Do you have a theory as to what may have caused ... - MPN Voice

MPN Voice
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Do you have a theory as to what may have caused your MPN?

I do. A few actually. I think my number one suspicion is I have a Mustang GT, which are known to sound very aggressive and have a beautiful sound when you modify the exhaust. (Probably more of an American thing.) Anyway I modified the exhaust and no, it wasn't legal and it caused me to breathe a lot of gas fumes that you wouldn't smell in a car with ordinary legal exhaust. Got that car when I was 26 and I was diagnosed fairly soon after. I guess it would be important to note that I had a job that was very far away from me and it was a long commute. Basically...a lot of gas fumes...a huge risk for developing a MPN. Don't know if it could happen that quick. I still have the car...but now with legal, safe exhaust.

I think my second guess would be the amount of radiation I've been exposed to. After being a vet tech for 19 years I took many x-rays...thousands. And taking X-rays in animals is different than in humans because in humans you can tell them to sit still and leave the room but when you take x-rays on an animal you stand right there right next to the radiation beam in order to restrain them.

Third theory would be my ex-boyfriend was a crop duster and I was exposed to many pesticides.

Those are my 3 guesses. What are your guesses?

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Stress, virus, all work and no play! Or of course just random.

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No I think stress has a lot to do with Et

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I agree that stress caused my ET!! I also had anxiety at the time as well. My body was in a state of "hay wire" No wonder my cells mutated!! Of course cannot be proven.

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Hi Clubdino,

I'm in agreement with your theory in that something could trigger our MPN. I had a Gastric Bypass in '07 theory number one, so was this major op a cause? who knows.

Number 2 assumed risk was, I stood on a wooden garden bench in the garden to close a stiff window (couldn't manage it from inside) when the slats gave way rotten through and through, my leg took full damage and within hours I was black and blue from my toes to the top of my thighs. Hospital says it is just a bruise that would disappear in time, it took weeks. Never in the life of the family had anyone had an MPN? The establishment say's it is not hereditary, but an uncle died from Leukaemia, so was I at risk through family ties. best wishes and good health to you.

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Interesting story about your accident. It makes you wonder. I do have an aunt with polycythemia. So I probably was at higher risk. But I sure didn't help things.

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Stress anxiety worry caused mine. Being a carer for 28 years 24/7. Never thinking of my own health. Low immune system as well may have caused Et. I worry also maybe the sun caused it. Or living near main roads traffic pollution. Or all of these things. I’ve had sinus infections over ten years. Had sinus deviated septum and sinus surgery. My platelets started rising not long after surgery.

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I was diagnosed 21 years ago and manage it quite well on Hydroxy and aspirin. I was reading where surgery can cause it so I put it down to that as a year before I got diagnosed I had a hip replacement. My Heomo reckons not but it is a coincidence as if I had it a year before it would have shown up on my blood works before the op.

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Fascinating thoughts, I suspected bacteria, viruses or mycoplasma.

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Just age for me... more and more genes mutate as you age and unfortunately one of them caused this. C'est la vie!

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1. 8 years ago I pressed the open door latch on my microwave & the microwave turned on with the door open. Closed door and did the same thing two more times because I'm a bit slow on the uptake.

2. Also used to eat Malathion sprayed cherries when I was little. Was told not to but....

3. Luck of the draw.

4. Having too much fun?

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I'm convinced passive smoking, from conception to finally living in a smoke free home by the age of 25. I've never smoked myself, but sometimes you couldn't see across the room in my parents house and of course my mother smoked while pregnant

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Same here. I used to beg my mom not to smoke near me. I hated it with a passion. Still do, although she knows better than to light up around me now.

Anyway her smoking led to me having many ear infections which led to me having hearing loss starting in high school.

I definitely should add her smoking to the list.

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Cigarette smoke creates benzene which is one of the things that can cause the Jak2 mutation

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I just realized you were the one who posted not too long ago inquiring about MF. Did you ever get more information from your doc?

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No clubdino, I'm non the wiser at the moment. I got forgotten about at my last hospital appointment so didn't get to see a consultant. My next appointment is in September. In the meantime I spoke with my gp who is going to arrange some different blood tests.

Carol.

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Dare I share my suggestion? And a question. How many of you are nail-biters? My husband has PV and has always bitten his nails. I thought nothing of it (apart from nagging him constantly to stop...poor guy) until I walked into an MPN forum and saw a woman (who I later found out has PV too) biting her nails in the exact same way my husband does it. I then began to wonder if people could be picking up some poison by doing this and the thought has remained as a bit of a niggle. Could just be nonsense of course and a desperate attempt to find a reason....

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I've never bitten my nails, but I get where you're coming from with all that bacteria under there!

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Nail biting is supposed to be psychological and of course deep wounds and fears cause it and they are also a strong component in developing cancer.

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You never know. I don't bite my nails though.

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Bought up on a farm with pesticides and my mum also had it so still wonder about the possibility of a hereditary element??

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This is interesting. We are always told there is no hereditary element - if that’s true then the fact you both had it suggests the pesticides may have caused it

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I've always been convinced that my PV was caused by Swine Flu. It was confirmed that I had the H1/N1 Flu virus in 2009 - my nephew was hospitalised with it and had visited me 2 days before he was hospitalised. I was given a course of Tamiflu but it didn't work, so I got the full-blown flu and the symptoms lasted for about 14 days. Before swine flu I was fit and healthy and the only time I ever saw my GP was due to pregnancy.

Since Sept 2009 it's been the opposite. I had a stroke in 2012 and was then diagnosed with PRV. At my second haem visit my consultant looked back over my previous blood tests and said my hct had been rising since 2009 and that the then undiagnosed PRV, had caused the stroke. After I left the appointment, it dawned on me that 2009 was significant because of swine flu.

It could be just a coincidence, but I tend to think not, and that either H1/N1 or Tamiflu caused my PV.

Kari.

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Very I interesting. This also just dawned on me. I also had the swine flu Nov. 2009. It took me about three months to recover completely. Right after that, my mom was started getting really sick and I was running from Austria to Greece to take care of her and my dement dad until she died in Oct 2011. 2010 My daughter was in the middle of changing schools. My routine blood tests for my Hashimoto showed that my thrombocytes were already elevated for no reason in June 2010. They continued to rise steadily until today. An absolute clear pattern. 2nd half of 2010 until October 2011 were horrifically stressful. I often felt like I was numb through and through. I never really recovered. This could have been the trigger, but so many other factors exist. 25 Amalgams since my teens, trauma, also a leg skin injury in 2009, Hashimoto, leaky gut. My histamine intolerance started exactly at the same time as my ET. Doctors say it’s genes. No one in my family had that. I’ve 40 1st cousins. I do believe massive emotional and physical stress were the cause.

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I’m also a Hashi girl and since my ET diagnosis last year, I have been trying to connect the dots. My plt were about 500 when I was diagnosed with Hashimoto in 2010 after a massively stressful year taking care of my demented mom and working - having to fly back and forth from LA to NYC-chronic stress my whole life - My hematologist says there’s no connection with autoimmune and ET - what are your thoughts or findings? My plt steadily rose after my first thyroid storm in 2010. Hmmm...

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There is definitely a connection with AI and ET and every other illness. The IS is connected to everything. According to my Uni. Prof. Haemos, the evidence for this are polarized for and against. The IS is a system of checks and balances, just like our microbio. It keeps up healthy. Illnesses occur when the IS is overloaded (stress causes just as much overload to your IS as any flu) and can no longer cope. When I get sick, my thrombos go up, then they go down again. Since I’ve been on the AIP diet and have reduced inflammation in my body, the PLt went a bit down too and they are now stable for 2 years, whereas, they were increasing by 50-60 yearly before that.

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IS? Intestinal system? Thank you for your professor’s opinion. So interesting!

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Immune System.

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I went vegan about 6 mo ago and my TPO antibodies from Hashimoto dropped from 365 to 255 and ac1 only at 4.7 with lowered cholesterol. Plt about the same though.

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Hi Mpncoda,

Thanks for replying. It is usual that Hashimoto antibodies go up and down a bit each month. If your are eating in an anti-inflammatory way, it will definitely have a positive effect on your health. Make sure you are getting you B vitamins! Being on the AIP Auto immune Paleo for 20 months, and also having changed to bio-identical T4, last October, I was able to reduce my T4 supplementation by 40%. I was on 200mcg daily for almost 20 years!! I’m still in the process of getting my amalgams out. 5 teeth done, 6 to go. Knalls only use organic or self-made cleaning agents and cosmetics. That should help me reduce my supplementation even further by next year. My antibodies went from about 1700 last summer to under 200 in June 2019. All factors that influence the immune system influence the Hashimoto and other antibodies also. If vegan is working for you, stick with it! I personally need meat because I have an inborn anaemia. Organic beef liver once a week helps my RBC count. I can’t eat grains due to intolerances, therefore vegan is impossible for me. All the best! Would love to know how you’re coming along with Hashimoto in a few months. Cheers! Anag.

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Maybe the Tamiflu

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I think from 20 years flying as cabin crew, ionised/cosmic radiation is listed as a cause

Who knows? Something else must trigger it or everyone exposed to these things would develop it?

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My vote goes for stress/burning the candle at both ends. I’ve never been a smoker, drinker and have been a healthy weight all my life. Never had any contact with chemicals, pesticides, fumes or X-rays.

I was guilty of being a workaholic for the best part of 20 years, often working 7 days a week and have always had fear of missing out so gave myself very little down time.

My job became very stressful a few years ago, managing a large team and not being aligned with my senior management gave me a huge amount of stress and anxiety.

The only other things I can think of that might be out if the norm is having very bad chicken pox in my late teens which was very closely followed by my first bout of tonsillitis and constant chest infections. Tonsils removed at 21 but with a 4 hour daily commute to work again I gave myself little time for recovery. Suspected glandular fever, as I was often unwell but never properly tested. Mild adult acne came off the back of this which was treated with antibiotics for years until having roaccutane in my early 30’s. A very toxic drug.

I wonder if we’ll ever find out!?

Sending everyone well wishes x

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I developed coeliac disease at about the same time as PV/ET, both diagnosed within a month and no history of either in my family. I think work stress triggered the coeliac, maybe that triggered the others...?

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You might want to ck for autoimmunity if you have celiac.. not sure if that’s your condition.

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How do you mean, coeliac disease is an autoimmune condition?

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Coeliac is 100% immune! My family and a few friends had a bad leaky gut (precursor to coeliac disease) and we all got on the AutoImmune Paleo AIP diet now for almost 2 years. We gave our intestines a chance to recover and we are doing absolutely wonderfully. Other AI problems are also slowly disappearing. My Hashimoto, my husband‘s psoriasis, my daughter‘s dermatitis and fibromyalgia, my friend‘s horrific IBS, etc. So many other problems I have have left me (depression, incontinence, eczema, fatty liver, weird lymph nodes, unclear whites of eyes are now white, etc. ). When I developed ET, I developed Histamine intolerance (has to do with gut permeability). It went away in about a month after I started the diet cold turkey. My Haemo said almost all his patients have Histamine intolerance. Yes, the gut is the source of almost all diseases, or it is at least a big factor. Hippocrates said that 2,500 years ago. Doctors are constantly trying to reinvent the wheel. He said, „Let food be thy medicine“. Today we are pouring toxicity into ourselves with every thing we eat, breath, tough and hear, instead of keeping ourselves clean and healthy.

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My belief is that my ET comes from my job as a firefighter. As an instructor at our National Fire Service College the fireground exercises I was mainly involved with used burning diesel under pressure, we didn’t use breathing apparatus due to other issues on the risk assessment. We were therefore heavily exposed to the products of the burn and an amount of airborne unburnt diesel spray by ingestion and absorption. Benzene would have been one products.

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Wow! I’m so sorry. There are indeed many Job that involve poisons. For you as an instructor, far more!

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Please, please can I see a picture of your car. I have always dreamt of owning a 1969 mustang, it is number one on my list of what I would buy if I won the lottery.

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Mine is a 2003 Mustang GT. I don't think I can attach a pic in this thread but I will see if I can private message it to you. I'm at work right now but I will be off in a few hours and I will try then. It's my baby!

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Here is a link to a photo. flickr.com/photos/mdmustang...

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I am so jealous. They are such a classic car. The lines of the 69 Mustang just make me drool. Forget the mercs, tile lexus or BMW's. Mustang every time.

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It's definitely a fun car to drive. I love the sound of them about as much as their appearance. You can hear that nasty Mustang growl a mile away.

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Me too!

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Hope you win. I’ve been so near last few weeks. Got 4 numbers in a syndicate years ago.

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Theres one around the corner from my house. I smother it with my batting eyelashes everytkme I take a walk!

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I worked at a chemical factory, ICI, 55 years ago. Then the health regs were a lot different than they are today. If the siren sounded there was a chemical leak and you were told to stay indoors until the all clear siren. I was often sent through the works to different offices as a messenger carrying documents. On return to my office my nylon stockings, which we did wear then, has tiny holes where the chemical burnt through. My father worked there also and he died of a brain tumour at aged 62 in the year 1962. My mother worked as a cleaner also at a nearby chemical works and she acquired dermatitis on her exposed arms which she had for life. Where I live in the north east of England we have the highest numbers of cancer patients in the UK, I personally believe the majority are related to these chemical factories which have been spluttering out contaminated fumes for the last 70 years or so.

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Where in the north east hydroxy? I am from Middlesbrough. Since I have moved here I have had breast cancer, multiple miscarriages and now PV. I have always blamed the additives in food and spray chemicals for around the home. When I was little (now 57) it was so rare to hear of someone with cancer, now they say one in two people will be affected. The only difference from then to now is all the E numbers and colourants in the food we eat.

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Hi, I think you might be right,Hydrox. I worked at ICI at Wilton from 1958 to 1962 and have lived in the area of the chemical works since then. Although I never experienced holes in my nylons, the fact that it was obviously a toxic atmosphere may well have been the cause of cancers. I hadn't realised the NE had the highest cancer rate in the UK. I am 83 now and was only diagnosed with ET JAK2+ a year ago I was diagnosed with breast cancer at almost the same time and have had 3 operations in the past to remove skin cancers. Industry in those years has a lot to answer for.

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I lived at Norton which is very near Billingham ICI chemical industries which is what is was called when I worked there.

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Living close to a small electric sub station. I watched a documentary on TV about cancer clusters large electric pylons and sub stations.

I vowed I wouldn’t buy a house near them. Well we moved onto a brand new housing estate and across the road there was a small sub station.

I think we have to be susceptible to these factors because other people don’t get affected.

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We are like a bucket. Some people detox faster, some slower according to our genes. Those whose genes are slower, have a bucket that fills faster. When it over flows, we get sick, since our system is overloaded. EMFs do a job on the body just like chemicals, additives, GMOs, etc.

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Sorry what are emf’s

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Electro magnetic fields. They are everywhere. It’s important to turn your cell phone off at night or be in flight mode. Wifi off when not in use. Tell your neighbours also. Don’t have extension chords around your bed or in the living room close to you. Get rid of any radio clocks that adjust time automatically. They are the worst killers for your cells. I have a little detector that measures these electrical fields. I had my home professionally tested and move our furniture around. Our heads away from sockets, etc. 5G might become the biggest health Disaster in the history of mankind. The studies on the effects on health of 3G are not yet finished, the I distrust pushed through 4G and now they are pushing 5G with full force. There are no studies started or even planned. Austria where I live has planned to be the first country in Europe to have complete 5G coverage! Brussels has forbidden 5G. There will be a sender/receiver every 20m!

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So, Now we are all bringing our own answers as to why we are all suffering these bloody MPN's, suspected causes so far we have accidents, trauma (me) microwave rays, electricity pylons, chemical factories, sub stations, diesel fuel, coeliac , stress, anxiety, smoking , falling through garden benches (me again bruises) working in aeroplanes, chickenpox, relations, (damn them), brain tumours, the sun, viruses, tonsillitis, nail biting, passive smoking, swine flu, dermatitis, acne, gastric bypass, glandular fever, ear infections,sinus problems,bacteria, last but not least I think it's that member who has the fantastic 1960's Mustang is causing all the trouble.it is obviously all of us with the same problem we are all Green with envy, I can just see him wind in his hair,music playing on his radio. (don't suppose it has a CD player) so clubdino, it's all your fault. lol oh I just remembered another one I eat raw BACON ahhhhhhh. sorry everyone I do have a black sense of humour but that keeps me going. I also have a mantra I say to myself every day.

I might have cancer ,but cancer hasn't got me. Love and best health wishes to everyone.

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First of all my reply was not meant to be NASTY! There is no JEALOUSY about you having a 'special' car ,that's just childish.

I was just amazed at how many of us have a theory on what has caused us to get these horrible illnesses.

It was stated that we all need to keep spirits up as sad people who constantly moan and groan about this condition keep other peoples spirits low and desperate and lead them into a sense that they will never get better.

if you don't have a sense of humour about life in general , there is no hope for anyone's moral.

I also said I have a dark sense of humour which has got me through many heartbreaks of family members being so ill they have died under operations only to be bought back to life by enormously talented surgeons for whom I have great respect and gratitude, my family are all of the same attitude. So my advice to you is read through these letters and contemplate the meaning behind the dialogue and lighten up, it might just be your outlook and poor me attitude that has given you that sad position your in .

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🙄 I don't have a poor me attitude. I was making conversation. I mean that is what this board is for, right?Did you see me complaining about symptoms or anything else...nope. I don't dwell on my disease. I live life. And I am curious about my disease. So get off my grill.

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I really like both of you and your attitudes. I think you both just misunderstood each other! I’ve really found this whole chat great and have found a lot of info that supports many of my own thoughts and theories! I also had a great chuckle at the listing of all our theories. All of them are at least a reason for our illnesses. I always think there are many factors involved and at some point there was a trigger.

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Oh guys, kiss and make up! Think it’s a misunderstanding too. Life’s too short and too full of important things to waste time on aggro, if that’s the right word. It’s a shame to waste precious energy too. Kindest regards Aime xx😻😻

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Eh, I'm not over here brewing about things. I wrote it and moved on and I'm sure she did too. But I do have to say if there is any place in the world that we should be able to talk openly about our feelings and symptoms regarding this disease this is the place.

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Agree totally. Though I think it’s important everyone stays supportive and kind. There have been many times of despair for me (in the past mainly, thank goodness) when if it wasn’t for the kind folk on this forum, I don’t know how I would have got through it all. I just want to help keep it a place where folk can moan, groan, cry if they want to and know they will be made welcome and helped, regardless. Kindest regards Aime x😻😻

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I think it's impotant to note that without hearing a voice or seeing a face behind the words that things can be taken out of context. So dark humor is not always understood or appreciated over the internet.

And as it is I have to hide my symptoms from my family and coworkers sometimes because I know it would just bring them down and honestly it seems most people don't want to know. So this is an important place for me to come to and see that other people are feeling the same. I don't always post but I read a lot of others posts.

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Please don't take what I said in the wrong way. Of course that is what this forum is for getting help and support. I know exactly what you mean about hiding your illness from friends, family and colleagues because you don't want to worry them, you're sure they've heard enough, etc, etc. I appreciate also what you're saying about dark humour. It is difficult to know what's behind the words if you cant see the face.

Any time I see your or any other posts, I'm always happy to help if I can and so are the others who help

each other. What I would hate to see is folk being scared to postfor fear of getting criticised and I'm not saying you did that. Apologies if I've misled you with my words. Kindest regards Aime xx😻😻

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No not at all...I wasn't referencing yout post. I was talking about the post from the person I got in a disagreement with...she said we shouldn't moan and groan about our problems because we bring other people down. And although my original post has nothing to do with moaning and groaning, I do think this should be a safe place to do that if I or anybody else needs to.

And I was just mentioning her dark humor is what caught me the wrong way because I didn't read it as she may have intentioned...I saw it as her attacking me.

Everything's all good. ❤

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That's great, glad we can all talk. Anytime you feel you need more support, I'm happy to help as it's like being on a merry go round, ups and 😻😻downs. Take care Aime x

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Hi mel, how you doing, lovely car you've got, any chance of joyride if I ever come over the pond? Seriously though, I like a few others on here think it could be a combination of things that triggered it, certain chemicals that made people with more suseptible genes is my no1 theory. I worked around chemicals without face protection many years ago, didn't think nothing of it back then. Hope your keeping well. Tina🤗

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Hi Tina. ❤ Of course! I may even let you drive it! I've been doing well. I'm at the doctors now for recheck bloodwork. Life is so much better for me after starting the Cymbalta for the chronic pain. How are you doing? I hope well.

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Yes fine thanks. So busy with the Grandkids lately and slowing losing a bit of weight to boot with the more healthy eating i've been doing. Love a day off though when I get stuck into a nice curry or kebab. Went to Blackpool (popular seaside resort in England) the other week and had a blast and ended the day with good ole fish 'n'chips,another English 'thing'. I sure do love those day's off! Haha. So glad the medication doing the job for the pain.keep well.tina.🤗

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I was a farmer from the age of 23 back in 1974 until retiring in 2017,we used industrial fly spray in the piggeries back in the 70s applied by a bottle fed fan it was called a fly downer. Problem back in those days no one was advised to wear a mask or even had access to one so daily I was breathing in the fly spray. Within a couple of years I started to notice that whenever I got a cut it would take a very long time to stop bleeding, in 1982 I had some dental work done which took 3 days to stop bleeding ( absolute nightmare ) a couple of years after that a vasectomy same scenario. In 1986 started with a really bad headache which carried on for days, my doctor took a blood test and my platelets were 1500and I was diagnosed with ET. Have been on treatment ever since, and on Hydroxycarbamide for the last twenty years . I think although it could never be proved that the problem started back with the flyspray usage. The problem with farming especially as far back as the 1970s we were exposed to so many chemicals, I wouldn’t like to think of what I’ve absorbed over the years

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Also makes you think...if the animals are absorbing the chemicals and then we eat the animals are we then absorbing the chemicals that way, too.

This kind of reminds me of when I was working in oncology veterinary medicine. We had this one chemo drug called Mustargen. It was made with mustard agents which you would see with mustard gas. When you prepare the chemotherapy drug you prepare it under a chemo hood which is basically just a fan that is supposed to suck up the bad particles when you mix the drugs. We did not give Mustargen very often but I do recall the few times that I had to mix that chemotherapy drug I came down with a horrible headache and then I realized that the chemo hood was not doing a very good job of sucking out the bad particles from the air and that I had been inhaling chemotherapy agents for well over a year. Not good. But yeah, bug spray always worries me. If it kills them then it has to have some effect on us, right?

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Growling up in the States, Raid came up with a room fogger. You put it on a table, pushed the button, which sprayed the whole contents into the room and it killed anything that was in there!! We did this and ran out (as the direction s said) for 2-3 hours. But everything we sat on, breathed, and touched had this pesticide on it!we did our bedroom too. We didn’t even have any bugs except for a few ants! My father got dementia, I cancer, my mom liver degeneration, all three of us Hashimoto. My brother was fine. He was almost never home at the time.

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Yeah, I remember those things. One time I had to run through the fog because I forgot my car keys. 💀 lol

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Yes I agree one thing I forgot to mention is that during the period that I was using the flyspray which was over about 3 years I woke up one morning with terrible double vision, so bad I could only see straight by squinting out of the side of my right eye which is how I had to drive to my local doctors as I obviously lived in the middle of nowhere on the farm, He couldn’t find anything wrong with me , it lasted about 2 days but was in the height of summer with more flies and flyspray usage so could have been down to that

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Do you remember the name of the flyspray?

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Afraid not I don’t know what was the favoured chemical agent that would have been used back in those days either

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Two types of thrombocytosis: reactive and essential.

Reactive triggers: inflammation, tissue damage, bleeding (including phlebotomies). Body's natural response to stressors. Would expect anxiety/stress could do the same.

Essential - gene mutation caused by: genetic replication errors, exposure to mutagens, and quite possibly driven by quantum tunneling. Also the very rare familial form of JAK2 mutation that can be inherited.

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My bloods started changing shortly after I had my entire house treated for termites with a chemical called dursban tc. They sprayed every stud space in the entire house and stupid me let them. That chemical used benzene as a solvent, I believe benzene has been proven as a carcinogen. Was not officially diagnosed until many years later but looking back at blood tests for 15 years I noticed that my platelets started going up a couple of years later. ET Jak2+ 69yo.

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Yep. Benzene has a relation with MPNs for sure. If my MPN was Benzene related it would have been a quick response. Within a year I would say.

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Hi Mel

Great question!

My theory; I think there maybe a genetic susceptibility/environmental factor in certain people which triggers a gene mutation. Also, age equals more mutations. I was 60 at diagnosis.

Sometimes I do think of possible environmental factors. that may have contributed to my own MPN, who wouldn’t. Here’s a few things.

1) I did smoke for around eight years in my youth?

2) Prior to diagnosis I had a very stressful period which manifested in severe anxiety?

3) My Father died in his early forties of an unexplained heart attack. This makes me ponder the ‘familial’ question?

Mary

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Hi Mary. I agree there is probably a genetic susceptibility as I do have a aunt with polycythemia. And I do admit I have spent a great deal of my life dealing with stressful situations and dealing with depression.

Something I often think of is when I worked in the veterinary field we would see a great deal of dogs come in with a diagnosis of immune-mediated hemolytic anemia at springtime. It was talked about a lot in the veterinary field and there was a question as to whether even pollen could be contributing to it. It definitely seemed environmental. Of course the other big thing that led to immune-mediated hemolytic anemia was vaccines. I saw it happen so many times that at this point I'm scared to get my dogs their vaccines. Even my parents dog got immune-mediated hemolytic anemia 2 weeks after it's vaccine and had to be euthanized. This is often kept hush-hush in the veterinary community until the dog gets the disease.. .and then it is mentioned "oh by the way Fluffy's vaccines may have caused his fatal disease."

From what I've seen, I believe our immune systems may be way more fragile than we realize and it takes one simple invader to start the destruction.

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My daughter has vaccine damage and many others that I know these days. It’s not really the vaccine itself, but the fact that our bodies (and those or our pets) are dealing with so many environmental toxins, that we are put over the top. Of course some of us are more susceptible, depending on bodies innate ability to detox, stressors on the body both physical and psychological and general toxic load. Same for the let’s. I try to wait a few months longer when I give my dog her next annual vaccine. 1/2 longer for the rabies.

My doctor says there’s absolutely no problem. In Austria, we are supposed to take the tick shot every 3 years as recommended. I paid extra and had myself checked after 13 years. I still had enough protection! I finally got the shot at the 15 year point.

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They have a vaccine in Australia for ticks? I don't believe they have that over here. Well they do for dogs but I don't think for humans.

I do believe the rabies vaccine is important and many other vaccines are important but I just have mixed feelings towards them. And after witnessing what I saw I too started to extend the time between vaccines with my dogs.

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We have the problem that 1/8 ticks carries meningitis! Nasty. We are all vaccinated. We made the mistake of vaccinating our 17 month year old daughter at that time. She was sooo sick for a month. 3 treatment of 3 different antibiotics in a month. We waited 4 months for the booster instead of 1 month. If I knew then, what I know today, she would have NEVER gotten that booster. After the 2nd shot she got rheumatoid arthritis at the age of 2 in the ankles and eyes. She barely made it that she’s not blind today. She had just one tick shot at 13 years and within a month, fibromyalgia appeared. We thought she’d be fine, since we’d gotten rid of her rheumatism with strict diet for 9 years. The family is all on the AIP diet since my diagnosis 20 months ago and she rarely has fibromyalgia now.

animals need rabies vaccines, but again not so often and not is they are not well or old. All vaccines are given to be 100% that we have coverage. Some rare individuals need a refresher after 3 years and some after 20. But they vaccinate all at the 3 year point to be sure and to make mountains of money. I tested my daughter for her hexavac at the age of 10, when she was due for her next one and she had great coverage, except for polio. Therefore, I ordered only polio. The dr. didn’t want to do it. It took 2 months to get it. I insisted. She was fine.

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That's a horrible story. I'm glad your daughter was able to pull through. I have seen many videos on youtube about horrible reactions to vaccines. It's scary.

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I’m not against vaccines. I’m a sceptic. Some are necessary, but when you are weak or the immune system is off, they have to be carefully weighed out. In the US it’s a disaster. I Florida, they just mandated the HPV vaccine for children up to 11!! It’s a monster strong vaccine and these kids haven’t even had sex yet! The normal child in the US get about 87 vaccinations by the time they are 18. I got about 7. I grew up there, born in 1965. It’s all business. I’m against the Measles vaccines also. The massive push for this is unreal. Hardly anyone in the west has died or had major damage since the 40s! They are even mandating chicken pox!! We all had that. My parents, almost everybody. It makes you stronger. Also vaccines are very often made from aborted babies and monkeys. It’s crazy. I watched a 2.5 hour meeting in Washington, led by a senator, to discuss the subject. There were only chosen people there. All of them FOR vaccines. Not a single researcher or doctor who had another opinion. Fixed, by Pharma. Live streaming in internet. I can only shake my head. My brothers kid was massively autistic right after his 7er vaccine, when he was 1.5 years old. They have spent 300,000$ on his training. He is 18 and just received services for his whole life. The cost! Who will foot the bill? There are already 1/46 kids with autism in the US. That number will double every 4 years. I’m a trained teacher for kids with learning disabilities. I know what I’m talking about.

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I lived within 100m of an underground pit fire that burned for several years & this inevitably caused monumental levels of stress . I believe my ET JK2+ was caused by inhalation of toxic carcinogenic fumes over several years .

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Convinced myself that my PV was caused by being in close - i.e. very close - proximity to diesel exhaust fumes for nine years. We had to ensure vehicles, about 20+ of them and ranging in size from small Transit-size up to that of a coach, were run each evening for about an hour in a huge enclosed area with no extractor fans, just a single gated entrance/exit. It absolutely stank but of course, thought little of it at the time. Health and safety would've done their nut if they'd've realised...... Too late now though :-/

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That's crazy. But yeah, when you're young you tend not to think about these things. I wonder how many of your old coworkers had a similar fate as you.

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A known cause of polycythaemia is low levels of oxygen either caused by high altitude or shallow breathing in people with a very sedentary lifestyle .. So I'm fairly sure my polycythaemia was caused by my massive intake of cannabis over about 15 years . This idea was recently reinforced when a young person I know was diagnosed age 21 and i know they were a very heavy cannabis user from about 12 or 13. Any other weed heads out there ?

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I am almost sure that is chronic stress and maybe a little bit of sunbathing

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I am 67. I have JAK2+ ET and was diagnosed 2 years ago. On HU 800 mg. Per day. I was clearly having symptoms in my mid to late forties. I had headaches thought to be migraines and episodic visual dimming in my right eye thought to be migraine related. At 50 because of the visual defects and some occasional right arm tingling a Neurologist that worked at the small hospital where I worked ordered a CT of my head and a tiny infarct (stroke/CVA) was noted. My platelets didn’t become elevated until 2017 when I was referred to Hematology. I developed one of HU’s side effects of Cutaneous (skin)Squamous Cell Carcinoma. Ugh! My father had PV. He was 49 at diagnosis. That was in the early 70’s. He took Busulfan for a while but not more than a few years. He died @ 87 of a stroke. He had developed a upper respiratory infection that developed into pneumonia. They say that our risk of developing a clot is enhanced when our WBC count gets elevated. His was of course, because he was responding to an infection.

So.........genetics, the environment, viral infections and chronic inflammation are all possibilities. I see inflammation most often as the underlying mechanism that can lead to MPN’s and many other disorders. I live in Washington State, USA. (Hoping to attend the MPN meeting in Marylbone, London in November)

I don’t understand the chronic inflammation. I am a Healthcare provider and still don’t understand chronic inflammation. I have looked up recommendations to reduce it. No grains, dairy, potatoes, tomatoes, processed foods and liquor are just some of the things to avoid. (all substances I enjoy). I have a friend who was Seattle’s TOP DOC a few years ago. He told me to look up the “TQI”diet. (To Quiet Inflammation). There is a book “The Abascal Way to Quiet Inflammation + The Abascal Way Cookbook for Health and Weight Loss” that is highly recommended by physicians who are leaders in their fields of Medicine. As I sit here writing I am thinking I should have a look at this book. It’s confusing because we use Prednisone urgently and chronically for inflammation. We use Ibuprofen or Aspirin to treat the inflammation in tissue after injury. This inflammation that causes so many diseases ie. hypothyroidism, autoimmune disorders and cancers must be a separate disease state. I am beginning to feel the icy fingers of helplessness and loss of control about my body. My friends tell me I shouldn’t read articles about MPN’s.

I just tell them that no one loves my body more than I do so I need to be able to ask medically sophisticated questions when I see my Physicians.

There are approximately 80,000 people in the USA that have a MPN. It is categorized here as a “rare” disease. I am realizing how important MPN Voice is. We all need to be loud enough for Hematology to hear us and develop therapies that are less toxic and are more beneficial or even CURATIVE. I am seeing my Hematologist today. I decided to see a MPN Specialist at the Oregon Health and Sciences University in Portland, Oregon. I have an appointment 8/31 with the Director of the MPN Clinic. I always told my patients to see a doctor who loves your disease. I am going to take my own advice. I hope to meet some of you in November. (Especially Maz)

Any thoughts on inflammation?

Pkm52

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I have read a lot that inflammation and MPNs have a relationship. I noticed something interesting the other day. I was dealing with chronic pain off and on for many years and I was finally put on Cymbalta recently which has helped immensly. I'm not sure where the chronic pain originates from as I'm only 42 and it would just feel like I had the flu all the time like my bone, muscles, and joints hurt. Well over the past couple years my blood pressure had also started to spike...even to go as high as 190/90. And my lips, tongue, and fingers were turning blue at times. Well, since I've started the Cymbalta my cyanotic body parts have gone away and my blood pressure the other day was a normal 117/80. The Cymbalta fixed some kind of inflammation in my body and it has had a HUGE impact on my health. I didn't realize all those symptoms were connected somehow but it seems they were.

I do believe there is a connection between diet and inflammation and it would be nice to try a diet in that regards but I don't have much self control when it comes to sugar.

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My loose theories include 1) being near ground zero on 9/11 in 2001 and 2) being at Leeds festival around the same time when the portaloo toilets were set on fire and the air was full of plastic fumes ... but both of these happened long before I was diagnosed (2018) or even when my doctor thinks it began (around 2010 she guessed). More likely perhaps is a high stress life and an anxiety/depressive meltdown around 2006. However there are so many people who have a stressful life and don’t get this mutation so it’s very hard to guess. I do think the general pollution of modern life with unclean air and plastics in our food is likely to play a part too

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My grandmother died of leukaemia, my mother and brother have Idiopathic Thrombocytopenia, but I was told there is no possible connection to my ET jak2 pos.

I worked mainly night shifts for over 30 years in the NHS which really stresses the mind and body. I worked in the centre of Birmingham with all of its industrial and traffic pollution. I have had more x-rays than average.

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HEEEEY your family too? I have JAK2/ASXL1/TET2 + polycythemia vera.

My mom, two of her brothers, one of my cousins, my maternal grandmother, that gma’s sister, and my maternal great grandmother all have/had idiopathic thrombocytopenia. They usually run about 90k, but the women dip down to as low as 50k when pregnant or going through menopause.

I urged my mom to get genetic testing done, per the request of the genetics department at my hospital, but I think she’s just too afraid to hear something bad. 🤷🏻‍♀️ None of the rest of them have had leukemia though, so they’re probably fine.

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My guesses:

1) Passive smoking as a child

2) Inorganic chemicals especially benzene. I studied chemistry in my twenties.

3) X-rays. I also had more than average.

4) Past medication (terbinafine)

3) Shallow breathing in combination with a PFO (Patent Foramen Ovale), a hole in the heart which is sometimes associated with hypoxia. About 1 out of 4 people has a PFO. I think it’s important to focus on deep breathing when having PV. I often wonder how extra oxygen would affect hematocrit even in presence of a mutation.

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This link discusses Impact if Infections on Bone Marrow output, I found it to be very educational

ncbi.nlm.nih.gov/m/pubmed/2...

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Yes, second hand smoke, retro virus (check out HERV) and mercury/amalgam fillings

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