Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hey guys, Feeling quite down today. I had a bad panic attack that had been ongoing for 2-3 hours on Fri and ended up in the Er (my first time in the ER for panic after panic attacks for years). I finally slept last night, but feel a little anxious. I am so afraid to start the antibiotics! I'm afraid my anxiety will go through the roof because I'll be afraid of allergic reaction. But after seeing that Leslie died from Lyme, I KNOW I have to do something! I've had this for 12 years. What has this done to my body?
I'm so afraid of dying, but I'm also afraid a herx can hurt me, or complications from the antibiotics. Growing up, my mom hardly ever gave us antibiotics. I had it when I had pnemonia at age 4 and then not again until I was 16! We've always done the natural thing, but I've read to start the antibiotics first to drop the bacterial load and then to start natural stuff.
Has anyone been afraid to start something that could save your life?? I feel so stupid, but the fear is so real, so paralyzing. And as an RN in nursing school (where I had severe anxiety, but managed to get through it with good grades I might add ), we went through anaphyactic shock in great detail, this is where my fear started. Although my mom has a fear of this as well, called me in August after getting stung, wondering after how long she would be in the clear for having a reaction (she swells locally with stings, but not systemically, so no logical need to worry).
I've never had a reaction to anything, besides poison ivy.
My doc prescribed Omnicef 600 mg per day, one posible side effect is anxiety. I read some reviews online where children were becoming violent while on Omnicef.
posted
Half the battle is believing you will succeed before you ever start. You cant go in with fear, anxiety or a sense of failure before you even take your first pill.
Think positive. Abx kill lyme. Lyme is ruining your life. While you may experience some worsening of symptoms while herxing, in the end, long term, it better for you.
You cant die from anxiety. You may feel like it, but you wont. You cant let fear control your life either.
It sounds like youre looking for a shove...so here it is.. do it. Write down a schedule for taking your meds, and just do it. Once you get through the first one, the rest is easy. If you really have substantiated fears of an allergic reaction, then make sure you have someone with you when you take them, at least for the first few days. ok?
Welcome to the first day of the rest of your new life...life without lyme...it starts with one small swallow...
Posts: 514 | From . | Registered: Apr 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I had tne same fears. It's hard to overcome. I finally broke down and told myself I have two choices:
1. Live this horrible existence that obviously wasn't going away on its own after nearly a year; or
2. Come in and try to kill this Lyme.
It's not easy, but my wife badered me enough to push me in the right direction.
So far, I've not experienced anything worse than my initial onset of symptoms. I guess I suffered a lot and was in the ER 6+ times in a year. I knew there was no other way.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Antibiotics for me caused irreversible damage.
I cant really blame my LLMD, but I wish I never started taking them to begin with. My quality of life would have been much, much, much better.
This depresses me every day.
Posts: 2905 | From New England | Registered: Sep 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Was it stomach damage or something else? I'm sorry to hear about this. Any informatioh you can share would be appreciated as it's always good to hear both sides.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Dear Ocean, just take the medicine.
Your anxiety will only increase the longer you wait. Think of when you were a child and had to get a shot, you worried about the shot that it might hurt, etc and then when it's over you hardly felt a thing wondering why you worried in the first place.
You took the steps necessary to see an LLMD, get tested and are now diagnosed. You know what the treatment is. You know that people get better with proper treatment. Doing nothing is not going to help.
It is scary to do something new. I was also terrified to start my antibiotics. I did not want to go that route. I tried the natural route but I was still deteriorating. I thought about it for a long time while waiting to see my LLMD. Alarms were going off in my head "Polypharmacy", "C.diff", "Yeast" "superinfections" "Ahhh" makes you want to scream and run away. But you can't hide. The infection has already taken hold.
Looking back now, I wish that found my LLMD sooner. I wish that had started the antibiotics sooner. Maybe I would be better by now...
And as an RN you know the signs of anaphylaxis. You know when to get help. Maybe it would help if had an Epipen available for peace of mind. And you could have a friend stay with you for a day or two while you start you meds? Something to think about. They could distract you and keep your attention away from the "what ifs".
Ocean, I just want to encourage you. I hope it doesn't sound harsh. You can do this. Sometimes I need someone to shake me and tell me their honest opinions instead of allowing me to stay in my little OCD anxious box. Thought maybe it might help you.
Just my opinion looking back.
Posts: 5237 | From here | Registered: Nov 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks guys,
I feel like I have this mental block, it's absurd. I keep thinking of all the people who aren't helped with the drugs. What if I get worse?
Do people who have had this for more than a decade really get helped with oral antibiotics? I know colitis and c-diff are possible complications from Omnicef.
Oh and my husband works from home, so he is here all the time, I know that the firestation/ambulance is 1 mile from our home and the likelihood is very very small of a severe reaction. I gave many babies IV antibiotics when I worked in the NICU (in between relapses) and none ever had a severe reaction, of course they would get thrush and sometimes a yeast rash on their tummies, but nothing life threatening.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I took the abx for about 8 months. If you feel you are having a bad reaction - you can stop taking them. If you have an allergic reaction - just call an ambulance & go to the ER.
I had Lyme for 9 years - undiagnosed. After taking the abx, I just felt that they weren't going to help me. It's a personal decision...
It's best not to read too much about bad reactions that people have. Everyone is different. Some people do well with abx.
They just weren't for me but I'm glad I tried them. At least now I know I can rule them out as a treatment.
I haven't given up on them permanently. If I see that they are important or necessary towards my treatment, I would try them again.
I just didn't feel like they were going to help me.
Meditation can help with anxiety. There are many good programs or CDs you can buy to help to learn how to relax. It's not difficult.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Very few people have severe reactions to antibiotics. Maybe you can start slow to convince yourself that you are not going to.
The sooner you start the sooner you will begin to feel better. Just tell yourself that.
Also anxiety can be worse due to LD. It is one of the symptoms; so maybe after a while of treatment, the anxiety will get better.
I say just jump right in and start killing those darn little buggers.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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For starters, let me first say, knowledge is power, and by being here, your already on the path to recovery. For most people its a combination between trial and error, will power, education and determination.
If you have had the disease for twelve years, I would actually encourage you to think about some other venues first before abx. I believe that with hard work, and some other modalities, ABX should be reserved for a last line, not a first line. (in other words, see if other things work first, but always consult your doctor)
Don't get me wrong, I think its very important that the lyme community have access to these life saving drugs, but also realize that abx are a double edge sword.
There are many things you need to do to get better again. Your path to wellness will not be linear, which is to say, you can't just do one thing and expect results. If it where that simple, there would only be one thread on this message board, or this board wouldn't exist altogether. The number of messages alone is a testiment to the difficulties of this bug.
However, I truely believe that hope is not lost.
Lets start with the panic attacks: Its a learned behavior.
Now I know I might get some pushback on this, and I'm not coming down on you for having them...they are VERY REAL to the person having them. No doubt about that.....but the funny thing is....they aren't real. No one around you is having the same attack, precicely because they are not real.
Panic attacks are a learned behavior through a negative feedback loop over time. You have learned to associate certain stimuli with a negative response. Long story short, Anxiety is very real. Its when we are at a hightened state usually due to stress. The panic attacks CAN be unlearned...(at least I unlearned them)
The most effective system I know of....(not related to this company in ANY way) is anxietybusters.com. Great stuff and worth every dollar in my humble opinion. She works of the above hypothesis.
As for the lyme: The following are the major therapies that have allowed me to get off and stay off ABX for years now.
1. Mhbot 2. Heat Therapy 3. Diet 4. Supplements
Please feel free to write to me direct, and I would be happy to share both my experience and what I have learned. I am not a doctor, and you should always consult one to make an educated decision. However, you will almost always be your own best advocate, and therefore you owe it to yourself to research, research, research.
The only thing that you should take away from posts like mine is that if your not familiar with it, then you need to learn it. That's what I did on this board (great board by the way), I learned what it was that I needed to learn about.
You situation is not hopeless. Keep you spirits high, know that you can achieve wellness, and that with persistance and perserverance....you can dig yourself out. Let me know if I can help, and there are many other great people on this board that can also help point you in the right direction as well. Posts: 261 | From Washington | Registered: Oct 2002
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posted
I know this doesn't help, but I feel the same way. I guess reading about all the herx reactions and side effects makes me paranoid, but then again so does Lyme. I don't know when I became this way. I remember back in the day as a teenager. I would put all kinds of crap in my body and now im paranoid. Where did that crazy attitude I used to have go. I Wish it would come back for a little while. LOL
Posts: 45 | From western kentucky | Registered: Oct 2008
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Peacesoul
Unregistered
posted
I agree with NOOD and Sparkle in that, you need to try to see if abx are for you And agree panic is a learned behavior, but having said that, I've suffered horrible panic attacks for over 20 yrs and when I started abx, my anxiety was uncontrolled and unprevoked. It's a different kind of anxiety you get when on meds. The anxiety is a 100% chemical reaction.
I have to say, I was in your shoes exacly one year ago. I was terrified to start abx for the exact same reason and I was sick for 14 yrs.
Well I started them and was on them 5 months. I started low does and worked my way up. But never worked my way up to the doses my LLMD wanted me to b/c I knew her doses were extreme. I'm totally against most meds and felt the doses she was rx'ing were poison and not going to only kill the bad but most of the good.
I got off ALL abx after 5 months and started an all natural approach. I also changed my already good diet for a better diet and started working out much more. I'm now 95% functional. Was it the abx, no one will ever know.
I think abx are ok for a period, but I don't believe in all these combos to kill this or that. LLMD's don't even know what they are targeting. It's all a guesing game
BUT ask yourself this. Will you always wonder what could have happened if you didn't take the abx? If so, they try them
I also think you are suffering from what's called Heatlh anixiety. Maybe consider seeing a therapist while on meds. I'm in therapy now and it helped me WAY more than abx did!
posted
I watched my dad die young of "dementia." My brother, his medical power of attorney, REFUSED giving him a Lyme test, even though i was positive and had all the same symptoms...
His reasoning was that "sleeping sickness" and "the crazies" run in our family!!
So I'm the only one being treated... I decided to stick with it if only to STOP mine from going any further.
My son and daughter are positive, but we decided to get them on a good diet and lots of supplements...
of course its a person decision, so go with your gut!
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
quote:Originally posted by Ocean: Thanks guys,
I feel like I have this mental block, it's absurd. I keep thinking of all the people who aren't helped with the drugs. What if I get worse?
Do people who have had this for more than a decade really get helped with oral antibiotics? I know colitis and c-diff are possible complications from Omnicef.
Oh and my husband works from home, so he is here all the time, I know that the firestation/ambulance is 1 mile from our home and the likelihood is very very small of a severe reaction. I gave many babies IV antibiotics when I worked in the NICU (in between relapses) and none ever had a severe reaction, of course they would get thrush and sometimes a yeast rash on their tummies, but nothing life threatening.
Take care, Ocean
Yes I got worse. LLMD says that its not even lyme anymore and its mycoplasma. Tested positive for mycoplasma 6 times.
I realize I am the exception, but Im suffering imenslly none the less.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
quote:Originally posted by lymeHerx001: Antibiotics for me caused irreversible damage.
I cant really blame my LLMD, but I wish I never started taking them to begin with. My quality of life would have been much, much, much better.
This depresses me every day.
I'm worried about starting abx too. Could you please tell us what level of function you have now? I am sorry you have fallen so. JL
Posts: 268 | From new york city | Registered: May 2008
| IP: Logged |
posted
I am petrified of taking meds , and I too use to not think twice about doing other illegal things in my younger days. Not now. Now I won't take anything but advil.
I've had life threatening reactions to meds, and then test neg in allergy testing. Go figure...
I feel your anxiety...I'm supposed to have an endoscopy next week, already put it off, cause I am terrified of the meds. I feel stupid, but after you have been rushed to Er with angiodema, I can't help it. I even tried symbicort a few months ago, cause they thought I had asthma, I don't though, and I actually made myself do it, and really tried to put it out of my mind, and about 40 seconds later I felt paralyzed inside from my waist up. Scared the hell out of me. Which, after reading, it does say that if you don't have asthma it can be fatal. So maybe that's why I reacted, who knows.
Best of luck to you, really.
P.s. Can someone tell me where or what kind of doc tests for mycoplasma? Can a regular family doc do it or what?
thanks
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
| IP: Logged |
For starters, let me first say, knowledge is power, and by being here, your already on the path to recovery. For most people its a combination between trial and error, will power, education and determination.
If you have had the disease for twelve years, I would actually encourage you to think about some other venues first before abx. I believe that with hard work, and some other modalities, ABX should be reserved for a last line, not a first line. (in other words, see if other things work first, but always consult your doctor)
Don't get me wrong, I think its very important that the lyme community have access to these life saving drugs, but also realize that abx are a double edge sword.
There are many things you need to do to get better again. Your path to wellness will not be linear, which is to say, you can't just do one thing and expect results. If it where that simple, there would only be one thread on this message board, or this board wouldn't exist altogether. The number of messages alone is a testiment to the difficulties of this bug.
However, I truely believe that hope is not lost.
Lets start with the panic attacks: Its a learned behavior.
Now I know I might get some pushback on this, and I'm not coming down on you for having them...they are VERY REAL to the person having them. No doubt about that.....but the funny thing is....they aren't real. No one around you is having the same attack, precicely because they are not real.
Panic attacks are a learned behavior through a negative feedback loop over time. You have learned to associate certain stimuli with a negative response. Long story short, Anxiety is very real. Its when we are at a hightened state usually due to stress. The panic attacks CAN be unlearned...(at least I unlearned them)
The most effective system I know of....(not related to this company in ANY way) is anxietybusters.com. Great stuff and worth every dollar in my humble opinion. She works of the above hypothesis.
As for the lyme: The following are the major therapies that have allowed me to get off and stay off ABX for years now.
1. Mhbot 2. Heat Therapy 3. Diet 4. Supplements
Please feel free to write to me direct, and I would be happy to share both my experience and what I have learned. I am not a doctor, and you should always consult one to make an educated decision. However, you will almost always be your own best advocate, and therefore you owe it to yourself to research, research, research.
The only thing that you should take away from posts like mine is that if your not familiar with it, then you need to learn it. That's what I did on this board (great board by the way), I learned what it was that I needed to learn about.
You situation is not hopeless. Keep you spirits high, know that you can achieve wellness, and that with persistance and perserverance....you can dig yourself out. Let me know if I can help, and there are many other great people on this board that can also help point you in the right direction as well.
I agree that other venues need to be explored before subjecting yourself to strong abx treatment. I do believe that your body needs to be as strong as possible to tolerate and benefit from abx therapy.
curious what heat therapy is? I try to bring my body temp up daily by soaking in 104 hot tub as my temp is only at 97.2 since Lyme took hold. I also use mental imagery and find it helps alot!
Ocean, good thoughts for you and your recovery!
Posts: 16 | From finger lakes region new york | Registered: Sep 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I don't agree that anxiety is a learned behavior at least with these TBI's.
Both Ocean and I were well rounded, totally functioning, exhuberant, athletic women, before the big "summer flu" that did not go away.
Anxiety was INSTANTANEOUS, UNPROVOKED, and came along with the *flu*. Something about this illness has altered the chemicals in our brains.
You really are doing a disservice to us by saying that this is a learned behavior. You need only read articles by Dr. Bransfield or Virginia Sherr to see that lyme induced anxiety , depression, psychotic episodes, are a process of the disease and not *learned* behavior.
Ocean, whatever you decide to do, let it be your choice. Your heart will tell you. If you choose abx, choose it now. If you choose alt therapy, choose it now.
the sooner that you start some kind of healing the better. My only sugestion would be that whatever you do, start slowly. After 12 years you probably have quite a load. My own experience says that going full guns at first was very rough. Going slowly now is much better and I am improving.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Peacesoul
Unregistered
posted
quote:Originally posted by BlueAngel: My advice is to ignore it. You have to remember that there is a lot of exaggerating on here. It's sort of like a contest to see who has the worst herx.
bad advice and you made one post on here and you conclude this?
I've been here a while and never witnessed what you're saying No one here is having a contest, we are all struggling to survive.
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Amen Peacesoul!
Posts: 3975 | From usa | Registered: Aug 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wish I could read what others posted for you.
But, was able to read what you posted.
I too was not so sure about taking the abx.
I think what helped me is doing research on it. Learned from long time support group leaders that it was the way to go on the road back to health.
You can get an epi pen or there was something else my doc suggested I had on hand.
So, far, so good. Don't even have what the other thing that was suggested on hand any more.
I also noticed I do much better while taking amitilla from the Cowden Protocol.
It helps with the anxiety and with sleep. I take drops throughout the day.
I would check with LLMD first to make sure you can take it along with other stuff you are taking.
My dog helps with the anxiety too. She usually sleeps near the bottom of the bed.
But when I am not doing well, she curl up right next to me.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
You know, I never, never had a panic attack before Lyme. Also, the only times I had anxiety was when there was a good reason for it (defending thesis in front of 100 people, out late at night, alone walking to car etc)
In fact, I have had times during herxs where I woke up in the middle of the night with a panic attack without even having a bad dream.
So for me the disease is causing these symptoms. I take Klonopin, it really, really helps.
Also, I was like you. I was frightened to take abx. I had had a series of bad reactions to meds. Previous to lyme I had take abx THREE times in 36 years, and I HATED the idea of it.
But, I have had almost no problems with them, only one female yeast infection, and that was from flagyl. And I am on two oral abx, plus bicillin shots 2 x a week. Been on abx for a year and half.
If you are worried about herxes, you can start off at lower doses, and build you way up. Also, if you are worried about having a reaction to teh meds, starting out at a lower dose is better for that too.
Do you live with anyone? Tell them you are worried about starting abx, that will help some too.
hugs - Amanda
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks to all of you for taking the time to write to me. I don't feel so alone now! My husband has no fear of any medication, and tells me just to take it, that I will be fine.
I know I took antibiotics in 2002 after I got a nasty cut and I didn't think twice about it because my Lyme wasn't super active then, so I didn't have anxiety, of course within a year, I had relapsed and was back in the anxiety/tired mode full swing!
I agree with Feelfit that I think this is caused by Lyme. I never had a panic attack until I got my summer flu, and a couple months later was stretching after cross country practice and my heart just took off for no reason. I'd been tired a lot, but wasn't super sick...yet.
Then 2 months later I was sleeping constantly, panic attacks constantly, difficulty swallowing, felt like I couldn't breathe, my mom used to sleep with me at night because I was terrified I wouldn't wake up, became very depressed and I'd never known depression. I would ask my mom to pound on my back until I fell asleep because that was the only way I felt like I could breathe! All of these symptoms just happened out of the blue!
So yes, I need to start something even with the panic attacks. I'm tired of living this way, tired of being tired, tired of all of it. I'm almost 30 years old, I want to have a little of the energy I had before I got sick as a teen. I think I'll fill the script today, pray about it a lot and make a decision and just DO IT!!
Thank you ALL for your responses, I am going to re-read them as well!
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks to all of you for taking the time to write to me. I don't feel so alone now! My husband has no fear of any medication, and tells me just to take it, that I will be fine.
I know I took antibiotics in 2002 after I got a nasty cut and I didn't think twice about it because my Lyme wasn't super active then, so I didn't have anxiety, of course within a year, I had relapsed and was back in the anxiety/tired mode full swing!
I agree with Feelfit that I think this is caused by Lyme. I never had a panic attack until I got my summer flu, and a couple months later was stretching after cross country practice and my heart just took off for no reason. I'd been tired a lot, but wasn't super sick...yet.
Then 2 months later I was sleeping constantly, panic attacks constantly, difficulty swallowing, felt like I couldn't breathe, my mom used to sleep with me at night because I was terrified I wouldn't wake up, became very depressed and I'd never known depression. I would ask my mom to pound on my back until I fell asleep because that was the only way I felt like I could breathe! All of these symptoms just happened out of the blue!
So yes, I need to start something even with the panic attacks. I'm tired of living this way, tired of being tired, tired of all of it. I'm almost 30 years old, I want to have a little of the energy I had before I got sick as a teen. I think I'll fill the script today, pray about it a lot and make a decision and just DO IT!!
Thank you ALL for your responses, I am going to re-read them as well!
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![[Smile]](smile.gif)
), we went through anaphyactic shock in great detail, this is where my fear started. Although my mom has a fear of this as well, called me in August after getting stung, wondering after how long she would be in the clear for having a reaction (she swells locally with stings, but not systemically, so no logical need to worry).
![[Roll Eyes]](rolleyes.gif)
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