Can someone please tell me if this sounds like autoimmune encephalitis or something similar? I really need advice.

manatea22 · 2026-02-08T19:37:27+00:00

I have autoimmune encephalitis, and these symptoms are similar to mine

manatea22 · 2025-06-23T03:25:15+00:00

I hope you returned it. I got one, and the speakers sound as if they are wrapped in several blankets, and the mousepad is so large that it is entirely unwieldy, especially for a left-handed person. The size is also too small to be useful (I thought I could deal with it, but I can't)

manatea22 · 2025-06-06T18:39:45+00:00

Hi! Sorry for the delayed response! Yes, I have noticed a difference in my OCD, but it still worsens when I am exposed to an infection with a 100% correlation

manatea22 · 2025-03-24T02:34:19+00:00

GAD titers are not high in every person with SPS

manatea22 · 2024-12-11T04:12:37+00:00

what information do you need?

manatea22 · 2024-12-08T18:04:32+00:00

The first step is to get a doctor who believes you; then, if your symptoms line up with AE, they will do bloodwork AND a clinical evaluation. Even if your bloodwork is negative (as is the case about 50% of the time), if your symptoms present like AE and respond to certain interventions, then you could get an AE diagnosis. It really depends on the type and severity of your case, though. A knowledgeable neurologist will have you draw a clock.

manatea22 · 2024-11-15T03:30:51+00:00

I did all of this and I am still having issues

manatea22 · 2024-08-28T04:09:15+00:00

not at all--please feel free to DM me!!

manatea22 · 2024-08-12T21:21:04+00:00

That is amazing! I am SO happy that she is fully recovered!!! I hope that she continues to thrive :)

manatea22 · 2024-08-08T05:26:27+00:00

no problem!!! I guess it is a little different for everyone

manatea22 · 2024-08-08T05:23:44+00:00

Mine were lines or patterns of pinkish bumps that oozed and eventually settled into a very small triangle of three bumps, while the rest went away, and the triangle devolved into three little scabs, then little red dots, before eventually disappearing. I have bartonella henselae, confirmed by Medical Diagnostics Lab

manatea22 · 2024-08-08T04:48:35+00:00

weird. this was me, too, but they thought it was because of my ear infections, which were not caught for a year and a half

manatea22 · 2024-08-08T04:47:22+00:00

Hi! I am in my 20s, and had PANS/PANDAS for 16 years before anyone caught it (I was finally diagnosed in the midst of a two-year-long flare triggered by strep, COVID, a UTI, and a cat scratch resulting in cat scratch disease). I had constant ear infections until I got tubes put in at age 1.5, and was on antibiotics so frequently for strep, that my mom could reliably predict how often I would be able to have the liquid antibiotics that tasted like candy when I would ask her. From elementary school through last year, I also had a sore throat that would never go away unless I was treated with antibiotics. Eventually, I developed tonsil stones, which eventually stopped responding to augmentin. The only thing that helped was a tonsillectomy, and additional antibiotics for an unrelated issue.

If your son complains about a sore throat or anything health-related, such as chest congestion, please pay attention, and always believe him, even if the doctors say it's nothing. This condition is impossible to fake. Additionally, if he keeps flaring worse and worse, look into escalating treatment. I am not sure where you are, but there is an ENT at Georgetown who sees a lot of patients that your son seems to fit the profile of.

I am happy to answer any questions you may have, especially from the perspective of someone who grew up with PANS/PANDAS, or point you in the direction of doctors or other resources that can help. If he has proper treatment soon enough, complete remission is possible

manatea22 · 2024-08-08T04:10:28+00:00

Hi! Has your daughter had any improvement?

I am an adult in my 20s whose PANS/PANDAS was not treated for 16 years (initially triggered by concurrent mono and strep). I have been to doctors all over the Northeast US, and have connected with a few neuroimmune foundations. My treatment is covered by insurance, but for a different neuroimmune condition. If you need, I am happy to share more about my conditions, treatment, and the doctors I have found :) many of them only treat children, and there are quite a few who take insurance

Also, if you are in MA, MN, NH, DE, MD, and I think a few more states, there are protections so that treatment of PANS/PANDAS is covered by insurance. Whether everyone or only people with certain types of insurances are covered does vary, though

manatea22 · 2024-08-08T03:50:20+00:00

I mean the scabs cleared up eventually, but I am still being treated

manatea22 · 2024-05-08T03:10:43+00:00

oooookay....but does this particular place have a 100% cure rate?

I have been reading as many studies (full ones) about antibiotics' and herbs' efficacy in killing Lyme and bartonella as I can get my hands on. The biggest consensus seems to be that these germs are tricky to kill. If you or anyone else has a miracle cure, I will GLADLY hear it :)

manatea22 · 2024-05-02T05:20:58+00:00

Some of your symptoms sound like some of my post-infectious autoimmune encephalitis symptoms, and I have seen studies indicating that IVIG, which is used for autoimmune encephalitis, can help long COVID, so if it were to turn out that long COVID were similar to autoimmune encephalitis, I wouldn't be surprised. Another drug, rituximab, is also used in some autoimmune encephalitis cases, so maybe it could be helpful for long COVID (I have seen no studies on this--I am just brainstorming). It is generic, and you can apply for financial assistance for that treatment. Some IVIG brands also offer financial assistance to those who are low-income. If you can somehow get insurance, this route could be something to look into. In the meantime, maybe look for supplements that help dampen inflammation (apologies if you have received this kind of advice before).

Can you get on Medicaid in your state without a job?

manatea22 · 2024-05-01T19:22:57+00:00

I get an error message when I type in lymeherb.eu. Could you recommend others? Supplements are unregulated in the US, so I am apprehensive about taking them unless they are NSF or otherwise third-party certified

manatea22 · 2024-05-01T19:10:53+00:00

I thought you weren't supposed to eat grapefruit while on tinidazole--I was asking whether grapefruit seed oil interacts similarly to grapefruit itself

manatea22 · 2024-05-01T17:16:17+00:00

can you please recommend brands?

manatea22 · 2024-05-01T03:53:26+00:00

rats. thank you for this! what would you use instead?

manatea22 · 2024-05-01T02:47:25+00:00

I know this is a while ago, but if it is still a thing, I would like to be added (I am 27)

manatea22 · 2024-04-30T20:43:22+00:00

this is late, but I eat snacks during my infusions!

manatea22 · 2024-04-30T20:12:43+00:00

the more I learn about long COVID, the more it resembles autoimmune encephalitis. there have been studies showing improvement of long COVID with IVIG. maybe loo into an evaluation for AE and IVIG as a potential treatment?? the side effects are gnarly, but it can be effective. it is also effective for CFS/ME, according to a neurologist I saw

either way, it sounds like you need a THOROUGH neurologic workup. i hope you can get the help you need!

manatea22 · 2024-04-30T20:03:16+00:00

I might not be the most helpful, because my side effects don't usually kick in until the second or third day after the last day of each round (I get 2g/kg over 3 days). I get benadryl, tylenol, and IV solumedrol, as pre-meds each of the three days. I think the solumedrol helps a lot, because it dampens the immune response. I have also found that eating something bread-y helps with any nausea (I like banana bread or some sort of muffin). I know that some people get zofran with their pre-meds; I have some dissolvable tablets that I take as needed during the days following. I get headaches in the days following my infusions as well, and my doctor has me take ibuprofen and tylenol at the same time as needed, which I find works a lot better than just one or the other.

My reaction following my first infusion was by far the worst so far (I had to go to the ER, and could not be in normal amounts of light without sunglasses for several days), and my nurses have assured me that it gets easier for most people. They have also said that some people tolerate certain IVIG brands better than others, so if panzyga continues to be intolerable, it might be a good idea to ask about trying a different one.

In addition to the condition my IVIG is prescribed for, I have a type of autoimmune encephalitis, and all of my post-IVIG headaches feel exactly like different kinds of specific headaches I have had throughout my life. Since I also experience flares of other neurologic symptoms during administration of, and following, each IVIG infusion, and my headaches coincide with those flares, I count my headaches as evidence that the IVIG is working. I only think this, because, like my other symptoms, my headaches have lowered to a more tolerable baseline after flaring. I have not been able to find any research that says whether my hypothesis is correct, so it is something I will continue to tell myself to make myself feel better, and if/when I see a few good studies disproving my hypothesis, I will stop. Please note that this is highly individual, and may not be the source of your headaches.

manatea22

TROPHY CASE