Questions for Tom, the therapist

[Liatris]

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

[katytambou]

Hi Tom, I have lymphedema in both of my legs from top to bottom, my right leg being alot worse on the top, but my left top leg not that bad. My husband wraps them every nite and usally only to the knees. The left leg does not need to be wrapped all the way up but the right should. The right leg has a inner bulg and a bulg below the knee by the side of the shin bone. We don't always wrap the right leg all the way up because I get a rug burn, plus the top of my leg gets sore and last a couple of days. It's very hard for me to watch him bandage my legs every nite, and most of the time he wraps them early evening so he can go to bed and get up at 5 A.M. So I'm interested in night time gear so I can put them on. Is there any brands you can recommend to me. I heard the best are the adjustable ones because they meet the change in leg size. Can you please help? Also if I put, if I put extra foam where the bulgs are, will that help bring them down?

Thanks,
Kathy

[tkincheloe]

Hi Kathy,

While at the National Lymphedema Network (NLN) Conference in San Diego, I had the opportunity to talk to many vendors about their products. Two of the products that I have recommended to my own patients who, for whatever reason, were not able to apply conventiona compression wraps were Circaid Products and Farrow Wraps. Both companies offer low-cost alternatives to self-wrapping.

You can contact Circaid products directly by going to: www.circaid.com

You can access prices on Farrow Wraps by going to Bandages Plus, an authorized distributor of Farrow Medical. This web address will take you right to the pricing page, with photos and even a video showing the Farrow Wraps and how they work:
www.bandagesplus.com/catgrp.php?xGrp=38

Both types are easier to apply compared to conventional compression bandages. But keep in mind that no device out there completely replaces properly applied compression bandages because of the need to maintain appropriate graded pressure.

I've heard mixed reviews about both types of alternative wraps. What works for one person may not necessarily work for another, even with the same or similar problem. So you and your therapist will have to determine what might work to your best advantage. Be sure to discuss your needs with the sales representative to make sure you are getting the right product. Also be sure to discuss return policies so that if it doesn't work, will the company work with you for another resolution?

If your therapist is not a DME (Durable Medical Supplier) you will need to contact someone locally who is and have them measure you for the device you choose and order it for you. You may be able to order them directly by having your therapist do the measurements on one of their forms, which can be ordered from the companies. I use a DME supplier who also takes care of ordering other compression devices and garments for my patients so it is not an issue for me to get what I need for my patients.

There are many other devices on the market to make night wrapping easier but some of them can run well into the thousands of dollars. I chose Circaid and Farrow sspecifically because most of my patients don't have the out-of-pocket money nor the insurance coverage for the more expensive devices. Both Circaid and Farrow offer low cost off-the-shelf models for under $100 per limb (a bit more for custom or full leg lenth).

As for the "bumps" on your leg, what does your therapist, if you have one, say about it? It is difficult to recommend a solution without seeing the problem first-hand and in person. Is there sharp pain, redness, or additional swelling associated with these bumps? If so, I would strongly recommend you see your doctor as soon as possible and consider having an ultra sound done to rule out possible DVTs (deep venous thrombosis, or "clots"). If DVTs are not an issue then I would definately consider adding a thicker layer of cotton wrap or pieces of foam over the bumps to help reduce them.

I wish you luck, and if we can be of further help, please stop by again.

Tom

[pauljay]

Hi All

Well I am only new here and just reading posts, as I have a friend with mild lymphedema, but after reading these posts I am quite amazing at some of the cases and things people are going through

I hope things work out for you all

Kind regards

[patoco]

Thanks PaulJay and welcome to our family here. If we can be of help, just let us know.

Kind regards,

Pat

[katytambou]

Hi,
My nane is Kathy, and 3 years ago I had cancer and had a operation. Some Lymph Nodes were taken out and 4 months later got Lymphedema in both legs.
Well I just wounder if you heard about Doctors are not going to take out Lymph Nodes any more. My husband said in he heard it on the news in Illinois on channel 9 and some other channel. They also said it really does not help with takeing out some Lymph Nodes. For some reason it made me cry but what done is done. Can you tell me if there is any truth to what was said.

Thank You,
Kathy

[erivertown]

Hi Kathy,

Your husband is probably referring to the recent announcement to the media about a study that states that patients with early diagnsosis of breast cancer may opt out of having lymph nodes removed from the armpit even if some of the nodes are positive for cancer. This was a limited study of 900 women with a certain type of cancer known as T1 and T2. The study suggests that removing lymph nodes that are positive for cancer is not necessary because the treatment used on this type of cancer is sufficient for destroying the cancer cells in the lymph nodes as well as the breast. In other words, since treatments have improved, there may be no need to put people through unecessary surgery, which as you know, can result in lymphedema as well as pain and other complications caused by surgical removal of the nodes. If indeed true, this is a POSITIVE milestone in cancer treatment that could help reduce the risk of lymphedma from surgical lymph node removal.

The information that I have is from media sources; I have not actually seen the study or the research abstract, which I hope to do soon. If it is different than what the media is saying, I will post it here.

Keep in mind this is just one study on one type of cancer. There are many types of cancer cells and surgical lymph node removal may remain the norm for other types for many years to come. Treatment for various cancers is continuing to improve and we can only hope that someday it won't be necessary to perform any type of cancer related surgery, let alone the need to remove lymph nodes.

Tom