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Joy
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| Joined: | Mon Aug 1st, 2005 |
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Posted: Sun Jan 14th, 2007 02:33 |
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I have a question:
Does being positive for the HLA B-27 gene hinder or influence one's progress on the MP in any way? Are those of us who are positive for this gene likely to continue to experience inflammatory problems even after completing the MP?
My rheumatologist, oncologist, and all my opthalmologists, once they find out I have this positive gene, just sort of close their book at that point and say look no further for the cause of your inflammation, this alone can be the cause. (The oncologist monitors me for a blood protein spike related to inflammation, in the iGg lambda, called monoclonal gammopathy of uncertain significance [MGUS]).
I guess I'm just wondering if this gene plays into the Th1 type of inflammation, and how, and what might be the outcome for inflammatory conditions in B27 positive patients, once the bacteria are dealt with. (but maybe the answer is not known yet since it is early days for the MP?)
Thanks,
Joy
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CFS, FM, MCS, RA, low thyroid.
Began Ph 1 9/06, Phase 2 1/07. Stopped abx 11/07; stopped Benicar 5/09. 25D: 32,17,5,4,4
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Foundation Staff
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Posted: Sun Jan 14th, 2007 04:43 |
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Please see:
How does Th1 inflammation develop? What is successive infection?
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Big John
Guests visiting Phase 1/2/3
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Posted: Sun Jan 14th, 2007 05:09 |
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| Wow! That is really wild.. Please forgive my inability to grasp the understanding if I am wrong, but for those of us who indicate positive testing for HLA B-27 have altered DNA caused by the th1 inflamation?? Am I understanding the gist of this information. Great information! Thanks Meg!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Jan 14th, 2007 14:50 |
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The HLA axis genes are almost certainly mutated, or expressing incorrectly, due to pathogenic processes. Over the last few days I have been discussing this in detail at the "Diseases of Transcription" conference at the Salk Institute. IMO, there is just no evidence for widespread mendelian variation of the HLA axis in the gene pool alone. Pathogenic activities are the only sensible conclusion.
Of course, if you don't understand DNA and miRNA and all the other factors involved in transcription, if you don't understand errors which can occur in the 'gene measurement' process, and if you don't comprehend the magnitude of the bacterial load homo sapiens is carrying, I can see how it is seductive to assume that individuals somehow "carry bad genes." There is just no real science to back up that view, however.
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Russ
Member in Phase 3
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Posted: Thu Jan 18th, 2007 04:03 |
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I came across something that I thought was interesting and relevant to this thread. This case report of 5 family members with sarcoidosis - a mother, 3 of her children, and the spouse of one of the children (non-blood relative) - notes that:
"of particular interest is the fact that two genetically unrelated affected family members (cases 3 and 4) share an identical haplotype namely, A11, B7, DR15. It is not clear from our study what importance should be attached to this finding, but the probability of this occurring by chance is estimated at one in many thousands."
Cases 3 and 4 that are referred to are the husband-wife pair.
Abstract: http://tinyurl.com/yzljja, Full Text: http://tinyurl.com/yekfeo
MP knowledge tells us (I think) that this was not at all due to chance but due to shared bacteria. It's amazing how once you understand the MP pathogenesis all these things you read about in studies that others don't know what to make of suddenly make perfect sense.
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Lyme, MCS, ADD, optic nerve inflammation | Phase 1: Jul '06 | Phase 3: Jul '07 | 25D: 5 ng/ml (Oct '09)
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Jeannine
Board Staff
| Joined: | Sun Aug 28th, 2005 |
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Posted: Thu Jan 18th, 2007 05:27 |
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Wow Russ ...You are so right about understanding TH1 and the MP pathogensis...If you listen or read to news stories on health and medicine..They point to the MP...a couple of great examples are:
For staters... a news story on CBS this evening talking about the brain and how it ages...well we are learning so much about the brain. One of the things is that the brain doesnt age like we thought......so that to me points to a decline in mental capacity..like alzheimer's and dementia to be something that just DOESNT HAPPEN WITHOUT OUTSIDE INFLUENCE...Hince INFECTION.There is also a wealth of information that supports this (some of which you can read on the MP)...well of course there is physical trauma but that is a whole different ballgame...You can watch it here. Epigenetics tells us that little things in life can have an effect of great magnitude."
HUMMM ....so that would include CWD FORMS!!!!!!
Then another article I read in next months Discover.(Feb 07)..quotes this from Francis Collins..(for those of you who dont know he was the scientist at the NIH that mapped out the human genome)....
The interviewer asks:
" Has linking genes to diseases become easier since you began your career at the University of Michigan?"
Collins replied:
"Searching for diabetes genes is much harder than anything I did in Michigan. At that time, I was looking for genes for Mendelian conditions like cystic fibrosis and Huntington's disease. There's one single gene, and if you have the misspelled version of the gene, you are extremely likely to get the disease. Whereas for heart disease or schizophrenia or diabetes, NO SINGLE GENE IS GOING TO HAVE A VERY LARGE EFFECT-these are complex diseases with many genetic and nongentic causes."
It sure would be great if Francis Collins ear could be tuned into the MP science.
Dr. Marshall have you ever met or spoke with him?
If you read here at the MP site ...which I have read now for over a year..watch the DVDs and start to put all the MP science into your head...you start to see the big picture...and the big picture makes total sense..you can start teasing the junk from what is real...
It makes me sad at what I hear medicine saying and doing ...wasting money on needless research, medications and treatments....
The MP has explained every question about my health..and I know for others it has cured their symptoms...and their symptoms were identical to mine....plus my family members and myself can notice a difference on six months of the MP....nothing has ever been able to do that...I have had doctors try to explain their theories but none of it ever made total sense or helped me like the MP is helping me.
Hope you enjoy!
JeanninehopeLast edited on Thu Jan 18th, 2007 05:28 by Jeannine
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CFS FM Lyme Morgellon's Depression/Anxiety 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Posted: Thu Jan 18th, 2007 05:33 |
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Russ,
Your knowledge of the correct pathogenesis of Th1 inflammation has enabled you to understand that the remote chance of this rare disease being found in 5 family members (one non-related) is because it is caused by intracellular bacteria which are communicable.
Please see:
Family Aggregation
Disease Clusters and Husband/Wife Cases
ACCESS STUDY
Does a defective gene cause Th1 inflammatory diseases?
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tibet
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| Joined: | Wed Mar 14th, 2007 |
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Posted: Thu Apr 5th, 2007 15:45 |
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my husbands family appear to have a cluster of TH 1 inflamatory symtoms..uncles aunts cousins etc including dyslexia and asthma..some of which have surfaced in our children...but what always bothered me was that I developed CFS/ME too though I had no genetic family members with these diseases and am in no way genetically related to my husbands family.
stella
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20 years CFS/ME Looking for helpful doctor in UK Have 3 grownup children with disease.
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Sioned
inactive member
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Posted: Thu Apr 12th, 2007 21:10 |
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Hi Trevor: My friend's 30ish son has been dyagnosed with Lymes and after an MRI they have been informed he is developing Alzheimer's. This is pretty devastating for the family.
It's taken them some time to find a doctor to treat him so they're reluctant to change course right now. How do you advise I proceed in order to get them to investigate MP. Scientifically, I'm totally ignorant and don't want to start issuing advice but from what I'm reading Alz. (my mother died of this) is closely associated with this whole Th1/CWD issue.
Obviously, once we find "enlightenment" we want to pass it along. I'm meeting so many people who are just crying out for help. Do you mind if those who are not on MP log on and research the issues? Sioned
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MP 16/02/07; 25D-18.9mg/ml, 1,25D-61.7pg/ml; July'07 25D 7.2;1,25D 30.4;Olmesartan Medoxomil, 40MG y6h; Mino.100mg,q48h; other meds:eliminated 4/4/07; sym.fatigue,stiff joints,poor balance, jaw & ear discomfort,headaches
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jcwat101
Research Professional
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Posted: Sun Apr 15th, 2007 00:29 |
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That's really too bad about that young man being diagnosed with Alzheimers.
A lot of people research issues on the MP site. I don't see that being a problem. Even when one does a search on google, MP links often turn up.
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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GeorgeinRollaMO
Member in Phase 3
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
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Posted: Sun Apr 15th, 2007 04:27 |
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Sioned,
About Alzheimers...
There is reported a pathologist in Duluth, MN that has found borrelia burgdorferi bacteria in a (dead) man's brain. This is reported by Thomas Grier in an article that is posted on the Canadian Lyme Disease Asso. website.
Also, a doctor in Switzerland, found Bb (borrelia burgdorferi) in fourteen person's brain upon autopsy. Try this site address... http://tinyurl.com/8bxnq
Borrelia is just one variety of the fifty-three known pleomorphic bacteria varieties that are suppose to cause the Th1 inflammation.
In both of these reports, the finder reported finding the spirochete form of the pleomorphic bacteria. But whether it is the spirochete form that is causing the problem or the CWD form is not known, at this time.
In any event, I usually think that where there is smoke, there is fire. 
Wishing all wellness!
Dark Vader...aka, George
P.S. And who knows what the other fifty-two varieties of pleomorphic bacteria are capable of doing also along these lines. Researchers are probably just starting to scratch the surface to even think about this.
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Apr 15th, 2007 04:52 |
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Sioned,
There is a lot of fuss at the moment about the organism, Borrelia, and a lot of misinformation what it does. Unfortunately, 'the Lyme community' generally does not understand enough basic science to fully understand the pleomorphic nature of the organism. Borrelia is a complex organism. But Borrelia alone is not capable of generating the chronic disease for which it is being blamed. Some folk are convinced it is responsible for all the world's ills, based solely on the observable presence of the organism, rather than an understanding of exactly how it might cause the alleged disease processes.
Based on the data I now see, Borrelia is a co-infection, which an immune system, weakened by Th1 infection, cannot fully eliminate. But the immune system does fully eliminate the spirochetal form, it is found only in dead tissue at autopsy. In living human beings the pleomorphic variations are present, and they form part of the "flora" of pathogens which are present in just about every Th1 patient. The relative intensity of the various 'flora' changes depending on the severity of the Th1 disease state. Mycoplasma is another of these common co-infections.
Don't get hung up on the specific observable pathogenic species. It is the intra-phagocytic varieties which you can't see, and which you usually don't bother to measure, which cause all the damage (staph, strep, e-coli, propionibacteria, mycobacteria, etc).
ps: Dementia and Alzheimers are (almost certainly) Th1 disease syndromes.
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Sioned
inactive member
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Posted: Wed Apr 18th, 2007 16:40 |
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| Thank you everyone for all of this information. I have copied it to give to my friend. At a conversation yesterday he told me he was taking Pred. and high does of Vit D. These relieve his pain and he's unmovable. Understandable, but so unfortunate. I'm going to try to get him on the site so he can begin the learning process. Thanks again, Sioned
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MP 16/02/07; 25D-18.9mg/ml, 1,25D-61.7pg/ml; July'07 25D 7.2;1,25D 30.4;Olmesartan Medoxomil, 40MG y6h; Mino.100mg,q48h; other meds:eliminated 4/4/07; sym.fatigue,stiff joints,poor balance, jaw & ear discomfort,headaches
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Steven John
Member in Phase 3
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Posted: Thu Oct 25th, 2007 23:15 |
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I just got a call from my rheumatologist with the results of some blood work that I had done recently. This doctor is one I had gone to because he/she put some patients on the Marshall Protocol. He/She told me that of those he/she has on MP were not doing well; he/she suggested that I might want to try other treatments. He/she also said that he'd/she'd rather not put a patient like me (one that has a type of insurance which he/she participates) on the MP as it takes so much of his/her time. The tests included two genetic tests for narcolepsy. He/she did this test because I had reported that one of my symptoms was sleepiness. The doctor called to tell me that one of these tests, for gene DR15, came back positive for narcolepsy. He/she suggested that I might try the narcolepsy drug Xyrem. I told him/her that I thought I had a number of symptoms that could not be explained by narcolepsy. He/she replied that fibromyalgia could explain all my symptoms and that a few patients he/she had with fibromyalgia had all their symptoms diminished just days after they went on Xyrem. I did some research on the Internet and discovered that I don't have all the symptoms of narcolepsy, cataplexy, for example, is one. This is further proof that this diagnosis is inappropriate for my symptoms.
Soon after hanging up with the doctor, I checked for information for DR15 on the Internet. The first reference I saw had to do with the gene's association with sarcoidosis, and lupus (which my mom had). I don't know if it is just my good fortune but a test given to me for narcolepsy has also offered additional proof that I have sarcoidosis. I see this same doctors in a week's time and I intend to strongly request that I start on the Marshall Protocol. For those who might suggest that I choose a different doctor based on my experience with this one, this doctor is the only one in my areas who has patients on the MP and who accepts my insurance. I believe that overall he is a good physician but is not predisposed to putting patients on the MP for whatever reason. He also said that he was not happy that his name had gotten out as one who would be willing to try patients on the MP. I believe he will accomodate me if I have a strong preference for this treatment.
Last edited on Fri Oct 26th, 2007 00:56 by Steven John
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Sarcoidosis/spleen, 125D47, MP 11/07, Lyrica, Zoloft, oxycode, oxycontin, magnesium, 1/08 25D29.1
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Oct 25th, 2007 23:33 |
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he/she put some patients on the Marshall Protocol .. those he/she has on MP were not doing well
That statement is not likely to be truthful, John.
We have had no verifiable reports from physician members in this study that their patients are not recovering as expected, while following the Marshall Protocol.
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Steven John
Member in Phase 3
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Posted: Thu Oct 25th, 2007 23:57 |
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He/she said that if I were put on MP, he would expect me to be very up on the details of the protocol so I could follow it properly as he/she was not very familiar with it. Because of this, I doubt he/she is a physician member of the MP study. He/she also didn't seem to be familiar with the web site. He/she also said he/she was not a sarcoidosis expert. He/she must not be as I had a hard time convincing him/her of the severity of my symptoms that together for me are totally debilitating.  Last edited on Fri Oct 26th, 2007 01:21 by Steven John
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Sarcoidosis/spleen, 125D47, MP 11/07, Lyrica, Zoloft, oxycode, oxycontin, magnesium, 1/08 25D29.1
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Oct 26th, 2007 00:08 |
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Physicians who are not members of this study are not permitted to "put some patients on the Marshall Protocol." Physicians who do not attempt to follow up why their (presumably seriously ill) patients might be "not doing well," with at least the minimum due diligence of discussing that progress, or lack of progress, in the forum we have provided, are, in my opinion, beneath contempt.
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Steven John
Member in Phase 3
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Posted: Fri Oct 26th, 2007 01:10 |
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| Can I discuss this doctor with you or one of the MP site's representatives via email so as to determine if I should be dealing with him/her?
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Sarcoidosis/spleen, 125D47, MP 11/07, Lyrica, Zoloft, oxycode, oxycontin, magnesium, 1/08 25D29.1
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