IV Rocephen and LA Bicillin intramuscular shots plus Biaxin all the way through have helped me tremendously and still doing Bicillin, now pulsing biaxin (clarithromycin) and pulsing flagyl.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have had no SPECT scans either.
Before treatment I could not go to the grocery store alone because I would get too disoriented sometimes.
I had such poor short-term memory that I asked my daughter five or six times whether she was working that evening within about 45 minutes ... after that, it kind of became a joke because she'd tell me over and over.
I could not read blocks, paragraphs.
I had trouble driving places. At the worst, I was picking my husband up at work to go to Starbucks just as I did every week. I had to keep turning around after wrong turns on the way to his office, then I had to have him tell me how to get to Starbucks as nothing at all looked familiar.
I did not recognize a lady who lives down the street until she told me who she was. This is someone I should have known, but not someone I see every day.
All this is substantially improving. Sometimes I can even read out of books, but not consistently. My memory is still bad, but I'm having more good days. I can consistently go to the grocery with no trouble and I don't get lost driving places as often. I'm not as overwhelmed by it all like I used to be.
I'm not 100% with my cognitive symptoms, but I do see substantial improvement.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I never did have scans, but did have pretty bad confusion.
I also had trouble driving. I often got lost driving places I should know, and had trouble getting back home.
I couldn't get in and out of the grocery store with the three items I went in for.
Scarier, my kids would ask three times for something to eat for dinner, and I would forget.
I couldn't have a conversation with anybody, because if I could even think of what I wanted to say, I couldn't come up with the words. I'd stand there with my mouth open while everybody waited, but nothing would happen.
These symptoms are almost entirely gone now.
I don't need a shopping list, I can talk politics and finish telling a joke, my kids get dinner every night, and I don't run red lights, wondering which color means what.
Now I still do get really tired, and sometimes my word search is a bit slow.
What helped me the most with this was Venex Bee Venom ointment, and Penicillin IM.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
My reading level fell to like a 4th grade level and I was staggering. Perephrial stuff, comprehension problems etc etc. All comprehension came back. Short term mermory takes longer to come back, but is coming back steadily. Recognising people in different situations is coming back slowly but surely as well.
I got rocephin/flagyl/flucanazole for lyme and then got treated for bartonella and systemic yeast/fungal. All were necessary.
I still get dizzy and have problems when I get tired, but I think it's actually just from being tired...
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
no SPECT scans. dementia/brain fog was terrible. it felt like my brain was stuffed to the brim with styrofoam 24/7. couldn't read, write, comprehend, watch TV, make a simple meal, go to the grocery store (too many lights & sounds & products & people; once i got inside i just stood there blankly and had no idea what to do), carry on an intelligible conversation. i completely lost the ability to play music, which was/is my main passion. short-term memory was pretty shot too.
even having recently relapsed, i'm much, much better. i can read whole novels (it takes me awhile, but i can read them!), write poetry occasionally, practice my instruments when i have the energy, watch movies, laugh & talk with friends, even go to poetry readings and concerts (knock on wood!).
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You bring up playing music ... it brought it to my attention that my mind has improved significantly in that area as well!
I play flute at church and for the longest time could only play the melody or harmony, but nothing that wasn't similar to what was being sung.
Since bart treatment, I've been able to play the more "flutey" parts ... the decorative stuff, or counter melodies.
Before I just couldn't count ....
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
me me ME*)!*))*!!
Was going into dementia.. am great now*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
No spet scans either...
Terrible brain fog, unable to understand any article in a newspaper, unable to count money change when buying bread, almost unable to concentrate to cook a single dish (I lost the sequence, first turn on the fire, then pick the pot, add water, then what?...),
terrible difficulty in concentrating to drive, forgot everything (wallet, documents, house key, etc), no short memory, difficulty finding words to speak etc...
How many times I kept turning round and round at a local round-about because I forgot where I wanted to go? Or when I knew where I wanted to go, I forgot which way to go!
Few years before, I was taking my PhD degree, written and defended in two languages that were not my mother language!
It took time to get my capacities back, I'm not sure I'm 100% back. It takes time to get the rust out after not using the brain for long. Now my memory seems to be normal. But I feel like I'm still re-learning how to use my brain again, but now I believe is mostly due to rust!
As for music, it's funny you guys talk about that. Only recently I'm back to my instruments! I'm totally rusty for lack of practicing. During lyme I played no instruments, zero, even didn't sing! I lost a lot due to zero practice, but I'm hoping to catch up slowly again.
Hang in, Adamm! Things will get better with treatment!
Posts: 1086 | From Switzerland | Registered: Oct 2005
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
yep yep, same thing, just less severe. I wasn't neuro-Lyme from what I could tell. I was brainfogged to hell, and starting to be unable to function, but my Lyme issues didn't include too much craziness (once I heard that lyme causes insanity I stopped having rages, which means that it wasn't as bad as what some people experience because I was able to control it before I even went into treatment for the disease). I managed to be sick for 6 years without being depressed, and managed to do some work and become well-known in my field while sick, but couldn't really do focused work of any sort, and towards the end of my illness that got really bad to the point where I was losing work and friends because I was such a flake.
My LLMD claims that brainfog alone isn't neuro-Lyme, and that it's caused by toxicity from the bacteria among other things. It resolved pretty quickly for me with all the detox 'stuff' that he recommended (I was on Welchol as well as health-food-store products like chlorella and bentonite and sodium alginate)
However, prior to treatment I went through a year and a half where i read nothing, lost some jobs, couldn't keep anything together due to memory/concentration problems as well as tiredness . I had soooo much trouble keeping my life straight, and memory was completely shot.
It all came back with about a year of treatment. It later went away a little bit after I had a dental procedure go wrong (meaning mercury exposure probably) but I"m as functional as a normal person now and my memory is as normal as most people. Earlier this spring I had about two months of feeling clearer than I'd ever felt in my life- really, really good word recall, etc.
I"m currently also picking up instruments for the first time in years. I'd lost the ability and concentration, and had also lost my voice probably due to Lyme (because the symptoms went along with the timeline of the disease and resolved with the treatment).
I'm reading 'The Brain That Changes Itself', a very inspirational book about neuroplasticity, or the theory that damaged brains can re-wire themselves to work well again. I'd recommend that very strongly to any of you who've gone through our Lyme issues.
I'm writing a book right now (not about Lyme, but about a technical subject I work in) and I"m hoping to put myself through a re-learning of high school-level math and science topics, which I've forgotten due to it having been a long time ago. I'm planning on considering enrolling in some kind of alternative nontraditional student program at a college, but hope to play catch-up all by myself first for a year or two. Treatment has made this possible.
-------------------- Symptom Free!!! Thank you all!!!!
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Adamm, 15 months ago I could barely finish sentences while speaking; I would forget what I was saying!
Am much better now. Not all the way back to health, but well on my way and I see better things ahead. Please keep treating! It takes a long time but recovery is possible.
Like Maria A mentioned, the detox stuff (Welchol, saunas, great nutrition, chlorella, all the supportive supplements) helps alot too along with, for me, non stop abx treatment.
Posts: 2557 | From home | Registered: Aug 2006
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
I was pretty goofy but I think it was from being so sick, sore, and tired...like having the flu.
I could still reason thru the whole thing and my snarky sense of humor kept me going.
The whole episode left me sort of cynical and sarcastic, though you'd never know it....
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Because my brain is not back yet, I am not able to read what the others posted.
But, I am excited because lately I have been able to do things I have not been able to do for a long time.
Tonight, I was able to put fresh green beans in a baking dish, add creme of mushroom soup, milk and cut up some onions and add that.
Before, the brain and the arms were not talking to each other. I could not have done this.
I would not even trust myself with a glass baking bowl or near the oven for that matter as in the past I would have dropped the bowl and burned myself.
I also was on my feet while I did this.
My brain is not back yet, but I am starting to see glimpses of it.
Able to take a stand up shower and remember if I have washed my hair or not.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I suffered short term memory loss and mild mental confusion. I could not concentrate or comprehend.
I began my lyme treatment homeopathically with a board certified homeopath who used remedies approved by the FDA.
My mental issues were the first thing to clear and it only took about 30 days. I had been suffering migraines and short term memory loss for about 10 yrs prior to treatment. The mental confusion about 10 mths prior to treatment.
That was 2 yrs ago and until just recently (about 1 mth) I had perfect mental clarity.
Now I am beginning to forget everything again and sometimes having trouble staying focused. I began abx treatment in June due to a rebite in May. This is the first abx treatment I have received.
The abx have helped a lot but I do believe the abx are chasing the bugs into my brain. I am going to talk to my present LLMD about using homeopathy along with the abx. I will certainly work with the original doctor as well as the LLMD. I don't believe LLMD is versed in homeopathy although she does do alternative treatments.
I don't want the mental issues again.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
kam, from what i've read it sounds like you've been making some really awesome progress lately. you're still & always an inspiration to me, and i send you lots of love.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam about 80% physicaly mind is 90% but I ve lost my sence of humor which was lets say, I wasnt wrapped right!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam still treating too.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
No SPECTs done, but MRI's showed lesions.
I am 100% 99% of the time... my mind is in full gear. I was a total mess before.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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