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DON
Member in Phase 3
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Posted: Mon Jul 19th, 2004 01:28 |
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Hi, my name is Don.
My illness profile is that of a: long term CFS patient, recent beginning of body pain last 6 months-hands and feet, debilitating fatigue (awake at 7am falling asleep by 10am without meds), stress fatigue, extreme tinnitus (very high frequency ringing of auditory system), IBS, headaches, memory loss, loss of balance, brain fog, loss of concentration, weight gain despite exercise and diet, bone spurs, skin rashes discoid in shape, mouth blistering, heat intolerant although experience cold/numb feet, photosensitive (sunburn much easier than pre-illness), fermented alcohol intolerant (causes immediate brain fog and sleepiness).I have been treated with very few medications, a few anti-virals such as acyclovir, and a couple of antibiotics such as doxycycline and cipro........no significant affect.
My physician started me on a modified version of the Marshall Protocol 3 weeks ago for CFS, using; Benicar, Cefzil (a second generation cephalosporon) as an antibiotic for potential yeast overgrowth, Naltrexone, and a few supplements thrown in for good measure- Licopene and Boswellia.
The doctor also mentioned adding Isoprinosine to other patients Marshall Protocol regimines, and may also offer this for me.
No specific testing was done for starting me on this protocol.
He did not mention anything about vitamine D and sunlight avoidance.
So far, Ive had no major positive break thrus, but have experienced some varied sensations; like the pulsing aroma of burning electrical insulation-the 2nd day on the meds, increased tinnitus, increased fatigue, increased brain fog, and increased sleep disturbance, even with the use of Klonopin. Ive not had any herxing flu-like reactions like many report, but then I dont seem to react to most medications. I have in the past been on high dose Cipro and Doxicycline with no flu-like herxing or noticeable positive affects.
For me, the most pronounced affect of the Benicar seems to be the increased levels of brain fog, whereby I almost become catatonic, and this is with a minimum dose of 40mg 1x day. I wouldnt want to drive a car in this state of mind.
I stopped taking the Benicar for a 24 hour period (yesterday and today) to see if the extreme brain fog lessens...........and it has. Having read some experiences of others on this protocol using 40mg Benicar dosages at 4 and 6 hour intervals, I dont know how they do it, it feels like those doses would put me in a coma.
I will re-start again this evenning with the Benicar at a 20mg 1x dose, move to a 40mg 1x dose, and increase the interval level at this dosage rate depending upon the severity of brain fog.
Wish I had greater physician access to discuss the reactions and progress of this protocol, but unfortunately my doctor is in high demand in my area for FM/CFS, works only 4 days a week in this office, and is difficult to get information from outside of the normally scheduled office visits due to time demands.
Hope I am on the right course and not doing anything radically wrong.
I will also provide a copy of this under the Benicar-no minocycline topic discussion and update it as I progress.
Thanks for providing this website, I am sure it will prove valuable in providing needed information and feedback........Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Jul 19th, 2004 01:47 |
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Don,
There is no such thing as a "modified Marshall Protocol". Experimentation is dangerous, no matter how well informed your Doctor may be.
It is particularly dangerous, in my opinion, to take Benicar and any other antibiotics, at any other doses, than those we have established are safe in our sarcoidosis cohort.
We have had patients' hearts stopping due to Jarisch-Herxheimer shock, and other patients having to get oxygen forced down into their lungs at the ER. I don't want to go back to those dark days again.
We take no responsibility whatsoever for anything that happens to anybody who modifies the protocol, especially since Doc has not discussed with me the problems which might result from such changes.
Please ask Doc to call me.
Sincerely
Trevor
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pennyhoule
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Posted: Mon Jul 19th, 2004 02:38 |
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Hi Don,
I'm very concerned about this big deviation from the protocol, which remember, was designed after much research and trial and error. Not following the protocol properly could result in some severely negative reactions.
It's especially important that you start out with the antibiotics exactly as outlined in Phase I of the protocol. Taking more than a very low dose of Minocycline could cause a severe herxheimer reaction (bacterial die-off). The Benicar potentiates the antibiotic, magnifying its effectiveness tremendously, and you could become very ill, dangerously ill. You must start at low dose of the antibiotics, working your dosage up gradually as your body lets you know that you can tolerate the herx, while increasing the Benicar to handle the effects of the bacterial die off. (The Benicar works in more than one way with it's inflammatory blockade, both helping the immune system kill bugs, and helping the body deal with the effects of the bugs dying). So it's very important that we are taking ENOUGH Benicar to create a good inflammatory blockade. 20-40mg per day will not create the blockade you need and you'll suffer.
I've been on months of i.v. antibiotics. Prior to the MP, I was taking 100mg minocycline 3 times a week. Now with the Benicar in my system, I can't even tolerate 25 mg a week without a major herx effect. I can't imagine what would happen if I started the minocycline at a full standard dose, or started a completely different antibiotic. I truly think it could give me a heart attack. You must be very careful with this and follow the protocol correctly.
Please discuss this with your doctor. It's really important that your Doctor call Trevor and discuss why the protocol is designed the way it is. He needs to understand that modifying the protocol could have seriously negative effects.
penny
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Margo
Member in Phase 3
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Posted: Mon Jul 19th, 2004 20:23 |
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Don,
Most people report fewer problems with dosing the Benicar at 40 mg every 8 hours (every 6 hours when they are having severe Herxes).
More frequent dosing gives a more constant level of Benicar in the blood. The effect of more frequent dosing isn't additive (ie, more brain fog). Please ask your doctor to discuss these issues with Trevor.
Margo
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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Posted: Mon Jul 19th, 2004 21:07 |
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Don:
One thing that I think is very important for you to understand is that your doctor has NOT put you on the Marshall Protocol. You are simply taking Benicar and some other drugs.
If your doctor thinks that he is putting people on the Marshall Protocol, then he does not understand the concepts behind it.
Please have him review the documents on this site and call Dr. Marshall. The sooner the better. It would seem that he could cause some potentially serious harm to you and his other patients by using Benicar this way.
Please be sure to tell him also of the private forum for medical professionals on this board. He can either discuss this with Dr. Marshall when he calls him or he can register on the board and request to be added to it.
Dr. Marshall can be reached at 805-492-3693 or by email at trevor.m@yarcrip.com .
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*We can help you understand chronic disease, but only your physician is licensed to give you medical care *
Always consult your physician before commencing or changing any treatment he/she has prescribed for you
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DON
Member in Phase 3
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Posted: Tue Jul 20th, 2004 02:04 |
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Dr. Trevor Marshall, Penny, Margo, and Suzanne; thank you for your feedback in response to my progress report posting.
Perhaps I have been premature in posting my experience without having a better knowledge of my doctors intent with his latest perscriptions for me.
He may know something about my illness profile, background, medical history, and medication consumption that has led him to prescribe the regimine that he has..........I wont be able to determine this until I speak with him about some of the concerns that you have all raised, which, unfortunately, may be some time from now, due to the nature of his practice, and the difficulty in communicating with him outside of pre-scheduled bi-monthly appointments.
I will definetly put the appropriate calls in and hope that I can have the proper discussion with this doctor. If not I will have to look to other alternatives.
Needless to say, I have stopped taking the involved medications until I get some clarrification.
Thanks again, for taking the time and effort to respond, I guess this is a good example of the benefits of this messageboard........Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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pennyhoule
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Posted: Tue Jul 20th, 2004 03:08 |
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Hi Don,
Do you have high blood pressure by any chance?
penny
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DON
Member in Phase 3
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Posted: Tue Jul 20th, 2004 04:15 |
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Hi Penny,
Funny that you should mention that, because normally it is not, even though I have had a weight gain and elevated cholesterol levels with the onset of the desease, but during the last doctors office visit it was noted that my bp was higher than previous visits, 150/90, and it was during this office visit that the Benicar was prescribed, leading to the possible conclusion that the doctor is using Benicar for blood pressure reduction and not in the classical sense of the Marshall Protocol. By-the-way, the term "modified Marshall Protocol" is mine and not my doctors, he should not be blamed for that sin.
Unfortunately, at the time of this doctors office visit I was not versed in the details of the Marshall Protocol and was unable to ask the appropriate questions for proper clarrification. But, during the office visit the doctor mentioned the Marshall Protocol, websites that I could further explore for details, and a rough cursory explanation of T1-T2 relationships and the role it plays in CFS and the Marshall Protocol. Of course, at the time much of this was going right over my head with the brain fog and all, so I did like I suppose many CFS patience do, I paid for the office visit, took possesion of the perscriptions, got them filled, and began taking the regimine as perscribed by the doctor, trusting that he knows what he is doing but with the intent of checking on things, as I go, to the best of my abilities, resources, and knowledge base (lack of detailed medical knowledge).
Well, it appears that I have not done a very good job and need to backtrack to find out more about the details and intent that my doctor was striving for. Short of being a mind reader and getting into the doctors head, I dont know how I could have developed a clearer picture considering the information that I had at the time.
I guess this is what they call an "ongoing process" that will sort itself out as I get clarrification.
Penny, good observation on the bp........Don
>Hi Don,
Do you have high blood pressure by any chance?
penny<
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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pennyhoule
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Posted: Tue Jul 20th, 2004 04:31 |
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Well, the good news is, he's obviously interested in the protocol and sees the rationale behind it as being sound, so he should also easily understand the rationale for the full blockade being necessary (benicar at minimum 40mg 3xday).
Let's give him an E+ for effort and an I+ for initiative. We really need doctors like this, willing to look at the new research and to put patients on promising new programs that might actually help them, instead of just recycling the same old, same old. With just a little more information under his belt, perhaps he'll be here on the board with us very soon, helping lots of people get well. Please tell him about the professional section where he can speak with Trevor, if he does not yet know about it.
penny
p.s. I just saw a study recently that's saying that bp of 140 used to be considered borderline high, but now they're saying it's just high. So perhaps the 150 bp reading really motivated him to put you on what he considers a beneficial protocol. Perhaps he was waiting to hear from you after reading at the mp sites, whether you'd be wanting to try the full protocol, since it's kind of new, and some people just do what their docs suggest. Perhaps he wants to know which patients are really keen to try it as designed? I just wonder this, because he was telling you to check out the websites. He sounds like a forward thinking doctor, who really is trying to help his patients.
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Posted: Tue Jul 20th, 2004 05:31 |
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Hi Don:
I would bet that he put you on the Benicar for high blood pressure and the abx for other issues he has identified, and that the discussion of the MP was a separate issue, given your high BP reading at that visit, and just a coincidence that he rx'ed the same med for the BP as in the MP. Or perhaps he figured he'd rx the Benicar for high BP and just up the dose if you decided to go on the MP.
Regardless, it would seem that there is hope for this doc!
____________________
*We can help you understand chronic disease, but only your physician is licensed to give you medical care *
Always consult your physician before commencing or changing any treatment he/she has prescribed for you
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Pippit
inactive member
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Posted: Tue Jul 20th, 2004 08:59 |
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Hi Don,
Did you print the Phase I Protocol instructions and give them to your doctor when you first asked him to prescribe it? If not, please print this out and give it to him to read through. It clearly says that we don't recommend taking any supplements or other antibiotics in addition to the Marshall Protocol meds. If he read the material and still had you taking these other things he is ad libbing. I realize that even many doctors view supplements as harmless, but whatever his rationale (which you aren't expected to figure out), he needs to realize that Dr. Marshall has really carefully researched the biochemistry of this and knows all the ins and outs of it. We ask that your doctor please trust him on this because he spends all day and some nights studying every nuance of the implications of how all these compounds interact and has become quite an expert.
I really hope your doctor will use the doctor's forum to speak with Dr. Marshall about this in more detail if he is unsure of what is outlined. I realize this is new to him, but if he is hard to get in touch with between appointments the forum may be the best and most convenient way for him to discuss this situation for further clarification. He can post on his own timetable, at night, between patients, on the weekend, before work in the morning, but to do justice to you I hope he will devote a little bit of time to resolving this discrepancy so you can get back on track as quickly as possible. It would only take a few minutes.
If you are unsuccessful at contacting him or having him contact Dr. Marshall, and you still don't have the correct meds in the correct dosages, please let us know sometime tomorrow and we'll do what we can to help.
I can remember how awful I felt before I started the protocol so I know you must be suffering, 
Pippit
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Diagnosis: Neurosarcoidosis
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DON
Member in Phase 3
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Posted: Tue Jul 20th, 2004 09:00 |
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Hi again Suzanne, that is a very distinct possibility.....Don
>Or perhaps he figured he'd rx the Benicar for high BP and just up the dose if you decided to go on the MP.
Regardless, it would seem that there is hope for this doc!<
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Tue Jul 20th, 2004 23:46 |
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Hi Pippit,
Thanks for the advice and offer.
Actually, I am doing quite well compared to many other CFS patients that I have read about, aside from the short period of extreme brain fogging experienced over the weekend, and that has now subsided.
I am sure that I will get everything worked out over the following days and weeks.
Again, thanks,......Don
>If you are unsuccessful at contacting him or having him contact Dr. Marshall, and you still don't have the correct meds in the correct dosages, please let us know sometime tomorrow and we'll do what we can to help.
I can remember how awful I felt before I started the protocol so I know you must be suffering,
Pippit <
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Fri Jul 30th, 2004 01:27 |
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Is there a preferred time to take the minocycline dose, or does it matter?
Ive read all the various MP dosing/concentration curve information and no where have I seen when it is recommended to take (time frame) the minocycline dose relative to the Benicar injestion............., morning, noon, or night, with Benicar or without, with food or without?.......Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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pennyhoule
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Posted: Fri Jul 30th, 2004 01:36 |
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No set time. It kind of depends on how you react, when you herx, etc., and you may want to time it so that you can sleep through the majority of it? :-)
Most people herx hardest the day after they take the mino, but mileage may vary, as Trevor says.
The only real caution is that you should take it at least 30 minutes before bed time, so that the capsule has a chance to dissolve in your stomach. Mino can be a bit hard on the esophagus.
penny
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DON
Member in Phase 3
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Posted: Fri Jul 30th, 2004 02:43 |
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Finally got my doctor/patient issues resolved and have started the MP protocol with no sunlight, no other meds., and no supplements.
My illness profile is that of a: long term CFS patient, recent beginning of body pain last 6 months-hands and feet, debilitating fatigue (awake at 7am falling asleep by 10am without meds), stress fatigue, extreme tinnitus (very high frequency ringing of auditory system), IBS, headaches, memory loss, loss of balance, brain fog, loss of concentration, weight gain despite exercise and diet, bone spurs, skin rashes discoid in shape, mouth blistering, heat intolerant although experience cold/numb feet, photosensitive (sunburn much easier than pre-illness), fermented alcohol intolerant (causes immediate brain fog and sleepiness).I have been treated with very few medications, a few anti-virals such as acyclovir, and a couple of antibiotics such as doxycycline and cipro........no significant affect.
Started the Benicar 40mg x4 dosage 7/21/04, bp averaging 125/75, 68 hbs.
Continued at this rate for 9 days with noted intermittent increase in brain fog at times, day 7= 24 hour period of mild flu like chills and achiness, slight fatigue increase, slight shallowness in breath when exerting, and increased sweats.
The most encouraging sign, and might be of special interest to CFS patients, is a distinct warming of the feet and hands...........areas commonly a problem for these patients.
Took the first 25 mg dose of minocycline two hours ago today, 7/29/04, dont feel anything yet.
Keep you posted........Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Sat Jul 31st, 2004 22:24 |
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| day 12 overall, 3rd day on benicar and minocycline, absolutely no reaction to abx so far, 125/79x 69 bp/rate......Don
____________________
CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Admin
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Posted: Wed Aug 4th, 2004 06:33 |
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Don:
Thank you for posting your progress. Please keep us updated as you are able.
Even if we don't always comment, we are reading and taking note of how people are doing. It helps Dr. Marshall and his staff gather data to determine the success of the MP with these other illnesses as well as sarcoidosis.
____________________
*We can help you understand chronic disease, but only your physician is licensed to give you medical care *
Always consult your physician before commencing or changing any treatment he/she has prescribed for you
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DON
Member in Phase 3
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Posted: Wed Aug 4th, 2004 06:50 |
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HI Suzanne, always good to hear your friendly voice.
Day 15 on Benicar 3x 40mg, day 6 on Mino 25mg, will boost to 50mg tommorrow for every other day dose.
Feel very good, no herxing on Mino, good sleep, most pronounced symptom is very loud, persistent tinnitus.......Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Fri Aug 6th, 2004 00:56 |
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Day 17 on Benicar 3x 40mg, day 8 on Mino 50mg every other day. 125/74 bp-68 hr.
Still feel very good, no major herxing on Mino, good sleep, most pronounced symptom is very loud persistent tinnitus, slight headache this morning, and slight warming sensation with right forearm area, no brain fog.......Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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