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katezzz
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Posted: Sat Jun 13th, 2009 06:31 |
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Hi.... (hesitant beginning)..... I feel like I'm back in high school, the quiet one in the back row who's too shy to speak up in class... even though I'm a teacher now... deep breath, here goes....
I've been silently following people's stories of success, discouragement, and hope for many months (on the study cohort site as well), and you all seem so familiar to me. I can't tell you the number of hours I've spent on these sites, as well as Bacteriality, learning as much as I can. I've watched all the videos (they're great) several times. I understand what to do and what not to do, and how important it is not to add anything to the MP or to try to rush it.
I was diagnosed with RA in 1988, at 36 years old. Although I have arthritis in my neck, both wrists and my right foot, at that time only my left knee was affected. I couldn't believe it– I was a healthy, active California girl. I ate organic food. I got lots of sunshine and exercise. I was a meditation teacher! I had been meditating for 16 years and believed illness was caused by stress, which was eliminated with daily meditation. How could this happen to me?
When first diagnosed I got a cortisone shot as a temporary solution while I explored alternative medicine, which I was certain would cure the RA in a matter of months. Here's an excerpt from a paper I wrote in grad school about my healing journey, in year 13:
I’ve followed advice from Edgar Cayce, Louise Hay, Andrew Weil, Bernie Siegal, Deepak Chopra, medical intuitives, and contemporary channeled entities. I’m sure I’ve read every book ever written about arthritis. I’ve tried every possible kind of vitamin and supplement, all kinds of oils and body work, and all of the diets– the no nightshade diet, the Dr. Dong diet, the MacDougal diet, the vegetarian diet, the high protein-low carb diet, the raw foods diet. I went on a week-long fast at the Optimal Health Institute, and not only did I drink wheat grass juice morning, noon and night, at their instruction I poured it into every conceivable orifice in my body (yes, that means wheat grass juice in the eyes, the ears, the nostrils, and daily wheat grass juice enemas). I’ve tried acupuncture and the foul-tasting potions prepared from the roots and berries and bones of traditional Chinese medicine. I’ve had months of Ayurvedic treatment in India, where I ingested handfuls of herbal pills baked in cow dung, where I was rubbed with strong smelling oils and then blasted with steam, where I had butter dripped on my head (impossible to wash out of my hair), and was given basti (enemas again, not my favorite thing) prepared with oils, herbs, butter and possibly goat’s blood. I even let them cover my knee with leeches.
And then of course there were Nikken magnets, the AccuWand (so you can give yourself mini-electric shocks), staring at colored lights for an hour a day. I tried castor oil, curcumin, chiropractic, MSM, CMO, and S.O.D., Rolfing, Reiki, and raisins soaked in gin. I read about the miracles of oxygen therapy, and enthusiastically tried that too– which meant drinking diluted food-grade hydrogen peroxide (highly caustic and highly nauseating) and, of course, hydrogen peroxide enemas (which, because I got the dilution wrong, burned my insides so badly I ended up in the emergency room)....
In the nine years since I wrote that paper, I could add a few dozen more herbs, supplements, potions and powders, and new-age energy medicine treatments to the list, all of them useless. And expensive.
But I largely avoided conventional RA treatments, although I took NSAIDS and had a few months of prednisone. I found it hard to believe the body was making a "mistake," attacking itself for no reason. In year five, after my second trip to India, I discovered the Antibiotic Protocol and have been taking minocycline since 1993. Clearly, though, it hasn't been enough.
I started Benicar Nov. 4th. I'm overdue for Phase 2, partly because I waited over a month for my Vitamin D test from the Grassroots people and then because Trevor was in China when I sent back the questionnaire. But then I started having severe IP for several weeks. Extreme fatigue and pain, depression. School was out so I rarely left the house. More Benicar and less light didn't help. I cut back the minocycline to 25 and that helped. I'm back up to 75.
Some history: I had a knee replacement in 1999; it got infected, had to be taken out while I got around on crutches and had months of IV antibiotics. In 2000 I had a second one put in, and it was fine, gave me no trouble for eight years, until May '08, when the surrounding tissue became swollen and stayed swollen. It got much worse when I first started the MP, but then wasn't so bad, but this past six weeks it's been very painful again. The prosthesis doesn't move quite right, which I suppose is from the swelling. I had an x-ray last summer (pre-MP) when I was in California and the orthopedist couldn't detect anything wrong, so I'm hoping that's the case. But she said they'd have to do extensive tests to know for sure if it's infected. This scares me. By the way, my rheumatologist doesn't know I'm on the MP, and I'm sure he'd be opposed. I worry that if Kaiser finds out and something happens they will claim the MP caused it and not cover me. Or something.
Should I start the Zith and just hope it doesn't get worse?
kate
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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Joyful
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Posted: Sat Jun 13th, 2009 07:04 |
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Hi Kate. 
Your perseverance is amazing.
If your 25-D is nice and low (I think it is), then the next step is to add the next antibiotic, but you may want to start out with a very small dose. I started with 16mg of Zith (after the first dose of 32mg was too much). Who knows, maybe it will help with clearing any supposed infection in your knee more effectively too.
Just keep in mind that if your immune system was not working, there would be NO inflammation. You body would simply just be overrun without any response at all. So having inflammation in your knee might actually be a good sign.
On the MP, as you know from your indepth study, is all about managing the IP (ie. inflammatory response) so you don't do additional damage on the road to erradicating these uninvited pathogens from our system. 
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Joyful
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Posted: Sat Jun 13th, 2009 07:29 |
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Kate,
I just had another thought... perhaps before you start a second antibiotic, you might want to see if frequent Mino provides some anti-inflammatory effect for you. You may have already tried this, but if you haven't, this knee IP may just be the perfect option for experimenting. (See Why and when do you recommend taking minocycline frequently?)
p.s., Here's an interesting article from the MP knowledge base on Duration of the Marshall Protocol.
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Cynthia Schnitz
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Posted: Sat Jun 13th, 2009 16:42 |
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Wow Kate, your odyssey is impressive. I read Adele Davis 40+ years ago, at about 21, and have been a believer in supplementation ever since. Well, now that I know about the MP science, I am no longer a believer, zero, zilch. No more supplements of any kind, tho I might take magnesium if I deem it useful for night time leg cramps that I currently have only a hint of occasionally. Years ago I managed to get a runaway immune system of my own making by taking every know supplement (shot gunning it) that had any thing to do with the immune system to try to correct my auto immune problem. I suffered for a year with this runaway immune system, with lots of damage to my spine area (fortunately temporary), until I discovered the anti-inflammatory effects of fish oil. Bet you haven't had that particular experience, tho I am dismayed that you wouldn't have, with everything that you tried.
Well, I am well on my way to recovery, and at a fairly fast pace, probably due to 6 years of being on a low carb diet (many bacteria are dependent on sugar in the blood) for the symptoms of diabetes. I am currently 7 1/2 months on the MP. My back inflammation is being kept in check by the Benicar, and I have noted that I can now wear pants with tight fitting elastic waists with no discomfort at all, definitely a change. A calcium anomaly is about gone, my finger ulcers resulting from getting chilled are no longer a problem, my life long ear sensitivity to drafts is gone, inflammation in my hip joints, that I didn't even know I had because the nerves were shut down, is clearing as hip range of motion has gone from about 20% to about 60%. My sense of smell has gone from zero, to just continuously poor, with moments of hyper sensitivity. Lots of other minor improvements as well. When I think of how little, with the exception of the fish oil, benefit I got from my supplements, I am amazed that I could have had such faith in them. But I guess when that is all there is, we grasp at crumbs.
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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Joyful
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Posted: Sat Jun 13th, 2009 17:22 |
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Cynthia,
Your improvements really have come quickly. I think the low carb diet really can make a difference. I am curious, do you think fish oil was reducing your inflammation by the immune suppression or some other mechanism? I would expect that the MP FAQs would say it was immune suppression of some kind. 
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marion villa
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Posted: Sat Jun 13th, 2009 20:15 |
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Dear Kate:
We, you and I will get cured!!! This is what I like the most about this MP sites: to know people that really has experienced so much stuff like myself.
Believe me I have been exactly as the path you did, but I also had the conventional arthritis treatments, nsaids, inmmunomdulators, predni,arava quimotherapy etc etc and neither of them are good, so this helps me to be better convinced about MP and wanting to persevere,not minding the herx sufferings and so.
Congratulations about posting in this site, you are in the correct boat, keeping mino doses for a while and slowly increases are the key.
Here I am girl.
maybe your kee pain is also IPR, Dont walk much and I hope it will resolve quickly.
marion
Last edited on Sat Jun 13th, 2009 20:17 by marion villa
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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katezzz
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Posted: Sat Jun 13th, 2009 21:24 |
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Hi Joyful,
Thanks for your advice– starting with an extra low dose sounds like the safest thing to do. I read some moderator replies saying it's not good to be on Phase 1 too long, yet the guidelines say don't add an antibiotic until you don't have IP. It's definitely manageable now. I read the articles. This whole question of inflammation is complicated, isn't it? From what I understand, there are several mechanisms of inflammation, and Benicar impedes some of them: TNF alpha, Interleukin 6 and C Reactive Protein. I googled "Inflammation process" and one link provided a whole bunch of images, but it still mystifies me. I get that attacking bacteria results in inflammation, but I still don't understand what exactly is eroding my joints and why. Is it because the bacteria are living inside my cells? In other words, apoptosis results from antibiotics targeting the bacteria, and my cells are collateral damage? Is there an understandable explanation somewhere?
kate
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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Cynthia Schnitz
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Posted: Sat Jun 13th, 2009 22:04 |
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Kate, apoptosis is normal, and a cell will live a for few years normally. But I understand from my reading that the bacteria postpone the apoptosis for multiple cell life times for their own benefit. So, when you kill the bacteria, you will remove this unnatural support of aged cells, and they die. But, since you are killing only a small number of bacteria at a time, the dying cells are only a few at a time, and you can expect it to go on for some time. So, if I got it wrong, someone correct me.
I read some where on this site that you move on to a higher level of ABx, not when you have no herxing, but when herxing is low enough that you have adequate capacity to add more herx symptoms, that means, also, that you are not taking extra Benicar, short term palliation, or frequent Mino, as each of these represent a form of capacity when needed. I have had continuous tinnitus and seborrhea for the 7 months of my MP journey. Since they never stop, I'd wait forever for them disappear, but they don't enter into the equation of tolerability, so I judge moving on by other symptoms.
Joyful, the fish oil definitely suppressed my immune system, and would knock the inflammation/swelling down in about 15 minutes. Also, it is interesting that I needed 6 capsules of fish oil for the six years before the low carb diet, and by the time I started the MP, after six years of the low carb diet, I was down to one vegetarian omega three (perilla) oil.
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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katezzz
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Posted: Sat Jun 13th, 2009 23:23 |
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Hi Cynthia,
Oh I have done fish oil, for several years. I had a lot of benefit in the beginning– after several months, the swelling in one wrist, that I've had for years, disappeared. Even though I couldn't bend it very far because my bones fused, all the tissue swelling was gone and it was the size of a normal wrist. But it didn't last. The experience gives me hope that with the MP the swelling will eventually go away and stay gone. I suppose the deciding factor is whether the swelling surrounding a joint is fluid or some sort of tissue growth, like scar tissue. It may be different in different stages, different diseases, or different people. I don't know.
My understanding of Omega 3's is that they counteract the proinflammatory Omega 6's in our diet, which come both from animals that have been feed corn instead of their natural diet, as well as from high fructose corn syrup, soybean oil, and cottonseed oil, which are ubiquitous in the foods we buy. Read Michael Pollan's The Omivore's Dilemma for a fascinating account of the food industry.
http://michaelpollan.com/index.htm
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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Cynthia Schnitz
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Posted: Sun Jun 14th, 2009 00:31 |
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| Well, I've read of tissue remodeling on the MP, and of scars slowly going away. Let's hope that is true for RA. 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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Sallie Q
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Posted: Sun Jun 14th, 2009 03:52 |
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hello Kate
the impression I get from reading various sources
is that people have got themselves into a mess by supplementing omega 3
when they should supplement [if absolutely necessary] with sources of omega 6
What I read said if we get more of the sources of omega 6 we automatically get extra omega 3, BUT NEVER GET IT IN THE WRONG PROPORTION .
Obviously it is best for all to follow a natural diet, including all animals. People learned that from the horror stories about feeding animal waste to beef animals who should only eat vegetable matter. Fortunately it is easier to avoid corn fed meat in Australia, as I do not think I could be a vegetarian (although when I am through MP I will have another go as I expect I may then be albe to absorb nutrients better. than could with a dodgy gut
I agree with Cynthia, it may be possible to repair some (probably not all) of the damage in R.A. I assume it would also take a very long time because of the depth of the damage, so the improvements would start to show up late in phase 3 ?
also agree with Cynthia and Joyful about carbs, have hardly ever bought sugar or preserves in forty years 
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b.cancer1990 SjogrensCFS 60%dysreg.vD 25D13.2ng/mL Sep08ph1 Jan09modPh2 25D~19 May09ph3 NoIR lowLuxEtc 25D 5 ng/mL Jan2010
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Joyful
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Posted: Sun Jun 14th, 2009 05:58 |
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Kate,
One of the possible reasons our bodies start 'eroding' is that these pesky pathogens don't just invade the immune cells. There is evidence that they invade the stem cells as well.
The stem cells are what contains the 'blueprints' for how to rebuild ourselves (which is a continual process). If the stem cells have been co-opted by the 'bad guys' for their own purposes, then they are not on the job to rebuild our bones, blood, tissue and so on.
I don't know any specifics and I'm no expert, but it seems logical that depending on the types of pathogens and their distribution, each person would experience a somewhat different set of symptoms... all with the common thread of the body failing to maintain that rebuilding process.
You might find Carol's report on recovery of her wrists (RA) interesting...
Carol  << click here
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katezzz
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Posted: Sun Jun 14th, 2009 16:21 |
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| They invade the stem cells? That's depressing. Where can I read about that?
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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Joyful
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Posted: Sun Jun 14th, 2009 20:50 |
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Some of Dr. Marshall's presentations include references to TEM studies by Emil Wirtosko. This researcher stated that he saw evidence of stem cell infection in his work.
I decided to do a search at the MP knowledge base on the term "stem cell" and came up with these pages: Gray hair and Donation of blood, bone marrow, organs or other tissues.
It's not so depressing if you have a treatment (the MP) that provides a roadmap for recovery that includes clearing the stem cell infection as well.
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alycia2
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Posted: Sun Jun 14th, 2009 21:44 |
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hi kate,
i relate to your journey..i was involved with a meditation group for 13 years..i have studied many kinds of metaphysical teachings. i taught meditation for years..have done yoga for years...and knew about and tried many different healing modalities. many that you mentioned...i also have done extensive psychotherapy and went on to study in school receiving a master's degree in social work in 1995. i first started to get sick in 2001.
i thought it had to do with depression..i had recently left my teachers of many years because of decent within our group...the school was taking a turn that i decided after many months of gurling thought, i didn't want to be a part of.
at any rate, i started then with trying to figure out what was wrong..and really have never stopped...i would get better from time to time but then it seems like my illnesses would take a giant leap and slowly but surly i lost my functioning life as i had known it.
i was at the end of my rope when i found the mp. i really felt like i was dying and there wasn't anything else i could do about it...i had exhausted everything i could get my hands on...a lot harder to find practitioners in oklahoma city! and like you, i was really mortified that after all the years of working so hard to develop myself...clean and clear..change self destructive behaviors...eat well etc.....here i was so ill....
i'm slowly getting over that...but it is a process. i don't so much feel angry anymore...depressed some for sure but after having a terrible emotional breakdown about it all last week, i feel stronger and more equipped to do the mp. and, very grateful to have it...
i would be interested in following your progress and would welcome pm if you want to ever talk..
it helps..
i'm glad you have found your way here. i think of all the things, this is going to be the one that really heals us...not just make our life bearable but heals...
take care.
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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katezzz
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Posted: Mon Jun 15th, 2009 00:12 |
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Hi Alycia,
I just looked at a bunch of your posts... I'm grateful to see people talking about being depressed... keeps it real. I find it so hard to stay positive, find myself ruminating about how different my life has turned out from when I felt confident about myself, my life, about life in general. Then I give myself a mental whack upside the head and tell myself to stop whining and be grateful for what I have... things could always be worse. And I really know that. But still, I can't help feeling pissed off. And I am soooo envious of people who have their health. Pre-MP I managed better, could work through the pain for the most part, could carry on because the supplement du jour was suppressing my immune system just enough to do what I had to do. Now I feel so weak and debilitated... I noticed that I've been seeing the entire world as divided up into the healthy and the sick. So even watching a movie, I can't just relax and escape, I sit there the whole time noticing how people move with ease, pick stuff up, get up and down... all without taking five minutes to do anything and going "ow, ow, ow" in the process. I know... I need to get over myself. Or start watching movies about sickness and death. Have you seen that movie about people with Lyme? Is it out yet? Under Our Skin.
I'm glad I found the MP... grateful it exists. I'm appreciative of all the work Trevor and others are doing to advance the science and get the word out. I'm encouraged by the success stories, yet discouraged that some are not as well as they'd like to be after several years. I'm a little afraid of being in that category... I've been so disappointed in so many "cures" I gave my all to. I do feel...know...the MP is different, but... well forget the "buts." I'll just have to accept that it takes a long time and someday I'll be well again (probably about the time everyone around me is falling apart and I'll have to be the official caretaker!)
kate
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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katezzz
Member
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Posted: Mon Jun 15th, 2009 00:20 |
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Dear Marion... thanks for the words of encouragement. You're one of the people I've been following because you have RA too. It's nice to hear from you. I am encouraged by your improvement and your positive attitude! So are you still able to work as a dentist? Do you have a lot of joint damage? I just listened to a lecture about RA on YouTube and the doctor, or maybe he was a professor, said joint erosion happens in the first three years then levels off. What's your experience with that?
kate
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RA since 1988; AP since 1993; MP Nov. 2008; Phase 2:
Was up to Zith 62 but now stopping all antibiotics to manage IP; Benicar 40 mg q4 or q6, and sometimes 20 SL; Dilaudid q4. May: 25D= 14
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alycia2
Member
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Posted: Mon Jun 15th, 2009 16:40 |
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hi kate,
i know what you mean about looking at people...pre mp our kids got really good tickets to a bedlam football team they love...and asked us to join...i felt so bad but like i did often back then, agreed to go...i was so not wanting to let others down and i wanted to be with my grown children...develop that friendship..anyway, i remember sitting there in a fog...thinking how can i be the only one here that feels this bad...it was like the whole stadium was filled with these happy excited people...it was overwhelming...bacause, i am not overweight, have all my limbs, my sight, i can walk...and yet i sat there in this brain fog and pain....it occurred to me at one point to just try to breath in some of the happiness all around me...like it was ok to use some of the high intense energy...just to get me through the game..it helped but in doing that, found myself with tears dripping down my face...it was all just so confusing...
now, it is so much better...it does help to have a dianosis...and i know you have been diagnosed with ra but...if ra is a th1 symptom...then it is th1 disease you have not ra...and the success stories of those getting better from the mp treatment are huge compared to any other support site for any of the autoimmune diseases and lyme disease sites i have read...and no, i haven't seen the movie 'under our skin' but am looking forward to it....i know this process is a long one...it scares me too. but the alternative is just a frightening...more so really because all i had there was horrible high powered drugs that left me even more debilitated...and didn't take away my symptoms...just produced more...
and why? i don't know..maybe we will be able to help another...maybe there is no rhyme or reason to things...maybe like the old t-shirts used to say sh-- happens...i don't know...it's easier to live if you have a belief system that says everything happens for a reason...but, i have lost that...now, i think it's important to try to stay in the moment..that way, at least, if everything does happen for a reason and there is someone/thing out there directing all or by our past our future has been created, we will at least be present and hopefully of sound enough mind to realize this is an important moment, and if not, the moment will come again..until it doesn't!
so there!!!! not trying to make light of it..but it is a way to cope. and truthfully, i am just tired of trying to figure it out...it's enough for me right now to just figure out how to use my mp meds..be aware of my ip's and be able to competently communicate with my doctor...some days are better than others..and as you see from my post, i do get depressed...and i do haved anger..but i'm finding that if i just go ahead and cry...tell someone how i feel....give myself permission to sleep and care for myself like i would a sick friend or family member, i do feel better...
my caring goes out to you..
alycia
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tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
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Cynthia Schnitz
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Posted: Mon Jun 15th, 2009 18:00 |
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| Kate, don't get down about the fact that most of the work is in front of you and not behind. I feel certain that the protocol is going to have major improvements while you are on it, so that you will likely find it easier and more efficient thru your journey, than those that came before you. Remember also that these are exciting times, and you are part of something very historic. 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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Knochen
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Posted: Tue Jun 16th, 2009 12:45 |
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The MP isn't easy, and it takes its sweet time in getting you to the end, but it's always good to remember that people have suffered worse and managed somehow. Lend a hand when you can, take cover when you have to. It could be worse.
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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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