LDN for ET/Jak2+ ??

[DH65]

Has anyone had experience or know if LDN might help lower platelets ?

As the Jak2 mutation is acquired not inherited I wonder if LDN could turn that gene off?

I am currently on Hydroxyurea only 500 mg 4x week. Would I need to go off of it?

I'll check with my doctors but I wondered if anyone had any thought on this. Thanks

[aredtigress Administrator]

That's a very good question, unfortunately one I do not have an answer for you. What is the condition named that you're taking Hydroxyurea for? That might help me in researching the Trust's files.

[DH65 in reply to aredtigress]

ET essential thrombocythemia because of JAK2 V617F is named for a mutation at a specific location in the JAK2 gene and is the primary genetic test for JAK2 mutations that lead to MPNs. JAK2 mutations are acquired as opposed to inherited and result in the change of a single DNA nucleotide base pair, called a point mutation. This change results in a JAK2 protein that is constantly "on," leading to uncontrolled blood cell growth.

[aredtigress Administrator in reply to DH65]

Thanks, that helps. While I can't find anything in the research that refers to JAK2 proteins in particular, there is reference to cell growth. Here are some quotes with files referenced:

From Dr. Datta's paper on pain management: "is postulated that when the drug decouples from receptors there is a rebound increase release of met 5-enkephalin (opioid growth factor, OGF) that is metabolized to endorphins and encephalin, our endogenous pain killers. These compounds then produce pain relief similar to opiates. The body responds to these compounds by inhibition of cell growth, promoting healing, and reducing inflammation, all in an effort to restore homeostasis. LDN also causes increase in OGF receptor density."

From LDN & Cancer Trial & Study Data (I choose this one as cancer is "uncontrolled cell growth": "Through the work of Bihari and Zagon, it has been determined that the level of the endogenous opiate methionine-enkephalin is increased by LDN. Met-enkephalin is involved in regulating cell proliferation and can inhibit cancer cell growth in multiple cell lines."

Being a generic, compounded drug, there are limited trials and studies. The Trust's website brings together both the medical industries research and empirical studies. There are some great files there.

Personally, It's my opinion that trying LDN is always better than the pharmaceutical drug "merry go round". It won't hurt, and it might help you as it has others with challenging issues. Worth a try.

Michelle

[DH65 in reply to aredtigress]

I agree I wonder if I need to be off any medications?

The Hydroxyurea and I take Lorazipam 0.25 a very small dose to help sleep

[aredtigress Administrator in reply to DH65]

The Lorazipam is definitely okay to take - I do A quick research on Hydroxyurea looks okay as well. Opiates can not be used with LDN, some doctors don't like to combine anti-rejection meds and some doctors closely monitor steroids.

I always suggest talking with your pharmacist and/or doctor before adding a new medication.

[DH65 in reply to aredtigress]

Thank you, this is so helpful. I do have 1 or 2 doctors in mind as I know I need a rx and would prefer someone to monitor me. Good to know about Lorazipam as I don't want to deal with coming off that right now. I am not on any Opiates, anti-rejection meds or steroids.

The one thing that worries me a little is the possibility of not being able to sleep at night. I tend to be dead tired in the morning and tired but wired at night.

[aredtigress Administrator in reply to DH65]

On the other forum I admin, many people have sleep issues the first couple of weeks, that usually goes away. Melatonin and other sleep aids are okay to take. Those few who still have issues end up taking LDN in the morning rather than night.

"Sleep disturbances" really means vivid dreams for most folks. I had dealt with insomnia for 10 years, and was delighted to actually have dreams. I went from 90 minutes sleep at a time to 3-4 hours at a time. The next best part was being able to roll over and go right back to sleep.

Are your doctors apt to research a med that is new to them? Is it better if you bring in printed material? If it is, let me know and I can attach "Doctor Info" files (I think, I'm new to HealthUnlocked and haven't tried to do that yet)

All of us are different, especially with LDN. Hundreds of thousands of people take it successfully, with few issues. It has the least amount of side effects of any med I've taken and lots of benefits beyond the my Fibro issues.

[DH65 in reply to aredtigress]

Doc files would be helpful especially for hematologist

[aredtigress Administrator in reply to DH65]

These files are for all doctors: Doctor Information Packets

US - ldnresearchtrust.org/sites/...

UK - facebook.com/notes/ldn-rese...

Here's a list of studies and trials, you might want to look them over and see if any are similar to your condition to bring to your doctor as well. ldnresearchtrust.org/Clinic...