I didn’t get diagnosed with JAK2 and PV (2022)until a year after a hysterectomy (2021). (They think the heavy periods were masking.) Periods may be a blessing in disguise right now for you. (Lol. I am still low on iron too, even after several courses of infusions. (2020)
I was actually going to have a partial hysterectomy do to endometriosis. Can be so painful and heavy. Thank you for sharing with me. I would like to stay without symptoms well fatigue. I’m 46
I am glad I did the hysterectomy. I don’t regret having it done. I understand wanting to get rid of that pain you have all the time. I have phlebotomy every other week for treatment. Fatigue, headaches and dizziness are my main symptoms. It causes me to get depressed. I am 49. Hysterectomy I was 48.
Good morning! Having never heard of Ozone Therapy and having PV/JAK2 and taking 1000 mg of HU for @5 years and undergoing phlebotomies several times a year, I thought I’d read that Cleveland Clinic article you attached.
At the risk of “injecting” (pun intended) some humor into a very serious discussion. I’ll stick with a phlebotomy any day!
Good morning! Having never heard of Ozone Therapy and having PV/JAK2 and taking 1000 mg of HU for @5 years and undergoing phlebotomies several times a year, I thought I’d read that Cleveland Clinic article you attached.
At the risk of “injecting” (pun intended) some humor into a very serious discussion. I’ll stick with a phlebotomy any day!
Hi Christina! LOL. Loved the pun! I’m in full agreement with you, I’d take a phlebotomy any day over some of the ‘entry’ points and risks with the ozone therapy. 😂
I had heard of Ozone therapy before, but not associated with any blood cancer treatments. An acquaintance had tried OT for Lyme disease through a functional therapy practitioner. Didn’t seem successful but what ultimately helped was the hyperbaric chamber sessions.
When there’s an underlying mutation involved in our blood conditions, unless that could be reversed I don’t see how ozone therapy would cure the condition.
Thanks for injecting the humor!! 😁
PV diagnosed 4 years ago I am on 1000mg Hydrox keeps the Hematocrit , Hemoglobin and platelets in check no problems with side effects until about a year ago . I walk about 2000 kms a year gets my thick blood moving and I just feel a whole lot better basically . Any way I developed a sore on my heel 10 months now and it just won't heal. My Hematologist took me off the Hydrox 3:weeks ago and booked me in for 6 phlebs had three. Well this wound is still not good, at my wits end. Anybody shed some light. It's about 3 cm by 3 cm. Tom
PV diagnosed 4 years ago I am on 1000mg Hydrox keeps the Hematocrit , Hemoglobin and platelets in check no problems with side effects until about a year ago . I walk about 2000 kms a year gets my thick blood moving and I just feel a whole lot better basically . Any way I developed a sore on my heel 10 months now and it just won't heal. My Hematologist took me off the Hydrox 3:weeks ago and booked me in for 6 phlebs had three. Well this wound is still not good, at my wits end. Anybody shed some light. It's about 3 cm by 3 cm. Tom
@pelicanpoint Hi Tom, with as much walking as you do, having a sore on your heel for 10 months is pretty concerning on multiple levels. From a little research this morning, there have been some rare, documented cases of ulcers in lower legs and feet associated with longterm, higher dosages of HU. Again, rare. Apparently there can be changes in the cellular structure for normal cell repair which may interfere with usual wound care treatment.
Your doctor took you off the hydroxy for now but it’s important to have the wound tended by a professional. Make sure they’re aware of the Hydroxyurea involvement. Have you consulted with a podiatrist or dermatologist?
Connect
Connect
Like
Helpful
Hug
I was actually going to have a partial hysterectomy do to endometriosis. Can be so painful and heavy. Thank you for sharing with me. I would like to stay without symptoms well fatigue. I’m 46
I am glad I did the hysterectomy. I don’t regret having it done. I understand wanting to get rid of that pain you have all the time. I have phlebotomy every other week for treatment. Fatigue, headaches and dizziness are my main symptoms. It causes me to get depressed. I am 49. Hysterectomy I was 48.
-
Like -
Helpful -
Hug
1 ReactionI just started low dose of Hydrea because of high hematocrit.
Did your wife not receive any treatment for her PV at all?
Has anyone heard of using ozone to treat PV?
Welcome to Connect, @nobody1 Interesting concept, using ozone treatments to treat blood disorders. But to date, ozone therapy hasn’t been tested in large-scale clinical trials conducted on humans, so there is limited information regarding treating blood conditions such as Polycythemia Vera.
Posting a couple of articles below with information about ozone therapy that you might be interested in reading.
From Cleveland Clinic:
https://health.clevelandclinic.org/ozone-therapy
Medskill.com: https://www.mediskill.com/ozone-therapy/comparing-iv-ozone-therapy#toc-what-is-iv-ozone-therapy-used-for-
Were you recently diagnosed with PV? Does your hematologist currently have you on any treatments?
Good morning! Having never heard of Ozone Therapy and having PV/JAK2 and taking 1000 mg of HU for @5 years and undergoing phlebotomies several times a year, I thought I’d read that Cleveland Clinic article you attached.
At the risk of “injecting” (pun intended) some humor into a very serious discussion. I’ll stick with a phlebotomy any day!
Hi Christina! LOL. Loved the pun! I’m in full agreement with you, I’d take a phlebotomy any day over some of the ‘entry’ points and risks with the ozone therapy. 😂
I had heard of Ozone therapy before, but not associated with any blood cancer treatments. An acquaintance had tried OT for Lyme disease through a functional therapy practitioner. Didn’t seem successful but what ultimately helped was the hyperbaric chamber sessions.
When there’s an underlying mutation involved in our blood conditions, unless that could be reversed I don’t see how ozone therapy would cure the condition.
Thanks for injecting the humor!! 😁
-
Like -
Helpful -
Hug
1 ReactionPV diagnosed 4 years ago I am on 1000mg Hydrox keeps the Hematocrit , Hemoglobin and platelets in check no problems with side effects until about a year ago . I walk about 2000 kms a year gets my thick blood moving and I just feel a whole lot better basically . Any way I developed a sore on my heel 10 months now and it just won't heal. My Hematologist took me off the Hydrox 3:weeks ago and booked me in for 6 phlebs had three. Well this wound is still not good, at my wits end. Anybody shed some light. It's about 3 cm by 3 cm. Tom
-
Like -
Helpful -
Hug
1 Reaction@pelicanpoint Hi Tom, with as much walking as you do, having a sore on your heel for 10 months is pretty concerning on multiple levels. From a little research this morning, there have been some rare, documented cases of ulcers in lower legs and feet associated with longterm, higher dosages of HU. Again, rare. Apparently there can be changes in the cellular structure for normal cell repair which may interfere with usual wound care treatment.
Your doctor took you off the hydroxy for now but it’s important to have the wound tended by a professional. Make sure they’re aware of the Hydroxyurea involvement. Have you consulted with a podiatrist or dermatologist?