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ajbot
Member
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Posted: Tue Jan 19th, 2010 13:27 |
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Thanks Joyful and Chris. I haven't had ME for a long time, just about a year and a half, so I hope that I can fall into the group that recovers-which at least is most of the people. It will be interesting to see how I do on the Benecar in a few weeks. Doctors definitely make it very hard to get it here locally. The only MD who would order it was on your list and most of the ones on your list quit doing the Marshall Protocol and only use supportive treatments on patients with ME now. Intravenous Vitamin C and gut detoxification supplements are popular but I'm skeptical. Dr. Oz and Teetlebaum are pushing Ribose thinking that a simple energy boost will fix it. Well I was on plenty of supplements that could have helped energy earlier and they didn't. Even the MD who is allowing me to try the MP, his first choice was the non MP treatments and he said he got mixed results with the MP. I didn't have any gut problems prior so they couldn't have caused my issues.
I did extensive legwork to figure out my illness. It is textbook. I had mononucleosis for two weeks and then received a needlestick injury which probably systemically infected me with a TH1 bacterial strain. Per lab tests the mono has cleared but I continue to have swollen, tender lymph nodes and a sore throat. Gut problems don't explain those either.
The official medical establishment literature tells patients that they have to learn to accept permanent impairment. I bet this is how they treated polio patients before they had a cure for that disease too. If people accept it then they won't bother their MDs asking about experimental treatments. So much for the herioc medicine depicted on television. Modern GP MDs are cowards.
Last edited on Tue Jan 19th, 2010 13:45 by ajbot
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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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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
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Posted: Tue Jan 19th, 2010 22:52 |
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Hi AJ, 
Please PM Carole with your doctor list experience. We are constantly trying to sift that list and keep it helpful.
So many doctors trained to "do it by the books" for insurance reasons, for fear of medical review reasons, and so few that are willing to advocate for the patient. 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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ajbot
Member
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Posted: Thu Jan 21st, 2010 15:58 |
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| Will do. I just stumbled on a highly rated infectious disease specialist who is looking over the MP. No promises yet but he said he's open to trying it and will get back to me. If he does I'll pass his name along.
____________________
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: Mon Jan 25th, 2010 22:25 |
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| Is 5-HTP banned? I need to treat some depression and was thinking of adding it to my SAM-e regimen.
____________________
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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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
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| Posts: | 582 |
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Posted: Tue Jan 26th, 2010 04:42 |
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Hi AJ.
Did you try searching using the Google Custom Search (top, right of this page),
or in the MP knowledge base?
This page should have something: Non-MP treatments
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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ajbot
Member
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Posted: Tue Jan 26th, 2010 14:48 |
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Hi Joyful,
I tried both the search and read the article. It's not listed as a banned OTC supplement and antidepressants are allowed so I think it's ok.
____________________
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: Wed Jan 27th, 2010 03:02 |
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Moderators,
For the past few weeks I've been taking hot baths to warm up, generally twice daily. After receiving a huge electric bill I realized that I could use the apartment complex's sauna (non-infrared). So I take two 25 minute sessions twice per day and this seems to be helping my lymph nodes decrease in size. I feel like I have a bit less fatigue in my eye muscles too. I searched the site and non-infrared sauna's are not contraindicated. I am unable to get a fever so I figured that since my body likes the heat perhaps it is helping my immune system function better as a fever would. Any comments? Should MP patients start wearing reflective fat suits to work?
Here's a reference:
(Rea WJ Pan Y. The treatment of patients with mycotoxin-induced disease. Toxicol Ind Health. 2009 Oct-Nov;25(9-10):711-4.)
Last edited on Wed Jan 27th, 2010 03:19 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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Cynthia Schnitz
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| Location: | Arizona USA |
| Posts: | 551 |
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Posted: Wed Jan 27th, 2010 18:02 |
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You may have a problem with the sauna after you start ABx. Heating up your body can cause the antibiotics to reach deeper into the tissues and make the antibiotics more effective giving stronger IPs, so you need to watch for problems with the sauna. Cynthia
____________________
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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Joyful
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Posted: Thu Jan 28th, 2010 03:00 |
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Hi AJ.
Clearing the lymphatic system is helpful. But Cynthia has a point.
Did you search on sauna in the MP knowledge base? I suspect you did. Also search on baths. Hot baths can make you feel better, and then, when the antibiotics get deeper due to the heat, the IP can surprise you.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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ajbot
Member
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Posted: Thu Jan 28th, 2010 15:52 |
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Cynthia thanks.
Joyful,
I've done hot baths but like I wrote, they are expensive to do daily because of the electricity and are no where as effective as a sauna. The sauna has definitely reduced a lymph node below my jaw noticeably. It's interesting that after the sauna for a few hours I have more energy but when I sleep and wake up it doesn't last. My waking body temperature continues to be at 97 deg F which is one point lower than it used to be.
I just returned from an infectious disease MD who emailed me that he reviewed the packet of information I gave him and that the Marshall Protocol had weak support according to the standards of traditional medicine. He didn't go into specific details. I'm still waiting for him to get back to me with an opinion of treatment suggestions.
It's discouraging that there won't be any more clinical trials and the phase 2 study was never published. No wonder MDs aren't accepting this.
Last edited on Thu Jan 28th, 2010 16:08 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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Cynthia Schnitz
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| Posts: | 551 |
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Posted: Thu Jan 28th, 2010 19:26 |
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Hi AJ. I get cold every time I sit for more than just a few minutes, and have now for many years used a hot water bottle on my lap. Works great for keeping the temp up, but don't know if it would have any effect on the lymph nodes.
Results of the Phase 2 study were given at the 6th International Congress on Autoimmunity:
http://mpkb.org/doku.php/home:publications:perez_congress_on_autoimmunity_2008
The Phase 3 study will take place at West China Hospital (WCH), which is probably the largest research hospital in the world. Most of the information on WCH and the study are on pages 2 and 3 here:
http://www.marshallprotocol.com/forum39/13328.html
And the press release here:
http://mpkb.org/doku.php/home:arf:072109
Cynthia
____________________
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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Joyful
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Posted: Fri Jan 29th, 2010 08:22 |
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AJ, I think I was interested if you read this article in the MP KB on Baths?
(See: http://mpkb.org/doku.php/home:othertreatments:baths)
Also, did you provide this ID doctor with published articles?
(Here is a list of peer reviewed published articles: http://mpkb.org/doku.php/home:publications)
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Sallie Q
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Posted: Sat Jan 30th, 2010 06:17 |
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AJ
my body temperature used to be so low I sometimes wondered if I was alive, and I needed a hot water bottle on my feet to be able to get to sleep at night.
After months on the MP I only need hot water bottle for occasional cramps in my feet. I am doing well now in many ways.
My fatigue used to be so chronic I never had a diagnosis for this, thought it was just me :-(
Also be aware that after starting Benicar, at some point your D25 will drop into a range which increases herxing in a surprising way. This can happen very soon or after many months
Sallie
Last edited on Sat Jan 30th, 2010 06:28 by Sallie Q
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b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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Marysue
Moderator
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Posted: Sat Jan 30th, 2010 07:14 |
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aj--I can appreciate your desire for hot baths and saunas. I have struggled to stay warm for years with temps as low as 95.5. A reading of 96.0 was common. Now it's rarely below 97.5. Anyway, I think it's possible to use various forms of heat while still being careful about IPs. I use a hot tub just long enough to warm up and help me sleep better.
And, Cynthia--I use "canine" hot water bottles because I never have to reheat them. Here are two of my favorites:
MarysueLast edited on Sat Jan 30th, 2010 07:16 by Marysue
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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: Mon Feb 1st, 2010 00:49 |
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Cyn,
Thanks for the study info. There’s another thread here that says there won’t be a Phase III. Good to hear that isn’t correct.
Joyful,
I think I did provide that link to the articles. So far he’s slow to respond to email. I don’t want to hound him.
Sallie,
Thanks for the warning. I can’t wait to see how my body reacts. It’s been four months just to get the prescription and meds. Every standard medical doctor turned me down.
Marysue, 97.5 is considered normal so that’s a great improvement.
____________________
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: Mon Feb 1st, 2010 13:45 |
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Has anyone noticed that Herx is worse in the morning and then lets up a bit later in the evening (especially after a sauna-not on abx yet)? This isn't happening every day but I have noticed it occasionally. It also seems lessened after I eat but less so after scaling back carbs.
I just learned that tryptophan (aks 5HTP) is immunoprotective. It also really helps after meals to knock out carb cravings.
http://www.news-medical.net/news/2005/11/07/14284.aspx
(Steinman. Science. Nov 2005)
In an animal model, Steinman's group has found that certain tryptophan metabolites - molecules formed as the body breaks down the amino acid - work as well as any other existing medicines to alleviate multiple sclerosis symptoms. In multiple sclerosis, the immune system launches an attack against the myelin sheath, the fatty cells that insulate neurons. The resulting variety of neurological disorders affects more than 2.5 million people worldwide.
Soothing the overactive immune system of autoimmune diseases such as multiple sclerosis requires something that can suppress the attack. In their studies, the team discovered that a drug chemically similar to metabolized tryptophan is suppressive to the immune system. This drug, marketed as tranilast, has been used abroad in clinical trials for other indications and appears safe.
Last edited on Mon Feb 1st, 2010 14:38 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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Cynthia Schnitz
Member
| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
| Posts: | 551 |
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Posted: Mon Feb 1st, 2010 19:05 |
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ajbot wrote: I just learned that tryptophan (aks 5HTP) is immunoprotective. It also really helps after meals to knock out carb cravings. Immunoprotective?? CS
(Steinman. Science. Nov 2005)
Soothing the overactive immune system of autoimmune diseases such as multiple sclerosis requires something that can suppress the attack. In their studies, the team discovered that a drug chemically similar to metabolized tryptophan is suppressive to the immune system.
As an immune suppressant, it would be contraindicated on the MP.
AJ, I think you need to be more skeptical of all supplements. Better to follow the advice in the MP instructions to avoid all supplements unless a true deficiency can be demonstrated with medical testing. It is not possible for Dr. Marshall to track down the good and the bad of all the hundreds of supplements that are out there. Cynthia
____________________
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: Mon Feb 1st, 2010 19:54 |
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Cynthia,
You are totally right. This royally stinks. My body craves tryptophan and is giving me huge carb cravings which are causing overeating, poor digestion (gas, bloating) and weight gain. I guess the improvement I've been feeling has been due to surpressing my immune system. I'll stop the 5HTP immediately. Thanks for alerting me to this.
Does anyone else have an idea how to manage carb cravings? Should I just snack on protein and avoid carbs? I dread the weight gain.
____________________
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
|
Cynthia Schnitz
Member
| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
| Posts: | 551 |
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Posted: Mon Feb 1st, 2010 20:24 |
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My own solution is to eat a large salad every day. BUT, I have had my suspicions for some time that there is something in the greens or the vinegar that may be an immune suppressant as over the years I have noted that when I feel bad, a salad can really straighten me out in a hurry. So, restricting my self to once a day seems to be workable as I have made tremendous strides in the 15 months I have been on the MP:
Cynthia's Anniversary Post
Nuts are good too. I keep them ready to munch anytime I get the urge to eat. Also, small frequent meals is a really good idea, as you keep the blood sugar low, even tho you can eat a lot of carbs when the total for the day is added up (15-30 carbs every 2-3 hours). It is a great ploy to keep low carb and still assure your loved ones that you are getting the carbs you need. Cynthia
____________________
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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Cynthia Schnitz
Member
| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
| Posts: | 551 |
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Posted: Mon Feb 1st, 2010 20:39 |
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| By the way, weight gain on the MP is common, as well as weight loss, but my observation of my gain on the MP is that it is likely an increase of inflammation in the tissues as apposed to a true gain in fat. I have had less appetite lately and a lot more exercise, and the weight is still going up, tho very slowly. Cynthia
____________________
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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