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Foundation Staff
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Posted: Mon Jan 21st, 2008 21:22 |
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You made an excellent observation about your symptoms and your thyroid recovery. Please monitor thyroid function closely. See Thyroid supplementation on the MP.
We do not have any folks on the MP with a primary diagnosis of ADD but your fiance may find folks with ADD if he uses the search feature of this site. See Is the MP an applicable treatment for my disease?
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amypea
Member in Phase 3
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Posted: Mon Jan 28th, 2008 02:00 |
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Hello,
It has been a wonderful week. I feel great. Cutting back the thyroid dose has allowed me to up the Benicar. What must have been happening before, is that each dose of Benicar made me hyperthyroid due to an improvement in thyroid function. I associated these terrible cardiac symptoms with the Benicar and tried to take less of it. Now, it is just the opposite. I take the Benicar first and then if I need a dose of thyroid, I take 1/2 the dose, see how I feel and sometimes take the other half and sometimes do not need to take it. My thyroid dose depends on what I ate, it I exercised and how well I slept. My daily needs could vary by one dose depending on these things.
One thing is for sure. The increase in the Minocin to 50 every other day has resulted in an improvement in thyroid function, exercise tolerance, sleep improvement, mental and cognitive improvement and thyroid improvement. I feel so good I am bouncing off the walls. I started exercise again and I am amazed that the day after exercise I feel fine. It used to take me three days to recover from the terrible pain I experienced after exercise. That pain is gone.
I am holding steady with the following:
Minocin 50 every other day (25 if there is a herx but this is not happening much since cutting back thyroid meds)
Benicar 40 every 5 hours or 20 mg every 3 hours depending on how I feel.
T3 - 100-170 daily (down from 220 daily)
T4 - 300-450 daily (down from 550 daily)
Sunglasses at all times. Total clothing coverage. Hat at all times to reduce glare from top of sunglasses.
Everything else is the same. When do I increase the minocin to 100 every othe day? Next week? I needed 2 weeks to feel good when going from 25-50.
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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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Foundation Staff
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Posted: Mon Jan 28th, 2008 04:40 |
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Amy, it's wonderful to see you doing so well........ I assume your doctor approves of your thyroid supplement dosing method.
Please note the next mino increase is to 75mg.
In 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, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit.
You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs.
Let us know how it goes...........
P.S. Please update your the signature line. Thanks.
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amypea
Member in Phase 3
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Posted: Sat Feb 2nd, 2008 02:02 |
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I am doing well. Working out twice a week. Nonetheless, I have been gaining weight. Since starting MP, I have put on about 10 pounds. Not sure why since nothing else has changed except for some thyroid fluctuations. I have read other posts of people complaining about weight gain. When I start a new antibiotic dose, my weight goes down and then after a few weeks on the dose, my weight goes up again. Is that unusual?
I think tomorrow I will take it up to 75 of minocin 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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Foundation Staff
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Posted: Sat Feb 2nd, 2008 08:37 |
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Thanks for letting us know you are doing well. Don't forget to use the reporting format.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Plan:
Questions:
Try to keep things in perspective regarding health, fitness and appearance. Please see Are there any guidelines on exercise during the MP? and Will the Marshall Protocol help me lose weight?
Keep up the good work.........
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amypea
Member in Phase 3
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Posted: Tue Feb 5th, 2008 22:19 |
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Thanks. I jumped the antibiotic up to 75mg every other day and as expected, my weight dropped immediately. I have noticed a pattern here. When I start a new dose of antibiotic, weight drops and I need to cut my thyroid meds. Then a few weeks into the new dose, my weight goes up and I need more thyroid meds. Clearly the weight is related to the thyroid. As my thyroid improves with each antibiotic dose, my weight goes down. Then, as I adjust to the dose, my thyroid starts to get mad and I gain weight.
I hope I reach a point where this does not happen. Maybe in phase 2. I did not have any increased symptoms when going from 50mg of minocin to 75mg of minocin every other day. So, I guess I will only need to stay at 75mg for a wekk or two since I have not herxed yet from the increase. Usually, there is a major herx with the new dose and I need a couple weeks to adjust. That has not happened yet with the current increase.
I need to meet with my doctor to get an increased minocin prescription. I would like to get the phase two scripts while I am there and hold them until they are ready to be filled. Can I get the questionnaire for phase two? My guess is I am only a couple months away from starting it since I have been in phase 1 for 4 1/2 months now.
I find I am getting used to the meds and not herxing from them now.
UPDATED MEDS:
MP MEDS: mino 75mg every other day, Benicar 20mg every 3-4 hours
LIGHT EXPOSURE: None. Under glasses and in the dark 24 hours. Sunglasses all the time even at night. Avoiding all Vitamin D foods.
SYMPTOMS: Some hypothyroid symptoms and body pain but very mild. Cardiac herx is under control with light avoidance and thyroid med reduction
My other meds are all the same as before. I was able to reduce the thyroid meds substantially but then my needs went back up again about two weeks after the antibiotic dose increase.
Exercise intolerance is better. Sleep is better.
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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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Foundation Staff
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Posted: Tue Feb 5th, 2008 22:53 |
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Amy, I'm proud of the way you have learned to follow the MP, assess symptoms and manage immunopathology. It's wonderful to see you doing so well......
Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
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amypea
Member in Phase 3
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Posted: Tue Feb 12th, 2008 01:29 |
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| Thanks! I increased the Benicar a little yesterday and herxed like crazy last night for several hours. I think the Benicar makes me herx more than the minocin does.
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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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amypea
Member in Phase 3
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Posted: Sun Feb 17th, 2008 01:32 |
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I have felt terrible the last three days. All my CFS symptoms came back, the fibrolyalgia came back and my thyroid was so swollen I could hardly swallow. I thought that the MP had stopped working maybe because I was going to slow in phase 1 so I jumped the minocin to 100 every other day. Nothing happened. I felt no better and no herxing from the increase. I was desperate and did not know what to do.
So today, I increased the Benicar and felt much better. I herxed but I will take a herx over the chronic fatigue, fibromyalgia, thyroiditis feeling any day. I feel so good now. Guess I need to take the Benicar a little more. I was down at about 20mg every four hours and now I am taking 40mg every five hours. Much better.
UPDATED MEDS:
MP MEDS: mino 100mg every other day, Benicar 40mg every 5 hours
LIGHT EXPOSURE: None. Under glasses and in the dark 24 hours. Sunglasses all the time even at night. Avoiding all Vitamin D foods.
SYMPTOMS: Some hypothyroid symptoms and body pain but got better with Benicar increase. Cardiac herx is under control.
My other meds are all the same as before.
Levothyroxine - 450 daily
T3- 210 daily
Lunesta - 3mg daily
Cyclobenzaprine - 20mg daily
Prochieve - 8% 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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Foundation Staff
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Posted: Sun Feb 17th, 2008 05:43 |
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Amy, I'm glad you're feeling better.....
Five days ago, you wrote, "I increased the Benicar a little yesterday and herxed like crazy last night for several hours."
Today, you report you increased mino because you thought the MP wasn't working. You don't need to feel like a 'dog' for the MP to be killing bacteria! See Is there a right pace for the most effective healing on the Marshall Protocol?
Based on your history and symptoms, your routine dose of Benicar should be 40mg every six hours. Increase to every four hours when symptoms become intolerable.
Please remind me why you are taking Prochieve. See Why should I avoid hormone supplementation? Are you taking any non-MP meds you haven't listed? Are you using any other protocol treatments too?
You have been on the MP since October.....any plans to check your 25-D?
Please ask before you take any action that is unfamiliar to you so we can help you stay comfortable............
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amypea
Member in Phase 3
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Posted: Thu Feb 21st, 2008 23:41 |
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Hello,
I have been on Benicar 40mg every 4-6 hours sine my last post. Minocin is 100mg every other day. I feel great. The weight I gained in the first part of phase 1 is dropping off and I am not even working at it. Yeah!!! My clothes fit again. My energy has improved since raising both minocin and benicar.
I woke up in middle of night twice this week and needed to take more Benicar. I felt very hyper. So I took a Benicar and went back to sleep. This happened twice. Could be thyroid? Other than this, no real herxing.
I also know that the Benicar is having a positive effect on the thyroid sympoms. When I get that hypothyroid feeling (neck swelling, difficulty swallowing, body pain) I pop a Benicar and it goes away.
My food allergies are totally gone. For the first time in years, I am not having reactions to trigger foods like corn, milk, sugar, wine, etc.
Vit D results coming in a week or so.
I feel a little "yeasty" since stopping the Biotin and Cellulase. Some yeasty symptoms. Any suggestions for that?
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Total Light avoidance 24/7
No supplements
No Vit D
Sunglasses NOIR until bed time
Decreasing progesterone slowly
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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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Foundation Staff
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Posted: Fri Feb 22nd, 2008 05:50 |
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Thanks for checking in.........
I'm concerned about your frequent adjustment in levothyroine and T3. It isn't possible to know if you are hypothyroid or hyperthyroid without the appropriate tests. Work with your doctor to find the correct dose of supplement as you progress on the MP by monitoring thyroid function frequently.
If symptoms appear to be due to improved thyroid function and too much supplement, reduce the dose and contact your doctor as soon as possible.
See Thyroid supplementation while on the MP
I'm not sure what you mean by feeling 'yeasty'....
Congrats on getting rid of the food intolerances.........
You are doing an excellent job, Amy, trying to do everything right. Keep up the great work.....
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amypea
Member in Phase 3
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Posted: Sat Mar 22nd, 2008 01:21 |
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Hello,
I have been absent a couple weeks waiting for my D results. Finally got the 25D is at 18. Not sure what that means. I have been in phase one now since October 2007 (almost 6 months). Nothing else new to report.
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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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Foundation Staff
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Posted: Sat Mar 22nd, 2008 02:48 |
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Thanks for checking in. You've had a rocky road for six months so it's very important you post weekly.
Don't forget to use the reporting format.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Plan:
Questions:
Your 25-D of 18ng/ml is still high enough to suppress the immune system. This means you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D.
"The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D.
It is important not to stay in phase one too long. Bacteria may exist that are resistant to minocycline and they may repopulate tissues cleared of bacteria. Low-dose combinations of MP antibiotics are far more effective at killing CWD than antibiotic monotherapy.
Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. Before you proceed to phase two, ask your doctor about the tests you need to monitor your progress on the MP.
Keep in touch............
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amypea
Member in Phase 3
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Posted: Thu Mar 27th, 2008 02:17 |
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Am I ready for phase II yet? I have been in phase I for over 6-months. Do I have to wait until the D is down to 12mg to start phase II?
MP meds: 100mg minocin ever other day, Benicar 160 daily
Palliative meds: same
Light exposure: None
Symptoms: None
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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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VEZ R.N.
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Posted: Thu Mar 27th, 2008 05:28 |
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Thank you for checking in Amy.
Note that Meg gave you the link that will give you the steps for getting a questionnaire and help you assess your readiness for phase II.
Your Vit D levels do not have to be under 12 to move ahead.
SEE: How do I know if I'm ready for phase two?
The sooner you get your questionnaire completed and sent the quicker you can prepare to move ahead.
Continue all supportive measures, avoidance of light exposure and Vit D ingestion, good nutrition and hydration and rest.
Hang in there and keep up the nice work.
Warm Regards, VEZ
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amypea
Member in Phase 3
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Posted: Tue Apr 8th, 2008 04:45 |
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Hello,
I have read this link many times and I am very confused because I have fulfilled all the criteria listed for being ready for phase II and yet I have not been advised that I can begin phase II.
I have been in phase I for 7 months now, much longer than your site recommends.
My symptoms are gone
I am at the maximum levels of phase I medication without problems
I have been avoiding all light and wearing sunglasses all day and night for several months and I have no outdoor sun exposure.
My vitamin D is lower than some of the other people on the protocol who are in Phase II.
Yet, I have not been advised that I can enter phase II and I do not understand why. My doctor has told me that he wants me to start phase II and I have the medications filled to do so. The only reason I have not started it under his supervision is because I am trying to adhere to the directive on this web site. And yet, my doctor and I cannot understand why I am still in phase I.
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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VEZ R.N.
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Posted: Tue Apr 8th, 2008 08:20 |
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Amy,
Please note in the above 2 Moderator posts almost 2 weeks ago where you were advised on how to proceed to phase II. It requires you to complete the questionnaire that is referred to in the above link. It is recommend that you send for this questionnaire, fill it out and return to email address found in the link early enough so there is not a time lag for additions to your meds.
The phase I guidelines clearly state the procedure for what is required of the member when reaching 100mg of Mino. Please refer to the last paragraph in Step Eight page 8. SEE:PHASE ONE MARSHALL PROTOCOL
Please send for your questionnaire, fill out and return so you can move ahead. Click on: VEZ
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amypea
Member in Phase 3
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Posted: Sat Apr 12th, 2008 23:48 |
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Hello,
Thanks for your reply. I have filled out the phase II questionnaire I believe twice. I am happy to fill it out a third time. I think the only question I left blank was the Vit D because I had not had it tested until recently.
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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amypea
Member in Phase 3
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Posted: Wed Apr 16th, 2008 02:59 |
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Hello,
My doctor wants me to start phase II. I want to check with you before I do this. He feels that I have been in phase I for a lot longer than his other MP patients and that it will not work effectively if I remain here. I have not received any instructions on phase II. I have fileld out the questionnaire for phase II a couple months ago and even spoke to a moderator over the phone regarding my answers. I have had the vitamin D testing. Haven't had any herxing for a while.
I have been in phase I for over 7 months and I feel that the benefits I have received from the protocol are slowly slipping away. Many of my symptoms have returned over the last week including the chronic fatigue and fibromyalgia. My doctor suspects that this is because I have been in phase I for too long and the minocin alone is no longer effective.
Best,
AmyLast edited on Wed Apr 16th, 2008 03:08 by
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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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