I am in between drs, recently moved from NY. My head pressure seems to be getting worse, despite the Neurontin, and even though my MRI was normal, I am now convinced it's a brain tumor.
I have no other neurological signs except for short term memory loss and inability to organize and deal with paperwork, or anything for that matter.
I am probably clinically depressed as well. These are new symptoms for me, had been so stable in NY after 2 and a half years that we were finally able to move.
I know intellectually that my symptoms are what so many others have and that if the head pain and pressure were serious, the MRI would have showed something. But when I wake up yet another day, after over 2 months of unrelenting head pressure like someone is standing here and squeezing, I just can't take any more.
I have to make it until next Tuesday, although I don't even know how I can drive alone to the East Coast. My husband has a new job since we just moved and absolutely can't take off. I know that God will be with me and help me get there, or so I hope.
Can someone say nice things please? I can't stop crying. I hurt and I'm now scared.
For the record since I know you will ask, I am on Zithromax and Ceftin, and a host of supplements, not to mention acupuncture and cranio-sacral therapy.
How is it that we can do everything there is, in every modality, and still have no help? It isn't fair. And yes, I am feeling sorry for myself and a victim, after years of fighting back.
While I can't offer you any great words of advice, just know that others are thinking of you.
I don't know much about you or your situation but I can bet that the move has really stirred things up in your body - that's a lot of stress physically and emotionally to move.
You have a different climate to get used to, different surrounds, etc.
Now the headaches may be a combination of things - I'm no doctor but again all the changes can effect your head, the temperature and humidity, maybe even your meds - could you be herxing???
Don't know, but just trying to give you some things to ponder....
Yes we all have times like yours where we feel sorry for ourselves and ticked off about the whole deal - gosh, you wouldn't be normal if you didn't.
If you were actually comfortable with all this and enjoying it, then I'd really worry about you and probably not respond to you!!!!!
If you can tolerate it, go sit out on your porch or lanai (always wanted to say that - I love 'The Golden Girls') and just rest.
If the sun hurts your eyes, close them and think about the fact you will never have to shovel your car out of a snow pile ever again!!!!
That you will not have to wear wool undies!
That your boots can be converted into trendy little plantholders!
That your new friend Cootiegirl is coming to visit you next summer when she is in Florida and bringing the kids, parents and friends over for a friendly cookout!!! Naw! Wouldn't want to give you a bigger headache!!!!!
cootiegirl
Then about your head pressure the only drug that worked to get rid of it for me was Dynabac, thats the good news bad news the company that made it stopped but dont fret yet because there are a lot of phamacies that still have it on there shelves.
I had that head pressure so bad it felt like someone hit me there with a baseball bat and it hurt to even blink.
My LLMD said it was lyme induced encephilitis it wont go away by itself you need to shift your abx's around one at a time. I feel so sorry for your pain and predicament praying for you .Tree
Hang in there
ps anti inflamatories need to get the swelling inside your head down
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Couldn't ya say something more uplifting than the fact that you and your gang of cooties is pounding down on her?
She feels bad enough already!
I'm sorry l,m,n,o,p.. oh.. I mean lhm...
Some idiot fixed Cooties computer and now we ALL have to suffer!
And I will warn you.. the nastier you are to her... which I TRY, I TRY..
The more she comes right back in here .. dancing in your face! Sorry....
Bad enough to have Lyme.. but having to put up with Cootie too?! Life ain't fair!
I have a couple of thoughts.
First...
Think about this..
You have waitied all your life to get to this new appointment.
I don't know how old you are.. but my bet is.. that is a pretty long time.
The point being..
You WILL make it another week. I am sure of it.
It will seem like an eternity... but it will come.
I am also not knowing all your details..
But may I suggest...
Zithromax is hard on MANY folks.. way TOO hard. Combining it with another med can make you feel like you are going to die.
The second thought..
And yes.. it MUST be a good day if I have 2 thoughts total!!!
Babesiosis.
That head pressure you describe.
You would think the MRI should show little devils dancing on your brain... but NOTHING.
A BIG FAT NOTHING!
Use to make me wanna flatten the MRI doctors tires when they wrote their report that said "NOTHING"!
I was SURE at least my brain was in a vise grip... ready to explode.
I lived with that pressure every day for nearly 145 years.
OK.. maybe it was more like 15.. but it felt like a million zillion years.
Not till I was treated for Babesia did it go away.
And oh gee what a relief it was.
I am not saying that is what it is... but I am offering that as a possibility.
My third thought..
HOLY COW.. a new record for meeeeeeeee...
Herx.
One of the most frequent lines we hear folks say would be..
"Is this a herx or am I going to die?"
I have thought that a zillion times myself.
So please know you are not alone.. and it WILL get better. Your head doesn't actually explode.
Hmmmmmmmmm.. on second thought...if it does... don't be coming back whining to me... cause I ain't a doctor. OK?
I just THINK it is impossible for someone's head to explode.
Never saw it happen.. but I would imagine.. if your name was St. Helen's or something like that...
It just might?
Anyhow... I hope you feel better knowing that at least I am not coming to visit. And I will try hard to stop Cootie from carrying the whole gang down your way.
OK?
Feel better soon.. little goon!
But I do know first hand that the mental pain and the ****ing regret. (strong emotions here)like none of you know what that word is.."`�
are really much worse.
I consider you blessed that you have a hubby by your side and that you were well enough to meet him when you did.
Myself I have been sick since my earlly teens and now in my 20s I am still single.
This hurts the most, I am a good looking person and very nice towards people,,
but the fog and pain and emotional turmoil
have lowered my self esteem so much that I never met anyone, not wanting to burden them with my "problems"
Its like having the scarlet on my chest.
You are in my collective prayer,,
Just know that there is a more pure life after this,, but we have to go through the suffering, in order to learn to trancend it.
I know it sounds corny and inpossible but think absolutelly positive,
every thoughts you have is for a purpose.
Remember it takes about 3-5 minutes of continuous thinking to change an emotion.
GOD is blessing you now and forever
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"I am strong"
"I will make it"
"I have much love and support"
"Many people are praying for me"
"I WILL get better"
Love-Kathy 
Thank you.
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I was just being honest here. I thought this was an open forum.
Now you can use you imagination to fill in the stars as do I when I look at the night sky.
At least its nice to know that in world that doesnt seem to follow the rules
and us having ruleless bacterial demonic parisites ripping and sucking our very divine essence from out beautiful bodies,,
we can still come together to sugar coat our feelings on this board..
Maybee I should try to sprinkle some sugar on those keets and the other infections,,,I hear that sugar is bactericidal.
excuse my sarcasm please
I have been on abx for well over 2 yrs, can you herx at this point? I have no symptoms for babesiosis, could that have come out now?
Inquiring minds want to know..at least I am laughing here for a minute.
Sorry to hear you're feeling so badly. I understand the head pressure too. It's really bad for me today...plus my son is home from school with pneumonia and is very cranky.
Try to think happy thoughts and remember you're not alone in this. Your appt. is ONLY a week away...you made it through the 2 1/2 year wait for Florida, so a week is nothing for you.
Be strong, but remember...we ARE allowed to cry....nothing wrong with that...
Feel free to email me if you need too...we can cry on each others shoulders!
Carol
You have my thoughts and prayers to make it thru each day hour by hour. Go ahead & cry getting it out of your/our systems.
Today is my 30th anniversary; my hubby is one of those rare, unconditional givers of love. He's never known me well since I was misdx for 34 years until this July 04.
Your move has compounded everything. Try to relax and ENJOY whatever you enjoy most in life. Best wishes, and hang in there.
Betty G., Iowa
You might find yourself doing really well once you've gotten used to Florida and taken those boots and made planters of them.
Feel better and know we're thinking of you.
hopeful123
"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.
I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights.
I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life.
I've learned that making a "living" is not the same thing as making a "life."
I've learned that life sometimes gives you a second chance.
I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back.
I've learned that whenever I decide something with an open heart, I usually make the right decision.
I've learned that even when I have pains, I don't have to be one.
I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back.
I've learned that I still have a lot to learn.
I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
((((((((((((Hugs))))))))))))
I'm new to the day-to-day dealings Lyme, but I've had a lot of "drama" in my life over the last 5 years. The sort of drama that might break a person.
Or make them stronger.
I have my days, but for the most part, I strive to be stronger.
My thoughts, prayers, and all the most positive of vibes are willing for you to find the strength you need to make it through.
~Barb
It doesn't bother me one way or the other, just thought you may want to know how to get rid of them.
Sorry for changing the subject...good subject, btw.
Rosemary
Just wanted you to know that you are not alone in the fears that you are having and that if you need support, you've definitely come to the best place around! You sound so much like me it's scary-my mind goes constantly with worries that something else might be going on and I just keep trying to bring myself back around and stay rational, but this disease can really drive you crazy, can't it?
Anyway, I'm fairly new here and I'd love to keep in touch if you want to drop me an email. We'll all be thinking of you on your drive and anxiously waiting to see how you do.
take care,
Kim
2 Corinthians 12:9
'And He has said to me, "My grace is sufficient for you, for power is perfected in weakness.' "
God bless you all for taking the time out of your own pain and issues to be there for me.
This post has been kind of interesting because it shows you how differently everyone handles their situation - humor, anger, prayers, reflections.....
Now you never need to feel 'guilty' that your situation isn't as desperate as someone elses.....no one keeps score around here as to who is the most pathetic! We all have a burden that can overwhelm at any given time.
I'm not one of the sickest - I'm not bedridden, but I have ridden - in a wheelchair while toodling around DisneyWorld. Humiliating....yes to me because I should be racing my kids to the castle, not having them push me to it.
People here were great about booting me in the butt to move beyond the vanity of the situation....and my youngest summed it up the best...."Get over it, Mom!"
I try to find something, any little thing that might be positive in a lousy situation, and to be honest, it did get us in the rides quicker! And my energy level stayed up so we could do so much more as a family.
Humor is my coping mechanism....To me, anger over being sick just doesn't work. It takes too much energy to be angry over something I have little control over, so I'd rather just find something to laugh at! That's one less moment of feeling lousy.
No matter how each person handles this burden, they have grief to work thru - the anger and sadness that things are now different. The wonder if ever we will feel better. The worry that nothing will help.
As you can see, Tincup and I love to play. And TC is fast with the comebacks - at least I let her think she is!
I really like that Angelou poem - gonna copy it and read it.
So keep on keeping on, my friend, and come and vent as you need it - it really helps.
cootiegirl
I luv your outlook on the whole raw deal, and admire your attitude.
Now I find myself wondering how YOU handle tangled christmas tree lights?
Oh geez. Don't tell me. You're Jewish. 
I get out to the pool when I'm not feeling too bad, like the feel of the sun on my body. I spoke to a friend in NY today, and when she said she had to turn on the heat last night, I would have danced here if I felt better.
I think you are right about the changes from the move, these keets certainly let me know they weren't happy.
I think the frustrating thing for all of us is that you can get to a point where you think you are "normal" and then without warning you crash. We love the respite from pain and symptoms, but it makes it all the worse then when it's gone again.
I do try to keep a positive attitude most of the time, and people seeing me would have no clue that I am sometimes hanging by a thread. I think it's the tan and the now blonde highlights.
I am determined to show this illness that it can't get the best of me, and that it needs to adjust to Florida. I may have gotten my fighting spirit back, thanks to the wonderful support here.
quote:
I have been on abx for well over 2 yrs, can you herx at this point?
Yes, especially if you have a change of meds.
quote:
I have no symptoms for babesiosis, could that have come out now?
Many symptoms of babesia overlap those of lyme. One symptom of babesia that is highly relevant here: Babesia makes the lyme much harder to get rid of. I had a really hard time getting over the lyme until I declared total war on babesia.
(artimesia anua, its extract, artimisinin, atovaquone, the atovaquone-proguinil combi, .malerone'.
quote:
Inquiring minds want to know..at least I am laughing here for a minute.[/B]
That's definitely good.
I've resorted to putting the bottled tan on me to give me that healthy overall glow, and then I get yelled at by those board people again for putting that on my skin!!!!!
So where am I going with this....I don't know! But I am glad to hear you are settling in and enjoying the benefits of warm weather. My turtlenecks are now in the process of getting aired out....
To answer your question,nakaa, no I'm not Jewish and here's how I handle the Christmas tree lights.....I am totally disorganized in all aspects of my life except for the tree lights. Each Christmas they are carefully put back on the original plastic do-hicky , sometimes just looped around it, other times snapped back on bulb by bulb! I'm not kidding. We use those little white lights and there are probably 7 strands or so for a seven foot tree.
Each of my Christmas ornaments is unboxed and reboxed each year....my Mom works in a Hallmark gift store and she has been giving us ornaments for years. It's a collector's 'illness' - keep things in their original box!
Wow, do I sound 'anal'. Mind you it's just the Christmas stuff - the rest of my life is organized chaos!!!
cootiegirl