abdominal lymphedema from parasites? Please help

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abdominal lymphedema from parasites? Please help

Postby sebecbecky » Wed Nov 24, 2010 11:11 pm

I am fairly certain that I have abdominal lymphedema, but my doctor just dismisses the possibility. I have been in a living hell for 3 years, and don't even remember what it is like to feel "normal". I have seen many different specialists, had scores of blood tests, CT scans, MRIs, ERCPs, and even a spinal tap. It started 3 years ago when I was freezing cold all summer, very weak and tired, coughing, nauseous, constipated, and kept having intense upper abdominal pain to name a few things. Much to my horror, I discovered that I was severely infected with intestinal parasites. Since this is an area that most doctors in America do not have much experience, I was put on a general anti-parasitic drug without confirming the type of worm. I am very hygiene conscious, and don't know how I became infected. It could have been a stray cat that I was taking care of, but I was really careful around it and even wore vinyl gloves. It could have been trichinosis because I went to a pig roast, or it could have been from improperly washed garden vegetables. No idea.

As soon as the treatment started, I began to get even sicker to the point that I thought I had pneumonia. My temp went up to 103 degrees, I wheezed, coughed, itched, and developed petechiae all over my arms and legs. At the same time, I began to feel sensations like a vibrating or tingling in the area of my spleen (left side under lower ribcage.) Sometimes it was more like bubbly fluid. I was given several different types of parasitic medications.

Over the next three years the shape of my abdomen slowly began to change. It seemed uneven, distorted and swollen. Sometimes when I took a breath, it felt like water was moving around in my chest cavity (around my lungs, not in them). For the past year and a half, when I get out of bed my abdomen starts out semi-normal (except for where the skin has stretched from swelling so much.) But by evening, I can hardly bend forward or even sit at the computer because of the swelling. I feel so much pressure and fullness, like I'm 8 months pregnant. My stomach gets huge rolls like the Michelin tire logo, and I am a small person. (normal weight of 110, but now I weigh 125 and it feels like fluid). I have such horrible night sweats that the sheets are drenched. I feel sick to my stomach a lot, and don't have much appetite because there is no room to put food.

I think that my lymph system was overwhelmed and damaged with the dying parasites. My doctor hasn't helped me, the specialists haven't helped me, and I don't know what kind of doctor diagnoses or treats lymphedema. What is my next step? Wouldn't a CT scan or MRI have showed lymphedema? Is there any blood tests that confirm it? Any advice would be appreciated. I would include a photo of my abdomen, but I am new to the site and don't know if that is possible. Thank you for your help.
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Re: abdominal lymphedema from parasites? Please help

Postby sebecbecky » Sun Nov 28, 2010 3:43 pm

Since no one has responded to my post and request for help, I will be more specific with what I am looking for so hopefully someone can give me some answers.

1. I know that lymphedema can be triggered by an infection- is it possible that my lymph system became blocked while trying to process the toxins caused by dying parasites? (I assume they could have been in my lymph nodes too)

2. What kind of doctor should I look for to diagnose and/or treat lymphedema?
3. Would abdominal lymphedema show up on an x-ray, CT scan, blood tests or MRI?
4. Could anyone tell from a photo if the swelling I have could be from lymphedema? How can I post one?
5. Does lymphedema swelling start out least upon arising and get worse throughout the day?
6. Does lymphedema ever cause neurological symptoms such as a vibrating/buzzing sensation?
7. Is it possible to feel lymph fluid flowing inside your body? I feel liquid sensations a lot, but it's not coming from my stomach or intestines.

Thank you so much for anyone who can help.

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Re: abdominal lymphedema from parasites? Please help

Postby blubrdfrend » Mon Nov 29, 2010 8:03 pm

Welcome Sebecbecky, I am sorry that you have had no response. We are just ending the Thanksgiving holidays and many people are traveling. My experience with Lymphedema has been that it has gradually increased the size of my leg over the years. It usually starts small then spreads. I wish that your doctor was more interested in your condition. I don't think that the test you had would show lymphedema. I hope that you will be able to find another physician that will have more knowledge of your symptoms.
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Re: abdominal lymphedema from parasites? Please help

Postby patoco » Tue Nov 30, 2010 12:25 pm

HI Sebecbecky

Welcome to the family and I too apologize for not responding sooner. Please remember if that happens it doesn't mean we don't care. It may mean that something has come up that even prevents us from getting on line. That happened to me and the past several days have been a nightmare.

Hopefully I can answer some of your questions,


1. I know that lymphedema can be triggered by an infection- is it possible that my lymph system became blocked while trying to process the toxins caused by dying parasites? (I assume they could have been in my lymph nodes too)

ans

Actually is can be - even here in the US and/or the other industrialized nations. Generally the type of lmphedema caused by parasitic infections is called Lymphatic Filariasis

http://www.lymphedemapeople.com/wiki/do ... filariasis

But what is not well known is that there are parasites here too that can cause it. Number one is Toxoplasmosis. You get this from our sweet little kitties.

Here is a page on it and it's effect upon the lymphatics.

http://wwgoogle.comw.lymphedemapeople.c ... ?f=4&t=639

2. What kind of doctor should I look for to diagnose and/or treat lymphedema?

ans

There really is no specific doctor for lymphedema. Our doctors list runs the gamut of a half dozen specialties.

see this page too:

http://www.lymphedemapeople.com/wiki/do ... ld_i_go_to

3. Would abdominal lymphedema show up on an x-ray, CT scan, blood tests or MRI?

ans

You can detect lymphatic problems from MRI's but it is incredibly difficult and most doctors don't like using them because of that.

The very best test is called: lymphoscintigraphy

http://www.lymphedemapeople.com/wiki/do ... intigraphy

The above is our info page on it and will give you tons of info.

4. Could anyone tell from a photo if the swelling I have could be from lymphedema? How can I post one?

Unless the swelling is larger it can be difficult. Plus, one indicator is the size of the effect limb in relationship to the other limb. In other words, is it 10% - 20% etc larger.

5. Does lymphedema swelling start out least upon arising and get worse throughout the day?

ans

It will generally always be less in the mornings and then as we are up and about during the day, the swelling generally will get worse. This is one reason you need to wear compression garments and/or wraps.

6. Does lymphedema ever cause neurological symptoms such as a vibrating/buzzing sensation?

ans

It can cause unbelievably bad pain and also neuropathy. The nerves can be damanged from from the constant pressure and being compacted by the swelling.

7. Is it possible to feel lymph fluid flowing inside your body? I feel liquid sensations a lot, but it's not coming from my stomach or intestines.


I know that some people say they can felt lymph movement, but I honestly am skeptical on this. The lymph system is soooo tiny that I just don't see how it is possible.

I hope all this helps and again, super super welcome! :)

Pat
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Re: abdominal lymphedema from parasites? Please help

Postby sebecbecky » Tue Nov 30, 2010 10:31 pm

Thank you so much for your reply, Pat, and sorry to hear of the difficult situation you are in. I know people are busy, and I didn't mean to sound like I was complaining. Your answers are a big help, and I will check into those links. Lymphedema in a limb must be easier to diagnose because of being able to compare it to the other side. Unfortunately, my swelling is in the abdomen so I can only compare it to what it looks like without the swelling. I did have a toxoplasmosis antibody test which came back negative. I am seeing a new doctor on Thursday and hopefully she will be willing to check into this further. One other question: I read that psychiatrists often treat lymphedema - can you explain why that is? Does the medical community take lymphedema seriously or just think that people are imagining their illness?

thanks again :-)
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Re: abdominal lymphedema from parasites? Please help

Postby sebecbecky » Fri Dec 10, 2010 2:13 am

update: I saw a new doctor today and shared my thoughts on lymphedema possibly being the cause of the severe swelling in my abdomen. He said that because of the way the lymphatic system works, he doesn't think it would cause edema in my abdomen without also causing it in my feet and lower legs. Anyone agree or disagree?
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Re: abdominal lymphedema from parasites? Please help

Postby patoco » Fri Dec 10, 2010 11:36 am

Hey Sebecbecky

Actually, I would tend to generally agree with that. Say if a mosquito bit you in the arm, it would start there, The only way I could see it starting in the ab first is if you got the parasite through food and it found itself immediately in your digestive track.

Because of this, even though it might be extremely rare, I personally feel it is far better to make sure then have bad regrets later. I would still urge him to investigate.

It is also very very possible that something else happened with the abdominal lymphatics that has caused it. Go through your memory and try to remember anything at all that has happened recently. Make a list....also jot it down even if you consider it insignificant.

One thing that is for certain with lymphedema and that is that it is full of "surprises."

Let me know what happens I am quite concerned.

My Best to you!

Pat
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Re: abdominal lymphedema from parasites? Please help

Postby oceanbells » Mon Dec 27, 2010 1:36 am

I was researching something else and happened upon your thread and felt like I should join the site and provide comment. I actually have diagnosed blockage in my lymphatic system in the area around my cisterna chylli. It only took 5 years to get diagnosed though. I finally, after 2 years of me telling my doctors that I had blockage around my cisterna chylli (which is documented in writing), had a lymphoscintigraphy done at the end of October. Crazy thing is GI doctors caused the blockage.

I am 43, active duty military man, and have been struggling to diagnose my issues created by a "simple" medical procedure for acid reflux. It involved injecting a polymer at the opening of my stomach and we found out 3 years ago that it was inadvertently injected in my lymphatic system where the polymer settled in my liver, spleen, right lung, lymph nodes in center of my chest, and around my heart, and the outside of my intestines. Shortly after, doctors, again accidently pushed the polymer on my vagus nerve where I was in severe pain for 10 months before a surgeon at Johns Hopkins went in and removed the lymph nodes and polymer from the center of my chest, and in the process noticed that the right middle lobe of my lung was completely infiltrated and had to take that too. Talk about bad news after a surgery, but it could have been worse. I could move again, but things were still screwed up.

Your symptoms are exactly what I deal with except for a huge amount of pain in my abdomen believed to be caused by the polymer. The abdominal swelling and breathing issues were and still are a huge issue. Headaches as well when I had a lot of fluid on me. All progressingly getting worse. Two years ago, I took all my symptoms, a college level anatomy/physilogy text book, my years as a electronic tech troubleshooting, and now my engineering experience and went out to find out what I thought it might be. A week later, I took my spreadsheet and report to my doctor and told him that I believed that I had some blockage around my cisterna chylli or somewhere in my lymphatic system in my abdomen. The response, in a slight arrogant tone, "If you had blockage there then you would have edema in your extremeties." Sound familiar. I disagreed and explained to him through engineering how it would be possible. Bascially your arms and legs are mainly muscle and bone, the abdomen has the greatest area for fluid to accumulate. The lymphatic system also has valves to prevent it from going away from the abdomen and would only do that if my abdominal lymphatic issues weren't diagnosed then treated. He didn't seemed quite convinced, but wasn't sure how to test my system or who to refer me to prove me right or wrong. THE REAL ISSUE....THERE ARE NO SPECIALISTS. Even if your doctor wanted to prove you wrong, he has no reason to refer you an oncologist (who deals with the lymphatic system) or a surgeon (who deals with it as well). My docs had no idea what to do so they sent me back to a GI (the docs that caused my issues) who had no answers. I even went outside the military medical system and paid to see a GI to see if that helped. Nope. They all kept saying work out and lose weight and hopefully my pains would go away. I told them that working out caused more pain and swelling beginning about an hour after I worked out (which it would if I had blockage in my abdomen). Don't work out so hard was the response from four of them.

So I continued down this journey and what do you think started happening about a year ago. I started developing slight swelling in my hands and arms, along with some severe nerve pain. Last February I developed edema in my legs and feet after helping my wife shovel snow. I live in Northern Virginia and we had record snow falls and wasn't about to put that burden on my wife. Now who could have predicted the edema :D . I went to a civilian GI doc who was a friend to help me deal with the pain. I had just seen him a couple weeks earlier and I came in swelling everywhere from head to toe. He asked what in the world I was doing. When I told him, and then told him what I thought was going on, he got on the phone (with me right across his desk from him) and called radiology at a local hospital and asked a radiologist what if any test could be done to test the lymphatic system (don't you wish your doctor would do that). He was told and wrote an order for me to have a lymphoscintigraphy done of the upper and lower. I took that to the military docs who now had edema they were dealing with now so now they were convinced that I had pulmonary edema and needed diurectics and referred me to cardiology. I was given diuretics which helped for about a month and then I started putting fluid back on and increased to large doses of diuretics which caused potassium issues that I could not keep up with even by taking crazy amounts of potassium by mouth. I was sent to ER twice after blood draws because potassium was critically low. Between April and July I lost and gained over 300 lbs. Crazy. Cardiology ran tests and came back and said (for the second time...in 2006 the same tests were also ran) that nothing was wrong with my heart. My doc disagreed with them.

This is where a friend who knew someone pretty significant in DOD having to do with medical. They talked to that person, I got phone calls and told them what had happened, what was going on, what was recommended by the radiologists and in October it was done. I will never forget the moment. That day started with injections at my toes which hurt, and then the rest of the day was walking and lying down. After about two hours the doped agent made it to the lymph nodes in my groin (which is expected) and then pretty much stopped. They had me walking, eating, lying down trying to get it moving, and by the end of the day there was only a small stream going from my groin up my chest through my heart and over to my right lung (yep...that is the path of the polymer and yep I am fortunate to be alive). I started with one radiologist and the day ended with three because they were so amazed. It should have been basically in my lungs and liver. I even had to go back the next morning and it was still sitting in my groin. One of the radiologists said, "we are seeing what you have been telling us." One of the techs looked at me an said you that is bad, which I agreed. But with a tear on my cheek told her that it is also good. I have my dignity and respect back that was being robbed from me by doctors who did not want to listen to me. In the last two year period, I saw 13 different doctors and specialists who basically told me that I was fat, I needed to change my diet and work out. I eat 1200 cals a day and cannot workout...yet. Still optomistic. These weren't just military and I have heard the same stories.

I had challenges getting my lymphoscintigraphy scheduled because it is usually scheduled by surgeons who are just trying to diagnose the lymph nodes to test or remove connected with a tumor. My radiologists had done those numerous times, but he had never done my test before. My upper body (when they inject in my hands) went quick and was done in an hour meaning everything there worked well. My doc did have to call the radiologist and tell him what I needed to have done because they were looking for a surgeon to come down.

The pains in my hands and wrist were diagnosed as carpal tunnel and surgery was recommended. Funny how I could take diuretics and the pain would go away so I opted out of the surgery....thank god.

Right now, Johns Hopkins has my case and have been working on trying to figure out what if anything could be done surgically. Last email I saw they were talking to a surgeon in California. Any surgery would be extremely high risk because of the proximity of the abdominal aorta, inferior vena cava, and spine.

In the mean time, I started manual lymphatic massage treatment at a rehab place recommended by Hopkins. I have only gone a week and have lost 8 lbs. BTW...I eventually put on 70lbs and got to where I could not work. First time I lost weight without diuretics so I am hopeful. Don't decide to go out and get lymphatic massage. I tried 3 of them, 2 claiming to be certified, and they did it all wrong. Of course my therapists has never had anyone like me so focusing on the abdomen is not normal, but massaging the abdomen is part of her treatment. She has just amplified it a little.

I told you story to you know.....I UNDERSTAND YOUR PAIN.

During my research of the lymphatic system I can tell you that parasitic issues can cause lymphedema when they die, either on their own or during treatment. So many die and cause restriction/blockage and that is what caused the lymphedema. No reason why it couldn't happen in your abdomen which would result in the same issues you are experiencing. The lymphscintigraphy is pretty simple and only hurts during the injections which take only a minute.

I am getting my fat soluable vitamin levels(A, D, and E) checked next week to see if they are ok. Since I am pretty sure my body is having issues digesting fat, I want to see what my level are at to see if they are affected. I'll let you know, because that could be affecting our energy levels.

Kelly

Good luck, let me know if I can help.
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Re: abdominal lymphedema from parasites? Please help

Postby patoco » Tue Dec 28, 2010 3:07 pm

Wow...I so appreciate your post Kelly. Lymphedema never ceases to amaze me in how it presents and the areas it strikes.

Initially, I too though of any type of parasite as even in the US there are several parasites that can cause lymphedema. We traditionally think of the mosquito bites causing lymphatic filariasis in the tropical regions of the world, but that is only one of many. One we can get in the US can easily picked up from the family kitty (here kitty kitty - oops, I mean go away kitty kitty). I especially wondered about this too as we had this sorry a*# neighbor who had unspayed cats that bred worse then rabbitts and were constantly using my flower beds as latrines.

Parts of your post are soooooo familiar. When I went to the ER looking like one big water balloon, they too immdiateky thought of congestive heart failure and they put me through more tests then you can imagine. While I did cooperate, I made it very plain to them that it is from my hereditary lymphedema and the subsequent lymphoma.

A couple days after I was admitted, this group of very very solemn group of what nots came into my room to discuss my "end of life" wishes. I acted very puzzled especially since this is something no one has ever done before. They thought I was in complete denial and even asked if I was aware I had CHF.

This group actually did pay attention though and you can imagine the embarassment they had on their face when they had originally came in to let me know I was not going to live. LOL...OMG....I really did enjoy that one.

Anyway...I had an all over lymphoscintgraphy done, and it found I had almost no lymph movement through the thoracic duct (and) the right drainage system.

I was also thinking that the suspect that triggered my all over LE was actually the Rituxan treatment I had for my lymphoma. Because of the super low immune system, I never had the standard "chops" treatment for lymphoma and the rituxan was the only alternative. There was interestingly no record of it causing lymphatic failure and we were unable to find any stats on the number of hereditary LE patients that had taken it.

My oncologist though actually agreed with my initially assessment on the Rituxan and his comment was actually "it could well be the hereditary LE patients should never have Rituxan. Our suspicion was further verified when I ran into a woman at a LE conference who was (1) hereditary (2) had secondary lymphoma - same type too, (3) had rituxan (4) exploded into a water balloon.

It was unbelievable as I felt like she took an completely identical page from my own experience. Here were two hereditary LE'ers (both had the Milroy's LE Syndrome) that had exactly identical experiences with this "harmless" chemo drug.

As it stands now, I have gradually gotten worse since this all started 4 years ago and it doesn't look like we will ever find a solution or that this will reverse itself. When I started the pluerx system, I was getting about 1500 ml of fluid every three days from my lungs. We are now up to an average of 3,000 - 3,100 ml and I also now have three drainage tubes in me instead of the originally two.

Sorry, I feel like I have just rambled on here. Your post is great too because you have brought up points that I didn't - now that's teamwork and that is one of the great things about a forum. Working together and sharing insight is usually what helps others find the answers they need.

I hope so much that you can find relief without any surgery or intrusive procedure. Give your therapist a thumbs up for me in being willing to do abdominal MLD.Also, having your vitamin levels tested is important. I know of a number of LE'ers (one of my sisters included) that have problems with B vitamin absorption. She actually has to take daily shots for hers.

Your body may also be having trouble digesting and absorbing enough protein too as so much is lost in the excess fluid and possibly because of edema in the actual intestine. While I eat around twice what we need, my levels are super low and I am on some serious protein supplements.

All these threads just continue to tie together. I really hope we can keep in contact and look forward to hearing the results of the vitamin tests and any other procedure that has helped in your search.

Pat
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