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mebauer
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| Joined: | Fri Jan 11th, 2008 |
| Location: | Minnesota USA |
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Posted: Fri Jan 11th, 2008 18:15 |
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I've been spending a lot of time researching the MP and e-mailing a few different members. I'm so hesitant because I've been on several medications in the past 2 years and seem to get hightened symptoms when using anything. The doctor's I've seen can't seem to fing anything wrong with me other then a low WBC count and now recently allergies.
I have a magnitude of symptoms. My whole body tingles with a neuropathy that I developed when I was sick with Mononucleosis and had a bacterial infection along with it. I was given a 1 dose antibiotic and the following day I had tingling started. I also have fatigue, allergies, problems with digestions, ringing in my ears, dizziness, metalic taste in my mouth, receeding gums, chronic candida infections, dificulty thinking, hormonal imbalances (lows) and so much more.
I still have no diagnosis, but have been treated with no results for chronic lyme (which tests were negative & I never had), chronic viral infection (given an anti-viral), and some chronic fatigue syndrome treatments (thyroid pill & antiviral)have been used with no success. My doctor that I have been with for the last 6 months just gave up on my case and told me to try to live with the disabilities I have as he has nothing else he can think of to try & medications seem to make symptoms worse.
My problem is this...I no longer have a doctor, I'm scared because medications make things worse but if I don't do anything I dont get better. I really fall under the CFS diagnosis and want my life back. Can anyone tell me how long it took before you started to see positive results on the MP?
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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
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Posted: Fri Jan 11th, 2008 19:15 |
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Hi Mel,
Welcome to our MP questions board. I suppose your doctor is as frustrated as you are. When they're faced with things they weren't taught about in medical school, it's tough for them - but tougher for us!
Could you please say which meds have made you worse? It could be that you were having an immunopathological response to antibacterials. That would be a good sign that the MP is right for you.
Your symptoms certainly sound all too familiar. You might like to compare them with this list: Hypervitaminosis-D Symptoms. If you've been doing a bit of reading, you'll have seen that the only tests you need for the MP are the D-Metabolites (click for instructions).
The reaction to medications that we all get on the MP is a sign that the treatment is working. It can be largely controlled by adjustment of the dosage and timing of the meds. There are experienced moderators constantly available with advice - you are never alone  . It's essential to keep in touch with them, even when you feel you're doing well (yes, there are good times too!).
As to how long it will be before you start to feel better, it's hard to say because everyone is so different. Some members (like me) had great improvement right from the start. Others have to wait a bit longer. Please see (filelink) CFS success stories.
Here are some more links to have a look at if you haven't already:
"What is the Marshall Protocol?"
Simple Explanations
Essential Information About the Marshall Protocol
Marshall Protocol FAQs
Phase One Guideline
Please ask any further questions here at your own personal thread. You've come to the right place
Julia 
P.S. I added some spaces to your post to make it easier to read, as many of our members have difficulty reading on the screen
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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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Knochen
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Posted: Fri Jan 11th, 2008 20:12 |
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My doctor that I have been with for the last 6 months just gave up on my case and told me to try to live with the disabilities I have as he has nothing else he can think of to try
Perhaps if you study up on the MP to the point where you can discuss it well with your doc, you can present this as a treatment you can try. After all, the doc did say that he was out of ideas! Tell him here is something you would like to try, you'll be sure to keep in touch and be monitored and see how it goes, etc, etc. Sounds like you might have a fighting chance of bringing this doc on board if you can present it right.
Feeling "better" can be hard to define. I feel "better" than when I started, but I still feel lousy a lot, but I know what's causing it and I have control over how bad I feel to a great extent. And I will eventually be well, I'm certain of that. The healing process requires some discomfort, it's just what happens when you kill the bugs!
What Julia says is good, the fact that you do have a reaction to medications is a very good sign that the MP will work for you. You'll be having more of them, but with Benicar and careful control, you'll make it tolerable.
Take your time learning about the MP - don't rush. YOU need to be able to explain it to the doc - most won't really take the time to learn and understand. So read, read, read! The key thing is that you have to know the MP well enough that you won't be leaning too hard on the doc. Be willing to sign a release form if you think that would help. You'll have the experienced moderators on the main MP board to assist you as you go along, so you aren't alone.
What you are shooting for is a situation where YOU will be directing your medical treatment with the supervision of the doc to keep tabs on you throughout the process. Offer it as a "learning opportunity" in a case that he otherwise would have given up on. Say something like, "After all doc, we can't win if we don't try! I'll do the heavy lifting and try to stay out of your hair, but I need you to write the prescriptions and do the blood tests."
You have come to the right place. Getting started is the hard part, so keep your courage up.
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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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| Joined: | Fri Jan 11th, 2008 |
| Location: | Minnesota USA |
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Posted: Sat Jan 12th, 2008 01:11 |
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I've been reading all night and following the science behind the MP, and although it's hard to hear because I didn't learn it in nursing school it seems so accurate and hopeful.
The first reaction I had was due to the antibiotic Zithromax ever since then I've had a neuropathy. Following that I have been on many different antibiotics and most recently IV Rocephin for possible Lyme disease. My symptoms really highten during the treatments of all of these and my labs get worse. My WBC count lowers and my AST & ALT also elevate.
My symptoms also hightened when I was on a low dose of Amytriptylin to help with the neuropathy and get me to sleep at night, so it's not just antibiotics that highten symptoms.
I'm certainly going to get started as soon as a find a doctor in Minnesota and am very interested in seeing what my Vit-D levels are. I really can't afford to drive 8 hours our of state to see the doctor who has given up on my case & no longer want to. I will continue to search for a closer doctor and one willing to try the MP.
Thanks for your encouragement!
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: Sat Jan 12th, 2008 11:07 |
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Mel,
Your reaction to Zithromax would fit with a diagnosis of Th1 inflammation. Interestingly, we have another member who had a very rough time pre-MP with the antidepressant Amitriptyline, as it seemed to cause worse depression.
We wish you every success in your search for a doctor. This link should help: Suggestions To Get Your Doctor On Board With the MP.
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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Reenie
Member
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Posted: Sat Jan 12th, 2008 17:31 |
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Hi Mel,
You said you no longer have a Dr and that your Dr has nothing to offer you.
Is it that your Dr now refuses to see you? You also said you went to nursing school so I'm thinking you are now unable to go to work at your occupation?
The reason for my questions is that even if your Dr is no longer able to offer you anything to help you feel better or recover, if he/she is still willing to be there for you for such items as bloodwork, pain/sleep meds, completing any disability forms, etc, you may not want to quit him/her even if you continue seeking other help and another Dr to help you along the way to recovery via the MP. 
I've had to add an MP Dr to my entourage of specialists and healthcare pros rather than replace my GP or endocrinologist that I regularly see. In fact, they all perform necessary (and different) tasks for me although they are not all "on board" with my treatment plan on the MP.
Just as Julia and Knochen point out, the road to recovery may make you feel worse at times and you will want someone to be able to assist you with your disability and someone that already knows you might be in order.
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mebauer
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Posted: Sun Jan 13th, 2008 20:32 |
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So, if I react in a negative way to antibiotics that is a good sign this could really help me? Does that mean that the antibiotic is really irritating the L-form, but not killing them?
Also, from what I've read it just seems so unreal how much the stories of CFS match my own life. It's going on 2 years now and I am currently not able to work, and have explored so many different treatments that this seems to be what I want to do next. I just really want a doctor with some experience with it and who will listen.
If anyone from Minnesota has any suggestions on a doctor (as I am waiting to hear back from one MP doctor now) I would love to hear from you.
It is hard to work with a doctor that feels there is no answer or solution and that you should just try to "do your best" and get a job or do aerobics as a hobby when it's difficult to even force myself to take a shower daily. (These were the suggestions I got from my doctor on my last visit to him).
Thanks for the feedback!
P.S. My doctor that I was working with for 6 months also said he may not fill out my disability forms and thus I am wondering if anyone has feedback on the ability to work during the MP. I don't feel as if I'm able, but financially I can't go on like this.
Last edited on Sun Jan 13th, 2008 20:42 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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eClaire
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| Joined: | Thu Oct 18th, 2007 |
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Posted: Sun Jan 13th, 2008 23:56 |
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Mel,
As you have experienced with some meds already, when you go on the MP you no doubt will feel worse before you feel better. So if you are unable to work now, you will likely be unable to work for a while on the MP.
I have two suggestions for finding a doctor who might be able to help you and may be able to help you with your disability application (you will need to get your records from the last few years--those that show your declining health--sent to the doctor you find).
1) Get the doctor list from the MP and also try to find the email address of whatever general practitioners you can find within traveling distance. You can look up doctors who work and teach at any major medical facilitiy, as well as in private practice, and focus on people who might be interested in assisting you/following you on the MP. Using this method and sending an introductory letter about the MP, I found one doctor who, after some research, agreed to do the MP with me.
2) Start asking around in your community whether anyone knows of a doctor with experience with CFS patients, particularly a doctor who has a relative (the closer the relative the better) with CFS. (A diagnosis really does not matter for the MP, but it does matter for social security.) This doctor may be more familiar with diagnosing CFS and therefore able to provide you not only with the help you need in applying for disability but also may be interested in learning more about the MP. This is how I found my current doctor (I decided not to use the doctor I found via email because she is over an hour away, but she has agreed to be my backup in case anything should happen to my current doctor)--my doctor's wife has CFS and so he is very interested in what I am doing on the MP. (I had a doctor previously, but he closed his practice rather unexpectantly and so I had to go on a doctor hunt after being on the MP for a while.)
Hope this helps, Claire
See Disability and DISABILITY Benefits
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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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| Joined: | Fri Jan 11th, 2008 |
| Location: | Minnesota USA |
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Posted: Tue Jan 15th, 2008 18:32 |
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I have made an appointment with a doctor about an hour from my residence who was on the MP doctor list. I have a lot of prepared history for him to read and am hoping he will help me and start the MP as it is my wish.
I have a question about how the phase 1 goes...I know that the Benicar is every 6-8 hours and the addition of the antibiotic is every other day. Is there a link to how to up the dosage and how you know when to move on to the next phases???
Thanks...I'm re-gaining hope!
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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: Tue Jan 15th, 2008 18:58 |
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Mel,
Please see Before You Begin the Marshall Protocol, and Phase One Guideline, which has precise details of how to do Phase 1. It's a good idea to print it out and keep it by you for reference, and also give a copy to your doctor. Make sure you order your NoIR glasses, as they can take a while to arrive. See Protecting Your Eyes for instructions.
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 Jan 16th, 2008 18:34 |
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I've read the MP extensively and have a few more questions...If the first phase takes 3 months (give or take), and the Benicar is started for 1-2 weeks and then the antibiotic is added at 25 mg increments each week then is the goal to be on the 100 mg dose until there are no more herx's occuring (at about 3 months time)?
Or, is it that it may take more then 1 weeks time between uping the dose by the 25 increments?
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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: Wed Jan 16th, 2008 19:50 |
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Mel,
The Phase One Guideline says,
stay at each dosing level until the Herx is minimal. Allow a week or more between increased doses When the Benicar blockade and 100mg of Minocycline every other day no longer produce a significant Herx reaction, the patient is ready to proceed to Phase Two.
So you're right that the goal is 100mg mino qod (every other day) without herx. And you're right that it might take more than a week at any one dose. If the herx is still going strong, you do another week at the same dose. There is no advantage in hurrying, because it appears that some bacteria are more susceptible to certain doses.
Have I understood your question okay?
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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Reenie
Member
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Posted: Fri Jan 18th, 2008 18:16 |
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It is hard to work with a doctor that feels there is no answer or solution and that you should just try to "do your best" and get a job or do aerobics as a hobby when it's difficult to even force myself to take a shower daily. (These were the suggestions I got from my doctor on my last visit to him)
Ahh, yes, I remember this only too well. 
Fortunately for you, Mel, there is more factual info today than there was 10 yrs ago for me, when I first applied for disability. I went thru the same thing with several different GPs and specialists before finding a physician that agreed with me that I was actually too sick to work.
You might need to focus your energy (and I know it's very limited) on first getting yourself situated with a Dr that is ready, willing and able to help you along with basics such as disability forms, palliative meds and any day to day issues you may have while you're too sick to work and/or function.
If I had to choose between finding an MP Dr and just one that will at least vouch for me and listen to me, I would have to say I'd first look for the one that will listen to me as a patient. It would be great if you could find ONE Dr that will both listen AND help you with the MP, but that may not be possible.
Please let us know how it goes with the new Dr. I wish you the best.
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mebauer
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Posted: Sat Jan 19th, 2008 22:34 |
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I am seeing a doctor this week that was on the MP list...I sent all of my information and am praying he will help me on this journey.
I have another question. I recently went to see a doctor about allergies and was told I am allergic to cats, dust mites and I think pollen. I have never had allergies prior to becomming ill in 2006, so it suprised me, but after all of the CFS reading I am no longer. My question is this...I was given allergen drops (not a shot) to use sublingually 3x/day. They are drops of antigens to battle the allergies I have. When I start the MP should I stop the drops??? This is the only "medication" I'm on.
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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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Jan 19th, 2008 23:01 |
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Mel,
Why not wait until you are on the MP before asking Doc about the necessity of desensitization. You may find that the 'allergies' disappear fairly quickly.
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Julia
Member
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Posted: Sun Jan 20th, 2008 13:57 |
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Mel,
Nearly all my multiple allergies have gone on the MP, most of them fairly quickly. They sometimes come back briefly as immunopathology, and I occasionally take an antihistamine pill to get me through.
As Dr Marshall says, wait and see! A healing immune system is no longer 'out of sync' with the world, but copes normally with the various things life throws at it, instead of over-reacting.
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: Mon Jan 21st, 2008 20:17 |
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That sounds like a good idea! Thanks!
Also, I know not to eat Omega 3 capsules, but it is ok to eat nuts with Omega 3, right?
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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 Jan 21st, 2008 20:54 |
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Fresh nuts (not roasted with additives) are great little protein packages... in small doses if you need to watch weight at all 
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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: Tue Jan 22nd, 2008 18:39 |
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| I'm just wondering what happens if I react while just on the Benicar for the first 1-2 weeks? Does taking the Benicar q 4 hours help to lessen the herx then? Last edited on Tue Jan 22nd, 2008 18:40 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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Julia
Member
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Posted: Tue Jan 22nd, 2008 21:07 |
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Mel,
Many members starting Benicar have no adverse reaction. I only had some increased fatigue. But if you do find things a bit rough, you'll be posting in your progress report in the Benicar only Forum, and you'll be given advice there that fits your own experiences
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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