Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi everyone,
Well, I am seeing a new LLMD on March 12 and I will be starting antibiotics for the first time to fight Lyme. I hope he will test me for Babesia with a different lab as I was negative with Igenex, but was told I had it from Electrodermal testing and I do have symptoms.
Anyhow...I am scared out of my mind to start abx! My anxiety has improved, however, I have severe anxiety when ingesting new substances into my body. I KNOW this sounds silly, but in 2003 a few months into what I now know was a Lyme relapse (had a couple of years of feeling pretty good, probably 90%), I took a B vitamin complex.
Within 20 minutes all of my joints became very red and hot, knees, elbows, wrists, you name it!
It scared me to death because in nursing school we were going over anaphylaxis reactions in Pathophysiology. I panicked and had my dad drive me to the ER. We waited in the car and it did resolve completely on it's own. I was in a high anxiety state before this happened (one of my symptoms has always been anxiety and panic attacks since I got Lyme), but this took it to another level.
Soon I became fearful of trying new things, lest I should be allergic.
I know that what happened was a Niacin Flush, my 72 year old neighbor told me that she only gets flushing in the joints also.
Growing up, my mom had us on organic food, I had abx once and that was for pnemonia. We never had any medicines. And my mom has a hang up about allergic reactions, only adding to this fear.
Yes I am afraid of herxing too, but almost more afraid of allergic reaction.
Should I go to a psychologist for this? Has anyone else ever had stupid thoughts like this?
My goodness, I gave high doses of antibiotics to 600 gram infants and not one ever had an allergy to any of them! If their tiny, undeveloped bodies can handle them, surely I can!
I have NEVER had a reaction to any food or medicine. I did have a chiropractor (in my search to get well in the late 90's) tell me that I was allergic to pennicillin and never to take it even though I'd had once course with no problems.
Well, I will stop my whining. I just REALLY want to try abx. I have a really good feeling that I can get somewhere with them and with my new doctor.
If you have any words of wisdom or advice, I would really appreciate it.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi Ocean,
I can really empathize with you. I used to have strange reactions when i took antibiotics.
I now think it's because there is a heavy load of infections sitting in the small intestine and the meds hitting them cause a flood of dieoff.
A couple of times when I was very afraid of having a reaction I would actually go and sit in the ER waiting room and take the meds there.
It just made me feel safer initially and then I was able to take them at home. Don't feel foolish about doing this either.
There is something to be said about feeling you are in a safe place. So sorry you are going thru this. This is just an awful disease.
I hope this helps some.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....Really I wouldn't worry too much. Practically everybody on this site has taken abx and I've only seen a few cases of bad reaction and those mostly involved IV. And I've been here ten years.
In fact I've heard of more cases of dangerous events involving alternatives...Marshall protocol for one.
Just think about it...all doxy does is make bacteria vulnerable to your immune system. Yet some almost fanatically avoid it and still swallow benzos and NSAIDS and SSRIs...all of which have documented deleterious mental and physical effects.
I don't get it and I guess I never will. But just reason thru this and you'll be OK. And disregard scary herx stories...not everybody herxes and many of us just have mild ones.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Charlie,
This is not about bashing antibiotics, but Ocean and I have nursing backgrounds and having an adverse reaction is a reality.
You can also have an adverse reaction to herbs or food or lots of things. I was really referring to a herx that scared me silly when I took my first antibiotic.
I was on them for 4 yrs. The point I was trying to make is, her fear feels real to her and if she can feel safe taking her meds at first then that's what she needs to do.
Lets not turn this into an antibiotics vs alternative argument.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Gael...it's more like I'm getting a dig in at irrationality...favoring psychotropics over abx...nothing to do with alternatives really.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
| IP: Logged |
bettyg
Unregistered
posted
ocean,
i can relate in a different manner; i'm claustrophobic since as a young girl, my 3 yr. younger brother than me, accidentally pulled the car trunk down on the 2 of us after we got emptying the trunk of bags of groceries.
we ended up in there between 2-4 hrs. till supper time! mom yelled at us and i yelled out from car's tail light area.
i can't be confined to small areas including elevators!
my suggestions are: psychiatrist or HYNATIST, sp.
IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sissy baby, sissy baby.
Point your finger at the sissy baby.
THAT is what I felt people were saying to me when I had to start a new med ... and they were right about it.. and I still do act like that.
My bet is you can't be as afraid as I am when taking a new med.
I've been through some bad allergic reactions in the past... and I usually live 45 minutes or more by ambulance from the nearest hospital.
NOT fun.
My bet is no reassuring will calm you when you try to swallow that first pill.
Soooooo.. my suggestion is... take it in the morning on a weekday. Have someone with you all day long.
If you don't kick the bucket by night fall, you'll probably be ok.
Also.. get some benedryl to keep in your purse, vehicle and/or home. That is what you'd get at the ER.
You might also .. if far from hospital... and I've done this before, as have others...
Call your local 911 Center. Use their NON-EMERGENCY phone line to make the call.
Tell them you'd like to keep them updated on your home address and tell them you may be prone to having allergic reactions.. and what meds you are on.
They can note this and if you were to need help it can help them find you easier and be more prepared.
Also... keep a note on your door that emergency information is in the freezer. In the freezer... keep a list of your meds, your insurance info, your personal info and your doctor's name and contact info.
If you are skilled and/or if you are a certified Epi-tech... your doc may allow you to get a prescription for an Epi-pen to keep with you.
I've had them before and knock on wood.... have never had to use them.
Another thing to do.
Be sure you have a night light that comes on so your house will light up when someone approaches.
Have your house number CLEARLY displayed out front so it can be seen in daylight OR dark.
An ambulance can't help you if they can't find you.
The light is nice. When I rode ambulance I'd often have to jump out of the door once we FOUND a house.. in the pitch dark.
Several times I've tripped and fallen hard.. no REALLY HARD.. over a driveway bumper or log.. or on a stone path that was uneven... dumping open the emergency box of sterile supplies and dumping them in the dark on the ground.
posted
Ocean, if I'm trying something new that I'm concerned enough about, I simply go to the ER and
tell them I'm going to be testing med out in the waiting room and if I have a problem, then I'll need epi.
That's one way to handle it, and will make you feel safe, provided they understand what's going
on and have agreed to help you immediately if needed.
I only had to go in once for the epi.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi everyone,
Thank you all for responding! You truly are my friends and I really appreciate it.
I have thought of sitting in the ER, and that is what I will do, just in case. Thank-you for suggesting it. I will also tell them what I am doing there so that I can receive emergency help if needed.
Great idea about the Benedryl too! I have never taken it, but I will buy some just in case.
Tincup, I didn't realize you were an EMT! My husband and I were dicsussing them at the hospital last week and how their salary is a crime!! They deserve so much more, every EMT I have met has been superbly professional...wish I could say the same for doc's and nurses!
Gael, makes sense with the heavy infection in the intestine. I just hope I don't herx horribly, I plan to start out very very slowly.
The nice thing is, my husband works from home on his computer. He is here ALL day long! If something should happen to me, he can call 911 immediately and the fire station is approx 1 mile from our house, ambulance would not take long at all.
And yes, I am afraid of different foods too. Silly me had almond butter a month ago and I had missed heartbeats later that day for about 10 seconds straight (it was scary and I checked my pulse after I felt fluttering and short of breath and I could record the missed beat), now I KNOW that the almond butter couldn't have caused it...but I haven't eaten it again since.
Betty, you poor thing!! I am also not fond of tight spaces. My brother did various things to me, from me hiding in a hamper during hide and seek and he sat on it so I couldn't get out to laying on me under the covers so I couldn't move or breathe. I also got stuck in a locker in 4th grade during gymnastics practice. We were all doing it, but someone closed it hard when I was in there. Coaches were getting ready to call the fire department when finally it opened.
I hate elevators =)
I'm just going to have to DO it, I know. I've also considered Hypnosis, but then I might worry about what that is doing to my brain! I don't know how all that works!
I'm glad I can release these fears here without sounding TOO crazy!
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Don't be consumed about a positive test for babesia.
Or any Tick Borne Disease....really.
I had a negative Igenex Fish....was really upset
Until I read it only tests for 2 of the known 13+ strains!
My LLMD diagnosed me with babesia and bartonella based on symptoms.
I like you, was never big on taking medicines.
I like to let my body do it's thing.
However, once I started and added in (and added on),
I quickly adjusted to life on medicines.
They have given me my life back.
My neighbor, a NICU nurse also who has Lyme,
Has never taken meds prior to Lyme either.
I am almost 29 months into treatment.
She is about 24 months.
We've both had negative reactions to mino, levaquin, etc.
While I herxed like crazy on mepron....she didn't.
While I hated rifampin, though didn't herx, she did (big time).
All of our systems are different.
However, none of our systems can erradicate or push Lyme
into remission On their own. We need help one way or the other.
Just start slowly. Very slowly.
I keep benadryl at home.
Have never thought I was having a "severe" allergic reaction.
I only weigh about 105lbs, but take the same type of heavy doses
As many of our other members here.
Have someone with you when you start a new med.
Maybe start with the type of antibiotic you took for pneumonia.
You didn't have an allergic reaction to that, right?
Maybe give you some peace of mind in the beginning.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Geneal,
Thank you for your words and advice!
I re-read my post and I guess I meant I only had abx once as a young kid. I had penicillin at 16 (for root canal after I had chipped my front teeth badly), then the doc put me on doxycyline for mild acne which I took for several months (ironically I was on this, probably 100 mg/day when I got bit!).
Then I had IV and orals when I had my appendix out at 21 and a few months later developed a kidney infection and was put on orals. Then again in 2002 I was on orals after a fall while waitressing and I had a nasty cut/stiches.
Finally I had a shot of 1000 mg Rocephin in 2007 after developing cellulitis from poison ivy. This precipitated my third relapse, I had something really stressful happen and I think it just opened the way!
So I've definitely had a lot of different antibitoics! And never had a reaction. I did get a rash in 2000 when on them for kidney infection, but it was in the same place that I'd had a recurring rash since getting ill in 1996 (with what I now know was Lyme), so I don't beleive it was from antibitoic, it went away in a day.
Good for your weight gain! I am up to about 115 now, gained 10 lbs since Janurary! My mom is much happier when she sees me, I think she thought I was dying or something.
Yes I have spoken with a few people who have never herx'd on meds, but only got better gradually.
I guess I'm more afraid of the fear than anything.
Knowing that the second I swallow that first pill, a wave of panic will most likely ensue.
But you are right. The body cannot handly Lyme on it's own. I've gotten better before (without kids and a husband though, I was 19 and living with my parents because I was so sick, so had someone to care for me!), with diet and alternatives (colloidal silver, colostrum, grapefruit seed extract). But I don't know that I was ever 100%. I'm hoping to get as close to that as possible with abx.
I'm glad the medicine has helped you, and there are others like me who would rather the body heal itself and makes taking anything scary.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ocean,
You got it... the only thing to fear is fear itself!
I've been "doing" Lyme for so many years.. and it has gotten easier to pop that first one after all this time- not good but not quite as traumatic.
Hopefully you won't have to go through this as many years as I did and will find a good solution. I think being prepared was my biggest comfort.
You said.. "Tincup, I didn't realize you were an EMT! My husband and I were dicsussing them at the hospital last week and how their salary is a crime!! They deserve so much more, every EMT I have met has been superbly professional...wish I could say the same for doc's and nurses!"
I have to laugh. You mean they get paid to do that stuff?
I became one when there were no college credits for taking the classes.. bummer too I could have REALLY used them.
Luckily the fire department helped pay for some of the classes (I was a firefighter too- yeah imagine that- a girl) but they didn't pay for the babysitter.
It is nice to see them get paid these days... at least some do.
But like many others in smaller towns and rural counties and wilderness areas, I was a volunteer.
But.... one of the job "perks" was I got to wash and clean out the ambulance after a call! Hey- how many are THAT lucky?
BUT.. it was a very rewarding job...
The 60-65 men I worked with in the last company were very good to me- teased me till I'd cry sometimes .. but when push came to shove they really cared. We were one big family. I do so much miss that and miss them.
When I finally had to stop the job (due to Lyme) it broke my heart.
As for the doctors compared to EMT's.
I agree.
Some day when you have a minute... my bet is your local department would love to get even a post card or email with your kind words.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Good idea, never thought of sending them a thanks for all the work they do!
Wow, that's awesome that you were a volunteer. They practically volunteer still with their salary.... we had 2 guys in nursing school who were EMT's (one was also a firefighter), and when I found out what they got paid...geez! I would become a nurse too, easier, better pay, ect.
I was jealous when in pathophys, they already KNEW the pathways of blood flow in the heart. The pop quiz that my mean instructor gave and everyone failed....well, they passed with FLYING colors! Course I was relapsing with Lyme and pregnant with #2 (I've finally figured out that pregnancy causes relapse for me...hubby is getting 'fixed' soon!).
I miss my job too. I do have days where I am excited and hopeful that I CAN work again.
I can't imagine being an only girl in a job like that! Takes guts!! My husband has a desire to be a volunteer firefighter, but I'm not sure if he can. He is type one diabetic. For that reason, he was never allowed to join the military, but at least being a software engineer, he doesn't have to worry about his blood sugar crashing from exertion!
posted
I was a nurse also, and I think that you have a ton of great advice here from all of these posts!
In an emergency, you know the drill ---
Rule #1: Don't panic!
Fear can do you more harm than anything!
Also, use your medical common sense:
Make sure you have all of your meds, dx, and allergies written down and in your purse, in your husband's wallet, and in your kitchen (refrigerator is where our EMTs look first) should you need assistance
Do not make yourself crazy over other people's herx stories; prepare for the worst and hope for the best.
Just having someone available at all times is a huge stress-reliever.
The ER is always available.
I also am prone to anxiety and panic attacks since my bite.
I had to learn to BREATHE.
(I can also say that, in my own case, being a medical person was the WORST thing
since not only do I have a bad tendency to diagnose myself
but I am also so vigilant of body reactions in treatment.)
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hang in there Ocean.
This disease is scary and unfair. Take it all one step at a time. And try not to think about the "what if's".
I too had never really been sick before Lyme. And I didn't want to have to take medication either. But we have to fight. Lyme is a serious, life threatening disease and it needs to be treated as such.
So, Ocean, you are not alone. You can do this. You will get better!
Sending you a hug:)
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi Sammy,
Thanks so much! How are you doing? Did you get your PICC put in?? Keep me posted and I promise to do the same =)
MissMari,
You are right in that I should know exactly what steps to take for an emergency. Like you, the knowledge works against me. It makes me worry more! I am so glad that my appendix ruptured before I became a nurse, I would have been an AWFUL patient otherwise, doubting many things, although the hospital I went to was pretty negligent.
You are right, the ER is always there. And we have 2 hospitals each about 15 minutes away, Columbus is only one hour if I would need specialized treatment for something.
And I need to keep in mind that reactions are very rare, and the fact that my body has never reacted is a definite plus.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Many people are phobic of pills/meds. It is not an uncommon phobia. You can't help it; you know it isn't necessarily rational, but still it is there.
It gets easier as you take the meds each day and realize you are okay. The risk is, with herxes and die offs and such you are going to struggle with wondering if each new thing is an allergic reaction.
An SSRI to help deal with the anxiety that you can't help but have might be a good idea for a little while to make you more comfortable while you get through this for a while. Why have one more debilitating symptom you don't need?
You were born and bred with this phobia. It was taught to you from Day One. You come by it honestly.
Another idea is to seek out one or two EMDR therapy sessions for the redness/swelling episode. It reproccesses traumas in the brain and will most likely work miraculously well to eradicate that old fear, and should also generalize to help your fear about taking meds in general.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
Ocean, forgot to say that once in awhile the ER checked me in, to be ready with a quicker response if needed.
But usually I sit out in the waiting room. Being at an ER for new med testing is not a bad idea for those of us who are reactive.
TC - my gosh - you have a big background - didn't realize - congrats on everything you were able to do! You must have been pretty strong physically to do that kind of work.
Am wondering if you got bit on the job, or if you know?
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OC..
Thank you for the kind words. It was always my pleasure to be a volunteer. I just LOVED to work. There isn't much I wouldn't try.
And yes, they don't get paid much... it's true.
But they usually get 24 hours on and 48 hours off. Some have other jobs in between to supplement their income. Have to.
But when you love a job... the pay doesn't make the difference.
So glad you have training too. It comes in handy now, doesn't it?
Robin 35937593759
I did LOVE working. I did SO many fun jobs. But no, I wasn't bitten on the job as an EMT or firefighter.
And yes, physically I was very strong back then... had to be when the GUYS wanted to bust your chops all the time and make you prove yourself.... ha!
And that hurts now.. a lot... as some days just lifting a brush up to my head to do my hair hurts so badly I have to stop. I miss the strength I had and ability to exercise and run around.
posted
Gael, great idea to take the meds at the emergency room, after letting them know what you are doing.
This method is sort of a psychological conditioning like they do for stress disorders, as well as a good safety net for possible allergic reactions. Smart girl!
Ocean, glad your hubby is working at home. That's very comforting.
We are all so different. My husband was on IV Rocephin for 4 months with no problem.
I was on it for 5 weeks when I developed drug fever, so will never be able to take it again.
Also, Rocephin can be a problem if you've had it previously. So make sure your doctor knows you've had it before for the cellulitis/poison ivy.
You are a wonderful and strong person. You will do great with the meds. Never feel silly about anything you feel. Feeling are real and a very powerful influence on our lives.
Your fears are just self preservation. Working through them is the challenge, and I know you'll do fine.
Keeping you in prayer.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[lol]](graemlins/lol.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic