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Frenchie
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Posted: Wed Feb 3rd, 2010 23:36 |
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Just started the MP, and I have a medical history which the MP staff may want to keep a particularly close eye on.
Symptoms: Psoriasis, first onset eleven years ago. Arthritis, first onset nearly ten years ago, diagnosed as Reiters Syndrome. Chronic fatigue, first onset about nine years ago. Various other chronic symptoms that have appeared over the years since with no diagnosis, often following an infection in the same system, such as in 2006 a left ear infection that cleared with antibiotics, but ever since I have had persistent itching and exfoliation in both ears.
What makes my case one to watch is that it is a classic case of Gulf War Illness (GWI); my first symptom started just under three weeks after my third shot of Anthrax Vaccine Adsorbed (AVA), the next symptoms started just over three weeks after my sixth shot, which was eighteen months after the third shot. There are currently over a thousand cases of arthritis / arthralgia / painful / swollen joints listed in VAERS as following AVA, and over a thousand more of skin rashes, many of them systemic, plus nearly a thousand of fatigue.
The reference on this site to L form bacillus anthracis transferring DNA that allows a pathogen to evade the immune system sounds fascinating, although I do not understand any of the biochemistry behind it. It would seem to an amateur such as myself to provide a mechanism that could lead to the kinds of multi symptom illnesses that veterans have a history of; the DoD did a study that showed mycoplasma could not survive in the vaccine, but they have never tested the same for L form.
In 2001 Congress established Vaccine Healthcare Centers (VHC) to investigate such illnesses, they have had a politically troubled history, but if the MP can be shown to be of benefit for GWI, approaching the right Congressmen could potentially open up a new line of research funding with very deep pockets. It would have to be handled very judiciously, but I get the strong impression the MP staff are already well aware of the nature of the subject.
This is day five of olmesartan, 40mg every six hours, and I am experiencing a major flare up of symptoms, the worst they have been in a very long time, which I guess is a good sign; no photosensitivity yet, but the old symptoms are back in force.
Tests in Oct. 2009:
25 Vitamin D 31ng/ml
1,25 Vitamin D 672 ng/ml.
December 2009:
25 Vitamin D 26 ng/ml.
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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 26 ng/ml Dec09
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Chris
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Posted: Sat Feb 6th, 2010 17:11 |
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Yes, it's a good sign, though an uncomfortable one, that the MP will work for you.
Things get worse, especially sun sensitivity, when the 25D drops down closer to 12. So do be cautious.
Have you gotten your NOIRs and darkened your home? One thing benicar does is to down regulate 1,25D and the hormonal shifts due to that are uncomfortable. If you've been sun-sensitive all along (but hadn't differentiated that from other trouble), some of your symptoms can be from the bounce between the effects of benicar and of sun. It's good to go real dark and see if that helps moderate things.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Frenchie
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Posted: Sun Mar 14th, 2010 17:00 |
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Several weeks now on Olmesartan 40mg 4X / day. One side effect that I have not read about here, but have experienced, is being prone to dehydration. Often when I drink water it just runs right through me, and I often start to black out even when just doing mild activity in temperatures in the 30s. in coastal humidity It is usually possible to tolerate by slowly sipping a cup of water every hour or so, and avoiding doing anything strenuous, but the day of my last medical appointment, when I had to travel, after about 3-4 hours without water, I found myself sitting on a train with greyed out vision and a spinning head, much like that of climbing at over twenty thousand feet, and I could not possibly have stood up without passing out. Luckily I did not need to move for two hours, and after very slowly drinking 50 oz. of water got back to normal. I have experienced that kind of dehydration before in deserts and rainforests, but this was just travel by train on a cold winter's day.
Other than that, I have experienced cold fingers and toes, but nothing beyond the power of warm clothing and a hot water bottle to deal with. Some photosensitivity, but only really in bright sunlight. And the long term illness symptoms are cooking off badly, but I am guessing that is still a good sign.
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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 26 ng/ml Dec09
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Elliott-Noelle
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Posted: Sun Mar 14th, 2010 21:34 |
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Hi
I am currently taking Benicar 40mg q6 and have noticed the same thing with being prone to dehydration. I am drinking enormous amounts of water compared to what I used to consume. I have not seen anyone mention this either on the MP.
Elliott-Noelle
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Severe CFS 30 yrs, Severe Nocturnal Myoclonus, Candida, MCS, Osteopenia, Joint Pain/Swelling in Fingers, Depression, Allergies. Work 4hrs 2x/wk as a Reg Nurse. 7/09 D1,25-36, D25-39, 10/09 D25-26, 11/09 D25-18, 2/10 D25-13, 7/10 D25-18
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Joyful
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Posted: Mon Mar 15th, 2010 10:11 |
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Just about everyone with CFS has dealt with these types of problems as part of their disease. Many people starting the MP experience the dizziness as you described.
I went to the MP knowledge base and searched on "dehydration" as the key word. Seems like this section would be helpful for you: http://mpkb.org/doku.php/home:symptoms:hormonal:blood_pressure#symptom_management
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Elliott-Noelle
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Posted: Mon Mar 15th, 2010 16:18 |
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Hi
I guess I didn't make myself clear. I was saying since I started taking the Benicar, my fluid intake has increased to the extent that I need a lot more water to stay hydrated than I did before starting the drug. Was wondering why that is?
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Severe CFS 30 yrs, Severe Nocturnal Myoclonus, Candida, MCS, Osteopenia, Joint Pain/Swelling in Fingers, Depression, Allergies. Work 4hrs 2x/wk as a Reg Nurse. 7/09 D1,25-36, D25-39, 10/09 D25-26, 11/09 D25-18, 2/10 D25-13, 7/10 D25-18
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Joyful
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Posted: Tue Mar 16th, 2010 05:37 |
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Sorry, I can't explain the mechanisms. But I can confirm this is common within this group of people addressing Th1 disease with the MP.
( And I can offer links to articles on symptom management until it resolves.  )
Healthy people don't have this symptom when they take the Benicar, so a reasonable assumption would be that the symptom is IP related.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Knochen
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Posted: Tue Mar 16th, 2010 15:34 |
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Hi Frenchie -
I doubt this is the problem, but you should double check to be sure you are taking plain Olmesartan, not the kind with the added diuretic. Here in the US, there is a "Benicar HCT" version that has diruetic added to it, and that is to be avoided because of the fluid losses it would cause.
The dizziness and fatigue are also common forms of immunopathology, so they may be with you for some time. Just be ready to go slow and be careful standing. I had many many months where getting up from a squatting position (like when looking at a floor level bookshelf) and then standing would cause me to white out badly. The trick is to anticipate it and have something to grab and not move until things clear in a few seconds. The only time I ever actually blacked out was getting up from the couch quickly while laughing hard at something on TV. I think the extra valsalva action sent me over the edge. I had some control for the first part of the descent even so. According to witnesses, I just folded to my knees and then toppled forward onto my face. No damage, a very soft landing. After nearly 4 years, my BP is the same as ever, but I don't get this unless my IP is giving me trouble, so it's more IP than BP related. Oddly, the symptoms are very similar to dehydration in many ways! You should of course, keep adequately hydrated, but differentiating symptoms can sometimes be difficult.
It sounds like you are off to a good start so far! Be careful of the light exposure. It can come get you at any time and make the symptoms feel a lot worse. Better to just take a full Light Protective Posture for now and eliminate that variable. There's no sense in feeling worse than you need to. You can experiment with light later after you have been on the MP for a while and find out your real tolerance level. You've got quite a bit of D25 still as well, so you might get a surprise when that drop below the threshold - another variable to keep an eye on for now. Just go slow, the MP is a long hike!
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Frenchie
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Posted: Thu Apr 8th, 2010 11:48 |
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Some test results from 31st March:
GFR calculated abbreviated MDRD: 41 mL/min
Serum Creatine: 168 micromol/L
Serum K: 5.3 mmol/L
Serum Na: 136 mmol/L
I will hopefully have an updated Vitamin D result in a week or two.
The only guide I can find to kidney tests is under 'outdated FAQs', here:
http://www.marshallprotocol.com/forum32/2487.html
My results are fairly far out of the normal range, would increasing olmesartan to 40 mg every four hours be a good idea?
The rest of my symptoms have subsided quite a bit, no more nausea, I can walk reasonable distances on the flat at least, energy levels let me work 3 - 4 hours a day, and I am only sensitive to bright sunlight.
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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 26 ng/ml Dec09
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Chris
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Posted: Fri Apr 9th, 2010 14:57 |
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Here are a few of the newer pages on kidney troubles.
http://mpkb.org/doku.php/home:diseases:kidney_disease
http://mpkb.org/doku.php/home:protocol:olmesartan:kidney_disease
http://mpkb.org/doku.php/home:tests:creatinine
By the way, did you double check on the 'Benicar HCT' question? And are you on benicar only right now?
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Frenchie
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Posted: Sun Apr 11th, 2010 10:24 |
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Thanks Chris, I read the links before they came back with the error message they have now. They did not give any real information on the extent to which I should try to limit immunopathology - while the tests may not be absolute in terms of kidney function, they seem to be all there is to go off, and it would be nice to have some more specific guidance on how to respond to them. In terms of symptoms, I am feeling a lot better and nearly ready to move on with the MP when the vitamin D levels allow, but perhaps I should delay a while to give my kidneys a break? The other question is whether I should increase the level of olmesartan, which would be easy to do since I have a new order arriving shortly.
I am taking the knock off olmesartan without HCT named Olmecip. I wonder if my inabilaty to process water properly is somehow related to kidney function. That problem, too, started to ease a little a few weeks ago, but has become more difficult now the weather has warmed up this week.
Last edited on Sun Apr 11th, 2010 10:26 by Frenchie
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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 26 ng/ml Dec09
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Chris
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Posted: Mon Apr 12th, 2010 02:05 |
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Maybe it's the Phase One Guideline you should re-read.
Some patients experience immunopathology when commencing Olmesartan alone, because Olmesartan restores proper functioning of the innate immune system, which will begin to kill the pathogenic bacteria. Occasionally these symptoms become intolerable. The first option to reduce intolerable immunopathology is to take Olmesartan every 4 hours until the immunopathology subsides (for months, if necessary). The second option (which may be used concurrently) is to dissolve half of an Olmesartan tablet ( a dose of 20mg) under the tongue. Additional Olmesartan should be kept on hand at all times.
Patients experiencing intolerable immunopathology from Olmesartan alone, whose immunopathology is not controlled by more frequent dosing or sublingual bolus, should allow time for hormonal rebalance, discontinue supplements, abstain from vitamin D, protect their eyes (even indoors), and fully avoid outdoors exposure. An Olmesartan dosing regime of 20mg every 6 hours may be used as a temporary aid to help the patient’s immune and hormonal systems to achieve stability. Palliation with either Quercetin or Guaifenesin should be attempted before deciding to temporarily lower the dose of Olmesartan.
Going to 40mg/4hours is the first thing to try, then yet another 20mg sub-lingually. Then guaifenesin (which will increase your water use) and then lowering the level.
But you do want to get stable on olmesartan before starting mino.
Increased water intake is necessary to flush things out, and I noticed similar problems, but not as severe as yours. The only time I noticed that 'water ran right through me' was when prednisone caused diabetes to flare before the MP. It could be that you have a bit of pancreas trouble to go with everything else, but that's only speculation on my part.
The guideline I used (note, personal policy, not MP official) was to drink enough water and back down on the antibiotics to keep the tests low enough to avoid scaring my doctor into stopping the olmesartan prescription. But I didn't hit the level of trouble you seem to have until I got to the mino.
Hope this helps,
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Frenchie
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Posted: Tue Apr 13th, 2010 09:13 |
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If there is no clear definition of what levels of kidney function constitute intolerable pathology, I will try to err on the side of caution.
It was not my MP doctor who ordered these tests, as I had figured it was worth a go to try to get the government to pay for the olmesartan and vitmamin D tests, so I got an appointment with the most junior doctor available, and explained what I wanted. He tried to help, and it might just have worked had it not been for the kidney results, which were passed to one of the more senior doctors who freaked out to an extent there is no point going back there.
Government medicine is entirely intolerant of independent thought (are you listening Obama?), so I will have to plan on a rather large budget for the MP.
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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 26 ng/ml Dec09
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Cynthia Schnitz
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Posted: Tue Apr 13th, 2010 21:00 |
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| Hi Frenchie. Does your name imply that you are in France? Either way, it is of great value for those of us answering questions, when we can, if we know your rough location. And since your answer to my question will soon be buried by more recent posts, it is best to go to 'My Account', upper right, and click on the profile tab, where you will be able to add your location so that it will always be shown under your name. Thanks, Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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Frenchie
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Posted: Wed Jul 28th, 2010 12:02 |
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In late April, I must have hit a critical threshold for 25D, because that was when everything hit me. For the next two months, I barely got out of my chair, I could not stay outside in daylight for more than a few minutes even with 2% IRs (such is the way of the way of the world, it was the sunniest May and June for many years), and my blood pressure got down to 73/36. When I once took the bus to the post office in the next village I passed out from the exertion. Taking 5 X 40mg Olmesartan hit me harder than 4 X 40mg.
By the end of June it started to ease, although the physical symptoms of the illness are still pretty strong.
The next question is when I should start minocycline. I am planning to take a break for a couple of months to let my body recover a bit, and get a new 25D test as soon as I figure out where I put the kit on one of my zombie days.
Overall it still seems that I am following the pattern of symptoms that the MP is supposed to bring on, which is good news.
Last edited on Wed Jul 28th, 2010 12:09 by Frenchie
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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 26 ng/ml Dec09
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Sallie Q
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Posted: Wed Aug 4th, 2010 00:36 |
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Frenchie wrote: In late April, I must have hit a critical threshold for 25D, because that was when everything hit me. ..... Taking 5 X 40mg Olmesartan hit me harder than 4 X 40mg.
....... the physical symptoms of the illness are still pretty strong.
The next question is when I should start minocycline. I am planning to take a break for a couple of months to let my body recover a bit,
..........which is good news.
Hi Frenchie
Good news indeed, but be aware
Joyful has said “If you set your mind to understanding that adding any change (life stress, light/heat exposure stress, food reactions, changes in activity levels, changes in diet, changes in medications) can cause instability, then you will be well prepared to find a way to make the MP lifestyle support your educational goals.”
does this sound like your recent light/heat stress?
and remember
“When you are dealing with chronic illness, getting dehydrated can be a major set back. You will do well to carefully track your fluid intake and avoid this mistake.”
Please do not discontinue 6 hourly Benicar and expect less symptoms, you are likely to get more.
A really important function of 6 hourly Benicar is to protect all your organs from damage.
Once started on MP, Olmesartan is continued right through until state 5 is reached [you will not need to consider that for some years ;-) ]
Keep on the the Benicar , your level of IP suggests to me -- do not be impatient to start Mino yet if only "to let body recover" from sun exposure and metabolic adjustments during May
“Joyful has said also"The most important thing is to realize that you will benefit immensely from the foundation of the protocol, the olmesartan. Some have even reached recovery with Benicar alone.”
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Sjogrens; b.cancer; postviral fatigue: D25 7ng/ml@Jly10
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Frenchie
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Posted: Thu Aug 5th, 2010 08:38 |
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By 'take a break' I just meant from the relentless destruction of pathogens, I am still taking 4 x 40mg olmesartan, but I need a breather before going on. One of the symptoms has been nausea to an extent I have been restricted on what I could eat, and I want to get some nutrition for a while.
It was more of an annoying nuisance than anything having the sunniest spring since records began in 1929, as my 18th century cottage is quite dark inside, I was just unable to go outside for 18 hours per day.
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Gulf War Syndrome, 1,25D 62 pg/ml Oct09, Ph1Jan10, 25D 26 ng/ml Dec09
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Sallie Q
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Posted: Fri Aug 6th, 2010 02:48 |
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Frenchie,
to make your Location appear (if you frequently travel on business, you could say, for example "USA and Europe", or "USA and Asia")
you can update it in your profile:
http://www.curemyth1.org/my_account.php?edit_profile=1
& I notice we need you to update your personal profile by adding your most recent D-OH25 result & date tested
thx
Sallie
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Sjogrens; b.cancer; postviral fatigue: D25 7ng/ml@Jly10
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