I have been off abx for a month, longest break yet, and sadly my symptoms are kicking right back up. But I am having new, weird symptoms in my head that I'm trying to know what to make of... maybe someone can help me gauge all this.
I get this swollen brain feeling on and off, along with mild vertigo, it lasts usually an hour or a few hours, and occasionally during this I get these sudden, what I'm calling brain throbs, like an energy wave goes through my head for just a second, its kind of startling.
And also during these swollen brain periods, I've noticed that if I turn my eyes to the left or right, I get sort of a similar throb - I don't know if it's my eye muscles or my brain or what.
I am definitely having a resurgence of brain fog & spaciness too.
I saw my doctor this week and when I told him about the eye thing he said, "that's not so good" and he said its - I'm not sure if this is the right word - meningial?
He definitely did NOT say I have meningitis. But I don't really understand what this is or how serious.
I also have neck stiffness that comes and goes, but not really headaches - not pain - just these aches and throbs that come and go.
I do have other symptoms too - fatigue, ear pressure, tinnitus, but those are mild now. Other little things are popping up too after being gone awhile, like palpitations.
I'm in this place where I am nearing having to talk to relatives about helping me financially, which feels horrible. I'm having so much trouble working or being productive at anything.
Soooo... I'm trying to gauge where I am and how I can explain it to my family. I'm like the walking wounded who looks fine (don't we all) and I even question myself - am I overestimating this, am I being lazy. "How sick is she...?"
I'm going back on oral abx tomorrow, so back to herxing, and I'm looking into IV (have been doing oral only with an excellent LLMD for a year and a half now) and this is all just taking so LONG...
*sigh*
Thoughts?
Thank you!
Dancer
Posted by wantabe (Member # 14703) on :
Before I started treatment, I would have the same electrical charges on my right side temple.
At times I could start and stop them with blinking.
During a massage, it started and the guy freaked- he could feel it. I was happy someone believed me.
It eventually got worse, and I had major "seizure-like" episodes. Mayo dx as chronic viral meningitis- "very rare"-of course, there was no treatment-just had to live with the pain...
Luckily, I kept looking for help=I haven't had the electrical charges since I started Lyme treatment.
I didn't have any answers for you just wanted you to know you are not alone. Many hugs Posted by Dancer (Member # 11039) on :
Wantabe, thanks for posting your experience. I can sure use those hugs - that was sweet, thanks!
Posted by von (Member # 8333) on :
Hi dancer,
I am pretty sure Meningeal inflammation is the same as meningitis.
Perhaps you have a 'subacute' form?
Your description of stiff neck, swollen brain, brain fog, eye pain,pressure..... well, sounds exactly like me.
My LLMD called it 'inflammation from your nerological infection' You know, bugs in the brain.
Sometimes reality is a slap in the face, huh? I like to think that I will be better next month. And one of these months it will be true. But I have been thinking 'next month' for two and a half years.
I believe I will get well, but sister, I think we have a way to go.
You may want to consider filing for SSD. I have decided that is what I need to do. I worked through having my month IV, and a few years of illness,which in retrospect was not doing myself any favors.
from answers.com:
Sci-Tech Encyclopedia: Meningitis Inflammation of the meninges. Certain types of meningitis are associated with distinctive abnormalities in the cerebrospinal fluid. With certain types of meningitis, especially bacterial, the causative organism can usually be recovered from the fluid. See also Meninges.
Meningeal inflammation in most cases is caused by invasion of the cerebrospinal fluid by an infectious organism. Noninfectious causes also occur. For example, in immune-mediated disorders antigen-antibody reactions can cause meningeal inflammation.....
Many viruses can cause meningeal inflammation, a condition referred to as viral aseptic meningitis. The most common viral causes include the enteroviruses, the various herpesviruses, viruses transmitted by arthropods, the human immunodeficiency virus type I (HIV-1), and formerly, the mumps virus. If the virus attacks mainly the brain rather than the spinal cord, the disorder is termed viral encephalitis. See also Animal virus; Arboviral encephalitides; Enterovirus; Herpes.
Fungal, parasitic, and rickettsial meningitis are less common in the United States than are bacterial and viral. These infections are more likely to be subacute or chronic than those caused by bacteria or viruses; in most cases, the meningeal inflammation is associated with brain involvement. An acute form of aseptic meningitis can occur in the spirochetal diseases, syphilis and Lyme disease. See also Lyme disease; Medical mycology; Medical parasitology; Rickettsioses; Syphilis.
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Posted by madge (Member # 13704) on :
my hubsand has been suffering these same symptoms for over 6 yrs...been treated now for lyme for 20 mts and i'm glad to say things are changing for the better at last...mind you they are small but its a start...we go to see Dr. today and i'm sure he will also see a change...so all i, as well as others, want to say is, hang in there..some times it gets worse before it gets better...take care
Posted by njlymemom (Member # 15088) on :
HI, you are not alone, and I feel for you.
Mine started as pressure, pain. Then seizure like
activity. Abx was increased last fall and I
was not feeling this so often. Now just recently
it started again. I am afraid I don't have a
solution other than for you to start treatment
as you already know. A spect scan could show
you more of what is going on. My insurance did
cover this.
Just wanted to let you know that you are not
alone and that I know how scary it is. It is
the only symptom that makes me just fall apart.
Posted by onthemend (Member # 13454) on :
As many posted above, I too have had the 'electrical charge' episodes. So, just add me to the list.
I wanted to comment on getting better - how long - lazy, crazy, impoverished/is re-treatment worth it, etc remarks in your post.
I was very struck when viewing Under Our Skin by the forest ranger Lymie - of course I can't remember his name!! - Jim something? He comes across as the most sane, calm and strong person you could meet. He said he turned a major, major corner at 3 years of treatment.
So, I'm at 1 1/2. The pace of progress is now slow, many times truly unnoticeable (initial progress was amazing, dramatic!). I feel so conflicted, taking medicine so long now for such minimal 'payoff' in increased health. But then I think of this guy - and know I probably have a while to go - and I have never been symptom free - and I am not a whiner, baby, crazy, etc. & neither are you. I say stick with it.
And asking for help is hard, but that's what family is for.
"Cure Unknown" by Pamela Weintraub could help you and them to keep the faith. And seeing "Under Our Skin" would also be very helpful to you and your family.
It's just a very hard slog.
Good Luck -
OTM
Posted by Dancer (Member # 11039) on :
Everybody -- I am SO glad to get all these replies. I don't often ask for help and I know my post was long to read. I am so glad to have a community of support.
I only skimmed through the reponses now because I promised myself today I would FIRST try to make a dent in my pile of undone financial stuff, and hopefully exercise. Hours melt away when I go wandering thru the internet and email.
So I will read and respond more later on. Thank you so much!
Dancer
Posted by von (Member # 8333) on :
Onthemend has a great suggestion, sharing even a little part of Under Our Skin with the family would be helpful.
Here is a link to CNN that talks about lyme and Under Our Skin:
![[group hug]](graemlins/grouphug.gif)