You probably have an autoimmune disease...

[Thebirdman333]

Where did you do the testing?

CellTrend

 

[Learner1]

Think I set a record here @sometexan84


View attachment 47729

So Is whoever ran that test going to do anything about all those antibodies? Like apharesis or Rituximab?

 

[Thebirdman333]

So Is whoever ran that test going to do anything about all those antibodies? Like apharesis or Rituximab?

Lol. This was ran in Germany. I'm in the USA. I had to ship my blood and pay OOP for this... So, no. However, it does get me future access to bc007 when it's approved, maybe ivig, plasmapheresis. But that's way too expensive for me to be trying anyways, I know I have a virus that's producing these aabs. I'll fix it with interferon lambda. This was just more confirmation and a backup plan on the slim chance lambda doesn't do anything. Help aphersis, I know many people with these aabs that it does nothing for or makes them worse. I'm bed ridden, I'm not risking that and an EXTREME crash to fly to Germany or Cyprus and it doesn't work.

Rituximab... That's a big gamble. It sent Whitney from moderate to extremely severe and made others plenty worse. No thanks. Though, I'll acknowledge the fact that I do know one guy that it did help significantly.

I'm much better off doing my own thing, like always.

 

[Learner1]

Lol. This was ran in Germany. I'm in the USA. I had to ship my blood and pay OOP for this...

I'm in the US as well. I did the same, but the treatment has been covered by my insurance.

So, no. However, it does get me future access to bc007 when it's approved, maybe ivig, plasmapheresis. But that's way too expensive for me to be trying anyways,

I wouldn't help my breath waiting for something to be approved. High dose IVIG, apharesis, and Rituximab would be the treatments.

I know I have a virus that's producing these aabs. I'll fix it with interferon lambda.

Which virus is it?

This was just more confirmation and a backup plan on the slim chance lambda doesn't do anything.

It may not

Help aphersis, I know many people with these aabs that it does nothing for or makes them worse. I'm bed ridden, I'm not risking that and an EXTREME crash to fly to Germany or Cyprus and it doesn't work.

Not sure why you're flying to Europe, when apharesis is available in the US.

Rituximab... That's a big gamble. It sent Whitney from moderate to extremely severe and made others plenty worse. No thanks. Though, I'll acknowledge the fact that I do know one guy that it did help significantly.

My doctor carefully selects patients for Rituximab, and he make sure to treat all infections first, so they don't run amok when all the antibodies are removed, and then he puts people on IVIG for at least a year prior to doing Rituximab. From the information I have, Whitney was put on rituximab without doing IVIG first, he only tried IVIG years later.

I went and got a second opinion before doing Rituximab, from Troy Torgerson, a Seattle Immunologist. We discussed multiple options, including Rituximab, stem cells and bortezomib. He thought Rituximab was my best option, was not risky, and would probably help, and recommended the same protocol that my main doctor was recommending.

Given that you're so seriously ill, I wouldn't be discounting treatments that could actually help without getting accurate information, and making decisions on rumors.

I'm much better off doing my own thing, like always.

Hmmm... How's that working for you?

Seriously, that is the worst set of antibodies that I've seen from anyone, including some very seriously ill people.

A sequence of treatments that is extremely helpful is to treat the infections that one has, along with IVIG for autoimmunity and/or Immunodeficiency, then apharesis can be tried as a "test" to see if Rituximab might be helpful, and then Rituximab, given 2 weeks apart, then every 3 months for a year, while doing high dose IVIG every 2-4 weeks. The IVIG provides replacement antibodies after the Rituximab takes the patient's bad ones away.

This approach had been helpful in multiple patients if carefully administered. The doctor who treated Whitney was cavalier in his approach and did not support him properly and no longer treats ME/CFS patients.

 

[IThinkImTurningJapanese]

A sequence of treatments that is extremely helpful is to treat the infections that one has, along with IVIG for autoimmunity and/or Immunodeficiency, then apharesis can be tried as a "test" to see if Rituximab might be helpful, and then Rituximab, given 2 weeks apart, then every 3 months for a year, while doing high dose IVIG every 2-4 weeks. The IVIG provides replacement antibodies after the Rituximab takes the patient's bad ones away.

What would this cost, on average, for the usual patient?

 

[Learner1]

What would this cost, on average, for the usual patient?

In the US, after paying for my insurance premiums and fulfilling my $6500 out of pocket maximum, $0. There are also patient assistance programs for each of the drug companies. I can't speak to how it works in another country.

There is also the concept of value. If treating at this level gets someone out of bed, able to function, and have income, it's a better value than paying for the cheaper treatment that does not get someone functioning.

 

[Thebirdman333]

I'm in the US as well. I did the same, but the treatment has been covered by my insurance.

Well I can tell you I've tried getting approved and I do not get any coverage. I have very bad insurance from my company's LTD which expires end of this year, they don't even cover CBC or CMP, and my parents insurance isn't much better.

I wouldn't help my breath waiting for something to be approved. High dose IVIG, apharesis, and Rituximab would be the treatments.

I'm not, this is a back up plan.

Which virus is it?

Ennteroviruses and EBV.

It may not

I and another individual have researched this drug extensively for 2 years almost.... This is the best shot out of anything available for persistent infection. I have more hope in it then bc007 and many other promising drugs on the mainstream.

Not sure why you're flying to Europe, when apharesis is available in the US.

You said help aphersis (or maybe I misread, in which case sorry) HELP aphersis is only available in Germany and crypus. Normal aphersis is available everywhere but studies have shown it isn't effective and I don't know any one with aphersis treatment and these aabs that it has helped.

My doctor carefully selects patients for Rituximab, and he make sure to treat all infections first, so they don't run amok when all the antibodies are removed, and then he puts people on IVIG for at least a year prior to doing Rituximab. From the information I have, Whitney was put on rituximab without doing IVIG first, he only tried IVIG years later.

I went and got a second opinion before doing Rituximab, from Troy Torgerson, a Seattle Immunologist. We discussed multiple options, including Rituximab, stem cells and bortezomib. He thought Rituximab was my best option, was not risky, and would probably help, and recommended the same protocol that my main doctor was recommending.
Given that you're so seriously ill, I wouldn't be discounting treatments that could actually help without getting accurate information, and making decisions on rumors.

Well, I've been working with a specialist to get my ebv to go away for over a year now and I'm still igm positive (but lower). Maybe I'll consider this an option if worst comes to worst, but again, my insurance is non existent. I didn't get covered for a CBC, tryptase test, many common tests that did NOT get covered. The only thing they ever covered for me was my spinal tap and echocardiogram. All the rest I'm usually paying 60 to 100% OOP even after my deductible was already reached. So I don't see this as a viable option for another year minimum when I can get on slightly better insurance.

Hmmm... How's that working for you?

It's working great, actually. I used to be able not to speak or move at all. Not even roll over. Now I'm sitting up in bed some days, and speaking. Some rare good days I'm even walking some. So, it's going good. Thanks for asking.

Obv some days are worse than others, and I can't sit up in bed sometimes (because I'm trying to learn my new pacing limits). But those days are getting less and less. My SFN is also under control now that I started ara290 on my own. My gut issues are gone now that I'm on larazotide. And my POTS is all but gone now that i got on ivabradine, which no doctor wanted to prescribe me, even though I don't tolerate beta blockers. So again, going good.

 

[ChookityPop]

Well I can tell you I've tried getting approved and I do not get any coverage. I have very bad insurance from my company's LTD which expires end of this year, they don't even cover CBC or CMP, and my parents insurance isn't much better.



I'm not, this is a back up plan.



Ennteroviruses and EBV.



I and another individual have researched this drug extensively for 2 years almost.... This is the best shot out of anything available for persistent infection. I have more hope in it then bc007 and many other promising drugs on the mainstream.


You said help aphersis (or maybe I misread, in which case sorry) HELP aphersis is only available in Germany and crypus. Normal aphersis is available everywhere but studies have shown it isn't effective and I don't know any one with aphersis treatment and these aabs that it has helped.


Well, I've been working with a specialist to get my ebv to go away for over a year now and I'm still igm positive (but lower). Maybe I'll consider this an option if worst comes to worst, but again, my insurance is non existent. I didn't get covered for a CBC, tryptase test, many common tests that did NOT get covered. The only thing they ever covered for me was my spinal tap and echocardiogram. All the rest I'm usually paying 60 to 100% OOP even after my deductible was already reached. So I don't see this as a viable option for another year minimum when I can get on slightly better insurance.



It's working great, actually. I used to be able not to speak or move at all. Not even roll over. Now I'm sitting up in bed some days, and speaking. Some rare good days I'm even walking some. So, it's going good. Thanks for asking.

Obv some days are worse than others, and I can't sit up in bed sometimes (because I'm trying to learn my new pacing limits). But those days are getting less and less. My SFN is also under control now that I started ara290 on my own. My gut issues are gone now that I'm on larazotide. And my POTS is all but gone now that i got on ivabradine, which no doctor wanted to prescribe me, even though I don't tolerate beta blockers. So again, going good.

What are you planning on taking to target EBV?

 

[Thebirdman333]

What are you planning on taking to target EBV?

I tried valtrex for 5 months and while it lowered my igms to neagtive I didn't experience much gains... So I'm thinking of combining valtrex with lambda possibly...

That said, I think once Enteroviruses go away my immune system should repair itself and recalibrate as clearly there is some form of NK cell dysfunction. Also lambda may have some effects on herpes viruses, so, I guess we'll wait and see.

So to answer your question, interferon lambda and maybe some more valtrex.

 

[IThinkImTurningJapanese]

There is also the concept of value. If treating at this level gets someone out of bed, able to function, and have income, it's a better value than paying for the cheaper treatment that does not get someone functioning.

So Rituximab and IVIG have restored your quality of life?

That is wonderful, I think that's several members now that have found relief with that treatment. If I'm correct, that makes it much more successful, and far cheaper than CCI treatment.

 

[IThinkImTurningJapanese]

I can't speak to how it works in another country.

I enjoy extremely affordable health care, but experimental treatments are entirely at my expense. And quite difficult to obtain, until you enter the realm of Traditional Chinese Medicine.

Japan is criticized, rightfully so, for not implementing prophylactic use of Tenofovir for at risk populations. It's a road block to eliminating HIV.

People in Japan with ME/CFS are still being denied disability assistance, due to there being no proof of their illness.

 

[Learner1]

I also heard about someone recovering to full health after a few months on rituximab. But then after participating in a physically exhausting reality tv show she fell back into it, but a new dose of rituximab brought her to full health again. I have found this case particularly interresting because it would mean that autoantbodies alone are able to produce the full range of me/cfs symptoms. She was diagnosed as a "classic" case of ME.

Fluge isnt sold on the idea that rituximab doesnt help some subgroup of patients to some degree, and iirc Scheibenbogen wasnt fully happy with some of the methodology of the study. Fluges speculation nowdays is that instead of a particular autoantibody being the problem there might rather be some type of pattern or a myriad of "functional" autoantibodies going on that refuses to stop. Something like wang et al 2021 where lots of immunomodulating proteins (and others) are targeted by autoantibodies.

That said there is also the problem with rituximab that it cant take out all antibody producing cells, like long lived plasma cells will remain and could be producing the rogue antibodies.

Michael Van Elzakker and Amy Proal I've done a good job of explaining how a wide range of causes can create the full range of ME/CFS symptoms.

Rituximab definitely helps people with B cell autoimmune antibodies of a variety of types. Not all ME/CFS patients have autoimmunity, and of those who do, it is important to treat any active infections first, before killing off antibodies which could be keeping them in check.

The 2 specialists I consulted with both recommended doing multiple infusions over a year of Rituximab, to kill off the antibodies repeatedly and encourage the B cells to not make the bad antibodies anymore.

Well I can tell you I've tried getting approved and I do not get any coverage. I have very bad insurance from my company's LTD which expires end of this year, they don't even cover CBC or CMP, and my parents insurance isn't much better.

There is definitely bad insurance out there, but even the worst insurance will cover a CBC or CMP when submitted with appropriate ICD-10 codes. I have found that doctors who are better at submitting ICD-10 codes that match up with CPT codes for the tests or treatments help get more stuff covered. And I found that most, but not all, the doctor said I have seen know which codes get approved for different things, not all do of course, so I keep a list of ICD-10 codes that apply to me on my cell phone, and I look up all CPT codes and see what is needed to be able to trigger payment by insurance.

Obviously, having a decent insurance plan is essential in the US for getting testing and treatment which improves once outcome.

Normal aphersis is available everywhere but studies have shown it isn't effective and I don't know any one with aphersis treatment and these aabs that it has helped.

I know of several people who have been helped by apharesis/plasmapheresis, including my next door neighbor, just this week. It is not as commonly used in the US, but it is available at many, but certainly not all hospitals.

've been working with a specialist to get my ebv to go away for over a year now and I'm still igm positive (but lower).

Maybe I'll consider this an option if worst comes to worst, but again, my insurance is non existent. I didn't get covered for a CBC, tryptase test, many common tests that did NOT get covered. The only thing they ever covered for me was my spinal tap and echocardiogram. All the rest I'm usually paying 60 to 100% OOP even after my deductible was already reached. So I don't see this as a viable option for another year minimum when I can get on slightly better insurance.

It's working great, actually. I used to be able not to speak or move at all. Not even roll over. Now I'm sitting up in bed some days, and speaking. Some rare good days I'm even walking some. So, it's going good. Thanks for asking.

Obv some days are worse than others, and I can't sit up in bed sometimes (because I'm trying to learn my new pacing limits). But those days are getting less and less. My SFN is also under control now that I started ara290 on my own. My gut issues are gone now that I'm on larazotide. And my POTS is all but gone now that i got on ivabradine, which no doctor wanted to prescribe me, even though I don't tolerate beta blockers. So again, going good.

tried valtrex for 5 months and while it lowered my igms to neagtive I didn't experience much gains... So I'm thinking of combining valtrex with lambda possibly...

If you're still IGM positive for EBV after 5 months of Valtrex, it's not effective in your situation, particularly since you're still bedridden.

There are no drug specifically FDA approved for EBV. Valacyclovir, famciclovir, and valganciclovir are the drugs typically prescribed. If valacyclovir was not effective, you might try either a higher dose - my doctor prescribed 3 g a day, or valganciclovir at up to 1.8g a day, or famciclovir at up to 3g a day. I know different patients who have responded differently to these three drugs.

That said, I think once Enteroviruses go away my immune system should repair itself and recalibrate as clearly there is some form of NK cell dysfunction.

Having significantly treated the infections that I had, I can say that herpes viruses never go away completely. My immune function has improved some, but my immune system is not repaired and recalibrated. Supporting your immune function, either with pharmaceuticals or supplements or both and treating your infections is the best course of action.

It's working great, actually. I used to be able not to speak or move at all. Not even roll over. Now I'm sitting up in bed some days, and speaking. Some rare good days I'm even walking some. So, it's going good. Thanks for asking.

Obv some days are worse than others, and I can't sit up in bed sometimes (because I'm trying to learn my new pacing limits). But those days are getting less and less. My SFN is also under control now that I started ara290 on my own. My gut issues are gone now that I'm on larazotide. And my POTS is all but gone now that i got on ivabradine, which no doctor wanted to prescribe me, even though I don't tolerate beta blockers. So again, going good.

I commend you for working your problems one by one, sounds like you are making some progress. However, I think the true measure of success with infections and autoimmunity is getting the infections to the point of being inactive, unloading the immune system as much as possible, and reversing autoimmunity. It does not sound like your EBV has been adequately or successfully treated, and it sounds like you have a huge autoimmune load.

I have seen patients in your situation get their infections treated, use IVIG for up to 18 months, and then do Rituximab or Bortezomib, some with apheresis as a test first, and recover lost function to have a normal life, out of bed. Obviously, this is a difficult path, and takes having a doctor who's not afraid to be more aggressive, as well as an insurance plan that pays for tests and treatment, or careful use of patient assistance programs.

So Rituximab and IVIG have restored your quality of life?

That is wonderful, I think that's several members now that have found relief with that treatment. If I'm correct, that makes it much more successful, and far cheaper than CCI treatment.

It's not a choice of one or the other - they are not interchangeable. Not everybody needs CCI treatment. Not does everyone need treatment for infections or autoimmunity. Individualizing medicine by using testing to determine what a patient's problems are, and then addressing those problems is what leads to success.

Yes, they helped me. I still have issues with intense aerobic exercise, but I regularly walk 6 miles, golf, kayak, and have a pretty normal life, continuing with monthly IVIG for my ongoing Immunodeficiency.

I enjoy extremely affordable health care, but experimental treatments are entirely at my expense.

Well, in the US, health care is not extremely affordable, and experimental treatments are generally at the patient's expense.

People in Japan with ME/CFS are still being denied disability assistance, due to there being no proof of their illness.

Same thing happens in the US and many other countries.

 

[IThinkImTurningJapanese]

Yes, they helped me. I still have issues with intense aerobic exercise, but I regularly walk 6 miles, golf, kayak, and have a pretty normal life, continuing with monthly IVIG for my ongoing Immunodeficiency.

I'm am so glad that is working for you, I know how difficult recovery can be.

As an American. I am well aware of how difficult the Social Security Administration can be. However, the problem for Japanese is different. They can't, at all, be approved for disability assistance, due to no proof of disabling disease. Since we don't know of any medically identifiable disorder. Yet.

Our health system here is quite comprehensive, and affordable, but focused on proven treatments.

They can be approved for poverty level assistance, which is quite comprehensive. It, however, involves retraining to engage in society in a proper way.

 

[CSMLSM]

So Is whoever ran that test going to do anything about all those antibodies? Like apharesis or Rituximab?

Yes B cell targeting thats exactly what I do and it works great. I use something else though to cause my activated B cells to go through apoptosis.

 

[CSMLSM]

My doctor carefully selects patients for Rituximab, and he make sure to treat all infections first, so they don't run amok when all the antibodies are removed, and then he puts people on IVIG for at least a year prior to doing Rituximab. From the information I have, Whitney was put on rituximab without doing IVIG first, he only tried IVIG years later.

I went and got a second opinion before doing Rituximab, from Troy Torgerson, a Seattle Immunologist. We discussed multiple options, including Rituximab, stem cells and bortezomib. He thought Rituximab was my best option, was not risky, and would probably help, and recommended the same protocol that my main doctor was recommending.

Given that you're so seriously ill, I wouldn't be discounting treatments that could actually help without getting accurate information, and making decisions on rumors.

Maybe you would benefit from what I am doing. I do not come on here very often now but I have lots of threads dealing with all thats necessary. You appear to have knowledge that will make understanding my treatment possible if you wish. Any replies may take 1-2 weeks.

 

[Learner1]

Maybe you would benefit from what I am doing. I do not come on here very often now but I have lots of threads dealing with all thats necessary. You appear to have knowledge that will make understanding my treatment possible if you wish. Any replies may take 1-2 weeks.

Sorry for the late reply. Been dealing with a family emergency. Don't have the time to search and put a puzzle together.

I'm very open to new ideas though. Exactly what are you doing that you think I can benefit from, please? I've looked through some of your posts and can tell you I've taken CBD, NAD+ and NMN, and though they have helped symptoms and given me more energy, they have done nothing for my immune issues.

Thank you.

 

[CSMLSM]

Sorry for the late reply. Been dealing with a family emergency. Don't have the time to search and put a puzzle together.

I'm very open to new ideas though. Exactly what are you doing that you think I can benefit from, please? I've looked through some of your posts and can tell you I've taken CBD, NAD+ and NMN, and though they have helped symptoms and given me more energy, they have done nothing for my immune issues.

Thank you.

Hi Learner1,
Essentially the approach with B cells to inactivate them you know I see but do you know that we have microglia in the brain that also are dysfunctional and get stuck in what is called an M1 activated state. Essentially my treatment deals with both the B cells by inactivating them through apoptosis and also the microglia that will also be changed to an activated anti inflammatory M2 state which resolves the disease producing state.

My treatment does this through what is called the CB2 receptors that are expressed on B cells and microglia when they are in an inflammatory activated state, such as in ME/CFS.

Dr Jarred Younger himself thinks that changing the microglia activated state to an M2 anti inflammatory state will deal with most of the symptomology in ME/CFS and Fibromyalgia and I also believe this from first hand experimentation and now from February sort of prolonged use.

Here is a pertinent video of Dr Jarred Younger explaning some of this and showing the brain inflammation images- Sep 9, 2019 The ME Action Network
Dr. Jarred Younger - Neuroinflammation in ME/CFS - YouTube

and a more recent one from Jun 23, 2022 SolveME
Dr. Jarred Younger Presents: How We Can See ME/CFS Inflammation In the Brain - YouTube

If you still want to know more just let me know what and I will either direct you to a thread or just simply reply to your post.

I have not however taken NAD+ and NMN. I do take a B3 supplement that supports NAD+ and I mentioned only that I put it in a cream. Yes CBD does help but is not what is my treatment, it is only a needed addition in place of an anti depressant (allowed me to come of of Duloxetine). My treatment for the B cells and the Microglia is Caryophyllene (formerly known as Beta-Caryophyllene), aka BCP.

Sorry to hear you had an emergency with family to deal with I hope everything is good now.

I look forward to hearing from you.

 

[kewia]

Well, in the US, health care is not extremely affordable, and experimental treatments are generally at the patient's expense.

But for which reason you get IVIG and rituximab then?
Or did you pay for them?

Afaict, you need a dramatic gamma globulin deficit in Germany to get it, not just because you're having ME/CFS.
For Rituximab, don't know at all how to give reason to be paid by insurance for it. Did you have specific antibodies which would evidently disappear by Rituximab?

 

[Learner1]

But for which reason you get IVIG and rituximab then?
Or did you pay for them?

For Immunodeficiency and autoimmunity.

In the US we pay, even if insurance thinks it's "medically necessary" til we meet our deductible, usually $2-5,000, then copays up to our "out of pocket maximum" (usually $5-8,000). There are patient assistance programs for all of these drugs which can help some.

Afaict, you need a dramatic gamma globulin deficit in Germany to get it, not just because you're having ME/CFS.

Same here.

For Rituximab, don't know at all how to give reason to be paid by insurance for it. Did you have specific antibodies which would evidently disappear by Rituximab?

Yes, I had multiple kinds of autoimmunity. It helped my POTS quite a bit.

 

[kewia]

Yes, I had multiple kinds of autoimmunity. It helped my POTS quite a bit.

So you have at least one autoantibody for which Rituximab is scientifically known to be helpful for, right?

Same here.

Understand, so you have had a dramatic subclass deficit and this was the reason to get it approved?

In the US we pay, even if insurance thinks it's "medically necessary" til we meet our deductible, usually $2-5,000, then copays up to our "out of pocket maximum" (usually $5-8,000).

That's complex for someone with brain fog, but it sounds you need to be rich again to get covered.
Could you tell me how much percent of costs you would save in the end with such an insurance, in case you know it?