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Dave L
Member in Phase 2
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Posted: Wed Jul 2nd, 2008 00:44 |
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Hello all:
I appear to be a distinct minority in the MP community - I am interested in finding out if I am in a minority of 2 or not. I (and one other member) am taking the MP as a prophylactic - I have no symptoms I am aware of, but my blood tests showed such high levels of 1,25D that the presence of a Th1 inflammation could be assumed. Even though I didn't exhibit anything. I took the blood test because my wife is on the MP and one parent has arthritis and the other had Alzhiemers. From the literature I suspected that I might have a load of CWD too.
My thinking on taking MP as a prophylactic was based on reading the stories of so many members, reading Amy Proal's Bacteriality site, and the advice of Drs. Marshall and Blaney. I came to understand myself as a ticking time bomb with a fuse of unknown length.
To cut to the chase, I've been getting such an easy ride that I am not sure it is even right to refer to anything I've encountered as "herxing". I'm in Phase 2 now, and of course Benicar x 6 hrs. I get the slows in the afternoon and sometimes really profound fatigue and elevated heartrate if I am doing something aerobic, but even then not all the time. But by and large, this is small stuff compared to what others experience.
So are there others out there like me? If so, how is it going? I would also be interested to learn if spouses of MP'ers are more likely to be carrying a load of CWD too.
cheers,
Dave
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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John McDonald
Administrator
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Posted: Wed Jul 2nd, 2008 00:56 |
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Dave - I started MP from what I thought was pretty credible remission from RA. This was after using only antibiotics for a year per the earlier Road Back protocol. But unlike you I got quite a lot of vigorous herxing immediately.
On the other hand I had been avoiding dietary D for over a year as a nod to the MP. I thought I might start it the MP some day. So at the start my immunosuppressive D25 load was already lower than yours in your signature. And my herxing became noticeably more vigorous just about the time my 25D must have passed through 12 ng/ml based on blood tests before and after. That 12ng herx boost is a prediction of TMs and it seems to be about right for many of us. Maybe you don't have a CWD load but you might not find out until your 25D drops quite a bit more. The half life for 25D is quite long, a couple of months or so. So it may be a bit longer before you find out if there is a herx in there. In your shoes I would be hopeful and optimistic but I wouldn't judge myself out of danger yet.
-john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Dave L
Member in Phase 2
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Posted: Wed Jul 2nd, 2008 01:10 |
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Good advice, John.
I got my blood tested again last week and I am awaiting the results of my 25D. I've been pretty darn good about eliminating dietary D (this from an egg, mushroom, and fish addict) but I am outside a fair amount due to my work. Been wearing NoIRs and a hat and staying clothed (another reluctant concession), but I have no light sensitivity, at least not yet. I hope this will not keep my 25D up unduly. Dr. Blaney suggested that people may vary quite a bit in whether or not they need to stay out of the light and that sensitivity may be as good a criterion as any.
cheers
Dave
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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Deb Grabetz
Advocate
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Posted: Wed Jul 2nd, 2008 14:22 |
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There should be more like YOU Dave!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Dave L
Member in Phase 2
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Posted: Wed Jul 2nd, 2008 15:48 |
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Deb,
for most folks, the MP is the treatment of last resort; many appear to come to it as conventional approaches dead-end.
If the science behind it is as solid as I read it to be, then it has tremendous potential as a prophylactic, to prevent the calamities that tend to crop up in one's later years (so-called "diseases of aging").
The problem is, of course, is that you can't establish a firm causal link between a prophylactic and what doesn't happen. Thus, if I sail merrily through my dotage disease-free and vigorous, I will not be able to conclusively credit the MP (especially to the skeptic). But it will be clear enough for me, and maybe for others who might benefit.
So my entry to the MP family is frankly an experiment driven by the logic of having accepted premises laid out by Trevor and others, and stimulated by blood tests that (if MP theory is correct) predict future calamity for me - but does not guarantee it. Nor is there a guarantee that I will avoid a health calamity by taking the MP. Interestingly (well, to me, at least), I constructed a "decision tree" analysis of the situation as I best understood it, and the weighted likely outcomes of taking the MP or not made my choice a no-brainer. My payoff ( and indirect proof) will hopefully emerge in years to come if I fail to get something awful.
best regards to all! Dave
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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John McDonald
Administrator
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Posted: Wed Jul 2nd, 2008 17:30 |
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| Dave - I predict that as your 25D falls and as you progress through the MP phases that you will indeed experience some startling herxing. I began the MP to hopefully cure my rheumatoid arthritis but the last year and a half has been all about curing incipient dementia. No one was questioning my mental acuity or emotions before I started the MP but that is where the bulk of my herxing by far is now, and that didn't start in earnest until phase-3. I should add that even though my neuro herxing is improving I haven't noticed giant payoffs yet. My few cognitive improvements on the MP have been subtle so far. So at least insofar as cognition goes I am just a yard in front of you for prophylatic MP.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 368 |
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Posted: Wed Jul 2nd, 2008 20:11 |
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Hey, Dave. All five of my family is doing the MP on the same schedule. It's fascinating to see the similarities of IPs between the three of us who are most ill. My husband, Martin, and oldest daughter, Genevieve, have had quite an easy run of it. Martin has been more tired when he added the phase 2 antibiotic and occassionally more cranky, but that's the worst of it for him. And Gen? So far...nothing remarkable has gone on with her. We pester her to see if she's just taking things in stride, but she claims that she doesn't notice any difference in her body now from pre-MP. That boggles my mind.
As John says with his journey, I'm expecting that as we move along, things will become more bumpy. But it's good that not everyone walks straight into High Drama, eh? We made the decision that even the 'well' family members would do the MP out of wisdom just like you. So you can add two to your numbers count, okay?
[moderator edited to remove antibiotic name]
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Dave L
Member in Phase 2
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Posted: Thu Jul 3rd, 2008 19:01 |
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Hallo John, Hallo Juanita!
Two very interesting posts. John, you put your finger directly on my private bug-bear: dread of dementia. My father had Alzheimers and I would not go that way if I had anything to say about it. I have some reservations about my memory - nothing off the chart or debilitating, but a little disquieting. I suspect that some of my emotional reactions to events in my recent life may be different from what I think is characteristic of me. These considerations - along with the blood tests - impelled me to consider MP as a preventative. I hope for a good ride, as one of Juanita's children seems to be getting, but I am prepared for some rude shocks as my 25D comes down. If I understand things right, Dr. Blaney has me on XXXX for Phase 2 instead of XXXX because this antibiotic addresses neurological bugs more directly, and thats on my personal agenda.
Juanita, did all your family check out as having high 1,25D results? Thanks for adding to my collection - are they documenting thier progress on the MP site?
cheers, Dave
Edited to remove phase 2 & 3 antibiotics
Last edited on Thu Jul 3rd, 2008 19:14 by
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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John McDonald
Administrator
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Posted: Thu Jul 3rd, 2008 19:28 |
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Dave,
My neuro party started with the first day of phase-3. The last half of phase-2 was pretty much sailing for me, but at wee tiny dust mote doses of the phase-3 abx I had all kinds of cognitive, mood and emotional herxing. I noticed several types of cognitive herxes that would each easily be diagnosible as attention deficit disorder. I also spent a lot of time telling myself that the world as I perceived it just wasn't real. My father also died of Alzheimers at too young an age and it wasn't pretty.
I don't recall so much neuro stuff on phase-2 except for the sluggishness that comes with fatigue and occasional episodes of vocabulary loss. I had a few rage episodes that accompanied too much sun exposure. But on phase-2 I had a significant neuro gain. I used to be about the fastest guy in the conference room. One or two of us would be having our own conference while everyone else was trying to catch up. Over the years my cognition slowed and slowed and I figured, well, it is a young person's game. But one day about 6 months into phase-2 I had that wonderful familiar feeling of fast processing again. Then again a few days later. Eventually these episodes came more frequently and merged, except for the high holy herx days. I pretty much have my youthful fast processing back. It's odd, because in my phase-3 herxes, especially the ADD, I was still processing quickly, but processing wrong.
I have been on phase-3 since September 2006. It hit me so hard that I had to really reduce the abx to control the herx, else by now I might be unemployed and perhaps even single. I know I am better because I can tolerate a lot more antibiotic now, but I still have to carefully ration the dose. I've been wanting to increase it for months but when I experiment with the increase I don't much like the herx. So I am poking along with a just tolerable herx. The one thing that I have definitely gained is calm. Since my early 20's I used to periodically fly into a passionate rage at some imagined or real insult. I used to hate that part of me and wondered what sort of flawed Hitler character I was. But I haven't responded that way to even deliberate slights for many months now. So I think I may be able to keep this neuro improvement. But I still can't play classical piano or leap over tall buildings.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 368 |
| Status: |
Offline
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Posted: Thu Jul 3rd, 2008 20:43 |
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John McDonald wrote: But I still can't play classical piano or leap over tall buildings. Drat, John!! So the MP has limitations. Grrr....
I love hearing how you play with your pace and meds doses. I really appreciate how clearly you express yourself and what you've shared elsewhere that I've read. You're a good soul, eh?
I forget our D scores on intake, Dave, but we're all reporting regularly so it's there somewhere in the postings if you're need the info. What interested us was that Martin's numbers were the highest of all of us and he was the least symptomatic! He had (has the allergies again at the moment) ragweed allergies, one swollen knuckle with occassional pain, and the beginning of his mother's non-Parkinsons' tremour. The tremour worried him as he works ambulance and one needs a steady hand to insert IVs on a bumpy road. But he also comes from two sides of family with extreme heart conditions, diabetes and degenerative joints, and he really didn't want to walk in those shoes.
He was also concerned that if only I took the treatment and he waited to start the MP until after his health turned sour, he would still be passing along his soup of bacteria back to me. So not only did Dr Marshall's science make sense to him as a well person, he wanted to increase the positiveness of my journey towards wellness. No problem whilst I am on the treatment, but we didn't understand enough about life after the MP to trust what his bacteria could do.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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natalie17
Advocate
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Posted: Mon Jul 7th, 2008 06:45 |
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Dave - just wanted to thank you for starting this thread. My symptom-less partner will be having his D-metabolites tested soon and if they indicate Th1 he will be following in your footsteps. We both found thsi thread very interesting. Thanks
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CFS/ME from June05| Ph1-July07| Ph2-Feb08 | Natalie's Story | ABCofMP
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Dave L
Member in Phase 2
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Posted: Mon Jul 7th, 2008 16:34 |
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Hi Natalie - I've been learning lots too from practically everyone. The question of transmission of CWD between partners in a marriage or a relationship - and between parents and children and siblings has not been studied (unless I am missing something). Although there is a bell curve established for 25D and 1,25D in the general (Danish, I believe) population, it would be interesting to know how or if the high values cluster.
Also, people who have no actual symptoms face an oddly different challenge in deciding to accept and commit to the MP than do people who are really sick: we have (or at least we think we have) viable options, since to do nothing has no immediate costs. I agree with something John MacDonald wrote on a different thread, that as we are not microbiologists, we inform ourselves as best we can, but ultimaltely we make a choice to believe just as we believe the unknown engineers that designed the bridge we drive over daily.
Now that I am on the MP I have finally wandered into some of the anti-MP websites... interesting how the Vit D debate seems to be as much dogma and faith and partisanship as it is science.
best regards
Dave
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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Deb Grabetz
Advocate
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Posted: Mon Jul 7th, 2008 16:43 |
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John McDonald wrote: But I still can't play classical piano or leap over tall buildings.
John,
Funny that you should mention classical piano! Check out my post under Quote for the Day...dated today! Beethoven was misdiagnosed in his lifetime and it is now believed he was a victim of Sarcoid (Th1)!
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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John McDonald
Administrator
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Posted: Mon Jul 7th, 2008 16:57 |
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...but ultimaltely we make a choice to believe just as we believe the unknown engineers that designed the bridge we drive over daily .
It is stunning just how much faith and unquestioned or unquestionable assumptions we need to carry on our daily lives. Who has time or interest to consider everything? And I can measure my own insecurity about my choices by how passionately I desire to convert someone else to it. I suspect that I really want to test my choice by using some unfortunate person as my foil. I realized this about myself many years ago and have since been a much less rabid evangelizer about my choices, but I detect the urge nonetheless and it is a handy measure of my insecurity. Anyone want to be a youth soccer referee?
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Dave L
Member in Phase 2
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Posted: Mon Jul 7th, 2008 16:59 |
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John,
Your post of July 3rd. gave me lots of food for thought. Being "symptom-free" (sort of, maybe, depending how one defines this), my cognitive health is probably my chief concern. The fact is that I don't really have any baseline information to judge if my concerns are well founded, but because of my late father's Alzhiemer's, there they are.
Like many guys in their 50's, my faculties don't feel quite as sharp or quick as they did, and I certainly don't have the same drive to do things promptly and quickly. My "aha!" moments come less frequently; so I hope for a general sharpening as I progress through this. (I am still waiting for my second 25D results.)
Implicit in your posting is the assumption that neuro herxing indicates CWD in the brain. Is this so, or is assumed? I've been wondering, watching my wife's herxes, if the discomforts can migrate to a site in the body having originated from CWD killed elsewhere?
In any case, your comments suggest that I should be prepared for some surprises in the months to come!
thanks for all the inspiration and perspectives that you have been contributing to the MP community.
best regards
Dave
And your recent post regarding evangelizing the MP (or anything) - how right you are! If you have something that might help someone (especially a friend) it is so natural to want to share it. But un-asked for advice can get a doubtful reception....
Last edited on Mon Jul 7th, 2008 17:04 by Dave L
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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John McDonald
Administrator
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Posted: Mon Jul 7th, 2008 17:32 |
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And your recent post regarding evangelizing the MP (or anything) - how right you are! If you have something that might help someone (especially a friend) it is so natural to want to share it. But un-asked for advice can get a doubtful reception....
David - Exactly that. There are some friends that I love that I wish would try the MP. In my immediate family I can use all those cool coercive tools that we use on one another but for friends whom I would like to remain my friends it is a different story. I know they are very aware of my path as I wear the silly clothes and NOIRs and hopefully they have witnessed my astounding improvement. Mostly though, I find that people have to be miserable to inquire about it. I have directly coached maybe a dozen people from the internet start the MP; people who became motivated on their own to do so. I am not aware of any casual personal contacts that have developed to AP or MP. That's alright. We all have our lives to live.
john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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natalie17
Advocate
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Posted: Tue Jul 8th, 2008 04:15 |
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Hi Dave,
On Meg Mangin's 2008DMM Karolinska poster handout, on the bottom left-hand corner of the first page it says, under Acquisition - "Intimate contact, Bodily Fluids". It also says "At conception and during fetal dedvelopment".
See the hand out here.
Also, in case you haven't seen them;
Will re-infection occur if my partner or family members are not treated?
Can reinfection occur once we are healed?
If there is a chance he gave it to me, I gave it to him or we could pass it between eachother or onto future children - any chance, then it's worth doing in both our eyes. Besides, no harm in a blood test to check... and hopefully they come back normal.
As for wanting to help others.. I have so many CFS friends who just will not consider it. I don't want to watch them get so ill they are desperate for anything that will help (as I was) and then consider the MP. But as John said, I'd like them to remain friends..
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CFS/ME from June05| Ph1-July07| Ph2-Feb08 | Natalie's Story | ABCofMP
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Phil Schoner
Member
| Joined: | Wed Jan 25th, 2006 |
| Location: | |
| Posts: | 18 |
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Offline
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Posted: Tue Jul 22nd, 2008 05:24 |
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I am curious as to how all you folks are getting the MP meds prescribed for you. I would like to start the MP prophylactically, but can find no doctor willing to do it for someone who is symptomless.
My wife has been on the MP for 4 years, and seeing how much she has and continues to suffer has convinced me that the best way to address these Th1 diseases is to nip them in the bud. Problem is, even my wife's doc won't cooperate.
My D ratio is about 50/25 and has been for several years.
Phil
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Phil Schoner, MP Support Spouse, no symptoms, 125D 74 5/08, 25D 16 12/08, ph1 11/08, ph2 12/08,
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Dave L
Member in Phase 2
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Posted: Wed Jul 23rd, 2008 01:31 |
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Phil,
I am seeing Dr. Greg Blaney in Vancouver. Maybe look at the list of MP physicians and find one nearest you, although they don't actually have to be that close by. Most of my needs are handled by phone, fax, and email.
good luck
Dave
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Dave Loeks: High 1,25-D (54.2 pg/ml) 25D - 30.4 ng/ml no apparent symptoms, otherwise fit, healthy. Reduced Vit. D intake, moderate reduction in light exposure (outside work). Started Benicar 9 April, 2008; Benicar and Mino 23 April, 2008.
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Freddie Ash
Member in Phase 3
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Posted: Wed Jul 23rd, 2008 01:48 |
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HI PHIL
This is Fred in WV. Have you looked or tried to find an ALTERNATIVE MEDICINE DOCTOR??? This is what I had to do after my family doctor refused to Rx my Benicar at the dose I needed, even though he let me start the MP and he let me have the MP for about a year. My MP doctor is one that pushes vit-D too, but he is watching me and he knows I am doing great. I told him not too long ago that for a man of my age(will be 69 Sept 1) and all the things I have had done to my body I though I was doing great. He said he agreed.
Remember, we are all in this together and I am pullin for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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