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Juanita
Member
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Thu Sep 10th, 2009 19:52 |
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For me? I don't have a clue. Not one. I walk my MP path in faith that the science is solid and that as long as I take my pills.... some day I'll be zippy again.
I just passed my two year anniversary of going on the MP. I can't say I'm a shining example of how this treatment can make your thighs smaller or make hamburgers in under ten minutes (tv commercials), but slowly and steadily, I have more of my mental faculties, which had died a horrible death and I couldn't even do grade two math. I feel more myself again. I have more energy. My MCS reactions to chemical exposures are less intense and last for shorter lengths of time. And the heart arythmea that had stalked me since I was 9 has disappeared. My periods are finally regular and normal again instead of arriving every 14 days to hang around for 10 heavy flow days.
I know that there wasn't any other answer for my MCS. None. We hunted like rabid dogs, tried everything that seemed even the tiniest bit reasonable. Even moved the whole family out into the rain forest of the West Coast to live in a cabin with no running water or electricity in the hopes of giving our bodies a break from the world's chemical spewing.
The day I found the MP.... I cried. We'd all given up and felt that at lthe very least the middle daughter and I weren't going to reach old age and would never be free out in the world like normal people.
So I don't care how long it takes for the MP to work. For us, there are no other solutions. And this is working. It's a slow journey, but it's working. Our middle daughter just started one university class this Fall. One class, but it means everything to us! We were without hope for her and now she's able to take one class. Wow.
And so to stay on topic... our idea of a cure is to be taking our pills while we go to school, keep a job, go to the movies, be able to buy our own groceries, and live like regular people. Minus the cigarettes and perfume and heavy cleaners.
We had no hope. Now we have hope and the beginning of excellent results. How long it takes to get more.... that is what it is. One of the lessons of this treatment is to let go and let bacteria die. We aren't in control of that. Just in control of staying on treatment until we feel we're ready for what's next.
From the bottom of my heart.... thank you, Dr Marshall. Thank you, thank you, thank you.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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marion villa
Member
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Posted: Thu Sep 17th, 2009 00:58 |
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Hi all.
for me I guess I would be considering myself kinda cured when this fatigue resolves, and the light issue ,the GI symptoms, and the dry eye.
Because all else symptoms are better, no doubt, no swollen joints, no underskin bumps, no skin holes!!, no erithema nosodum, I am not an arthritic lady, you know? I am more like a stomach cramp, dry eyed lady....a fatigued one.
but happy
at least some days
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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marion villa
Member
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Posted: Thu Sep 17th, 2009 01:01 |
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Juanita escribió:
The day I found the MP.... I cried. We'd all given up and felt that at lthe very least the middle daughter and I weren't going to reach old age and would never be free out in the world like normal people.
And so to stay on topic... our idea of a cure is to be taking our pills while we go to school, keep a job, go to the movies, be able to buy our own groceries, and live like regular people. Minus the cigarettes and perfume and heavy cleaners.
We had no hope. Now we have hope and the beginning of excellent results. How long it takes to get more.... that is what it is. One of the lessons of this treatment is to let go and let bacteria die. We aren't in control of that. Just in control of staying on treatment until we feel we're ready for what's next.
From the bottom of my heart.... thank you, Dr Marshall. Thank you, thank you, thank you.
Juanita:
I couldtn have expressed this things better than you!!!
I am crying now
you are all right
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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expate
Member
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Posted: Thu Sep 17th, 2009 03:32 |
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Somehow, it always makes me happy to read your thread... except when you're feeling donw.
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Juanita
Member
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Sun Sep 20th, 2009 21:26 |
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Well, thank heavens for that, Odette!  If you'd giggled like a fiend on one of my bad day postings...... 
I love that we can tease each other and share our stories here. Who else understands what and why we do what we do each day?
Thrilled to see you post, Marion! I missed you.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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marion villa
Member
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Posted: Mon Sep 21st, 2009 02:10 |
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girls!!
you are so great. I love all of you very much, and a few mp guys either.
kisses and hugs!!!
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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laura1814
Member
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Posted: Tue Sep 29th, 2009 07:14 |
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Juanita and John, I think you both expressed it very well.
I have been on the MP 21 months. I will stay on for as long as it takes.
My goals are: to have energy, to be at a normal weight without having to worry about hypoglycemia, to be able to hold a job-- no, have a career, to be able to take care of myself, to be able to go out into the world and do the shopping I need to do (not to mention working), to have my brain back, to be able to travel, to not need to worry about light exposure, to be able to perform, to be able to enjoy outdoor pursuits.
In an ideal world, my gray would be gone, my hair would be long and thick again, I'd have no GERD or dysphonia, no tinnitus, no hypoglycemia, no pain, no heart disease, and be fertile. I think several, perhaps all, of these are real possibilities.
If it takes me five more years or ten more years, I don't care. I know I will get there eventually and be able to have a life, and that's all that matters.
Before the MP, I just hoped that one day I would feel better, but I had very little expectation of it. I wouldn't go back to that for anything. As far as I am concerned, I had nothing to lose and have lost nothing from the MP. If I hadn't started the MP I'd still be sick and just hoping. Now I may still be sick, but I've made measurable progress and I'm not just hoping, I know.
I am so grateful to have found the MP, and that Dr. Marshall enabled me to find the path to wellness.
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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marion villa
Member
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Posted: Tue Sep 29th, 2009 23:07 |
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juanita laura all of you guys:
Do you notice how disphonia has striken us!!! I have forgot to mention it, I used to take singing classes before MP until one day I suddenly developed a swelling in the throat choking and aphonia...... Id like to be healed about my real voice again and to yell aloud again!
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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laura1814
Member
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Posted: Wed Sep 30th, 2009 09:32 |
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I am a singer! Several years before the MP I was diagnosed with GERD and given Nexxium even though the only symptom I had was hoarseness after singing, and very mild occasional heartburn. The Nexxium really helped and freed my voice, but when I started the MP, I quit taking it. A couple of times since then when I have really wanted to sing (like for a big solo in my church choir's concert) I have taken drugs for it, but I am not singing now and so only take ranitidine occasionally when I have indigestion or heartburn, which isn't very often.
I would love to be able to sing and perform regularly again. I may try to sing this spring when the symphony is performing Beethoven's 9th but I won't decide until much closer to the time when I can see how I'm feeling and what the rehearsal schedule will be. I've sung it several times so not participating this time wouldn't be a disaster, but we have a new conductor and I don't want to miss out. I've actually been fortunate in the timing as the chorus hasn't performed for the last two years while they've been looking for a new conductor!
Sorry for rambling, but it struck a chord.  I really miss singing. I haven't sung regularly since starting the MP; the rehearsals and performances are too draining. I don't even play the piano as that is very tiring too.
Last edited on Wed Sep 30th, 2009 09:34 by laura1814
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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Freddie Ash
Member
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Posted: Wed Sep 30th, 2009 14:17 |
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HI LAURA
This is Fred in WV. I am not a doctor or even a singer, just a member in phase 3, but your talking about the hoarseness reminds me about my problem with it. I was wondering how they diagnosed you with it being caused by the Gerd.
In my case the doctor looked down my throat and told me my vocal cords were inflamed with the sarc. And then on another time another doctor was checking my esophagus with a light and when he came in to see after doing it ask me if I had ever been told I had sarcoidosis of the vocal cords. So my hoarseness was casued by the sarc effecting the vocal cords. So that is why I am asking how they diagnosed you with Gerd causing it.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Wed Sep 30th, 2009 18:55 |
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Interesting Freddie and Laura about the GERD... my only GERD symptom was rare mild heartburn and hoarseness and my ENT just looked down my throat and pronounced it GERD. Of course, my symptoms got worse after eating and after drinking anything including water. Seems I also had the laying down and the sitting up kind of GERD. I took the drugs and then later they started talking surgery and I stopped going and stopped the drugs and looked for alternative remedies. Then, I read that many people with CFS have GERD and I decided it was just part of my overall illness and I was not going to be someone on a pile of drugs that had their own risks. Then, I found the MP and decided to let the process run its course.
While not a singer, I had to give up singing in the church choir before I became totally disabled because of fatigue and general irritability, something so many of us are familiar with. It was driving me nuts that our choir director was choosing pieces so way above the abilities of the untrained voices in our choir, which resulted in our feeling under prepared and embarrassed when singing many pieces, that I couldn't take the stress. Of course, had I not been so tired I probably wouldn't have been so irritable either, and I would have been able to handle the choir director's choices. Indeed, she was open to us suggesting other pieces because all she knew were choral pieces (aside from the standards in the hymnal), but I didn't have the energy to go in search of melodies I thought we could handle to give us the change of pace she was looking for (that is, a change from the standards).
Sorry for getting us so far off track!
Yes, like most posting here, I am in it for the long haul.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Freddie Ash
Member
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Posted: Wed Sep 30th, 2009 20:23 |
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HI CLAIRE
This is Fred in WV. Thanks for your input on the GERD. It seems like a lot of TH1 patients seem to have the GERD and vocal cord problems. I have ran across several with these problelms since I was diaganosed with the sarc back in 1982.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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laura1814
Member
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Posted: Thu Oct 1st, 2009 21:26 |
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Fred, my experience was pretty much like Claire's. Actually I asked my choir director if I was doing something "wrong" vocally that was leading to my hoarseness after singing, and he told me to go to the ENT. The ENT looked down my throat and said the hoarseness is caused by little bits of acid from the stomach, which can happen even in the absence of recognizable heartburn. He prescribed Nexxium, and it fixed the vocal problem. I have always had mild heartburn after eating spicy foods, and never thought it was something worth trying to fix with prescription drugs, but the Nexxium caused me never to suffer a twinge, which was nice. These days I only take the prescription drugs if I'm planning to sing.
Claire, I can understand that kind of stress. My church choir is actually almost semi-professional. I counted up music degrees once and the percentage of people who have them is impressive, around a dozen in a group of about 40. Sometimes people who just "like to sing" join our choir and become intimidated and quit. (What's worse are the people who really can't sing but think they can and stay! ) But although I number among those with a degree in music, I used to suffer from very bad stage fright and found singing at church very stressful, week after week, and thus even more tiring than it ought to be (it also wrecked courtroom work for me!). I love choral singing though and need to make music in my life, and so it was the one thing I stuck with during all the years of my illness. I knew the group was special and wanted to be a part of it. Anyway, I fixed the stage fright with hypnotherapy about five years ago and then discovered great joy and freedom in performing, including solos. That makes me miss singing all the more, but I am not ready to push myself to the degree I would have to do to commit to go back. I will someday and that just has to be enough for now. It would be too hard physically to go, and I would spend all the rest of my time recuperating from it.
I think of the MP as an extended retreat. It is a great relief to not have to force myself to go anywhere.
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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Aunt Diana
Support Team
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Posted: Sat Oct 3rd, 2009 20:37 |
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This is such an interesting thread. I had no idea that GERD could be the cause of my hoarseness or total lack sometimes of a voice at all.
Is Nexxium allowed on MP? If so, I'll buy some today.
Thanks for this information everyone.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Carricol
Member
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Posted: Sat Oct 3rd, 2009 21:07 |
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| GERD is generally caused by a weakening of the Pyloric valve that seperates the esophogas from the stomach. When it weakens it allows the contents of the stomach to leak through the valve and into the esophagas and sometimes the larynx. I had it for years mostly at night. I was prescribed Zantac and Aciphex to counteract the acid in the stomach. They didn't stop the leakage. It just meant that the contents of the leakage was less acidic and did less damage. I got Bronchitas and some hoarseness also from the contents leaking into my lungs and voice box. The answer I got was that as we age the valve slowly deteriorates, faster in some than in others. I am now coming around to believe that the deterioration of the valve is caused by TH1 pathogens and may be reversable. Last edited on Sat Oct 3rd, 2009 21:10 by Carricol
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Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Sat Oct 3rd, 2009 21:56 |
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Carricol, I am with you. I think, for the most part, GERD is reversible (just as some of the normal aging process is reversible because it is more TH1 related than simply a wearing out) or at least the TH1 related part of it is. I also think that the loosening of the Pyloric valve is similar to what happens in urinary incontinence. And hypermobility syndrome.
I think whatever processes are causing the Pyloric valve to loosen is also causing other similar failures in the body; some are more noticeable than others because of the consequences of those failures. For example, many folk may have hypermobility syndrome and not know it because an ankle joint hasn't slipped out yet when walking or their knees aren't hyper extending yet. Doesn't mean the process isn't taking place or they couldn't be diagnosed with hypermobility if a doctor familiar with it thought to check it out.
I think it is all intimately tied to Th1 illness (depending on one's pea soup) and we ought to see all of that get better with time.
Claire
Last edited on Sat Oct 3rd, 2009 21:58 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Freddie Ash
Member
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Posted: Sat Oct 3rd, 2009 22:25 |
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HI DIANA
This is Fred in WV. I have been on NEXIUM for some time now, I was on it before the MP. I have been trying to ween myself off of it, because some time ago I saw a list of meds that the list said doctors would not take and NEXIUM was on the list. I can go 3 to 5 days right now with out having to have one. I was having heart burn when the doctor gave it to me. So I do not recomend any one to start taking unless it is the last resort.
Also, to add to my post above, the first doctor to tell me sarc caused mine, he also told me that he had seen patients where the doctors had to surgericaly remove the sarc from the vocal cords. I never had to have that one done, yet.
Carricol is most like correct on their view. I too believe it is a TH1 disease caused problem. Remember, I am not a doctor, this is my opinion only on the subject and what I have learned on my own over my life time.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Sat Oct 3rd, 2009 22:51 |
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I think doctors (or at least some doctors) would not take Nexium or drugs like it because I remember reading how taking that drug made one less able to handle a deadly stomach bacteria that was going around. (At the time several people had died in Northern VA from the condition.) Apparently stomach acid must be necessary somehow to killing that bacteria. Whether this is an issue on the MP or not I don't know. I just know I decided to avoid that class of drugs as well.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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marion villa
Member
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Posted: Sun Oct 4th, 2009 00:35 |
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guys:
I used to have gerd long ago, before MP, because in part of the nsaids I tood, well I still take some, but I was over weigh then, i started a low car diet, no milk, no bread,no rice,no pasta, no beans or so... no sugar, little fruit, proteins and green leaf vegetables, olives, tomato or v8 juice,diet jello,little oil for salads, well, then the GERD just vanished as magic....it never came back, I never ate again like a normal person but it was worth it. MP diet is more or less like that, my hoarseness went so bad, even without the GERD, just my vocal cords got very swelled,i couldnt talk, just whisper for 4 months, breath with difficult and to swallow too. I think that bugs in the connective tissue, in cord, or pilorus or cardias or in the urinary meatus make our bodies to leak whatever is inside the other side of the valve.
I also used nexium for a while with not much side effects, but I was told to take it with empty stomach and to wait 1 hour before to start eating. I dont take it anymore.
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Aunt Diana
Support Team
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Posted: Sun Oct 4th, 2009 03:23 |
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| Thank you all for the good information. This site is better than Wikepedia!!
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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