Do you have an opinion on Lorenzo's Oil? Do you think it works? Or, do you think it is a complete waste of time? Please share your thoughts below.
To help you, please read page 2 of a research paper in the International Society of Neuropathology about Lorenzo's Oil: aldlife.org/wp-content/uplo...
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I am heterozygour carrier(after DNA/FUNDEP/Brazil). After diagnoustico in 1995, my brother Carlerio(AMN) has been triatment initial in Buenos Aires/Argentina with T.Cel vacination, (intravenous imonuglobulins) and Interferon-Beta(subcutaneus) in combination with dietary and therapy -Lorenzo's Oil and after exchange by Lovastatina. For Carlerio the Lovastatatina have been succeful and efficacy to normalize very-long-chain fatty acids. Carlerio is superviioned by multidisciplinary team, including nutricionist in HC(Hospital de Clínicas de |Minas Gerais/Brasil). The doctor Eugenia Valadares(Neuropediatra) is our friend doctor.
My son was on Lorenzo's Oil for seven years. It did lower his VLCFA's. I would like to think that it kept the childhood cerebral form of ALD from coming out, but do we truly know? I do know of some instances where boys were on it and it didn't work and the childhood cerebral form still presented itself. I don't know if we will truly ever know if it helps or not, but I like to think that it did.
Thank you Penelope and lellety for sharing your experience. I am really glad to hear you've got some positive experience of using Lorenzo;s Oil.
Hi my youngest son was on the oil after being diagnosed with ALD for 6 mths, unfortunately he progressed to develop the cerebral form of ALD, my oldest son who was diagnosed with ALD has never taken the oil he is now aged 25ys & still stable with Addisons, maybe if he had of taken the oil for the past 15yrs we would of thought it was the oil that prevented further symptoms so unsure really.
Has anyone suggested your older son take the oil? I have adult onset ALD and im now 30 years old. Been taking the oil for over 5 years now and it has lowered my long chain fatty acids and these are in normal range now. It's horrible, horrible stuff but it may help me long term which is most important thing. I've felt less tired and had less headaches while on the oil which is a nice side effect.
Thanks Justin for sharing your experience. It's good to see that Lorenzo's Oil is helping to reduce your VLCFAs.
Two of our three sons were diagnosed in 2011 with ALD. Our eldest was put forward straight away for BMT so didn't take LOil but our middle son started the oil in Sept 2011 but on the advice of consultant at GOSH we were told not to follow the low fat diet. His VLCFA have fallen and his scans remain clear. He is happy to take the oil so we are going to continue with it. ( feel like we are doing something ) To date our sons BMT has been successful with returning to full time education and having very positive scan results. Our youngest son thankfully is clear of this faulty gene.
We were invited to participate in a Lorenzo's oil study when my son was two and had no symptoms. After reading up on it and looking at survival rates on BMT for children (60%) and adults (30%) we decided against it. We didn't want to postpone the onset only to have a lower survival rate as an adult. We also were concerned with the quality of his life on a strict low fat diet. He had a BMT at 4 and has had stable MRI's since.
Thanks everyone for sharing your experience. It is really good to see the different experiences families have of using Lorenzo's Oil.
I am an asymptomatic boy with AMN, and I take Lorenzo' s oil everyday. I seriously hate it because of its taste, so I would like to ask you people who take it, how can you reduce its taste ? I tried mixing it with many things but it didn't work
Hello Andrew,
Kim Apps on Twitter suggests a cup of orange squash, with a polo.
Please tell us how it tastes.
Double straw method works for my son. Favourite drink (strawberry milk shake) in one cup with a straw then measured out L Oil in another with a straw. He then sucks both together. Hope it helps.
Do you warm it up first? Best thing I ever discovered! Otherwise it's like glue and tastes worse! I boil a kettle, put the oil jar in a Pyrex jug and surround with boiling water. Wait 15 minutes shake and make sure it's settled. Repeat if there are still bits floating in it! Wait 15 minutes again to cool off as hot oil is even more horrible! Now get cold water and your favorite squash, measure out your oil, mix fast into squash with spoon then down it! And always have a nice drink next to you to help get rid of taste also. I then normally use mouthwash after if I still have the taste. All of these things help me although it is still hard to stomach and I sometimes feel sick after having my oil. Hope this helps.
Yes I also warm the oil first then double straw method 
Thanks mrspolarbear for sharing your experience! Glad to see many families are using the double straw method when taking Lorenzo's Oil.
Hi. Both my boys take L.oil. My eldest son, now 15 developed his own style of taking the oil. We call it the double straw method. He puts a straw into the pot of L.oil, another straw into some strong juice in a separate cup. Sucks on both straws at once and says he does not struggle with the taste. I hope this helps x
Thanks CoopTroop for sharing your experiences. I hope your experience will help other people when taking Lorenzo's oil. Does sound like an interesting technique.
Thanks a lot Sara, it was really informative and useful
That's OK. Glad it helped.
Hi Hanika,
Thank you for the response. You can buy Lorenzo's oil by getting in touch with Nutricia. Contact details: nutricia.com/footer-english... or
medicalnutrition@nutricia.com.
However, please be advised that Lorenzo's oil isn't clinically proven to work. I am sure you have probably read the journal in the International Society of Neuropathology: aldlife.org/wp-content/uplo...
About testing for VLCFAs, you can determine if VLCFAs in your body has lowered by undergoing a VLCFA test.
If you have any other questions Hanika, please get in touch.
Hi folks. Brand new to this site. My boys have taken the oil for 6 and 12 years now and have remained on the low fat diet which was a condition of getting it in the US. We can't help but think it has some benefit. I know some boys have presented with symptoms while on the oil but it's hard to get any details on how well they were able to follow the diet and oil guidelines. BMTs are also not a proactive option here given the mortality rates and our Dr's won't recommend it unless there is a change in MRI results. LO is now available under "expanded use" now that the LO Study has officially closed. This means more boys can can access in the US. through KKI or Dr Raymond at U of Minnesota.
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Will you continue to wear your face mask?
I have 3 sons who have just been diagnosed with ALD
Hi, I am looking for some advice on follow-up of asymptomatic men with ALD. My brother is 32.