posted
I'm having vision and other neurological symptoms, and when I went grocery shopping last week I ended up with vertigo most of that night. I suspect the exposure to fluorescent lights had something to do with it.
Since these lights are impossible to avoid for those of us who have to go into stores, is there something we can do to minimize their effect? Do sunglasses help? Something else?
Stores aren't the only problem . . . I'm going to have to give up my weekly Scrabble games at the library. The computer monitor and TV aren't all that comfortable to look at either.
Posts: 117 | From Pennsylvania | Registered: Jul 2010
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Brussels
Frequent Contributor (5K+ posts)
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posted
Poor you... The problem is waay too common for lyme sufferers.
It took me literally a decade to feel better, but I have no longer lyme...
I do think that heavy metals have a connection to that: as though these heavy metals attach to neurons and they act like antennas. That is dr. K's explanation (or something in this sense).
The more toxic heavy metals you have, the more the antenna effect. Then add the fact that lyme makes your nervous system bananas, well, electrosmog will not help.
but the good news is that, today, after more than a decade trying to get rid of heavy metals and toxins, I feel MUCH LESS sensitive to electrosmog, neon, etc.
the decline of symptoms is clear to me. I even forget to turn off my mobile phone. Before I felt totally crap with it on for long.
Same as with computer: now I do not freeze, like before, or feel dizzy with it.
I still avoid EMR exposure, rarely carry mobile phones on my body (this is VERY bad, in my case), but now I even forget them off in my hand bag some days.
This would have been IMPOSSIBLE years ago, because I would feel the stuff making me neuro symptoms.
so my advice: avoid the stress (shops, computer, mobile phone) as much as you can.
And concentrate on MANY different heavy metal detox protocols. ONly one protocol will never get rid of a reasonable amount to be rid of EMR sensitivity.
I'm still sensitive, but about 70% less than during lyme.
I do think the times I was herxing, toxic, flaring, with candida on top, these were the times my autonomic nervous system would go crazy and I would be like a walking antenna for EMRs.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Phoiph
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posted
Alisande...
I had the same sensitivity issues to lighting (particularly fluorescent) when I was ill, but now that I am well, I am no longer sensitive.
The flickering in fluorescent lights is known to cause issues with many people, especially those with neuro issues (e.g., autism). For me, I suspect it was neuro-inflammation.
When I worked with kids with visual impariments and autism, some of their visual sensitivities were much improved by using Irlen Lenses (individually prescribed color filters). You can Google it.
Of course, this is just an aide...the best way is to treat your overall condition (in my case, mild hyperbaric was the key).
Posts: 1880 | From Earth | Registered: Jul 2013
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tdtid
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posted
My heart goes out to you since this was a huge factor when I was dealing with lyme and I remember it so well.
For me, it would flare the neuro to the point that I would seizure.
I never really had a fool proof way to avoid the issues, other than avoiding the lights all together and that obviously just isn't always possible.
I did find that sunglasses did help settle it down a TINY bit but no....for me, it just took aggressive treatment until one day those lights just weren't a factor.
I also had trouble with the bluish type lights on cars at night. The kind that glare so much brighter than the others, which had me avoiding even being in the car at night when others were driving.
Lyme causes all sorts of light sensitivities and it DOES get better with treatment, but while you are going through it, it feels like it will never it. It does though and it's so worth the battle.
Hang in there and keep us posted as to how you are doing.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Thanks, everyone. I hadn't thought about EMR exposure or heavy metals. Fortunately, I'm not glued to my cell phone; it resides in my purse full time, and I don't carry that unless I'm out.
I recently became a ham radio operator, and hope that's not going to become an issue.
The symptoms had subsided without treatment earlier in the year, and I was hoping I could go along that way indefinitely--not cured, but not miserable either. But after I was stressed by a different kind of health crisis (now resolved), the symptoms came back and I filled my doxy prescription.
I think I herxed on the doxy, because the symptoms got worse for almost two weeks. Then they began to improve, but got worse again when I came down with a bad cold two weeks ago. The cold is still hanging on, the symptoms are still nasty, and I've had two herpes cold sores under my nose in two weeks. I look enchanting.
I'm thinking my immune system is struggling with the combination of the Lyme and the cold. My LLMD wants me to add Plaquenil, but I'm reluctant--first of all because it's hard on the liver and my liver isn't the sturdiest, and also because I've heard it can cause eye symptoms. I already have enough of those.
Is there a Lyme treatment that targets light sensitivity, etc.? Thanks!
Posts: 117 | From Pennsylvania | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
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- It's the way the lights flicker.
Nystagmus (spasm of the eye) is very common with lyme so the flicker of fluorescents is even more profound.
The neurological impact of lyme, the vestibular involvement, as well as the toxicity can make nystagmus worse with NMDA receptors going haywire.
MAGNESIUM can help calm nystagmus but, really, it's just best to do one can to avoid them.
GINGER can help the vestibular system calm a bit (anytime the inner / middle ear is affected, eyes will be as well).
And ANTIOXIDANTS as in LIVER SUPPORT also key.
MYELIN SHEATH support also key to helping with the nerve fibers' ability to manage such atmosphere.
But rest and avoidance still vital. Do all you can to avoid big box stores. Try to find friends, family, volunteers, delivery services to cover your bases until your nerve fibers are stronger.
Of course, what is mentioned above is all just support. Any infections that are irritating / damaging nerves / tissue or causing inflammation should be directly addressed.
VISORS may be of some help but, really, the flicker of such lights is all around, even if we don't see the actual bulbs.
Phoiph mentions Irlen Lenses and I looked into those & was very impressed with what I read & with some hope but never had the money to arrange a pair.
They may be one option while you attend to the causes involved -- but they would do nothing about the scents in a grocery store or the sounds, all things that add to the sensory overload. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- If you had a broken ankle, it would be much easier to organize a support network. With a broken neuro-vestibular system, though, it's not so easy.
With an infection of other kinds, often help is eager, ready & able. But with invisible, chronic stealth infections those affected are often left in the dark to just get it all together on their own.
Treat yourself as you would if a different body system were "broken" or ill . . . and avoid stressors (as best possible) until such time as the body is stronger. It does no good to push the limits when the nerve fibers are raw, so to speak.
Even for those otherwise healthy who have migraines, many must avoid fluorescent lights. So, the need to not submit your body to the those is not to be dismissed.
I really think many others in the world would feel better without them, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I had to venture out to get groceries yesterday. Wore sunglasses and a visor. (Thanks for the tip!) No vertigo, thank heavens. I think the visor made a difference.
Posts: 117 | From Pennsylvania | Registered: Jul 2010
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Brussels
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posted
When lyme is not there anymore, a lot will improve. At least for me.
No more problems with fluorescent lights (I have one in the kitchen, because I can't have anything else there...).
During lyme, I suffered a lot from EMR sensitivity (including fluorescent lights, but worse was the mobile phone / wifi / computer / home phone), ...
and of several food allergies... It's like the whole body gets so much stress, toxins, fatigue, whatever, all the neuro symptoms, then you just cannot function.
I don't think colds cause that, but a combination of stressors, in my opinion... I do catch colds now, but without lyme, without teeth infections, I feel everything sort of improve. Slowly but surely.
I have less and less EMR sensitivity, and fluorescent lights make me nothing, really. Maybe if I stay the whole day under them, it would have been different though.
Once I saw a whole documentary of EMR sensitive people in Sweden: they receive full disability, move out to isolate places in the middle of nothing, and even have a house WITHOUT any electricity.
They get SO sensitive, that they can't even COOK on an electric stove!
All that radiation problem is cumulative, say the experts. Same happens to any type of harmful radiation: only the accumulation causes problem.
Like cancer from X-rays, or cancer from radio-isotopes, etc.
So avoiding the stuff the more you can, is the only fast solution.
Some people buy those special underwear to protect them against some of the bad EMRs, and they usually say it helps (even if they protect them only partially).
Just keep treating lyme, lowering toxins, heavy metals, eating well, lowering EMR exposure. I hope that, at a certain point, things will improve for you, like it did for me.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Catgirl
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I think there is a heavy metal connection too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Tincup
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Your are welcome to contact me by email. Sorry I don't PM.
TX Lyme Mom
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posted
I'm almost hesitant to post this next link because the therapy associated with it has become very controversial with LLMDs -- and for good reason, too, because so many Lyme patients tend to have an extremely hard time following their protocol -- although there are a few success stories from Lyme patients posted on their website.
OK, with that disclaimer out of the way, here is a link to probably the most detailed information that you will find anywhere about sensitivity to fluorescent lights and to sunlight and also to on-coming headlights when driving at night. (WARNING: It's long, very long, and very detailed.)
Incidentally, this is the protocol which led to our daughter's successful recovery from Lyme following nearly 3 decades of illness since early childhood!
Nevertheless, I do understand how extremely difficult this protocol is for most Lyme patients, and for that reason I'm reluctant to recommend it, except as a very last resort when there are no other options left -- and maybe not even then.
I do recommend the NoIR sunglasses though which are discussed at the link above. These sunglasses are far superior to cheaper versions called blue-ray blockers. Be sure to select the amber shade of NoIRs because those block blue rays, in addition to blocking IR rays. The lightest tint is best for night-time driving against on-coming headlights. Extremely sensitive individuals might need medium and/or darker tints for daytime use.
(PM me if you have questions about the protocol because I do not want to hijack this thread by discussing it here.)
Posts: 4563 | From TX | Registered: Sep 2002
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Keebler
Honored Contributor (25K+ posts)
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- TX Lyme Mom,
If you refer to the Road Back Foundation, there is no need to shy away from mentioning that. It has been very helpful for some - and not (or not at all) for others. It depends upon if the person fits the exact parameters for that particular treatment.
If you refer to the Road Back, so glad to hear that it helped your daughter recovery.
There have been various threads on that in the past.
I looked into that many years ago but did not fit the "requirements" and I do recall the NoIR sunglasses as being very helpful for many on that protocol.
I can also see where the NoIR sunglasses might be of help even for those who do not fit the protocol specifications. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Regarding electromagnetic sensitivity, the best explanation that I've seen for it is found in the writings of and the interviews with Dr. Ritchie Shoemaker. Here's a link.
QUOTED EXCERPT: But over 75% of patients will have a problem with antidiuretic hormone. You’ll see these folks, and they say their headaches are migraines that last a week. Well, that’s not a migraine.
You’ll see them in the cardiologist’s office with a positive tilt table because they’re volume depleted with low ADH because they’re not holding onto free water. They walk around with high levels of osmolality. Their headaches are there from the salty blood.
They’re tired because when they stand up they start feeling weak, woozy, and wobbly, and they’re told they have POTS syndrome if they have pulmonary hypertension and low VIP along with it.
But you’re right. The best symptom of all — one day I had two people tell me that they turned on a light switch with their elbow, and I said, “What in the world would you do that for?”
It was not in any book, and I had read the book and it wasn’t there. And they said, “No. It hurts a lot less when I get the static shock on my elbow compared to my fingers.”
I’m going, “What. You have a bad light switch or something, grounding?” “Oh, no, no. It’s doorknobs, on a car, outdoors, and people and drinking fountains.”
I’m going, “Wait a minute. How in the world does this person have an electromotive force on their skin being discharged to ground.”
And so I took a wild-ass guess and said, “Let’s measure their electrolytes in their sweat,” because we do that with cystic fibrosis.
The highest chloride levels you find there are in cystic fibrosis. But the levels of chloride in these folks with static shocks was even higher! They were batteries on their skin.
It was all because without ADH they lost free water, the blood got saltier, the sweat gland poured out extra salt onto the skin in an effort to bring the osmolality back to normal, and that all worked fine -- until the person tried to open a door.
"Symptoms associated with dysregulation of ADH include dehydration, frequent urination, with urine showing low specific gravity; excessive thirst and sensitivity to static electrical shocks; as well as edema and rapid weight gain due to fluid retention during initial correction of ADH deficits."
Posts: 4563 | From TX | Registered: Sep 2002
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