Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Oh man. The last 2 days my right arm was doing better. Now today, it is weak again. I havent had a bicillin shot in a week. How bad can a herx actually get when your only on a shot once a week to once every two weeks?? Am I gonna completely lose the use of my right arm??? Yes, fears of ALS come into play but I push those out. Im just scared again. Hubby won't be back home till next week. Im sure stress is playing a BIG part here too!!!
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Talk about crying!! My LLMD and I talked today. He wants me to quit the IM Bicillin. He's not convinced the muscle weakness is a herx but part of the disease instead. Im not sure I agree but I will continue onward here.
the next step?? We are trying to fight to get IV meds ok'd. That scares me to death!! If I didn't do well on the IM meds, how the heck am I gonna handle the IV meds? If insurance won't cover that, then Ketek is the next step. Im thinking the next step is the "happy place" where Ill get to wear a straight jacket and live in "la la" land. Seriously, IV meds? Scarey.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Nal I know you will work things out,as I gather from your posts, you are strong and intelligent.
Everyone reacts differently to abx and herx's. It is hard to predict how you will be a head of time.
If you are really chronic now and have a high germ load it could get hairy.
It isn't an easy thing to do.probly the hardest thing we all will ever do.But just IMHO ya have to go thru a world of pain to get better..
Maybe your germ load is less now since the pre-Iv treatment.I hope so.I went thru 6 months on IV and it was a living hell the whole time..Thought I was gonna die.But I didn't bump off any of those little b@#$%$ds first.
Didn't die though and am better now because I did.Unfortunately for me the phrase:No pain,no gain" applyed.
You are strong enough to do this. Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
IMO, after 6 yrs of reading and experiencing this darn illness. IV's should be for the ALS, late stage MS, etc. What Dr C calls his worst cases. The people that are need HELP quick or else they will die an early death. Again just my opinion.
Oral abx or combo orals can be just as effective as IV. Just try to find the right combo. Or once you realize you might be an abx failure. Think alternative.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Nal,
I'm somewhat surprised the doc you have is taking you off of the IM.
Unlike this new german doc who seems to think diflucan and pennicillin can have a great effect on lyme.
Don't be too worried about the IV. It's actually a cake walk compared to getting shots in the butt all the time...
One initial stick and a tube inserted and then you have a mainline to your heart for the meds to go to work.
If you get rocephin or ceftriaxone...keep an Eye out for lung issues...I had them...if so follow up with clindamycin or levaquin iv...then go back to either IM or Ketek... You should be pulsing flagyl as well to break up the cystic form the bugs go into when hit with rocephin...
Good luck and don't panic.....I promise it will get better.....from someone who was REALLY bad...zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I don't know why he is taking me off the bicillin. He tells me that the localized weakness (right arm and leg) are not consistent with a herx. I don't see how they couldn't be since it started when I started the meds! Im confused, angry, scared and everything else. I don't want IV meds-they scare me to death. Ive exhausted all other avenues though so I dont know where else to turn.
ive tried almost all the oral antibiotics excepts Ketek and that may have to be the next avenue. Life sucks right now. My kids ask me every day why I am crying. My mood swings are out of control-I explode at everything now!
nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Once upon a time I had a weak right leg and that was virtually the only symptom that remained after some abx therapy.
Once I started herxing, my left leg is the weak one. And when I am stressed (you should see me on the ice and snow!) I can barely lift it at all.
Your LLMD may disagree, but that's how it's been with me.
I am on Ketek, Doryx and Plaq and they are kicking butt. Unfortunately, mine also gets kicked.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Nancy, I can relate so much to what you are going through. We have swapped emails about how similar our symptoms are (right sided weakness). I am here if you want to talk more. I am going to call my doc about the weakness myself because I am not sure if it is a herx...I actually do not think it is. I do know that I did not have arm/hand weakness until I start abx four weeks ago so I have no idea if there is a correlation. I do know that I reduced my dose to once a day and the muscle burning almost went away completely and the jerking/twitching reduced by more than 50%. Please write me a PM if you need to talk. Chin up.
Posts: 331 | From virginia | Registered: Nov 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
quote:Originally posted by Monica: Once upon a time I had a weak right leg and that was virtually the only symptom that remained after some abx therapy.
Once I started herxing, my left leg is the weak one. And when I am stressed (you should see me on the ice and snow!) I can barely lift it at all.
Your LLMD may disagree, but that's how it's been with me.
I am on Ketek, Doryx and Plaq and they are kicking butt. Unfortunately, mine also gets kicked.
Yeah, I don't know that my LLMD necessarily doesnt think I am herxing, but he may feel that I cant handle the bicillin. I do hear that its incredibly rough and causes some god awful herxes. I guess that may be more along his lines of thinking. Hes knows Im stressed to the max right now and that I have 3 young girls at home. I think he feels the IV would be best because he feels the herxes may not be as bad on this type of med based on what he has seen in his patients. Who knows.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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posted
Nal, my goodness if your aren't having a terrible time of this........just wanted to share some of the things so similiar to your arm weakness. I've been on Famvir, T Factor, Arteminin for Epstein Barr, now Doxy for Lyme, two 100 ml daily for now. My right hand, (dominate arm and hand) has been this way for almost 2 1/2 months. I've only had one week break where it wasn't shaking/trembling and absolutely no usage due to weakness of the limb and that was two weeks ago after the major herx for Epstein Barr. Then when the doctor began to ramp me up from one Doxy to two this week it has started all over. In my case, I now feed confident it is the medication creating the die-off of bacteria. I sure hope you get some relief real fast, but, considering my situation and the similarities to your's, it sounds like herxing to me............but, I'm no doctor and do not claim to be, just trying to share my experience with you.
Are you fairly new to the diagnosis of Lyme and is this your firt major tretment process???????? It is for me and it certainly has been the most agonizing time of any health problems I've ever had.........God Bless you, Nal..........Regards, Dalphia.............and, you keep posting for support until this thing lifts for you..........
Posts: 97 | From Tennessee | Registered: Nov 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Nal,
Sorry you have had it so hard. And you have kids to take care of. It is so hard. Oh to be single and close the door and herx. Actually, I have 2 sick kids and I do close the door and herx as they do at times. Oh well.
Listen, I just wanted to encourage you that you have probably knocked out a lot of those bugs. They really go out screaming.
My daughter has had trouble tolerating abx and has done quite a few like for 3 days, then we had to discontinue.
But I was just looking at some photos and she is looks so much better than she did even in August. I believe each pill did a lot even tho it was basically a big mess at the time.
So, it could be that you are moving along more than it seems. I wish it did not have to be so darn torturous.
A prayer going up for best treatment course to become obvious.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Nal, so sorry you're having such a hard time.
Please don't stress over the IV.
I worked myself up pretty good about it in advancce.
I did orals for a while and had some pretty brutal "brain" herxes. Head shrieked around the clock. Could barely find my way home. Fumbled in embarrassment and mortification much of the time trying to seem "OK."
Like you, I thought, 'Oh, man, IV is gonna kill me fer sure.'
However, it turned out to be nothing. The sky did not fall.
It was essentially painless, and really no big deal. Herxing on earlier months of orals was WAY worse.
Now, if you wanna talk pain, flagyl beat me half senseless a couple of months later, but that's another story. :-)
If your doc wants to try IV, don't be scared... Assume the position! Offer up the arm! It might be just the ticket. I'll sure be holding a good thought for you.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
IV was always the treatment I have done best on. Bicillin worked for a short time then down hill. Orals killed my stomach making them impossible to tolerate at high enough levels to be effective.
I've gone through extreme weakness also in fact most of my problems always seemed to affect my right side.
I would go for the iv and see how you do. Have you ever tried any of this therapy before? It is not bad at all getting a line in so give it a try.
It may be rough at first but if given for a long enough period of time might really help you so much.
Also with the line you have to be careful to keep it clean and don't get it wet. A sock top cut off works good to protect it.
You may need to try different antibiotics to find which one helps you most. It is a long road as you know but hang in there.
Best of luck to you.
Posts: 139 | From nj | Registered: Mar 2005
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IV treatment is a walk in the park. It is a lot easier than taking the oral meds. You definitely have to watch out for the yeast infection though. The IV meds go straight into your bloodstream and can cause yeast infection and severe digestive problems. It takes a little time to get use to them. I was on IV for 10 weeks, followed by omnicef and biaxin and now I am on ketek. I am praying that the ketek is going to be the trick. I herxed pretty bad on the biaxin/omnicef mix. He has me just on ketek for a month and we will add the omnicef back in. Don't be afraid of giving yourself or your husband can give you the meds. It is really simple. My 14 year old son helped and so did my 9 year old daughter. You just have to make sure that everyone washes their hands and that they don't touch the end of your pic line once you wipe is off. I will pray that you do well on this. I totally know what you are going through. I know that there will be an end for you and for myself. I am not herxing as bad, but it is still there. You will do just fine.
Janjan Posts: 30 | From warrenton, virginia | Registered: Nov 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
You guys are great-thank you so much for the support!! Im still waiting to hear whether it will be covered or not. Ill let ya all know.
nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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