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Arlene
inactive member
| Joined: | Tue Nov 16th, 2004 |
| Location: | New Jersey USA |
| Posts: | 385 |
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Posted: Tue Apr 19th, 2005 17:12 |
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| How many subjects do you have on the MP? How many have Sarcoidosis, how many have Lyme and how many have Cfids or CFS?
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CFS'93,Lyme/Borreliosis'02,hypothyroid,restless leg, sleep distb, Synthriod,Mirapex,Ambien,DHEA. 12/2/04-Benicar q6h, Mino start 12-31-04, Quercitin Q8H, 1,25D/D 11/04-68/18, 1/05-40/28, 9/05-14/9 PhaseII 4-19-05
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carol
Member Advocate
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Posted: Tue Apr 19th, 2005 20:06 |
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Arlene:
You can do your own survey by reading signature lines and posted progress reports.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Dr Trevor Marshall
Research Team
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Posted: Tue Apr 19th, 2005 20:43 |
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Arlene,
We stopped counting the sarc patients over a year ago, when the total went above 200.
As for CFS and Lyme and RA, there is a significant number who are being treated by their doctors and do not post actively. Their doctors call me directly with questions.
So the best answer to 'how many' is - "more than you and I imagine."
..Trevor..
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paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 669 |
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Posted: Tue Apr 19th, 2005 22:07 |
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I know a lot of people using the MP are off the board, and that the signature line does at least informally provide information regarding diagnosis, but I think it would be valuable to have patients indicate their respective diagnosis/diagnoses in some structured way. Think how useful it would be to look up all users and their posts who have a particular condition. This would be especially helpful for newbies who aren't sure the MP is for them.
I'm not sure that the current version of the message board, WowBB 1.61, allows this, but WowBB promises on its web site to include "custom user profile fields" in the next free upgrade, 1.7. I don't know exactly what they mean by custom user profile fields (customizable by user? by administrator?), but if it allows a user to more effortlessly filter members by condition, I would be all for it.
Paul
p.s. In other news, did everyone see the announcement about the NIH's "Public Access Policy"? A positive step towards the public availability of future NIH-funded medical studies....
http://tinyurl.com/ap5qu
Last edited on Tue Apr 19th, 2005 22:13 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Dr Trevor Marshall
Research Team
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Posted: Wed Apr 20th, 2005 00:29 |
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Paul,
I actually am less interested in the actual diagnosis, as diagnosis is such an imprecise art. I am really more interested in helping people understand that the hundreds of autoimmune syndromes which are Th1 diseases have more similarities than they have differences.
..Trevor..
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paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 669 |
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Posted: Wed Apr 20th, 2005 01:31 |
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Trevor,
Understood. I'm generally familiar with how doctors can vary in their practice of assigning diagnoses to autoimmune illnesses. (I think it was Dr. Jason's lecture on the DVD who discussed this point with regard to CFIDS.)
I just thought that including on the site in a more rigorous way members' initial diagnoses (misleading though they may be) might give the MP a broader initial appeal in the medical and patient communities at large. But... it's your protocol.
That said, would you have doctors assign broader diagnoses in line with MP theory and treatment-- something like Hypervitaminosis D, TH1 autoimmune illness, CWD bacterial infection syndrome, etc?
PaulLast edited on Wed Apr 20th, 2005 01:31 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Dr Trevor Marshall
Research Team
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Posted: Wed Apr 20th, 2005 01:42 |
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Paul,
If you look at the 'Familial Aggregation' panel presentation you will see that some physicians are already starting to do that. I would also add that a number of CFS/Lyme physicians view the two as the same illness. We are starting to make progress.
..Trevor..
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paulalbert
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Posted: Wed Apr 20th, 2005 02:03 |
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An elaboration of that point in the second paragraph:
My friend has lupus but her interest in the MP is tepid at best. "How many people with lupus are on the MP, she asked?" I do a site search and can't find anything. Maybe there is someone with lupus on the MP-- I don't know, but she would definitely be more interested in the treatment if she knew there were others diagnosed with lupus and could read their respective posts
Forgive the comparison, but there's this book I never did read but that I only remember because of its truly remarkable title: The cure for all diseases. Why did I never pick that book up? Well, aside from the fact that the very title seems a bit silly, it was way too general. There are a lot of diseases and I just had one of them. After working my way through 8-10 doctors, I finally got someone, a specialist, to diagnose me with a specific condition: Chronic Fatigue Syndrome, and I was only going to learn about treatments specifically for that condition.
Fortunately for me, I came across an interview of Trevor's on chronicfatiguesupport.com where he spoke about the MP's application to CFS specifically.
My point? Just that a little work towards clearly differentiating all our initial diagnoses would be a nice little welcome mat for new folks. That's all.
Paul
p.s. Ok, just got your reply. Hmm, interesting. A single diagnosis across these subsets of patients would be something.Last edited on Wed Apr 20th, 2005 02:06 by paulalbert
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Wed Apr 20th, 2005 03:16 |
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Paul,
Patients ill for years with Th1 inflammatory symptoms collect a wide range of diagnoses. Doctors have traditionally treated each one as a separate disease because they do not understand the common etiology.
I have several diagnoses that I believe are all due to Th1 inflammation. These labels refer to the damage that the inflammation has done to my body but do not explain why. I much prefer the following diagnostic label because it explains the root cause of the clinical picture.
Hyervitaminosis-D (proven by bloodwork) resulting in symptoms of Th1 inflammation due to systemic chronic intracelluar infection (as evidenced by Herxheimer reaction) and also evidenced by resolution of abnormal bloodwork and inflammatory symptoms with the Marshall Protocol. Not very catchy but it points to the correct treatment which will eliminate the cause and thus the disease/s.
Best,
MegLast edited on Fri Jun 24th, 2005 04:15 by Meg Mangin R.N.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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shamutooth
Member in Phase 3
| Joined: | Sat Sep 25th, 2004 |
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| Posts: | 226 |
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Posted: Wed Apr 20th, 2005 12:10 |
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Meg, that was a fantastic summary,definition of TH1 Disease.Thanks for your dedication and service to us all . Sam
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MCS,CFS,IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29,125D=47;11/13/05 25D=10
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Frans
Member in Phase 2
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Posted: Wed Apr 20th, 2005 14:05 |
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Arlene,
In an older thread you can read this:
Dr Trevor Marshall wrote:
Frans,
Make sure you get a copy of the DVDs (which are being edited right now, available for order later this week) and you will see why HUNDREDS of physicians are currently prescribing the MP for their patients (I estimate about 500 at this point). If you are looking for a curative therapy, it is the only game in town.
..Trevor..
Hope this gives you an idea.
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Lee
Member in Phase 3
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Posted: Wed Apr 20th, 2005 15:52 |
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Hi... I may be able to fill in some blanks here. In 86 I got a spider bite and told I had possible lyme.... and was give 9wks of ax.... sx were relieved till 89.... I had a set-back due to sun(I am an avid swimmer and beach person even surfed).... I got a postive ANA with dx for LUPUS..... due to sudden and severe arthritic symtoms w/ rash. I then tested and had a high titer for CMV and EBV! Another round of meds mainly anitvirals and then.... Ecoli found in my bladder and later received a hyster. in 90.... due to numerous infections many cysts and chronic cervicitis. They gave me a short course of ax.... and .. and some anti-anxiety meds.... and sx resolved slowly. I then got extremely healthy curtailed some of my sun fun.... and took small doses of synthroid and estrogen. I would sleep almost 10 hrs per night ate extremely well alot of fish and kept a healthy weight of 115 and I am 5'6". We bought an rv in 02 and went across country and even lived in sunny NV for 6mth... I noted my weight went to 120.... needing more and more rest and the desert made me cough like crazy and my thyroid got whacky so we moved home (IN) and I was switched to Armour in 03. In the early summer of 04 I awoke to 2 very swollen hot and red ankles with numerous lesions on my soles and palms. After many docs and many more tests I was dx with pulmon. SARC in late fall 04. I was given steroids and told to go home because I had the "good type of pulmon sarc"! HaH! I got right online and found the MPJan 05.... because there is NO good SARC.... and I just started Ph2 of the MP this week....  Can you connect the dots? Oh how I wish they had the internet and MP way back when I first got sick.... but I am so grateful we have it today and it is working so tell your friend with lupus.... to listen up!!! Lee
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2003 SARC w/COPD Hyper-Flex Fibro.
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| 2008 D25-9.7 silymarin/sunlight w/noirs
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19446 |
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Posted: Wed Apr 20th, 2005 21:07 |
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Hi All,
see also new SUCCESS STORIES LINK...
thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Arlene
inactive member
| Joined: | Tue Nov 16th, 2004 |
| Location: | New Jersey USA |
| Posts: | 385 |
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Posted: Tue Sep 20th, 2005 18:02 |
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Hello friends, I heard yesterday from my MPMD that 2 patients from the practice on the MP for slightly over a year are in what the doctor considered approaching the "healed" state.
This was very comforting to me, even with faith in the MP and knowing that Sarc patients could be healed, that there is concrete evidence for healing for Lyme patients. Even though we may all have the same "bug", knowing that your diagnosis has come to a healing point makes a difference in confidence, motivation and anxiety level.
Now I don't know if this is feasible, but could there be an informal anonymous survey for the professionals to see if they have patients who they feel are almost healed and do it in the categories of Sarc, CFS and Lyme? I know that I would appreciate this very much. The MP, miracle that it is, is still long and hard, seeing the goal in a concrete way takes it from the realm of I hope this works to it is just a matter of time until it works for me and allowing us to bit whatever bullet it is to make the MP work for us. Thanks for the chance and the forum.
Sincerely, Arlene
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CFS'93,Lyme/Borreliosis'02,hypothyroid,restless leg, sleep distb, Synthriod,Mirapex,Ambien,DHEA. 12/2/04-Benicar q6h, Mino start 12-31-04, Quercitin Q8H, 1,25D/D 11/04-68/18, 1/05-40/28, 9/05-14/9 PhaseII 4-19-05
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anne p
inactive member
| Joined: | Tue Jul 20th, 2004 |
| Location: | NSW, Australia |
| Posts: | 348 |
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Posted: Tue Sep 20th, 2005 23:37 |
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That is encouraging Arlene
Can you tell me whether these Lyme patients were very ill and for how long?
TIA Anne
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Sx24years CFS/Lyme/ spinalstenosis abx long term Labs 25D,22-1,25D,23.46(unreliable)MP 7/01/05 PH.1.24/01/05,PH2.5/03/05 stopped MP Sept20 resumed phase1 Jan4/06/ somac40mgday Neurontin 600mg 3xday duatrol3xday imigran50mgprn panadeineforte prn
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Arlene
inactive member
| Joined: | Tue Nov 16th, 2004 |
| Location: | New Jersey USA |
| Posts: | 385 |
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Posted: Wed Sep 21st, 2005 00:11 |
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Sorry, I don't know anything else, which is how it should be for privacy issues.
Arlene
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CFS'93,Lyme/Borreliosis'02,hypothyroid,restless leg, sleep distb, Synthriod,Mirapex,Ambien,DHEA. 12/2/04-Benicar q6h, Mino start 12-31-04, Quercitin Q8H, 1,25D/D 11/04-68/18, 1/05-40/28, 9/05-14/9 PhaseII 4-19-05
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