For me, the worst part of Lyme - by far, worse than everything combined - is brain fog. I have had brain fog in the past from allergies but Lyme is a whole new level.
Even with mild brain fog, I become incredibly stressed and have ridiculous anxiety. To me there is no greater stress in life than not being mentally sharp.
I will do anything to help this - is there any kind of medication or supplement or anything that can help?
As the brain fog has become worse, the anxiety has become absolutely overwhelming, and that has led to nightmarish insomnia. I am open to all ideas!!!
(breaking up the post for easier reading for many here)
[ 10-28-2016, 10:48 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
Well, you have the right attitude in terms of wanting to do something about it!
The reality of the treatment situation is that each of us needs to find out what's going to work for us. We may have different causes for these symptoms.
For me, it was thyroid. I tested low thyroid, went on Armour thyroid, which has both T4 and T3 in it, and became present again and could think so much clearer. It was like night and day for me. Have you had thyroid bloodtests?
Your name is saying celiac. There's a possibility this could be gut-related for you. Then it would mean looking at what the celiac experts say about healing your gut and changing your diet.
Some of the speakers have discussed diet, the gut and the brain. The Encore Day is Monday Oct 31 when all talks are available for watching. You could take a look at the speaker list and watch the celiac/gut/brain talks.
Dr Josh Axe, Donna Gates, Dr David Perlmutter, Dr Tom O'Bryan and Dr Peter Osborne come to mind. They all have websites which you could browse to see if they discuss celiac disease and brainfog, and if so, what they recommend doing.
I know Josh Axe encourages people to drink bone broth to help heal the gut.
OK - I JUST CHECKED MY NOTES FROM THE SUMMIT SO FAR AND DR TOM O'BRYAN ADDRESSED CELIAC DISEASE. I suggest you go and look at his website and see if it's possible to do a search for the issue there.
Another treatment you could try - turmeric is a powerful natural anti-inflammatory. Who knows whether it could help your system. I get it in bulk at the health food store and dip empty 00-size capsules into it and take a couple a day.
Posted by stefi42 (Member # 48591) on :
I know exactly what you mean. I had to leave school Bc I simply could not perform. I'm an academic so my brain is something I hold to high standards. That feeling of a stupor you cannot exit is by far worse than any pain I may feel.
I have yet to find something to fully lrevent and limit the brain fog but I have found something that will clear my head, rid me of anxiety, interact with others (hold a conversation is daunting with this!) and actually allow me to sleep at night. I use CBD oil. I would recommend down. Your research on this as it is quite confusing.
If you have any questions about it or are interested, let me know! Hope you find some relief soon!
Posted by foxy loxy (Member # 47053) on :
You could try Taurine and L-theanine. I think a lot of lyme fog anxiety etc is related to a glutamate/ gaba imbalance.
L-theanine really works! Its not as powerful as say xanex but it can help take the edge off if enough is taken.
I find I can concentrate to talk to people better. I don't get as wild of spikes in adrenaline... and that "dread" icky feeling is milder.
and guess what? No side effects! How is that for a sales pitch?
I have anxiety/ concentration issues/memory and brain fog too! Hateful stuff...
Posted by tulips (Member # 44773) on :
In my case, my brain fog was related to Lyme Borrelia. I took Cat's Claw (which crosses the blood/brain barrier) and kills the spirochettes that invade the brain.
Andrographis is another powerful killer that crosses the blood/brain barrier and kills spirochettes.
To keep my mind sharp, I take a Ginkgo each day. I also take a Siberian Ginseng (Eleuthero) which sharpens my mind, enhances the immune system and gives energy.
For mood, I take NAC which most people take for depression and anxiety. I take it because it makes me feel on top of the world (even though most people with Lyme aren't). It is also said to attack biofilm, loosen mucous from the lungs and protect the synovial fluid.
Posted by tulips (Member # 44773) on :
Also, I take supplements 10 minutes apart unless I know they're very compatible - otherwise it can make me feel bad. I especially do this with NAC as it doesn't seem to like being taken with anything else and
always makes me feel like I've taken too much medicine if I take it and then take something else right away. I take my supplements with a tsp of Yogurt which protects my stomach lining from getting irritated.
Posted by lymeandceliac (Member # 48492) on :
Thanks everyone! I've done a lot of this - I am familiar with Dr. Tom, and many other celiac experts online - they are a good resource for sure! My diet is completely free of grains and processed food, as safe as a celiac diet can get, and I haven't eaten out for a couple of years - my house is very GF, we test almost everything ourselves in addition to contacting the manufacturer - so hopefully that's covered!
I have been on NAC and fairly high doses of GABA with l-theanine. If it helps it does not help enough.
Cat's claw - I believe samento is a form of that. I started it on Monday - so far I feel much worse, and I've had awful allergy-like sinus headaches and trouble breathing. Since I'm allergic to most herbs and plants, I'm fearing this isn't herxing but is an allergic reaction.
I've tried ginseng and tumeric - they also made me noticeably worse - but perhaps I should try again?
I've considered asking about an antidepressant to at least control the uncontrollable anxiety, but I am concerned about side effects and interactions with medications that might be used to treat Lyme.
All I know is, the stress of minute to minute life has become overwhelming with the brain fog - I do not remember what relaxed or happy feels like - if only I was the type of person who could be happy watching Tv or reading a book, but I'm not - I need to get out! And that's just too hard right now.
Posted by lymeandceliac (Member # 48492) on :
Oh - thyroid - yes, I had the full panel. I was normal but borderline normal.
Posted by steve1906 (Member # 16206) on :
Hi lymeandceliac, It always saddens me when I read members with these symptoms. I went through this a couple of times throughout the years.
The first time it lasted over a year, I tried everything like you, nothing worked. Then they put me on antidepressants, again, didn't work, only made things worse, much worse.
The only thing that kept me alive was taking long walks everyday. I had to force myself but I did it. I would walk at least twice a day, long walks.
I wish I could help, hang in there, it will get better.
Keep trying didn't approaches, don't ever give up!!!
Steve
Posted by lymeandceliac (Member # 48492) on :
Thanks - I empathize with you! I've been at it six years. There's actually been periods where it's even worse than now but no let up for six years. It's torture!
Going out in public is far too stressful at this point. It's just too confusing and disorienting. Staying home isn't great but for me currently, it beats the alternative.
Posted by TF (Member # 14183) on :
Good lyme treatment gets rid of the brain fog. But, it can take time. Depends on how long you have had it also.
Also, good lyme doctors give antidepressants for lyme anxiety. They do NOT interact with lyme meds or give you any side effects if you go on certain ones. (Some can cause a lot of weight gain. I would skip those unless you are underweight.)
Lyme anxiety is horrible and you really should take something for it.
In the book "The Lyme Disease Solution," there is a long discussion about anxiety and how to treat it various ways. On page 371 he says that Zoloft is the overall best tolerated and the one he prescribes most commonly.
I completely agree with this. I think Zoloft does a great job and you can taper off of it any time to see if you no longer need it.
He also says that severe anxiety is often a clue to the presence of Bartonella/BLO. "[R]ifampin can often be extremely effective in treating severe anxiety symtoms that are due to lyme/TBD." (p. 363)
Posted by lymeandceliac (Member # 48492) on :
I know I have bartonella from the co-inflection panel. My score was quite high, mid 100s I believe.
So one yes and one no for antidepressants! Yes, weight gain scares me. Starting off 20 pounds overweight, undiagnosed celiac caused 100 pound weight gain in one year. I have since lost more than 90 of those pounds. So an antidepressant that doesn't cause weight gain would be very nice!
I sure wish I had an LLMD close by. I am not sure that brain fog, anxiety and general unwellness will allow me to travel beyond a day trip - there are a couple within a day trip but they have a bit of a wait to get in.
Posted by shoeless joe (Member # 45835) on :
gut issues will cause all kinds of anxiety and brain racing(candida)
Artififial sugars wreak havoc
L theanine and 5htp help some for me.
Although addictive ativan has been a lifesaver for me.
Ive been on ativan for a good 8 years and Ive kept it to .05 -1 mg a day so it can be somewhat controlled .
Do you herx on antifungals?
Posted by lymeandceliac (Member # 48492) on :
Don't know - I haven't been on much for antifungals. I was on caprylic acid and molybdenum - I quit the first time after three weeks because of insomnia and also a thirty day dose of doxy. I went back on and quit after three weeks because of chronic diarrhea - I've been off for two weeks now. Perhaps those were herx reactions, but I'm not sure!
Posted by TF (Member # 14183) on :
Sounds like you really need to get on some rifampin.
Zoloft does not cause weight gain.
Posted by Catgirl (Member # 31149) on :
Parasite treatment.
Posted by MannaMe (Member # 33330) on :
My husband has been using Ativan / Lorazepam for the anxiety. Antidepressants did nothing but caused side effects.
The Lorazepam takes the edge off the anxiety. It is addictive and takes long to wean off again.
He's trying to keep it to less than the prescribed dose.
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Yes, weight gain scares me. Starting off 20 pounds overweight, undiagnosed celiac caused 100 pound weight gain in one year. I have since lost more than 90 of those pounds. So an antidepressant that doesn't cause weight gain would be very nice!