Follow up on ILADS post, and what treatment worked before in a study of Chronic Fatigue patients.

Okay, so let’s expand further into this ILADS thing.

I want to address the reason that I got booted from a couple groups on Facebook. It’s because I said that antibiotics won’t fix the damaged B cells. It’s not because I was being a know-it-all asshole or bashing anyone. It was for simply talking about B cells in a group that supported antibiotics being a cure. Even ILADS says a cure is unattainable.  When people would say that they couldn’t afford antibiotics or the first appointment alone I told them that I agreed that things are still very seriously flawed and I could empathize with their plight, as I had been turned away by ILADS at one point too for being too poor. That’s it.

First and foremost I am not trying to throw them under the bus, or point fingers and call them a bad guy. They validate us, so I can at least give them that. Although I feel betrayed that they never told me I was a victim of a crime that could be prosecuted.

Lots of people say that what I am talking about throughout this blog is hopeless. I just want to remind everyone that what I’m talking about is the solution. I talk about the problems that Lyme patients face, and there is a solid solution and even a better treatment option for those who us who have not benefitted from killing bugs with antibiotics. There is a reason that we don’t get better, which means that fortunately there is a solution for that! I DO NOT want people reading this and feeling hopeless, that is NOT my mission here.

I want us all to understand why things are the way they are, and give you hope that there is still much we can do. We don’t have to leave things the way they are, we can change this and ensure EVERYONE is taken care of.  I am keeping those people who can’t afford LLMD’s at the forefront, I am constantly reminding myself to be gentle with how I say things.  There are people dying in the woods alone, and they need us to stand up and fight for them.

There are enough assholes in this world, I am determined to NOT be one of them.  So please, bare with me as I take this journey into truth and lies.  I am human, I am sick too, I get things wrong and my opinion is ever changing.  I don’t have all the answers, I don’t claim to, I am trying really hard not to vilify myself as I go down this path.  I’ve had a crisis of consciousness of sorts, I just can’t ignore those who are being left out because of something as evil as money.  It is happening, you don’t have to take my word for it.  I see it every day on Facebook, people venting that they are giving up because they don’t have the funds.  They can’t afford treatment for their children who are often born with it and they are the ones who feel real hopelessness.  I am taking a stand for them, not bashing anyone.  It’s sometimes hard to get a good feel for what someone is trying to convey in writing, I think if you guys could hear me saying this verbally you’d know without a doubt that I am coming from a place of love, not bitterness.  Although bitterness has it’s place being sick with a disease that isn’t formally recognized 😉

For my next post I think I will talk more about the importance of B cells and what could possibly fix it.  I can NOT give medical advice, as that is highly illegal.  So I have to be careful in how I proceed into it.  That’s actually the reason I have avoided the topic for the most part.  But you guys deserve the truth and ALL of the facts so that you can make up your own mind.  I will do my best to fulfill your curiosity!

To get you started since it may take up to a couple days to get the post together, there was a study done on Chronic Fatigue patients and we all know that CFS patients are sick for a reason, and like lyme there is still a a lot of debate among medical people.  CFS patients are sick for the same reason that TBD (Lyme) patients are sick.  It’s the same mechanism. CFS patients are in the same boat as we are in terms of the occult nature of their illness, and have been victims of research fraud as well.  For example, Suzanne Vernon threw out the infected cells where the Mycoplasma was and then claimed “Hey, look, nothing to see here!”.

 

This is the study that I’m talking about:

https://www.ncbi.nlm.nih.gov/pubmed/26132314

CONCLUSION:
“In a subgroup of ME/CFS patients, prolonged B-cell depletion with rituximab maintenance infusions was associated with sustained clinical responses. The observed patterns of delayed responses and relapse after B-cell depletion and regeneration, a three times higher disease prevalence in women than in men, and a previously demonstrated increase in B-cell lymphoma risk for elderly ME/CFS patients, suggest that ME/CFS may be a variant of an autoimmune disease.”

 

 

And this I highly recommend, I realize is a bit too complicated for a lot you (you do have a permanent brain infection, so give yourself a break), this is what I am going to attempt to break down for you. When you understand the disease then you begin to understand what the treatment would be like:

https://badlymeattitude.com/2015/10/29/occams-razor-all-we-have-are-dull-blades/

 

 

Here are some snippets of the double blind placebo controlled studies, supporting that the patients improved with clearing of the bad B cells :):

https://www.ncbi.nlm.nih.gov/pubmed/22039471

The responses generally affected all CFS symptoms. Major or moderate overall response, defined as lasting improvements in self-reported Fatigue score during follow-up, was seen in 10 out of 15 patients (67%) in the Rituximab group and in two out of 15 patients (13%) in the Placebo group (p = 0.003). “

https://www.ncbi.nlm.nih.gov/pubmed/26132314

FINDINGS:
Major or moderate responses, predefined as lasting improvements in self-reported Fatigue score, were detected in 18 out of 29 patients (intention to treat). Clinically significant responses were seen in 18 out of 28 patients (64%) receiving rituximab maintenance treatment…………

…………..At end of follow-up (36 months), 11 out of 18 responding patients were still in ongoing clinical remission. For major responders, the mean lag time from first rituximab infusion until start of clinical response was 23 weeks (range 8-66). Among the nine patients from the placebo group in the previous randomized study with no significant improvement during 12 months follow-up after saline infusions, six achieved a clinical response before 12 months after rituximab maintenance infusions in the present study.”

CONCLUSION:
“In a subgroup of ME/CFS patients, prolonged B-cell depletion with rituximab maintenance infusions was associated with sustained clinical responses. The observed patterns of delayed responses and relapse after B-cell depletion and regeneration, a three times higher disease prevalence in women than in men, and a previously demonstrated increase in B-cell lymphoma risk for elderly ME/CFS patients, suggest that ME/CFS may be a variant of an autoimmune disease.”

 

 

*They gave the patients a B cell depleter, which is a form of chemo, and the patients improved. We would also benefit from this as our B cells are “taken over” and that’s why we have immune suppression and remain sick.*

 

 

So it’s saying that a good grip of the patients had sustained remission, and the placebo group didn’t improve which means that it actually worked.  I’m excited to explore this more with you and learn more about what this all means for us!

Also keep in mind that Yale had a hand in this crime against humanity, and they have a 24 billion dollar endowment fund. We could all be compensated. That means no more hopelessness, no more suicides, no more becoming homeless, no more abuse from the medical community. I look forward to the day that the crooks are in jail, and we can take back our dignity.

Thank you for hanging in there with me! More to come soon!!

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10 thoughts on “Follow up on ILADS post, and what treatment worked before in a study of Chronic Fatigue patients.

  1. I did not read the studies you posted but but I remember reading about rituximab clinical study for rheumatoid arthritis. And thought that would definitely help my daughter. But we are not able to get it prescribed, correct?

    Liked by 1 person

  2. The treatment seems to be the same for non-hodgkin lymphoma caused by EBV. Ritux or something like it, stem cells maybe (we have damaged lymph node germinal centers – Baumgarth) says the NIH (really), and maybe antivirals. Lyme’s like immunosuppression/cancer and even Allen Steere said so in the 1980s:
    https://www.eurekalert.org/pub_releases/2017-05/du-cvm050217.php

    You are correct to say ILADS does not really care what the truth is, if you ever said it. I will say it. I was a member of ILADS when I blew the whistle and wrote the original version of the Klempner rebuttal (“Klempner was invalid because Dearborn was invalid”). So, people need to explain how ILADS can ignore the fact that Lyme is a disease of immunosuppression and that THAT’s the disease. Explain that. For yourselves.

    Every kind/type of immunosuppression results in the reactivation of latent herpesviruses.

    Liked by 1 person

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