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neldawhite
Member in Phase 2
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Posted: Sun Apr 12th, 2009 23:55 |
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Happy Easter
“Are all your eggs in one basket”?
To all my fellow Mp’rs who have to deal with the skeptics in their lives my heart goes out to you. I’m sure most of us on the MP have gotten that look….you know the one where they have that little comical bubble over their head that says “This MP sounds so whacky”. And you can picture your hands going around their neck… but you just offer a wry smile and struggle for what to say. It’s that look of pity that really boils my blood. But thank goodness I’m smart, level headed, and completely secure with my decision based on knowledge from studying this site and the wonderful layman words of our own Amy Proal, topped off by the discoveries and scientific video presentations by Trevor Marshall. By the time I’m done with any of my skeptics I actually feel sorry for them. Sorry that they cannot or will not see the light, or the whole picture. In all candor I think many of my skeptics actually believe the science I share with them. The fact that most of us are harboring disease causing microbiota scares the heck out of them. That fear breeds a skeptic. My goodness does that mean they will have to give up French toast and stay out of the sun too? Gasp!!!
I’ve learned that there are some people in my life who will not accept the Mp as sound science (not that they have tried to learn it). My sister, whom I love said to me over the holidays “Nelda, it sure seems like your putting all your eggs in one basket. What will you do if come 2-3 years down the road you are not better. Won’t you be devastated”? (Other friends have also asked similar questions) I guess she was truly worried for me and the MP is complex so without reading it and studying the science you might conclude that it’s a bit far fetched. And of course the Vitamin D science and avoiding sun does fly in the face of current main stream medical advice. So in order to help her with her concern for me I numbered out my thoughts to make it clear. My goal at this point was not to have her leave as an MP believer but just to understand why this MP is so right for me. To help her not to worry about me or assume I will be devastated at some point.
1. I have been ill for 25 years and getting worse each year. I barely made a dent in my symptoms by taking daily doses of a cupboard full of prescription and over the counter medications for back pain, shoulder pain, full body myalgia, weight gain, uncontrollable hot flashes, Reynaud symptoms, swollen lachrymal glands, a face that felt like it was in a vice, anxiety attacks, heightened startle response, exhaustion, bouts of irritable bowel, rashes, headaches, breast calcium deposits, high cholesterol, allergies, food sensitivities, circulation problems, sinus infections, arthritis pain, wheezing, chest wall pain, inability to regulate body temperature or sweat, easily overheating, short term memory loss, brain fog, declining math skills, stuttering, frustrating restless leg syndrome & degenerative disc disease. Whew and I’m sure I’m missing some.
2. My right eye was basically displaced from it’s socket by extreme swelling of my lachrymal gland and my eye surgeon and Rheumatoid Dr. told me it was an auto-immune disorder with no cure and my only treatment was steroids, and by the way I had Sjogrens and Fibromyalgia diagnosis also.
3. The 5 months of steroid treatment was living hell. I’ll leave it at that as I could write a book on how horrible I felt and how frightened I was while on it. Not to mention how bad it is on the body in general. And it doesn’t cure anything.
4. Both my eye surgeon and Rh doctor examined the medications used on the protocol and offered their blessings. They said that while they did not know how much it would help, the medications were safe and if it were them they would try it. And of course my prescribing doctor who supports the MP whole heartedly said the science seemed very exciting. They agreed by using pulsed dosing I would not develop immunities to the antibiotics and the Benicar studies showed that taking higher dosages would not hurt my blood pressure. The only thing they were not sure of was reducing Vitamin D. Said they had not studied current science on that one. I told them there was some really cool molecular modeling done my Dr. Marshall that they should check out.
5. Then I had to weigh out my current quality of life and what would be different while on the MP. Again on one side of the scale was an established cure. I stayed in doors most of the time any way due to sun sensitivity and sun exacerbation of symptoms, exhaustion and anxiety.
Who wouldn’t change their diet to get well.. that was an easy one.
Darkening some rooms. No big deal compared to steroid use and daily illness and pain.
And the great news is how much calmer and less anxious I became almost over night by darkening the rooms and keeping the sun out of my eyes and off my skin.
And of course the knowledge of the expected IP. Yeah bring it on since it can be nothing but the killing of bacteria if you read the science and the results of the Study Site it is an obvious positive consequence of the medication and the work of Benicar in awakening our immune systems. So far the trade offs are absolutely worth the lifestyle changes.
6. Then drum roll….here is the biggy for me. I looked at my sister with tears in my eyes and sat up real tall and said “Here is the kicker. Every day I was ill and hopeless was a day filled with darkness and fear, bordering on depression. I felt like I had a poison in my body that only I could feel. The mental anguish I was going through could not be measured. It could not be seen or heard and it may have looked to you as if I was doing okay. But trust me sis I was not okay and you knew that.
The day I found the MP science was like a rebirth for me. Now you can warn that I may just be ‘drinking the cool aid’. But this cool aid is not poison but scientifically sound medicine based on a ton of observational as well as molecular science and will not hurt me. (Of course I don’t go into all the intolerable IP but you get my drift)”. And I go on to say “If at the end of some 2-5 year period I am not totally better….but I have lived those years with hope, education, a better understanding of how my body works coupled with all the pain and anxiety free days that I have already experienced …then how could I have lost. If you are worried that I will fall apart because I have done this hard thing and in the end it was all a joke..then I appreciate your concern but life and particularly my health is about the “journey” and I’m not spending each moment looking for some end point of proof that this has succeeded.
I’m living each day happier right now. Each day that I don’t live with fear and hopelessness is a better day for me. Each day that I take my antibiotics and Benicar and know I am killing bacteria because I can feel my symptoms rise, is a day I know I’m healthier than the day before.
Maybe I don’t feel well but I am literally healthier. It is liberating to have a plan. I know how my medications will work. I have access to the path and stories of the hundreds of others who have gone before me with intricate details of their journey. I get much comfort from this knowledge base and rely on it to guide me.
Will killing all these bugs cure me of all my symptoms? Well time will tell. All I can go on is what it has done for hundreds of other people. If I am never cured but I can wake up each day with this new found hope and that is “all” I ever get…well that will be enough for me…it is way more than any mainstream medical doctor could offer me. But keep in mind this hope is not based on my unreasonable desire to get well.
There are hundreds of on line solutions that claim to help my ailments. My mainstream doctors had their prescription pads ready for medications to help with most of my symptoms. I did not choose them. I chose the therapy that had sound science, with common sense solutions and an astounding track record for success. One that was also supported by 3 doctors that personally examined me. My hope is based on that science.
I want you to be happy for me that I found this science now and not two or three years from now. Who knows how sick I would have been then. And if you can’t be happy because you still don’t believe it will work, then at least don’t worry about it’s safety or about how I will feel some day in the future. Your concern is flattering but it is based on ignorance because you have not studied the science.
And if you are worried about the expense or safety of the drugs I’m taking keep in mind that right now I should be taking Prednisone, Effexor an antidepressant, hormone replacement therapy, Lipitor for cholesterol (which our 60 year old sister died from an acute liver failure reaction to..she was not qualified to receive a liver transplant as she also had heart failure) Requip for Restless Leg Syndrome and Lyrica for Fibromyalgia.
How scary does all of those sound with all of their side affects and expense. So this analogy of “all my eggs in one basket” is based on your perception of how I am “framing” the MP. I don’t hold out hope for some magical destination point where in when I get there and my ‘basket’ should fall and ‘all my eggs break’ then I have lost everything.
My destination point is today, I have already won because I have started to heal already, I have hope and a better quality of life already. I have found the science. I’m not still in fear and groping in the dark like all those main stream medical doctors.
My goal is to be as healthy as I can as many living days as I can.
I remind her that based on her analogy I could be hit and killed by a truck 2.5 years into the MP. Would it have all been a waste? NO way. Because it’s helping me today. I’m calmer, usually no daily pain, hot flashes diminished some, eye has remained calm even off prednisone, I sleep better, I can stand up straight, no sinus infections, and best of all I’m not afraid and I have hope and a plan and all my fear has diminished. Wow you can’t buy that.
But I do think we have some responsibility to those who are concerned for us. I think when we start the MP we do sort of hold out for that magical time frame. We all hope for the 18 months to cure instead of the end of the sentence 4-5 years or longer.
The Mp does not make promises or mislead when it comes to time lines. All our microbiota are different and our disease state is different so we will heal at different rates.
Who knows how we will control our Vitamin D and light levels or how hard we will push our IP or how our organs will respond. These are the unknowns and it is not fair to mislead family and friends with a time line. One of their first questions is always “How long do you have to avoid the sun”? I wanted to sugar coat it in the beginning so I would say or 1-2 years but I’ll probably be getting better by then. Now six months into the MP I just say if I am not that sick with bacteria then I should heal pretty fast. But if I’m still experiencing IP for 2-3 years then that means I was much sicker than I thought and thank goodness the drugs will continue to kill bacteria for as long as I need them to. I also remind them not to worry about me avoiding the sun because I feel so lousy when I’m in the sun anyway. I tell them when my body has healed I won’t be so sensitive and I will be able to come out and play. And I explain how I love questions about how my IP is coming along. So often they asks “Are you feeling better”? I remind them that while healing and killing bacteria I will not feel better so feel free to ask what my IP has been like this week, or if I have been able to increase my meds. Now those are question I can deal with.
I tell them I am so looking forward to healing and getting cured and I don’t mind being the test subject in the family who will blaze the trail of new science. I tell them it is not easy to comply with lifestyle changes or handle the IP, but I am brave and strong and I am willing to do this for my quality of life. Yes I brag on myself a bit as the MP is not for wimps.
And then the icing on the cake…and this is true….my sister tells me her last blood test showed she was really really low in Vitamin D and her doctor wants her to start supplementing with extra Vitamin D each day. She asks what she should do. She is 58. Well if you knew my suspicious, worry wart, computer illiterate, hypochondriac, anxiety ridden, brain fogged, asthmatic, Sjogrens syndrome, rash laden, allergic, very sweet Th1 sister like I do, then you would also have been thrown into a pretty severe herx. I just patted her shoulder and said…mmmm don’t think I would do that, but I have some articles for you to read about Th1 and low vitamin D levels…maybe you can give them to your Kaiser doctor. (In print of course since she does not even have an email address). I then secretly blessed myself and changed the subject. She knows….don’t think she doesn’t. We actually talk all the time about the MP she is just a big chicken, has to work, and really is using me as the “test subject”…I don’t mind accept for the fact that I know her bugs are growing like mad and causing her more and more disease. And I love her so much…Oh well…there is only so much I can say.
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Fibromyalgia |swollen lacrymal glnd with blurred vision Dr. suspects Sjogrens|3 yr chron HFlash |arthritis | Deg Disc Disease | panic disorder| Chr. Sinusitis | Calcium Deposits in Breast | Ph1MP Oct 19 08 | Ph2 Feb 09 09 | 25D 28 on 2/09 |Tylenol | Sudaf
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Dr Trevor Marshall
Research Team
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Posted: Mon Apr 13th, 2009 00:39 |
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Happy Easter, Nelda, (and family) 
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Scarlett
Member in Phase 3
| Joined: | Mon Mar 3rd, 2008 |
| Location: | Ohio USA |
| Posts: | 110 |
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Offline
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Posted: Tue Apr 14th, 2009 17:48 |
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Nelda,
And congratulations on saying it so well on behalf of all on the MP.
Scarlett
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Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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