posted
I have this constant brain fog 24/7 that never goes away. I know people say they have fog, but not constantly. It is all day every day. I feel like my brain isn't my own. It is more perceptions. My brain just doesn't seem to be able to process things. I feel toxic.
I can talk and everything, but it feels like I am aware of reality but I am not in it. Everything sort of feels like a dream like state and I am not actually living the moments.
Everything just looks off, and indoor lighting is the worst. It doesn't look normal to me. It looks really bright and like my brain can't process it to just look normal in a room. Dimmed lights also look weird to me.
I have been to numerous doctors and have been diagnosed with lyme and mold. My most recent doctor found high inflammation in my body and mold according to Shoemaker labs, and he doesn't think I have lyme.
Half his practice are lyme patients, so it isn't that he is one of those who doesn't believe in lyme disease, he just simply doesn't think it is my main problem due to the mold labs.
I have never had anyone describe their brain symptoms the way I do, and sometimes I really question if I have something that hasn't yet been discovered or some rare disease no one can figure out.
I am out off mold and taking binders but I don't remotely feel any better, and most of the time meds just make me feel worse. I end up tingling way more and the same happens with supplements. Supplements have made me run a fever.
I really don't know what is wrong and I am losing hope. I just feel like no one can fix me and it is so depressing. I wonder if anyone else has had a similar experience?
(breaking up the post for easier reading for many here)
[ 03-04-2017, 01:03 AM: Message edited by: Robin123 ]
Posts: 28 | From Virginia | Registered: Jan 2017
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I don't know for others, but your description seems very common for neuro-lyme.
Derealization, depersonalization, dissociation, feeling in a dream, losing short memory, constant fog, mental and physical fatigue, not feeling present, extreme anxiety, loss of control of thoughts, feelings...
I had, I think, all of that during lyme.
Inflammation alone can do that, and you'll have worse periods during flares, bit better without flares (but brain fog can remain 100% of the time).
For me, the only way out were binders in BIG amounts. About 30 minutes after a cocktail of binders, I could see the whole fog going out, like vaccuming my fog out.
In my case, no binders meant 100% of the time on extreme fatigue, extreme fog, frequent flares from inflammation.
Mold alone can give you fog. If mold is present, no way to get out of brain fog (maybe binders would help too, but I'm not sure).
Allergies, any allergy, also food allergies, gluten, milk, whatever you react, can give you fog.
the more you take mold killers, lyme killers, the worse the fog. That is why adding binders made, for me, a huge difference: after one dose of killers (mold or lyme killers), I took MANY doses of binders.
organ support also helps: liver support, lymph support, kidney support (herbs, supplements).
Indoor light, you mean, fluorescent light? If yes, that is THE worse. Most people suffer from it too.
In my case, I had bouts of problems with light, even sunlight.
I know EXACTLY what you mean by any light not looking real. It's like you are wearing a color glass in front, watching everything through a screen.
Viruses can do that (I think bart too, if my memory is good). Babesia made my light perception also feel crazy.
The only good thing I can tell you, all that is long gone for me. It was lyme.
After I got once bitten again by a tick, I remember starting to see the light again, funnily.
I knew then the tick was contaminated!
Keep treating. What you describe sounds either infection or toxins in excess (herxes / allergies / inflammation), or both together.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
What binders were you on? I was taking welchol and also a supplement that helps remove neurotoxins from the brain. Also diflucan (but I am concerned it is hard on my liver)
I have seen no improvement in symptoms. I am worried I am treating for mold and it isn't there, but I guess a binder regardless may just helps remove bad stuff from the body.
Posts: 28 | From Virginia | Registered: Jan 2017
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posted
Brussels has all good and helpful things to consider.
I know exactly what you describe. For starters I would try homeopathic Baptisia tinctoria 30c for toxic feeling and for the feeling of your "brain not feeling like your own." I'd start out with one dose and then how see I went. I could repeat that up to 3 times a day if needed. If I improved I would stop it.
The next must have is OPC Sorb by Pure Encapsulations. I find 2 three times a day helps a lot even though the labels says 1 two times a day. It cleans up free radicals on the brain. That saved me from almost 100% brain debilitation. Most OPCs don't work at all.
I have other supports but that is where I would start. In fact, today I thought I would start gearing my practice towards brain fog specialization.
Feel free to PM me. There is hope! Best of luck!
Disclaimer: Consult your physician for your medical needs.
posted
I have had Lyme since 1990 and neurological problems since December 1994. I have experienced similar sensation problems to what you are describing. For instance, walking onto a metro train and the car seems tilted. Also severe cognitive and speech problems.
I am doing much better now because I stay on antibiotic regimens (after experiencing the severe cognitive and speech problems in 1994, my doctor put me on intravenous Rocephin. I have been on antibiotics since. Orals for many years now).
I have tried purely natural regimens but they ultimately fail on me. By 2 months I will start really deteriorating.
So a few things (understanding i am not a medical doctor): a) what you are experiencing seems very lyme like; b) find a doctor who will treat you with antibiotics; c) you really need a combination of antibiotics;
d) others report cures on natural regimens, but for me it doesn't work. But i do take naturals, its just that only antibiotics provide effective treatment for me, not a cure-unfortunately, but effective treatment.
Good Luck, you have the support of the whole Lyme community.
(breaking up the post for easier reading for many here)
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up still winning's post (above) so all can read it:
I have had Lyme since 1990 and neurological problems since December 1994. I have experienced similar sensation problems to what you are describing.
For instance, walking onto a metro train and the car seems tilted. Also severe cognitive and speech problems.
I am doing much better now because I stay on antibiotic regimens (after experiencing the severe cognitive and speech problems in 1994, my doctor put me on intravenous Rocephin. I have been on antibiotics since. Orals for many years now).
I have tried purely natural regimens but they ultimately fail on me. By 2 months I will start really deteriorating.
So a few things (understanding i am not a medical doctor):
a) what you are experiencing seems very lyme like;
b) find a doctor who will treat you with antibiotics;
c) you really need a combination of antibiotics;
d) others report cures on natural regimens, but for me it doesn't work.
But i do take naturals, its just that only antibiotics provide effective treatment for me, not a cure-unfortunately, but effective treatment.
Good Luck, you have the support of the whole Lyme community.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Look into neurotoxin binders.
My favorite are: - chlorella vulgaris or chlorella pyrenoidosa (helps gut, liver)
- MSM in powder (high in organic sulphur, binds to most heavy metals)
- bear garlic tincture (very soothing for my kidneys)
I had added other things during lyme treatment, such as activated charcoal, zeolite, Diatomaceous earth etc.
Supplements for liver (milk thistle, for example) helped me a lot too (I never stopped it during lyme).
Homeopathics helped too (like what lookup is talking about).
Some people fare well with drugs and killers. They usually have better detox abilities than myself.
I never did well with drugs and killers only. These killers occupied only 5% of what I was taking to get off lyme.
Your symptoms definitively look very normal, common with neuro lyme.
Some people believe they are merely from infections, but I do think herxes (= neurotoxins) causes tons of symptoms.
Most of my neuro symptoms kept going and coming after binders. I took binders, they faded. Then started raising again, until next binder intake.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Tryingtogetwell - here's what has worked for me with the symptoms you're describing - and we're all different, so it will be a matter of you experimenting to see what's going to work for you.
I was found through bloodtesting to be hypothyroid, so I went on Armour thyroid and felt present again, like I was back. My doctor explained that it's like the body goes into hibernation when sick so we're waking it up again and getting better metabolism going again.
Some do well going on Naturethroid.
Have you bloodtested your thyroid levels? Your doctor will know what to test.
Re the lighting issue - I am able to stop all Lyme eye symptoms by drinking mangosteen juice, an anti-inflammatory juice. I drink the Mango-Xan version as it's the most tart. It's found in healthfood stores and online. I drink about an ounce a day.
I'm also going to suggest trying a very simple remedy that I don't think has any bad side effects - taking turmeric, which is anti-inflammatory. It could possibly help your whole body.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I second getting the thyroid checked. Hypothyroidism makes thinking very difficult!
Posts: 764 | From Northwest | Registered: Sep 2014
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posted
Another thing that can make the brain foggy is ammonia build up from poor liver function which could be due to mercury (and other things but mercury is a biggie). It has to do with the Phase 2 detox sulfation/thiol pathway.
Could be interesting to do an experiment by eating low thiol foods (not too hard to do) for 10 days and see how it goes.
If brain fog clears then ding-ding-ding there is a sulphur/thiol detox issue that is causing ammonia to build up in the brain. Dr. Amy Yasko says that should be addressed even before the methylation issue.
There are some over the counter supplements listed to help bring things back to normal. You can run them past your doctor.
There is a list also of supplements high in the sulfur/thiol groups. Alpha Lipoic Acid, NAC and others!
I found the list in link two to be more accurate than foods suggested in link one. For instance, link one says to make a green drink with dandelion greens but the list on link two states that greens are high in thiol.
Posts: 764 | From Northwest | Registered: Sep 2014
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Why doesn't he think you have Lyme? What tests have you had? Have you been evaluated for co-infections?
Why does he think you have mold illness? What tests have you had for that?
What binders are you taking for mold? CSM?
Lyme and mold sx overlap. And tho two often overlap. You could certainly have both issues.
Posts: 1737 | From Virginia | Registered: Aug 2011
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