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Dr Trevor Marshall
Research Team
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Posted: Tue Oct 18th, 2005 00:19 |
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Ken,
When Niels Bohr once heard a lecture by Pauli explaining his version of the unified field theory, Bohr stood up and said, “We in the back are all agreed that your theory is crazy. But what divides us is whether your theory is crazy enough!”
I am a stickler for precision 
..trevor..
ps: now you all know why I am not concerned about being called "crazy" - that is the way science should be pursued. What really irks me are people calling themselves 'experts' who do not even have an inkling of what Niels Bohr was saying. 'Experts' who owe everything to Bohr's atomic theory, the basic concept of the structure of the molecule and atoms, but who just do not understand what SCIENCE is all about. What LEARNING is all about. What DISCOVERY is all about.
[end of rant]
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KFaucher
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Posted: Sun Jan 15th, 2006 11:59 |
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1 Year 36 Days on full MP, 280 Days on phase 2 (standard)
I guess you could say I am having a guilt herx, I don’t update my log very often but decided I should update at least now and then.
Over the holidays I felt that I could have increased the 2nd Abx dose but did not want to risk over-herxing so I held off. By the end of the last cycle (and the end of the year) I felt great! Energy and strength were returning much greater than I had expected. Took the dog for a run on a two mile trail along a local estuarine river with surprising results. I wanted to see what I could do, so I really pushed it. Walked at a very fast pace for the entire way. Never got out of breath, did not tire, no residual effects. I was pleased and surprised. Increased my dose the next day and have felt like hell since!
I increased the dose from ½ to ¾ and received a nasty full system herx. Tried several methods to reduce the herx but they didn’t help much. I am now on day 15 of the cycle and am now feeling like I should at the tail end of a cycle. Tomorrow I will decrease to ½ for a cycle and then increase to 5/8 and take things a little slower.
Two things I have learned from this:
- When not herxing, my health is significantly improved from pre-MP.
- I still have a significant infection and have a long way to go.
Oh well…. Guess I’ll just keep plugging along one herx at a time. My goal is to keep the herx manageable enough so that I can get some exercise each herx and try to improve my conditioning and start returning some aspects of a life. Pushing the MP to maximum herx definitely doesn’t work for me. I could not last long with the kind of herx I have started this year off with. On the other hand, there is also a temptation to go too slow. The knowledge that I could have so much energy simply by stopping the Abx has a certain allure. I can see that for the next few months it will take strength of will to take the Z on a reasonable schedule.
If I don’t check in for a while it is just because it is the same old thing. I will report when I finish phase 2.
Ken
"I am still determined to be cheerful and happy, in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances." Martha Washington
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KFaucher
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Posted: Fri Feb 24th, 2006 19:20 |
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1 Year 76 Days on full MP, 320 Days on phase 2 (standard)
"My twain of thought is loosely bound, I guess it’s time to mark this down" Jimmy Buffett
After my nasty herx from increasing the Z, I reduced the dose back to 1/2Z and got kicked again. Another very nasty herx. So I decided to back off and take a break. Stopped all Abx, the herx mostly died away. Stopped Benicar and all herx stopped. Only stayed off Benicar for 4 or 5 days, then started up at 3/day (had been on 4-6/day).
In another thread I reported: If I had gone through a six week course of abx and come out feeling as good as I do now, I would have been saying I was in full remission, damn near a miracle. Now, after 14 months of MP, I realize just how far I still have to go. Sometimes it is too easy to look ahead to a goal and forget to pay attention to where you are.
When off abx and not herxing: brain fog is gone!!; I have energy; sleep is easy and refreshing; GI tract is working properly; attitude is good, sense of humor returned; I get things done, all those little projects that would normally get put off.
I am still very much out of shape. Muscles have little tone. But my wind is good. I have one of those elliptical trainers and have not been able to use it much. Pre-MP I would go for about 2 minutes, my pulse would dramatically increase, respiration would be ragged, gulping breaths and I would get very dizzy. Today I hopped on for the first time in probable a year and a half. I stopped after 4 minutes because my legs were burning, but my pulse barely increased and breath was easy, deep, through the nose. I felt like, cardiovascularly, I could have gone a long time. And no after effects. Unbelievable! Even throughout phase one this would not have been possible.
-------------------------
I started back into the MP with Mino 100mg every 2 days, added Z back at ¼. No herx at all. Increased to 1/2Z and have had a subtle herx that I would likely have discounted before my break. Now I could see that although I was not feeling bad, I was definitely not as good as I have been. This is the level of herx I hope to continue with. Enough so that I know the Abx are working, light enough to not significantly interfere with life. People report that even after they feel completely recovered they are still herxing long into phase 3. So why push it? I feel well enough to enjoy life again so why keep pushing so much that I am miserable much of the time? Maybe it will take me a little longer (or maybe not), but I am going to go on for a while trying for the Minimum Noticeable Herx. And then I’ll add in plenty of breaks. Yeah, breaks are good. I don’t see myself going more than 2 months without a break from now on.
Ken
"Some people never find it, some only pretend / But me, I just want to live happily ever after / Every now and then" Jimmy Buffett & Dave Loggins
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sunflower
Member in Phase 3
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Posted: Sat Feb 25th, 2006 07:34 |
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thanks alot for posting in this forum, ken. your progress is very encouraging and i always love your quotations !...........sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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KFaucher
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Posted: Thu Apr 27th, 2006 20:53 |
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1 Year 138 Days on full MP, 385 Days on phase 2 (standard)
Not much to report. I milked all I could out of ½ 2nd Abx, then moved up to 5/8. Herx slammed in fairly solid for the first two cycles at this level. Fortunately, I will be going on another break at the end of this cycle (3 more days) so that I can be herx free for my annual salmon fishing trip in Quebec. I doubt that I will be increasing the dose anytime soon. I will be taking another break in June for a boat (kayak) race to support a local land conservation organization, and in July for a kayak fishing tournament, and in August for …well… August.
A note on sun exposure:
On my last cycle at 1/2dose I had no noticeable herx. I took my kayak up to Lake Winnipesauke for a few hours of salmon fishing and had very little reaction to the exposure. A little more tired, eyes burning a little. On this cycle I went fishing on day 2 with the herx beginning to build. Absolutely wiped me out, and the next 4 days were very rough. In the future I will try to remember to cheat at the tail end of the cycle so I can recover before the herx starts again. Yeah, yeah, I know, I shouldn’t cheat at all. But that just wouldn’t be me.
Ken
"Eventually all things merge into one and a river runs through it. The river was cut by the world's great flood and runs over rocks from the basement of time. On some rocks are timeless raindrops. Under the rocks are the words, and some of the words are theirs. I am haunted by water." - Norman Maclean - A River Runs Through It
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Reenie
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Posted: Fri Apr 28th, 2006 18:26 |
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Hi Ken,
As for your light exposure... do you wear a hat? How much exposure do you get on your skin?
I'm curious to know if the head is such a "sore spot" for most people in regards to light exposure as it still is for me.
TIA 
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KFaucher
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Posted: Sat Apr 29th, 2006 11:10 |
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Thanks Barb, I'll report any Abx change in the phase 2/3 forum.
Hi Reenie, I always wear a wide brim hat. Of course I don't have that biker chick reputation to keep up. Actually I wore fedoras before the first Indiana Jones movie. Just feel naked going out without a hat.
On a similar note, I have worn long sleeve shirts and long pants in the sun for years. People think it’s pretty funny seeing me kayak "fully dressed", but I learned long ago that it is cooler and I feel better at the end of the day. Now, in the hot weather, I add a layer of upf 50+ long sleeve/leg swim clothing under my upf 50+ shirt/pants. So far this year I have been wearing thermal clothing, dry suit, and neoprene gloves!
I think my exposure problem is two fold:
- Eyes… I don’t like the NoIR fitovers at all. They let in way too much peripheral light and are very uncomfortable. My Rx glasses are darker than 10% but not down to the 2% level. Usually they are fine, but on the water the glare (polarized reflective light) can be 10 times more intense than normal light. I have been looking for polarized clip-ons, but the quality of most clip- ons is horrible. They are made from cheap plastic and have terrible optics. So I am still searching for a good combination.
- Generally, my exposure coincides with exertion. I have found that exertion and herx don’t mix well.
All right, I’ll add a third. When herxing, my skin is more sensitive. After a few hours, my face will be slightly waxy and swollen. I used to get the same thing pre-MP. When not herxing, this does not happen. The only skin exposed is nose, cheeks and ears. I wear organic sunblock (beard) on most of my face. I use a total spectrum sunblock and apply k-cream when I get home.
I guess I should add that, so far this year, my kayaking/fishing has been early morning or on days with heavy overcast. The overcast days are easier to take, but I do enjoy watching the sunrise from a foggy lake with only a pair of loons for company.
Ken
"I enjoy hats. And when one has filthy hair, that is a good accessory." Julia Roberts
"I myself have twelve hats, and each one represents a different personality. Why be just yourself?" Margaret Atwood
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KFaucher
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Posted: Tue May 30th, 2006 20:16 |
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1 Year 171 Days on full MP, 415 Days on phase 2 (standard)
Break is over. Started back in at 1/4Z and it has hit me hard. Fatigue, brain fog, etc. After feeling good on break it is difficult and frustrating to get back onto the herx roller coaster. I hate being too tired and weak to get things done. On the other hand, I want to get this kicked. I may take only mini breaks for a couple of things coming up in June, just time it to extend the cycle a little longer. That will give me a chance to get back up to speed and start to add in the 3rd Abx before my August break.
Fishing trip was very good. The first morning I landed 3 fish over 40", and all jumped multiple times! We had one sunny calm day, one rainy day, and one sunny windy day. I did not have any noticeable adverse affects from the sun and was even able to get down to the bar for at least a couple of drinks each night.
The new neutrogena sunblock with helioplex is great. It lasts 5 hours instead of the usual 2 hours. Since I always forget to re-apply, this is perfect for me.
I used a pair of Cocoons sunglasses over my glacier glasses. These are polarized gray (I think about 20% vlt), and over my dark brown Rx glasses reduced the vlt to levels about the same as the 2% NoIRs with the added benefit of polarization. It is a fairly comfortable combination.
Since coming back from the fishing trip we have either had flooding rains or bright sun so I was not able to get my kayak out. Now break is over and the herx has kicked in. Aaarrrgghhh!
Ken
"We could never learn to be brave and patient, if there were only joy in the world." Helen Keller
"Screw patience, I'm gonna kill something" One vulture to another
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KFaucher
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Posted: Fri Aug 11th, 2006 15:03 |
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609 Days on MP, Now on Phase 3, Currently on break (again)
Since I last posted here I have been mostly on break, still on Benicar, sometimes on mino sometimes not. Restarted the second week of July and quickly moved up to where I left off. I then got in one cycle of phase 3 and took a scheduled break for an annual camping trip.
I had been a little irritated lately that there seemed to be little improvement over the last year. Well, it turns out that an annual event is a better gage of improvement than a subjective opinion of how one feels at any given moment.
I have been going camping each year since 1983, with a few exceptions, with a small group of guys that have all been friends since junior high school. For many years now I have felt much older than the others. My physical and mental abilities had decayed much faster than theirs had. Last year I felt better than previous years, but was still significantly worse off than my friends. This year a strange thing happened. They seem to be getting older while I am getting younger! Physically I was able to get through all activities as well as, or better, than they did. I admit I was pretty tired at the end of a 6.5 mile kayak trip, but so was everyone else. (it was against the wind the whole way). Brain fog was non-existent. OK, it did take me a couple hours to get going in the morning, but that was mostly hangover. The sun exposure caused no flares, herxes, or nasty symptoms at all. The bottom line is: "Damn! This was a good trip!"
A note on sun exposure: I had a lot of sun exposure. Two days of driving. Two days of kayaking, tubing, swimming, hiking, and generally hanging out in the sun. The only noticeable symptom was red eyes. No brain fog, no fatigue, nothing. Wow!
Now when I say exposure, it needs to be qualified somewhat. Although I was out in the full sun, I kept covered up as much as possible. When kayaking for instance, I wore, from the toes up: neoprene boots, upf 50+ full length swim pants with upf 50+ nylon blend fishing pants, a upf 50+ nylon blend long sleeve fishing shirt, a pfd, a SunTamer hat with legionnaires cape. Eyes protected with two pairs of glasses. Face protected with beard and neutrogenea spf 45 with helioplex (good stuff). Oh yeah, sun protective gloves (fingerless). Last year with similar clothing I got slammed with sun reaction.
So now it’s back to phase 3. I will have to wait and see what another few months of hell will produce.
Ken
"Do not spoil what you have by desiring what you have not; but remember that what you now have was once among the things you only hoped for." Epicurus Greek philosopher (341 BC - 270 BC)
"It is difficult to say what is impossible, for the dream of yesterday is the hope of today and the reality of tomorrow." Robert H. Goddard US physicist & pioneer rocket engineer (1882 - 1945)
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Reenie
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Posted: Fri Aug 11th, 2006 16:46 |
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Ken,
Wow! Thanks for sharing. That's GREAT.
Have you thought of having your Ds retested to see where your numbers are? I would love to know, being I like following mine (Ds) along with my symptoms while I journey thru the MP.
PS After my last venture out during the daytime on my bike, (necessary trip, no adverse reaction) I'm hoping/thinking I'll be able to do a few day trips this coming fall/winter season, all covered up of course.
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KFaucher
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Posted: Fri Aug 11th, 2006 22:05 |
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Hi Reenie,
I already have the script for the D tests (and a few other things) for my next doctor appt in about a month. I will probably get them done next week. Unfortunately I need to go to a different lab as Quest has closed my local lab. The next nearest Quest lab is not really all that far away, but it is out of the way. And I really liked the phleb at the other office.
Glad you are getting out on the bike!
Ken
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Carole
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Posted: Sat Aug 12th, 2006 16:07 |
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Hi, Ken!
Congratulations on the success of your recent trip! It sounds like you were really prepared and faired very well!
I applaud your efforts in managing to live life to the fullest, as I share your exact aspirations; but I wonder as I read your posts if you might consider a different approach with your progression on the MP?
I'm merely suggesting that instead of taking several periodic breaks from the protocol, you would just maintain that present level of Benicar and the antibiotics. This strategy seems to work for me when I face a new challenge or situation. I've had greater success in the past year of my 28-month journey in maintaining a stable, tolerable mode, rather than trying to manage a herx episode from ramping away from home, or in your case--periodically "restarting" the process.
I'm only proposing this since you seem to dread the consequences you face upon your return. Your positive progression is well observed by you and others, so this might be taken into consideration for a smoother "transition" back into the MP phase.
I wish you the best as you recover! Take care, Ken! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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carol
Advocate
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Posted: Sat Aug 12th, 2006 21:35 |
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Dear Ken:
I always read your posts. I appreciate your perspective on this MP journey and I love the quotes . Thanks for reminding me that the best way to gauge progress is year-to-year. Since I haven't taken a break myself, I'll take heart from your experience,
Best wishes,
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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KFaucher
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Posted: Sun Aug 13th, 2006 12:16 |
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Hi Carole,
At my current level (at any given time) I manage to get through the day, doing what needs to be done, and sometimes less. Taking a vacation at that level would not be possible. Someone (I forget who, sorry) suggests cutting back the most recently added abx to half dose. I tried that and although I feel much better for the day to day grind of my curtailed living, it also maintains increased sun sensitivity and increased negative reaction to exertion.
Returning to the MP is not difficult physically. I quickly ramp up to where I left off. The difficult aspect is crawling back into my cave and lowering my expectations. While on treatment my life is greatly reduced. I don't like being chained down. Although in this case, I suppose, I have wrapped the chains around myself and I am holding the ends in my hands. If I don't let go the chains and run free every now and then I will go insane. If that slows the treatment down, so be it. I do not mind trading hypothetical tomorrows for good todays. (Huh…. Spell check tells me that there is no plural for "today", such a small view of the universe.)
Hi Carol the Nomad,
Thanks. I don’t usually post much on internet forums, but since I appreciate posts by others that have been on the MP for as long or longer than me, I try to post updates now and then for others who may be interested (or bored).
You might want to try a break. I have found that more than four months on the MP and the herx gets more chaotic and difficult to predict or control. I really believe that the body needs some down time to recover and reset. Kind of like rebooting the system. The Board Staff may not agree, but I am sure Microsoft would!
"I know I don't get there often enough
But God knows I surely try
It's a magic kind of medicine
That no doctor could prescribe" ONE PARTICULAR HARBOUR
Jimmy Buffett & Bobby Holcomb
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BARNEY
Member in Phase 3
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Posted: Sun Aug 13th, 2006 12:41 |
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Ken,
I do enjoy all of your quotes very very much.
I understand your boredom (since I live alone). Going out (while on meds) is almost intolerable some days. Please read the last post I put on Barneys road to recovery and let me know how much you agree with what I said about going out. I have thought about a break....but honestly, has going back to boredom of the cave been your only hardship of the break....were you sick to your stomach or did you go back to the aches and pain of preMP?
I fear the comeback of Migraines, osteo shoulder pain and drastic MCS. They were so bad that I had become a Hermit in my home anyway.
I go to a steakhouse here in Deming that is pretty 'outside' light free, when I checked out at the cash register, a lady I have known here for 11 yrs told me I looked so much better she could not believe it.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Aussie Barb
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Posted: Sun Aug 13th, 2006 17:10 |
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Ken
Thank you for your posts.
re "The Board Staff may not agree"
Your system of managing the MP is working for you and makes the MP sustainable in the long term.. Dr Marshall and the MP Team encourage MPers to have a break..
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Carole
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Posted: Mon Aug 14th, 2006 13:51 |
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Thanks, Ken, for clarifying your motives and feelings. I misinterpreted what you had expressed a few months ago.
The distinct approach that you have chosen, while staying within the perimeters of the protocol, exhibits the flexibility of the MP to meet individual needs.
It sounds like you are quite experienced and capable, so continue your "rebooting" strategy.  Best wishes and take care! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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KFaucher
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Posted: Tue Aug 15th, 2006 19:30 |
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Hi Barney,
Dress appropriately and don’t panic? Of course I agree with that! I have never been a panicker. I try to take precautions, but I don’t sweat it when a stray sunbeam passes my way. Actually, a lot of that probably comes from having serious doubts the amount of sensitivity I would have. Early in the MP I often received too much light, paid the price, and learned from the experience. The result is that I have a pretty good idea of what I can take, and since I know what the consequences of overexposure are, I have the freedom to knowingly cross the line when I choose to. I suppose the ability to inflict discomfort upon myself is a dubious sort of freedom, but at least I get to choose what is worth it.
When I take a break, I feel great! Much better than pre-MP. Part of that would seem to be improvement of my condition, and part is the anti-inflammatory affect of the Benicar. I had many aches disappear almost immediately when starting Benicar. I strongly doubt that stopping Abx (keeping on Benicar) for a few weeks would bring back your old symptoms. You might even find that you are better off than you think!
p.s I understand what you mean about letting the music take you. Sometimes I will put on a Tim Janus CD, (his music is inspired by the seashore, mountains, lakes and streams of NH & ME), just close my eyes and let the music take me out the places I can’t get to.
Barb, when you copied my quote you left off the punchline. "but I am sure Microsoft would!" I think that’s a crime in some countries…..
Carole,
I forgot that older post, and even that I did a cycle of Z at that time. The problem is that I post more often when I am not feeling well. The symptoms at that time actually disappeared rather quickly. However, I am glad that you mentioned it as I will be a little more cautious in starting again. I have already started the Mino and actually got a fair little herx from it. It was not anything much, but that fact that mino alone could give me a kick kind of surprised me. Maybe I lured the little buggers out where they are more vulnerable.
By the way, "distinct approach" is a very nice wording. I have heard many variations of that throughout my life in all my endeavors.
"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away." Henry David Thoreau, Walden
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KFaucher
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Posted: Sat Sep 2nd, 2006 14:35 |
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New Test Results!
Drum roll please…………
25D = <10 ng/mL (20-100 ng/mL)
1,25D = 34 pg/mL (6-62 pg/mL)
The lab ranges are truly amazing. Absolutely worthless.
Summary 25D / 1,25D
Pre-everything 30 ng/mL / 57 pg/mL
Pre-MP (4 months sun avoidance) 19 ng/mL / 48 pg/mL
8 months MP 13ng/mL / n/a
1 year MP 10 ng/mL / 67 pg/mL
1 year, 8 months <10 ng/mL / 34 pg/mL
I will admit that I thought my 25D would be higher since I had a lot of sun exposure in the two weeks prior to the test. But apparently Trevor is right again, the sun contributed nothing. So, since my sensitivity is reduced, and exposure won’t increase my 25D, I don’t have to feel guilty about my continued exposure. To celebrate I have sent in an avatar. The picture is from before the MP, the smile is because I am holding a 42" Atlantic Salmon.
Ken
"By far the best proof is experience" Sir Francis Bacon (1561 - 1626)
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KFaucher
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Posted: Sun Jan 28th, 2007 14:26 |
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Sorry for not posting here more often. It took me a while to figure out tolerable dosing on phase 3. I think I now have things figured out and can control the immunopatholgy pretty well. Although my two year anniversary was more than a month ago, I have been busy with other stuff. But here, finally is a two year update.
.......................................
I have now been on the Marshall Protocol (MP) for two years. Many symptoms have resolved, but listing them has proven difficult. I am not a note taker. I am disorganized and chaotic. That is something which has not changed with the MP. So, aside from my own memories, I have relied heavily on Dr. Greg Blaney’s presentation at the LAX conference.
I started this illness with the classic flu-like symptoms. Fatigue, weakness, brainfog, swollen lymph nodes. Through the 20 odd years since, many other symptoms have arisen. Some I recognized as being related to CFS, many I did not. At the time I discovered the MP my downward spiral was gaining speed. I was using ski poles for even short walks, and considering a cane for normal use. My physical and mental condition had deteriorated to the point where I could not keep working for much longer.
I am currently on phase 3 of the MP. By adjusting the levels of the 3 abx combo I can manage the immunopathology from not noticeable to debilitating. The last time I took a break from the abx was August. I had no noticeable symptoms, plenty of energy, and was regaining strength through increased activity.
The following is a list of symptoms and how the have, so far, resolved. In no particular order.
Fatigue/weakness – Incredibly improved. Immunopathology makes it difficult to objectify, but when on break it would appear to be completely resolved.
Brain fog – Same as above. Now only my worst immunopathology reaction is capable of turning me into a zombie. It is difficult to describe what it is like to have my mind back, so I am not even going to try.
Muscle/joint pain – Gone gone gone! Returns occasionally as immunopathology, but not often.
Chronic sinusitis, chronic bronchitis – Gone gone gone! I used to get one or the other 2-3 times a year. NOTHING since starting the MP.
Colds, flus, "bugs" etc. – I used to get these on a regular basis. Since the MP I have had one cold (lasted 8 days at only a low level) and one "bug". The "bug" was a GI infection that was never diagnosed, but appears to be a noro virus that is so popular lately.
Lower back pain – I have had this off and on since I was a teenager. Later it has been more on than off. It stopped within 3 days of starting on Benicar. It returns occasionally as temporary immunopathology.
Chest pain – this had become common in the last 10 years. EKG showed nothing, doctors seemed disinclined to look further. It is also gone. Reappears occasionally as immunopathology.
Swollen lymph nodes – common pre-MP symptom, various nodes involved. At the start of the MP, nodes behind knees and elbows were very swollen. This resolved after several months. No problems since.
Skin irregularities:
Red face – always looked drunk.
Oily skin – I had become a real grease ball.
Loss of elasticity on back of hands – Hands looked like I was 100.
Cigarette size areas of thin, easily ripped skin that were slow to heal
Red and oily have gone away. Skin on hands has returned to normal. The little cigarette sized "wounds" disappeared, but return often, in different locations. The new wounds heal in about 10 days, as opposed to 6-12 months previously.
Twitches – I would have small muscle twitches which would last hours-days. For the last year I had an eye twitch that was constant. Gone gone gone. Now barely a memory.
Jaw pain and "click" – Jaw pain would appear for a few days and then disappear. For the last two years I had developed a click in my jaw. It started on the left side on occasion. For the last year it was both sides all the time. Disappeared sometime in phase 1. Has not returned.
Difficulty swallowing – Food would get half way down and just stop. Each meal was a struggle to swallow before choking. Disappeared sometime in phase 1, has not returned.
Reflux like symptoms – Difficult to control, really bad at night. Prilosec was the only thing that could control it. – No change. Still cannot go more than two days without prilosec.
Tinnitus – Had it for years. It is still there, but varies quite a bit with immunopathology. There have been a few days of precious silence. There have been some days of near insanity level pitch and volume.
"Thick" blood – Always had a hard time drawing blood. I would have to continuously clench and relax fist to pump it out. The phlebs thought it was odd but the doctors never seemed interested. My first blood test after staring treatment was at 2 months and blood flowed freely. I have had no problems since.
Wound healing – Used to be nearly non-existent. Even small cuts would last for a long time. Now wounds heal quickly and normally.
Disregulated vitamin D – Original tests showed 1,25D level of 57 pg/ML, about twice the population norm. I am now down to the low 30’s, within normal range.
Sun sensitivity – Prior to the MP I already knew that the sun caused problems. A few hours of fun in the sun would make me feel horrible all night and most of the next morning. Sunburn would put me down for a week. For many years I have worn large brimmed hats, sunglasses, and long sleeved shirts in the sun. When I started the MP my sensitivity increased spectacularly, especially in the eyes. As I have progressed through the MP my sensitivity has steadily decreased. I am now at about the same level I was prior to the MP. Well, maybe a little better. Last summer I still managed to spend a fair amount of time outdoors, kayaking, fishing, swimming etc. . I used some basic precautions and did not have any serious problems, or any moderate ones either. I have enough optimism for this summer that I have already ordered a new kayak.
There are probably a lot of other little things that I never considered symptoms and can’t remember when they stopped. But I find all this introspection a bit boring. I prefer looking ahead. I guess the biggest change is that I now can make plans and have a reasonable chance of seeing them through. I now seem to have a future.
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