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New Doctor - New Ideas - Could This Be The Answer, Or At Least A Part Of Our Puzzle?


issie

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GastroCrom has been one of my best meds!!!! That along with Allegra and Zantac.

Rama, not sure how many there are - but, you get a whole lot of them tested with 23&me there are thousands of genes tested. As for the methylation pathways genes (I'm not home and can't count them - on hubby's computer). But, there is a whole typed page that is sorted for you with Genetic Genie. Then comes the research and trying to figure out what it all means and what needs to be done to get around it.

Issie

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23&me, they lowered the cost as they are trying to get 1million subjects and i think this will be permanent cost for awhile, also offerring refunds for those that bought at $500 or something like that since November fyi. One of biological aunts, and i am not name dropping but worked for apple and vp for Bgates did the test. and she is by far from dumb much smarter than me obviously. she coined the phrase "continuous partial attention" in 1998. also coined "email apnea" in 2008 which means "a temporary absence or suspension of breathing, or shallow breathing", while doing email and i know i do this. she is also into heartmath so you can google that.

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Has she gotten her results back yet? It will be interesting to compare notes and you two can share on 23&me and get into the genology. Lots of people do it just for that and to find family connections and where you're from. That can determine some of the genetic things that may not make sense. It breaks out the percentage of your race and can even determine from which area of the country you're from. It's really pretty interesting.

Issie

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Issie - To answer your question as to why I am not following the MCDougall diet Dr. Fry recommended, I feel there are too many other things going on in me to eat such a restrictive diet. While I do need to destroy biofilms and starve parasites, I have to be delicate with my gut, kidneys, liver and everything else since nothing is functioning properly. Grass fed butter has SO many healing properties. One protein in grass fed milk / butter is lactoferin. Lactoferrin has a strong affinity to iron and binds to it so it can get delivered to the cells instead of being robbed by pathogens to further build their biofilm. Magnesium is vital to so many processes, that even though the biofilm uses it to get stronger, I can't deprive my body of it. Magnesium could help remove calcium from the biofilms as well. Bone broths help heal the gut and the natural gelatin helps with connective tissue.

I'm chelating the heavy metals that are breaking up by oil pulling and brushing with food grade activated charcoal. The aluminum in deodorant lead me to making homemade deodorant and my migraines decreased in frequency just a few days after I made the switch.

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Nicole,

I use the Immune Formula of Symbiotics Colostrum - it has lactoferin in it. I have used it for a long time and it helped me tremedously with my gut issues. (I have to admit Butter is the one thing I think I miss the most. :( ). Since, it sounds like we have both had issues with bad overgrowth bacteria in the intestines - I understand your concern there. I don't ever want that again. (Posted about this on another thread.)

I understand about liver and kidney issues. As I have problems with both. I have a really bad lesion on my liver and my P450 pathways don't work properly. And for Kidney, I'm now in 2nd Stage Chronic Kidney Disease (was in 3rd) the diet has actually improved my kidney function. My doc says I will be his 3rd patient that may possibly reverse kidney disease with this diet. One of his other patients was near to having to have a kidney transplant and reveresed their kidney function to normal. I'm hoping mine continues to improve.

I was very hesitant to give up my magnesium - as I really believed in it's use. But, since I'm eating all vegan and have plenty of fiber there is absolutely no problems with elimination and I'm sleeping just fine and my muscles are not cramping up any worse without it. So, thinking I'm okay without it. There is magnesium in the foods that I'm eating and if the body starts to assimilate things better and it gets the mineral and vitamins from the foods I'm eating ---the idea is for me to slowly be able to get off of most all supplements.

I'm still not sure about the one article that was posted about the protozoa and Vit D levels. According to that article the protozoa likes for the Vit D levels to be above 40 - as it helps them to survive. My levels are now at 50. Since I think the Vit D has helped my bones to get better and has reversed my osteopenia to normal ranges - afraid to not keep taking my Vit D at the level I'm at to preserve my levels at 50. Since I have the VDR mutation too and my body has a hard time utilizing Vit D ---thinking that this will just be something that I will have to continue despite this one article. I will ask the doc about it the next time I see him.

It will be interesting to see how we fair with such a different approach. I have read of other doctors recommending these things too. But, just wasn't sure if the different type of protozoa require different approaches. Since I'm sure that my protozoa is FL 1953 - I have DNA of it - I think Dr. Fry must know what affects them and tend to want to stay with what he has told me to do to eliminate them the best I can.

I did however ask if I could add DHA from an algae source to my supplements - as I felt like I needed essential fatty acids for brain function and my skin was starting to be really dry. He said that would be fine and I found one that is seeming to make a difference for both of those things. Interestingly, Life Extension just had an article on DHA and Vit D combination helping Alzhemiers. So, good thing - I guess. I sure don't want that. And with the brain fog that POTS brings ---it's a scarry thought.

Keep us posted on how your diet and supplement routine is going. We will have to compare notes and see how we are doing.

Issie

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  • 2 weeks later...

Just another point regarding the fact that Fry and other parasite docs are not able to get their stuff published, think on this:

In the 1950s, there was no proof that cigarette smoking caused lung cancer. The connection was as obvious as the layman’s observation that smashing your finger with a hammer would cause pain and even the town drunk knew it was true, but, to the medical establishment’s position was, “there is no proof.”

No one had ever produced lung cancer in animals by exposing them to cigarette smoke. In fact, my pathology professor, Dr. Jack Strong, had trained monkeys to chain smoke, and after years of smoking, none developed lung cancer. Yet, he was convinced that smoking caused lung cancer. Dr. Alton Oschner, founder of the famed Oschner Clinic in New Orleans, led the charge in proclaiming the link between cigarette smoking and lung cancer. It took almost another decade before the medical establishment was willing to admit that smoking caused most cases of lung cancer.

Almost 30 years passed from the time some iconoclastic men of medicine tried to convince the medical establishment that smoking caused most cases of lung cancer until it became generally accepted. The question that needs to be asked is: How many people died of lung cancer, the most prevalent cause of cancer death in the United States, during this time? Data from the National Cancer Institute estimated that in the year 2004, 157,000 people died of lung cancer. If 80% were secondary to smoking, that would be 125,000 dead. Over a ten-year period that would be over one million dead and, over 30 years, almost 4 million people would have died from a preventable cause of death that, at the time, was still being hotly debated by the medical establishment. Lung-cancer death rates were actually higher during that time period.

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You havent brought up the old chestnut of how medical professionals looked upon anyone who questioned Thalidomide's safety with scorn. its a good point - established view isnt always the right view and Ive never said otherwise.

But I can make up a theory for you any day of the week. Ill just put in the words 'pathways', 'autoimmune' and 'methylation' a few times, tie into another nebulous theory that is popular at the moment (candida, adrenal fatigue, or leaky gut) and whalla - we have a theory! The difference between my theory and views supported by peer reviewed medical research is that one has to be supported to the extent that other trained professionals concede it has some support the other just has to impress some patients.

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the town drunk knew smoking was dangerous? maybe we should ask him what the go is with POTS!

LOL ---I knew that was coming. :)

I have to say that I think Rama is not saying that this may not have merit. But, that there may be more to it then just Lyme or protozoa as causing the issues. I will have to agree with this. Dr. Fry is not saying that this protozoa is "causing" POTS ---but, that it could be contributing to the blood flow issues to the head. As far, as I know he never said it is the "cause" of POTS. But, I do think it has some merit and could be complicating the issues. For those of us that have tested positive for the protozoa or Lyme or co-infections ---we know this is one of our issues ---treating it should bring about improvements. The main focus is diet ----how could that be a bad thing? But, I'm not sure that it is the "all" the "everything". But, diet is something that we have control over and if done properly should improve our health.

I'm actually, pretty tired of all the debate and back in forth. We that have this and have tested positive ---know that we are in an experiment. We don't know what the outcome - long term - will be. But, we choose to be in this experiment and see where it leads us. This infection is known to infect families and can be spread even to an embroyo during pregnancy. It is also known to invade and break down collagen. So, it could affect EDS. If a person chooses to look into this or not ---is up to them. My purpose of this thread is to throw another possible idea out there. We all ultimately are trying to find answers. If this helps one person to find something that may give them more quality of life ---then I accomplished my goal.

Issie

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  • 4 weeks later...

Okay, here's an update. I'm into my fourth month of treatments and there are subtle improvements. The biggie and most exciting is a complete REVERSAL of Chronic Kidney Disease. I was in level 3 (one more level and they start to talk about dialysis), with low GFR's to a normal level in the high 90's Most don't think that Kidney Disease can be reversed. But, my doc and I have proved this wrong. I'm his 3rd patient that has had this improvement.

As for POTS --the improvements are very subtle. But, any type of improvement I will take. I notice that I can stand longer without as much dizziness. My brain fog seems better and my brain is back in gear. I've noticed the veins in my legs especially look better and the little small spider veins are totally going away. My skin looks much better and eyes are clearer. My heart rate is some better - not shooting up as high. I still have the Hyper response with the high blood pressure ---but, that seems a small amount improved. I hardly have edema at all now. There are seldom any GI issues - except nausea that comes along with MCAS. But elimination completely normal and no bowel pains etc.

He says I'm still in the early stages of treatment and for there to be these types of improvement so fast --he is thrilled. You have to go really slow --as when you start to have the biofilms release from the side walls of the veins - you don't want such a rapid release as to cause a blood clot. So, it has to be a slow process. He feels that treating the immune system is the correct direction and is the direction that we are going.

Dr. Fry, just got back from a seminar/lecture in Poland. He said that with POTS patients they are finding CCVSI with these patients. He still feels that getting rid of the biofilm communities and what they house (protozoa, bacteria and virus) and allowing the immune system to recognize and eliminate these invaders ---will correct a lot of the issues that POTS people and even CFS people have. He believes that CFS is autoimmune also and connected to pathogen issues.

I asked when he expects to be published and he is expecting that this year. I guess there is a lot to having this happen. You have to belong to some sort of organization and then have things reviewed by these and all evidence and testing submitted. He is very close to being peer review published. He has backing from some big name doctors. It will be nice when he has life work published. Maybe, then there won't be such criticism. His patients are proving that there is improvements and the treatment seems to be making a difference.

I still believe that autoimmune dysfunction is the key to us finding help with our POTS and whatever dysfunction our immune systems have created with us --being addressed - can only prove to give us positive changes. It has been worth the journey I'm on. The diet is a little challenging --but, proving to be a really good thing for me to do. If I have this sort of improvement in only 4 months what will a whole year bring?

I'll keep you posted on my results.

Issie

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Thanks Rachel!

I was talking to Dr. Fry today about glutamates and if there could be a connection to POTS and/or if there was a connection to the protozoa. He said that he does believe there could possibly be a connection to the protozoa. He said the best dietary way to lower glutamate is to lower gluten. I found several articles that may support this.

Issie

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I do think that there could be an excitatory response that an imbalance between glutamate and GABA could give, if there isn't enough GABA to moderate it. Sort of the difference between the sympathetic (overdrive) and para-sympathetic (moderating) opposites of the spectrum.

I found several articles saying that there was a connection between gluten and MSG to too much glutamate.

Strangely enough, you'd think using GABA would correct this if there is an over-abundance of glutamate. But, I paradox with any med or alternative thing connected to GABA. Instead of it having a calming effect on me --it does quite the opposite.

Issie

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I think, he was just mainly referring to what I could do diet wise --for a few seconds of a conversation ---he didn't have time to go into a whole lot of science with me on this. But, if eliminating completely gluten will make any difference in the surges that I get --I'm all for eliminating it. I know I have high NE levels. But, possibly issues with NMDA could be at play here too. NMDA has to do with glutamates. I was checked a few months ago for antibodies to GAD65 which is antibodies to glutamate. There has been one person recently that posted as to testing positive to this and who has POTS. So, there are some connections (possibly) to high glutamate levels and POTS. What the connection is ---is a whole new field to explore. I know they are trying to connect high glutamate levels to ME/CFS. Recently read an article on that. It also can play a part in stiff persons syndrome ---and we've had one POTS person that I remember who finally did get DX'd with this. So, there could be a connection.

My connection was with having a really bad mast cell reaction to aspartame (which is a glutamate) and having to go to the ER and spend the night in the cardio unit. So, I know it can cause a really bad POTS or MCAS attack. Found that out by experience --the hard way, no doubt.

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These are pretty speculative. There is some interesting conjectural stuff on NMDA receptors and CFS - particularly given that some patients respond well to a number of MNDA antagonists. But the reason for this is unclear.

Im not saying its a load, gluten has saturated the modern diet in the last few hundred years.

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If one is sensitive to something --then even a small amount will react in the body. It may be immediate - or it may be delayed. You may feel bad and not be able to figure out why. It could be one simple thing to avoid and it may make a world of a difference.

I tend to agree with some who think the connections with ME/CFS is so close to POTS. It may be like one person told me ---another part of the same animal only observed from a different angle. I think if there is a cure found for ME/CFS then POTS won't be too far behind it.

Issie

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Guest maia

Congratulations on the reversal of your kidney issues, that is wonderful! Go you! Also very interesting about the arginine connection with these critters.

Argenine also feeds viruses and argenine and Lysine have an antagonistic relatinship. I wonder if adding lysine would do anything too?

Mind if i ask which herbs are you taking? Do you know about teasel? Its quite often effective at breaking them down.

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  • 3 weeks later...

I'm trying to keep all the information that is new and relevant to this protozoa in one place. I found an interview that Dr. Fry did on the protozoa that he discovered and you can see from the interview why it may be relative to and have an affect on POTS. It's exciting that there may be an explanation for many of the neurological issues and possibly diet could correct a lot of the problems. This also tells why he feels that low fat and not using magnesium and arginine are important. Could it be that we are creating a lot of our illness due to ignorance? Could we correct some of our problems with diet? I'm doing a lot better. Not well - but, noticeable improvements.

http://protomyxzoa.org/wp-content/uploads/2013/04/Protozoal-Infection-Dr-Frye-Interview.pdf

Issie

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