Has anyone else tried clemastine fumarate @ new relapse?

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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Thu Jan 04, 2018 5:24 pm

jimmylegs wrote:yeah you pick and choose with klenner. i should have paid more attention to the minerals but it was too much info at the time. defs skipped the liver extract and did nothing whatsoever via injection. i remember mostly the protein element which meant a switch from vegan meals to eggs for brekkies, sprinkling lecithin granules on my food, and pounding vit E and B vits like a madwoman. and oh, dat niacin flush - whew! no mention at all of vit d3 in the protocol. too old.

wow that's great to hear you canned the coke! re tests, can u also ask for serum zinc and serum copper perchance perhaps? also serum mag to go with your serum 25(OH)d3?


I’d been taking 400mg mag religiously all last year and barely any d, so I’m not worried about magnesium at all. I won’t touch copper or zinc until my carrier proteins (ferritin, ceruloplasmin) start behaving so there’s little use for zinc/copper testing. Once my ferritin moves properly, I’ll look at zinc/copper again. (My copper/ceruloplasmin and iron/ferritin play the same game). I will try to incorporate more zinc rich foods when the mood to make another change strikes though.

Thanks THX. :)
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Thu Jan 04, 2018 5:40 pm

buuut what if ferritin and/or ceruloplasmin are misbehaving because of something zinc and/or copper related?

re mag even though you're supplementing, i figure it never hurts to have a look at your cofactors status if you're working on d3!
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Fri Jan 05, 2018 7:15 am

jimmylegs wrote:buuut what if ferritin and/or ceruloplasmin are misbehaving because of something zinc and/or copper related?

re mag even though you're supplementing, i figure it never hurts to have a look at your cofactors status if you're working on d3!


I’ve been at the ferritin/ceruloplasmin thing since winter 2013. Zinc/copper are not the primary culprits. I would not change a thing about my mag regimen no matter the lab result...pretty sure it would be impossible to get too high @ 400mg/day.

I’ve made other big changes over the past year that may have impacted my misbehaving carriers. We both know everything is way too complex to manage by simply testing, retesting, and tweaking the same few factors over and over and over again. (Btw, my copper/zinc ratio/levels were perfect (according to you!) without supplements before the big crash)

I’ll let you know if things have moved in the right direction as a result of the changes I’ve made. :)
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Fri Jan 05, 2018 7:21 am

i'm far from concerned about mag being too high. i am extremely interested in the serum copper zinc ratio and will have to review older posts. glad you figured out the thiamine connection and hope the ferritin/ceruloplasmin thing gets sorted out too. i havent run into any such issue before. any particularly good studies you can point to?
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Fri Jan 05, 2018 8:41 am

jimmylegs wrote:i'm far from concerned about mag being too high. i am extremely interested in the serum copper zinc ratio and will have to review older posts. glad you figured out the thiamine connection and hope the ferritin/ceruloplasmin thing gets sorted out too. i havent run into any such issue before. any particularly good studies you can point to?


Nope. No studies, no nothing out there...just like the vitamin d-calcitriol-pain thing (suspect thiamine was involved in that problem). That’s why I’m trying random things like increasing protein intake and quitting artificial sweeteners.

We know nothing!! It’s amazing that we place such faith in experts and doctors and our own dogma (personally guilty...I cringe to think of my hpa-axis fervor days lol). Maybe if things fix based on my changes, you can do a study about the whole ordeal....you’d have to be able to find more special snowflakes like me though. :P
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Fri Jan 05, 2018 9:18 am

okay interesting. how have you defined ferritin/ceruloplasmin carries as a problem specifically? are you working with serum results that are off in some way? how does what you're looking at interact, if at all, with Wilson's?

boosting protein is key with our weird old friend klenner. it was one of the protocol elements that made the most sense to me, even though i'd been dutifully combining veg protein sources forever.

good for you re quitting fake sweeteners. i never could stand them myself! ugh, tab *shudder* lol

haha i think we are both fairly special snowflakes lol. n=2 and counting. it amuses me how many 'different' approaches all have essentially identical nutritional underpinnings though.
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Fri Jan 05, 2018 10:10 am

jimmylegs wrote:okay interesting. how have you defined ferritin/ceruloplasmin carries as a problem specifically? are you working with serum results that are off in some way? how does what you're looking at interact, if at all, with Wilson's?

Copper and iron go up with supplements. Ferritin and ceruloplasmin don’t. So, I wind up with lots of free iron and copper...no good. Was tested for Wilson’s by gastro who specializes in it and an eye doc. Negative test results. Neurologist says I must magically have lesions in perfect layout and position to mimic giant panda sign of Wilson’s disease. I’ve got the baby too. Gastro says not to pay attention to ceruloplasmin levels because they fluctuate. So, docs basically no help. Labs aren’t messed up. They consistently show same problem every time I have them done.

boosting protein is key with our weird old friend klenner. it was one of the protocol elements that made the most sense to me, even though i'd been dutifully combining veg protein sources forever.
increasing protein was a hard thing for me to do after drinking the vegan koolaid—“we eat too much protein!! It’s not healthy!!”

good for you re quitting fake sweeteners. i never could stand them myself! ugh, tab *shudder* lol

STOP! You’re making me hanker for that awesome aftertaste. Lol

haha i think we are both fairly special snowflakes lol. n=2 and counting. it amuses me how many 'different' approaches all have essentially identical nutritional underpinnings though

We’re all special snowflakes!! I’m not so sure the different approaches are all the same. Granted, I’ve never paid attention to any of the diets. There’s so much in food beyond just vitamins and minerals. Relatively speaking, they’re just beginning to study other food “ingredients.” How could we even begin to quantify in order to compare diets??.
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Fri Jan 05, 2018 12:06 pm

ok interesting. so serum ferritin and ceruloplasmin are hanging out in what ballpark as of most recent tests?

what were the specific wilson's tests done and results given?

noticing this in passing

http://www.pathguy.com/lectures/wilsons.gif

re eye doc is it just presence absence of the ring around the iris? or other stuff too?
what was the gastro's deal?

"Neurologist says I must magically have lesions in perfect layout and position to mimic giant panda sign of Wilson’s disease. I’ve got the baby too."

sadly, my mind goes first to

https://www.youtube.com/watch?v=PBecnvm ... jreload=10

and then

http://bit.ly/2nVAjWk

but now this, finally

Image
and
Image

which in turn makes me think you have some real champs on the dx team over there. kind of like waiting long enough for all the wheels to come alllllllllll the way off before committing to action. nice.

clarification - i don't think the approaches are 'the same' but i think in many ways they get us to the same place at the end of the day. ie, closer to healthy controls nutrient levels than average patient levels. even drugs sometimes help change serum nutrient levels in beneficial ways!
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Fri Jan 05, 2018 12:40 pm

hi again, not super keen on the zinc results i've found for you so far

general-discussion-f1/topic21536.html?hilit=serum%20zinc

last message i see, 'get that zinc higher'

still hunting for your copper status!
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Fri Jan 05, 2018 12:47 pm

oh, you

Suspected Wilson's Disease Presenting with Normal Serum Ceruloplasmin (2016)
https://search.proquest.com/openview/02 ... bl=2029165
Wilson’s disease, also known as ‘Hepatolenticular degeneration’ is a disorder of copper handling. The clinical picture parallels the pathophysiology with symptoms of basal ganglia (10 to 100%), cerebellar dysfunction (18 to 73%) and liver dysfunction (18 to 84%). The patient profile usually describes a young male or female with signs of cerebellar dysfunction (Ataxia, Dysarthria and Nystagmus), basal ganglia dysfunction (Choreoathetosis), Kayser Fleisher (KF) rings in cornea and hepatic involvement (any form of acute or chronic liver disease). The basic pathophysiology relates to improper handling of copper by the liver owing to the dysfunctional ATP7B gene.

k starting point, interesting
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Fri Jan 05, 2018 12:50 pm

Paradigm shift in treatment of Wilson's disease: Zinc therapy now treatment of choice
http://www.sciencedirect.com/science/ar ... 0405001750
Zinc therapy has replaced penicillamine as first-line therapy for Wilson's disease. New guidelines reflect the paradigm shift in treatment that has occurred in recent years. In the old paradigm, Wilson's disease was seen as genetic disorder associated with the accumulation of copper in the liver and in other organs once the liver had become overloaded with copper. When left untreated, the disease was regarded as uniformly fatal. The old treatment guidelines advised, ‘decoppering’ with penicillamine because this chelating agent was considered effective in restoring most patients to health. Before the start of treatment, patients were warned that their symptoms could worsen during the first weeks or months of therapy, so as to prevent them from abandoning penicillamine therapy in dismay. In the new paradigm, Wilson's disease is seen as a hereditary disorder associated with copper intoxication. The essence of symptomatic Wilson's disease is poisoning by free copper in the blood, that is, by copper that is not bound to ceruloplasmin. This form of copper is toxic, whereas accumulated copper and copper that is bound to ceruloplasmin or metallothionein is not. The treatment of symptomatic Wilson's disease is no longer aimed at ‘decoppering’, the removal of accumulated copper, but at the normalization of the free copper concentration in blood, to reverse the copper poisoning. This can be achieved safely and effectively with zinc therapy. Zinc induces metallothionein, a highly effective detoxification protein that binds copper. Oral zinc therapy leads to storage of metallothionein-bound copper in the mucosa of the gut and to the excretion of copper via the stools. New treatment guidelines advise against the use of chelating agents as initial treatment because they may aggravate copper intoxication and cause iatrogenic deterioration.
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Fri Jan 05, 2018 12:52 pm

Wilson's disease in patients presenting with liver disease: A diagnostic challenge
http://www.sciencedirect.com/science/ar ... 8597700970

BACKGROUND & AIMS: In patients with Wilson's disease presenting with liver involvement, the correct diagnosis is often missed or delayed. The aim of this study was to find an algorithm for diagnosis of this difficult patient group. METHODS: Clinical and laboratory findings of 55 patients with Wilson's disease were evaluated at diagnosis before treatment. Presenting symptom was chronic liver disease in 17 patients, fulminant hepatic failure in 5 patients, hemolysis in 3 patients, and neurological disease in 20 patients, and 10 patients were detected by family screening (siblings). Evaluation included neurological and ophthalmologic examination, routine laboratory tests, and parameters of copper metabolism including liver copper content in 43 liver biopsy specimens. RESULTS: In the whole group, serum ceruloplasmin level was <20 mg/dL in 73%, urinary copper excretion was increased in 88%, and liver copper content was elevated in 91% at diagnosis. Kayser-Fleischer rings were detected in 55%. In contrast to patients with neurological disease (90% Kayser-Fleischer rings, 85% low ceruloplasmin), only 65% of patients presenting with liver disease were diagnosed by these typical findings. Ceruloplasmin levels were lower in patients with Kayser-Fleischer rings or with neurological disturbances than in patients without these symptoms. CONCLUSIONS: The commonly used clinical and laboratory parameters are not sufficient to exclude the diagnosis of Wilson's disease in patients with liver disease of unknown origin. (Gastroenterology 1997 Jul;113(1):212-8)
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Fri Jan 05, 2018 4:02 pm

Oh jimmy...lol

Not to be rude or anything but I’ve read everything, seen specialists for the wilsonesque crap, and tried zinc for it long ago. All normal avenues have been exhausted so I’m trying not-normal stuff. We’ll see what happens!

I’ve a million things on my plate and don’t have time or mind to dig out old labs and measurebate over levels right now. So, I’m afraid I’ll have to leave you foaming at the mouth for more details about my copper oddity. I know it’s an interesting problem at first sight, but searching for answers in published works is an exercise in futility

Look!! There’s someone with white spots on their nails and problems swallowing over there!!! <‘moose runs and ducks behind a tree or something>
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Fri Jan 05, 2018 4:11 pm

would be interesting to know if your zinc status ever got to 120! so far, highest i've been able to find from you on here is 90 for zinc. and nothing re serum copper. out front that is, have not dug thru pms.

update: flipped thru old pms. not finding anything in there from you results-wise for copper or for zinc.

anyway, would take a while to replenish tissue zinc stores, coming from vegan background, i suspect.
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby 81Charger » Fri Jan 05, 2018 4:51 pm

I'm curious where you guys get your blood tested to get these results. I live in Canada and the doctors here don't give me the results, if I ask a question about a certain level they will tell me but that's it really. Just curious if you guys for your results ask or what?

BTW I have ordered clemastine fumarate waiting for it to come and try it out.
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