lymphangiectasia

[ru37]

It has been an extremely long miserable journey, that I dont think will ever end. I have been sick now for about 10 months. Symptom's 1st started with pitting-adema...The Dr. ran blood-work, found out that I am losing my protein in my urine. I have had every cardio. test known to man...negative (which is wonderful). I have even gone to nuclear-medicine and have had shots of dye in between my toes! (the dye runs thru your lymph system, finding any obstructions, etc. I have had every gastro test available, finding small things here and there, but nothing that would be an explanation for the horriable adema! They finally diagnosed me with Lymphadema and this Lymphangiectasia...now my thyroid is out of range, supposed to be between 1-2, and is a 9! I have not had a period in almost 11 months. I am SUPER stoked that I dont have Celiac, Lymphoma, or etc....My Dr.'s have no idea what to do now except for putting me on a low-fat high-protein diet and hope for the best. My small intestines have lesions everywhere, and there is ALOT of inflamation! (I have been drinking alot of Aloe-vera WORKS GREATLY! ..........Anybody have advice on what my next step should be? Anybody going thru this too? Help!


This discussion is related to intestinal lymphangiectasia.

[ru37]

You mentioned that there are other approaches that go beyond the scope of GI??? Please message me. I would like to know....Thank you

[ru37]

Thank you for all this information! I wish my printer worked so that I could copy it! I'll try writing it all down...My family Dr. wants to send me to a specialist in Denver at the University. (I live in Boulder). I feal so sad because my Dr. is scrambling for answers and tests and information...and I fear that while I'm waiting, my body is just getting closer and closer to the point of no return. The only thing that I am doing to treat this is: a low fat, high protein diet, drinking lots of aloe and coconut kefer (I found alot of great info. in a book called "The body ecology diet") the kefer is to start the healing process of my small intestines....and that is it! So basically, I'm not doing anything to help myself! My Dr. has NO IDEA what I should do! This is sooo depressing! But thank you so very much for what you have told me, you are very kind.
Have a good night.
Ruhamah Love Andrews.

[TheLightSeeker]

Hey ru37 .
  I'm away from my desk (and away from home), for a 2 week intensive training  course.
Nevertheless, I'll attempt to offer you a few suggestions that may help - aside from
the deeper alternative approaches that I have in mind.
1. It is almost certain that your  lymphangiectasia.is caused by inflammation.
To effectively deal with  this condition you need to:
a. Re-balance and strengthen your immune system. You may need to see a Naturopathic Doctor for this, as you may need I.V. supplementation
b. Find the root causes of your inflammation and eliminate them.
     Energy Medicine is probably the best field in the Holistic Health and Healing Arts to
    facilitate this. (You will have to seek someone your area-if you want me to look into it
     for you, I'll need to know your location (town or city and state)
2. For short term relief from your symptoms and gradual general improvement.
  a. Your thoracic duct is a very instrumental part of your lymphatic system.
      Proper breathing is vital in order to engage this duct (the largest lymph vessel)
      Look up "breathing for thoracic duct activation"
  b. Try "dry brushing" for lymphatic drainage. Just do a search.
  c. Make sure your mineral and electrolyte levels are not low. Any deficiency there will
      contribute greatly to your issues!  If you're not absorbing and assimilating efficiently,
you will have to look at alternative vitamin, nutrient, mineral delivery (see 1a).
      As I do not know what testing you've done so far, I'm only speculating.
  d. Any type of activity, slow walking, non-straining easy exercises, whatever you are able to do, will benefit you greatly.
  e. If you are on diuretics, for the excess water you are retaining, my opinion is that you are  exchanging short term benefits with long term consequences.
  Your cellular energy is suffering greatly from this water imbalance.
  Intracellular water levels are high so your cells are in a wet state .- to put it simply.
  And that state is what promotes disease. Your cells are oxygen and energy deficient.
  Please discuss this with your doctor, as it may be not in your best interest to be on
diuretics. It seems standard protocol, however, everyone is not the same, so it's good to explore it further with him-if this is the case.

These are some safe suggestions- within the medical "norm"- Please take your time to
research these thoroughly.
It would be ideal to find a N.D. in your area who:
1. Works with Energy Medicine Modalities (Energy Psychology, Muscle Testing, Meridians etc.)
2.  Is set up and does I.V. supplementation Therapy.
3.  Has a good understanding of serious Lymphatic System conditions.

  For now, I hope this is helpful, for the time being.
  Please be patient. Your improvement will take some time.
  I will be in touch with you again (soon)
  And you may message me anytime you need.
  Blessings to you and your family.
  Nikodicreta

  

[ru37]

I am very willing to do what ever it takes to find out why, and to make this desease go away. I feel miserable 24/7...I have a young son, and this has pretty much crippled me to where it is affecting everything I do, example: cant bend to tye shoes, walking with a limp because of the water pressure and pain, went from size 12 to 16!...I could easily go on! If you have anything to share or any advice, (because my Dr. says that this desease is very rare, even he is having to go elsewhere for answers!....I NEED and desperately want to find someone who is familiar with this). I am all ears and very open-minded.

[TheLightSeeker]

Hey ru37.

  Any time there are is leakage of fluids from one body system into another,
usually it results in a complex situation that presents a true challenge for the patient and the doctors alike.
I'm glad that you discovered Aloe vera and it's helping.
You may also consider Extra Virgin Coconut Oil (EVCO), as it would be your safest fat to use  and a recommended supplement for your condition.
As a MCT it has the  the chemical structure to withstand the internal temperature in the body without any alteration , unlike all other oils -with the exception of palm kernel oil,
another MCT- that become pro-inflammatory when exposed to temperatures over
20°C. EVCO  is converted in the liver and used directly for energy.
It is anti-fungal, anti-microbial, anti-viral and anti-parasitic.
Please research this option at the coconut research center website.
Dr. Bruce Fife is the expert on this  and author of 5 books on coconut oil . You may want to get in touch with him for your PIL. ( I'm assuming it is Primary).
Next step is to find someone that can determine the cause of the malformation or dilation of  those lymphatic channels that is resuling in your PIL.
And that is the million dollar question.
  There other approaches that go way beyond the scope of the Gastroenterology Community, and should you be interested and very open minded, then please message me.
Blessings
Nikodicreta