Has anyone on this forum who has jak2+ et or pv able to see significant improvement in blood levels by taking only supplements and natural herbs. I started out as having severe paresthesia in both legs, abdominal discomfort and all the other classic symptoms of MPN. I did ct of the abdomen and everything was normal except for fecal impaction. My platelets were in the mid 500s, all other blood parameters were normal until about 3months after my baseline test I noticed a rapid increase in my H&H-it went as high as 16plus and 51plus and platelets went as high as 650. My baseline H&H was 14.8 and 44.8 respectively. According to WHO guidelines I would now progress from ET to PV. However, since start taking herbs and supplements my platelets yesterday was 490. H&H is 15.1 and 45.7. I have notices a steady decline in the mentioned cell lines over several months. Interestingly my WBC and RBC are within normal limits and haven't change significantly from basline. I had a baseline BMB done in2019 October and showed no fibrotic cells, however it did confirm ET jak2+ diagnosis. Please note that eventhough my numbers have improved I still have paresthesia, hoping it will go away eventually. Anyone who can give their thoughts and experience on this will be greatly appreciated.
Improvement in lab results with natural products - MPN Voice
Improvement in lab results with natural products
There is some evidence that Curcumin can induce apoptosis via action in the JAK-STAT pathway. This is not a replicated finding and curcumin rarely is noted to have significant impact on hematopoiesis. Curcumin does, however, have significant benefit on inflammatory response that is also driven by the JAK2 mutation. Another anti-inflammatory agent with promise is N-Acetylcysteine. There is possible benefit to this supplement in reducing the levels of inflammatory cytokines such as TNF-alpha.
I have PV - JAK2 v617f - mutant allele burden = 25%. I have a relative indolent form of PV with both thrombocytosis and erythrocytosis. Despite 30+ years with a MPN, I have never had a single incident of thrombosis and only mild splenomegaly. I have actually had more trouble with secondary inflammatory conditions, including: GERD, osteoarthritis, plantar fasciitis, insomnia, and eczema. Curcumin has helped with this more than any NSAID ever did. In consultation with an Integrative Medicine doc, I have added SPM Active and L-Glutathione to my anti-inflammatory regimen. I am not using these agent in hope of reducing hematopoiesis, but would be happy if it did.
Please let us know what you are using and how it works out for you.
Hello hunter. I appreciate your response. I do use curcumin too. I was diagnosed last year October with ET jak2+ at the age of 38. As you can see I'm relatively new to this journey and I'm still learning to live with this condition. At first I was terrified of having a stroke or a DVT and the thought would haunt me constantly. My fears are as not as debilitating as they were and now I'm more eager to expirement with my body to see what works for me rather than just watch and wait as my hematologist suggested. I was keen to see if anyone had taken a holistic approach with natural herbs and supplements and had seen any positive changes over and extended period in their numbers. I outline my results in my previous post, I was hoping to see if anyone had similar results or experience.
Hi markgenious1981, I'm in a similar boat as you at the moment in that I was recently diagnosed in March 2020 ET JAK2 positive on no meds other than aspirin and watch and wait. I however want to do whatever I can now to improve things. Are you only taking Curcumin? Or are you taking anything else? I am currently doing three things. I am on an anti-inflammatory diet, no processed food clean eating. I run and I take supplements in the hope to make a difference, improve my overall health and condition outlook. I currently take Curcumin, Oregano oil, ginger, garlic, Super Canosine, Q10, Boron, gut health tablet and Apple Cider Vinegar. All of these I am taking for their potential anti inflammatory effect / progression - if that is even possible. The only one I'm taking to help with platlet count is the Q10 from a recent study posted about here. My platelets came down in my last check from 638 to 544. However, it may have been because I had a bad cold at the 638 count, I was stressed due to the recent diagnosis or it could just have been the normal up and down of platelets. So I may go back in three months and my platelets have gone up again. I am considering PQQ next. Thanks Hunter for ur input as always too. 
Good health is good health especially when you have a MPN. Some of the most important things to do from a holistic approach is to minimize risk throughout your entire body. Good cardiovascular health, conditioning, healthy weight control, and nutrition are all more important than ever. I consult with an Integrative Medicine (Functional Medicine) Specialist to help look at this as well as to look at the impact complementary health intervention can have as they interface with Western medicine in my body. I require all of my docs to stay aware of me a a whole person/body and not just a collection of parts. I go to appointments with a written agenda that always includes a review of all health issues and the following header:
Treatment goals:
1. Extend quality of life.
2. Extend length of life (only when QOL intact)
1.Philosophically – better to get less tx benefit and preserve QOL with any tx
2.My medical POAs have very specific instructions regarding my care and when to d/c all tx.
Treatment Approach
1.Combine Western Medicine with alternative/complimentary healing methods
2.Rely on evidence-based practices.
3.Weigh the benefits and the risks of any treatment option.
a.Don’t make assumptions. If something can help you, it can also hurt you
b.Pay attention to how treatment approaches, medication/supplements interact
4.Look for underlying cause and links between medical issues.
5.Standard tx protocols are not always the correct approach for any specific person. Individualize tx based on individual medical profile.
6.Treat the whole person, not just the parts.
7.Use MPN-Expert Consultation to inform MPN tx & on other tx needs (e.g. surgery)
Wishing you all the best on your journey.
A healthy diet (anti inflammatory diet which is effectively Med but minimal sugar/refined/processed foods) and plenty of of exercise are probably best way forward.
Herbs, spices and anti oxidants such as flax seed and cacao powder
Fish oil supplement which appears to help alleviate dry eyes.
Turmeric gives me nose bleeds
Low dose Vit D
Low dose N-Acetylene (currently being trialled in MPN dietary study in USA).
Milk thistle
Probiotics - I think good gut bacteria may gain increasing medical attention
My pet theory is that the lower your inflammation the better Pegasys works. No logic for this other than I know that having the TET2 mutation in addition to JAK2 reduces Pegasys efficacy by blocking the pathways Peg uses with inflammation. Ditto re smokers.
I have TET2 and JAK2, both were c. 80% two years ago. My JAK2 is now 11%.
My inflammatory markers (CRP and LDH) are both ultra low.
Supplements are an interesting (although mostly unproven) option but IMO the two most important things to do are to avoid sugar and take plenty of exercise
Thank you for posting. I am sure any answers will be of help to all of us. Wonderful that you are having a good effect on your condition.
Hi, I’d love to know what herbs you’ve been taking. I do hope you bloods continue to show improvement.
I was told on this site that red palm oil lowered his wife’s platelets.
I’ve been taken it for four weeks and my platelets have dropped 428-370.
I fear my body will retaliate.
Too early to tell I’ve another blood test in 3 weeks time. ( et CALR )
Sorry but can you clarify - your platelets dropped 428-328 or down to and if the latter where did they start?
When first diagnosed 800+
been trying to control them for most of last 4 years. Meds dose has gone up to counteract rise in platelets. I’ve been steady since taking red palm oil. Don’t know if it’s me, meds or oil x
paresthesia may be something different but I had a pinched nerve in my neck that causes those sensations. Had to have a fusion of vertebrae’s 4-5 and 6-7. That was about 10 years ago. Got another pinched nerve again... doc says probably 2. Was a sign language interpreter for over 20 years for college and think that’s when I damaged the neck nerves. It started up again when my husband was diagnosed with brain cancer. Stress !! Exercise and relaxation techniques and ice.... 🥴
What supplements are you using and in what amount?
Good to hear such positive response to natural remedies.
I have JAK 2 positive. Platelets are 800 at moment , but I feel fine . All Other bloods normal
I take fish oils , curcumin liquid capsules, vit d plus , reishi mushroom powder and vit c . Also daily low dose aspirin .
While I feel so good reluctant to take meds offered by Consultant .
Consultant said she recommends I take meds if platelets rise to 1500 .
I have regular blood tests . Every month or two
Anti inflammatory diet is good
Keep up the good work
That’s great. Can I ask what kind of herbs and supplements you are taking?
Thank you for all the replies. As we all know cancer is very complex and resistant to cell death, therefore a hypothetical thought would be to attack it through a multifaceted manner-meaning changing our bad habits to good ones. I could name a plethora of good and bad habits but as adults we should be knowledgeable of what is good and bad for our minds and bodies.
In my opinion killing cancer cells with one herb or supplement wont work. Using a cocktail of herbs and supplements to exert multiple cellular damage to cancer cells is the best approach along with other holistic interventions.
I know each individual here may have their own spiritual beliefs but we can't deny there'sonly one Creator. Me personally is of the Christian faith, and I do pray for guidance and supernatural intervention and have had my own spiritual revelations through the Creator.
Ofcourse herbs can be as toxic to the body as any conventional meds so caution is important.
I listen to my body, its always communicating with me. I pay key attention to WBC and RBC . Detox and protecting the liver and kidneys is vital. Anyone who choose to use any of the herbs I mentioned and see positive results please let the forum knows and give the praise to our Creator.
I will continue to update the forum of my outcome whether positive or negative. God bless everyone.
At the moment I take a cocktail of vit D, moringa, garlic, ginger, black seed oil, iodine, cat's claw, grape see oil, Rosemary, curcumin, aloevera, inositol,cayenne pepper, horny goat weed and astragalus.
Just to clear myself, I'm not a medical expert, and I'm not giving advice to anyone. I just chose to share my slice of cake with the family. Peace out.
Hi, so I am quite a believer in natural remedies and a spiritual outlook is equally important. Do you take your cocktail as a one time shot of all ingredients listed or do you divide it up into 2 or 3 doses? Any info would be super helpful! Thanks!
All,
Suppressing inflammation has been suggested to be an important venue to prevent progression of MPNs. Fleishman AG published on this topic repeatedly. Based on animal studies she has proposed N-Acetyl-cysteine as a potentially effective agent for MPN. Other inflammation -suppressing agents that may potentially be helpful are Nicotinamide Riboside (Niagen), Urolithin A, Spermidine, and Metformin. Urolithin A will become available in the US as a supplement within the next few months. It is a substance that is produced in our gut (by some , not all ) after ingestion of e.g. pomegranate and walnuts. Niagen and Spermidine (SpermidineLife) are commercially available as supplements. Metformin is n (anti-diabetic) prescription drug. All of these agents have strongly anti-inflammatory properties and for some of these suppression of TNFalpha and IL-6 has been demonstrated. It would be very interesting to see these agents being studied in controlled clinical trials. Before committing to any of these agents please discuss with a doctor who is familiar with the cutting edge research. Unfortunately, most normal practicioners/ oncologists are not familiar with these substances (with the exception of Metformin) and there is a lack of much needed clinical trials.
I should add, I have been diagnosed with PV 3 years ago, My JAK2V617F allelic frequency has been between 12-18%. I take Aspirin, Metformin (I don't have diabetes), and Niagen (150-300mg per day, depending on my energy level). In three years I needed a total of only 5 phlebotomies (at an HCT of 45 or greater). The longest time period between phlebotomies has been 8 months. Perhaps I have been lucky so far.
Full blown PV now
SO MY JOURNEY BEGINS
Outcomes of JAK2 V617F-positive polycythemia vera and ET according to the JAK2 V617F allele burden
ET or PV with just a slight increase in red blood cells. Is that possible
ET jak2 to PV
