first got lymes at 15..second stage....horrible pains throughout the body..lost of lyme rage(didnt know what it was at the time)..had full body rash-no bullseye..was treated with doxy for 3 weeks..and was told i was cured..
at 21..i started getting a lot of neuro symptoms but had no idea it was the lymes..21 was a hectic year to say the least..a lot of depression and mood swing first and ADD(Which i didnt have prior)..
then eventually i developed severe panic attacks..at the time i had insurance to i went back to the hospital i was diagnosed at, told the doc i had panic attack(never hadem before) and a history of lyme, and was giving klonopin for "generalized aniexty"( this started last may)
the aniexty decreased with the klonopin but i notice i started getting these weird sensations in the back of my head-like burning electrical sensations and sometimes they would migrate all over the back of my head..this scared the crap outta me. i also thought back and within the last 2 years i had had no sex drive whatsoever, bouts of rage,dpression mood swings, ocd about alot of small things etc..my whole personality was shifting..i thought about death and dying a lot and weird mindsets i had never had before overcame me...things were progressively getting weirder and weirder..
being 21-22 i thought maybe this is what all young adults( never thinking for a second it was the lyme)go through but the sensations in the back of the head told me something wasnt right. of course i lost my insurance on july 26 my 22nd bday... a week later i ran into someone and had a convo explaining my wierd situation and happened to mention the history of lyme...he said well yanno..this could all be completey related to the lyme cause it hides in ur cells and comes out when ur stressed and such...and that sent of a light bulb...i research lyme disease..and sure enough...all the symptoms were me..AND I EVEN KNEW THAT I HAD HAD IT BEFORE..just never made the correlation and completely thought i was going nuts for the last 2 years..
now i have no insurance, no family support, and no doc will touch me...
about mid sept- i got sick with the flu(i live in a college town so everyone got it) i think it was strep cause it started out as a throat thing..
i got sick...but then just got sicker..i ended up at john hopkins..with heart problems and severe aniexty..and "awake seziures" where my body would just shake and i couldnt stop it..
i have a lot more to this story but to some it up
i tested positive for it in my blood..ive been to the ER umteen times...i have severe chest pains and an overall weird feeling in my head most of the time...the docs i go to dont know anything and i havent found a llmd yet...i need help and advice and i cant keep going back to the ER..
WHAT IS HAPPENING TO ME ?? WILL IT GO AWAY..
im a poor college student with no family and i havent a clue how to live my life like this..the only thing i do have is a supportive boyfriend who i thank god for everyday... ill give more details about my condition..but first i just need some words of wisdom...even tho ive had it for 7 years...im still so new to all of this..how do i get my brain and body back??
ive been on 600mg doxy-300mg 2x a day..makes my really puking and 4000mg of amoxy for about a month... am i herxing???
whats happening to me??
please help..
quote:
if your going through hell keep going...
-------------------- If Your Going Through Hell, Keep Going... Posts: 99 | From Shepherdstown, WV | Registered: Sep 2006
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I hope some others will come along and give you some more help. But just to let you know that all you have described is consistent with Lyme. YOU HAVE TO FIND A LYME DOCTOR SOMEHOW.
The panic attacks and chest pains I think, are some of the worst symptoms to deal with. And that feeling like you are dying and or losing your mind.
The wierd moving and burning feelings that pop up, we've all been there. Scary as hell.
Don't know a thing about West Virginia but am thinking that Lyme Docs are hard to come by there. How come no family suppport? Do they not believe you?
What is your level of disability or income? Do you qualify for disability or some county medical program?
I wish there was a fund for Lymies that have no way to pay for treatment. While waiting to find a way to get treatment you must concentrate on living well, eating well, and reducing your stress!
Good Luck to you
Robin
Posts: 103 | From California | Registered: Jan 2003
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bettyg
Unregistered
posted
Welcome Better! I sent you a private message, PM, with 19 pages of newbie links/advise/symptoms.
quote:Originally posted by Hope4Better: [QB] hello all,
my name is Lonna and im from the calvert co
first got lymes at 15..second stage.... horrible pains throughout the body.. lost of lyme rage (didnt know what it was at the time).. had full body rash-no bullseye.. was treated with doxy for 3 weeks..and was told i was cured..
at 21..i started getting a lot of neuro symptoms but had no idea it was the lymes..
21 was a hectic year to say the least..a lot of depression and mood swing first and ADD (Which i didnt have prior)..
then eventually i developed severe panic attacks..
at the time i had insurance to i went back to the hospital i was diagnosed at, told the doc i had panic attack (never had em before) and a history of lyme, and was giving klonopin for "generalized aniexty" (this started last may)
the aniexty decreased with the klonopin but i notice i started getting these weird sensations in the back of my head-like burning electrical sensations and sometimes they would migrate all over the back of my head..this scared the crap outta me .
i also thought back and within the last 2 years, i had no sex drive whatsoever, bouts of rage, dpression, mood swings, ocd about alot of small things etc..
my whole personality was shifting..
i thought about death and dying a lot and weird mindsets i had never had before overcame me...things were progressively getting weirder and weirder..
being 21-22 i thought maybe this is what all young adults (never thinking for a second it was the lyme) go through but the sensations in the back of the head told me something wasnt right.
of course i lost my insurance on july 26 my 22nd bday... a week later i ran into someone and had a convo explaining my wierd situation and happened to mention the history of lyme...
he said well yanno..this could all be completey related to the lyme cause it hides in ur cells and comes out when ur stressed and such...and that sent of a light bulb...
i research lyme disease..and sure enough...all the symptoms were me..AND I EVEN KNEW THAT I HAD HAD IT BEFORE..just never made the correlation and completely thought i was going nuts for the last 2 years..
now i have no insurance, no family support, and no doc will touch me...
about mid sept- i got sick with the flu (i live in a college town so everyone got it) i think it was strep cause it started out as a throat thing..
i got sick...but then just got sicker.. i ended up at john hopkins..with heart problems and severe aniexty..and "awake seziures" where my body would just shake and i couldnt stop it..
i have a lot more to this story but to some it up
i tested positive for it in my blood.. ive been to the ER umteen times... i have severe chest pains and an overall weird feeling in my head most of the time... the docs i go to dont know anything
and i havent found a llmd yet...i need help and advice and i cant keep going back to the ER..
WHAT IS HAPPENING TO ME ?? WILL IT GO AWAY..
im a poor college student with no family and i havent a clue how to live my life like this..
the only thing i do have is a supportive boyfriend who i thank god for everyday...
will give more details about my condition..but first i just need some words of wisdom...
even tho ive had it for 7 years...im still so new to all of this..
how do i get my brain and body back??
ive been on 600mg doxy-300mg 2x a day..makes my really puking
whats happening to me?? please help.. "if your going through hell keep going..."
Better, print off Dr. Burrascano's 2005 lyme treatment guidelines. Read it thoroughly.
Read about the HERXING and see the list of herx.
It's not going to be easy, but you can do it.
See the DIRE FINANCES TOO I have in newbie info/advise. Bettyg
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
hey better,
You should have enough to keep you busy with the info from Betty.
Hang in there...a herx won't last forever and you should start feeling better soon...
I used to mash small pieces of fresh bread around some meds that caused nausea that helps a little.
Try to stay calm...and good luck.......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Lyme is a mean, arrogant disease and you probably feel like you wish you had AIDS or Cancer cause at least people would listen to you.
But be grateful it is "only lyme" and it is not a death sentance. You will really need your boyfriend and if you can get to a local lyme support group, it will help to surround yourself with people who understand your suffering and the long process of recovery.
Give yourself at least six months to a year of treatment to feel "human" again.
Patience wins the race, not speed. As soon as you can, alter you lifestyle according to Dr. B's treatment guidelines including major amounts of sleep, no sugar or white flour and supplements if you can tolerate them.
Try the warm epsom baths (a little bit at first) and see if this helps. Reduce all activities--this is not the time to multitask. Ask others to help you till you are back on your feet.
Send your family information on lyme disease including the link to the film
Everyone who loves you needs to be educated about your illness before they can help you.
Enlist loving people to help you do the following:
find a LLdoc, get you to apptmts and take notes, cook you healthy meals, bring you to support groups, listen to your pains, pray for you, figure out how to find and pay for stuff, give you the quiet time and a comfortable space you will need for healing.....
Dont let anyone/thing negative into your life right now cause your healing is the number one priority.....
I have learned to be a warrior since my illness and also to ask for help...there is no other way. The disease is too mean and recovery too painful for anything else.
Blessings and Hugs, Kim
-------------------- We are spiritual beings on a human journey...
First off I am somewhat confused as to whether you actually live in West Virginia and attend Shepherd University.
Calvert Co sounds more like Ireland than West Virginia!!! It is not one of the 55 West Virginia's and definitely nothing close to the county names in the Eastern Panhandle.
And without insurance how did you end up at John Hopkins (which is nowhere near Shepherdstown) instead of at Ruby Memorial Hospital in Morgantown, West Virginia which is part of the WVU hospital system and is affiliated with Shepherd University?
If you can explain those questions then maybe I can give you some advice.
My hillbilly accent and speech patterns are much different than yours, but then I did graduate from WVU.
I really want to help if you are who you say you are.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Your descriptions of symptoms sound oh so familiar and bring back some really bad memories. You've gotten some good advice and some good links that will keep you busy for a while.
I just wanted to add a couple things:
You can treat yourself with herbs and other supplements. They can really help with whatever treatment you are doing and may speed up your recover a little.
My second point is "Don't expect miracles overnight". When I started treatment I was really disappointed because I couldn't see results quickly. As someone mentioned, it may take a half year to finally get over the first hump. Then, all the other smaller humps will probably take years to overcome. Just be patient. The good news is that you are young and will probably respond very well.
- Mike
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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quote:Originally posted by seibertneurolyme: Hi Lonna,
First off I am somewhat confused as to whether you actually live in West Virginia and attend Shepherd University.
Calvert Co sounds more like Ireland than West Virginia!!! It is not one of the 55 West Virginia's and definitely nothing close to the county names in the Eastern Panhandle.
And without insurance how did you end up at John Hopkins (which is nowhere near Shepherdstown) instead of at Ruby Memorial Hospital in Morgantown, West Virginia which is part of the WVU hospital system and is affiliated with Shepherd University?
If you can explain those questions then maybe I can give you some advice.
My hillbilly accent and speech patterns are much different than yours, but then I did graduate from WVU.
I really want to help if you are who you say you are.
Bea Seibert
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Sorry I doubted you were for real, but we have been having lots of problems with troublemakers on this forum in the last week or two.
It is no excuse, but I have been stressed out as well. Hubby woke me up Monday morning and kept saying, "I think maybe I had a strike." He meant to say stroke but couldn't get the right word out.
He was just having some of his usual Lyme symptoms, but he had a pretty good week last week so it has been upsetting for both of us that this week has been so bad.
You mentioned "awake seizures" -- this sounds like what I call seizure-like episodes in hubby. He uses IV Ativan for this. Does your Klonipin help with this? -- that is stronger than the Ativan and should help some with tremors and shaking and muscle spasms.
In my opinion the doxy dose you are taking is rather high -- most people take 400mg per day. There is no way hubby could take both the doxy and amoxy at the same time in the doses you are taking.
The other thing that comes to mind is that it doesn't look like you have been tested or treated for Babesia. Some of your symptoms might possibly point to that coinfection. Do you have nightsweats or headaches?
I totally agree that there aren't a lot of docs in West Virginia who know anything about Lyme -- I would love to take hubby home to live with my parents on their farm in West Virginia but can't because of the doc situation.
If you have not read them yet, the 2005 Treatment Guidelines from Dr B would be a good place to start. Some of the nutritional supplements listed there could be of help, but the CoQ10 which is good for both the heart and brain can be expensive.
You are young and should be able to beat this disease, but it may take a couple of years or more. Diet and nutrition are equally important to antibiotics as far as I am concerned. Be sure to take acidophilus or you will end up with a Candida yeast infection and your symptoms will become even more confusing.
I think there may be an LLMD around Cumberland, MD -- check with the Maryland support groups.
I thought Shepherd College changed its name to Shepherd University?
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Try and get away from Johns Hopkins ASAP or you may end up dxed with MS like I was.
Posts: 11 | From Maryland | Registered: Feb 2006
| IP: Logged |
posted
i only went there b/c i had no insurance and i thought maybe with a positive test already they might be able to start treatment(this was in the beginning when at 22 i realized the lyme was back in full force-i had to go cause i thought i was having a heart attack)
but ill never go there again..they were obnoxious and told me i just had a lot of aniexty..were supposed to check lyme titers..and instead drew blood and said.." well you have an irregular heartbeat and arrthymia but we dont know why...and oh were not gonna test your blood because we think aniexty is causing all this"
all that with a already positive lyme history *2nd stage* !!!!!
geez...it common sense...whats up with these ducks..all they had to do was google lyme disease..yanno!
never going to johns hopkins again thats fo so!
-------------------- If Your Going Through Hell, Keep Going... Posts: 99 | From Shepherdstown, WV | Registered: Sep 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lonna,
Have you spoken to anybody at your college about the insurance problem? They might have low-cost insurance options through the school or know of community health centers.
Lyme treatment isn't easy. You do want to find an LLMD who is really knowledgeable, you can post in the seeking doctors forum. I know of none in WV, but there are some in MD and VA.
I was infected when I was 12, and didn't get diagnosed until I was 28. Although my symptoms are very different than yours, mostly pain, I recognize a lot of what you said.
I had doctors refuse to consider Lyme. I also had the difficulty of not recognizing symptoms because I assumed it was part of growing or life. I even had doctors tell me I just had growing pains.
But it is really important that you found this site and you are taking control of your health. I wish you luck and time to read through all the newbie links.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
im really sad today..im having really bad mood swings and crying spells..
i have an appt. next tues with an infectous disease specialist at wvu(female doc fischer)
i just feel like im going crazy today..
the college wont help me. i tried them first. ive never found it so hard to get help before. i dont know what to do in the meantime but lock myself in my house and hope that my bf doesnt leave me cause im going nuts..
am i getting worse or just herxing??
im just so confused and sad today, i called outta work AGAIN and im not going to school and i feel so guilty but i feel sooo sick in the head.
i needed to vent and im sorry if this post doesnt make much sense. but im so sad today.
-------------------- If Your Going Through Hell, Keep Going... Posts: 99 | From Shepherdstown, WV | Registered: Sep 2006
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posted
I remember you are on 600mg of doxy a day plus the amox...maybe ask your doc if you could reduce the dose of doxy. (I herxed real bad in the beginning in 300mg a day of doxy alone.)
Make sure your bf reads a little about your struggle with lyme and the above link to film
The feelings you have now will pass. Keep reminding yourself this is only temporary...you will be sane and healthy again.
Wish I could do more or visit but I am in CT where they not only don't know anything about lyme...they get mad if you bring it up.
We must work together to help each other and bring attn to this horrible disease.
Hugs to you today, Kim
-------------------- We are spiritual beings on a human journey...
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lonna,
Did you see a doctor who prescribed the antibiotics? If yes, is the infectious disease doctor a different doctor?
Most infectious disease doctors do not treat chronic Lyme Disease. You will notice information posted on the board recently that the IDSA (Infections Disease Society of America) just released updated guidelines and they say there is no such thing as Chronic Lyme.
So if you have a doctor who believes you do have Lyme, this ID doc may very well say it's not possible.
I just want to give you a heads up.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Depression and anxiety are both symptoms of Lyme disease.
Remembering that helped me initially, when I would start to feel like I was going nuts. I'd just think that it wasn't me, it was part of the disease.
I hope you're able to find something optimistic soon.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Dear Lonna,
You poor baby!
The first part is the hardest! I am very glad to hear that you are on some abx and you will learn here how to find a dr that understands lyme.
The insurance issue is real hard..but there are a lot of folks here who have similar struggles and have figured out how to get treatment.
Are you taking a full load of courses? That would be a lot to do at the beginning of lyme treatment.
It is hard, but you will need to rethink which activities you can committ to so that you can focus on getting better. I feel like the bearer of bad news, but the pattern is that you feel worse before you feel better.
We were really sick and are improving a lot on the abx. There is much hope for you to recover, especially now that you are getting your diagnosis figured out!
Take Care, Char
Posts: 1230 | From US | Registered: Nov 2005
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posted
Lonna, I'm so sorry you're going through this. I hope it all starts looking up for you real soon. Good luck with everything! Know we're all here to listen--venting, whatever, that's what we're here for! Posts: 89 | From UT | Registered: Jun 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Lonna,
Sorry that you are not feeling well. But, 600mg doxy/day sounds like a high dose to me -- when I took doxy, it was only 400mg/day. And some folks here on lymenet have written that depression is a possible side-effect of doxy (not to mention, lyme disease itself can cause depression as well as herxing).
So, maybe you should speak with your doctor about lowering the dose? There are antibiotics like amoxy that do not cause depression as a primary side-effect.
I hope that you feel better soon!
Posts: 2557 | From home | Registered: Aug 2006
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