posted
I just need a little positive reinforcement right now. I started abx for chronic Lyme, and the herx is starting to set in. EVERY single thing hurts...even my toes. I could use some commisuration! Please!! Thanks!
------------------
Posts: 393 | From Washington, DC | Registered: Jun 2005
| IP: Logged |
posted
Hey there, Jen! Glad you found us! How long ago were you bit? Have you been tested for co-infections? Do you have a good LLMD??
Some LLMD's tell their patients to back off the meds when a herx becomes more than they can handle. Just keep that in mind. I don't know how your LLMD handles this.
You've found a board with alot of great people. We can hold your hand all the way thru this maze!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there you big old pain in the everywhere and everything!
Welcome to Lyme Net!
A herx, huh?
NOT fun.
There are a few things you can do to help the feelings you are having.. but warning.. most don't work.
1. Go out back and dig a deep hole. Bury yourself in it till the herx is over.. then dig yourself back up again.
2. Drink LOTS and LOTS of water.. with a squeeze of fresh lemon .. to help get the system cleared out. The lemon juice helps with the lactic acid removal and muscle pain.
3. Drink some decaf green tea.
4. Take.. only on doctors orders of course.. ibprofen or similar med for the inflammation and pain. It will NOT stop the pain but may help a tiny bit.
5. If it is neurological pain.. some Tei Fu oil rubbed on the painful areas often helps. (I know you'd probably feel as if you need a bath in it at this point... sorry)
6. Keep your mind occupied with anything else.
I paint my toe nails different colors just for fun.
I dump out a bag of potatoes on the floor and name them... put them back in the bag and mix them up.. then try to see if I remember who is who.
And NO.. Lyme tutu, who just posted above, will try to tell you I actually sit on the floor dressing them up as if they were my little kids.. but I REALLY don't.
7. Get out the old photos and sort them and organize them. You may have been meaning to do that... and now is the time.
8. When cooking to feed youself.. make more than you can eat so the left overs can be eaten without having to cook again.
9. Wear a bandana over your eyes if you can't get the house work done. Otherwise you will get more aggrivated and feel worse cause you see the dirt.
10. Watch funny movies. Go to sites with jokes and read them.
And most important.. while you are hurting.. reach out and touch someone else here and help them.
OBVIOUSLY you don't have to have a lot of Lyme knowledge.. by looking at my post above you can see that! So just a kind word or two for others may be just what THEY need to get through their troubles.
And please.. don't let the Lyme win!!!
Don't sit there wondering if you are just getting worse and wondering if the antibiotics aren't working. That happens a lot and is NOT good for you.
I try to remember a "good day" and focus on that.
Keep posting and chatting. We will be here to help.
posted
THANKS SO MUCH!!! I *so* appreciate your kindness and understanding. I know this is the beginning of a long road, so it is nice to get a little "pep" talk.
I think that my tick bite was 9 years ago (vaguely remember dismissing a bulls eye rash, then feeling ill shortly thereafter). I just found a fabulous LLMD who has given me hope that I won't feel sick for another 9 years!!!
------------------
Posts: 393 | From Washington, DC | Registered: Jun 2005
| IP: Logged |
posted
Wow- nine years! I can't even imagine! (but I can, lamentably, imagine all tje things incompetent doctors TOLD you were wrong with you!..) Be ready for a long, rough road ahead. The treatments that work are pretty harsh, but at least there's more hope than with some diseases! As long as you've had Lyme, it is essential that you find a truly "lyme-literate doc". Keep your head above water! Folks here will try to help you do that. DaveS
Wishing you as quick a recovery as possible!
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Welcome! I'm in DC as well and wanted to say hello. There is a wonderful support group in DC if you haven't discovered them yet.
Remember to take it easy and take the time your body needs to rid yourself of toxins. It's ok if you need to use sick time. It's ok not to do the dishes. It's ok to get take-out or order in. A little relaxation can go a far way.
I also recommend making sure you do move while you are herxing to keep your joints and muscles from getting to stiff. Even if it's just slowly rolling your shoulders, making fists, taking a slow walk around the house.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
posted
Thanks for all the information! There's lots here to digest! (now if I could just stop this herx so I could get my appetite back!
Thanks!!!
------------------ Bulls eye rash and symptom onset 6/1996; Lyme+ dx 6/2005; started Marshall Protocol 6/2005
Posts: 393 | From Washington, DC | Registered: Jun 2005
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi docjin The way I look at it is-- every pill I take and every herx I have is one step closer to being well again-- This keeps me Happiley going on-- --Jay---
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I can't blame you for being terrified. I've herxed numerous times, know what to expect and I still dread doing it again. I usually end up stopping ABX because I can't handle the herx. Been in the ER once with herxing.
Check with your doc, but you can often play with dosing and keep your herx at a low roar by backing down your ABX dose a little until you can handle it. You don't have to be a hero, it's ok to baby yourself.
One REALLY good thing is that even though I whimp out nearly every time due to herxing I find I have made huge strides once the herxing smoke clears. I am now in about 95% remission, MOST of the time. Not at the moment, but usually.
posted
Hi docjen, Welcome to LymeNet. As you can see, people here are willing to share what they've learned through experience with Tick-Borne Diseases (TBDs). Most do not have medical training....just "on the job training."
I think Lyme patients should consider "getting well" to be a full time job. Even though most have memory problems, you have to remember to do lots of things during the day. Find ways to be sure you do.
You may have noticed a common thread in the responses..... 1. positive attitude is VERY important 2. sense of humor can not be overdone 3. ask for support when you need it 4. listen when your body talks to you (it's OK to talk back) 5. giving up is NOT an option
We're all in the same boat, & it sure is getting crowded!! You can come here for info, support, or to just whine all you want to. We all take a turn at some time or another.
Tincup - I hope you're real careful when you dump those taters on the floor. You don't want to hurt those little "tater tots". Their mommas have their eyes on you!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
quote:Originally posted by cbb: Tincup - I hope you're real careful when you dump those taters on the floor. You don't want to hurt those little "tater tots". Their mommas have their eyes on you!!
Tincup really DOES dress them up!
------------------ Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express! oops! Lymetutu
cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Hello, Cootiegirl here. So sorry to hear you are feeling lousy. It's no fun feeling sick, but in a weird sort of way, know that you are giving those ketes a run for their money and chasing the darn little buggers out of your body!
I think the others have given you great advice. I think resting and pampering yourself as much as possible when you feel at your worst, is very very important. Just let the meds do their work. Of course keep track of how you feel, if there is a consistency or if there is something out of the ordinary and contact your doc for advice if you see a worsening occurring.
I can't speak too much to herxes cuz I don't (you probably want to slap me about now), but there is hope and this disease can be beaten. I know cuz I'm getting better. I've certainly had my awful sick days, but I just keep reminding myself that it will get better....and with the help of a great doc, lots of rest and great moral support, it does....
Take care and stop by often....I gotta go....I have to see if I can remember my potatoes' names!!!! cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
| IP: Logged |
WildCondor
Unregistered
posted
Welcome! I know how hard the herxing is in the beginning. Remember that it is a good sign, your immune system is fighting and the antibiotics are hittting their target. Stay strong, stay the course, and dont give up!We are here for you if you need to talk or have any questions.
posted
Ok all of you veterans (Lymetoo, tincup, treepatrol) weigh in on this before you follow my advice docjen, but here it is from my old LLMD:
The best way to manage the Herx is 3 fold:
1. Hydration: Drink a minimum of 64 oz. of a fluid with electrolytes.
2. Elimination: It is very important to eliminate the endotoxins caused from the die-off. If you aren't having 2-3 good bowel movements a day, might need to be put on a good binding fiber like Questran, Chitosan, or Pectasol. If the endotoxins are not excreted, they are recycled.
3. Benedryl - The Herx reaction is caused from the immune system being activated. The eosinophils excrete histamine in response to this activation. The release of histimine is what causes many of the symptoms. Benedryl is very safe and is easily cleared by the liver. My old LLMD said take 12.5 mg every 4 hours during the day (the childrens dye free is best) and 25 mg at night for as long as the Herx lasts. I was Herxing BAD and within 1-2 hours my headache and muscle/joint pain felt much better after the Benedryl. I'm telling you it worked for me, BUT I'M NO DOCTOR.
Best of luck to you!
jloisu
[This message has been edited by jloisu (edited 10 July 2005).]
Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
| IP: Logged |
If you do decide to work with those photos Tincup mentioned, please take the time to write in acid free pen on the back the names of all in those photos! We have a sack full of my husband's granddad's photos from England of his family, but NO names or dates!
Good luck with MP as well.
Welcome to this 24/7 educational & support group board!
Some guidelines from Betty/others on using this message board:
* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.
* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.
* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.
* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.
* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
Bettyg, Iowa
Posts: 1 | From US | Registered: Aug 2015
| 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!
How long ago were you bit? Have you been tested for co-infections? Do you have a good LLMD??
oops! 
Printer-friendly view of this topic