What are the commonly available immune modulators?

[alex3619]

But finding the right treatment for a patient is almost a random process of going through the dozens of established treatment options available (as well as any of your own devising). You have to keep going, until you find the treatments that work for you.

In a sense doctors do this all the time. Most treatments are not guaranteed in medicine. Doctors have to make a best choice from a limited range of options. This typically involves experimenting on the patient. If the patient does not respond as expected then they may choose another option, and so on down their list. They are trained to do this, though the methods used vary hugely doctor by doctor.

Most of us do not have very experienced ME doctors. Our doctors have very limited knowledge on ME. So its completely understandable that we have to make choices ourselves, though it would probably be better in most cases if patients and doctors could collaborate. However many doctors use an authoritative model, so its difficult for patients to be really engaged in decision making.

I have a new GP. She has already made one bad bungle in decision making, on our first appointment, but don't ask me for names. I am not interested in blaming doctors, but in finding out ways to improve decision making. I will take this particular issue up with her again after I have done a little research.

Doctors have to make decisions on limited and often fallible information. That is the game. Its good to make these whenever possible on sound research and reasoning, but in practice this is problematic. I am finding that even EBM "evidence" based claims are often flawed.

Medicine will advance by sound science, but this takes time, effort, support and funding. It does not just magically happen. In the meantime we, as patients, still have to deal with issues on a day to day basis, whether there is sound science available to help us or not.

 

[Gingergrrl]

I have a lot more questions about immune modulators especially from the lists posted by Hip and Ema but now not sure if this is the right thread for it?

@Sushi do you think I should try to get this thread back to the immune mod topic or keep it for debating the scientific process (which I also think is important) but I have less to contribute as a non scientist!

I could also start a new post re: immune mods as another option.

I don't want any moderators to have to split the thread as I know it is very labor intensive. Let me know what you think?!

 

[Valentijn]

I was told that I was being asked to get involved because there was a feeling that PR should try to move on to new things. Maybe setting the scientific agenda.

The science is definitely welcome - you contribute a great deal in that regard. But the constant rebukes when we share our personal experiences are not productive, especially since no one has been misrepresenting their personal experiences as established science.

On the rare occasions when someone does overstate their claims, the community has been quite good at pointing that out.

Also please keep in mind that most of us have been in abusive relationships with various "authorities" in our lives as ME patients: doctors, therapists, benefits systems, family members, as well as the abuse we get as a group from researchers and the media. We have faced years or decades of criticism, had our experience of our symptoms undermined, been demonized as violent radical psych-haters, and been denied even basic medical care.

We need to be able to discuss our personal experiences regarding symptoms and treatments in a safe atmosphere. And when anytime a person describes what they're trying, with or without a doctor being involved, it feels like an attack when someone else immediately responds with "that's not a proven treatment".

I believe the general saying is that "absence of evidence is not evidence of absence". Yes, there's never any rigorous scientific proof regarding anything we're trying. Neither for or against the treatment. Hence our anecdotal accounts are of great interest to each other, in the lack of anything better.

It is essential that we be able to share that anecdotal evidence with each other, and criticizing that evidence solely for not being of better quality is discouraging people from sharing their experiences or asking for other people's experiences. It is upsetting people - we are not all thick-skinned academics who are able to argue about everything without taking it personally. Which is why it's very helpful to take into account the expectations of the original poster and the general expectations in specific subforums.

Anecdotal evidence from Phoenix Rising resulted in me trying magnesium. I stopped having constant muscle twitches and cramps, and it resolved my chronic constipation. I was able to sleep without being awoken by leg cramps and was in significantly less pain on a daily basis. Fish oil stopped the nasty headache which was present all day, every day. NAC stops my brain from buzzing all day and night, and lets me get a good night's sleep. Strattera made the difference between being unable to sit up for more than a few minutes at a time, and being able to easily sit up all day. These aren't the answers for everyone, or even for most of us, but they were safe things I was able to read about and try for myself because other people shared their anecdotal experiences which weren't supported by scientific research.

Without anecdotal evidence, most of us would be more disabled and/or experiencing a lot more misery on a daily basis. We are not going to stop sharing those unsupported experiences until we are all getting intelligent and appropriate medical care - something which is very unlikely to happen any time soon.

 

[SOC]

It is upsetting people - we are not all thick-skinned academics who are able to argue about everything without taking it personally.

This is a valuable point that I think bears some expanding...

I am something of thick-skinned academic. I can have a tough academic discussion with the best of them. I do so in the appropriate environment. PR is not a university research lab, nor is it an academic publication. It is a place for patients to share their experiences in a safe environment. ME is not academic to us. It is not some theoretical, what-is-the-next-research-step situation. It is very, very personal. We are living with the misery of this illness every minute of every day. We are fighting to get every tiny bit of improved function we can because without it we have very little life. Treating our experience as a mere academic exercise is not only inappropriate, but insensitive and unkind.

Threads (like this one) where people are talking about their treatments, or asking for help with the little (and not so little) things that make our lives easier is not the place for a cold academic claim that only testing and treatments backed up by double-blinded placebo-controlled studies are acceptable. We don't have those studies yet. We know that all too well. We are begging for them. We're not stupid. We want the best information possible. Right now, the best available is not what is ideal in an academic research environment. It's experimental tests and the extensive clinical experience and wisdom of our ME/CFS specialists. That's the best we have right now. That is what we are going to work with. That is what good medicine uses -- not only the pristine research, but the best currently available data.

Case in point -- are doctors refusing to use Ebola treatments not backed up by double-blinded placebo-controlled studies? Is the use of experimental drugs for Ebola in clinical practice irresponsible? Is the use of the plasma of Ebola survivors in treating Ebola patients unjustified, or quackery because it's not been through the most rigorous research testing? Why is it done? Because it is based on the best currently available knowledge. We don't tell Ebola patients to go untreated because we don't have established, rigorously tested research on all available treatments. Why should we suggest ME patients forgo the best available testing and treatment because we don't yet have the perfect research data we all devoutly wish we did?

 

[Jonathan Edwards]

I think there are two quite separate issues here. Valentijn refers to 'constant rebukes when we share our experiences'. I have written over 900 posts. I would be interested to know if anyone can find a single post in which I have rebuked, criticised or discouraged 'sharing of experiences'. This is quite a serious charge and I would want to put it right if indeed I was doing this. As far as I know I have not interfered in any way with people recounting their experiences with drugs or tests. I have cautioned people about giving others a false impression of the reliability of information, which is the second issue - as follows.

The only comment I know that I have made recently about quackery is this:

'I think you are probably right that most people suggesting tests have no financial interest but we do know of one or two who have posted recently. I think the main issue is that patients are simply not aware that these tests cannot justifiably be used 'as clues' to help treatment. Given how little we understand about their significance this would be quackery and I think people need to be fully aware of that.'

I stand by that statement. I am not accusing anybody specific of quackery but if doctors are recommending treatments to individuals based on tests whose significance is not established I think that is hard to justify except under very special circumstance like Ebola where there is no second chance and where all the relevant findings will be written up in a publicly available research report. As Alex says, doctors experiment all the time, but they experiment within a range of options for which there is reliable evidence. A looser suck-it-and-see approach was common when I was a registrar in the 1970s but not now. SOC says 'We want the best information possible.' Precisely; we want to make sure information is solid. And we are constantly seeing examples of studies that are not well enough designed to give that. The lack of better information is often due to weak study design and data collection. If this is not pointed out to the researchers nothing will change.

I am not aware that I have criticised anybody's 'top ME doctor'. I have challenged the science and evidence. I have no information on how individual doctors practice and I am sure many of them are dedicated and provide an excellent care service.

I think it would be fair to Gingergrrl to put this to bed. I will not post agin on this discussion. But for the benefit of the 'silent majority' who indicate they approve I will continue to contribute critical thoughts about science and evidence.

 

[Valentijn]

I have cautioned people about giving others a false impression of the reliability of information, which is the second issue - as follows.

Yes ... those repeated "cautions" are unwarranted, upsetting, and interrupting reasonable discussions. No one was over-stating claims, and those "cautions" are making them feel like they've done something wrong by sharing what is very clearly their personal experience.

 

[daisybell]

PR has been a godsend for me, in terms of reading what has helped others, and deciding what I wanted to try. However, I do appreciate the points @Jonathan Edwards is making about the science and evidence. IMO, I feel it is okay for me to write what I try and what has been helpful, but perhaps I should not recommend a path or treatment for someone else? That is hard I think, especially if/when something seems to work really well. However, just because I'm good on a particular treatment doesn't at this point mean it won't harm someone else.... And that would be awful.
Sorry @Gingergrrl for being off-topic!

 

[lansbergen]

Yes ... those repeated "cautions" are unwarranted, upsetting, and interrupting reasonable discussions.

How many lectures do you think I got when I said I wanted to try it on myself? These medical trained people were very concerned it would kill me,

 

[Undisclosed]

There is no 'quiet hidden agenda'.

To squash a rumour here, Jonathan Edwards was NOT brought on board to change Phoenix Rising. Perhaps what he wrote wasn't clear but his words are being twisted out of all proportion now. He joined in July of 2013 on his own volition. He was invited to join the board six months after he joined. We have asked and asked and asked and asked and asked for patients to become involved in the board and running of Phoenix Rising and the only ones who have agreed recently have been butydoc and Jonathan Edwards. If you look at any health related non-profit organization, you will see it's made of many people with many different backgrounds -- patients and non-patients alike.

There is no rule or policy that suggests this is a forum for patients only. The only people that are not welcome here are spammers/advertisers and trolls. Carers, interested parties, advocates etc are all welcome.

As far as a thread hi-jacking goes. The thread was not hi-jacked by Jonathan Edwards. On page one, gingergrrl asked about immune modulators. J. Edwards offered his opinion as did other members. The hi-jack occurred by another member's comment which resulted in the thread going off-topic.

Perhaps there is a bit of "well a non-patient can't possibly understand what patients are going through". That is not a reason to exclude them. If anything a non-patient can learn from our experiences.

To be frank, while I was reading this thread, I could only think of a few words -- 'myside bias'.

Myside bias is the tendency to interpret or prioritize information that confirms ones own beliefs. I think we all suffer from this (human nature) because we take a stand and have our own opinions about things. At the same time, to get along, we need to tolerate the opinions of others as well. We are a forum made up of very diverse people who have different backgrounds and experiences so of course there are going to be disagreements.

If you can't tolerate the views of others -- stop personally attacking them and put them on 'Ignore'. If you think they have breached the rules, there is something called the 'Report' button, use it.

So what do we want? -- a forum where only certain opinions are allowed and if you dare cross the line, then it's a pile on. Shall we become an echo chamber of intolerance where only certain kinds of people are allowed and only certain opinions are tolerated? Shall we have a rule that says, you may not say something more than once? Shall we have a rule where skeptical comments are not allowed?

There are some who don't mind trying everything suggested based on anecdote. There are some who just want some kind of scientific basis for their choices. Some go on both. Who is wrong here? How many arguments are we going to have about this. Embrace the information you want and leave the rest.

Does Jonathan Edwards have to agree with everything on this forum. If the answer is 'yes', then I guess to be fair then so do all of you. We don't have rules for individual members.

There is merit to discussing both sides of things. Members can do whatever they want in terms of their own health. At the same time we also need to question the research that is out there and what doctors are offering. Why not? treatment is expensive -- the best decisions come from getting a balanced view. There are many many treatments offered by doctors -- shall we just blindly accept these treatments because a doctor who is specializing in ME/CFS is offering them. We all struggle to find treatment and there are quite a few diverse treatments being offered, there should be room to ask questions, post what you think about them. It might get us to a better place. Personally attacking each other only serves to divide us further.

This thread is not going to be split because that would be just allowing multiple rule breaches on the new thread and a discussion of immune modulators on this one. Any off-topic comments will be removed and then members can go back to discussing immune modulators.

We are all different and these differences should be embraced. Every member, whether patient or not, deserves to be treated with respect. This is not meant to be an exclusive forum tied to just certain opinions. All voices should be equal and if you don't agree with them, don't make it personal.

How about anybody who has any questions for the board or their agenda, join the board in a face-to-face video chat and tell them exactly what you think and discuss all of this rather than jumping to conclusions and posting what is actually not even close to reality. This is a serious invitation.

I have asked some questions here that are merely rhetorical. Please do not respond to this post here. If you want to discuss, you can send me a PM. This thread will stay closed until all the off-topic posts are removed.

Thank you.

 

[Undisclosed]

This hread is now open for discussion of Immune Modulators.

Some of the off-topic comments have been left as is because it was part of an important discussion. The posts that were veiled or not so veiled personal attacks of an inflammatory or provocative nature have been removed as per our rules.

Please stick to discussing immune modulators. If you wish to have a general discussion about our rules then the place to do that would be the 'Moderation' forum.

Any further off-topic personal attacks of an inflammatory and provocative nature will be immediately removed.

Thank you.

 

[AndyPandy]

Thank you @Jonathan Edwards. I didn't realise that minocycline was an immune modulator.

I have been prescribed minocycline for chlamydia pneumonia (haven't started it yet) but will ask for another treatment as I have now discovered that it can induce lupus. I already have some lupus like symptoms, positive ANA 1:640 speckled pattern and genetic potential for lupus.

Best wishes Andy

 

[Gingergrrl]

@Kina thank you for re-opening this thread.

I wanted to ask @Butydoc, did you take doxycycline to treat a known bacterial infection or as an immune modulator in the hopes of lowering inflammation?

I asked my doctor about Famvir and he said that as of current research, there is no known anti inflammatory or microglial affects of Famvir like there is with Valcyte. I am going to finish out my six month trial of Famvir as I feel there is nothing to lose in doing this and suspect it is very unlikely that my body would tolerate Valcyte.

Once I read through the list of immune mods posted by Hip and Ema, I am going to ask more questions. Thanks again to everyone.

 

[Butydoc]

@Kina thank you for re-opening this thread.

I wanted to ask @Butydoc, did you take doxycycline to treat a known bacterial infection or as an immune modulator in the hopes of lowering inflammation?

I asked my doctor about Famvir and he said that as of current research, there is no known anti inflammatory or microglial affects of Famvir like there is with Valcyte. I am going to finish out my six month trial of Famvir as I feel there is nothing to lose in doing this and suspect it is very unlikely that my body would tolerate Valcyte.

Once I read through the list of immune mods posted by Hip and Ema, I am going to ask more questions. Thanks again to everyone.

Hi Gingergrrl,

I started doxycycline because I stopped making progress on Valcyte and my titer to M.pneumonia was 1:512. I felt that there was little to loose to try doxycycline since this was a fairly benign drug with little side effects. I now believe that my positive experience to this drug was probably secondary to its immunomodulator properties. One of my brothers has CFS/ME, the other died from MS, and my mother died from Takayasu arteritis. All these disease appear to be immunologically generated diseases. It is hard for me to believe that this genetic connection is related to an infectious agent. Maybe an environmental exposure is responsible for this family relationship with these disease, although I doubt it since we all came down with our diseases decades apart. I tend to believe that my disease was caused by a trigger in a genetically vulnerable individual. Nothing to prove my hypothesis, just a educated guess.

Best,
Gary

p.s. I assumed that doxycycline and minocycline, both similar to tetracycline, may possess similar effects on microglial cells.

 

[SOC]

I tend to believe that my disease was caused by a trigger in a genetically vulnerable individual. Nothing to prove my hypothesis, just a educated guess.

My family history suggests a similar hypothesis. We have ME/CFS in 3 generations, Hodgkin's Lymphoma in at least three generations, and a least one other case of what looks like ME or MS. Add to that a case of severe paralysis from polio, which is asymptomatic in 90-95% of cases, and only paralyzes (at all) 0.5% of cases. It certainly makes one wonder about a genetic vulnerability in the immune system. We don't seem to deal with viruses as well as the average person. Maybe someday we'll have the research to know for sure.

 

[Sushi]

As it turns out, minocycline is also an inhibitor of microglial cells.

This is interesting to me as, I am on one med that is supposed to be in inhibitor of microglial cells now and I'll probably be on minocycline next. I it does seem that some of the improvements we see from different protocols are from effects that may not be generally recognized.

Sushi

 

[Gingergrrl]

@Butydoc

I started doxycycline because I stopped making progress on Valcyte and my titer to M.pneumonia was 1:512. I felt that there was little to loose to try doxycycline since this was a fairly benign drug with little side effects. I now believe that my positive experience to this drug was probably secondary to its immunomodulator properties.

Thank you and I was curious what led you to starting an antibiotic. I am negative on M. pneumonia tests and initially got an unclear reading on a C. pneumonia test but then negative on two follow-up tests. And I have been negative on all other bacterial tests thus far and only solid positives are EBV and VZV. I have had such horrific experiences with antibiotics that I can't imagine a scenario where I would take one without proof of a bacterial infection. But I am hoping to find other things with anti-inflammatory and immune modulator properties that I can take.

One of my brothers has CFS/ME, the other died from MS, and my mother died from Takayasu arteritis.

I am so sorry for your losses and did not know that. Has your brother tried similar treatments for his CFS/ME to what you have tried and also found them to be effective? If so, would this be more proof of genetic predisposition?

All these disease appear to be immunologically generated diseases. It is hard for me to believe that this genetic connection is related to an infectious agent. Maybe an environmental exposure is responsible for this family relationship with these disease, although I doubt it since we all came down with our diseases decades apart. I tend to believe that my disease was caused by a trigger in a genetically vulnerable individual. Nothing to prove my hypothesis, just a educated guess.

I tend to agree with you although in my case, no one else in my family has ever had ME/CFS or anything like it. My maternal grandparents and two uncles had multiple serious health problems but nothing similar to mine.

 

[Gingergrrl]

@Hip

Perhaps the immunomodulators that you hear about the most, and the ones which are regularly used by ME/CFS specialists, are: oxymatrine, Nexavir, Imunovir, low-dose naltrexone and Valcyte.

Prior to this thread, I had only thought that Valcyte was an anti-viral and have learned a lot here.

In the responders, Chia also found a reduction in the amount of enteroviral VP1 protein in the stomach biopsy tissues after oxymatrine treatment, indicating that oxymatrine reduces viral loads. The image below shows the enteroviral VP1 protein (the brown stain) before and after oxymatrine (Equilibrant brand) treatment.

So, is Oxymatrine & Equilibriant pretty much only for known enteroviral infections vs. something like EBV or herpes family viruses?

Note that Chia has advised against the used of oxymatrine in patients with autoimmune tendencies

That's what I keep reading which rules it out for me with Hashimoto's. I was curious if anyone reading this thread who has Hashimoto's has ever tried oxymatrine or Equilibriant?

I myself took a 4 month course of Nexavir (the 4ME version). I found I made significant improvements in my ME/CFS around the time I took this drug and in the year that followed, and these improvements have persisted. However, since I also started regularly taking several new helpful supplements that year (like selenium and N-acetyl-glucosamine, which I believe may be a microglial activation inhibitor), I cannot be sure that it was Nexavir that caused this improvement. The only way to know would be to take another course of Nexavir, and see if I get further improvements. This is something I plan to do.

Hip, what did you notice with Nexavir? Are you saying that Selenium and N-A-G are also immune modulators? My Endo recommended Selenium for my thyroid but I am already taking so much stuff and was not sure what it did. Do most people take this one?

LDN is thought to have an anti-inflammatory effect in the brain (by reducing microglial activation).† LDN is used off-label to treat autoimmune diseases (LDN is believed to reduce B cells), so may be particularly helpful to ME/CFS patients with autoimmune conditions or tendencies. LDN acts on opioid growth factor (OGF) and on the receptor for OGF.†

Some ME/CFS patients initially feel a lot worse when starting LDN, and they have to greatly lower their dose (to 0.25 mg or even less), and then slowly titrate the dose up over many months. There are plenty of accounts of ME/CFS patients doing well on LDN.

I will have to re-think this one now that I know you can start at a lower dose b/c I was not able to tolerate the 1 mg dose that I started with.

Valcyte is not generally a well tolerated drug, and ME/CFS patients often report feeling bad while taking it. Valcyte can also have some serious side effects, and patients taking Valcyte must be regularly monitored in case these side effects start emerging.

Based on my history, I am sure I will fall into the group that gets the serious side effects. Is there anyone reading this thread that had an improvement in autonomic dysfunction from Valcyte?

Thank you again to Hip and all who respond!

 

[Gingergrrl]

This is the other link posted by @Hip that I wanted to ask about. I am familiar with many of them but some are new for me and not all of the links worked when I clicked on them. Has anyone here tried Amantadine, Ampligen, Atesunate, or Etanercept? Also, why would Azithromycin be on this list? Does it have the microglial stuff like minocycline that Gary mentioned? Also why is Valtrex on the list but not Famvir? Just trying to understand it all and think I will end my questions here for the night .

• Amantadine
• Ampligen and Artesunate
• Azithromycin
• Etanercept
• Interferon-beta (Avonex, Betaseron, Actimmune)
• IgG Immunoglobulins (IVIG)
• Isoprinosine (Immunovir, Inosine pranobix)
• Nexavir (formerly Kutapressin)
• Oxymatrine
• Valcyte (Valganciclovir)
• Valtrex (Valcyclovir)

 

[halcyon]

Are you saying that Selenium and N-A-G are also immune modulators? My Endo recommended Selenium for my thyroid but I am already taking so much stuff and was not sure what it did. Do most people take this one?

I'm big on selenium right now. There is evidence (here and here) that it is necessary for proper immune function, and indeed deficiency can lead to worse outcomes with viral illness (Keshan disease, for example).

A few months after I got sick I started to develop reedy nails (vertical ridges) and taking selenomethionine appears to be reversing this. I assume my immune system was burning through it and I was becoming deficient.

 

[Gingergrrl]

I'm big on selenium right now. There is evidence (here and here) that it is necessary for proper immune function, and indeed deficiency can lead to worse outcomes with viral illness (Keshan disease, for example).

A few months after I got sick I started to develop reedy nails (vertical ridges) and taking selenomethionine appears to be reversing this. I assume my immune system was burning through it and I was becoming deficient.

@halcyon Thank you so much and I am going to start taking Selenium and it was recommended to me by my Endo for Hashimoto's. What dose do you take per day? I believe he told me to take 200 mg per day, does that sound right?
Also, do you take it morning vs. night and do you notice any side effects? Last what is selenomethionine vs. regular selenium?