Guest guest Posted February 26, 2011 Report Share Posted February 26, 2011 Hi there. I too have neuro lyme and poor cognitive function. I met with someone this past monday in Mill Valley, who works with LLMD's in San and Santa , he recommended two products to me and my 7 year old daughter. He believes 90% of the general population are deficient in trace minerals, and we can all benefit from detoxing (especially those of us with Lyme), which both of these supplements address: ConcenTrace: http://www.vitacost.com/Trace-Minerals-Research-Low-Sodium-ConcenTrace-Trace-Min\ eral-DropsZNatural - http://znatural.com/index-html.htmlI've been thinking about supplementing with Lithium, which is in the ConcenTrace, and the ZNatural is a magnesium silica molecule detox compound. I was led to believe that they can help tremendously with fatigue/energy and brain fog issues. I started with only 5 drops and am going up in 5 drop increments every 3-4 days, so I am not at the full dose yet, so it's too soon to be able to give an opinion as to effectiveness, but I will keep you posted. I'm planning to give it to my daughter once I've given it try for 2 weeks. I haven't done much research on Lithium yet, but I've heard from others with Lyme that they use it to help protect their brain from neurotoxins. It was listed as a supportive supplement (as lithium orotate) in a book that I checked out of my local library: http://www.lymebook.com/top10book (which also mentions its ability to help generate new grey matter in the brain). Here is a link I found with some general information about Lithium: http://tahomaclinicblog.com/lithium-the-misunderstood-mineral-part-1/ Also, not sure where you are located, but I can give you the name of a Lyme Literate pediatric and adult neurologist in San , California if you are interested. Best of luck, > > From: lesliefarhangi@... > Date: Sat, 26 Feb 2011 12:30:54 -0500 > Subject: Re: [ ] advice needed > > Thank you so much everyone, I am so glad I posted. I hesitated -- I can't > even speak about my son publicly these days without bursting into tears, > which is a bit embarrassing! :-) > > I do not know how reversible or not the damage is -- we haven't had a follow > up appt with the neurologist yet, plus he is running a TON of bloodwork > (which I agree with, to see if there's something autoimmune going on too > etc) and also doing a sleep study and more neuropsych testing. After all > the tests are in, we'll go back to our LLMD and get his take too. > > Those lesions might be the same thing -- the radiologist thought his was > either caused by a stroke, or inflammation, and also was not sure what the > effect was. The difference is that our neurologist believes it is > consequential. Treatment has *not* improved my son's cognitive function. > > Thank you SO much for telling me about the interactive metronome -- this is > EXACTLY what I'm hoping to learn. I am completely up for trying a bunch of > therapies like this over the rest of the school year and over the summer. > As it is, he isn't really able to cope with sixth grade. > > Again, thank you so much for the words of support. I feel like this is a > very dark time for us. > > > > On Sat, Feb 26, 2011 at 10:51 AM, Faces <faces@...> wrote: > > > > > > > What does your LLMD say about the lesion? I am just wondering if it > > really is permanent. My daughter had a SPECT scan that showed problems > > that our regular doctor described as the cortex dieing and felt it was > > nonreversable damage. She had several MRIs that showed small white > > spots, some kind of lesion? that they were not sure what caused it. The > > neurologist felt they were inconsequential. This is not what your doctor > > described, but in my daughters case treatment has vastly improved her > > cognitive function and her LLMD said that sometimes the SPECT scans do > > show improvement over time. (We have not had a repeat one done though.) > > I am just wondering if this is truly permanent damage or something that > > can come back? I really do not know, but if the neurologist is not > > really Lyme literate, I would want to get to one who is. > > > > So sorry that the Lyme was missed even when you mentioned a tick bite!! > > My daughter was bitten around age 2 or so and we never knew it. She had > > ring worm that would not go away and CFS type symptoms and tons of > > insect bites, but no known tick. She was not diagnosed for a dozen years. > > > > Good luck, > > > > > > > > > > On 2/26/2011 8:24 AM, Farhangi wrote: > > > > > > My 11 year old has had neurological complications from lyme. Our LLMD > > > referred us to a great neurologist, who is in the middle of doing a ton > > of > > > tests. However, an MRI shows a lesion in his frontal lobe that the > > > neurologist believes is caused by the lyme inflammation. This is > > upsetting > > > because the damage is permanent. > > > > > > In the midst of this I called my son's pediatrician (at first the > > > radiologist thought the lesion was an old stroke) and asked her about an > > > office visit I remembered from when my son was 2. I remembered him > > > dragging > > > his left leg, and so I asked her to go over her notes and see if there > > was > > > anything that would shed light on his current situation. She read them to > > > me over the phone. She said I told her that he had been bitten by a tick > > > two months earlier, and that he was definitely dragging his left leg and > > > didn't want to be touched on his left side. She did not do a lyme test. > > > > > > OK, so now for my questions: > > > > > > 1. it is unlikely, but does anyone have any experience with trying to > > > overcome such a brain injury? My only hope, I think, is some kind of > > > neural > > > feedback to try and build other pathways to replace the damaged ones > > > in his > > > brain. I don't know if this is even possible. > > > > > > 2. Seems like the pediatrician committed malpractice to me -- I live in a > > > highly lyme endemic area, why the !@#$% *wouldn't* she have just done > > > a lyme > > > test, thus preventing permanent brain damage? Comments? Of course we > > don't > > > know for sure if he had lyme then b/c no test was done. I am furious, and > > > one outcome I would want is education for the doctors here that when a > > > child > > > (or anyone) comes in with unusual symptoms -- and especially if they say > > > they've been bitten by a tick -- for god's sake, just run the test! > > > (Understanding it is not 100% accurate, but it is 100% more accurate than > > > doing nothing!!). > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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