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LR's progress

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LR
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Posted: Fri Oct 3rd, 2008 16:13

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Dear Moderators,

Mod Ph II: Olmesartan q 6; Modified phase 2
Thank-you for letting me know you have a forum for those on MP independently.

Just a quick check in: I am finished Phase I and nearly finished modified Phase II. Will increase to full Mino 100 mg every second day at the end of this week. Then, assuming all continues to go smoothly, will increase in a week or two to the full Phase II.

Began Phase I in June 08.

Have had some immunopathology, but nothing too severe to manage.

LR
Admin edited to remove meds. Thanks.

____________________
MP:modPh2-Jun708| DXs Environmental sensitivities, chronic fatigue, celiac, osteoporosis, calcified low thyroid, uterine fibroid, extreme low magnesium/B-12 etc. Jan07 D:20.8; 1,25D:75; May 2007 D(39=15.6); 1,25 D(127=52.9); Jun2708 D:10.88

LR
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Posted: Mon Jun 1st, 2009 21:55

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Currently over half way through full Phase II, and going smoothly.

Barney
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Posted: Tue Jun 2nd, 2009 07:17

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LR hello,

It has been a long time since posts...things have changed a little.

We would like to know where you are in the Phase II....what meds/amts you are taking and a little more info on how you are doing.

Thank you!!!

HANG IN THERE, WE WILL MAKE IT!!!BARNEY

LR
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Posted: Tue Jun 2nd, 2009 15:36

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It is so nice to hear from you Barney!

I thought we were not supposed to tell what meds we were on (last time the moderator deleted them). Right now I am on Olmesartan 40 mg q 8; 5/8 tablet of Zith every 10 days; and 75 mg of Mino every second day. I have been taking the Omesartan once every 8 hours most of the time I have been on MP -- was only on q 6 very briefly.

Occasionally I get aches and pains and mild flu-like symptoms and some tiredness when I increase, but it doesn't usually last too long. I get the achiness worst in my should which I broke on the ball joint in 2004.

I also occasionally get severe muscle cramps (Charley horses in legs, hands, and feet mostly), but I think that is because I have been severely magnesium deficient for decades (well documented with medical tests). When I have not been taking my magnesium for some time (or when I take it and then forget to take it) I can end up with the Charley horses.

Also, although I am not suspectible to heart burn, for the past month I was getting occasional heart burn, which I was initially ignoring and it would go away after 10 minutes to half an hour at most. Then one night about 3 weeks ago, I was taking the Zith, mino and olmesartan one night before going to bed and I didn't drink any water, just tried to swallow with saliva and the last one didn't seem to go down properly. So I went and had a few slips of water and it seemed fine in my throat, but I was getting a strong "chest pain" in the center of my chest, which then radiated out to the left, but maintained the centre position as well.

When it didn't go away I doubled checked a website for symptoms of women's heart attacks and it was not reassuring. I don't think I am a candidate for a heart attack, but how can you be 100% sure (80% sure, but not 100%). So my daughter insisted I call the Ontario Government Telehealth line. I said, "If I call they will insist I go to the hospital". I was finally getting to bed at a decent hour for the first time in weeks, due to a lot of pressure at work and home and didn't want to spend hours in the middle of the night in the emergency room. But I did call and of course, Telehealth called the ambulance for me, and I had to go on a little joy ride with all the bells and whistles in the middle of the night.

They found nothing at the hospital (except that my blood pressure was extremely low (around 60/30 which is not that unusual for me as my blood pressure was low before I started Olmesartan). They did 2 ECGs, a chest x-ray and blood tests and everything seemed clear. They said if it happened again to go and get more heart tests from my doctor, but finally let me go home at 4 am.

So, I don't know if that episode was immunopathology or just from magnesium deficiency with the esophogus spasming because the pill caught for an instant in my throat when I was swallowing. I then got heart burn again a few more times in the last couple of weeks which was clearly heartburn again and not "chest pain" so have not got any more tests.

Other than that I really don't get much in the way of symptoms. So I have been able to go through Phase I, Modified Phase II and am more than half way through full Phase II now in one year. I did once, at the very beginning of MP, have one of my legs go "paralyzed" for a couple of hours, but I just went to bed at my normal time and it was fine in the morning, and never came back again.

The only thing I notice is that my hair has improved (thicker, and less frizzled and less straggly), which may indicate that my celiac condition is improving, although I notice no difference with my bowels themselves.

How often am I supposed to post Barney? When I started on MP after having been urged by moderators to start immediately, although that was not possible as I didn't have a doctor to do it with then, they discouraged me from starting at all, and I went ahead on my own. Then a moderator kindly told me I could post here, but no one answered except to delete the meds line. I had the impression that it was not clear that I was supposed to post at all. I have been posting for my daughter with sarcoidosis, who is a candidate for a lung transplant and no one answers her posts at all. I would have thought she would be more of a priority than me for checking in, when there is a dearth of moderators on the MP. (Not that I am complaining -- it is wonderful to hear from you! Its just that I am not clear about the rules right now.)

Thanks again Barney!

LR

Barney
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Posted: Tue Jun 2nd, 2009 16:28

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My goodness LR,

What a horrible time you and your daughter have had with posting and receiving help from someone here!! I do apologize. What is the name your daughter uses to post and is it on this site.

Ok, lets start w/ the rules. The nurses are no longer answering posts, their choice, but a lot of us 'old timers' are answering the posts w/links and suggestions. Nothing we suggest is a have to for you, just suggestions that can help change IPs (herxes) for you so that things go easier. We have tons of experience to share w/you and your daughter.

Yes, you list your meds and amts here, that is the way we can help you. All phases of MP are now an open book for everyone to look at and use.

Here is a link to the new updated Phase 1, which has everything in it for all phases and stages of MP, it is a must read.

The new, updated Phase 1, has links to all phases and stages of MP, there is lots of info that can still help you even if you are not in Phase 1, links to everything on the MP including Stage 5, here is a link:

Here is some homework for you..please watch the 2 videos and print out the new Phase 1 document since it has lots of new MP info and you can read and reread at your leisure.

The new, updated Phase 1, has links to all phases and stages of MP, there is lots of info that can still help you even if you are not in Phase 1, links to everything on the MP including Stage 5, here is a link:

http://AutoimmunityResearch.org/phase1.pdf

I will also, give you a link to the the Prague presentation that Trevor just got back from, lots of information to move on saying that the Benicar is more important than the abx.

During the recent Workshop on Clamydial Infection in Prague, Czech Republic, I gave an overview of the therapy which has become known as "The Marshall Protocol." An HD video of that presentation is available at:
http://vimeo.com/4293599

In Prague I also summarized the Science underlying that therapy. The HD video is at http://vimeo.com/4307469

This is a lot of wonderful information. Hope you enjoy it.

[ER Instructions]

In case of hospitalization for accident/illness, this should be printed out and place one in your vehicle, one on your person and one in your home for immediate family access. Benicar is organ protective and withdraw can compromise you organs.

Advance Medical Directive …. It would be wise to bring this up to date because before MP if you had DNR, the medical personnel would not try to revive you.

Warning.....Drink Water....!!
Karon Faints in public!

I think you will find Dr. Marshall's most recent presentations very helpful as well:
It is time to bury Koch - Infectious Disease transitions to an understanding of the Metagenome
and
Clinical observations

This is enough to get you started and I will post more links for you as soon as you let me know you have read this. Let me know if you cannot bring up the Prague DVDs.

FYI, we no longer use Benicar at 40mg/8hrs, we now use Benicar 40mg/6hrs and when IPs are bad, like the experience w/your heart (?) we use Benicar 40mg/4hrs w/20mg sublingual until IPs are under control.

Also, you are too high on the Zith, we only go to 4/8, please lower that.

I hope all this helps. We are all volunteers answering the posts but we do try to get to all posts within 24hrs. Those of us are now called Moderators.

HANG IN THERE, WE WILL MAKE IT!!!!BARNEY

Last edited on Tue Jun 2nd, 2009 16:29 by Barney

LR
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Posted: Tue Jun 2nd, 2009 17:27

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Dear Barney,

Thanks so much!

This is WONDERFUL NEWS!

It means, if I am correct, that I am ready to start Phase III !

It is really wonderful, not so much for me, as I have been progressing well, but for my daughter who thought it might be another year before she got to Phase III... after taking two and a half years to get as far as she has. As she is at 3/8 tab of Zith now and 75 mg of Mino, she might be able to go to Phase III in a short a time as 2 months from now! She is on the MP site and her name is Dew.

I have not yet had time to read everything and watch the videos, but I did check Phase I, II and III documents to confirm what I thought you were telling me.

I will increase the Olmesartan to 4 times per day, and read through the rest of the links and videos you sent.

Thanks so much again!

LR

Barney
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Posted: Tue Jun 2nd, 2009 22:23

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Hey LR,

I just posted to your daugther Dew this am.

You might want to read what I told her and plan to stick with her posts.

Dr M is in China right now helping the West China Hospital sit up MP in the hospital. It is going world wide and they are cutting part of the way. It is also going into the UK soon.

HANG IN THERE, WE WILL MAKE IT!!!BARNEY

LR
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Posted: Wed Jun 3rd, 2009 15:33

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Dear Barney,

Thanks so much for posting on my daughter's thread. That is really helpful and much appreciated!

It is wonderful news that the MP is being established in hospitals in China and England as part of their mainstream efforts!!!

LR

Last edited on Wed Jun 3rd, 2009 15:34 by LR

Barney
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Posted: Thu Jun 4th, 2009 01:36

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LR,

The WCH does alternative medical treatment as well as the clinic in the UK.

I answered Dew's post again w/some helpful hints (I hope).

HANG IN THERE, WE WILL MAKE IT!!!BARNEY

LR
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Posted: Fri Jun 5th, 2009 16:57

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Thanks so much for all the new info Barney.

I have read through it all now and forwarded it to various others as well. It is very helpful.

LR

LR
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Posted: Tue Jun 9th, 2009 15:21

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Dear Barney,

I do have another question. My next dose of Zith is due now, but now I am starting Phase III.   My last dose of Zith was 5/8 tablet and you told me to stop and start Phase III.

I re-read the Phase III guidelines when you sent them to me, and again last night and I am still not sure.   Since Zith lingers in the tissues for well over a month, and my Zith is too high and if I add in the Clindy, will it be too much?

Last night I took my Mino and then 1/4 Clindy (probably should have made it an 1/8, but difficult to measure 1/8 of a capsule -- will try that Wednesday). But I hesitated about taking the 1/8 Zith when I already have so much Zith in my system. This morning even without the additional Zith, I am feeling a bit "under the weather". Although it is a cold and rainy day, and I did too much physically in the past few days, I think it is actually the immunopathology making me feel so achy and tired and cold.

So what is the best way to make the transition to the 1/8 Zith; 1/8 CLindy; and 25 mg of Mino? Should I wait a few more days (say another 9 days) and then take the 1/8 Zith, or should I introduce the Zith again at 1/8 today? Or wait until Wednesday night when I take the 1/8 Clindy and 25 mg of Mino?   I am also going to see if I can get some smaller compounded Clindy so the measurement will not be so difficult.

Thanks for whatever advice you can give me, as I am worried about having too much Zith in my system with the Clindy being added in.

LR

Barney
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Posted: Tue Jun 9th, 2009 22:46

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LR,

Wait 9 days before adding in Zith, in the meantime continue the Clindy/Mino at the present levels @ 48hrs.

If you should need it...Benicar should be moved to 40mg/4hrs and if needed you can add 20mg Benicar sublingual.

Have any trouble w/this, post again.

Drink plenty of water, xtra salt (sea) (regular salt is mostly chemicals), lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!

HANG IN THERE, WE WILL MAKE IT!!!BARNEY

Last edited on Tue Jun 9th, 2009 22:47 by Barney

LR
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Posted: Thu Jun 11th, 2009 14:40

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Thanks Barney,

Will wait to add in the Zith at 1/8. Took the Clindy and Mino (25 mg) again last night. Still got a bit too much Clindy (more like a quarter than an eighth) -- have not yet been able to smaller capsules. But no problems.

LR

marion villa
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Posted: Sat Jun 13th, 2009 21:05

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LR:

I buy 300mg clindy, this doses are the ones available here, so I also buy empty capsules and divide the 300mg content in a glass surface and with a credit card I put 16 equall parts of clindy dust, then put that part in an new capsule witha little funnel.

then I get 1/8 capsules

Scarface!!!! Isnt difficult.

____________________
RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|

LR
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Posted: Mon Jun 15th, 2009 15:50

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Thanks Marion,

That sounds like a good idea. I do have extra empty capsules and our Clindy is only in 150 mg capsules. I just wasn't sure that I could get equal 1/8ths,and was worried about losing too much powder in the process.

But doing as you suggest would have to be better than I am doing now, with halving the capsules and then trying to pour 1/4 of a half capsule into my hand or mouth!!!

Thanks for your suggestion. Will try it!

LR
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Posted: Mon Jun 22nd, 2009 20:08

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Zith 31 mg; Mino 25 mg.; Clindy: 19 mg.; Olmesartan: 3 - 4 times per day

I am trying to train myself to remember 4 times a day for the olmesartan. It was difficult to train myself to 3 times a day, but eventually succeeded. Now with the change to 4 times, I am often missing dose #3 which is worse than just taking the Olmesartan on a regular 3 times a day cycle since I end up going for more than 8 hours without the Olmesartan this way. But eventually I will manage to remember to take it in the early evening on a regular 4 x a day schedule!

I took the first Phase 3 1/8 tab dose of Zith on schedule late last week. Felt it the next day when it kicked in but it was tolerable -- just was "under the weather" for a couple of days, and really didn't feel like being at work that first day, but got through it OK.

Other than that, I admit that I can't say that Barney didn't warn me about not getting dehydrated! However, I have got this far into the program without doing anything so stupid (aside from the time I slipped between 2/8 to 3/8 Zith without realizing what I was doing at first and had a very bad week!).

I had a couple of crazy days this weekend, and when I started having a "brown out" in the garden yesterday afternoon (everything got so bright I couldn't see, and I was unsteady, and I had to squat down and lower my head to recover my vision) I realized that I had missed drinking anything for over 18 hours, perhaps more. When I figured that out, I got up VERY slowly and went inside very carefully, and had some water and juice and lay down, and the problem resolved quickly. Never thought I'd be stupid enough to get dehydrated when I have such low blood pressure!!

Plan: May increase the Clindy at the end of the week back to 1/4 (instead of increasing the mino first) since it would be easier to measure the Clindy every second day if it is a larger dose. Once I eventually get to 1/2 of a Clindy, would probably start increasing the mino at that point, instead of further Clindy increases.

LR
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Posted: Tue Jun 30th, 2009 21:16

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Olmesartan q 6 (when I remember

or q 8 or 9 when I don't!); Mino 25 mg; Clindy 1/8 + capsule

Phase III, as predicted, has been more difficult than Phase 1, modified 2 or full Phase 2. However, I continue to get off lightly compared to most -- just more tired than usual on Phase 3.

I did slightly increase the Clindy to make sure I was getting a full 1/8 capsule and am planning to increase to a full 1/4 tomorrow night, while keeping the rest of the medications constant at the current levels.

I shared a lot of the articles from the MP site with my chiropractor as he is more than open-minded (and a real miracle worker as well as a great person) and is interested. He told me he was interested personally, but since he is retired he said he would not have much opportunity to use the info professionally. He just continues to see Dew and I and a few others, since we really need his specialized skills. No other chiropractor seems to be able to learn our strange quirks and deal with my structural hypersensitivity problems. Just letting you know, Barney, that I found the links you sent interesting, and am sharing them around. I need to send them to my doctor too, but haven't got around to it yet, as I forgot to print them before my last appointment so should e-mail them.

LR

Carole
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Posted: Wed Jul 1st, 2009 02:55

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Hello, LR!

These helpful tools are great suggestions for remembering your Rx. I often use a seven-day divided pill box to remind me about what I need to take when.

Best to you! . . . Carole

____________________
Carole's Story

marion villa
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Posted: Wed Jul 1st, 2009 20:07

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LR:

why you don´t put the temporizer of your cell phone to vibe or ring in the next 4hour'?

I do it this way so 5, 4, 3, 2, 1 ring ...take the pill!

____________________
RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|

LR
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Posted: Fri Jul 3rd, 2009 16:34

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Thanks Carole and Marion,

I avoid cell phones mainly due to the electromagnetic fields (and also I don't want people to be expecting to be able to reach me at all hours of the day and night anywhere I am), however, the timer idea is great. I think I have a small timer somewhere, if I can dig it out, that perhaps I could set it each time I take an Olmesartan. It is small enough to fit in my purse. Thanks for the idea!

I did buy a 7 day 4x per day pill divider. But I think I will probably give the pill divider to my daughter since she is mostly at home, and the pill divider box is so big it doesn't fit into my purse to take back and forth to work and home. For me, it is not so much remembering that I need the 4 pills, but remembering to take them on the new 6 hour timing. Sometimes, my daughter wonders if she has taken her pill or not, so the pill box divider can answer that question!

I did successfully train myself to the 3 times per day regime (never thought I'd succeed in that, but I somehow I did, after months of effort) so now need to retrain myself to remembering 4 times per day! Hopefully the little timer can help with that.

Thanks to you both!

I also have a question: Both my daughter and I are having weak dizzy spells and faintness, resulting in temporary bouts of loss of vision -- black outs. We both have had low blood pressure for a very long time, but never before had problems with fainting or blacking out (although sometimes needing to stablize when standing up suddenly, when not well). I am wondering if it is the transition to the Olmetec (although I am mostly still using up the Olmesartan, which is much purer than the Olmetec, but I am increasing my dosage to 4 X per day, while Dew has been on 4 times a day from nearly the beginning). It is strange we are both experiencing the same thing at the same time, despite being in different phases of the MP and having very different symptoms, and severity of illness.

The first time it happened to me I thought it was because I had got dehydrated, but it has been happening to both of us repeatedly when we are not dehydrated. I checked my blood pressure while it was happening yesterday and it was 69/39, which is much higher than my blood pressure has been at other times when I checked it, but was feeling fine. This has started quite suddenly for us both. I am also wondering if it is why my daughter seems so much weaker in general, and feeling much worse than usual.

Is anyone else experiencing these kind of symptoms with the new Schering-Plough Olmetec in Canada?

The listed non-medicinal ingredients are: hydroxypropylcellulose, hydropropymethylcellulose, lactose (which I neither of us really tolerates well, but which we had at times from the Olmesartan from Montreal without these reactions before we got him to give us the non-lactose form), low-substituted hydroxypropylcellulose, magnesium stearate, microcrystalline cellulose, talc, titanium dioxide.

I have no idea what the difference between "low-substituted hydroxypropylcellulose" and "hydroxypropylcellulose" or why both are mentioned if there is no difference.

Thanks,
LR

Last edited on Fri Jul 3rd, 2009 17:24 by LR

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