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

[ramakentesh]

Post deleted.

[issie]

Yeah, I think that makes sense. But, most people are not tuned in enough to realize what's what and don't have a clue what to do at which point. I also think that we probably have liver issues and over time the meds build up in our systems and instead of eliminating them properly through either the liver or the kidneys - we re-circulate them and they continue to over-build-up in our system and that's why we get the excess amount symptoms.

Issie

[Dizzysillyak]

Um, and maybe it's because some of us are still tryng to drink cokes ? Lol

I had a funny experience at a hfs once. A teenager came racing in with her mother. They'd just seen the

teenagers doctor some some reason that I can't remember. But, they both said that her doctor had told them

that she was allergic to the sun and they were looking for a supplement to help her.

This teenager was holding an open coke container.

The manager of the store rolled her eyes, reached over and took the can right out of her hand and said .. Why not

start with getting rid of this poison ? Then proceeded to explain how unlikely it was for a human

being to be allergic to the sun ..

The first time I met this manager was after my genius doctor told me to eat potato chips for my oi. He

was serious .. So I went in looking for chips with the most salt. Duh ..

Needless to say, hfs workers are seeing just how ridiculous our medical professionals are.

Tc ..d

[sue1234]

Dizzy, I do agree to get rid of the Coke. But, people with Porphyria are literally almost allergic to the sun. I was tested for it as I cannot get in the sun without beginning to feel like someone put an iron on my skin. Not saying she has porphyria, but there are some pretty weird diseases out there!

Rama, your first two theories sound just like what I was writing last night on the person's thread about "reactive hypoglycemia". In essence she wanted to know if taking a beta blocker would calm the symptoms of the adrenaline rush from low blood sugar. I mentioned that that counterregulatory mechanism(the adrenaline release) was necessary to help the body help the liver release glucose to help bring the levels up.

I agree that these could all be compensatory actions, and once again, the researchers need to find out WHY. Keep being the lab rat and figuring out what reactions you have and possible theories why. Keep us posted.

[Dizzysillyak]

I couldn't tolerate the sun 4 - 5 years ago either but now I can sit in the sun for 2 - 3 1/2 hours

and feel great .. I still burn a little if I'm in direct sun for too long .. BUT I heal within 12 - 24 hours.

I've never been so tanned .. Lol .. Hydration is key here..

I started feeling great in the sun about the same time as I started sweating normally again.

I suspect most chronic illnesses are due to poor diet aka the standard american diet and nutritional

deficiencies. These can lead to actual organ damage which may or may not be reversible.

Imho, it's really sad that we've learned that chronic illnesses are incurable .. Tc .. D

[sue1234]

Dizzy, was your restored ability to sweat directly related to going gluten-free? Or, you mention hydration? I think I don't sweat because I am hypovolemic and it is just a protective mechanism for my body to hold onto ANY fluids it already has(which I think is not enough).

[kluesyk]

I agree that we need sometimes to adjust both... I take licorice, clonidine AND a small amount of midodrine both in the morning. I also drink 2 cups of coffee (caffeine), put my compression tights on and can usually function for a good three hours. My Dr at Vandy said even tho it seems to contradict, some patients need both meds, one to bring down everything and one to constrict. I use very small amounts and it works for me. I am VERY sensitive to meds, so small amounts do it for me.

IF I wake up with a migraine and have to take my migraine meds(which constrict blood vessels) I CANNOT take the midodrine or licorice or the blood pressure will go too high and stay there. Again....my regulators seem to be broke, so I have to always be thinking on how to keep everything even....

[issie]

Yeah, I get what is called sun poisioning and have very sensitive skin and burn easily - of Irish/English descent - blue eyed and medium blond hair. PABA is good for those with sun sensitivites and helps sun poisioning.

[Dizzysillyak]

I'm not sure why I stopped reacting to the sun. I didn't just go gf tho. My doc put me on the elimination

diet, so no common food intolerences or chemicals. I didn't notice a change in my ability to sweat until

after I went on the paleo and low oxalate diets a couple of years later.

I can't seem to get enough of being outside now. For some reason too, I typically fall asleep after I've been

in the sun for 15 minutes too. It's just a twilight sleep but very refreshing still ..

I have no idea why this changed .. So many of my symptoms

are gone now. Just not the oi.

My story appears to be common for many who start eating healthy foods. Dr wahls is a great example

of this.

I stay hydrated at the beach now with my green smoothies. This is the best hydration source I've found for me. I could stay all day if they had potties.. Lol .. My smoothies are water, assorted veggies(mostly leafy greens), 3\4 banana, 1/4 apple, 1/3 avocado, 1 - 2 tbsp ground flax, salt and spirulina.

Tc .. D

[yogini]

Rama,

You are much more into the specific scientific details than me. I think the reason people are so hard to treat is because they so often have one or more difficult coconditions going on. Something like mitochondrial disease, chiari or EDS for which there is no easy treatment, if any treatment. Severe allergies or sensitivity to meds. Asthma which affects oxygen intake. Gastroparesis limiting the ability to eat/drink, lowering their body weight/water retention and making their POTS worse. Autoimmune issues.

There are a lot of treatments out there that doctors don't know about, if they have even heard of Dys in the first place.

exercise could help us, if only we could find the energy and stable enough HR/BP to exercise, and could afford to be sick for days afterword.

for the rest of us, who may not have any of these issues (that we know about) and can tolerate medications (and afford them, and find a dr willing to prescribe) the meds don't address all the symptoms and have lovely side effects of their own.

Such fun indeed!

Edited February 8, 2012 by yogini

[rubytuesday]

Tonight on my third day of midodrine and having made the mistake of combining it with a can of coke and feeling like im on speed I came up with a new theory about POTs and why some of us may be hard to treat.

Firstly looking at three of the theories of POTS:

1. The vandy theory that suggests that angiotensin II is elevated resulting in reduced stomach angiotensin II vasoconstriction because angiotensin II receptors are downregulated. This results in compensatory sympathetic system activation and hyper symptoms in a bid to try and counteract this faulty ang II vasconstriction.

2. Normal flow POTS - where perhaps in some there is excessive nitric oxide vasodilating the stomach vascular system resulting in sympathetic activation to try and counteract this dilation.

3. NET deficiency where there may be a situation where patients cycle from too little or too much norepinephrine.

Then I consider what ive often noticed about POTS. There are two different things happening - there is the dizzy, fatiguey tired thing and then there is the wired/tired feeling and the sympathetic symptoms.

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?

just a late night theory

Makes sense to me. Maybe that is why docs have putting finger on pulse of the stomach/GI issues, too.

[Trach]

I agree with yogini. Dr. Grubb told us that treating POTS is like treating a moving target and that every patient is unique in his/her response to medication and other treatments.

[ramakentesh]

Coke is poison - I know. But it tasted nice

Placebo is an amazing thing

[ramakentesh]

I suspect most chronic illnesses are due to poor diet aka the standard american diet and nutritional

deficiencies. These can lead to actual organ damage which may or may not be reversible.

Imho, it's really sad that we've learned that chronic illnesses are incurable .. Tc .. D

I suspect your right but the problem is probably epigenetic - that is once its done and your gene expression has been altered how do you return it back to its previous state? Some minor epigenetic changes can last years or even decades and some (such as cancer and diabetes m type II are permanent).

Just as often ignored is the fact that our foods are now saturated with chemicals - tomatoes are gased ripe, apricots have their cells split so that they swell twice as large, farmers using pesticides that all creep into our water catchments. We take medications that may have profound consequences that we as yet have no idea of (remember arsenic was considered safe once). We breath in air filled with diesal and other fumes. We all get our kids immunised and surround them with plastics from an early age. Did you know that all artificial colourings are made from petroleum??

I eat a mandarin from the store and I feel nothing. I eat one from my tree and I feel fantastic. So I see say go organic and if you can, grow your own.

As for chronic illnesses being incurable. Well it depends what your talking about. Some appear to be. Others where remission is possible its hard to say why remission occurs. Remission can occur spontaneously in many autoimmune diseases and its likely that the patient will attribute that spontaneous remission to be a consequence of what ever they were doing at the time. it could be right, but it could also just be that the epigenetic alteration or hypermethylation has decreased over time. perhaps there are diets and ways to avoid or fix these problems over time?

But we need to be careful of the placebo effect in some ways - although if we believe something is going to work - even placebo - then it is more likely that it will.

i remember reading how 20 anxious patients were given the same medication and then asked whether they trusted their doctors and whether they expected the medication to work. The 8 that answered yes to both those questions found the medication helpful and two thirds of the ones that answered no didnt.

Do I think POTS is curable? God yes. I have absolutely no doubt that in my case where i can go from 100% well to POTSie again in the space of ten minutes and then Ican get spontaneous fluctuations where ank spond flares up and POTS goes away that it is curable. Something or a process is causing it and that process may be quite treatable.

All i can do is try things, read the research, make my own judgmentsa about what does and doesnt work and go from there.

I havent really found any of the medications to be overly helpful and would probably say that they rival the natural things i have found myself from my own research. But that doesnt stop me believing that one day a paper will be published that pinpoints an obvious problem.

[issie]

Rama - you're so right. I like the positive way you think.

I've had this most of my life and I know some of it is genetic - EDS. Some of it is autoimmune, some of it is chemical induced from where I was raised and from immunizations. But, I still want to believe that there is SOMETHING that can give me more quality of life. I don't have as long of a life to live as some of you younger ones - but, in my mind I'm still 18 and I want to live forever. I'd just like to live right now with a little more quality of life. I enjoy talking to you younger ones - I don't think of myself as being older - just in the same boat with a goal of where to travel to. I feel young when I talk to you all - even if some of you are my age too. Here's to being young at heart and in mind.

Issie

[Dizzysillyak]

My ataxia has been gone for 5 1/2 years now but I worry that it will come back. So I hear you

on certain genes being turned on. I'm assuming my ataxia was gluten ataxia since I have the dq2 gene.

I'm just not sure how realistic the stats on genetics and disease area are since no

one is keeping track of those who heal. The AMA hasn't contacted me yet .. Lol .

It's interesting how many of us know what foods are healthy and yet our grocery stores are 98%

full of garbage food. I have to drive an hour for grass fed beef ..

Just say no .. Lol .. Tc .. D

[yogini]

A bad diet, chemicals, polution etc., certainly don't help, but I don't think POTS is caused by diet. I remember reading that POTS (solidier's heart) existed during the Civil War, back when food used to be real! And the average American diet is atrocious, yet hardly anyone has POTS. In fact I think the people on this forum are way more diet conscious than the average person...other than those from yoga who are vegan, macrobiotic, etc. (many of whom have chronic health issues anyway).

I am certain that most people will improve over time - believe it or not, that is already true, but stats will get better as research continues.

[skiberthoud]

Rama and Issie - I like the way you think! Must be because that's how I think, too. When I first started seeing my Naturopath he noticed that I flip flopped between sympathetic and parasympathetic dominance...and, Issie, one of the first things we started to work on was my liver. We do live in such a polluted world. I fully believe in the rain barrel effect. I think we need to do what we can to empty our barrel as much as possible. There is no question that you will feel better if you take the appropriate steps to clean yourself from the inside out and control what goes in to the best of your ability. My thought, since I've been "ill," is that I will do whatever I can do - control what I can control - exercise, detox, change my diet, stop ignoring my food allergies, etc...- and then see what's left over. I figure there are things I can do to lessen the load on my body so that it can deal with whatever it has to deal with - whatever is causing the POTS. So far the results are good. Just a note - I don't have any of the genetic or autoimmune issues in the background like many of you do. I'm a pretty easy case. I'm sorry for what others have to deal with. Ok, wow, what a ramble...I digress....

[issie]

Tablet,

You're so cute. It's okay to ramble here - we like it. Glad you like how my mind works - sometimes, it's way different than the crowds. I don't always follow the majority. What a rebel! LOL

I do agree. Do what you can and then see what is left over. Then what is left over maybe a doctor can address.

Issie

[julieph85]

Rama, I couldn't agree more about placebo effect. I don't know how many times I have wished a doc would prescribe me a sugar pill and tell me it will take all my symptoms away. I know I would at least get some temporary relief

[ramakentesh]

HAHA - yeah probably better than the stuff they think will actually work!

[Chaos]

Interesting study recently on placebos where they gave people in the study placebos and TOLD THEM they were placebos and they still had a significant improvement in their symptoms. I'll have to see if I can find the citation.

[Dizzysillyak]

One poor man's tilt table test would prove whether a placebo worked or not. Lol

We've been eating wheat and dairy for centuries so all this time our ancestors were being exposed

to thses toxins too. Of course we're not all going to get pots or diabetes or even obese from eating the

same foods. Our bodies are more complicated than that.

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. They thought they were just tired or weak .. I was diagnosed

with cfs so I did too. Duh .. I didn't understand ataxia until mine was gone and I googled "problems

walking." And then read that it's diagnosed via the rhomberg which I had always failed.

It's funny, I have a freind with a medical background who used to yell at me when I would bump into her due

to ataxia. The nurse at my docs office did too .. I would've thought they'd known this stuff ..

So, from what I've seen the number of people actually have this is unknown because we'e not talking

the same language .. Apparently, from what I've seen, even some medical professional aren't up on this.

Tc .. D

[ramakentesh]

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.

[Dizzysillyak]

Hi rama,

I appreciate what you're saying and prefer professional medical involvement too but ..

The point I was trying to make is that from what I've seen, MOST people won't get a proper diagnosis

of dysautonomia because unless they're fainting, they go see their doctors complaining of dizziness, fatigue or weakness.

And since the treatment for oi in many cases is bed rest, which is what their doctors recommended, they'll never figure this out. They just train themselves to rest ... And get a reputation for being lazy.

How many doctors do a poor man's tilt table test on a patient who's complaining of dizziness, weakness or fatigue ? (almost none .. ) Our labs are normal so that's no help.

I don't faint and my hr and bp are always within normal range so it's not obvious without tilt table testing.

I would imagine sometimes pots is caught but not always either. I've known that I had oi for 20 years, but I tested myself for tachycardia / pots a few months ago because I feel soooo crappy after being upright for awhile. The only reason I knew to look at this tho was from hanging out here. I was shocked to learn my hr jumped 30 pts. Most peope I know wouldn't have tested themselves for this.

Tc .. D