 |
| Author | Post |
|---|
gondwana
Member
|
Posted: Mon Jul 27th, 2009 05:10 |
|
. . . before starting phase 2?
isnt the main thing that your ip be tolerable at Mino being 100?
____________________
Sarc. w/paresthesia, musc stiffness/weakness, tinnitus, sudden BP spikes, migraines, sinus probs, sleep probs, big toe pain, spontaneous "sprains" in feet w/out injury, sudden nausea, dry eyes, heat intol, nocturia, pituitary damage
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 601 |
| Status: |
Offline
|
|
Posted: Mon Jul 27th, 2009 23:55 |
|
Well, it's like this.
Your progress in Phase 1 before the 25-D levels are below 12ng/mL is like you are in a canoe on the river above the Niagara Falls. The only problem is that you happen to be deaf and without a map.
Fortunately, there are people on the shoreline who are familiar with the lay of the land and they are willing to signal to you about the impending danger before the current sweeps you over the top and onto the rocks below.
However the longer you let the boat drift downstream, the harder it will be to resist the ever increasing current's pull.
So, like many others before you, there is an illusion of control and it is almost impossible to pay attention to the people standing on the shoreline waving madly to try and save you. It's up to you and your doctor to navigate the waters of your recovery.
You and your doctor together ignore Niagara Falls at your own peril. You see, our whole body is impacted by this slow-growing, stealth infection. Your joints, your heart, even your brain.
I can say from personal experience, at the very point in time when you will need to think the clearest, that point when the immune system awakens (as the 25-D levels drop), when the IP/herx levels go intolerable, is the very time when you most likely won't have mental clarity to navigate your way to shore. It is too late and recovery is now going to take a lot of effort.
And you may not be able to read the posts that come from someone going through this on the curemyth1.org forums, but believe me, their cries for help are all the more frustrating because they were warned. They just couldn't believe it could happen to them.
I hope this helps illustrate the reason why the protocol guidelines are written the way they are. We like to see everyone healing from their disease, not compounding their pain and suffering. 
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
gondwana
Member
|
Posted: Tue Jul 28th, 2009 00:43 |
|
Understood . . .
I'm on Phase 1 with 100 Mino. Started Phase 1 in March.
My confusion stems from the following instructions which are posted on the site.
At this page:
http://autoimmunityresearch.org/phase1.pdf
The following instruction appears:
When the Olmesartan blockade and 100mg of Minocycline every other day no longer produce significant Immunopathology, the patient is ready to proceed to Phase Two. Some patients will be ready for Phase Two in a few months, some will take a few years.
OK. When I read this, I thought, "Well this page is *the* bible for instructions on how to proceed, and it clearly says that the trigger for moving on to the next Phase is the degree to which my IP is tolerable on 100 mg, not what my Vit D25 levels are.
And this made sense, because the Benicar is holding my elevated Vit D25 levels at bay by activating the VDR . . . at least to the degree where the antibiotics can now work to kill bacteria.
But then I read the other posts where a big emphasis is made on whether the levels of D25 went down to 12 before starting Phase 2, and now I'm confused!
So which is it? Do I go by the fact (espoused by the most important document in the site library, the official pdf "Guidance for Physicians") that I no longer have (what to me is) "significant Immunopathology"? Or do I go by my D25 levels which went down, then up over the past 4 months, but are not anywhere near 12 (see below). How significant is it that the Phase 1 instructions are totally silent on the "below 12" criteria as a trigger for progressing to the Phase 2 level?.
It seems logical that the sooner I go to the "big guns" antibiotics, the sooner I start killing more bacteria, and the more i will suppress the Vit D production?
Here's my Vitamin D25 level history: Started at 24, went down to 17, then 2 months later went back up to 24, despite no change in my adherence to the Protocol. I'm not getting too upset about this, because i've read elsewhere that Vit D25 levels can fluctuate and take a long time to definitively go down, and I'm ready to be patient.
But I am confused by what seem to be contradictory instructions. Since the Phase 1 instructions are regularly updated and maintianed (I thought I read somewhere that this is the case), then it seems logical that if the D25 level at 12 were a critical trigger criteria, surely that important document would have been edited to include that?
Looking forward to everyone weighing in in this.
DaveLast edited on Tue Jul 28th, 2009 00:51 by gondwana
____________________
Sarc. w/paresthesia, musc stiffness/weakness, tinnitus, sudden BP spikes, migraines, sinus probs, sleep probs, big toe pain, spontaneous "sprains" in feet w/out injury, sudden nausea, dry eyes, heat intol, nocturia, pituitary damage
|
gondwana
Member
|
Posted: Tue Jul 28th, 2009 00:50 |
|
I want to add that I am very keen to indeed listen to those, like you, who warn from the shore. Far from being unwilling to listen, on the contrary, I thought I was following the letter of the "bible"!
LOL
OK. Looking forward to hearing the reconciliation of these disparate instructions.
Last edited on Tue Jul 28th, 2009 03:06 by gondwana
____________________
Sarc. w/paresthesia, musc stiffness/weakness, tinnitus, sudden BP spikes, migraines, sinus probs, sleep probs, big toe pain, spontaneous "sprains" in feet w/out injury, sudden nausea, dry eyes, heat intol, nocturia, pituitary damage
|
alycia2
Member
|
Posted: Tue Jul 28th, 2009 01:50 |
|
hi gondwana,
i too have wondered about this and have fear about it and haven't had anyone really explain it to me..i have asked my doctor...who has seen my d results, which are still quite high and also unstable..up and down, but has still had me move on with the mp...now in phase two...level 2 for the past 5 cycles...had all kind of things come up...from heart issues, bad kidney scores, depression and anxiety...i too have read both ways...have seen post where people say that dr. marshall says we shouldn't start phase two until levels are 12 but then not reading that in the instructions and my doctor, who is an experienced mp doctor not requiring that either...so, yes, it is confusing...and i do fear that the bottom will drop out and i will free fall into the abyss..so to speak..or at least for sure feel like it...
it's not like i am trying to grand slam this thing..i am willing to follow directions...but it helps if everyone gets on the same page...i hope you get some good answers to your post. i will be watching for them.
good luck.
alycia
alycia
____________________
tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
|
Dr Trevor Marshall
Foundation Staff
|
Posted: Tue Jul 28th, 2009 03:06 |
|
Firstly, Alycia, please do not assume that physicians fully understand the MP just because they are helping a lot of MP patients. We value the contribution of all of our collaborating physicians, but it would be unwise to assume that all of them understand, or are guided by, the intricacies of the science underlying the MP. We will eventually have a physician training and certification plan in place, but at this point a lot of the responsibility for keeping up-to-date still falls on the shoulders of the patients.
At concentrations around 20-25 ng/ml, the 25-D in your bloodstream starts to interfere with the operation of the VDR in your phagocytic cells (key to your innate immune system). It is possible for Benicar to compensate this to a degree, but I generally suggest waiting to start Phase 2 until your 25-D falls below 12 ng/ml.
However, there are exceptions, as the blood 25-D level is to some extent driven by your body's recovering metabolism. Members who have been waiting a long time for their 25-D to drop, and some have to wait several years, generally fall into the category of "recovering metabolism."
If you look at our new protocol guidelines:
http://autoimmunityresearch.org/phase1.pdf
you will see that activating your immune system with Benicar is the most important factor in recovery. Antibiotics are only a help, not the key to recovery, as was previously thought. See my presentation in Prague for more info :
http://vimeo.com/4293599
|
gondwana
Member
|
Posted: Tue Jul 28th, 2009 03:32 |
|
Dr. Marshall,
Thanks for clarifying. May I ask:
You say that people waiting a long time with little reduction in their D25, can be considered an exception to the "below 12" rule. In your view, how long is "long enough" to wait with intransigent D25, before it is OK to proceed with Phase 2? Hopefully my D25 will go down eventually, but if it doesn't, it'd be much appreciated to know just how long to hold out before it's OK to move on without progress.
Thanks again,
David
____________________
Sarc. w/paresthesia, musc stiffness/weakness, tinnitus, sudden BP spikes, migraines, sinus probs, sleep probs, big toe pain, spontaneous "sprains" in feet w/out injury, sudden nausea, dry eyes, heat intol, nocturia, pituitary damage
|
Dr Trevor Marshall
Foundation Staff
|
Posted: Tue Jul 28th, 2009 04:44 |
|
There is too little information in these posts about the level of immunopathology you are experiencing for me to make any educated guess. What dosage of Benicar has Doc got you on?
Also, was the same lab company used for all three 25-D readings?
|
alycia2
Member
|
Posted: Tue Jul 28th, 2009 04:46 |
|
hi dr. marshall,
i watched the video and read the new guidlines,which i have already read several times...the video makes sense to me...i can see that and was even told by my doctor that he thought the benicar alone was activating my immune system and i that my body was working really hard to rid itself of bacteria...
but, still, i was advised to carry on with the anbx...my last blood work was the end of may. i will callmy doctor tomorrow and ask for new tests to be ran..he likes to check them every two months..so it is time.
if i find that my d levels are still high...do i go back to benicar only...or benicar and mino and at what level for the mino?
i want to do this right! i do not want to end up in the er with a heart attack and i also do not want to end up at the er with raging kidney issues...
thank you for your instight.
akycia
____________________
tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
|
gondwana
Member
|
Posted: Tue Jul 28th, 2009 13:38 |
|
Hi Dr. Marshall,
All three 25-D readings were taken by the same company: Quest Diagnostics. They were taken, if memory serves: February (25-D of 24), April (25-D of 19), and July (25-D of 24). Truthfully, I was devastated by that last number, because I felt I had been making reasonable progress. Since getting the most recent reading, I have redoubled my compliance efforts, but I am still trying to get a handle on how things went wrong. My theories:
1.) Nutritional: I have been extremely rigid and compliant in eliminating souces of Vit. D (one exception, occasional slices of a cheese with Vit. A rating of 2%, which the instructions say, *should* be OK, no? Once every 2 days to have a couple of slices of this?). The most recent bloodwork actually says that: 25-OHD2 was < 4, which according to the lab was indicative of negligible supplementation, so I think my D-intake is under control. My carbohydrate intake was also restricted, though far less extremely so. For instance, once a week, I treat myself to a "Health Mex" chicken burrito with brown rice and black beans, no cheese, and none of the Vit-D ingredients. Also, for dessert, I'd occasionally have a diabetic sugar-free (maltitol and Splenda) chocolate/peanut butter cup, perhaps once every couple of days. My reasoning: Carbs don't affect Vit-D levels, and are forbidden due to their inflammatory properties . . . and since my IP is fairly under control (see below), my carb consumption must be OK (e.g. under the IP radar as it were). Am I wrong? Are my carbs causing my 25-D spike?
2.) The new guidelines say that Mp'ers who, for work reasons, cannot avoid being out and about during the day, can continue to do so. I have restricted my outdoor activity, but when I'd go out, I covered up. I'm assuming that there must have been a spike in my outdoor activities (I didn't notice one, but I also didn't keep a log of actual hours outside). I did take the precaution, on days when I knew I'd have to travel, or up my exposure for unavoidable reasons, to increase my Benicar to every 4 hours.
In any event, unless you tell me the carbs caused my D-25 spike, I doubt my diet is the source of my increased levels, so by elimination it must be exposure. I have changed from black curtains to aluminium foil (keeps the house cooler and thus does a better job of keeping out infra-red), I am wearing heavier clothing and a hoodie instead of a hat, even in the heat. To be honest, I have no light intolerance at this point, but I am wearing the NOIRs as required.
My IP is definitely there, but I can live with it. I do increase the Benicar to address spikes in it, but overall, if I can live or work around the IP, I try to keep to my every 6 hours dose:
Ringing in the ears comes and goes. never really seems to go away. But hardly what I'd call a "life impairment" or "intolerable."
Tennis elbow and other soft tissue discomfort that wont really go away even with the attempted increases in Benicar to address it. I'm rather used to it, and am working around it (e.g. using my right arm more), so I don't consider it intolerable, just annoying. Some instances (sore knee), did go away with higher Benicar, but the tennis elbow thing may just be a non-MP-related thing?
I had fleeting right kidney discomfort. Three weeks ago, my right kidney ached, so I upped the benicar as indicated, and the discomfort vanished within an hour. Kinda neat, actually.
I have neurological symptoms (occasional anxiety that passes within a few hours, brain fog is definitely there, and irritability), but these really come and go, so they are definitely not a persistent stressor.
My fatigue, which was such a marked symptom when I first started, is bugging me less. Probably getting used to it, and to the lowered blood pressure, which is actually an improvement over my pre-MP situation! (See below . . .)
More interesting are the improvements in my Pre-MP symptoms: My paresthesia is markedly improved. Still there, but I can now sleep soundly for the first time in nearly a decade. Occasional applications of a dab of numbing cream take care of a fleeting flare-up, so I am extremely happy about that. It truly was making me nuts.
The skin erruptions that had gone along with the paresthesia are totally gone.
My sudden, severe spikes in blood pressure (e.g. from 120/75 to 160/110) along with severe headaches are also gone.
My disturbed sleep patterns are also much improved, as is my nocturia.
So anyhow, that's where I stand. I'm game to go on to the Phase 2, but I am also prepared to hang tight and continue on Phase 1. But it sure would be great to have an idea how long you'd recommend staying on Phase 1 without improvment in the D-25.
Kind regards,
David
Last edited on Tue Jul 28th, 2009 13:47 by gondwana
____________________
Sarc. w/paresthesia, musc stiffness/weakness, tinnitus, sudden BP spikes, migraines, sinus probs, sleep probs, big toe pain, spontaneous "sprains" in feet w/out injury, sudden nausea, dry eyes, heat intol, nocturia, pituitary damage
|
gondwana
Member
|
Posted: Tue Jul 28th, 2009 14:03 |
|
Oh by the way, I notice that I goofed on my earlier posts . . . I said my D-25 had dipped to 17 . . I should have said 19 (which is correct). Freudian wishfull thinking or brain-fog. Sorry.
Before I forget, I was curous to ask, Dr. Marshall: The Phase 1 guideline is a carefully crafted document, and I notice that the 12 ng/ml reference is mentioned as "desireable" for Step Two of Phase 1, but not mentioned at all in reference as a condition to progressing to PHASE 2. Because this document is the result of very careful craftsmanship and regular updating, I must assume that this ommission is intentional. That being the case, what was you guys' reasoning for omitting reference to the "12 ng/ml rule" as a criteria for progressing to Phase 2?
I'm guessing it was to reduce information overload to the patient who reads this critically important document, but as a patient, I'd sure vote to have the info added if you feel that was possible!
Cheers,
David
____________________
Sarc. w/paresthesia, musc stiffness/weakness, tinnitus, sudden BP spikes, migraines, sinus probs, sleep probs, big toe pain, spontaneous "sprains" in feet w/out injury, sudden nausea, dry eyes, heat intol, nocturia, pituitary damage
|
Cynthia Schnitz
Member
| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
| Posts: | 554 |
| Status: |
Offline
|
|
Posted: Tue Jul 28th, 2009 18:17 |
|
Hi David.
I think you have it backwards. The high carbs depress IP, not raise it, from the experience of some I have been reading about.
I am not sure where the idea came from that D2 had anything to do with supplementation. Most food labels I have seen say D3. I believe that for natural D content, D2 is plant source and D3 in animal source. Also, may I make the recommendation that the next time you go in for a D measurement, that you do it after being indoors for a couple of days, maybe on a Monday morning after a home bound weekend. I make this recommendation because I had what looked like a bad data point after spending half a day running around in my car on errands, completely covered except for my face which was in the shade of the car roof. But, by the end of the day, I could feel the heat on my face from the reflected light off the road. and the blood being drawn late the next morning. Plotting the data clearly showed a nice typical decay curve except for the above point, which was about 10 points high compared to the decay curve, and very clearly out of place.
Cynthia
____________________
Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
|
eClaire
Member
| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 342 |
| Status: |
Offline
|
|
Posted: Tue Jul 28th, 2009 19:08 |
|
gondwana wrote:
Before I forget, I was curous to ask, Dr. Marshall: The Phase 1 guideline is a carefully crafted document, and I notice that the 12 ng/ml reference is mentioned as "desireable" for Step Two of Phase 1, but not mentioned at all in reference as a condition to progressing to PHASE 2. Because this document is the result of very careful craftsmanship and regular updating, I must assume that this ommission is intentional. That being the case, what was you guys' reasoning for omitting reference to the "12 ng/ml rule" as a criteria for progressing to Phase 2?
Please see Dr. Marshall's 7/27 response to Alycia. I think he answers your question there.
Claire
____________________
38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
|
gondwana
Member
|
Posted: Tue Jul 28th, 2009 19:14 |
|
Hi Claire,
He does a great job explaining what his recommendations are, but he merely referred the reader to click on the link, which leads to the document in question. But that document still makes no reference to the 12 ng rule at the bottom, where the criteria for progression to Phase 2 are spelled out. I checked to see if it was a newer version, but that document still doesn't mention the 12ng rule. So I am confused. I am sure I am either missing something . . . or there is a reason why the "founding Fathers" have chosen to NOT mention it.
Or maybe my brain fog is too thick to see what you mean . . . ? I appologize if that's the case!
____________________
Sarc. w/paresthesia, musc stiffness/weakness, tinnitus, sudden BP spikes, migraines, sinus probs, sleep probs, big toe pain, spontaneous "sprains" in feet w/out injury, sudden nausea, dry eyes, heat intol, nocturia, pituitary damage
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 601 |
| Status: |
Offline
|
|
Posted: Tue Jul 28th, 2009 19:51 |
|
Hi David. 
Thank you for pointing out the difficulties in interpreting the proper "guidelines" to follow per the 25-D levels and starting phase 2. (And for opening up an opportunity to write out my newest analogy.  ) Your early symptom resolutions are encouraging.
First, on your 25-D test results. The tests are not sensitive enough to read any significance into a +/-2 point change in levels. And at lower levels (some where below 20ng/mL) it could be +/-4. Over the 2 years I have been reading posts I have seen a number of members get a rise in 25-D after a couple of months on the MP. I can't say if it was really due to dropping some of their D avoidance or just some kind of a hormonal re-balancing effect.
Dr. Marshall has already weighed in on the 'when is it ok to start phase 2' question and what I get from all of my experience/reading is...
1. optimal/desirable: 25-D is already below 12ng/mL
2. don't start: if 25-D is above 25ng/mL
3. if 25-D is between, it is a judgment call based on clinical history, symptoms, etc.
This is where I too, would appreciate more clarity on how to discern the right path for this case: Members who have been waiting a long time for their 25-D to drop, and some have to wait several years, generally fall into the category of "recovering metabolism."
Here is where the latest scientific understanding of the mechanisms of recovery on the Marshall Protocol come in to help make that judgment call.
Benicar alone appears to be sufficient to reactivate the VDR's operation. The anti-microbial peptides created by the VDR are now understood to be the actual agents the body uses to clear these stealth infections.
Therefore, it is theoretically possible that a person who never took an antibiotic for many years could achieve full recovery by simply taking the Benicar (at 4-6 hour intervals) until they were assured of recovery by the appropriate lab results and observed symptom resolution.
Knowing this, why would anyone rush to add antibiotics (more $ + more risk), when they have the option to let the body set a reasonable pace of recovery?
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 601 |
| Status: |
Offline
|
|
Posted: Tue Jul 28th, 2009 20:31 |
|
As for the assumption that the "physician guidelines" are like the 'law'
and 'written in stone' ... well, it ain't so.
The newest guidelines are still a work in progress. They are the product of analyzing the most recent research results in medicine (especially related to immune function, the VDR and other nuclear receptors, DNA sequencing, etc. ) and then correlating those insights with the clinical experience of the cohort.
FYI, an interesting observation...
Low serotonin levels in the brain (another hormonal dysregulation) can lead to rigidity in thinking and a tendency to crave strict boundaries and guidelines. (Or so I've been lead to believe by recent reading.)
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
alycia2
Member
|
Posted: Tue Jul 28th, 2009 23:30 |
|
dear joyful,
i realize that this is not my post but i feel since dr. marshall did comment on my post to dave that it is ok for me to post this...
i am just taken aback by the caviler way in which this is all being dealt with. rigidity of thinking? craving boundaries and guidelines?...i have spent the past three months living with heart irregularities, low grf scores, fatigue, depression...etc...i have posted asking questions about the kidney involvement and i have kept in touch with my doctor...i read almost daily...and my daughter is doing the mp..with two toddlers at her side...which i am sure she would prob. not have found or done if it weren't for me...
i know when i signed up for this that it was experimental...so, i can understand that when new knowledge is discovered guidelines will change but, when a person is in the middle of something...new info gets tossed in (and really only found because i was reading) ..without much direction about what to do about it...being told that just because my doc works with a bunch of mp people...it doesn't mean he knows what he's doing...and it's my responsibility to figure this out and teach him how to treat me...when i am sick??? i mean, my god, and then make jokes about it...i'm sorry but there is nothing about this that i find funny!
your analogy of the waterfall just really got to me...i am trying very hard to listen to the people on the sidelines that have come before...that know the lay of the land as you say....but to me, it's unfortunate, because it seems like everyone is saying something different...and you know the deal about crashing on the rocks below...well, i've already been there...i would like to think what i'm doing now is trying to navigate and find a way back up from the bottom of the falls..
i called my doctor today..am going to have my blood work ran in the morning...if my d comes back high again...i think i will just go back to taking benicar...maybe in short order, that will be the new guideline to doing the mp...and if that's the case, that would be great! i have never liked to do anbx anyway...the deal is, i have had so much improvement..when i started the mp in nov. 08, i was practically bedridden..was ready to have my neck fused because of constant and debilitating pain...the brain fog was so heavy and i was starting to think about detailing my will and getting ready to go...so.
i do not want to stop the mp...i am so grateful for the help it has given me and do believe in time, my body will heal...it all just feels a lot like being out on a limb...in a tall tree without a rope..not knowing how you got up there and not knowing how to get down...your post certainly got my attention...so, i guess if there is a silver lining...it would be that...but, i didn't intentionally not listen, or do my homework...i did not realize that going onto phase two with high d levels was so critical to the success of the mp and that i was putting myself in harms way to the degree that you described in your water fall analogy..considering how i have felt since the zith...it is really scary to think about crashing...ending up in the er..or damaging my organs..etc...
i think if we need to wait until our d levels are at a 12 or <...more needs to be written about it. more attention paid to it...the guidelines more specific with warnings about moving on...my doctor has been in practice for many many years...he is a good doctor..i can't imagine him putting me through the mp on a fast track...when to do so could harm me...he is smart and the mp is as he says...his passion in life right now..i look forward to seeing him next week and figuring out what to do with all of this information...hopefully, we will be able to figure out what is best to do together..
alycia
____________________
tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 601 |
| Status: |
Offline
|
|
Posted: Wed Jul 29th, 2009 01:32 |
|
Dear Alycia,
I am so sorry if anything I wrote came across as flippant or alarmist. I would not want to come from either extreme.
The fact is that brilliant minds can get brain fogged and this is a true danger that people who think they can do this alone need to be warned about. This is whom I would be addressing. And if a little humor helps get the information across, I will try it.
The information about the 25-D levels is something that has only recently been emphasized. As you can imagine, with an all volunteer staff, simply staying up with questions is hard enough. Add to that international travel & collaborations, demands from our personal lives, development of the new knowledge base, etc. and some times it is very trying to keep all the balls in the air. No, we don't promise to do house calls. But we are giving up our very lives to make sure those with a 'hopeless' diagnosis have to tools to find a way to live again.
If I had been posting a response to your question, I think the tone would be different. Honestly, I have spent most of my time over on the study site and am rarely able to give time to reading posts on this forum. I wish I could do more.
And yet I too, have been disabled by my condition. Two months ago, I couldn't even stand for more than a few minutes at a time and I felt unable to reason my way out of a wet paper bag. 
The reason the MP ever came into being is through people sharing their experiences in a support forum format. It isn't very 'neat & tidy,' but there are people here who care very much and will do their best to assist in any way they are able.
Your other concern comes about because even the very best doctors struggle to realize how different the same antibiotics will affect someone taking Benicar at the MP dosage levels.
Many of them don't even think twice about pushing patients to 'ramp up' to max dosages quickly as they are unfamiliar with the powerful immune responses that just Benicar alone can provoke.
I will never fault anyone for being too cautious. Especially if they must work and/or care for children while recovering their health.
Please do talk with your doctor about taking a 'break' from the antibiotics so you can enjoy some of your new freedom from symptoms. At least I think it's a good idea.
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
alycia2
Member
|
Posted: Wed Jul 29th, 2009 02:07 |
|
thank you for your reply joyful...and i know all of you work so hard to keep this forum alive...and i do appreciate it more than i can say. i too try to help with posts to new people and well wishes...some about experience...it is so important that we all support each other and i am prob. sensitive right now because i haven't been feeling well and with bad numbers coming back on my kidney functions...etc..it's scary..plus, i, like so many have been through the wringer when it comes to medical treatment...i thought i finally found someone that knows what to do..it has been a relief to be sure and then it felt like that was being challenged...
i have worked so hard to try to figure out what has happened to me over the past few years...and i have tried very hard to understand the mp and do it per guideline so i will get well..it's hard when there is always more to the story and it is given out like one "should know" the in and outs of it all....when it keeps changing...i'm not complaining...really, just worried about the state of my health...that of my daughters...and i just want to do this in the most efficient way possible..in a way that causes the least harm to my body...i want to get well..
sorry if my reply to you was hurtful in any way..not my intention to hurt..just trying to understand what i need to do next...and couldn't see the humor in the human experiment...experience.
will feel better once i see doc and decide what to do...
take care and rest when you can..
alycia
____________________
tested postive for lyme, 1,25D-44 25D-61. terrible neck pain, fatigue, light and sound sensitive, facial numbness,dizziness,insomnia,brain fog.started phase1 nov.08.phase2-feb27,09. current meds are benicar,zith,mino,tramadol,dramamin.
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 601 |
| Status: |
Offline
|
|
Posted: Wed Jul 29th, 2009 03:03 |
|
Thank you Alycia.
The higher kidney test results usually are difficult for a physician to understand and so their concern does pass on to the patient. But on the MP, most of those who have increased the Benicar during higher kidney IP find that the test levels come down (improve) ... just the opposite of what the doctor presumes will happen.
The Benicar affects (in a positive way) the very systems of the body that change those kidney numbers.
See these articles for more information:
Simple explanation of alteration in kidney function tests while on ...
Benicar Applications Beyond Hypertension - Marshall Protocol faqs ...
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
Current time is 11:09 | Page: 1 2   |
|
|
|
|
