I don't know what to do, what to think anymore. I may have read too much about Lyme disease, because I'm so scared right now. I also watched the trailer of the movie "Under Our Skin", and it freaked me out to see all those people permanently sick or disabled because of Lyme.
My symptoms have been flaring up all week, and the way I'm feeling is difficult to bare.
Seems like my whole body is burning, as though I ate poison or am having an allergic reaction. I'm very week, can hardly walk, my face is on fire and the skin on my cheeks and forehead feels like it's being pulled in all directions.
I'm afraid I won't get better. I keep reading about all those people who never improve and whose lives are miserable.
What is the percentage of Lyme victims that do get well? When I start abx (probably next week), how long can it take for me to notice some improvement? How long does the herxheimer reaction (if any) usually lasts?
I have an appointment on Monday morning with a LLMD in NY State. I can't wait! Sometimes it feels like I won't make it till Monday...
Julie
Posted by Tincup (Member # 5829) on :
Hang in there dear one!
You will be ok.
This stuff can seem very frightening... and it can be an awful time for some folks. But many people do get better and head up the road of life.. leaving us in their dust.
What you see here are many folks who weren't diagnosed or treated properly early on... in the days when there weren't LLMD's and we had to fend for ourselves. Not everyone is as awful as what you see here... especially when they get help from a good doctor.
I am glad to hear you are seeing a LLMD. That is the best step you can take... as they are very good.
You should educate yourself.. but now is not a great time to do that as you are very ill and it will scare the pants off of you!
I got so scared sometimes I couldn't even watch the news on tv cause I would be so stressed out that someone was dying for whatever reason. That happens... so do take a break and don't think you are the only one this has happened to.
For now.. try to stick with the facts and NOT worry about what MIGHT be.
Once you are diagnosed and treated... and you feel better... then try to learn more.
OK?
In the meantime... welcome to LymeNet!
We are here to help. Let us know what we can do to make your rocky road a bit smoother.
Posted by Tincup (Member # 5829) on :
Oh.. and the ones who stick around here helping others...
They are absolutely fantastic... and very dedicated to helping others.
Posted by Bobidor (Member # 14453) on :
Thank you, Tincup, for your quick reply and comforting words. I really needed that...
Have you ever heard of Lymies who felt like their whole body was on fire, as if they ran a fever, but with no temperature? What could be causing that? Babesiosis? Bartonella? Posted by Tincup (Member # 5829) on :
Sorry.. I left to visit the NASCAR site. Back now before I close down for the night.
Yes.. I have had that happen before and have heard of others having that symptom.
Kinda like your hot button is stuck on and your face is on fire. Like an "instant" burning sunburn all over.
And you don't sweat when it is happening... and don't show a fever.. and it gets so stupid because you look at the therometer and wonder if it is actually working. You'd bet money it wasn't... cause you feel so hot.
I would think it is either a neuro symptom or a thyroid/adrenal hitch in your giddy-up.
Unless you are having hot flashes?
Be sure to write it down so you can share that with your LLMD. Feel free to ask him/her about it too.
I am not sure there has been a specific reason stated for it... don't remember seeing abstracts on it and I've seen most out there... but it does happen.
I can't remember if it went away with Lyme treatment or Babs treatment now that you ask. And I had bart too... and Parvo and several other infections along with the Lyme... so my picture is complicated with several factors.
Hopefully others will be here at a more decent hour to share their thoughts... and if I weren't so darn tired I might even remember what helped it myself!
The worst thing you can do right now is to get your panties in an uproar. Stress is NOT good when you feel so bad. Bad stress is not good at any time.. so please do all you can to forget the weekend. Monday will be here soon.
So think good thoughts and KNOW you are on the right track and soon you will see a doctor who knows something about this and can help.
By the way. Don't expect to have every question you've ever thought of answered on Monday. It won't happen.
Plus they may need to do blood work.. and waiting for that to come back is possibly the hardest part of this Lyme stuff. You can get VERY wound up about the waiting... so know now that you may not get all of the answers you need or want till your second visit... and be prepared for that to happen.
I don't want you to hang your hopes all on Monday's visit and be upset that you may have to wait for him to "do his thing".
Please give the doctor time to do what they do best... and to get some IMPORTANT pieces to the puzzle gathered that they need to be able to do you right.
You will see they care and they know the scoop.
Now go rest and/or do something to get your mind off Lyme. OK?
Posted by DakotasMom01 (Member # 14141) on :
Hi Bobidor, I can't add to what Tincup posted.
Just wanted to say Welcome, hang in there, and your not alone.
Posted by Geneal (Member # 10375) on :
Ditto what Tincup wrote so well.
Hang in there. The path to getting well isn't an easy one.
The best news is that you will be under the care of a person who
Specializes in Tick Borne Diseases. It does take time though.
Welcome to the board.
Make sure you take paper and pencil to visit.
Bring along someone if you can.
The amount of information is staggering and at times
Very hard to process. I am still working at it over a year later.
Also know that it is common for us "Lymeies" to feel worse initially when
Starting on antibiotics due to "herxing".
Make sure you look through the newbie information.
It is the best resource (other than our members) that you can get.
Hugs,
Geneal
Posted by Monica922 (Member # 13496) on :
Hi Bobidor I am one of the lucky ones that gets to be on fire all over It is called severe peripheral neuropathy and I have it from my scalp to my toes. Actually three months ago I could have been one of the fantastic four superheroes..the fire guy.
I actually run a low temperature...crazy. I have been on IV Rocephin for ten weeks and it has definitely helped....just goes so slow! I also have babesia and I have been on zith 250 and mepron for 3 weeks. I am not sure which one causes the burning...I just want it to stop.
Everyone tells me it will go away so I am hoepful...and it has gotten much better. This is the one symptom that really makes me cry...so be strong and know it will get better. Monica
Posted by Ruthie1776 (Member # 13889) on :
Hi bobidor-
I just got diagnosed Dec. 20th. I am a almost 40
yr (Jan. 29th) mom of two kids 10 and 7. I was
so very sick just like you. I have lyme and
epstein barr virus. Not sure about other co-
infections yet. I am taking doxycycline and
valtrex and diflucan for yeast. I too had the
burning sensations and felt like my face was
morphing into something else. Kind of like Dr.
Jeckyl and Mr. Hyde. It has only been a few
months on the medicines and today I was able to
walk in the mall to shop a little. I can drive
and keep up with laundry and shop for groceries
& make dinner. I have trouble with my short
term memory, but I have learned to be really
nice to myself. It's ok to forget things. For a
long time I was really down on myself not
knowing I couldn't help it.
It is very scary but you it does get better. It
seems hard to fathom right now because you are
so sick and scared but the anxiety does get
better as you improve which helps your health
improve. We all know how you feel and we are
with you. Do whatever you can to relax. Hot
showers saved me and for a while was one of the
only thing that I looked forward to. That and
just sleep.
I do take lunesta to sleep. If you are having
trouble with that you need to discuss it with
your new doctor. Sleep is so important. I too
got very upset after I saw the video. I am so
grateful that they made this movie. But for us
lymies it can be very upsetting. Have faith and
try to be positive. One day when I was in
complete panic mode, I wrote down all of the good
things in my life that were blessings and
everytime I got scared, I pulled out my list and
it eased my mind a little. My thoughts are with
you. Having some support of family and friends
can really help too.
If you don't have them...you have us!
Thinking of you! Ruth
Posted by Lymetoo (Member # 743) on :
The burning could be from Lyme & Co. or yeast, or toxins. So make sure your diet is a good one!!
Posted by Bobidor (Member # 14453) on :
I wrote a message to you people, but it disappeared in virtual space...
I was thanking you for being so supportive and reassuring. I really appreciate you taking the time to write something. It has a soothing effect.
People who suffer a lot seem to be more compassionate, and maybe the reason why I have this disease is to learn how to be more like that, to be a better human being, who's aware of others' suffering.
I think there is always a reason for things happening to us, and if we understand what it is, it's an occasion to grow. We can only appreciate the value of life when we fear to lose it.
OK, getting a bit philosophical here...
All I want to say is THANK YOU SO MUCH for being there...
Julie xxx
Posted by CherylSue (Member # 13077) on :
Burning skin...I can relate. My relapse started with burning skin and fever. It was so bad I couldn't sleep at night. It crept up from my arms, to my back, neck, and face. I used to put wet cloths on my skin to soothe it.
It's been 18 months, and now I just have mild intermittent burning. I started antibiotics in October with my LLMD> He said the burning is biotoxins from the spirochetes beeing killed. They release toxins.
Hang in there. This is a great forum with plenty of support.
CherylSue
Posted by onthemend (Member # 13454) on :
Hi Bobidor,
I had burning skin from my neck to my toes. It was like an all over rug- or sunburn. For about two weeks, I couldn't bathe, shower, etc. it was so painful. The burn was intense, untouched by any pain reliever, and was a 24/7 symptom. It lasted for about 3 months, before I was ever diagnosed or treated. Since you were philosophical, I'll get deep too: it was the symptom that left me in complete despair, and I knew I could not continue to live that way.
The good news: IT WAS ALSO ONE OF MY FIRST SYMPTOMS TO IMPROVE DRAMATICALLY WITH TREATMENT (400 mgs doxy daily)! Within 6-8 weeks it was so improved I could not believe it, and now, after almost one year of treatment, I just have one patch above my right knee that will still sometimes 'burn'. But it is amazing how you are able to tolerate it when it is just one relatively small area, vs. the full body effect.
As others posted, it can probably be due to other causes as well - reactions to meds, etc - but for me, it was pure untreated LD, and it is GONE.
So, you will get better! I promise, promise, promise.
otm
Posted by Ruthie1776 (Member # 13889) on :
HI-
You do see life in a very different way when you have lyme disease. It is really bad to have it,
but I also think of all of the things I have learned and see it it God's work. I have
learned that I am much tougher than I thought I was. Everyone with lyme is tougher than nails and
courageous as a lion! This builds character! The pain you endure makes you that way even if you don't realize it! I
have learned who my real friends are and what an awesome community I live in. Ive learned so
much about how important diet and nutrition are and how to take care of myself and listen to
what my body is telling me. When to rest, when to get up and move, when to take a hot shower,
and when enough is enough...go to bed! Most importantly, I realize how much I want to live
life to it's fullest. Something I took for granted for a long time. We all desearve this
and it is here for us, we just need to be patient and have faith that our bodies will heal and it will get better! And it will...I promise, I promise!
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