Hello and welcome to the most boring blog post title I’ve ever written. Sorry, but I thought I’d reach out and try to crowdsource (after getting permission from my kiddo, Hailey.) You may remember that they were in the hospital for quite a while this summer with meningitis. The drs never figured out what caused it but their new neurologist believes it could be caused from Sjögren’s Disease, which can sometimes cause recurrent aseptic meningitis and that seems possible because it looks like Hailey has meningitis again. *Big sigh*
Thankfully they recognized it right away and were able to start super strong pain meds and hopefully it will be a mild case that can resolve quickly at home rather than at the hospital, but I’m reaching out on the off chance that someone here has had similar recurrent bouts of meningitis and if so, is there anything you did that helped to keep them at bay or resolve them quicker? Hailey is pretty tough but their college classes are all advanced chemistry and calculus and other stem courses that don’t lend themselves to missing a lot of classes, so finding a way to stop this from happening over and over would be a lifesaver.
Related: How do I hire a witch to remove a curse? Because this year has been a lot. Although yesterday I found out I don’t have ear cancer, so maybe things are looking up?
If you have read this far I would like to thank you with this picture of Dorothy Barker, who got a haircut and is feeling very self-conscious about it.
Just when I thought Dorothy couldn’t get cuter?!!
Please tell Dorothy that she looks like a million bucks. Re: Hailey, I have no advice or knowledge, but Kiki and I met both of you at the Nowhere birthday party and we are sending all the good juju and energy into the universe for them.
I purchased what I think are all the necessary accoutrements for spell casting. I have herbs, candles, books, crystals, brooms, feathers, etc. What I need now is the time to study. Once I am proficient, if you have not had your curse removed, I’m all over it. I will even counter curse the (witch) for you. People don’t mess with our Jenny
Have you heard of the link between meningitis and Herpes virus? Just a thought. I knew someone that they had to take a Zovirax daily to suppress it.
Please tell Dorothy Barker thay she looks absolutely gorgeous.
I’m so sorry to hear that Hailey is suffering again. Unfortunately I have no experience with meningitis, so all I have to offer is prayers for the whole situation.
And if you find a witch, can we do like a class action cleansing? I’m down to chip in. 😂
Xo andrea
I wish I could help but I fear that I’m not in the same circumstance…I have recurrent bouts of meningitis but it’s because it’s viral. It lurks in my spinal cord like a bomb waiting to go off if I get overtired. I am so sorry you all keep having to go through this, especially with them trying to fight their way through college.
Wishing you and the luck with magical info. And Dorothy looks fab
Sjögren’s is an interesting little #%@&. I have Sjögren’s with neurological involvement (punch biopsy confirmed small fiber neuropathy) and FINALLY Sjögren’s antibodies showed up (I’m 50), after years of symptoms. I’m on 5 mg of steroids, SCIG, and Rituximab, for Sjögren’s and CNS vasculitis and MG.
If Hailey has any nerve involvement ( numbness, tingling, weakness) it might be good to get a “punch biopsy” on the leg (sounds horrible, but very tolerable). Because Sjögren’s antibodies don’t show up until later in the game sometimes, seeing if there is some nerve stuff going on might help with diagnosis if Sjögren’s. If this looks like Sjögren’s or another autoimmune disease, then maybe they can get treated and the aseptic meningitis will go away.
If you have any questions, please reach out! My kids have autoimmune stuff too and it’s A LOT. ❤️
(Their neurologist said that you can have it for a long time without testing positive so he sent Hailey to get a test that shows early pre-sjögrens and they’re positive for that so he didn’t think the punch biopsy would be necessary. They do have nerve involvement. Sad panda. ~ Jenny)
If it’s slow at work tonight, I’ll see if I can find some literature on aseptic meningitis
I don’t have any experience w any kind of meningitis, but sending love & hugs b’cos I have lots of experience w rough times. It sucks! You are not alone.
Plaquenil is the only thing that stopped by friend with Sjogren’s from having recurring flare-ups. She didn’t get meningitis, but it might be worth looking into whether there has been research on that. I know Plaquenil saved my friend’s life.
XOXOXO !!!
Dorothy looks adorable.
I have done curse removals before, I am sure you can find someone local to you since I am in Nashville and it really works better when in person. But I will do my best from afar.
I’d love to get enough witches gathered to remove whatever curse is upon this entire country right now.
Dorothy looks fabulous!
Tell Hailey I’m so sorry they’re feeling lousy again. I don’t have Sjögren’s or meningitis, but I do have crazy autoimmune stuff that isn’t fully diagnosed yet. One thing that helps anyone’s immune system is getting proper rest, exercise, hydration, reducing stress, (mediation and yoga and other things that chill you out can help,) and very healthy unprocessed natural foods like fruits and vegetables, whole unprocessed grains, and organic foods and naturally fermented foods like sauerkraut and kimchi and other probiotic stuff like yogurt and other things that improve the gut microbial health.
There is a lot of recent research in the traditional medical community that is starting to examine this, but naturopathic doctors often have a lot more knowledge in this area.
Find a health food store and consult with a naturopathic doctor or nutritionist who has experience in this area and has good recommendations, and avoid those selling supplements or treatments out of their office.
Trying to stick to the diet religiously for a year, and then if feeling better gradually add back in items to see how they feel.
It made a huge difference for me after a couple of years, and now I’m feeling a lot better and I can have a cheat item once in a while, but if I go off the diet for too long, I start feeling lousy again.
Sometimes life can put a lot of crap on our plates, and it can feel like a curse was put on you, but just remember, this too shall pass, and that which doesn’t kill us makes us stronger. Sending positive vibes your way!
A billionaire influencer on TikTok hired two witches from Etsy to keep it from raining on her wedding day and it worked 🤷🏼♀️
I’m sorry it’s been such a hard year.
Brain fog is making the details fuzzy but a local guy had something similar and it turned out to be from valley fever, a fungal infection. Diagnosis took a while because it wasn’t a typical VF presentation.
I was listening to a podcast about an app called Rare Guru that is for people to share treatments for rare diseases. Maybe that could be helpful?
Seconding Heather’s recs on autoimmune disease management. Rather than start with heavy meds (if possible), work on calming inflammation through diet, and find a modality that Hailey likes for calming their nervous system. These approaches can take time to feel change; but when you find what does work for their body, it can be lasting; and Hailey won’t need to be tethered to autoimmune meds.
A functional medicine practitioner would be a good resource; but get one who is recommended, who isn’t hawking a bunch of supplements (tho some may be helpful and necessary), and who has deep experience with autoimmune. If Hailey is testing positive for “pre-“, they’re early in the disease process; and it can be turned around.
Man, I feel you on the l, “WTAF, 2025?” bit. My solution tonight is a rare (for me) glass of wine, with an eye toward doing it more often. But I’m not actually sure that’s anything I would recommend to anybody.
Sending all my good vibes to Hailey, and wishing I had more to offer.
My grandmother used to call a witch every time she got “the eyes” (which you get when someone compliments you and you forget to say, “Thanks be to God”). Sadly, I never got the number before she died.
Hi Jenny, I know TX is huge, but try to get her to UTAustin to see Dr. Elan Louis one of the editors of Merritts Neurology, THE neurology textbook for med students.
I would like to thank you with this picture of Dorothy Barker..Thank you and Dorothy Barker for the picture.
Sorry, no help from me, but please know I’m thinking of you both. It’s terrible having to watch your child be ill and you can’t fix it with Tylenol and chicken soup.
If they need to take a semester off, please know that’s not the worst thing to happen.
It is enraging to me that in America you have to pay a pretty good clip of coin to get healthcare, even if one has some kind of insurance. I wish Hailey well for their recovery.
Be kind to animals
Something Something Motivational Something.
There is a member community at Sjögrens.org. You might get more responses about the meningitis there.
Recurrent aseptic meningitis—especially when it’s not caused by bacteria—can be a frustrating and elusive condition. While there’s **no universal “cure”**, treatment and prevention depend heavily on identifying the underlying cause. Here’s a breakdown of what’s known:
—
### 🧠 What Is Recurrent Aseptic Meningitis?
– It’s meningitis **not caused by bacteria**, often viral, autoimmune, or drug-induced.
– The most famous recurring form is **Mollaret’s meningitis**, often linked to **herpes simplex virus type 2 (HSV-2)**.
—
### 🩺 Treatment Approaches
**1. Supportive Care (for viral causes):**
– Rest, hydration, and pain relief (e.g., NSAIDs)
– Most viral cases resolve on their own within 7–10 days
**2. Antiviral Therapy:**
– If HSV-2 is the culprit, **acyclovir or valacyclovir** may reduce recurrence and severity
– Long-term suppressive therapy is sometimes used in frequent relapses
**3. Autoimmune or Drug-Induced Cases:**
– **Corticosteroids** may help if inflammation is autoimmune-related
– Discontinuing the triggering medication can resolve symptoms
**4. Preventive Measures:**
– Identifying and avoiding triggers (e.g., certain medications or stressors)
– In rare cases, **immunomodulatory therapy** may be considered
—
### 🔍 Is There a Cure?
– **Not exactly.** For viral causes like HSV-2, long-term antiviral therapy can **dramatically reduce recurrence**, but doesn’t eliminate the virus.
– For autoimmune or idiopathic cases, managing inflammation and triggers is key.
– Some people experience spontaneous remission over time.
—
The following may be helpful. There was also a trial in France of 300 patients.
https://www.cureus.com/articles/346575-mollarets-meningitis-a-case-report-of-recurrent-aseptic-meningitis#!/
https://www.cureus.com/articles/346575-mollarets-meningitis-a-case-report-of-recurrent-aseptic-meningitis#!/
1) Hailey is a hero. Good on her; 2) I would contribute but I don’t see a link to a GoFundMe. Make sure to notify us when it’s available!
Pubmed is a great resource for finding scientific/medical literature. A quick search of “recurrent aseptic meningitis” produced this list: https://pubmed.ncbi.nlm.nih.gov/?term=recurrent+aseptic+meningitis&filter=datesearch.y_5&size=100
“Mollaret’s meningitis” might be a good term use for further investigation. Its article on Wikipedia (https://en.wikipedia.org/wiki/Mollaret%27s_meningitis) indicates possible causes: herpes simplex, shingles, and maybe a genetic tendency for it to run in families.
Good luck! I wish Hailey a speedy recovery!
Apparently there are witches for hire on Etsy. May they work their magic for you all!
Sorry, no advice, just lots of 💛❣️🧡❣️
Well shit, what a year. I have a contact with an association in that neuro arena. If I find out a good source for info, I’ll advise.
You’ll find everyone will have a different opinion and that can be so frustrating when your kid is in pain.
My advice would be step by step, just as you’re doing, and not throwing everything at the condition at the same time.
Unfortunately it’s a trial and error with meds and/or diet for each person.
One more piece of advice- a comprehensive assessment at a place like Cleveland Clinic or Mayo might be a thought. At their age, having all the specialists in the same room at the same time to advise can really fast forward things – especially with our healthcare systems and the disconnect between care coordinator and the patient.
You’ve probably already thought of this, but I plugged this into ChatGPT and got what looked like helpful info and links. “Is there a way to prevent recurrent bouts of meningitis with Sjögren’s Disease?”
Sending love and all the curse-breaking sparkles
Firstly Dorothy looks gorgeous as always. She’s clearly begging for compliments. Secondly, your poor babe, I feel they have their mommas luck for random health concerns but know they’re tough like momma and will kick it again. But if you do find that witch’s info please pass it along cause ya, screw this year 😘
I am so sorry for Hailey. And tho i regret i have nothing to offer on the illness front, Dorothy Barker is looking great. I gave myself a haircut today and wish i did such a good job.
No direct help, but I recommend searching on Facebook to see if there is a support group for it. I had a really rare cancer (something like 50 women a year in the US get diagnosed with it, epithelioid trophoblastic tumor), and found a group on Facebook, and it was so helpful for knowledge sharing and support.
Oh my goodness…………………..Dorothy is really styling 🙂 Dang Hailey got it again, no help here but glad they got it Sooner than later. Love, me
So sorry you and your family are having such a time if it. I have Sjogrens and the best source of advice I’ve found is an online community on https://www.smartpatients.com/. There’s a mix of fellow sufferers and a former doctor with sjogrens. I’d recommend joining and posting your query on there as I’m sure someone would have some experience of this that might be helpful.
I began having recurring bouts of viral meningitis at about 16. Probably 6 times, before I was 30. Fortunately, after the first 3 times, they stopped doing spinal fluid draws to diagnose it (because, while the meningitis headache is murder, the headache from a bad lumbar puncture makes it seem trivial).
I finally had a really great physician who diagnosed Mollaret’s meningitis, most likely caused by my HSV-2. Eventually, they stopped happening, and my terrible migraines also calmed down (still blind spots, disorientation and bruised-feeling headaches afterwards, but the pain became…muffled, like I was feeling it through cotton wool). The horrible, herpetic, viral villain lurking in my nerve cells, however, continued to plague me well into my 50’s. My only real break came with menopause, and starting hormone replacement therapy at 56. A year in, and only one flare up (caused by extreme stress). I am firmly convinced these are all tied to my hormones. I know the common solution to this issue is antiviral meds, but acyclovir didn’t agree with me, so I couldn’t use it. I wish I had thought to try birth control pills to regulate my hormones, but I guess I’ll never know if that would have worked. Really hope you and Hailey find a solution that works for you.
She’s beautiful . Y’all hang in there.
Adding to what Pangolin said- there is a Small Nerve Fiber Neuropathy group on Facebook. There are many people in that group that have Sjogrens. If you join that group and search for Sjogrens, you can look at old posts.
I saw someone mention that shingles could play a part in the repeated meningitis. I’ve had shingles three times and I’m 36. (They won’t consider giving me the shingles vaccine.) Shingles can definitely be impacted by stress. I imagine Hailey’s had a pretty good bit of that and there are some antivirals out there for shingles, so if it is viral, hopefully there’s something that can help!
I also saw someone else mention HSV. Not sure if it’s the same type/strain, but did Hailey get the vaccine for that that was being pushed a while back? I think I remember it being possible for some people’s immune systems to take the antibodies in a vaccine and going crazy with them.
Good luck! I hope Haily feels better and gets some answers and the rest of 2025 (and beyond!) is better for y’all!
In a case report from Japan, indomethacin was suggested as a potential treatment for acute episodes and prevention of recurrence in recurrent aseptic meningitis. (Google results)
My additional thoughts:
I keep thinking of Dr. David Fajgenbaum finding an off label drug to cure his own disease and he is now looking into other diseases. Maybe he can help with this too?
I’m not convinced it’s Sjorgens. Long covid? Is there a chance she defers the year and gets better first?
I don’t know about meningitis, but Dr Brooke Goldner has had success with healing Sjögren’s with her hyper-nourishing protocol. She’s in TX, but only works online.
Sorry, had to leave halfway through post to look up Sjögren’s Disease. I’m a science geek. Dorothy Barker is lovely.
My friends daughter keep getting meningitis symptoms over and over again. They even thought she may have a cancer. The ENT doctor recommend that she have here tonsills removed. Once that happened she started feeling better and didn’t have another episode
I mean, a simple mirror RTS could very well do the trick. It’s worked for me in the past. And you KNOW the shenanigans we’ve gotten up to. Yet somehow, everything seems to work out.
Sending you super sage vibes. I hate that your family is dealing with so much. Know you have a whole bunch of people who will listen and send virtual hugs anytime.
Oh, Jenny,
I am so sorry for you all. I can’t help with the meningitis, but might be able to help with the curse. Perhaps Seraphina and I could work up something together. I think you have my contact information. If not, look me up in the White Pages on line.
Be careful hiring a witch off Etsy. Some are legit; a lot of them aren’t. I’ll try to see if any of the ones in the on-line covens I frequent are in your area.
Meanwhile, I’m sending you whatever energy and vibes and love I can push over your way.
Ruth
Sending you all some love and better days ahead—keep your whimsical outlook if you can😘❤️it is your superpower!!!
Have you tried CTRL-ATL-DLT?
I’m hoping I don’t sound rude/insensitive but as someone who teaches STEM classes at a university and as a former student of STEM classes and struggled with chronic illness- it may not be a bad idea for Hailey to take this semester (or quarter) off. Withdraw from classes and focus on healing. Being sick absolutely sucks and also as my grandmother always said (it doesn’t translate as well from Japanese to English) but our health is the only thing we have. So my advice is take the semester (or quarter) off- it may seem like the end of the world for a moment (it always does for students, since that is their whole life) AND making sure you’re healthy enough to focus on your studies is SUPER important.
Good luck and take care! Sending your family healing thoughts!
Oh no! So sorry they, and you are going through this again. Praying it can be controlled for them. It sounds like the new doctor is providing some help. My adult daughter developed CRPS as a teen, and it was not recognized as such until she had a severe flare following ankle surgery. She is able to more or less control her pain level with Mary Jane (daily), and Ketamine infusions, (not covered by insurance) every 3 to 6 months. This is something she has had to “learn to live with.” The right pain specialist made all the difference for her.
No help on the meningitis front but please let them know that they are being sent plenty of light and love, to help get them get this bout quickly. ( and mostly painlessly) Good for them for heavy Stem courses but wish it wasn’t quite so heavy at this time- if that makes sense. Y’all’ve got this( see that Tom Green County coming out):))
P.S. please let Dorothy know that she is ravishing and the bandana makes her look at LEAST 5 years younger- and glad she is ok too..
P.P.S YAY FOR ECZEMA AND NO EAR CANCER!!! GO TEAM JENNY (& FAM)
I’ve got nothing for the meningitis (but super duper hoping someone else does so Hailey can kick it’s ass for good!!), but Dorothy is killing me with her cuteness!!!!! FLUFFY BABY!!!
I’m so sorry. Poor poor Hailey and poor you and your hubby! Nothing worse than having a sick child (no matter the age). However I am glad it wasn’t cancer and “only” eczema. Weird that they couldn’t figure it out for a while. Big big hugs
So sorry to hear this. Feel free to e-mail me at cmcentire@mgh.harvard.edu – I run a meningitis clinic at Harvard/MGH and would be happy to see her or at least talk things over!
My son is a neurologist at MGH in Boston. He has some thoughts, and asks if there is a way he can contact you directly.
Sorry, seeing I misgendered Hailey! Apologies for that. Feel free to contact me at the e-mail above if they or you would like to talk things over.
Dorthy is perfect as always. I don’t know much about meningitis but I do know you will probably have to advocate for your child with the school. One of my nieces had ms & she misses a ton of school. Every year they try to keep something from her like her grades or not to enroll or pass. She turns in all of her work & does well she just might do it from a hospital or online. Have someone that can advocate for Hailey. She luckily has an aunt that has many degrees from the school & is a diagnostician for a school district. It’s really sad that universities don’t want to do what they are legally suppose to do. Hopefully a new time will be coming & everything looking up for everyone.
i have no direct experience with any tyoe of meningitis, nor am i a medical professional –
but, as a long-time practicing witch, i will get on that spell for banishment and healing for you and them forthwith.
Have they considered IVIG treatments? It can calm some pain and other neuro aspects of Sjogren’s. I’m wondering since it calms inflammation like that, if it would be helpful to modulate her symptoms? We found out that it helped with Sjogren’s (as well as POTS/dysautonomia ) when treating my kid for an immune compromising condition
(Last time we saw their neurologist he said that there was some sort of IV medication that were going to look at once they got all of the test back, but I can’t remember exactly what it was. ~ Jenny)
much like reputable dog breeders don’t advertise to sell puppies already born,
real witches do not advertise to cast spells for money.
please do not go this route 🙂
All I know about aseptic meningitis is that it a) SUCKS for people who have it and b) can happen with IVIG treatment, and when that’s a known issue they can premedicate with steroids and antihistamines before giving IVIG, but without a known trigger that doesn’t do much good (as you well know being constantly hopped up on pred isn’t great, and most antihistamines aren’t conducive to learning and retaining information, so absent a knowm trigger that’s useless).
IANAD but my best assvice would be for Hailey to track as much information about their health and personal care routines as possible and look for a pattern or common denominator with the attacks.
Ugh that is so tough!
I don’t have experience with meningitis, but I do have extensive experience with chronic pain. There are great treatments that focus on supporting those of us with sensitive nervous systems. These include relaxation techniques, nervous system target physical therapy, and in some cases (like mine) non-opiod medications. There is a program called “empowered relief” through Stanford that trains practitioners. They could look for one near their campus or look for a specific pain program that is informed by modern science.
I wish both of you the best with your health 💜
I have a Ph.D in clinical nutrition and would suggest you take your daughter to a functional medicine doctor. She would be able to find the source of the problem and check nutrient levels, particularly vitamin D which is critical to the immune system. Love You Jenny! Laurie Amato
Dorothy Barker is simply beautiful with her new ‘do!!!! Thanks for the picture and sending good juju to Hailey and you!!! Also thanks for being here and posting!!
The best way to test for Sjögren’s is a salivary gland biopsy. They numb the area and take a tissue sample. The medication for Sjogren’s wears off quickly. It has to be be taken several times a day with some nasty side effects. I’ve had this biopsy done if you have any questions. According to a journal article this could be cause by enterovirus. So did Hailey start with any stomach/GI symptoms?
This will probably give you an ick. You’re a famous person. Maybe your people can contact Venus Williams’ people and see if she has any advice. She’s probably the most famous person with it, and has access to the best medical advice.
It’s a perk, I know it doesn’t feel like it, of fame.🌟
Dear Dorothy Parker, Your haircut is ravishing! You look so beautiful. Smile and be proud!
my youngest son (now 33) developed mixed connection tissue disease at 5 years old. Sjogren’s Syndrome was one of the varied autoimmune disease in his diagnosis. His specialist at Riley’s Childrens hospital in Indianapolis treated him for 18 months with steroids. She told us his disease was caused by thermisol the preservative in his MMR shots, and he should never have anymore innoculations nor shouild his two brothers.
He has had no further flares or diagnosis since then. Not sure this helps since its been so many years ago and probably there are other stronger better treatments but its all I got. Praying for you and Hailey.
I have a shaman in Peru (not joking!), that would be happy to give her a blessing if you want to contact him…
So sorry they are not well. My son had a round of the aseptic meningitis 2 weeks into his freshman year at college. It was rough going back but he managed with the support of wonderful people in the Student Life dept. on campus. With every migraine, he still worries it’s a CSF leak but it’s been a decade since reoccurring.
Reoccurrences might be linked to Ehlers Danlos and perhaps it’s what anonymous #73 is also referring to in her son’s early diagnoses of mixed connection tissue disease. Maybe consider genetic testing to find out a root cause.
Stay strong, Hailey and you are in my prayers.
Have the doctors already tested for rheumatoid arthritis or lupus? My best friend with lupus has meningitis flareups that land her in the hospital for a week or two at a time. Once admitted, she receives steroids and pain management until it’s under control.
(Yep. Negative for both. ~ Jenny)
Though I don’t know anything to help Hailey I do hope you find something to help them quickly. I’m so glad you don’t have ear cancer and I’m very angry at the first “healcare professional” to scare you and give you a hasty diagnosis. I did read your post all the way to the end as I always do, but I have to admit I was picking my nose the whole time. xoxo
I am so sorry Hailey is going through this! I have zero medical advice. But I do work in higher ed and there should be a path for Hailey to take a leave of absence or withdraw from the semester. Yes they would be “behind” but it eliminates the stress of being ill and trying to go to class, especially classes with labs. Sometimes it’s the best course of action to save your GPA and sanity. Their admission would remain in place and Hailey should be able to register for spring semester courses if they are feeling better. Start by contacting an academic advisor and/or the Registrar’s Office.
Her EX-MIL accused her of “stealing my son AND his sweetness” with the “devil magic in her hoo-ha.” Maybe my friend could help with the spell in some way!
Jokes aside, I’m so sorry Hailey is sick, and I hope you and they get some answers asap.
I’m an east coast gal so my second thought (the first, of course, was to send Hailey all the best vibes) was – have the doctors looked into tick-borne illnesses? Lyme is a tricksy little demon and worth ruling out.
I’m here to compliment you on your transition to correct pronouns for Hailey. I have a they/them adult child and struggle with not using the word daughter, so kudos for using the word kiddo – I needed that!
We have to take ALL the small wins when we live in a smoldering dumpster fire 💜
(I still slip up occasionally, but so does Hailey. Yay for being human. 🙂 Love to you and yours! ~ Jenny)
Maybe not helpful, but weren’t you guys in the gulf lately? Like in Galveston? I wonder if something in the water caused this.
Dorothy Barker looks fabulous. My Lily-pups sends her sniffs as she also just received a puppy cut. And, lots of love to Hailey. Hopefully this round heals quickly at home. 💕
I’m sending out my love to you and your family. Muchos besos Y abrazos para todos including Dorothy Barker!
Someone on the Bloggess Fans group posted and tagged you by your wallet name but I know you don’t check Facebook much if at all. It was someone with experience with viral menengitis – let me know if I need to CopyPaste their post here?
Want to wish you the best. I admire your attitude and love your writing!
So sorry you and your family are having so many medical difficulties. Hailey’s dilemma is quite distressing and I hope they find a treatment regimen that offers long-term relief. FWIW, I also have Sjögrens and sarcoidosis and neuroendocrine pancreatic cancer and a bunch of other stuff. Seriously, the least problematic thing is the cancer. I’ll need treatment for the rest of my life (as you’ve mentioned), but it’s a manageable routine. WRT to Sjögren’s the only thing I can add to the discussion is that I took plaquenil for 10 years and all it did was mess up my vision, so the response to that treatment varies widely ( lifesaver for some, damaged eye for others, and probably more differences too). I appreciate your reaching out, because I’ve learned a lot by reading the comments and referrals to some support groups. Wishing you all strength and healing.
P.S. I’m looking forward to your next book! Congrats!
My mom was just in the hospital a couple weeks ago and was so sick, btu they couldn’t figure out what it was. She was diagnosed with meningitis, but all the viral tests came up negative. Eventually they tested for west nile and that turned out to be it. I am not sure it sounds quite the same as Hailey’s situation, since my mom mostly just had a really high fever and not as much pain, but there is no treatment for west nile, your body just has to work through it. So that could maybe explain the recurrence of symptoms? The doctor said it could take months to get back to normal. Anyway, just thought I would mention it in case they hadn’t tested for that yet. Sending all the good thoughts I can spare.
Dorthy is beautiful, tell them we humans are just pretending we know everything. I know dogs help.
signed Pips mom
I have sjogrens because obviously I do but never had any test positive. Cavities the driest everything. Generally I recommend Dentiva to avoid cavities and Xiidra and Revaree just FYI. I also have completely seronegative RA diagnosed only once I had erosions showed up on xray and for that I’m plaquenil, maybe I knew that helped with sjogrens? I know it is impacted so much more than eyes mouth etc though, we need more info. So sorry for them! I think Lysine also helps me. I got shingles when I was on Humira but after years and I wonder if it was really Humira. I have had issues with viruses for years. Only more recently on Lysine. All the best luck and wishes and thinking of you both!
My mother had this. I can’t stress the importance of true rest, we’ve been hardwired to get back at it when we start to feel better, but aseptic encephalitis will recur if the body is at all stressed. This means bed rest in a dark room with very little activity for weeks or even months. I can imagine that it will be very difficult for them, but I promise that it is truly necessary.
I had aseptic meningitis a couple times triggered by IVIG infusions I was getting for myasthenia Gravis. What helped me was drinking lots of Gatorade and taking prednisone. It was the worst pain I’ve had, worse than childbirth. I hope Hailey finds relief soon!