I had the privelege of meeting Dr Diego on his recent visit to New Delhi for some sleep conference. I have to say WHAT A MAN!!!
For the first time in my life, I felt that RLS is something that can be worked around. He gave me hope. Explained the entire disease, the causes of it and how to work to make it better. Makes me wonder what life would be like if I was under his supervision. Such a fantastic person.
Among his suggestions, one was the standout for me. He said that ferretin above 100 is also sometimes not enough. He told me that if I were to get an IV Iron, the target be should to have my ferretin level as high as 400 and then expect some considerable improvement after some 3-4 months.
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Dont forget that Dr Diego was working on a different delivery system of iron to the brain for those who couldnt achieve the required levels by pumping up the level in the blood. Ie patients with impermeable blood brain barriers. It might be worth emailing him directly to see if he could help. Nothing like a holiday in Spain to fix the RLS. (we hope)
I have copied a post from Chilandres who was treated remotely in Chile by Doctor Diego Garcia-Burreguero in Spain.
Sounds like the first challenge would be to reduce your ferritin to something "sensible". I have read of someone making lots of blood donations but perhaps they just use leeches!!!
Iron in the Brain not in the Blood 20Jan19
Chilandres•
Hi, first of all sorry for all my mistakes but english is my second language and theres a huge medical and technical terms so treat me gently...🤗
I’m suffered rls since my 13. I’m 48 now. Just 6 months ago i found a doctor who really are an expert on rls. But I don’t find it in my country. I live in Chile and the doctor works in Spain. So he treat me through Skype.
Believe me. He knows and inverigate about rls more than any doctor in the US or UK.
His name is Diego García-Borreguero. Google it and you will found a lot of papers and studies results. Unfortunately for you the most are in Spanish.
Ok, go to my case. I have very very hi iron and ferritin levels on my blood. About 650. So i need lower levels because it’s dangerous. But i made all the exams and I don’t have any issue in my hart and liver.
But with this hi levels of iron i still have a severe rls symptoms.
So, he made me an exam with doctors here in Chile that can measure the iron levels in the Brain. And the result was that i have almost nothing of iron in my brain.
And this is the point that almost every doctor that treat rls don’t know. Is not the iron in the blood, is the capacity of the brain to absorb the iron in the blood. They even don’t know that exist an exam that measure that.
Si now I’m reducing my ferritine levels to lower than normal to get an special iron infusion with some componet that help to be absorbed by the Brain and check about 3 moths later if the iron levels in the Brain are higher.
So that’s it. Ask your doctor or find a good one who really now about rls and the new discovered treatments. And seriously, it could be everywhere in the world.
Graham, I remember this conversation well. As you brought up the subject, would you message Chilandres to ask what happened next? Which iron did she use eventually, and how did she reduce her iron levels - chelation or blood donation?
And did she have a spinal tap to measure brain iron?
This is definitely a story we need to hear the end of.
I have messaged Chilandres and will pass on any reply I get.
I remember that the feritin measurement was made with a process called "trans cranial ultrasound" I haven't found anyone in Australia who has heard of it.
The following is his reply about a year ago just for interest.
"Hi, i did not take the iron infusion yet. With my levels of ferritin or iron, I couldn’t put more iron in my body. So now I’m trying to lower the iron levels, and then i could get the iron infusions.
About the iron test I don’t know how to say it in english so I’ll do my best. Maybe i translate it literal. It calls ultrasound transcraneal. Its an ultrasound like the one it’s make to see the babys but in a especific place in the head and is through the skull and the can see and measure the iron levels in the brain with some especific calculations. I hope i explained my self.
Here is an interview made to my neurologist in the tv news. She work in Chile with the doctors in Spain. The only thing is that all is in spanish so i don’t know if you will Understand. In the page click the video. From the minute 3:40 they talk exactly about the test.
It is called 'Brain parenchyma ultrasound (black substance)', a ' neuroimaging technique, which allows an accurate diagnosis, excluding other neurological disorders. It is based on the direct measurement of brain iron deposits.'
'If all this is combined with eco-dopplertranscranial techniques (a non-invasive technique that is easily performed in the clinic), we can raise the chances of success up to 70%.'
Great work. Thankyou. Perhaps Dr Diego García-Borreguero has developed the method to determine the real amount of ferritin in the brain and then add the right amount as required. It seems that the doctor is willing to help international patients by remote control so all we need is a willing neurologist in every major city.
I think I will start talking to a few local neurologists and see what response I get. I'll bet that no matter how little work is required it will cost a few thousand dollars!
On the other hand maybe no one will touch it because the practioner might not be able to get insurance cover, a gloomy thought.
The way its described it appears to be an IV infusion with some extra or different products in it. I can imagine that taking years to get approval in Australia.
I will write to the doctor and ask what it would require to treat a patient in Australia and then see if we have the capability here. A holiday in Spain sounds tempting. I have friends in Burgos so I could combine pleasure with medicine. If it worked it would be combining pleasure with pleasure!
Dr B, now recommends ferritin level to be 300. Its good to find out if that would work for you. But its not always the reason for all RLSers. Anything else that he said that helps RLS, that we should know about.
How wonderful. I've got his book RLS/WED Long-Term Consequences and Management. It's great. I'm bringing it with me when I see my consultant for my RLS on Wednesday.
Hidden Madlegs1 He said that considering the treatment I'm on there's a 30% chance that post infusion (if my numbers are increased to the levels he suggested) I might not need any medication, 30% chance that I might need but little and 40% that its still going to be up and down but he said that it is not something I should be thinking about right now.
However, without increasing iron levels, he said that apart from oxycodone, it is unlikely that any medication would work for longer term.
Now the difficult part for me is to find a doctor who is willing to listen to all of this.
I had the most wonderful RLS experience yet and then last night was troublesome but I have a renewed sense of hope.
rls-insomniac I hope you find considerable relief.
Note that Dr Buchfuhrer says that if your ferritin drops dramatically after the infusion then the doctor should be looking for a reason such as a source of blood loss somewhere in the body. According to him the usual result at Johns Hopkins is that once they raise the ferritin level with an IV it stays there but some people were coming back n 6 or 12 months with a return of the RLS and a drop in their ferritin. My memory is muddled but I think the implication was that they went looking for a reason and found something causing blood loss.
Oh yes he did. Ferrinject I think it was along with carboxymaltose to reduce the side effects if any. He mentioned it especially because I am too nervous about IV Iron. The hysteria around here for IV Iron makes you feel like that.
He did mention about our ferretin levels dropping. He said that from this day, make sure you're always getting tested and knowing your iron levels every three months. He did mention that in case IV Iron doesn't work, LanaCSR he has some tests or something for finding out the iron levels in the brain.
One of the things that he did advise me was to not increase the DA and rather not even decrease it because he said that it is only going to increase the discomfort. I asked about stopping it and he said that be very cautious and make sure that I'm in the best of my mental and physical health because it does get very difficult.
Does anyone know the name of the procedure that puts the iron directly into the brain? It seems that the experts say just an iron infusion won't work because the iron doesn't reach the part of the brain it needs to. So if our local doctors could know what test to see how much iron is getting into our brain and then know what procedure will get the iron into the right spot in our brain then we would all be free of this torture. Or am I simplifying this too much?
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