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AMMC's Journey

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ammc
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Joined:	Sun Apr 12th, 2009
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Posted: Mon Apr 27th, 2009 14:40

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Hello All,

I have been doing a few months of the RB just mino alone and realizing that is not enough to reach the level of health I am looking for so I am going to be starting MP in October. I am VERY lucky to have Dr Blaney as my Dr and I am going to see him October 16th. I have been sick since Jan 2007 I have no confirmed DX I have sjogren's symptoms but a high ANA of 1:2560 and anti RNP antibodies which are usually seen in Mixed Connective Tissue Disease so no one is sure at this point and I am not concerned with a dx.

I have low level of symtoms I guess compared to most I still work full time and don't ever call in sick and am able to exercise 5 days a week. My worst symptoms are dry eye and dry mouth my tongue hurts 24/7 and is cracking and looks a fright plus I have paratoid gland pain that will bring me to tears. My skin on hands is so dry my hands look like I am 90 not 30 something. I don't really have joint pain per se anymore but more muscle pain it was joint when I first got sick but now it's moved on to muscle. Worse in the morning I need to hold on to the wall to get to the washroom in the morning about an hour after hobbling around it's gone. I have removed all D from my diet and am reducing my sun involvement now in anticipation of starting.

I have been to see Dr Blaney before but am waiting to start till October as I am travelling alot for work and a personal trip to Europe this summer so I thought fall would be a good time to start.

I look foward to talking to all of you.

Last edited on Mon Apr 27th, 2009 14:51 by ammc

____________________
Sicca Symptoms since Jan 2007/ 37 years old /dry eyes/mouth/foot pain in arch|work full-time/exercise daily am highly functional/ 25-D positive Ricketssia/Olemetec Q6 10/20/09 mino q48 11/1/09

Barney
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Posted: Wed Apr 29th, 2009 01:41

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Hi AMMC,

Welcome to MP!!!

I will start you out with some homework that will get you ahead of the 'game' so to speak.

The new, updated Phase 1, has links to all phases and stages of MP, there is lots of info that can still help you, 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

Please watch both of the videos and print out the Phase 1 doccument (11 pages) as you will need it to refresh your memory as you travel along the MP journey.

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

ammc
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Posted: Wed Apr 29th, 2009 03:54

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Hi Barney,

Thanks for sending me the video I am watching now. I do have the phase one doc's DR Blaney emailed it to me when it came out. I will continue to keep reading before I start and then come October I am sure I will have a lot more questions.

Thanks

Angela

Barney
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Posted: Wed Apr 29th, 2009 04:16

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Angela

Not a problem!!!! Looking forward to having you on board.

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

Martin78
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Posted: Wed Apr 29th, 2009 23:51

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Hi

Angela, "nice" to see another Sjøgrens patient here

Wish you a nice trip to Europe and good luck with the MP

Br

Martin

ammc
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Posted: Thu Apr 30th, 2009 16:35

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Thanks Martin,

My eyes are not too bad need drops when I wake up and can't wear contacts for more then 3 hours but my mouth is in bad shape. I can't wait to start and get some help for this.

Angela

ammc
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Posted: Sun Oct 11th, 2009 07:39

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I have not posted in this thread for a while but figured I had better start it up again. My appt to see Dr B is on Friday the 16th. I have seen him before but this time it will be to discuss full protocol.

I won't even pretend to admit I am not terrified mostly afraid that I won't be able to do it. I am afraid of failing because it will end up harder then I anticipate. I am afraid of having so many light issues that I won't be able to work I have read some scary stuff on this board. I have such an active and pain free life right now I am afraid of having crippling light issues and not being able to cope. But know I need to do this now before it gets worse and while I have only been sick now for 2.5 years. My current symptoms are really from the neck up lol:

Dry mouth- my poor tongue might never be the same
Sore eyes- mostly in the AM when I wake
Ear pain/fullness- this is new this past month pressure kind of pain in the glands below my earlobes
tinnitus- I think maybe I sometimes have this odd hum but it's related to the above
Sternum pain- I have chest wall inflammation that comes and goes hurts to touch feels bruised but no bruise

I have had in the past when I first got sick joint pain in my fingers and knees, calf muscle pain( relived with magnesium) and pain the arches of my feet. These have all been gone now for 6 months I guess give or take. I have no pain now at all on any day. And take no tylenol or NSAIDS. I am sure these will all come roaring back as I progress on this. I might have been dizzy for a few days too but could have been the mino herx as I am on 100mg a Q48.

If everything goes as planned I plan to start on the 23rd. I have no vacation days left so I will be trying to work while starting this...

Last edited on Sun Oct 11th, 2009 07:44 by ammc

Barney
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Posted: Sun Oct 11th, 2009 08:16

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Hello Angela,

I know pain is no fun, but MP is the answer. Dr B will help you thru as will we here at MP, as you post.

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

ammc
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Posted: Mon Oct 19th, 2009 19:23

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Hello-

Just flew back from my apt with Dr Blaney this weekend he is the nicest man ever. I feel alot better mentally about doing MP now. For me the issue to deal with has never been IP that does not scare me for me it's the light issue which we discussed. I also learned I tested positive for Ricketssia (sp)

I will be starting Olemsarten tomorrow night for 4 weeks and then mino after that.

Last edited on Mon Oct 19th, 2009 19:24 by ammc

Barney
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Posted: Mon Oct 19th, 2009 22:41

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Leroybrown
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Posted: Mon Oct 19th, 2009 23:32

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Hi Angela,

Dr B is my MP dr too, but I haven't met him in person, just on the phone.

I have found I was a bit light sensitive but not that much. I have 10% NoIRs that I wear outside (mostly just driving to & from work), but inside I just had to dim down the monitor and turn off the task lighting. The first week my eyeballs hurt all the time, but it gradually went away. I'm only on olmesartan.

____________________
Autoimmune Pure Red Cell Aplasia, Jan 2009 * hgb: 82, wbc 1.5
Phase 1: Sept 25/09
25D=25 1,25D=58 Aug 18/09
benicar 40mg q6hrs

ammc
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Posted: Tue Oct 20th, 2009 00:23

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Thanks Leroy, yup there seams to be a lot of people who are okay indoors but need NOIRS outdoors that is what we talked about. So I am more at peace with the issue now. I have eye bugs so will likely have more issues for the first few months but he gave me some good advice and some tips so I feel alot better. I could do it over the phone as well he has told me that but I have airmiles and I just love going to see him so my friend and I make a shopping weekend out of it. I have been twice now ( chickened out last Feb) so I think maybe I will go again in a year if I keep up the airmiles. :cool:

Last edited on Tue Oct 20th, 2009 00:25 by ammc

billsheila
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Posted: Tue Oct 20th, 2009 15:44

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ammc wrote: I have had in the past when I first got sick joint pain in my fingers and knees, calf muscle pain( relived with magnesium) and pain the arches of my feet. These have all been gone now for 6 months I guess give or take. I have no pain now at all on any day. And take no tylenol or NSAIDS. I am sure these will all come roaring back as I progress on this.
Angela; I sent you a PM with the same question but maybe that didn't make it through so I thought I would try on the open forum. Re your description above when you first got sick and had hand pain and foot pain...this sounds exactly like my situation. I was wondering if you could tell me more about your experience with the RB (which I presume is the Road Back). I have only just started reading their information, having stumbled onto the MP sites first. My symptom story is a little complicated but flared this past summary due a vit D supplement I was taking, so that is what got me searching for anything I could read on D, which led me to MP.

My status is I have seen a Rheumy (not much help there) and in the process with an MP aware physician. Like you I am scared and wondered if you would mind commenting on your success (or not) with the RB. I have no light issues now but worry about this re the MP as it relates to my job responsibilities etc. So I am wondering about the RB versus the MP (I may post separately on this question) and your experience and recent decision. Many thanks.

ammc
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Posted: Tue Oct 20th, 2009 15:49

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Hi Bill,

It made it through sorry I was just pokey sent you a pm just now... :cool:

ammc
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Posted: Wed Oct 21st, 2009 19:09

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Hi All,

Started Olmetec last night ugg feel like poop. I have a headache which for me is odd as I have maybe had two headaches my whole life and I am dizzy somewhat not when standing just in general if I turn my head to quick or something.

ammc
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Posted: Sun Oct 25th, 2009 00:54

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I am stabilizing myself on Olmatec Q8 ..yes I realize it needs to be Q6 now. However I was having a touch time with excessive dizziness and nausea and I need to work and couldn't so my Dr and I agreed I would do Q8 to adjust and then move to Q6 when I could. I am hoping to start Mino end of November but will see with the new Q8 I have barely noticeable dizziness and mild nausea that lasts about 35 minutes after my pill I will attempt to add the 4th pill back in again this week.

I do notice and increase in my dry eye since starting and some elbow joint pain which I have not had since I fist got sick in 2007 but that is it no light issues as of yet.

ammc
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Posted: Mon Oct 26th, 2009 16:43

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The dizziness is gone now and I feel pretty much normal I found that my naseous feeling I had is gone if I take the Olemetec with toast or something. I emailed my Dr about when to start mino as I was expecint a bigger reaction from Olemetec which is why I planned to start mino after a month .

Last edited on Mon Oct 26th, 2009 16:50 by ammc

ammc
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Posted: Tue Oct 27th, 2009 14:34

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I am olmetec alone for one week today. Other then the initial day to 2 days of feeling a little sick after taking it and some dizziness I feel normal now. I don't feel anything actually no better and no worse. The only thing that hurt for the past 6 months was my baby finger and it still hurts, my eyes might be a little drier as I noticed I used drops 2 times a day for the past few days and I normally only use them as needed a couple times a month.

So I will plod along I have no light or sun issues spent all weekend in my apt and I have the windows all blacked didnt' leave. When I went out Monday I felt the same out as I did in. Mind you it's winter here and dark most of the time. I realize all this will change when I start mino, three weeks from today. But just reporting how I feel so far.

Last edited on Tue Oct 27th, 2009 14:43 by ammc

ammc
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Posted: Wed Nov 4th, 2009 20:56

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Well now 15 days on Olmetec alone Q6 still really dont' really feel that diffferant good, bad or otherwise. I do notice I get this awful metal taste in my mouth that is terrible uggg I have it right now and had it on Monday. I have parartoid gland issues behind my ear as part of my illness and I had a fleeting sharp pain that lasted less 3 minutes last night. But that is it no light issues still and don't appear to have any reaction to sun.

I have decided to up my date to start mino based on the above and will be starting Friday. I should also note I HATE noirs. That awful orange/amber color is terrible. They fog up, make me feel claustrophobic, make the space between my eyes and my cheeks they rest on sweat and feel hot. I wore them driving home from work today because I should not because I needed them and I squinted the whole time and kept shaking my head I hate the color I have no idea how people wear them. I bought 6 pairs of them as I was unsure what style or level I would need I hate them all.

Last edited on Wed Nov 4th, 2009 22:03 by ammc

Marty.K
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Posted: Thu Nov 5th, 2009 03:26

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Haha thats funny, you bought 6 pairs of noirs and you don't like any of them. I don't like any of the NOIR glasses too, but I just ordered a pair of wrap arounds. I'm trying to find a pair of Bolle's I think it might be more stylish. I know they carry styles called "traverse" and "turbulants". Both styles use the "bolle 100" lenses. They have 9% amber lenses which acording to Dr. Marshall are good too. I'm trying to find a place where I can try them on first, they might be more pricer than the noirs.

I'm sure there must be other companies that have special lenses that are just as efective. Let me know if you find something...

____________________
AIH, WBC 2.2, Platelets 25, 25D5.2 June10, Phase1 Nov09, Olmesartan 40mg q6hrs, Minocycline 25mg,

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