Hello Tom, (not sure where to post this so I posted as a new topic, as well)
Thank you (and Pat) for making yourself available like this. Hmm... actually I have several questions.
I have been doing a lot of research and I am really frustrated because it is not obvious what the cause of my edema is. I have had skin parasites, that are thought to also be systemic, for about eight years and after their onset is when the whole body edema began. The skin infection first presented as a classic Cutaneous Larva Migrans with the typical red, itchy, serpigenous (squiggly, snake-like), very fast tracking. But, unfortunately for me, it was not just one track with one larva, but hundreds that all traversed the skin on my torso at once. That began after one year of very intense skin symptoms without much visual display. Since all of that began, I have been extremely prone to all sorts of other skin pathogens/infections. My liver was damaged years ago by Tylenol and I cannot take antiparasite drugs. They often do not work anyway.
I believe that, contrary to the usual theory, you can get a clogged lymphatic system from chronic skin parasitic infection due to ANY parasite - NOT just the two or three that are commonly mentioned in the literature. AND, you certainly do not have to leave the country (US) in order to be exposed to parasites !
So it is truly impossible to know how much of this edema is due to parasites clogging the lymphatics, how much is perhaps due to bad heart valves, how much is due to my damaged liver. I cannot have any type of anaesthesia because of my liver problems so heart surgery is out of the question. I cannot even have MLD because I have Lyme infection on my legs. I cannot slide a compression stocking up over the infection on the lower part of my leg because it will bring the spirochetes up to better skin.
I am getting bigger and bigger so fast that I now have the added horror of getting varicose and spider veins from the pressure of the water pooling. I will see an area of my body balloon out and that is immediately followed by new varicose veins. This is horrific because bad veins are going to make all of this even worse. I tried to do some compression bandage wrapping and the veins on the top of my feet are so sensitive (or the associated nerves ?) that even very light wrapping hurts them more than being unwrapped - but I need to do something to keep from getting even bigger.
I will state my questions here separately so that it is easier to address all that I have stated above.
1) I have heard that in order to help out venous problems, that compression can help - but
a) how can you put compression on something that is being blown out from pressure to begin with ?
b) is this pain around the bad veins from pressue from them on nearby nerves and / or pressure from the swelling from the edema from the original lymphedema ? Before the veins got bad, even when the foot was very swollen, I did not get that degree of pain.
c) I am currently taking diosmin(450 mgs) and hesperidin (50 mgs) - 3 times a day and am going to order the micronized version (supposedly more bioavailable) of it called Daflon 500. It is for chronic venous insufficiency and lymphedema due to CVI . Have you had any clients who have used it for CVI and/or LE ? Results ?
d) Have you come across anybody whose LE was increasing so fast that it damaged their veins ? I will restate here that the vein problems came ONLY after each area was "edematized ".
2) If the edema is partly due to heart valve problems - can high level, chronic edema cause damage to the lymphatics ? I think so because of all the skin infections, along with typical cellulitis.
3) Venous insufficiency IS a type of high-protein edema. So even if part of the edema originated from heart failure, I now have a high-protein LE from the vein problem. Any comments on this, please ?
4) From what I understand, if you have decreased levels of protein in the blood (my albumin and total protein were normal on a recent blood test), that that could cause LE by the following mechanism. Proteins hold onto water and if the protein within the blood vessel is LOW compared to the protein level in the surrounding tissue, the water would seek out the protein in the tissue and therefore, cause edema in the tissue. But then I heard something that Casely-Smith said about if protein is low in the interstitium (I think this means the tissue) that that can cause edema. This really confuses me because I have generally gotten the idea that Casley-Smith had thought the former.
a) This seems contradictory to the first bit. Please, comment.
b) I have always associated low blood protein with liver or kidney disease. Does the fact that my blood levels of ablumin and total protein are ok mean that the edema is NOT due to kidney or liver problems ? (Doctors do NOT know about this elementary stuff and do NOT want to know.)
5) Casley-Smith refers to testing the amount of protein in the tissue in terms of pressure (I think) when referring to determining if there is a high protein ( in tissue).
a) How is this tested for? By whom?
6) Do you have any ideas of what I could do ?
7) Do you think that even though my veins are becoming varicosed that I still have a chance to recover so that I can be on my feet for more than an hour before they become very painful ? The impression I have form eveything I have read, is that once you have varicose veins, they never get better and they just ahve to be destroyed. But I have so many that if I had them all destroyed, there would be none left. I cannot have local anaesthesia for that anyway. I am hoping that the Daflon (and pycnogenol) will help the veins enough so that I can start compression bandaging without causing my feet even more trauma from the bandages. Your comment, please.
Thank you so much for listening to all of this. I am suffering so much and not getting any help from doctors. Even doctors who are supposed to know about this stuff are really un knowledgeable. I understand that you may not have all the answers but I appreciate whatever you can tell me.
Liatris