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desertlily
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| Joined: | Mon Oct 4th, 2004 |
| Location: | Mesa, USA |
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Posted: Fri Nov 5th, 2004 17:44 |
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This is my first post in this section, I was in the Benicar & antibiotics section, but I have now added Quercetin.
I gradually increased the dose of Quercetin and am now at 400mg 3 times a day, I'll probably go up to 4 times a day tomorrow.
I had restarted the mino on 11/1 at 6mg (had been on 25mg and did terribly), and was on it for two doses. I still am herxing too hard and so today I went down to 3 mg, so we'll see how this goes. I probably would have stayed on the 6 mg and just toughed it out, but I started getting migraines again last night (day after 2nd dose of 6 mg) and am exhausted today. So, I figured that was a sign I was pushing my body too hard.
Later. Moderators Note: These low Mino doses are no longer recommended.
Anyway, just wanted to update where I was, am a little discouraged today by my progress, but maybe I was just overly optimistic about what I could tolerate.
Am still trying to be a good cave dweller - the only thing I'm not doing is using the light NoIR glasses inside, but am using regular sunglasses when I use the computer or watch TV. Would this be ok?
-Susan
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CFIDS/FM for 4 years. Started Benicar 10/1/04. Started Mino 10/17/04. Meds: Benicar 40 mg q 6 hrs, Mino 3 mg , Quercetin 400 mg, Ultram. Klonopin 1 mg & Doxepin 5 mg for sleep, progesterone cream. 10/1 Vit D:1,25D-40, 25D-42. 11/1: 1,25D-35, 25D-43
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Reenie
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| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Fri Nov 5th, 2004 18:19 |
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Hi desert,
If you still feel like you're experiencing strong sxs on the 3mg, such as migraine, I would suggest you stop taking Quercetin and assess your light exposure. I know you say you're "trying to be a good cave dweller," but this may not be enough. 
This may sound harsh, but trying and doing are two different things. If you don't do a good enough job of cave dwelling for the first couple of months, you may feel too awful to make much headway.
Quercetin can make you feel worse rather than better, if you've gotten too much sun. 
Take a look at my recent post, to George, HERE.
The good news is... we become more light tolerant as we get further along on the MP.
As for the sunglasses in the house, make sure you get the darkest possible shades you can find, preferably an amber color or blu-blocker lens. 
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desertlily
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| Joined: | Mon Oct 4th, 2004 |
| Location: | Mesa, USA |
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Posted: Tue Nov 9th, 2004 20:05 |
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Another update:
Today is my third dose of mino at 3 mg. I took my first one last Friday and I seem to be tolerating it fine. Mild to mod herxing, especially on the day after the dosing. Mostly symptoms include, fatigue, flu-like sxs, joint and muscle pain. Did have one day of numbness down my right leg, which is usual for me when I flare up. BP sxs are mild to mod and tolerable.
I took Reenie's advice to heart and have been reexamining where I might be getting too much exposure. I'm not going out at all during the day now, unless absolutely necessary and then I have the hat, gloves, dark NoIR glasses, etc. I've ordered the lighter NoIR glasses for inside and am for now wearing my regular sunglasses in the house at all times (I wasn't that consistant before).
My latest Vit D levels are:
11/1/04: 1,25 - 35 and D25 - 43.
1st results: 10/1/04 - 1,25 40 and D25 - 42
My question is, should I increase my mino dose to 6 mg since I seem to be doing ok at this point, or is there some method to ramping up the dose?
Anyway, so far, so good!
SusanLast edited on Tue Nov 9th, 2004 20:09 by desertlily
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CFIDS/FM for 4 years. Started Benicar 10/1/04. Started Mino 10/17/04. Meds: Benicar 40 mg q 6 hrs, Mino 3 mg , Quercetin 400 mg, Ultram. Klonopin 1 mg & Doxepin 5 mg for sleep, progesterone cream. 10/1 Vit D:1,25D-40, 25D-42. 11/1: 1,25D-35, 25D-43
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Reenie
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| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Tue Nov 9th, 2004 23:57 |
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Hi desert,
Glad to hear you're doing well.
The strategy that worked well for me starting out that low, was, I stayed at each dose until the herx waned. If your herx continues at that dose, I wouldn't increase it yet. If I hit a dose that I didn't herx at all, I increased the next dose, or sometimes took two doses at that level, if I wasn't clear on it.
Keep us posted.
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Posted: Sun Nov 14th, 2004 06:18 |
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Hi Susan,
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.
Your continued high 25-D suggests that you are not avoiding foods high in Vitamin D and/or Vit D supplements. Please take a careful inventory of everything that goes into your mouth. You need to get this number down so that you are not supplying your inflammatory tissues with the 'fuel' to produce too much 1,25-D.
Best,
Meg
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desertlily
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| Joined: | Mon Oct 4th, 2004 |
| Location: | Mesa, USA |
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Posted: Sun Nov 14th, 2004 22:54 |
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Thanks for your response Meg - I looked up the list of Vitamin D foods and went over it again to see what I might be doing wrong. I found a few, like I forgot mayonaise had eggs in it And I've been trying to check labels on everything I eat. I also made sure my vitamin has no vitamin D in it. So while I see some area for improvement, I think I've been following it pretty close.
It seems like I read somewhere that it takes awhile for that 25-D number to come down even if you aren't taking in Vitamin D. Is that correct?
Anyway, thanks for giving me more to think about and check into, there really is a learning curve on all of this.
I have definately noticed that I've done a lot better just staying indoors during the day. Even if I go out completely covered, I have had sxs either that evening or the next day. So, now it's only doctor's visits and church! -Susan
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CFIDS/FM for 4 years. Started Benicar 10/1/04. Started Mino 10/17/04. Meds: Benicar 40 mg q 6 hrs, Mino 3 mg , Quercetin 400 mg, Ultram. Klonopin 1 mg & Doxepin 5 mg for sleep, progesterone cream. 10/1 Vit D:1,25D-40, 25D-42. 11/1: 1,25D-35, 25D-43
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Mon Dec 6th, 2004 19:31 |
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| Hi Susan, how are you? Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Reenie
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| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Mon Dec 6th, 2004 21:08 |
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Hi desert,
Would you kindly update your sig line with your D test results? Thanks
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desertlily
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| Joined: | Mon Oct 4th, 2004 |
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Posted: Mon Dec 6th, 2004 22:34 |
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Thanks Barb for asking. I've been doing ok. I had to go off the mino for the week of Thanksgiving, we had lots of family here and I knew I couldn't handle both. I noticed that while I was off the mino, my pain seemed to be better, but because I was overdoing it my flu symptoms were huge (fatigue, muscle aches, chest burning, cough, etc).
I restarted the mino on 12/1 at 3 mg every third day (two days off between doses) as per my NP's instructions. So far I've been doing ok on that, generally herxing on the 2nd and sometimes 3rd day, but usually better by the time for the next dose comes around. I'm not having the problems with blood pressure sxs to the degree I was before. My symptoms generally involve fatigue, mild to mod flu sxs, muscle and joint pain and mild-mod brain fog. Overall, tolerating things pretty well.
I know that Meg was saying that the consensus was that the lowest we should be starting at was 12.5 mg. I'll be seeing my NP this week and I plan on discussing this with her at that time.
Oh, one other thing, I went through about a 2 wk period, where every morning I would wake up with a bad sinus HA. I didn't have a lot of drainage or stuffiness and I tried everything with little success. Finally one day it just stopped. Anybody have problems like that?
Thanks for your help! -Susan
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CFIDS/FM for 4 years. Started Benicar 10/1/04. Started Mino 10/17/04. Meds: Benicar 40 mg q 6 hrs, Mino 3 mg , Quercetin 400 mg, Ultram. Klonopin 1 mg & Doxepin 5 mg for sleep, progesterone cream. 10/1 Vit D:1,25D-40, 25D-42. 11/1: 1,25D-35, 25D-43
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Wed Dec 8th, 2004 12:53 |
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Dear Susan,
That's good that you are managing all well.. I am wondering if the headache coincided with more work or more light exposure than usual over the holidays and the recovery time after? that would seem fairly normal to me.
Keep in touch with how you go.. thanks for posting, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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