posted
I have pretty bad memory loss from Lyme. It’s bad enough that I am disabled. It’s not what I want but it’s what has happened. I get very little money and have no idea how to afford treatment. Is there anything I can do to combat the Lyme brain?
Posts: 10 | From Ford City, Pa | Registered: Nov 2017
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posted
MRIs all show nothing. At least the last one I had, but memory tests show diminished memory. Not sure I had a cat scan.
Posts: 10 | From Ford City, Pa | Registered: Nov 2017
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Most neurologists are not able to help with lyme issues. Not at all.
Most scans also can't show in black and white the reasons for the brain fog issues / memory issues.
Your LLMD is the best person to talk to about this. Treating lyme and other infections is the most important step. Liver support is key in that regard.
Other things that help reduce inflammation important but won't cut it if infections are not adequately addressed.
Were you treated? Adequately?
If treatment was long ago and for several years, a combination with rotations and considered all other possible tick borne infections and other chronic stealth infections like Cpn and Mycoplasmas . . .
then, still call your past LLMD and see if you can have a little phone chat to see if maybe something else should now be considered.
If treatment was not adequate, then - somehow - that's the hop-scotch square to go back to.
In addition to heavy metals, also consider GLUTEN. It can cause all kinds of brain issues in some people, even if not a true celiac.
Food additives . . . household chemicals and personal care chemicals. Avoid scented products.
If you have gas heat / stove / water heater be sure to do a fresh air flush each day of all rooms in your home, all levels. And have a professional come out and inspect your gas connection to all appliances. This matters. A lot.
Various Rx and some OTC items can affect the brain / memory, too. Especially sleep & mood Rx and OTC. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- I see you have posted in "seeking" so are now hoping to connect and maybe get these questions answered.
There is hope. Many with lyme / other TBD / other chronic stealth infections have found their brain function / memory can improve when treating such infections has gotten underway . . . when there is good liver support and other nutrients on board.
The liver support is key because any brain when overwhelmed with toxins (whether from infections or otherwise) will get muddled.
Also the inflammation caused by infection or chemical exposure can be somewhat eased by liver support / antioxidants.
You might try some Qigong for a gentle exercise that also seems to help with brain function. SINGING, too. Or learn a musical instrument. Be sure to get out in nature, too - away from traffic (don't walk in exhaust).
Look up brain books by PERLMUTTER - support stuff only with his books, though, and don't get overwhelmed with all the suggestions.
Start with COCONUT OIL, organic. 3 x day a nice spoonful of it. If with meal, add AFTER cooking, just before serving.
Don't consume any one food day in and day out, though. Alternate. Other good brain oils: Extra Virgin Organic Olive Oil . . ..
Hemp Seed Oil (a culinary oil not at all in the same category as marijuana). Mountain Rose Herbs online - and most good real grocery stores will carry organic hemp seed oil.
Some nut oils are excellent. SARDINES, too. Wild Planet is one that is safe regarding heavy metals, etc.
Best to not heat oils for your brain. Only heat a little oil for sauteeing, say and add the rest as it's served so it's fresh. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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some discussion here of the side effects for some sleep Rx that can dull memory during the daytime. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Too much glutamate (and for those with lyme / neuro illness any added can be too much) - literally, it can kill our memory cells.
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us - and actually kill nerve tissue - when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- In some people - Gluten can damage brain cells for various reasons. Just touching on some of those, scroll way down. Other things here can cause inflammation and inflammation can damage nerve cells, too.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Curious: might you be sensitive to certain flowery smells / scents / products? If so, that might be MCS and MCS can cause all kinds of brain cognitive challenges yet can get better with liver support and steering clear of chemicals on and around you.
By changing out certain soaps, lotions, detergents - and especially dish washer detergent (the chemical steam can send that right to the brain, it seems for me) . . . you might find your brain works better for you.
Even if a product is labeled as "natural" or even environmentally safe, that does mean it may not contain harsh ingredients.
Recently, after skin issues of many users, even Seventh Generation lost a lawsuit due to an ingredient being in one of their products.
posted
I went through three rounds of treatment. Two oral antibiotics then a PIC line. None were with an LLMD. The PIC line was with an infectious disease doctor.
Posts: 10 | From Ford City, Pa | Registered: Nov 2017
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Keebler
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posted
- "rounds" can be confusing but sounds short.
IV treatment with ID doctors generally is just one Rx and for short times, too. One in a while there may be an ID doctor who is a member of ILADS or who might offer more complex treatment in line with ILADS approach. But mostly if an ID doctor treats lyme it will be short courses of single drugs.
Hopefully, yours was better than the typical one, though.
However, if treatment might not have been adequate, what you are experiencing with your brain may be chronic lyme - and while that can be sad - there is hope that it could get better with proper treatment.
Treatment outcome various so much between people, though, since each treatment plan needs to be tailored specifically to the patient and each patient's case is unique.
The various coinfections on board really complicate matters as drugs that treat lyme do not even touch some of the other coinfections. Hopefully, too, your ID doctor assess for all those.
While some newer Rx or other approaches might now be around - here's a basic template that shows the kinds of combinations / rotations to consider for adequate treatment - or how to determine if the ID doctor covered all the bases, or even most of them:
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
Page 27 - SUPPORTIVE THERAPY & CERTAIN ABSOLUTE RULES for self -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- If you ever had steroids, that can also complicate treatment / outcome. Still, whatever history . . . there's always a good chance to get better. Always.
While you sort out a new assessment with a good LLMD, focus in nutrition and good sleep w/o any sleep drug for reasons described in the sleep thread.
Often, bad sleep can cause a person to act "drunk" - really. A bad night of sleep can cause a driver's reaction time to be the same, or worse, even - than someone drunk.
And, for instance, the sleep drug Ambien, can cause some to have huge gaps in their memory.
Other kinds of Rx can also affect memory. If you take any statin, be mindful of the side effects. And check side effects for each Rx you might be taking.
And acetaminophen (over the counter Tylenol) can, too, as it affects the liver and when the liver is sluggish, the memory follows.
With lyme, sleep can be very much affected. If this might be the case for you, the sleep thread has some good detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- In case you might be taking this classification of drug:
All of these affect sleep, which is so vital to health. When I am tired due to fitfull sleep, I cannot find words and have difficulty speaking. I have burnt hard boiled eggs on the stove. Burnt pans and meals. Forgot to bring in dogs from outside. Forget conversations.
Slowly, I have addressed each of my issues that cause me broken sleep.
I lower the temperature in my bed room. I started on low dose immunology shots for allergies. Got a pain management Doctor for wide-spread pain. Xanax for stress due to frightening Lyme symptoms. Epsom bath to relax muscles and replenish magnesium. No electronics in my bedroom.
I now use timer in kitchen. Set it whenever I cook. Caulk board that I write the time I take meds. Plus the time I let the dogs in and out. Post-it notepaper to write myself detailed reminders.
A good nights sleep makes a big difference Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I use a timer and alerts for everything so I don’t forget. Even if someone says call them the next day I will put a reminder or alarm in my phone. I’m going to try taking Japanese knotweed and catsclaw and such to help until I can get to a doctor. I need to save up money.
Posts: 10 | From Ford City, Pa | Registered: Nov 2017
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