merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I called my LLMD about 8 days ago to schedule an appointment and get a refill of my meds to get me to the appointment.
Long story short, my LLMD ants me off abx until my appointment which will be 2.5 weeks.
On day 2 off abx, I started to get a really sore stiff neck ( alot more than usual) and a headache that lasted 3 days straight.
I also noticed that I started twitching quite a bit all over.
I have had a chronic fever that for the last few months has been 99.6 or so. The last few days it has been 100.5 or so.
I feel rotten. My paplations and tachycardia are back. I have the sweats. I am so fatigued and have no strength.
The other thing that has me alarmed ismy cognitive abilities. Typing this message has been really hard. I can spell or type like I used to. I have corrected my spelling and typing a few times in this message.
I called my LLMD and left a message saying I wasnt doing well of abx and wanted to know if I should go back on something until my appointment, I wasnt able to tell them everything that was going on because it was an answering machine.\\\
I got a message back saying that my LLMD wants me to tough it out until my appointment in a week.
I dont understand why my llmd would want me to do this. I feel rotten. I feel like I did 16 months ago when I first got sick. I am at square 1 again!
I just can't believe that I am so sick so soon after stopping abx.
what do you guys think about the neuro problems?
I just cant believe it
Thanks, Melissa
Posts: 3905 | From USA | Registered: May 2007
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
I had some symptoms return when I stopped antibiotics a month ago but it took a few weeks. They have resolved.
I would call back and insist to speak to the doctor at the end of his day so he can here from YOU what you are going through and then see if he still wants you to tough it out.
At least find out his reasoning for wanting you to do that.
Hope you get some answers soon. Posts: 1129 | From Maine | Registered: Feb 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Melissa, I'm sorry you're feeling so bad.
You could be feeling all your are from toxins. I didn't believe this until I have experienced this recently. Perhaps your body is taking the opportunity to detox now while you're not adding to the toxic load with dead bugs.
Drink lots of water. Take a binding agent. Eat simply including lots of fiber. Be sure your bowels are moving at least a couple times per day, take magnesium if they are not.
This toxin problem I'm having from the mold is as bad and Lyme and co's. It could be from the toxins for you. That could be why it came back so quickly.
It's "only" a week. You know that in Lyme treatment that is nothing. Take advantage of your time to detox.
Hang in there!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Melissa,
I've read that if your sx come back so quickly after stopping abx it is a co-infection? Are you going after anything else besides Lyme?
I'm sorry that you feel so awful. My neuro stuff varies from day to day even on abx, so I really haven't an answer for you.
Chin up kiddo! I hope that someone else is of more help than I have been.
feelfit Posts: 3975 | From usa | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Feelfit, that is what the PA at my LLMD's office told me. Babs can come back in a few days time, Lyme cannot.
My babs symptoms came roaring back recently with my toxic mold experience. I'm off all meds and detoxing alone right now until my toxic load lowers. My babs symptoms (and other symptoms as merrygirl is describing) are diminishing not increasing with this detox.
It could be co's .... but it could be toxins.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Sorry merry....
I'm sure I have asked you this a million times on Lymechat but I can't remember: what were you on before you stopped?
Were you feeling better on that? Why does your LLMD want to switch your meds?
Sorry you are feeling so rotten. Hang in there.
Posts: 4590 | From Midwest | Registered: Jun 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I was on Rifampin and Zith. Now that I am off it I do think that iyt was working, but when I was on it I felt like it wasnt doing much.
Posts: 3905 | From USA | Registered: May 2007
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I would call back and ask to speak to your LLMD. I don't understand why he wants you to stop meds in the middle of your treatment?????
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Oh, I'm soooo sorry you are feeling so crappy! I'm sure he just figured he would wait until he saw you since it was only a week, to have a chance to fully evaluate how you are doing and proceed from there.
But I am also sure he doesn't realize how awful you are feeling! Definitely call back!
I hope six is right, her explanation sounds plausable.
It really does sound like Babs though. Very much so. Maybe one good thing will come of this; maybe getting a chance to see your symptoms full force like this will give him a better idea of what to do next
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
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i had to stop because i got so toxic and the side effects from levaquin...
took weeks of detoxing. i'm just now starting to get back to some sort of normal...
i'd call him tho just to make sure you understand his rationale....but i've been told stopping and starting is not good.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I am too new at this to have any advice but wanted to chime in with a for you.
Saying prayers you'll find your way through this soon. Grannie
Posts: 67 | From the state of Lyme | Registered: Sep 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
merry,
I feel this way about my Amoxicillin. I herxed the first couple months as I was increasing the dose, than it was sort of like.....maybe I'm a little better, but I dunno. Then, I stopped really noticing the improvement.
When I stop taking it, I feel worse.
I think it's basically just a sign that while this treatment of Rifampin and Zithromax makes you feel "better"....it is not the ultimate "answer."
I am currently on the Amox, but that is only because it isn't "hurting" me, and it can be combined with basically anything.
If you weren't fully well on Riampin/Zith, you know you need something else. And, you may have to sacrifice being off Rifampin/Zith if they don't combine well with other meds, like my Amoxy does.
It is hard to go off something you like, but you know it needs to be done because the goal is to not be on these drugs forever, right? I hope you find something that helps you reach an even higher level of health.
You can always go back on Rifampin/Zithro later. In the mean time.....dunno if not being on anything for a couple weeks will hurt you, but maybe once you start taking abx again it won't really matter. Wish I could give better advice on that.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I also think I remember my LLMD telling me that you can't go on and off rifampin. It is some sort of allergy/intolerance. It's not an allergy like anaphalaxis to penicillin, but worse and might cause liver damage or something. I can't remember the details.
I think he said there was a blood test you can take before re-starting rifampin to be sure you can tolerate it.
So, maybe that's another reason for not refilling the script after you stopped.
Of course I don't know the reason, just thinking...
You take care of yourself!
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
I'm sorry but I just think it's awful to be told to wait for abx until your appt. I'm switching docs and my old doc gave me 5 days' worth of abx to bridge me. I think your deal bites... Hope I am wrong.
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
it has only always taking a few days off abx for me to get alot sicker.
I would call back to the office and emphasize how much worse you are (and still getting sicker)... and question why he wants to let you get a whole another week of worse.
Sorry it has been so rough merrygirl ... I hope your dr can figure something out to help you feel better soon.
posted
I think it sounds like both Bart and Babs have come roaring back.
Don't know how long you were on the Rifampin/Zith, but if it was less than 4 or maybe even less than 6 months then either Bart or Babs would still be there.
At hubby's LLMD appointment this week the doc reconfirmed that either Bart or Babs needs a minimum of 4 -6 months continuous treatment.
Hubby has had to reduce his Rifampin dose from 600 mg to 450 mg, but the doc wants him to continue on it if possible (has to do bloodwork every 2 weeks to monitor WBC).
Hubby's first antibiotic was IV Rocephin -- he improved maybe 25% initially and within a few days of stopping the Rocephin started losing ground again. The Dr B told us it was because of the undiagnosed and untreated Bart.
Were you also on Mepron or something else for Babs? Just Zith by itself will not get Babs.
Sorry you are feeling so rotten. And yes, I would call the doc again if it was me.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm sorry you're having such a tough time. I've been there myself too many times.
It gets harder & harder to take each time the relapses hit.
It sounds to me like exactly what Dr. Burrascano describes in Bartonella: a clinician's viewpoint.
Copy & paste this link to your media player or browser: rtsp://ldarm.webcastcenter.com/lda/lda_burrascano2005.rm
If memory serves me it's on page 23 of his guidelines.
Also if it's of any comfort, I read in "Cure Unknown" that seems to have cured his own Lyme by allowing himself to go off ABX into deep relapse & then treat again, I believe it was 3 times.
Knowing that helped me stop panicking so much when my LLMD recently had me off them. Don't get me wrong, I still panicked, but that knowledge did give me a little comfort.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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