posted
Well, my neurologist's office called...refused to give me test results over the phone...'had to come into see her. No news is good news. So, I just got back...abnormal brain MRI....but compared to last year, about the same...no better no worse. Abnormalities on right side. EEG, though, that had been normal last year is now abnormal, with activity on the left side. Good grief...'can't these bugs just confine themselves to one side of my brain?!?! Anyway...now on an anti-seizure med...of course, combined with all of the other crap that I am taking. My life just sucks...and getting suckier!
Thoughts anyone?
As always...THANKS!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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chiquita incognita
Unregistered
posted
My chiropractic neurologist has been a life saver, he is truly incredible www.acnb.org
Receptor sites in the joints communicate with the brain, so when they do adjustments they are targeting brain centers. He also has me doing infra red treatment with a wand held to specific brain areas.
Then there are cognitive and physical exercises that can be done for brain balance.
The results for me have been such that life-long issues are resolving. Incredible.
This is the doc who diagnosed my lyme and booted me out his door, saying he wanted me "to have the best of the best, and not just someone who has treated a lyme case or two. Walk, don't run!" he said. At last, 30 year history figured out...
I have found that his neuro workups FAR FAR FAR exceed!! the mainstream neurologists and again I say by far! He has caught so many subtle things, some of which I didn't even tell him about, yet he turned around and told me.... his workup was as good or better than any MRI in my book and as it turned out, he has been every bit as accurate. Truly.
NOTE: It's as good as the doctor as always. I have a doc who is noted for outstanding clinical diagnostic skills and who really is an *expert*. I consider him one of the top neurologists in the country, myself. If you want me to PM you the info I will, but of course it takes in person treatment which means travel.... Let me know.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
What is the anti-seizure med and is it helping?
What exactly do they mean by abnormalities?
I had one of those done because I was having migraines at the time; they told me the test shows that you have migraines, that'll be $3,000. great information... they didn't tell me what might be the cause of the migraines (this was before Lyme)
Posts: 2232 | From USA | Registered: Aug 2009
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Lamictal...and 'haven't taken it yet...'will probably start it tonight.
White matter hyperintensities on the right side shown on brain MRI, abnormal EEG/electrical activity on the left side.
Unfortunately, my neurologist thinks that this is all permanent brain damage! I certainly hope not!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Tri, Many people with white matter and other abnormal MRIs have them go back to normal after they go into remission. There is hope. But I'm sorry that you have to deal with this on top of everything else.
Posts: 844 | From CA | Registered: Apr 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I also have white matter lesions in my brain. My girlfriend has 11. Amy Tan had them too. She's doing very well now and back to writing. However, she did mention that she has to be on anti-seizure medication for the rest of her life... so I don't know if her lesions were resolved. I sure hope they will go away but I have no intention of getting any scans.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
The brain lesions, which many have from Lyme, do go away with proper treatment. Not sure about the abnormal electrical activity. What did the neuro say about that? As in seizures or pre-seizures?
How is your treatment going? It takes A LOT of patience! It would try the soul of a saint.
Posts: 3778 | From around | Registered: Mar 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I had 2 small spots and suggestions of atrophy in my brain MRi prior to treatment. 7 months into treatment it was "normal." So yes.. your brain can heal.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
My neuro confirmed that I have had seizures in the past (my last one, I think, was 3/1/10). The EEG confirmed that there is still the risk of them. She put me on lamictal, an anti-seizure med, but my LLMD advised against it, as I have not had any seizures for over a year and he said that it is more of a band-aid approach...and we will not know if the lyme meds are working, if my symptoms are bandaided with an anti-seizure med.
But...I have had nightly brain shocks, every single night straight for over a year (started 2/10), while trying to fall asleep, which I still think could be mini-seizures, even though my LLMD and neuro don't think so...although they don't know WHAT they are....
Ugh!
Rumigirl...I agree with your comment..."it would try the soul of a saint". OMG! YES!!!!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Hi, You have to remember that all this is linked. MS is sister to FM. Lyme is the main corrupter & many the auto Immune diseases, which do not believe you just wake up & body turns on you.DUH, Cause & effect for everything & many superior Docs here & over Seas relating this all to Lyme as culprit. FM rarely goes into emission some part always there. CFIDS can go into remission. 1 Thing we all start out same flu like symptoms, & never totally leave unless you do not have true FM co-infect, Lyme we prob. all carry the mycro. if been bit by anything, just as all have cancer cells,100 diff. types cancer we just shove it all under cancer. Rather same here as cancer just needs trigger may been in brain hiding 30+yrs. That is latest info in basic terms can give. Take Care,Don`t worry can come & go. Hugggggsss,Kerryblue
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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quote:Originally posted by Kerryblue: Hi, You have to remember that all this is linked. MS is sister to FM. Lyme is the main corrupter & many the auto Immune diseases, which do not believe you just wake up & body turns on you.DUH, Cause & effect for everything & many superior Docs here & over Seas relating this all to Lyme as culprit. FM rarely goes into emission some part always there. CFIDS can go into remission. 1 Thing we all start out same flu like symptoms, & never totally leave unless you do not have true FM co-infect, Lyme we prob. all carry the mycro. if been bit by anything, just as all have cancer cells,100 diff. types cancer we just shove it all under cancer. Rather same here as cancer just needs trigger may been in brain hiding 30+yrs. That is latest info in basic terms can give. Take Care,Don`t worry can come & go. Hugggggsss,Kerryblue
Maybe I am must very slow today but I did not follow that post at all..
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Magnesium & Fish Oil are the top two things to help.
Avoid gluten, MSG, aspartame (Google "Hidden Sources of Gluten" - and for all the names the latter two hide under.)
Also avoid foods that are high in glutamate (and clearly avoid L-Glutamine supplements).
In addition to talking to your LLMD about this: --------------------
Tai Chi or Qi Gong can help normalize brain waves as long as the underlying reasons are also addressed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme patients also often face toxicity not just from lyme or coinfections, but from environmental "stuff" such as heavy metals, certain chemicals, etc.
And, for many, their organs of detoxification are stressed or they may have certain dysfunctions that hamper the body's ability to metabolize and move out toxins.
What You Need to Know About Environmental Medicine
--------------------------
Excellent reputation for years. While they do not treat lyme, they have treated patients who have lyme and helped them work through environmental toxicity issues (along with patients' regular LLMDs' advice, of course): ---------
American Academy of Environmental Medicine - upper left menu to find a AAEM doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
The amino acid, Taurine has natural anti seizure properties PLUS many more health benefits. It has no taste and the powder or crystal form can be stirred into water or other beverages.
Do a Google search for benefits of taurine and seizures and taurine. It can be taken in very large amounts. There are studies on it.
Good luck.....
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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I don't have an answer for you, but I do read claims of improvement. My MRI's (2 of them) in 2006 showed "hyperintensities in the deep white matter." Before dx, I had a top-notch university hospital neuro tell me my brain MRI's appeared "normal," yeah right - if he could be in my body for just a couple of minutes, ha.
I see a new LL neuro next week. I am wondering if I should push for comparative testing...MRI or SPECT or EEG (I've never had a SPECT or EEG). My neuro symptoms are still terrible after 2.5 years of multiple orals and 11 months of IV.
I believe I've had some sort of "pseudo-type seizures" in the past. Waking up and head shaking, brain zapping - don't really know how to describe it. I would fully expect tests would find abnormalities. Then I wonder, then what? So we know I'm screwed up, but what to do? It's not like I haven't been trying every abx under the sun. I took a break from abx since October, after 3.5 years with little change it seems rather pointless. Yes, I have treated for co-infections.
I really hope you can get answers and are able to see improvement....me too! Best of luck. TS
Posts: 566 | From West Coast | Registered: May 2008
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and read at the very bottom of notes on Dr. C's where she says, "Tics may be related to HME (Ehrlichia), Bartonella, Borrelia, or heavy metals. Seizures may be related to HME or Bartonella."
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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