posted
Thank you everyone for answering my first post. I have been in the hospital for the last 3 days for what started as a terrible breathing attack and fast heart rate and I thought I was losing my mind, (Major confusion and neurological stuff).
In the ER, the doctor had me get up and walk around after I settled down a bit, but any movement made me start to get short of breath again. I was breathing out of control like 35-40 breaths per minute. My heartrate was like 120 at rest and jumped to 170 with any walking. My anxiety was also going through the roof all 3 days. I actually felt the anxiety move from my chest into my stomach, it was very weird.
I had every test done including and MRI, Cat Scan of my chest. I saw a cardiologist, a pulmonologist, and infectious disease Dr. and of course a Psychiatrist. They sent me home still out of breath, and with the discharge diagnosis of anxiety. I didn't want to leave as I can't believe anxiety would cause all of this. They did get my Heart rate down with a medicine called Metoprolol and my blood pressure is back to normal.
Still, I can't move much without getting short of breath.
I have read through the symptoms, but this is rediculous. Is this normal ? Did the Tindamax, Bactrim, or Biaxin cause this? Now I'm scared to death to take them. I just got home about an hour ago and I'm still anxious as can be.
Now, I'm really screwed because I have a disability policy from my work and although money isn't my biggest concern right now with all of this going on, they told me I don't qualify for disability under their psychiatric clause. They said they won't take the lyme diagnosis from my LLMD as she is not an infectious disease Dr. The infection disease Dr. I saw said I didn't have Lyme because I had no rash and my bloodwork was all negative, yet I have been able to check off just about every check box I see that is related to babesia and bartonella, plus the aches, pains and fatigue, etc. with the Borelia.. Looking back, I've had this for about a year now. I've been off the meds now for 3 days, and I still feel the confusion. How long does it take to recover from this if it is a Herx ? Is this permanent ? They couldn't find anything wrong with me and treated me like I was a psychiatric patient. I feel so scared and I know I'm not crazy.
Please help me...
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi New2Lyme,
I am so sorry that you have had to go through this! Unfortunately, the whole story that you have shared is very familiar to many here....
Except they hospitalized you, usually one is sent on their way with a Panic or anxiety diagnosis straight from the ER.
I have been to the ER for symptoms like yours (to a T) when I first became ill. I did not know that I had lyme and was worked up for cardio. Everything came out A-ok and anxiety was the diagnosis.
Starting treatment often exacerbates symptoms and sometimes in a huge way. The anxiety stinks. Did you get any anti-anxiety meds. If you feel too awful, talk to your doctor about backing offf your meds till you feel a little better.
You will get better, and I do not believe that what you are experiencing will be permanent.
Unfortunately, many here have been treated like psych patients, it is so sad.
Hang in there, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
They put me on Klonopin 1.5mg and gave me Ativan IV around the clock. Amazingly, I had trouble sleeping and remained antsy most of the time. I'm glad to be home. I knew they couldn't do anymore for me, but part of me felt safe there and the other part just wanted my own bed to lay in. I have Xanax at home so I'm taking 0.5mg as needed now that I'm home on top of the Klonopin. They say you don't need both, but right now, I do.
Please keep the support comming.....
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What you described are all possible side effects of Biaxin.
I can't take it because of this. After taking it 3 days, I couldn't sleep a wink, terrible nervousness, and couldn't eat even a spoonful of food. Reported it to lyme doc and he said it was due to Biaxin. I won't ever take it again.
Hubby also had bad psychological side effects when it was prescribed for him for some other illness (to kill helicobacter). So, these side effects must be fairly common.
My drug book says a possible side effect is psychosis.
So, everybody beware when starting Biaxin.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
OMG, I just looked it up and your so right. Why didn't the infectious disease doctor who saw me in the hospital tell me this...... ?
"Transient CNS events including anxiety, behavioral changes, confusional states, convulsions, depersonalization, disorientation, hallucinations, insomnia, depression, manic behavior, nightmares, psychosis, tinnitus, tremor, and vertigo have been reported during post-marketing surveillance. Events usually resolve with discontinuation of the drug."
Posts: 32 | From DC | Registered: Jan 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Very new..
Welcome! Sorry to hear you were ducked at the hospital. NOT fun and NOT fair.
You said..
"OMG, I just looked it up and your so right. Why didn't the infectious disease doctor who saw me in the hospital tell me this...... ?"
Let me tell you a story about Infectious Disease Ducks.
Actually, I don't have the time it would take.... so I'll just say...
I'd rather shoot myself in the foot than go to a neurologist for Lyme disease... and...
I'd rather shoot myself in both feet than go to an infectious disease duck!
Hang in there and run, don't walk, from the ID duck.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Even if your current LLMD can't write you a note for disability, you need to call and talk to her/him and explain what has happened and then ask for guidance in how to proceed.
Ask about increasing your magnesium supplement and adding B-6 to calm down the agitation symptoms.
the NMDA receptors are too irritated. Magnesium can help bring that down.
Be sure your liver support is in place so that you can move out the toxins.
Toxins can cause all the symptom flares as well.
good luck.
=========
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
posted
very new - less than 50% get a rash, and many do not test positive initially. Some do later, and some not.
Depends on lots of factors, like whether the test tests for the strains we have, whether we're making sufficient antibodies, whether the antibodies are all tied up, etc.
Ther were wrong in what they told you about the testing. There's nothing wrong with you psychologically - these are physical organisms causing physical diseases.
And LLMDs know that. Dr D is both an LLMD and ID.
Keep studying about Lyme and co's. The more we know, the more we can counter whatever they try to say to us.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Just thought I'd share my experience with Biaxin as maybe it will help.
My first couple of months of treatment I was on Biaxin/plaquenil and my symptoms went from bad to an emergency state and I was hospitalized.
Thinking back, in addition to the horrible physical symptoms I had, my anxiety level was through the roof....not a symptom I had prior to Biaxin/plaquenil or after I had moved onto other antibiotics.
I assumed the anxiety was a herxheimer reaction but maybe it was from the biaxin....not sure. At the time I was popping ativan like candy. Haven't needed a single anti-anxiety med since being off of the biaxin/plaq.
Posts: 561 | From mass | Registered: Jul 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
It could have been a side effect of Biaxin or it could have been/be a herx.
The symptoms you described I have had and still do, with the shortness of breath and tacyhcardia (fast pulse) and some anxiety. The lyme has caused these. The tachycardia is the worst and is only controlled by the beta blockers I've had to be on because of it for about two years running. I'm afraid I will be on them permanently as treatment has not helped my tachycardia...
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Join us over on www.lymefriends.com and you will find another great support network.
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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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Biaxin used to keep me awake when it was rx'd for sinus infections. I finally realized it and stopped taking it for them.
Fast forward to after my Lyme dx and my LLMD said it was probably a herx type reaction. He was right. I was on Biaxin long-term last year and no longer have that reaction to Biaxin.
It's something that should improve with tx. Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Let me tell you about my cousin. She went to countless Dr.s, Emergency room visits x4, heart racing, dizziness, etc. etc. and sent home to die, at her old age of 42.
Everything looks great, you must be suffering from anxiety. Let me give you some heart blockers and antidepressants and you will be fine.
She went to the Dentist for her yearly exam and he said. I know a great Endocrinologist who can find out what exactly is wrong with you. I think it is your thyroid.
In disbelief she went and he got her into surgery asap. For a severe case of Graves Disease. He said it would have killed her very soon. Sometimes God does show the way.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I'll add my two cents... get to a good LLMD, one that will write abx prescriptions and start treatment. It may involve Biaxin and other meds. Ive been on Biaxin for the past 7 months and I havent had any reaction like you describe, however, your reactions do sound an awfully lot like neuro lyme herx reactions. Basically the toxins dump into your brains, and away you go off into la la land.
Realize too that anxiety will cause all of the different symptoms you listed, however, if you have all the symptoms, and your LLMD says its lyme, its lyme. Remember lyme is a clinical diagnosis, and not everyone has positive tests come back, especially if this the unreliable elisa a/b from mayo, quest or some other low level lab.
If you are having a reaction to the meds, then its either a true allergic reaction, or, its a herx reaction from kill off.
As for the neurologists, infectious disease people... don't bother. As many will attest, been there, done that, and they aren't worth much if they aren't open minded to lyme or other bacteria, fungal type of infections.
Posts: 514 | From . | Registered: Apr 2008
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