posted
I got diagnosed with lyme by using the western blot and having IGB positive titer back at the end of sept. The LLD thinks I have had it for a while and it was dormant until I had my son and the changed in hormones brouht it out. I was on antibiotics for a few months amoxicillian for 3 months and have to admit did not take my full 1500 mg dosage everyday but I was feeling good symtom free so I tapered off the meds. Then I got the eye twitching and same joint pains and a new symptom of right hand being numb. First I thought I slept on it wrong but days/weeks past and it still remained. Gave the LLD an update and he said continue taking the meds. I have been back on the full dose amox since the first of Feb, my hand numbness then spread to my other hand and feet. I haven't slept in over a month it just kept me up. Then the numbness went away pretty much completely however now I have the worst symptom - I am getting these horrible what I think may be anxiety attacks. I feel this unbelievable overwhelming nervous sensation which is ongoing during the day but gets unbearable right around dinner time to bedtime. Then can't sleep. I have never had anxiety or depression ever, I am getting so worried that I am going crazy. I have tried to talk to my husband but the feeling is so hard to explain. I don't know if this is part of the amox as a side effect, possible herx effect, just part of the lyme or am I really going crazy and will never be the same. MY LLD does not answer the phone line he makes you fax an update and then his nurse calls back. I will try faxing him but I feel like everyday it is something new and they jsut say, this sounds normal continue on the meds. I am so scared-these feelings/anxiety have been ongoing for about a week now but feels like years. I have a 1 and 2 yr old and I am worriedI will never be the same mother to them again. Has anyone else had these psychological symptoms with lyme.
Posts: 3 | From Massachusetts | Registered: Jun 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Splitting up the above post so all can read it:
I got diagnosed with lyme by using the western blot and having IGB positive titer back at the end of sept. The LLD thinks I have had it for a while and it was dormant until I had my son and the changed in hormones brouht it out.
I was on antibiotics for a few months amoxicillian for 3 months and have to admit did not take my full 1500 mg dosage everyday but I was feeling good symtom free so I tapered off the meds.
Then I got the eye twitching and same joint pains and a new symptom of right hand being numb. First I thought I slept on it wrong but days/weeks past and it still remained.
Gave the LLD an update and he said continue taking the meds. I have been back on the full dose amox since the first of Feb, my hand numbness then spread to my other hand and feet. I haven't slept in over a month it just kept me up.
Then the numbness went away pretty much completely however now I have the worst symptom - I am getting these horrible what I think may be anxiety attacks. I feel this unbelievable overwhelming nervous sensation which is ongoing during the day but gets unbearable right around dinner time to bedtime. Then can't sleep.
I have never had anxiety or depression ever, I am getting so worried that I am going crazy. I have tried to talk to my husband but the feeling is so hard to explain. I don't know if this is part of the amox as a side effect, possible herx effect, just part of the lyme or am I really going crazy and will never be the same.
MY LLD does not answer the phone line he makes you fax an update and then his nurse calls back. I will try faxing him but I feel like everyday it is something new and they jsut say, this sounds normal continue on the meds.
I am so scared-these feelings/anxiety have been ongoing for about a week now but feels like years. I have a 1 and 2 yr old and I am worriedI will never be the same mother to them again. Has anyone else had these psychological symptoms with lyme.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Lyme anxiety is probably the most common lyme symptom. It is a horrible symptom. I had it for a number of years.
Most people have to take an anti-anxiety med to deal with this terrible level of anxiety. I took xanax for years when I had lyme.
Either your lyme doc will give you something or your primary care doc.
Don't worry that you will never be the same again. You will.
I had undiagnosed lyme for 10 years before a doctor figured out what was wrong with me. I was taking that xanax for terrible anxiety that my docs and I thought was from menopause.
Lyme did stop my estrogen production and I had to go on hormone replacement therapy. So, just to let you know that lyme can make all of your hormones go out of whack and that may be how it causes anxiety in so many of us.
Also, my lyme doc says that lyme affects the sleep center of the brain and this is why our sleep is so disrupted. Another really terrible symptom.
Anyway, I completed my lyme treatment 6 years ago and I am still symptom free, enjoying my life.
Good lyme treatment got my ovaries working again, I got off the hormone replacement, I didn't need anxiety meds anymore, and every single symptom--every one--went away. I am back to the person I was.
Look on page 9 of the Burrascano lyme treatment guidelines and you will see where he lists "anxiety, panic attacks" as a lyme symptom.
My anxiety caused a real white knuckle ride. Don't try to deal with it. Get some help. That's my advice.
Also, I have to comment on your lyme medications. If all you are on is 1500 mg of amoxicillin per day, that is totally inadequate treatment.
That is the exact same way my second lyme doc treated me, and I was unable to get well on that one med alone.
Please read the Burrascano Guidelines cited about and see that it takes combinations of meds to attack lyme disease in a way that will erradicate it.
Also, you needed tested for lyme coinfections at your first appointment. Generally, the tick bite that gave you lyme also gave you a number of other infections--like babesiosis, bartonella, ehrlichia, etc. This is one of the major points of the Burrascano Guidelines.
I wasted 2 YEARS with a doc who had me on 1,500 mg of amoxi 3 TIMES PER DAY for a total of 4,500 mg or 4.5 grams per day (with probinecid, to keep the amoxi in the bloodstream longer). If I ever tried to stop my meds, within 2 weeks I was back to square one, sick as a dog in bed.
Then, I switched to a doc who followed Burrascano's protocol. At the first visit he sent my blood to Igenex in Calif and found I had babesiosis and bartonella also. No wonder just amoxi was never curing me.
He also added flagyl to my amoxi so that the lyme could not evade the amoxi. (It does that very easily by switching into a cyst form that amoxi can't kill.) I really started killing lyme when the flagyl was added.
Honey, don't waste any more time. If your doc has not tested you for coinfections and has not discussed treating you for coinfections, and if he does not shortly add any more antibiotics and higher doses to your protocol, then it is time to switch doctors.
I stick around this site just to help people whose doctors don't know enough to get them well. I don't want to see others waste years taking meds like I did. Educate yourself now by reading Burrascano.
If your doc doesn't measure up, call lyme support groups (see left side of page, Support Groups) or post here to find a doc who follows Burrascano.
The doc is the key to getting rid of this disease. I can't stress that enough. One med is called "monotherapy" and everyone on this site can tell you that it will never get rid of lyme or the other infections the tick most likely gave you.
In my state, everyone with lyme has babesiosis and bartonella also. Each of these diseases requires different meds to get rid of them. Amoxi is just for the spirochete form of lyme. Only a novice would give a lyme patient just amoxi. And, your dosage is laughable.
I am sorry to have to tell you this. But, it is going to save you months and years of trying unsuccessfully to get rid of your disease.
I send everyone in my area to 2 docs who follow the Burrascano protocol, and all of my friends have gotten rid of their diseases.
So, educate yourself and decide if what I am saying is true.
Please know that Dr. Burrascano is the foremost lyme disease pioneer in the world and he practiced medicine on Long Island for years, very successfully treating thousands of people for lyme.
His fame spread far and wide and people came to him from all over the world. He wrote his Guidelines for doctors, and doctors all over the world are now following them and successfully treating lyme.
His Guidelines are the most important document you can read to get an education on the disease you now have. This is one complex disease.
Many doctors treat lyme disease, but not many know enough to get rid of it for a person. That is the most important statement you can hear.
We will help you here all that we can. Ask questions, and we will answer. The Medical Questions forum is the best place for questions. You will get lots of replies.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
TF gave you great advice. I hope you follow it.
One more word of caution. Sometimes children are given lyme by their mothers, during pregnancy, so you should be aware if they show any symptoms. That is another good reason to change doctors.
As far as co-infections go, Bartonella causes anxiety and insomnia. Antibiotics are specific for each infection so when you treat one infection, the other infections tend to emerge and take over.
Taking only amoxi could drive your lyme into the cyst form and allow something like bartonella (which is not affected by the amoxi) to come out.
This makes treatment very confusing as you might believe the medication is not working, you are in non-stop herxing, or that you don't even have lyme.
You should be symptom free before quitting abx.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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chiquita incognita
Unregistered
posted
Xanax caution: It can be addictive. I had a problem when I withdrew from it years ago, it caused terrible agitation, shakes et al. It' s only recommended for short-term but not longterm use (as i understand it, as a patient. I am not a doctor, so be sure to ask your doc about this).
I myself did very well on Zoloft, with no withdrawal symptoms or side effects, at least in my case.
You could be herxing, could have low blood sugar, and also be having panic attacks. This comes from adrenal gland imbalance. YOu could do a subject search about it here:
This is not a diagnosis, only a question. YOu "Could be" is how I am stating it. I say that very carefully because so many things can mimic different disorders, and how do we know? We don't, we are not doctors.
That's where reporting to your doc is important. I sure understand your frustration given the office conditions that you describe, however.
Careful. We lay people can only share our own experience, but we cannot diagnose. It could be very misleading. Or it could be very accurate too, based on experience. Who knows?
All you can do is "give it a shot" but stay in touch with your doctor, s/he has the final say.
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posted
Yes it is. Experiencing it right now for the first time in months. Debillitating and feel exactly like you do. Find a good LLMD and stay on ABX at least 3 months after you feel well.
Posts: 239 | From NC | Registered: Aug 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Anxiety is a common symptom of Bartonella too..have you treated co-infections?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I had terrible anxiety and flat out "rage". I was angry all the time and honestly not a very pleasant person to be around.
Treating for Bart has been a tremendous help for me. I don't like taking all these med's, BUT they are helping.
My anxiety level was nearly unbearable...to the point that I could no longer function at work. Now, after 9 months of treatment for Bart and Lyme (I did take a 3 month break from meds)
posted
Oops not sure what I did to my computer but it posted my note before I was done with it.
I was trying to say that it has taken 9 months of aggressive treatment to get me back to a near normal person again. I plan on 4-6 more months of meds.
You can get there too. It will be a bumpy ride. I just want to say that this anxiety can make you feel like you're crazy...but you are not.
Lyme and co's stink. But, there is hope. Hang on tight and know that you are not alone.
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