Extreme sensitivity to screens- 1st time post

My son is a 20 year old; diagnosed by LLMD here in CT and has been treated for about 6 months by the LLMD and 9 months overall. He had to take medical leave from college. He tested positive for Bartonella which since has become negative. He has had cat scans, MRI, various neurologist visits, etc. His blood work is excellent. In the treatment time, he has been about the same; never well and he only walks, sleeps, reads, and plays the guitar which he taught himself. It's been rough.
He is on mostly a herbal protocol right now, as the antibiotics were getting too much after several months. he also is on something for migraine (Zonisamide) prescribed by a neurologist.

His most extreme symptom is screen sensitivity. he can never look at a phone, computer or TV without getting an instant headache. he has headaches constantly, and extreme fatigue. I can't find anyone or any research with that extreme light/ screen sensitivity problem. He was an engineering major; of course he can't look at a laptop! Has anyone had this with the conditions described, particularly around the "light". Even the LLMD hasn't had someone who has had this type of sensitivity, to this extreme, for this long. BTW, he's been great. thanks!

Hi Johnny D -

Welcome to the forums.

My son experienced much of what your son is going through.

Back in 2014 he was out of school for his entire 8th grade year. He spent the first 3 months of his antibiotic treatment mostly in the dark. He could barely handle light/sounds or the computer screen for more than a few minutes. Reading was near to impossible. He had difficulty walking, his mood was very unpredictable, any bumps while driving in a moving car would make him feel like he was being stabbed all over.

He never tested positive for bart, lyme or babesia. He was clinically diagnosed.

ABX were really tough on my son, too. The first three months were hell. The next six months were only slightly more tolerable. He returned to school the following year. Unfortunately, he has recently relapsed. Now, we have changed doctors & protocols. I am feeling positive this time around. We are learning as we go along.

Does your son have any of the classic bartonella straie? Similar to red or purple scratches on his body. My son's are around his waist and below his buttocks. Ask him. Does he have raised liver enzymes (ALT/AST) ?Was he only treated for Bartonella? I am thinking stuff is still lurking in his body.

Warmly -

Peppermint Tea

BTW. Kudos to your son teaching himself guitar. My son, now a junior, wants a keyboard for Christmas to let out his feelings.

Thank you all.
Unfortunately glasses or f.lux don't seem to help at all. Not sure why!
His symptoms are not classic. No foot pain or stretch marks. No rage...he is pretty low key.
Biggest issues are headache, extreme fatigue, and screens. Some muscle and joint as well.

And Peppermint, sorry to hear about your son. My son's ALT and AST are in range, actually on the lower side.

For what it's worth, original immunoblot was Igg reactive, 39, 41, 58

Hi JohnyD80,

I know this post is a couple years old but if you happen to see this I am dealing with something very similar to what your son is/was dealing with (I hope he is better). I get really sick under fluorescent and LED lights. I am ok with a phone screen but most laptops/monitors also make me feel awful within minutes. When I exposed to the lights I get chills, muscle twitching, really bad brain fog, headaches, and will feel awful for hours/days after being around them. I have tried everything and seen specialists who can’t figure out what is going on. They think it may be inflammation from Lyme/bartonella. This is by far my worst Lyme symptom and it is awful to live with.

If by chance you do see this is your son better? Did doctors figure out a solution? I am getting a SPECT scan done this week to see if that provides any info. If I find out anything I will post.

Kelly
Unfortunately while symptoms are lessened they are still present and impacting his life. He has left college and has been home for two years now. He's "doctored out" and doesn't really believe in medications, etc. so it makes it more difficult. We bought glasses from theraspecs which helped some people and maybe him a little bit, but he doesn't regularly wear them. He believes "micro" concussions from soccer is impacting him as well, and while we have some backup to that via scanning, no definitive diagnosis.
Please let me know how it works for you and if you find anything. I wish you the best.

It sounds to me like his infection is so massive that it has depleted his ability to adequately produce certain neurotransmitters. This could come from several places, but SAMe may not be methylating enough to make melatonin and if it is, melatonin is being used as an antioxidant instead of regulating our day/night cycle. I would increase foods that contain pterins. Folate is a pterin so eating folate rich foods and very bright, colored foods have high flavin content and those are pterins. Citrus fruit is a good bioflavinoid containing food and so is broccoli and red onions. These foods can give him the building blocks to restart his biological cycles in a more efficient manner.

I usually don't advocated massive doses of melatonin, but this may be one case were very high doses (60mg) are warranted. Talk with a qualified physician about that.

Hi JonnyD80,

Sorry to hear your son is still dealing with this. I feel for him because I know how awful it is, it truly sucks. I too tried the theraspecs but they didn’t help at all. The SPECT scan I did came back abnormal (which I was expecting). It shows I have multiple areas that have low blood flow which I think is pretty standard for Lyme illness. The neurologist looking at the scan said that my light sensitivity makes sense given the areas of my brain that are showing issues. Looking at the scan, he also suggested I may have issues from a fall I had while skiing which was years ago. So no definitive answers but I am now going to work at improving my brain health to see if that helps. If I discover anything that makes my light sensitivity better I will definitely let you know.

One last thing....have you heard of Irlen syndrome? It was mentioned to me when I had the scan because having severe light sensitivity is one of the symptoms. Apparently if you have it, there are certain light frequencies that your brain cannot process correctly and that is why only certain lights are a problem. And the solution to that issue is finding the appropriate tint to counteract the effects which qualified optometrist would do. I googled it and it looks like one of those syndromes which the majority of the medical system does not accept but some people seem to swear by the glasses. As I will try anything to makes this go away, I am going to make an appointment to get irlen tested. If it actually seems legit and works I will let you know in case it can help your son.

Kelly