Teen with PANS for 5 plus years, lingering anxiety, fatigue

[Meilin]

I have been on this forum for a long time, but first time posting. My daughter is now 15, and had her first episode at age 10. At that time she had been sick with influenza, and then came the symptoms- extreme anxiety, unable to concentrate or do school work, lost so much weight she was skin and bones literally, lots of outbursts, OCD symptoms. It was a horrible time. My doctor tested her for strep - which was negative - and at that time said it was all psychological. We ended up in the ER a couple times during the initial flare and an consulted with a pediatric endocrinologist who ran a lot of blood work with everything normal. My gut knew better, and my search began. Took almost a year for me to stumble on PANDAS, and thankfully in the meantime I found a naturopath who worked with her. Through the use of supplements and oils over a two plus year time period I was able to get her functional again, but never the same girl. I did homeschool, online schools, and a blended school environment of minimal classroom time and working from home. The anxiety, fatigue, and brain fog would come and go at various levels. Thankfully she has always been a very bright and gifted child so falling behind usually just meant doing grade level work for her. Somehow she had 8 months when she was 14 of no symptoms, and I thought we had finally beat this disorder. Sadly she caught another flu bug and for the past two years symptoms are again present. The main issues now are fatigue, anxiety, and the "brain fog". She started high school this past fall, a project based school so thankfully they can accommodate her working at home when not well. They are also wonderful in telling her to work at home when there is a lot of sickness at the school as they understand the disorder. I have her back on all of her supplements, and we began working with a cognitive-behavioral therapist for the anxiety and social phobia she has developed through all of this. I haven't seen a huge improvement with the CB therapy. She has never tested positive for strep and my ped who is now on board with the diagnosis but doesn't have much to offer as she too feels it is PANS and her trigger seems to be an illness usually with a fever. We have her on a gf diet and she eats very healthy foods. She was gf even before PANS due to stomach issues. Ped wants her on anxiety meds which now CB therapist is pushing too. I am hesistant to try those. Is anyone else dealing with these lingering issues of debilitating anxiety and fatigue? Getting her to take and swallow pills can be very challenging, and I am concerned with anxiety meds making things worse. Has anyone seem long term improvement with them? I am in WI - have not seen a true PANS doctor yet. I am wondering if anyone else is dealing with similar issues or can relate to this cycle she is caught in. I do a lot of reading on PANDAS/PANS and follow different groups but so often it is younger kids and strep is the culprit. Interesting note is my younger daughter two years ago did have strep and PANDAS symptoms. She was placed on antibiotics right away and symptoms went away and thankfully have never returned.

[bobh]

The only similarity with our story (so far) is that our symptoms also went away (except for some small lingering anxiety) for a time (actually about 2.5years) and then returned with a vengeance after a sickness. But initial severe OCD was at 6, and subsequent flare was at 9, and he is only 13 now.

 

At 9, we did find infectious triggers that, after clearing (or at least, we think we have cleared), he did improve. Though he is much better than he was at 10, he is certainly not 100% ok yet. We were hoping that puberty might help, and so your story is sobering on that possibility.

 

What we happened to find (through an Igenex test) was ehrlichiosis. That is another tick-borne disease (we did take a tick out of him at age 5 and kept it for many months, then threw it away). The other thing that helped us (though only in the long term, with hindsight) is a tonsillectomy.

 

My best guess is that, with her immune system the way it is, something else is still triggering now. It may be impossible to find all triggers, but when we find one with our guy (e.g. an ear ache that seems to turn into an infection) and deal with it, he gets better. The list of possible triggers is so long - don't forget to consider mold and seasonal allergies, as well as infectious agents.

 

Even though her strep shows negative, with all the occult strep (hiding out in biofilm like sinuses, etc), have you ever tried abx for longer than the standard course? Dr. T. once mentioned (on a Radio PANDAS show, I believe) that after treating a child, he noticed that the mother (in her 40's?) had a tic. She tried a course of abx at his direction and her tic went away.

 

So sorry that the long road that looks like you were through, has gotten longer again.

[Eliself]

This reminds me so much of myself. I am 15, first major flare around 10. I can especially empathize with symptoms going away for a while- from 7th-8th grade was great for me with just a little anxiety. I was diagnosed with OCD and anxiety at 11, and PANDAS at 15, so I was on psych meds (citalopram and as needed Ativan) for that whole time to treat what we thought was just psychiatric issues. I think it might have helped a little bit, especially at first, but that might have just been the waxing and waning of PANDAS symptoms. I'm in Minnesota.

Out of curiosity, have you tried the more standard PANDAS treatments like antibiotics or ivig? We're heading to DC to see dr. L in two weeks.

[mama2alex]

Fatigue, anxiety and brain fog are classic symptoms of Lyme Disease (and other tick-borne infections). Many kids with PANDAS/PANS have Lyme and coinfections - they can also cause OCD, rages, ADHD, anorexia, insomnia, etc. Given that you're in Wisconsin, which is endemic for Lyme, I would find a Lyme-literate doctor to test and evaluate her symptoms asap. You can start a thread here asking for a recommendation in your area, or call ILADS and ask them for a name.

[MomWithOCDSon]

My DS had anxiety/OCD diagnosed from age 6; we didn't get a PANDAS diagnosis until age 12. He had been taking a low-dose SSRI since the age of 8 -- with success -- until he hit this major wall at 12 and then the SSRI, ERP, CBT, etc. couldn't touch the anxiety. A long course of antibiotics is what put him back on track, though he continues to take a low-dose SSRI even today (age 20).

 

To Bobh's point, my DS had had upper respiratory issues (allergies, sinusitis, frequent ear infections and colds) most of his life, and we suspect that strep and potentially other bacterium, as well, had managed to hide out in his sinuses via biofilms, etc. Hence, for the first year or so, every time we tried to take him off antibiotics, he would "snap back like a rubber band" within 7-10 days of cessation. So we'd put him back on again, and his behavior would generally improve within 4 or 5 days. That pattern persisted until he'd been on abx for nearly 2 years, at which point we decided he was stable enough that we could begin to wean him off, very slowly. Finally, after about a 6 month weaning period, he was off antibiotics and except for an ear infection here and a sinus infection there, has been off them ever since.

 

Many people will dissuade you against "psych drugs," and if you can achieve a happy, functional person without them, I'm all for that. We're one of the families, meanwhile, that have definitely benefitted from them. Just be aware that 1) all "psych drugs" are NOT created equal, so do specific research, rather than generalizing, and 2) best to start at a very, VERY low dose -- generally speaking, I would say at about 1/2 what a standard psych would prescribe as "typical" for the patient, and titer up very slowly, if warranted. The biggest issue that appears with PANDAS/PANs kids and SSRIs is "activation" caused by a dose that is too high for them.

 

All the best to you!

[LNN]

I think of two things when I hear brain fog and chronic fatigue as dominant symptoms - Lyme (or co-infection such as bartonella, babesia, ehrlichia, mycoplasma) and mold. i think the benefit of seeing a Pans specialist (i.e. not one who focuses solely on strep as a trigger, but one who will explore environmental factors and chronic infections) is that s/he will dig deeper to find the trigger and do various trials of treatments.

 

My DD12 developed anorexia and panic attacks that but us in a critical situation. I have always been reluctant to use SSRIs (tho I don't at all judge those who need them). My reluctance stemmed from wanting to uncover the root issue without SSRIs masking or complicating our fact gathering. My kids' symptoms were manageable without an SSRI - until last summer. When my DD was faced with potential hospitalization, I felt pressure from our pediatrician and our therapist and my husband to use an SSRI - after all, how could I claim to be doing everything possible to help her if I was denying her relief, even if it went against my personal feelings? I couldn't justify letting my reservations take priority over er well-being. Her panic attacks and OCD were crippling. So I relented.

 

I chose Lexapro due to it's long half-life and relative risk profile, given her medical and genetic/family history. I'm not sure the Lexapro did much, except help her sleep at night. We also started two antibiotics and prednisone a few weeks after starting the Lexapro, so I'll never be able to tease out what role the Lexapro played. But I do know there was an immediate and huge turn around within 36 hrs of antibiotics and steroids, so I tend to give much more credit to those.

 

It's been 6 months and her doctor wants to introduce a new medication (diflucan). But both the Lexapro and azithromycin she's on increase the risk of prolonged QT intervals of the heart beat, as does diflucan. So it's too risky to have her on three meds that carry the same risk. We've started weaning off Lexapro and will probably switch to a different antibiotic and then add the diflucan. I can tell you that weaning off even a small dose of Lexapro (5mg) is proving to be difficult. Withdrawal symptoms are rough. So in hindsight, I wish I'd refrained from the Lexapro. But I think it made sense for where we were at back then. Follow your gut is all I can advise - and then don't beat yourself up for whichever decision you make.

[bobh]

...

But I do know there was an immediate and huge turn around within 36 hrs of antibiotics and steroids, so I tend to give much more credit to those.

 

It's been 6 months and her doctor wants to introduce a new medication (diflucan). ...

 

Yes, comparing the 2 week interim and the 36 hours, I would say it is a much much higher chance that the abx and steroids did it.

 

Is your doctor suspecting yeast, and have you ever done nystatin or diflucan previously? They can work differently, but if you are looking to do battle with yeast, we had good results with nystatin, which tends to not absorb into the bloodstream (where meds create their side effects), but rather stays in the digestive tract where it does its work on yeast. So that makes it a very safe med in my view. Herx can be significant, though.

[LNN]

No, we're not looking at yeast. We're looking at Lyme and chronic residual effects from mold illness. I've unfortunately been in this world of chronic infections for a long time, so my kids aren't strangers to nystatin, diflucan, anti-fungal herbs, molybdenum, arginine and the slew of other supplements used to manage fungal issues.

 

My daughter is responding well, but in an unexpected way, to tindamax. Instead of herxing, it seems to just make her feel better - not home-run better, but incrementally better on the days she takes it. She also has a long history of mold illness and inflammation. Our LLMD has seen some Lyme patients respond well to diflucan as part of a lyme protocol. From Stephen Bhuner's site: http://buhnerhealinglyme.com/lyme/diflucan-for-lyme/

 

Dear Stephen,
I was going to try Diflucan for systemic mold symptoms, and in my preparatory research, came across this interesting article A New Approach to Chronic Lyme Disease by Jill Neimark that tells about Dr. Fritz Schardt’s use of Diflucan (fluconazole) to treat chronic, advanced lyme disease. He says that fluconazole inhibits the enzyme cytochrome P450 that our livers use to detoxify chemicals and drugs. He believes that diflucan inhibits the growth and replication of borrelia, which has a primitive P450 defense. It does not necessarily kill it. He also says it penetrates into the cells, nervous system and brain, where borrelia may hide. What are your feelings on using Diflucan for chronic lyme, and for that matter, to treat systemic mold? Do you know of herbal counterparts that might have the same actions—for mold and lyme—yet potentially safer for our livers (or would that counteract the P450 weakening effect)? Much thanks.

 

Stephen’s response:
The excitement about this antifungal is due to one study that I am aware of: Eur J Med Res. 2004 Jul 30;9(7):334-6. Clinical effects of fluconazole in patients with neuroborreliosis. Schardt FW.

Eleven patients with neuro-borreliosis had been treated with 200 mg fluconazole daily for 25 days after an unsuccessful therapy with antibiotics. At the end of treatment eight patients had no borreliosis symptoms and remained free of relapse in a follow-up examination one year later. In the remaining four patients, symptoms were considerably improved. At the end of therapy immune reactivity (IgM+) disappeared in three patients. Since borrelia spp. are almost exclusively localised intracellular, they may depend on certain metabolites of their eucaryotic host cell. Inhibition of P450 and other cytochromes by fluconazole may incapacitate Borrelia upon longterm exposure.

The study is a small one and is difficult to extrapolate from, however it is promising and I would certainly consider the use of fluconazole for lyme. Certainly the use of the pharmaceutical for 25 days (and perhaps 50 as is now being suggested) is worth it with long term chronic lyme that has not responded to antibiotics.

As to herbal counterparts: The exact actions of fluconazole in the treatment of lyme are unknown; there is more involved than simply inhibiting the enzyme cytochrome P450 that our livers use to detoxify chemicals and drugs. There is a specific kind of inhibition of specific aspects of that system. As yet, I have not done any research on those exact pathways and what herbs would do the same thing, so I cannot give an informed answer on it at this point in time.

But diflucan can prolong the QT Interval, as can Lexapro and Azithromycin - and DD is on both. So before we can try diflucan, I want to get her off of Lexapro.

As for herxng when you kill yeast - look into molybdenum, yucca root and arginine. When yeast dies, it throws off Acetaldehyde, which the body then converts into ammonia. A similar conversion takes place when your body detoxifies from drinking alcohol - which is why kids with yeast can act drunk - the same chemical reactions are happening in their bodies - as if they were drunk. Moly, yucca and arginine can all help detoxify ammonia and help with the "herx" symptoms of die-off.

[bobh]

Well thanks for the education, llm. The idea of diflucan for lyme is something I haven't heard (our son never tested positive for lyme, so I am not in any lyme groups except this one).

I wish some others would take up the cause and duplicate that German research you quoted, as it has been well over a decade, and I see from publications in both U.S. and Europe that fluconazole treatment for lyme is not being accepted by the mainstream. "Not enough evidence" they say here https://academic.oup.com/cid/article/43/9/1089/422463/The-Clinical-Assessment-Treatment-and-Prevention and here http://onlinelibrary.wiley.com/doi/10.1111/j.1468-1331.2009.02862.x/full .

 

Have you read this discussion:

http://cid.oxfordjournals.org/content/34/9/1281.short

This is titled "Why Prior Fluconazole Use Is Associated with an Increased Risk of Invasive Mold Infections in Immunosuppressed Hosts: An Alternative Hypothesis". I haven't read through it myself - just thought you might be interested given your child's symptoms and your plan.

[wood0501]

My daughter has had Pans now for 5 years but just now diagnosed. She has been on lexapro 15 mg for 2 years. She was doing pretty good then got sick and had a flare up. I had to take her out of school due to the anxiety. She is currently on antibiotics for 12 weeks. The lexapro has not helped at all now. I have read that maybe the lexapro dosage is too high and causes her symptoms to be worse? Has anyone experienced this? Maybe as the antibiotics helping the lexapro too high and still causes symptoms? Any advise ?

 

thanks!

[Conanjaguar]

@wood0501

I would take a tentative guess that the antibiotics are a factor in it somehow. I have Tourette’s, and I noticed a significant increase in tics while on antibiotics. I know PANS isn’t the same, but their both neurological, right?

I’d suggest giving your daughter a probiotic to restore a healthy gut balance, since antibiotics kill bacteria without discrimination.

[Chemar]

On 1/21/2023 at 6:25 PM, Conanjaguar said:

@wood0501

I would take a tentative guess that the antibiotics are a factor in it somehow. I have Tourette’s, and I noticed a significant increase in tics while on antibiotics. I know PANS isn’t the same, but their both neurological, right?

I’d suggest giving your daughter a probiotic to restore a healthy gut balance, since antibiotics kill bacteria without discrimination.

People with PANS/PANDAS usually need antibiotics due to the infection connection. Plus some are sensitive to certain probiotics as well. Due to the neuropsychiatric, autoimmune and infection issues associated with PANS, there are several factors that make it different from TS, although yes some people with TS may also have PANS and vv.  Not all neurological conditions respond to the same treatments.

[Conanjaguar]

@Chemar

Ah, I see. Thank you for clarifying.