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Aunt Diana
Advocate
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Posted: Sun Jan 28th, 2007 14:50 |
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Thank you K Faucher.....I really needed to read your post today....I am at 1 year 2mo. into MP and must be emotionally herxing...have hit a really low spot in my confidence for a future.
You said all the things I needed to hear.
I'm so glad for you in your progress. Hope your next post is from a kayak somewhere. Happy healing.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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migsies
Member in Phase 3
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Posted: Sun Jan 28th, 2007 16:27 |
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K Faucher - Thanks for the inspiration! I spend my days trolling through the MP forum in search of stories such as yours, and when they crop up, boy do they put a smile on my face, as I am persuaded that the neuro-herxing is part of the journey and not the destination. Objectively, I know this to be the case, but when I am herxing, there appears to be no light at the end of this deep dark tunnel (I think John MacDonald had a really good quote to this effect. When I can remember it I will know I am cured!).
Aunt Diana - Don't give up hope! My neuro-emotional herxing peaked at about one year, gave me hell for about four months (partly due to Clindy), and has been subsiding steadily since. The occasional flare-ups are still incapacitating, but nowhere near as intense and prolonged as they used to be. If your herx follows a similar pattern, I am guessing you will be coming around the corner soon! Hang in there!
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Sarcoidosis FM Lyme babesia 25D>7(Feb07) Ph1Aug05 Ph2Oct05 Ph3 Jun06 Valium Lyrica Ambien NoIRs limited outings covered Phase I 8/05, II 10/05, III 6/06.
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Dody
Member in Phase 2
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Posted: Mon Apr 16th, 2007 19:55 |
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Thank you Ken for your posts. You lift my spirits. My partner and I normally spend our vacation kayaking. Nature and the outdoors are what move me the most. Now I close myself off and wait to heal.
It is wonderful to read your story and know that my faith is well founded. I'm a GIS specialist so feel a kindred spirit with you professionally. I have always been very sun sensitive, learned early to cover up and be teased, but am finding summer very bleak this year.
As I rush to the car in the early AM I drink in the sounds and smells of spring, which I continue to maximize on my 5-minute commute by opening the most distant car windows.
Thanks for reinforcing my faith and knowledge that spring and summer will return for me as soon as I'm ready for them.
Dody on Cape Cod
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Lyme arrhythmia Lithium Valium Tylenol Mucinex NoIRs low lux home lite exp r/t to work cover up outside Mod Ph2Jul07 Ph2Apr08 D25 12 Feb08
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Meg Mangin R.N.
Research Team
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Posted: Mon Apr 16th, 2007 22:04 |
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The info in the following threads might help you adjust if you continue to be photosensitive.
Living life on the MP
Ideas for summer holidays
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KFaucher
Member in Phase 3
| Joined: | Sun Aug 1st, 2004 |
| Location: | USA |
| Posts: | 213 |
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Posted: Tue Apr 17th, 2007 19:08 |
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Dody, you have spring down there? So far around here spring feels a lot like winter.
I have to tell you the truth, phase 1 increased my sun sensitivity significantly. It does get better, but the first few months can be tough. Get the most out of mornings and evenings and rainy days. And, every now and then, you might want to skip a dose (or two) and go out and enjoy yourself. Yes, you will pay for it, but it doesn't set you back any.
Good Luck, Ken
"An inconvenience is only an adventure wrongly considered; an adventure is an inconvenience rightly considered." G. K. Chesterton
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Dody
Member in Phase 2
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Posted: Tue Apr 17th, 2007 20:37 |
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Hi Ken,
No spring really, just wild windy rain and cold wind, I'll take it happily. Gave me a couple chances to be outside in the elements. Crocuses. No herring, the herring are in trouble.
No energy anyway. I'm sure you're right, the light thing like everything else will probably get worse before it gets better.
But aah, the spring and summer of '08, or '09. They will come, and your approach will probably be my model! Meanwhile I'll enjoy your progress vicariously through your posts. 
Best, Dody
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Lyme arrhythmia Lithium Valium Tylenol Mucinex NoIRs low lux home lite exp r/t to work cover up outside Mod Ph2Jul07 Ph2Apr08 D25 12 Feb08
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KFaucher
Member in Phase 3
| Joined: | Sun Aug 1st, 2004 |
| Location: | USA |
| Posts: | 213 |
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Posted: Fri May 18th, 2007 19:49 |
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Wow, hard to believe it’s been 4 months since I have updated. I find that as I feel better I spend less time on the internet. And when I due go for a little surf it is generally on "activity" forums rather than "sick" forums.
In February I developed two irritating symptoms that were holding steady instead of pulsing with the antibiotics. One was a skin rash, the other was abdominal pain. I wasn’t sure what the abdominal pain was, but I did not like the constancy of it. So I stopped the Abx. The pain lessened but did not stop. I stopped the benicar and the pain went away in less than two days. Sometimes the IS seems to get stuck and you just have to change things up a bit. I stayed off the Benicar for about a week, then started back up. I added the Abx slowly, starting with one for a few cycles, then adding a second. I basically worked up to a full dose of modified phase 2 for a few weeks, then took a week off for a salmon fishing trip in Quebec. I restarted the Abx when I returned a week ago and will soon add the 3rd Abx .
My activity level over the last month has been pretty high. At work I have been getting out of the office 2-3 days a week and doing fairly strenuous outdoor work. On the weekends I have been getting out with my new pedal drive fishing kayak. A salmon fishing trip with lots of sun, eggs for breakfast, and little sleep. And then there is the basic stuff, like mowing the lawn every 3-4 days until the grass slows down.
If I don’t update again soon it is just because everything is going well.
Ken
"The world's favorite season is the spring. All things seems possible in May." -Edwin Way Teale (1899-1980: naturalist, Pulitzer Prize winner)
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KFaucher
Member in Phase 3
| Joined: | Sun Aug 1st, 2004 |
| Location: | USA |
| Posts: | 213 |
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Posted: Tue Dec 11th, 2007 22:02 |
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Well, it has been three (3!) years since I began the MP!
When I decided to try the MP I was in pretty rough shape. After 20 years of illness (CFS) the downward spiral had hit a critical point. I was failing with increasing rapidity. I was missing more and more work and considering going on disability. Throughout my illness I had avoided all the cure du jours that kept popping up. It seemed that with most treatments people would feel better for a few weeks, then crash to a lower level that when they started. So I was waiting for something to show results. Unfortunately, I reached the point where I did not expect to live much longer. So I looked at the treatments that were out there. I figured I had one shot: I would either get better, or die quicker. At that point I was not sure which outcome would be preferable. With no treatments showing any results, I knew I would be a guinea pig for whatever I chose. When I discovered the MP there were aspects to it that made a lot of sense to me. There was also a good deal that I had my doubts about. If I had been feeling better I would probably not have tried it. But it was time to roll the dice, so I made my decision and went with the MP. Turned out to be a good decision. Although it took a little longer than had originally been predicted, I am almost completely symptom free. I still get some symptomatic response to the Abx and will continue to work through the various Abx combinations. But neither the illness nor the treatment are major factors in my current life. Time will tell how permanent this condition is, (yes I still have doubts), but I will try to enjoy it while it lasts.
Throughout my treatment I did things my own way. Although staying within the MP guidelines, I made my own decisions about some things and pushed a few limits. So for anyone who is interested, here a few things that worked for me. With no guarantee that they will work for anyone else.
- I waited for symptoms to subside between Abx doses. If that meant extending the dose to 3 or 4 days, so be it. There is no such thing as rushing through this treatment no matter how hard you push, so just keep things under control from the start.
- I kept as busy as I could handle. It’s a good rule for chronic illness, and just as good for recovery.
- I took a lot of breaks. Stopped to enjoy life now then. I found that 4 months was about the maximum I could go without a break.
- I have not used increased mino to suppress herx. I don’t like the concept, and won’t use it.
- When the symptoms would not stop after stopping Abx for several days, I stopped Benicar to stop the symptoms.
- Be Patient.
- DON’T PANIC! And pack a beach towel. (Alright, that is for hitch hiking around the galaxy, but it should be good for this too.)
Ken
"There will come a time when you believe everything is finished. That will be the beginning." Louis L’Amour Lonely on the Mountain
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Fred
Member in Phase 2
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Posted: Tue Dec 11th, 2007 22:10 |
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When the symptoms would not stop after stopping Abx for several days, I stopped Benicar to stop the symptoms.
Doesn't this go against just about every piece of advice I've ever read here?
I thought the one consistency of the advocated treatment method was to keep the Benicar going to reduce symptoms, even if stopping/pausing the antibiotics. Theory being that even without abx immune system would still be killing bacteria and causing immunopathology.
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CFS gout 125D55 25D30 Ph1Sep07 ModPh2Dec07 Ph2Jan08 25D19 (Jan08) 25D18 (Mar08) NoIRs rare outings covered low lux home|
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Joyful
Research Team
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 531 |
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Posted: Wed Dec 12th, 2007 01:13 |
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Ken wrote:
... here a few things that worked for me. With no guarantee that they will work for anyone else.
 Thanks Ken, for your words of experience...
... including both the hope and the doubt.
In response to Fred's question:
Doesn't this go against just about every piece of advice I've ever read here?
I believe that the answer is not exactly...
...because if you read the GUIDELINES it specifically states that the protocol is adjusted for individual response.
I looks to me like Ken found that his individual response has been that stopping the Abx often brought resolution to the herx response (IPR). And that when that didn't work for him, he found that he could stop the IPR by stopping the Benicar.
As they say:  "Your mileage may vary."
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Lyme Babs Bart - 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 - cal/mag lysine hydroxyzine valium - rarely leave house NoIRs cover up low lux home - 25D17 Jul08
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BARNEY
Member in Phase 3
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Posted: Wed Dec 12th, 2007 06:44 |
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 CONGRATULATIONS ON YOUR 3 YRS!!!!!!!!!!!!!!!
HANG IN THERE, WE WILL MAKE IT!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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carol
Advocate
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Posted: Wed Dec 12th, 2007 16:36 |
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Regarding the impact of Benicar on symptoms....
As we recover and the innate immune system becomes more active, 1,25-D will recommence its role as VDR agonist. At some point the immunosuppressive action of Benicar (and it's ability to reduce symptoms) becomes dominant over its role in activation of the VDR (which is so critically important at the start of treatment).
So if stopping the Benicar means less activation of VDR, symptoms could be lessened; if stopping the Benicar means less immunosurpression, symptoms could increase
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
Member in Phase 3
| Joined: | Sun Aug 1st, 2004 |
| Location: | USA |
| Posts: | 213 |
| Status: |
Offline
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Posted: Sun Jun 15th, 2008 23:00 |
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cross post with phase 3 forum
Informal (and somewhat rambling) update: Since my last update I have been on and off the MP. I find that for normal day to day living my IP is very minor (the way I prefer it). However, any additional stress can increase it to more annoying levels. Examples of increased stress: increased physical activity, emotional stress, extreme sun exposure. I can handle the increased stress if I am not on Abx, but the combination creates more noticeable IP. This generally manifests as fatigue and slight brain fog. It’s nothing serious or severe, but it is annoying when I have become accustomed to life without them. So if something comes up, I tend to drop the Abx for a few days. Sometimes days stretch to weeks. I find it very difficult to remember to take pills lately. Illness and treatment occupy little of my thoughts and I suddenly realize I haven’t taken any Abx for a week or two. I have kept on with the Benicar, although it varies from 4/day to 1/day.
My sun sensitivity is minimal. I am not taking any precautions against the sun. Well, that’s not really true, let me rephrase that: I am not taking any more precautions against the sun than I did before the MP. I have always worn sunglasses. For many years I have worn sun protective clothing (long sleeve shirts, long pants in light weight sun protective fabric). I feel a bit naked outside without a hat. So while I am more covered up than many, I am not taking any MP strength measures. I have a farmers tan (no more vampire white hands). I have been swimming mid-day with just swim shorts for 15-20 minutes. If I am out longer I put on a swim shirt to prevent sunburn. To be honest, the swim shirts are easier than using sunblock and are really very comfortable.
Physical activity: This winter past, my snowblower broke and I chose not to repair it. No, this winter I decided to manually shovel the driveway. Just because I could. Most people can’t understand that. But I think many on this forum can understand it. I really enjoy being able to do something physically difficult. So I shoveled my 200’ long driveway. And I shoveled, and I shoveled some more. I think we came within one inch of breaking our all time snow fall record! I also spent much of February working in the woods on snowshoes. I was exhausted, but so were my coworkers. We all agreed that this was the most physically demanding winter we ever had. I did not miss a single day due to fatigue! I was out a week with the flu, as was everyone else. Bottom line: no chronic fatigue anymore.
I would like to say that I will check in more often, but that just ain’t gonna happen. So let’s leave it like this: if I get worse, I will update; otherwise just assume I am doing well.
Ken
"Beat L.A." Traditional Celtic chant (Basketball reference)
see previous: KFaucher: I am doing great.
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schesche
inactive member
| Joined: | Sat Oct 13th, 2007 |
| Location: | Graz, Austria |
| Posts: | 154 |
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Offline
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Posted: Mon Jun 16th, 2008 07:44 |
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man--
i am so glad to hear from u--and that u are doing so great..i can´´t tell u how glad i am--
as u are doing so great from the mp--
please do post more often--people here need it--
thankx chris
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CFS, Lyme/neuro,joint pain,brain fog, insomnia,rage 125D56, MP 10/07, Triazep, zolpid, bvi, NoIRs, low lux home, lite exp. r/t work, covered up, 25D16
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