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Posted: Tue Nov 29th, 2005 14:02 |
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Sharon,
Many members have reported similar symptoms as being due to the Herxheimer reaction. I would encourage you to slow down your mino ramping schedule. If these symptoms are intolerable you can take low dose mino more frequently. See:
My Herxheimer reaction is too strong. What should I do?
Please note the new recommendation regarding reduced dosage of Benicar for intolerable symptoms.
Do you think your weight gain is related to an increase in food intake? This sometimes happens when we eat to console ourselves because we don't feel well. If you think your weight gain is due to an increase in accumulated fluids and you have swelling (edema), please consult your doctor.
Best,
Meg
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Tue Nov 29th, 2005 15:50 |
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Meg.......thanks for your response.
I am not eating more, but I am not getting any exercise either, as I spend a lot of time in bed or just "lounging".
I used to try to browbeat myself into doing yoga, or stretching, or something; but after reading the MP for a year or so, I gave up trying to push myself to do anything. I figure I'll make up for it when I'm well, as I was always an extremely energetic, physically active person.
I do have some abdominal bloating, but the weight gain is above and beyond that.
Some of the things I liked (eggs, fish, etc.) are out for the duration. So I do eat more cheese. I can't get with the plain yogurt program, but I have found that Stoneybrook Farms makes a 50% less sugar variety. The D-less milk that I like is often unavailable in skim or 1%. So I usually end up with 2%.
So it looks like a combo of lack of exercise and eating about the same but with more calories.
Thanks for helping me think this through..........................Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Foundation Staff
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Posted: Tue Nov 29th, 2005 21:16 |
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Sharon,
You are wise to listen to your body and rest if you need to. When you recover, your enthusiasm for activity and exercise will return. In the meantime, look for low calorie ways to satisfy your nutrition needs and appetite.
You can add Splenda-sweentened, flavored drink powders to plain, lowfat yogurt for a low calorie dairy treat. Fruity herbal teas sweetened with Splenda can fill you up and tide you over from one meal to the next.
Check out the many lowcarb websites for other ideas about foods that will help you lose or maintain your weight while you are inactive.
Best,
Meg
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Wed Nov 30th, 2005 01:53 |
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From Meg
You can add Splenda-sweentened, flavored drink powders to plain, lowfat yogurt for a low calorie dairy treat. Fruity herbal teas sweetened with Splenda can fill you up and tide you over from one meal to the next.
Wow! I did not know that Splenda made flavored drink powders. Would that be only in health food stores or at regular markets?
Same question for fruity herbal teas........and which brand/variety would you suggest?
Thanks............Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Foundation Staff
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Posted: Wed Nov 30th, 2005 02:21 |
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Sharon,
Splenda is manufactured by Tate & Lyle PLC and is the brand name for the artificial sweetener sucralose. It is sold in stores as Splenda to use in recipes. It is also sold to manufacturers of other products that are sweetened with sucralose.
You can find powdered drink products sweetened with Splenda in your grocery store's beverage aisle. Herbal teas are made my many different companies and can be found next to the regular teas in your supermarket. You can get a variety package to see which ones you like. My current favorite is cinnamon.
Best,
Meg
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sat Dec 3rd, 2005 21:15 |
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WEEK 34 OF INTERRUPTED PROTOCOL - One week since last post
Mino 25mg-7 weeks; 50mg-4 weeks; 75mg-3 weeks; back to 50mg-1week
I had to go back to 50mg mino because of intolerable herx on 75mg, but the herx on 50 was even more intolerable. Yesterday I went to 25mg mino Q24H.
From Meg:
Please note the new recommendation regarding reduced dosage of Benicar for intolerable symptoms.
Meg....I must have missed this. I thought increasing Benicar was in order for intol. herxing. Where can I find this info?
Thanks......Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Posted: Sat Dec 3rd, 2005 21:31 |
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Sharon,
The info you are looking for is in:
My Herxheimer reaction is too strong. What should I do?
Best,
Meg
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sat Dec 3rd, 2005 23:36 |
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*Benicar- If intolerable Herxing remains uncontrolled by the above measures, a reduced dose of Benicar (but no less than 20mg every 6 hours) should be trialed.
Thanks, Meg............I was reading "My Herx reaction is too strong" from an obviously old print-out. I didn't know it had been changed. I feel hopeful about trying the reduced amount, as the other two methods have not helped. For any future research, I felt bad on Benicar from the very beginning; so maybe there is a correlation.
I skipped right over this from your Nov 29 post to me:
Please note the new recommendation regarding reduced dosage of Benicar for intolerable symptoms.
Pardon my brainfog......................Sharon
Last edited on Sat Dec 3rd, 2005 23:45 by ShrnHml
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Foundation Staff
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Posted: Sun Dec 4th, 2005 01:23 |
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Sharon,
No need to apologize for brain fog. It seems to go with the territory. I'm sure it bothers you more than it does us.
I'm glad you found the info on Benicar. This gives me a chance also to remind folks that we are constantly adding and editing the materials on the website. With the exception of the MP phases/guideline documents (which are only changed by Dr. Marshall), not a day goes by that we don't add something somewhere.
It's great to print out info to have it handy but for the most up-to-date information, members need to read the website daily. If you are directed to a paper you've already read, give it another read. Comprehension is usually better the second time around and it may have something new added.
Our members are continually coming up with new questions that add to our knowledge of Th1 inflammation. I thank them for helping me to learn something new every day.
Best,
Meg
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Dec 4th, 2005 04:10 |
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Meg.........I assume I should reduce the Benicar only to the point where herx is tolerable....and then get back "on schedule" with B and M.
I assume also that I should stay on the maintenance dose of M while B is lowered.
Since most of my time on the MP has been intolerable or close to it (I'm incapacitated about 80% of the time), is it possible that I need to lower the B and M for a longer period?
Does the fact that I've been sick for 25+ years mean I have more bacteria in my body and thus could expect more intolerable herxing and/or a longer cure time?
TIA....................Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
Member in Phase 3
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Posted: Sun Dec 4th, 2005 05:00 |
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Sharon
as per the new info re Benicar from Dr Marshall's most recent paper due for completion in approximately 2 weeks - you and your Dr may be interested in trialing a reduced dose of Benicar (but no less than 20mg every 6 hours) ... If it is better... you can stay at that dose. and if it isnt, it is easy to revert to the full dose again..
Once you have established your new Benicar dose you will be able to assess what you need to do re your mino dosing.. tolerable is the aim.. adjusting the dose and schedule as required to achieve that.
It may take folks with a large bacterial load a long time to recover, but there is no way of knowing for sure. CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL says in part There is definitely a variation in the effectiveness of various antibiotics in patients. The factors seem to be:
1. Patient's prior exposure to the antibiotics
2. Strength (or weakness) of the patient's own immune system
3. Species of bacteria present
4. Concomitant health problems - eg kidney failure
5. Concomitant infections - eg fungal, viral
6. Medications being taken by the patient
see also How long does the Marshall Protocol take?
Why does the Marshall Protocol take so long?
What degree of healing is possible using the Marshall Protocol? A description of what to expect on the road to recovery, treatment endpoints, and the gap between the public and medicine's perception of successful treatment.
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Dec 11th, 2005 02:12 |
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WEEK 35 OF INTERRUPTED PROTOCOL - Mino 25mg QOD - 7 weeks; 50mg QOD - 4 weeks; 75mg QOD - 3 weeks
11 days since last post
From Meg:
I would encourage you to slow down your mino ramping schedule. If these symptoms are intolerable you can take low dose mino more frequently. See: My Herxheimer reaction is too strong. What should I do? Please note the new recommendation regarding reduced dosage of Benicar for intolerable symptoms.
I am still in intol. herx. Here's what I have done:
- 10 days ago reduced Benicar to 20mg Q6H and mino to 50mg Q48H
- 5 days ago reduced mino to 25mg Q24H
- 2 days ago reduced mino to 25mg Q12H
This last reduction seemed to make me feel even worse, so I did not feel it a good idea to reduce mino to 25mg Q6H.
So I feel betwixt and between:
- Can't go up because I probably was going too fast from 50 to 75 mino per Meg's observation
- Can't go down because shorter intervals seem to make things worse
- Past experience has shown that my immune system is one that stays turned on
Since it doesn't seem like things can get much worse, I'd like to try stopping mino for a while and letting the "extended" herx run its course. As Barb says, Phase 1 is a training ground.
There is no doubt in my mind that the MP will work for me, but it's discouraging to see all the people who started when I did now well into Phase 2....AND to see people who started months after me now into Phase 2.
Since getting CFS, I have been hyper-responsive to meds. For instance, I take Effexor at way below normal dose, and it does its job. For the first five years I took it at just 25mg/day and was delighted with the results.
I have read all the articles on reducing herx or intol. herx several times, but brainfog may have prevented me from seeing just that piece of info I need.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Sun Dec 11th, 2005 02:20 |
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Sharon
re: 2 days ago reduced mino to 25mg Q12H ....This last reduction seemed to make me feel even worse, so I did not feel it a good idea to reduce mino to 25mg Q6H.
If you try taking 50mg mino again and see how long that will take you to.. to see if it is more tolerable.. to see if you can go to Q12H or Daily eg..
and also please send for the questionnaire as per this information..
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Dec 11th, 2005 03:36 |
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If you try taking 50mg mino again and see how long that will take you to.. to see if it is more tolerable.. to see if you can go to Q12H or Daily eg..
Thanks for the response, Barb. I need to check my understanding due to brainfog: I am to try 50mg mino Q24H or Q48H?
I feel like I'm no longer anonymous with a picture!
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Sun Dec 11th, 2005 03:44 |
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Thanks Sharon, good to see your pic,
If you try taking 50mg mino again and see how long that will take you to.. to see if it is more tolerable.. to see if you can go to Q12H or Daily eg..
If it holds you to 12H tolerably, good, if it holds you to 24H tolerably, good, if it holds you to 48H tolerably, good.. the aim is to use the dosing and schedule that achieves tolerable herxing most easily..
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Dec 11th, 2005 03:53 |
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| Many thanks!
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Dec 11th, 2005 05:46 |
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Barb....I take my mino at night just before bedtime which is coming up in an hour or so. Just so my brainfog (very bad right now) does not sabotage me........
- I should take 50mg tonight and 48 hrs later.
- If that keeps me from intol herx, fine.
- If not, I should go 50mg Q24H.
- If still intol. I should go 50mg Q12H.
Do I have it right?
Thanks.....Sharon
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Sun Dec 11th, 2005 06:54 |
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Sharon
If you are taking the mino 50mg, you will know by your symptoms you are experiencing how long you yourself are able to comfortably go between doses and if it is tolerable.. dont push past intolerable trying to reach any time schedule.. 100mg is the max total mino per day recommended by Dr Marshall when taking Benicar..
Have you trialed the lesser dose of Benicar to see if that makes a difference... I see your sig line says 20mg Q4H not 20mg Q6H..
dont hesitate to get back to us..
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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ShrnHml
Guests visiting Phase 1/2/3
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Posted: Sun Dec 11th, 2005 07:24 |
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"Have you trialed the lesser dose of Benicar to see if that makes a difference... I see your sig line says 20mg Q4H not 20mg Q6H.. "
Hi, Barb.........yes, I have been at the lower level of Benicar for 10 days (20mg Q6H), and I asssume I should stick with this. ?????
My old sig line was a shorthand way of saying that I was taking....uh...uh...I can't remember, but it was 120 total for the day with 40mg at night for 8 hrs sleep.
This is so strange (not being able to think, organize, etc.). I know I need to change my sig line to the new lowered dose of B. It seems such a difficult task at this point, whereas at another point it was a snap. I will do it as soon as my brain is working better.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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Posted: Sun Dec 11th, 2005 08:01 |
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yes, I have been at the lower level of Benicar for 10 days (20mg Q6H), and I asssume I should stick with this. ?????
Sharon
If the lower dose of Benicar is making it better for you, you stay with it.. if it isnt, you can change..
as you are having difficulty knowing at the moment, you may wish to change back and trial Benicar Q8H or Q6H or Q4H for awhile and see if you do any better on that.. it is a matter of trial and error to see which works best for you..
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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