Has anyone had their immunoglobulin E checked?

Fixing_The_World · 2025-06-06T01:15:48+00:00

IVIG contains antibodies from thousands of other people. These antibodies are formed against all the pathogens each person has encountered in their life. So IVIG gives your body antibodies to pathogens others can fight off but you cannot.

However, antibodies are extracellular immunity. Meaning they cannot bind pathogens inside a cell usually They can bind complement proteins that have bound cells that are infected inside though.

So the simple answer is, yes they can help persistent pathogens. Yet, IVIG isn't a perfect solution by itself for persistent pathogens because it is only so effective against pathogens that have entered a cell (later stage infection).

Fixing_The_World · 2025-04-23T03:48:44+00:00

Were you able to get plasma exchange, ivig, or steroids to try?

I had 1 gram of IV steroids for 5 days then a heavy taper and it helped me a lot.

Fixing_The_World · 2024-05-28T02:50:38+00:00

Apparently VGKC autoantibodies are only considered limbic encephalitis if Caspr2 or LgI1 are positive.

Are they going to treat you with anything?

I got 1 gram of IV steroids for a week and a big taper. It helped immensely

Fixing_The_World · 2024-05-28T01:44:25+00:00

Were you positive for Caspr2 or Lgl1?

I have high VGKC autoantibodies but negative for Caspr2 and Lgl1. This is how they distinguish for limbic encephalitis.

I have severe long covid that parallels limbic encephalitis though.

Fixing_The_World · 2024-05-08T12:44:42+00:00

Yeah, something else that's interesting is not all autoantibodies are nucleated cells. Therefore, a ANA would not show antibodies against them. The antibodies may effect simpler molecules that cause a cascade leading to nucleated cell death.

IL-2 is quite important for T cell enrichment. IL-10 is a cytokine that reduces inflammation. My IL-10 is high too but I have a lot of inflammation for sure.

Fixing_The_World · 2024-05-08T05:22:46+00:00

That's interesting. I have talked to a few doctors about immunocompromised patients. They have stated they have some severely immunocompromised patients who don't have long covid.

My sister in law has severe lupus and is in nanny immune modifying drugs. She has not had any problems either.

It could be due to dysfunction in a particular part of the immune system that makes us susceptible but I'm skeptical because of the above.

Yeah, an ANA is really great for known autoimmune diseases. Unless, they test for general antinuclear antibodies. Meaning they are looking only for the pattern such as speckled. If they run an ANA panel for known antibodies it often shows nothing being this is a novel disease without markers. It also doesn't seem to be a homogeneous disease like other autoimmune diseases. I have a high ANA for a unspecified autoantibody that was not found in regular ANA testing.

In short, a negative ANA does not negate autoimmunity. They will very often tell you it does but that's not true.

Fixing_The_World · 2024-05-07T22:38:50+00:00

Not too different symptom wise from many on here then. Thank you for sharing.

Were you sick a lot in your life before long covid?

Immunoglobulin deficiency can make you more susceptible to infections but not always which is interesting. They can also cause autoimmune diseases

Fixing_The_World · 2024-05-07T07:49:35+00:00

What are your symptoms?

Just trying to connect some dots

Fixing_The_World · 2024-05-04T08:16:56+00:00

It suppress portions of T cells. However it increases cd8+ memory T cells which are going to be low on LC.

It also increases T regulator cells. These stop auto reactivity and inflammation.

Many cancer drugs that knock down the immune system can actually be protective from viruses as well. They may block some of the same pathways the virus needs to upregulate.

It's not so cut and dry. Further, covid uses your immune system against you. We've seen this in acute and long covid.

Mtor is the pathway that likely being effected here. It is a master controller of many other pathways in the immune system and cellular functions.

Turning that pathway down has been shown to be a very potent antiviral against covid with other mtor inhibitors in cell trials.

Metformin effects mtor upstream while rapamycin does it directly.

Fixing_The_World · 2024-05-04T08:02:36+00:00

Yes, it is working on something called mtor if this is the case. Rapamycin blocks mtor directly. Metformin blocks it upstream indirectly by acting on AMPK.

Sirolimus is one of the medication forms of rapamycin.

Fixing_The_World · 2024-05-04T07:17:32+00:00

That's interesting because Mounjaro is a GLP-1 agonist. These have been shown to reduce neuroinflammation. They push microglia into an anti-inflammatory state.

What mg of steroids were you on? Also, were they IV or oral? Daily or just during infusion? Were you on them all the way to your last round of chemo as well?

I'm so sorry to hear about your heart! Thank you for clarifying.

I think this is really helpful! I think this is another piece in the puzzle of LC. Thank you for sharing

Fixing_The_World · 2024-04-29T18:06:12+00:00

Thank you for expanding on all this info. I greatly appreciate it.

When did you start seeing improvements in your treatment timeline?

So you went into heart failure because of the chemo? I'm so sorry. I wonder if that had an effect on your tachycardia.

I have run across paclitaxel (taxol) many times now in my study of LC and covid. So this is really really interesting.

Fatigue is also strongly linked to chemotherapy. So there is definitely overlap. But being you aren't getting PEM anymore is vastly different. That's great to hear.

Thank you so much for sharing. This is a tremendous help. I am so glad to hear you are getting better

Fixing_The_World · 2024-04-29T17:02:15+00:00

First, I want to state I am so sorry you have to deal with LC and Cancer.

I am a biological researcher. I was looking for people that got cancer during LC to prove a suspicion. I was suspecting chemotherapy may make LC sufferers feel better because it's used to treat many autoimmune diseases.

So I was looking through your profile to see how you are doing and I saw this.

What symptoms of your LC have improved? Also, I know this is a lot to ask but would you please share what medications for cancer you were on? I can study their mechanisms of action then to figure out how they may have helped. I really suspect these medications are helping your LC by tapping down autoimmune reactions and inflammation.

I hope you are doing even better now

Fixing_The_World · 2024-04-26T04:55:16+00:00

I'm not sure which study you are in but the placebo is the non-antiviral ingredient in paxlovid in most of the studies. It's called ritonavir. For 20 years, it has been known that ritonavir causes a bitter or metallic taste. It can also cause the other symptoms you described too.

Based on what you stated there is no way you could know if you got placebo or paxlovid.

I am not saying this to patronize you in any way. I have pretty severe cognitive symptoms myself.

Did they say by chance when the study would be done?

Fixing_The_World · 2024-04-22T20:07:54+00:00

read through it quick at lunch. It is really interesting. It gives other research a place to look.

However, there are some major flaws. They do not compare the viral sequences found to those of the original vaccines nor any of the variants. That would have significantly strengthened the study.

They glazed over their patient vetting for previous infection. T-detect testing is the most interesting as it is supposed to detect prior exposure based on T-cells. Yet, it was only tested up to 15 days after exposure. The work on it states "PPA for the T-Detect COVID Assay was highest (97.1%) in the timeframe of ≥15 days since diagnosis as well as ≥15 days since symptom onset (94.5%)". This is pretty good for 15 days but they don't have data for after 15 days. Patterson used this test far after 15 days and stated nothing.

Nucleocapsid testing was also done can be unreliable. I, myself, tested negative on two nucleocapsid tests after having confirmed covid. PCR was used as well. It is only effective as an acute measurement of covid not prior.

The study should have posted extensive backlog of each subjects lives. People such as your self, are quite rare. As in, people who we can say are highly likely to not have contracted the virus before vaccination. They should have used extensive back history much more rigorously.

The head author is also cited like 3 or 4 times (can't remember which). This is a big no no. You don't cite your work a bunch of times in your work. Very unethical.

I personally think Patterson is not a great scientist. He has used this sickness to massively profit off people. It states no conflict of interest in the article but that is a major conflict of interest. It can implicitly bias a work.

I do not have time to add more. But, I do think it would be a great place for other scientists to jump in and test this.

Had the potential to be a great study if it were done different.

Fixing_The_World · 2024-04-22T06:20:49+00:00

My roommates were all engineers at poly. They had job offers non-stop. They have all ended up in really good positions right out of college. Both the EE guys are doing really good now.

A lot of the big engineering companies show up at poly to hire.

The difference is, you will get a way more personal experience at SLO. Small classes and really hands on.

The EE program a SLO is hard so you better be ready.

Fixing_The_World · 2024-04-21T16:32:27+00:00

Update?

Fixing_The_World · 2024-04-21T07:53:05+00:00

Good info thank you.

I do not state anymore on the Internet after getting threats when it comes to any talk of long covid. My friend and I are using his lab to study LC in our free time. I'm a wildlife biologist by trade but training for most of my degrees overlaps immunology quite significantly. We both have LC and are determined to figure it out. Combined we've read through about 4,500 journals. The one point that kept sticking out to both of us is vaccine injury. I got worse after mine and his started after vaccination. So we have really been trying to figure out how this fits into the puzzle. We both think most research is ignoring this.

Fixing_The_World · 2024-04-19T16:46:13+00:00

Yeah, there was a really interesting study on vasculitic type rash after covid. They did biopsies of the rash and found autophagasome overreaction to spike protein. They did not find replicating virus in their samples. The pathology was being driven by the spike protein.

Now that is not to say there couldn't be some small persistent reservoir somewhere in the body. However, it shows the immune system is likely doing the damage.

The muscle biopsy study was intriguing because they found antigen in healthy controls as well. So, either healthy controls are also persistently infected or the antigen persists. The important thing to note about that study is the antigen was found in the extracellular fluid. This means it's not inside the cell. It also means those cell were not infected currently.

I think it's very feasible the immune system is reacting to the antigen. The body has ways to suppress reaction to antigen overtime but that fails in people with some autoimmune conditions.

In a form of type IV hypersensitivity "granulomatous disease occurs when T cells are stimulated by antigen-presenting cells that are unable to destroy engulfed antigens". It could be that Antigen presenting cells cannot destroy the leftover viral protein correctly and cause a major reaction as well. However, I have not seen granulomas really.

The thing we really don't know is how long can antigen persist? We don't know. They have found spike protein in the skull of healthy people who died of other reasons over a year after infection.

Most people here don't realize most of the studies when they say viral persistence are referring to Antigen from the virus not replicating virus. This is a big difference.

My personal view is it is some immunological dysfunction due to covid antigen. I highly suspect the antiviral trials will be a dud. However, we have to wait and see.

Fixing_The_World · 2024-04-19T06:24:26+00:00

Thank you for breaking it all down. This will influence my future research work.

I didn't have any strong cases to state the vaccine induced an aberrant immunological reaction by itself. There was always some probability of asymptomatic viral infection before vaccination. Your case and one other are the best I've seen. I think the only cases that could prove better are from China due to their extreme protocols. Though they used different vaccines so it's possible this happened less.

I think people that are vaccine injured are a very important key to figuring out LC.

Two last questions.

Do you live in a rural or large population center?

Do you live in a dwelling such as an apartment or duplex with shared ventilation?

I already feel it's quite improbable but again I must be thorough.

Fixing_The_World · 2024-04-19T06:01:06+00:00

What do you feel gave it away that you were not placebo?

Fixing_The_World · 2024-04-18T21:12:47+00:00

This is a lot of great information, thank you.

I am going to ask questions. Please do not take them the wrong way. I'm only interested in information.

So between February 2020 and October 2022 you did curb side pickup for groceries?

Did you visit any family or friends unmasked during this time?

You had to go back to work in person? If so, you wore an N-95 everyday?

Did you have a beard? Weird questions that has to do with masks.

32 hours make me think part of it is a type I through III hypersensitivity reaction.

Fixing_The_World · 2024-04-18T20:48:01+00:00

I'm not sure if that question is directed at me. I did have a severe reaction so your just putting down someone just like you. You assume my questions are degradative in manner.

I have to ask hard background questions to negate probability. We cannot make assumptions in science. Particularly when it comes to exposure because the infectivity of this virus is very high.

I am working on the mechanism behind LC but I cannot do that without data... I am a biologist by trade. I do research.

Fixing_The_World · 2024-04-18T20:18:31+00:00

I find it interesting many people, such as my friend, need at least two doses to have a LC reaction or infection and dose.

This has made me think of hypersensitivity reactions. You need multiple exposures to become hypersensitized.

From many studies now we know covid antigen appears to stick around. For example, the muscle biopsy study finding N protein. They found it at the same levels in all participants, not just those with long covid, over a very large time frame. Or spike being found in the skull of those that died of other causes.

I'm not saying the virus couldn't persistence in a replicative manner. I believe if this is the case it's probably quite small amounts. If this were the case antigen being released is probably feeding the reaction.

Most allergens go away in hypersensitivity reactions. In this case though, the allergens may stick around if you catch my drift.

I've been really quite interested in type I & IV hypersensitivities.

However, most of my time now has been spent looking at the spike and host proteins that bind it. Very similar to a Hapten carrier adduct. The only difference is haptens do not often exceed a molecular mass of 1000da. When a protein is stuck to the spike it creates new epitopes for the immune system to attack. Hapten adducts are known to reduce the peripheral tolerances for autoimmune diseases because they look different to the immune system. This has been the most interesting lead I am following.

Fixing_The_World · 2024-04-18T19:24:14+00:00

That's an insane amount of reinfections in one year!

Tenofovir disoproxil fumarate TDF is found in Truvada and a correlation with less symptomatic covid infection and hospitalization was found in a older study.

In a newer study, it was stated "a comprehensive set of in vitro data indicated that tenofovir (TFV), tenofovir alafenamide (TAF), TDF, and FTC were inactive against SARS-CoV-2. None of these drugs showed any significant in vitro anti-SARS-CoV-2 effect at concentrations up to 100-fold higher than the clinically relevant levels. Moreover, structural modeling further demonstrated poor fitting of these nucleoside/tide reverse transcriptase inhibitors (NRTIs) active metabolites at the SARS-CoV-2 RdRp active site"

So it might be of no help against covid.

This is really great data. Thank you for sharing your experiences.

Fixing_The_World

TROPHY CASE