hey guys as many of you are probably aware, one of our community members is suffering from a fairly exotic disease called leontasis. It has caused his face and body to distort and from what I understand has cost him a great deal of physical pain.
Despite his hardship, he is a very friendly and kind person.
In order to make significant progress in treating my "bipolar disorder, type 1 with psychotic features" I needed to see five doctors. The one that ended up really helping me by experimenting with a number of different drugs until finding ones that worked has my lifelong gratitude. I think that searching for the right practitioner helped me a great deal. my doctor helped me put together a long-term plan for managing my illness over the course of my life.
I would like to help @cryptopie find a doctor who will help to put together a long-term plan for him that results in an easier situation for him overall.
I'm guessing that somewhere there is a physician with significant experience in treating both leontasis and the underlying kidney condition that caused his leontasis. In my discussions with him, he said that a kidney transplant was one possible solution to his problems, but that he had not fully investigated that route for both financial and medical reasons.
I'm just wondering if we as a community can go out and try to find physicans anywhere in the world who are specialized in leontasis or kidney disorders that cause leontosis.
My hope for him is stability. I would like for him to get to a place that is much more comfortable than the place that he is in now. Our man @cryptopie is a fighter and the universe loves a fighter. This is not a person who gives up. This is a man who goes forward every day despite serious trouble and difficulty and goes out and guys think about this he's out there making money on the internet and from what I understand he has a very difficult time moving most of the time.
I have nothing but respect for this.
A while back I asked him if I could make a post soliciting communities help and this is that post. What I'd like for us to do is kind of crowd source intelligence on both leontasis and @cryptopie's specific personal situation.
PS: if you find a doctor who ends up helping him establish a long-term plan there is a long-term reward for you beyond just feeling happy good.
I am buying 10k blurt And I'm going to leave it liquid not powered up and keep in mind that this is a long-term thing, I will want to know that he has benefited from this doctor's advice or treatment. He is the judge of that but it should be a couple of months out I think so that we all know that he's doing better and that point that blurt is yours.
Thank you Sirs @jocobgadikian @d8aco and the rest of the community.
Right now I am under medication of Cinacalcet, it is the drug that I am using which was prescribed to me by my Endocrinologist about three years ago. It is the drug alternative for what I want to happen which is "partial parathyroidectomy" so that parathyroid hormones will get normalized in my body and thus making my bones to heal itself and not to leach out Calcium from it to my body system.
Now I can tell my Endocrinologist to refer me to a Parathyroid surgeon, a kind of surgeon that performs the said Parathyoidectomy. It is done in one of the private hospitals in the capital Manila, Philippines.
But I have to be screened, will have to undergo series of tests before the said surgery but I am a bit certain that I can pass the screening test because I had an appendectomy last January this year, in fact my Appendix had already burst before the surgeon had been able to take it out, I had chills prior and my blood pressure went low and yet the appendectomy got performed and the surgery went well.
Now the Parathyroidectomy is different, it is less invasive, the only complication that I can foresee was my Blood calcium level going so dangerously low so I they have to monitor and manage it closely otherwise it will cause death.
Then there is a factor of the Pandemic and it is not easy to consult a doctor. I have to be scheduled for appointment online, then I have to get some CoViD testing, chest X-ray, and probably additional lab exams because I am also a Dialysis patient. I just wanted to proceed if given the opportunity after the Pandemic. I still wanted to feel better even though I will not be able to restore my former appearance, what I want is to experience a near normal life free from pain , severe appetiteloss, and big hole to my pockets because of the cost of Cinacalcet.
Thank you my friends of the Blurt.
My first Q to @cryptopie : are you taking any calcium supplements?
This may sound insane to someone with a condition producing an excess of Calcium, but Cinacalcet is a calcimimetic (with a protein binding of some 93-97%!!) meaning it is fooling the body into thinking it has calcium, so the thyroid stops over-producing it BUT the rest of the body now has this fake-calcium that doesn't do the actual jobs of real calcium. Hence, sure, try to stop the overproduction, but not strip the body of most of its calcium.
What is your current dose? and have you experimented with lowering it? The half-life is some 40 hrs, so missing one day won't do much to the average level.
@rycharde I use Calcium supplements about 1.2 grams perday every time I would eat because the last Calcium lab tests reveals that I have a lower calcium level in my blood, I also take Vitamin D, about 5,000 IU per day.
OK good. Did the docs not suggest to decrease your dose?
read here: https://www.drugs.com/ppa/cinacalcet.html
in the dosage and professional sections.
Is your iPTH levels something you can test at home?
If costs are an issue, you know that baking soda (NOT baking powder) is usually much cheaper and the same calcium carbonate as many calcium tablets?! lol.
Actually my Endocrinologist wants me to take 2 grams or about four tablets of 500 mg Calcium but this supplement causes me constipation so I jus t have to cut back @rycharde
But I am feeling an improvement with alleviating pains which is why I am thinking that I am doing the right thing i.e. taking Cinacalcet, my phosphate binder "Renvela", Calcium and Vitamin D supplementation.
So I still have much hope that this improvement will continue to maybe causing me to walk again without an aid.
But I still wanted to go for Partial Parathyroidectomy so that I can finally get rid of Cinacalcet from my life so that I can be able to eat normally again and enjoy my foods unlike in these last three years.
Three years - what was life like before this med regime?
You can adjust Ca with food, many calcium-rich foods such as kale and broccoli - and they won't give you constipation!
What is the reason behind the difficulty in walking?
Yes, the Partial Parathyroidectomy looks like the standard solution. I hope they calculate precisely how much to remove.
How much does that op cost?
I know the guy from the other platforms he's really nice and deserves all the help!!
I hope there is some treatment for @cryptopie and yes he is a fighter. I have always seen him as a strong person who fights and smiles always.
this is a great initiative. his recent post to urge cz to list blurt should help him out as well right? https://blurt.blog/blurtpromote/@cryptopie/announcement-a-call-to-action-please-spam-cz-of-binance-to-list-our-blurt-coin-spread-the-word-even-to-your-relatives
It will happen
agree that cz will list blurt at some point, sooner the better that will help @cryptopie cause we r all upvoting his worthy content. when its listed expect 4,5x even 10x easily
Blurt loves @cryptopie
Thank you Sir @empato365
I think " crowd source intelligence on both leontiasis and @cryptopie's specific personal situation." would be really interesting!
I had to research my own so-called immune compromised condition (due to toxic drugs) and know how to get quite rare and expensive books and articles... for free!
The name given to the syndrome is a very old name, which suggests to me that nobody really knows the true nature. Often, names are changed to something more descriptive of the underlying cause.
What is also true is that a deep understanding of a medical condition can yield alternative therapies that can naturally supplement something that the body is not produce.
Just as a simple example, I eat a lot of collagen, not as some vain beauty treatment but because it is a key building block of skin and connecting tissues. Commercial crap is made from fish and has a ton of sweeteners to mask the piscean pong, whereas the source closest to human skin is, unusually, chicken.
Anyway, crowdsourced knowledge would be brilliant!
Task 1
What does this mean:
"Cinacalcet acts as a calcimimetic (i.e., it mimics the action of calcium on tissues) by allosteric activation of the calcium-sensing receptor that is expressed in various human organ tissues." [wiki]
That looks like a good starting point.
Huge red flag already! Typical of pharma drug dealers to mess with humans. Calcium is not just about bones, it is also vital for the nervous system and muscles. Look at the side-effects and they are all neurological, so this calcimimetic is messing with the nervous system.
Are there any alternatives? Why is it needed?
That phrase tells us that Cinacalcet fools the Parathyroid gland that the body/blood has enough Calcium levels already so it need not to pump its hormones to tell my bones to leach out calcium to my blood/body. @rycharde
In effect my bones will not leach out calcium and the reverse will happen, it will then continue patch itself out again to heal. So I just have to take Cinacalcet almost daily and other essential meds like my phosphate binder, calcium and vitamin D.
Unfortunately for me Cinacalcet has no alternative but for me to get that Partial Parathyroidectomy. But I needed to make sure that the pandemic is over before proceeding to that plan/goal of mine @rycharde
That is partially true; like pretty much every drug, there are side-effects, hence the added supplements you're taking. That med also acts on calcium receptors in other organs that have them, such as muscles. I haven't as yet looked into every sensor involved.
As this is also an investigation (have no idea if anybody else is reading) here is an interesting thesis, written in.... 1933!
Ah, but we are so very wise, why would we read ancient history? Because we have also been totally blinded by the drug cartels ;-)
When electricity and later electromagnetism were discovered, one thriving new line of research was in bio-electromagnetism - remember Frankenstein. This then largely disappeared as the drug cartels took over control of medical institutions, research and the whole profession.
I just glanced at that paper and happened to land on a page that describes investigations into the electricity surrounding the functioning (and malfunctioning) of the parathyroid glands. So it could be that the real issue is faulty wiring that causes those glands to be hyper.
This is also precisely the location of the throat chakra. Would do no harm to learn how to meditate and activate that chakra through sound! This isn't new age woo - this is biophysics!
Get well soon @cryptopie
We love you . And i know a real fighter also fight with internal and external war. War because this is also like this. But you will win sure..
I have known @cryptopie for some time. I don't know much about doctors. But I regularly vote for him on all three chains which should be at least of some effect. In a way I feel very happy that I could help someone simply with the power of what I have invested in.
This is the only system I crypto that I have seen to be capable of doing it. I would encourage people to at least drop some votes. It is the least all of us can do as a community and it doesn't even cost us. We are literally getting paid to vote!
Small things can eventually add up :-)