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kathleen
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Posted: Tue Nov 9th, 2004 23:22 |
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I added 6 mg. of mino today, after 40 days of just Benicar and quercetin.
Later. Moderators Note: These low Mino doses are no longer recommended.
My most noticable symptom changes with the Benicart have been improved sleep and digestion (still bad), but also much worse fainting along with the lowered BP. My BP has been abour 65/50, down from more like 100/60. My cardiologist agreed that since the fainting is not new, just a more frequent result of my dysautonomia, it's probably because I'm closer to the threshold with the lower BP. It's not out of the blue, just whenever I get up from lying or sitting with my feet up. I'm very careful, so it's annoying but managable and safe.
About 2 hours after taking the mino I felt terrible. What was worst was cognitive, which means that I can't describe it well. I took 1/2 of my afternoon Benicar and quercetin early and after about 1/2 hour I felt somewhat better. I took the other 1/2 on schedule and am back to status quo.
I have no need to define my reaction as herx or something else - I'm just waiting to see how I'll feel tomorrow. I'll leave the analysis up to you. My job is to follow the protocol as closely as possible and be careful about falling down.
The only thing that I still need to take that I am aware is a problem is magnesium. I tried going without, but it was a serious disaster. My doctor said to just keep it 3 hours away from the mino. I'm aiming for more like 8-10 hours. I'd really like to be 100% compliant, and hope that even with the mag on the same day the mino will manage to kill enough pathogens to be a success and that then I won't need the mag anymore.
I take oral magnesium glysinate, plus .5 cc mag for sleep and jumpy legs and to relax (extreme) overall physical tension. I also meditae every day and soak and it's not enough, without the mag I really can't function (for now).
I'm a little bit nervous, but more optimistic and hopeful now that I'm starting on the first antibiotic!
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 Nov 9th, 2004 23:40 |
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Hi Kathleen,
Do you add salt to your diet since the Benicar and drink more water? This may help w/your fainting since you may feel better by making up the difference in sodium that's wasted as a result of Benicar. It may help to keep your metabolites a little more in balance.
My bp is very low w/o the Benicar and it's not affected by it much, although, when I'm herxing, my bp drops some.
I was at the Drs office yesterday, and the MA took my bp twice to be sure she read it right. It was about 92/60. I wasn't feeling very well and it was about 16-18hrs past my mino dose, so I think it was due to herx sxs.
When I take my bp at home, it's as low as 70's/40's, but I don't pass out.
Last edited on Tue Nov 9th, 2004 23:44 by Reenie
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kathleen
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Posted: Wed Nov 10th, 2004 21:56 |
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Thanks for your help. Unfortunately for me, salt doesn't help raise my BP at all. It even seems to make it worse. I know - another impossible symptom.
I'm prepared to deal with the fainting. It comes and goes, not always exactly in sync with the lowest BP. Hopefully the dysautonomia is a symptom of my infection, but it could be an independant problem. I was at the NIH a few years ago as part of a study on falling down, and my norepinephron levels were so low that they wondered how I ever maintain enough BP to stand up. Obviously something is compensating in the massive hormone confusion that is my (and many people with CFS... ) life.
I'm only concerned about taking the magnesium. However, less concerned since I felt totally toxic this morning which I assume/hope means that the mino killed something, I have to wait a few days to take the next dose because I'm close to running out of Benicar, and with the holiday I don't trust shipping dates. I'll try to get a few extra out of pocket if my doctor is in tomorrow, but I don't want to take mino without having plenty of Benicar on hand.
I'll report after my next dose of mino.
Thank you again, 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: Thu Nov 11th, 2004 02:00 |
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Kathleen,
I just want to clear something up, for those that will read this, and you. 
I was not suggesting that an increase in salt would raise your bp, however, increasing your sodium intake would help to offset the excess loss of sodium w/Benicar use. By keeping your electrolytes more stable, IMO, you may feel better.
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kathleen
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Posted: Fri Nov 12th, 2004 00:59 |
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Dear Reenie,
I know alot of people whose BP actually does increase with salt intake, they hold water in their system in a way which increases blood volume. Unfortunately for me, all of the water ends up somewhere in my belly causing bloating and I feel worse.
Just in case this has changed since I started taking Benicar I tried a few delicious salty foods. I felt worse as usual. Hopefully this is something that will normalize eventually.
My BP was higher today and I actually totally fainted for the first time. Go figure, as trevor says, the two things are not always cause and effect.
I still feel pretty awful (Thursday evening) after taking 6 mg. of mino on Tuesday. I may wait until Saturday to take another dose, or If I feel a bit better in the morning I'll take on then. It's between every 3rd or 4th day, which will have to be OK to get started. I hope that I can take doses closer together soon.
Thank you for both your suggestion and clarification, 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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Posted: Sat Nov 13th, 2004 17:30 |
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Kathleen,
The research team has been having a lot of discussions about the best starting dose of minocycline. We've concluded that because minocycline works best as the concentration decays down to zero, it is better to start dosing at a minimum of 12.5mg. 25mg has been the recommended starting dose and sarcies have done well on that. We have learned that the CFS patients who reported adverse reactions on this starting dose and then even with tiny doses, were not avoiding sunlight. We've concluded that their symptoms were not due to a Herxheimer reaction but caused by a flare in 1,25-D due to the sun exposure.
Taking tiny doses of minocycline also keeps the concentration down to the level where it works the best and may account for reports of continued difficulties with minocycline. Anecdotal reports indicate that patients who are diligent about avoiding sunlight/bright lights tolerate the waxing and waning of Herx symptoms best at doses of 25 mg and higher.
With this in mind, I suggest you alter your plan to continue on only 6mg. Be sure to let us know how you get along.
Best,
Meg
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Jill
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Posted: Sat Nov 13th, 2004 20:06 |
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Hi Meg,
You just posted
",,,start dosing at a minimum of 12.5mg. 25mg has been the recommended starting dose and sarcies have done well on that.."
I'm still herxing on 6.25 mg of mino. I'm very diligent about avoiding light (e.g. ski mask outside, even on cloudy days, dark glasses almosst all of the time even indoors)
Does this recommendation mean that your team believes I'd do better if I upped it to 12.5 mg now? (I've already increased quercitin , benicar, pain meds). Main problem is severe pain, so I'd sure like to avoid that, and maybe speed up this process if it is advised.
thanks for clarification.
Jill
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CFIDS20yrs, hypothyroid,iritis, neuropathy, hip joints; 9/11/01 25D32, 1,25D74
benicar 9/11/04 @40/6hr; mino start 10/20/04, now@50mg.
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Posted: Sun Nov 14th, 2004 03:29 |
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Jill,
Yes, we think you'd do better on at least 12.5 mg every other day. Your situation fits the situation described in this previous paragraph:
Taking tiny doses of minocycline also keeps the concentration down to the level where it works the best and may account for reports of continued difficulties with minocycline. Anecdotal reports indicate that patients who are diligent about avoiding sunlight/bright lights tolerate the waxing and waning of Herx symptoms best at doses of 25 mg and higher.
Best,
Meg
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Posted: Sun Nov 14th, 2004 07:29 |
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Kathleen said,"I take oral magnesium glysinate, plus .5 cc mag for sleep and jumpy legs and to relax (extreme) overall physical tension. I also meditae every day and soak and it's not enough, without the mag I really can't function (for now)."
Kathleen,
That is an appropriate use of a supplement. It's has an obvious effect at symptom relief which you cannot do without right now. As long as you don't take it close to a dose of other meds to avoid interference with GI absorption, it shouldn't interfere with your progress on the MP.
Best,
Meg
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kathleen
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Posted: Sun Nov 14th, 2004 23:31 |
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If I'm understanding properly, you think that I'd feel better if I increase to 12.5 mg. of minocycline from 6 mg. right away, before I stop feeling worse? I'm willing but nervous.
At 6 mg. of mino twice so far, with 2 days in between I'm feeling pretty bad. I had planned on taking 6 mg. again tomorrow. I can function and deal with it, but feeling even worse would be very difficult. I'm used to the Benicar larger dose making things easier idea, but had (misunderstood?) the the mino was more ordinary, and that .6 mg. was enough to start with, until stabalizing, and then increasing.
I'm being very religious about only going out after dark, and wearing the dark Noir if I need to go out earlier, and the lighter ones in the house for TV and computer. My windows are all coveres. I need night lights just to get from room to room without banging into things.
I'll ask my doctor for a prescription for the K cream when I see him soon.
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: Mon Nov 15th, 2004 03:02 |
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Kathleen,
Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero. Taking tiny doses of minocycline is not recommended because it keeps the concentration down to the level where it works the best and may account for intolerable Herxheimer reactions. Some patients report intolerable Herxheimer symptoms that continue even after minocycline is discontinued, apparently in response to the immune system staying 'turned on'. When Herxheimer symptoms are intolerable the patient should take minocycline 12.5 every 12 hours or 25mg every 24hrs. This dosing schedule seems to ameliorate the Herxheimer reaction because the dose of mino is maintained at the less effective level.
Using this dosing schedule until Herxheimer symptoms are again tolerable, you can then begin spacing out the doses so that the concentration is allowed to decay to maximum therapeutic levels. The immune system will begin to kill bacteria again. But anedotal evidence indicates that patients can tolerate the waxing and waning of Herx symptoms much better when taking minocyline at doses of 25mg and higher.
I know it seems counterintuitive but you'll have to trust us on this one. Aussie Barb is currently doing this and feeling better. Here is her progress report.
Best,
Meg
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kathleen
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Posted: Mon Nov 15th, 2004 04:31 |
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Thank you for replying so quickly. I've put out 12 mg. of mino to take with my early morning Benicar and Q.
Taking the mino early morning leaves plenty of time before my (much) later breakfast with oral magnesium, and it's about 10 hours after my PM mag shot. Also, I have all day to recover, so that I have the best chance of sleeping that night.
I see that some people take their mino at night, but haven't noticed a reccomendation.
I'll report soon,
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
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Posted: Tue Nov 16th, 2004 23:34 |
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OK, I was brave and trusting and went ahead and increased to 12 mg. of mino on Monday morning. Lo and behold, I don't feel very different. I'll take 12 mg. again tomorrow morning.
One new symptom has developed. It's not a problem, just weird for me. I'd guess that plent of people have experienced it. The fronts of my thighs are totally sensative. Even soft sweat pants or flannell sheets feel like sandpaper. It's not enough pain to affect my sleep very much, so I expect to just write it down in my MP book, hopefully not fo too long.
I'm not having very many specific easily described symptoms. Mostly I'm (almost) fainting alot and am especially weak and slow, and a bit achey. Sometimes chewing feels like a really big job. My brain has forgotten that it isn't a slug. I have to check myself many times, because I'm making alot of really ridiculous mistakes. All of which is managable. Not having any major new pain is wonderful. This I can live with, hoping that it all means that pathogens are dying.
I guess I wonder when I should try to increase from 12 mg. of mino to 18 or 25? I have to travel to NY on Saturday and then have appointments while I'm there. On the other hand, it's always something. Like Christmas - yikes.
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: Wed Nov 17th, 2004 00:41 |
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Hi Kathleen,
Remember, you can always take a few days off from mino, if you need a break from herxing to feel better.
IMO, I would stay at 12.5mg for a week or longer, to see if the herx wanes.
Be aware, if you're going to be out much, you may feel like you're herxing more due to light exposure. I don't know how much cave dwelling you're doing now, but I'd imagine your excursion on Saturday will give you an increase in exposure.
I increase my daytime Benicar from q6h to q4h, then drop back to q6h at night, to prevent the sxs from the increase in light. You may want to try this, w/Dr's approval of course.
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kathleen
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Posted: Wed Nov 17th, 2004 21:02 |
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Reviewing Meg's post #757, about more mino resulting in less herx, I wonder if I should go right to 25 mg.?
What I'm experiencing isn't intolerable, but it's extremely difficult. If I just lay in bed and read, it would be fine. However, I need to shop and cook or starve to death. And I'd like to keep some indoor activities, so that I don't get bored and sad.
So maybe .25 mino every other day will be better for me than .12? I do realize that experimenting will be the only way to know for sure.
There's nothing new after my 2nd dose of .12 - just a demeted brain and small aches and weird surface pain on my thighs, which is much worse when cold.
OK - it's 5:00 and dark, I can go out for my walk.
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: Wed Nov 17th, 2004 21:48 |
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Hi Kathleen,
Are you constantly feeling badly, or mainly on the day after dosing? You may want to try to skip a day and see how you feel, taking it every third day for now. This will help you determine how you're feeling when the mino is out of your system.
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kathleen
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Posted: Fri Nov 19th, 2004 23:20 |
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Me again.
Yes, I'm feeling pretty much the same every day. Not too good.
I took 12mg of mino on Wed and 25 mg on Thursday, none today. I might feel a bit worse, but I'm stressed packing for my 2 weeks away in NYC, and I didn't sleep well. That would account for my feeling more worn out.
The weird surface pain on the front of my thighs isn't lessening. It's not unbearable at all, but it does disturb my getting back to sleep in the morning. Advil seems to help, and the latest posts seem to say that it's OK to take. So if there's no objection I'll take an Advil when I wake up for my early morning Benicar and Q. Is there any information about this type of pain as a herx? I sure hope that it will go away eventually.
I'll be away from internet access for 2 weeks, starting tomorrow afternoon.
I'll get the K cream for my lower face, because I'll have to be out during some days. I'll be all covered otherwise. I need to go and see the Rock Ctr tree, Saks windows, and the new Museum of Modern Art. All in the evening. It's so nice now that it's almost dark by 4:30.
I'll stay at 25 mg of mino every other day unless I feel too terrible, and then try either every day, or taking a break. My guess is that I'll manage on every other day dosing.
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: Sat Nov 20th, 2004 04:25 |
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Kathleen,
Almost any kind of pain can be due to a Herxheimer reaction. The pain in your thighs sounds pretty typical. My aching leg woke me up this morning.
It sounds like you have planned well for your trip. Have a great time.
Best,
Meg
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kathleen
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Posted: Tue Dec 7th, 2004 23:52 |
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HI, I'm back from 2 weeks in NYC. I am worn out, but it was great.
My vit D25 is down to 34 from 44. I think that it's not as low as would be best, but I was taking alot of supplimental D for a long time so hopefully I'm not injesting any hidden D, it's just taking a while for the stored D to leave my body.
I noticed a dramatic difference in my sensativity to light. Yuk. I went to a museum but even with the Noir glasses I had a dramatic reaction to the bright hologen lighting. I was very faint and had to get out asap.
Outside in the afternoon in the cloudy fall weather with the Noir I felt fine. I had the K cream on my lower face and was totally covered otherwise. That was better than after dark, when the headlights and street lights were a big problem.
I wonder exactly how to use the cream. I put it on before I went out, and reapplied if I was in and out. How long is it active? And should it be applied before or after light exposure?
I seem to be less fainty, but my BP is lower - 53/32 (twice). Go figure?
I plan to increase my mino to 37 mg. tomorrow morning.
I haven't been able to catch up with the website yet, but will read some each day.
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: Wed Dec 8th, 2004 03:52 |
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Kathleen,
The use of Ketoconazole cream is so new that we don't have any firm guidelines on its application. I think if you apply it sparingly only to unavoidably exposed face and neck once or twice a day, you shouldn't be getting too much. I don't know how long it is effective (I'm guessing a couple hours) but I hope that you are not staying outdoors that long to find out! 
Best,
Meg
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