Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

[xchocoholic]

When the "root cause" of ME isnt known, its hard for them to be treating root causes and that is a rather high expectation. Its usually up to science and studies to discover root causes of illnesses and prove root them, not a doctor.

I think our ME/CFS specialists are currently just doing the best they can as the situation currently is. (There is the added thing of also very possibly loosing their medical licences if they start giving out too much experimental treatments).

Its the lack of funding for real science... we need to be beating up on.

Im sure our specialists probably hear of "miracle" stories every day and every person is telling them it was a different thing which helped.

Without numbers of patients saying exactly the same thing.. this illness is near impossible to sort out.. and real science is the only thing which probably can do.

It isnt our doctors role to be scientists, their role layes in just trying to treat in the best way they can, while under a heap of medical regulations. I think all ME/CFS specialists are doing quite a hard job.

Hi tan,

I've been trying not to beat up on our cfs specialists for 7 years now but the more I learn about how our bodies work the harder it gets. I'm not sure who to be angry with, if not them. They are our researchers too.

I'm not familiar with the "rules" in medical care but integrative doctors aren't breaking them either.

Cfs, by definition, is just a group of symptoms and Imho, it's just logical to look at each of our symptoms and try to determine what's causing them. And this is what integrative or functional doctors do. I didn't make this up .. Lol .. These doctors are mds who've also learned holistic treatments so they can help their patients. They've have been around for a few years. Dr myhill is one.

Regardless of what caused the patient to get cfs, or that group of symptoms, these doctors run tests to
look for possible causes. For example - The nih states that celiac disease is often misdiagnosed as cfs.
So they will test patients for that.

Imho, it's easy to see how anyone could wind up with the diagnosis of cfs if you look at nutritional deficiencies parasites, dysbiosis, leaky gut, etc.

Tc .. X

 

[barbc56]

Barb C, when you say you've taken it for the last fifteen years, is that daily? Many thanks

Anniekim, I hope my response to your post is not redundant by the end of this thread. I just now saw it and have only caught up to page 3 at this point.

Yes, I take it daily. I used to take it 1 mg. in the AM and 1mg. at night. I now take 1.5 mg. at night. Reducing the dosage was no picnic but it wasn't that bad and I went through a bad withdrawal with Ativan about 20 years ago. It took me several months to get off the Ativan.

However, Klonopin was prescribed because of my restless legs syndrome. I had some sleep issues related to the RLS addressed and have gone to the lower dose and possibly may drop that by .5 mg. when I see my doctor a week from Friday. I used to also take Trazadone for sleep but don't take that anymore because of the above, so don't know if this applies if used for other conditions.

Post or PM me is you want additional information. Now to the last page!! I would have gone there first but you know how it is with this fog!!

Barb C. :>)

ETA With theKlonepin, I have not felt the need to increase the dosage to get the same affect, however I did with the Ativan even though I was never over a therapuetic dose when I quit. Again, this is my personal experience.

 

[Valentijn]

When the "root cause" of ME isnt known, its hard for them to be treating root causes and that is a rather high expectation. Its usually up to science and studies to discover root causes of illnesses and prove root them, not a doctor.

I partially agree, and partially disagree. Obviously I don't expect any of my doctors to "solve" ME/CFS. But as an example of what Xchocoholic is saying, I have different doctors that approach my symptoms very differently:

Mainstream ME/CFS/Fatigue specialist - I report a simple symptom (sleep issues) that is bothering me, and she emails me a new prescription to try. It makes symptoms worse, so she sends me a new prescription. Or I report a more complicated symptom or group of symptoms (OI) and she sends me off to a bunch of different specialists that mostly don't make sense in the context of ME.

Naturopathic Doctor/Nurse Practitioner - I report a bunch of complicated symptoms, looking for resolution of the most disabling one. He listens and asks questions for 90 minutes, then has targeted testing done that makes sense given the symptoms. Then he prescribes treatment based on the results plus the symptoms. He tells me to contact him if it stops working or other problems arise, so we can investigate further and/or change the treatment.

I don't think Xchocoholic is looking for "The Cure" from her doctors. But patients deserve something better from their doctors than random guesses that can have nasty side effects.

Instead of saying "you can't sleep, take X, it helps some people", "I guess that didn't work, try Y, then Z", etc, they should find out WHY you can't sleep at the outset, and pick a treatment that makes sense. The closer the doctor gets to the origins of an issue, the more effective and less disruptive the treatment is likely to be.

If they get very close to the origins of symptoms, you might have seemingly unrelated issues resolved all at once. For example, based on the testing I've had done, treatment of my neurotransmitter issues might help my OI.

Or maybe the problem is a little deeper and testing the hormones (angiotensin, aldosterone, vasopressin) that can affect those neurotransmitters will lead to treating that deeper problem, which could resolve both the OI and whatever else those could be messing up. And if one of those is the problem, why not look even deeper to see what might be messing up those?

It's ridiculous that doctors take a problem like OI and "treat" it simply by finding ways to make us retain more water. Maybe that -is- the only solution in some cases, but they should at least be investigating it as best they can, ESPECIALLY when many other symptoms are occurring. My goal is to get my body as functional as is possible absent a cure, and to me that means getting near the source of problems instead of treating the most superficial aspects of each problem.

 

[barbc56]

Naturopathic Doctor/Nurse Practitioner - I report a bunch of complicated symptoms, looking for resolution of the most disabling one. He listens and asks questions for 90 minutes, then has targeted testing done that makes sense given the symptoms. Then he prescribes treatment based on the results plus the symptoms. He tells me to contact him if it stops working or other problems arise, so we can investigate further and/or change the treatment.

I would have to disagree with this statement. It's too generalized. My mainstream doctor does the above.

Doing the above is the best practice for any medical treatment.

Again, this is my personal experience.

Barb C.:>)

ETA Except the 90 minutes but definitely quality time.

 

[Valentijn]

I would have to disagree with this statement. It's too generalized. My mainstream doctor does the above.

Doing the above is the best practice for any medical treatment.

Yes, a good mainstream doctor will. Most don't. And as I said, it was an example of MY doctors, not a description of all doctors. The point was (and is) that a lot of doctors, especially mainstream ones, will not look into causes of problems, but just try random drugs until something works. And we need to find doctors that will treat us better than that.

 

[taniaaust1]

Yes, a good mainstream doctor will. Most don't. And as I said, it was an example of MY doctors, not a description of all doctors. The point was (and is) that a lot of doctors, especially mainstream ones, will not look into causes of problems, but just try random drugs until something works. And we need to find doctors that will treat us better than that.

It is true that they sometimes dont look into the whys as much as they should for our individual symptoms. Unfortuantely we also have so many symptoms doctors find it near impossible to keep up.. unlike a naturopath they cant be taking 90mins with each of their patients. That just isnt how the normal medical profession runs, it isnt how the whole health system is set up to run. (I did have a CFS specialist who used to spend up to 3 hrs at a time with me.. but Im sure he wasnt getting paid for all that time).

I know with my doctor I can book a long appointment or a short appointment.. and he's paid by the health system for those.. those long appointments arent all that long.. maybe 20mins? with a short appointment being about 10mins? . It is near impossible with this time, for them to be spending as much time on this as naturopaths can.

Its not just a time factor.. we are also too complex for a standard doctor to even know what tests exactly to be giving us... even CFS specialists have that issue eg Not one of the four CFS specialists I used to see knew about POTS, they hadnt even heard of it.

Its impossible for a doctor to rule something in or out or even treat it, if he's never even heard of it. (things become very wrong thou when a patient goes in to a doctor saying they think they have something which a doctor dont know about, but the doctor dont even go and look it up).

I think many doctors are focused on just wanting to "fix" things.. the causes may not bother them so much for a symptom as long as they can "fix" it, by just giving them a med or whatever. This is probably the rational for throwing various drugs at someone and "trialing" drug after drug.(often its just they dont really know what to do.. medical school im sure dont teach them to use their brains).

 

[xchocoholic]

Hi,

I don't see time as the problem. It's about ordering and interpreting the right tests. Jsyk, medicare has paid for all of these tests so they are accepted as valid.

On my initial appointments to my integrative doc, she ordered
a comprehensive stool test and nutrient testing by a local lab. I had no idea we even had a local
lab that would test for nutrients.

Later she ordered a nutreval, complete hormone panel, both blood and saliva, and spectracell nutrient tests. And most
recently ordered the metametrix stool tests.

She's ordered numerous traditional tests over the years too. Including a gtt + insulin, pregnenolone, dhea, etc etc.

Without these, I wouldn't have known these things or how screwed up my body was.

To give you an example of how an integrative doc thinks versus traditional -

I was just treated for h pylori and parasites. My symptoms were gastroparesis, constipation and hr jumping up 30 pts within a minute of standing. My doc ran a wide variety of tests inc stool tests so we could find the cause. She found it and treated it successfully.

My old traditional gp would've given
me drugs for my symptoms. And told me it was just my cfs because cfs waxes and wanes. No telling how bad things would've gotten if these were left untreated.

Any doctor can learn how to do this. They've proven they're intelligent enough and can certanly
handle complex situations. Imho, the current medical environment discourages creative thinking. Which
I find odd since these people are talented enough to be creative if given the opportunity.

Tc .. X

 

[barbc56]

I think we have to be careful of making sweeping statements either way. I am also speaking for myself.

I would rather see a mainstream doctor as they are mostly science based. I absolutely think I have a better chance with a mainstream doctor. I am lucky that my doctor(s) include me in decisions for treatments, medications and discussing the known the benefits vs. the risk.

I don't want to have tests, treatments that possibly aren't shown to be valid/ proven or grounded in very little science, but that's my personal choice. I don't want to have supplements thrown at me if I don't have a deficiency or if it hasn't been shown to be beneficial.

Let's face it. Whether it's supplements or medications we tend to think a pill will be a panaces for all our ills.

I do think the system hampers many mainstream doctors and that is too bad but I think the positives outweigh the negatives.

I guess I just don't understand the rational that because mainstream medicine can't cure everything we have to go to unproven techniques. It's akin to throwing the baby out with the bathwater.

I want to be informed of all the options to make the best possible choice when it comes to my health. :Retro smile:

Barb C.:>)

 

[xchocoholic]

Hi barb,

I could be wrong but I think you're missing out on what an integrative aka functional doctor is.

These are traditionally trained medical doctors who witnessed for themselves how drugs
didn't always work for their patients or themselves and definitely weren't helping their patients heal so they decided to increase their training by learning
about how nutrients affect the body. They're not taught this in med school.

Dr terry wahls explains this perfectly in her ted video. In short .. She's an md, who got ms, went the traditional route, got worse, tried supplements, improved a little, then she created a diet for herself. And now she's much better.

I'm not sure how long these doctors have been around, but I wouldn't call their tools or treatments experimental.
Dr mark hyman is on the us health committee and he's an integrative doctor. He has been for years. He wrote an article predicting this to be the future in medicine. Seriously, with most people using supplements
and rethinking their diets now, is there a choice ?

And I don't think Medicare pays for experimental tests and yet they pay for these. Supplements aren't thrown at patients either. Lol ..
These doctors use drugs, diet, supplements, etc depending on what's appropriate. They're free to order any and all traditional tests or holistic tests.

These doctors don't claim to be miracle workers. Personally, I'd be suspicious of one who did. They just work with patients to determine root causes of symptoms based on the tests available and
each patients reaction to each treatment. Sadly, some of us, me, have more roots than others. ; )

To each his own tho. Good luck with whatever you do.

Btw, hixxy, sorry for hijacking your thread. Tc .. X

 

[taniaaust1]

xhocoholic. My previous CFS specialist was actually an integrative doctor (medical practitioner) one could say.. he seemed to be quite anti drug in many ways and more into nutrition etc. He's the one who also had me do a hair test.

He was a nightmare as he just suggested supplements etc for all my issues. He didnt look further into my sleep issues or anything (didnt suggest to send me to a sleep clinic to see why).. just prescribed melatonin and wouldnt give me sleeping pills. He ignored so much.

I feel real let down by him thou as he still didnt get so many tests I wanted done, he didnt get gut tests done etc... he also still ignored so much (didnt bother researching POTS at all when I told him I had that, instead he kept on sending me to the heart clinic).

He did manage to help me with the findings which came out of hair test and the supplements there have helped my brain... but other then that.. he was actually no help to me at all (he did also get me tested for a polymorphism which it was found I have, but the supplements for it dont help me in my symptoms).
.........

I actually came down with ME/CFS while doing a government accrediated course to became a Naturopath. I tried so many different Naturopathy things as I was quite anti doctors.. nothing helped with my symptoms so I ended up turning to doctors. (I did go to a naturopath too early in my illness.. which helped none)

I think how much a practitoner be it a normal doctor, a integrated one or a naturopath looks into stuff.. all depends on the actual individual and also depends on how far their knowledge extends.

One of the biggest things which helped me was finding out I had hyperinsulinemia.. no naturopath, nor the intergrated doc.. ever suggested I do a 2hr GTT .. It was an physcian/allergist which had me do that test.

sounds like you were much luckier with your my integrative doc then I was.

 

[hixxy]

I think we have to be careful of making sweeping statements either way. I am also speaking for myself.

I would rather see a mainstream doctor as they are mostly science based. I absolutely think I have a better chance with a mainstream doctor. I am lucky that my doctor(s) include me in decisions for treatments, medications and discussing the known the benefits vs. the risk.

I don't want to have tests, treatments that possibly aren't shown to be valid/ proven or grounded in very little science, but that's my personal choice. I don't want to have supplements thrown at me if I don't have a deficiency or if it hasn't been shown to be beneficial.

Let's face it. Whether it's supplements or medications we tend to think a pill will be a panaces for all our ills.

I do think the system hampers many mainstream doctors and that is too bad but I think the positives outweigh the negatives.

I guess I just don't understand the rational that because mainstream medicine can't cure everything we have to go to unproven techniques. It's akin to throwing the baby out with the bathwater.

I want to be informed of all the options to make the best possible choice when it comes to my health. :Retro smile:

Barb C.:>)

How are biochemistry and nutrition not science? This is pretty much the foundation for functional medicine.

Most doctors cringe at the prospect of studying biochemistry (this is one of the hardest parts of medical training), and well nutritional training, we have the drug companies for slicing this from the curriculum. It's is undeniable the nutritional manipulation is beneficial in a LOT of diseases, yet these science based doctors are completely untrained in it and don't want anything to do with it.

Conventional doctors are also far too heavily reliant on certain types of pathology testing that have been proven time and again to not be reflective of the true homeostasis of the body. They are unable to think out of the box. Their treatment is purely algorithmic and the algorithms were laid down for them -- they rarely expand on them or discover new solutions.

Not to mention the number of conventional doctors that dismiss certain symptoms and pathologies as being insignificant when they are clearly not. This is something I have found far less in functional / integrative medicine.

Another tidbit, I have seen sooo many double blind placebo studies where one study contradicts another that I start to wonder even more about science / evidence based medicine.

hixxy

 

[xchocoholic]

Hi tan,

Sorry to hear that you had such a bad experience with your integrative doctor. Based on the research
I've seen on the web, it sounds like mine ran the normal tests so I never questioned it.

She was also recommended by people working at a local hfs. The people working at
this store go through a lot of training so I felt I could trust their opinion on local doctors.
My other mds knew her from when she worked with them too and trusted her opinion.
Needless to say, I checked her out before going there.

I saw a chiro turned kinesiologist in the early 90's who failed me tho so I get it.

Are you familiar with the DAN / leaky gut protocal for autism ? I first learned about this
on the web. One of my favorite books was Jenny Mc Carthy's "Louder than words". She
made me laugh at a time when I needed it and helped me transition to trusting non traditional
medicine. "Healing the 4 A's" was good too.

Fwiw, tho I've had to learn things on my own too. No one can predict 100% how a supplement or diet change will affect someone. And I can't afford
to see a doctor for everything.. Besides, I enjoy researching and experimenting. I'm sure my freinds and family wish I'd stop .. Lol ..
Researching and experimenting is pretty much what I did while working as a programmer analyst tho so it's "normal" for me.

Tc .. X

 

[barbc56]

Hi barb,

I could be wrong but I think you're missing out on what an integrative aka functional doctor is.

These are traditionally trained medical doctors who witnessed for themselves how drugs
didn't always work for their patients or themselves and definitely weren't helping their patients heal so they decided to increase their training by learning
about how nutrients affect the body. They're not taught this in med school.

Dr terry wahls explains this perfectly in her ted video. In short .. She's an md, who got ms, went the traditional route, got worse, tried supplements, improved a little, then she created a diet for herself. And now she's much better.

I'm not sure how long these doctors have been around, but I wouldn't call their tools or treatments experimental.
Dr mark hyman is on the us health committee and he's an integrative doctor. He has been for years. He wrote an article predicting this to be the future in medicine. Seriously, with most people using supplements
and rethinking their diets now, is there a choice ?

And I don't think Medicare pays for experimental tests and yet they pay for these. Supplements aren't thrown at patients either. Lol ..
These doctors use drugs, diet, supplements, etc depending on what's appropriate. They're free to order any and all traditional tests or holistic tests.

These doctors don't claim to be miracle workers. Personally, I'd be suspicious of one who did. They just work with patients to determine root causes of symptoms based on the tests available and
each patients reaction to each treatment. Sadly, some of us, me, have more roots than others. ; )

To each his own tho. Good luck with whatever you do.

Btw, hixxy, sorry for hijacking your thread. Tc .. X

Yes, this thread has become hopelessly off topic and I have contributed to that. Sorry Hixxy!!

Possibly another thread about alternative medicine vs. science based medicine. However, I may get long winded as this is a subject I feel strongly about but right now I am wiped out and not sure if it's worth it to start a thread about this.

There's a good book called "Trick of Treatment" by Edward Ernst who was the first professor of CAM in England He not only explains why science based medicine is important but how the scientific method got started. He goes through different alternative treatments. Surprise, there are some alternative treatments that work but he as many scientiest/medical professionals would considered these as mainstream medicine., even though it isn't considered that by the general public.

Guess who was the first person to collect data and used this to back up her claims? Florence Nightingale who later in her life developed ME/CFS.

Do we have a thread where this Book as a resource, might better suited?

Thanks and good luck to you, too xchocoholic, in whatever you choose for your medical care.

Barb C.:>)

 

[Valentijn]

Possibly another thread about alternative medicine vs. science based medicine.

Except no one was talking about alternative medicine Just about naturopaths/integrative doctors that look into underlying causes instead of throwing random pills at you. I don't think there's anything controversial or "alternative" about that ... the benefits of vitamins are just as well-established (more so in fact) as most drugs.

In most cases, these are real, properly trained, licensed doctors that can do the same things as mainstream practitioners - they can order the same tests, make the same referrals, and prescribe the same drugs. They're just likely to spend more time trying to figure out what's really going on.

It's still science-based medicine.

 

[hixxy]

I agree Valentijn. I also have a rule. I don't consult doctors who work exclusively without drugs and I don't consult doctors who work exclusively with drugs.

Any doctor who is going to care for me needs to know the benefits of both and when to use them!

There's been times in the past when I've consulted doctors who refused to prescribe hard drugs to treat my gut and I wallowed away making no progress on herbal treatments. Then first go on abx I improve a heap!

Then of course there have been those other times when I've been made try drugs (such as antidepressants) that have just made matters worse and I'm still paying for today.

 

[xchocoholic]

Thanks val and hixxy,

That's exactly what I was trying to say too.

Now if we/they can just get to the bottom of oi and excitotoxins in ME,
we'll be "cured". That's if it's possible. I had brain damage (ataxia and white lesions) that's gone now via diet but I'm not sure what else may have happened.

I still have myoclonus and crazy insomnia from excitotoxins.
Both of these conditions are completely controllable for me via diet, gf mainly, theanine, 5 htp, and melatonin. But if I've taken anything I know is an excitotoxin for me, b6 or juicing lately, .125 subligual klonopin will take care of this.

Fwiw, I'm working on killing bad bacteria right now but will still need to address an unknown parasite found in my metametrix stool test.

I'm using keflex now fow a uti, which I'm sure was due to passing a stone but I've had recurrent utis since getting sick in 1990.

I treated for h pylori and a different parasit in dec 2011 and feb 2012. Both are gone per my metametrix test. My doc used prescription antibiotics because she knew holistic wouln't work.

Oh and per the same test, I'm low on elastace (meaning I can't process fats) and have been prescribed a prescription pancreatic enzyme. I became allergic to the otc digestive enzymes last year.

It will be interesting to see how this affects my body's ability to handle excitotoxins.

Tc . X

 

[barbc56]

Here we go again.

Naturopaths/integrative doctors are not considered practitioners of science based medicine. Yes, they will use mainstream tests but have also been known to use tests that are not valid or reliable. Yes, they may be doctors but doctor's who also use alternative treatments that do not fall under science based medicine.

Maybe I should write a blog as this thread is not the place to debate this topic. Bye. :headache:

Barb C. :>)

 

[leela]

Naturopaths/integrative doctors are not considered practitioners of science based medicine.

This is your opinion, which you formed according to your own means, and are entirely entitled to.
However, naturopaths attend four years (minimum) medical school, same as any doctor--the difference being they do not learn about (and therefore are not allowed to prescribe) Rx medicines. They focus instead on nutritional and supplemental interventions.

 

[Valentijn]

the difference being they do not learn about (and therefore are not allowed to prescribe) Rx medicines.

I think it depends on where they're licensed. In Washington State at least, they can prescribe most drugs (but are required to have an education equivalent to that of an MD).

 

[taniaaust1]

Hi tan,

Sorry to hear that you had such a bad experience with your integrative doctor. Based on the research
I've seen on the web, it sounds like mine ran the normal tests so I never questioned it.

She was also recommended by people working at a local hfs. The people working at
this store go through a lot of training so I felt I could trust their opinion on local doctors.
My other mds knew her from when she worked with them too and trusted her opinion.
Needless to say, I checked her out before going there.

That doctor (Dr John Graham) I actually did find throu recommendation. He was actually recommended to me by the local ME/CFS society and the only doctor they'd recommend at the time (they actually have him giving a talk at the society coming up, unless its just been).

He thou obviously thou is just another doctor who knows far more about CFS then about ME (He didnt even know of POTS.. my collapses he kept on thinking must be heart issues.. and my seizure like activity..he kept on thinking epilespy must of been missed.. no real ME understanding at all and of the issues it causes). Many who have CFS thou may be finding him ok

I wish I could get rid of my anger at seeing him for years but him not doing anything to help me nor listening to me. Ive had heaps of help for dealing with my symptoms from other specialists since Ive left seeing him... they havent left me just to suffer with my symptoms as he did. It is such a relief to be being helped and have my symptoms improving.

I guess it all shows just what a poor quality the doctors are in my state.

Are you familiar with the DAN / leaky gut protocal for autism ? I first learned about this on the web.

No Im not familiar with that protocal and would look into it if I still had the issues going on which I used to have. I do thou think I did have major issues with leaky gut at one point due to I developed a lot of food intollerences but my food intollerences are now basically all cleared up. No reactions anymore to dairy and a lot of other things.

Gotta still watch caffiene thou..but I dont think is affecting me throu leaky gut but rather is too much stimulant for my system (POTS trigger).. I still need special diet due to my insulin issues which arent leaky gut.