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how do you handle going through herxing, ?

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Posted 10/27/2012 12:13 PM (GMT -5)
 

(It was fierce for me last nite.

I got out my digital video camera and taped over some wedding tapes

cause I had no new ones.

I wanted to documenate what I was going thorugh, most of it, me just talking about my journey with this through this.

 

I also annyomonusly rated an old dr. of mine, whom I went to several x when I first got sick. She told me she did not know how to help me.

 

I felt better saying what i needed to say in this format. It angers me she gets paid so much, her children get this comfy great life.  I am suffering everyday, doing my best to get through each second., with ? of how I am going to live the rest of my life, as everything has changed. she told me I was becoming a hypercondriate.

 

I have screamed into pillows. 

 

I have ordered some lyme shirts.  I just want to shout it to the world

that this is messed up.  to go this long, without proper treatment.

To be passed around, etc.  thousands, thousands, thousands of dollars spent over the years, etc.   There needs to be accurate testing and a cure

something needs to be done sooner, etc.  Patients need to be taken seriously.

I feel like a sacrificial lamb, and I am over it.  I want to live my life. I want to do what I use to do, just being how I was, how I intended to be when i came to this painfully unbalanced planet....

 

THis is my new life mission,  lyme advocacy.

 

I hate that this is my life right now.  it at times cripples me.

 

I hate that I have to keep this a secret from my mom and fake it, tell her I am fine, every time she asks. )

was wondering what you guys do when you are an intense herxing experience.

thanks. how u get through it....

Posted 10/27/2012 12:24 PM (GMT -5)
Hi hope2bhealthy,

I know what it's like to hide Lyme from people. I was surprised to hear that you are hiding it from your mom though. Is she not supportive of chronic Lyme?

I tried to hide Lyme for a very long time. Then the people I was hiding it from found out. Everyone had always said to me, "Why are you hiding it? People won't care." Well the truth is, they do. They did exactly what I thought they would. Some, (medical professionals) did everything they could to try to convince me I have something else. Others insinuated I was a hypochondriac. Others would not call or do anything with me anymore. Things change. I understand why you are hiding it, but it would be good to find one friend or family member to confide in for support.

For herxing I used to like to force through doing my normal activities which usually consisted of long distance running. I'd feel better very temporarily because I felt like I accomplished something, but then I would quickly get worse. Lately I have been resting through herxes but I feel completely anxious and unproductive when I do that. So instead of just lying around, I try to research as much as I can to figure out more options for myself.

My go-to's for herxing are alka seltzer gold, the green powder drink mixes that contain chlorella (to bind toxins), lemon water and lots of herbal teas symptomatically (though check for interactions carefully before adding herbs).
Posted 10/27/2012 5:54 PM (GMT -5)
Summer3 has some really great suggestions, but another thing you can try is Benedryl. It's a Central Nervous System (CNS) depressant and so will help all kinds of things. This doesn't work for everyone in every instance though, like most things with these diseases.

If your herx is due to a treatment, then maybe it's time to talk to your doc about slowing down the treatment in some way. Remember herxing is a healing crisis, and the body can't heal when it's in crisis.

In order to help you further, we would need a few specifics of what all is happening, though.

Hang in there Hope2b!! Keep fighting this!
Posted 10/27/2012 6:33 PM (GMT -5)
Traveler...since you are the researcher of the group so to speak...I just read that Benadryl shuts down the immune system and is bad for lyme. I was taking it for the itching from Shingles. What do you know about this and our immune system? anything?
Posted 10/27/2012 7:00 PM (GMT -5)
I have to reply, I am having a brain day, so bare with me. Today I was thinking the very same thing. I am thinking I will never get better. That for the rest of my life I am going to be sick. Also it's easier for me to say I am okay, to admit that I am not. The pain at times is unbearable. Not to mention the herxing. It's pretty bad. I was standing outside today, and I just started crying.. To me this is so unfair for anyone to have to go through, and to know that so many people are suffering just hurts me. The Lyme has taking over every part of my life.

I get the shakes or jerks so bad at work that people steer at me like I am some sort of freak. I was thinking how long will I have to live like this.

I hope you feel better , and that they find a cure for all of us. I am trying to stay positive but it's really hard when everything thing around you has fallen apart. The truth is people that don't have Lyme don't understand, to understand it , you have to live it.


Just me
Posted 10/28/2012 5:53 AM (GMT -5)
Dear Hope2bhealthy,

You are not alone. I have been sick for 2 yrs, 3 months. I was once a vibrant, entergetic, go getter~ I have been to over 20 Dr (I have lost count), 5 trips to the ER and one week hospital stay. I have been told that I was depressed, its in my head, that I am complicated, anorexic, asked what illegal drugs I am taking?!! I have even spent hrs in a Drs office and been asked, Well, what do you think is wrong with you? Insane! I wouldnt wish this on my worst enemy! Two months ago, I tested positive, Lyme Disease, Quant Ab, IgM, results 2.34. I sent up praises, finally a diagnoses and I can begin the healing and get treatment.

My symptom list:

Sensitivty to odors

Shakes when hungry

Increased/decreased appetitie

Food sensitivities

Hair loss

morning stiffness/neck pain

feeling hot/cold

frozen shoulder

carpal tunnel

reduced range of motion

abdominal pain

weigth loss

frequent diareeah

food cravings

IBS

nausea

dropping things

insomnia

changed vision

rashes on body

difficulty swallowing

difficulty falling asleep

racing heart

noise intolerance

increased suseepibility to infections

chest pain

generalizied pain

depression

tingling/numbness

reflux

muscle weakness

fatique

fibrocystic breasts

breast pain

swollen lympth nodes

low grade fever

flu like sypmtoms

muscle twitches

 

I can also hear the disappointment in my Mom and sisters voices when they call to check on me. Sometimes, I just dont answer. I too have lost friends and it defenitely puts a strain on any relationship, finances, and ones ability to work~

 

The last Dr I saw confirmed late Lyme Disease, did some follow up blood work. In the intial consultation he couldnt believe I  hadnt been followed up on. Then, when he couldnt put another diagnoses on me, he too cancelled my follow up appt. I am scheduled to go to Emory Hospital. SCARY! I have to assume with all that I have read that they will follow the CDC guidelines. I pray otherwise. For goodness sake, they are a teaching hospital. I am scheduled for Dec 12th. I have thought of cancelling the appt but I will be out of antibioitcs, Doxy 100 mg 2x daily approximately 2 weeks before I am to go. A part of me feels obligated to go....to reveal what this disease has and is doing to my body. I also expereince herxes, rare good days, mostly horrible days at this point. I too wonder if I will ever get my life back. Thousand and thousands of Dr bills piled up and not sure how they will get paid. I also have an appt w LLMD in Jan, but with no real way of knowing if they are legit?! I have often thought I would have been better being diagnoses w cancer....at least there would be treatment, guidance and support of that illness.

 

I would love to join your fight against Lyme, if I can order one of your t shirts, email me the information. Hang in there and continue to share. You never know when one of us needs confirmation or to simply know we are not alone~

Posted 10/28/2012 7:40 AM (GMT -5)
I to, want to join the fight against lyme. Let us know, anyone with a plan out there to try to get help and more awareness out there I am all in for it.
Posted 10/28/2012 10:21 AM (GMT -5)
yeah, I think I used the word herxing wrong

I am not on medicine yet, just trying to detox, baths,
I dont know what the word for it then is, when it gets incredibly, really, really, really bad, beyond words...

oh I dont have shirts, I ordered from elsewhere in which I wont mention here
I was just saying, that I Have all these emotions re: lymes, and that I almost dont know what to do with these emotions, I want to scream from a mt, top
that things need to change for us. So by getting shirts, that I can wear to a dr. office, it would make me feel a tiny bit better. I have always been into social issues, so I guess part of this is my natural personality. Sometimes, I wear t shirt with sayings to stir the pot, so to speak. :) it makes me either laugh and or feel better. since none of my clothes fit, and I keep getting larger, inflamation and messed up hormones or whatever, Ineed some new clothes.....

love, love, love, u guys, so much gratitue and respect for you guys.
My heros! I am not alone in cyber space.
Posted 10/28/2012 12:04 PM (GMT -5)

flowergal said...
Traveler...since you are the researcher of the group so to speak...I just read that Benadryl shuts down the immune system and is bad for lyme. I was taking it for the itching from Shingles. What do you know about this and our immune system? anything?

LOL! smhair I do hope that this is a good thing!!! Giggle!

So I looked this up so that I wasn't just rattling off dumb stuff - First of all Benedryl is a medicine with real side effects, so never discount the effects that it can have on some people who are sensitive to it. Act accordingly, please!

Okay - disclaimer out of the way! :-)

There is a ton of things on the internet about how antihistamines are bad for you, but they don't seem to be based on anything scientific that I could find.

As for them interfering with the immune system, I didn't find anything like that either.

It interferes with histamine production, and is sometimes used "to treat shaking (tremor) and muscle stiffness caused by Parkinson's disease. It may also be used to treat side effects of certain psychiatric drugs such as involuntary movements and muscle stiffness (such as EPS). It works by blocking acetylcholine." (www.medicinenet.com/diphenhydramine-oral/article.htm)

I have found that it can be a help for me from time to time, but I'm careful to not take it all the time either - that way it'll work when I really need it to!

Of course, as always, anyone who wants to add to that, please do! I'm never the final word on this stuff!! smilewinkgrin
Posted 10/28/2012 12:07 PM (GMT -5)
Hope2b,
You don't have to be taking abx in order to experience a herx - as it's just the natural sequence of the bacteria to die off. It's the fact that these bacteria release toxins when they die that create that healing crisis known as a herx.

So keep on detoxing, drinking lots of lemon water (unless you are having muscle spasms, twitches or cramps) and eating as healthy as you can! You will be able to reduce the amount of toxins in your body by daily detoxing so that your herxing will become less and less.
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