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amypea
Member in Phase 3
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Posted: Wed Dec 12th, 2007 22:47 |
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Hi!
Just checking in after a few weeks. Sorry was out of town. No news. Doing well. Not herxing much anymore although generally do not feel great on antibiotic days.
I am in law school finals and I must say that I have never approached final exams as calm as I am right now. I used to become agitated, irritable, sleepless, nervous and explosive during finals. I also used to break out in acne terribly during finals. This is all not happening which has also made me realize that I have had significan emotional improvements since starting the MP. I do not recall being as happy and up spirited as I am feeling now. There has been a considerable emotional improvement.
Otherwise, my need for the progesterone has decreased. I take it every other day now instead of every day. This is good news. Maybe that is a sign that my fertility is kickign back in?
Still avoiding D. Not wearing NORI because not outside during daylight and no photosensitivity except occasionally. Reduced Benicar to 3 times per day because of side effects from it. It caused severe dizziness, palpitations and blackout episodes. Also was gaining a lot of weight and my thyroid meds were not helping me. Got my period once I cut back the Benicar. So, I think too much of it was causing hormonal problems.
Cutting back to 3-4 times a day (4th time is if I wake up) has really helped me. I feel terrific on my days of minocin. I have also found that my days on minocin are less problematic if I take my anti-yeast supplements which includes 5mg of Biotin and some cellulace (amino acid I think). I am not really sure why these supplements are helping me but they seeem to control the immune response for me. If the immune response gets bad, I pop another dose of the minocin and that helps.
Still notice that any herxing takes place at about 9PM. It is strange but I never need to take metoprolyl during the day. At night, when the immune response kicks in, I need metoproly, Benicar and a dose of minocin to stop it. Herxing is rare now.
Am I ready for phase 2?
Do I have to go back up on the Benicar or can I take it 3 times a day? I only weigh 108. Does that make a difference?
All other meds same as last report except that Benicar cut to 3 times per day and progesterone cut to every other day.
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Posted: Fri Dec 14th, 2007 05:00 |
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It's important to maintain the Benicar blockade of 40mg every eight hours or its equivalent. Body weight is not a factor.....dose is dependant on bacterial load. Reducing the Benicar frequency must have resulted in less activation of the Vitamin D Receptor and, thus, your symptoms were reduced. It's not Benicar that causes the symptoms (only indirectly), it's the disease process.
I can't tell how much minocycline you are taking. Please use the standard reporting format so we don't have to ask for clarification.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Plan:
Questions:
It's wonderful to hear about your improvments. I noted you are getting a fair amount of natural light exposure that may be increasing your symptoms and the need for extra Beni or mino. You may reduce symptoms and have an easier time in phase 2 if you can eliminate all avoidable daylight outings and cover up well and wear NoIRs when you do have to go out. See Why does exposure to natural light increase symptoms? and Do car windows, cloudy skies or geographical location affect the amount of sun exposure? and Testimonials to the need to avoid light.
Before you leave phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms.
You could also try taking lower-dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit and could come in handy in the future if symptoms become intolerable and you need to adjust MP meds to manage immunopathology.
Let us know how it goes...........
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amypea
Member in Phase 3
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Posted: Sat Jan 5th, 2008 04:44 |
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Happy New Year!
Still feeling pretty good. I have altered the minocin to treat palpitations and need it every night or I am very uncomfortable. Is that normal? Without it I herx and get palps. You mentioned that the minocin can have an anti-inflmamtory effect and I can tell you that is ABSOLUTELY the case with me. I must take it every day or I feel body pain and palpitations. Taking extra Benicar makes me feel worse. I get tired and feel like I have the flu when I take extra Benicar. I also get bad blacking out and feeling dizzy with extra Benicar.
The only downside right now is that my thyroid does not seem to be improving whereas everything else does seem to be improving. Should I increase the minocin? It seems to be what my body wants. If so, how much? How often? The minocin is the only thing that helps the palps. Am I ready for phase two?
Best,
Amy
MP meds: Minocin 25mg daily. I seem to get very bad heart palpitations now if I am not taking the minocin every night at the same time, 25mg. If I am even an hour off, I get bad palps, sweating and chest pains. So, I need it every day now.
Benicar every 8 hours like you said, the 40mg. 120mg per day.
I wear the NORI glasses in the daylight but not on computer and at home because they annoy me.
Avoiding Vitamin D foods.
Palliative meds:
500mg levoxyl (thyroid hormone resistance)
250 mcg time release T3 (thyroid hormone resistance)
50mg of metoprolyl
Lunesta 3mg
Flexeril 20mg
Hydroxyzine 20mg
Prochieve 8% every other day
Biotin 5mg daily
Cellulase (vitamin) daily
Light exposure: Avoiding. I think I need to avoid more.
Symptoms: Just palps if do not take minocin every night. Also light sensitivity. I feel my health is improving steadily. I am really happy.
Plan: Want to move to phase 2 or take more minocin.
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Posted: Sat Jan 5th, 2008 06:42 |
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Amy, you need to find a way to progress to using minocycline every other day so it helps the immune system kill bacteria. Taking it every day is palliative, not curative.
Recommend you try again to increase the interval between doses. Until you can do that, you are not ready for phase 2. You can increase gradually by the hour, if necessasry.
Please clarify: "Light exposure: Avoiding. I think I need to avoid more." Are daytime outings unavoidable? Are you working? You may not be able to continue on the MP, if you are unable to avoid natural light exposure.
Let us know what is happening...........
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amypea
Member in Phase 3
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Posted: Sat Jan 5th, 2008 21:37 |
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Hello,
I am avoiding daylight and wear glasses when outside. I need to try and wear them more often inside and on the computer. I forget inside because I am not bothered by the light but outside I realize I need the glasses because the light bothers me. I wear them when in the car and at the window. I will try to go back to every other day on the minocin. Perhaps I can increase the Benicar and this might help with the palps on the off day. Do I stay on the same dose of minocin and just skip 2 days between doses?
Best,
Amy
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Posted: Sun Jan 6th, 2008 01:22 |
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We still need more details in order to help you progress.
Have you darkened your house to 30 lux or less?
How often do you go outside during the day?
How long do you stay outside?
Are these outings unavoidable?
Do you cover up from head to toe when you must go outside during the day?
Are you exposed to sunlight at work or school?
Which sunglasses (NoIR, Bolle100, Oakley or Zeiss) are you wearing? List all and be precise.
If you have palpitations, you cannot say you are not bothered by light exposure. Please review Why does exposure to natural light increase symptoms? and Do car windows, cloudy skies or geographical location affect the amount of sun exposure? and Testimonials to the need to avoid light.
Benicar 40mg every eight hours is the minimal blockade and can be easily lost if a dose is delayed. Recommend you increase to every six hours. See Benicar dosage and schedules.
Do not increase Minocin. Try to extend the interval between doses gradually until you are taking it every 48 hours.
The recommended first step when symptoms are intolerable is to take an extra oral 40mg Benicar 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 intolerable symptom/s persist, increase oral Benicar to every three or fours hours around the clock (set an alarm if needed). 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.
If you are out and about as much as I think you are......you are going to have a very difficult time progressing on the protocol and curing, rather than palliating, your RA. As it is, you are not on the Marshall Protocol.
Please let us know what is happening so we can help you......
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amypea
Member in Phase 3
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Posted: Mon Jan 7th, 2008 04:30 |
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Okay. Got it. I am taking the 25 minocin every other day. I am taking Benicar 40mg every 8 hours. If I get the palps or herx on the day off the antibiotic what do I do? Adding more Benicar does not seem to help palps all the time so sometimes only adding another dose of minocin helps. But if I do that, I end up on minocin more often than the protocol requires. I am moving back to the every other day routine but I am unsure what to do if I get a palp or herx on the day off minocin.
I have always been on the Benicar religiously 3-4 times a day and have not missed a dose. It is the herx that I am having trouble with. What do I do with the minocin if I herx on my day off or even later in the day when I take my minocin? Can I add another dose?
We still need more details in order to help you progress.
Have you darkened your house to 30 lux or less?
No. My house is dark already but I do not know how dark.
How often do you go outside during the day?
Rarely. Just to go from the house to work and work to the house.
How long do you stay outside?
Just a few seconds.
Are these outings unavoidable?
Yes.
Do you cover up from head to toe when you must go outside during the day?
Yes.
Are you exposed to sunlight at work or school?
No.
Which sunglasses (NoIR, Bolle100, Oakley or Zeiss) are you wearing? List all and be precise.
Just NoIR and just during the day light hours or in bright room. I wear them in the car also. I suppose I must wear them more often. Even at night? I really do wear them most of the day and leave them off at night.
I really am not out and about. I work during the day in an office without a window so the only light exposure comes from my computer and office light. I go to school at night and sometimes I wear my glasses if the room is bright. I have no exposure to day light except in the car for roughly 2 hours a day and I block it out with the sunglasses.
I feel like I am progressing but I have been taking too much minocin because instead of Benicar I have been using minocin to manage herx.
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Posted: Mon Jan 7th, 2008 09:26 |
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Thanks for clarifying your natural light exposure. Unfortunately, Car windows and sunscreen do not shield you from natural light. Two hrs/day of driving may be provoking your palpitations. Cover up as well as possible, wear your NoIRs faithfully and increase Benicar in anticipation of symptom increases.
"I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing." ..Trevor.
Folks who must continue to work despite significant Th1 inflammation have a difficult balancing act to maintain. You will need to be extra diligent in order to keep minocycline at every other day dosing to kill the bacteria and recover your health.
Remind yourself periodically of the personal strength that brought you to this point in your recovery and resolve to persist against all odds.........
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amypea
Member in Phase 3
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Posted: Tue Jan 8th, 2008 23:55 |
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YOU WRE RIGHT!!!!!
I felt so terrible last night when I was driving. I thought I was going to crash my car. So, I put a pair of sunglasses under my NORI sunglasses and within about ten minutes my symptoms decreased significantly. Then I took them off and within ten minutes the symptoms were back. I did this a few times and was amazed that, in fact, the evening lights from the surrounding cars were making me feel ill even though it was dark outside.
Apparently, my problems are related to the lights. You are right. Today, I turned off all the lights in my office and am wearing my sunglasses while on the computer. It is making a huge difference in how I feel and in my herxing. I am driving with two sets of sunglasses on top of each other and a baseball cap.
I need new sunglasses. Can you tell me what model number I should buy? There are so many NORI out there. I think I bought the wrong ones. I need more light blocked out.
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Posted: Wed Jan 9th, 2008 00:24 |
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It's great that you have solved this problem by going back to basics and diligently protecting your eyes.
NoIR ordering info is here. The type you get will depend on if you wear prescription glasses also. Call the NoIR rep.....they can help you if you are undecided about style. You should have both 2% (darker) and 10% (medium) for outdoor and indoor used.
Good job...........
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amypea
Member in Phase 3
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Posted: Sun Jan 13th, 2008 23:50 |
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Hello,
I am on full time sunglasses now. I have them on in the lights and in the dark. I have noticed that the worst photosensitivity for me is not during the day inside but rather at night when I am on the highway. Lights galore causing headaches and visual disturbance. I have three new pairs of sunglasses and they are totally cutting back the herx.
I have been taking 50 mino every other day and the Benicar is 3-4 per day (120-150). The first few days of the week Mon-Wed were filled with cardiac symptoms. It got better through the week. I was able to work out twice this week and feel good. Antibiotic day is rougher than the day off. The day off antibiotics I feel like I am boundless with energy. I have been able to drop my thyroid medications without problem.
Interestingly, by Friday of this week, I was having thyrotoxic symptoms which means that my thyroid is improving. I cut back on Saturday and Sunday to 400 T4 and 210 T3. I was taking 500 T4 and 250 T3 before this.
Returning to exercise has been wonderful. At the beginning of the Marshall Protocol, I could not exercise. I would feel like I was gonna pass out. The last two weeks, I have exercised twice per week with no body pain or intolerance.
I feel really great! But as soon as I take those sunglasses off, I start to feel like crap again. I cannot get over the power of light avoidance to feeling well. What a difference.
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Posted: Mon Jan 14th, 2008 02:41 |
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Amy, your post made my day...... I'm glad you've got better control of your symptoms so you can progress to a cure.
It's not a good idea to change thyroid meds without lab confirmation. See Thyroid supplementation on the MP
Exercise can have a negative effect. See Are there any guidelines on exercise during the MP?
It's always best to ask first, before you take any action that is unfamiliar to you......
Please use our new reporting format. This provides a 'snapshot' of your current situation so we can provide an accurate response. It's important that you include all the basic information in your report so we don't have to ask for clarification.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Plan:
Questions:
Try to keep the Benicar blockade up by taking Benicar every six hours.
Congrats on ramping to 50mg every other day! Let us know how it goes.............
Last edited on Mon Jan 14th, 2008 03:03 by Foundation Staff
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amypea
Member in Phase 3
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Posted: Wed Jan 16th, 2008 17:54 |
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Hello,
The last two nights, at the same time each night (10PM) I have experienced frightening cardiac herx. It has been so bad that my pulse has been 180bpm. I felt like I was having a heart attack. Increasing Benicar did nothing to help. Taking it under the tongue did nothing and taking an extra dose of minocin did very little (may have helped a bit). I think increasing the Benicar dose has not helped and may have even made it a bit worse. Adding the extra dose of minocin may have helped a bit but then it throws me off the MP schedule of every other day. What do I do? Do I decrease everything again and go back to Minocin every 8 hours and Benicar 25 every other day? I have looked through the web site and it appears several other people have experienced this. One of your members suggested that she increased minocin to every day instead of every other day until the cardiac herx stabilized.
These cardiac herxes are very scary and judging by the way they feel, they must be very dangerous. Even advil did not help. Both nights, the herx ended about 1AM but from 10PM-1AM I thought I was going to die.
MP meds: 40mg Benicar every 8 hours, Mino 50mg every other day
Palliative meds: T3 210mcg, Levothyroxine 500mcg, Metoprolyl 50mg, Lunesta 3mg, Flexeril 20mg, Hydroixyzine, 8% progesterone every other day
Light exposure: Limited. Wearing sunglasses at all times including in the shower. Photosensitivity is at a record high for me. I cannot tolerate any light without feeling like someone is shining a bright light in my eyes.
Symptoms: Sever cardiac heart attack like symptoms at 10PM for past two nights. Severe photosensitivity
Plan: Maybe need to cut back all med doses or increase minocin to every day
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Posted: Wed Jan 16th, 2008 18:08 |
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Please contact us or your doctor asap whenever you are concerned about cardiac symptoms. See When should I be concerned about cardiac symptoms?
We need to know what symptoms you mean when you report a cardiac herx.
Have you taken anything for anxiety?
We also need to know if you have left your low lux home during daylight hours and how long you were away from home and what days.
Please clarify how often you took Benicar when you increased the dose. A casual increase may not be enough. When in a 'crisis', you need to be very aggressive with the Benicar blockade.
Increase oral 40mg Benicar to every three around the clock (set an alarm and use a dosette to avoid error). And take an extra 20mg of Benicar sublingually with each every three hour oral Benicar dose. Continue until symptoms are tolerable.
If the extra dose of mino helped, then the next step is low-dose, high-frequency minocycline
Keep in close touch.............
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amypea
Member in Phase 3
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Posted: Thu Jan 17th, 2008 18:26 |
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Thanks!
The Benicar increase does not help. But the low dose minocin increase does help. The problem seems that on my day off of Minocin, at night, same time every night (9PM-11PM) I get some sort of major tachycardia, chest pain, breathing difficulties, chest thumping and skipping beats, and a thump followed by a cough. My heart rate will go very high until I take a minocin dose. But if I do this, then I end up on minocin every night. Taking more Benicar seems to make it worse.
The light exposure is reduced significantly which helps day time symptoms and the general feeling like the flu. Light exposure also may affect the power of the night time cardiac herx but I think this herx has something more to do with the Minocin. I notice that it can be reduced or eliminated with minocin but nothing else. Advil may also reduce the severity but does not eliminate it. There is a minocin connection. I am sure of this. Light is not setting this off.
I cannot seem to regulate this evening herx with anything except minocin. I have tried reducing thyroid meds, adding more beta blocker, cruching up Benicar and taking more Benicar and these things do not affect the night time cardiac herx.
This cardiac scare only happens to me at night. It never happens during the day. It's like my body is getting revenge on me for not taking a nightly dose of minocin. I am sure it is related to the minocin somehow.
Best,
Amy
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Posted: Thu Jan 17th, 2008 18:49 |
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| It looks like you are reacting to natural light exposure. Your choices seem to be to take minocin every day and not progress or to find a way to avoid that natural light. Perhaps if you take Benicar every four hours during the day, you can prevent the cardiac symptoms at night.
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amypea
Member in Phase 3
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Posted: Sat Jan 19th, 2008 22:08 |
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I think it is my thyroid or accidental vitamin D intake. I cut back on the thyroid meds and was able to skip the minocin last night. Two days ago, I skipped my egg beaters for breakfast and was able to skip the minocin that night also. So I looked on the egg beaters label and it had a lot of Vitamin D in it. I thought they had no vitamin D. I looked at the label and although the label indicated there was very little D, it did so on a serving that was like a tablespoon. Well, who eats only a tablespoon? I was eating 8 times that amount and I think it was adding up to about 40% of a daily intake of vitamin D. This was probably a huge source of the problem.
Yesterday I was so overstimulated from thyroid meds that I needed to cut back a serving. It helped a lot. Today, I feel fine.
It was the egg beater plus a clear change in thyroid status. I have a feeling I could still cut down a bit more on my thyroid meds still. The problem is that the day off minocin and the day on minocin seem to require slightly different dosing on the thyroid meds. The day off minocin I seem to need less thyroid meds and the day on minocin I seem to need less.
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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Knochen
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Posted: Sat Jan 19th, 2008 23:57 |
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Look for generic egg whites in the dairy case. Most groceries have them. Always, always, always check the label. I remember being shocked when I saw what was in Egg Beaters becasue I assumed they would be OK. 
Sorry you found out the hard way. That certainly might explain why you weren't feeling so hot!
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D <4 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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amypea
Member in Phase 3
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Posted: Sun Jan 20th, 2008 03:26 |
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You are correct! I think it was the egg beaters largely. But I also think there has been a remarkable thyroid improvement since I increased the minocin to 50mg every other day a little over a week ago. My cardiac symptoms may be related to thyroid overdose. Increasing the Benicar and Minocin may have actually been improving my thyroid rather than causing my cardiac herx.
I cut my dose down dramatically two days ago and my cardiac symptoms have decreased. Additionally, I feel better all around. Each time I took the Benicar my cardiac symptoms were worse because it was probably improving my thyroid and I did not realize it until I cut back the thyroid meds.
I have become extremely light sensitive since raising the Benicar and Minocin. I am in the dark with sunglasses most of the day now and even at night. This helps too.
____________________
CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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amypea
Member in Phase 3
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Posted: Sun Jan 20th, 2008 03:30 |
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I have a completely unrelated inquiry:
My fiance has sufferred severe chronic fatigue syndrome for over twenty years. He was unable to work for ten of them. He thinks it is due to Epstein Bar. His primary diagnosis was Attention Deficit Disorder.
He is thinking about starting the MP but wants to know if you have any patients who have ADD as their primary concern. Do you have any success stories from chronic fatigue patients who exhibit ADD? If so, can you send me a link to their story?
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CF/IDS FM cystitis candida babesiosis Epstein Barr Hashimoto's Ph1Oct07 Ph2May08 Ph3June08 25D18Mar08 Lunesta cyclobenzaprine metoprolol T3 Levoxyl Prochieve 8% Estrogen cream hydroxyzine NoIRs low lux home limited outings covered
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