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A Dialog on MP Risks

First Email Second Email    

First Email

I am wondering how you were able to come up with the increased risks associated from doing the Marshall protocol vs the protocol that you created? In fact, you actually say that the risks are based upon information obtained by the NIH vs YOUR protocol. Well, how does a comparison between some info you found on NIH and your protocol translate into risks from doing the Marshall Protocol ?

Answer: The risks are based on studies between people not taking any Vitamin D supplements and 2000 IU of Vitamin D3 [Click here for links to studies]. It is a reasonable inference that the risks would be higher for someone who is intentionally attempting to avoid Vitamin D. In some cases, the studies were based upon observed levels of Vitamin D3 (not 1,25D), with the universal result for studies on the general population being the lower the D3 levels, the higher the risks. The protocol being compared to was one that advocated at least 2000 IU/day of D3 and optimal Vitamin D3 levels -- effectively the opposite approach as MP.

 I am very curious about how you came up with that data and would love to see a sample of it. Do you have a medical degree?

  • Answer: I have a Master of Science with my thesis being on statistical analysis of medical treatments. I have read professional medical papers and attended lectures by University Medical staff since I was 14 years as part of a gifted child program.

Have you tried the Marshall Protocol and developed any problems or know of anyone that has developed any problems from following it?

  • Answer: I have not personally tried it, but two family members tried it with severe side effects that took over 11 months to reverse (the length of time they were on it). I know many of the early CFIDS MP patients from before MP and not a single one that tried it are currently doing it --- all of them have bailed. Many were early MP board administrators/moderators.

 I see that you state that there is a 100% increase in risk of having a heart attack when doing the MP. Do you have ANY proof to back that up?

  • Answer: From doing MP explicitly NO, studies of higher risks from being low in vitamin D3, ABSOLUTELY. I just checked the literature again, and it is not 100% but 300%. Thank you for pointing out to me that I was understating the risk. See this article stating
    • In summary, the data shows that individuals with significantly sub-optimal levels of vitamin D3 are three times more likely to suffer a heart attack than those who maintain optimal levels. "

Do you know anyone who suffered a heart attack as a result of following this protocol ? As a patient I am concerned with everything written about this (and any medical advice).

  • Answer: No, but even if I did, that would not be applicable as proof. What is needed is a proper study that follows all of the patients that tried it through a couple of years. To the best of my knowledge, there is not a single academic study in progress in this area.  With no such information, we must use information from studies on Vitamin D levels and heart attacks (this article)

I am currently on the MP, mainly because either nothing has worked for me in the past, or the doctors have sent me home saying that I am not sick enough yet (which is horsesh**). I have been doing this for 6 months and have had really wonderful results - better than anything in the past. I have been pretty sick and already I notice a CLEAR remission in some of my symptoms!

  • Answer: Clear remission of some symptoms is what I expect to see in many people. My concern from my reading of the literature and what is happening is that the you may be suppressing the immune response, hence the symptoms that are immune response symptoms may reduce or disappear. The side effect is that you are disabling the body's ability to fight the infection --- which then grows unchecked. I've seen this typical pattern:
    • Prior to MP: 300mg of a tetracycline with no herx
    • On MP and then severe herxing from 25 mg of same tetracycline
    • Off MP and no herxing from any antibiotics when Vitamin D3 is up to optimal levels (and gradual remission of symptoms across the board).

    Some people claim that Benicar potentates antibiotics -- but there is nothing in the literature to support that, nor is there a warning on the package insert that there can be an interaction (and Benicar is widely used) -- so I do not find that claim credible.

I have seen two websites including this one, bashing Dr. Marshall (yes I know, not an MD) but I have also talked to several patients personally...on the phone...which are doing very well on the MP. Their results are just amazing!

  • Answer: You will find the same type of response from every treatment, there is a percentage of patients that perceives things are better. In some cases, it is because they need the hope and thus will reject contrary symptoms for psychological needs. The definitive solution is to get an objective third party study done -- I've done polls on CFSFM Experimental as a stop gap. They are far from ideal, but they are third party (Yahoo) controlled from a population of CFIDSers that existed prior to MP. MP is the HIGHEST RISK protocol out there according to the latest poll results.

I guess ultimately I am asking what your motive and basis for the accusations of the increased risks are ?

  • Answer: The word accusation is inappropriate. I have asserted that there are increased risks based on my readings of studies.

I quickly (admittedly) went over your site and you also seem to advocate the use of antibiotics. Is the benicar usage the ONLY thing you cite as potentially dangerous? Is it just at the prescribed levels? Obviously there are many people taking this drug for high blood pressure (which I have anyway), so if it is prescribed for people with high blood pressure and one has high blood pressure , what's the problem?

  • Answer: No my concern is not for Benicar -- Benicar needs to be adequately monitored. The real risk is from suppressing the immune system by going Vitamin D deficient. I have no hassles on people taking Benicar provided they are adequately tested prior to the start and have their clinical labs done every 3 months. I would hope that MDs would immediately stop the Benicar if there are any concerns over their clinical lab results. The problem is that aldosterone is often very low with CFIDS (described here) and Benicar is reported to cause a significant drop when used for one year. This can put a poorly monitored CFIDSer into a life threatening situation.

Also...have you seen the warnings that come with all of the other anti inflammatory drugs ( and virtually every drug on the market for that matter!) including the steroids, TNFa drugs, etc?

Answer: Yes -- which is why I (and my family) traditionally avoid all prescription drugs when possible.

I'm happy to start a dialogue with you.

Sincerely,

Norman Wetmore, Dec, 2005

Second Email

Another question. Do you know of any people with, say, sarcoidosis that are responding to antibiotic therapy while taking vitamin D?

Answer: No -- I do not have contact with sarcoidosis patients except from those that have grave concerns or horror stories about MP.

I know the past few times that I have been in the sun I have felt REALLY sick afterwards, which seems to coincide with what Dr. Marshall is saying.

Answer: Your response is completely believable -- some people doing Vitamin D3 supplementation could only tolerate 20 IU/day of Vitamin D at the start (they worked up slowly to 2000 IU/day and in their latest posts, report that there are at 70% now, compared to 20% before). At the simplest level, vitamin D is an important moderator of the immune system, getting some D when you are deficient causes the immune system to react strongly -- and immune response is usually what causes you to feel sick.  I have seen 200 IU at the start of Vitamin D supplementation causing a CFIDSer body temperature go from 96F to 103F for 3-4 hrs and then return to 96F -- again, temperature rise is an immune response [FYI, they are now running a normal body temperature instead of subnormal).

I hear what you are saying re: shutting down the immune system, and that is why I am experiencing some relief, but isn't that what the traditional doctors are doing when they are prescribing steroids where they are attempting to shut down the ENTIRE immune system? Shutting down the entire immune system, however, doesn't seem to be the answer.

Answer: I'm in complete agreement here. Suppressing symptoms is often the cure [to complaining patients], but is not the type of treatment that both you and I wish.

I'm going to have to re-read your response re; the herxing with the antibiotics, but a few questions come to mind....Even on your website don't you talk about herxing? What differences are you talking about in particular...and isn't herxing good ?

Answer: I prefer a no-herx treatment because many people cannot tolerate much herx. As Dr. Jadin writes, it is a good prognostic sign that the treatment is working (which, if moderate, can result in better patient compliance). So it is a balancing act at best. There is an ugly situation at present when herx is being misapplied to adverse drug reactions. Long before this confusion of herx versus drug reaction, I assembled what was available on telling the difference on my herxheimer page, if there is any question about whether the response is a herx, please have the Lab Tests described at the bottom of that page done -- if it is a drug reaction - the drug should be discontinued.  Herxing is good only when it results in patient compliance and is of a moderate nature for a reasonable duration (hours or 1 half-life of the drug).

You said that some people that started the MP had problems and are no longer on it? What problems did they have? Are they available to talk to ?

Answer: The people and their posts are available at:

 Believe me, I am only trying to help all involved (including myself). Do you know of anyone who was on the MP and actually developed ANY of the problems that you suggest might happen?

Answer: Yes, many from prior to MP appearance in the CFIDS world, see above posts

I know you commented that "some" of my symptoms have disappeared and that is what you would expect, but do you know of any patients who have been treated for 6 months under any treatment plan that have experienced a resolution of all of their symptoms in 6 months?

Answer: No, for six months, for 9 months yes -- both of which were doing Jadin's protocol, getting Vitamin D (by getting a lot of outdoor time in the sun) and doing Hemex anticoagulant therapy.  I was one of them and have been in full remission for 5 years now (the other one is also still in remission). I do not know if it will work for sarcoidosis, but believe that it has merit for a study.

Since you seem to be a bright individual, have you discussed any of this with Dr. Marshall? What has been the outcome. I mean, in general the good thing seems to be (in my opinion) that you both believe that the diseases are caused by bacteria. It's just how you attack them that you differ. I think dialogue between all parties that believe that this is the cause should talk.

Answer: I've tried getting a dialog going but have received legal threats in response. Other individuals that dared to disagreed has been sued.  It was what I deemed to be an inappropriate response that caused me to do a critical examination of MP.

I mean, it seems like steroids are the WRONG approach, would you agree?

Answer: I'm in complete agreement here. Suppressing symptoms is often the cure [to complaining patients], but is not the type of treatment that both you and I wish. Western medical science may not have the complete answer - so I have been looking at the real Indian medical system recently (see http://indianmedicine.nic.in/  ) and have found some interesting items.

Lastly, do you have people on your protocol that are doing much better? Do any of them have sarcoidosis or lupus?

Answer: For Sarcoidosis I don't think so. I There are some with lupus as a part of their diagnosis -- you can read people experiences at CFSProtocol. Note that this is controlled by Yahoo, and any deleted messages will show up as a missed message number -- thus any editing or filtering is clearly seen by all. This is not the case with other boards.

Another question: You state that there is a 300% increased risk of having a heart attack from doing the MP , because an article states that there is a 300% risk of  having a heart attack in people who have sub optimal levels of D3, which I believe is the vitamin D and not the converted form of 1,25 D , right? 

Answer: Yes -- Researchers concentrate on D3 which is stable and has a long half life (~ 3 months). 1,25D is volatile (changes quickly) and has a short half life (~ 6 hrs) which usually means that study sizes must be much larger and usability for therapeutic uses is difficult. A person that walks in from a typical parking lot on a sunny day may get a 1,25D spike.

 Mr. Marshall states however that , in the case of sarcoidosis patients, most have increased levels of vit D ( when I initially had mine done they were 68 / 31 ). I understand that Merck states the high end of normal is 45.

Answer: Merck gives the average seen in the population. This is different than the optimal rate (the rate seen with the best health outcomes). In recent news, there has been much talk about the US population being overweight, but if Merck's reported the average weight in the population -- would you use that to guide your health? Take a look at this New Scientist Article titled "90% of US Men over 60 now overweight", using the simple average approach, only 5% of men can ever be overweight -- and there is no health issue. I prefer to see what the life-expectancy outcome of various weights are, and then make a determination based on the effects of the weight. A study in FLORIDA (the sun state) found that hypovitaminosis D "was 38% and 40% in men and women"[Study] - using levels many deem to be 50% too low according to recent publications. The most recent literature for vitamin D suggests that optimal Vitamin D levels should be between 100-300 nmol/litre or 40 - 120 nanograms/milliliter.
 

Prior to starting the MP I avoided sunlight, fish, etc and they came down to 40/8. I know the 8 sounds low, but I am told the ratio is the problem. The ratio of 5 ( as supported by research on pub med) indicates that this is a problem with sarc patients and that there is an unregulated conversion of vit d to the hormone (1.25) version of vitamin D.

Answer: My understanding is that the "D-ratio" was proposed many years ago by one researcher and subsequently discarded when data from larger samples found that it was not as reliable as desired. Using a ratio between two variable substances can be dangerous and misleading, especially when the literature report that 1,25D can increase as a result of vitamin D deficiency in healthy people. Can you please provide me with the links on pub med that uses the D-Ratio, I would like to review those articles and any followup done on them. If you are creating the ratio yourself by dividing reported numbers, you are probably ignoring many aspects of appropriate intrepretation.

Evidently he is suggesting that the MP will kill the antibiotics, and D levels will both return to normal once the bacteria is killed and the unregulated conversion to 1.25 is slowed ( thereby bringing up the d3 (?) or reg vit d level ) What are your thoughts? Thanks

Answer: Being trained in mathematics, I can see "his logic", unfortunately, I also realize that the human body is an extremely complex system with many many feedback cycles that are poorly understood, and which appears to be ignored in his logic.  I gladly acknowledge that there can be cases of cure of diseases by going down to 200 calories per day for 9 months, and similarly by starving the body of other essential nutrients. I view 1,25D levels as similar to Protein-C levels, indicators of the body responding to infections. There can be situations where you want to disable the body immune response, for example, for an organ transplant --- but in those cases, you also expose the body to a very high risk of other infections. I believe that heart attacks are connected to many chronic infections, hence the low D levels with high heart attack rates is in agreement. I do not believe that disabling the 1,25D immune response will work for 90+% of people, and believe that there is a significant increase of other medical conditions arising. I do not believe this approach will decrease the amount of infection in total, but actually increase it in most people "(but hide this increase through disabling the immune response and also using the anti-inflammatory, Benicar)".

 
I am also planning to get my d levels tested again ...6 months into the MP

Answer: Please also have your aldosterone levels tested every 6 months -- just for safety sake.

 
- Norman
-----
Telephone conservation: Should a Sarcoidosis Patient take Vitamin D?

Answer: I read in TM's writings that

"The prognoses of the 6 patients able to tolerate Calciferol[ed. Vitamin D2] were good, 3 radiographs cleared, three improved. But the prognosis for the third group, those intolerant to Calciferol, was grim. Two were unchanged and one worsened. From  http://clinmed.netprints.org/cgi/content/full/2002080004v1

To me, it means that a Sarcoidosis patient should try Vitamin D3 (which is better tolerated than D2) and if they can tolerate it, they should keep taking it -- because they would have a 50% chance of going into remission, and a 50% chance of getting better. None of those that could tolerate Vitamin D got worst!

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