Cyclophosphamide

[lansbergen]

i meant that my heart doesn't beat for about 4s to max 10s when i sleep.

I had it sevaral times when I was not asleep. It was scaring. It stopped beating as if the brain pushed the emergebrake Then after some seconds I felt the heart fill and then it started beating again.

It has not happened in a long time now.

 

[Badpack]

I had it sevaral times when I was not asleep. It was scaring. It stopped beating as if the brain pushed the emergebrake Then after some seconds I felt the heart fill and then it started beating again.

It has not happened in a long time now.

Thats because it "normally" (when you are sick) only happens when you sleep, because your sympathetic nervous system shuts down. So i would think you still have them at night / when you sleep, maybe

 

[lansbergen]

Thats because it "normally" (when you are sick) only happens when you sleep, because your sympathetic nervous system shuts down. So i would think you still have them at night / when you sleep, maybe

Maybe but i think it disapeared like many other symptoms.

Nowadays I sleep like a baby and am rested in the morning. Would the heart stopping not prevent that?

I have improved very much since I take levamisole.

 

[Badpack]

Maybe but i think it disapeared like many other symptoms.

Nowadays I sleep like a baby and am rested in the morning. Would the heart stopping not prevent that?

I have improved very much since I take levamisole.

Do you take levamisole for the immune stimulation or for real nematodes ? I think you are right, at least to a point where it does't affect you much.

 

[lansbergen]

Forgot to mention when it happened I was very severe

 

[lansbergen]

Do you take levamisole for the immune stimulation or for real nematodes ? I think you are right, at least to a point where it does't affect you much.

Not for worms. The dosis I take is to low for that.

 

[Badpack]

Yeah me to. When i was very severe i had it to during the day. The first 2-3 months of my CFS fun. Now, "only" at a servere state, its gone on the day. I tried a lot of *** allready. But i never heard from levamisole. Maybe i give it a try to, not much room to get worse from here i guess haha... how long did it take for you to get a response ? And what dosage do you take ?

 

[lansbergen]

Yeah me to. When i was very severe i had it to during the day. The first 2-3 months of my CFS fun. Now, "only" at a servere state, its gone on the day. I tried a lot of *** allready. But i never heard from levamisole. Maybe i give it a try to, not much room to get worse from here i guess haha... how long did it take for you to get a response ? And what dosage do you take ?

The first thing I noticed within ten minites it eased the horrible pain enough to let me sleep a couple of hours. That made me keep taking it. Improvement was very slow and I am still not cured but compared to what is was I am in heaven.

I take it at night before going to bed. If I forget I have a huge hangover the next day. I have the liquid and put that in some water to lower the nasty taste. I take 50 t0 100mg a day depending on how much goes in my squirt in one pull (I am lazy)

 

[Badpack]

I read a bit about levamisole now, 95% of the stories are about stretching drugs haha, maybe you should try cocaine instead (joke, please don't). But a strange thought. Maybe it doesn't help you because of the immune modulation, maybe it helps you because it activates NMDA receptors. Just like cocaine. So it has a pushing / activating part. Also i read somewhere that ppl think CFS could be a disease surrounding the NMDA receptor. Maybe you are not that far from taking the right medicine for CFS ^^ So if someone out there with CFS tried NMDA activating drugs, write me a PM, im interested about the results.

 

[Gingergrrl]

Sorry thats probable my bad english haha (dont know why i keep using the word hearth instead of heart), i meant that my heart doesn't beat for about 4s to max 10s when i sleep.

Your English is phenomenal and I am so impressed with everyone on PR who is able to converse scientifically in a second language! I thought you meant "heart" but just wanted to confirm. How scary that your heart does not beat for 4-10 seconds in your sleep! Did your cardiologist have any suggestions for this?

Cells are categorized via cell lineage markers. So CD19 and CD20 are different markers, both from B-cells so its both used to talk about B-cells in the end.

So on a blood test, they could call it "CD19" or "CD20" and both would be an equally reliable marker for measuring "B cells"?

Yes im from germany, yes an actual biopsy from the heart haha. Sounds spooky i know, but isnt that big of a problem. It isnt done in the US because of your nice law system and recourse receivables haha.. test for virus and bacteria done, nothing. Its classified as autoimmune carditis of unknown reason.

I just had to Google what "recourse receivables" means... are you sure English is not your first language LOL. How did they explain your diagnosis of "autoimmune carditis of unknown reason"? Also, was there any treatment recommended?

I heard that Rituximab in higher doses does other things to besides destroying B-cells.

What do you mean? I am not sure how it is dosed for cancer but for autoimmunity, there seems to be a fairly standard formula based on body surface area (which is what my doctor used in my case). And in the ME/CFS trial, it seemed to be 1000 mg for all patients regardless of BSA.

So you never can really tell if you dont have autoantibodies or they are still produced by long living plasma cells. So if Rituximab doesnt work, you still dont know (without a sufficient blood test like in CFS) if its an autoantibody or not.

But you can be tested for many auto-antibodies prior to Rituximab and if you are a responder, it is a fairly good guess IMO that this is why. What blood test for CFS were you referring to? Sorry for my confusion!

 

[lansbergen]

I read a bit about levamisole now, 95% of the stories are about stretching drugs haha, maybe you should try cocaine instead (joke, please don't). But a strange thought. Maybe it doesn't help you because of the immune modulation, maybe it helps you because it activates NMDA receptors. Just like cocaine. So it has a pushing / activating part. Also i read somewhere that ppl think CFS could be a disease surrounding the NMDA receptor. Maybe you are not that far from taking the right medicine for CFS ^^ So if someone out there with CFS tried NMDA activating drugs, write me a PM, im interested about the results.

Levamisole has many effects but the core mechanisme is not known yet. It is hard to tell which effects are the most important in this disease.

I am thinking of the superoxide decrease and the thymus hormone mimicking.

 

[jaybee00]

Back to cyclo....

I’ve heard that Fluge and Mella will need to adjust cyclo dosage downward going forward.

If cyclo cures CFS then it’s probably worth doing. If it only is a short term treatment and subsequent treatments are needed then I would imagine cancer risks rise significantly.

But Dr Edwards also mentioned there is a cancer risk with very low doses as well.

 

[ukxmrv]

Back to cyclo....

I’ve heard that Fluge and Mella will need to adjust cyclo dosage downward going forward.

If cyclo cures CFS then it’s probably worth doing. If it only is a short term treatment and subsequent treatments are needed then I would imagine cancer risks rise significantly.

But Dr Edwards also mentioned there is a cancer risk with very low doses as well.

Was that due to side effects or some other reason?

 

[jaybee00]

Yes—difficult for CFS people to take that dosing regimen.

 

[Badpack]

Back to cyclo....

I’ve heard that Fluge and Mella will need to adjust cyclo dosage downward going forward.

If cyclo cures CFS then it’s probably worth doing. If it only is a short term treatment and subsequent treatments are needed then I would imagine cancer risks rise significantly.

But Dr Edwards also mentioned there is a cancer risk with very low doses as well.

Yeah sorry, we got a bit sidetracked in this thread. For now, cyclophosphamide doesn't cure CFS but about 50% show an improvement. 2 out 3 ppl in the first mini study and at least 40% from the CycloME study (because they said they only do the B part with very severe patients if part A shows a response rate of at least 40%)

They already use a smaller dosage (600-700mg/m2) vs (>1g/m2) in a cancer treatment (CHOP regime). But in the end you are using a WW1 poison gas. So the cancer risk is real. But if you do it well,the biggest long time risk, bladder cancer can kept at bay: IV and not oral, drink a lot, pee as often as you can, Mesna support. And the biggest immediate risk, die from heart failure, didnt show up in those lower dosages.

And if you are afraid of taking the risk because of cancer from a treatment, then look up the elevated leukemia rates for CFS patients. So if you wait and do nothing, you maybe end with cancer in the end anyway :/

That biggest things i / we need to know from CycloME are how long does it take before ppl get better and how long does it hold. They do a 18month follow up. So we will know soon.

 

[Badpack]

Did your cardiologist have any suggestions for this?

You can do nothing about it if you can't treat the underlying disease. Besides a pacemaker if it gets really out of hand.

So on a blood test, they could call it "CD19" or "CD20" and both would be an equally reliable marker for measuring "B cells"?

https://www.deutsche-apotheker-zeit...Ocrelizumab_Pfade_7413569-700x551-660x520.png

Lock at the picture i posted for you, its in german but you dont need to understand the language for this one. If you look closely you see every B-cell is CD-19 positive. So thats what makes a B-cell a B-cell. But there are many different stages a B-cell is undergoing. So to differentiate them, there are other surface makers. Like CD20. If you look at the picture. Not every B-cell type is CD20 positive.

Rituximab doesnt destroy all B-cells, only the ones with a CD20 surface marker. So there is a difference in CD19 or CD20.

I just had to Google what "recourse receivables" means... are you sure English is not your first language LOL. How did they explain your diagnosis of "autoimmune carditis of unknown reason"? Also, was there any treatment recommended?

There are some treatments for autoimmune Myocarditis, mostly high doses of prednisolon + MTX / Azathioprin. I tried it but nothing changed. So i think its more of a side effect of CFS and if i can tread CFS in any way my heart will also get better / heal.

What do you mean? I am not sure how it is dosed for cancer but for autoimmunity, there seems to be a fairly standard formula based on body surface area (which is what my doctor used in my case). And in the ME/CFS trial, it seemed to be 1000 mg for all patients regardless of BSA.

Im also not 100% sure, but it seems that it isn't only the B-cell count that makes the difference here. I read something between the lines from what Fluge and Mella said. They used 500mg to treat CFS and the B-cell count was 0 but the patient didnt get better. But with 1000mg he did, still with the same B-count of 0. So there must be something more to this maybe. Speculation at this point.

But you can be tested for many auto-antibodies prior to Rituximab and if you are a responder, it is a fairly good guess IMO that this is why. What blood test for CFS were you referring to? Sorry for my confusion!

Ofc you can test a lot of autoantibodies at this time. But none of them is specific for CFS. I meant there is no CFS blood test at the moment, no marker. So you can not be sure why Rituximab didn't work for some. Maybe because they don't have an autoimmune disease or its simple not enough suppression.

 

[Gingergrrl]

You can do nothing about it if you can't treat the underlying disease. Besides a pacemaker if it gets really out of hand.

I am sorry to hear that and hoping that you will not need to get a pacemaker in the future.

Rituximab doesnt destroy all B-cells, only the ones with a CD20 surface marker. So there is a difference in CD19 or CD20.

That is very interesting and I am hoping you can explain something to me. If Rituximab only destroys that B-cells with a "CD-20" surface marker, then it seems like the blood test to measure B-cell count should say "CD-20" and yet the blood test being used in my case (the lymphocyte subset panel) measures "CD-19" as the marker (and it has stayed at zero since my first infusion). Am I having the correct test?!

They used 500mg to treat CFS and the B-cell count was 0 but the patient didnt get better. But with 1000mg he did, still with the same B-count of 0. So there must be something more to this maybe. Speculation at this point.

Do you mean in the same patient (first he tried 500 mg and then tried 1000 mg) or do you mean with two different groups of patients? My doctor is viewing my case as autoimmune and that we are going after all of my known (and unknown) auto-antibodies vs. trying to treat CFS (whatever that will ultimately turn out to be).

Ofc you can test a lot of autoantibodies at this time. But none of them is specific for CFS. I meant there is no CFS blood test at the moment, no marker. So you can not be sure why Rituximab didn't work for some. Maybe because they don't have an autoimmune disease or its simple not enough suppression.

Thank you and that makes sense. My doctor felt because I had so many known auto-antibodies, combined with me being a responder to high dose IVIG, that I had a decent chance at being a responder to Rituximab. But I agree, in the end, we can never prove why it worked or did not work.