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davbrkr
Member in Phase 3
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Posted: Thu Nov 1st, 2007 09:31 |
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Is there a forum other than my own thread where I can post a question that will get the widest possible viewing audience? Here are two examples.
1. A neighbor grows asian pears (about a buck apiece in the store), and except for the shape, may not be pears at all. I receive boxes at a time. Since pears contain chlorogenic acid and, in general, must be avoided on the MP, DOSES ANYONE KNOW IF ASIAN PEARS ARE OK?
2. CWD bacterial are usually cultured in a hypertonic (salty) medium containing agar, horse serum, penicillin, etc. One reference says if you remove the antibiotic, the CWD forms don't grow. CAN CWD BACTERIAL BE KILLED IN A HYPERTONIC SOLUTION?
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Thu Nov 1st, 2007 10:53 |
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If you cannot find a suitable topic thread in the general discussion forum, it's best to post questions in your progress report since the research team reads all the reports and we want to avoid cluttering up the general discussion forum with new topics.
1. It's fine to eat pears in moderation. If you are concerned, don't eat the skin. See Chlorogenic acid.
2. What is the relevance of this question to the Marshall Protocol?
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davbrkr
Member in Phase 3
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Posted: Sun Nov 4th, 2007 04:03 |
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3 mo. –11 days in Phase I
Benicar: 40 mg Q6H
Minocycline: 75 mg/48 hrs.
Other Meds: Alprazaloam, Soma, Flomax
Supplements: None
Current Symptoms: No significant changes since last post. So far there has been no intensification of ant symptom since moving from 50 mg of Minocycline per 48 h to 75 mg. Because I have spent many days mostly in a bedroom on the north side of my home, I’ve had an absolute minimum exposure to sunlight. As a consequence, there has been a NOTICEABLE reduction in neurological symptoms.
Discussion:
Taking you suggestion to heart, I have spent more time out of bed in a recliner in the past few days. Back pain resolving slowly as has been the case for decades. I am doing some limited walking with a brace today for the first time since the most recent “injury”??? Like several others, back pain was my only noticeable Th1 symptoms for 15-20 years. When others began, however, symptoms like seizures and many others followed quickly.
Since the premise of the MP is that CWD bacteria cause our diseases, I assumed that no question about them was out of bounds - even one about hypertonic solutions! Sorry! The staff does a great job, and I appreciate everyone’s effort.
I have a friend who was diagnosed 11 months ago with ALS, and despite by best efforts have not been able to make the case that he should look into the MP. He is much worse in the interim. Instead he spent a lot of money on stem cell therapy which did nothing. Part of the problem may be that he is now simply be too sick to do much of anything for himself, and part of the problem is that I have not been able to find enough positive ALS/MP information to pique his interest. Since ALS infections seem to move faster that most other Th1 diseases, I was just “thinking out loud” - wondering if hypertonic solutions might slow down the ALS freight train while the MP did its magic.
I’ve ordered Dr. Mattman’s newest book, have read about culture methods of CWD bacteria, and found it unusual that the cultures I have read about so far generally required very salty media. That seemed odd because because salt has been used as a preservative for centuries simply because salty, hypertonic media kills most microorganisms with cell membrances, with or without cell walls.
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Tue Nov 6th, 2007 02:52 |
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Thanks for a clear and concise report. There are a few things you can do to make it an even better 'snapshot' of your current situation.
Please list your ongoing non-MP meds in your signature line.
In your next report, just list the palliative non-MP meds you've taken for the week. This gives us a better picture of current symptom severity.
List routine measures to prevent sun exposure (NoIRs, covered up, sunscreen) in your signature line only.
In your next report, just describe your sun exposure (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday) for the week. This provides a clue to the cause of any symptom increase.
Rating your symptoms on a scale of 1-10 (1 meaning barely noticeable and 10 meaning 'call 911') is helpful. Rating them at their highest for the week paints a good picture of how you are doing since symptoms should be tolerable at all times.
I'm happy to learn you've had some reduction in your neurological symptoms. 
It's important for you to find out what your 25-D is to see what impact it might be having on your immunopathology and make sure your vitamin D avoidance has been successful.
Thanks for clarifying your interest in hypertonic solutions. As I understand it, in vitro findings seldom translate to in vivo. Your friend with ALS is understandably skeptical since our ALS cohort have not yet beaten their disease. ALS progresses rapidly so it is essential to begin the MP asap and to progress to phase 3 as quickly as possible. For some folks, it is, sadly, too late to treat their illness with the MP. See When the disease process is far advanced
You are researching and learning about Th1 inflammation. Good for you........
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davbrkr
Member in Phase 3
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Posted: Sat Nov 10th, 2007 08:36 |
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3 mo. –17 days in Phase I
Benicar: 40 mg Q6H ~ Minocycline: 75 mg/48 hrs.
Other Meds: Bedtime only - Alprazaloam(1 mg), Soma(350 mg), Flomax(.4 mg)
Supplements: None
Symptoms Report: “0-10” scale with “0” least severe; "10" most severe.
- Arthralgia/Joint Pain: [Hands, Shoulders, Knees, Hips, Ankles, Neck] (2)
- Back Pain: (8)
- Bowel Problems [Constipation, dirrhea] (3)
- Cardiac/Heart: [Chest Pain, Irregular Heartbeats] (1)
- Cognitive: [Memory, Fuzzy thinking, Confusion] (5)
- Fatigue: (6)
- Fungal Infectdion (3)
- Insomnia (8)
- Myalgia/Muscle Pain: [Shoulders, hips, legs] (3)
- Nausea, vomiting (1)
- Numbness [arms, hands] (3)
- Other Neurological: [Mood swings, Anger, Irritability, Depression] (2)
- Panic: Attacks (2)
- Paresthesia: [Burning, itching , Electircal] (5)
- Pulmonary/Lung [Cough, congestion, shortness of breath, phlegm] (5)
- Sensitivity [Light, sound - visual disturbances] (3)
- Tinnitus (5)
Discussion:
I’ve tried to take your advice, and develop a symptom rating system. I am a little worried about the amount of space it requires since I’m aware that space on the Internet is a problem. I tried to put this in a table format using MS Word, but tables wouldn’t transfer when reviewed as “REPLIES”. Neither would Excel files. For my own edification, I think I’ll experiment with a spreadsheet that can be updated daily, averaged, and graphed over time.
Back pain has been troubling this week again. I’m midway through my third week of crawling, and now using a walker. I’ve suffered back distress hundreds of times over the 52 years, but have never recovered so slowly in response to what seemed like a VERY minor episode. This should have taken no more than 7-10 days. This slow “recovery” has been like no other. Since back pain has been my most disabling, long-term Th1 symptom, I am wondering if my “odd” recovery this time has something to do with IMMUNOPATHOLOGY induce by the MP? Hope so! Otherwise I’m looking at a 5th back operation. To keep this episode in perspective, I’ve spent up to three years at a time totally bedridden with back problems.
Since I haven’t been outdoors at all in the past week except after sunset to swim, there has been minimal paresthesia. Because direct sunlight exposure to uncovered skin produces an almost immediate sunburn-like sensation, I suspect that much of my itching, burning is related to sunlight exposure. I developed an itchy rash on my back shortly after the back injury, related I suspect, to lying in bed or on a reclinder on my back too much. Carbohydrates also stimulate itching, so I need to be more vigilant about carbs. The more I know about the MP the more optimistic I become.
Thanks, everyone, for your help and hard work.
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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VEZ R.N.
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Posted: Sat Nov 10th, 2007 13:03 |
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Hello Dave, thank you for the thorough update.
Back pain is tough to get through for sure and it sounds like you have more than your share of it. Your past surgery sites will be areas where immunopathology will be at the forefront. A good link for you to read is Back pain link in PAIN CONTROL thread: see Dr Greg Blaney MD wrote, regarding herniated disc.
Could you clarify on your next post your daily sun exposure? You indicated you have not been outdoors in the daylight hours than contribute the increased itching on your back to sun exposure? Thanks
Just as an added note re; your question on CWD's and salt. IMO if these organisms can live in the part of the WBC,s where specific acidic/corosive compounds are maintained in order to destroy invading microorganisms, then they must also have mechanisms to adapt to other normally corrosive environments like sodium chloride.
Continue maintaining good nutrition, hydration, sun avoidance, rest and good range of motion by VEZ
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Toni D
Moderator
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Posted: Sat Nov 10th, 2007 13:18 |
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Hi Dave,
I've just reviewed your thread from the beginning and want to encourage you to hang in there. Seems you're making recognizable progress, even with the recent back challenges.
I do have one concern though and that is the amount of your daylight/sunlight exposure. I read where your office is completely darkened, but then read where all other windows have shades, except for the kitchen. The mere fact that there are unprotected areas in your immediate environment may lead to some of your IPRs. I heard it said on the site [paraphrased] that if a plant can thrive and grow in your home there is too much natural light. Please check that area as a possible offender.
You can always purchase a Lux Meter to ascertain how much artificial lighting is present. Artificial lighting is acceptable at 30 lux over natural lighting.
Attached below is a link for you to review. I realize you've probably read it already, but it's just a friendly reminder. There's info about lux meters in the link also. Okay?
Feel good.
http://www.marshallprotocol.com/view_topic.php?id=7756&forum_id=2&highlight=lux+meters
Last edited on Sat Nov 10th, 2007 13:20 by Toni D
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 25D=26, 1,25D=38| 07/07 25D=<4| BeniQ6H 09/27/05| ModPh2 07/06; Ph2 09/07|Ph3 04/08| 12/08 25D=<4| 05/09 25D=<4, 1,25D=27
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davbrkr
Member in Phase 3
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Posted: Sun Nov 18th, 2007 03:20 |
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3 mo. –25 days in Phase I
Benicar: 40 mg Q6H ~ Minocycline: 75 mg/48 hrs.
Other Meds: Alprazaloam(1 mg bedtime), Soma(350 mg bedtime), Flomax(0.4mg bedtime)
Supplements: None
Last Report: 7 days ago.
Symptoms Report: Scale: “0-10” with “0” least severe; "10" most severe. Score is HIGHEST “IP” for reporting period.
- Arthralgia/Joint Pain: [Hands, Shoulders, Knees, Hips, Ankles, Neck] (2)
- Back Pain: (7`)
- Bowel Problems [Constipation, diarrhea] (3)
- Cardiac/Heart: [Chest Pain, Irregular Heartbeats] (3)
- Cognitive: [Memory, Fuzzy thinking, Confusion] (5)
- Fatigue: (5)
- Fungal Infectdion (4)
- Insomnia (7)
- Myalgia/Muscle Pain: [Shoulders, hips, legs] (3)
- Nausea, vomiting (1)
- Numbness [arms, hands] (3)
- Other Neurological: [Mood swings, Anger, Irritability, Depression] (3)
- Panic: Attacks (4)
- Paresthesia: [Burning, itching , Electrical] (5)
- Pulmonary/Lung [Cough, congestion, shortness of breath, phlegm] (3)
- Sensitivity [Light, sound - visual disturbances] (5)
- Tinnitus (5)
- Other: Seizures (7)
Discussion:
7-8 years ago, I experienced a medical crisis initially diagnosed clinically by 4 different doctors as a Pheochromocytoma based: (1) stomach pain = kidney stone attack, (2) incapacitating headache, (3) and BP=290/150. Radiological examines of adrenals and spine, however, were negative. My family doctor, an internist, concluded that, for unknown reasons, my adrenals were releasing huge amounts of adrenaline inducing extremely high BP, and seizure-like episodes. Describing the original crises further: On three consecutive days I experience similar “attacks” in (1) the hospital emergency room, (2) the doctor’s office the following day, (3) at home the next day. In each case the intense, immobilizing pain lasted approximately 1 hour. Having been diagnosed with Polymyalgia rheumatica, I had been on Prednisone at the time of at least a year.
Nov 12: Between then and now, I’ve had a couple of isolated, very minor episodes like this, until Monday Nov 12 when I had another severe attack starting around 3:00 PM, and lasting for approx. 1 hour. As soon as the pain subsided, and I could sit up, I tried to check my blood pressure twice, approx. 10 minutes apart, and couldn’t get a reading. My BP cuff only measures systolic pressure up to 240. 30 minutes later my BP was 158/95, awfully high for someone on a quadruple daily dose of Benicar. Recently it ‘s typically been: 100/65 +/- 10%.
Nov 13: The next morning I had 2 similar, minor episodes at 2:00 AM and 10:30 AM, each lasting not more than 20 minutes. Reaching maximum intensity in 2-3 minutes, for the most part, these seizure-like episodes come on with no warning. Nothing seems to moderate them. That same evening at 11:30 PM, I had a fourth minor episode, the third of the day, lasting approximately 15 minutes seemingly triggered by getting up to use the bathroom, and get a drink.
No 14: I had a doctor’s appointment. Travel time each way is 30 minutes, so I had an hour’s sun exposure outdoors - mostly in the car (Long sleeves, pants, hat, 2% NoIR’s). Since “injuring” my back (I don’t believe it’s as simple as an injury) that’s the first I’ve been outdoors during daylight hours in more than two weeks. Sun exposure this time seemed to trigger a higher level of RSD type “burning” on the skin than anything I’ve experienced for several weeks. About 6 hrs after returning home, a dull headache developed lasting until I finally fell asleep at approx 1:30 AM. I’ve felt worse than usual since the Dr.’s appointment - RSD symptoms, panic attacks - sunlight exposure perhaps?
Today: Nov 17, I had a minor “tweak” to my back “while standing up” even though I was using a walker for support (30 days now using a walker). My back is as fragile as it has been in at least 4 years. I can never remember recovering this slowly from a trauma event this minor. I’m beginning to suspect, that because of the long duration of my illness, getting well is going to be harder than I could have imagined. By the same token, I have made progress already. I can still get my wedding ring off and back on - 22 days now - so my joints are better.
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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VEZ R.N.
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Posted: Sun Nov 18th, 2007 06:16 |
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Thank you for the update Dave.
Sorry to hear you are experiencing increased immunopathology symptoms. Be sure to monitor your symptoms closely as well as your BP. It is not surprising your immune response is centered around those areas affected most by the Th1 inflammatory disease. It does sound like you are making strides to handle your symptoms well. You did not mention whether you tried extra Benicar for the hypertensive episodes, many times if Dr. agrees, 20mg of Benicar in between your dosing schedule or benicar q 4hrs for increase immunopathology can help. Benicar is not considered the first drug of choice for severe hypertension, usually doesn't lower BP more than 12mm of mercury or so regardless of the dosage.
BP fluctuation is very common with those who have Th1 inflammatory disease, however if you continue to have episodes of severe hypertension you may need further medication to normalize. Could you describe your "seizure like" symptoms for clarity? Thank you.
Hang in there, VEZ
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davbrkr
Member in Phase 3
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Posted: Mon Nov 19th, 2007 00:01 |
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SEIZURE-LIKE DESCRIPTION per request: The seizure-like episodes, according to my physician(s) at the time mimic the symptoms of a Pheochromocytoma adrenal tumor incident, but examinations for that tumor were negative! Taking no more than 2-3 minutes to reach maximum intensity, they come without warning, and can occur at any time of the day or night. In other words, if there is a triggering even, I don’t know what it is. The symptom sequence is:
- A feeling of nausea quickly followed by
- Abdominal pain that puts me in the fetal position (cannot sit or stand), and,
- Within 60-90 seconds, a crushing, completely disabling headache.
I have taken an extra 20 mg of Benicar with each seizure-like episode. I don’t know whether or not it helps. Completely immobilized at the time, I cannot take a BP reading or do anything else (BP=290/150 recorded by emergency room doctor the first time). However, within 30-45 minutes after all symptoms have subsided, BP is still very high. Most attacks last 15-60 minutes. I can only guess that BP is already rising before any other symptoms are present. The whole thing comes on so quickly; there is no way to take BP readings at the onset. Stoke is a major concern, but no one knows what to do about it. So far episodes occur 3-4 times over roughly 36 hours. Then years pass between episodes. Headaches were NOT as bad this time as previously. I’m hoping this is the last hurrah for this symptom. I do know one other very, very sick person in Louisiana who’s had something similar happen without a Pheo-diagnosis. I’m guessing this is just one more bizarre, rarely reported symptom of Th1 disease.
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Tue Nov 20th, 2007 08:12 |
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Thanks for the clarification. Those episodes sound very dramatic. Is natural light exposure a factor in symptom exacerbation?
It's fine take 40mg of Benicar as soon as you feel an 'aura'. See Evidence that taking Benicar at MP recommended doses is safe
Hang in there.........
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davbrkr
Member in Phase 3
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Posted: Wed Nov 21st, 2007 00:12 |
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My wife was diagnosed with Lyme disease (positive IgeneX Western Blot titer) the same time I was. She had back and joint pain, Bells Palsy, etc. For 6 months, we were both on a combination of oral Doxyclycline and Flagl, alternating every 10 days, PLUS an herbal protocol (Samento, Cumanda, Quina, Carnivora, etc). She was symptom free at the end of the protocol. I was better, but still pretty sick. I DO NOT THINK SHE IS WELL despite the fact that our LLD has declared her “cured”. There are still some minor, but suspicious things slowly reemerging after 4 months. I’ve been reading about almost nothing else but Lyme/Th1 disease for the past year and a half, and am beginning to doubt that anyone gets truly well on any protocol that ignores CWD bacteria. Our local LLD (doc) who also has Lyme disease, and is treating 300 patients with that diagnosis, has been on IV Rocephin, IV H202, IV vitamin C, IV colloidal silver, HgH therapy, and a multitude of supplements, and is still not well after nearly 5 years (brain fog, RSD burning, back pain, etc). So far, I am his only MP patient. He is a man of the highest integrity, and if I do well, there will be many others, I’m sure.
My wife has agreed to do a MP therapeutic probe for al least a month looking for immunopathology, and any change in sunlight sensitivity. Since she has been on Benicar with hydrochlorothiazide for years for slightly elevated blood pressure (covered by insurance), can she use her current Benicar prescription with hydrochlorothiazide for ONE of her daily Benicar doses, and Benicar only for the remainder?
A physician friend, Dr E., on the MP himself, called me a couple of weeks ago from this year’s ILADS annual conference in Boston midway through the seminar. Although most attending physician-participants acknowledge that Lyme has a CWD/L-form, discussion about CWD bacteria was almost entirely absent, at least midway through the weekend. One speaker, without being too specific, talked about the possibility that Lyme may have another intracellular form, but no remedy was proposed. It sounds like ILADS docs diagnose all Th1 disease as Lyme disease. Their protocols address spirochetes and cysts only. With all the persecution suffered by LLD’s across the country, I should think ILAD’s doctors would be enthusiastic MP allies, but Dr. E’s report makes me wonder. Are ILADS doctors just wearing a smaller set of blinders than the rest of the medical community?
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Thu Nov 22nd, 2007 04:20 |
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Are ILADS doctors just wearing a smaller set of blinders than the rest of the medical community?
That seems to be an accurate assessment.........
If your wife wants to use up her supply of Benicar HCT and she is sure her kidneys are in good shape, it's probably okay for her to take one Benicar HCT a day. She should make sure it's okay with Doc and monitor her B/P. Please ask her to join the site, take ownership of her treatment and post progress reports. We'd be happy to assist her.....
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davbrkr
Member in Phase 3
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Posted: Sun Nov 25th, 2007 01:41 |
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[15 days] · Ben Only] || [4 mo, 2 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days
Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg)
Symptoms Report: Scale: “0-10” with “0” least severe; "10" most severe. Score is HIGHEST “IP” for reporting period “Capital letters - most troubling in group. Each evaluation starts with a blank template to minimize the influence of previous scoring.
- 4 | Arthralgia/Joint Pain: [HANDS, Shoulders, Knees, Hips, Ankles, Neck]
- 7 | BACK PAIN
- 2 | Bowel Problems [CONSTIPATION, diarrhea]
- 2 | Cardiac/Heart: [CHEST PAIN, Irregular Heartbeats]
- 3 | Cognitive: [MEMORY, Fuzzy thinking, Confusion]
- 3 | FATIGUE
- 3 | FUNGAL INFECTION
- 3 | INSOMNIA
- 5 | Myalgia/Muscle Pain: [SHOULDERS, hips, legs]
- 1 | Nausea, VOMITTING
- 2 | Neurological (0ther): [Mood swings, ANGER, Irritability, Depression]
- 3 | Numbness [Arms, HANDS]
- 3 | PANIC ATTACKS
- 3 | Paresthesia: [BURNING, ITCHING, Electrical]
- 4 | Pulmonary/Lung [COUGH, congestion, shortness of breath, PHLEGM]
- 4 | Sensitivity [LIGHT, sound, floaters, blurred vision]
- 4 | TINNITUS)
- 0 | Other: SEIZURES
Discussion:
On a regular monthly basis, I see my doctor, who although he is willing to help, has not yet fully engaged the MP. Each month I provide him with a 1 page written MP progress report. He not only asks questions, but takes notes as needed. Because of my recent “back problems” and “seizure-like” episodes, he kept me in the exam room for nearly two hours on my last appointment, and gave me a thorough going over.
IMO, his willingness to help me with the MP is motivated by the following.
- He is a caring, competent LLD physician who genuinely wants all of his 300 “Lyme” patients to get well.
- His treatment of choice is IV Rocephin, IV colloidal silver, IV H2O2, plus supplements and herbs - a protocol affordable only by a limited number of patients.
- He considers me one of his more difficult cases, and having tried everything I can afford, was open to any reasonable idea.
- He, himself, has “Lyme”/Th1 disease, and after years of treatment, is still not well. I suspect he is still looking for an answer personally.
Because my doctor’s is extremely busy, and knew almost nothing about the MP, I did not press him for D-metabolite tests initially, so my journey started as a therapeutic probe. I was satisfied to have a willing listener, and someone who would write my scripts, and be there if I had special problems. I’ve requested my first 25, D test as part of my next monthly appointment.
There have been no more seizures this week - hurrah!
About 8 years ago, after seeing an internist, two rheumatologists, a cardiologist, and a GI doc, I was given 3 months to live. After having all applicable tests, no one could find any reason for my life threatening arrhythmias. Because I had figured out on my own, as usual, by pouring through the medical literature that my symptoms matched those suffering from either (1) mercury toxicity or (1) Lyme disease, I raised these two possibilities with each of the physicians. My “audacity” was met with derision at worst - silence at best. Nevertheless, all including my dentist assured me that mercury amalgams were completely safe, and the docs told me Lyme was rare, and easily treated with oral antibiotics. None prescribed an antibiotic. Since it was obvious that no one was going to do anything, and because I was the one dying in 90 days, I did the only thing I knew how to do. Over the general objections of my “medical experts”, I had my amalgams removed.
By the time all mercury fillings had been replaced with composites -about 2 months, Pre-Ventricular Contractions (PVC’s) had dropped from an average of 30 per minute to 3-5 per minute, and although I was no longer in imminent danger of having a fatal heart attack, even after mercury chelation, I was still only about 40-50% better. Mercury, of course, is neurotoxic, and so is Lyme/Th1 disease. Since I had BOTH, there was no way I could separate one from the other. Although follow-up mercury testing eventually showed I was relatively heavy metal free, between then and now, my Th1 disease has completely dismantled my health again without any help from neurotoxic metals. The point of this is that I now find myself in a similar dilemma with respect to what is going on with my back pain.
My back condition is unchanged from last week. No progress - still using a walker “very, very carefully”. I can stand unaided unless I straighten up completely. It’s the last 3-5% that’s the problem. Over the past 30+ years, I’ve had back procedures/surgeries for Superior Articulating Facet Syndrome (SAF), Spinal Stenosis, and multiple herniated discs. Only 1 of 4 operations helped much - the one for spinal stenosis. The other 3 + 6 more joint operations were a total waste of time and money. Even if my initial back pain was simply the result of Th1 infection, 4 operations later, after cutting, sawing, chiseling, fusing, etc. my back is surgically compromised if nothing else. So is my current back status the result of (1) structural problems or (2) my infection. or (3) both as the earlier mercury and/or Th1 dilemma? It would be very easy at this time to find a doctor who would operate again. On the other hand, if I just “hang in there” with the walker, and bed rest as needed, can I avoid another surgery? Please understand, I’m not looking for an answer to this question, but maybe someone else ahead of me in the Th1 healing process has gone through something like this who could offer some insight.
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Sun Nov 25th, 2007 07:46 |
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I don't recall anyone on the MP with anywhere near your extensive history of back pain and multiple back surgeries. You are pioneering the MP for this particular situation. Since you were given a death sentence 8 yrs ago and have seem limited improvements in that time, it is reasonable to assume that your Th1 inflammation is quite advanced.
The MP has an excellent safety record but it is still an experimental treatment plan. Many folks who are very symptomatic or who have been ill for a long time are doing well on the MP. But you should know that if symptoms are extremely debilitating or vital organs are severely compromised, it may be very difficult or even impossible to tolerate the immunopathology involved in the healing process. Patients should be aware there is a rare possibility that immunopathology will provoke a serious adverse event, especially if the disease process is well advanced.
I wish I had better news but you may have to wait a very long time before you see any improvement in your back pain. That's a lot to ask when we cannot offer a role model for you as proof of efficacy. I can understand if you would be tempted to have another surgery even though surgery has not been the answer before. You may have to adjust your expectations if you want to persist with the MP.
I don't see that you are taking a lot of pain meds and this may be the only way to tolerate what seems to be significant immunopathology. I hope you can manage to hang in there.....
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davbrkr
Member in Phase 3
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Posted: Wed Nov 28th, 2007 02:07 |
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Thank you for your detailed and thoughtful reply (11/24/07). I feel guilty taking up this much staff time, SO YOU NEED NOT REPLY TO THIS COMMUNIQUE.
Prior to starting the MP, I did 4 other protocols for Lyme disease including oral antibiotics, and did feel 40-50% better. Although I knew I was not well, for the first time in 30 years I was able to walk on a semi-regular basis for as much as an hour. Because there were many times when I was bedridden for months and/or years at a time, this represented a HUGE improvement. Then 12 day’s exposure to the Hawaiian sun completely, “unraveled” 14 months of herbal protocols, and I was essentially back to ground zero. However, within a few weeks I had recaptured some of my gains, and was back to limited walking on an “as able” basis.
In the past 15 years, I’ve read hundreds of books, and studied more than 30 other Lyme/Th1 protocols trying to figure out why I was so sick. Nothing else makes even remotely as much sense as the MP, so I’m going to do this if it kills me! Irrespective of how much money is spent, I no longer believe anyone cures a Th1 disease with antibiotics and/or supplement protocols.
The re-emergence of back pain recently is coincident with the MP and its corresponding IP. On earlier herbal protocols I had minimal IP, and minimal back trouble. Since starting the MP, it is not unusual to go to bed with a back pain level of “2” and wake up, or be awakened by pain at “4-5”. Since the increase occurred while sleeping, there was no rational way to attribute the pain increase to trauma. I suspect IP, and although I hate not being able to walk unaided, IP is good, SO I AM NOT DISCOURAGED! The other possibility is that I actually need another fusion. Only time will tell. Strangely, this “back recovery”, or lack of it, is somehow “different” than any other adding to the argument for immunopathology. As a college athlete and aspiring Olympian, I trained each day by the axiom:
“Pain is every champion’s ally. Embrace it”! I welcome immunopathology in the same spirit.
I’ve also noticed a definite change in sleeping patterns. Instead of falling asleep belatedly without any sleep medication, awakening within 2-4 hours, and lying awake until sun rise as I have for decades, since starting the MP I’ve haven’t been able to go to sleep at all - not even once -without sleep aids! The “fall asleep switch” has stopped working. Though exhausted, I can’t even nap during the day. I suspect the sleep pattern anomaly is just more IP.
A week or more ago, when I was having incredibly painful seizures, I’d already made up my mind that if I had to have them every day for the next 2-3 years, I’d find some way to get through it. Stuff happens, and although my back pain is worse, I have no doubt that I’m feeling better overall after only 4½ months on the MP. Of my three worst symptoms - panic attacks, RSD burning, and back pain, the first two are already minor issues compared to where I was when I started. While they dominated by fears just a few months ago, I rarely even think about them now, so I’m winning!
Having long ago lost all confidence in the medical profession, like many other Th1 disease sufferers, I’ve spent years trying to find anything that would help. Because family and friends know I’m trying something new, the MP, and because I can’t hide a walker, my current disabling back pain is visual confirmation to all of just one more in a long series of failures. Although no one says anything, by now I know the “looks”, and sense the “unspoken” cynicism. I’m saying nothing, because I know something they don’t. I’ve started graphing my weekly symptom scores in an Excel spreadsheet, and despite setbacks, the overall slope is going DOWN!
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Foundation Staff
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Posted: Wed Nov 28th, 2007 05:32 |
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Thanks for explaining. You surely have the right attitude.... You might enjoy reading what Dr. Blaney has to say on the subject. See How to lessen incapacity caused by immunopathology.
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davbrkr
Member in Phase 3
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Posted: Tue Dec 4th, 2007 02:53 |
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[15 days] · Ben Only] || [4 mo, 11 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days
Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg)
Worst Symptoms: Scores >=3 only to save space.
- 3| Arthralgia/Joint Pain: [HANDS, Shoulders, Knees, Hips, Ankles, Neck]
- 6| BACK PAIN
- 4| FATIGUE
- 3| FUNGAL INFECTION
- 3| INSOMNIA
- 3| Myalgia/Muscle Pain: [SHOULDERS, hips, legs]
- 3| Neurological (0ther): [Mood swings, ANGER, Irritability, Depression]
- 3| Numbness [Arms, HANDS]
- 4| Pulmonary/Lung [COUGH, congestion, shortness of breath, PHLEGM]
- 5| Sensitivity [LIGHT, sound, floaters, blurred vision]
- 3| TINNITUS)
Discussion:
Although I’m still unable to get around without a walker, there have been no more seizures since my last post. In an effort to forestall another spinal fusion, for the past 3 years my back-doctor of the past 27 years (He’s also a Th1’er registered on the Doc-forum) has been doing a rhizotomy by injection every 6-9 months. The “RHIZO” kills the nerves. They then take about 6-9 months to regenerate. My back blew-up 9 months since the last treatment. I’m scheduled to have in redone in about 10 days if I can make it on the plane.
Because Dr. E is Th1-literate, he also is reasonably sure that some indeterminate part of my back pain is IP, and WHEN I can eventually get past this disease, I may still get some mileage out of a painful back. Since my last post, nothing notable - some symptoms up, some down. Overall a better 9 days than the previous week. I continue to record my symptom progression using an Excel graph.
I will work on a photograph. A friend gave us a small digital camera. Neither of us has ever used it, but I’ll see what I can do.
I live in a retirement community of about 15,000 in 5 contiguous, affiliated communities (same developer). Since I’m walker-bound for a while at least, and I almost never leave my home to go anywhere during the daytime, my contacts are, for now at least, limited to the very small number of others who use the swimming pools and/or spas after dark. However, because most of us are 55-95, it seems like just about everyone I talk to has symptoms of Th1 disease, or know someone who does. Most have already been diagnosed with one the Th1 disease labels, and as is universally the case, are getting no help from even the most prestigious medical facilities. I’ve prepared a business-sized card, printed on both sides, with basic information about CWDB infection, their links to chronic disease, and the answer - The Marshall Protocol. I’ve also written up a more detailed 5-page description of my 40-50 year “journey”, basic information about autoimmune disease and infection, and sent it to nearly everyone on my E-mail address list including high school and college classmates. Encouraging anyone with a chronic health problem to go to the MP website, some have thanked me profusely. Others have passed the information along to family and friends. Although it will take some time, with free meeting facilities available in all 5 communities, as my progress and health allow, I' would like to make arrangements to talk to larger groups who need help.
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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VEZ R.N.
Health Professional
| Joined: | Fri May 19th, 2006 |
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Posted: Tue Dec 4th, 2007 14:52 |
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Thank you for the update Dave.
Sounds like you are managing well in spite of the back issues. What a good way to communicate to others who have Th1 inflammatory diseases! It seems you are in a good place to have lots of support as well as the help you need.
Hang in there and take good care of yourself.
Best Regards, VEZ
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davbrkr
Member in Phase 3
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Posted: Tue Dec 11th, 2007 00:48 |
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[15 days] · Ben Only] || [4 mo,26 days] · PhzI· Ben: 40 mg Q6H~Mino: 75 mg/2 days
Other Meds: Bedtime only: Alprazaloam (1 mg) · Soma (350 mg) · Flomax (0.4mg)
Worst Symptoms: Scores >=3 only to save space.
- 3 | Arthralgia/Joint Pain: [HANDS, Shoulders, Knees, Hips, Ankles, Neck]
- 5 | BACK PAIN
- 3 | Bowel Problems [CONSTIPATION, diarrhea]
- 3 | FATIGUE
- 5 | FUNGAL INFECTION
- 3 | INSOMNIA
- 3 | Numbness [Arms, HANDS]
- 3 | PANIC ATTACKS
- 3 | Paresthesia: [BURNING, ITCHING, Electrical]
- 4 | Sensitivity [LIGHT, sound, floaters, blurred vision]
- 3 | TINNITUS)
Discussion:
Does it make sense to report only symptoms that I assign values “>=4”, or is the “>=3” criteria OK?
Tomorrow I travel to Oklahoma City to have a rhizotomy on my back. Today is my 50th day using a walker following what I considered a minor back trauma event. It just hasn’t “healed” this time as in the past following episodes of similar severity. IP is suspect. Because I experienced a fungal infection “flare”, I’ve temporarily used TriMethylGlycline (TMG) / (Betaine HCl) as a methyl donor, and as in the past it:
1. Seemed to help with the fungal problem within 24 hours, and about the same time,
2. My IP level increased. The same thing happened last time I used TMG.
It may be nothing more than coincidence. TMG is something I will discontinue as soon as fungal symptoms are manageable. I tend to think of increased IP as resulting from doing something I shouldn’t like - too much light exposure, or the natural result of the immune system working better.
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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