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Posted: Wed Sep 26th, 2007 19:41 |
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| For Dr. Marshall's comments, see Rife machine and Bromelain.
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Anne Scott
Member in Phase 3
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Posted: Sun Sep 30th, 2007 01:11 |
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Mino: Since Sept. 18. 50mg. every 2 and 1/2 days.
Benicar: Since August 30. 40 mg. every 6 hours.
Quercetin: 20mg. once in a very great while. (2 times per week...)
All MP suggestions being used and in place (Noirs, light avoidance, vit. D omitted from diet, etc.)
Exercise: moderate walking every day; nothing else.
Symptoms: IP/Herx symptoms that lots of other people seem to be having at my stage of things -- tightness in throat/jaw, dizziness, occasional rapid heart beat/pounding that starts when I stand up too fast, but goes away when I sit down, muscle weakness (when I have to use my arms and hands above the level of my heart for any normal activity), sharp pains in upper spine, wrists, arches, a kind of "fake" Raynaud's syndrome in hands. Strongest symmptoms: mostly dizziness/faintness when I stand up too fast, or stand too long, or have to project my voice too much when teaching my classes, and muscle weakness in arms/shoulders when I have to carry something or use them above the level of my heart.
I've read the postings on low blood pressure and cardiac herxes, so I'm informed on that account.
Improvements: I can count on my symptoms decreasing (but not completely abating) for 3-6 hours before I take the next mino. dose; salty foods help; somewhat less brain fog (but the jury is still out on that one).
One other thing: I caught a cold; have had symptoms for 2 weeks; the symptoms have been mostly mild, but I'm looking forward to its being gone.
That's it for my report. Nothing else to add. Thanks for listening.
Anne
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VEZ R.N.
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Posted: Sun Sep 30th, 2007 01:58 |
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Anne, thanks for posting,
It is difficult sometimes to distinguish a cold from immunopathology, this may help. SEE: My doctor thinks I have an upper respiratory infection. What should I do?
(Sinus infection, cold, flu, pneumonia, bronchitis)
Is it an allergy or is it a Herxheimer reaction?
My breathing is worse. What should I do?
Symptoms of pneumonia, sinus infection, cold, flu, ear infection or bronchitis are often due to Th1 inflammation and the Herxheimer reaction.
Dr Marshall wrote: "The MP will make no difference to the course of a cold. If anything, it will allow the immune system a better chance to fight the virus. On the other hand, flu-like symptoms are a very common manifestation of immunopathology. They come and go more quickly than a viral cold does."
Hope this helps. Take good care of you.
Best Regards, VEZ
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Anne Scott
Member in Phase 3
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Posted: Sun Sep 30th, 2007 03:27 |
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Dear Vez, thanks for the response, and for the info. about links.
I'm fairly certain I caught the cold that my son had; same symptoms (stuffy/runny nose, little bit of cough). They're going away and the symptoms have been mostly mild. As for the dizziness, faintness, weak limbs upon standing, heart palpatations, etc., these seem to be IP responses, and they've been more or less present since I upped my dosage of mino. The dizziness/faintness seem to improve with benicar. And I've had heart and blood pressure irregularities for the past 3 years (of a now-almost-nine-year-bout of Bb.), so I'm assuming that the MP is now targeting the CWD infection in that area. Strangely enough, I'm glad for these symptoms, because they're an indication of IP and the MP working (though I wish I weren't dizzy or short of breath, to be sure.)
Thanks for the helpful email.
Anne
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Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
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Toni D
Moderator
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Posted: Sun Sep 30th, 2007 06:51 |
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Hey Anne,
I'm sure Vez will respond to you shortly, but have you tried extra Benicar for your increased symptomatology yet? I will try to find the correct link and post it for you to read.
Feel good and be blessed, Anne.
ps--http://www.marshallprotocol.com/forum32/1420.html
Last edited on Sun Sep 30th, 2007 06:59 by Toni D
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 25D=26, 1,25D=38| 07/07 25D=<4| BeniQ6H 09/27/05| ModPh2 07/06; Ph2 09/07|Ph3 04/08| 12/08 25D=<4| 05/09 25D=<4, 1,25D=27
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VEZ R.N.
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Posted: Sun Sep 30th, 2007 07:01 |
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Anne,
The first recommendation to minimise any symptoms as follows:
If your Dr agrees: to minimize symptoms at any time, we recommend taking an extra half tablet (20mg) Benicar any time during the cycle, or adjust to 40mg Q4H until symptoms decrease to tolerable.
SEE: also BenicarQuiklink many Members report chewing Benicar and placing under the tongue for faster absorption and relief.
See also: My breathing is worse. What should I do?
What should I know about respiratory immunopathology?
Anne, also helpful to lay low, decrease any physical expenditure of energy to laying down until symptoms pass. Your body is working at the maximum just trying to heal.
Take good care of you,
Warm Regards, VEZ
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Anne Scott
Member in Phase 3
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Posted: Sun Sep 30th, 2007 07:01 |
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Hi Vez,
I'm sure that extra Benicar would help a lot. I am waiting on a shipment from Canada, due to arrive this coming week. (Insurance still wavering about covering the 120 pills per month that I need; frustrating to go from small prescription to small prescription, with the gaps in between that leave me with none for a few days at a time...sooner or later, this will get resolved and then I can have all the Benicar I need, when I need it, even if I have to self-pay.)
Thanks for asking.
Be well.
Anne
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Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
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Anne Scott
Member in Phase 3
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Posted: Sun Sep 30th, 2007 07:02 |
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Sorry, I meant Toni, not Vez in that last note!
Anne
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Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
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Anne Scott
Member in Phase 3
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Posted: Sun Sep 30th, 2007 07:13 |
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Thank you, Vez, for the good suggestions. I've posted an email to you and Toni about the extra Benicar situation. (I'm waiting from a shipment from Canada due to arrive this week. I've had to go from small prescription to small prescription with these frustrating gaps of a few days in between each prescription, but when I hear from Blue Cross this week as to whether they will accept my appeal, then I can act on this knowledge and remedy the situation either by having Blue Cross pay for the whole amount every month or by self-paying for 3 months out of every 4. The forthcoming Canada shipment is a self-pay prescription that will keep me going until the insurance gives me word one way or the other. Then I can finally arrange one way or the other to get what I need for extra 20mg. doses when necessary.) All I know is that the Benicar works very well and that it's crucial for me to have a consistent/constant supply on hand. I'm delighted by my progress so far and want to keep the momentum going. In the meantime I'm handling my symptoms ok.
Anne
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Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
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Anne Scott
Member in Phase 3
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Posted: Fri Oct 5th, 2007 06:15 |
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Update:
50mg. mino every two to two and a half days, for 2 weeks now.
40mg. benicar 4 times a day, since end of August.
Two questions, please:
1. I've been on the 50mg. mino now for approx. 8 doses. The IP is fairly predictable, and it's (mostly but not completely) resolving now in plenty of time before the next dose. Am I ready to go to 75mg every 48 hours? Just point me to the link if necessary. Thanks.
2. The Benicar seems to have given me a chronic runny nose. I have no more cold; that's all better. I'm not sick (except for this TH1 illness). The discharge is clear. I have no itchy or watery eyes or sneezing, indicating an allergy or a virus. I've never had any seasonal air-borne allergies to speak of. And it seems worse every time I take the Benicar. Is this a side effect of the Benicar/is it something that I need to worry about, or will it lead to worse side effects? It doesn't seem to me to be related to any IP as far as I can tell. I want to last through the entire 3 phases of the MP but admit to being somewhat concerned about this symptom because it never seems to go away (unless I stretch out my doses of Benicar to 8 hours, which lets it diminish a little before I take the next dose). I've always handled occasional allergies by taking enough Vitamin C to help me (3 grams a day), but I know that this is verboten. Any feedback would be appreciated.
3. Will taking an extra doses of mino. help with the kidney-area back pain that I've developed? How might I take care of my kidneys during this long treatment? Poultices?
This is my 1-month anniversary! Umpteen more months to go, but I'm motivated...
Thanks.
Anne
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Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
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Foundation Staff
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Posted: Fri Oct 5th, 2007 07:48 |
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1) According to the Phase One Guideline, "1. Increase the (every other day) Minocycline slowly in small, 25mg increments. 2. Allow a week or more between increased doses to make sure the Herx reaction is not more than the patient wishes to tolerate." So, the answer is "yes".
2) The runny nose is not a side effect or allergy and Benicar is only indirectly to blame. Immunopathology gets the credit, even though there is no pattern. Many folks with formerly stuffy noses, report this new (and soomtimes welcome) symptom.
3) Flank pain has a variety of causes, some unrelated to the kidneys. You can adjust MP meds and adding an extra dose of mino is one way to do that. If efforts to reduce immunopathology are ineffective you can treat intermittent pain with pain medication. Monitoring kidney function will let you know if immunopathology needs to be slowed down while the MP is 'taking care' of your kidneys.
Happy one month anniversary!
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Anne Scott
Member in Phase 3
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Posted: Fri Oct 5th, 2007 18:37 |
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| thanks!
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Anne Scott
Member in Phase 3
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Posted: Sat Oct 20th, 2007 20:51 |
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Benicar: 40mg. every 6 hours.
Mino: 75mg. every 48 hours, for 2 weeks now (so, 7 doses total).
MP requirements: All in place (glasses, avoidance of sun, avoidance of vit. D, etc.)
Symptom pattern: While on 25 and 50mg. dosages, the pattern was fairly clear to pick out. (1) While on 25 mg. my symptoms got gradually worse so that it was clear I needed to move to the higher dose. (2) While on 50 mg. my symptoms became strong on the 1st day, then strong on the 2nd day, then tolerable on the 2nd and a half day, then very tolerable for a good 8 hours before the next dose, indicating that I was ready to move to 75mg. (3) While on 75mg. the symptom pattern has been quite a bit harder to assess. Here is what I notice:
- One set of IP symptoms (sharp pains in neck, nerve ganglia in hands and feet, cold hands/feet, heart pounding, etc.) has set in fairly quickly after taking the 75mg. dosage, which lasts 8-18 hours or so;
- This set of IP symptoms changes or is replaced by 2nd set of IP symptoms (muscle weakness, back/flank pain, intermittent pounding heart, mild brain fog, flu feelings) that has seemed to last almost up to 48 hours, the time for the next dose.
- Taking the next dose right at 48 hours puts me back to the first set of IP symptoms, followed by the second set of IP symptoms, and so on and so forth,
- But now, 14 days into this 75mg. dosage (i.e., for a total of 7 doses), the symptoms aren't resolving and seem to have gotten quite a bit stronger, especially the flu symptoms and back/flank, and muscle weakness issues.
- Adding dose of Benicar or taking it more frequently seems to help a little, but also creates its own set of IP symptoms, namely chills/malaise/queasiness 1 hour after I take it.
- Taking Mino. more frequently doesn't dampen symptoms: it just re-sets the IP pattern described above so that I'm back with set number 1 of the IP symptoms shortly after I take the Mino.
I will try the following: (1) waiting a full 3 days to see if my symptoms resolve (I have 1 more day of these 3 days to wait it out...) OR: (2) I could also try decreasing Mino. to 50mg. to see if this helps, then going back up to 75mg. Since extending the wait from 2 to 2 1/2 days has helped me in the past, I'm hopeful that waiting 3 days will get me back on track. If it doesn't, then I'll try a lower dosage of mino. for a day or two. If that doesn't help, then I have to assume that I need to go to the 100mg. dosage.
Right now, it feels as though my immune system is stuck, full throttle, in the "on" position.
Question: are we supposed to consider moving from one dose level to the next after 14 days, or after 14 days of doses? In other words, do we consider ramping the dosage after 2 weeks encompassing 7 doses, or 4 weeks encompassing 14 days (2 weeks) of doses?
Thanks in advance for any advice/pointers.
Anne
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Anne Scott
Member in Phase 3
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Posted: Sun Oct 21st, 2007 04:03 |
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One more posting for the day (please see prior posting for all my ABX/symptoms to date).
I have eliminated virtually all sources of vitamin D in my diet. As I do look at the "lists" on-line that are posted with amounts of vit. D listed for certain foods, I never see seaweed/kelp/etc. on these lists. I can only assume that the amount of Vit. D. in kelp, etc., is quite low and/or I'd have to eat a boatload of kelp to cause a negative impact. Even when I Google the words "kelp seaweed vitamin D," I find websites that make mention of Vit. D in kelp but never list Vit. D amounts in these foods, making me think the amounts must be very low. Can someone tell me whether I'd be sabotaging my diet by ingesting small amounts of vit. D through kelp/seaweed? It tastes so good in soups, and because I'm ingesting no supplemental minerals to speak of, this might be a nice way to get a few minerals into my diet inocuously (that's the key word: inocuously).
Also, I'm almost 6 feet tall, weighing only 130 pounds or less; I've lost weight on the MP, which I'd rather not do, since I'm already slender enough as it is. Since I've eliminated fish/eggs/pork from my diet, I'm looking for ways to get not only the calories I need but the flavor into my foods that make it taste a little better and less bland. Adding a little bit of kelp/seaweed as a condiment may not be so bad, no?
THanks for any advice in this area!
Anne
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Foundation Staff
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Posted: Sun Oct 21st, 2007 23:48 |
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While on 50 mg. my symptoms became strong on the 1st day, then strong on the 2nd day, then tolerable on the 2nd and a half day, then very tolerable for a good 8 hours before the next dose, indicating that I was ready to move to 75mg.
If your symptoms were strong at any time during the period between doses, it is too soon to ramp up the minocycline.
Kelp is discussed in our Food Tips thread. If your 25-D is high (please post it in your signature line), you will want to avoid this source of vitmain D.
Please see I’m losing weight. What should I do?
It's all a learning experience. Let us know how it goes........
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Anne Scott
Member in Phase 3
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Posted: Mon Oct 22nd, 2007 00:31 |
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Thanks, Meg,
now that I have clarification about when to move on to the 100mg. dosage, it looks as though I need to stay at the 75mg. dose for a while, since, indeed, my symptoms were sometimes strong during one phase or other of the 50mg. trial period. I didn't realize that I was aiming to eliminate ALL strong responses during a particular dosage. I thought I was just aming to find SOME tolerable window in that period.
I'll report back in a week to let you know whether my symptoms have diminished across all phases of the 75mg. dosing. (Hope they do!)
In the meantime, I hope to try to find ways to fatten myself up...
Anne
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Joyful
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Posted: Mon Oct 22nd, 2007 01:08 |
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Anne,
I vote for cheese and chocolate!
Thinking about your pace of progress, I was reminded of a post by Amy (screen name Ames) when she was a little further along than you are:
While I'm at it I'll add a few other things....
If you do read my progress report (have fun!) please don't use the way I ramped up my abx as any sort of guide! Granted, my immune system was not functioning properly during much of early Phase II, but I hardly even gave the lower doses a chance. Big mistake.
Each level of abx tends to generate different types of herx, and there is no doubt that I missed out on a lot of important herx by ramping so quickly. I'm pretty sure that if you ramp up as fast as I did you will end up doing what I am doing now...which repeating these doses at a later date.
Also, I was reading over my progress report and realized how chipper I sound during almost all of my posts. In the real world, I tend to focus on the positive aspects of my progress and keep my negative symptoms to myself. This is in part because I strongly dislike pity.
I realize that I approached my progress report the same way. I basically glaze over most of my symptoms and hardly ever discuss the times when I felt quite bad. This positive approach may work ok in the real world, but is probably not very helpful to people who are really trying to analyze and learn from my posts.
Basically, I can tell you that I was herxing very strongly and suffering a great deal during all of Phase II. I just don't want other people with CFS to read over my posts, wonder why they seem to be suffering so much more than me, and think something might be wrong . I was hurting pretty bad!
Alright, I think that's it!
Amy (The whole thread is a very good read because of her lessons learned commentaries.)
Anyway, be kind to yourself
and enjoy the snacks!
~Joyful~
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Anne Scott
Member in Phase 3
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Posted: Mon Oct 22nd, 2007 02:42 |
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Hi Joyful,
thanks for the helpful post from Amy. I had erroneously thought that I should ramp up the ABX when I was able to achieve a partial window of tolerable symptoms during the lower dose. I didn't realize that I was supposed to have ALL intolerable symptoms morph into tolerable ones before progressing. Live and learn.
As for cheese and chocolate: therein lies the reason I'm losing weight: I came into the MP being allergic/intolerant to all forms of milk (including goat's and sheep's), all forms of citrus, and all forms of grain except rice. Moreover, I am deathly allergic to chocolate, alas. So, now that I've had to abandon other foods because of the vit. D issue, my regular diet and my snack foods are very very limited. But I'll figure out something. I'm nothing if not creative when it comes to solving these problems...
Thanks
Anne
Noted
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Anne Scott
Member in Phase 3
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Posted: Wed Oct 24th, 2007 08:15 |
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Update:
Benicar: 40mg. 4 times a day, since August 30.
Mino: 75mg. every other day for 8 dosages (16 days) (but see below).
Vit. D tests: Hope to get these out of the way in the next week. Have never had the test up to this point (because the therapeutic probe seemed to indicate everything I needed to know for the time being).
MP requirements for light avoidance, glasses, vit. D avoidance, etc: I'm following these requirements to the best of my ability.
Symptoms: strong IP symptoms now, for quite a while, no remission: meninges in upper spine inflamed; connective tissue in upper spine and shoulders inflamed; sinus pain, nasal passages somewhat stuffy, brain fog, weak arms, minor heart pounding, jaw muscle pain and tension, dizziness and faintness if I have to project my voice too much, difficulty chewing and swallowing, difficulty talking for more than a minute at a time due to tightness in throat, earaches, bachache, panting, memory problems. Most symptoms are concentrated in nerves, muscles, and organs from the shoulders on up.  
Symptoms made worse by heat (showers), which I'm now avoiding like the plague, and by physical activities that put even the slightest stress on my neck, jaw, arms, or back, which I'm also trying to avoid, but can't, completely (i.e., carrying a briefcase to work; doing light vacuuming, grading papers, bending over to pick something up from the floor, etc.)
Dear Barb, Meg, Janet:
Please and thank you: I'm hoping that someone can help me figure out the next step to take. I've waited now 3, almost 4 days between my last dose of 75mg. Mino. and the next, and have noticed that the IP on the 3rd day was even stronger than the IP on the 2nd day, by a long shot. With no end to the IP in sight, I decided to take a 25mg. dose of Mino. to see if I could dampen symptoms. This dose dampened symtoms for about 2 hours, but the IP has started up again just as strongly as before. Avoiding light altogether helps with minor feelings of stress and anxiety, but doesn't do much, if anything, for the symptoms listed above. Taking an extra half tab of Benicar doesn't do anything that I can tell. Taking Benicar more frequently helps about 10%.
Based on the account above, I don't know whether I'm getting "signals" to move to the 100mg. dosage, or whether I need to go backwards to repeat some steps in the 50mg. dosing range. When I moved from 25mg. to 50mg., the move was relatively simple: my symptoms were very clearly resolving a good while before the next dose, and I actually felt GOOD after the IP resolved and the next pill was due. Moving from 50mg. to 75mg. also seemed less complicated as well, because I definitely had healthy-feeling portions of days between each of the doses (and was actually smiling frequently, one of my favorite pasttimes); but I do have to say that my symptoms were certainly more strong on the 50mg. doses than on the 25mg. doses. I assumed that I was ready to move to the 75mg. level because I had about 4-6 hours prior to the next 50mg. dose during which time I felt pretty good. However, on this 75mg. level, I've only felt worse and worse and worse. The IP seems continual, and continually exacerbated by whatever I do, and is not very ameliorated by anything that I'm supposed to try, to calm it down.
One observation: during this 75mg. period, I did discover some hidden vit. D in some of the food that I was eating, and I eliminated this from my diet (a little bit of kelp in a calcium supplement, and sunflower oil in my favorite chips). I'm now wondering whether, by eliminating these, I reduced my vit. D levels to such an extent that these levels became too therapeutic too quickly, and enabled my immune system to turn on but not turn off...(I'm also very slender [not by choice], and I'm wondering whether my vit. D levels came down rather suddenly, since I don't have many fat stores in which to hold the vit. D anyway...) As you can see, I'm grasping at straws, trying to figure out why my symptoms have become so bad at this level. 
Based on your expert advice, what is the best course of action for me? (1) Stopping all Mino. altogether for a period of time, and allowing the IP to resolve over whatever period is necessary (4, 5, even 6 days), and then resuming the 75mg. doses? (2) Doing number 1, but then after this, repeating the 50mg. level till my IP resolves clearly and obviously in plenty of time before ramping up? (3) Taking 25mg.-50mg. doses of Mino. in between my usual 75mg. doses, or taking Mino. at 75mg. more frequently?
I'll be touching base with my doctor on Thursday, and I hope to get some vit. D tests ordered at this time.
Sorry for such a long report, but perhaps it will give you the clues you need to help me determine the next course of action. Thanks much.
Anne
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Posted: Wed Oct 24th, 2007 09:00 |
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It's unlikely the tiny reduction in intake of vitamin D has anything to do with your current intolerable symptoms.
If stopping mino worked for you before, you could try that.
Or:
If your most current dose of mino has been 75mg, reducing it to 50mg and taking it every six hours may reduce immunopathology. See When to take low-dose, high-frequency minocycline.
You report that activity exacerbates symptoms. Some folks are too sick to maintain tolerable symptoms and continue to work. I know you don't want to hear this, but you may fall into this category.
Let us know how it goes........
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