Intermittently Relapsing Facial Nerve Palsy

It's been ten years since my son first showed clear signs of facial nerve palsy on the left side. Every other Lyme symptom that I'm aware of that he's ever exhibited has been long gone. This one symptom returns even now. I read that facial nerve palsy is more common in pediatric Lyme, it comes back more often, and it can take longer to resolve. One theory is that the kids are more likely to get tick bites on their heads and necks because they are shorter and lower to the ground. But ten years is a long time.

Has anybody else who experienced facial nerve palsy ever had a problem of it remaining unresolved after such a long time?

From the time my son was six to up until he was about 11 years old, his only Lyme treatment was LDI. It controlled symptoms but quinolinic acid was always elevated in urine organic acid testing. And chronic anemia of inflammation showed up very mildly in testing, with mildly elevated ferritin along with slightly low RBC count. So it seems whatever parts of his immune system responded to LDI, portions of the innate immune system knew he was still infected.

In 2020 I worked with a new doctor to wean my son off LDI and onto the modified Cowden protocol (Samento, Banderol, Cumanda and BurBurPinella). This resolved the elevated quinolinic acid and the chronic anemia of inflammation. And as a bonus, it killed two types of gut protozoal parasites, and he had a huge growth spurt all of a sudden.

about 4 1/2 months into modified Cowden, I stopped increasing doses of all herbs and removed Cumanda per the doctor. At this time the herxing was over and my son's condition was stable. At about nine months into modified Cowden he had his last borrelia LDI dose. The dose strength kept on being increased until it got up to 5c, and he no longer responded with any change at all. His doctor said nobody in his experience ever responded to a dose higher than 6c if they didn't respond to a 6c dose. So we stopped the LDI for Lyme. The last borrelia LDI dose that had improved him was in May of 2021. Then in October the facial nerve palsy started to come back.

From October 2021 until now, each time the facial nerve palsy has come back, it has proved helpful to increase Banderol by just one drop and no more. The last dose increase of Banderol happened in December of 2023.

This month I started a trial of no Cowden herbs, beginning with Banderol. Samento remained on board at full dose during this week. After a week it was clear that the facial nerve palsy was starting to return. And my son said the left side of his face felt a little numb and that he experienced a little pain on that side. He began to turn his head to one side to look at things or listen to people. He hasn't done that in a long time.

It can't be that the borrelia grew back that much in just one week to provoke his immune system that much all over again. It can only be that the Banderol is having an anti-inflammatory effect.

I know the herbs caused herxing before they became anti-inflammatory; and in fact, increasing doses too much too fast made facial nerve palsy worse, too.

As usual I wonder if I'm really doing the right thing even though the worst present day symptoms are managed, and the most severe symptoms of the past are long gone.

What I wonder is if the herbs could be a band-aid for an auto-immune condition. Or whether it is just taking a long time for that cranial nerve to heal. Maybe the facial nerves just need to be coddled for three years (without the doctor urging me to wean from herbs) so that it has a chance to fully and completely heal. I think chronically damaged tissue in and of itself becomes auto-inflammatory. Does that sound right? Isn't inflammation part of the healing cascade, but in chronic inflammation, it gets stuck so that the inflammation itself continues to irritate and tear down the tissue?

I know there are no definitive answers, but this facial nerve palsy sure seems like it should have healed by now.

Is there any reason to wean from herbs so long as the liver and kidney function tests are looking good?

Thank you Garzie. I may not have been clear enough in my telling. The relapse in the facial nerve palsy started to happen after stopping Banderol for one week. Then it started to improve again immediately upon restarting Banderol at its previous dose. All I really did was to pick up where we had left off one week prior.

Also I noticed you said the facial palsy ‘should have healed by now’ what makes you think that? As there are no guarantees that all symptoms will disappear and even if they do there is no specific given time frame. Many people have symptoms for decades or life long

MichiganLymie said...
Thank you Garzie. I may not have been clear enough in my telling. The relapse in the facial nerve palsy started to happen after stopping Banderol for one week. Then it started to improve again immediately upon restarting Banderol at its previous dose. All I really did was to pick up where we had left off one week prior.

apologies - i must have misread

i dont think you are doing anything wrong as such - its just an extremely difficult illness to navigate and your son is lucky to have such a devoted caring parent.

sometimes when we are so focussed on treatment, putting so much effort in and looking for expected results we can kind of over-state the cause and effect relationship - and we can be sure in our minds that A is causing B response

but over the years i have come to realise that many of the symptoms and effects are coming or going or fluctuating in intensity on their own rhythms for reasons that are unknown - yet can appear to line up with our interventions and give us the impression that there is a causal relationship
in reality even if something appears to line up in time - or seems to do so twice - it can be a random effect
3 times - and the same interval between intervention and effect - similar magnitude - starts to be more compelling

all this to say that its possible the symptom is fluctuating independent of the intervention
i know its often not a welcome finding when so much effort or faith has been put in an treatment already ( otherwise you wouldn't be putting effort into it ) but wanted to share my experience as i believe we have to be committed to dealing with what is - over what we would like to be.
this may or may not be the case in your particular example - but i wanted to share the concept in any case so you can at least consider it

to tray to adjust for this effect - for the last 3+ years i have kept a detailed daily tracker in MS Excel where i track interventions and symptoms - track moving averages, trends, recovery over time etc .
i have been subsequently amazed at how often it has proved invaluable - and how many times, by looking back at the data for past events the data either disproves my latest budding hypothesis - or shows me clues to a new one i had not detected subjectively.

i think such a tool is vital if self treating - ie without the benefit of the accumulated experience a LLMD has from treating 1000's of patients -as its a huge challenge to steer either ones own treatment or that of a loved one, through this extremely complex illness.
if you are not doing so already - i am sure the approach could be adapted to help with your sons treatment decisions.

all the best!

My son has been on Ketotifen for a little over three weeks now. He finally worked up to his full dose a couple of days ago. I really hope it will jam the vicious cycle that's been going on.

I've been doing some light reading about the involvement of mast cells in both Bell's Palsy and demyelination. Bell's Palsy is not the correct label for what he has. What he has is really cranial neuritis. The facial drooping is just the tip of the iceberg. Auditory processing is involved. I don't want hearing loss in his future in addition to everything else. But I looked up Bell's Palsy, anyway, because so little medical literature exists, in comparision, about cranial neuritis or facial nerve palsy in neuroborreliosis).

I feel sorry for the dogs in this study. It was done in 1977. But a mast cell stabilizer, Cromolyn Sodium, prevented Bells Palsy in the dogs. That was interesting to learn.

https://pubmed.ncbi.nlm.nih.gov/869431/

Another paper from 1980 says that the use of Cromolyn Sodium prevents nerve degeneration in Bells Palsy.

https://pubmed.ncbi.nlm.nih.gov/6775163/

This paper says that mast cells directly secrete proteases that break down myelin. Meanwhile, myelin basic protein causes mast cell degranulation.

https://pubmed.ncbi.nlm.nih.gov/2451996/

He remains on his doses of Samento, Banderol and Baicalin. (Banderol has been restored to its previous dose.) It took more than three years to work up to the doses he's on now of Samento and Banderol. The last time I increased a dose was months ago, and by just one drop, and herxing was almost non-existent for the first time since starting him on the herbs. (Herxing had consisted mainly of increased repetitive movement tics, and these caused neck and shoulder pain, and this visible sign was just the tip of the iceberg as well.)

I can't dose herbs more aggressively. Something bizarre happened with the Baicalin a little over two years ago. He had been on 1/3 capsule twice daily for months. I tried increasing it to 2/3 capsule twice daily. He developed sudden onset of dystonia that lasted all day for one day. His head was twisted to his shoulder on one side all day long. Upon decreasing the baicalin dose the dystonia resolved and never returned.

I had no idea baicalin was anti-microbial. I thought it was purely anti-inflammatory. It reduced the repetitive movement tics literally by 50%, literally overnight when I first tried it. Later I read the Johns Hopkins papers that found Chinese Skullcap had anti-microbial effect against babesia, bartonella and borrelia. I had no idea! It was bizarre and frightening.

Meanwhile for three years when I've occasionally tried to increase Samento by even just one drop, it has caused the facial nerve palsy to return. Yet the Banderol, increased by one drop, will get the facial nerve palsy into remission. It has consistently worked every time. But it has caused increased repetitive movement tics as a herxing symptom every time, each time just for two or three weeks. Except the last time. It didn't happen the last time.

I've tried to interpret what's been going on. I suspect the sequence has been going like this: the herbs killed the bugs. Then the anti-inflammatory effect took over. Symptoms were in remission. Then cyst forms became active again after a while. And/or biofilms became slowly worn down by herbs, exposing more microbes to the immune system, causing the return of cranial neuritis. But then the Banderol at a dose of just one drop was anti-inflammatory and killed just a small enough amount of the bugs not to become pro-inflammatory--and just a large enough amount of the bugs to keep them from becoming pro-inflammatory again.

I've struggled to interpret the baicalin dose increase effect. It is apparently not only anti-microbial and anti-biofilm, but also a synergist with other herbs. It couldn't have caused what it did only by ripping away too much biofilm too quickly. Otherwise a dose decrease would not have caused a return to baseline so rapidly. It couldn't have killed that many borrelia that quickly, for the same reason. The antigens from the dead bacteria would have remained exposed to the immune system for days or weeks afterwards, even after decreasing the dose.

Without mast cell involvement, I don't even know how to explain such bizarre and quick dose responses, because the speed of worsening and improving would be very surprising if a very large amount of dead microbe antigens were to be involved. But if Ketotifen doesn't work, then I think I'll need to pursue a work-up for auto-immune disease. If that's necessary, it won't be so easy, when the pediatric neurology department at the local hospital seemingly has no interest in taking him on as a patient.

That's very encouraging to know. Thank you. He had a lot of facial twitching as part of his herxing, too, while first ramping up on Banderol and Samento. Interesting.

This is just another update for the record in case anybody else struggles with this kind of issue and reads this thread later.

I've been learning to distinguish between actual cranial nerve inflammation versus stiffness of the facial muscles and the fascia (connective tissue between the skin and the muscles). Now that my son will answer my questions and tell me if the left side of his face feels numb, tingly or painful it is very helpful.

These papers I found were helpful. Just basically helpful in giving me a clue about not only cranial nerve involvement but also facial muscle and fascia involvement. Not really incredibly specifically a good fit for my son. Just kind of an education for me to even think about the facial muscles at all and their stiffness, shrinking, adhesions-- and/or scarring or stiffness or adhesions in the facscia (connective tissue).

Ultrasound echomyography of facial muscles in diagnosis and follow-up of facial palsy in children
https://pubmed.ncbi.nlm.nih.gov/27041077/

Ultrasonographic findings of facial muscles in patients with severe facial palsy who showed no improvement for more than 3 months on acute stage
https://pubmed.ncbi.nlm.nih.gov/38168707/

At this point I've so far learned that:

1) When I weaned off Banderol only, but not Samento, facial numbness and pain and mild drooping followed very soon afterwards, taking about a week to show up.

2) When I weaned off both Samento and Banderol, no facial numbness or pain occurred at all. No drooping occurred. He was able to lift the corner of his left mouth to smile quite normally when his smile was spontaneous. But what I observed was that he had a lot more tightness and stiffness on the left side than he did on the right side. There was no tightness and stiffness or asymmetry when he spontaneously laughed or smiled. When the doctor asked him to fake smile during a neurological exam, there was a lot of facial asymmetry due to the tightness and stiffness of the left side compared to the right side.

I did not choose to do this. I had no choice. He had just been hospitalized for severe hyponatremia (low sodium) from psychogenic polydipsia (compulsively and chronically drinking too much water). Layered on top of that he had diarrhea from a recent viral illness. The doctors surmised acute, severe hyponatremia was layered on top of chronic, mild hyponatremia. Sometimes God brings good things out of hardship, and in the aftermath of all of this, I have figured out quite a bit that I didn't know before.

I have surmised that Samento must have been causing something to happen--maybe due to its immune stimulation or its anti-biofilm slow controlled burn at its low dose--whatever it was it must have been causing an intermittent herxing that affected the facial nerve palsy. Then the Banderol--maybe by mopping up the freed up spirochetes that had their biofilm worn away, maybe by its anti-inflammatory effect opposing the immune stimulating effect--I don't know--somehow it was balancing the effect of the Samento. Maybe it was helping the Samento kill the spirochetes faster so that they had less time to stimulate the immune system and cause inflammation with their increased antigen exposure. I'm not sure. Something about it was balancing somehow.

3) Right now I'm finding that all he needs so far is support for the stiffness of the left side. I'm finding that CBD oil is helpful, which goes along with the fascial being rich in endocannabinoid receptors. I've returned to MB12 shots because they've prevented severe relapses in the past, but I haven't seen them affecting the stiffness, and I haven't really seen a change. I'm just being cautious because the MB12 shots have proved neuroprotective for so long. In the past the supplement Astaxanthin has been helpful as well for facial stiffness, so I'm soon going to reintroduce it.

Right now I'm tentatively thinking that his facial nerve palsy is in remission, but he needs continuing support for the legacy of facial muscle atrophy, stiffness, stiffness of the connective tissue fascia and maybe scarring or adhesions. But I'm not throwing away the Samento and Banderol just yet. I'm keeping that stuff in the fridge for the next two years while I watch and monitor things. He's been on them for over three years, so maybe he's ready to be weaned.

A speech therapist had him do facial muscle exercises a few years ago. It might not be a bad idea to return to those.