Rituximab??

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thanks for answering.
I only know that I have high histamine and low DAO, but the rest of the markers I have not analyzed. I have not taken any treatment for this either.
I have sqm sometimes and some random intolerance.
I have not been studied for autoimmune encephalitis, I will suggest it to my neurologist. I have almost no muscle weakness, at least it is not a disabling symptom. my biggest problems are cognitive, tinnitus, dizziness, brain fog, fatigue ...
Either way. I will consult everything. Thank you for your kindness.
 

Gingergrrl

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I only know that I have high histamine and low DAO, but the rest of the markers I have not analyzed. I have not taken any treatment for this either.
Was the high histamine level on a blood test? Since you have not tried any treatments, you could discuss with your doctor or try an over-the-counter antihistamine/H1 Blocker and see if it helps.

I have sqm sometimes and some random intolerance.
What is "sqm"?

I have not been studied for autoimmune encephalitis, I will suggest it to my neurologist. I have almost no muscle weakness, at least it is not a disabling symptom. my biggest problems are cognitive, tinnitus, dizziness, brain fog, fatigue ...
I would definitely ask your doctor about autoimmune encephalitis in light of your specific symptoms and positive achr autoantibodies. There are blood tests and panels that can check specifically for this.

Either way. I will consult everything. Thank you for your kindness.
I'm happy to help and it sounds like you have a neurologist who is open-minded and willing to order tests for you which is great! Please keep us posted :)
 
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Sorry I misspelled it, I meant multiple chemical sensitivity.

I will discuss autoimmune encephalitis with my doctor, I hope he knows what I am talking about.

I'll keep you informed.

Thanks 😊
 
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Learner1

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@Xana Have you been thoroughly tested for herpesviruses, with PCR and antibody testing? Cytomegalovirus, Epstein Barr, HHV6 and 7, and if you've had any symptoms, HSV1 or 2 or zoster? And looked into Sjogrens?

For the MCS, have you looked into detoxification strategies?

liver detox pathways.jpg
 

Learner1

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Wrong—that is an asset of the study, not a problem.
"Patients: 151 patients aged 18 to 65 years who had ME/CFS according to Canadian consensus criteria and had had the disease for 2 to 15 years."

Using the CCC which diagnoses through symptoms does not separate out patients with immunodeficiency, infections, autoimmunity, CCI, Chiari, nutrient deficiencies, or endocrine or microbiome abnormalities or combinations of them, so we don't know what was wrong with them.

Rituximab would likely be successful only on those patients who suffered from autoimmunity, since the way it works is to kill off antibody producing B cells.

Just like any intervention, you need to be treating people for whom the treatment is appropriate. Unfortunately, this is a big problem with ME/CFS research, so we need to read about the choice of patients and methods very carefully.
In relation to the study with rituximab, doubts assail me.
I found a study that said that saline infusions improved autoimmune pots and dysautonomia.

One of the problems for which the study did not work was because many improved with the placebo (saline solution), could it be that the placebo was not a placebo but another possible treatment? And another question, is it possible that the responding subgroup is people with positive autoimmunity? Do you know cases of people with worsened positive autoimmunity?

Excuse me if what I'm saying is just nonsense. I am very new to all of this.
Those are all very good questions 😉
 
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@Learner1
I have not analyzed any of this. It is very new to me. I got a slight positive for sjogren and then it disappeared 😅
I will write down and study all this information. On January 12 I have a consultation with my neurologist, I will comment on everything. I hope you are open to listening to me.
Thank you for all the info. Your knowledge is impressive.
 

jaybee00

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Patients: 151 patients aged 18 to 65 years who had ME/CFS according to Canadian consensus criteria and had had the disease for 2 to 15 years
That's because it was a trial of rituximab in ME/CFS patients. They therefore selected people who met ME/CFS criteria. That's how you do clinical trials.
 

Marylib

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@Xana I have been reading your posts and trying to understand your history. You had remission of myasthenia gravis following a surgery. Then another surgery led to the symptoms you have now. IVIG has been helpful but the supply is gone for now.

People develop ME/CFS from all kinds of things - including surgery. But the trick is to treat your symptoms. This may sound too simple, but have you tried IV saline infusions? Some people find that simply restoring enough blood volume can help a great deal. Your doctors would want to make sure your electrolytes are balanced in terms of boosting the blood volume that way. I hope you can find something that helps you.
 
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yes, you have understood correctly. Now my symptoms of myasthenia gravis do not exist but I have other cognitive ones that my neurologist does not explain. I'll ask him about autoimmune encephalitis. Yes I would like to try the salt water infusion, I will tell you. I also suspect sjogren ... 😥
 
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@Learner1 @Gingergrrl
Sorry to interrupt you again. I have been reading some of your posts and I have seen that they had a marked autoimmunity, but I can't find what kind of antibodies.
If it's not indiscretion, would you mind telling me how you tested positive, or if you think I might be suitable for rituximab with my autoimmunity?
My antibodies are:
positive ANA (1: 320), speckled Anti Ro 52 (sjogren / lupus), anti dSNA (slightly positive), positive organic antibodies and anti achr.
I know I should consult my doctors, but I would like to know their opinion because they have tried rituximab and have extensive knowledge about the treatment.
Thank you.
 

Learner1

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have been reading some of your posts and I have seen that they had a marked autoimmunity, but I can't find what kind of antibodies.
If it's not indiscretion, would you mind telling me how you tested positive, or if you think I might be suitable for rituximab with my autoimmunity?
@Gingergrrl and I had different groupings of antibodies, though we had a couple of the same ones. It is not so important which antibodies we have, only that the antibodies causing our significant symptoms are made by B cells, and Rituximab cuts off the capability of making the symptoms causing antibodies, so the fact that you have different antibodies shouldn't matter. The question for your doctor should be "Are my antibodies made by B cells?"

The job of Rituximab is described starting at 00:58 here, though the test of the video is very well done and easy to understand and well worth a watch:

 

Learner1

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That's because it was a trial of rituximab in ME/CFS patients. They therefore selected people who met ME/CFS criteria. That's how you do clinical trials.
ME/CFS is a symptomatic diagnosis. That is, we share the sane symptoms, but have different drivers and etiologies of our disease. Take Jen Brea for instance, who had a virus and spinal issues. Or Jeff_w who had spinal issues. Or the Royal Free Hospital outbreak which was due to a virus. Or the patients who have been autopsied and herpes it Cocksackie viruses were found in their brains. Or those with chlamydia pneumoniae, Lyme or Lyme co-infections. It those of us with autoimmunity or immunodeficiency. These patients are not all the same. Researchers have recognized this;

https://www.healthrising.org/blog/2017/07/15/immune-subsets-chronic-fatigue-syndrome-younger/

https://www.publichealth.columbia.e...al-evidence-atypical-chronic-fatigue-syndrome

https://www.frontiersin.org/articles/10.3389/fneur.2020.00828/full

This recent video presents some very interesting discussion of how these many different etiologies/drivers produce the same symptoms as they are all interacting with the same parts of the nervous system:


Therefore, if researchers are to help us find evidence based treatments, it would be prudent to identify which subgroup of patients they are targeting and try the treatment in only those patients.

Not doing so would be like taking all cancer patients as a group, and removing the breasts of everyone in the study - while it might be useful for those with breast cancer, it would not be helpful for those with prostate cancer, leukemia or glioblastoma. Or taking everyone with a broken leg, no matter how complex the fracture or the location, like near the ankle hip or knee, and putting a cast on below the knee for 6 weeks.... This is how misleading results are obtained from seemingly good studies... It is prudent to read patient selection, methods, and discussion, and not just the conclusion.
 

Gingergrrl

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@Gingergrrl Sorry to interrupt you again. I have been reading some of your posts and I have seen that they had a marked autoimmunity, but I can't find what kind of antibodies. If it's not indiscretion, would you mind telling me how you tested positive
It is definitely okay to ask and if I miss anything in the future, please tag me again or send me a PM. I tested positive for the N-Type Calcium Channel Autoantibody (also known as the LEMS autoantibody) and also for Anti GAD65 on panels from the Mayo Clinic. Both are paraneoplastic autoantibodies and the original Mayo Panels that I did were called PAVAL and DYS1 (which I believe is now called DYS2).

I also tested positive for seven autoantibodies from Cell Trend Lab (in Germany) and I can find the results if they would be helpful but it was the anti-muscarinic, and alpha & beta adrenergic autoantibodies. Additionally I have Hashimoto's (and test positive for both Hashi's autoantibodies) and my ANA Titer was 1:160, speckled pattern.

More recently, I tested positive for anti Cardiolipin Ab (one of the anti-phospholipid autoantibodies) but it was just marginally positive and could be a lab error so I will be repeating this test and doing the entire APA Panel in January (soon).

or if you think I might be suitable for rituximab with my autoimmunity? My antibodies are: positive ANA (1: 320), speckled Anti Ro 52 (sjogren / lupus), anti dSNA (slightly positive), positive organic antibodies and anti achr.
I can't say if you would be suitable for Rituximab but it is definitely used in Myasthenia Gravis and you test positive for anti ACHR. I have also known of it being used in Lupus. What does your doctor say? In my case, it was approved for LEMS (Lambert Eaton Syndrome) and my doctor felt that there was a very good chance that I would be a responder b/c I had such a positive response to high dose IVIG (and he was correct).

On a side note, the Rituximab trial for ME/CFS was flawed and this has been confirmed multiple times by Drs. Fluge & Mella (who conducted the trial) and by Dr. Carmen Scheibenbogen. They ran low on funding by Phase 3 of the trial and had to cut the dose of Rituximab for all subjects in the trial in Phase 3.

Many subjects were responders in Phase 2 before they cut the dose to 500 mg for all patients. In some patients, this meant that the dose was too low to kill all of their B-cells. My own personal dose of Rituximab was 600 mg (using the Body Surface Area or "BSA" Formula) and I am not a tall/large person.

This does NOT mean that Rituximab was proven to be beneficial, but the trial in Phase 3 was flawed by the dose reduction so the results were not valid or reliable. I had hoped that some day they would repeat the trial using the original dose from Phase 1 & 2 (where many subjects were responders) but they do not have the funding and will not be doing so.
 

Learner1

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On a side note, the Rituximab trial for ME/CFS was flawed and this has been confirmed multiple times by Drs. Fluge & Mella (who conducted the trial) and by Dr. Carmen Scheibenbogen. They ran low on funding by Phase 3 of the trial and had to cut the dose of Rituximab for all subjects in the trial in Phase 3.

Many subjects were responders in Phase 2 before they cut the dose to 500 mg for all patients. In some patients, this meant that the dose was too low to kill all of their B-cells. My own personal dose of Rituximab was 600 mg (using the Body Surface Area or "BSA" Formula) and I am not a tall/large person.

This does NOT mean that Rituximab was proven to be beneficial, but the trial in Phase 3 was flawed by the dose reduction so the results were not valid or reliable. I had hoped that some day they would repeat the trial using the original dose from Phase 1 & 2 (where many subjects were responders) but they do not have the funding and will not be doing so.
Thank you for making these important points.

My dose was 1,000mg, which my doctor ordered and the second opinion I got also recommended that dose.
 

Judee

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As for Equilibrant, I found 2 sets of ingredients on the web:

1) astragalus root extract, shrubby sophora root extract, olive leaf extract, licorice root extract, and shittake mushroom extract.

2) active ingredients, plus Dextrose, Cellulose, Silicon Dioxide, Cellulose Gum, Magnesium Stearate (Vegetable Source), titanium Dioxide, Glycerine, Stearic Acid (Vegetable Source), Yellow #5, Blue #2 and Carnuba Wax

I'm not sure which is correct or if both are, but as someone with hyper POTS, licorice root could raise blood pressure alarmingly which could be a stroke risk, and dextrose is typically a corn derived sugar, and many of us are allergic to corn, which could lead to anaphylaxis.
The attached shows the ingredients they list on their website...but yeah, some of us here are sensitive to some of those ingredients. :(
 

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Learner1

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So you get Rituximab later?
How often/long did you take it to get improvements?
I did 5 of the 6 infusions my doctor planned. My last infusion was right as COVID hit my community, so I stopped. It's usually 2 infusions two weeks apart, then every 3 months to whack the B cells til the body learns not to make the bad antibodies any more. It took about 6-9 months to recognize the benefits. My MCAS and POTS are much improved.