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skeeter
Member
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Posted: Mon Oct 13th, 2008 21:09 |
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Hi again and thanks you all for your advise.
A couple questions:
After three doses of 25mg mino every other day (week's worth) and feeling punky, foggy, but nothing unmanageable (wearing 40% NoIR's indoors and 2% outdoors, covered up, and with zinc sunscreen on face and neck, watching D intake, of course taking benicar religiously) I bumped up to 50mg yesterday (so far so good). I have been out of work for two weeks getting the MP started and will return to work later this week(quite anxious because I will be wearing my 40% glasses inside at work, can't see well enough with the darker shades indoors). Even though I don't know my current 25D levels is this the correct timing to increase the mino? And can my 25D go down doing what I am doing to therapeutic levels? I need to be successful at the MP while maintaining my employment even if it takes a little longer.
Second, I have had many sports related injuries, some of which I feel may have brought on my CFS, and need to see a Dr regarding shoulder and neck pain. I read that Tylenol and physical therapy is ok on the MP, but what about a cortisone shot? I would suspect it is not.
Thanks, I hope this all made sense.
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Julia
Advocate (on leave)
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Posted: Mon Oct 13th, 2008 22:00 |
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If increasing mino produces too much IP, you can always reduce it again. Also see How to manage immunopathology.
You're right about steroid shots. See PAIN CONTROL for better ideas.
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Always consult a physician
Essential Info; FAQ; Julia's story
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skeeter
Member
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Posted: Tue Oct 14th, 2008 17:04 |
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I would still like to know if anyone does know. I have to return to work in two days, I have a visible position and really can't wear a hat and will be subject to lots of ambient light and fluorescent light when not in my office and out in the facility (office and out of office time is split about 50/50). My office will be changed to incandescent lighting. I try my best not to eat D in any of my foods and working to eliminate the sugars. My business attire will cover me neck to toes exposing my head and hands on which I cover with the recommended "blue lizard" zinc cream. My eyes are currently covered indoors with 40% NoIR's (10% are just a tad to dark inside) and 2% for outdoors. I can live with the looks and comments. Tell me, am I doing enough with the above to still be making progress on the MP when I return to work? Will my D still be able to get reduced to levels below 20 with the mentioned precautions?
Currently I am finishing my 2nd week and have ramped up to 50 mg of mino, benicar 4x/day. I feel worse the second day after taking the mino (twitching, short term memory issues, headachey,fatigue) but nothing I can't power through. I am still not sure of my light sensitivity and it's effects on me. Are the 40% NoIR's helping? I have to be able to see well for my job (inspections).
I have read the MP wants people who can't diligently avoid sunlight or decide not to avoid it to continue with the MP. If I could I would bury myself in a cave but I have a family and can't. I need the MP to work even if I suffer more or it takes longer to progress. I would like opinions if I am on the right track and any other suggestions.
Thanks again,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Julia
Advocate (on leave)
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Posted: Tue Oct 14th, 2008 23:59 |
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We can't make promises, but it works for some. It worked for me, continuing part time teaching, with no indoor glasses, and moderate daylight exposure in my school room. But for some, this level of light would completely disable them. All you can do is see how it goes.
While daylight might have some effect on 25-D, it has more to do with elevating 1,25-D. To get that 25-D down, and this is vital for progress, you need to be very sure you're not ingesting any D in your food or drink. If you have to eat in the airport canteen this is going to need a lot of attention. Perhaps you could you bring your own food instead?
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Always consult a physician
Essential Info; FAQ; Julia's story
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skeeter
Member
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Posted: Wed Oct 15th, 2008 13:53 |
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Julia,
Thank you for your reassuring words and hopefully with the combination of 2%K-creme and shampoo and zinc lotion and the 40% indoor 2% outdoor NoIR's I can tolerate work.
Also, yesterday I think I had my worst IP but it was in the evening(took 50mg in the morning). Felt sick like I had the flu but it passed in about an hour. (this event occurred before the pathetic Red Sox game ruling the game out as a cause ) Also my eyes hurt even at night with the 40% NoIRs.
This low carb thing still confuses me. I eat Irish oatmeal almost everyday with berries and a dash of pure maple syrup. Is this ok? And what about whole grain un fortified wheat bread? I have found some at Trader Joe's that seems to meet the MP restrictions on additives. Any word if avocados are ok, I read somewhere the verdict on them was still out for MP. I use them in place of mayonnaise on sandwiches.
Thanks,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Julia
Advocate (on leave)
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Posted: Thu Oct 16th, 2008 15:50 |
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>I eat Irish oatmeal almost everyday with berries and a dash of pure maple syrup. Is this ok?
Sounds delicious - low carb doesn't mean no carb. Just remember maple syrup is pure sugar, so a 'dash' only.
And what about whole grain un fortified wheat bread? I have found some at Trader Joe's that seems to meet the MP restrictions on additives.
Sounds good - watch out for folic acid.
Any word if avocados are ok, I read somewhere the verdict on them was still out for MP. I use them in place of mayonnaise on sandwiches.
I don't think they've ever been tested properly for vit D, so be cautious.
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Always consult a physician
Essential Info; FAQ; Julia's story
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skeeter
Member
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Posted: Tue Oct 21st, 2008 17:09 |
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Couple of questions:
I am currently taking Benicar 4x/day (every 6 hrs) 6AM, 12noon, 6PM and mid night. For sleeping purposes is it ok to take the midnight dose at 11PM to get a solid seven hours of sleep? My understanding is you don’t want to exceed 8 hrs between doses of benicar.
Second: My 25D when I started was 24. I am due to retest it next week. I have been on 50mg of minocycline for a little over a week with no debilitating affects. Can I or should I increase the mino to 75mg or should I wait to see if my D is going down (I am watching what I eat and wearing NoIRs.)?
And is there any word on whether avocados are ok to eat? (I miss them)
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
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| Posts: | 224 |
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Posted: Tue Oct 21st, 2008 18:27 |
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For sleeping purposes is it ok to take the midnight dose at 11PM to get a solid seven hours of sleep? My understanding is you don’t want to exceed 8 hrs between doses of benicar.
That should be fine. A lot of people do it that way. Just don't oversleep! 
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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skeeter
Member
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Posted: Tue Oct 21st, 2008 18:41 |
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My 25D when I started was 24. I am due to retest it next week. I have been on 50mg of minocycline for a little over a week with no debilitating affects. Can I or should I increase the mino to 75mg or should I wait to see if my D is going down (I am watching what I eat and wearing NoIRs.)? Must my 25D be below 20 to get the mino to work correctly or can I keep increasing the mino if I can tolerates it as long as I am watching everything I eat? I hope you understand what I am asking.
Thank you,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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P.Bear R.N.
Research Staff
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Posted: Tue Oct 21st, 2008 20:04 |
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Skeeter, may people can begin herxing when their 25-D is over 20ng/ml, but it can become stronger as 25-D levels drop. Whether to increase Mino is up to you and your physician. You might want to post questions like this in your own thread, as this forum is more concerned with analyzing initial D results.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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skeeter
Member
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Posted: Mon Oct 27th, 2008 12:47 |
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I did not check my journal a, and accidentally took 75mg of mino on back to back days instead of every other day like I was doing. Is this going to be a problem?
Also, this weekend I felt light headed and experienced disturbances to my peripheral vision along with constant fatigue. I am attributing these symptoms to light exposure because I had to spend some time out doors (10 and 40% NoIRs indoors 2% outdoors, covered up except face and hands, 10% zinc on exposed areas). Are these typical reactions? Looking for opinions.
Also, I am still confused. I read the combo of benicar and mino work best when the 25D is below 12 but that you shouldn't delay going through phase one to phase two if you can handle the incremental mino loads up to 100mg. I am currently tolerating 75 mg every other day for over a week and would like to go to 100mg at my one month anniversary but I don't know my current 25D level(I had my blood drawn last week and waiting results). I am watching my D intake and would like to know if I can press ahead to 100mg even though my 25D may not be at the optimum level?
Thank you,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Julia
Advocate (on leave)
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Posted: Mon Oct 27th, 2008 15:42 |
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>accidentally took 75mg of mino on back to back days instead of every other day like I was doing. Is this going to be a problem?
It shouldn't be, but to be sure, you might want to stay at 75mg/every other day a bit longer than planned.
>I am currently tolerating 75 mg every other day for over a week and would like to go to 100mg at my one month anniversary
It's a mistake to make such definite plans, it's better to be guided by the level of IP. A week at each dose is a minimum. You've described some fairly rough symptoms - there's no rush. Slow and steady wins the race 
>this weekend I felt light headed and experienced disturbances to my peripheral vision along with constant fatigue. I am attributing these symptoms to light exposure because I had to spend some time out doors
Could be light, could be IP. How long were you outdoors? Did you try increasing Benicar dosage?
How To Identify Immunopathology
Why does exposure to natural light increase symptoms?
Here's what we tell the study members:
The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly.
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster.
If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every 3-4 hours will not work.
If intolerable symptom/s persist, increase oral 40mg Benicar to every three or fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation.
If increasing Benicar does not reduce intolerable symptoms enough, you may adjust mino. Try only one of these options at a time. Assess effect before trying another option:
-reduce the dose first (lowest dose is 25mg)
-extend the schedule to every third or fourth day
-take an extra dose of 25mg (or 50mg if used to a higher dose)
-discontinue until symptoms settle
-ramp up by 25mg See When to increase antibiotics
-take low dose, high frequency mino (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg)
When uncertain what to do when trying to reduce symptoms, it is best to first try reducing the mino dose and/or delaying the next dose before trying an extra dose or frequent mino dosing.
Please make sure you know the following essential information thoroughly:
Phase1 guidelines - print one out for you and one for your doctor, and refer to it often.
FAQs Easy Finder & the ABC of MP - use with the search facilities to find information. How to do a site search
Essential Information About the MP - take this a little at a time!
Read, read, read... and let us know if you can't find what you need...
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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skeeter
Member
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Posted: Wed Oct 29th, 2008 13:14 |
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As one progresses through the MP do you ultimately get back to a normal life? I am an avid big game fisherman and love all things seafood. Will I be able to get back on my boat and enjoy the wonderful (half naked) sun exposure and seafood like in the past. If so, how will you know when you can?
Looking for reassurance,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Julia
Advocate (on leave)
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Posted: Wed Oct 29th, 2008 14:08 |
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See the FAQ What degree of healing is possible using the Marshall Protocol?
How will I know when I've recovered? Can I go out in the sun again after remission?
Leading a normal life again depends so much on how ill you were to start with. I don't think any of us will want to sunbathe ever again, now that we realise what it was doing to us. And personally I haven't managed to look a plate of fresh Irish salmon in the eye again, yet...
But you can get back to a fairly normal diet, and fairly normal sun exposure, long before you 'finish' the MP. Maybe wearing a shirt when you fish! And eating your catch only in moderate quantities - I'm convinced a wide-ranging variety of fresh foods is what makes the safest diet.
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Always consult a physician
Essential Info; FAQ; Julia's story
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skeeter
Member
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Posted: Wed Oct 29th, 2008 19:22 |
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Thank you Julia.
Currently I am back to work. I can't completely cover up (hands and face are exposed but I do put zinc on) and I constantly wear NoIRs in different strengths. I have fashionable presciption wrap around glasses (recommended by this sight) for work with 2% NoIRs for out side and 40% NoIRs for inside. Unless it's real sunny and I am outside I can't function with the 2% lenses and have ordered the 10% to replace the 2% lens in the wrap arounds (I have 40% and 10% in the fit over style but they are too heavy for all day wear and are painful). I would like to know if I am still getting adequate protection wearing the 10% as my all around lenses and using the 40% indoors when I need to see better. I can put a pair of the 40 or 10% fitovers over the 10% wraps arounds when in excessive sun light to darken then on the few times I feel I need to. Basically it feels like sometimes I need a little darker indoors than 40% and not so dark outdoors with 2% and I only have two pairs of wrap arounds to work with at work. Am I still protecting my eyes if I use the 10% as my all around NoIR lens?
I hope you understand what I am asking
Also new D results: 125D is now 30 down from 44
25D is now 21 down from 24 after one month. Is this a significant or expected drop after a month? I am exposed to light but really watching what I am eating and want to make sure that what I am doing leads to progress. I do at times experience very noticable visual disturbances with vertigo and an achy heaviness in my jaw, neck, upper back and arms that I attribute to an IP.
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
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Posted: Wed Oct 29th, 2008 20:24 |
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Skeeter,
You'll want to keep those 2% lenses for outdoor use. Trust me, you'll be glad you did when there is snow on the ground! It's bright!
The general rule of thumb is 2% for outdoor, and 10 or 40% for indoor, depending on how much you can tolerate. Don't forget that your sensitivity may rise as you progress on the MP and your D levels drop.
Will you get enough protection with 10% as an all around lens? Unlikely, but you can try it. If your symptoms get really bad, it may be an indication of too much light. You may want to just go ahead and invest in a pair of 10% Rx and have 3 pairs. Neural effects could cause you some real difficulties at work and the downside cost of that is pretty big!
I carry several pairs of Noirs with me whenever I go out. Get some hard clamshell cases. REI usually has this style http://www.rei.com/product/717447 (the large size is what you want) There's an REI just off 128 in Reading and another one in Framingham. With the case, you can toss your Noirs into your breifcase or bag without worrying about the glasses. Maybe you could add some velcro patches to hold everything in your briefcase neatly.
Your drop in D25 is encouraging. It looks like you are doing well. It takes quite a while to get that down below 12. Keep plugging away, it'll get there!
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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skeeter
Member
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Posted: Thu Oct 30th, 2008 23:14 |
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I just got back from my cardiologist not my MP support doctor. He is very concerned with the amount of benicar I am taking because I do get light headed. He wants me to reduce the amount to 2x a day not 4x a day because my blood preasure was 84/60. I see my MP doc next week.
Thoughts?
skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
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Posted: Thu Oct 30th, 2008 23:34 |
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Skeeter,
Losing your benicar blockade is a very bad idea. Your cardiologist is misinterpreting the symptoms. Blood pressure reduction maxes out at about 40 mg per day. The "extra" benicar is there to inhibit the runaway VDR.
Why am I dizzy and/or fainting? What should I do?
The Need for a Benicar Blockade
My blood pressure is already low. Can I take Benicar?
Frequently Asked Questions About Benicar
Hope this information helps.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Sallie Q
Member
| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 57 |
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Posted: Fri Oct 31st, 2008 03:43 |
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skeeter
when I started taking my BP i was a few weeks into mino, up to dose 50 and still felt a bit lightheaded at avg 94 over 57
a few days later i was on dose 75, no longer lightheaded although herxing more and my BP was 83 over 48.
I think the fact that I was using more salt because advised to, and drinking heaps more water for same reason helped. People at work commented my colour was better also, I had been a bit pale
things seem to start looking worse, alarming partners and medics who won't make time to read all the relevant library sections; Then while all around you are losing it, my eexperience is I feel calmer than I have in my whole life and wonder why other people can not see the difference inside me; not to worry my PCP knows her stuff and tells me I'll have remission of a lot of fog and other stuff in a couple more months as I begin to get the permanent improvement which starts in phase 2.
I've been on 4x benicar a day since the beginning and recently had four days almost continously on 4 hourly benicar owing to a combination of herxing and pressure at work.
BP can fluctuate wierdly, mine was 119 over 70 when I had a fever and 83 over 48 the next day, a day later I was starting to recover but working while still ill. I'm 68 years old.and right now too busy to take my BP, I'm doing fine on dose 100 just herxing brain fog and tired although I had the best sleep ever last night since being on benicar alone. this experience is full of paradox
good luck .Sallie
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
modPh2done 25Dnow~6.5 eGFR49 creatinine100
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skeeter
Member
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Posted: Fri Oct 31st, 2008 12:36 |
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| Thank you folks. I am staying the course. Today I upper my mono to 100mg. I was on 75mg for over a week and seemed to be able to power through any reactions although at times not very pretty. I have made it through my first month.
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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