I’m so glad you got a chance to read the articles on this site in greater depth. Thank you for your kind words about the articles, and I’m glad you found them to be informative.

It certainly seems like you harbor a high load of Th1 pathogens and I truly hope that you go after them with the MP!

I would say your hystorectomy could have been a double edged sword. The surgery may have cut out an infected organ and thus decreased your bacterial load somewhat. But at the same time, the instruments used for the surgery could have been contaminated meaning that the procedure could have introduced new bacteria into the area.

I leave for Portugal tomorrow and look forward to giving my speech at the conference. Thanks for your support and best of luck in turning your symptoms around.

Best,

Amy

That’s a very interesting line of research! Unfortunately I don’t have a written draft of the speech at the moment. I have created slides and notes about what I am going to say with each slide, but not a full text draft.

But I will be giving the presentation next week and then putting up a version of the talk ASAP on this site. I’m sure it will be on the MP site as well. So I hope you can wait a little over a week to watch the full content of the talk in video format.

I will also be writing two papers - one for the New York Academy of Sciences and one for Autoimmunity Reviews on largely the same topic. Those papers will not come out for several months, but when they do, they will have an even more detailed description of the model I am presenting.

In the meantime, after you hear the Portugal talk, fell free to ask me as many questions as you wish if you think the answer might have some relation to you work.

Best,

Amy

I read with interest the abstract for the paper titled “VITAMIN D INDUCED DYSREGULATION OF NUCLEAR RECEPTORS MAY ACCOUNT FOR HIGHER PREVALENCE OF SOME AUTOIMMUNE DISEASES IN WOMEN”, that you will be presenting to the Autoimmunity conference in Portugal this Sept. I wonder if you could please provide me with the full text version. I’m currently investigating the relationship of the condition PMDD ( once called Late Luteal Dysphoric Disorder ) on the expression of 125D during the luteal phase of menstruation.

Regards
Michael Conte

Thanks very much for sharing! That’s helpful feedback for LeAnne. I guess that just as the onset of light sensitivity is different for every MP patient, so the way it decreases after one stops Benicar.

I based my comment yesterday on the case of my friend on the MP who stopped Benicar and could feel her light sensitivity subside in a few days. But obviously in some cases it can take more time.

I guess the key thing though is that it does eventually subside. So if LeAnne has to stop the MP she will not have to avoid light forever - perhaps she will still be light sensitive for a few days or up to weeks, but then it will cease to be an issue.

Best,

Amy

I brought it up in the last paragraph but it’s not very clear. No, are far as I know, if you stop the MP you will not continue to be light sensitive. Judging from the experiences of other people I’ve known who have stopped the MP, light sensitivity gradually subsides within a few days of stopping Benicar.

So if you are forced to stop the treatment you will definitely not end up in the dark.

Best,

Amy

Thanks for posting. If my articles have helped you better understand the MP in any way I am very happy. As for as your concerns about the treatment at this point, I feel all of them are valid and I understand where you are coming from.

It does sound like you have a high bacterial load, and you are right, Crohn’s disease can sometimes cause difficult immunopathology because while other symptoms increase gradually with antibiotic dose, bowel symptoms, as you know, can sometimes “flare.”

I assure you that Benicar will go a long way towards helping you manage you immunopathology and keeping the inflammation in your bowels under control. I also think that in your case, and in every case really, it’s important to move very cautiously on the MP until you are confident about what you can tolerate and how strongly your body will respond to the antibiotics.

When you start Benicar don’t feel bad about staying on just Benicar alone until you feel your body has really adjusted to the medication. You may even start to kill bacteria while just on Benicar because the medication will begin to activate your immune system once again. So even when just on Benicar you are making progress in the right direction.

When you start the antibiotics try to be patient and ramp very carefully. Report your symptoms as often as possible to the board moderators who are very good at spotting potential problems before you might. If your symptoms start to feel too difficult to handle at any moment don’t feel bad about ramping down or skipping an antibiotic dose. The goal is to avoid a bowel event or some other strong immunopathological reaction that could make things too difficult for you.

Also, don’t be afraid to use palliative medications if you really need help. I’m not sure what cognitive meds you are on now, but I guarantee that while they may have some effect on the immune system, you have so many bacteria to kill that they will not have a major impact on your body’s ability to target the pathogens making you ill. When I started the MP I was taking 6 cognitive medicines for sleep as well as painkillers that potentially had effects on the immune system and I progressed just fine.

In my opinion, it’s more important that you stay as sane as possible and keep your level of anxiety as manageable as possible. So using meds to better achieve that state is OK. Of course, if you don’t feel you are experiencing immunopathology when you start the MP meds then you might have to re-evaluate your non-MP meds, but I don’t think they will be a problem.

Make sure you give you body as much rest as possible and that you sleep as well as possible. If you’re not getting decent sleep every night, then I would take a medicine to help with sleep. I personally feel that patient’s bodies can simply not recover from the effects of immunopathology if they don’t get decent sleep.

You have several things going for you. The fact that you don’t have to wean off of steroids is a huge plus. Also, you have the right attitude. The MP is going to be difficult but you can make it work. If you don’t do the MP you will feel sick anyway, so you might as well feel bad in the name of recovery. You may deal with some tough periods of immunopathology, but if you think like that they should pass.

It also sounds like you have a supportive family, which is also very helpful. As difficult as it must be emotionally, not having to care for your son will remove a stressor from your life. I hope you can still spend as much time with him as possible, but most importantly, if you can stick with the MP you will see him graduate from high school, college etc. and be there as a healthy person for the majority of his life. The pay-off is worth it.

Personally, you come off as very intelligent to me. You may not be able to solve complex math problems, but you’ve been smart enough to think outside the box when it comes to your health and you sound very prepared in terms of the MP. Succeeding on the MP doesn’t require a precise understanding of the molecular science. You can trust Dr. Marshall to get that right and follow the treatment as directed.

But personally, I think you will find that much of the reason why you couldn’t perform well is school is not because you are not intelligent but because bacteria were and are interfering with you mental processes. During my last years of college when I was getting very sick, I started to lose the ability to do math problems or answer physics problems. I could no longer memorize. But that was my illness, not me. Now, after three years on the MP I have largely regained those facilities again. And as you said, it sounds like you’ve been sick your entire life. Never underestimate what your healthy self can do.

By the way, if things get bad and you have to stop the MP antibiotics and Benicar your light sensitivity should subside within a few days. At least that is what has happened in the cases I am aware of where someone has stopped Benicar. So when not on Benicar, you shouldn’t have to worry about avoiding light, although I would still never deliberately seek the sun.

Good luck as you move forward on the MP and I look forward to checking in on your progress.

Best,

Amy

Thank you so much for ALL of your articles. You are so gifted in explaining things in an understandable way. I have been reading the MP site for about two months and registered, but am still relentlessly searching for a doctor to get on board. With all of my reading so far, I have some questions that maybe you can answer from personal experience or at least offer your opinion. I feel a little discouraged because it seems all of the following make for a much harder time on the protocol: a). having a uterus, b). being on anti-anxiety medicine, c). having inflammatory bowel disease, d). having major cognitive trouble. Dr. Blaney talks about the bowel disease and difficult immunopathology, and also how antianxiety meds change how your immune system works. I have (previous) Crohn’s, then Lyme, and then burning sensations all over, esp. in my brain and spine, brain fog, neuropathy etc. I am just hoping I am not too far gone to succeed on the MP. I won’t know until I try, which leads me to my next question. Once I start the Benicar, and after two weeks get my D levels really low, then become very light sensitive, what if at that point I am unable to tolerate all the symptoms completely and need to stop the protocol? If I stop the Benicar, will I always be so sensitive to light? I am scared of being as bad as I am now, but then also being trapped in the dark. I am pretty much at the point where I have NO other options than the MP, as I guess is the case with all with Th1, so I don’t know why I am hung up on this. I just have to go for it once my doctor gives me the green light. He is supposedly calling Dr. Marshall this week. My other concern about the cognitive issue is that most of the success stories are from people who have shown signs of high intelligence and success prior to becoming ill (such as P. Bear being an R.N., or Alayne being an executive and teacher…). Personally, I feel I have been somewhat cognitively challenged my entire life. I attended two years of college, but then dropped out in utter frustration, as I failed so many classes, despite every extra possible learning aid and tutoring. I have always caught myself staring into space, having reading comprehension problems, and having general ADD. But in the past two years, I have had episodes such as Alayne’s come and go. From your babies and bacteria article, I understand now that I have been immunocompromised probably since birth, or soon after. I got shingles at 18 months, so I obviously already had immune trouble. I know with all Th1, it has been a lifetime accumulation, but in this case, would you believe someone like me could heal? I know I have a serious bacterial load and plan on the five year MP plan. I am married and have a four year old son, who will be taken care of completely by my husband and my parents and in-laws. My heart aches to miss out on so much of his life while on the protocol, but I am already rapidly declining, and it is only a short matter of time before I will be missing his life anyway. JR Foutin has been very encouraging on this issue. I think I am just pondering how much more difficult the MP will be, being a woman of child bearing age, etc. I am afraid of making things worse by causing all my hormones to shift, causing bleeding etc., and then not being able to do the MP. Please forgive me for for all the questions and concerns. I so value your opinion, and am thankful for your expertise. You truly are helping Dr. Marshall change the world one life at a time.
Thank you,
LeAnne Maready

P.S.- Interesting about “Sam’s” family and birth order? I am the last born of four kids, and see the exact pattern in my family. Your other article on Paul is the first thing I ever read about the MP, and it drew me in. I could relate to his food issues, as peanut butter makes me angry, corn makes me tired, etc.

Yes, if you have heart symptoms now, then your heart is infected. That means you will also experience immunopathology (the bacterial-die off reaction) in your heart which can flare your cardiac symptoms.

As of yet, nobody on the MP has experienced a serious detrimental event such as a heart attack from heart immunopathology. But just to be on the safe side, you will need to dose your antibiotics very carefully. You will also very likely need to do a modified phase of the treatment that is designed for people with cardiac symptoms. The moderators will help you with that phase when you get to that point in your recovery.

I highly doubt that anyone on this site can help you find a doctor. I personally do not have access to a database of MP doctors.

First off, have you discussed your desire to do the MP with the moderators at curemyth1.org? Because your case is a difficult one, you will definitely need their support and experience as your progress through the MP, so you need to become an official member of the study.

There are doctors who are knowledgeable about the MP, but most patients rely on help from the MP moderators when times get tough as they simply have the most experience dealing with such situations.

So try to discuss your desire to start the MP with the advocates at http://www.curemyth1.org. As you are introduced to people on the site, you may be able to ask others about a good MP doctor for you. Also, ideally, you could try to educate your current doctor about the MP so that he/she could put you on the treatment.

Good luck!

Amy