I Have An Uncurable Disease

[Bogdar]

Acquired, and not born with.

Hey everybody. After some years of digging into the health & nutrition subject, with Seignalet, Peat, Weston Price, and some others, it was clear in my mind that almost every disease considered "uncurable" by modern medecine was actually quite curable. MS, diabetes type 2 AND type 1, every auto immune conditions, cancers, and so on and so forth.
I had clues to each of these diseases because I knew where to find info on them, people who cured themselves etc. I did not trust anymore the "it's too late you can't u-turn" from conventionnal medecine.

However... At 20 yo, I was diagnosed with essential thrombocytemia. My case is a sudden gene mutation, deletion of calreticuline, which forces my bone marrow to work 300% and produce way too much platelets.
The risk is death. Or maybe worse, loosing organs, such as extremities, eyes, parts in the brain etc. The condition is unstoppable and doctors just tell they have never seen anyone being cured from it, with or without treatment. The disease just develops more and more over time.

Thing is, my platelets were at 1000k (normal range 150-450k). I could take aspirin to thin my blood and stay healthy. However, in only 3 months they went up to 1350k. At this point, platelets become un-functional, so aspirin worsen my blood, and I'm forced to take another treatment. Since I'll have this condition all life long, a such short time worsening is also pretty scary.

Treatments... I have 2 choices. First one is some chemotherapy (not for some time, until the end). I won't go into side effects, there are so many, especially accumulating with age.
Second one is "interferon pegasys". Seems less violent but still is. Effects are platelets diminishing, but also depression, tiredness, sometimes suicidal thoughts, flu-like symptoms, dizziness, etc etc. For a lifetime.

Well. I'm 20yo, thought I had tools to at least mitigate most of our generation diseases, but I end up with a rare incurable conditions I'll have to deal my whole life. I contacted Peat, he told me to control prolactin & vitamin D to prevent further proliferation of my platelets. There doesn't seem to be any way back.
If anyone else is affected by this condition, and/or take interferon pegasys, I would love to talk to you.
Thank you

 

[Dolomite]

I don’t know anything about your disease but would platelet apheresis help like therapeutic phlebotomy does for people with too many red blood cells?

 

[Bogdar]

I don’t know anything about your disease but would platelet apheresis help like therapeutic phlebotomy does for people with too many red blood cells?

Like for people with too much iron ? I asked my doctor about it, the answer was negative. I don't remember exactly why, I think it was because platelets would regenerate too fast, making it inneficient.

 

[Diokine]

Was there a test done to confirm calreticulin mutation?

 

[Bogdar]

Was there a test done to confirm calreticulin mutation?

Yes, diagnostic has been done with bone biopsy. There are 2 main mutations, one is JAK2 (the most "dangerous" one), the other is calreticulin. For more details, IIRC 14% of my megacaryocytes are mutated.

 

[Amazoniac]

Have you considered whole-body (infrared) hyperthermia with methylene blue?
- Hyperthermia And Immunity In "Spontaneous" Tumor Regression

It has risks, so it's safer supervised. Some of these therapies require a fever-like state for long periods, not sure if it's intervaled, but it's easy to realize that it can go bad, especially if the person is debilitated.
- Sudden Death during Sauna Bathing in Finland (references)

 

[Bogdar]

Have you considered whole-body (infrared) hyperthermia with methylene blue?
- Hyperthermia And Immunity In "Spontaneous" Tumor Regression

It has risks, so it's safer supervised. Some of these therapies require a fever-like state for long periods, not sure if it's intervaled, but it's easy to realize that it can go bad, especially if the person is debilitated.
- Sudden Death during Sauna Bathing in Finland (references)

Of course I did not consider it lol. Why are you talking about infrared light & methylene blue ? To rocket up my temperature and simulate a fever as mentionned in your thread ?

I heard about these cases of "spontaneous remission" after infection/flu. I actually even already mentionned it to my doctor. My condition is not exactly a tumor, I'm not qualified to understand why but it is just called a "myeloproliferative condition". I don't understand exactly the nuances. That being said, he mentionned that interferon pegasys - the treatment I opted for - was doing something similar. I'm not sure if they totally understand its action, but it induces a flu state with cited symptoms - dizziness, muscle cramps, tiredness, irritability... ( Interferon: Long-Term Side Effects )
So it might be what it is already doing. However, if I stop the treatment, I'm back to high platelet mode. So, it sure does not provoke a "spontaneous" cure as your method might be able to do with tumors. The question is; is it different enough from my treatment to maybe be able to induce a spontaneous remission ?

Since I'll already be on heavy drug, I think I will need to be convinced in order to try something with further risks & such preparations.
Thank you.

 

[Hugh Johnson]

Can you donate platelets? In some countries you can even make money from that.

 

[Hugh Johnson]

https://www.google.com/amp/s/www.re...uction_from_Human_Megakaryocytes_in_Vitro/amp

Lactoferrin might be worth a try.

 

[methylenewhite]

Having unhealthy lifestyle seems to be the way.

 

[Soren]

Going back to Dr Peats mention about vitmain D. I did find a few studies showing a correlation between essential thrombocytemia as well as other platelet related diseases and low levels of vitamin d.

Vitamin D insufficiency in myeloproliferative neoplasms and myelodysplastic syndromes: clinical correlates and prognostic studies
Vitamin D insufficiency in myeloproliferative neoplasms and myelodysplastic syndromes: clinical correlates and prognostic studies. - PubMed - NCBI

Inverse relationship between vitamin D levels and platelet indices in Korean adults.
Inverse relationship between vitamin D levels and platelet indices in Korean adults. - PubMed - NCBI

There is a vitmain D protocol that has some great success in the treating of Multiple scerolsis as well as other auto-immune conditions. Under supervision of a doctor the patient takes high doses of vitamin d. You can find more information about it here as well as doctors who offer the treatment.

https://www.coimbraprotocol.com/

There Facebook page also has useful information and testimonials.

Best of luck to you don't give up. Please God you find some solution.

 

[aussiebaldguy]

Try traditional chinese medicine tcm
if western medicine has no cure

 

[Amazoniac]

Of course I did not consider it lol. Why are you talking about infrared light & methylene blue ? To rocket up my temperature and simulate a fever as mentionned in your thread ?

I heard about these cases of "spontaneous remission" after infection/flu. I actually even already mentionned it to my doctor. My condition is not exactly a tumor, I'm not qualified to understand why but it is just called a "myeloproliferative condition". I don't understand exactly the nuances. That being said, he mentionned that interferon pegasys - the treatment I opted for - was doing something similar. I'm not sure if they totally understand its action, but it induces a flu state with cited symptoms - dizziness, muscle cramps, tiredness, irritability... ( Interferon: Long-Term Side Effects )
So it might be what it is already doing. However, if I stop the treatment, I'm back to high platelet mode. So, it sure does not provoke a "spontaneous" cure as your method might be able to do with tumors. The question is; is it different enough from my treatment to maybe be able to induce a spontaneous remission ?

Since I'll already be on heavy drug, I think I will need to be convinced in order to try something with further risks & such preparations.
Thank you.

It's far from guaranteed, but since hyperthermia boosts immunity as a whole, it wouldn't be surprising if it worked regardless if it's cancerous or not. Even though it has been used in a variety of issues involving bone marrow, your case might require getting them under relative control first to avoid untoward complications; if you produce more platelets than normal for a given period, elimination from blood combined with other managements could provide a gap of couple of days. Just leaving an option for you to investigate further if it serves your case.

- Myeloproliferative Neoplasms: Molecular Pathophysiology, Essential Clinical Understanding, and Treatment Strategies
- How I treat essential thrombocythemia
- Hyperthermia induces platelet apoptosis and glycoprotein Ibα ectodomain shedding
- The Effects of Hyperthermia On Platelet Physiology

 

[Doublecapricorn]

This is against Ray's teachings but I highly recommend to avoid all sources of Vitamin A. Please read the three free ebooks on www.ggenereux.blog and draw your own conclusions.

 

[Nemo]

At 20 yo, I was diagnosed with essential thrombocytemia. My case is a sudden gene mutation, deletion of calreticuline, which forces my bone marrow to work 300% and produce way too much platelets.

Bogdar, while most specialists only see a few cases of your disorder in a lifetime, MD Anderson sees hundreds a year and has a special research wing with clinical trials specifically devoted to your condition. See: Hanns A. Pielenz Clinical Research Center for Myeloproliferative Neoplasia

I'd move heaven and earth to go see them.

If it were me personally with this condition, or a loved one, I'd also try the treatment described here: https://www.mycancerstory.rocks/sin...-your-life-how-to-change-your-own-perspective

I don't know whether your condition is technically a cancer, but it's the result of cell growth that exceeds and is uncoordinated with that of normal tissue. The way the treatment at the mycancerstory link works is by slowing glucose uptake to cells. Cells growing faster than normal tissue will be disproportionately affected.

You will see through the link that the treatment is curing all kinds of cancers and neoplasms and it's already had safety trials for humans. You take a small dose three days in a row, then stop taking for 4 days. You can buy the treatment over the counter at any pet store for a cost of roughly $8 a week. Repeat until cured (it generally takes a few months). It looks like you can take it safely forever with this on/off method with no side effects. Some people have seen elevated liver enzymes taking a triple dosage for several days in a row or taking it 7 days a week.

This treatment is technically a form of chemotherapy (works exactly as chemotherapy does, but without the side effects). Since your doctor mentioned chemo as one of your options, this really ought to work.

If it were me personally, I'd try the mycancerstory treatment first, but I have a very high tolerance for experimenting on myself and a very low tolerance for medical procedures, doctors, scans, and all the rest of it. The guy at mycancerstory did both the alternative treatment and conventional treatment together.

And of course support your immune system and metabolism with Dr. Peat's pro-metabolic recommendations.

 

[Bogdar]

Can you donate platelets? In some countries you can even make money from that.

I can give it but in my country I can't sell it lol. I would be rich in no time. Industries hate him, this man discovered how to exploit his own bone marrow to do overtime work.
But once again, my doctor told me that giving/loosing blood was not a good way to prevent a hemoragic/thrombotic event, since they would come back to their original values too early.

https://www.google.com/amp/s/www.re...uction_from_Human_Megakaryocytes_in_Vitro/amp

Lactoferrin might be worth a try.

Thank you ! Combining this with good range vitamin D, prolactin and stuff could be some good "safe practices" to try out. I read lactoferrin was present in milk, especially in human milk. Also, it was de-activated by thermal process above 60°C. So raw and/or micro filtered milk would be mandatory. Do you know of any other food containing lactoferrin ?
Also, do you know how much milk that would translate into to reach the same amounts cited in the study ? (I'm unsure about their µg/ml -of what ?- measurement.)

Having unhealthy lifestyle seems to be the way.

What do you mean ?

Going back to Dr Peats mention about vitmain D. I did find a few studies showing a correlation between essential thrombocytemia as well as other platelet related diseases and low levels of vitamin d.

Vitamin D insufficiency in myeloproliferative neoplasms and myelodysplastic syndromes: clinical correlates and prognostic studies
Vitamin D insufficiency in myeloproliferative neoplasms and myelodysplastic syndromes: clinical correlates and prognostic studies. - PubMed - NCBI

Inverse relationship between vitamin D levels and platelet indices in Korean adults.
Inverse relationship between vitamin D levels and platelet indices in Korean adults. - PubMed - NCBI

There is a vitmain D protocol that has some great success in the treating of Multiple scerolsis as well as other auto-immune conditions. Under supervision of a doctor the patient takes high doses of vitamin d. You can find more information about it here as well as doctors who offer the treatment.

https://www.coimbraprotocol.com/

There Facebook page also has useful information and testimonials.

Best of luck to you don't give up. Please God you find some solution.

Thank you ! Raymond Peat actually linked me these same 2 studies, plus A non-functioning vitamin D receptor predisposes to leukaemoid reactions in mice. - PubMed - NCBI .
I added the protocol on my notes. I randomly read a testimony for MS where she would take interferon and it seemed so hard to live with lol. I have 10 days left.
I also did vitamin D bloodtests and I was at 20 (ref range 30-60) 2 months ago. I sunbathed a lot and will make sure I get back to some 40-50 values. I keep this protocol for a later tool.
Thanks for your support. :)

 

[Bogdar]

Try traditional chinese medicine tcm
if western medicine has no cure

Any advices / guides ? I never dug into chinese medicine.

It's far from guaranteed, but since hyperthermia boosts immunity as a whole, it wouldn't be surprising if it worked regardless if it's cancerous or not. Even though it has been used in a variety of issues involving bone marrow, your case might require getting them under relative control first to avoid untoward complications; if you produce more platelets than normal for a given period, elimination from blood combined with other managements could provide a gap of couple of days. Just leaving an option for you to investigate further if it serves your case.

- Myeloproliferative Neoplasms: Molecular Pathophysiology, Essential Clinical Understanding, and Treatment Strategies
- How I treat essential thrombocythemia
- Hyperthermia induces platelet apoptosis and glycoprotein Ibα ectodomain shedding
- The Effects of Hyperthermia On Platelet Physiology

Wow. That's why I find it tough to do research on my own. We often encounter frightful information.
First it's so bad that my calreticulin mutation is never cited. Second, the "high risk" patients are considered either 60+ yo OR 1500+ platelets. Considering I went from 1000 to 1350 in no time it scares me off lol.
The 2 last links sound good. Killing my platelet. However, it mentions an increase in hemorrhagic risks. Problem is my platelets are so overnumbered they become less functional and it actually increases my hemmorrhagic risks (increase thrombotic risks up until ~1000k, and increase hemorrhagic above). So, good idea might look into it with precautions.

Many thanks.

This is against Ray's teachings but I highly recommend to avoid all sources of Vitamin A. Please read the three free ebooks on www.ggenereux.blog and draw your own conclusions.

Does it have anything to do with my conditions ? I mean, did he (Grant Genereux) ever mention any case of ET (my condition) improving while avoiding vitamin A ? I don't think I'll ever avoid vitamin A. I am careful not to take too much of it, and not to supplement it since we already have a supplement in food form called liver; with which I had extremely good experiences, mental clarity++, energy ++ etc.

Bogdar, while most specialists only see a few cases of your disorder in a lifetime, MD Anderson sees hundreds a year and has a special research wing with clinical trials specifically devoted to your condition. See: Hanns A. Pielenz Clinical Research Center for Myeloproliferative Neoplasia

I'd move heaven and earth to go see them.

If it were me personally with this condition, or a loved one, I'd also try the treatment described here: https://www.mycancerstory.rocks/sin...-your-life-how-to-change-your-own-perspective

I don't know whether your condition is technically a cancer, but it's the result of cell growth that exceeds and is uncoordinated with that of normal tissue. The way the treatment at the mycancerstory link works is by slowing glucose uptake to cells. Cells growing faster than normal tissue will be disproportionately affected.

You will see through the link that the treatment is curing all kinds of cancers and neoplasms and it's already had safety trials for humans. You take a small dose three days in a row, then stop taking for 4 days. You can buy the treatment over the counter at any pet store for a cost of roughly $8 a week. Repeat until cured (it generally takes a few months). It looks like you can take it safely forever with this on/off method with no side effects. Some people have seen elevated liver enzymes taking a triple dosage for several days in a row or taking it 7 days a week.

This treatment is technically a form of chemotherapy (works exactly as chemotherapy does, but without the side effects). Since your doctor mentioned chemo as one of your options, this really ought to work.

If it were me personally, I'd try the mycancerstory treatment first, but I have a very high tolerance for experimenting on myself and a very low tolerance for medical procedures, doctors, scans, and all the rest of it. The guy at mycancerstory did both the alternative treatment and conventional treatment together.

And of course support your immune system and metabolism with Dr. Peat's pro-metabolic recommendations.

Wow thanks ! Couldn't expect more than a clinic dedicated to my type of disease.
I also put these protocols on some notes.
I do also hate conventional medical procedures, I had more bad experiences than good. I even discovered my ET randomly when checking for digestion issues, which have not changed yet 9 months later because poor diagnostics and stuff. However, ET was a totally foreign territory and I'm not sure what else I can do. At first I was up to let it go and continue baby aspirin for years... But it evolved in a matter of months, by 40%. I'm in a hurry now.


Thank you, I'll take some time to browse through your links of you all.

 

[Kelj]

Hematological abnormalities in severe anorexia nervosa. - PubMed - NCBI

Hematological abnormalities in severe anorexia nervosa.
Sabel AL, et al. Ann Hematol. 2013.
Show full citation

"patients developed thrombocytosis (platelets > 400 k/μL) during their hospitalization. Eighty-nine percent of patients had resolved their neutropenia by discharge. Marked hematologic deficiencies are often present in patients with severe anorexia nervosa, generally attributed to starvation-mediated gelatinous marrow transformation which resolves with proper nutritional rehabilitation. Improved provider awareness of this association may reduce unnecessary testing and costly treatment interventions."

 

[Hugh Johnson]

I can give it but in my country I can't sell it lol. I would be rich in no time. Industries hate him, this man discovered how to exploit his own bone marrow to do overtime work.
But once again, my doctor told me that giving/loosing blood was not a good way to prevent a hemoragic/thrombotic event, since they would come back to their original values too early.


Thank you ! Combining this with good range vitamin D, prolactin and stuff could be some good "safe practices" to try out. I read lactoferrin was present in milk, especially in human milk. Also, it was de-activated by thermal process above 60°C. So raw and/or micro filtered milk would be mandatory. Do you know of any other food containing lactoferrin ?
Also, do you know how much milk that would translate into to reach the same amounts cited in the study ? (I'm unsure about their µg/ml -of what ?- measurement.)


What do you mean ?


Thank you ! Raymond Peat actually linked me these same 2 studies, plus A non-functioning vitamin D receptor predisposes to leukaemoid reactions in mice. - PubMed - NCBI .
I added the protocol on my notes. I randomly read a testimony for MS where she would take interferon and it seemed so hard to live with lol. I have 10 days left.
I also did vitamin D bloodtests and I was at 20 (ref range 30-60) 2 months ago. I sunbathed a lot and will make sure I get back to some 40-50 values. I keep this protocol for a later tool.
Thanks for your support. :)

I think you can buy lactoferrin pills.

Also you can donate platelets without donating blood. They separate the platelets and put blood back in. You might look into making money while on holiday or something.