My daughter is feeling better enough to want to go back to school "as soon as possible". Even if she were physically well enough to go back, she has a lot of catching up to do.
Her brain is still not working well. She has trouble paying attention when she is reading or when we are talking about her reading. I think she would just be sitting there in a daze if she went back to school now.
Her LLMD has her on a Flagyl pulse and working up, because she says brain fog is often helped by Flagyl. Obviously, we are hoping for that to work, but I'm wondering about some symptom relief in the meantime.
Has anyone used ADHD meds for this kind of problem? Namenda? Anything else?
Her LL psychiatrist gave us a prescription for Namenda already, months ago. We've made other changes in her meds so the time didn't seem right to start that. Now, I'm wondering if that is the best approach to take with ADD issues as severe as hers.
I will ask him when we talk to him again, but wanted to see what has worked for others.
Posted by mazou (Member # 15319) on :
My LLMD prescribed an ADD med to try to pull me out of the fog (Vyvanse). It just made me move faster (like I had about 40 cups of coffee), not think any better. He said to discontinue.
I think ADD meds might help the appearance of ADD-like symptoms to others, making it look like the person is on the ball. My personal feeling was that it would just wear me down by burning out all of my energy.
Just my personal experience. Wishing your daughter a full recovery.
Posted by Haley (Member # 22008) on :
Flagyl may help in the long run but it makes me very dazed when I'm on it. Just be aware that if she has more brain fog in the beginning it doesn't mean that the medicine isn't working.
Posted by lymeinhell (Member # 4622) on :
Put a drop of peppermint oil (therapeutic grade) above each eyebrow and under her nose. Then have her cup her hands and inhale deeply for at least 30 seconds. The oil will help those tired muscles in her eyes and will wake up her brain. Sometimes the reading difficulty comes from plain tired muscles, since our body is already expending all its energy fighting infection.
Peppermint oil is proven to help concentration and memory - once upon a time I had a link to proven research.
Posted by nefferdun (Member # 20157) on :
I would avoid chemicals for ADD because that is not what is causing her brain fog. She needs time to recover and she needs treatment for all the infections she has.
Most people have co-infections and each one of them affects the mind and emotions. My brain is clearing up more since I started babesia treatment.
There are supplements that will help. Acetyl L Carnitine boosts memory and stamina. I take 1000mg along with 600mg Alpha Lipoic Acid which is a powerful antioxidant and detoxer (especially for the liver).
Huperzine is supposed to help and some people swear by coconut oil. Ginkgo is also supposed to be helpful. But I didn't see any improvement when taking these particular supplements so I quit using them.
In addition to ALA and ALCAR, I take a 1000mg of niacinamide twice a day to help restore nerve function. I did a test to determine if it actually works. You stand with eyes shut and raise one foot to the other knee. Depending on how well your body is sending messages to your brain, a young person should be able to balance without opening the eyes or swinging the arms, for about 30 seconds.
At my age I should be able to balance at least 8 seconds. I fell over immediately! Now after about two weeks or so using it I can balance about 4-5 seconds.
Niacinimade helps with brain cognition too. It is given to people with dementia. It is good for other things as well - seems to help with inflammation and regeneration of cells. It is given to kids with acne and also diabetics.
Don't confuse it with niacin which causes flushing. This does not cause flushing and has no side effects except for stomach upset in some people so it is recommended to take it with food.
Posted by ktkdommer (Member # 29020) on :
My son is back to school this week for the first time since April 19th. He takes Adderall XR 30 mgs. He took it before becoming ill. He asks for it as he knows he needs it. He still struggles cognitively with Lyme issues. We meet next week to discuss his IEP and new needs. I was giving him alpha lipoic acid, milk thistle and glutathione and he went even more hyper.
Posted by momlyme (Member # 27775) on :
My son is treating babesia and doing the HPU protocol which is knocking out heavy metals.
I read the book "Amalgam Illness" to get a better grasp on the heavy metal chelation.
In this book, A.C. mentions hydergine to help with the brain fog. I did some research on it and it is used mostly with Alzheimer patients. Not recommended for children (but what is)?
So I did some searching through Autism support forums and found a few moms who were using it with success.
What it does is allow more oxygen to the brain...
And yes, it only relieves a symptom... but a little relief goes a long way. We continue to treat the cause and my son is enjoying some relief from his brain fog.
He has been taking hydergine for 2 weeks, 3 times a day. PM me for dosages if you are interested.
I agree with nefferdun. I would not add more chemicals...would look for natural options, as the fog should go away as the infections continue to decrease.
So great to hear she is feeling better!!!! That is wonderful. Was it IV that helped? What do you attribute the progress to?
tickbattler
Posted by jkmom (Member # 14004) on :
Not IV, but a new LLMD and heavy duty abx. I feel like she is getting a life back, but she still has a long ways to go. The fact that she is even talking about going back to school is huge.
Thanks for all the ideas. I already have some Japanese Knotweed that I can add. I will try that first.
Posted by farraday (Member # 21494) on :
I can now read an entire book after more than ten years of bedridden misery and total confusion. Memory is still terrible, speech is much better and cognition is better, too.
I agree that the only real way to fix this is with the long term abx. That is what my well known LLMD says.
However, I do have a few things to add to that. First of all, I take a tiny dose of Nuvigil in the am (about 7.5 ml). I think that is related to some of the other meds listed here.
If I need more to get going in the am I drink a cup of tea with the caffeine. The rest of the day I drink decaf herbal tea. I wonder why I am so drawn to tea with peppermint in it.....
I have had cognitive therapy and I see quite a few kids there. It may help your daughter to go for awhile. If anything it may cheer her and help her to feel empowered to help herself.
My final trick is an old Chinese one: acupuncture. BUT you must be sure to find a very talented and experienced one. The AC increases blood flow to the brain. A simple demonstration occurs every time I see my spouse with a bright red face after treatment! I have learned how to use the needles myself in a very limited way.
I am always sad to read about a child struggling with this. And from personal experience as both a caregiver and a care receiver I know how difficult it is for Mom. Take time for yourself on a regular basis! Get your hair done, get a massage...just something to lift you up so that you can continue to hold her up.
PM me if you need more ideas or help.
Posted by chiquita incognita (Member # 30381) on :
There are so many things that can cause brain fog. Infections, nutritional deficiencies, allergies (foods especially), leaky gut syndrome, heavy metal exposure, the list goes on and on. Where to start? Testing. I would recommend finding a naturophatic doctor here: www.naturopathic.org
See Linda Rector Page ND's book "Healthy Healing"
Do a search on this website where only the renowned naturopaths post their articles: www.healthy.net
Gingko biloba extract has been clinically tested and here is what it does. It strengthens the red blood cell membrane, enabling the transporting of oxygen and nutrients to the brain and probably almost every cell in the body, considering that blood circulates everywhere. Clinical alzheimer's cases have been halted in its progression and in some cases even reversed with it, especially in combination with the herb gotu kola. More reading: Ginkgo by Christopher Hobbs, LAc.
Fish oils, particularly DHA help to build brain tissue. Make sure they are cold-pressed (very important to prevent oxidizing) and heavy metal-free, I recommend the Nordic Naturals brand, it is excellent and exceeds Norwegian government purity standards, testing by 3rd parties at 0 ppb routinely.The stuff sold at Costco (Kirkland brand) is crap, it is mixed with soy oil and contains more than 300 ppm heavy metals and other contaminants. You get what you pay for.
Good nutrition and food allergen avoidance could be key. So could heavy metal testing.
Best wishes with this!
Posted by lymeboy (Member # 24769) on :
I know that there are natural alternatives to drugs like Adderal and ritalin. They are supposed to actually work better. Doers anyone know what they are?
Posted by Jane2904 (Member # 15917) on :
Jk's mom. So glad to hear that your daughter is getting better. Posted by rmsfnc (Member # 27539) on :
Knotweed has done wonders for me I think. Been about 4-5 weeks off abx and only lingering symptom was head pressure/brain fogg. A few days of knotweed and it was clear. I stopped all supplements for a week with a GI bug. Pressure and fog returned. A few days of knotweed gone again. Wether it is from the knotweed or just remaining toxins idk.
Posted by TerryK (Member # 8552) on :
I would look at quinolinic acid for your daughter. Buhner states in his book "Healing Lyme" that brain fog will not improve until something is done to address this if it is a problem.
copying from a previous post of mine in case you haven't seen it.
I'll add, you may need to try several things to get to the bottom of what is causing your issues. In addition to the information below, you will want to have an evaluation of your blood sugars, thyroid, adrenals etc. etc...
Lack of acetylcholine causes memory loss, problems learning etc. and is implicated in alzheimers disease. Many think that Alzheimers disease is connected to lyme. There is a list of acetylcholine boosters in the article.
Also consider: choline/inositol huperzine A
Toxins can cause all kinds of problems including brain fog. Consider using some of the detox protocols if you aren't already. Lots of info in the archives.
Quinolinic acid is a toxin to the brain and is often elevated in lyme patients. Steven Buhner talks about ways to help lower levels in his book "Healing Lyme". I posted several times in the past with info from his book about this. You can find that info in the archives with suggestions on supplements to protect your brain.
Brain inflammation can contribute to brain fog. Lack of sleep, depression or vitamin defeciences are other things that should be addressed to help brain fog. Keep your mind working. Challenge your mind.
Heavy metals are released when borrelia dies. This can cause a lot of memory/brain fog issues. I've been on heavy metal binders the whole time I've been in treatment. It helps a LOT!
Terry I'm not a doctor
Posted by CherylSue (Member # 13077) on :
Doxycycline and time helped my cognitive problems. I felt a difference in 10 days.
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