djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i have neuro lyme and wanted to start a new thread for neuro lymers.
please feel free to list symptoms and treatments,
i am interestd.
i am seeing dr c (part of dr B's practice) in rhinebeck ny. he estimates i have had lyme 5-7 yrs. i was given steroids for an infection in noviember of 06 and since then the lyme has raged in my body. i have had every major symptom but the worst now are:
extremely stiff neck pressure in head & temples inabiity to concentrate very long (i have been out of work since this started, debilitated) encelopathy speech problems (stuttering, lack of ability) pressure in spine extreme muscle soreness extreme fatigue there are many more but these are the worst. the symptoms are worse on the left side of my body. i am on week 2 of 4g rocephin a day. i have completely changed my diet and now take tons of supplements. its very disconcerting because i can feel the "aliens" in my neck, back, head, temples etc. i am starting to notice a small difference w/ the rocephin, i was nearly a zombie before i started it. my insurance has cleared me iv thru may 8th, but i am concerned this will not be enough. anyway, i am 24 and extremely frustrated trying to deal with this. fortunately i have a wonderful fiance who is supporting me. anyone who has a similar experience or can offer some advice or encouragement i would greatly appreciate it.
I had a migraine type head ache continuously for 4-5 months last year, and now it just comes as stabbing pains in my head, eyes and ears as I herx with treatment. I also have long periods of not really being able to think clearly and with zip for motivation.
I had migrating left side joint pains for years.
My initial "attack" in 1992 was total insomnia for a long enough period to make me psychotic, with super acute hearing and require a long hospital stay. Then for a year after I would get lost in familiar places, not be able to tell the meaning of red/green light, which side of the road was I really driving on, grocery shop, cross the street (when I gave up driving). Basically I lost a lot of basic functioning, which slowly came back.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi there-
glad you have some support, and that you're getting treatment. that's a good start; better than many get.
i can't offer you any words of wisdom. i'm 5 years into what is mostly neuro-lyme and 1 year into treatment, and overall, haven't seen any progress.
all i can offer is to say trust yourself and what your body tells you along the way. even when you wish it weren't so and that someone else could tell you exactly what's what's with your health and your life, you and only you will be the expert about what works best for you.
best of luck-- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
ALL of the following are gone- thanks to my LLMD and 1 year or orals, 9 months of IV Rocephin- during which time I was unresponsive until month 7 of IV- *************************************************
progressive multis-sytem neurological disease characterized by
progressive muscle weakness
slurring (and I don't drinK!)
vagus nerve fainting disorder
chorea in left hand
body jolts
neurogenic bladder/incontinence
brain going into dementia
trembles
twitches everywhere
choking when swallowing
handwriting became different small handscould not use right anymore
got SLOW
lost balance
falling
hitting doorways depth perception off
earthquake feelings
rolling ship feelings
giant limb twitches/spasms
RLS
whole body giant chorea/body jolts
complete numbness starting in toes and in course of year up to right below knees/upper calves could stick pins in
also IBS FMS MCS CFS ALL GONE!!!!!!!!!!!!!!!
-------------------- 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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posted
My neuro lyme symptoms are (i)muscle twitches, primarily calf muscles, but sometimes other places, (ii)burning skin, (iii) deep muscle pain in calf muscles, (iv) floaters, (iv) stiff neck, and(v) dizziness..
was on doxy for 9 months, now on ceftin. Also taking alinia for cyst form of LD and numerous supplements. Dizziness is 90% gone. Floaters were gone for 4 months. recently returned. other symptoms not worse, but not better.
Am going to talk with my Doc about efficacy of rocephin. The muscle twitches are painful, very distracting. Have noticed that sleeping pills subdues the twitches. Doc says it b/c sleep meds increase gabba in body. Good Luck. I would like to hear from others about their neuro symptoms & what has helped & what has not.
Posts: 213 | From ohio | Registered: Jul 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Neuro symptoms for me included
-severe, unrelenting migraine -pain in eyes, twitching eyelids -stiff neck -extreme sensitivity to noise -seeing repeat patterns in vision after thing is gone (palinopsia) -memory loss -losing my way to familiar places. I could "see" the destination in my mind but could not figure out how to get there. -an almost narcoleptic-like inability to stay awake. -word finding difficulties, substituting instead what the thing does for what it's called. -bilateral pain in forearms. -complete loss of ability to multi-task.
Treatment: Doxy for a month, then Amoxy+Probenecid, one month IV Rocephin (doc wanted way more but insurance balked), Flagyl, Biaxin XL, the usual treatment for positive babesia tests, and most recently minocycline.
Discovering babesia 1 year into treatment did not exactly speed things up as far as recovery goes.
Some things are much better. Some are GONE! Some are still a problem:
Still hanging around: -fatigue (though some days I'm pretty good!) -headache (not as constant as before) -memory loss -occasional disorientation re place -multi-tasking still ain't happening.
Keep chipping away at it. Best of luck!
Michelle
PS**********Omigosh, this is my 2,000th post!
Posts: 3193 | From Northern California | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
In 8/05 when chronic Lyme was diagnosed, I was suffering migraines, brain fog, memory loss, hearing loss, stiff neck (had been having these progressivly for 10 yrs after initial infection)and migrating joint pain.
I was treated homeopathically. Very quickly all symptoms disappeared except the joint pain which progressed rapidly and severely until Jan 06 I was diagnosed Rheum. Arthritis.
The migraines, brain fog, memory loss have never returned. The stiff neck has returned as well as off/on again hearing loss.
Today, I have days of no pain and days of pain in my joints. Rarely, I will have some swelling in my fingers. This is a vast improvement since Jan 1 yr ago.
This weekend I trailrode my horse 4 hrs on Saturday which is extremely physical and on Sunday I rode a champion thoroughbred racehorse (not in a race though)and participated in a rescue from a car that literally flew off the road, went airborne and landed in the creek. To get to the car, I had to climb over a fence, slide down an extremely steep enbankment, wade into the creek and try to stop a man with a bleeding head injury who was clearly in shock from getting out of his car and wondering out into traffic. (I failed to contain the man)
All the same, this was quite a weekend for someone with "rheumatoid arthritis". This morning my hands and ankles hurt but not enough to need a pain killer.
So far, I am mostly treating my illness with doctors who do not use abx but rather are working to build up my deficiencies in my body and build up my immune system.
The fellow who owns the champion racehorse (he won $160,000 last year alone) is, believe it or not, a research scientist. He is deeply involved in something very big for AIDS. He has had success with it in Europe and is working for clinical trials here in America.
So, at lunch, I asked him what he knew of Lyme. He quietly said "The spirochete is a bacteria that acts like a virus". If it gets into the nerve tissue (I think I'm quoting him correctly about saying "nerve tissue"...I know he meant neurolyme) there is nothing you can do about it. Antibiotics won't touch it. He had a sad look on his face that I knew was pity for me, so apparently he knew I had been diagnosed with Lyme.
There were too many people and too many conversations revolving around him for me to dig any deeper with him. But from that brief conversation, I took it that my best hope in beating this disease is my own immune system and I feel my doctors are definitely using the best treatment course for me.
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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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks for all the replies-
luvs-
what did u do to improve immune system?
california lyme- you didnt see any improvement for 7 months? how did you get rocephin approved for so long?
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