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kathleen
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Posted: Tue Jan 4th, 2005 01:28 |
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I'm sorry for not updating for so long.
I'm now up to 62mg. of mino and will go to 75 on Wednesday.
I'm fainting much less, but have become ridiculously sensative to certain bright lights, even with Noir on. I get wild visual effects, either fractured cyrstal light, even with eyes closed, or soft swirly white snake like images. The light shows are pretty, but they are accompanied by bad fainting and generally feeling weak and awful. So, no going into some stores at all for now.
And, my sleep pattern is way off. It slipped some when I blocked all of my windows, but now I'm not able to get to sleep until 4:30 am. With the pressure of the holidays over, I'm sleeping 8 hours, but am still very tired and need a nap in the early evening. I've just given up on getting anything beyond the bare essentials done for now.
My TSH was low, and T4 a little higher than usual. I decreased my synthroid a bit. I'll retest in Feb, when I next see doctors. The thyroid isn't an exceuse for the sleep problem - sleep has been one of the most difficult parts of my particular CFS for all 21 years, so it's no surprise that it should get worse. Hopefully before getting better. It was better at first, on just Benicar. Time will tell.
I wonder what will be next? I hope this is all part of my body surviving the death of long time non paying guests, myco etc.
It's great to see that people are reporting feeling better. I still feel quite a bit worse, but hope that it's all part of progress.
XXOO Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Reenie
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Posted: Tue Jan 4th, 2005 21:06 |
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Hi Kathleen,
I'm sorry you're still having a hard time, but it sounds like your thyroid is beginning to work better! That's GOOD. 
My sleep did that sort of pattern too, for a long time. I couldn't get to sleep sometimes until 2am or later. Now, I'm able to go to sleep right after my midnight dose of Benicar.
I'm sure things will get better for you too.
Take care.
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kathleen
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Posted: Wed Jan 5th, 2005 22:07 |
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Dear Reenie,
Thank you for the encouragement. I'm in bed most of the day now, since getting to sleep at 4 or 4:30 and waking up at maybe 12:30 means lying down until at least 2:00 to avoid too much faintling. I can knit and read so it's not hellish, just frustrating because this is always my most active time of year, when I get things accomplished. This winter is turning out to be like my usual summers, more lost time. Unless of course it's part of a brighter future. I hope.
Do other people report the dramatic light shows as part of being snew MP light sensativity? I haven't seen any reports, but you read alot more than I do. Too mush time in front of the computer, even with my Noirs on isn't a good thing for me.
I want to increase my mino, even though I'm not doing well. I'm thinking that it will be good to get on with it. I have a month when I can stay in bed as much as I need to. All I absolutely have to be able to manage is food shopping, cooking and a weekly trip to the library. I have to go to NY in Feb to see doctors, so it would be great to be ready for the next stage then. I'll slow down if symptoms get too bad for a walk every other evening.
Thank you again, Kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Reenie
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Posted: Thu Jan 6th, 2005 00:08 |
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Hi Kathleen,
I can't say that there's alot of reports of light shows, but many reports of sensitivity to light, that varies w/different people.
As for your fatigue, have you tried stopping the Quercetin for awhile to see if that changes? There are reports that some people actually have more herx sxs early on, w/Q, while later on, have more sx relief from Quercetin.
FWIW, I typically sleep 9-10 hrs, then when I herx, like yesterday, I take frequent naps. I was in bed and asleep alot more than up or awake. 
As long as you're herxing at this dose of mino, there's no need to ramp up for a while. You'd be killing bugs. 
BTW, there are some that give themselves a bit of a reprieve by taking mino on M, W, F, then off for the weekend, or just add an extra day or two in between doses, if you feel you need a break.
Take care
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kathleen
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Posted: Fri Jan 7th, 2005 21:38 |
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Thank you Reenie,
I'm more interested in getting through this stage than in taking breaks. As long as I can manage getting food and books, I'll be OK.
I increased to 75 mg. of mino yesterday and really felt it this "morning", which was actually 1:30 in everyone else's afternoon. I have a feeling that I'll stay at 75 mg. for a while. On the other hand I really want to be able to get to sleep by 12:30 again asap.
My fainting is worse again, which I think is still from having been in CVS with their bright lights, even though I had my Noirs on. I won't go in there again unless I absolutely have to.
I stopped the Q yesterday and will see if I can tell a difference. It's hard to tell, when every day is a new adventure.
I'm so curious about the dramatic light shows I have. Should I post in the general questions to ask if other people are having the same experience?
Thank you, Kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Jan 7th, 2005 22:03 |
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Kathleen,
I used to have white snake-like things swim across my vision after I closed my eyes, and often had flashes of bright light in the eyes and white spots coming and going in the dark. I just wrote a note for Huey (about his cold toes) talking about the Amygdala. Here is a copy of it:The effect may have been due to changes in your brain, rather than your feet, especially if the toes' temperature did not change. Dr Brian Fallon's study implicated the Amygdala, which is the thing which processes stimuli into a form that the rest of the senses can use. So if the Amygdala has gone awry, then there is no telling what prefectly normal sensations might be perceived as.
Isn't Herx wonderful? None of us would have recovered had we not been able to live through these strange episodes and come to understand what an incredibly complex and beautifully balanced thing is the human body 
..Trevor..
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kathleen
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Posted: Sat Jan 15th, 2005 00:35 |
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I'm back.
I increased to 87mg. of mino, which I've taken twice now. I can feel it. I take it in the morning and feel sort of nauseaus a few hours later. Nothing terrible, just reporting.
Because my sleep is so much worse, it's hard to sort out what is what. I actually fell over at the library the other night. I had forgotten to put on my Noirs for about 5 minutes when I got there because I was so breathless from walking. I've become totally light sensative - more to florescent than to the sun as far as immediate fainting goes. It's a lovely small town type library, and all I had to do was say "no drama please, I'm OK" and it was fine, and I got a ride home with enough books for this week.
I tried Excederin PM which put me to sleep but I had terrible nighmares which eliminated any rest. Last night I tried Melatonin. In the past it had acted as a stimulant, but I thought it was worth another try. I've been sleeping on and off all day. Maybe a lower dose, after a break to let it all get out of my system.
Should I wait to see if my sleep improves before increasing to 100mg of mino? I'll see my doctor in mid February and want to bring him instructions for stage 2 so that he can prescribe the mysterious Z. I also would rather get this part over with, or maybe sleep will be my biggest herx and the problem will continue on. I realize that there's no way to predict what will happen. But maybe I could increase next week and if the lack of sleep gets too much worse retreat back to 87 mg???
For now the lack of sleep and fainting are the only continual probelms that definitely seem like herx. I have aches in waves on the second day, which I figure is good, if not fun. A gland in my throat is more swollen than usual, I don't know if it's herx or an actual cold germ that I caught?
I have had some vaginal yeast, but used the trusty boric acid in a capsule treatment with usual success.
Thank you, Kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Reenie
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Posted: Sat Jan 15th, 2005 03:37 |
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Hi Kathleen,
It seems to me, you're ramping up rather quickly. If you had no sxs to report, then I would say, move up the dose, but, IMO, since your sleep is disrupted, you're having more pain on the day after dosing, and you're definitely having more light sensitivity, stay at this dose for at least a little longer and wait and see if some of your sxs die down.
This might give you an indication as to how much of it is herxing, although herxing can also be what some call 'perma-herx,' where the sxs continue and don't wax and wane. Let's see if you get a reprieve, if you stay at this dose for a little longer.
Just take your time, no hurry.
PS Would you kindly update your sig line with your mino start date too? TIA
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kathleen
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Posted: Sat Jan 15th, 2005 23:33 |
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Thank you Reenie and Barb,
I'll see the doctor in mid-February. I really need to have instructions for the next prescription when I see him, since I won't go back to NYC again for a couple more months. When I'm as sick as I am now I need to stay in the country where it's quiet, and can't travel back and forth often.
Whew! I'm feeling bad enough that I'm really willing to wait to increase the mino again. This afternoon when I woke up (after sleeping from 9 am until 4 pm) I felt hopeless and discouraged for the first time since I started the MP. I know that it's the die off, and that it's a good thing, but a little less would be fine too. I have no actual thoughts of giving up - you'll be stuck with me for quite a while yet.
I'll try alot less melatonin tonight and see what happens. 5mg. was too much, maybe less will be helpful without causing trouble? I'll let you know.
Thank you, Kathleen (I can't say thank you too many times)
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Posted: Sun Jan 16th, 2005 02:04 |
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Kathleen,
Any doctors who join the MP.com professionals forum have access to all three phases of the MP. If your doctor needs you to bring him a copy, please send me your email address. We'd like you to fill out a questionnaire first. Just remind me of your special circumstances, please.
You sound like a real trooper. Those bugs are no match for you and the MP!
Hang in there,
Meg
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Reenie
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Posted: Mon Jan 17th, 2005 06:47 |
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Hi Kathleen,
You say you took 5mg of melatonin? That's alot. I'm sure that added to your fatigue.
I tried melatonin years ago and I remember the recommended dose was 3mg, which made me feel very lethargic the next day.
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kathleen
member.
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Posted: Fri Jan 21st, 2005 20:43 |
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Please, Meg or Dr. M
I'm at day 112 of taking Benicar every 6 hours, and day 74 of mino every other day. I'm at day 10 of mino 87 mg..
My worst problem is my sleep. For instance, last night I slept from 2:00 am until 4:30 am, and then from 9:00 am until 4:00 pm. Some nights I can't sleep at all and others I sleep right through for 15 hours. Sleep has been a problem for my 21 years of CFS, so it's not a surprise but it is bigger problem now. I'm continually weak and extremely exhausted.
I have dysautonomia, and quite bad postural hypotension. I was at NIH a few years ago and my norepinephron is extremely low. They wondered how I maintain reasonable BP and stand up, at all. It's been worse since I started the Benicar. My cardiologist is aware and the doctors trust me to be very careful, which I am. Fine, but yesterday it was so bad I really couldn't get up out of bed and go downstairs for food until very late in the day. I live alone, which has it's advantages (a totally darkened house) but also drawbacks. I need to be able to go out for food and to the library. I don't drive because of my cog. problems, so I need to be able to walk.
The sleep and syncope have been alot worse since I increased to 87 mg. of mino. I guess that the obvious thing to do is to decrease the dose some. Except that I wonder if the same thing will happen again when I eventually increase again. So, might it be better to just keep going, live through this and get it over with now?
I haven't eaten and of the forbidden foods or been outside, or exposed to anything except indirect incandescent light without my Nois on.
I have an appointment to see my prescribing doctor in mid-February. I live in the country and the trip to NYC is difficult, so I need to be able to stand up for that. Also, I hope to have him prescribe for stage 2 when I'm there, even though I'll wait to actually start until you say that I'm ready. I sent the completed questionairre to Meg again.
I skipped my mino yesterday and can stand up today, but am still very weak and exhausted. It's fine, I'm not complaining - I believe you that this is herxing and a good thing for my future. My impulse is to continue at 87 mg. and get it over with. I'm concerned your instructions not to take more than 6 months for stage 1 (I'm at about 4 months already). But maybe it's not necessary or beneficial for it to be quite this hard.
My dream this morning had me drive over a cliff where I was fine but stuck on a large ledge with some other people who lived there, waiting for them to explain how to contiune to the other side of a harbour. They didn't look like you, but then I was healthy and driving.
I realize that we're each different so that you can't say for sure what will be best for me, but I'd like your educated opinion please.
Thank you, Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Posted: Fri Jan 21st, 2005 23:51 |
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Kathleen,
Your extreme symptoms may dictate that you stay in phase one longer than is optimal. Do not let that overly concern you though. Your goal now should be to maintain your dose of mino at a level where the Herxheimer symptoms are tolerable and safe. If bacteria develop that are resistant to minocycline, you can deal with them in phase two and three.
I applaud your determination. I hope you can find some resources so you can get supportive help when you need it.
Best,
Meg
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kathleen
member.
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Posted: Sat Jan 22nd, 2005 03:36 |
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Dear Meg,
Thank you for responding so quickly.
I'll try going back down to 75 mg. of mino tomorrow and see what happens.
I still wonder if people on the MP have a crisis that passes - might I be likely to hit this really hard part again if I stay at 75 mg. for a week and then try 87 mg. again? If so, this is the time to get it over with, while it's dark and cold out anyway and hibernating is relatively easy.
I wonder if the higher dose every third day would be more lethal to the microbes while allowing me to get out of bed than the lower every other day? I am absolutely not assuming to know more than you or Dr Marshall, and don't want to be a pain in the neck, arguing. It's just that I have noticed that the 1/2 life of many drugs is longer for me than usual though. I think that it's true for many people with CFS, which may be why many of us do better pulsing alot of things.
Next week I should be able to get a ride to the food store and library in the evening. The woman who should be able to help is away this week. So if I'm weak and my syncope is bad I won't sstarve or lose my mind without books to read.
Thank you, Kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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kathleen
member.
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Posted: Tue Jan 25th, 2005 00:00 |
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day 116 benicar, day 75 mino - back to 75 mg. for 3 days after a 3 day break from 87 mg.
I feel like such a total dope. Thank goodness someone posted the safflower oil question - I've been using sunflower oil. I will stop.
I don't think that the little bit of sunflower oil is responsible for my extreme symptoms though, because it's been a constant. 75 mg. of mino seems to have turned my body into killing fields. I took 87 mg four times and now have gone back to 75 to wait out the sleep/syncope problems.
I am trying no quercetin and it doesn't seem to make any difference at all. I'm still up until at least 6:00 am and then sleeping on and off all day. Not sleeping well any of the time, and so very weak and faint.
I did take 5 mg. of melatonin one night. but then waited and tried only about 1 mg. or less - a nibble from the tablet. I got the 5 mg. tablets because they were the only ones without alot of additional ingrediants. After a very bad week of not being able to stand up very much at all I think that I'm better off without sleep than I am with the melatonin induced sleep. I was dreaming all night long anyway, not getting any deep sleep.
I wish that there was a sleep med that would work for me, but I've tried most of them with bad results.
I still wonder if I shuld try the mino every third day. but for the next week I'll try 75 mg. every other day, and wait to see what people say about it. I have to be able to stand up to go to NY to see the doctors (Feb. 12), so I'll have to temporarily stop or reduce dose, or something if the syncope isn't somewhat better.
no giving up!!!
Kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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kathleen
member.
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Posted: Wed Jan 26th, 2005 01:32 |
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I got up and dressed and went out for the first time in a week. It was not easy and I'm extremely worn out and achey. But I do have food and the Sunday paper (held for me). I forgot my bank deposit. Thank goodness for the internet! I can transfer some $, and pay the rent, then pay myself back next time I can walk as far as the bank.
Still with the sleep - I was awake until somthing like 7 this morning and then slept until almost 4 this afternoon. And woke up feeling like lead.
I'm taking 75mg of mino for now, every other day. Any suggestions are welcome.
Should I ask my doctor if I can take more Benicar? If the sleep problem is herx, might that help?
Kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Reenie
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Posted: Wed Jan 26th, 2005 03:44 |
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Kathleen,
I know not sleeping at night can be a bother, but at least you ARE sleeping.
For me, my sleep patterns change and I try to just roll with it. Thank goodness, I can do that, since I'm too sick to do much else. 
If you feel your symptoms are intolerable, back the mino down to 50mg for awhile.
You can try to increase your Benicar to see if that helps, or try adding Quercetin again. I know for me, Q helps with my fatigue, but I'm further along than you are. I was able to manage my fatigue w/o the Q when I was in Phase 1 by ramping slowly.
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kathleen
member.
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Posted: Thu Feb 3rd, 2005 00:49 |
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day 125 Benicar, day86 mino - now at 62 mg.
I'm having a very hard time. I reduced my mino and feel the same. Which is extremely weak and exhausted, and fainting all over the place. I don't pass out, I would fall down and get confused if I didn't scoot down immmediately when I get the weird feeling.
If I didn't need to walk to get food and books, and if the food would cook itself and the dishes were magically clean this would be fine. However... I do need to be able to stand up and to walk.
I tried Benicar every 4 hours and I think that I was more faint. Now I'm trying 1/2 every four hours, and a full 40 mg. at night. I reduced to 62 mg. of mino and can't be sure of any difference from 87 mg. I don't feel worse on the day between mino doses - it's the same day in and out.
What about trying the mino every third day? Maybe I'd get that day off from herx, or at least a less difficult day. Or maybe stop mino altogether for a short while, which I would hate to do and have to start over. But I have to travel to NY in a week and can't Imagine dealing with the train and taxis....
Sleeping is still very bad. I'm trying going to bed earlier, turning off the light by 9:00. Even if it takes 4 or 5 hours to get to sleep I'll be resting and not sleep all day. I hope.
I've designed quite a few years worth of projects while lying awake in the dark - I sure hope that I'll get better and be able to work on them in a couple of years!!!!
I have some questions about phase 2 that I'll post in that section. I was certainly optimistic. Now I doubt that I'll be ready to start before April. Don't worry about my starting too soon. It sounds terrifying to me.
No giving up! Kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Aussie Barb
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Posted: Thu Feb 3rd, 2005 01:03 |
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Dear Kathleen
I'm so sorry that you are so symptomatic..
re your Qs: yes you can take the mino every 3rd day and it may be better than going off it altogether, symptomwise.. see how you go on that...
re Benicar dosing: when you halve the tablets (20mg) > according to MP guidelines you can take the 20mg Q3H during the day or even down to Q2H for symptom relief from herx or light exposure the herx.. you may find this a help to remember in your trip.. & to carry some Benicar with you in case of delays...
There are a number of FAQs re Benicar in the 2 pages of FAQs at MARSHALL PROTOCOL FAQ Answers to Frequently Asked Questions about the Marshall Protocol..
keep in contact as we are happy to help you, Barb ....
____________________
♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
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kathleen
member.
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Posted: Tue Feb 8th, 2005 18:04 |
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day 131 benicar, day 82 mino - now taking 62 mg. every 3rd day
I'm doing better taking the mino every 3rd day. My sleep is still terrible, and I have to be very careful with the syncope, but I can manage to walk for errands and to manage essential self maintainance.
I don't like taking so much more time to get to stage 2, but I do have to survive meanwhile.
I'm going to NY on Thursday for about 10 days, so I won't make any changes during that time. I have no idea how I'll manage, but somehow I will - I have to see the doctors and that's where they are. I'll also see a friend's new baby which will be very nice.
I'll write and ask when I get back and see how I feel, but I suspect that I'll want to increase my mino dose, but stick with the 3 day schedule and see what happens.
I've tried Benicar every which way and it doesn't seem to make any difference at all as long as I get one every 8 hours. I usually am pretty on schedule at 6 hours but sometimes sleep through. For now any sleep that I can get is so precious that I can't bear to set an alarm and wake up for a pill. Even when I've really slept through and gone 10 hours without a Benicar (once or twice), I've felt better then when I haven't slept.
I tried eliminatiing my magnesium and that was bad, so I'll be sure to take it 3 hours away from the mino and try to stop again some time in the future.
I'll bring my prescribing doctor the stage 2 info so that he can read it and be ready to prescribe some day when I get up to 100 mg. of mino and start to sleep again. I seriously cannot imagine when that might be.....
Kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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