Kleine Levin Syndrome (KLS)

[mommakath]

Have a dear friend with husband diagnosed with KLS about 7 years ago. After speaking with her today, I am wondering if it would be advisable for her to seek of LLMD and invastigate if this would be Lyme related or biotoxin pathway induced (thinking alonf the lines of Shoemaker)? Anyone have any experience with KLS and/or know if it is frequently misdiagnosed and is really lyme? Just curious......trying to help her as it is devastating illness. Very rare and very few "experts" to help navigate it.

[tpotter]

I haven't heard of this before, so I googled it. Got this from Wikepedia:

 

Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. In males, instances of uninhibited hypersexuality during episodes have also been reported.

 

Interestingly, DS has had each of these symptoms...hypersensitivity to noise and light would make him rage. At times I had documented that he couldn't stop eating....he was ravenous for hours, and just kept eating, never seeming to fill up. When he first got sick at 8 years old, he definitely had the hypersexuality, too, and this was quite scary. We thought it was seizure related, and sure enough, he ended up having fronto-temporal lobe seizures, which we all thought was causing each of these symptoms.

 

Now, here's the best part. Most of these symptoms are either completely gone or well under control...by using seizure meds, and treating for Lyme, Bartonella, Babesia, Erlichiosis, and PANDAS (abx, IVIG, PEX, etc.) When we took him off the seizure meds for a followup eeg about 5 years ago (before knowing that he even had PANDAS/LYME), the unremitting hunger returned.) We haven't pulled him off since, but even seizures can be caused by Lyme and co-infections.

 

So, my answer is...yes, I definitely think it can be caused by lyme and seizures (unless the seizures are also caused by lyme.)

 

How are they treating her husband? You are welcome to give her my info, and if she wants to PM me, I will be happy to discuss it with her.

[EAMom]

Have a dear friend with husband diagnosed with KLS about 7 years ago. After speaking with her today, I am wondering if it would be advisable for her to seek of LLMD and invastigate if this would be Lyme related or biotoxin pathway induced (thinking alonf the lines of Shoemaker)? Anyone have any experience with KLS and/or know if it is frequently misdiagnosed and is really lyme? Just curious......trying to help her as it is devastating illness. Very rare and very few "experts" to help navigate it.

 

yikes, it also sounds a bit PANDAS-like

 

infection or stress triggered

About 90% of KLS patients associate an event with their first KLS episode. This event is most often a type of infection or cold, but may also be associated with stress, sleep deprivation, alcohol or marijuana use, physical exertion, traveling, or head trauma.

they may outgrow it (to a certain extent)

In many cases, the disorder disappears as mysteriously as it appears; often when patients reach their twenties. Of the patients that have been studied, more than 90% will outgrow KLS symptoms and even those who have some degree of it left after ten

[mommakath]

Thanks ladies......I had read the infection induce trigger and actually found some posts on the pandas forum about crossover between the two. I am meeting with her today and my gut has been to tell her to rule out "infection induced pans" and lyme. Regardless of what it really is, I think she should have him try the treatments for each. So, I will send her to LLMD and PANS doc who also happens to be functional medicine as well. So sad to hear how it has affected their lives. Grateful for the input!!