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Ames
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Posted: Sat May 14th, 2005 18:00 |
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from Started benicar. First, to help you gauge my responses to minocycline I would like to give a recap of how my symptoms/reactions have been altered since I eliminated light and vitamin D (for a month and a half), and finally added Benicar two weeks ago.
I am not a typical case, because I started reducing my 1,25 D gradually by eliminating light/D without Benicar for about a month and a half. This meant I was wearing Noirs and not eating D fortified foods but not yet on Benicar.
The first change I really noticed was a few days after I cut out all food sources of D. I became photosenstive from that point on, could no longer watch the TV on full brightness, and often was too bothered by the light it produced to watch it at all.
It should also be mentioned that during this time I was also taking 200mg of oral ketaconazole a day, which has been shown to lower 1,25 D.
During light/D avoidance period, I began to notice the following changes:
1. My muscle pain, especially soreness when I woke in the morning started to decrease.
2. My cravings for sugar and carbohydrates were greatly reduced. At night I used to get intense sugar cravings, they are literally gone
3. I stopped feeling like I was starving all the time. In fact, I may even have developed less of an appetite. Often I don't feel hungry enough for lunch until around 4 p.m.
4. My sleep medicines seemed to become incredibly more powerful. Now I take them and literally fall into bed.
5. My dreams dramatically increased. Each morning I would spend a long period of time where I was almost aware I was dreaming, and the dreams were vivid. This continues now.
6. I had random bursts of energy, where I actually felt like walking somewhere
7. One night I removed my glasses for about 5 hours. The next day I woke up with unberable lung pain and sore throat. I laid shivering under a blanket for two days in the complete darkness before I started to feel better,
THEN I STARTED BENICAR
1. My runny nose and problems swallowing improved.
2. I felt significantly better, to the point where I was constantly trying to find something to do inside instead of resting.
3. I went out to dinner in normal lighting with my glasses on. Regardless, I woke up the next morning with the same terrible sore throat and lung pain.
4. Since I started avoiding light/D I have lost 10 pounds.
5. Sometimes I went through periods of feeling very bad, followed by a period later in the day where all symptoms went away and I felt very good ( a herx?
(OK, now...remember I am doing on a therapeutic probe)
I began minocycline April 13. I took 25 mg at 9:15 a.m.
I noticed no changes in how I felt for the first 8 hrs. Around 5 I had a small period where I felt shaky, disoriented, and had a rapid heart beat and rapid breathing. It didn't last long.
At night around 9, I tried to watch a movie and was bothered by the light so I turned it off. I felt overly emotional, sort of strange mentally.
I took my sleep meds, and could barely make it to my bed before passing out.
This morning no significant symptoms. Perhaps a slight sore throat, and occasional pain on the two lobes on the lower part of my head. My glands might feel slightly swollen in my neck. Other than that, I really don't feel very bad at all.
I'm not sure if I have herxed or not. If I hadn't taken mino I wouldn't have considered the way I've felt in the last two days to be at all unusual. Symptoms like the ones I have today also happen on days i don't take mino.
I am wondering if tomorrow I should increase my dose to 50 mg to see if I have more of a reaction.
I was expecting to feel a lot worse at this point. Since I am doing a probe, my lack of nerx symptoms is making me uncomfortable. Any suggestions?
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Sat May 14th, 2005 18:37 |
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A few other things..
I don't think too much light is an issue. In the last 3 weeks I have left my house literally twice. Inside I only have one incadescent bulb on at any time on the lower dimmer volume possible. Or I spend periods in the complete dark listening to books on tape or cds. Barely any TV. It is not possible that a ray of light has touched my skin in the last month I have protected myself so well.
Also I forgot to mention that in the last few weeks I have stopped taking a bath at night because it was directly correlated to waking up with a mild sore throat in the morning.
Also, I have lost ten pounds but I do eat-a lot. Even when I'm not that hungry I force myself to eat at least three fairly large meals a day.
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Aussie Barb
Member in Phase 3
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Posted: Sat May 14th, 2005 18:38 |
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Amy
re when to increase: please read The First & Constant Guide to Marshall Protocol PHASE ONE MARSHALL PROTOCOL How to start the Marshall Protocol <<
some print it out and check it daily or regularly to make sure they are remembering what it says..
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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Ames
Board Staff
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Posted: Sat May 14th, 2005 18:48 |
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Right, I've read the guidlines and I know when we are supposed to increase.
The thing for me, is I don't really feel any worse after the 25 g of mino.
Since I am doing a probe, I was wondering if I should increase the dose, to at least see if I am able to herx, and consequently if the protocol will work for me.
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Aussie Barb
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Posted: Sat May 14th, 2005 18:59 |
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Amy
the FAQ What is a therapeutic probe?
says "When using the Marshall Protocol as a therapeutic probe, follow the phase one guideline exactly, including avoiding all sources of Vitamin D. Because your symptoms and diagnoses suggest that you have Th1 inflammation despite lack of evidence from the D-metabolites tests, you should proceed carefully and follow all the precautions listed in phase one doc.."
This is for you to be safe and comfortable....
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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Ames
Board Staff
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Posted: Sun May 15th, 2005 00:15 |
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Thanks. I understand that I should wait another week to up the dose, so I guess I will.
I know these guidelines are created to keep me feeling safe and comfortable, which I appreciate! However, I am trying to balance them with the fact that I think I may be going slightly insane wondering the the MP has the possibility of working for me.
The MP seems like a great hope for me, but the fact that my D tests did not have the correct ratio, and now the fact that I don't feel anything I can pinpoint as a definite herx have me worried.
I suppose now at about 8 p.m. my glands do feel a little more swollen than usual. However, I wonder if this is really the case, or if I'm just thinking about how I feel so much that I am focusing more on the pain.
In the months before I started avoiding D and light, I did weekly IV's of hydrogen peroxide. About 12 hours after the IV's I would literally feel myself start to feel incredibly worse. There was no question that I was getting a herx reaction, I felt so incredibly bad. They lasted for about 2 days. Dr. Marshall told me it was very possible these IV's were able to kill CWD bacteria. Consequently, I was expecting more of a dramatic herx like I got from the IVs. I realize this may happen at a higher dose. But for now, 25 mg doesn't seem to be making much of an impact.
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Sun May 15th, 2005 12:55 |
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This morning I woke up with a mild sore throat and lung pain. Very similar to the symptoms I have experienced when I have been exposed to too much light. However, symptoms are much less pronounced than those I get from light exposure. However, this could be a mild herx, which leads me to believe that my herxes may occur nearly 48 hrs later, rather than 24.
I am taking another dose of mino this morning and will see if I react any more the second time around.
Also, I have been feeling extremly scatterbrained lately. I forget to do things, or can't remember what I set out to do! In any case, this morning I couldn't find my Benicar when the alarm went off. So by the time I found it, it was probably 8 hrs 15 min from my last dose.
I know in the guidelines it says that if Benicar is not taken every 8 hrs, an angiotensin blockade is broken which may take several days to re-establish. Do you think I broke my blockade? If so, or if I forget a dose in the future, can this affect my ability to herx?
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Frans
Member in Phase 2
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Posted: Sun May 15th, 2005 15:59 |
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Amy,
Good to see you have started the Mino.
About the herx or not herx:
If you take more doses of the 25 MG, you will be better able to tell if you are indeed herxing or not.
Phase 1 is, among other things, to teach you what is herx and what is not.
Remember also that the MP is designed in a specific way.
Think of the MP like peeling an onion.
Benicar will (sometimes) take care of the outer skin.
Every different level of dose of Mino (and the other abx's in phases 2 and 3) takes care of another deeper layer.
You cannot begin with the second layer before you have taken care of the first.
The MP is designed to peel that onion (the TH1-disease) layer by layer, because if you would swallow the entire onion at once, you would end up in the ER 
Hope this helps.
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Ames
Board Staff
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Posted: Sun May 15th, 2005 16:46 |
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Ha ha, thanks Franz...that's a good way of helping me understand the MP.
I agree that I need to keep taking the 25 g for a while and see if I can learn to pinpoint a more specific herx, and get a better idea of when they will be most likely to occur. Then I will be more able to understand my reactions.
Right now I'm having trouble deciding if certain symptoms are just a result of my illness, or if they are due to a herx. I hope my herx can become a little stronger so that it may become more clear.
I know that this protocol requires much time and patience, and I have no intention of rushing through the phases or trying to increase doses before I am certain it is a good idea. However, my only concerns now at the beginning of the protocol is trying to see if I am actually able to herx or not, so I can know if the protocol will work to help me regain my health. Once I've herxed for sure, I will be a lot more laid back about whether what I'm doing is right or wrong, and I will just settle back and follow the protocol exactly as specified (which I'm doing now anyway!)
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Aussie Barb
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Posted: Sun May 15th, 2005 20:34 |
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Amy
re your herxing at 48H
this FAQ Why do we take minocycline only every other day? Why do I feel worse on the second day?
says: "48hrs is not an absolute cutoff for determining a Herxheiemer reaction. At the end of 48hrs the level of minocycline may be low enough to be especially effective. Also, the immune system sometimes seems to continue functioning better even without minocycline 'on board'. Therefore, intense fatigue can be a Herxheimer reaction."
you can wait till 72H before taking the next dose of mino if you are herxing/ herxing tolerably at 48H.. to get more herx from that dose if you wish..
re Benicar see FAQs How does Benicar work? Why is it superior to other ARBs?
Should I take it every six or eight hours?
What times should I take my Benicar? What if I forget a dose?
If you are prepared ahead of time.. with your alarm, your pills and some water all in place, you may find it easier to be on time..
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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Ames
Board Staff
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Posted: Mon May 16th, 2005 12:58 |
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Thanks Barb!
As for the Benicar in the morning, I have been setting it right on my nightstand with a glass of water, but the other morning it fell behind my nightstand, consequently taking me a while to find it. Hopefully won't happen again. I am also setting two alarms from now on to ensure that I wake up.
Today at 24 hrs. from my 2nd dose, I still have no real herx. Possible reasons for not herxing could in my opinion possibly be:
1. I have broken the Benicar blockade by oversleeping slightly twice in the last week.
2. The immunosupressive effect of the minocycline is not allowing my immune system to kick in and kill the weakends CWD.
Is the above possible? Do you think possibly my immune system needs time to learn to kick in with more potency? How could I maximize it's ability to do so?
3. I have taken the mino in the morning, and 3 hrs away from my dose of Benicar.
I know that the mino can't affect the bacteria if the tissues around the macrophage are inflamed. So perhaps it would be better from now on to take the mino with the Benicar. Also, does taking the mino at night offer an advantage? Perhaps if we are at rest, the immune system is able to kick in more effectively?
In any case, I am going to try taking my dose tomorrow at night rather than in the morning, and along with Benicar.
The unusual thing with me, is I almost get the feeling that taking the mino is actually preventing me from herxing. I am one of those people who felt they occasionally herxed on Benicar alone. I absolutely had periods where I would feel terrible (shortness of breath, heart pounding, terrible lung pain, sore throat) which would last about four hours and then I would feel considerably better.
Now that I have started mino, I have had no reactions like that, which is ironic.
If I do feel a little worse again tomorrow at 48 hrs. I may consider the idea of dosing every three days. Thanks for alerting me of that possibility.
One last thing! Vegetables are listed under foods we can eat. I eat A LOT of veggies. Particulary a huge bowl of broccoli with lunch, and spinach or green beans with dinner. Yesterday another member told me he doesn't eat these veggies because they contain folic acid. Is he right that I should avoid them? That would mean drastically changing my diet.....
Thanks for your help!
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Aussie Barb
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Posted: Mon May 16th, 2005 17:22 |
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Amy
There is no advantage in taking your Benicar exactly with your mino.. establishing your Benicar blockade is important ie taking Benicar Q6H preferably..
This FAQ may help you assess all angles Why isn't the Marshall Protocol working? what am I doing wrong?
re Folic Acid: it is extra supplementation we advise against.. Most people get enough folic acid by eating a normal diet. see FAQ Why should I avoid folic acid supplementation?
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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Ames
Board Staff
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Posted: Mon May 16th, 2005 17:59 |
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Thanks Barb, I went over that FAQ again and accessed each number. I have really followed every aspect of the protocol almost to the extreme in terms of avoiding light and D in the diet. The only possible problem could be the two instances when I let a little over 8 hours go between Benicar doses.
Also, one more thing. I often take a bath in the afternoon. I have done so for the last three days ( and the time before that as well). I know that taking a bath can increase body temperature and possibly make the antibiotic perfuse the tissues better. However, in reading more posts I have read that it also increases the potency of the antibiotic. Do you think that by taking a bath I could have increased the potency of the mino so that the concentration was too high and shut down my immune system?
I'm not taking any more baths, so I will see if that makes any difference.
I'm still switching to taking mino at night tomorrow, so I will have a longer period during the day where I haven't taken another dose. It will give me a chance to see if possibly the third day might be when I feel most herx symptoms, in which case I would again consider dosing every 3 days.
Thanks for clearing up the folic acid question. Glad to know I can still eat my greens!
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Aussie Barb
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Posted: Mon May 16th, 2005 18:04 |
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" Do you think that by taking a bath I could have increased the potency of the mino so that the concentration was too high and shut down my immune system?"
no..
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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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Ames
Board Staff
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Posted: Tue May 17th, 2005 00:15 |
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It is around 8, and I am very glad to say that I do not feel well. In fact, I think this is a herx. Starting around 5 I started to get a pretty bad headache, accompanied by the feeling like someone is squeezing my head, and the bones in my head hurt. And a slight sore throat. Plus, a general feeling of much less energy than before.
What makes me think this is a herx and not something else is I haven't had symptoms like these for a long time. Interesting these would be the first to show up.
I hope I am right about this. If I end up being correct, feel free to condense my above posts into a thread titled something like "endless questions about any imaginable reason why I might not be herxing" Obviously just kidding...
Thanks for your patience.
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Frans
Member in Phase 2
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Posted: Tue May 17th, 2005 00:42 |
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Amy !
Congratulations with your first official herx on Mino !!!
May there be many more on your road to health !!!
Hope you feel terrible... ;-)))))
Best, Frans
Last edited on Tue May 17th, 2005 00:43 by Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Ames
Board Staff
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Posted: Tue May 17th, 2005 12:23 |
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Thanks Franz! I hope I feel terrible too!
My sleep wasn't very good. I fell asleep thanks to my meds, but I woke up at six with vivid dreams and still the same headache as the day before. I felt almost feverish. I think herxing brings back some of my craving for sweets, because I was definately dreaming about an ice cream cone.
Right now I'm trying to decide if I should wait another day to take my next dose. I still have the head pain/throat/soreness in skull, but not as bad as yesterday. However it is still there.
I was going to switch to dose at night, but decided against it, because my herx seems to hit on the afternoon of the second day if I take it in the morning, and I like herxing the most at that time rather than right before I have to go to sleep.
I think I am going to take my next dose, but if I continue to notice that I still have symptoms at 48hrs. I will perhaps dose every three days.
____________________
CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Tue May 17th, 2005 17:07 |
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Just a few questions:
1. I think I remember reading somewhere that increasing body temp by 2 degrees doubles the strength of the mino. I mentioned before that I like to take baths. If I take a bath a few hours after taking a 25g dose of mino and it raises my body temp by 2 degrees would I react similar to as if I had taken 50 mg? Would you recommend I stop baths so that I don't increase the potency of my current dose. Also, I drink a hot glass of green tea every morning. Is it possible this could raise my body temp too much?
2. Due to the concept behind pulsing antibiotics, if I still feel symptoms of a herx at 48 hrs and then take another does of mino should I expect those symptoms to go away because of the immunosuppressive effects of the new dose?
3. I know you showed me folic acid supplementation should be avoided. However, I feel I eat greater amounts of foods high in folic acid than most people (large amounts of greens, at least an avocado every day, beans often) should I try to switch my diet to include less of these foods?
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Tue May 17th, 2005 18:22 |
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I came across some bloodwork from February, a month before I started avoiding light and D.
Bun/creatinine ratio: 16
Urea/nitrogen: 14
Neutrophils absolute: 1420 cells/MCL
Lymphocytes absolute:2350 cells/MCL
Monocytes absolute: 310 cells/MCL
WBCs: 4.2
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Tue May 17th, 2005 21:26 |
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I'm not sure if this is supposed to be what's happening, but ever since I started feeling bad yesterday, I haven't started feeling any better. In fact my throat and lungs are beginning to hurt more, and my head pain is still there.
Shouldn't I have felt better today, or is it possible that some people feel continually bad and I am somehow still herxing?
I really do feel much worse than before...
____________________
CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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