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ammc
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Posted: Thu Nov 5th, 2009 03:48 |
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yah I know Marty was not impressed I have taken a pair to my optometrist with the specs of what the Noir's cover for all the various lights to see how close my eye doc can get with anything else in a different color. I have never been a sun glass wearer even on the hottest brightest days I just never wear them I never saw the need. But too me any time I did look through someone's or my eyeglasses came with a free clip they are all black. This orange and the 40% ones are almost yellow are terrible. I will be curious to see if during the course of this my body actually feels " better" with them on as right now I can't even drive with them. I thought it was just me so I took them to work today and passed them all around everyone else hated them too. lol
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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
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Marty.K
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Posted: Thu Nov 5th, 2009 04:06 |
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| I don't feel any different yet either, i just wanted to have a pair just incase. I'm usually ok with sun too. But I do remember having headaches when I lived in alberta in the beggining of the summer they had some of the longest days and then again when I lived in the tropics. For the longest time I couldnt figure out why all of a sudden I had these reallly painfull headaches untill I started wearing sunglasses and things got better. I usually don't have any headaches at all. That was way before I found out about MP.
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AIH, WBC 2.2, Platelets 25, 25D21 Oct09, Phase1 Nov09, Olmesartan 40mg q6hrs, Minocycline 25mg, 
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Leroybrown
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Posted: Thu Nov 5th, 2009 13:28 |
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My 10% NoIRs are brown lenses, and they perfectly match the Coach frames I bought. I did also like the Bolle sunglasses, but the people at the sunglass hut didn't know if they also blocked IR. They would have been a lot cheaper and the wrap-arounds were really nice.
I agree, I wouldn't want to be out in public or at work with the NoIR glasses from the company, they weren't really fashionable.
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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
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ammc
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Posted: Thu Nov 5th, 2009 13:36 |
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| I actually like the shape of the wrap around # 35's and I like the 200 series I just hate they are plastic and I hate the color of the lens that brown/orange color does not agree with "me". Last edited on Thu Nov 5th, 2009 13:38 by ammc
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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
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Knochen
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Posted: Thu Nov 5th, 2009 15:52 |
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<Knochen puts on his MP Drill Instructor's hat and attempts to do a fair imitation of R. Lee Ermey for the following  >
OK! Listen up, recruits! Now I know that a lot of you out there are looking at these Noir glasses and saying, "Goodness, I don't want to wear these! They aren't stylish! The lens color is awful. What do I need them for anyway?"
If you will indulge me a moment, I would like to remind you that you are not the first to come up against this, nor will you be the last. However, these amber colored glasses have been found to be your best protection against the ravages of what we in the business call "Light flare". Trust me ladies, the first time you run headlong into light flare, you will not care for it. <Knochen stops, applies his best steely eyed glare here, then returns to pacing as he delivers the remainder of the speech>
I would like to direct your attention to the Fine Manual, otherwise known at the Marshall Protocol Knowledge Base. It is always a good move to Read The Fine Manual before taking action on your own initiative. In the case of light and light exposure, you will want to consult the following:
Photosensitivity
Light restriction
NoIRs
Measuring light
Take note that symptoms of light flare are not, I repeat are not, limited to how your eyes feel. There is a lot more going on. When light sensitivity hits, you may not recognize it for what it is. You may get anxiety, racing heart, paranoia, and an extreme sense of unease and desire to escape. Your physical Th1 symptoms may also flare. These symptoms may or may not manifest themselves within minutes of the light exposure; they may take 24 hours or more to show up. This can make it difficult associate the exposure with the flare, especially if you are having brain fog and short term memory problems, which just happen to be typical light flare symptoms!
<Knochen stops and squarely into the faces the line of new MPers>
One last item: Now of course, you may not be light sensitive. You may also be tonight's big lottery winner. Counting on either of these is not a plan for success. Your job now is to reduce the variables in your life to the smallest possible number so you can exert maximum control over your immunopathology. Failure to do so will prevent you from making meaningful adjustments if and when they need to be made. And trust me, they will need to be made, you can count on it. The MP is not a static exercise. It is a constantly changing landscape that requires that you adapt and adjust to meet the current situation. Keep this in mind and you'll be alright, otherwise you may not make it to the finish line that is far, far down the road.
Just keep telling yourself one thing:
You don't have to like it, you just have to do it!
<Knochen dismisses the group and heads off to enjoy the taste of sublingual Benicar></R.Lee.Ermey>
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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ammc
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Posted: Thu Nov 5th, 2009 16:15 |
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Hi Knochen thanks for the tips. I didn't mention anything about the stylish factor frankly I don't really care what they much look like. And thus far I feel zero nothing when in light or not.. Unless light is making my dry mouth worse then maybe there is a differance. Thus far I suffer from no pain anywhere, no fatigue no anxiety no headaches no eye pain no nothing in or out of light. Except dry mouth and dry eye and the same level of pain in the arch of my one foot. I actually regret posting anything at this point but thought it was best to be honest about how things are for " me' and my illness and level of meds as not everyone is the same.
I did however almost run into the blvd today when making a left hand turn while wearing the Noirs on my way to work I misjudged the distance. I find they make my perception of things very off I missed a step waking up the stairs to work with them on and tripped. I have zero issue with wearing them as you can tell by my above coments I am wearing them I just find no relief or need for them in fact they seem to be causing more issues then not. I am not counting on anything happening ever on any given day but I am posting how I feel on this day with this level of meds and how things are at this point. I have read for 17 months before begining this and have Dr. Blaney as my Dr so I am not going into this blindly I do go back to something I read recently on the boards from Dr M...
Because the organisms causing chronic disease live inside the cells of the immune system, as the microbiota is slowly killed off (during therapy) the patients will experience apoptosis and phagocytosis. This will often cause a cytokine storm, and frequently also photosensitivity.
People who are fully healthy can guzzle the MP medications like candy, suffer no significant cytokine storm, and feel none the worse for their experience. The problems arise solely for those who are very ill, the typical CFS and Chronic Lyme patient.
Not everybody develops photosensitivity, but some of those who do will find that they cannot tolerate even a normal amount of outdoors exposure, and this will sometimes persist for several years into therapy. Managing this photosensitivity is a necessary part of recovery. T. Marshall
I
Last edited on Thu Nov 5th, 2009 16:18 by ammc
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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
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Knochen
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Posted: Thu Nov 5th, 2009 18:08 |
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I actually regret posting anything at this point but thought it was best to be honest about how things are for " me' and my illness and level of meds as not everyone is the same.
You are doing just fine in that regard, and you should continue to post. Based on your sig line, you may well not be seeing any significant IP yet, so the light sensitivity could be low or non-existent. I just wanted to caution you (and the other new folks on the thread - I was sort of aiming this at a general audience) against complacency with regard to light. It can and likely will bite you at some point. Good habits now, while you are comparatively light on the IP are going to pay dividends later when it gets tough.
I'm sorry you are finding the depth perception to be a problem. They do take some getting used to, which is why I advise against going with them only some of the time. Your brain needs to do some readjusting and it needs constant exposure to do that. During that phase, you'll need to be cautious. Right now you can think of them as preventative medicine, even if you aren't seeing any positive effects.
The MP is a personal journey, and many of the things you learn can only be learned by your own experience. A few can be done by rote, trusting in the advice from those who have been there and had the kinetic learning lesson. The glasses is one of those places where it's best to just do it by the numbers for a while. You'll almost certainly hit a point where sensitivity is an issue, and once that happens, no one will need to remind you  .
Don't pay the drill sgt too much mind. His job is to make sure you have the tools and knowledge to get you through the long fight ahead. He wants you to succeed You may have an easy time of it, but it's better to be prepared and ready for anything. When you are in the middle of it, you may not be in any mental condition to absorb the information.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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ammc
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Posted: Sun Nov 8th, 2009 19:52 |
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Well I am on my third dose of Mino 25mg Q48 and Olmetec Q6. I really don't notice anything happening at this point. I pretty much feel the same. I do get about an hour about 10 hours after my dose where I have ear pain and some mild tongue burning but that is really about it. Those do make me happy as 90% of my symptoms are ear, eye and mouth related. First dose of 25 mino I had heavy legs and what felt like a headache wanting to start which lasted 3 hours but now nothing. I am ramping to 50mg on Friday.
I should note I that I never herxed at all on mino using the Brown method of 100mg m-w-f or at least not that I recognized. So I guess I will see what happens. I have decided to mod phase two instead of regular. I read " somewhere" god only knows where I read for hours a day that clindy is good for eye issues and I have dry eye. One thing I will note I have had a pretty persistent metal taste in my month for the past 6 days or so. Not painful in anyway but certainly annoying nothing like eating a nice meal only to left with a metal taste.
Last edited on Sun Nov 8th, 2009 21:27 by ammc
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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
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ammc
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Posted: Fri Nov 13th, 2009 15:19 |
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Olmetec Q6 Mino 50 mg 2nd dose
Well finally today I woke with what might be some IP I have some moderate pain in my right arch of foot and my hands are a little stiff. My pinky finger on my right hand has been numb for a couple of months and it hurts today too. Nothing I would rank over a 1 on a pain scale. But it's something! My neck is stiff like I want a massage ( I normally get one monthly) how do you know if it's IP or just that I slept funny on it?
I have no light issues, no fatigue, anxiety, sore eyes, headaches nothing other then what I listed above. My plan is to stay at 50mg for 7 doses to see if I can get more IP before moving to 75mg.
Last edited on Fri Nov 13th, 2009 15:25 by ammc
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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
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Leroybrown
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Posted: Fri Nov 13th, 2009 18:05 |
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Congrats both on having some IP and it not being too bad!
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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
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Cynthia Schnitz
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Posted: Sat Nov 14th, 2009 01:02 |
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| If your stiff neck is IP, it will probably keep coming and going, or just come if you are unlucky. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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Cynthia Schnitz
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Posted: Sat Nov 14th, 2009 01:03 |
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Last edited on Sat Nov 14th, 2009 01:03 by Cynthia Schnitz
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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ammc
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Posted: Sat Nov 14th, 2009 01:18 |
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Thanks everyone it was short lived to under two hours but at least it was something. I will keep plugging along..
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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
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ammc
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Posted: Sun Nov 15th, 2009 23:00 |
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Olmetec Q6 Mino 50 mg Q 48 3rd dose
I had to post this as I noticed something today. My tongue is one of my worst symptoms ( strange I know) but because I have dry mouth it causes issues with my tongue. For the past week or so I thought I felt like I had more saliva but thought maybe it was just me being hyper sensitive too it.
Till I was flossing at the mirror this morning and noticed my tongue. For about a year it has been patchy and white some say geographic tongue but no dx. It burns all the time and has loads of cracks. I have teeth marks always around the edges and it usually feels too fat for my mouth/inflamed. And it's been constant with no relief. Well today it's pink and hasn't burned much lately and no teeth marks around it. It actually "feels" normal.
It's very early days for me but I am definitely seeing and upward trend in my mouth
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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
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Leroybrown
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Posted: Mon Nov 16th, 2009 01:13 |
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Hey - that's excellent news!
____________________
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
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ammc
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Posted: Mon Nov 16th, 2009 01:19 |
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Thanks, not sure if it's a permanent improvement but this is the most " normal" my mouth has felt in a long time.
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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
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Leroybrown
Member
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Posted: Mon Nov 16th, 2009 01:21 |
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You'll be licking sandpaper in no time!
____________________
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
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ammc
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Posted: Wed Nov 25th, 2009 01:47 |
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I am now on 75mg of mino first dose yesterday and I am cautiously optimistic that I might be herxing. I woke this morning with stiff legs and usually they disappear as soon as I move around it's now 9:00 pm and I still have them I have now noticed also in the past hour I have some pain at the base of my skull where the two joints are and this was an issue most of last year for me. Nothing is over a 1 on a pain scale nothing I would take a tylenol for but something more then I have had previously. I noticed today I am seriously tired napped after work I never nap soooooo I am hoping this is all IP.
My tongue continues to look better and not like a road map and while it burns still not to the point it used to however it's pretty cracked so I am not sure if it will ever be "normal" but here's hoping that the cracks might actually heal..
My Gp called to say my D25 had dropped it was 23ng I am going this week to pick up the new results to see what it's down to. Still zero light sensitivity at this point My plan is too stay at 75mg for two weeks and unless I get severe IP move to the 100mg.
Still undecided what abx I will do for phase 2 I am leaving that up to Dr B to let me know what he feels is best.
Last edited on Wed Nov 25th, 2009 01:51 by ammc
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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
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Madhouse
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Posted: Wed Nov 25th, 2009 04:06 |
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Funny how the increased pain at times is in joints I really did not have much trouble with pre MP. The other thing thats funny is how it comes and goes, sometimes within hours.
Right now my thumbs are throbbing, tomorrow it might be sharp shooting pains in elbows and thumbs might be fine. Definitely cool stuff! Hope it really kicks in when I get my D levels down.
I would try the reg Phase II protocol. I found Zith to be the most beneficial abx for me. Clindy did not do much for me.
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15 Years IBS, 2 years RA.
Started MP June 16,09.
Phase III Oct 3,09.
25-D 10ng/ml.
Meds: Benicar 40mg Qid, Mino 100mg and Clindy 150mg every other day, Zith 125mg every 10 days.
Avoiding direct Sun, Using NOIRS.
Symptoms 70% resolved.
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ammc
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Posted: Wed Nov 25th, 2009 04:18 |
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Thanks Mad that is what I am leaning towards at this point...
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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
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