27 Apr 2018
Author
Jim K
Title

Some D-liteful questions?

Body

This is a set of comments moved from Karen's blog to their own place. Note the forum topic "theoretical speculations."

Comments

This is still all very confusing.

I went to my Lyme Dr. yesterday and he has started to measure all of his patients (MS, Lyme, CFIDS, RA) and he has found that the majority with a low 25,D have a HIGH 1,25D and he is beginning to believe Marshall's hypothesis.

If the bugs are converting D to 1,25 D and those levels become too high the entire endocrine and thyroid systems go completely out of whack as 1,25 D effects these systems.

The patients he treats with more 25 D have only been increasing their 1,25 D levels and this is not good. He was/is a big advocate of D supplementation, but now is questioning that.

Whether treating the bugs will correct this dysregulation on it's own is still up in the air in his opinion, but he is cautious about recommending D until both levels have been measured.

I think more research in this area desperately needs to be done as all of these new Cancer/MS studies do not take this into consideration and they do not measure both metabolites.

If Benicar were "palliative" the Marshall Protocol patients would not be suffering so much with endless herxing. Also some of their MS patients would not be getting well.

I am not for the MP, but I also think everyone should have both D levels tested before they begin D supplementation.

Best,

Chris

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Zith 500 mg Tues, Thurs/Doxy 200mg MWF. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

Chris, Marshall's doctors have a very small number of MS patients and probably any improving are relapsing remitting.  The Munger paper says it all, really: women who are taking D supplements are far less likely to develop MS  Now, people with MS tend to show low levels of D, I supplement at 4000 iu a day in addition to the clinical levels of abx and I have vastly improved, yet judging by my neurologist's opinion, I should be dead by now.......Sarah  An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 Chris- Dr. Powell checks both 25,D 1,25 D levels before supplementing with D, and finds the vast majority of CFS/FM patients low-- then he supplements. Those who have high levels of D he watches and retests periodically as these things change. So if you are concerned, by all means get your levels checked.

It is confusing, and odd that one doc finds high levels and another low levels. I would add, that the whole issue of bugs convertinG D to 1,25 D is hypothetical. The 'evidence' I've seen (and I haven't seen it all I'm sure) is quite inferential.

"Endless herxing?" I thought the whole point of MP was to avoid endless herxing. Benicar does lessen inflammatory part of herx, I've used it myself for that purpose early in the CAP. If MP patients are "endlessly herxing" wouldn't that suggest that the dosages of abx are too small to get past the worst of the herx (ie bring down bacterial load sufficiently)? Okay, not intending to get into a discussion of MP here, just suggesting you think it through. No further MP comments. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyl daily (Continuous protocol)

Chuck, read this, and remember that Marshall isn't a doctor.  He works by hypothesis, not by treating people:http://www.hsph.harvard.edu/news/press-releases/2006-releases/press12192006.html........SarahAn Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

It really is sad that these Doctors cannot contact each other and get to the bottom of this issue.

I have had my 25D and 1,25 D levels checked. D was normal, 1,25D was very high. I have had them tested multiple times and the dysregulation is always the same.

It is important to note that Dr. Marshall is the only Scientist studying the way these bugs effect our bodies on a genomic level. I can think of no one else who has done this much research day in and day out. In order to really make any comments about his protocol you have to do the research and watch the DVD's and source his references and studies. It seems that no one here has done that.

As I said, I don't think he has all the answers, but he is certainly working towards finding them. Too bad Dr. Stratton, Wheldon, Marshall and Powell can't all have a sit down or a conference call and share some information and the science behind their findings. This would certainly help all of us who are suffering with these diseases.

Perhaps this is why I am stirring up the pot here.

Best,

Chris

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Zith 500 mg Tues, Thurs/Doxy 200mg MWF. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

Jim,

Benicar potentiates the dose of abx. All of the patients on the MP have done high doses of Doxy, Zith, flagyl etc..and herxed early on but then reached a stage were they weren't getting any better or were relapsing when they discontinued the abx.

On the MP they herx on the smallest doses of mino, zith etc..doses that would do nothing to them before, indictating that the Benicar is reducing the inflammatory barrier and getting to the bugs. Getting past the inflammatory barrier has been a real problem on high dose therapy and all Lyme, CFS Dr's are aware of this. I have spoken with several Dr's who have hundreds of patients on the MP and they are seeing real progress where none was seen before with high doses. I have been following their progress for the last 2 yrs and they are still improving.

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Zith 500 mg Tues, Thurs/Doxy 200mg MWF. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

Chris, Drs. Stratton and Wheldon are in contact
all the time and write papers together which they get published in the
mainstream medical journals.  They don't have to rely on open-access
publications, where if you pay you have to be very illiterate not to get
published.  Dr. Stratton is also in
contact with Dr. Powell.  Trevor Marshall is not a medical doctor, but an
engineer.  I got better by using the Vanderbilt protocol, adjusted slightly
because of the fact that roxithromycin is available here but not in the US and
by taking large amounts of vitamin D. I have never relapsed, just improved, even now when I am not taking anything but some supplements.
 
This is KC's blog.  She is also doing well
on the Vanderbilt protocol. I know because I have a record of her progress since she first tried to start.......Sarah
 
An Itinerary in Light and
Shadow
Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sorry KC, but I pinched this from Lymenet:   "I notice on Marshall Protocol today that Trevor Marshall wrote:

"you will understand that my peer-reviewed publications lend my opinion a certain credibility, and international reputation"

Attempt at humor

* So he has gotten a bunch of PhD's in Electrical Engineering to review his work?

* Or, did he post it on a board of people with the same illness (and thus obtained review from his peers)? Gee whiz, all of us have peer-reviewed literature now!

* I recall that someone pointed out that he owns the "journal" where his stuff is published. Any critical comment on it would not be published.

So my opinion about the research is that it is likely far less worth than reading CFS-L; and there is such an appearance of a lack of any intregity in Trevor Marshall that any research claim should be validated independently before being acted upon."

Link here

The whole page is worth a read.......Sarah

  An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS. Intermittent therapy after one year. 2006 still take this, now two weeks every three months. EDSS was about 7, now 2. United Kingdom.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Chris you seem to be very reluctant to get started on an antibiotic protocol to treat your illness, I read your thread on the MP site where you said that you had stopped the doxy and zith and were about to start the MP.  Then the thread disappeared, did you change your mind?

It seems like you have spent a long time reading about these treatments and really that is what any of us needs to do .....BUT once you decide to try a particular protocol then you really should stick with doing it properly because that is the only way to find out if it is going to work for you. Switching backwards and forwards will not get you well.

You've asked the same questions here as on the other site but all the time your bacterial load has been increasing and by now whichever protocol you decide on is probably going to be more difficult for you than it would have been 2 years ago.    Time to bite the bullet Chris, get started on the tini and good luck.

(apologies to Karen and I'm sorry for what you've been through, you are a very brave girl but keep going and you'll get where you want to be)

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

D W

I'll tell you why I recommend Vitamin D supplementation in people with MS; it is because there is a large weight of evidence that Vitamin D deficiency is common in winters in temperate areas, and that this deficiency raises the risk and progression of MS. Here are three representative references (there are many more):

In early MS the number of Gadolinium enhancing lesions increases as 25(OH) Vitamin D levels fall. [Embry AF, Snowdon LR, Vieth R. Vitamin D and seasonal fluctuations of gadolinium-enhancing magnetic resonance imaging lesions in multiple sclerosis. Ann Neurol. 2000 Aug;48(2):271-2]

As disability in MS increases 25(OH) Vitamin D levels diminish. [van der Mei IA, Ponsonby AL, Dwyer T, Blizzard L, Taylor BV, Kilpatrick T, Butzkueven H, McMichael AJ. Vitamin D levels in people with multiple sclerosis and community controls in Tasmania, Australia. J Neurol. 2007 Apr 11; Epub ahead of print]

Vitamin D lowers the risk of MS [Munger KL, Levin LI, Hollis BW, Howard NS, Ascherio A. Serum 25-hydroxyvitamin D levels and risk of multiple sclerosis. JAMA. 2006 Dec 20;296(23):2832-8.]

Three papers published in sound journals. They are eminently simple to understand. It's a mistake to think of this kind of science as necessarily complex; it's a matter of simple observation. It is answering the question What is the situation? Looking at the above references one can ask the simplest of questions. What happens to the vessels inside the brain in early MS in the face of Vitamin D deficiency? Answer: the blood-brain barrier becomes fragile, and blood vessels become leaky. What happens if a young woman takes a dietary supplement of Vitamin D? Answer: she has less risk of developing MS. And, looking at the chronological history of MS, she might well have had the silent beginning of the disease before she started supplementation.

Easy, isn't it? Erm, well, yes, it is, until you start to ask the why questions. This terrain is fraught with hypotheses, some more credible than others. The why questions are interesting to muse upon, over a pipe of tobacco, in the back bar, bearing in mind that there is no general agreement on any of these subjects. Although they may be helpful in the future the inconclusive answers to why questions are no way to provide a theoretical basis for present treatment. In medicine many why questions remain unanswered or incorrectly answered. To those in other fields this often seems unsatisfactory: but is better to admit ignorance than fabricate an illusory answer from a group of unknowns. Our present-day understanding of cell-signalling (even in health) has all the rich fanciful intricacy of a mediaeval bestiary. One thing I do suspect though is that herpesviruses have a secondary input into MS, rousing from dormancy as C pneumoniae attacks the immune system (link). One thing that is positively known about 1,25(OH) Vitamin D is that it actively induces the production of cathelicidins which are vigorously antiviral. On these grounds alone it would seem unwise to curtail Vitamin D intake.

Fortunately in this case the why questions are unnecessary. The above studies show that adequate Vitamin D levels help prevent the development and the worsening of MS. It makes plain sense to see to it that they are maintained.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment. Normotensive.]

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

My post was not intended to upset people who are already struggling to get well.

Last November I was looking forward to beginning CAP but in the next few months when I learned of Dr. Powell taking many patients off of CAP and supplementing with high doses of D I began to question the treatment.

If his CFIDS/Fibro patients were getting well with CAP why abandon treatment? I think many other patients were also worried.

This is the only reason I began to look more into Vit D supplementation and two such opposing treatments (Marshall and Stratton).

I recently had to take a break from CAP because of Cardiac issues and several trips to the ER.

After several tests my Dr. believes I may have Babesia in addition to Cpn as I have drenching night sweats, heart irregularities, chills and neuro symptoms which came on in full force after 5 months of Zith and the addition of Doxy. Lyme has been long suspected but I have only had equivocal tests thus far and I seem to fit more into the CFIDS camp with my HHV-6, CMV, EBV, Mycoplasma co-infections.

I also recently finished Diflucan and will continue on Nystatin for a yeast problem.

If my Babesia tests are positive or if I respond (herx) to a therapeutic probe with Babs meds I will have to do that treatment before I go back to CAP.

Best in health to all of you.

Chris

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Zith 500 mg Tues, Thurs/Doxy 200mg MWF. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.