7 years old with massive nerves flare

Hello everyone,

Reading this forum for over a year, but this is the first time I'm trying to share my case and maybe find a good advise or analysis.

My girl D is 7 years old. She is diagnosed with Lyme and Bartonella for 14 months, but we all understand the disease was there even 2-3 earlier. She's diagnosed and went thro 12 months of ABX and 3 Ivig treatments, none of them have improved her but kept her on a gentle status que. Her only symptom was motor tics, and very light vocal tics. And we thought we're handling the situation.

In the last few weeks sh'es under a nerve attack. Started with serious motor tics, full body, then she was hurt with a loss of knee reflex, and as of few hours ago she developed a super loud - somewhat chilling - scream tic.

We're both with an immunologist and in the last couple of weeks a neurologist who believes she has a neurological lyme where only parenteral ABX can do the work. However, I'm not sure my kid would agree to do an MRI, which is probably needed.

My Qs:
1) do you have a familiar case of tics only onset and a lyme that was attacking the nerves system only?
2) did you have any success in getting your kid to do an MRI? And if yes, how so?
3) did you try parenteral ABX that did much better than oral ones?

Super appreciative for any help. We're in a tough condition as a family.

Thank you!

Thanks for the reply!

We are diagnosed with PANS (Lyme was the cause so not Pandas). We are considering going herbal, but we're in a critical moment where the infection is winning and adding symptoms every couple of days. They are severe. We have an LLMD but his background is immunology and he's very clinical, not integrative. I would more than welcome an addition of a herbal expert, but at this point of time it seems like we actually need neurologists that understand Lyme. We've found one a few weeks ago, but trying to find shared experience with folks here to know what next steps should be.

Again, thanks for the prompt reply.

Thanks for sharing.

There's a Pediatric LLMD - Dr J who is experienced with Lyme/Bart/PANS, but I don't know if he's currently taking patients. He may be retiring soon.
He is in Conneticut.

Here's his website - you probably have heard of him.



/sites.google.com/site/drjoneskids/home

For bartonella...usually Rifampin is needed for Bartonella - unless one of the fluoroquinolones is used (Cipro or Levaquin) BUT they come with Blsck Box warning - and don't know if LLMD's prescribe that class to Peds patients. They are sometimes used as a last resort only because of the serious risks. Personally, I wouldn't take any of the Fluoro's.

So she doesn't have a good detox regimen going?

I'd like to suggest that you start adding in detox methods - one at a time...and gradually increase so she is doing multiple methods daily:

Is she drinking enough water?

In addition to probiotics, she should be taking a liver support supplement.

Something to remove toxins from her brain would be a good addition:

Nutramedix Pinella - Brain/Nerve Cleanse OR Jernigan's Neuro-Antitox II - CNS/PNS are a couple options.

- A binder to remove toxins from her stomach/gut

Here is a link to a list of detox ideas:

www.tiredoflyme.com/detox-methods

Hi Rhnv,
Welcome to our community! I"m so glad you chose to become an 'official' member here!

Girlie has given you some great information, and I too was wondering what you may have your daughter doing for detoxing.

I would encourage you to look into Buhner's, as he has extended protocols to help specifically with things like Nerve pain and more in his "Healing Lyme" 2nd edition. I know that many that use abx also use Buhner's protocols, although I'm not sure which abx you need to be careful using while using certain herbs - I used herbs only to heal, so I'm not very knowledgeable about the abx side of things.

Hi rhnv14 -

I'm sorry your daughter is struggling like this but so glad you posted. Traveler and Girlie have provided good info.

I also wanted to add that IV (parenteral) abx won't work much differently than oral abx, although different abx are used so that might impact her differently. I think it's critical to add in herbals--whether or not you stick with the abx. Herbals just "round out the corners" of not knowing entirely 100% what we're treating, particularly with Bart.

And also people just react differently to just about everything so it's good to cover our bases a little better with the herbal protocols. Many of us here are taking both.

And strongly encourage developing a multi-pronged detox protocol to cover gut, brain, skin, liver/kidneys, lymphatic system - just as Girlie suggested, very slowly.

Regarding the neuropathy - I know it can be alarming, particularly if her sx are changing rapidly. My Lyme-friendly neurologist suggests that most neuropathy in his Lyme patients is caused by inflammation, so that is definitely something to look into. There are good natural antifungals - turmeric. Also, Japanese Knotweed (although it can be antimicrobial as well, so needs to be taken cautiously).

Also, regarding neuropathy - I'm not entirely sure a neuro specialist would trump a Lyme specialist. The functionalities of the infections are causing the neuro issues, and it's the underlying cause - they underlying infections that need to be treated, not necessarily the neuropathy or the effect. Until you can find a good LLMD to partner with, I think it's find to continue with the neuro but just wanted to suggest that a Lyme specialist will likely be better prepared to gear the tx in the right direction. ESPECIALLY a pediatric Lyme specialist. Let us know if we can help you with any of that.

And please, keep asking questions as things evolve - hopefully we can help get things turned around a bit.

-p

Welcome. I'm sorry to hear your DD is having such a tough time and you as well watching all this. You're getting good advice to check for PAN/PANDAS.

DS only had tics and not the nerve pain you're describing so I'm afraid I don't have any tips for you on that other than you might look into CBD hemp oil to help with the symptoms. His tics more or less has cleared with treatment and lots of detox. DS is just getting started on it for some other symptoms but many kids with epilepsy have benefited (neuro stuff). His LLNP recommended Charlotte's Web (developed for a girl your DD's age w/ epilepsy) and Bluebird Botanicals, 2x a day, 15 drops for a month before determining if it works for the symptoms.