Myelofibrosis

1441 Posts | Page(s): Prev 12...137 138 139 140 141 ...144145 Next 

RE: Myelofibrosis

by Stimme on Fri Oct 26, 2018 07:55 PM

Quote | Reply

On Oct 26, 2018 7:32 PM Lainela wrote:

I mean JAK2, CARL, TET2, ASXL, TP53 - its all mutations found in MF. Each of this mutations means something, it can tell how MF can progress, how fast. So its really important to know wich of all this you have to help doctors find the best medication for you. 

As I understand CARL mutation is the "best" from all mutations found in MF.

Do not be misled, this is a serious disease, it requires proper attention.

As we live in Latvia, our doctors dont offer tests to check wich mutations we have. We will go to Germany to make all necessary tests.

Even if now we feel very good,  are using all this supplements about whom we are talking, I really want to be sure that we are doing all the necesarry things to get out from this. 

There is evidence how diet can imporve overall health and suppress symptoms of MF, as well evidence how doing yoga daly can also suppress symptoms and improve daly life. 

https://www.curetoday.com/articles/investigating-diet-and-nu tritions-effects-on-mpns"" target="_blank" rel="nofollow">https://www.curetoday.com/articles/investigating-diet-and-nu target="_blank" rel="nofollow">https://www.curetoday.com/articles/investigating-diet-and-nu

https://www.raredr.com/conferences/asco2017/yoga-mpns "" target="_blank" rel="nofollow">https://www.raredr.com/conferences/asco2017/yoga-mpns " target="_blank" rel="nofollow">https://www.raredr.com/conferences/asco2017/yoga-mpns

https://www.mdedge.com/fedprac/clinical-edge/summary/hematol ogic-malignancies/online-yoga-intervention-mpn-patients"" target="_blank" rel="nofollow">https://www.mdedge.com/fedprac/clinical-edge/summary/hematol target="_blank" rel="nofollow">https://www.mdedge.com/fedprac/clinical-edge/summary/hematol

Lainela,

I recovered in 1985 from Tonic-Clonic Epilepsy. This was caused by pneumonia from having my tonsils out at 5. My seizures went from one every 3 months to one every 3 years. by giving up the medications at 17 when I went to music college in 1969. Then they stopped entirely in 1985 (No medications - epanutin & phenobarbitone for 16 years!)

I was diagnosed (wrongly) in 1973 with schizophrenia. They forced ECT on me and depixol, the side effects of which are stiffening of the muscles. I came out of the luny bin and went straight back into orchestral playing. I gave up these drugs in 1976 when I found out the side effects from my new GP. I gave the home doctor a rocket! I was put on them again without my knowledge by my mother when I returned home from Edinburgh where I had been playing as a principal violin with the Scottish Chamber Orchestra. I definitely gave them up in 1995 when I moved in here with Anne. I run a successful teaching and performing practice without their pills and without their rash and inappropriate diagnosis!

I was then diagnosed with MF in 2011. Presumably, it had started some time before, possibly from being in Norway at the time of Chernobyl, I cannot be sure. I have taken no medications and my Consultant, a very good doctor, is happy with that - some of my figures have improved, some remain stable. I am only just out of the normal range!

When I was a child I told them the tonsillectomy was wrong I then told them the epilepsy tablets were wrong. I have told many psychiatrists whom I have sat in with a friend that their medications were not the answer. They are now coming round to understanding this!

Don't be fooled Lainela. They sell pills! Go for health instead!

Roger

RE: Myelofibrosis

by Stimme on Sun Oct 28, 2018 01:28 PM

Quote | Reply

On Oct 26, 2018 7:32 PM Lainela wrote:

I mean JAK2, CARL, TET2, ASXL, TP53 - its all mutations found in MF. Each of this mutations means something, it can tell how MF can progress, how fast. So its really important to know wich of all this you have to help doctors find the best medication for you. 

As I understand CARL mutation is the "best" from all mutations found in MF.

Do not be misled, this is a serious disease, it requires proper attention.

As we live in Latvia, our doctors dont offer tests to check wich mutations we have. We will go to Germany to make all necessary tests.

Even if now we feel very good,  are using all this supplements about whom we are talking, I really want to be sure that we are doing all the necesarry things to get out from this. 

There is evidence how diet can imporve overall health and suppress symptoms of MF, as well evidence how doing yoga daly can also suppress symptoms and improve daly life. 

https://www.curetoday.com/articles/investigating-diet-and-nu tritions-effects-on-mpns"" target="_blank" rel="nofollow">https://www.curetoday.com/articles/investigating-diet-and-nu target="_blank" rel="nofollow">https://www.curetoday.com/articles/investigating-diet-and-nu

https://www.raredr.com/conferences/asco2017/yoga-mpns "" target="_blank" rel="nofollow">https://www.raredr.com/conferences/asco2017/yoga-mpns " target="_blank" rel="nofollow">https://www.raredr.com/conferences/asco2017/yoga-mpns

https://www.mdedge.com/fedprac/clinical-edge/summary/hematol ogic-malignancies/online-yoga-intervention-mpn-patients"" target="_blank" rel="nofollow">https://www.mdedge.com/fedprac/clinical-edge/summary/hematol target="_blank" rel="nofollow">https://www.mdedge.com/fedprac/clinical-edge/summary/hematol

It seems my long answer has not been posted. In short, I have been seriously harmed by formal medicine. I have got better from epilepsy (caused by having tonsils out at 5 years) giving up the tablets. A 'diagnosis' of schizophrenia (really a nutrition deficiency) likewise. I was diagnosed in 2011 by chance, with MF. I have taken no medications and am only just outside the normal range. My consultant has said that my chosen natural protocol is 'interesting'. He was particularly interested in the serrapeptase 'eating' up scar tissue. He says he would not prescribe medications for me as I am.

We are all exchanging much healthier protocols here. Health, not disease!

Best wishes,

Roger

RE: Myelofibrosis

by Lainela on Tue Nov 13, 2018 10:28 AM

Quote | Reply

Hi. Any news from using serrapeptase? Do you feel some difference or some improvements? 

In summer I read book about Dr.Hans Nieper from Germany. 

He widely used serrapeptase to his clients. But the information I found is that serrapeptase work for non living tissue but from other side uses this enzyme for ibrocystic breast disease. jus wonderig.

We just recieve our serrapeptase and will start to use.

Here is also some good info about serrapeptase:

Dr.Hans -nieper/" target="_blank" rel="nofollow">http://www.serrapeptase.org/serrapeptase-research/Dr.Hans -ni

http://doctormurray.com/studies-show-serrapeptase-works-bett

https://www.bionity.com/en/encyclopedia/Serrapeptase.html

And wath is your opinion about N Acetylcystein?

I talk with person from Germany with myelofibrosis, he recommended to try NAC in high dose (N Acetylcystein).Say 3 to 4x times the maximum dose of 600 mcg

https://www.ncbi.nlm.nih.gov/pubmed/26538833

RE: Myelofibrosis

by Stimme on Tue Nov 13, 2018 11:30 AM

Quote | Reply

On Nov 13, 2018 10:28 AM Lainela wrote:

Hi. Any news from using serrapeptase? Do you feel some difference or some improvements? 

In summer I read book about Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans Nieper from Germany. 

He widely used serrapeptase to his clients. But the information I found is that serrapeptase work for non living tissue but from other side uses this enzyme for ibrocystic breast disease. jus wonderig.

We just recieve our serrapeptase and will start to use.

Here is also some good info about serrapeptase:

http://www.serrapeptase.org/serrapeptase-research/ " target="_blank" rel="nofollow">http://www.serrapeptase.org/serrapeptase-research/ Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans -nieper/" target="_blank" rel="nofollow">http://www.serrapeptase.org/serrapeptase-research/ " target="_blank" rel="nofollow">http://www.serrapeptase.org/serrapeptase-research/ Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans "" target="_blank" rel="nofollow">http://Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans " target="_blank" rel="nofollow">Dr.Hans -ni

http://doctormurray.com/studies-show-serrapeptase-works-bett er-than-steroids-in-oral-surgery/"" target="_blank" rel="nofollow">http://doctormurray.com/studies-show-serrapeptase-works-bett target="_blank" rel="nofollow">http://doctormurray.com/studies-show-serrapeptase-works-bett

https://www.bionity.com/en/encyclopedia/Serrapeptase.html "" target="_blank" rel="nofollow">https://www.bionity.com/en/encyclopedia/Serrapeptase.html " target="_blank" rel="nofollow">https://www.bionity.com/en/encyclopedia/Serrapeptase.html

And wath is your opinion about N Acetylcystein?

I talk with person from Germany with myelofibrosis, he recommended to try NAC in high dose (N Acetylcystein).Say 3 to 4x times the maximum dose of 600 mcg

https://www.ncbi.nlm.nih.gov/pubmed/26538833 "" target="_blank" rel="nofollow">https://www.ncbi.nlm.nih.gov/pubmed/26538833 " target="_blank" rel="nofollow">https://www.ncbi.nlm.nih.gov/pubmed/26538833

Hi, Lainela,

You have been busy. This looks very interesting! I seem to have more energy with the Serrapeptase. I stopped taking it because my Herbalist said it is best to line the stomach with cooked apple before taking it or it will start to devour you! This then, with all the other supplements, proved an organisational nightmare for me as, obviously, I cannot take it near a meal or when I have just had tea or coffee. (I often drink a cup, forgetting my regime schedule!!)

Also, I had a painful tooth - it felt like an infection. After taking the serrapeptase again the pain and swelling have gone. (It was so uncomfortable one evening that I had two whiskies to sterilize and reduce the pain! But, on reflection, I doubt that would have lasted!)

Mainly, it has given me hope and a new confidence that this could actually dissolve the fibrin causing the swollen spleen, whether it is a cure or not!

I will think about the NAC. I already spend a fair amount on supplements so will ask my consultant when I see him.

Thanks for all this.

Best wishes,

Roger

RE: Myelofibrosis

by Hjf234 on Sat Nov 24, 2018 12:28 PM

Quote | Reply
Hello, Has anyone uses the protocol or found other ways to fully normalize their blood counts for Polycyrhemia Vera? I’m jak2 positive and have been on pegasys dor R years and now stopping to try some natural ways. I’d love to hear what worked for you.

RE: Myelofibrosis

by Sonyberre on Tue Nov 27, 2018 06:48 PM

Quote | Reply

Hello- My father was recently diagnosed with MF. I am curious if anyone knows if CBD oil helps with this? Or any natural supplements that may help at all?

RE: Myelofibrosis

by Stimme on Tue Nov 27, 2018 07:47 PM

Quote | Reply

On Nov 24, 2018 12:28 PM Hjf234 wrote:

Hello, Has anyone uses the protocol or found other ways to fully normalize their blood counts for Polycyrhemia Vera? I’m jak2 positive and have been on pegasys dor R years and now stopping to try some natural ways. I’d love to hear what worked for you.

Hi, I am not sure if any current members have this particular condition. I may be wrong. I have MF and, like other members here am using high dose home-made liposomal vitamin C with curcumin, selenium and a multivitamin, I am also taking Chaga mushroom supplement, reishi with nettle and artichoke tincture, magnesium, occasional B12 and zinc, and, especially, serrapeptase enzyme which 'eats up dead and scar tissue'! 

My platelets have improved and, I believe are now normal. Other figures are still just out of the range, but not excessively so. I don't take any medication. I was diagnosed in 2011 and chose not to take medication! My consultant is not worried. (What has he to be worried about. you might ask!)

Hope this helps.

Best wishes,

Roger

RE: Myelofibrosis

by Stimme on Tue Nov 27, 2018 07:54 PM

Quote | Reply

On Nov 27, 2018 6:48 PM Sonyberre wrote:

Hello- My father was recently diagnosed with MF. I am curious if anyone knows if CBD oil helps with this? Or any natural supplements that may help at all?

Hello, Sonnyberre, Welcome. We are all learning from each other here and passing on new information. For example, Jeff found out about Serrapeptase and its ability to eat up scar tissue! I showed this to my consultant - a good man - he went very quiet and studied it. He hadn't known about it! Do read back. If you read my previous comment, for example, you can see what supplements I, for one, am taking. Others have slightly different protocols but we all seem to agree on vitamin C in high doses and selenium.

I take CBD oil for pain relief. It is claimed to have a lot of curative properties but, to be honest, I don't know if it has curative properties in MF!

Besty wishes,

Roger

RE: Myelofibrosis

by Stimme on Wed Dec 12, 2018 07:20 AM

Quote | Reply

On Oct 26, 2018 7:32 PM Lainela wrote:

I mean JAK2, CARL, TET2, ASXL, TP53 - its all mutations found in MF. Each of this mutations means something, it can tell how MF can progress, how fast. So its really important to know wich of all this you have to help doctors find the best medication for you. 

As I understand CARL mutation is the "best" from all mutations found in MF.

Do not be misled, this is a serious disease, it requires proper attention.

As we live in Latvia, our doctors dont offer tests to check wich mutations we have. We will go to Germany to make all necessary tests.

Even if now we feel very good,  are using all this supplements about whom we are talking, I really want to be sure that we are doing all the necesarry things to get out from this. 

There is evidence how diet can imporve overall health and suppress symptoms of MF, as well evidence how doing yoga daly can also suppress symptoms and improve daly life. 

https://www.curetoday.com/articles/investigating-diet-and-nu tritions-effects-on-mpns"" target="_blank" rel="nofollow">https://www.curetoday.com/articles/investigating-diet-and-nu target="_blank" rel="nofollow">https://www.curetoday.com/articles/investigating-diet-and-nu

https://www.raredr.com/conferences/asco2017/yoga-mpns "" target="_blank" rel="nofollow">https://www.raredr.com/conferences/asco2017/yoga-mpns " target="_blank" rel="nofollow">https://www.raredr.com/conferences/asco2017/yoga-mpns

https://www.mdedge.com/fedprac/clinical-edge/summary/hematol ogic-malignancies/online-yoga-intervention-mpn-patients"" target="_blank" rel="nofollow">https://www.mdedge.com/fedprac/clinical-edge/summary/hematol target="_blank" rel="nofollow">https://www.mdedge.com/fedprac/clinical-edge/summary/hematol

Hello,

Terry just emailed me a news item (link enclosed). We are sad to confirm that Richard Dalt, our dear friend and very good adviser died from a gym accident earlier in July.

http://www.athleticsnorthqld.org.au/ANQnews/ArtMID/10606/Art

I enclose something of his last email to me to confirm the cause which I do so as not to arouse suspicion that his protocol had not worked!:

Hi Roger,
 
As one gets older, we forget that we can’t do what we were capable when younger. What happened was crazy and I nearly died from an accident in the gym. I take athletes to the gym weekly and do press heavy weights. In late November, I was pressing some heavy weights and the bar slipped slightly. In recovering from this, I thought I tore an abdominal muscle. Over the next week I started to feel unwell and went to my doctor and she established I was losing blood. Tests didn’t pick up any issues and I thought maybe my MF is rearing its ugly head.
 
Long story short, I tore my spleen internally and the loss of blood was due to this. Early December I took athletes to the Australian titles and after two weeks, my stomach ballooned to an incredible size and I could hardly walk. I flew home and was heading to the hospital when my spleen burst externally. Whilst this sounds bad and it was, the enlarged spleen compressed my stomach and liver causing my main aorta to expand to at least three times the size and was in danger of causing an aneurism. So after a lengthy stay in hospital and over 20 litres of blood, I have to lie low and not do any activity and this includes getting out of bed without assistance. Nearly five months after the gym accident, I didn’t think I would survive, but I appear to be on the mend, but still have to be careful.

RE: Myelofibrosis

by jeff3 on Thu Dec 13, 2018 06:28 AM

Quote | Reply

Thank you Roger for sharing the full story on Richard's accident and subsequent death. I will miss him and the passion he shared the protocol that has benefited so many.

Jeff  

1441 Posts | Page(s): Prev 12...137 138 139 140 141 ...144145 Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.