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An Alternative View Of Why Some Of Us Are Hard To Treat


ramakentesh

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I ran across this thread tonight and thought others might enjoy it.

I like how Rama's mind works and appreciate his insights.

Hate to say it - but one of my comfort drinks is a........(sorry Dizzy)....... Dr. Pepper. I don't do it often - but, if I need a pick-me-up - it's my go to thing. :) Makes me happy!

Issie

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Lol

.. That's funny .. No offense, but I have a problem with the way rama thinks. Or anyone who thinks sodas

or garbage food is ok.

OOooh but I used to think EXACTLY the same way. I justified anything I wanted because it

was LESS toxic than something else. Heck if the pkg said healthy I bought it. ; ) ... I was thin, healthy and

successful in my career so I thought / knew I was right.

I chalk my behavoir up to addiction on a chemical level. Between gluten, casein, sugar and whatever

other addictive substances were in my foods, I couldn't stop myself from consuming these. Now I know

I was wrong. Diet does matter.

Again, no offense, but over the last few years I've noticed that I don't see logic being used by

most medical or scientifically trained people. I honestly always thought these people were geniuses. I really enjoy watching a certain doctor on tv, and although he's on the right track, he's is the perfect example of this. He promotes whatever

latest one pill wonder based on the latest study. He hasn't figure out that popping a pill isn't the solution.

You can't get what you need from pills. He lost a lot of my respect when he promoted gastric bypass surgery instead of just diet and exercise.

Dr terry wahls explains this. As do other functional or integrative doctors.

It's interesting for me to watch highly

intelligent people figure out that their education / training failed them. I just wonder how often people who are great at memorizing data have the

ability to analyze the data they're memorizing. Our education system only recognizes those with the ability to memorize data, NOT those who reject the data as nonsense.

Tc .. D

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Well, Dizzy - I agree with you on the diet thing. I'm glutten/grain free, and mostly dairy free (little cream and little butter) and try to be totally sugar free (except for my maybe 1 Dr. Pepper every two months LOL :) (I knew you wouldn't like that one, and I don't think it's okay - just a weakness of mine - Ha!Ha!) What I did like about this thread was not where it went in the end - but, his thoughts in the begining of the thread.

I do believe diet is one of the most important things we can do for ourselves. However, I believe in supplements too. As for the doctor on TV that you're talking about - I take a little issues with him - because he does endorse supplements as a blanket for everyone - I don't agree with that sort of thinking. You have to know a persons entire health history BEFORE you can say take this it will be good for you. Because, not every supplement is good for everyone. Even when you are talking about vitamins and minerals - what our bodies are made up of. Then you get more serious when you get into herbs - because, they are potent and powerful just like medicines. You really got to be careful with them. Most people are not tuned into their bodies enough to know when something isn't good for them and if you're not - you can create an issue for yourself. (Even if you are tuned into your body - sometimes you can't figure out if something is a problem. Like me recently with licorice tea - still don't know if that was what was contributing to my edema but either that or the med was - cause I'm losing all that edema and it's only been a few days. I'll figure it out though - by adding one back at a time and seeing what happens.)

I'll have to look up that Dr. you're mentioning - never seen her info.

Issie

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Definitely with you, Issie, on the "hmm, not sure which, drop both and add one back at a time." For me I really prefer to have some objective measures (or strict subjective ones) to see how meds are doing. Case in point... I decided this afternoon that Lyrica is not working for me and that I need to drop it down to the minimum dosage (since it did improve my sleep at that level) rather than keep it up at 300mg when it's not doing anything. Why did I decide this? Because I looked at strict subjective measures (my personal joint pain scale, which uses external behaviors rather than internal levels) and less strict ones (desire for various aids) using data from several weeks with no other med changes. At this point I'm comfy saying that the stuff isn't working for my joint pain. We were pretty sure it wasn't working back at 200mg, but decided to try this so we can say for certain it's not working.

(I also agree with you that many folks (not the ones here!) don't pay enough attention to their bodies (although that can be a problem, it's something they address in CBT for chronic illness sometimes) and so can't give good data on what works at any given point. and also with you and rama that things need to be personalized as much as possible)

Herbal medicine always makes me nervous because of the natural variation of compound levels in different plant samples (varies so much by the time of day, season, climactic conditions, etc), which makes it hard to regulate dosage and figure out what really is working and what the ideal dose is. (I might be biased towards worrying about the variance, since I research plant compounds) But folks seem to figure it out much of the time, as long as they take it slow and individualized. Definitely not in favor of universal supplements for all!

And, Dizzy, although I agree with you that in many cases you can't just pop a pill to solve a problem, I would sure hate to deal with my central nervous system without them, and sometimes they really are the right solution for many folks. Sadly can't fix my amygdala's misregulation without meds, but I do envy the folks that can :^)

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Perhaps there is a situation where one treatment works for a while for one - say caffeine gets you out of the dizziness because it helps your sympathetic system compensate for the other abnormalities, but then too much caffeine might amp up the sympathetic symptoms too much. In other words push the balance too far the other way because we already have sympathetic excess?

On the other side of the coin if we turn down the sympathetic system too much do we result in the opposute and increased dizziness becauyse are stopping our sympathetic system from being able to compensate?

Might we be better off single dosing on treatments depending on where we are on the spectrum? something to help when dizzy, another to help when we are too amped up sympathetically?

I'm finding this to be very true in my case. I supressed the sympathetic system with the clonidine and that supressed my bodies abilities to vasoconstrict as well and caused more pooling and edema. But, still even though I haven't been on it for about 4 days now - some of my symptoms have improved despite being off of it. I'm not having the hourly surges and horrible tacky that I had before I took the med. Things have leveled off better than they were. I am having more tacky and more bp swings - not near as level as when I was on the med - but, it seems it helped to stabilize me better - even being off of it for these days. I'm thinking it is something that I want to cycle on and off of. Like really paying attention to my symptoms - if my sympathetic system starts going really bad wonky again - go back on the clonidine and calm things down. Even though that may prevent the needed constriction of my veins and might be causing more edema and pooling - for me -- it's worth it to have the relief that the med brings with the hyper symptoms. But, despite having said this ---I'm still having some pretty bad edema and don't think the medicine or the licorice tea were completely to blame for it. It may have contributed to it --but, isn't the only problem. (The EDS veins and bad circulatory system - had leg vein surgery when I was 26 - so know that is an issue.)

Rama, I think you're right on with your late night pondering. Maybe, we will have to take something for some of our issues at one time and then do something totally different at another time. That makes sense - when you think about how medicines might work for a few weeks and then seem to back fire on us. Maybe, then we've had enough of it for then and taking a break would be the thing to do. Then we may need something totally different. It's figuring out the balance and what we need to do at a given time.

Issie

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Rama, calling your theory the Double edge sword theory :) I agree with it 100% that's why I strongly disagree with the general blanket of treatments most doctors are suggesting for me. They should be doing all day studies to watch our bodies scales all day testing meds on us and monitoring or scales. I learned so much by researching if i may have pulmonary hypetension. When a dr sticks a catheter in a patients heart and pulm artery they test meds on the spot and test pressure levels so they'll know how to treat, that had lead to saving lives.

our scales are so delicate they need to measured all day and in every way. Our adrenals, vitamin levels, flow levels, cell activity, nerve activity. Has to be expensive but it will lead to the best treatment. wish i had so wiggle money so i can get a whole department working on me :)

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Rich, I think we all wish we had some "wiggle" money to have lots of test done and maybe get to the bottom of our dysfunctions. Unfortunately, most of us don't. So, despite having wishful thinking that we could know without a doubt what our bodies are doing at any given time or position (etc.) it's just not possible for us to know these things. Even if we did know them on any one given day - that would change tomorrow. So, about the best we can do is try some of these treatments that are offered to us and decide for ourselves if they are worth pursuing and continuing. Or if it's an alternative thing - herbs, vitamins, meds, acupuncture etc. if that is good for us. What may work one day - won't work the next. So, we really have to tune into our bodies and pay attention. It's up to us to be our own health advocate and our own health care taker. We are not going to have a doctor tell us on a daily basis what to do. We may have to figure that one out by trial and error. And I guarantee there is more error than not. But, if we don't do anything at all ----then nothing changes and we stay the same. So, I know you want concrete facts and proof that something is the right thing for you -but, with this illness that just isn't possible - because every single day and possibly every single moment may change and be different.

I learned all this the hard way - been working on this project for over 30 years now. Still don't have the magic wand or all the answers. Still trying to find my purple band-aid.

Issie

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Well said issie. And this is why I think diet is so important. Ideally, when we eat nutritious foods our

bodies take the nutrients and uses them as needed. Taking these nutrients in pill form can cause an

imbalance in other nutrients so I try to stick with those supplements that I know my body needs.

A balanced diet won't do this. We still need to avoid foods we're intolerant

of tho.

Gut damage, nutrition or enzyme or amino or peptide deficiencies, parasites, heavy metals and bacteria can interfere with this process tho. And that's what I'm working on now.

My previous labs for parasites was neg but I just learned these labs aren't perfect. Metametrix looks for parasite dna tho and my latest was pos. Eeeew .. Lol ..

I was positive for high mercury a couple of years ago too so I'll be looking at that too. All I know so far is that Mercury pulls magnesium so I was told to supplement magnesium.

Tc. D

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Thanks Dizzy. I do believe a good diet is important - but, don't think we can do it with diet alone. I was just reading an article on Jack LaLane - one of the healthiest eaters known. The article was talking about his supplement routine or lack of and the fact that possibly if he had been using Vitamin K and CQ10 he wouldn't have had valve issues with calcification. If diet alone would solve some of these problems - then he would maybe not have had to have the replacement valve and then get pneumonia and died. So, I do believe that supplements are also a necessary thing. Our bodies are just too imperfect and dysfunctional to rely solely on foods. Although, I do agree that "IF" our bodies were more functional diet might would correct many things - but, with our dysfunction I think both are necessary.

I'm finding magnesium to be good for me too. Many are being helped with it. It will however, lower your bp.

Issie

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It's finding which supplements we need that so darn tricky ! For example - Because I have an

oxalate problem, I was told to take b6. The low dose, up to 125 mg, didn't appear to help. So I

tried 250 mg and it worked great. This along with mag twice a day that I'd been taking for several months.

. Suddenly I could eat

more foods that had medium - high oxalates without being in pain. I did this for several months.

Life was good ...

I didn't respond badly at all to b6 until I started

juicing last month and then it kept me up all nite. I tried 250 mg b6 last week without juicing and it did the same.

Next trial will be a lower dose. In my defense, i was feeling puny from the stone I was passing, so I was trying to break it up using b6. Lol ..

Without going any further, lol, let me just say, it's a pain figuring out how much and when to use this ..

I got insomnia from juicing for a few weeks straight too so I stopped that. I actually juiced again today but

only drank 12 oz. It felt great ... Now I just hope I can sleep tonight.

Tc .. D

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Dizzy, of all the B's, B6 is the one you really have to be careful with. Why? Because it can cause nerve damage - like neuropathy. It is better to use it in a B-complex - unless, doctor tells you different. If you use one B by itself, you should ALWAYS use a B-complex. You will imbalance your B's and cause yourself more problems.

Hope you sleep tonight too.

Issie

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Thanks. I'm such a pain. Lol. I can't take a multi b because I get extreme bladder pain from b2.

I tried multi b's and then took each b by itself to determine which one I was reacting too.

I just remembered that I found a reason for that late last nite and it was either due to a bacteria or fungus or

parsite that feeds off riboflavin. I "think". Hopefully, I didn't dream that .. Lol .. Tc .. D

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You might try the B's again. The one I use is a time released one by Nature Made and it doesn't make me sick. Some of them do. You're right, there is a lot of trial and error in figuring out supplements. You really have to know what you're doing and listen to your body.

Issie

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I've read similiar things - also there is an idea that we need more minerals. One company is selling dirt - as a supplement. Yeah, dirt - they say you need the minerals and bacteria in it to be healthy. I know here in the States, doctors are just now figuring out that we shouldn't use antibiotic soaps because it will make you resistant to antibiotics when we need them to work. So, many people are becoming too sterile and it's creating more illness. Then our bodies can't fight off things when it needs to.

Issie

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  • 4 weeks later...

I recently got Greg Page to say his issues and treatments. He said he was low blood volume and low salt, so he just salt loaded and took florinef off and on. I'm trying to get more info out of him.. :)

But back to Rama's orginal theory, I've reread it and it almost points to not total autonomic dysfunction but sympothetic dysfunctin basically.. but you do mention things in your theory happening in the stomach which are part of the Enteric system of the ANS. This system is very complex and send messages and controls neuro transmitters similiar to the brain's. Thirdly there is a parasympathetic, which has some role in urination and digestion among many others and uses tons of ACh for control.

Is they dysfuction on one system or all three ANS systems and how do you tell?

If its mostly sympothetic than can't we measure our nor and adrenaline and use these inhibitors when necessary?

Inhibitors of norepinephrine release

Substance[45] Receptor[45]

5-HT 5-HT receptor

acetylcholine muscarinic receptor

adenosine P1 receptor

ATP P2 receptor

dopamine D2 receptor

enkephalin δ receptor

histamine H2 receptor

norepinephrine (itself)/epinephrine α2 receptor

PGE EP receptor

Stimulators of norepinephrine release

Substance[45] Receptor[45]

adrenaline β2 receptor

angiotensin II AT1 receptor

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  • 9 months later...

Fwiw ... I've noticed that in my celiac support group meetings, most people have no idea what the

terminology is for ataxia, dysautonomia, etc. And yet when I show it to them, many can relate or say that they

have family members who have this.

Very long bow im afraid - subjective symptoms are a long way from measurable clinical diagnosis. I have also noticed that people that suffer Ank Spond seem to report symptoms identical to POTS and autonomic disfunction - perhaps its just a result of autoimmunity in general? If you ask someone whether they have an illness and they say that they have doesnt really equate to that being a fact or having any scientific or credibile evidece to support it.

I developed pots when i got ank spond. I know there is a genetic predisposition to ank spond although no one else in my family has it. Do I think my diet and behaviours pre illness increased the likelihood that i would contract the illness? Almost definately. I ate a lot of crap and I realise that now. I drank a lot of alcohol at uni but so did all my friends and some had far worse diets than I did. Yet im the only sick one.

I think its all about genetic and epigenetic predisposition and then perhaps triggers in your life (diet, stress, early infections, other factors) that increase the chance of the illness coming on. Ank Spond is a good example - 90% of patients have HLA-b27 but only a small % of people with that gene develop ank spond.

I always say it and ill say it again. If you dont keep an open mind about the causes of illness your doing your self a disservice. its good to have a theory but rather than exclusively looking for only those facts that support it you need to apply science to it and test it at every chance and dont be afraid to doubt it.

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and bahhh, facts.science. sounds like hyper species are on another planet, BTW, in case they didn't make it clear, salt loading if u do shoud be sea salt, not table salt, just cuz i saw too many people dumping iodonized crap on their food cuz they thought the had to "salt load".

LOL if this posted 2x. don't know why

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LOL - I keep a very open mind. My point there is still valid to Dr Fry's example although the content of my original post is old and I dont agree with it now.

Are you keeping an open mind about Dr Fry's research? Are you questioning it and subjecting it to scientific rigour? Are you keeping an open mind about the fact that it could be a complete flawed theory? Do you ever wonder why these studies dont get published? Can you explain how these protozoa have miraculously remained undetected until recently and somehow manage to hang around only in the veins of a patient who already has EDS and somehow cause POTS (even though POTS causes measurably abnormalities in more locations than just veins - try small fibres, cardiac sympathetic transporters, etc

You often quote the example of the parasite that was found to cause stomach ulcers. But that research was published in reputable journals and the research was conducted by highly regarded and qualified researchers. It was peer reviewed and published and then ignored by the medical establishment but that is the difference - it was subject to peer review in reputable journals.

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Dr. Fry does not suggest that these protozoa ====CAUSES==== POTS. He has however suggested that it may could explain some of the issues with blood flow to the brain. (It's not Dr. Fry's agenda to look solely at POTS and become a POTS doctor and delve into the science so intently to determine if this is or isn't the "cause" of POTS. But, if it helps us and we get some sort of a life back with the diet changes and supplements and antibiotics ---hooray for us.) If you are thinking that "I" think POTS is "caused" by this protozoa ---I'm not sure that is the case. I do however --think that it can most definitely contribute to some of the issues that we have in regards to POTS. Not everyone that test positive for these protozoa have POTS or EDS - yet they do test positive for these protozoa. I have seen some people walk into that office that most definitely do not have either of these. Yet they are looking for answers to not feeling well. Dr. Fry first uses local labs to test for Lyme and co-infections and then depending on those results - will continue on with the protozoa testing ---if YOU ask for it. He by no means is trying to push his ideas on anyone. I admire that he continues on with his research and speeches despite the adversity that he encounters and the criticism that he endures from skeptics. He obviously is not in it for the money. Because he is not overly expensive and that doesn't seem to be his goal. But, he is trying to help others and is very passionate about what he has discovered and wants to help others by getting the word out about this.

I was in there one day and an entire family from another country was in there to be tested. I guess the mother and father both knew they had the protozoa and were there to get their three older children tested. One of the boys was really skeptical and was very verbal about it. When he left, he was no longer a skeptic - but on board with changing his diet and saying he was all for the diet change. He at that point had no idea if he had the infection or not ---but, saw the benefit of the diet change. When I look at the diet alone ---I can see how it could be of benefit for whatever illness a person may have.

The only thing about the diet that is really hard ----is the low fat part. IF ---these protozoa wasn't known to be protected by fat ---this would be one thing that I would have more of. (But, I've messed up with the amount of fat I've had enough times to know - that it really does make a difference with how I feel. It makes me feel horrible.) I do think we need a certain amount of fat (the right kinds) for well being. That is the hardest part of being this sort of a vegan. It's not hard to eat the right foods and be healthy with it ---but, it is hard to keep the fat content down. (I have added a supplement of an algae source of DHA to make sure I have the essential fatty acids that I need.)

I think it's just a matter of time before Dr. Fry will publish his findings. I happen to know he is doing a study right now and it will be interesting to see what it determines. He also is doing seminars all over the world (last week he was in Poland) and has given speeches to many doctors. There is a process to what must be done to get backing and for all the information to be compiled for peer review. It's just a matter of time. All of us that go to him and are doing what is suggested are not at all ignorant of the fact that this is new territory and in a sense we are in an experiment. We don't know what the outcome of it will be or what the benefits will be in regards to POTS. But, there are some of us that are willingly allowing ourselves to be in this experiment and seeing some benefits from it, already. We choose to follow the course and see where it takes us. We may find that it's not all we hope for it to be ----or on the flip side ----it might give us what we are searching for ----more quality of life! So far, I'm finding more positives then negatives ----so time will tell all.

Issie

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