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West Tennessee
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Posted: Mon Oct 2nd, 2006 06:54 |
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Hi Barb,
Sorry, I can be so confussing. I have been going to a doctor that has been supplementing me with VitD3 for over one year. With no supplementation except in my diet my 25-D level was 39.9. At that time he started me on VitD3 2,000iu qd. That was 5/2/05. A repeat of my 25-D levels on 5/16/06 was 44.2. On that date the doc increased my VitD3 up to 6,000iu qd. I stayed on 6,000iu until the first week in August, when I developed in a lot of discomfort. For one week my doc raised my VitD3 up to 12,000iu. I did get quiet a bit relief that was short lived. During that time I was researching the MP , and on 8/9/06 I stopped all VitD, including any D in my diet.
I hope you now understand my excitment over my latest 25-D level only being 56. I'm very sure it was higher than either of us would have liked to imagined if it were tested just after the 12,000iu time period.
Taking you advice to Continue my Mino at 50mg at q72h. I had some of the most significant herxing today ( the day after taking the Mino.) Thanks so much.
I will register my husband and children as preMP and enter their lab and all under their own user name.
Sorry so late getting back to you. between herxing and raising a teenager, not much time.
Take care of yourself,
West tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 11/2009 <7.0 ng/ml Noirs all outings
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West Tennessee
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Posted: Mon Oct 9th, 2006 08:33 |
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Benicar 40mg q5-6h, Mino50mg q72h
Life is getting way out of control trying to follow this program and raising a teeange daughter, taking care of a home and and everything else life throws at you. I'm not working per say, but I own property and rent out five business on our property.
To the best of my knowledge, I started taking the Mino 50mg q 48h on 9/24/06 and after a couple of doses moved it out to 72h. I seem to herx more as I get closer to 60 hours.
I developed intense pain in my lumbar area one week ago. I've been seen by a chiropractor a few times with very little improvement. He feels it's mainly due to inflammation due to the bacterial infection and pallitive treatment are the best for now.
Two doses ago of Mino 50mg out around 64 hrs, I developed what I call the spots you get in front of your eyes after a flash bulb from a camera goes off. I had no center vision except for cirular bright light in both eyes. I did have peripheral vision in both eyes. It lasted about 2 hours. It happened again, I would say right at the 72hr of the same dose of Mino 50mg. We were eating out and I was very tired. For the first time ever, while the spots were in front of me eyes, I was unable to swallow any of my food. I could swallow liquids.
The swallowing problem has not occured again, but my family has noticed a change in my voice quality. They describe it like someone with a sore throat, but my throat isn't sore.
To move on to my last 72 hour of Mino 50mg, none of the visual distrubances ,nor swallowing problems have returned.I would say I have felt like crap ( hope you can say that) about every hour of every day. My lower back is still hurting and plan on adjustment this week from my chiropractor. I feel like something needs to give. I've not had any good days the last three days.
I have read situations like this and you suggested going up to next dose, and sure enough they would feel better. My next dose for my Mino 50mg will be 12 noon tomorrow. I really feel I need to do something because I continuouly feel miserable. I please need some instruction. This isn't intolerable herxing. I just feeling tired, irritable, sleepy achey and painful back for three days. Not a decent break in three days. Help if you can
West Tennesse
Last edited on Mon Oct 9th, 2006 08:40 by West Tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 11/2009 <7.0 ng/ml Noirs all outings
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Aussie Barb
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Posted: Mon Oct 9th, 2006 09:31 |
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WT
Thank you for your detailed report.. you have been managing your mino schedule well..
re eyes: see FAQ Will Herxing cause increased eye inflammation? If you are concerned please check with your Opthalmologist. It is important to visit a health-professional when you need advice about your eyes.
Tightening of throat muscles, difficulty swallowing are listed as Hypervitaminosis-D Symptoms and have been reported as Herx.. If you are concerned do not hesitate to contact your Dr.
If Dr agrees, to minimise symptoms -can take extra half tablet Benicar (20mg) any time during cycle, or adjust dosage to 40mg Q4H. see also BenicarQuiklink some report that chewing the Benicar gives relief of symptoms faster.
Rest is a very important part of managing and healing..By being pushed to the limit of tolerable herxing our body is working to capacity.. for help in assessing your needs see Tools to check: << please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
and also: there are Herx tracking charts in the Downloadable MP Documents FORMATTED FOR DESKTOP PRINTING
re mino: You have been on this one level for 2 weeks which may be time for you to increase as you have suggested.. see Increasing Tip and symptoms for information.
Let us know if you have any questions. all best, 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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West Tennessee
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Posted: Thu Oct 19th, 2006 14:54 |
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Benicar 40mg q4h, Minocycline 75mg q72h
Hi All,
Started my Mino 75mg on 10/9/06, after generally feeling horrible 24/7. Took first dose of mino 75mg at 7AM and started feeling better later that evening. Increasing my Mino dose from 50mg to 75mg was the right move. Thanks for the good advise.The first couple of doses was every 48h with a few signs of herxing returning. A lot of sleep required, more emotional, on and off periods of increased muscles twitching in most large muscles,mild headaches on and off not lasting very long, continued lumbar pain that at times limited my mobility. Decided to extend out to 72h and observe changes.
As of 10/17/06 I have been on Mino 75mg for 1 week. The main changes I have noticed since I extended the Mino out to 72h is as follows; Continued need to sleep a lot, muscle twitching increase in frequency and at times very strong, a mild vibrating sensation all over my body. The main concerning change to me is a return of skin stinging over my back. I had this symptom before I started the MP, and it resolved within a couple of weeks once MP was implemented.
I am aware that the skin stinging can be caused by hypervitaminosis D. This is my question. Is the return of my back skin burning part of my herxing, or is it more likely an increase in my D level? I have examined my diet closely. The only question I have there is your recomendation for the best brand of yogurt to eat. I am eating Dannon low fat, and I do enjoy it daily with a berry of some type for my sweet tooth.
My other thought, as towards increased D levels, is that I'm not using enough zinc oxide when I have to go out in the sun to pick my daughter up from school. I will try to do a better job with coverage of zinc oxide and see if there is any difference.
I would appreciate a suggestion for the best yogurt for us to eat when on the MP.
I'm planning on going another week with Mino at 75mg unless I start feeling worse, then I'll try going up to Mino 100mg.
Take care to all.
West Tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 11/2009 <7.0 ng/ml Noirs all outings
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Aussie Barb
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Posted: Thu Oct 19th, 2006 19:01 |
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WT
Thank you for posting..
re foods: see FOOD TIPS re Helpful hints and Dairy Products
re Ds: see Vitamin D Tutorial The stores of D should gradually drop, it just takes time. Meanwhile, if you are herxing OK then you will be progressing fine. Just be aware that one day the 25-D will drop, and as it drops you will herx more, and may need to reduce the abx dose. So it is best to have the D measured every 2-3 months. filelink
symptoms: HERXHEIMER REACTION
The effectiveness of the MP against the bacteria that are driving your Th1 inflammation means that your immune system is stimulated to kill the intraphagocytic bacteria. you have been able to identify this response to the antibiotics.
Light exposure: some are reporting that light exposure is increasing their 25D even with the zinc oxide.. covering up is the best protector..
Thanks, all best, 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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West Tennessee
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Posted: Tue Oct 24th, 2006 18:00 |
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GoodMorning All,
Benicar 40mgQ4-5hr Minocycline 75mg q72hr
My last dose of Minocycline 75mg was Friday morning Oct.20 at 10AM. I was planning to take my next dose Monday AM of Oct.23 and this would have been keeping with my every 72hour dosing.
I have had increased emotional stress in my home the last week or so and I been very emotional. This has been hard on my teenage daughter. She's been trying to get here emotions around the fact she may have to go on MP also since she has an elevated 1,25-D level. Her doctor's appointment isn't till Nov.29. I have already started removing Vit D out of her food but other issues such as the sun, she's not ready to deal with at this time.
Due to above problems, I have decided to extend my Minocycline out a few days and just see who I would be without the same levels of Mino for a while.
I am now four days out from my last dose of Mino 75mg. These are the changes in the last 24 hours that I have noticed. No visual disturbances that had become common since 50mg of Mino, not as much back pain, not as much mental fog, and not quite as much difficulty dealing with emotional issues. A few hours yesterday I could have said I felt good. A am still very sleeply. If I allow myself, I think I could sleep 24 hours a day. As compared to some other people, I'm not that sick. Yet, I thought the sleepiness was due to my body's need to rest to heal. Could the Benicar at q4-5hr be causing this? (b/p staying at 80/50) ,or am I trying to move too fast on the antibiotics?
My plan right now is to restart the Minocycline tomorrow, which would be 5 days since my last dose. Is starting back at 75mg ok? A few days off the antibiotics has helped a little, but I don't feel that it's been so great that it is worth not going ahead and start killing again.
So, my questions are, what mg of mino should I start back at, and is it ok now and then to go out 4 or 5 days just to rest for a while, and should I be concerned about my need to sleep so much?
Thanks so much for your help.
West Tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 11/2009 <7.0 ng/ml Noirs all outings
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Aussie Barb
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Posted: Tue Oct 24th, 2006 18:26 |
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WT
Thank you for your detailed posting.. good to see you can see some positives..
As you have only really extended the mino cycle feel free to start back at the same dose or to drop back to 50mg if you feel inclined..
It is fine to extend the cycle every now and then to give yourself a break.. when your 25D drops and your Immune system is fully activated you may not have the same opportunity..
As you have said the sleep is part of the immune response and the healing..
Rest is a very important part of managing and healing.. By being pushed to the limit of tolerable our body is working to capacity. and see this filelink re malaise.
Thanks, all best to you and yours, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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West Tennessee
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Posted: Tue Oct 24th, 2006 20:25 |
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Dear Barb,
So nice to have you out there for all of us during our time of need. I do have one question regarding your response about taking a 4 or 5 day break from antibiotics. You said when my 25-D comes down and my immune system fully activates I won't be able to enjoy like I am now. What will make the antibiotic break so different from now? I was looking forward to the breaks when that time came and knowing things will be harder to balance than compared to today
Thanks again for your time and care.
West Tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 11/2009 <7.0 ng/ml Noirs all outings
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Aussie Barb
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Posted: Tue Oct 24th, 2006 20:47 |
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WT
re when your 25D drops and your Immune system is fully activated you may not have the same opportunity..
ie that is a "may not" as opposed to "will not".. there is no way of knowing for sure.. The 25-D seems to be the most critical factor as to whether the immune system is able to start working.
The antibiotic/s modulate the ability of the immune system to kill the pathogens. Giving a (more frequent or) regular dose often reduces the killing, and folks who cease using the antibiotics sometimes have more, and less predictable, inflammation than when they were using the protocol.
The aim is always to achieve tolerable symptoms.. There are different ways of having a break as you go along.. that will all unfold one day at a time.
How to take a break from the Marshall Protocol?
Thanks, 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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West Tennessee
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Posted: Wed Nov 8th, 2006 04:44 |
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Benicar 40mg q4-5hr, Minocycline 100mg q72hr
Update as of 11/7/06,
Started Minocycline 100mg on 10/29/06. Started out taking Mino every 48hrs. After the 10/31/06 48hr dose of Mino, I increased dosing out to 72hrs. On 48hr dosing, my herxing was tolerable and nothing new. On the 72hr Mino dosing I have had only one new herx symptom, "very uncomfortable substernal pain". Didn't know what to do about it at first so I grabbed the PeptoBismol. It gave me instance relief. As of this date I have had two more episodes with the Pepto helping everytime.
I am continuing with the muscle twitching which increases in area coverage and intensity through out the 72hr Mino period. I'm continuing with visual disturbances but not lasting as long anymore. Still experiencing numbness lasting a few seconds to a few minutes in both the hand and foot on the same side of the body when it occurs, but can alternate sides during the 72hr mino periods. I continue to swing from being anxious to crying, as well as joint pain with some days worse than others.
The one symptom that has occured consistantly over the last month or so has been the need to sleep a lot. About three weeks into the MP my doctor took me off my Armour Thyroid due to my anxiety and worsening insomnia. No blood work was done at that time, but symptoms improved. My TSH on 2/8/06 was 3.77. On 11/6/06 my TSH was 6.34.
Do you see this hormone change occur very often? I was under the idea that your need for thyroid medication would lessen over time, not increase. I will see my doctor 11/9/06 for med adjustment. I would like your opinion on this matter before my doctor appointment if possible.
I will be having my 25-D redrawn next week. Hoping to see a decrease from the 25-D of 56 drawn back on 9/20/06. I'm getting close to the end of Phase 1. You had said earlier that you didn't like to see people go on to Phase 2 unless their 25-D was below 20. Am I correct with this thought? I am able to tolerate the Mino 100mg herxing without problem except for the excessive sleepiness. I'm sure this will be corrected with the thyroid medication adjustment.
Please let me know how you want me to proceed from here in reguards to moving on to Phase 2.
One more quick question. I will be having a spiral CT of my lungs in the next few days. Is there any problem with them using contrast dye with this procedure while on MP?
Thank you for your time and guidance.
West Tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 11/2009 <7.0 ng/ml Noirs all outings
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Aussie Barb
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Posted: Wed Nov 8th, 2006 08:10 |
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WT
Thank you for your post.
When you take the pepto, make sure it is well away from your mino.. because it can interfere with the absorption. some find milk thistle helpful for R upper quadrant, but that may be not be helpful to you.
25D test: There is no need to retest the more expensive 1,25-D..
As your body goes through the immune response, killing the intraphagocytic bacteria and healing - you can expect hormone fluctuations.
Dr. Marshall has created a diagram summarizing some of the key relationships between the body's hormones and 1,25-D.
You can access it at http://autoimmunityresearch.org/hormones.pdf
For detailed Information to discuss with your Dr see THYROID DISEASE and Th1 inflammation. sleepiness can also be an immunopathological response.. HERXHEIMER REACTION
see also: How can I control my anxiety and depression?
What is a neuro Herx?
re CT scan: To discuss with your Dr: What tests do I need to monitor my progress on the MP? says in part: If you wait until you are further along, your tests will improve. As treatment continues, the presence of the Herxheimer reactions confirms the continuing efficacy of treatment. And finally, symptom resolution, absence of Herxheimer reactions and normal blood work indicate recovery.
see this FAQ Where can I find phase two and three? for information re sending an email for the Phase 2 Questionnaire to fill and return.
and you will be given feedback and access to the Information. and ...
We then encourage you to begin a new progress report in the Phase 2 forum to discuss recommendations re the new meds and dosing in preparation for your Dr visit. If your 25D continues to be high, we recommend the Modified Phase Two. Thank you.
Thanks, all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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West Tennessee
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Posted: Tue Nov 28th, 2006 16:05 |
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 Benicar 40mg q4-5h, minocycline 100mg q72h
Reaching my third month on Phase 1. I've received my Phase 2 questionaire and retured it yesterday. Wondering how long it will be before I hear back? My latest VitD-25 was 29. This has come down from 56 in the last 2 months. I am happy to see the drop because I have really worked hard following the guide lines.
I'm concerned I may still have to do a modified Phase 2 because of the 25-D level was 29. At this point I don't even know what a modified Phase 2 is, but hopefully it will all be explained to me. I hope I hear soon about my changes to Phase 2 because I have now been at Mino 100mg for one month and very little herxing is occurring. I still have a lot of fatigue, some mental fog , but is getting better. I still feel the muscle twitching. Not sure if this is getting less or if I'm just getting use to them.
I hate to bring on more and or new herxing with the Phase 2 over the Holidays, but my family all agree they want me to keep working towards the finish line. I hope to have more energy next X-mas because I do love the season when I have energy.
A very large accomplishment I have had lately is being able to sleep some nights without a sleeping pill. It will be a year in Jan. that I have had to take a sleeping pill every night to sleep. I did have to start back on my thyroid med due to my latest lab test. Hope this will help with my energy level.
Wishing enough energy for all this busy season.
West Tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 11/2009 <7.0 ng/ml Noirs all outings
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West Tennessee
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Posted: Thu Mar 12th, 2009 05:09 |
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Alumni forum Update
Phase 3 meds. Benicar 40mg q4-6hr
First I want to say THANKS SO MUCH for the HAPPY BIRTHDAY wishes. It means so much. Not that I'm a year old, but one more year on MP. This Aug. will be 3yrs. I really feel my anniversary date for 3 yrs will be Dec. 2009 since I started out with such an elevated 25-D due to MD supplementation for joint pain. I know it was worth starting even with an elevated 25-D because I had IP present but really kicked in around Dec.2006.
light exp: only wearing Noirs. No zinx oxide this winter but may start back this summer. Not out much during day,most in the evening
palliative meds: oxycontin 40mg prn back pain, Valium 10mg prn anxiety, Lyrica 100mg qd for fibromyalgia syndrome.(decreased from 300mg qd and doing fairly well, much less fliud retension)Synthroid 50mcg qd (a lot of trouble balancing TSH levels in therapeautic range through out all phases of MP
Symptoms: This is my third attempt to go full strength Z (day 1 of cycle)
Anxiety level 0-8(believe this has to be effected by wide ranges in TSH levels)Valium, and if real bad oxycontin helps
Muscles twitching level(0-6) stronger than with any other combo
Fibromyalgia level(0-5) better control with higher Lyrica but didn't like side effects with higher level of 100mg tid, now at 50mg bid and doing ok. Oxycontin helps with this discomfort and the anxiety.
Back pain level (0-8) very simple movement can set it off or nothing I'm aware of sets pain off. Rest, ice packs, Valium and Oxycontin helps control.
No pain in knees, wrist nor any other joints except back. This is great improvement.
Brain fog level(0-3 ) months of improvments seen in this area. Back pain makes it hard to focus, but this would be the same for most anyone.
fatigue level(0-4) good if TSH levels are in normal range. Overall significant improvement seen in increased energy levels
weight: Oct.2008 weight 184lbs, today 157lb. SWEET!!! Following MP diet and as promised--- weight just started to decrease as bacterial load has decreased. Didn't even miss my birthday cake!!!
Plan : to continue rotating abx as IP stops or greatly improves. Plan to continue with No plans to stop insight just to see how healthly I really can be.
I see a BIG light at the end of this tunnel now, so for anyone in doubt-- hang in there, this really does heal you---I'm living well proof.
A gift of patience to all on MP
West Tennessee
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Lyme Ph1Aug06 Ph2Dec06 Ph3Feb07 25-D 11/2009 <7.0 ng/ml Noirs all outings
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