posted
Hi folks, having a rough time of it, and this maybe should be on the support forumm. I have been off of antibiotics for about 3 weeks, only because my doctor will not prescribe them until i get up to see him. It is a very long story, and my arms are just too tired to run the bow across the violin strings, but
Is this normal when you get off the meds?
Has all the work that was done by the previous meds i was taking, all for naught?
I am back into feeling bad on all accounts of this disease, the spiritual, emotional, and physical aspects.
I raged a couple of days ago with my husband, and almost again this morning but called my friend, who is a minister, and went to see him. I am a little better, but need a bit more TLC, so am going for a stress therapy massage, in an hour.
I am sure that if i hadnt gone to the minister, i would probably be in my vehicle, going no place except north, and where 4 tanks of gas would get me.
I just as soon be a hermit, and not deal with anyone right now, except for the massage therapist.
The electrical shock waves i get in my head are getting more intense, and i am now starting to hear the electrical shock waves.
I am hurting more now than i think when i first began taking abx.
And i tell you, my emotional health is bad and off the charts. The spiritual is not kicking in either.
my husband is away with work, and i dont have anywhere else to turn to, as my family does not think this disease should affect my psychiatric health and they just wave it away, Out of site, out of mine. So of course i cannot call them, and i also would blow up on them.
So, what do you think. is it because i am of the meds and stress is a bit problematic. Please email if yo wish, i would love to hear from you. Or post on the forum.
I need to know that i am not just nuts, and its the bacteria that is doing it.
and i need some support.
thanks folks, lemonhead
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Posts: 156 | From Corpus Christi, Texas USA | Registered: Sep 2004
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posted
Oh man. I feel for you....BIGTIME! Not having any support with this disease has got to be the PITS. It's bad enough WITH support!
When hubby gets home, please gather the strength to explain to him how you feel and that you need his support. I would also consider apologizing for whatever you raged at him about.
Hope the massage helps!!
When is your appointment with the LLMD?? Got a GP who might bail you out until then??
Come here as often as you need us....even if it's every hour! We care and we want to help you get through this nightmare.
------------------ Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express! oops! Lymetutu
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
You have OUR support...that's what we're here for.
Trout
Gotta Run
------------------ Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! Iowa Lyme Disease Assoc. www.ildf.info
Posts: 5262 | From North East Iowa | Registered: Sep 2002
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Please be assured that is is a symptom of this disease and you are not going bonkers...
Have you had any cephalosporins in your abx treatments?? These should help...also I have used lexapro to aid in the PTSD manic/depression that comes along with this disease....lately I have come down from 30mgs to ten and I have been experiencing the electrical surges you are feeling so I may ramp up again to twenty....
It could also be that I have'nt been on a abx for three months or so....am waiting for this judgement after I ramp back up to twenty mgs lexapro...
It's really tough and you want to run away I know...but as Harry Chapin sang..."You can travel on ten thousand miles, and still stay where you are"......
Hang in there lady...get that llmd to get you something or hold out...maybe a therapist with a license can scribe you some kind of ssri...I know not everyone likes them here...and I had bad times with a few myself...but this one lexapro seems to agree with me and my symptoms...
email me anytime you feel bad....zman
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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Wondering if it would do any good to have a phone consult with a LL psychiatrist. There are a couple of good ones.
Posts: 8430 | From Not available | Registered: Oct 2000
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
please know that you WILL herx after a massage . it moves the toxins around and stirs up the keets..they don't like massages...it will feel great at the time..but watch out tomorrow...
drink lots of water with lemon to flush out the loose toxins...k
lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
Hi lemon. Please PLEASE know tons of us have been thru and are going thru exactly what you are. There were times I thought I just wanted to die. I couldn't feel any emotions, physical, mental, spiritual. But just remember this if you don't hear or see anything else.
THIS TOO SHALL PASS. I have repeated those words to myself at least a million times. Then all of a sudden one day seems a little better, then another, and another.
Even tho I deal with this Lyme every day of my life and never know what effect it will be next, I remember those days that IT DID PASS and how much I enjoyed them.
This is like a cycle with me and probably everyone that has Lyme. It has no rhythm or rhyme and no pattern to fix it. It's a constant changing effect to our bodies and our minds.
I hope this will encourage you to keep going. I find the best thing to do sometimes is just what you did. VENT AND TELL PEOPLE HOW YOU ARE FEELING. For a long time I was embarrassed and wouldn't talk to my family or anybody about Lyme.
When I found this web site it was a life saver. Here you can find people that have actually been thru the dark hole and know what you are feeling. So please don't ever feel you are alone when you come here.
My thoughts and prayers are with you. Please never give up and never give in.
------------------ Debbie V.
Posts: 125 | From Louisiana | Registered: Oct 2004
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posted
I took a few days off the meds too. seems as if a year of meds and I'm in the same nightmare. Few days off pills and all my symptoms come back. Nothing feels real anymore. I don't even know if I've been in so much pain to the etxent hat i can't feel anymore pain or if lyme just shuts my emotions away. i am huritng deep , deep inside, more like mym soul is aching than just my emotions now. I think i'm dreaming sometimes. Does anyone ever feel like their soul is just dying because we're not ourselves anymore and can't do the things we love? Just bedridden? I count the days, one after the other , is there an end to this? Wish I could sleep through it all and wake up when it's all over. Hva eother infections too and must get those treated but without docs who are willing to help, then they leave us with little options. I love life . what would I do to be bale to enjoy the little things, just live a little? Anything! I live in my past , not in the present. although pictures deeply sadden me. I know I can't think of what i have lost but fight for what I can lose and I hold on to that. L Posts: 82 | From canada | Registered: Apr 2005
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not a good place and time to be alone. Glad you came here. This was my sanctuary and I expect that IF i do have chronic lyme it will remain that way.
My husband didn't understand anything about the disease, but I printed up documentation and prepared a letter insisting that my daughter be sprayed with deet to the school, Board of Ed, Board of H, and school nurses. He started to take an interest then.
He would look at me all the time last year and say "what are you thinking". I can't forget this. It felt like my brain did a 180-degree and the sick, in pain, frustrated person came out. I would literally feel the sensation behind my forehead!
You are not alone kid. I don't know about after abx treatment, but my friend gave me massage therapy ( i didn't know what was going on and was desperate to relieve the pain) prior to abx and WOW, there wasn't a place on me that didn't hurt. NOTHING.
Take it slow, rest in between.
You could be herxing and de-toxing from all of the abx polymers a.k.a. PLASTIC
posted
This will not last and you are definitely not alone. We have all been where you are now. I am almost there today. Holding down the rage is really hard and makes my headache worse, so I retreat to Lymenet. Glad you came here. Come as often as you need to. There is always someone here who will make you feel better.
Can you handle a nice, warm bath. I find that soothing somethimes.
Take really good care of yourself. Think of one little thing you can do to make yourself feel a little better. I just hung a picture I've been meaning to for two months. Helped a little.
tj
Posts: 296 | From Portland, OR | Registered: Jun 2003
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This is quickly becoming one of the few places I feel at home. I am so new to this, only 3 weeks on antibiotics but not to rage, mood swings, and every other psychological trait described on this website. I'm learning so much and it helps to know that I'm not alone. I too, often get in my car to drive because there I can scream, say all the things I want to,sing my lungs out to the dixie chicks or write in one of my many notebooks and vent. This disease has taken so much from so many of us. I do think that together feels better than alone and I will say a prayer for you. I also started SAM-E several weeks ago for depression and it has made a moderate difference. It also has helped the joint pain in my feet. Hang in there!
Posts: 460 | From Illinois | Registered: Aug 2005
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posted
Go to ilads.org. Now click on the "Brochures" section on the right. Now click on the "What Psychiatrists Should Know About Lyme Disease." Read the first sentence in the brochure. Note: the Acrobat format may not default to the first sentence. You may have to find it by going to the title page and scrolling down. It reads, "In a published study one-third of psychiatric inpatients showed signs of past infection with the Lyme spirochete." (Am. Journal of Psychiatry)
Doesn't this mean that one in three patients in insane asylums have had Lyme?
posted
Lou, where are these LL psychiatrists. I am in deep south texas, and as far as the docs are concerned here, THERE IS NO LYME DISEASE IN TEXAS. Blah blah blah, tbf tbf tbf. i cant find your email lou
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Posts: 156 | From Corpus Christi, Texas USA | Registered: Sep 2004
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posted
Sorry, I just noticed your reply today. Will email you with names. I don't know if they will do phone consult, but might be worth asking. Don't know what the charge would be.
Maybe there are mental health professionals in your city that might have some experience in dealing with chronic illness cases.
I get pretty low too, but have not consulted any psychs or other therapists. Just cut off contact with friends, family because I am too despondent and it has gone on for way too long. Not seeing any light at the end of the tunnel. One of these days I have got to face up to not ever being well again. Treatment has made me walking wounded rather than disabled, but I was so hoping that perservance would get me to remission. Guess it is more like the situation a diabetic faces, control rather than cure. At least in my case. Not judging your situation or anyone elses.
Well, enough of my troubles. We all get this way sooner or later and have to just wait and hope for better days, or go look for help.
Posts: 8430 | From Not available | Registered: Oct 2000
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