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ajbot
Member
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Posted: Thu Sep 24th, 2009 15:43 |
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Hi everyone,
I have some questions about Th1 infection. In Aug of 08 I contracted mononucleosis after intimate kissing with an ex-girlfriend who was being promiscuous with other men. After a few months I developed progressive muscle dysfunction and was finally diagnosed with chronic fatigue syndrome 11 months later. I had a 1-25 D test done which was high normal 63/64. My throat and jaw lymphnodes are always sore and enlarged. I'm trying to persuade my internal med MD to put me on the MP protocol and he is reading the online material with a decision in a few days.
Here are my questions.
1) Did I pick up the cell wall deficient bacteria from the girlfriend at the same time as the mono? Does mono make people susceptible to CWD bacteria infection? Can I give this to anyone else by kissing them? Could I get it again if MP works and I'm cleared?
2) Does anyone know any UNC or other physicians in Raleigh, NC who are using MP on patients?
3) I am off most supplements but have to take supplemental minerals (Country Life Total Mins w/o Iron) or I start having breathing problems. I think this is due to low minerals in vegetables. I didn't see this contraindicated in the supplement list. I'd also like to stay on COQ10 as preventative for heart problems. Is there any problem with these? How am I supposed to get adequate omega3 w/o fish oil? flax only?
Thanks
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 507 |
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Posted: Thu Sep 24th, 2009 18:00 |
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1) [A]Did I pick up the cell wall deficient bacteria from the girlfriend at the same time as the mono? Does mono make people susceptible to CWD bacteria infection? [C]Can I give this to anyone else by kissing them? [D] Could I get it again if MP works and I'm cleared?
A- you likely had some before then, and may have picked up more at the kiss.
B- CWD makes you susceptible to mono. But exactly which bug compromised your immune system is not knowable with the current state of the art.
C- yes. But whether they catch anything depends on their immune system.
D- yes. The MP will fix your immune system, and your immune system will clear your body of infections. The MP will not make you into a superman, nor change your taste for dangerous women.
3) I am off most supplements but have to take supplemental minerals (Country Life Total Mins w/o Iron) or I start having breathing problems. I think this is due to low minerals in vegetables. I didn't see this contraindicated in the supplement list. I'd also like to stay on COQ10 as preventative for heart problems. Is there any problem with these? How am I supposed to get adequate omega3 w/o fish oil? flax only?
The supplement you mention has iron in it, which is to be avoided when on the MP. http://mpkb.org/doku.php/home:othertreatments:vitamins
And so are omega-3 oils: http://mpkb.org/doku.php/home:othertreatments:efas
You really need to consult with your doctor on the breathing problems, and check the two links. There are reasons to continue with iron while on the MP, but it's definitely a question for your doctor to answer.
Chris
Last edited on Sun Oct 25th, 2009 05:16 by
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Cynthia Schnitz
Member
| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
| Posts: | 554 |
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Posted: Thu Sep 24th, 2009 21:37 |
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You might want to find a source of grass fed beef that is known to have much higher levels of omega 3 fats, as they get it from the grass they eat.
http://www.bar10beef.com/why_grass_fed_beef.amp
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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ajbot
Member
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Posted: Fri Sep 25th, 2009 21:41 |
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Cythia,
I don't like to eat red meat since more than one serving per month has been shown to promote colon cancer. I also like to spare my fellow mammals from dying just so I can have a burger if possible. I guess flax seed and walnuts will have to do. I do miss the salmon though.
Chris,
The supplement Country Life Total Mins Iron Free has no iron.
Interesting thinking that I could have had CWD bacteria prior to the mono. In the past I was employed as a electrophysiology technician and had a few needlesticks. At the time I was concerend only about the usual blood born diseases, but it seems like perhaps I could have picked up this CWD bacteria there too. Maybe that CWD were able to increase their infection as a result of the mono to the point where my body mounted an autoimmune response that affected the muscles? I noticed that the muscles are made out of the same embryonic tissue as lymph nodes (mesoderm).
Interesting but I still HATE it. It is incredibly frustrating trying to deal with the doctors who are clueless about this.
I wonder if I filed a workman's comp claim against the employer if I might be able to get disability insurance from getting CWD from a needlestick. It seems that even if the patient who infected me was positive they wouldn't probably have known it since it is so hard to culture this stuff and i might not be able to prove it.
Thank you.
Last edited on Fri Sep 25th, 2009 22:00 by ajbot
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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ajbot
Member
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Posted: Sat Sep 26th, 2009 02:15 |
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Also, should I email Dr. Marshall for a referral for a MP friendly doctor in Raleigh, NC?
Thank you.
Requesting a Doctor (please click here) Please Read the first post carefully - Thank you, Admin.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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rchl60
Member
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Posted: Sat Sep 26th, 2009 02:58 |
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| always remember its your immune system which determines what malady can become a problem.one cannot blame any externals for a problem within.therefore concentrate on benicar,the mp abx,and no vit d.which is in flax.hold the coq10 till later .benicar willprotect heart.remember we are bornwith all these bacteria in us already so worrying about "picking"some disease up is futile
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rchl60
Member
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Posted: Sat Sep 26th, 2009 03:05 |
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| your inluck a mp md just moved from fl to nc.whowas treat a lot of pts.
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ajbot
Member
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Posted: Sat Sep 26th, 2009 14:46 |
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| Please list his name so I can get in touch. I hate my docs at Univ of North Carolina.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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rchl60
Member
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Posted: Sat Sep 26th, 2009 19:33 |
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| your contact is marysue .she mentioned the md moving to nc from fl.it was in the "can i get benicar without rx"forum.
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ajbot
Member
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Posted: Sat Sep 26th, 2009 19:40 |
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| thanks I'll message her.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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Marysue
Moderator
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Posted: Sat Sep 26th, 2009 21:06 |
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Chris answered:
D- yes. The MP will fix your immune system, and your immune system will clear your body of infections. The MP will not make you into a superman, nor change your taste for dangerous women.
Thanks for the clarification, Chris! And I thought Benicar was truly a miracle drug. 
Marysue in Florida
"thankful for the first cool wave of Fall--it's only 89 now."
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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rchl60
Member
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Posted: Sat Sep 26th, 2009 21:11 |
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| ajbot is trying to contact you about mp md who moved from fl to nc.i am movingto delray bch soon.know of anyone in area?charlie
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Marysue
Moderator
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Posted: Sat Sep 26th, 2009 22:14 |
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I sent a pm to both ajbot and rchl60 re: MP doc.
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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ajbot
Member
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Posted: Thu Oct 15th, 2009 19:31 |
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I have a few more questions and an update.
First, why can't I have whey protein powder?
Is chicken and (non-blood) sausage gumbo soup ok?
Are tortillas and sub sandwich rolls outlawed because of the enriched flour?
Is chinese food off limits because of the fish sauce?
Is SAM-E ok to take for depression?
Are anti-depressants ok to take? Specifically Effexor? I was reading the side effect profile and it looked like it could increase inflammation. I also was wondering about any possible VDR effects.
Update, I'm making progress finding a provider. The Univ of North Carolina hospital internal medicine got rid of me as a patient but I searched 30 or so private clinics in the area, called and asked them if they would consider prescribing an off label treatment and one said yes. They are a nurse practitioner practice and welcomed the impressively designed physicians info packet. I told them that if they decide to treat me that there would be more patients in the area interested in coming to their office. It is looking good. They ordered the 25D and 1,25D profiles for me. The advice to target generalists rather than specialists was excellent. I came in telling them was that my problem was a TH1 infection and that the standard therapy of graded exercise was rejected by a PT and that counseling had not helped. I was sure to tell them that the treatment has passed phase 2 testing with flying colors and was obtaining a 90% cure rate as opposed to 10% for conventional therapy.
Allen
Last edited on Thu Oct 15th, 2009 21:47 by ajbot
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 507 |
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Posted: Fri Oct 16th, 2009 01:23 |
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First, why can't I have whey protein powder?
See: http://mpkb.mp-dev.com/doku.php/home:othertreatments:whey_protein
Is chicken and (non-blood) sausage gumbo soup ok?
See: http://mpkb.mp-dev.com/doku.php/home:food:vitamind
Not knowing what's in a real gumbo, I;d be guessing on this one.
Are tortillas and sub sandwich rolls outlawed because of the enriched flour?
Moderation in these things. Tortillas just aren't that big.
Is chinese food off limits because of the fish sauce?
Mostly. Depends on how much, and your reaction.
is SAM-E ok to take for depression?
Are anti-depressants ok to take? Specifically Effexor? I was reading the side effect profile and it looked like it could increase inflammation. I also was wondering about any possible VDR effects.
See: http://mpkb.mp-dev.com/doku.php/home:diseases:depression
Anti-depresion meds are ok, as prescribed. But the page on depression does have several caveats you should read.
--Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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ajbot
Member
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Posted: Fri Oct 16th, 2009 03:06 |
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Chris,
Thanks for the info. I just realized that I'm eating a fortified peanut butter that contains flax and folic acid. Are walnut the only source of omega 3 I can tolerate now that fish oil and flax are prohibited? I suppose with the hidden D that there's no way I can know if the Walmart Body Fortress vanilla protein I was eating has vitamin D?
My instincts about the Effexor were correct. I didn't like how closely the side effects were matching cytokine effects and suspected that it was affecting them adversely. No point taking them for sure.
Looks like Sam E is also problematic with the homocysteine.
Tricky, tricky
Last edited on Fri Oct 16th, 2009 03:14 by ajbot
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
|
Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 507 |
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Posted: Fri Oct 16th, 2009 03:20 |
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Why do you think you need omega-3 oils?
http://mpkb.mp-dev.com/doku.php/home:othertreatments:efas
Drop the supplements, eat food not supplements. Try beef jerky instead of some funky powder. It probably costs less anyway. And it fits into Dr Marshalls suggestion to eat what your grandmother did, or at least some grandmothers might have eaten.
VitaminD is so well thought of by the health-food crowd, that it wouldn't be unusual that the ingredients were chosen to include a bit of D. Naturally included D need not be on the label.
--Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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ajbot
Member
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Posted: Fri Oct 16th, 2009 15:01 |
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>Try beef jerky instead of some funky powder.
Commercial beef jerky is loaded with added msg and hydrolized vegetable protein that are appetite stimulants. It never fills me up.
I never have that problem with home made but it's a hassle to make with CFS.
Last edited on Fri Oct 16th, 2009 15:04 by ajbot
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
|
Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 507 |
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Posted: Sat Oct 17th, 2009 04:33 |
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Just like everything else today, there's a health-food version of jerky available: Mountain America Jerky, no filler, no additive, no MSG, no nitrates ...etc etc. That one is on CO.
That's just the first one that came up on a google search for 'beef jerky without additives'. Add North Carolina to the search and you get 'Joe's Beef Jerky' in Statesville NC. You might find a maker of no-additive jerky closer yet to home with a little diligence. Or maybe a store that sells one of these varieties.
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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ajbot
Member
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Posted: Sun Oct 18th, 2009 01:42 |
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To diverge from the beef jerkey. I was going through my work history to try to figure out how I picked up the TH1. My past job was as an EEG technician so I had to learn to put subdermal needles in patients. I obtained a needlestick on 7/30/08 that seems to have been the entry point and caused me to start getting noticeable fatigue and muscle twitching. One month later I got mono which complicated the picture. I automatically attributed everything to the mono but now looking back I think that needlestick was the start of the infection due to the timing of the fatigue.
I think I'm getting photophobia even though I'm not yet on Benicar. It's about 2 months with no edible D or sunlight and I feel miserable. I'm getting headache every day that is worsened by light. Is that photophobia? Probably time to order the shades. Please advise. I guess this means I'm doing well.
Also, I've been taking large doses of advil (1200 mg to 1800 mg/day) stacked with 1-2 tabs extra strength tylenol to manage the pain. Is that ok? Dr doesn't have a problem with it.
Last edited on Sun Oct 18th, 2009 01:45 by ajbot
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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