Cerebrolysin

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Mesut
Posts: 40
Joined: Sun Oct 02, 2011 5:52 pm

Cerebrolysin

Postby Mesut » Mon Apr 15, 2013 5:51 am

Hi

I wanted to ask if anyone here has experience with a drug called Cerebrolysin (CL).
I am a Turkish , living in Germany, and hence I am member of several German and Turkish autism forums.
In the Turkish forum, there is a discussion that continues since some time about a drug called Cerebrolysin.
While it is a drug intended mainly for Dementia , Stroke and TBI, there are some families who used (and they got prescribed this from their neurogist) CL for their autistic children.
There is another very similar drug called Cortexin from a russian pharma company.
These families have mainly used both of them.

While some parents are heavily criticising (we could also say "attacking") usage of CL, what I see from the responses is that children who use CL show significant improvement.
Maybe not all but based on the feedbacks I would say the majority is seeing improvement.
There is even a boy who is now almost recovered (I don't know the boy in person but I see his mothers posts as well posts from other mothers who know the young boy personally).
The recovery is not just due to CL, but I know that these families also use Burinex.
Burinex (or Bumetanid) was also mentioned in the studies in the past (viewtopic.php?f=6&t=29560&p=200698&hilit=bumetanide#p200698)

IMO, the defensive (or attacking) behavior of the parents are due to especially one mother who is promoting CL very aggresively.
Parents do not like if someone without a medical background is promoting a drug in such a intrusive way.
A second reason might be that studies/usage of CL and Cortexin are mainly from russian countries.
I feel a kind of reluctance for drugs coming from those countries.

During a recent MRI, we found out that my son has a hypoxic-ischemic encephalopathy (HIE) in the parieto-occipital region (the area just above the neck towards the ears).

I contacted the company who is manufacturing CL and asked them regarding the safety of their drug because I heard that it may also increase the risk for epilepsy.
Their response is that the risk that it triggers epilepsy is <1/10.000 and they also stated that HIE is among the indications of the drug.
They also sent me a compilation of the studies in a PDF form , but I think I cannot attach it here (at least I don't know howto).
Most likely we will be using CL as well in near future.
However, doctors are very much reluctant to prescribe something that they are not familiar with.
I shared these CL findings with another mother in Germany and she got it prescribed from her DAN.
The difficulty started when she wanted to make the shots.
The pediatrician refused to do the shots and she had to drive 40 km to another doctor who agreed to do the shots (intramuscle).
These are daily shots for consecutive 10 days and then a break of 6-8 weeks and then a second round and so on.

Has anyone used CL and can share his/her experience ?
I actually also wonder why it is not known and used more widely since the studies and the feedbacks so far are very much promising.

Here is a link of a review of the various CL studies, which provide a good summary.

http://wiseyoung.wordpress.com/2009/02/10/271/

Mesut

FatherOf2
Posts: 1622
Joined: Mon Mar 11, 2013 1:37 am

Re: Cerebrolysin

Postby FatherOf2 » Mon Apr 15, 2013 11:15 am

Thanks for bringing it up. I've never heard about CL or other drugs mentioned in your post. It is very interesting to know how DAN! doctors treat ASD in other countries. I can only hypothesize why these drugs are not used in US. FDA has a strong power of what can be used and what cannot be used by licensed doctors. A certain drug can go through an expensive and lengthy approval process for just one condition like Alzheimer’s Disease and also be applicable to other conditions like ASD, but legaly could not be used for those other conditions until a separate approval process for these conditions is completed. But pharma companies put their money where the biggest market is, which is Alzheimer’s Disease (10% of all people over the age of 65) and not ASD (~1%). That is why studies for these other, more rare conditions are never conducted. US doctors, even DAN!, will rarely prescribe drugs that haven't been approved for a certain condition in fear of losing their license or being sued (remember, USA is a sue-happy country). That is perhaps why other countries are ahead of US in finding cures for different diseases.

You will notice that people here use mostly over the counter supplements like vitamins (B12, folate, CoQ10, carnitine, etc) and drugs like DMSA for chelation, which is also OTC. Anti-bacterial and anti-fungal meds are approved here in USA for treating gut problems. So, there is no legal problem in using them. However, these drugs may be more harmful than the ones you mentioned, but they are APPROVED. There are some odd treatments like LDN and oxytocin, both by prescription as far as I know. But, I am not sure if they are approved by FDA for ASD.

Mesut
Posts: 40
Joined: Sun Oct 02, 2011 5:52 pm

Re: Cerebrolysin

Postby Mesut » Mon Apr 15, 2013 3:22 pm

FatherOf2 wrote:It is very interesting to know how DAN! doctors treat ASD in other countries.

The DAN doctor is practicing in Germany. There are (only) two doctors in Germany following the DAN protocol.

I think it will always be difficult and challenging to find a drug for autism, as autism is a clinical condition based on symptoms and behavior.
Therefore, drugs are developed and get approval for parkinson, stroke, alzheimer which can be diagnosed also by other criteria than behavior.

As I said, in Germany there are only two doctors who follow the DAN protocol, and 1-2 others who have experience with autism (I mean the connection to diet, environmental toxicity, gut, metals etc).
The other doctors are all Psychiatrists and Neurologists who say that autism is not treatable (the only thing they recommend is behavioural therapy).
From this perspective, Germany is far behind USA. Even Melatonin cannot be purchased here without a prescription from a doctor.

I find it odd that the treatment one is getting, is depending on some bureaucracy of that country.While a drug is approved in a country, it is not approved in another one. How can this be ?
E.g. Burinex, is at least available if you can get a prescription but in Turkey it is not approved at all.
Its a diuretic drug.
Is turkish edema different than German (or US) one ???

anyways, I didn't want to dive into these things.
I just wondered if someone here has experience with CL, Cortexin and Burinex (Bumetanide).

Mesut
lab tests

dabaxter
Posts: 4052
Joined: Wed Nov 14, 2007 12:50 pm

Re: Cerebrolysin

Postby dabaxter » Tue Apr 16, 2013 12:19 pm

M,
Thanks for posting this. If it works, I'd be willing to try it if it works. I've never heard of this drug. Study data looks pretty good:

http://www.ncbi.nlm.nih.gov/pubmed/12872620
Nineteen children with childhood autism and 8 with Asperger's syndrome aged 2-8 year, were treated with cerebrolysin (CL) in inpatient clinic. All the patients received 10 microinjections (intramuscularly and perinervously) of 0.1 ml CL daily during 5 days. Clinical study was combined with device estimation of cognitive functions and communicative skills. CL therapy resulted in improvement of cognitive functions (expressive and receptive speech, fine motoring, playing). Positive effects were revealed in all the patients with Asperger's syndrome and in 89% of the patients with childhood autism. Any negative effects were not found. With regard to cognitive functions development, therapeutic efficacy proved to be more pronounced in the patients with Asperger's syndrome as compared to childhood autistic group (p < 0.005).
$5 off iherb.com. Use:REW815/$5 off pureformulas.com Use:RJNXCX

Kastania
Posts: 864
Joined: Tue Apr 07, 2009 9:13 am

Re: Cerebrolysin

Postby Kastania » Wed Apr 24, 2013 2:41 am

Mesut

I only have second-hand experience of Cerebrolysin as I have never used it myself. It is one of those treatments which is far down on my list of things to try since my daughter has done badly with other nootropics in the past, so it's not something I have rushed to try. She also has low seizure threshold and I've read this is contra-indicated with Cerebrolysin. I don't think there are many DANs in the US who are familiar with it or are using it, so there doesn't appear to be mcuh feed-back about it's use in autism It seems to be more popular in Europe.

I know two children who have used it. The first is very high functioning and his parents told me they saw no improvement with it, but in my opinion the boy is so high functioning that I don't know exactly what the parents were expecting to see.
The other boy did see some cognitive improvement but it did not bring on speech. I have seen a video somewhere of a young girl who apparently did great of Cerebrolysin - so I can understand you wanting to pursue this line of treatment.

Good luck and let us know how you get on if you decide to try it.

Kastania
Posts: 864
Joined: Tue Apr 07, 2009 9:13 am

Re: Cerebrolysin

Postby Kastania » Wed Apr 24, 2013 2:42 am

Mesut

I only have second-hand experience of Cerebrolysin as I have never used it myself. It is one of those treatments which is far down on my list of things to try since my daughter has done badly with other nootropics in the past, so it's not something I have rushed to try. She also has low seizure threshold and I've read this is contra-indicated with Cerebrolysin. I don't think there are many DANs in the US who are familiar with it or are using it, so there doesn't appear to be mcuh feed-back about it's use in autism It seems to be more popular in Europe.

I know two children who have used it. The first is very high functioning and his parents told me they saw no improvement with it, but in my opinion the boy is so high functioning that I don't know exactly what the parents were expecting to see.
The other boy did see some cognitive improvement but it did not bring on speech. I have seen a video somewhere of a young girl who apparently did great of Cerebrolysin - so I can understand you wanting to pursue this line of treatment.

Good luck and let us know how you get on if you decide to try it.

Kastania
Posts: 864
Joined: Tue Apr 07, 2009 9:13 am

Re: Cerebrolysin

Postby Kastania » Wed Apr 24, 2013 2:42 am

Mesut

I only have second-hand experience of Cerebrolysin as I have never used it myself. It is one of those treatments which is far down on my list of things to try since my daughter has done badly with other nootropics in the past, so it's not something I have rushed to try. She also has low seizure threshold and I've read this is contra-indicated with Cerebrolysin. I don't think there are many DANs in the US who are familiar with it or are using it, so there doesn't appear to be mcuh feed-back about it's use in autism It seems to be more popular in Europe.

I know two children who have used it. The first is very high functioning and his parents told me they saw no improvement with it, but in my opinion the boy is so high functioning that I don't know exactly what the parents were expecting to see.
The other boy did see some cognitive improvement but it did not bring on speech. I have seen a video somewhere of a young girl who apparently did great of Cerebrolysin - so I can understand you wanting to pursue this line of treatment.

Good luck and let us know how you get on if you decide to try it.

FatherOf2
Posts: 1622
Joined: Mon Mar 11, 2013 1:37 am

Re: Cerebrolysin

Postby FatherOf2 » Thu Jan 23, 2014 4:13 pm

Any updates on Cerebrolysin or Cortexin. I came accross foreign forums where moms reported great improvements in their autistic children (speech etc) from injectable Cortexin. One said that her son recovered from ASD after two rounds of 10 shots (10 shots a month + 1-2 months of rest = round). Some parents give it to healthy children who don't want to do homework :D Unfortunately neither of these two meds is available in US. But you can buy them at your own risk from international drug stores.

Cortexin is a liofilizat obtained by acetate extract from the bark of the brain of cattle or pigs, which contains low-molecular active neuropeptides, the molecular weight of not more than 10 000 dalton, sufficient to penetrate through hematoencephalic barrier.

Cerebrolysin is an injectable protein-based solution that contains small-molecule biologically active neuropeptides. Neuropeptides are small protein-like molecules used by neurons to communicate with each other. They work as neuronal signalling molecules and influence the brain’s activity in a number of specific ways. They are, therefore, involved in particular brain functions like learning and memory. Neuropeptides penetrate through the blood-brain barrier and act directly on neurons. Rather than being a synthetic product, Cerebrolysin is based on natural products. It contains biologically active peptides that have been produced from purified porcine brain proteins via standardised enzymatic processes.

FatherOf2
Posts: 1622
Joined: Mon Mar 11, 2013 1:37 am

Re: Cerebrolysin

Postby FatherOf2 » Mon Feb 03, 2014 7:22 pm

Quite interesting testimonials about Cerebrolysin http://www.longecity.org/forum/topic/28171-cerebrolysin/page__st__30
My husband is an M.D. in Mexico and I work in his office. Cerebrolysin is approved for use in Mexico and we have had some amazing results with it on our patients. We do not use the I.M injections, it is just not as effective. A course of treatment in our office is an intravenous solution 5 times a week for 4 weeks. We have people that come here from the U.S. and Canada just to have this treatment. The last patient [before the treatment] had stopped talking, he would answer you if he was spoken to but did not initiate conversations. He had stopped eating, his wife had to force him to eat. His memory was so bad he could not find his way to the bathroom in his own house. After the first few treatments Mark began to eat again, a huge relief for his wife. He has progressed rapidly and has even started playing cards again, his favorite passtime. Yesterday when Mark came in for his treatment I was sitting at my desk and he Smiled this big smile and said "Hi Honey". I swear, tears came to my eyes and I said " Hi Mark, how are you?" He said " I'm fine Betsy, good to see you". This sounds like such a small thing but for him to actually speak without being spoken to and even remember my name was incredible. His wife used to sit in the waiting room and wait for him but now she can tell him to meet her at the coffee shop or the yarn store where she sits and knits with her friend, something that was impossible 5 weeks ago. I am using Mark as one example, but I could sit here all day and write about people that have been helped by this amazing treatment. Results vary, but in our office they have always been positive. I read everything I can about cerebrolysin, but in my position I can testify first hand about what it really does. Although cerebrolysin is very safe to use I believe that it should only be administered by a doctor. It is a shame that this drug is not yet USDA approved in the U.S. , It is all about money. This treatment is not making us rich and most doctors in the U.S. are only interested in what is going to make them wealthy. Aside from that, there is another reason it is not widely used in the U.S. ....The fact that it is not USDA approved does not mean that it is illeagle to use, but most doctors insurance company will not permit them to use a non USDA approved drug. I have found one clinic in the U.S. that does use it, but I do not know how much they charge. I would like to know of any doctors in the U.S. that use it....I don't know if that would violate any policy here. Anyway, Cerebrolysin WORKS, people, for any form of dementia, ADD and stroke.

Mesut
Posts: 40
Joined: Sun Oct 02, 2011 5:52 pm

Re: Cerebrolysin

Postby Mesut » Mon Feb 10, 2014 12:00 pm

This late summer we tried the Cortexin shots (10 shots in row IM) with my son.
I cannot say that he showed improvement after the shots.
He already had a dramatic jump just in the weeks before, when we did the intensive sports therapy (see my other post).
So, it was difficult for me to see if Cortexin brought some additional gain or not.

We wanted to do now the second round with cortexin but I can't find a person to do shots.
I could maybe do it myself but the needle is 4-5 cm , hence i am a little worried to do anything wrong.
Our pediatrician refused to do the shots since Cortexin is not approved as medicine here in Germany :(

Mesut

FatherOf2
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Joined: Mon Mar 11, 2013 1:37 am

Re: Cerebrolysin

Postby FatherOf2 » Mon Feb 10, 2014 3:53 pm

Mesut wrote:This late summer we tried the Cortexin shots (10 shots in row IM) with my son.
I cannot say that he showed improvement after the shots.
He already had a dramatic jump just in the weeks before, when we did the intensive sports therapy (see my other post).
So, it was difficult for me to see if Cortexin brought some additional gain or not.

We wanted to do now the second round with cortexin but I can't find a person to do shots.
I could maybe do it myself but the needle is 4-5 cm , hence i am a little worried to do anything wrong.
Our pediatrician refused to do the shots since Cortexin is not approved as medicine here in Germany :(

Mesut

Thanks. I found from one of the forums that Cortexin can also be used as a nasal spray. According to its manufacturer, you should take the powder from an ampoule and mix it with 1ml of sterile water for injections (as if you are about to do injections). Then spray the mixture into nostrils several times a day until all is gone. The treatment course is 10 days (10 ampoules). The dose is 0.5mg/kg for patients weighing up to 20kg and fixed 10mg for heavier patients. Some Russian neurologists claim that intranasal sprays are as effective as IM injections. You have to be careful with fake Cortexins, which apparently is a problem in Russia (lots of fake meds sold by shady pharmacies). I am trying to get Cortexin directly from its manufacturer. No reply yet.

Mesut
Posts: 40
Joined: Sun Oct 02, 2011 5:52 pm

Re: Cerebrolysin

Postby Mesut » Mon Feb 10, 2014 5:04 pm

Hey, this is good news.
I didn't thought about this.
Do you remember on which Forum you have seen that message.
I will also ask the manufacturer.

I got our Cortexin from a pharmacy in Kiev/Ukraine.

cheers
MEsut

FatherOf2
Posts: 1622
Joined: Mon Mar 11, 2013 1:37 am

Re: Cerebrolysin

Postby FatherOf2 » Mon Feb 10, 2014 6:25 pm

Mesut wrote:Hey, this is good news.
I didn't thought about this.
Do you remember on which Forum you have seen that message.
I will also ask the manufacturer.

I got our Cortexin from a pharmacy in Kiev/Ukraine.

cheers
MEsut

In Russian (you need to use a good translator): [url]www.sdvg-deti.com/t287p645-topic‎[/url]
Сегодня вечером от разработчиков Кортексина и пептидных биорегуляторов, в лице зам.директора по научной работе и новым технологиям, заслуж.деятель науки РФ, профессор, доктор мед.наук Спб института биорегуляции и геронтологии СЗО РАМН, я получила следующую инструкцию по применению препаратов, из расчета на моего ребенка, 10 лет, 35 кг веса:
"Кортексин представляет собой сухой препарат во флаконе, воды следует налить около 1 мл - т.е. покрыть порошок и растворить его. Это количеставо надо закапать в течение первой половины дня - после 18 часов ребенку лучше не капать препарат, потому что иногда кортексин у легко возбудимых детейспособствует плохому засыпанию. Курс кортексина обычно составляет 10 дней, его можно уменьшить до 5 дней.

Also here http://noinsult.ru/lecheniya-insulta/ (use Google translate)
V. Havinson professor, one of the founders cortexin, argues that the drug now has the highest value of all cytomedine. By healing properties similar preperat CEREBROLYSIN, but other than that its efficiency is three times higher and it is very well established in practice remedy. Result of treatment cortexin much higher even with his shortened course of treatment - 10 injections. In addition korteksin used not only intramuscular injection but also in the form of a nasal spray for intranasal injection. And already the practice, in the second method to achieve immediate effect. Immediately after intranasal even one dose cortexin passes headache, fatigue, feeling withdrawn, generally clearer head, normal blood flow in the brain. And the most important thing is that korteksin as all cytomedines and tsitaminy (dietary supplements), has no side effects and contraindications.

Also here http://www.mediasphera.ru/uppic/Zhurnal%20nevrologii%20i%20psikhiatrii%20imeni%20S.S.%20Korsakova/2011/12/13/NEV_2011_12_068.pdf
We studied antiepileptic effects of cortexin administered in doses 0,015, 0,15 and 1,0 mg/kg intraperitoneally in solution or intranasally in the complex with nanoparticles in amodel of acute and chronic convulsions in rats induced by pentylenetetrazole. In the model of epileptic status, the long-term preliminary administration of cortexin had no effect on convulsions while in the model of chronic convulsions (temporal epilepsy), cortexin had a marked dose-dependent antiepileptic effect. The influence of cortexin on neuroplasticity and its clinical potential are discussed.

Cerebrolysin can also be administered intranasally, but be careful because it contains novocaine: http://rsmu.ru/fileadmin/rsmu/documents/science/uchenii_sovet/news_2009_september/kataev_autoreferat.doc
It was established that intranasal cerebrolysin leads to a higher neuroprotective effect with the experimentally impact minutes and chronic cerebral ischemia in rats.

Mesut
Posts: 40
Joined: Sun Oct 02, 2011 5:52 pm

Re: Cerebrolysin

Postby Mesut » Wed Mar 19, 2014 12:52 pm

Hi Fof2

I tried the nasal form of Cortexin in the last weeks.
There is a slight improvement in verbal expression and I think also in understanding but there is no wow effect.
So, I cannot really link this to Cortexin.

We are also doing our intensive sportstherapy in parallel and I believe the improvements are more related to that, rather than Cortexin.
Intensive sports is great. Its the far best thing we did so far.

Mesut

VisualVii
Posts: 2
Joined: Mon Dec 15, 2014 8:32 am

Re: Cerebrolysin

Postby VisualVii » Tue Dec 16, 2014 6:17 am

Hi Mesut,

I'm also Turkish and living in Germany. Recently(few months ago) one of my best friends in Turkey had an Heart Attack and
was without air supply until he was reanimated again. But due to few minutes of absence of Air Suplly he has lost most of his cognitive functions.
I was last week there and saw him also talked to his mother.
It's very sad situation. His mother spoke to me about the Cortexin.
Now...Do you know where I can buy Cortexin in Germany without having risks buying a fake product? How did You get the medicine here in Germany?

Thank You for your Support
Metin

VisualVii
Posts: 2
Joined: Mon Dec 15, 2014 8:32 am

Re: Cerebrolysin

Postby VisualVii » Thu Dec 18, 2014 11:48 am

Hi Mesut,

Thanks for your PM and all the Information. For some reason I cannot answer you through PM probably because I'm a new User.
Anyway...I wish you and your Son all The Best.

Thanks
Metin

FatherOf2
Posts: 1622
Joined: Mon Mar 11, 2013 1:37 am

Re: Cerebrolysin

Postby FatherOf2 » Wed Nov 08, 2017 6:57 pm

I am reading overwhelmingly exciting results of using cerebrolysin in autistic children in some foreign forums. It is made in Austria from pig brain and needs to be injected into muscles. Has anybody tried to get it in USA?

Cerebrolysin is a mixture of peptides purified from pig brains, including (and not limited to) brain-derived neurotrophic factor (BDNF), glial cell line-derived neurotrophic factor (GDNF), nerve growth factor (NGF), and ciliary neurotrophic factor (CNTF).


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