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Aussie Barb
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Posted: Fri Jan 20th, 2006 17:20 |
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Diana
There is information here which describes the supplement as "MSM helps maintain normal immune response" << the FAQ Why do I have to stop taking supplements? says in part: Unnecessary supplementation is to be avoided because we do not know how these supplements interact with the medications on the Marshall Protocol or how they might affect the immune system. ..... You may take supplements ordered by your doctor that treat a documented or suspected deficiency or that relieve a symptom. << so it is between yourself and your Dr to make the choice.
The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines and combined with the Essential aspects of diligently avoiding Light and vitamin D...Phase one is the training ground for gaining experience.. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
My Herxheimer reaction is too strong. What should I do? ..
Do not hesitate to use any of the meds adjustments.
Check these options one at a time to assess and adjust your own situation.
see PAIN CONTROL
re ACE see Why has my ACE gone up since I started the MP?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Thu Jan 26th, 2006 16:13 |
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I wanted to post my progress and am not sure where to do it now.
Help!! thank you.
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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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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Thu Jan 26th, 2006 16:18 |
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Diana
Thank you for asking.. I have merged your post into your report.
To get to your own post each time you log in... go to the my account button up the top. and the link will be there.. thank you..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Thu Jan 26th, 2006 16:56 |
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Hello everyone,
It's been a while since I've posted my progress on MP so here goes.
I ramped up to 75mg mino Q48hrs., benicar 40mg Q8hrs.
Today was my second dose at 75...so far so good. I had some mild herxing yesterday,(achiness, stiffness, sneezing and sinus drainage, then a back ache that seems to be recurring toward the tail end of each mino cycle)...went to bed early (8pm) slept lightly, woke up with my 2a.m. benicar dose and couldn't fall back asleep...so I read for a few hours, went back to bed and dropped right off and slept til 1p.m. (Can't remember taking my 8am dose of benicar but I must have cause it wasn't there and the alarm was set for the next dose at 2pm)
I'm having very good sleeps now....deep and refreshing, dreaming all the time...some good dreams some bad but all the time. And, for the most part, having no problem falling back asleep.....(which used to be impossible for me)
My brain seems clearer and overall I am feeling much less anxious and much less depressed, although I do get teary very easily. (Anxiety and depression have been my middle name for 40 years). I've gotten accustomed to my "cave" and rather like it....I'm glad it's winter however....when spring comes around I may feel differently but I'm hoping I'll be one of the lucky ones who can stand more light at the 6 month mark. No matter what, I am committed to stick with this til I'm "cured".
I was in a local shop the other day, and overheard the owner talking about having problems with his eyes....he said he had something itis....his friend said "conjunctivitis?" and he said no....some other itis.
I asked him could it be "uveitis" and he said "yeah, that's it". So I told him I had a website for him to look at. Meanwhile he said a friend of his said he thought he may have Lyme Disease....at which point I spoke for a few minutes about my own experiences, TH1 inflammatory diseaseses, and of my overall opinion of the "medical establishment" which left both men rather speechless. But by that time I think I had gotten his attention....I hope you hear from him, but his parting words...."but I love the light"....my question is ( who doesn't?) until you begin to see the "cause and effect."
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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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Aunt Diana
Member Advocate
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Posted: Fri Feb 3rd, 2006 23:36 |
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This is an interesting and sometimes disturbing trip.
I think the 75mg mino dose has been pretty difficult herxwise. My mood has been horrible, my energy has disappeared, my sneezing and sinus drainage has increased....but I'm not as achy as before. Just B==chy, it you know what I mean.
A friend dropped in yesterday, and I was so happy to have someone get my mind off of myself, I enjoyed her company immensely, but within an hour was reeling from the energy expenditure of simply listening to her entertaining stories.
I have accepted the fact that I am best left alone for now. No matter how much I miss the fun of being around my friends and nieces, etc. it's just too impossible....too draining. then I get feeling very sorry for myself and go into an "I hate me" campaign. (and hate everyone around me--which only makes me feel worse and more Hate-able), Then I worry about losing my friends....what must they think....most of them really don't understand and dont really want to hear about it anymore. Even though it's probably the most important thing happening in my life I can't share it with anyone. Woe is me.
So I guess this is what you call a neuro herx. It's tough stuff. I feel like I'm hanging by a thread to whatever positive thing I can come up with in my brain. Cleaning my room, taking a bath, making a list.....anything that seems positive.
I do have a question about muscle tone. I would really enjoy hearing of others experiences of this improving. Right now I feel so weak and so incapable of really exercising....it has always proven to be counter-productive since I've had this illness...but meanwhile, I feel like I'm getting weaker and weaker and less capable of exercising. Is there a point where you should just push harder and try more...or is resting better? I'm sure there is no one answer but I'd like to hear others stories about this. I hate the feeling of "giving in" to laziness.
thanks for listening....I'm sorry I'm such a downer right now.
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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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Aussie Barb
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Posted: Fri Feb 3rd, 2006 23:42 |
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Diana
adjusting your meds can make all the difference..
The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines and combined with the Essential aspects of diligently avoiding Light and vitamin D...
Taking your Benicar more often may help you... or Taking your mino dose daily instead of QOD till you stabilise..
Your body is working at full capacity to do the healing, and you can adjust the meds to take the pressure off some..
Do not hesitate to use any of the meds adjustments in
My Herxheimer reaction is too strong. What should I do? ..
Check these options one at a time to assess and adjust your own situation. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.Tools to check:
What is a neuro Herx?
If you are concerned do not hesitate to contact your Dr.
Are there any Guidelines on Exercise & the Marshall Protocol?
GUIDELINES FOR EXERCISE
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Sat Feb 4th, 2006 15:32 |
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Once again, thank you, Aussie Barb, for your prompt and informative response. It is always so comforting to hear from you.
I have adjusted the benicar to 40mgQ4hr. I think it is helping...I don't seem as depressed at all today and actually feel pretty good. The sneezing has seemed to have tapered off, I take benadryl if it gets bad, but I am having constant sinus drainage. What do you think that is? Is it the beasties clearing out of my head? My other symptoms all seem to have levelled off.
I'm not particularly achy, my head feels clear, I am still stiff and awkward but I think that's going to be there for quite a while, no matter what dose I'm on.
I'm sleeping easily and getting lots of it...refreshing sleep. I'm nowhere near as fatigued as I used to be.
I have a few projects that I would like to get started so at least my brain is working that much. I just need to get one thing in order to proceed and that will have to wait til Monday.
So, believe it or not, I am thinking of going to 100mg for my next dose. I have been at 75 for 5 doses. I believe I can tolerate the next level. Do you have any opinions or suggestions.
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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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Aussie Barb
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Posted: Sat Feb 4th, 2006 15:40 |
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Thanks Diana
Please do not increase the dose while you are requiring Benicar Q4H at this dose level.. an increase would be due if you were stable and tolerable on Q6H Benicar and the present dose level at QOD and ready to take more herx...
see I'm eager to get well. How can I speed up my progress on the MP? for more detail.
re herx symptoms: see HERXHEIMER REACTION
we are happy to assist you in any way we can.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Sat Feb 4th, 2006 15:54 |
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| Okay...I'll hold off...thanks for the advice.
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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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Aunt Diana
Member Advocate
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Posted: Mon Feb 6th, 2006 21:38 |
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Hello all,
I am on my 6th dose of 75mg mino and am feeling much better. Sneezing has stopped, I'm sleeping well (and a lot), still using sleep meds however, no aches and pains, no brain fog....in a very good and positive mood. I'm actually planning things, talking and laughing for a change. I think I've stopped herxing but don't know how long that should go on. (not herxing)
I'm considering upping my dose tomorrow to 100 but want a reality check. Thank you in advance.
I do love feeling good, but I want to kill these damn bugs as fast as I can.
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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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Aussie Barb
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Posted: Mon Feb 6th, 2006 21:47 |
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Diana
if you are happy to increase according to your herx being comfortable enough to take more as per Phase One Guideline is fine.
see I'm eager to get well. How can I speed up my progress on the MP? for more detail.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Tue Feb 7th, 2006 22:14 |
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I think I spoke a bit too soon. Today, from the offstart, early a.m. everything seemed a bit "off". I couldn't fall back to sleep, although I had gone to bed very late...wee hrs. of a.m. ...just felt off.
I did shower and dress and by the time I got downstairs realized I was herxing really bad. Achy is an understatement....all bones ache and could barely make it up the stairs, legs were so heavy, as well as arms. Fell back into bed and slept a few hours.
This is a strong herx so I decided not to up my dosing but to rather try the 25mg mino Q4hr. It helped for two hours. Now I'm real achy again and don't know if I can stay awake long enough for the next dose. My alarm is limited to one setting so it's getting to be complicated.
HELP...what should I do? any advice. My next benicar dose (dosing at @6hrs) is due at 1:00a.m....I suppose I could forward that by 2 hours and take the 25mg. mino and benicar at same time. Does this make sense.
Thanks for your help.
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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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Aussie Barb
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Posted: Wed Feb 8th, 2006 03:11 |
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Diana
The more frequent dosing of mino 25mg is for Q6H not Q4H..
and the Benicar dosing can be taken to 40mg Q4H.
If the change in mino and or Benicar dosing isnt making you feel any better, the symptoms may be telling you that an increase in dose is required..
Do not hesitate to use any of the meds adjustments. see the FAQ My Herxheimer reaction is too strong. What should I do? ..
Check these options one at a time to assess and adjust your own situation. Tools to check:<< if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
If you are concerned do not hesitate to contact your Dr.
Let us know if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aunt Diana
Member Advocate
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Posted: Thu Feb 9th, 2006 13:12 |
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Hello again,
Just when I thought I was ready to go up to 100mg mino, I got hit with a ferocious herx. I kept wondering if maybe it was a flu...but I don't think so. Symptoms: exhausted, bones ache (1st time I've ever had that-not muscles, not joints but bones), legs felt like they were 100 lbs each, hot one minute, clammy & cold the next, pulling the covers up then kicking them off, some brain fog, which I hadn't felt for quite a while.....absolutely no energy. Advil helped a bit.
So I took the advice of the experts and changed the mino dosing to 25mgQ6 hrs.. Benicar Q4 hrs. This went on for two days...today, the third day, I am feeling much better. Took my last 25mino dose yesterday noon. But I am up and moving around....bone ache is gone, legs feel much better, no brain fog.
Now I don't know if that herx meant that I need to go up to 100mg mino or I need to keep it down .....anybody have any experience like this? any suggestions?
Another question has arisen. It looks like I may need to move my abode in the next month or so. If I'm herxing like that last one....there is no way I'll be able to do it. So I was wondering if stopping MP for a while might be a good plan. I have some flexibility with timing but not much. (March is the month but I can put it off til mid or the end of March, I think.)
If it is not recommended to go off MP in phase 1, I will have to make other plans re: move. I'm afraid to stop because I don't want to have to go back to the beginning....when I start up again. If it is best to wait til I'm into phase 2, I think I can rearrange the plan.
Any advice would be greatly appreciated. (What would I do without you guys?)
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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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Aussie Barb
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Posted: Thu Feb 9th, 2006 18:13 |
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Thanks Diana
Whilever the frequent mino dosing is holding the herx to tolerable, is what you need to do.. That may be a good plan to continue while you make your move too..
The herx doesnt always stop when stopping the abx. see some information about this in the FAQ How do I come off the MP and what about daylight?
What precautions do I need to take when I am going out or when traveling away?
As you stabilise on the mino and when you are ready, you can extend the schedule of the mino as is tolerable for you.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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sunflower
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Posted: Thu Feb 9th, 2006 23:25 |
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hi diana,
everyone is different, but my experience has been that just trying to stop the mino was not working for me when i needed to tend to family matters. i continued the beni q6h and mino 50 mg q24h (i had been taking 75 mg q72h or qod for quite awhile) and that enabled me to feel pretty well. you might want to experiment with extending out your dose to 72 hr or longer to see how you feel. once i was home again and ready, i just resumed the 75 mg qod and did fine. the thought of moving is daunting, so you take care, ok? best to ya...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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Aunt Diana
Member Advocate
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Posted: Fri Feb 10th, 2006 01:02 |
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Thanks Sunflower,
I think you have some good advice there....I think I was tryng to rush things along too much.....and WOW...what a lesson.
I do not want to go throught that again, if I can avoid it
When I stabilize I will use your suggestions. Take care.
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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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Aunt Diana
Member Advocate
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Posted: Sat Feb 11th, 2006 12:50 |
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Well, after a thoroughly wasted day...much of which I slept....here I am to report the lastest in my battle with the beesties.
I tried the frequent mino dosing (25mgQ6hr), the second or third dose (I'm a bit confused) I could feel the herx starting to gain steam again. It has not totally disagppeared but was tolerable for a while.
Now my plan is to take a day off and try 25mg. tomorrow a.m. then another Q12 hrs. to see what happens.
I have never spent so much time in bed in my life...sleeping. I believe it is my immune system working really hard and using up all my energy. That's what it feels like. When I do get up I have no strength and have to go about everything very carefully and slowly. I'm not too hungry and find one meal a day is about all I want. That will consist of a bowl of hearty soup or fruit and yogurt. Maybe some toast. (I am careful to buy un enriched bread from the local bakery) I always have my trust bottle of water at my side....it tastes delicious. Even getting dressed has been more than I can handle right now. When I'm up I sort of "prop myself" up in front of TV and watch the pretty colors move around the screen...I can barely follow a story line.
Once I feel like I've got some strength back I'll try to go back to 50mg mino Q48....and hope that gets me through the next month if I do have to move and all that.
Thanks for listening. (Now I'm going to write a long list for my poor husband to have to go pick up at the store....we're in for a blizzard I think.)
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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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jrfoutin
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Posted: Sat Feb 11th, 2006 17:47 |
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Diana,
I have had days with more hours spent sleeping, too. But I usually felt better after that with little burst of energy. I go by the rule of thumb that if my body says "tired" I sleep  . For me, it is an inexpensive assist to the MP that seems to work well.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Aussie Barb
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Posted: Sat Feb 11th, 2006 19:05 |
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Diana
If your body will follow your plan will be good, but dont be disappointed if it doesnt.
If you follow the lead of the herx and use the mino as required may keep you at a more tolerable level of function. It can be difficult to read the subtle pull, but you are gaining experience all the time.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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