posted
Hey all, I have been 17 days now on oral doxy. My life has become so small and painful and I need a reality check from people who have been there.
Is it normal during your lyme recovery to be in bed for days on end? When is it time to call my LLMD? Should people in recovery push themselves to excerise and do things/ go places- or does all the sleeping help recovery faster?
Most dibilitating is the headpain, teethpain, nausea. Waking up with headpain like I have menengitis...my hubby and kids are so sad to see me in pain.
When people ask me "how are you today" with all this expectation, I don't know what to say except "the same"- then they are let down.
Any stories of recovery and what is normal, would be so apprecieated.
-------------------- We are spiritual beings on a human journey...
posted
Hang in there...What meds are you taking? How long have you been ill for? Rest when needed, eat healthy...Watch funny movies, stay in a good mood if possible
IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hello,
Rest as much as you need to rest. I am only on my 2nd month of treatment and I can tell you that I have gotten worse. I had to stop abx due to a yeast problem. I think most get worse before they get better.....its a nasty disease.
I get the same questions ...how are you feeling etc, and I always answer truthfully now. I know most want to hear you are improving and one day you will be able to say that you are. From what i hear it takes time, a lot of time.
Hang in there.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hi Dido on cantgice up.REST! Listen to your body.
Drink tons of lemon water.
A teaspoon of olive oil can help with the herx's too.
It is normal to feel worse before you get better.
You are killing kete's and when they die off your body experience's a herx.
You feel worse and can even get symptom's you didn't have before.
If it gets too bad .Yes .Call your LLD.
Hang in there.People do get better all the time.
I wish we didn't have to feel so bad to get better.
But that is sometimes the nature of it.
You will get better but may take soom time.You will back to your art soon.
Hang in there.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Getting significantly worse when beginning meds is usually a sign the meds are working.
I read where Lyme and Syphillis are the only two diseases where the Jarish-Herximer Reaction occur because of a toxic die-off. How much bacteria is in your system and how quickly your body expels the toxic die-off will determine how long it takes to get well.
It is miserable, but it does get better. At my worst, I swelled up like the Michelin Man and felt like hundreds of bees were inside my body stinging me. One night I awoke in so much pain, all I could do was cry out in a high-pitched, monotone voice: "ow,ow,ow,ow,ow,ow,ow". My husband was so upset and asked what could he do? I couldn't put a sentence together. I could only look at him and in the same high-pitched, monotone voice cry "Advil,Advil,Advil,Advil,Advil". sigh....
Now I have just minor swelling in my left wrist and right ankle that doesn't hurt enough to require pain meds. I'm 5 mths into treatment.
Good luck to you!
Do searches based upon your symptoms. It will be reasuring to see where others have gone through the same thing.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
posted
Thanks for the quick feedback. I am taking 300mg/doxy, 200mg neurontin, 50mg zoloft, 200mg ketoprophen, 1 acidophilus-(I hate it), kefir and yogurt, lots of water- tylanol when desperate. I have codiene but am afraid of it.
I'm confused about what to eat and when to eat it. I try to limit carbs but how many eggs can you eat?
For about two years I got what I thought was a crushing migraine with flu like symptoms.This happened for 15 days every month (right after my period)
Then I went to help out in Louisiana -Sept. (huge physical and emotional stress)..then I became ill all the time- with all these new symptoms-light and sound sensitivity, nerve pain hands and feet, confusion, chest pain, severe neck soreness and eyes and jaws exploding.
Don't have a positve test yet--but they have ruled out everyting known to mankind.
This is the strangest disease. Kim
-------------------- We are spiritual beings on a human journey...
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
You're right-- this really is the strangest disease...at least to me, anyway!
I'm in my 7th month of abx after being udx for 9 years. As others said, the symptoms got a lot worse for me before they got better. Even had some new things thrown in the mix, like an inability to drive for awhile, severe headaches and (most troubling) several bouts of paralysis.
I think this is different for everyone, but for me, pushing things didn't make them any better. That said, I did continue working (at least on a part time basis), and that has been really invaluable, psychologically and financially.
I've had very few days of being "down" and bedridden, though I have spent more than I like to think about just sitting, feeling too sick to even read. And even more days when taking out the trash just about did it for me, in terms of energy.
I think it really is hard for the people who love us to see us in this kind of pain. A few of my friendships haven't survived my being sick, though my primary relationship and relationships with my family have all grown significantly stronger.
Good to remember, too, that this is a long haul -- longer for some than for others. I didn't realize that I kept unconsciously setting recovery goals for myself: I think I'll be able to _____ in 2 weeks./months. That turned out to be a cruel set-up for myself.
Boston's got the best solution -- watch funny movies and to your best to stay grateful and upbeat.
This is a great place to come to talk with people who understand...
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
sounds like you are kicking some seriuos ketes butts.Die kete B@#$%^ds!!
You may want to do a search here on detox.It really does help.
As far as food goes do a search here as their are reams of posts on this topic
These are a few of my favorite things:
Chicken
Veggies:green beans,asparagu,sqaush,dark green sald leaves with ceaser salad dressing
Chic soup ,boiled with 20 cloves of garlic & three onions
Arichoke hearts(canned) (my fav) You can suate them in oilve oil & garlic or eat them right out of the can sprinkle lemon & olive oil.Or pour sag. sause over them.
oatmeal
corn chips with melted cheese & sour cream & black olives.(if you are not lactose in tolerant)
on occation sweet potatoes(but only a small half) Black olives.I eat tons of these as snacks.
Almonds
Almond butter
Just eat good healthy food,nothing processed.
Take good care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
posted
hang in there, sorry to hear that the ketes are kicking your butt so bad. i am really new on this site and dont have anything super smart to say but all i can say as far as advice, is the word PATIENCE!!!!!!!! when i first got sick i thought 3 weeks of meds and i was done, when that did not work i wanted concrete answers, when that did not work a person dear in my life said patience. i have finally realized we are all different, in sickness, recovery, etc. be patient and know that you are strong and can get through this, it can be a head game for sure but listen to you body, if it says sleep than sleep and so on. i have been ill what most here would consider a short time, 7 months, caught the tick early and everything, but i know now that i will lick this tick, and for me my thinking positive is not only the hardest thing to do but the best for me, good luck and hang in there, slow and steady,
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
| IP: Logged |
If it helps, know you aren't alone. Hearing you mention the teethpain, and head pain make me feel not alone. Been on tetracycline 20 days and flagyl 3 days...and it's been one big heap of misery the past few days. What is with this ear and teeth pain, not to mention brain pain,eh?
Don't have the nausea thank god. You might try milk thistle 2-3 times/day to help the liver with the detox.
wishing you (and me!) a good night,and better days--
Posts: 211 | From NC | Registered: Dec 2005
| IP: Logged |
posted
In August/September I was where you are now. All your symptoms bring back such awful memories...
I've been on abx for 3 mos now (w/one month off to detox from a toxic liver) and I'm doing much better, although not well. Now I'm able to work part time. I'm not so fatigued that I feel I have to sleep in the afternoon every day anymore, but I was there. As long as you need it, just take it. I can drive my car again. I can shop, and I can cook.
I can't exercise as much as I'd like. I still have days where I ache, my eyes droop, my brain tells me to keep my eyes closed and not think, and I don't feel like getting out of bed until 9 or 10 am, so I don't (I'd always been the type that was up by 6:30am.)
The abx will start getting you healthy, but it's a process. Do things as you can. Don't try to push it too much. The first time I tried to exercise just minimally, I was wiped out for the next 3 days, just trying to recover. But the next time I tried exercising the same amount, I felt a little better while doing it, and then was wiped out for only 1-2 days afterwards...so that was an improvement. And that's the way it's gone for me.
I noticed that you're taking kefir and yogurt, but be sure to allow some time between eating them and taking your doxycycline. The calcium in dairy products can interfere w/the action of doxy, so you need to put some time between when you take them, but you probably know this already.
Hang in there. You'll get better.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
| IP: Logged |
This link "But You Look Good" was posted in November to try to explain the feelings of chronically ill persons. You may find it comforting to read, as I did.
posted
Love and empathy sent your way!! I am on IV rocephin and drink every hr. water with lemon/ water and cherry juice etc.During day find water must clear it out by 9pm the pressure in head is so bad it is frightening! Then teeth hurt numbness by ears if I sleep I am woken up by PICC cath in arm sore, sweats, nightmares!!!! (anyone else have these?) head feels like brain swollen hitting cranium! Tonight I am trying to set alarm to wake up every 3hrs. to drink fluids maybe that will help..I stay awake till my eyes drop..due to fear of another night of herx.I have just started tx.Any helpful hints appreciated! I do feel it will be worth it!xokim
Posts: 21 | From Alexandria,Va | Registered: Jan 2006
| IP: Logged |
posted
I have heard that it takes days, weeks, months, years--- it all depends on the person. I understand it is all variable, according to what I have learned, on the person age, sex, immunity status, coinfections, bacterial load, severity of strain ( straighten me out if I am wrong!) so that there is no set answer to your question. I had lyme with coinfections about a year, asymptomatic, before the hammer hit me. I have intense neuro problems ranging from hyperintensive signal MRI flares, to eyes, to complete body numbness. I herx because I am breathing.( Bicillin and the Ivs I herxed so bad that I used a hospital wash pan in bed or crawled to the bathroom to void!) I couldn't get out of bed for 10 months- the vertigo, falling, and everything. Hang in there- right now, I had to come off abtxs for elevated LFTs. I am using oil of oregano, noni juice, and trying a group of herbals , Looking into sea salt and cofee enema protocols to detox. Now I can:get out of bed now, feed cats, do 1 or 2 loads of laundry to help Mom, can sit in car to go out with parents to do errands, set dinner table, use the computer a little with very bright light, do a couple of sudoko puzzles a day and still see the TV a bit. All I can tell you is keep trying; anything can happen with this disease and anything is possible. It is a far cry from who I was, but I won't give in. Never give up. Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
I'm just a little further down the road than you and have started to see the light.
Been on abx since august 05 and have gotten some brain function back. Energy isn't much better but like everyone else here, I've learned rest is very important.
I was always one who would push myself beyond exhaustion. That only got me sick and I'm leaving those habits behind. I don't have to sleep all the time like before and rarely nap in the afternoon either. BUT, I lay down all day long when I need to.
work a bit, rest a bit, stretch a bit, rest a bit. This works best for me, keeps the blood moving but doesn't tire me out.
I start cooking dinner early in the day. Chop things, rest, cook some more, rest. Heck my 70 year old in laws run circles around me!
Also, in my handouts from my LLMD, he said liquid pediatric benadryl can ease a herx so I keep a bottle around to sip.
I also watch lots of old, goofy sitcoms and light TV. Laughing is good.
Best of luck, it all gets better. You are doing the hard part now. Posts: 460 | From Illinois | Registered: Aug 2005
| IP: Logged |
posted
Wow, this thread is back. Funny how this chat stuff works.
It is great to hear such warm, kind posts.As ususal, you are all right. I am slightly better now two weeks later-but a slid back bad when biaxin was added last week. Horrible intensification of symptoms - I was going to quit the Biaxin but stuck with it, per everyones advice.
Well I am still taking the doxy ad biaxin and although not well, I do feel better for more hours a day.
The toughest part for me is the patience required and amount of pain we must endure for lengthy periods of time - alone.
At least I am no so afraid anymore. With knoweldge of the disease comes less fear. Let's take it one hour at a time. Kim
"I am no longer afraid of storms for I am learning to sail my ships..." forgot author
-------------------- We are spiritual beings on a human journey...
posted
Benadryl can help with a herx- but must be careful as active ingredient is diphenahydramine and can elevate intraoccular pressure, a concern with glaucoma, or if your pressure is elevated or you are having other eye problems from TBD as I am having. I would say check with your doc first.
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
quote:Originally posted by humanbeing: 1 acidophilus-(I hate it), kefir and yogurt
You hate acidophilus??? What's to hate? It will protect you from getting a horrible systemic yeast problem. Sooner or later you WILL get one, and you will really wish you'd been watching your diet and taking tons of ACD.
Also, be careful about yogurt and kefir. They can be loaded with sugar unless you're making your own.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Hi Humanbeing, I'm writing to you from my ski trip! Yesterday I flew on a plane & carried heavybags. Today I skied all day and then went out to dinner. I also took tetracycline, drank lots of water, soaked in Epsom salts, rested after skiing, took probiotics & used podi-patches. I packed food for the trip and stuck to my anti yeast diet.
One year ago I could barely lift my arms. I spent most of each day on the sofa staring into space. I had horrible pain and my brain was in a fog. I was thinking aboout closing my business.
So, there is hope. My opinion is that it is not a good idea to push with this disease. I did only what I was able to do and cut out all the rest. As I started to feel better I added activities and exercise back in very slowly.
I've learned that I need to do many things to get better and even now when I'm feeling pretty good I need to keep up the detox, special diet etc. or symptoms start to come back. All the info is here on LymeNet.
Be patient and allow your body the rest it needs.
Hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
| IP: Logged |
posted
hats, thank you for posting. It's so wonderful and encouraging to hear of someone doing so much better in the course of a year. I'm thrilled for you.
Please keep improving, and come back again to share and continue encouraging us.
Love,
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hats,
Your post absolutely made my day!
Dana, I also wanted to let you know that ever since you posted it, I've been sauteeing arthchoke hearts in olive oil then sprinkling htem with parmesan cheese.
Delicious
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
posted
hats, You go girl! love to hear stories of recovery...really keeps me going here in painville.
me too, I hate acidophilus because it gives me cramps in my gut. I don't know why...I do continue to take it however with food (2-3 capsules a day spread over the day)
I only eat plain fat free yougur and the kefir is added to that to total about 1 cup. I buy it at the health food store and it tastes really bad so I don't think it has sugar..but will check.
I don't eat any starch food anymore. Only about a pinch of sugar in my half cup of coffee everyday. (don't be mad it helps me feel like a normal person and go number 2)
My diet is all about protien and leafy green veggies. Organic oat bran in the morning. Almonds to snack on. Thats it.
I am doing my best. Just experienced a relapse since I overdid things for a day (during my period).
Feeling better this morning though.
Thanks all for your ongoing support, I don't know how I would do with out you.
-------------------- We are spiritual beings on a human journey...
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I once was where many of you still are or where. I was paralyzed on the left side and lived in a brainfog and the pain seemed never ending and cruel.
I am perfectly well now and have been for a few years.
Have patience and learn all you can.
I have basically given up posting here. But you will find many of my posts.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
posted
Thank you Gigi...I wonder if people like you who are on the other side of this worry about a relapse? I often think that I may do all this hard work at healing only to fall down harder...
Is this true for most or do most healed lymies go on to lifetimes of health?
Also, do you take any abx for prevention? Thanks, KIm
-------------------- We are spiritual beings on a human journey...
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!
![[group hug]](graemlins/grouphug.gif)
![[Eek!]](eek.gif)
![[Embarrassed]](redface.gif)
![[Smile]](smile.gif)
![[hi]](graemlins/hi.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic