Question about testing for filariasis

[xshlynne]

Not much in this section, but I thought I'd post my experience and ask if anyone has any answers. My lymphedema manifested at age 13-14 and was preceeded by lymphangiomas at age 11-12. I was always told "well you must have just been born with it." But, no doctor ever did any testing. Last fall, I was at a lymphedema clinic for therapy and I mentioned to the therapist that I had lived on Guam for two years and that while I was there the lymphangiomas appeared and within a year after leaving, the swelling in my right hand and leg appeared. She asked if I'd ever been tested for filariasis. When I described the swelling in my leg and hand and how it came and went from age 14 until about age 32 when it became constant, she said that doesn't sound like primary lymphedema (the coming and going of the swelling). I was referred to an infectious disease specialist and tested for filariasis and it came back negative. My question was whether after 23 years, would a test even come back positive for filariasis. At this point, I'm just trying to find answers. No one in my family has lymphedema or lymphangiomas and I'm just trying to figure all this out.

[patoco]

Hey Ashlynne

If the tests came back negative, it is pretty much 100% positive that you don't have lymphatic filariasis - but it was a good decision to be testes since you spent time in Guam.

If you had contracted it earlier, by now there would be other symptoms, signs and many more complications.

Sometimes primary lymphedema can show itself even if no one else in the family has a history of it.

For example, in our Children with Lymphedema group, we actually have one ltitle boy who is the very first person in his family to show the genetic mutation taht causes one of the primary lymphedemas. In technical terms, since he is the first to have the mutation, it is referred to as the "proband."

There also could simply have been a developmental problem with your lymphatics that triggered the lymphangiomas and lymphedema. Without specific gene testing, it would be hard if not impossible to say.

But, I am also surprised that a lymphedema therapist would tell you that with primary LE, the swelling doesn't come and go. Because it does.

My left leg was always swollen, but the right was an off and on thing until I was an adult.

That is more common then you might think with early stage lymphedema.

I hope this all helps. I can imagine how frustrating this whole thing is, jsut remember, I amd the others are always here if you need us.

Pat

[xshlynne]

Thanks. I'm really just searching for answers right now. The infectious disease doc recomended that I go to Mayo Clinic to have the lymphcentigraphy testing and also be evaluated there. Apparently Mayo is doing alot of research on lymphedema. I have good insurance and a flex plan so it wouldn't be a hardship and I just need to feel like I need to have some answers if there are any out there. I just with doctors had told me what this all meant when it first manifested. Now at 37, my leg is pretty swollen. Not as bad as it could be based on pictures I've seen, but its bad. I wish I'd someone tell me this was a possibility. I feel this need to make sure others understand early on the potential repercussions if they don't take care of it from the start with MLD and compression garmets. I didn't know any of that.

[mammanetty]

All the research I have done on filariasis states that United states has not had any domestic cases meaning it happened here. I have seen a lot of pictures of this disease and my legs look just like it. Also I am concerned because all of my lymph edema started after I had received several severe mosquito bites 2 summers ago which I itched and they got infected and cellulitis set in. Would it not just be better to run this test and rule it out or am I having false hope?