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amypea
Member in Phase 3
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Posted: Fri Oct 5th, 2007 02:18 |
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Hello,
I am going to start the MP next week. But I currently take very large doses of thyroid medication for thyroid hormone resistance (over 1,000mcg per day)
I also take large amounts of antifungal medication just to get by. I fear that with systemic candidiasis I will need the antifungals if I start the MP due to the heavy antibiotics.
What about my sleep meds? Lunesta, Cyclobenzaprine?
What do you recommend? Do I have to stop my antifungals? Do I have to reduce my thyroid medication and if so how much? I will be my doctors first MP patient. I also have babesiosis, hashimoto's, cardiomyopathy, epstein barr, fibromyalgia and CFIDS.
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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 Oct 5th, 2007 04:58 |
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Hi Amy,
Welcome to our study-site for the Marshall Protocol (MP). We're glad you found us.
Your diagnosis and symptoms indicate Th1 inflammation. Please see Symptoms of Hypervitaminosis-D and you may recognize a few more. You will not get well and your health will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the MP. Please see Is the MP an applicable treatment for my disease?
Members with hypothyroidism continue their thyroid supplementation while monitoring thyroid function closely to assess if and when supplements can be decreased. Some have been able to discontinue thyroid supplementation as their inflammation resolves.
I hope you will continue reading the information here to help you understand the cause of Th1 inflammation and how to treat it safely and successfully. For background information, see What is the Marshall Protocol? The science is detailed here and simple explanations provides less technical descriptions.
Our members provide personal testimonials to the efficacy of the Marshall Protocol in Marshall Protocol Success Stories. You may follow the progress of our members in their phase 1 progress reports or the Alumni Forum. Admittance to the phases 2 and 3 forum where over 2/3 of our membership report is accessible only to members in those phases and health care professionals.
Before you begin the MP, you must read and thoroughly understand the Phase One Guideline and review the items on this checklist. The second and third phase guidelines will be available to you upon request at completion of phase one.Your physician has access to all guidelines in the Private Section for Health Professionals.
Our study site is the only source that is certain to have reliable information about the MP. Do not assume that your doctor knows all about the MP because s/he has other patients on it or is willing to study it. You must educate yourself to ensure the MP is followed correctly. Please note that:
-It is the patient's responsibility to see that the prescribing doctor is following the MP correctly.
-It is the patient's responsibility to see that the prescribing doctor understands the effectiveness of the MP and the dangers inherent in deviation from the guidelines.
-Combining other protocols with the MP will not work and can lead to dangerous immunopathology. Components of other protocols or alternative treatments such as (but not limited to) supplements, vitamins, glyconutrients, rife machine, infrared sauna, SAD light, chelation, etc are all contraindicated.
Many medications must be avoided on the MP. Be sure to inform study site Staff of all medications and supplements (both Rx and OTC) you are taking.
Antifungals are contraindicated on the MP. Some doctors treat systemic candidiasis before starting the MP.
It's okay to take Lunesta and cyclobenzaprine if they relieve intolerable insomnia.
To verify that the MP is the right treatment for you, ask your doctor to test your D-Metabolites. When you get the results, post the actual numbers in the Preliminary test results forum (see What to include in your preliminary test results report) for expert analysis because results within the normal lab ranges can still be abnormal. For details see Vitamin D Tutorial.
Because vitamin D is immunosuppressive, it's important to avoid vitamin D supplements (multivitamins, any kind of fish oil, Omega-3 capsules) and all foods naturally high in vitamin D to bring 25-D down to a therapeutic level of 12ng/ml or less.
Order the required sunglasses (NoIR, Bolle100, Oakley or Zeiss) as soon as you decide to do the MP because they may take a few weeks to arrive. You should not begin Benicar without them because your eyes may become photosensitive. Ordering information is in Protecting Your Eyes.
Avoiding sunlight exposure is usually necessary to some degree. Before you begin to do that, please read Should I avoid sun exposure and vitamin D while I'm waiting to start the MP?
Your health care provider can communicate with other medical professionals using the MP by posting in the Private Section for Health Professionals. S/he will be interested in the Papers for Physicians, the Letter of introduction for your MP supportive doctor and the science DVDs. You may encourage him/her to call or email Dr. Marshall if needed (contact information is on all his professional papers).
Presentations by experts, tutorials about the MP and testimonials by recovering members were videotaped at our 2005 and 2006 International Conferences. Click here to obtain these informative DVDs.
Everything you need to know about the Marshall Protocol is in these two forums: Essential Info About the MP and Marshall Protocol FAQs. Please refer to them often.
The Marshall Protocol is a serious commitment. and should not attempted without fully understanding it. Should you decide to pursue treatment with the MP and wish our assistance, let us know if you agree with the Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol which are required for participation in our study and counseling on this study site.
Your doctor is responsible for your welfare. This study site acts in an advisory capacity only. All guidance given on this study site is based on the premise that your doctor supports your participation in our clinical study and that support implies permission to follow our recommendations. Please keep your doctor informed of your progress with regular reports and do not hesitate to contact him/her with any concerns.
We have many members who are very symptomatic or who have been ill for a long time who are doing well on the MP. But you should know that if the disease process has advanced to the point where symptoms are extremely debilitating or vital organs are severely compromised, it may be very difficult or even impossible to tolerate the immunopathology involved in the healing process.
To ensure your safety and provide study data, we expect members (even those who think they are doing well independantly), to post in their progress report (start in the Benicar only forum) at least weekly so Staff can catch any problems early and have details of past responses to provide effective assistance. It is important that you report all pertinent details, even those that might seem embarrassing. Be sure to notify staff before you take any action that is unfamiliar to you. Staff usually respond within a few hours but we ask members to give us more than a day to answer time sensitive questions.
Members who chose not to become an active participant on the study site are not officially on the Marshall Protocol because it is still in the clinical study stage and there are no physicians yet certified in the practice of the MP.
In phase one, you will be expected to learn to recognize immunopathology and how to manage your immune system response with medication management techniques. Knowing how to manage the MP independently on a day-to-day basis will serve you well should an urgent situation occur.
As long as you are on the protocol, it is essential that you continue reading the study site regularly because important new information is frequently posted.
Because the increasing volume of requests for assistance is threatening to overwhelm our small staff of volunteers, before you post a question, we ask that you type key words into the search feature of this site or an Internet search engine. This is an important skill to learn so that you can continue to help yourself as you progress on the protocol.
If you are unable to find the answer, post your pre-MP questions in this thread. Be sure to click on all the links in our responses to you. Take your time to absorb all the information. You may be eager to start but it's important to be thoroughly prepared before you begin.
We look forward to following your progress on the MP. 
Best, Meg
P.S. Before your next post, please add the required signature line. In your next message, please add the pertinent details required so we can better assist you. Thank you.
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amypea
Member in Phase 3
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Posted: Thu Oct 25th, 2007 04:27 |
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Thank you for your support and direction.
I stopped ALL vitamin D two days ago and I am herxing really bad now. I cannot tolerate the glare from my computer, have bad photosensitivity and I feel like I have the flu. I have gained about 7 pounds in 3 weeks.
This feels terrible but I guess that means its working. I always felt better after eating Vitamin D foods. I even tolerated them well at the beginning of MP and wondered why my herxing was so minor. Oh boy was I wrong!
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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 Oct 25th, 2007 06:28 |
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| In your next message, please add the pertinent details required so we can better assist you. Thank you.
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amypea
Member in Phase 3
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Posted: Thu Oct 25th, 2007 22:33 |
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Hello,
Below is the required info. I think that my bad herx has something to do with my thyroid medication. It seems that on days I take the mino I need to cut back on some thyroid meds to accommodate the herx. I failed to do that and so I had herx plus too much thyroid hormone which was a real mess.
What is your diagnosis or symptoms?
Thyroid hormone resistance, hashimotos, babesiosis, CFIDS, Cystitis, Candidiasis
I got a bladder infection and yeast infection week 2 of marshall and have gained some weight but other than that no real bad symptoms other than rapid pulse and sleep trouble.
What are your current significant symptoms?
Rapid pulse, weight gain, sleep trouble.
What is your most recent 25-D level?
Did not check them because Dr. did not have ability to freeze the sample. But we did a theraputic probe and I herxed immediately. Stopped herxing by week two because I was still eating vitamin D. Herxed bad in week 3 because I wore sunglasses inside and stopped all D. Took Minocin and it really made me herx worse. Last night I slept in a turtle neck, sweater and winter coat covered by 2 comforters and I had the chills. Today I feel good because I did not take any thyroid meds. I suspect that my thyroid status is changing for the better and that the large doses of thyroid meds are not good.
Have you completely weaned from prednisone and/or all other steroids?
Have not taken prednisone in three years. Today I take advil. I still take it because it helps with the herx.
List all non-MP prescription medications.
I TAKE TOAY: Acne cream benzoil peroxide (acne); T3 and Levothyroxine (thyroid hormone resistance and hashimotos); Lunesta and Flexeril (sleep); Atarax (allergies and asthma and cystitis); Macrobid after sex or swimming pools (cystitis); and my MP medications of Benicar every 4-5 hours and 25mg of Minocin every other day
I STOPPED WITH MP: Diflucan and Nystatin (Candidiasis); Metoprolyl (tachycardia and palpitations)
List all supplements (Rx or ORC): I take an anti-candida pill which is just cellulase and I take biotin. Also take 3 strong probiotics that are awesome. No other supplements and no vitamin D in anything.
Are you using any alternative treatments or components of other protocols?
I am not currently doing this but 6 months ago I did chelation and infrared sauna which were helpful.
Today, I do revised mayers cocktails without vitamin D or folic Acid. My doctor does these and he does an amino acid I.V. He is learning about the MP and says that these are okay because no vitamin D or folic acid.
Have you discontinued all Vitamin D supplements, including multivitamins, any kind of fish oil and omega-3 products?
Yes. Per your advice I have completely removed them and the result is a stronger herx.
When did you start Benicar?
Three weeks ago started Benicar and herxed for about 4-5 days. Started Minocin on day 8 and did not herx until I stopped vitamin D a few days ago. Now the Minocin is doing a full day of herxing to me. On the off day I feel good. I take Benicar 40mg every 4-6 hours but it is usually necessary due to major rapid pulse, that I take it every 4 hours. I wake in the middle of the night with racing pulse and take another dose of Benicar then. On Minocin days I need to take the Benicar at 20mg every 2 hours to control herxing and I need advil too.
Do you have an adequate supply of Benicar? Yes.
When did you start taking Minocycline? Day 8 but did not herx until I stopped vitamin D for two days. Then I herxed bad from Minocin.
What is your dose and frequency (days or hours between doses) of Minocycline? I take it in the AM every other day, 25mg. I have not adjusted the dose any but I will have to do it if I herx like I did yesterday.
Strange but I felt like I was going to die yesterday. I did not sleep last night. But today (my off day for minocin) I feel like a superstar. I feel great! No thyroid meds yet today and I feel awesome. This marshall protocol is a bit bipolar: one day you feel like you are going to die and the next day you feel like your a kid again with boundless energy. The good days keep you going.
What is the effect of Minocycline on your symptoms? Makes them much worse.
How long (hours, minutes, days) does this effect last? almost a full day.
Have you adjusted the dose and frequency of Minocycline to minimize symptoms? No. Perhaps I should try this.
Do you have an adequate supply of Minocycline? Yes.
Are you taking any other antibiotics? I am supposed to take Macrobid 100mg after sex or swimming and I did this for weeks one and two of MP. It did not make a difference. I still got a bladder infection in week two and had to take Keflex 500mg during week 2 of MP. Keflex made me tired and muscles ached but did not change my herx which was non-existant during week 2 because I was still eating vitamin D. Week 3 no more Keflex just Minocin 25mg every other day and Macrobid as needed (usually means one or two days per week).
Are you diligently avoiding foods high in Vitamin D? I am now. Milk did not bother me in weeks 1-2 but then I read the science behind it and realized it has nothing to do with that. So I stopped all of them including Milk and within two days was herxing bad. Photosensitivity started two days after stopping Vit D. Now have to wear sunglasses in doors. If I eat D then I do not herx but if I do not herx then I do not get better. So I do not eat D.
Have you darkened your house to 30 lux or less? Not sure so I just wear the sunglasses or eyecovers.
How often do you go outside during the day and how long do you stay outside? I never go outside. I have had photosensitivity since my teens.
Do you cover up from head to toe when you must go outside during the day? Absolutely.
Are you exposed to sunlight at work or school?
bright lights at school so I wear sunglasses. I have told all my teachers that I am on Benicar and that I have to wear sunglasses to class.
Which sunglasses (NoIR, Bolle100, Oakley or Zeiss) are you wearing? I am wearing these sunglasses that wrap over your regular glasses and block light from all sides. I got them at Wal-mart and they said they are total UV block. They work indoors but are insufficient outdoors. I never go outdoors but if I did I would need better eyewear.
Do you wear sunglasses when you work on your computer? Yes.
Is your computer screen brightness turned down? No but this is a good idea.
Do you wear sunglasses while watching TV or movies? No. But I will if I need to.
Do you read MP.com regularly? Yes. I try to get on daily.
Is your doctor monitoring your progress? Very closely. My doctor has Sarcoidosis and he wants to try himself on the MP but before he does he wants to see how two of his paitients do. I am one of two patients on it and so far so good.
I work full time and then I go to law school at night. I have a 7AM-10PM day every single day. Since starting the MP, I have only missed work once and law school once. Additionally, my mental clarity has improved. I have had some rough days but apparently not rough enough to keep me bed ridden. These are good statistics.
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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 Oct 26th, 2007 04:19 |
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Thanks for all the details.....To maximize safety, protocol efficacy and chance of success, we expect all members (even those who think they are doing well independently) to post a brief progress report weekly (more often only if not doing well) so Staff can catch any problems early and have details of past responses to be better able to assist you if you need help.
We are trying to standardize progress reports to make data collection easier. Please use this simple format each time you post a report. Briefly list these details:
MP meds:
Include doses & schedules for each, changes, number of days at current dose/schedule
Non-MP med use:
Light:
Describe amount of recent exposure, use of NoIRs
Symptoms:
List only those that are significant and recent. Indicate if they are tolerable or intolerable.
(Pertinent information that is ongoing should be in your signature line.)
I'm glad you did okay despite not following the protocol correctly when you started. There are still a few things that you need to change.
Macrobid and Keflex are not allowed while on the MP. Do not take any other antibiotics while on the MP without asking first. See I need to take a different antibiotic for awhile. What should I do?
Anti-candida medications are contraindicated. See Candidiasis (yeast infection)
The Mayer's cocktail and amino acid I.V must be discontinued. See Why do I have to stop my alternative treatment and avoid most supplements?
Probiotics may be detrimental. See Should I take probiotics?
If you are working full-time and going to school, you are getting considerable sun exposure. See The Effect of Sunlight/daylight and Bright Lights.
You must wear NoIRs or Bolle 100s. For purchasing info, see Protecting Your Eyes.
It's important that you test your 25-D asap. Because vitamin D is immunosuppressive, it's important to avoid vitamin D supplements (multivitamins, any kind of fish oil, Omega-3 capsules) and all foods naturally high in vitamin D to bring 25-D down to a therapeutic level of 12ng/ml or less.
Be sure to have Doc monitor your thyroid function regularly. See Thyroid Disease and Th1 Inflammation
You must read and thoroughly understand the Phase One Guideline.This checklist should be helpful. During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. You will gain experience adjusting MP meds and using your personal tool kit 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.
Your doctor can communicate with other medical professionals using the MP by posting in the Private Section for Health Professionals. S/he will be interested in the Papers for Physicians, the Letter of introduction for your MP supportive doctor and the science DVDs. You may encourage him/her to call or email Dr. Marshall if needed (contact information is on all his professional papers). It would be very helpful for him to begin the MP before he puts any more patients on it. Firsthand experience is priceless.
As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed. Hang in there.....
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amypea
Member in Phase 3
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Posted: Sat Oct 27th, 2007 01:45 |
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Thanks.
I did not have a bladder infection for almost 3 years until I started the MP. This is because of prophylactic 100mg macrobid. I am scared that the low dose of minocin is not enough to keep the bladder infections away. I got the infection because I did not take any macrobid and thought that the minocin would do the job but it did not.
What do you suggest I do so I do not get another bladder infection? The minocin alone is not keeping the infections away. Should I increase the minocin? Is there a safe prophilactic antibiotic I can take with the minocin instead of the 100mg of Macrobid? Each time I get these infections the antibiotics they put me on cause yeast problems. I would rather avoid them with a low dose prophylactic. Can you recommend one?
This blog indicates that these bladder infections are not infrequent early in the protocol. That is no fun for people with interstitial cystitis.
I have been off the anti-candida meds since starting MP. But the bladder infectiosn really set me back and the Keflex makes the yeast worse. I need a prophylactic measure.
I can stop the supplements, IVs and probiotics. My doctor recommended them. I will advise him that they cannot be used with MP patients
I have been off all D for a week.
I thought that the full time work and school meant I had no sun exposure because I am indoors from dawn till dusk. I do not have any classes near windows. I rarely see daylight.
----Current Meds----
3 mg Lunesta, 20mg Flexeril, Atarax, 200mcg of Levoxyl, 100mcg of T3, Benicar 40mg every 4-6 hours, Minocin 25mg every other day, Progesterone cream 8%
---Current Symptoms---
Photo sensitivity
Racing pulse nearly all the time
Muslce Weakness
Bladder infections and bladder pain
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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 Oct 27th, 2007 01:56 |
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This blog indicates that these bladder infections are not infrequent early in the protocol.
I am not aware of frequent reports of bladder infections on this study site. Please see I need to take a different antibiotic for awhile. What should I do? Let us know if Doc agrees to try a fluoroquinolone.
Probiotics are okay if they are effective to treat an intolerable symptom.
The commute to work or school can provide folks who are photosensitive with too much sun exposure. Please take appropriate precautions.
It's good to know that you will be discontinuing the contraindicated supplements. Let us know how it goes..........
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amypea
Member in Phase 3
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Posted: Tue Oct 30th, 2007 03:49 |
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Hello,
My doctor will do whatever you recommend with the antibiotics. Can you recommend a spcfici flouroquinone that targets bladder infection bateria?
I feel good and did not herx today from my Minocin. Vitamin D free.
Thanks!
---------------------------------------------------
HEALTH UPDATE... DOING GREAT! HAD A GREAT WEEKEND!!
I ate four mini candi bars today that were calling at me from the Halloween candy bin. I did not get sick. It has been almost 8 years that I have not been able to eat sweets without getting really sick. Today I ate four candi bars with no side effects at all. It was great!
Candi bars aside, I think I have the weight gain figured out. I was not able to take my normal thyroid meds because of herxing for the first few weeks and that was probably the cause of my weight gain. I was able to take the full dose the past few days and I think it solved the problem.
Herxed bad on Friday from Minocin so I took a little extra and it helped calm the herx.
----Quit Meds----
I quit my progesterone and estrogen replacements last Thursday and so far I feel great.
Quit metoprolyl and all antifungals and probiotics. Still doing great.
----Current Meds----
3 mg Lunesta, 20mg Flexeril, Atarax, 300mcg of Levoxyl, 160mcg of T3, Benicar 40mg every 5 hours, Minocin 25mg every other day
---Symptom improvement ---
Another week with no body pain.... this feels great!
Sleeping like a baby... this feels great!
I have no blood sugar problems and can eat sugar again... this feels great!
Concentration is better than usual.
If I feel this good next week I may try to exercise for the first time in months.
---Current Symptoms---
Photo sensitivity (minor this week)
Racing pulse nearly all the time (getting better)
Muslce Weakness
Bladder infections and bladder pain (will try a prophilactic)
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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: Tue Oct 30th, 2007 06:25 |
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The fluoroquinolones we recommend are Cipro and Levaquin. See I need to take a different antibiotic for awhile. What should I do?
Be sure to let Doc know if you can't take your thyroid supplement for any reason. She will want to monitor your thyroid function closely.
Do you mean you discontinued metoprolol? If so, why were you taking it?
I'm glad extra mino was able to dampen symptoms.
It's great to read of your improvements. Please see Are there any guidelines on exercise during the MP?
Keep up the good work........
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amypea
Member in Phase 3
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Posted: Wed Oct 31st, 2007 01:37 |
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Hello,
I used to take Metoprolyl for tachycardia and heart palpitations that we believe are due to the thyroid. Since I take T3, I needed the metoprolyl at night to shut off the stimulation from the thyroid. It worked like a sleep drug for me. I could not sleep without it and would wake every night at 3AM with major sweats and palpitations and chest pains.
I still have tachycardia at night but I think that large doses of Advil are helping to quiet it down and I also think that my night time cocktail of Lunesta, Atarax and Flexeril help to quiet it down. I notice that when I herx it always seems worse at night.
I will read the antibiotic section and ask my doctor about the Levaquin. I will also see the exercise section.
Best,
Amy
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Posted: Wed Oct 31st, 2007 03:50 |
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| Please inform your doctor that you are not taking metoprolol. He will want an explanation why you've stopped it and a detailed report of your symptoms without it. If he wants you to continue it, that is okay.
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amypea
Member in Phase 3
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Posted: Tue Nov 6th, 2007 03:43 |
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Thanks!
Positive Update:
Week has been good. I am past the first month now and I have no body pain or thyroid pain which is great and unusual for me. I am tolerating foods I have not eaten for over a decade like fruit, sugar, wine, pop corn, candy. Not that I am living on junk food but it sure is nice to be able to indulge after years without it. No fatigue.
I have not had a period in a couple months. My hormones are probably adjusting. I also notice that I have exercise intolerance and get winded walking up stairs or grocery shopping. So while I am not fatigued in that I need to go to sleep (like I was before MP), I have muscle fatigue in that I cannot really lift anything or walk more than 1/2 block without feeling like I did a tri-athalon.
I am not herxing from the 25mg of minocin anymore. I know that I have taken it on the days I take it so there is a mild immunopathology but it is not herxing like I was before. I have gone 6 days without herxing. Do I need to raise the does or is this an indication of too much light exposure?
Had to go back on 25mg of Metoprolyl but only before bed. Too much T3 was causing muscle spasms at night and could not sleep. Also very agitated. Not noticing any bad effects from it. I was only off it for 10 days.
No Vitamin D. No sun. Wearing sunglasses when exposed to bright.
Meds still taking now:
Levothyroxine 400mg, T3 220mcg, Metoprolyl 25mg, Atarax at night, Lunesta 3mg, Flexeril 10mg, Benicar every 5 hours, Minocin 25mg every other day, Cipro 250mg as needed,
Meds stopped taking when starting MP:
Antifungal flucanazole and nistatin in large doses, Estrogen, Progesterone
____________________
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: Tue Nov 6th, 2007 03:56 |
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| One more thing. Does pulse have anything to do with blood pressure? I frequently have symptoms of low blood pressure but my pulse is usually in the high 90's because of the thyroid meds. I get dizzy on standing and my pulse gets really fast when I stand. If I bend over and my head is below my torso I black out a bit and feel like I am going to faint. Sometimes I get really cold and nothing will warm me up.
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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: Tue Nov 6th, 2007 20:14 |
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I completely jinxed myself. About a half hour after I wrote to you last night that I was not herxing, I experienced by far the worst herx yet.
I realized that my immunopathology reaction does not begin until about 8 hours after taking the minocin. I was in terrible discomfort last night and did not make it to work today. My pulse was so high I could not get out of a reclining position without blacking out. So I have been laying down since 9PM last night and cannot sit up without blacking out.
I also realize that on days I take minocin I CANNOT take a probiotic. I can take it on the off day but if I take it on the minocin day I experience much worse herxing. When I am herxing, I try not to take my thyroid meds because it is too much stimulation.
Guess I have to stay at the 25mg of Minocin. Although last night and today I had to take 25mg extra of minocin just to control the herx.
____________________
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Posted: Thu Nov 8th, 2007 07:46 |
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Thanks for checking in. Symptoms of low blood pressure and tachycardia are usually due to the disease process but you are taking your thyroid supplement erratically so this may be a factor. You should take it based on your doctor's assessment of your thyroid function. If you think symptoms are due to too much thyroid supplement, you need to discuss this with your doctor before you reduce the dose.
It's difficult to tell what is happening because you are changing more than one thing at a time and sun exposure may be a factor. When you say "no sun", we will assume you have not left the house.
Please use our new reporting format and provide all the info asked for. This provides a 'snapshot' of your current situation so we can provide an accurate response.
Hang in there.....
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amypea
Member in Phase 3
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Posted: Wed Nov 14th, 2007 01:15 |
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I have severe muscle weakness and intolerance of walking more than a single hallway. Cannot go up stairs without feeling like I just climbed Mt. Everest. No body pain just severe weakness. I am a couch potatoe and it is really bad. It is the most out of shape I have ever been. Rate 10/10 muscle fatigue and exercise intolerance (more like movement intolerance).
Noticeable change in muscle tone. I am all flab.
I am constantly craving junk food. It is all I want to eat. I never want healthy food. I crave sugar.
Still on all same meds both MP meds and other.
Having minor herx to antibiotic but it is not bad.
Still no body pain.
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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 Nov 15th, 2007 00:32 |
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Thanks for checking in. 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 such as light exposure or search for your previous list of meds .
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
I'm sorry you are feeling so weak. This is not simply being out of shape. An increase in any symptom that correlates with MP therapy (including weakness and food cravings) is probably due to immunopathology. See How To Identify Immunopathology (Herx). Taking an extra dose of Benicar or increasing Benicar to every fours hours can help assess if symptoms are due to immunopathology. Chewing or sublingual dosing may give faster absorptiona and relief. See When and why should I vary my Benicar schedule? and BenicarQuiklink.
Hang in there..........
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amypea
Member in Phase 3
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Posted: Thu Nov 15th, 2007 04:05 |
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A couple questions:
1- Is it normal that my herx is much worse at night (I take mino in the AM and my herx starts at about 4PM really mild and progresses through the night to really bad point at about 9PM)
2- Isi t normal that I have not had my period since starting the MP?
3- I am confused about using minocin to regulate the herx. I find that increasing he benicar does not help very much for reducing the herx. I have found that increasing the frequency of the mino when I am herxing does seem to give me more relief. Is that normal? Sometimes I need to increase the mino 25mg to 50mg extra on the day I take the minocin. I do not herx much on my day off, at least not intolerable. But the day on minocin in the AM by 9PM I am in a lot of discomfort.
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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: Thu Nov 15th, 2007 07:43 |
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1- Yes
2 - Yes......see Hormonal changes resulting from changes in 1,25D-hydroxyvitamin-D
3- Some folks get relief from low-dose, high-frequency minocycline and some do not. You are doing fine taking it as needed. Please see When to take low-dose, high-frequency minocycline and What to do when immunopathology (immune system reaction) is too strong.
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