Hi, Just wondered if folks here have had DVT's. My husband 9 years dx with PD..hes really active and eats great, but does fly often has developed a DVT in his right leg.
Is there any connection to higher risk of blood clots with Parkinsons ? Or could that be a side effect of C/L ?
Any helpful info if you had one...what was your treatment and how long did it take to clear? The pain is so bad he cant stand long
Thanks
Deep vein thrombosis and its risk factors in neurodegenerative diseases: A markedly higher incidence in Parkinson's disease
sciencedirect.com/science/a...
Thanks
Postural Abnormality as a Risk Marker for Leg Deep Venous Thrombosis in Parkinson’s Disease
Years before the PD Dx, I developed a DVT in my arm. Generally people with DVT have it in a leg. Then later I developed 100% obstruction of the DAV; Descending Anterior coronary vessel also known as the "Widowmaker". I had endoscopic surgery to remove the clot followed by a stent. The stent ensured the vessel will stay open.
The earlier thrombosis responded partially to medication. The pain not so much. I found an old treatment for clots. Blood is taken from a vein then immediately injected into a muscle. The body responds by mobilizing macrophages out of the bone marrow.
The theory is that the body treats the clot as a foreign invader and mobilizes healing cells to attack and destroy. This is AHT; auto hemo therapy. It was common before the development of Penicillin. Once penicillin became available there was no longer a need for AHT.
I like this idea. Would it work if there a bone marrow disorder like cancer?
SE
In theory it could. Any abnormal cell will be attacked by macrophages. Cancer is definitely an abnormal cell.
My husband had a DVT 4 months ago, scary as hell. He took Eliquis for 3 months. We added Neprinol AFD and daily baby aspirin adjunctively which he continues to take.
We borrowed from the FLCCC protocol and what they were using to treat blood clots for long covid victims. We are unvaccinated and can rule out this particular poison as a cause for his blood disorder.
We also pressed for a hematology consult and will be going back for bone marrow biopsy because of his abnormal blood tests.
He had a repeat US on his legs after 3 months, it showed that the clot was a long-standing condition. He had been having swelling in his ankles for a couple years. Our road trip finally pushed it into a blockage.
I don't know if any of this resonates with you but this is the way we're approaching his blood disorder.
SE
Thanks so much. Very helpful.. so now that its. along standing condition will your husband have to stay on blood thinners? we wondered if my husband has actually had it for quite some time and it got exacerbated by some longer plane rides and stress. We have requested a consult with a hematologist. Hes on Xarelto but its sooooo expensive! Hes still in pain when up on his leg and hes been on the meds for 7 days. I will look at the FLCCC-
No prescription blood thinners right now. Using Neprinol and baby aspirin for prevention and maintenance with compression socks. Doing good so far.
Pursuing blood work up and bone marrow biopsy to find out why this happened and to treat underlying health conditions.
Medical consensus was that the car ride caused the DVT, the repeat US proved it wasn't a new onset blood clot.
You really have to advocate for yourself and loved ones.
SE
High blood sugar makes blood platelets sticky and more likely to clump together and form blood clots. A low carb diet will help to keep blood sugar down and help with the PD.
DVT can be caused by not moving, such as when you're on a long flight. You sit and you dont walk. The stagnant venous blood in the leg then clots (thrombosis). To get the blood to not stagnate requires the calf muscles to contract and essentially "juice" the veins. Remember, veins are not under direct pressure from the pump of the heart, except the Pulmonary Veins. I hypothesize that People With Parkinsons are more susceptible to this because they are inclined to move around very little. When you have Parkinsons, its hard to move. It requires some effort because dopamine, which PWP lack, is required to initiate movement. The most dangerous thing about DVT is that the clot (thrombus) could break loose and get lodged in the lungs. This is called a Pulmonary Embolism. Depending on the severity, this could be fatal.
Often times, doctors implant a filter in the Inferior Vena Cava, the main vein, to trap clots that get loose before they reach the lungs or heart. Its a very simple procedure and can usually be done in about 10 minutes in the Interventional Radiology Lab. I assisted on thousands of these procedures myself. Thats how I know so much about it! I dont think Eloquis and drugs like that actually break up the existing clots. I think they just prevent it from getting worse. Eloquis and those sorts of things have unpleasant side effects, like bleeding and bruising. The body can eventually absorb it in some cases. In severe cases, they blast the clot with TPA or Urokinase (which I dont think they make anymore) via a catheter. This requires hospitalization and constant monitoring in the ICU.
Another thing that is common on long flights is Kidney Stones. Im not sure exactly why, but I observed this throughout my career as well. Possibly due to dehydration.
If your husband takes any flights in the future, I would advise him to drink a lot of water. That way, he'll get up and walk to go to the bathroom a lot, and also prevent kidney stones! A WIN-WIN!!
Good luck!
Not just PD - all NDDs affect mobility. PE is definitely a concern with clotting disorders, a filter wasn't discussed with us. We were told that if another DVT forms it's blood thinners for life. Eliquis definitely has side effects and does not dissolve blood clots. That's where Neprinol (nattokinase, serrapeptidase and lipase) comes into play to help the body break up the DVT, which isn't happening because abnormal blood morphology caused the DVT to begin with. Agreed that hydration is very important, also quality compression socks help a lot.
SE
Yes to compression socks!
Thanks so helpful...Where and what brand do you recommend getting of Neprinol? and did the Dr. mention any contraindications of taking Neprinol.
This is what we use: Arthur Andrew Neprinol AMD, it's on Amazon. Dr. didn't say it was contraindicated. a.co/d/2AUbCi0
Can you recommend good compression socks
My husband likes the ones infused with copper. Costco doesn't sell them anymore, a web search has a lot of options.
Blood Pressure 
Naturally raising blood pressure in Parkinson’s 
Thiamine shots in UK?
Any experience with Thiamine [B1] holiday?
Rytary coverage by Insurance
