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

[ramakentesh]

I have some concerns about this topic I would like to respectfully share:

• I can't find a scientific publication that mentions Protomyxzoa rheumatica,
  
• the consensus among most doctors is that Chronic Lyme infection does not persist after antibiotics course, from what I understand
  
• CCSVI is an unproven condition that has already led to deaths by surgery, from what I have read.
  
• I did find a discussion of this doctor's claims discussed in the blog post "Real Quacks, Imaginary Bugs", see relative-risk blogspot.
  

Here are some risks that concern me:

• CCSVI surgeries may lead to deaths, stroke and paralysis see FDA warnings in a Reuter's bulletin.
  
• Taking antibiotics long term may have cardiac consequences, cause fungal infections, etc.
  

thanks foggy brain - your brain isnt that foggy!

[ramakentesh]

But its even possible that small fibre neuropathy might be a consequence rather than cause of ppts through altered small vessel blood flow. Time will tell.

What? I thought the majority of us had neuropathic POTS - meaning this is the cause. Did a POTS Doctor say it might only be a consequence or is this your own opinion? Of course it seems a majority of the time they can't figure what caused the neuropathy, so I guess it could be the other way around... unless they start finding new antibodies or something else that can explain it.

I know one doctor who is adament that the neuropathy is a consequence of POTS (and that it can be exercised away) and another when I asked him agreed that there is a slim possibility that small fibre neuropathy could be a consequence. But the prevailing thought is that the neuropathy causes the POTS.

the doctor mentioned above believed that reduced blood flow to the small vessells was causing the neuropathy. He had no research basis for this statement but he is well respected.

[ramakentesh]

The fact that antibiotics help some CFS patients really only proves that antibiotics help some CFS patients.

The fact that a diet helps some people with various autoimmune diseases really only proves that a dietary change can influence the course of the illness.

Licorice is a fantastic example. It helped some with POTS and CFS so people rationalised its benefit by making it fit into their pre-existing theories about the illness at the time. That is licorice helps because it 'balances the HXA axis or what ever its called.'. Then when adrenal fatigue was the next offering suddenly licorice was 'boosting their adrenals'. then someone came up with the abnormal immune system function findings in CFS and suddenly licorice was rebalancing 'inductible nitric oxide' and then someone else worked out that POTS had low blood volume in many so suddenly licorice 'was boosting blood volume.'

Really we dont know definitely why licorice helps - the fact it does just proves that it helps. Id put my money on the blood volume angle but until there is definitive evidence then this is an assumption.

And far too often all these theories require a number of assumptions to be correct before they have any basis.

Final though - if you have EDS wouldnt it just be the genetic defect in the substrate of the veinous wall that is compromised? How would a protozoa that apparently only hangs out in veins rather than arteries (strange in itself given what we know about physiology) cause you to have EDS given its a genetic condition?

[issie]

Thing is not all EDS people have POTS. So, we can't say that the EDS is causing the POTS. Because then all EDS people would have POTS ---and they don't. That's assuming again, Rama.

Issie

[ramakentesh]

thanks Diamond - you raise some good points.

I didnt mean to sound like I was diminished Dr Driscoll in any way. What she is doing for you EDS guys is great and she is obviously investing lots of time trying to work stuff out. Im not suggesting anything negative about her or her intentions. My point was just that she is not employed at an autonomic centre or a specialist in neurocardiology. She didnt get involved in researching EDS because she was working in that field, but rather because she made discoveries in her own field that were relevant to a condition she herself suffers. its good to have people like that batting on your side though.

While I agree that many major medical findings have been made by thinking outside the box or alternatively and that often these new ideas are resisted by the prevailing medical fraternity, my point was merely to keep an open mind because there are alternative view points on all these things.

CCSVI - sure there are many MS patients who claim benefit. Ive never said that there is absolutely no way CCSVI is relevant to EDS POTS. Ive just raised an alternative view that does not necessarily support the argument that it does.

As for medical research; for some its just a job, for others its a passion and while they arent suffering the condition, some see the patients every day who are and are heavily effected by that fact. But they have to fight for funding. they have to sell their research ideas to their employers and then their employers have to be convinced it will go somewhere and will get published in a peer-reviewed journal. But its exciting that POTS is regularly published in highly regarded journals like Hypertension and Circulation and the New England Journal of Medicine - where these articles are stringently reviewed and critequed before publishing to ensure the results are testable and reproducable.

Massive developments have been made in the last ten years in POTS and dysautonomia. As an example a paper published in 2011 basically demonstrated the cause of NCS in two distinct subgroups and suggested possible new treatment options.. This was a massive but largely ignored development.

Papers on Droxydopa - again a massive development that didnt seem to warrant the same attention as other stuff.

[ramakentesh]

Thing is not all EDS people have POTS. So, we can't say that the EDS is causing the POTS. Because then all EDS people would have POTS ---and they don't. That's assuming again, Rama.

Issie

True and a good response. But to suggest the EDS is NOT causing POTS is a great assumption if you apply Occam's razor.

[issie]

Ha! So true. Chances are that it greatly contributes to it. But, . .. . .there could be more then one reason. I personally think that there may be multiple reasons for POTS. This thread is just another idea that a doctor himself feels is relevant and possible and I'm passing on information. If this helps ----YAYYYYYY! I don't see that it can hurt anything for those who test positive.

I got a PM last night and someone else has tested positive and it was not with Dr. Fry but another doctor on the other side of the States. Her husband was tested and he does not have it, but she does. So, not everyone has this protozoa. But, it's interesting that some of us with POTS do and by the way this person also has EDS. So, I'm wondering if there is some type of connection with that too. It will be interesting to see if more people with EDS and POTS test positive for this. Hopefully, she will chime in here later when she gets the diet and herbals going.

I don't know if the girl in the UK has EDS or not. I know she isn't doing the diet properly and is not getting the desired results. She is on another forum. But, I think one of our members here is in contact with her. So, that would be interesting to know.

Issie

[ramakentesh]

its kind of a creepy thought though having protozoa... Dont you get that kinda thing from eating one too many tacos off the beach in oaxaca?

[issie]

Ha! Yeah, it's creepy . . . . ----THE PARASITES WITHIN!!!! Way creepy! Ugh!

I wish I was in Mexico, eating a taco and that's how it was gotten. Those would be intestinal and give you a good case of the trots. Ha! It would be easier to get rid of those rather then something in the blood.

Issie

[Zap]

I've done a number of regimens over the years - but one thing I did notice was that anytime I tried to do a parasite cleanse, I felt a whole lot better than normal. The effects wore off after a bit, but it is rather interesting to say the least. My digestive function regularized a whole lot, too.

The formula I personally used had a lot of supportive herbs, so I could never tell if that was the reason or if it was actually doing something to reduce one or more types of unwanted guests. I have tried a number of these herbs over time, but never had the same results.....

[Katybug]

I think if there is is merit to the protozoa contributing to the POTS or even the EDS, it has to do with having a predisposition to these syndromes and the protozoa being the last straw that pushes us over the edge. I had no issues with POTS, MCAD, EDS until I tested positive for a Lyme co-infection, babesia, and its been all downhill since then.

[Katybug]

Coincidentally, babesia is another protozoal infection (and yes, its creepy to hear they are wiggling around inside of you). Even though I have been treated with long term antibiotics and anti-malarial meds, I still get a rash that is very specifically related to babesia infection but since I don't test positive for it, no more meds. But the docs can't explain the reticulated rash that I get.

[issie]

Katie,

I wonder if this protozoa is the issue. I'm not sure how many docs actually check for this type. I know my doc does some sort of a stain and then he does DNA test to see the type that it is. Maybe, something like a treatment with the herbals might keep things at bay ---if there is still some sort of activity.

Who knows what comes first. I'm thinking that the EDS does and then maybe there is a snowball effect that happens from there. And like you say ---maybe too much is stacked against us and there is a "straw that breaks the camel's back". Then, BAM - that's all we can take. Although, I still think, somehow, the polio vaccine I took, when I was very young, has something to do with what my issues are.

Issie

[Angela]

3rd world countries do not have the dyso issues that westernized countries have - proven fact- and they mainly eat rice beans and veggies. does this have to do with diet and what is in the food we "westernized" people eat or does it have to do with the climate and race ( I venture not because my big sis is half african american and was raised in a semiwarm climate, yet has m.s. - major misconception) or they do not have dr.'s to properly dx.

[issie]

I think diet plays a big role. I've often thought that maybe it does with EDS too. (I'm speculating here ---no one get in a tiff about this.) The one thing that we learn from parents, and they learn from their parents and then we teach it to our kids ---is diet. Could it be that we have turned on some inferior, inherited genes with our diet. What would happen if we could turn it off (epigenetics)? What if all it took was a diet change?

I'm thinking that looking into diet and making changes ---even though hard ----may make a big difference. It has been proven to make a difference in autoimmune disease (like MS). One of the first things that people are told to do is get off of dairy. If you take some of the other races --like Asians ---the older people who adhere to their original diet of veggies and rice usually, live long more healthy lives. With each generation that passes and more westernized foods come into the diet ---the sicker people seem to get.

Nothing about a diet change is easy. And getting ones head around the idea is even harder. You have to be in the right place and have the right mind set to even attempt something like this. My husband asked me why now ---why not 2 years ago. ( He has been thinking diet was an issue for years now.) I told him for one, I had to be ready for the changes and for some reason I wasn't then. And, also there had to be a REASON for the change, something to make me commit to it. (You'd think POTS, EDS and MCAS would be enough of a reason.) Well, this positive test ---was enough of a reason. I have a doctor telling me of the success he has seen with his patients that are "STRICT" with this. I have more issues going on with me - then I care to elaborate on ---something has to change. This is something only "I" have control of. This is something "I" can do. This is something that might make a huge change in my life and maybe give me the rest of my life in a better place. I intend to try this to the best of my ability. I need you guys supporting me. I'm not always a super woman. I have times of weakness and lack of strength to keep pushing. I'm glad some of you - see some merit in this and some of you are determined as I am to try this. I hope that we can compare notes, exchange recipes and encourage one another to not give up and keep going. And, hopefully, we will be posting on here that it is making a difference.

Issie

[kitt]

You go girl..You can do this Issie.

Changed my diet years ago, and as you mentioned our diet is in our control. Completely.

After a few (or many months) of changing diet what feels like denial becomes a powerful sense of knowing that 'food, eating, diet and health' are all connected to a powerful sense of well being when we FOCUS on it.

After a year or two I could taste organic fruits and veges from non organic and became a connoisseur of 'good' whole foods, and the most important thing I've done in terms of diet...Ever was giving up sugar and all sugar substitutes. Six years ago I cut all sugar out of my diet (cold turkey) and it's a powerful thing. I don't mean using 'diet' sugar products as a substitute or 'natural' forms of sugar...ALL sugars, sugar substitutes and the neuro-toxic diet sugars! Yep neuro-toxic. Lots of research on this, google the different forms of diet sugars.

Here's just one example of natural sugar being toxic as aired on '60 Minutes' http://www.cbsnews.com/8301-504803_162-57407203-10391709/sugar-and-kids-the-toxic-truth/

I was a vegetarian for 15 years and didn't eat beef, chicken or dairy. I didn't feel better and didn't feel worse.

Since going 'sugar free' I've felt a profound impact. No cheating and no wanting to cheat after the first few months.

An easy start for people who like to 'ease in' to a new diet change is to get rid of all processed foods. If it comes in a box or a bag, it's processed. If the list of ingredients is long, but it back on the shelf.

Eat Fresh!

Whatever diet you choose, keep it simple. Try something new. Challenge yourself. Fat free, sugar free, gluten free, vegetarian or vegan. If you're craving something (dairy maybe) it means you might be 'sensitive to it' not necessarily allergic but it could be causing some immune problems. Whatever you 'think' might be an issue, try giving it up, or easing off it, and keep a food journal.

Surprise yourself. This is an amazing opportunity to take your health in hand without a doctor.

So do what you need to do but please consider your diet as a source of health and also as a way to improve your health and mood.

Good luck and Happy Holidays!

[issie]

Thanks Kitt for your support!

I think your advice about sugar is a good one. Many times when one lowers fat - they increase sugar. It is good to keep in mind not to do that. I use very little sugar and if I do use something it is stevia. But many of the lowfat options of things have more sugar in it. I'm trying to use more whole foods and very little processed foods. So, it should prove to be a very healthy diet.

Issie

[Angela]

love stevia! they have it at sprouts and you can get all kinds of flavors too:)

[GypsySoulNicole]

Okay Issie, I'm finally chiming in! Let me start by stating, I am by no means on the same level playing field as Rama, Issie and most of the rediculously intelligent people who post on this forum! I do feel, however that I have gained a fast forward imaginary medical degree just by googling every 4th or 5th word ya'll post! I am at a place with my dysautonomia, pots, eds, mast cell and whatever the heck else labels they have given me where I am to wiped out to debate how this disease is ripping my body apart. I don't even care anymore. I just want to get better. I am even willing to take any placebo pill, juice what have you as long as it works.

I did not get to go to my Vanderbilt appointment in November after being dropped by my insurance company back in July. I was so upset, but if I wouldn't have lost insurance I would have never started exploring "alternative" ideas. With all that being said, I finally came to a place where I was ready to listen to some of the suggestions I blew off early on because I was so focused on doing what my cardiologist and neuro were willing to try from the latest research. Last week I had an appointment with an Amish doctor in a rural office here in Indiana. Our pastor had urged me to go after he had been diagnosed as terminally ill at different hospitals, he recovered in about 2 weeks after going to this Amish Doctor. (No, I don't know what they said he had what he actually had etc). I figured I have nothing to lose, so I booked an appointment.

The appointment started out with a live blood analysis with darkfield microscopy. Now, I have since googled this and of course, it is controversial because it is not fda approved and most stuff online says the "dr's" doing this are selling snake oil etc. (I'll get to that part later). I remind you, I am just an average farm girl, but I don't understand why looking at live blood is not approved? My common since tells me that's crazy because when my blood is in my body it is alive, makes since to look at what it's doing in that state. Anyway, the microscope had a tv hooked up to it so we could see the blood cells and what was going on. The humble Amish man explained all the stuff on the screen (red blood cells, white blood cells, sugars, etc.). Now, this was my first look at blood under a microscope, (I try to avoid seeing blood in any state so I don't pass out) so I was a little skeptical thinking "Is this what everyone's blood looks like" until it was my husbands turn and his cells were so different, like, helathy different. With my no medical degree mind I could see clear as day my red blood cells were not round, they did not have a pretty outline and there were these stringy worm like things twirling around. My white blood cell count was almost non existent. Some of my red blood cells looked like swiss cheese. I asked what those dots or holes were and he explained that the wormy things were the spirochetes (the borrelia burgdorferi spirochete causes lymes) and that spirochetes "bored" holes through cells, connective tissue etc. I had the heeby jeebies watching these little dudes (now referred to as my "bugs") wiggle in and around that drop of blood we were viewing when I started to think of the magnitude these things could be doing everywhere I had blood!

The Doc made notes while he was observing the blood and he quoted research/researchers and write stuff down for me to look into on my own. He brought up Dr. Fry and FL1953 and I about fell out of the chair. I had read Issie's first post on this topic the night before my appointment but didn't think much of it until he brought it up and the "bugs" were staring me down. He explained that just like the flu virus changes so do the spirochetes of Lymes, and co infections like babesia and that they could affect people differently. Evidentally, Dysautonomia is a symptom of late stage lyme. Again, controversial, I know. But I suppose now I am ready to hear it since I have seen the damage with my own eyes.

Without knowing anything but our first and last names he pinpointed symptoms when looking at our blood. My husbands cells looked totally different than mine and somehow the Amish man knew to ask if my husband had seizures. We were shocked because my husband is healthy except for epilepsy he acquired in adulthood causing grand mal seizures.

Now, for the money part. It was free. They do have a store attached to the office where they carry all sorts of natural products including, there own herbal concoctions, however, he wrote down what he recommended and told me I could research everything he gave me and I could find the products online, at a natural store or I could order from there catalog if I didn't want to drive all the way back. (They do not have a website since they are Amish.)

I highly recommend watching the documentary "Under Our Skin", it is available on Netflix instant and some other outlets for free. It does a great job of explaining why there is so much controversy. It also shows pictures in between clips of the spirochetes under microscope including darkfield like I saw them. There is so much controversy on how lymes is spread, I didn't even know about. I think that if I would have just had a positive western blot test I may be more skeptical but seeing them live in front of my eyes let me know they are there and I don't care how they got there. Right now, it does not matter if it was a tick, mosquito, blood transfusion or a lyme fairy over my house. I am not concerned that I never had a Bulls eye rash. I don't know if I was more susceptible to "bugs" because I have EDS or if the "bugs" bored holes through my connective tissue and caused some sort of a DNA change. I, like issie, have had symptoms of dysautonomia since I was little but have taken a beaten in the past year or two. For the first time, I have been reading about Lymes and it's coinfections and it has connected the dots on how I am affected more on one side of my body, how one eye droops and my hand locks up and raynaud's takes over. My truth is, I'm sick, I want to get better, I am tired of waiting for the latest research on one of my symptoms that might offer a new and improved medication to mask that symptom. I want fixed. I don't want a bandaid over a splinter, I want the darn thing pulled out. I don't know when diet and natural remedies became controversial, I suppose it was around the same time in medical research that the wolf started guarding the sheep pin and big pharma started funding research. I know that Mama always said you are what you eat, though. I'm willing to give this a try, for those who want to know what was recommended, what I'm doing with it and how it all works out, pm me. Rama, Issie and all of you who post on this forum, don't stop! Your ideas, your searching, your debating is what keeps so many hopeful! I am grateful to be included in a diagnosis group with people who have so much fight in them they are constantly thinking, learning and posting. If it wasn't for you I would have stopped at the cardiologist's "You have Dysautonomia, there's not a lot we can do for you."

[issie]

Thanks Nicole, for chiming in. I knew you would when you got ready.

I find it interesting that there are some of us with EDS, HyperPOTS and MCAS showing up with protozoa and co-infections. What the significance and tie in is ---we will find out. I'm like you, how ever I got this ---I want rid of it. If it takes a strict diet and some herbs ---then so be it. It's better then the things that meds and all their side effects do. Maybe, we will get to the root cause, at the very least a possible big part of the problem.

Keep us posted on your progress Nicole with how you feel, what the diet is doing and how the herbs are affecting you. I'm in the die off phase and it is not very fun ---swollen lymph glands, headache and tiredness. Generally, feeling pretty ucky. But, I knew this was expected and would happen ---so, I look at it as a positive. Hang In There ---we're going to get better.

Issie

[GypsySoulNicole]

This summer we put in a pool for the kids, while researching a bbb method of chemistry to maintain the pool without buying into pool chemicals I felt like I started understanding my body and what was happening with me so much better. Let me explain. The pool needed to be kept at a ph of around 7.4, if the pool got to acidic, It discipated the bleach so it didn't kill the bacteria in the water. After waking up to a green pool one day I had to start over. I couldn't just dump more stuff in the pool because my filter was disgusting. This is where I've decided to start my process of healing. No since in starting the diet (dumping new stuff in the pool) until I clean the filters. So, I am starting with a natural kidney cleanse followed by a liver detox, possibly a coffee enema as used in the Gerson therapy. I will then start a juicing alkaline cleanse, again, similar to Gerson's therapy. I have decided to go with a natural microbial defense called Samento. Why not long term antibiotics? 1. Insurance dropped me 2. An acute case of C-diff hospitalized me in 2006 and that is an outcome I never wish to see again and 3. There is no research on whether lymes borrelia is a "super bug" or not which could explain why a simple run on antibiotics does not seem to work. Family concerned about me going on a juice cleanse diet have baffled me. No one cared when I was on a diet soda chugging nutty bar eating diet. My diet as it stands now is taking in more toxins than it is eliminating between aspartame, msgs and who knows what else are creating a perfect acidic environment for all sorts of protozoas, bacteria to hang out in.

Me seeing the spirochetes in my blood was a wake up call for me. The possibility of Lymes or coinfections didn't seem obvious to me. I was stuck on EDS, Mast Cell research. The spirochetes boring holes in cells while I watched made me realize they are nasty. I believe it is them (now referred to as bugs) that are boring holes in connective tissue making my joints hurt, I believe the bugs are literally on my nerves causing the neuropathy. I believe they along with their parasetic buddies are wreaking havoc in my guts, messing with the vagus nerve making my heart go all over the place. I believe they have infested my lymph nodes stopping my bodies ability to recognize them as an enemy and turning on my positive ana. This has been the first thing that has connected all the dots for me. I don't how it works, but I am finally at a point where I'm willing to give it a try. My next thought on an organic vegan diet was the expense. I then remembered the phone call to Mayo where they wanted around $5,000 up front for a visit since I was a self pay. I was willing to pay if it meant me getting better. I then decided I would spend that on a masticating juicer and organic produce for a year. I have been reading http://lymemd.blogspot.com/ and other chronic lyme info and can't believe I blew the possibility off because I thought, surely my doctors would have thought of that. I also found this article on Ccsvi and the xmrv virus interesting http://www.seranogroup.org/index.php/site/entry/good_medical_news._now_what/ I think seeing the live blood analysis pulled some fog off my brain to look again at what's been staring me in the face.

[Katybug]

Nichole,

In case you haven't found it yet, ILADS.org is also a great website for chronic Lyme (and all Lyme info). Also, can you tell me where the Amish doc is located? I'm wondering if he's close enough to me for a visit since Dr Frye is too far.

[GypsySoulNicole]

Thanks Katybug, I'll check Ilads out. I've been reading an article on New ideas about cause spread of lyme at http://www.samento.com.ec/sciencelib/4lyme/Townsendhowens.html the samento website has some interesting articles on the subject. The Amish office is in northern Indiana. I can pm you the info if this is closer for you.

[Katybug]

Thanks bit not close enough. I was hoping it might be in the Amish community in Lancaster, PA. I've been down the Lyme/coinfection rode since 2007. It is difficult to get treatment when mainstream medicine refuses to see sense about chronic infection. I was treated with antibiotics for a little over a year but not until I was in stage 4 infection. I believe that it won't ever be gone from my body but of course tests show I'm negative. I'll have to see if I can dig up someone around Baltimore that does this live blood microscopy. I would like to see for myself what my blood looks like.

I'll have to take a look at your links. I think ILADS was one of the root organizations for a lot of these others.

[Angela]

ha ha I am an Indiana girl 2 so I know how incredibly hard it is to find a doc out there. I moved to AZ several years ago. Regarding the FL1953, I am not sure if this girl is on dinet or not but she has tested for the protozoa as well.........

http://wheredidigetthislemon.blogspot.com/2012/10/a-new-freedom.html

also, your doc can send in the bloodwork to Fry's lab if you live far away from what I understand.