41 replies to this topic

[longcity90]

Goodmorning everyone! I hope to get help writing in this thread.

 

I contacted "Turnbuckle" privately but I wouldn't want to bother him too much ... so if anyone feels able to help me I would be really grateful.

 

I am 29 years old and I live in Italy ... country that unfortunately in front of mitochondrial pathologies and energy metabolism is not helping me as I thought.

 

Since childhood I developed neurological and physical disorders to which no doctor could give me an answer.

 

I have continuous drops and unexplained weight gains (in the last period I am only gaining weight) regardless of how much food I introduce and what is done, energy "crashes", language compromised speech difficulties, sudden and inexplicable changes of personality / mood, every day is different and I accuse strong mental fogginess accompanied by large drops in physical energy, ability to work and logic compromises, loss of motivation, loss of empathy and emotions, edema and loss of muscle tone, reduced field of vision, increase in eye pressure. ... I lose the sense of reality and enter a psychotic state.

 

My blood tests are apparently all regular and in the range of the laboratory ... even the hormones (Testosterone, Estrogens, Vitamin D, Cortisol, Insulin, Thyroid) but B12 and folates are high. Homocysteine 11.7.

 

Only a year ago thanks to the internet I discovered the possibility of having something at the level of the energy transport chain in mitochondria.

 

Someone could tell me: did you make a diagnosis yourself without tests that confirm your theory? it's true, I don't have a diagnosis but the experience of 20 years of symptoms is enough.

 

In the last 5 years I have had a great cognitive and neuromuscular decline.

 

In the last 3 months I am benefiting from Vitamin E, Melatonin, ALCAR, Retinol, Ubiquinol and Bitter Cocoa (probably for Stearic Acid and Antioxidant?), B1 Thiamine HCL, B3 Niacin but only in the first month.

 

Is it possible to know which substances stimulate the various respiratory complexes? I maintain that there may be some flaws in the first and second complexes.

 

What would you do in my case? I really feel with little hope.

 

Thanks, see you soon!

[dlewis1453]

Hi Longcity90, 

 

I am sorry to hear about your health problems. I'll try to give you some advice on Turnbuckle's mitochondria protocol and on your health generally, but please remember that I am not a doctor, just a biohacker, so none of what I write is official medical advice. 

 

Thyroid: It sounds like you have already done some considerable investigations into your health with various lab tests. What specifically did you measure when you measured your thyroid? The common thyroid labs are TSH, thyroid antibodies, T4, T3, and Reverse T3. However, many doctors often just order TSH or T4 and neglect to order the other tests. I ask because your symptoms could indicate some form of hypothyroidism.  There are types of hypothyroidism that are rarer and not easily detected by simple lab tests. For example, some people, either because of a genetic defect or some inflammatory condition, have problems efficiently converting t4 to t3 within their cells. T3 is the active form of thyroid hormone. These people will appear to be normal on lab tests, but will have the symptoms of hypothyroidism. T3 is also important for the body's mitochondrial quality control process, so people who remain hypothyroid for a long time will also tend to build up defective mitochondria. One way to indirectly test whether your are hypothyroid is to take your temperature several times throughout the day. If your temperate is consistently lower than 98 degrees Fahrenheit, then you may have some form of hypothyroidism. Doctors in the past would  determine hypothyroidism through careful examination of a patient's symptoms along with their temperature. However, in the past few decades most doctors have become completely reliant on lab tests, which are only effective for measuring thyroid hormone levels in the blood, and not in the cells (which is where T3 has its effect). This approach to diagnosis does not adequately treat people who have T4 to T3 conversion issues within their cells.  Many people who have raised their T3 to normal levels experience normal energy and properly mitochondria. T3 is important for mitochondria quality control and the energy generation process within mitochondria. 

 

 

Genetic Testing: Another possibility is that you have some gene or genes that are interfering with your methylation cycle. This could be why you have high b12 and high homocysteine. Normally homocysteine is high when b12 is low, and vice versa. You could take a 23andme genetic test. Either health or ancestry version will work just fine. Download your raw genetic data from your 23andme profile and upload it into a detailed methylation program. There are several such programs. Selfhacked is a good one. Show these results to a doctor with experience in treating methylation disorders. Many methylation disorders can be fixed with supplementation. 

 

Regarding Turnbuckle's protocol: To put it simply, Turnbuckle's protocol takes our body's normal process of mitochondrial quality control and amplifies it greatly. The protocol does this by forcing the mitochondria into alternating states of fission and fusion. Normally in our bodies our mitochondria are alternating between fission and fusion at different times. Turnbuckle's protocol forces large numbers of mitochondria into extreme fission and extreme fusion all at once. If you have defective mitochondria, give turnbuckle's protocol a try, but start carefully. You will likely feel very tired during the fission stage of the protocol. If you feel tired, that is a sign that your have some defective mitochondria. You can progress through multiple cycles of the protocol until you dont feel much from the fission part. When that happens, you will know that most of your defective mitochondria have been replaced with new mitochondria. Hopefully you will feel better at this point. However, if you have some other health issue that remains unfixed, such as hypothyroidism or a methylation defect, you may continue to feel some symptoms and you may gradually build up defective mitochondria over time. You can always take turnbuckle's mitochondria protocol again throughout your life to clear out defective mitochondria. 

 

 

 

Edited by dlewis1453, 20 November 2019 - 04:08 PM.

[longcity90]

Ciao Longcity90, 

 

Mi dispiace per i tuoi problemi di salute. Cercherò di darti alcuni consigli sul protocollo mitocondri di Turnbuckle e sulla tua salute in generale, ma ricorda che non sono un dottore, solo un biohacker, quindi nulla di ciò che scrivo è un consiglio medico ufficiale. 

 

Tiroide: sembra che tu abbia già svolto alcune importanti ricerche sulla tua salute con vari test di laboratorio. Cosa hai misurato specificamente quando hai misurato la tiroide?I comuni laboratori tiroidei sono TSH, anticorpi tiroidei, T4, T3 e Reverse T3. Tuttavia, molti medici spesso ordinano solo TSH o T4 e trascurano di ordinare gli altri test. Chiedo perché i tuoi sintomi potrebbero indicare una qualche forma di ipotiroidismo. Esistono tipi di ipotiroidismo che sono più rari e non facilmente rilevabili con semplici test di laboratorio. Ad esempio, alcune persone, a causa di un difetto genetico o di una condizione infiammatoria, hanno problemi a convertire efficacemente t4 in t3 all'interno delle loro cellule. T3 è la forma attiva dell'ormone tiroideo. Queste persone sembreranno normali nei test di laboratorio, ma avranno i sintomi dell'ipotiroidismo. La T3 è anche importante per il processo di controllo della qualità mitocondriale del corpo, quindi anche le persone che rimangono a lungo ipotiroidee tenderanno a sviluppare mitocondri difettosi.Un modo per testare indirettamente se si è ipotiroidei è quello di misurare la temperatura più volte durante il giorno. Se il tuo temperato è costantemente inferiore a 98 gradi Fahrenheit, potresti avere una qualche forma di ipotiroidismo.I medici in passato avrebbero determinato l'ipotiroidismo attraverso un attento esame dei sintomi di un paziente insieme alla loro temperatura. Tuttavia, negli ultimi decenni la maggior parte dei medici ha fatto completamente affidamento su test di laboratorio, che sono efficaci solo per misurare i livelli di ormone tiroideo nel sangue e non nelle cellule (che è dove T3 ha il suo effetto). Questo approccio alla diagnosi non tratta adeguatamente le persone che hanno problemi di conversione da T4 a T3 all'interno delle loro cellule. Molte persone che hanno aumentato il loro T3 a livelli normali sperimentano energia normale e mitocondri adeguati. T3 è importante per il controllo di qualità dei mitocondri e il processo di generazione di energia all'interno dei mitocondri. 

 

 

Test genetici: un'altra possibilità è che tu abbia alcuni geni che interferiscono con il tuo ciclo di metilazione. Questo potrebbe essere il motivo per cui hai un'alta b12 e un'alta omocisteina. Normalmente l'omocisteina è alta quando la b12 è bassa e viceversa. Potresti fare un test genetico 23andme. O la versione di salute o antenata funzionerà bene. Scarica i tuoi dati genetici grezzi dal tuo profilo 23andme e caricali in un programma di metilazione dettagliato. Esistono diversi programmi di questo tipo. Selfhacked è una buona scelta. Mostra questi risultati a un medico con esperienza nel trattamento dei disturbi della metilazione. Molti disturbi della metilazione possono essere risolti con l'integrazione. 

 

Per quanto riguarda il protocollo di Turnbuckle:Per dirla semplicemente, il protocollo Turnbuckle prende il normale processo di controllo della qualità mitocondriale del nostro corpo e lo amplifica notevolmente. Il protocollo fa questo forzando i mitocondri a alternare stati di fissione e fusione. Normalmente nei nostri corpi i nostri mitocondri si alternano tra fissione e fusione in momenti diversi. Il protocollo di Turnbuckle impone un gran numero di mitocondri in fissione estrema e fusione estrema allo stesso tempo. Se hai mitocondri difettosi, prova il protocollo del tenditore, ma inizia con attenzione. Probabilmente ti sentirai molto stanco durante la fase di fissione del protocollo. Se ti senti stanco, questo è un segno che hai alcuni mitocondri difettosi. Puoi progredire attraverso più cicli del protocollo fino a quando non ti senti molto dalla parte della fissione. Quando ciò accade, saprai che la maggior parte dei tuoi mitocondri difettosi sono stati sostituiti con nuovi mitocondri. Spero che ti sentirai meglio a questo punto. Tuttavia, se hai altri problemi di salute che non vengono risolti, come l'ipotiroidismo o un difetto di metilazione, potresti continuare a sentire alcuni sintomi e nel tempo potresti sviluppare gradualmente mitocondri difettosi. Puoi sempre riprendere il protocollo mitocondri del tenditore per tutta la vita per eliminare i mitocondri difettosi. 

 

Hi, thank you very much for answering me!

 

So with regard to the Thyroid the first attempts were performed about 6 years ago despite the examinations (TSH, FT3, FT4 and antibodies were regular and in the range).

 

At the beginning I only took T3 then I took both T4 and T3 together but after months the symptoms didn't change ... practically I didn't improve.

 

The temperature in the morning has always been high and never low ... even during the day.

 

As a result we stopped this path with the doctor because he believed that my thyroid is healthy.

 

With regard to methylation it is very likely that there are one or more defects but I strongly feel that a lot starts from the mitochondria due to the benefits from the supplements I listed to you ... (NEVER AVUTI PRIMA) because they are involved in the mitochondria energy transport chain. ..I'm really sure of this because after 20 years I'm seeing a little light at the end of the tunnel ... at least I know a part of the truth.

 

The B12 in all the forms (MetilB12, Hydroxy ...) has always caused me "blocks" crash "really heavy from the neurological point of view ... (symptoms autistic spectrum but I have never had a diagnosis of Autism).

 

The protocol is really interesting but I have a bit of fear sincerely ... and from what I understand it doesn't work by solving any problems in the respiratory chain.

 

Is it correct what I wrote? help me check which other substances stimulate the various complexes?

 

Ribose doesn't help much in my case but Piracetam is really phenomenal to create ATP ... another signal that shows my difficulty in producing ATP.

[longcity90]

How can I facilitate the conversion of pyruvate to acetyl coenzyme A?

[longcity90]

More than 600 views and no help :(

How can I intervene if there is a mutation / defect in the mitochondrial respiratory chain?

[dlewis1453]

I recommend you go to selfdecode.com and upload your raw genetic data to their analyzer. You can get your raw genetic data from the basic 23andme test. You can then schedule a virtual consultation with a specialist from the company Selfhacked. The founder of selfdecode and selfhacked has experience advising on methylation disorders.

[longcity90]

I recommend you go to selfdecode.com and upload your raw genetic data to their analyzer. You can get your raw genetic data from the basic 23andme test. You can then schedule a virtual consultation with a specialist from the company Selfhacked. The founder of selfdecode and selfhacked has experience advising on methylation disorders.

 

Thank you but the methylation occurs later the mitochondrial transport chain takes place earlier ... I would have a methylation staggered if any previous mutations are not corrected.

 

A metabolic and mitochondrial chain test would be more useful.

[dlewis1453]

 

Thank you but the methylation occurs later the mitochondrial transport chain takes place earlier ... I would have a methylation staggered if any previous mutations are not corrected.

 

A metabolic and mitochondrial chain test would be more useful.

 

 

Whether you have a genetic defect in methylation or a genetic defect earlier in the chain does not affect my earlier recommendation. It would still be a good idea for you to get a genetic test done. Once you have done the test, you can study the results in the selfdecode genetic analysis platform, and you can also obtain consulting from them if you wish. 

[rodentman]

 

 

energy "crashes", language compromised speech difficulties, sudden and inexplicable changes of personality / mood, every day is different and I accuse strong mental fogginess accompanied by large drops in physical energy, ability to work and logic compromises, loss of motivation, loss of empathy and emotions, edema and loss of muscle tone, reduced field of vision, increase in eye pressure. ... I lose the sense of reality and enter a psychotic state.

 

These do sound like Mitochondrial dysfunction, but it's hard to say for sure.

 

Are you stuck in bed 99% of the time?

 

Do your crashes happen for long periods of time? (ie days, weeks)

 

Have you ever tried a large dose of prednisone before?

 

Did you have any infections, serious illnesses when you were younger? (ie Lyme disease, Epstein Barr (mono))

 

Have you tested for any autoimmune diseases? 

[longcity90]

Whether you have a genetic defect in methylation or a genetic defect earlier in the chain does not affect my earlier recommendation. It would still be a good idea for you to get a genetic test done. Once you have done the test, you can study the results in the selfdecode genetic analysis platform, and you can also obtain consulting from them if you wish. 

 

Which company is willing to send the test to Italy? if I'm not mistaken 23AndMe had refused my request to send to Italy. It is probably not even possible for me to send it to the United States ... thanks, you are absolutely right ... unfortunately we spent a lot of money unnecessarily on visits and analyzes without having an answer ...

[longcity90]

These do sound like Mitochondrial dysfunction, but it's hard to say for sure.

 

Are you stuck in bed 99% of the time?

 

Do your crashes happen for long periods of time? (ie days, weeks)

 

Have you ever tried a large dose of prednisone before?

 

Did you have any infections, serious illnesses when you were younger? (ie Lyme disease, Epstein Barr (mono))

 

Have you tested for any autoimmune diseases? 

 

Thanks to Dr. Pierpaoli's Melatonin I can sleep about 6-8 hours otherwise the neurological symptoms always predominate and therefore I have great difficulties not only at night but also throughout the day.

 

My suspicion after practically a whole life of symptoms ... is to have "MELAS" because when I lose contact with reality (similar to a psychosis) it is actually a sort of "metabolic stroke" ... failing to create / getting ATP correctly inside my brain is slowing down (lack of ATP, oxygen, nutrients and who knows what else).

 

MELAS should be deficient in complexes one and four of the respiratory chain.

 

The crash is daily but everything that ATP creates helps my metabolic / cellular processes a lot.

 

I have never tried prednisone, I don't know what it is.

 

As for viruses ... I am not aware of them ... I have never done specific analyzes. As a child I had a lymph node under my arm.

 

Is there anything I can do about viruses? standard tests are all normal except B12 Alta together with folate ... practically they do not enter the cells.

 

Thyroid hormones are all regular so I think there is nothing autoimmune.

 

Thanks for your intervention!

[Turnbuckle]

 

 

My suspicion after practically a whole life of symptoms ... is to have "MELAS" because when I lose contact with reality (similar to a psychosis) it is actually a sort of "metabolic stroke" ... failing to create / getting ATP correctly inside my brain is slowing down (lack of ATP, oxygen, nutrients and who knows what else).

 

 

 

 

 

 

The disease progression of MELAS suggests that all mitochondrial DNA cannot have been bad initially (heteroplasmy), thus the defective mtDNA must be avoiding quality control somehow, or else are just functional enough to avoid it, and thus slowly become predominant. As there is no present treatment and the disease is fatal, there would be nothing lost if you tried the mito protocol. Though I would be very careful taking nicotinamide + ribose initially, as I expect the impact would be very powerful if you actually have this disease.  If you can't get the ingredients, just start with N+R, or just nicotinamide if you can't get ribose. Start with a low dose. For biogenesis, you could try PQQ alone if you can't get the other ingredients.

 

Diagnosis and management of mitochondrial disease

[longcity90]

La progressione della malattia di MELAS suggerisce che tutto il DNA mitocondriale inizialmente non può essere stato cattivo (eteroplasmia), quindi il mtDNA difettoso deve evitare il controllo di qualità in qualche modo, oppure è abbastanza funzionale da evitarlo, e quindi lentamente diventare predominante. Poiché non esiste un trattamento attuale e la malattia è fatale, non si perderebbe nulla se si provasse il protocollo mito . Anche se inizialmente starei molto attento a prendere nicotinamide + ribosio, poiché mi aspetto che l'impatto sarebbe molto potente se in realtà hai questa malattia. Se non riesci a ottenere gli ingredienti, inizia con N + R o semplicemente nicotinamide se non riesci a ottenere il ribosio. Inizia con una dose bassa. Per la biogenesi, potresti provare il PQQ da solo se non riesci a ottenere gli altri ingredienti.

 

Diagnosi e gestione della malattia mitocondriale

 

So it can be said that so far I have been very lucky to stay alive ... I will do a cardiac ultrasound as soon as possible.

 

I've never been so sure in my life about all the symptoms ... I just have about 20 years of experience.

 

There are many "nuances" and interactions in mitochondrial pathologies so I can't be sure that the mutation of certain genes causes only "MELAS" but there will surely be other "dirty" genes that I can't access.

 

Here is a good site that explains every single mutation well:

 

https://neuromuscula....edu/index.html

 

About your protocol ... I have been following it for a few weeks (I'm reading the whole discussion) but unfortunately I have bad memories about ribose (taken alone 5gr it caused me severe hypoglycaemia) while niacinamide only 50mg definitely creates me some imbalance at the inside the methylation cycle ... in practice my already precarious situation worsens.

 

Probably B3 by increasing homocysteine ​​do I just need to balance with a methyl donor like Betaine or TMG?

 

Initially B3 (nicotinic acid) worked very well (probably it helped complex 1 NAD / NADH) but over time my body got used to it and it didn't help anymore ... or something ran out in the respiratory chain / methylation.

 

PQQ I don't feel anything (20mg) but that doesn't mean it's not working.

 

Now I only take Ubiquinol 50-100mg, PQQ 10-20mg and I will probably insert PIracetam for stroke-like episodes.

 

Thanks for coming ... it made me very happy. I hope to get out of this hell but apparently the cures are not there. My body and organs are suffering too much every day ...

[Turnbuckle]

 

 niacinamide only 50mg definitely creates me some imbalance at the inside the methylation cycle ... in practice my already precarious situation worsens.

 

 

 

Insofar as nicotinamide raises NAD+ enough to increase fission, you would indeed feel worse. But that is the only way to get rid of defective mitochondria -- assuming you do have a mito disease*. Using PQQ in isolation isn't going to help unless you reduce your mitochondrial mass first.

 

When you have high levels of defective mtDNA, fixing it can take a while. At 100% defective, it can't be fixed. At 90% defective and with 10% eliminated in a first cycle, you will be down to 88.9% dysfunctional mtDNA once you've topped off your mitochondrial mass (as biogenesis will copy everything, not just good mitochondria). It takes a lot of cycles when you are really bad off, but eventually it begins to move faster. For example, once you get down to 20% defective mtDNA and you get rid of 10% and rebuild the mass, then you are down to 11%. And the next cycle you are down to 1%. If you start off with 10% defective mtDNA, then you eliminate them all in one cycle.

 

*Alternatively, you might have a lysosomal disease that prevents mitophagy.

[dlewis1453]

Which company is willing to send the test to Italy? if I'm not mistaken 23AndMe had refused my request to send to Italy. It is probably not even possible for me to send it to the United States ... thanks, you are absolutely right ... unfortunately we spent a lot of money unnecessarily on visits and analyzes without having an answer ...

 

23andme does ship to Italy. See link below. Perhaps earlier they did not, but now they definitely do ship to Italy. 

 

https://eu.customerc...do-you-ship-to-

 

 

 

23andme includes your raw genetic data in all of its versions, which means you only need to buy the cheapest version to get your raw genetic data. The cheapest version is here: 

 

https://www.23andme....p=true&pdp=true

 

 

 

Here is how to access your raw genetic data from 23andme:

 

https://customercare...aw-Genetic-Data

 

 

Here is "SelfDecode" the genome analysis program that you use to analyze your raw genetic data:

 

https://selfdecode.com/

 

 

 

Here is "SelfHacked" the sister company to SelfDecode that offers consultations to help you analyze your genetic data:

 

https://content.selfdecode.com/

[longcity90]

Insofar as nicotinamide raises NAD+ enough to increase fission, you would indeed feel worse. But that is the only way to get rid of defective mitochondria -- assuming you do have a mito disease*. Using PQQ in isolation isn't going to help unless you reduce your mitochondrial mass first.

 

When you have high levels of defective mtDNA, fixing it can take a while. At 100% defective, it can't be fixed. At 90% defective and with 10% eliminated in a first cycle, you will be down to 88.9% dysfunctional mtDNA once you've topped off your mitochondrial mass (as biogenesis will copy everything, not just good mitochondria). It takes a lot of cycles when you are really bad off, but eventually it begins to move faster. For example, once you get down to 20% defective mtDNA and you get rid of 10% and rebuild the mass, then you are down to 11%. And the next cycle you are down to 1%. If you start off with 10% defective mtDNA, then you eliminate them all in one cycle.

 

*Alternatively, you might have a lysosomal disease that prevents mitophagy.

 

I'm not sure I fully understood your comment ... let's go in order:

 

Do you claim that the "negative" effect of Niacinamide is still positive and I must insist on having fission? can I increase the dosage gradually? 2gr definitely lower my adrenaline almost on the ground ... just a guess.

 

As regards PQQ, therefore, it must be used on the days of the Merger

 

MtDNA do you refer to that of the mother? so if it were 100% defective even your protocol would not be useful ... I repeat the symptoms I noticed them around 10 years old but my father reported episodes to me even when I was younger.

 

These continuous small metabolic strokes are the unmistakable sign ...

 

even in 2016 I think there was a short moment (about 10 days) in which I believe that my body was not creating the final ATP but I decoupled and that's it so I only used oxygen ... is it correct? (I believe oxidative phosphorylation was inhibited) I remember that I arrived around 4-5% of body fat ... I tried to lower the fats and keep the carbohydrates high ... unfortunately the neurological dysfunctions had not been resolved ...

 

The same effects were found with low-dose T3 + T4 thyroid replacement (thyroid is closely related to biogenesis if I remember correctly, you could consider it as an addition to your protocol).

[longcity90]

23andme spedisce in Italia. Vedi link sotto. Forse prima non l'hanno fatto, ma ora spediscono sicuramente in Italia. 

 

https://eu.customerc...do-you-ship-to-

 

 

 

23andme include i tuoi dati genetici grezzi in tutte le sue versioni, il che significa che devi solo acquistare la versione più economica per ottenere i tuoi dati genetici grezzi. La versione più economica è qui: 

 

https://www.23andme....p=true&pdp=true

 

 

 

Ecco come accedere ai tuoi dati genetici grezzi da 23andme:

 

https://customercare...aw-Genetic-Data

 

 

Ecco "SelfDecode" il programma di analisi del genoma che usi per analizzare i tuoi dati genetici grezzi:

 

https://selfdecode.com/

 

 

 

Ecco "SelfHacked", la consociata di SelfDecode, che offre consulenze per aiutarti ad analizzare i tuoi dati genetici:

 

https://content.selfdecode.com/

 

 

Great thank you very much! it will be an upcoming purchase even though I have seen attractive offers from DANTE Labs.

 

Do you know him ?

 

[Turnbuckle]

 

I'm not sure I fully understood your comment ... let's go in order:

 

Do you claim that the "negative" effect of Niacinamide is still positive and I must insist on having fission? YES

 

can I increase the dosage gradually? YES. Be careful and move up from 50 mg as you can tolerate it. 

 

As regards PQQ, therefore, it must be used on the days of the Merger. I'd suggest you try 50 mg nicotinamide on day 1, then PQQ on day 2, then back to nicotinamide, then PQQ, etc. Nicotinamide and PQQ on alternating days, creeping up with niacinamide. Leave off everything else and see how it goes. I'd expect it to go slowly at first, but after a few cycles you may see an improvement if this is indeed your problem.

 

MtDNA do you refer to that of the mother? MtDNA stands for mitochondrial DNA. All your mitochondria are from your mother.

 

so if it were 100% defective even your protocol would not be useful ... Right. It is only possible to magnify what you have with supplements.

 

 

 

 

As for the other questions, I can't give you an answer.

Edited by Turnbuckle, 31 December 2019 - 05:20 PM.

[rodentman]

 

Thanks to Dr. Pierpaoli's Melatonin I can sleep about 6-8 hours otherwise the neurological symptoms always predominate and therefore I have great difficulties not only at night but also throughout the day.

 

My suspicion after practically a whole life of symptoms ... is to have "MELAS" because when I lose contact with reality (similar to a psychosis) it is actually a sort of "metabolic stroke" ... failing to create / getting ATP correctly inside my brain is slowing down (lack of ATP, oxygen, nutrients and who knows what else).

 

MELAS should be deficient in complexes one and four of the respiratory chain.

 

The crash is daily but everything that ATP creates helps my metabolic / cellular processes a lot.

 

I have never tried prednisone, I don't know what it is.

 

As for viruses ... I am not aware of them ... I have never done specific analyzes. As a child I had a lymph node under my arm.

 

Is there anything I can do about viruses? standard tests are all normal except B12 Alta together with folate ... practically they do not enter the cells.

 

Thyroid hormones are all regular so I think there is nothing autoimmune.

 

Thanks for your intervention!

 

 

As for having MELAS, that's quite serious, it's progressive, and usually fatal.  I hope you don't have that.  Do you have epilepsy, have you had episodes of paralysis?

 

As far as testing for viruses, you can find that information here: https://mecfsroadmap.altervista.org/ under '1ST ROUND: Tests for Viral Infections'

 

As far as autoimmune diseases, other than Hashimotos and Graves, most can have little to no effect on your thyroid levels.  Many of them will cause very serious neurological symptoms and horrible fatigue, brainfog.  This includes diseases like Lupus, multiple sclerosis, Crohn's, etc.

[longcity90]

I wanted to update a positive thing that happened to me today.

 

On another Forum dealing with CFS (Chronic Fatigue Syndrome) I found a very long discussion that deals with the deficiency of PDH (Pyruvate dehydrogenase as one of the possible causes of the disease).

 

However, I did not understand if it is considered a mitochondrial pathology as I BELIEVE that pyruvate dehydrogenase is NOT INSIDE the membrane in the mitochondria ...

 

If we wade the UMDF (Mitochondrial pathologies) site, Pyruvate dehydrogenase deficiency is among the diseases.

 

They suggest a Ketogenic diet but in my case it just makes me feel bad ...in the forum they also talked about DCA or something similar, a drug used in cancer.

 

It appears that the main cofactor of the functioning of its enzymes is B1 and alpha lipoic acid.

 

This morning I took B1 (300mg per capsule) at the pharmacy.

 

I immediately took a capsule and had amazing effects in terms of positivity in my symptoms ...

 

I am not yet clear what the correct dosages may be but this makes me think that in MY CASE pyruvate dehydrogenase may be the cause of everything as it does not trigger glycolysis and the functioning of the mitochondrial respiratory chain ...

 

What do you think ? is there anything else i can use for this deficiency? I took another 300mg for lunch and I'm definitely fine ...

 

Thank you

[longcity90]

Per quanto riguarda MELAS, è abbastanza serio, progressivo e di solito fatale. Spero che tu non l'abbia. Hai l'epilessia, hai avuto episodi di paralisi?

 

Per quanto riguarda i test per i virus, è possibile trovare tali informazioni qui:  https://mecfsroadmap.altervista.org/  in "1 ° ROUND: test per le infezioni virali"

 

Per quanto riguarda le malattie autoimmuni, oltre a Hashimotos e Graves, la maggior parte può avere poco o nessun effetto sui livelli della tiroide. Molti di loro causeranno sintomi neurologici molto gravi e orribile stanchezza, cervello. Ciò include malattie come il lupus, la sclerosi multipla, la malattia di Crohn, ecc.

 

Epilepsy and paralysis I would say no, I updated with a new comment below.

 

Let me know!

[rodentman]

 

I wanted to update a positive thing that happened to me today.

 

On another Forum dealing with CFS (Chronic Fatigue Syndrome) I found a very long discussion that deals with the deficiency of PDH (Pyruvate dehydrogenase as one of the possible causes of the disease).

 

However, I did not understand if it is considered a mitochondrial pathology as I BELIEVE that pyruvate dehydrogenase is NOT INSIDE the membrane in the mitochondria ...

 

If we wade the UMDF (Mitochondrial pathologies) site, Pyruvate dehydrogenase deficiency is among the diseases.

 

They suggest a Ketogenic diet but in my case it just makes me feel bad ...in the forum they also talked about DCA or something similar, a drug used in cancer.

 

It appears that the main cofactor of the functioning of its enzymes is B1 and alpha lipoic acid.

 

This morning I took B1 (300mg per capsule) at the pharmacy.

 

I immediately took a capsule and had amazing effects in terms of positivity in my symptoms ...

 

I am not yet clear what the correct dosages may be but this makes me think that in MY CASE pyruvate dehydrogenase may be the cause of everything as it does not trigger glycolysis and the functioning of the mitochondrial respiratory chain ...

 

What do you think ? is there anything else i can use for this deficiency? I took another 300mg for lunch and I'm definitely fine ...

 

Thank you

 

 

I think that's great that you are using the CFS/ME forum to help get ideas/treatment.  They offer a lot of info.

 

As far as pyruvate dehydrogenase deficiency, I don't know much about that.  But taking a quick glance, there is a genetic test for that, which might be a good place too start.

 

Keep trying the B1 if it helps, and keep us posted.

 

I do know about ketogenic diet for CFS, and there is a small percentage of people who have had improvements on it.

[longcity90]

I think that's great that you are using the CFS/ME forum to help get ideas/treatment.  They offer a lot of info.

 

As far as pyruvate dehydrogenase deficiency, I don't know much about that.  But taking a quick glance, there is a genetic test for that, which might be a good place too start.

 

Keep trying the B1 if it helps, and keep us posted.

 

I do know about ketogenic diet for CFS, and there is a small percentage of people who have had improvements on it.

 

Yes, I must admit that this and Phoenix are the two Forums of reference for me ...

 

As for the B1:

 

How could I manage the dosage and cyclization? If I'm not mistaken, the active life is 10-20 days ALSO for the water-soluble version Thiamine HCL so it remains in the system for a long time ... is it correct?

 

Also are there other vitamins / minerals essential for vitamin absorption? risk of running out of other vitamins / minerals? some suggest keeping magnesium high.

 

Today I immediately felt the difference in the morning after a couple of hours (I didn't take it deliberately to understand the reaction).

 

Now I have had lunch and I have taken the 300mg, plus B5 15-20mg to help Krebs cycle.

 

If I have this birth defect, do I think I can take B1 daily without worrying too much?

[pamojja]

Also are there other vitamins / minerals essential for vitamin absorption? risk of running out of other vitamins / minerals? some suggest keeping magnesium high.

 

Today I immediately felt the difference in the morning after a couple of hours (I didn't take it deliberately to understand the reaction).

 

Now I have had lunch and I have taken the 300mg, plus B5 15-20mg to help Krebs cycle.

 

If I have this birth defect, do I think I can take B1 daily without worrying too much?

 

Just in case you're not aware of, there is one member at phoenixrising.me who experienced severe phosphor deficiency symptoms from initially beneficial effects of vitamin B1, and corrected that with higher phosphor intake.

 

Personally have taken about 150 mg of thiamine, 120 mg of benfotiamine and 40 mg of sulbutiamine in average per day for the last 11 years, without higher phosphor needs. About 260 mg in total, in average. And already above 500 mg/d for the last 2 years, and therefore I guess need in co-factors could be highly individual and have to be constantly watched out for with any higher-dose supplementation.

 

In general it helps if taking any B-vitamin at high dose to balance it at least with a good B-vitamin complex. Along with the major minerals usually deficient.
 

[longcity90]

Just in case you're not aware of, there is one member at phoenixrising.me who experienced severe phosphor deficiency symptoms from initially beneficial effects of vitamin B1, and corrected that with higher phosphor intake.

 

Personally have taken about 150 mg of thiamine, 120 mg of benfotiamine and 40 mg of sulbutiamine in average per day for the last 11 years, without higher phosphor needs. About 260 mg in total, in average. And already above 500 mg/d for the last 2 years, and therefore I guess need in co-factors could be highly individual and have to be constantly watched out for with any higher-dose supplementation.

 

In general it helps if taking any B-vitamin at high dose to balance it at least with a good B-vitamin complex. Along with the major minerals usually deficient.
 

 

Can I ask you why you are taking B1? I have never tried fat soluble forms like Benfo and alli.

 

From what I have been able to read it seems that the B1 needs:

 

Calcium, cobalt, maganese and magnesium

 

As far as Sulbutiamine is concerned, I think it acted on a  dopamine level  me too much "mania" ... I don't think it is appropriate at the moment.

 

Certainly my system is "overmethylated" causing me a lot of mental disorders ...

 

Regarding phosphorus, thank you for telling me ... I consume a large amount of meat, eggs, dairy products ... I think I am above the gram per day.

 

I remember the past few months of having tried B2 with unpleasant side effects ... probably NOW adjusting B1 with a minimum of 600mg per day I could have positive results ... I just have to try.

 

Same thing for the B3, initially very well probably acting on NAD / NADH then my body stabilized and the effects went diminishing ... indeed ... I found the serotonin too high which is very unpleasant.

 

B5 Acting on pyruvate, however, gives me good sensations.

 

B6 Nothing in particular

 

B12 no form tolerated

 

Methylfolate causes me strange non-positive reactions ... I prefer folate from food.

 

I repeat ... it seems incredible but yesterday I really saw life as in almost 30 years I had never seen it.

 

To be honest I am afraid of the so-called "re-feeding" effects and of the reactions that every organ of my body can suffer from this "awakening".

 

Do you agree ?

Edited by longcity90, 03 January 2020 - 02:39 PM.

[pamojja]

Can I ask you why you are taking B1? I have never tried fat soluble forms like Benfo and alli.

 

I suffered a serious PAD from a 80% stenosis at my abdominal aorta (giving me a 60% walking-disabilty; in remission since 4-5 years). And in lack of any promissing but invasive options, I started Linus Pauling's recommendation, followed the principles of the then TrackYourPlaque. Part of Pauling's recommendations are 1 or 2 B-complex vitamin pills, and part of TYP was high-dose Niacin against high Lp(a), etc. (the new incarnation of TYP, https://innercircle.undoctored.com/ doesn't recommend niacin anymore). Or titrating doses for B2,B6, B9, B12, TMG and choline against homocysteine. Proved I needed quite high doses of those to get it under control (confounded by all methyl-draining from the niacin).

 

And additionally the recomendation to balance any high-dose B-vitamin with all the other Bs worked very well for me. But as always, we all have different bio-individuality, and react differently to different doses. Therefore always worthwhile to start and increase a new nutrient always very slowly and gradually, to mention any adverse-effects or developing inbalances early enough, still easier to correct.

 

In my case I don't 'feel' any of the B-vitamins at all. The initial niacin-flush from about 3 g/d of niacin is long gone. Only at one point I felt a intolerance by going above 300 mg/d of choline. However, since long that is gone again and now I'm at about 700 mg/d choline without any 'felt' effects. With B6 I found above 200 mg/d my dream-recall was finally consistently back.

 

Without feeling anything I do instead go by the direction my comprehensive lab-testing is tacking, to adjust doses. And of course remission in symptomss. In your case with so much sensitivity you do have to listen to your body instead. And also consider testing for the major minerals in blood.

 

In my case developed only one major inbalance: a very severe Mg-deficiency despite supplementing about 1.7 g/d of elemental oral magnesium. Which most likely originated from a much higher utilization through higher, but otherwise solely beneficial, vitamin D3. Only Mg-sulfate IVs helped to overcome that.

 

Therefore your fear of refeeding, only monitoring blood-levels and adjusting intakes accordingly can appease. For the most common deficient magnesium, a red blood cell or a whole blood test, since in serum it can't detect a deficiency in most cases. In my case I still showed borderline B12 deficient by a much more sensitive methylmalonic acid test, despite sky-high B12, B9 and B6 in plasma (all known to be unnaturally elevated in plasma with supplementing; while still possibly functionally deficient in all of them).

Edited by pamojja, 03 January 2020 - 03:17 PM.

[dlewis1453]

I suffered a serious PAD from a 80% stenosis at my abdominal aorta (giving me a 60% walking-disabilty; in remission since 4-5 years). And in lack of any promissing but invasive options, I started Linus Pauling's recommendation, followed the principles of the then TrackYourPlaque. 

 

 

Hi Pamojja, 

 

Not to derail this conversation, but could you elaborate a bit more on your experience with the Pauling protocol and the kinds of results you achieved for your atherosclerosis? 

 

Thanks! 

[pamojja]

Not much time now. Therefore the short link to the long story: https://www.longecit...nal-remissions/

[longcity90]

Third day of Thiamine HCL 600mg is going very well trying to balance all the other necessary nutrients.

[mitomutant]

Hi longcity90,

 

I do have a primary mitochondrial disease. Diagnosis took 2 years and you should follow that route now. Italy has a great social security system, but you need to find the right specialist. I am based in Spain, and I used a mix of private/public doctors to get a definite diagnosis. It requires a muscle biopsy, then a battery of tests to get a result. But please stop trying to figure this out for yourself.

 

Also, try to contact user "Asor" here in this forum. He is also affected my a mitochondrial disease and he is Italian. I am sure he will be able to give you good advice on where to go to get a diagnosis.

 

One thing that I can tell you for sure if that you do *not* have MELAS. The hallmark of this disease is a stroke-like episode, where you lose consciousness and end up in the hospital for a few days.

 

Take care,

Luis