going into battle" mode - followed by burnout. Swelling of the lymph nodes in throat greatly diminished. Some weird neuropathy this week - I have never had a dyslexic incident until after cutting back the D foods. This doesn't happen very often - but a couple of times this week some letters were obviously reversed - but only for a moment. My skin appears to be a couple of shades darker and I am developing a slight tan all over my body. This is not only unusual because of my lack of sun exposure but because I have had intense extended periods of sun exposure in the past and was always white as a ghost regardless. I am not as light sensitive anymore in the sense that light doesn't hurt my eyes as much anymore. I am sensitive in the sense that I am intensely aware of any sources of radiation. If a dim beam of light sneaks through the window blinds and hits my body I am instantly aware of it in a very physical way as if being touched. Light still causes Neuro IP and headaches. I always try to grow fingernails on my right hand longer to play the guitar. They would usually break before they would get as long as I liked. I couldn't break them now if I tried - and I have. Actually I find myself cutting them back all the time because they are growing so fast. There is nothing remotely brittle about my fingernails now. I have not used Head and Shoulders for weeks now - I did not think this was possible before. I can't remember the last time I had a twitch or tremor in my hands or face. Dermafibromatic lesions continue to resolve slowly and steadily. Tinnitus is now the occassional very dull roar - like listening to a seashell - only noticable before sleep when it is very quiet. I can't find the Bakers cyst on back of my right knee anymore - It's hard to tell if it's completely gone because the knee joint is not swollen anymore. Thank You MP Research Team!! Mark |
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Markt9452 Member in Phase 3
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MP 131 days Palliative meds: None Light exposure: 2 hours per day covered with noirs. Comments: I have not had a single cold or flu since I stopped Vitamin D foods last fall. While working in an office environment last winter and spring I made some observations about my co-workers. All 30 of them without exception suffered colds and flus. Some of them were sick multiple times. I was the only person not to get sick. MP 138 days Symptoms: Brain Fog - 3 Fatigue - 6 Skin - 2 Tinnitus - 2 Light sensivity - 2 Red eyelids - 1.5 Memory Loss - 5 Swelling of Mastoid - 1.5 Joint Pain - 3 Twitching - 0.5 Irritability - 3 Vertigo - 3 Headaches - 1.5 paresthesia - 0.5 Abdominal Pain - 3 Malaise - 6 Comments: 25HYDR 10.4 (Nov 6 2007 = 18.4) 1-25DIHY 19.6 (Dec 11 2007 = 50.8) |
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Rico Moderator
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Mark, I, too, have not had any colds or flus ... since starting the MP just over 2 years ago. Ok, I did have a minor cold once but it lasted one day - unheard of for me before that - those darn things would always last for a week or three. Nonetheless, I used to get colds/flus at least twice a year. Vastly improved even when in close contact with many others with them! I guess the immune system is just working much better now... |
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Markt9452 Member in Phase 3
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Rico - Before the MP I would catch every single cold or flu that was going around. And just like you said they would last for weeks. My innate immune system wasn't working. It just wasn't possible for the VDR to transcribe properly when my receptors were full of extraneous Vitamin D and bacterial ligands. It seems to be working quite well now though. Thanks Rico Mark |
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Markt9452 Member in Phase 3
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MP 145 days I am feeling very tired. My sleep pattern is reversed and I am experiencing lots of activity in the prefrontal cortex during sleep. My memory is increasingly photographic - If I can't remember something - I sometimes see it's picture instead although I may not know what it is. I have a new strange symptom. As soon as my head hits the pillow - I start to salivate - a lot - I have to keep swallowing so that I don't start drooling. At the same time I start to cough up fluid from my lungs. Peripheral neuropathy has increased and it is hard to hold my arms up for any length of time. The lumps in my earlobes are completely gone. Fluttering and spasming inside ears has gone from 7 to a 1. Hot showers are making me feel better. I am frequently ravenous - sometimes even after I have eaten. Appetite is excellant. I have stopped craving chocolate and am enjoying more fruit/vegetables. Lesions on shins have started to itch somewhat - That is a first. They are still slowly shrinking. I think malaise is the best way to describe how I am feeling now. I am motivated but can't do very much. Irritabiliy has gone to a 5 - I just can't deal very well with people right now. I am monitoring neuro IP very carefully, taking it easy and avoiding stressfull situations. My previous experience with the MP is telling me that I am now experiencing massive bacterial killing with all the associated IP. MP 152 days I am feeling optomistic and confident. Subcutaneous nodules are resolving rapidly. Fibrotic lesion on right shin has gone from 2 cm to 4 mm diameter. MP 159 days All kinds of IP happening everywhere!! - Symptoms are tolerable. Lot's of activity in jaw, mastoid and back of skull. Small round opaque lesions on back of hands are gone. MP 180 days - 6 Months Symptoms: Brain Fog - 5 Fatigue - 5 Skin - 2 Tinnitus - 2.5 Light sensivity - 3.5 Red eyelids - 1.5 Memory Loss - 4 Swelling of Mastoid - 2.5 Joint Pain - 3 Twitching - 1.5 Irritability - 1.5 Vertigo - 4 Headaches - 1.5 paresthesia - 1 Abdominal Pain - 0.5 Malaise - 5 Comments: I am experiencing slow steady improvement everywhere. It is my observation that health problems that I wasn't aware of are being are brought to the surface or uncovered and then start to heal. I've still got a long ways to go but the progress is consistant. I have a lot less to say about things these days. My perspective is different now and it feels as if I am seeing a lot of things for the first time and I am having to re-evaluate and re-learn. |
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Markt9452 Member in Phase 3
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Phase II Level 3 MP 187 days Comments: More improvements this week. I am extremely confidant in the effectiveness of this treatment and I am feeling very determined. MP 194 days Comments: All is well. MP 215 days Comments: Another occurance of dermatitis associated with healing of troublesome joint. My big toe feels great - is releasing lots of nitrogen and the dermatitis is going away now. I'm doing really good. I just wish I wasn't so tired all the time as I have lots of things I want to do. I walked about 4 miles the other day. It was fine. I am gradually less light sensitive now. 215 days on the MP and everything is happening exactly as predicted by the MP. Phase II Level 4 MP 229 days Comments: I am experiencing an increase in IP as a result of the change to level 4. All symptoms tolerable. Phase III, Day 2 MP 243 days Palliative meds: None Light exposure: 2 hours per day covered with noirs. Symptoms: Brain Fog - 3.5 Fatigue - 6 Skin - 2 Tinnitus - 2 Light sensivity - 3 Red eyelids - 2 Memory Loss - 3.5 Swelling of Mastoid - 2.5 Joint Pain - 2.5 Twitching - 1.5 Irritability - 2 Vertigo - 3.5 Headaches - 1 paresthesia - 3 Abdominal Pain - 3 Malaise - 3 Phase III, Day 9 MP 250 days Comments: Symptoms tolerable. ABX seem to be affecting Urinary tract, prostate, neuro. Skin continues to improve. Subtle light sensitivity changes (Overall less sensitive - sometimes the room suddenly seems brighter). Generally I'm in a bit of a daze - but it is tolerable and I am as motivated and confidant with the treatment as ever. Creativity is way down right now but it comes and goes anyways - instead - I am reading about 8 hours a day. I have found the best way to measure my neuroherx is "texas hold em poker". Not very scientific but the game seems to expose any problem areas in regards to memory/appropriate decision making/emotional response/patience/creativity/Math. Phase III, Day 16 MP 257 days Comments: All kinds of subtle skin changes on upper chest region and armpits. Recurrent Sebacious Cyst on left side of face has ceased production of sebum and is barely detectable. Crawling under the skin sensation on shins. Increase in floaters. Some sensation of fluid running down back of head. Increased pain in large joints. Some feelings of confusion. Irritability is down to a 1. Phase III ABX resulting in increased herx, neuropathy and parethesia which is exactly what I expected and all symptoms are tolerable. I'm getting the impression the bugs really aren't enjoying the abx combo. Phase III, Day 23 MP 264 days Comments: Massive IP on Days 8-10 of ABX cycle. Lot's of hot/cold sweats, trembling, twitching, poor appetite, confusion, blurred vision, sore back and neck, burning sensation in tissues, intoxicated feeling. I am pleased about this although it's not so much fun. Fibrotic Lesions on shins resolving more rapidly. These only got larger pre-MP. Brain function reminiscent of start of phase 2 with confusion and memory loss contrasted by increase in analytical function and reasoning (poker stack has gone from $5 to $25 in 1 week). Lots of pain in Mastoid,ear canal and back of skull area contrasted by healing sensations drainage and decrease in swelling of surrounding tissues. I can only find two of the small (rasberry colored 2-4mm ) sarc lesions. There used to be a lot more. Sensation of hearing in stereo for first time yesterday. If it is the intent of this protocol to provoke IP we are certainly succeeding. Symptoms very uncomfortable but tolerable. Thank You M.P. Research Team Mark |
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Markt9452 Member in Phase 3
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Phase III, Day 30 MP 271 days I am getting the impression that the hearing issues are more of a hormonal problem than I suspected. Cold sweats and parasthesia are subsiding which means it might be time to increase again. I am generally more organized now although still easily confused. My whole body seems to vibrate - usually around 9pm-12am. At first I thought the furnace was broken - but no - it's me. The IP is now affecting my entire body and there is the distinct sensation of healing everywhere. Prostate and Urinary tract are affected by every ABX increase. Involuntary emotional expression greatly reduced. Frontotemporal dementia - Is a painful thing to realize for any number of reasons- I am at least aware of this now which is an improvement in itself. I look healthier Symptoms very uncomfortable but tolerable. I am pleased with my progress. Phase III, Day 37 MP 278 days Comments: Continued hearing improvements. Skin is healing more rapidly again. Dermatitis is almost always associated with healing in that area. Very consistant. Resolution of signs is directly proportional to IP symptoms - very obvious pattern. Sleep patterns starting to normalize. I have felt more rapid hormonal improvements since starting phase 3. Now that I understand the hormonal relationship to symptoms it makes me that much more confidant in my chances at complete symptom resolution. I walked 3 miles yesterday with no pain in my knees. That is a first. I am doing a much better job at taking care of myself this week. Plan: IP has diminshed somewhat so I guess it's time to ramp again. Thank You M.P. Research Team Mark |
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expate Member in Phase 3
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Markt9452 wrote: Phase III, Day 30OK, somehow, forgive me, I found this amusing... maybe because I've been there. |
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suecat Member in Phase 2
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Odette, Mark I vibrate horribly due to lots of nerve involvment. I can hardly be on my feet without serious reprecussions now. It's so depressing. I gimp from bed to chair and have no ability to exercise anymore, let along stand on my feet.. I used to exercise daily and now i'm completed "benched" I tried a new pair of orthodics the other day believing the increased cushion(suited for diabetics) would spread the pressure points out better (which in theory it should) and OMGosh my nerves went crazy. I was upright in them for about 30 minutes doing a backload of dishes...when i finally gave it up and liteally collasped. My nerves started "spasming" so severely that they were contracting in my face making me grimace in ways that were very unattractive and uncontrollable. It finally subsided after rest and nuertoin med. This was the worst reaction I've had but I've had lots of situations like this happen that is why I have redined my limits now to nil activity. Very freaky. Thanks for letting me share I sometimes can't grasp the enormity of this illness. We just had family here and who can understand this when even I can't. The holidays bring everything mentally/emotionally to a horrific reality. Soldiering on, sue Last edited on Sun Nov 30th, 2008 03:12 by suecat |
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expate Member in Phase 3
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Sue, I can't even imagine the intensity of your reaction. Or, well, maybe I can. My experience with that sort of whole body vibrational involvement has been transitory, tangential. I cannot imagine what it would be to have it descend upon me in any solid, semi-permanent way. This experience for me has lasted, max 2 hours. Hang in there. I think it's a good sign that your family has members "who can understand this when even I can't". Let them help you through this. All best wishes, Odette |
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Dr Trevor Marshall Research Team
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Sue, if the Neurontin is palliative when you take it, it might also tend to exacerbate the symptoms as its concentration drops in your body, between doses. This drug was initially developed for epilepsy, and you might talk with Doc about possible side effects on muscle control Have you had your 25-D measured recently? When that drops through the 20 ng/ml region your immune system may become less stable. |
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Markt9452 Member in Phase 3
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Phase III, Day 44 MP 285 days IP increased after raising phase III antibiotics and then decreased. I am near the end of this cycle and things are tolerable so I will increase. The neuro IP can be frustrating at times as it seems to create an over dramatization affect on cognition and the way information is processed. Things seem like a "Big Deal" when they probably shouldn't be and I come up with all kinds of "wild theories" about things. I am much more aware of this which tells me that cognition is improving. As the dosage of phase III antibiotics rises it causes increased IP - but there is also a comforting affect - as I can feel it working at much deeper levels now and I know the bugs are getting worked over really good. I have the general feeling that I have reached some point in the healing process in which the worst part has been passed. We shall see. This treatment is working incredibly well right now. Thank You M.P. Research Team Mark |
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Markt9452 Member in Phase 3
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Phase III, Day 51 MP 292 days Symptoms: Brain Fog - 3.5 Fatigue - 5 Skin - 1.60 Tinnitus - 0 Light sensivity - 3 Red eyelids - 1 Memory Loss - 2.5 Swelling of Mastoid - 1 Joint Pain - 2 Twitching - 1.5 Irritability - 2 Vertigo - 1 Headaches - 0 paresthesia - 2 Abdominal Pain - 1.5 Malaise - 3.5 Comments: Consistant sustained improvements. Positive changes in Fibrotic tissue on shins happen literally "over night". A lot of burning sensation now in upper GI tract. Uncomfortable but tolerable. Lungs are starting to be affected - some mild pain and coughing. I am sleeping a lot - which seems to happen when improvements are more rapid. |
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Markt9452 Member in Phase 3
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Phase III, Day 205 MP 445 days Palliative meds: None Light exposure: 5 hours per day covered with noirs/bolle, Knochen's sunscreen, leather hats, turbans. Symptoms: significant only Total Herx - 3.70/10 - General Systemic IP Comments: I have lowered all ABX to decrease IP as it is almost summer here now and I must be outside to survive. Still herxing with greatly reduced light sensitivity. I am not in remission. The disease process has not been slowed or stopped. In fact the disease process has been reversed and I am being cured. The improvements are so profound that I am hesitant to list them as I am completely flabberfasted at how sick I was and didn't even realize the extent of it all. Thank You MP Research Team Mark |
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Dr Trevor Marshall Research Team
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I am completely flabbergasted at how sick I was and didn't even realize the extent of it all Yup. And the strange thing is, your mind hasn't really even begun to comprehend where your recovery will end up. That will take another few years of incremental 'perfection.' |
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Markt9452 Member in Phase 3
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Phase III, Day 212 MP 457 days Palliative meds: None Light exposure: 3-7 hours per day covered with noirs/bolle, Knochen's sunscreen+Ti, leather, hats, scarves, turbans. Symptoms: significant only Total Herx - 2.5/10 - General Systemic IP Comments: I am doing really well. Outside looking at birds all day today with few problems. No joint pain, swelling or sore feet at all. Thank You MP Research Team Mark |
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Markt9452 Member in Phase 3
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Phase III, Day 226 MP 466 days Palliative meds: None Light exposure: 6 hours per day covered with noirs/bolle, Knochen's sunscreen, leather hats, turbans,scarves. Symptoms: significant only Total Herx - 3/10 - General Systemic IP Comments: I am really doing well. I slept well last night. Lots of colorful lights in my eyes while sleeping. Very nice. I got up motivated and ready to go. Spent the whole day outside with minimal problems. Irritibility is extremely low. Energy is good. I am very sociable today. I am totally optomistic about the future. Still herxing - mostly at night with lots of sweating. Brain fog is greatly reduced. Last year at this time I was unable to go outside without total coverage. Now I am out with long sleeve shirt, hat and a scarf for my neck. Much cooler this way. Got my garden planted and have laundry hanging on the line. I have been outside a lot. I added a gram of Titanium to the Zinc sunscreen and it seems to completely stop the radiation completely. No fear of the sun with it on at all. Thank You Knochen!! Plan: So far so good. Keep Going. Thank You MP Research Team Mark |
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BARNEY Moderator
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Mark, What a lovely, truly beautiful report of an MPer who is getting a well. Would you please post the meds you are on/amts? Thank you. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY Last edited on Tue May 26th, 2009 03:14 by BARNEY |
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Markt9452 Member in Phase 3
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Thanks Barney MP meds: Olmesartan 40mg q6h, Minocycline 50mg q48h, Clindymicin 90-100mg q48h, Azithromycin 90--100 mg 10 day cycles. |
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BARNEY Moderator
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Thank you Mark. |
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Markt9452 Member in Phase 3
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Posted: Thu Sep 18th, 2008 06:59 at Curemyth1I'm not quite ready for vigorous excercise yet - as it causes me to herx - but I do have a goal to be playing ultimate frisbee by next spring - we shall see. I played Ultimate Frisbee for 2 1/2 hours straight this evening. Got kicked in the head a couple of times. Laid out and landed on my shoulder. Twisted my ankle. I was running around all over the place. I am not injured and my knees are not swollen. Some minor pain in right knee where the meniscus was torn. I'm not as fast or as strong as I was before but I haven't exactly been excercising either. I used to get hurt really easy just before I started the MP. It got to the point where I would land on my shoulder and it would make a horrible crunching sound followed by pain that would last for weeks. I figured my bones and joints were deteriorating. I went way better than I expected. I'll be in some pain tomorrow without a doubt. You just don't start running around after extended non activity without some pain. But no knee swelling and no crunching or damage is really good. |
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expate Member in Phase 3
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Your post makes me sooooo ready to get back into ballet class... yes, it's that brutal. But, no way I could face myself in the mirrors in a leotard just yet. It's been a year since I've been in class and ten months on the MP and... I've got 15 - 20 pounds extra. I just can't deal with it yet. And don't tell me my weight is th1. It's just the diet and being a slug. I shall return to having the body I once had. Thanks for your update, Mark. Looking forward to getting kicked about. |
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Markt9452 Member in Phase 3
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Thanks With me it was the opposite. I lost muscle mass and went from thin to skinny. I'm about 20 pounds lighter than I would like to be but my bones don't seem to be brittle anymore so now I have something to build on. It's great. Day 1 of Zith cycle too. |
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expate Member in Phase 3
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You rock! |
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Shari Gold Member in Phase 3
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Hi Mark Like Odette, your post makes me anxious for my "former" exercise junky life. Me, the avid runner, cyclist, inline skater who misses it so ... I have gone the way of thin to skinny too. Lost so much muscle mass over the the last 10 months. I used to have a runner's butt .. now it just looks "flat". I think I read the previous post of yours a while back where you alluded to wanting to play ultimate frisby around now. So great to hear you have reached your goal. It put a big grin on my face when I read it and it stayed there throughout the day when I would think about your success! Also ... you are around 6 months ahead of me (also Lyme being one of my prime Th1 culprits) so ... I am thinking I am hopefully going to be sitting in your shoes soon enough. I have really turned a corner in these beginning stages of phase 3 ... the light is at the end of the tunnel somewhat .. and your post just made me even more enthused! Congrats!!! Shari |
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Markt9452 Member in Phase 3
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Phase III, Day 240 MP 480 days Thank You everyone for your kind words. MP meds: Olmesartan 40mg q6h, Minocycline 50mg q48h, Clindymicin 100mg q48h, Azithromycin 100 mg 10 day cycles, Palliative meds: None Light exposure: 4 hours per day covered with noirs/bolle, Knochen's sunscreen, leather hats, turbans. Symptoms: significant only Total Herx - 3.6/10 - General Systemic IP Comments: I am doing well. Still improving. Very tired right now sleeping a lot. Teeth sensitivity appears to be completely gone. I have put on 5 pounds over the last two weeks. I seem to be improving at the same rate as when I was at higher levels of ABX but I have more energy and am less confused. I am doing push ups a few sets of ten per day. Some muscle twitching, tinnitus always in the evening. Thank You MP Research Team Mark |
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BARNEY Moderator
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Drink plenty of water, xtra salt (sea) (regular salt is mostly chemicals), lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!! HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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Markt9452 Member in Phase 3
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Phase III, Day 381 MP 631 days MP meds: Olmetec 40mg q6h (extra when needed always provides instant relief) Palliative meds: None Light exposure: Lots, noirs, gloves, scarf. (no sunscreen=no burn,no redness,no problem) Symptoms: significant only Fatigue - 4 Peresthesia - 2.5 (mostly underarms) Light Sensitive - 3.5 Mastoid/jaw/ear area general weirdness - 2 Muscle spasm/twitching - 1.5 (always at night now) Lyme rage - 0.2 (cool calm collective and compassionate) Comments: Protocol still working quite well. Herx is stabilizing now and is starting to be more predictable. Fatigue is the big issue now. More symptomatic at night and when I am horizontal. Many signs and symptoms from the past are now completely gone. Others are still improving. I am taking Olmetec almost exclusively now and I think this may provide a more stable predictable neuro-herx pattern than the TR. Switched to washing hair with a very dilute baking soda/water solution with much success. I am missing much grey hair now. Most of it actually. The beard seems unaffected though. So far so good. Doc says my thyroid is a bit elevated now which I think is probably about right for the IP I am experiencing. I can't imagine where I would be now without this. I am very fortunate that I diagnosed these symptoms as sarc and not Lyme (which I ignored because I thought that is only for wing-nuts Plan: Stay the course. Thank my Lucky Stars. Thank You MP Research Team and Schering Plough Canada |
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eClaire Member in Phase 2
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Yeah Mark! This is such a great report. Keep up the good work! Claire |
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