Q: I have a friend who has asked me to write to you about his 14-year-old grandson who has the rare disease lymphangiomatosis. We have been told that this is not a cancer bur a developmental problem with the lymphatic system. The MRI and X-rays revealed a concentration of spots in the spleen. These pictures were taken about a year ago.
Have you heard of any studies involving this disease and treatment with transfer factor, and what if any side effects are there in using transfer factor? Are there any clinical trials his grandson could participate in regardless of the types of treatment? Thank you.
A: Lymph is a fluid comprised of white blood cells and chyle, fluid from the intestines that contains fats and proteins, both of which attack bacteria in our blood. Lymph nodes are soft, bean-shaped structures that commonly cannot be seen or palpated easily; There are between 600 and 700 lymph nodes in the human body located in the armpits, groin, neck, and inside the center of the chest and abdomen. Nodes produce immune cells that help the human body fight infection. Further, they filter lymph fluid. There are a number of conditions that involve the lymphatic system. These conditions are treated by immunologists, oncologists, vascular surgeons, physiatrists, and dermatologists. Beyond that, some therapists are specifically trained in the manual drainage of the lymphatic system.
Lymph leaves tissue and enters the lymphatic system through lymphatic capillaries. Almost 75% of these capillaries are superficial and located near the surface of the skin. The balance are deep lymphatic capillaries that surround most of the body’s organs. Right and left drainage areas make up the lymphatic system. The right area handles the right arm and chest, while the left clears the balance of the body. In summary, the lymphatic system is actually a network of lymph nodes, vessels and ducts that produce and move lymph from tissues to the bloodstream.
Lymphangiomatosis is a congenital disorder of the lymphatic system that can affect any system within the body with the exception of the brain and the central nervous system. The parts of the body that can be affected are the heart, lungs, kidneys, liver, spleen, abdomen, skin, skeleton and the pericardium. More than one area of the body can be affected, causing tumors to grow in those areas. The tumors are benign; however they can interfere with the body’s normal functioning. While rare, lymphangiomatosis can affect anyone at any age, however it is most frequently diagnosed in individuals younger than 20 years of age.
As can be expected, symptoms will vary depending on which part of the body is affected. The individual may experience wheezing, shortness of breath, a dry cough, chest pain and hemoptysis (the coughing of blood). Diagnostic testing may include X-rays, a CT, MRI and tissue biopsy. Treatment will be coordinated based on the part or parts of the body affected. It may include antibiotics, anti-inflammatory or anti-viral drugs, draining fluid from the lungs, radiation, initiating a low fat/high protein diet, surgically tying off the primary lymphatic duct in the chest cavity, and more.
A transfer factor, given by injection or taken orally, is a chemical taken from a human or animal that has already developed immunity against a specific disease. It is used on individuals with a weakened immune system, as well as for other medical disorders. Thus far, transfer factors have only been used in labs for experimental use (which may be just what you are looking for), but I cannot state whether this treatment is appropriate. This is a question that may be presented to the attending physician.
Additional information may be obtained by logging on to the wee.lymphangiomatosis.org or www.lqdalliance.org sites. With regard to current test groups or studies being performed at this stage, I recommend you contact hospitals such as the Cleveland Clinic, John’s Hopkins, Brigham & Children’s, Mayo Clinic, or other large facility near your friend or log on to clinicaltrials.gov. Good luck.
