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Julia
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Posted: Wed Jan 30th, 2008 20:57 |
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Mel,
The moderators are volunteers and can't be at the MP site 24 hours! I'm sure you'll get a reply soon. But I can tell you now what you'll be told - you need to go back to doc and get the 25-D done 
Julia 
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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mebauer
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| Joined: | Fri Jan 11th, 2008 |
| Location: | Minnesota USA |
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Posted: Sun Feb 3rd, 2008 22:57 |
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Is there any information on why people with CFS have such sugar/carb cravings? Is that the case with all TH1 diseases?
Also, I have read through the information on the diet and the tips section as well, but is there any place that members have shared recipes? Just wondering...that would be really helpful...I know to read labels, but varitey is essential to keeping a good diet going!
Thanks!
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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eClaire
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Posted: Mon Feb 4th, 2008 02:05 |
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Somewhere in the main site there are a few recipes included in a lot of other information. Also, Knochen (another MPer) has this site with a few recipes: http://www.geocities.com/knochen_mp/index.htm. Claire
See FOOD questions & suggestions
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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mebauer
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Posted: Sat Feb 16th, 2008 00:08 |
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I am going to my appointment on Monday to hopefully start the MP. I am wondering if there is anything I should have prepared to take with for my doctor and any labs to suggest I have done prior to the MP other then the 1,25-D and 25-D as those are done.
Also, any suggestions for medications that will be of help for symptoms that may arise during the MP...sleep meds, pain meds???? I am currently not taking anything except occasional Advil. I just have read so many people's experiences with sleep disturbance and such and would like to have others opinions.
Lastly, any other tips or suggestions prior to beginning that should be discussed with my doctor???
Thanks!
Mel
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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eClaire
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Posted: Sat Feb 16th, 2008 03:00 |
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If you have not prepared your doctor in advance or if you doctor has not already agreed to do the MP, you need to have your approach down pat.
What I did was have a one page summary of important information with URLs, a bunch of printouts that I could hand the doctor in response to anticipated questions (I only handed them over if a question was asked and was prepared to go home with any of them that did not answer a specific question asked), and a list of what I needed from him to begin the protocol. (Because he was a new doctor, I also had an activity matrix and a symptom matrix so that he could be apprised on the extent to which my illness debilitated me.)
Some people would say I had too much information and could have overwhelmed the doctor, but this doctor took the time to go through the symptom and activity matrix first, then reviewed the one page summary, and gladly accepted each handout that I gave him in response to a question. (And I think the fact that I didn't throw everything at him at one time helped.) By the end, he was fairly confident from everything that I said and did (my organized approach) that I had a real handle on the MP and could get most of the support I needed on this site even though he expressed a real commitment to become knowledgeable.
If your doctor has already agreed to sign on, I'm assuming that you already know that you want your doctor to provide you with enough Benicar so that you can have a six week lead time to have your prescription refilled (you want to have six weeks on hand if you order Benicar out of the country). It's best to figure that you will need 40mg at least q4h (although you may find q6h satisfactory and should assure the doctor that that's what you will take unless you need more to quell an intolerable IP response). You need that prescription of 50mg Mino (which needs to be cut in half). If you can get him to write a prescription based on the count (# of pills) at say four a day, then one month's supply (120 count) has a chance of lasting a long time. (This is valid approach to writing the prescription because it is a possibility that you might need to take it 25mg q6h to quell a particular strong IP response.)
Also, you should consider asking for a standing order for the following lab work to be conducted every 6 to 8 weeks (plus any other labs that your doctor thinks is appropriate for your situation): CBC, CMP, and 25-D (1,25D does not need to be repeated).
You ought to definitely talk to your doctor about pain palliation in advance. You might not ever need it, but if you do, you'll want to be able to get to it quickly. This link will tell you about the kinds of pain control to consider (note that some meds used to control pain do not interfere with the immune response and might be appropriate for use): http://www.marshallprotocol.com/view_topic.php?id=4446&forum_id=37
I don't know if you have had a positive experience with sleep meds in the past--I have not--, but it doesn't hurt to explore this idea without your doctor, making sure that anything prescribed is not on the list of meds that are contraindicated for the MP (it might not hurt to have that list in your back pocket). I found it best, for the most part (except when there was something I definitely had to do the next day), to just sleep when my body lets me to sleep. Mostly, that has me doing a split sleep schedule (early evening and the following morning or next afternoon). (But I am mostly homebound and so this is not an issue for me.)
I have heard/read it suggested that it is a good idea to get a low dose of Valium (brand only) and take as little as you need to help with anxiety, insomnia, and other IPR (it sometimes helps take the edge off of pain). It may or may not do the trick, but you should see reference to this in the link above. I found that Valium oddly makes my anxiety stronger and so that's not what I do for my anxiety IPR (I have other techniques that I would be glad to share if you run into difficulty).
Nothing else to speak with your doctor about, but if you have not already done so, make sure your have your NoIRs and have blacked out your windows. Having a stocked pantry of easy to make foods and a stack of books and magazines to read doesn't hurt either.
Hope this helps (and wasn't too long), Claire
Last edited on Sat Feb 16th, 2008 03:03 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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mebauer
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Posted: Fri Feb 22nd, 2008 01:32 |
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Well, I had my appointment today...The doctor had me do a bunch of orthostatic blood pressure tests (lay, sit, stand) and I did well! He prescribed the Benicar 40 mg and set me to start with 100 tablets to take as directed!
I am to start with 3 pills a day for the first week and check my BP daily...if I tolerate it well the second week I can move to every 6 hours! My BP was 110/65 today and last time it was 90/? so it's always different...
I'm on the right road, finally!
"Thanks to everyone for their help and support!
I'll start as soon as my awesome shades arrive! 
Mel
Last edited on Fri Feb 22nd, 2008 15:24 by mebauer
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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Knochen
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Posted: Fri Feb 22nd, 2008 11:43 |
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That's great news, Mel!
Be sure to have everything else in place, such as having the light blacked out from the house. You may become very light sensitive and may not have the energy to be putting up window treatments once you get started. Prepare to be out of commission just in case. Most people don't get a strong reaction to benicar alone, but some do!
Hope your Noirs arrive soon so you can get started. Congrats on getting the doctor on board. Good job!
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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mebauer
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Posted: Fri Feb 22nd, 2008 15:31 |
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I live at home with my family presently...I will not be able to block out all the light
I plan on spending a lot of time in my own space with the light blocked out and wearing my "shades" and much clothing when not in my room...hopefully that will work!
Mel
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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Knochen
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Posted: Fri Feb 22nd, 2008 16:21 |
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I live at home with my family presently...I will not be able to block out all the light
Well, that will make life a little less easy, but as long as you have a TV, the internet, and air conditioning in your darkened area, you should be OK. Just don't forget to cover the skin and eyes when you venture out. Light flares are no fun.
How about meals? Is the family (or at least whoever's cooking) fully on board with the MP? There are contraindicated foods everywhere, so you have to be extra vigilent until you see your D's get into the working zone.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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mebauer
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Posted: Fri Feb 22nd, 2008 17:50 |
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I make my own meals...I don't eat with them, as I already know my body doesn't like anything that isn't meat, veggies, fruits, and whole grains...I've been eating this way for awhile now. I'll be able to handle that and if not my mom will help, she always does.
When you say until my D level's at a working zone, what range do you mean? What's the magic #...I've read a lot, but is it below 20 and optimally at 12 or lower??? My 1,25 D was 54 & my 25 D was 18....
Thanks, Mel!
Last edited on Fri Feb 22nd, 2008 17:53 by mebauer
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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Knochen
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Posted: Fri Feb 22nd, 2008 20:22 |
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What's the magic #...I've read a lot, but is it below 20 and optimally at 12 or lower??? My 1,25 D was 54 & my 25 D was 18....
If your D25 is at 18 already, that's super. You should do well. 12 or lower will really get things rolling, but you'll be getting a lot of benefit right away. Hopefully the D1,25 will come down soon too; you are obviously converting at a rapid rate which is helping to keep your D25 level down. It will be interesting to see where the D25 is in 3 months or so if you decide to have it tested.
We'll be looking for you on the study site when you get started. Good luck!
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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mebauer
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Posted: Sun Feb 24th, 2008 21:04 |
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Well today is the big day...I started and have taken 2 doses of Benicar & I feel the usual symptomatic hightening as I do with every medication...So, I'm still hopeful yet contemplating why this happens with every medication I take.
The biggest problem I have is the neuropathy I developed following a one time dose of Zithromax...It gradually got worse then better and following different medications gets worse and worse. I took a VERY LOW dose of Amitriptyln to help me sleep and ended up with rushing electrical sensations, rainy vision, ringing ears, etc. I then stopped that medication and those things went away. I put myself on a pretty strict diet of all fruit, veggies, whole grains, etc. and walked 2x/day following a meal...this completely helped and in fact got rid of many of my symptoms.
I did well until Christmas/sugar season hit...I relapsed and went back to feeling awful and run down. I then tried an herbal suppliment for energy that was also supposed to work on cortisol in the body...that increased all symptoms like the Amitryptlin did and has been that way for a yr now since. Also I have been on other things since like 3 antibiotics for possible Lyme, an Antiviral, Armour Thyroid, and IV Rocephin...I get sicker when I take anything and it's not just antibiotics!
So, I'm just wondering if anyone has any rhyme or reason for the exact same symptom flare from all of these different meds. I believe the MP is the only thing I've found to make sense, but it's so agonizing when no matter what you try symptoms get worse & worse...
Thanks, Mel
*SORRY about the Medication spellings...I know they're not right, but am to drained to look up the correct way...
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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JRFoutin
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Posted: Sun Feb 24th, 2008 22:07 |
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Mel,
Glad to see you have started the Marshall Protocol. Good for you! You already know 2 doses of Benicar do not make a Benicar blockade just yet and I'm sure your experience with immune suppressants and other medications in the past are very real and upsetting, but you may want to know more about what is happening right now as your system is introduced to Benicar.
Be sure to refer to your Phase 1 guidelines, starting with page 4, step 5 that refers to some of the medications you have referenced (the discussion is about avoiding them, but there are insights there you may appreciate). Then be sure to read step 6 Benicar information.
From the MarshallProtocol.com study site, you may also want to read:
Benicar-Basic Information
Immunopathology Tutorial
How to Identify immunopathology
How To Manage Immunopathology
Again, glad to see you are reading and learning and taking action.
Best to you Mel--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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mebauer
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Posted: Sun Mar 2nd, 2008 19:58 |
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Ok, so today is day 8!!! So far I have been indoors mostly, but also walk outside 1-2 times a day for 20 minutes covered (except part of face) & with noIR's. Since the start I have slightly elevated symptoms, but all tolerable.
I went in the car for an hour trip each way yesterday, and felt the same as I have all week. I also had my shades taken off by my friends 2 yr old outside and inside in a gym. I didn't really have any problem with it...it just was a little bright.
I also rode home part way in the dark looking at headlights the whole way. I didn't feel any big side effects from that.
So, my question is this...is it just that I'm only a little sensitive? Sometimes I have to lift my Noirs up on the computer to see things as well and that doesn't seem to bother me either.
I've read others posts and am just wondering would I be really bothered in all of the situations listed above if I was really sensative???? Just wondering!
Thanks, Mel
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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JRFoutin
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Posted: Sun Mar 2nd, 2008 20:15 |
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Mel,
The Effect of Sunlight/daylight and Bright Lights has specifics to answer your questions.
Also, 8 days into the MP may not give you enough experience on the MP to determine just how photosensitive you will be over time. If it was me, I'd think on the information sets and determine it was better to play it safe and take precautions during phase 1 than to find out your sensitivity presents profoundly but different than you expected. 
Best to you Mel--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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mebauer
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Posted: Sun Mar 2nd, 2008 22:32 |
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Thanks! I guess I'll just wait to see in the next few weeks how it goes....maybe I wont need to take my Noirs off in the house to see sometimes and I will get more sensitive.
Mel!
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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Chris
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Posted: Mon Mar 3rd, 2008 00:32 |
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Mel,
The light sensitivity may vary depending on what antibiotics combination you are using. So don't assume that if sun exposure doesn't cause trouble in the next few months, that it won't cause trouble later.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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mebauer
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Posted: Mon Mar 3rd, 2008 20:22 |
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I'm just wondering about those on the MP for Lyme's Disease...I was put on a 4 wk course of IV Rocephin in Nov. '07...I know a lot of people report feeling better while on the IV Rocephin, but are there any members who felt worse during the IV treatment?????????
I actually felt worse and worse on the IV and also stopped early due to the increase in my symptoms....I also had a decrease in WBC's & elevations in my liver enzymes....a lot of my symptom elevations that occured I have every time I'm on any meds. (even now on Beni).
Just wondering...I'm trying to weed out if I really do react to medications negatively or if it is herxing on all meds????
Mel
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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Julia
Member
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Posted: Mon Mar 3rd, 2008 22:54 |
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Mel,
Please see IV Rocephin, which may give a clue to your experience.
Julia
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
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mebauer
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Posted: Wed Mar 5th, 2008 19:46 |
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Hey all! I have noticed something this winter that I have never noticed before...
I have purple/red zig-zag lines all on my legs esp. my upper thighs (Front). It is worse on the Left leg and also that leg gets more cold than the other. This has to be a circulation problem?!?!?!?
I'm freezing all the time and with my neuropathy my toes/feet are the worst. Did anyone have this and did it resolved with the MP?
I know it may have been there all during my illness but I went tanning enough to keep a bronze tone and didn't notice it ever during that time. Prior to being ill and not tanning I didn't have this.
Any palliative things I could use??? Ted stockings????? I fear that somehow my circulation will fail and cause the coldness/tingling esp. in my feet to last forever.....
Any knowledge or advice would be very helpful!
Thanks, Mel!
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CFIDS, peripheral neuropathy 125D54 25D18(Feb08) Ph1Feb08 Ph2April08 25D17(April08) Ph3Sept08 25D10(Nov08) Ph2redoJune09 25D10 (Nov09)
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