6 Jun 2009
Hello readers! Suffice it to say I’ve been missing in action for several months. For much of the time I’ve been traveling. Some of you may know that I just got back from China where I gave a speech at the International Congress of Antibodies. That will be the subject of my next post when the video of my speech is ready. In the meantime, I finally have time to give you an update of what I was up to before I left for Beijing…just to keep things in chronological order.
Several months ago I travelled to Vancouver Island to stay with Paul’s brother and his wife. It was wonderful to be surrounded by nature again! We took hikes through 200 year old forests and climbed gnarled driftwood on the beach. It was the first time I’ve sat around a bonfire since getting sick. I even got to take a horseback riding lesson and stayed on the horse!
Then, I went to visit my twin sister Sara in Dubrovnik, Croatia where she and her fiancee Tony live. Not only did I walk the city walls and streets with vigor (old town Dubrovnik is surrounded by an ancient fortress), but I got to see some serious water polo action between my sister’s fiancee’s club team, JUG Dubrovnik, and the top Serbian club team in the world.
The two teams are intense rivals and JUG won their biggest game of the year when I was there. The whole city went nuts and I got to participate in the celebration… and with the team no less. Sara and I also celebrated our birthday together in Dubrovnik – it was the first time we have been together for our birthday in about 8 years.
After that excitement I returned to New York where I worked on writing two papers for the scientific journal Autoimmunity Reviews. One of them describes how the interaction between human and bacterial genomes drives the autoimmune disease process:
Autoimmune Disease in the Era of the Metagenome
For the second paper I worked (with Paul, see below) to explain, as simply as possible, how the Marshall model of vitamin D metabolism contrasts with the current model of “vitamin” D’s properties currently put forth by much of the mainstream medical community. Among other topics, we point out how the Marshall model is supported by molecular data but certainly makes more sense in the face of research showing that the diseases apparently “helped” by vitamin D supplementation are actually becoming increasingly widespread:
Vitamin D: The Alternative Hypothesis
Also, I wrote press releases for both articles. These have sparked the interest of at least a few journalists and their publications including Science Daily.
I have also been doing my best to keep up with comments posted on this site. As you may have noticed, my trusted colleague, Paul Albert of Weill Cornell Medical College, has been answering some of the questions himself. I enjoy everyone’s comments but since I’m getting increasingly busy I’m sorry if my turnaround time is a bit slow sometimes. Or if I somehow miss your post or email it’s definitely not intentional!
In the fall, I will start graduate school at University of Illinois at Chicago (UIC) where I’ll be pursuing a degree in microbiology. The school appeals to me on many levels. During the interview process the school’s researchers seemed genuinely interested in my work with the MP. They asked questions, watched my videos, and truly appreciated the personal statement that I had labored over in an attempt to best communicate my passion for exploring the microbial world. Several researchers are studying biofilm bacteria, which is a topic of great personal interest.
In particular, one researcher, who graduated from Princeton rather recently, is working on bacterial communication in biofilms. He’s also very interested in the role of bacteria in chronic disease. He called me a perfect prospective graduate student, so I hope that I can live up to his impression of me. Obviously grad school will take up much of my time, but I need the expertise that comes with a PhD and I’m excited to better learn how to use some of the latest molecular techniques. However, I plan to try my hardest to continue to work with ARF on the side.
In less than a week I’ll be heading to Chicago for Sara’s bachelorette party – a three day bacchanalia with her friends from around the world. Then I’ll take some time to look for an apartment in Chicago and visit my family in the area. As soon as I get back my parents are visiting me in New York. Another reason I had to take some time off from Bacteriality is because I worked with Paul to design and write the content for Sara and Tony’s wedding website.
During my free time I’ll be working on another paper for Autoimmunity Reviews – this one will discuss immunopathology. I also plan to help Paul edit what I think is a groundbreaking project on his behalf – the MP Knowledge Base. Paul has been faithfully gathering both old and new content on essentially every topic related to the MP and is organizing it in easy-to-read articles on a very searchable website. His perserverence amazes me. While the site will take a few more months to complete, I’m going to review the major articles and try to ensure the content is in tip-top shape.
As I progress towards my grad school days I suspect my posts on this site will become shorter. Perhaps, in many ways, the Knowledge Base will replace the need for Bacteriality. But, if anything, I’ll still use the site to discuss my work at grad school and any conferences or scientific events I attend in the future.
16 Responses for "Travels, papers, and more… an update"
Does Dr. Marshall know you’ve been out in the evil sunshine?
Seriously, are you still on the MP drugs, or have you really been cured?
Thanks in advance,
Kelly
Hi Kelly,
Of course Dr. Marshall knows I was in the sun…he was at the Conference with me! I feel that you may have the wrong impression about light and the MP. When patients start the MP, many become photosensitive. It’s one of many symptoms that arises as part of the bacterial die-off reaction. For this reason such patients block light only because extra light flares their symptoms and makes them feel worse.
However if a patient doesn’t become sensitive to light, they are not required to block it. There is no strict “rule” about light. Also, as patients decrease their bacterial loads, photosensitivity resolves and they are able to tolerate more and more light. Finally, they reach a point where they are heathy again and can get as much light as any normal person for the rest of their lives. So the goal of every MP patient is to reach a point where they can once again be in normal lighting.
This article describes light and the MP in greater detail:
http://bacteriality.com/2008/02/23/misconceptions/#8
I’m still on the MP medications. I will stay on Benicar for many years after I am no longer symptomatic because of it’s organ-protective and immune stimulating properties. This article describes why I and others who reach a point of wellness still stay on the MP meds for longer periods of time:
http://bacteriality.com/2008/02/23/misconceptions/#13
Take care,
Amy
Welcome back,
I’ve missed your posts and I hope to have a chat to you about autophagy and the intracellular immune system at some point.
lots of hugs,
Chris
Hi Chris,
Thanks for posting. When I get back from Chicago maybe we could get in touch.
In the meantime, hope you are doing well!
Amy
Hey Amy,
Glad you are doing well….the article on understanding biofilms is staggering information to say the least. I pass along alot of the info to researchers and doctors and they all have some sort of intrigue.
I have been on MP now for a year…..diagnosis was Guinne Barre,Neuropathy,Bipolar,Tachycardia and CFS…..whew! The improvement is so profound from what it was it’s hard to find the words…..was extremely light sensitive for a while….I mean I could not look at an LED clock at night with Noirs on![the dark ones] Now….light is not much of a problem.The insight I have been blessed with through having all of these things and your website along with the MP website have been amazing. I have talked two doctors into prescribing the MP and they have a total of 35 patients on the protocol.
The first doctor put herself on the treatment after I explained it to her and she researched it….then she prescribed it for me!
I am hoping to go back to college and find my way into a degree that will allow me to work with MP patients in the future.I especially want to help people that really struggle with the psychiatric effects of TH-1 illness.
One question I have for you….you may think this was a stupid thing to start doing…I don’t know.
My herxing has been waning, but at times has come back with some pretty intense fatigue,anxiety,and muscle twitching.
I started working out with weights….lifting pretty heavy….and now my herxing is much more tolerable.
Zith does not seem to hit me like a freight train.
Now…..does exercise like this really affect the innate immune system that much?Do you think I am slowing down the destruction of biofilms….or could it be my testosterone could be normalizing?[It was very low] I know there is not much research available on this subject…..but you may have insights others may not as you like me have faced your disease and walked backwards out of it. Thanks, Sean O’Donnell
Hi Sean,
Good to hear from you! It’s wonderful to hear about your improvements!
I’m also impressed at how effectively you’ve spread word about the MP and even gotten more doctors interested in doing and administering the Protocol.
I think that getting a degree that would allow you to work with future MP patients – especially helping them deal with brain IP etc. – would be an excellent idea! It already seems like you are very good at talking to others about the MP. Then, you have your own experience with the treatment, so you would really be able to connect with the patients you would be helping. I say go for it and people like you will be of great help in the future..and now!
I definitely don’t think that exercise would hinder your recovery unless you are pushing yourself too hard. I know personally that when I start to feel better and want to exercise again I can sometimes overdo it.
Remember that your body is still killing bacteria and needs energy mount a strong immune response – so you don’t want to exhaust yourself too much with exercise. But higher levels of testosterone shouldn’t really be a problem, in my opinion, especially if your testosterone was low before the MP.
The main thing I notice with exercise is that moving my muscles causes them to become more perfused with blood. Sometimes I think this helps the Benicar and antibiotics reach smaller blood vessels and bacterial colonies that were not in contact with the medicines before. This can lead to new IP. So be careful to keep your exercise at a moderate level for a while in order to make sure that it doesn’t boost your IP more than you’re expecting.
But for now I think that you should enjoy feeling better and if you can do something like exercise..then do it!
Best,
Amy
Congratulations and a belated Happy Birthday, Amy! It is exciting to see your vitality and enthusiasm for life as we follow your contributions around the world, sharing the scientific-based knowledge regarding the Marshall Protocol and related research. Both you and Paul have partnered together on a one-of-a-kind journey that has been exceptional in assisting Dr. Marshall’s plight. Thank you for your work abroad, as well as on the homefront. Wishing you and Paul the best with your ambitious endeavors! How fortunate we are to witness and to be a part of history in the making! . . . Carole
Yea Amy!!! So glad to see your new posts. Really enjoyed them. Saw your stuff on the MP site .. loved the Panda hat and the one of you enjoying the D free shake. Made me ready to hop a plane to China and order one! Congrats on all the good in your life! I look forward to being in your shoes hopefully in less than a year. My MP birthday is coming up on August 8th (it will be one year!) So much has happened in terms of my health. Such profound changes. Phase 3 continues to amaze me. This has really been the most difficult phase to ramp as the abx combo is affecting so many things.
So great to hear that you are Dr. M are being so well received in the scientific community. I can only expect that the MP acceptance in the coming year is going to multiply drastically … because of your efforts
Looking forward to your future updates!
Best,
Shari
“My herxing has been waning, but at times has come back with some pretty intense fatigue,anxiety,and muscle twitching.”
Still sick after a year? That sounds like a very effective treatment protocol! I wonder what else could cause fatigue, anxiety, and muscle twitching… hmm… how about hypovitaminosis D?
Daniel,
I have stated many times on this site that it usually takes the average MP patient at least 3-4 years to reach a state of recovery thanks to the MP. The amount of chronic pathogens in most of the disease states we work with is tremendous.
So it’s not surprising at all that a patient would still be symptomatic a year into the MP. Also, at such a point in their recovery, the patient is not experiencing symptoms of their disease as much as symptoms of immunopathology or bacterial death. More about immunopathology here:
http://mpkb.org/doku.php/home:mp:immunopathology
Anxiety, muscle twitching etc are characteristic of Guillain -Barre Syndrome. There is no doubt such symptoms should be returning as Sean experiences immunopathology.
Plus, if twitching etc, were due to hypervitaminosis D, then everyone on the MP would develop the same symptoms since all our subject avoid D. But the majority of patients do not exhibit the symptoms you are concerned about, and immunopathology manifests very different for each person. It generally correlates with the exact symptoms of the disease or diseases a patient targeting with the MP.
Best,
Amy
Thanks for your reply Amy to my earlier post…it’s been awhile, but I just have a few comments.
You said:
“I feel that you may have the wrong impression about light and the MP. When patients start the MP, many become photosensitive. It’s one of many symptoms that arises as part of the bacterial die-off reaction. For this reason such patients block light only because extra light flares their symptoms and makes them feel worse.”
This is completely contradictory to what Marshall stated 3-4 years ago. He insisted that patients not only be covered at all times, but even when they’re indoors. I would argue that most patients are extremely sensitive to both light and sound, even without the meds, or before taking the meds. I’ll trust your word that the meds may increase this effect.
You then said: “However if a patient doesn’t become sensitive to light, they are not required to block it. There is no strict “rule” about light.”
Again, I guess this has completely changed, as for years, if anyone had problems on the protocol they were often blamed on not following it strictly, to say the least.
I’m also puzzled by your characterization of a drug as being ‘organ-protective’. I know two people whose endocrinologists insisted they be taken off the Benicar because they were losing kidney function. It took one friend almost six months to recover from that, and she was extremely ill in the first place.
In your reply to Daniel, you state that anxiety and muscle twitching are related to Guillain -Barre syndrome. I’d just like to add that (as you suggested), they could very well be indeed related to low vitamin d, but also low calcium, low magnesium, heavy metal toxicity, fungal infections, low b-12, low iron, anemia, low carnitine, and on and on and on.
Heavy metals, especially those hidden in tissues that are hard to detect even in hair mineral tests, are one of the lesser known causes of muscle twitching, because they alter other electrolytes. Just something to think about. Andrew Cutler PhD has some excellent info online if you’re interested.
Anyway, I appreciate you answering my question above. From what I gather, not even Dr. Marshall has stopped taking the drugs…so I guess once on the MP, you’re on it for life?
To me personally, that would be scary, but I can understand when one feels better, it’s maybe scarier to stop the drugs.
Kelly
Hi Kelly,
Thanks for posting but you are asking questions that have already been answered on this site. Please, please try to read the material here to look for answers before writing me.
Yes, several years ago all MP patients were required to block light. Then at least two years ago (or more) Dr. Marshall and team completely revised the light guidelines to reflect what I wrote in my earlier post. The new guidelines can be found on the MP study site – http://www.marshallprotocol.com
Yes, many patients are still very light sensitive but some are not, particularly those with a lower bacterial load.
Benicar has anti-inflammatory properties that are exerted via the Nuclear Kappa B Pathway. I recommend watching this video to fully understand the multiple effects of Benicar:
http://bacteriality.com/2008/05/07/mpintro/
Those doctors who took their patients off Benicar due to kidney levels that went temporarily out of range were doing EXACTLY the opposite of what is stated in our guidelines. This article explains why leaving the patients on Benicar would have almost certainly yielded better outcomes for them. Unfortunately we cannot control what doctors do and many of them do the MP incorrectly.
http://bacteriality.com/2008/02/23/misconceptions/#6
I cannot prove to you the twitching etc are not hypervitaminosis D symptoms. But that explanation makes no sense whatsoever if you read our papers on vitamin D metabolism. I recommend starting with this one:
http://autoimmunityresearch.org/transcripts/AR-Albert-VitD.pdf
No, people do not have to stay on the MP meds forever although some people chose to stay on them even after they are not symptomatic for certain reasons discussed in this article (one of them is NOT fear of stopping the drugs):
http://bacteriality.com/2008/02/23/misconceptions/#13
Hope this helps,
Amy
Hi Amy,
congratulations on all you are doing with your life! I am so happy you made it to Vancouver Island, BC. I live in Vancouver, well just outside, and it’s nice to hear people talk about travelling to our part of the world.
I am also Croation, but came to Canada at 5 years of age. So I was twice excited about your other travels to that part of the world. And wow, you have a twin sister!
I often come to your site when I need a boost of courage and I read the success stories and review conference videos etc for more knowledge and insight and more importantlly, MORALE. Thank you so much.
I have had CFS for over 20 years and have been on MP for 10 months. I have had to take benicar alone as the IP was intolerable with the antibiotics. However, after this short period on MP, I do notice that I sleep better and those of us with CFS know how insommnia impacts our total being. The other thing is I have been able to almost get off the antidepressants that I was on for 15 years which were prescribed for pain, fatigue and cognitive difficulties. I am at 1 mg and hope by the new year to being totally off. And that is even with all our cloudy and rainy weather on the westcoast which can be a downer on mood. Most of British Columbians are schizophrenic and our moods change with the weather. It’s a main topic of conversation for us. Amazing how an entire city can be happy one day depending if it is sunny.
So if I have depression now, it is either from light exposure (we had sun yesterday and I had to go out) so today, mood is alittle low or it’s herxing/immunopathology. I am not sure when I will be able to tolerate the antibiotics again but the current path is just the benicar and even with it I have IP although it can be more subtle.
I too hope to regain my life as I continue to heal and have so much to catch up on as many of the other posts have also stated. I got sick at age 31, so there are many, many life experiences to catch up on.
Thanks for all that you have shared, I always learn something and appreciate your dedication to responding to all the posts. Good luck with your future studies and continuted good health.
Regards,
Elizabeth
Hi Elizabeth,
Thanks for writing and for your kind remarks about my research/future. It is a coincidence that you are from Croatia and now live in BC. Both beautiful places! I find it interesting that so many people in BC are affected by the amount of sun they get. It certainly shows a connection between mood and vitamin D production, IMO.
I’m so glad you are doing the MP and it sounds like you are making good improvement. I think Benicar alone is quite potent (certainly the key aspect of the MP), so I expect that you are still killing quite a few pathogens on a daily basis. I hope that you do heal and improve as soon as possible as I certainly understand the feeling of catching up on lost time and getting your life back.
Best,
Amy
Hi Amy:
Do you know of any MP docs in the Chicago area? I live here and am having a hard time finding a doctor.
Any ideas you can provide will be appreciated.
Thanks,
Leah
Hi Leah,
Typically patients ask for a list of MP doctors from CureMyTh1.org. However, I’m not sure how up to date our list is for Illinois. I would ask for it anyway though.
Here’s our general Knowledge Base page on finding a physician:
http://mpkb.org/doku.php/home:starting:physician:finding
Regards,
Paul