Author Topic: The Lyme disease benzo mind&&@  (Read 3702 times)

[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #10 on: February 17, 2017, 02:47:33 pm »
see your story is so typical of so many...except you did get bit....but how can one spend $$$$$ for treatment without concrete evidence?

My insurance would never pay for any of this   and until I am off benzos etc thetre is NO way I would even consider Lyme being a cause

you stated that you were not on benzos...you got bit and then got sick....that is not my case at all

I am so glad to hear that you are better and I pray for my friend that she too will find remission

she lives in CT and so her chance of getting this was so high

When I took the Doxy if I had Lyme I should have had some reaction..(herxing) but absolutely nothing happened what so ever that was my 1st clue
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[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #11 on: February 17, 2017, 09:46:13 pm »
I noticed the word Lyme in your topic and thought Iíd pop in. ..I got Lyme disease early in benzo recovery, got the bullseye rash and the whole nine yards. Went through 6 weeks of doxy, and messed up my gut even more than it had been from withdrawal. As a result I got SIBO, and spent a year on both antibiotic protocols and herbal protocols in an effort to heal it. Then I got bitten again and had more antibiotics, and after that, I was retested and the doctors said everything was gone. But who knows?.. I try to put it out of my mind, but the ďis this still from Lyme?Ē worries get the better of me sometimes.

My primary sxs were headaches, balance issues, and joint stiffness. Now the headaches are gone but the other two sxs reappear intermittently. Guess Iíll never really know which of my sxs are due to benzos and which are due to Lyme, and thatís very frustrating, but Iíve accepted it.

After one year of SIBO treatment my gut was still messed up, and I decided to do something outside of the box. I got my Medical Marijuana license and began a protocol of non-psychoactive low-dose CBD to help restore balance to my gut. Iíve been using the CBD for 2 1/2 months and I believe itís helping.

Iím sorry my experience doesnít directly parallel any of yours, but I just wanted to say that i understand your frustrations and all the uncertainties youíre going through. But I donít know about tapering with Lyme disease - mine came after I was already benzo free.

I believe BB member LovingMother tapered successfully with Lyme disease. I don;t think she's posted a success story yet, but hereís her 2.5 yr update:
http://www.benzobuddies.org/forum/index.php?topic=168614.msg2250434#msg2250434
She doesnít talk about her Lyme in this post, but Iíll bet you could PM her and sheíd be happy to answer questions.
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[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #12 on: February 17, 2017, 11:00:21 pm »
thanks 35....but I do not have Lyme...I was persuaded by well intentioned ppl to think that what I was dealing with was Lyme but again..I tested negative 4 xs  and I don't have any joint pain. Just dizzy and anxiety

SIBO  oh how I know that all to well...when I 1st became ill I was having horrendous gut pain and started losing 2lbs a week

GI did endoscopy (thought for sure I had stomach cancer) and lo & behold after biopsy it was H-pylori

so antibiotics...then that was "eradicated" but still sick..breath test shown SIBO  more antibiotics
Now gut is a  mess and probably always will be
I found after researching that H-pylori could cause anxiety!

never been well since

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[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #13 on: February 18, 2017, 01:02:21 am »
I fear I have Lyme disease and its not actually withdrawal from AD. I got half a positive in the test, and negative/inconclusive in the other (which tends to be the definitive factor in whether its an overall positive or negative). I'm on a waiting list to see an infectious diseases doctor and will then see about getting further tests and if they can debunk some of the dogma out there about Lyme. There is nothing in the history of medicine that is so apparently wide-spread, sneaky, dormant, random, a symptom list covering basically any symptom known to human (a catch all?) and debilitating as what people claim Lyme to be.

What I can't get my head around how I have suddenly fell so ill after a night of heavy drinking - 5 months after a cold turkey of an AD, but yet my GP tends to believe it is Lyme due to my half positive test. She never even heard of it prior to me asking for the test (Dr. Google and immense anxiety led me to believe I had it). She doesn't believe in withdrawal lasting so long you see.

I never had flu-symptoms prior to falling ill. I never was bitten, no rash, no aching joints or fatigue. When I got the half positive, I starting thinking back through my life about things (Lyme disease community say it can happen years ago and only come out now - which I think is nonsense). I then remember a time I had a rash on my back about 10 years ago, so was basically scared then that it was that point in my life I got the Lyme.

The timeline though.... just can't believe its Lyme. Surely it's withdrawal? I was fit as a fiddle prior to stopping Citalopram. Could drink alcohol, coffee, eat whatever I want... no anxiety. I'm just so doubtful and don't know what to think. Does anyone with withdrawal react to antibiotics? I got really heavy-headed and couldn't breath. Didn't feel well. I'm told thats an indicator, but considering WD people react to a lot of other things they tolerated previously, I don't know?
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[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #14 on: February 18, 2017, 01:19:02 pm »
I fear I have Lyme disease and its not actually withdrawal from AD. I got half a positive in the test, and negative/inconclusive in the other (which tends to be the definitive factor in whether its an overall positive or negative). I'm on a waiting list to see an infectious diseases doctor and will then see about getting further tests and if they can debunk some of the dogma out there about Lyme. There is nothing in the history of medicine that is so apparently wide-spread, sneaky, dormant, random, a symptom list covering basically any symptom known to human (a catch all?) and debilitating as what people claim Lyme to be.

What I can't get my head around how I have suddenly fell so ill after a night of heavy drinking - 5 months after a cold turkey of an AD, but yet my GP tends to believe it is Lyme due to my half positive test. She never even heard of it prior to me asking for the test (Dr. Google and immense anxiety led me to believe I had it). She doesn't believe in withdrawal lasting so long you see.

I never had flu-symptoms prior to falling ill. I never was bitten, no rash, no aching joints or fatigue. When I got the half positive, I starting thinking back through my life about things (Lyme disease community say it can happen years ago and only come out now - which I think is nonsense). I then remember a time I had a rash on my back about 10 years ago, so was basically scared then that it was that point in my life I got the Lyme.

The timeline though.... just can't believe its Lyme. Surely it's withdrawal? I was fit as a fiddle prior to stopping Citalopram. Could drink alcohol, coffee, eat whatever I want... no anxiety. I'm just so doubtful and don't know what to think. Does anyone with withdrawal react to antibiotics? I got really heavy-headed and couldn't breath. Didn't feel well. I'm told thats an indicator, but considering WD people react to a lot of other things they tolerated previously, I don't know?

Irish, itís definitely unsettling to Ďwonderí whether or not you have Lyme. Very frustrating. I donít know the significance of a half-positive test, but Iím guessing that the results will be interpreted differently by different professionalsÖ. In any case, unless you want to put yourself through a long course of antibiotics, take some comfort in knowing that most of the herbal protocols, supplements, food eliminations, etc. that they recommend for Lyme are actually quite effective for benzo and A/D w/d sxs too. So when you see your Lyme professional, that might be something to keep in mind. - treating one is not necessarily going to exacerbate the other.

Iíd just like to warn you about the anxiety factor - investigating Lyme is very anxiety-provoking, and if you have anxiety, it will probably get worse while youíre trying to figure this out. Personally,  I would focus on one or the other, because trying to get to the bottom of both issues at once will be incredibly confusing. And like I said, the treatment options they gave me for Lyme were also very helpful for my benzo healing.

But hereís one positive aspect of having a dx of Lyme - thereís no stigma, like there is with psych meds. So if you ever have a reason to mention some of your health issues in the F2F world, people are much more openly empathetic about Lyme. So you end up being able to refer to the same sxs, but you won't be judged as harshly as sometimes happens with talk of psych meds. Not fair, but true.

My experience with coming off ADs is not clear enough to be helpful. I was on 5 at once, plus 2 benzos, and I tapered each sequentially, on my own, before discovering BB. So it was pure hell, and all I can say is donít do it my way.

Have you read Mindseekerís sticky note about A/Ds? She recommends the Surviving Antidepressants web site as a great resource. You probably already know of it, but I just thought Iíd mention it. Good luck and I hope you get some helpful guidance soon,
[...].

http://www.benzobuddies.org/forum/index.php?topic=142057.msg1911233#msg1911233
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #15 on: February 19, 2017, 12:30:59 pm »
I fear I have Lyme disease and its not actually withdrawal from AD. I got half a positive in the test, and negative/inconclusive in the other (which tends to be the definitive factor in whether its an overall positive or negative). I'm on a waiting list to see an infectious diseases doctor and will then see about getting further tests and if they can debunk some of the dogma out there about Lyme. There is nothing in the history of medicine that is so apparently wide-spread, sneaky, dormant, random, a symptom list covering basically any symptom known to human (a catch all?) and debilitating as what people claim Lyme to be.

What I can't get my head around how I have suddenly fell so ill after a night of heavy drinking - 5 months after a cold turkey of an AD, but yet my GP tends to believe it is Lyme due to my half positive test. She never even heard of it prior to me asking for the test (Dr. Google and immense anxiety led me to believe I had it). She doesn't believe in withdrawal lasting so long you see.

I never had flu-symptoms prior to falling ill. I never was bitten, no rash, no aching joints or fatigue. When I got the half positive, I starting thinking back through my life about things (Lyme disease community say it can happen years ago and only come out now - which I think is nonsense). I then remember a time I had a rash on my back about 10 years ago, so was basically scared then that it was that point in my life I got the Lyme.

The timeline though.... just can't believe its Lyme. Surely it's withdrawal? I was fit as a fiddle prior to stopping Citalopram. Could drink alcohol, coffee, eat whatever I want... no anxiety. I'm just so doubtful and don't know what to think. Does anyone with withdrawal react to antibiotics? I got really heavy-headed and couldn't breath. Didn't feel well. I'm told thats an indicator, but considering WD people react to a lot of other things they tolerated previously, I don't know?

Irish, itís definitely unsettling to Ďwonderí whether or not you have Lyme. Very frustrating. I donít know the significance of a half-positive test, but Iím guessing that the results will be interpreted differently by different professionalsÖ. In any case, unless you want to put yourself through a long course of antibiotics, take some comfort in knowing that most of the herbal protocols, supplements, food eliminations, etc. that they recommend for Lyme are actually quite effective for benzo and A/D w/d sxs too. So when you see your Lyme professional, that might be something to keep in mind. - treating one is not necessarily going to exacerbate the other.

Iíd just like to warn you about the anxiety factor - investigating Lyme is very anxiety-provoking, and if you have anxiety, it will probably get worse while youíre trying to figure this out. Personally,  I would focus on one or the other, because trying to get to the bottom of both issues at once will be incredibly confusing. And like I said, the treatment options they gave me for Lyme were also very helpful for my benzo healing.

But hereís one positive aspect of having a dx of Lyme - thereís no stigma, like there is with psych meds. So if you ever have a reason to mention some of your health issues in the F2F world, people are much more openly empathetic about Lyme. So you end up being able to refer to the same sxs, but you won't be judged as harshly as sometimes happens with talk of psych meds. Not fair, but true.

My experience with coming off ADs is not clear enough to be helpful. I was on 5 at once, plus 2 benzos, and I tapered each sequentially, on my own, before discovering BB. So it was pure hell, and all I can say is donít do it my way.

Have you read Mindseekerís sticky note about A/Ds? She recommends the Surviving Antidepressants web site as a great resource. You probably already know of it, but I just thought Iíd mention it. Good luck and I hope you get some helpful guidance soon,
[...].

http://www.benzobuddies.org/forum/index.php?topic=142057.msg1911233#msg1911233

Thanks for that! Yeah i'm on the Surviving Antidepressants page, but it hasn't got as much activity as this forum. My main symptoms are more prevalent on benzobuddies (although I've never taken a benzo) but apparently the symptoms of both are identical in many aspects.

What I find dangerous with Lyme and that community is that they entirely believe in a clinical diagnosis, and that is definitely the wrong thing to do. It strikes me as peculiar that there is a high incidence of people on Benzobuddies that have been diagnosed with Lyme (it being a clinical diagnosis and not a test). The symptoms are exactly the same. How can the people deny what is benzo/AD or Lyme?

I truly believe context is key in finding the right diagnosis. Presenting with my symptoms to a LLD would make them quick to diagnose me and have me be on antibiotics - however, what if I said I quit an AD recently... would that change their mind? It's certainly not evidence based medicine and a tad scary to be fair. There are many things that cause the same symptoms in this world - there are only a finite amount of symptoms the body can produce. Clinical diagnosis' in my opinion are highly dangerous.
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[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #16 on: February 19, 2017, 02:24:39 pm »
Irish, it sounds like you already know what you want to do. Youíre right, unless you get the bullseye rash followed by sxs within a certain timeline, the DX for Lyme is most often clinical.
And since you canít know for sure whether or not its the right dx for you, it sounds like you donít want to commit to treatment that may or may not be helpfulÖ That sounds healthy!

So once you can live with the uncertainty of never knowing or sure (and itís tough to get to that point of acceptance), you can simply decide to take care of yourself in a way that will benefit both conditions. Eat better, find ways to stay calm and de-stress, and be gentle with yourself.

Like you, I was determined to get to the bottom of my Lyme vs Psch-Med dilemma, but something finally clicked inside my head when I was at my third GI Doc and she said, ďI would just live my life if I were you. Youíre 58 years old and at some point you just have to allow yourself to enjoy your life. Youíll probably never get definitive answers,  so you have to decide- just how far do you really want to kick this can down the road?Ē

To kick or not to kick, that is the question. ;)
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[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #17 on: February 19, 2017, 02:28:58 pm »
[...], I too am 58 yrs old..wish I could JUST LIVE MY LIFE

as you stated I had to make the decision that without concrete evidence of Lyme I needed to put that idea to rest and concentrate on my benzo w/d for now

I personally could NEVER afford the treatments..because without positive blood work most insutrances will not pay for any treatment

I already spent over thousand dollars looking for this...no more
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[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #18 on: February 21, 2017, 04:39:31 am »
Smart to kick it down the road
Another benzo person I know was convinced it was Lyme and spent 20 grand in txf only to spark an autoimmune illness
All Lyme docs say everything is Lyme
Maybe we ALL have it.
My tests are inconclusive as well. Not yes, not no. From Stonybrook labs. iD doctors believe this lab
However my igenex is positive. Is that a real test?  Don't know
Jennifer Leigh told me she is positive on igenex. She chooses to ignore her Lyme test. She focused on her benzo w.d and healed
My sx are similar to hers
Geraldine burns was fine tapering off benzo then at month give the gates of hell opened for her. It took her over two years to heal. Many are hit with tardive type of issues.
Good you don't have akathisia believe me  I would take any sx over akathisia.
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[Buddie]

Re: The Lyme disease benzo mind&&@
« Reply #19 on: February 21, 2017, 09:58:52 am »
Smart to kick it down the road
Another benzo person I know was convinced it was Lyme and spent 20 grand in txf only to spark an autoimmune illness
All Lyme docs say everything is Lyme
Maybe we ALL have it.
My tests are inconclusive as well. Not yes, not no. From Stonybrook labs. iD doctors believe this lab
However my igenex is positive. Is that a real test?  Don't know
Jennifer Leigh told me she is positive on igenex. She chooses to ignore her Lyme test. She focused on her benzo w.d and healed
My sx are similar to hers
Geraldine burns was fine tapering off benzo then at month give the gates of hell opened for her. It took her over two years to heal. Many are hit with tardive type of issues.
Good you don't have akathisia believe me  I would take any sx over akathisia.

This is refreshing and excellent to hear - music to my ears! That someone has presented somehow as positive, but yet healed completely as the logical route was withdrawal and not Lyme. Perhaps we do all have it? Some present with symptoms (which I have never done - my anxiety is obviously and logically due to a harsh childhood) and some don't. However, Lyme believers would state it's Lyme giving me the anxiety, mainly social anxiety and completely disregard the physical affects situations can have on you, especially at childhood.

Can I ask what symptoms that person who healed had that are also identical to yours?
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