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Scottk
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Posted: Mon Feb 11th, 2008 16:40 |
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I am desperate to get on the mp but because I took daily rocephin for 8 months, I have gall stones. One stone infected my pancreas and liver in december and my pancreatitis still flairs up every 4 weeks (I swear it seems to follow a herx cycle) . Do you think it is safe to start the mp in my situation? I understand I will have to take the advice of a physician and any advice you give is just an opinion. I am not concerned about benicar giving gall stones, more if my other organs are not ready for the side effects.
I was diagnosed with ALS in september 03 and in 06 the Bowen institute found Bb bacteria at a serial dilution of 1: 128. I have no antibodies to Bb bacteria. In april 07 I started rocephin and very slowly improved (the first ever improvements) . I stopped rocephin in december and in january 08 I was 1: 8 serial dilution. I have still ALS symptoms.
Could you give me any advice?
Many thanks!
Scott
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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GeorgeinRollaMO
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Posted: Tue Feb 12th, 2008 08:26 |
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Scott,
Welcome!!! 
I will take a "crack" at giving you what information that I have to assist you to make the decision yourself.
If you will go to Report from EICS Conference 19 Nov 2004 you can read what Dr. Marshall thinks about IV Rocephin.
My wife had tested with some titers for Bb by Igenex, and tested Positive by Bowen, too, and had done the IV Rocephin for two and a half months. She felt better for awhile, then didn't feel so good any longer. She has since tested positive for the Th1 inflammation. I think that she is waiting for me to be further along with the MP to start herself. Wives never listen to husbands!!! 
I had tested Positive by the Bowen RIBb test at the highest dilution ratio... 1:128, too. I had a few titers for Bb. I am amazed that you did not have ANY titers on the WB test. Or, are you just using the wording "Negative" for Lyme that is always given on the report, too, if one did not have five out of a certain ten titers. Did you get a copy of both reports? Usually Igenex will give a listing of the titers that a person had. I had three titers, I believe, but not enough to qualify for CDC REPORTING as having "Lyme disease".
If you had the highest dilution ratio on a Bowen, you definitely had/have at least one variety of the pleomorphic bacteria L-forms in your body. If there were such tests available, and at a decent price, you most probably would find other varieties of the pleomorphic bacterial L-forms, too. But don't go chasing for these other tests.
The only tests that you really need, is the 125D hormone and 25D tests.....preferably done by Quest Diagnostic Labs... to know if you have the Th1 inflammation. Quest has been shown to have the most reliable results as compared to other labs. The double test procedure code is # 5678.
Gall stones are thought to be a product of the Th1 inflammation.
ALS is thought to be a product of Th1 inflammation.
Before becoming familiar with the MP thinking, I thought that what described my condition best was the common expression "neuroborreliosis". I wondered if that was the prelude to ALS.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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Scottk
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Posted: Wed Feb 13th, 2008 17:58 |
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thanks george!
I never saw the wb results, I was just told they were negative. Interestingly my serial dilution has gone down to 1: 8 so does anyone have an opinion on whether that means the rocephin did kill some cwd bacteria? The reason I ask is that jo anne Whitaker noticed that the majority of the bacteria she found was in the cwd form - if I went from 128 to 8 does that not mean some of the cwd bacteria was killed? Have you done a Bowen test since you have been on the mp?
I am currently trying to find a doctor, do the doctors have to do much apart from prescribing?
All the best
Scott
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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GeorgeinRollaMO
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Posted: Wed Feb 13th, 2008 20:50 |
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Scott,
This is very typical, "I never saw the lab results, I was just told they were negative."
Go back to that doctor's office, and request a copy of the report. You have a legal right to a copy of the report!!!!
My wife's sister had taken her son to a doc, too, for such test by a different lab, and was given the exact same story..... "The report says 'Negative'". Upon getting the report, and reviewing it, I noticed that the blood was drawn on the Friday before Labor Day, and the lab did not work on the blood until some number of days after Labor Day. That sample sat around decaying. The doctor did not even realize it that the antibodies are fragile, and will destruct. Or, he was wanting a report of "Negative" so he could get out of treating for "Lyme"....a controversial malady.
Another test done properly by Igenex showed not only that the boy was "Positive" by CDC criteria of at least five titers out of a certain ten titers, but gave the listing of ALL sixteen titers that LLMD's think are indicative of having at least "borreliosis" and not just "Lyme disease", which by definition is very limited. He had eleven such titers.
Titer # 31 is so specific for Lyme that that is the titer that was given/used by the vaccine companies to develop a vaccine for Lyme (which failed)....yet, titer # 31 is NOT allowed to be included in the five of a certain ten titers. Grrrrrrr!!!! You have caused me to remember the inadequencies of governmental regulators. As I mentioned earlier, I had three titers that showed for borrelia bacteria, yet because I did not have at least five, the lab had to use the wording, "Negative".... for REPORTING "Lyme disease". I most certainly did have borrelia bacteria which is one of the fifty-three varieties of pleomorphic bacteria that develop CWD or L-forms....and cause the Th1 inflammation. And I most certainly did have the Th1 inflammation with a 125D hormone of 57 pg/ml.
Getting such a definition/diagnosis of "Lyme" may be important for your insurance, but for your personal puposes knowing that you have too high of 125D hormone and possibly 25D, also, will tell you whether you have a Th1 inflammation. Remember, testing for borrelia bacteria is just testing for one of fifty-three varieties of pleomorphic bacteria. You most probably have a soup or stew of the L-forms. There are no good or cheap tests for them. Nor, do we necessarily know all of them. Modern era microbiologists say that we have only discovered and studied 0.4 % (yes, zero point four... less than one percent) of ALL bacteria.
Yes, it is possible that the Bowen test dilution ratio went down. However, that test as well as almost all other tests are just measuring what is in the blood at any moment of time. It is what is in the cells of the body, especially in the cells of the immune system's macrophages, that cause the Th1 inflammation, and keep it going. It is possible, IMO, to wipe out the CWD from the blood, but still leave them to do their dirty job elsewhere....in even greater numbers, particularly if Rocephin, or other CWI antibiotics, were used. The antibiotics used with the MP are the PSI type, which interrupts the synthesizing of protein by the bacteria, so as to weaken them for the immune system to kill them off. The CWI antibiotics only cause the bacteria to change form.
And it is the knowledge of PSI antibiotics, and the computer molecular modeling of them, that has allowed Dr. Marshall, Phd, to choose the correct PSI antibiotics so as to get at the 30, 50, and 70 ribosomes of the bacteria. This assures almost perfect protection against developing antibiotic resistance.
CWI antibiotics cause the bacteria to form L-forms and live in their alternate, and maybe, preferred forms. Over-schooled and regimented medical doctors do not know about this difference. They actually contribute to the antibiotic resistance problem...and do not know why!!!
Yes, I did the Bowen since doing the MP, and my dilution ratio did go down. However, I had to take a three-month-plus vacation due to hurricane Katrina damaging my Mother's house. When I went back on the MP, my Bowen had gone back up. IMO, demonstrating that the bacterial L-forms must live in the cells and macrophages as stated by Dr. Marshall, and NOT in the blood. IMO, they use it as a means of transport around the body.
The doctors Rx the meds and keep a check on your overall health...mostly. I gave a copy of the Phase I Guidelines to my doc. Don't let the doc be scared by dosing the Benicar in more than the RDA. See the FDA Insert/Label.... http://tinyurl.com/asyfc Especially on page 2, near the bottom. No bad effects when dosing even at what is use on the MP.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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Scottk
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Posted: Sun Feb 17th, 2008 12:48 |
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hi george,
Thanks for replying with such a comprehensive and well thought out email.
I live in the uk and logistically it is difficult for me to have the vitamin d tests. On reading the posts about what the results mean, it appears that any result can or could indicate inflamation. I have also read that some people do not do the tests before starting the mp. Would I be supported by the mp team if I did not do the tests and started phase 1? Are the d ratios used by the support team to formulate the correct treatment for me?
I think I might have to buy the meds on the internet and go on the advice of the mp team. I will obviously go to a doctor for kidney and liver function tests etc. Could you tell me what all I should get my doctor to check for and how often?
I was looking for side-effects of benicar and I found a blog about people who think that benicar gave them kidney stones. I read the article on the mp site about kidney stones which said that the stones are due to th1 inflamation and not benicar. Do you have an opinion on this? Is there anything I can do when on the mp to help prevent kidney stones? Obviously having just got gall stones from the rocephin I am overlly concerned about this.
I hope you are well, best regards,
Scott
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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Julia
Advocate (on leave)
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Posted: Sun Feb 17th, 2008 14:54 |
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Scott,
Please see kidney stones. Note that it says there,
Kidney stones are not frequently reported by the MP cohort, as one aim of the MP is to lower the level of 1,25-D to values which do not leach the calcium from your bones.
A number of members had kidney stones before they started the MP, and have none now. See, for example, Guss Wilkinson.
I found some non-MP posts about Benicar and kidney stones, but they all seemed to be about Benicar HCT. HCT is a diuretic contraindicated on the MP. I suppose if you take a diuretic without drinking enough water, it might encourage stones - this is my non-expert guess.
Would I be supported by the mp team if I did not do the tests and started phase 1?
Yes.
Are the d ratios used by the support team to formulate the correct treatment for me?
No, only the 25-D, which is easy enough to get done, even in the UK.
I think I might have to buy the meds on the internet
I think this is illegal, and a reputable company would still want a prescription. You must have a supportive (even if sceptical) doctor to do the MP. I doubt if your GP would be prepared to monitor you if s/he wasn't prescribing (insurance).
How many docs have you approached so far? Have you taken along some printouts of the main MP papers, with the most essential bits highlighted? See Suggestions To Get Your Doctor On Board With the MP. Some members have had to change GP.
Could you tell me what all I should get my doctor to check for and how often?
The medical moderators can advise on that when you get started.
Scott, I understand that you're frustrated by years of illness and treatments that have got you nowhere; nevertheless it will be well worth your while to invest some time now in doing this right
Good health, safely!
Julia 
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Scottk
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Posted: Sun Feb 17th, 2008 16:45 |
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| many thanks julia, I will get the support of a GP before I start the mp. I will also try and get both d tests done, do you know if a GP has to arrange the tests or can you do it independently? What is the name of the laboratory in manchester? What do you think the fastest way to get them done, ie would I have to go to the laboratory to get my blood centrifuged?
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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ShandyM
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Posted: Sun Feb 17th, 2008 16:49 |
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Are Kidney Stones frequently seen in TH1 illness? I only ask because I have a strong feeling my fiance' has TH1 and we have just found out he has Kidney stones. They will not pass even though and he has had them for months. He is in a lot of pain 
Thank you
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NO defintive Dx| MP 12/07| Joint/ muscle pain palpitations/ tachycardia dizziness vertigo vision problems/ floaters/ blurry, headaches nausea| 1,25D=29,25D=7| stay indoors, avoid D, NOIRs
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Dr Trevor Marshall
Research Team
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Posted: Sun Feb 17th, 2008 21:48 |
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Shandy, yes, kidney stones are very common in Th1 illness. Many are formed by imbalanced calcium metabolism. When they pass, you should have Doc see what the stones are made of, as confirmation of that.
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Julia
Advocate (on leave)
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Posted: Sun Feb 17th, 2008 23:21 |
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Scott,
I've just been looking up the Manchester assay centre, and I see they say that the 1,25-D sample needs to be clotted and frozen, but doesn't mention centrifuging after clotting. I'm not sure what Dr Marshall would say to that, as the D-Metabolites instructions say
The sample should be allowed to settle and clot at room temperature for at least 30 minutes (but no more than two hours) and then centrifuged. Do not hold on dry ice prior to centrifuging.
-After centrifuging, freeze at between -2 and -10 C.
-The sample must be transported on dry ice in order to remain frozen until it reaches the testing lab.
[I'm interested to see that they mention the use of the 1,25-D test for sarcoidosis, yet my endocrinologist just looked at me blankly when I suggested he might like to test my 1,25-D as well as the "vitamin D" (= 25-D) he wanted.  ]
In the D-Metabolites information, it says about the UK,
drawn at my local hospital, tested at Manchester Supra-Regional Assay Service (SAS) Centre
SAS 25D/1,25D assay page:
cost (NHS would not fund) - £100 (GBP)
SAS protocol includes freezing and I also spoke to the lab technician to confirm. ~Nikolai
"Depends where you live and whether your doc would be happy taking the blood for you. There are several lab's in the London area, and a lab in Manchester. You could get a BUPA hospital to take the blood, but it needs to be frozen before sending to the lab. The logistics are awkward and it is expensive which is why I never bothered." ~Jobell
Any Nuffield Hospital can do the tests you require. Simply get a letter from your GP requesting which tests SPECIFICALLY and be prepared to part with almost £200. They are not available on the NHS. ~Rainbowcatcher
25-D is available on the NHS and may be done at any big hospital's lab, as far as I know. It shouldn't be hard to get a doctor to order it. 1,25-D is another matter altogether. If a doctor orders it, it might be done on the NHS, but then, getting a doctor to order this expensive test would be difficult.
Julia
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Scottk
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Posted: Mon Feb 18th, 2008 12:48 |
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thanks julia,
I noticed they mentioned sarcoidosis in the test uses, I am sure the mp will soon be a standard treatment for it - even on the NHS! I think it will be futile to try and get the sample centrifuged if the sas centre do not say that. It does make it easier to do without centrifuging at least.
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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Scottk
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Posted: Tue Apr 1st, 2008 15:49 |
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There seems little doubt that CWD bacteria are present and responsible for chronic lyme disease but with regard to Lida Mattman's research in to ALS, where she states that -
bacteria causing [highlight= #88ff88]ALS multiply rapidly and are, therefore, very aggressive http://www.marshallprotocol.com/view_topic.php?id=9805&forum_id=37&highlight=+Lida+Mattman+ALS+++
Does any one know if CWD bacteria is found in the blood of healthy people? That is, is the presence of CWD bacteria in the blood of ALS sufferers significant?
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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Tickbite
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Posted: Tue Apr 1st, 2008 18:09 |
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scott,
I suppose CWD forms are in the red blood cells. However, I don't think that is the means as to how CWD forms produce their most devastating affects. Their presence within the cytoplasm of white cells may be a more important factor.
I think it is pretty well known that everybody carries much CWD form "soup" within them. How much and to what extent these forms interact with the human body is currently quite difficult to understand. I suppose the talk has been about "normal" healthy aging and accelerated aging due to specific microbial soup.
Bottom line in my opinion. Heck yeah CWD forms in ALS is significant.
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Phase 3, MP since 6/06, "Lyme Meningitis Fatigue Syndrome"
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Julia
Advocate (on leave)
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Posted: Tue Apr 1st, 2008 22:35 |
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Scott,
Have you seen Cell Wall Deficient Bacteria and the MP? As Tickbite says, we all have some of them, but they need triggers of some sort to cause serious symptoms. It doesn't matter what label the medics stick on them - what flavour of soup we each have, if you like - the fact that the bacteria are to blame is confirmed by the response of so many folks with different 'soups' to the MP.
Julia
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Scottk
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Posted: Wed Apr 2nd, 2008 11:57 |
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Thanks tickbite and julia, I guess the significant thing is that Lida found aggressive CWD bacteria. I actually found an article after I asked the question and it said that about 40% of 'healthy' people had CWD bacteria.
Julia, I got my d tests done in glasgow on the NHS for free but I am still waiting for the results - for 6 weeks now!
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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Chris
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Posted: Wed Apr 2nd, 2008 21:17 |
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Does any one know if CWD bacteria is found in the blood of healthy people? That is, is the presence of CWD bacteria in the blood of ALS sufferers significant?
That begs the question of who's 'healthy' ... The fewer the CWD (in blood & tissue), the healthier you are, IMHO.
I think you are missing a point Lida Mattmann made about ALS. It was the specific variety of CWD associated with ALS that was aggressive. She was not saying that the other CWD bacteria are 'safe', just that the disease progression when infected by the other CWD varieties is much slower than in ALS.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Scottk
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Posted: Thu Apr 3rd, 2008 12:08 |
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thanks chris. Am I right in thinking then that Lida Mattman saw the aggressive cwd bacteria as the cause of ALS?
In the UK at the moment there is a big controversy over human - animal hybrid embryos. Scientists are using stem cells from the hybrid embryos because human embryos are so hard to come by. They will not use them for treatment but instead for trying to find out about the disease process in ALS, parkinsons etc. Having ALS symptoms and lyme bacteria in my blood (I was 1: 128 serial dilution) I think cwd bacteria are the cause (I have photosensitivity on benicar) but why are the 'worlds top scientists' spending millions on using stem cells to try and determine the disease process?
This leads me to my next question which is: If lyme bacteria and lyme antibodies were found in 88% of sarc patients in the Beijing study, 40% of ALS patients in a 1990s New York study and almost every case of CFS and MS, is the lyme bacteria the cause or are the bacteria simply able to take advantage of a weakened body but are not the cause? Has Dr Marshall addressed this question ever?
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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JRFoutin
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Posted: Fri Apr 4th, 2008 23:43 |
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Scott,
It is frustrating to sort through which single pathogen is really the cause of all the suffering you are going through. Koch's postulates, suggesting only one unique pathogen per disease, has set the medical world on a similar wild goose chase of confusion and distraction with regards to research.
If you have spent a lot of time looking through the Koch disease prism and considering only vector insects like ticks, then it is a common outcome to believe that must be the primary cause of your grief. You are not alone, there are a lot of medical professionals and researchers caught up in that perspective right now too.
But that is why the Marshall Pathogenesis -- utilizing molecular genomic insights brilliantly -- is so important to understand. Unfortunately, this pathogenesis is often overlooked when people are searching for an action plan to get well -- the more popular Marshall Protocol.
A simple diagram first arranged by Gary Kays (and later refined for Meg Mangin's Karolinska DMM 2008 presentation) can help clarify why the Marshall Protocol's focus on enabling the VDR is the only way to conquer Th1 inflammatory disease processes, regardless of what co-infections are involved. You can see Meg Mangin's .pdf preprint here.
That diagram at lower left on page one, with the poor little character pulled into a cycle of disease, also helps us understand why the other percent of sick folks cited in those stats you quoted above -- that don't have any tick involvement -- must enable their VDR to get well the same way as the percent that do have a vector insect co-infection.
Net: no matter what pathogen mix or co-infection load, the VDR must be enabled with the Marshall Protocol to restore health.
Plese don't take too long to get started if you are planning to do the MP. Do get your supportive family members updated with MP details so they can help you. ALS moves quick.
Best to you Scott--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Scottk
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Posted: Mon Apr 7th, 2008 16:38 |
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Thanks very much Janet, that is very helpful. I guess the lyme disease alternative diagnosis debate intrigues me because although the mp postulates that ALS is caused by cwd bacteria and is therefore treatable, before it was a case of; lyme treatable, ALS not, and since I had the borrellia burgdefer bacteria in my blood at a serial dilution of 1: 128 it was important to me if the existence of the bacteria was significant. I now believe the borrellia bacteria probably is not the cause of the ALS symptoms but was either the only bacteria identified in my blood and/or the other bacteria, that are responsible for the ALS symptoms, used the borrellia as a vehicle to enter the body. Am I right in thinking that trevor is saying that in the following extract? :
We have shown how the susceptibility to Th1 inflammatory diseases most probably accumulates over a lifetime, and many of the elements of susceptibility seem to occur in the pre-natal or neo-natal timeframes. It is thus misleading to focus on the tickbite as being "the cause" of the chronic disease. And treating the patients for tickbite pathogens does not return them to 'health'.
Only when the underlying innate immune system overload is addressed, by the MP, does the Borrelia titre start to disappear, along with the signs of other pathogens. Susan explained this very well during her talk about her own recovery from chronic Lyme, in the "recovery" panel session at our 2006 LAX conference..
.. But there is no indication (at this point) that Borrelia, acting on its own, can evade phagocytosis. A strong immune system will kill it. But an immune system weakened by other chronic Th1 pathogens cannot deal with the challenge Borrelia poses.
Again, I continue to maintain that Borrelia burgdorferii is not the primary cause of Chronic Lyme symptomology. Chronic disease is due to a mixture of pathogens, accumulated over a lifetime. http://www.marshallprotocol.com/view_topic.php?id=3139&forum_id=37
I am on my 3rd week of the mp and my benicar experience suggested I am ill with th1 illness but I have not experienced any major herx reaction from the minocyline.
Thanks again - Scott
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1,25d 46.25 pg/ml. 25D 14.8ng/ml.Ratio 3.125. ALS 2003, muscle wasting; neck, shoulders, arms, hands, dropfoot. Speech somewhat affected, breathing and swallowing affected very little. Emotional.Bb bacteria serial dilution 1:128 2006. noirs
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Julia
Advocate (on leave)
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Posted: Mon Apr 7th, 2008 18:57 |
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Scott,
I'm thrilled to hear that you got both tests done - and on the NHS! - and that you're now on the MP  If you've found a friendly doctor, you might like to see (in due course, as you start to improve ) if s/he would be willing to take on anyone else, as I don't think we've anyone prescribing in Scotland yet.
If you're still waiting for test results, a few phone calls might speed them up. Six weeks is looong even by NHS standards!! I suspect they may have sent the 1,25-D to Manchester and that's what's holding things up - though Manchester is scarcely the other side of the planet.
Happy herxing!
Julia
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Always consult a physician
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