What’s next?

[nerd]

What is Dr. Been and did you post on here the entire thing that you wrote to Dr. Been?

Thanks

About Dr. Mobeen

He kind of connects the different Ivermectin proponents in his interviews and conferences, including the FLCCC. That's why I wrote him this concerning their Fluvoxamin recommendation for long haulers.

 

[Martin aka paused||M.E.]

Hey Martin, it seems like everything that has helped you were drugs used by Goldstein. This is a graphic which shows how Goldstein did drug screening . Maybe you can find something else based on the drugs that have already helped you.

View attachment 43978

Thank you. Yes we are working with the exact same graphic

 

[frozenborderline]

Search forum for ceftriaxone and Rocephin for accounts. Complete remission of brain fog.

From wiki:
“Ceftriaxone seems to increase excitatory amino acid transporter-2 pump expression and activity in the central nervous system, so has a potential to reduce glutamatergic toxicity.[29][30]”


The 2 epilepsy drugs have helped others with brain fog.

Hmm

 

[andyguitar]

Yes we've been thinking about that but the problem is: how to get in/out of the chamber

If you have 2 helpers they can put you on a stretcher and carry you to the chamber. Then all you do is lay on it for the time you are in the chamber. You will need someone to stay there whilst you are inside.

 

[Martin aka paused||M.E.]

Amisulpride has a very similar effect to Abilify.

Several of us take it instead of Abilify, including I think @Hip who takes it to good effect. Maybe he can tell you more about it.

Wishing you hope and healing @Martin aka paused||M.E.

The difference hip told me is that he doesn't get an energy boost. So you feel that you have more energy / less PEM on Amisulpride?

 

[splusholia]

Have you tried thiamine? I take lipothiamine. Nimodipine also helps.

 

[Martin aka paused||M.E.]

Have you tried thiamine? I take lipothiamine. Nimodipine also helps.

Yes both don't help me unfortunately

 

[Jessie 107]

The difference hip told me is that he doesn't get an energy boost. So you feel that you have more energy / less PEM on Amisulpride?

Many Hip doesn't get a energy boost because he is mild/ moderate.
I am fortunate that Abilify is still working well after a year of taking it.
Good luck to you

 

[Martin aka paused||M.E.]

Many Hip doesn't get a energy boost because he is mild/ moderate.
I am fortunate that Abilify is still working well after a year of taking it.
Good luck to you

I don't know why it should only work for the severely affected.
That's all very frustrating atm.

 

[Learner1]

What do you mean?

I mean that drugs are:

• Typically very specific to some pathway on the body
• Many times not a part of the body to begin with - who has a topirimate or phenytoin deficiency?
• 75% of the time, damaging to mitochondria
• Likely to cause side effects on a delicate patient
• Can and do cause irreversible harm, even death, when taken as prescribed for the indications they were approved for

The drugs being suggested here are strong psychiatric drugs. Given what you've shared your main problems seem to relate to your immune system, both immunodeficiency and likely autoimmune, and infections. You've responded to things that help mitochondria. These problems tend to sap resources, depleting nutrients hormones, etc. I don't doubt dopamine may be depleted, but looking to provide more substrate to increase production without incurring the risks of some drug might be helpful.

I would try to increase the doses and test it for longer. I tried a lot of aminoacids though successfully for other issues, I could see positive results within a few days or a week so they act quite quickly, sometimes even within hours, so it is best to try low doses first.

Good suggestion.

I thought you were undergoing serial B-cell depletion with rituximab, and this had cured you.

I have multiple diagnoses and seem to have permanent damage from drugs taken as prescribed for my cancer, so I don't think I will ever be cured, but I have gained a lot of function with reduction in symptoms. And I took no psychiatric meds to help my immune system.

The Rituximab was prescribed by an ME/CFS specialist who felt that I fit into the subgroup of patients with immune problems who would be helped by it, and I did it, but only after getting a second opinion from an immunologist, and doing a lot of my own research, and talking to patients who'd been on it. He only gives it to patients who have been in IVIG for 12-18 months and then only after treating all their infections and after testing them for several other infections. It helped my autoimmune issues, and I no longer take drugs for most of them. However, it certainly didn't cure my immunodeficiency.

I continue on the IVIG as I am immunodeficient, as are a not insignificant subset of ME/CFS patients. And, I'm currently taking two antivirals for the reactivated virus that I am fighting,

Also, I still take several hormones, which I have tested deficient in, and a beta blocker, after every natural solution failed, and my BP was 170/100 unmedicated.

And I take Kuvan after finding I had high peroxynitrites, a gene that makes me poor at BH4 production and another one that makes me poor at BH for recycling - it was a cheap supplement until 2007 when Biomarin patented it and made it into an expensive drug.

Each of these has been prescribed by knowledgeable doctors and not random suggestions from the internet for psychiatric drugs that are not appropriate for immune dysfunction.

As for Goldstein, I find his suggestions out of date and not focused on many of the problems that recent research has shown ME/CFS patients to have.

Yes we've been thinking about that but the problem is: how to get in/out of the chamber

There are chambers that a bed can be wheeled into. Otherwise help is needed to get in and out, one or two people. It can be helpful particularly if one has hypoxia and/or infections, but is best used in concert with other treatment modalities.

 

[Martin aka paused||M.E.]

I mean that drugs are:

• Typically very specific to some pathway on the body
• Many times not a part of the body to begin with - who has a topirimate or phenytoin deficiency?
• 75% of the time, damaging to mitochondria
• Likely to cause side effects on a delicate patient
• Can and do cause irreversible harm, even death, when taken as prescribed for the indications they were approved for

The drugs being suggested here are strong psychiatric drugs. Given what you've shared your main problems seem to relate to your immune system, both immunodeficiency and likely autoimmune, and infections. You've responded to things that help mitochondria. These problems tend to sap resources, depleting nutrients hormones, etc. I don't doubt dopamine may be depleted, but looking to provide more substrate to increase production without incurring the risks of some drug might be helpful.
Good suggestion.
I have multiple diagnoses and seem to have permanent damage from drugs taken as prescribed for my cancer, so I don't think I will ever be cured, but I have gained a lot of function with reduction in symptoms. And I took no psychiatric meds to help my immune system.

The Rituximab was prescribed by an ME/CFS specialist who felt that I fit into the subgroup of patients with immune problems who would be helped by it, and I did it, but only after getting a second opinion from an immunologist, and doing a lot of my own research, and talking to patients who'd been on it. He only gives it to patients who have been in IVIG for 12-18 months and then only after treating all their infections and after testing them for several other infections. It helped my autoimmune issues, and I no longer take drugs for most of them. However, it certainly didn't cure my immunodeficiency.

I continue on the IVIG as I am immunodeficient, as are a not insignificant subset of ME/CFS patients. And, I'm currently taking two antivirals for the reactivated virus that I am fighting,

Also, I still take several hormones, which I have tested deficient in, and a beta blocker, after every natural solution failed, and my BP was 170/100 unmedicated.

And I take Kuvan after finding I had high peroxynitrites, a gene that makes me poor at BH4 production and another one that makes me poor at BH for recycling - it was a cheap supplement until 2007 when Biomarin patented it and made it into an expensive drug.

Each of these has been prescribed by knowledgeable doctors and not random suggestions from the internet for psychiatric drugs that are not appropriate for immune dysfunction.

As for Goldstein, I find his suggestions out of date and not focused on many of the problems that recent research has shown ME/CFS patients to have.
There are chambers that a bed can be wheeled into. Otherwise help is needed to get in and out, one or two people. It can be helpful particularly if one has hypoxia and/or infections, but is best used in concert with other treatment modalities.

Thank you for your detailed response. I appreciate that very much!

You're absolutely right about the side effects. I experienced a trip to hell after taking ciprofloxacin for only eight days. It was a six-month-long nightmare. Then I became moderate.

Here are a few problems:

- There are no infections I'm 100% certain of and antivirals are also damaging to mitochondria (especially when given as long term treatments) I only have anti-bodies as a proof, so it would be a shot in the dark. The biggest problem with AB-tests I think of here is cross-reactions with other pathogens so I wouldn't know for sure which antiviral was the right one. Additionally I had to pay for those drugs by myself and as I'm very poor I have to be sure to target the right pathogen so I don't waste thousands of Euros. The tests are expensive themselves (especially the PCR). And honestly, idk why the possible side effects of anti virals would be better than those of other drugs, especially when it comes to antiretroviral therapies (as I have high titers of CoxB4).

- I don't have access to these trained doctors. First there are no real specialists for ME/CFS available where I live (but many quackeries) and second if you are you are very severe and bedridden its more difficult than one might think: the immunologists for example didn't accept me bc I can't go to their practices. It's like a bad joke. Most docs didn't, including for example Chia (I couldn't afford him anyway). So atm despite all efforts we have done I'm left with my GP and an ME doc who is strictly contra antivirals in my case.

- I can't afford most treatments like IVIG. That's a big problem and I have had multiple fights with my insurance for 20g/month for seven months. In the end I had to sell my car and it did not change anything...

- I'm on whey since two months, experimented with different amounts of it... Changed brands, tried collagen, added extra BCAA...I don't improve, at least not noticably

- Vitamins and minerals: I experiment with those for years and everytime I tested those (doesn't matter which) the test results were sky-high. I take Life Extension Mix as a basis supplement to ensure that I don't miss anything plus I have nutrients in my tube feeding and then add and experiment with different things looking at certain pathways and testing if their is a “trap”. Could write a book. But I never had success with any supplement. Unfortunately.

- autoimmunity is a broad spectrum... We possibly all have AAB... But that's a field I can't explore without science (where to look at?) and money... The only thing that I think I could add and might be beneficial is Baicalein based on my cytokines and MCP-1. I've already ordered that.

- I'm on day two of Wellbutrin and now I can be sure: it helps. It's not a miracle like Abilify but dopamine seems to be an issue. Based on @ljimbo423 recommendation I've ordered n acetyl l tyrosine. In combination with this reuptake inhibitor, I should notice very soon if it helps

And many more issues. So just as you, I sometimes have to take drugs instead of supplements though I'm not a fan of it. But my health condition is unacceptable and really unbearable. So I have to weigh up the possible benefits vs possible side effects.

mHBOT is hard to realize. I would need a new bed and invest the money I don't have to hire a specific device. But it's on our list.

I know, I only complain here. But these are the problems I have to face day in day out. If I had more money, it might be different.

Thanks a lot,
Martin

 

[Viala]

I'm on day two of Wellbutrin and now I can be sure: it helps. It's not a miracle like Abilify but dopamine seems to be an issue. Based on @ljimbo423 recommendation I've ordered n acetyl l tyrosine. In combination with this reuptake inhibitor, I should notice very soon if it helps

I am glad to hear you feel better. I would make sure with a doctor if it is ok to take supplemental tyrosine together with wellbutrin if this is what you intend to do, I've never heard about this combo but I am curious now. Also what I noticed with aminoacids is that there may be different reaction to similar but not identical aminos, so you may react differently to n acetyl l tyrosine than to tyrosine, same goes to different brands. Well known brands are good.

 

[Martin aka paused||M.E.]

I am glad to hear you feel better. I would make sure with a doctor if it is ok to take supplemental tyrosine together with wellbutrin if this is what you intend to do, I've never heard about this combo but I am curious now. Also what I noticed with aminoacids is that there may be different reaction to similar but not identical aminos, so you may react differently to n acetyl l tyrosine than to tyrosine, same goes to different brands. Well known brands are good.

If I ask MY docs they would have no idea
But as always I start low and go slow

 

[Viala]

If I ask MY docs they would have no idea

Yep, I know what you mean. I remember look on a face of a pharmacist when I asked about one amino, she gave me a quote from a commercial, not even close to how this amino works. It still amazes me how it is possible that they don't know.

 

[crypt0cu1t]

20g/month for seven months. In the end I had to sell my car and it did not change anything...

I'm not trying to be rude, but if autoimmunity is an issue, 20g per month likely won't even touch it. It took 120g and a few rounds of Plasmapheresis to get me back.

 

[Martin aka paused||M.E.]

I'm not trying to be rude, but if autoimmunity is an issue, 20g per month likely won't even touch it. It took 120g and a few rounds of Plasmapheresis to get me back.

Yep. That would cost me 86000 € only for IVIG for a course of 6 months and my insurance declined to cover it. The 20g was a prescription by KDM I also had to pay on my own.

 

[crypt0cu1t]

Yep. That would cost me 86000 € only for IVIG for a course of 6 months and my insurance declined to cover it. The 20g was a prescription by KDM I also had to pay on my own.

Jesus. I'm so sorry you have trouble getting it. I wish it were easier..

 

[Martin aka paused||M.E.]

Jesus. I'm so sorry you have trouble getting it. I wish it were easier..

Thank you!!!

 

[Marylib]

Phenytoin is on my Todo list as well, besides donepezil, both are sigma-1 agonists/modulators and have different additional mechanisms that might be helpful with the ME pathophysiology.

This is an excerpt of what I wrote Dr. Been.

@nerd I'm not sure what a spoiler is in this context, but do you get responses from Dr.Been?

 

[Marylib]

T
I know, I only complain here. But these are the problems I have to face day in day out. If I had more money, it might be different.

Thanks a lot,
Martin

You're not complaining @Martin aka paused||M.E. - you're trying to feel better and asking for help. Glad the Wellbutrin is helping at the moment. Many of us don't have resources to pursue things and we only try what we can pay for at any given time, so you are certainly not alone.