My 23 year old who is 13 years PANDAS free with likely recent PANS episode (has had COVID vaccine)

[luckyone]

I don’t post much but am a long time member. I first posted in 2010 over a year after my daughter recovered from a severe 1 year long episode of PANDAS anorexia. That post is still available if you do a search. She was 10 and had overnight sudden onset severe anorexia /OCD. She had high aso titers for almost a year. There were very few people who could help us at the time so it took 3 months to even figure out the issue. She eventually returned to normal almost as suddenly as it came on. She has been great ever since. I posted another update in 2016 when she was starting college. She had no further PANDAS related issues until this year. She rarely was sick (probably because of her over reactive immune system) but we always continued to have her tested for strep even with a slight sore throat.

She graduated from college in May of 2020. She was accepted to medical school later in 2020 and started in July of this year (2021). Her school was very pushy with the COVID vaccine which we did not want her to get but she got it anyway because she felt she was going to be prevented from fully participating in everything without the vaccine. I am not anti vax at all. We did delay her 12 y/o vaccines until she was 15 and she got them all separately. I just felt like the COVID vaccine risk vs benefit for her did not warrant it at all.   Nevertheless, she received the vaccine in early June. When she started school in July she was loving school! She had met many new friends and was doing great.

Fast forward to the last weekend of August, I received a call at 3 am from my daughter. She said for the last 24 hours she has had very severe anxiety and could not sleep at all. She said it started in the middle of the night before so she had not slept in almost 2 days. Things were getting really bad and we had to fly her home. She proceeded to be unable to sleep as well as unable to study. She said she was having trouble concentrating on even simple usually easy tasks. She was completely non functional as a medical student and after a few days took a short term leave from school.

Before we even flew her home she had seen a psychiatrist who immediately put her on buspirone and gave her something to help her sleep. She was able to get small blocks of sleep at least but the anxiety was unchanged. She was able to eat but not eating very well. My normally super independent grown daughter was unable to make any decision and she was also frequently coming in my room at night and sleeping on the floor as if she were a child. She was a completely different person and we felt it had to be a PANDAS type situation.

Fortunately a lot has changed in 13 years and we were able to get her in with an autoimmune neurology specialist. She typically saw pediatric patients but agreed to see my daughter due to her past history and her current situation. We did extensive blood work. This time the strep was negative. She had a positive monospot test (no recent illnesses) but her Epstein Barr numbers came back negative. She tested positive for both IgG and IgM antibodies for micoplasma (again no recollection of feeling poorly). She was given a course of antibiotics. We weren’t seeing any changes for the better. The buspirone was not seeming to help her anxiety/OCD at all. She said the only difference was she was not experiencing the physical symptoms she was the first week or so like the racing heart rate.

The difficult part of this happening to your grown child is that they get to make their medical decisions. She was convinced that this was not autoimmune related and was annoyed I was asking the doctor about the vaccine. She kept blaming herself for everything. It was very hard to watch my typically positive energetic confident daughter turn into a self doubting mess.  The doctor wanted to put her on a 5 week course of steroids but she was pushing back saying it would make her gain weight. She was not getting better and started getting pretty depressed. About 8 weeks into this (and 9 pounds lighter) with no improvement she made the difficult decision to take an extended leave from school and she agreed to start the steroid.

At the same time, her psychiatrist put her on a low dose antidepressant.  Literally a day after starting the steroid I noticed some changes in her mood and she seemed to be doing a little better. She was sleeping better too. She still was definitely having struggles but there was a definite improvement. Some time during about the third week of the steroid she became much better…almost to baseline. It has now been almost another 3 weeks and I feel her demeanor is mostly back to her normal happy self. She is eating well and has put back on a few needed pounds).

This was, however,  a big blow to her confidence as a medical student. She still believes it might have just been her being stressed but her dad and I know better. She will continue with counseling that we started to help her get her confidence back so she can hopefully return to school as the same caliber student they admitted.  We still do not know for sure what caused this to happen after so  long. My guess is that it was either the micoplasma or the COVID vaccine or perhaps both. Something turned her monospot positive too but it was not mono.

We will be seeing her doctor in another couple of weeks and hopefully get blood work done again. I can tell you one thing is for sure. As they say…”out of abundance of caution” she will not be getting any COVID boosters. I just wanted to reiterate that I’m not antivax. I think the COVID vaccine has saved many lives. I just think that there is a possibility that it could play some role in autoimmunity. We just don’t know the answer yet. Until then everyone has to do that they think is best for their own situation. I just wanted to add my daughter’s story as just another case history. 

[FraggleRed]

Thank you for sharing your story. 🙏🏻

[bobh]

I am also very appreciative of you sharing this.

It is so much harder to pin the issue on the vaccine when there is a couple of months between the shot and the sudden onset.  I take it that it was the first shot in early June, and then the 2nd shot 3 or so weeks later, and then the flare was late August.  They typically don't follow issues after 6 weeks, which is a problem because then anything that happens after 6 weeks is immediately dismissed (which is very wrong, in my opinion).

Have you considered reporting the event to the VAERS data base?  Anyone can report.  There is also a survey for P/P patients and reactions to the Covid-19 vaccine being run by the International Pans Registry (IPR).  My guess is that she would have to sign up herself to do it.  I don't know if there is anything in the survey criteria that would exclude your daughter, but it is very important (from a science point of view) for this kind of story to get included in such a study, and at VAERS (even though they will tend to discount on account of the timing).

[luckyone]

Thanks for your response. My thought on the time between the vaccine and the onset is that antibodies build over time.  Her onset possibly occurred when antibodies were at their highest. She did also test positive for micoplasma so that could be a factor. I sure wish we knew for sure. I’ll check on reporting it. Thank you for the info on that!

[luckyone]

I wanted to add that I was listening to the Dr. Robert Malone podcast regarding the vaccine. At about 1 hour 39 minutes he talks about the spike proteins crossing the blood brain barrier which can cause inflammation and other problems. It’s interesting since this is what the antibodies do in PANDAS…cross the BBB and cause inflammation. I can’t help but think there is a similarity in the two. I guess in time maybe we will know. 

[MaryAW]

My 18 y.o. daughter was slightly flaring from mold exposure and then had to get the Covid booster. She is flaring VERY badly now. It started about 2 days after she received the booster. It has been almost 3 weeks now. We are pretty sure it is mast cell activation and are treating her with H1 and H2 blockers (Xyzal and Pepcid) and D-HIST Jr. Also, Histamine Block before meals. She is VERY slowly improving. Good info about MCAS: https://hoffmancentre.com/12-tips-living-mast-cell-activation-syndrome/  and from the same site:  https://hoffmancentre.com/treatments/mcas/

She did pretty well after the first two shots, just a mild flare for a few days. I'm thinking things were bad this time because she had recently been exposed to mold, so her system was ramped up already. 

We are all tripled vaxxed in our house, but I disagree with forcing people to get the shot to attend school, work, etc. People don't understand what PANS/PANDAS and MCAS people go through.

[Atex]

Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks.

For me, when I got my Covid booster in November 2021, an old lumbar spine L4 nerve compression issue that I had (and had not acted up in the previous 8 months) flared within about the same timeframe (8hours) of receiving the booster.

Not saying not to get the vaccines, but there is definitely an inflammation thing going on.

[MaryAW]

@Atex "Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks."

How long did your daughter's flare last? We are in our 4th week here. Did anything (supplements, meds) help calm her down? Any help is appreciated.

 

Edited April 13, 2022 by MaryAW
Tagged Atex

[bws1565]

I fail to understand why people are allowing themselves to be bullied into taking this thing!  (sorry...)  My entire family had Covid; I myself had it twice (once during a pregnancy) and fared well.  There is really nothing to worry about.

For people who already took the Covid Vax and are not doing OK, dandelion supplements really help calm the inflammation.  Ivermectin daily also helps for calming any reactions to spike protein exposure.

[luckyone]

On 5/9/2022 at 11:04 PM, bws1565 said:

I fail to understand why people are allowing themselves to be bullied into taking this thing!  (sorry...)  My entire family had Covid; I myself had it twice (once during a pregnancy) and fared well.  There is really nothing to worry about.

For people who already took the Covid Vax and are not doing OK, dandelion supplements really help calm the inflammation.  Ivermectin daily also helps for calming any reactions to spike protein exposure.

It's not always that easy. In my daughter's case she was told she wouldn't get to participate in certain things in medical school, especially hands on experience type things, if she did not get the vax. I agree that there was "bullying" going on. But to say she allowed it is not very fair. She worked very hard to get into medical school and was not wanting to start out at a disadvantage. It is ridiculously competitive as it is. We advised her not to get it but as an adult it was her decision. It had been 13 years since she had been affected by PANDAS so I think she thought it wouldn't happen. She didn't feel like she had a choice.

[Atex]

On 4/12/2022 at 9:46 PM, MaryAW said:

@Atex "Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks."

How long did your daughter's flare last? We are in our 4th week here. Did anything (supplements, meds) help calm her down? Any help is appreciated.

 

Sorry for not seeing this sooner.  My daughter's TS flare had lasted around 6 weeks.  It prompted us to become more proactive about TS (visited naturopath, did research here, had a useless visit with a neurologist).  What worked really well for her was a 1.5 cups of Dr. Teals Aches and Pains bath salts in a bath every other night.  I kid you not, she went from vocal tics and head shakes 15 times a minute down to 3 a day after like the 2nd bath.  This is lower than pre-shot frequency.   We also got her on probiotic and enzymes to fix some GI issues (long term loose stools) based on recommendations from the naturopath, and it has definitely worked but i cant tell if that also improved the tics because the baths were already working at that point.  Regardless, we have been in a good place for at least 4 months now and don't want to change anything.

 

[bws1565]

Sorry Luckyone. 

I agree with you that ability to participate in normal activities should not be hinged on your personal medical decisions; and also our adult children get to make their own choices whether we agree with them or not, and they get the natural consequences as well.

Just to share, I have been here for a very very long time going through Pandas and Lyme etc.  We FINALLY hit on our proper diagnosis of functional B12 deficiency probably due to a genetic factor of Transcobalomin 2 deficiency.  It is insane that "I" had to figure this out through my own research and can't even get proper medical documentation, never mind treatment, for this "known by the medical community" type of problem.  

And yes, my daughter's issues started with a vaccine as well.  Mercury, (removed from most vaccines in 2000) probably caused her primary deficiency and she has not caught up since. (She is 23).  We finally are treating her properly.   READ Could it be B!2?  By Sally Pochalak

[MaryAW]

On 6/13/2022 at 1:08 PM, bws1565 said:

Sorry Luckyone. 

I agree with you that ability to participate in normal activities should not be hinged on your personal medical decisions; and also our adult children get to make their own choices whether we agree with them or not, and they get the natural consequences as well.

Just to share, I have been here for a very very long time going through Pandas and Lyme etc.  We FINALLY hit on our proper diagnosis of functional B12 deficiency probably due to a genetic factor of Transcobalomin 2 deficiency.  It is insane that "I" had to figure this out through my own research and can't even get proper medical documentation, never mind treatment, for this "known by the medical community" type of problem.  

And yes, my daughter's issues started with a vaccine as well.  Mercury, (removed from most vaccines in 2000) probably caused her primary deficiency and she has not caught up since. (She is 23).  We finally are treating her properly.   READ Could it be B!2?  By Sally Pochalak

I just got the Could it be B!2?  By Sally Pochalak - very interesting, and I definitely think it is part of my DD's issues right now. What form of B12 are you using? Are you doing IV or injections, or just supplements. Our ND gave us  hydroxocobalamin, but we had been using methylcobalamin. She is also doing IV Myer's cocktail.

BTW - she had to get the booster for work, mandatory! Awful. 

[bws1565]

So sorry I did not see this post until now!

So we were looking into injections which my doctor said that the medical center would not have the correct one..... So no use.

I was intrigued by mention in the book about transdermal patches.  I did some research and came up with, what seems to me, the best one.  The company is Nutripatch.  The product is B12 complex.  It has 1000mcg of methylb12, delivered transdermally to  bypass all the digestive issues.

We saw a tremendous improvement in the first few days!