Possible Future Treatment Involves Healing Your Gut

[George1976]

I’ve been wrestling with ET now for 9 years. For the past 3 I’ve had neurological symptoms that make it a bit hard to walk and leaves me feeling dizzy most of the time. During the past 3 years, certain foods initiate almost instant neuropathic tingling and buzzing especially sugars and fermented foods like kefir. Most docs say I’m imagining things and it’s getting to be a bit offensive because I know I’m not. Throughout all this luckily my bloods have remained fairly stable and basically no clear explanation has emerged. So I search the internet every day hoping to figure this out myself.

I’ve found that many diseases are increasingly being seen as originating in the gut, Parkinson’s recently. And I can trace my current issues back to a really strange case of diarrhea. And as I’ve enhanced my gut health over the past 3 years I’ve noticed some small improvements in my QOL. There is a movement (no pun intended) to encourage people to eat 30 different plants every week and I’m going to try it and I encourage everyone on the forum to consider doing the same.

Now the meat of my post is the following link to a report from NIH in the U.S. that suggests the gut could be a target for blood cancer treatment in the hopefully not to distant future. This article is about leukemia but I think the basic idea is a diverse diet can develop good bacteria in your gut that will destroy disease generating bad bacteria. ncbi.nlm.nih.gov/pmc/articl...

Best of luck to all and Merry Christmas!

[Whitehair51]

That's so strange, that you can trace your disease back to diarrhea. I had the same for nearly a year before going to the doctor. Blood results came back with a very high platelet count and all the testing ensued. I was diagnosed with ET.

[George1976 in reply to Whitehair51]

That is strange.

[C2Cnext]

You might be interested in googling (or looking on YouTube) at the work of Professor Tim Spector and the Zoe project.

[KLCTJC]

Gut biome is becoming a thing in the medical community for everything. Listened to a lecture not to long ago at a work function and the dermatologist was discussing this. Not as it relates to our stuff but to inflammatory conditions I treat like psoriasis and other related autoimmune diseases. Will see what the future holds, but I think it all comes down to healthy diet with lots of fruits and veggies and avoiding processed food. This is good advice for everyone. Just wished Kraft Mac and cheese didn’t taste so good! (I have a 5 year old, it is part of my life). Merry Christmas

[Hidden]

George, I’m sorry to hear about the dr’s who comment that you are imagining what you feel. My thoughts are we know our bodies best when you listen to it. I do believe that gut health is very important to how we feel inside and out. What you say makes a lot of sense and working on foods for my gut helps me feel good inside and out. I have PV and see my MPN every 3-4 months. I recommend Tim Spector’s book Food for Life as a reference. Healthy food (with an occasional slip of comfort food) and walking/stretching helps me as well. Thank you for writing your post referring to food and gut health.

[George1976]

Update: I started an anti-candida diet a few weeks ago at the recommendation of a nutritionist. She thinks this will help me heal my gut and also slow or stop leaky gut which is likely introducing toxins into my blood and affecting my nervous system. So far I’ve given up all starchy foods like bread, potatoes and most of all sugar. I lost 7 pounds in a week and the abdominal pain I suffered for most of the last 10 years is almost completely gone. And my reflux is greatly improved as well. Within a few more weeks to months I can reintroduce some of these prohibited foods but for now there is enough variety to satisfy my appetite.

[Spanelmad]

Just found your post ,and like you have gastric issues with my ET.I've started taking symprove probiotics in addition to overhauling my diet.