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suecat
Member in Phase 2
| Joined: | Thu Feb 14th, 2008 |
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| Posts: | 70 |
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Posted: Wed Jul 23rd, 2008 03:36 |
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Hi Freddie,
This is sue cato username of suecat. I just want to say you are an encouragment to me. I love you byline: we are all in this together and I'm pulling for us!
God Bless you,
sue
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FMS/CFS 125D55 25D32 Ph1Apr08 cal/mag guaifensen gabapentin doxylamine NoIRs covered up low lux home
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expate
Member in Phase 2
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Posted: Sun Jul 27th, 2008 04:45 |
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Hi Dave and All,
I just want to put my toe in the water here to say, I haven't read carefully everyone's response on this thread, but I feel like I fit into this catagory. My diagnonsis is hypervitaminosis D. My doctor tested me for D and suggested the MP to me because I go in with aches and pains that don't ultimately get better, they just shift position.
If I could be assured that my level of discomfort/aches and pains would stay as now, no way I would do this. But I suspect that I am hedging some greater catastrophe, perhaps dementia, IDK.
Short on time right now, but I will watch here. I'll be back... Thanks for startint this, Dave. I remember reading your posts when I first started. You began and progressed so fast, I couldn't find you.
Oh, and I am editing this now to say that I expect that neuro issues will be my mantle to bear. My mom had issues (including undiagnosed anorexia, she died in 1969) leading to her death, as does my sister. My brother has psoriasis. But my other brother has frontotemporal dementia (kind of like early Altzheimers). Another brother has/had cluster headaches. And I... have struggled with depression, anxiety/panic attacks, self-injury (all seemingly in the past). I've been in therapy for six years, on anti-depressants for three (now on a break and doing really well), and am expecting the MP may address some of these conditions. Please note that pre-MP, I was doing the best I have psychologically, in many ways, yet still was not "there".
All that is to say that, coming from a family of clinical social workers and a family with many nuero issues, I am very interested in what my herxes will be considering I've "beat" many of my concerns through therapy and medication (and am now off all medication).
Cheers,
 dette
Last edited on Sun Jul 27th, 2008 05:15 by expate
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Dave L
Member in Phase 2
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Posted: Mon Jul 28th, 2008 13:55 |
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Hi expate (Odette?),
There seem to be a number of folks who are apparently healthy or healthy enough in the body, but are concerned on one level or another with long-term outlook for mental functions. In my case, I don't really have "hard" evidence that I am at risk, but I do have indirect indications of potential risk, and that's enough for me.
My herxing scarcely deserves the name yet: occasional fatigue (afternoon slows), sometimes the wobbles (short-lived), mild fogginess if I am crowding too much work in; muscle cramps at night. I continue to exercise, work outside and get up in the morning feeling fine.
I don't have a clear handle on what I think may be an insidious kind of herx: that is a low-level, under-the-radar erosion of poise, balance, and outlook. By definition, this may be difficult to detect in oneself, however, one can read about it throughout these fora.
Which is a roundabout way of encouraging iyou to Carry On! but cautiously. Take it easy and slow and pay attention, especially if you aren't having any obvious bodily herx symptoms.
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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expate
Member in Phase 2
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Posted: Mon Jul 28th, 2008 20:14 |
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Yes, it is Odette.
I am trying to do this textbook style, so I will be careful with my progress. I have a good MP doctor and support at home and in therapy, so I'll be fine.
I definitely have more th1 issues than you though nowhere near what some people have. It's good to have this continuum so that we may all compare notes.
Pre-MP, I was taking 2 two hour intermediate ballet classes at the university with "youngsters", going to bench aerobics and Pilates, walking to work, entertaining in the home, gardening, travelling, and generally living a full life. But it just kept getting harder and harder to muster the energy. And there were aches and pains. But in all, I was highly functional.
Some people wonder why I am taking such drastic action. If I would stay as I am for the rest of my life, no problem. But I know it will just get worse, so...
Do check in from time to time to let the rest of us know how it's going.
Cheers,
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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John McDonald
Administrator
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Posted: Mon Jul 28th, 2008 20:53 |
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Odette - as you get the hang of this and provided you don't uncover too many microbes you will find it easier to do the MP without alarming others. They hardly accept my excuses anymore if I do bother to offer them. Folks see me doing too many things that the healthy do, even though I know I have a lot of microbes still to kill.
If you do uncover a lot of microbes, well, congratulations. That's why you did this and if my experience is any guide it will pay off. And your approach to your treatment and your friends and such will adjust accordingly. But I think you are brilliant. I am substantially healed but this protocol is still being good to me, which is to say, some days it isn't. 
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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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expate
Member in Phase 2
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Posted: Mon Jul 28th, 2008 21:47 |
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Thanks for the encouragement. It helps.
As they say, slow and steady wins the race, so hang in there, John. Since I'm only on Benicar and can't read the phase 2 and 3 forums yet, is there any sense, as you almost hint at here, that certain abx's specifically affect bacteria that must especially affect the brain?
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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John McDonald
Administrator
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Posted: Mon Jul 28th, 2008 22:00 |
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| Well, yes! Some combinations do seem to be particularly effective at eliciting herxes in the mind, as it were. That is what I am primarily after now though I had to really begin pacing myself when that lot hit. A funny thing, messing with the mind. but I've already got some benefit.
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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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expate
Member in Phase 2
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Posted: Mon Jul 28th, 2008 22:09 |
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The mind is a funny thing. I confronted that when my brother developed frontotemporal dementia. It's him and not him there now. I got all into, how much of who he is is chemical, biological, etc. Behavioral tendencies he had that are now clearly part of the disease. It just all got too heady (pun intended) to think about, so I kind of shut it down and just deal with it.
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Joyful
Member in Phase 3
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 600 |
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Posted: Tue Jul 29th, 2008 00:25 |
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dette wrote:
is there any sense, as you almost hint at here, that certain abx's specifically affect bacteria that must especially affect the brain?
Hi Odette... take care to not have too strong of expectations that one particular antibiotic will "work on" a particular area of the body... I have found that it's very individual.
In my case the one that is supposed to have the strongest neurological impact seems to be the best at modulating immune function for me. In fact, the minocycline (especially combined with one of the other antibiotics) is the one I get the most distressing neurological IPs from. 
It is beyond my puny human capacities to predict what my body will decide to do with whatever chemicals, food (enzymes, proteins), etc. I put in my mouth each day. 
It is probably best to plan for the worst and hope for something a little more tolerable. 
Last edited on Tue Jul 29th, 2008 01:03 by Joyful
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Lyme?1980 Babs?05 Bart?05 CFS?06 | 125D50 Ph1Jul07 Ph2Feb08 Ph3Aug08 | NoIRs cover up but rarely leave low lux home | 25D15 Oct08 | ABC of MP
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expate
Member in Phase 2
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Posted: Tue Jul 29th, 2008 00:39 |
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Roger Wilco. The suspense is killing me.
But seriously, I will wait until my husband is back in town before embarking on Minocyline.
Best of health to all,
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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jrfoutin
Advocate
| Joined: | Tue Aug 9th, 2005 |
| Location: | Orem, Utah USA |
| Posts: | 3846 |
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Posted: Tue Jul 29th, 2008 18:11 |
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Dave,
I agree with John way up there above in the posts on this thread. When your 25D arrives at therapeutic ideal, and/or you are using ph3 meds, then you might get more of a bump in the road than you have right now. I'm also convinced some immunopathology occurs when we aren't noticing it much either:
"the slows in the afternoon and sometimes really profound fatigue"
In the mean time, thank you for trodding prevention ground and for making the MP a partnership activity with your spouse. You deserve kudos.
Best to you--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Dave L
Member in Phase 2
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Posted: Fri Nov 7th, 2008 16:34 |
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Howdy friends.
Haven't checked in for several months (keeping up with main site postings, though). I've been on maximum Phase 2 (modified) dosing for a month and a half now, and other than sometimes windy(!) and muscle cramps, haven't experienced much that I can definitely attribute to MP herxing. No light sensitivity, my afternoon fatigue seems to have gone, and I am more productive than I was in the early summer. Honestly don't know if this is biochemical or a reflection on life's externalities. I'll get blood tests soon to see how my 25-D is doing.
If at the end of Phase 3 I check out clean (by whatever blood markers that apply) and if I continue to have an easy road, then it may speak well for the MP as a prophylactic.
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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John McDonald
Administrator
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Posted: Fri Nov 7th, 2008 18:03 |
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Dave - I recall that when my 25D passed through and below about 12ng/ml that my herxing became considerably more vigorous. I have seen folk need to reduce their antibiotics at that point. So in your shoes I would be hopeful based on current evidence that I have a low microbial load and could possibly challenge or race through phase-3 but I wouldn't bet on it until I see the upcoming D results as yours was quite high at the last test. This is a bit different than I opined in my recent email to you. Hoping too that the winds will still lest you have a marital herx .
-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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expate
Member in Phase 2
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Posted: Sat Nov 8th, 2008 03:44 |
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Dave,
Thanks for posting, as I too am on the MP somewhat prophylactically (though a tad worse off than you).
I am curious to know why you are on modified phase II. From what I've read, you would need to go through regular phase II before progressing to phase III.
Also, I am in something of the same situation as you, in that I am not very symptomatic yet have D levels that are quite elevated. I am anxiously awaiting my latest D test results but expect they may have only lowered by a minimal amount.
So, I'm curious to see how this plays out. Will my D levels take longer to decrease than an "acutely" infected chronic patient? It's feeling that way. Is there some reason for that, if true? Will IP and sub-clinical status rear ugly head when D levels retreat to theraputic ranges? Probably not. But then, how to explain our low IP, yet progress, yet slowness to decrease D?
I am definitely experiencing true and substantial benefit from the MP so far. Still, the experience of those more profoundly ill is in another realm for me (at this point).
It's all very curious. I am glad to have started phase II. Looking forward to discovery.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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John McDonald
Administrator
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Posted: Sat Nov 8th, 2008 04:06 |
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Odette - thanks for pointing out that Dave is on modified phase 2.
David - I never tried modified phase-2, I did the regular phase-2. But regular phase 2 is said to be tougher than modified-2. I believe it. The long lived antibiotic is potent.
I guess both of you know that having high 25D can suppress herxing. If you are seeing benefit from the MP and your 25D is high then it seems reasonable that you will face herxing down the road when your D drops. You may find it desirable to back off some dosage at that time.
Odette, the ratio of 25D to 1,25D when measured is something like 1000 to 1 and the 25D is very long lived, from a month and a half (half life) to several months. The 1,25D is quite short lived, just a 6 hour half-life. If a patient is really sick then the disease seems to rapidly convert 25D to 1,25D and that short half life for the active metabolite means they can go through a lot of the 25D quickly. But if you aren't so sick then the microbes or body may not convert the 25D to 1,25D so quickly. It is had to say how you will respond. Carol's D stayed high for a long, long time. Others see theirs drop quickly.
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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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expate
Member in Phase 2
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Posted: Sat Nov 8th, 2008 16:17 |
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John, thanks for the explanation about conversion of 25 D to 1,25 D. That makes sense as a possible reason for the slow decline of 25 D in "healthier" people. Frustrating though.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Dave L
Member in Phase 2
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Posted: Sun Nov 9th, 2008 06:25 |
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Odette,
Dr. Blaney put me on the mod Phase 2 because my personal bugbear is a dread of Alzhiemers. My Dad went down with it. Blaney felt that it targeted the bugs in the neurological system more than other abx - therefore I might as well go right at 'em. I presume (guessing really) that he will get me on phase 2 when I am due for changes in a couple of months. But I haven't asked him. Should, I guess.
John: I, too will be interested to see how my 25D is holding up. I hope I can get the tests this coming week. My hope is that it will be gratifyingly low.
bests,
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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expate
Member in Phase 2
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Posted: Sun Nov 9th, 2008 15:52 |
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Interesting, Dave. Your comments sent me to read about Mod Phase II and I see what you mean.
While I have experienced significant physical benefit from being on the MP so far (horrid hot flashes resolved, numbness in hands resolved, shoulder weakness/pain much better, increased bladder capacity), my big challenge and bug-a-boo is neurological issues too.
My mother suffered from severe psychological problems, my brother has frontotemporal dementia (analogous to Alzheimer's but affecting different parts of the brain), and my daughter developed seizures in adolescence.
So, yes, I am doing the MP for me (I got off my anti-depressent after 3 months of decreasing dietary D and light exposure, started MP meds 1 month later, have been off of Wellbutrin for 5 months now, and feel FINE!!! ), but I too have the fear of those prions on the brain. Also, I hope to learn enough to help my daughter.
So, I'm looking forward to Phase III, when I will get to add that particular abx that targets neuro-symptoms.
Cheers,
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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hope4all
Member in Phase 2
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Posted: Tue Nov 11th, 2008 21:56 |
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Hi Dave, thanks for starting an informative thread, you said in an earlier post
"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)."
I think this has been fairly well documented at least in relation to GWI (GulfWarIllness) being identified with a mycoplasma infection, and the subsequent infection of spouses and children coming down with CFS like and ADD/ADHD like symptoms. Check out dr. Garth Nicholson at http://www.immed.org or a video of his if you are interested.
http://video.google.com/videoplay?docid=3377807002825883504&hl=en
Dr. Nicholson is not an MP supporter, but he has stated that since he is in a research situation, he will start looking into MP if they get the funding for trials. I think his Doxocycline protocol is way inferior to the MP.
Please, I hope that none will be scared by the thought that the CWD/L-form bacteria can jump in family situations. Remember these bugs are slow. You have time to consider and do your own research and be sure of what is right to do.
I clap my hands and rejoice for the families in this thread who do simultaneous MP.
Good luck.
Th:o)mmes
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CFS 15+ years, relapse dec 2005, Initial 25D=19, 1,25D=115 now 25D<5ng/l ... mod ph.2. 25mg mino 48h 20mgClinda 48h Benicar 40mg 8h
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Dr Trevor Marshall
Research Team
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Posted: Wed Nov 12th, 2008 16:15 |
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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).
It really is very important that every MP member reads the key FAQs and refers to them frequently.
They are currently at:
http://www.marshallprotocol.com/forum2/
http://www.marshallprotocol.com/forum32/
Barb's thread titled "The ABC of the MP" is an index which to the FAQ
http://www.marshallprotocol.com/forum32/2135.html
It contains quite a lot of helpful links on the Family, in particular
Will re-infection occur if my partner or family members are not treated?
Am I contagious?
Some of my family members appear to have Th1 inflammatory symptoms.
What should they do?
Can reinfection occur once we are healed?
Should couples do the MP at the same time?
We are very short-staffed here, as the demand for help way outstrips our ability to provide it. It is important for everybody to know what resources are available to them at the study site.
Garth is a great guy, and a valued colleague, but he is not in any position to gather data like we are. We have many family groups tested for D metabolites, and the familial spread is indisputable.
Last edited on Wed Nov 12th, 2008 16:21 by Dr Trevor Marshall
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