3 years post Paxil

Johnnny off Paxil · 12-05-2009, 08:18 AM

Warning..long post

Hi folks, I have just come to post an update on whats been happening to me health wise and to encourage others struggling with either withdrawal or an adverse reaction. Firstly a bit of history.

1) In the Summer and Fall of 2006 after doctors extensive tests on me and "could find nothing". My GP concluded that my condition must be "psychological" and "made certain assumptions"( all that were almost "deadly wrong") and on September 2nd 2006, prescribed to me Paxil.
2) I subsequently had a"Severe Adverse Reaction or Severe Allergic Reaction" to the SSRI's that were almost fatal, the reaction time took longer for me than does most people
3) after 3 very serious visits to the hospital , including one for "serotonin syndrome" and 2 or 3 episodes of "daytime hallucinations"..I decided that this drug was dangerous and not for me. I did a "quick taper" over a period of 4 weeks and took my last dose of SSRI's on December 4th 2006.
4) It took until January 10th, 2007 before all Hell broke lose..that's almost 6 weeks... I post this because many folks who CT off of Paxil , say a week later or 2 weeks or 3 weeks..the post says " Been 3 weeks and feeling fine"... little do they know what awaits them, sometimes it takes up to 6 weeks.

5) the year 2007 was a horrendous year for me, keep in mind I still was running my business during ll this time

I basically had every symptom described on the forum, the most severe being the sleep apnea, tachycardia, brachycardia, pneumonia, sinus infections, ear infections, dental issues, dizziness, episodes of thinking I was going to go stark raving mad or lose my mind, insomnia, tingling and numbness in my arms legs, severe sweating, depersonalization, and later an ongoing struggle with dysautonomia.
May ,June,July of 2007 were periods where I could not walk even a block, by " automatic or autonomous breathing" program..for lack of a better way to describe it was completely broken down.. I literally had to "think" about inhaling and exhaling...that is think..breathe in...think breathe out....... how is that for nuts..how is that for "Paxil is as harmless as children's aspirin"...yeah right doc..got ya right

Finally in August of 2007 after tired of doing the Dr Merry-Go- Round thing, I connected with a Lyme Literate doctor.
I was diagnosed with a Bartonella and possible Lyme co- infection.
AS soon as we started to treat my illness " as Lyme".. I immediately started to feel better. I later connected with a specialist in New York, and took a special antibiotic protocol for almost 2 years, which upon his suggestion was stopped in January 2009 of this year. He suggested that the rest of my symptoms were"nervous system trauma" that the only way to heal this was , exercise, sauna and massage treatments......was he right..... well I am getting better..so I guess so. Keep in mind that both Bartonella and Lyme are very difficult to eradicate from the body , especially what they call "late lyme" or stage 2 or 3 lyme. So were are optimistic but vigilant.

So what have we learned form all of this.

1) In Canada, for those who may have Lyme or some bacterial infection, this is a typical treatment response , essentially our Canadian Medical establishment is still convinced that Lyme disease is "extremely rare" or doesn't exist in Canada, if you have Lyme disease and live in Canada ..forget it, your S.O.L..... doctors will not treat you. If they do it will be 1 month of doxycycline..that's about it.... of course anyone who knows anything about Lyme, knows that you need to be on antibiotics for at least 3 to 4 months to cover the life cycle of the bacteria, but that's were it gets political and controversial.

2)what do we know about Paxil

1) from my physio, we now know that it caused severe muscular contractions and in some cases muscle and ligament tearing, yup..that's right folks...picture that in your mind..the muscles spasming so severely they tear.
2) all 3 diaphragm muscle groups in my body are completely screwed up , its only after 2 years of treatment we are seeing some relief.
3) does Paxil cause nerve damage, yes it does.. I don't have any science but only my experience, can the body recover from this? Yes but it takes a long time.

Resolved and remaining issues:

1) I still have episodes of dysautomomia, that is :
1) after eating a meal, my heart starts pounding and racing for about 1 to 2 hrs,..then vanishes...
2) there are still periods of chest tightness and chest pain and tachycardia and flutters..but they are not constant as they used to. NOT exercise related and yes I have taken every "heart test" under the sun....

That is all that remains of of the "laundry list" of symptoms I had.

Fruit of the Paxil Experience
1) my once black beard is almost white.. from the sheer stress of this, our family doesn't get gray hairs until we reach our 80's.. I am 48
2) Doctors, especially GP's and psych's know virtually nothing of the drugs they are prescribing
3) SSRI's need to be banned and removed from the market....the social wreckage these drugs have caused is horrendous and those" profiting" from this should be in jail
4) If you DO have Lyme disease and live in Canada.... the situation is tragic at best..we have a very serious problem here in Canada with the medical establishment..the 100,000,000 dollar question is why? Why , when there is clear proof that Lyme disease is very prevalent , why is it being denied?
Why did our Canadian Health Minister refuse to disclose the number of reported cases of Lyme in Canada on the basis of "National Security"....what ta heck does Lyme disease have to do with National security unless is actually Bio weapon....it simply makes people even more suspicious.

Conclusion:

Can one heal...yes
Does one recover from something so severe and traumatic as I went through?...yes..its possible but it takes time, a long time.

Considering taking Paxil..think again

Believe everything Doc says? Think again... the ratio of good doctors to bad, knowledgeable to clueless...98% clueless..2 % knowledgeable
IF you do have a good doctor that understands how horrible SSRI's are, you have yourself and unusual a special person, "grapple them with hoops of steel".

That is all..... I thank the Lord for having my Life back, that too can be traumatic, after living so long on " death row"..that's what my Paxil experience felt like for almost 3 years.

I you suspect you have Lyme or Bartonella and live in Canada, its very , very important you connect with a Lyme Literate doctor or Can Lyme or Dr Murakami's website

http://murakamicentreforlymebc.givin...m/default.aspx

Don't wait and don't do the "Dr Merry Go Round" thing..... the sooner your on top of this the better are your chances of a full recovery.

Best and thank you all folks at Paxil Progress for all your help during my period of Hell.

Peace , love and Blessings

Johnny

LCrawford67 · 12-05-2009, 08:27 AM

So nice to read how far you've come, Johnny. Just amazing!

I'm glad you were finally treated for Lyme and yes, this is something that's sorely misdiagnosed here and totally ignored in Canada.

Here's something you may have already seen, but here it is:

http://www.ctv.ca/servlet/ArticleNew...1114?s_name=W5

Lucy · 12-05-2009, 08:30 AM

Thanks so much for posting this! Can you tell me more about your sleep apnea - that's one of my problems, even though I think it is beginning to improve. I can feel it happening as I fall asleep, and it has been confirmed in lab tests.

Did this( apnea) go away ? Do you use a CPAP to breathe at night? do you think it was related to Lyme or paxil or both?

thanks, Johnny. thanks and blessings to you also!

Johnnny off Paxil · 12-05-2009, 09:10 AM

Quote:

Originally Posted by LCrawford67

So nice to read how far you've come, Johnny. Just amazing!

I'm glad you were finally treated for Lyme and yes, this is something that's sorely misdiagnosed here and totally ignored in Canada.

Here's something you may have already seen, but here it is:

http://www.ctv.ca/servlet/ArticleNew...1114?s_name=W5

Laurie, we here in the Canadian Lyme Group feel that we are making important inroads with the media and public in general about Lyme. The W5 show was superb and showed the "glaring" inefficiencies and almost criminal neglect of those with Lyme. Thanks to all those courageous souls who allowed themselves to be interviewed.

Regards, Johnny

Johnnny off Paxil · 12-05-2009, 09:15 AM

Quote:

Originally Posted by Lucy

Thanks so much for posting this! Can you tell me more about your sleep apnea - that's one of my problems, even though I think it is beginning to improve. I can feel it happening as I fall asleep, and it has been confirmed in lab tests.

Did this( apnea) go away ? Do you use a CPAP to breathe at night? do you think it was related to Lyme or paxil or both?

thanks, Johnny. thanks and blessings to you also!

No I did not use a CPAP... I simply prayed my way through it...I also do deep meditation twice a day for at least 1 hr..this has helped tremendously

The Apnea was caused directly from the Paxil... and get this when I finally did get to the sleep clinic I took a long time informing the doctor about my hellish experience with Paxil and that I believed Paxil was the main culprit...so do the sleep test..the revisit from the sleep doctor...guess what he said " because you have little extra weight, this has caused some "minor apnea" keep the weight issue down, there shouldn't be any problems...really doc,,, did you listen to a GDM word I said..NO he didn't...typical

With proper Osteotherapy, acupuncture, massage, exercise..yes it is slowllly healing..it takes time because it was my autonomic nervous system that was so profoundly impacted.

Regards, Johnny

scotty · 12-05-2009, 09:26 AM

I think the presence of Bartonella is missed in so many, especially in Canada. It can be a devastating disease that mimics so many other conditions. Advanced Bartonella/Lyme shouldn't be happening, in this day and age, but it is happening daily in Canada. So sad.

pax80 · 12-05-2009, 10:18 AM

great update johnny!
I'm really glad you 're almost done with this!

Lucy · 12-05-2009, 10:19 AM

Thank you very much for the info, Johnny. I think I have autonomic dysfunction also -- can't get warm, have cold chills, etc., had a feeling of heartbeat irregularities at first and blood pressure problems that have now cleared.

I think my sleep clinic doctor was surprised when my sleep lab results were positive! He did the test because of my complaints about breathing problems, but only because he wanted to prescribe tranquilizers, which would be dangerous if I really did have apnea. ( I would not take those drugs, but I agreed to the lab test anyway.) He was certain the breathing problems were "just stress". When I told him about the SSRI connection, he seemed skeptical, but I don't think he completely rejected the idea after the lab results came back.

I'm not your typical candidate for sleep apnea in terms of weight - I'm just barely over the recommended BMI levels. I'm not using CPAP either, because I don't think this feels like ordinary sleep apnea, and I'm afraid CPAP could make it worse, or have some bad side effect.

I already found that exercise is helpful, I'm going to try your other therapies -- massage, meditation, and maybe sauna.

nickels · 12-05-2009, 10:42 AM

Very insightful post Johnny...thank you for sharing. Such a shame that you weren't immediately diagnosed with Lyme and had to go through such torture. However, I'm so glad to hear of your amazing progress...what a story you've got.

bunny88 · 12-05-2009, 06:38 PM

:"I literally had to "think" about inhaling and exhaling...that is think..breathe in...think breathe out......."

i had this i thought it was just my anxiety i thought i was going to die if i wasnt thinking about it and even then it just felt like i would stop.
You didnt mention any depression through you withdrawal period did you get any? I had a severe 8 day reaction to lexapro. Would have stopped after one day if it wernt for my doctors reasurance.

edrophis · 12-06-2009, 08:42 AM

This is a very interesting post regarding the one year antibiotic round that Johnny here had to take.I am still tapering klonopin,and I have been taking some homeopathic antibiotic for over a month now,and I am wondering,if someone must take antibiotics while they are tapering should they hold back on the taper,or keep tapering?Thank you.

scotty · 12-06-2009, 08:46 AM

Quote:

Originally Posted by edrophis

This is a very interesting post regarding the one year antibiotic round that Johnny here had to take.I am still tapering klonopin,and I have been taking some homeopathic antibiotic for over a month now,and I am wondering,if someone must take antibiotics while they are tapering should they hold back on the taper,or keep tapering?Thank you.

The antibiotics are for the Lyme disease, not for ssri weaning.

edrophis · 12-06-2009, 09:00 AM

Quote:

Originally Posted by scotty

The antibiotics are for the Lyme disease, not for ssri weaning.

No Scotty I am sorry but I forgot to clarify that I am taking the antibiotics for a staph infection,and salmonella.I was just wondering how this would effect anyones taper.

12-05-2009, 08:18 AM	#1
Johnnny off Paxil Join Date: Feb 2007 Location: Persona Non Grata... I am No Expert on Nothing Posts: 2,954	3 years post Paxil Warning..long post Hi folks, I have just come to post an update on whats been happening to me health wise and to encourage others struggling with either withdrawal or an adverse reaction. Firstly a bit of history. 1) In the Summer and Fall of 2006 after doctors extensive tests on me and "could find nothing". My GP concluded that my condition must be "psychological" and "made certain assumptions"( all that were almost "deadly wrong") and on September 2nd 2006, prescribed to me Paxil. 2) I subsequently had a"Severe Adverse Reaction or Severe Allergic Reaction" to the SSRI's that were almost fatal, the reaction time took longer for me than does most people 3) after 3 very serious visits to the hospital , including one for "serotonin syndrome" and 2 or 3 episodes of "daytime hallucinations"..I decided that this drug was dangerous and not for me. I did a "quick taper" over a period of 4 weeks and took my last dose of SSRI's on December 4th 2006. 4) It took until January 10th, 2007 before all Hell broke lose..that's almost 6 weeks... I post this because many folks who CT off of Paxil , say a week later or 2 weeks or 3 weeks..the post says " Been 3 weeks and feeling fine"... little do they know what awaits them, sometimes it takes up to 6 weeks. 5) the year 2007 was a horrendous year for me, keep in mind I still was running my business during ll this time I basically had every symptom described on the forum, the most severe being the sleep apnea, tachycardia, brachycardia, pneumonia, sinus infections, ear infections, dental issues, dizziness, episodes of thinking I was going to go stark raving mad or lose my mind, insomnia, tingling and numbness in my arms legs, severe sweating, depersonalization, and later an ongoing struggle with dysautonomia. May ,June,July of 2007 were periods where I could not walk even a block, by " automatic or autonomous breathing" program..for lack of a better way to describe it was completely broken down.. I literally had to "think" about inhaling and exhaling...that is think..breathe in...think breathe out....... how is that for nuts..how is that for "Paxil is as harmless as children's aspirin"...yeah right doc..got ya right Finally in August of 2007 after tired of doing the Dr Merry-Go- Round thing, I connected with a Lyme Literate doctor. I was diagnosed with a Bartonella and possible Lyme co- infection. AS soon as we started to treat my illness " as Lyme".. I immediately started to feel better. I later connected with a specialist in New York, and took a special antibiotic protocol for almost 2 years, which upon his suggestion was stopped in January 2009 of this year. He suggested that the rest of my symptoms were"nervous system trauma" that the only way to heal this was , exercise, sauna and massage treatments......was he right..... well I am getting better..so I guess so. Keep in mind that both Bartonella and Lyme are very difficult to eradicate from the body , especially what they call "late lyme" or stage 2 or 3 lyme. So were are optimistic but vigilant. So what have we learned form all of this. 1) In Canada, for those who may have Lyme or some bacterial infection, this is a typical treatment response , essentially our Canadian Medical establishment is still convinced that Lyme disease is "extremely rare" or doesn't exist in Canada, if you have Lyme disease and live in Canada ..forget it, your S.O.L..... doctors will not treat you. If they do it will be 1 month of doxycycline..that's about it.... of course anyone who knows anything about Lyme, knows that you need to be on antibiotics for at least 3 to 4 months to cover the life cycle of the bacteria, but that's were it gets political and controversial. 2)what do we know about Paxil 1) from my physio, we now know that it caused severe muscular contractions and in some cases muscle and ligament tearing, yup..that's right folks...picture that in your mind..the muscles spasming so severely they tear. 2) all 3 diaphragm muscle groups in my body are completely screwed up , its only after 2 years of treatment we are seeing some relief. 3) does Paxil cause nerve damage, yes it does.. I don't have any science but only my experience, can the body recover from this? Yes but it takes a long time. Resolved and remaining issues: 1) I still have episodes of dysautomomia, that is : 1) after eating a meal, my heart starts pounding and racing for about 1 to 2 hrs,..then vanishes... 2) there are still periods of chest tightness and chest pain and tachycardia and flutters..but they are not constant as they used to. NOT exercise related and yes I have taken every "heart test" under the sun.... That is all that remains of of the "laundry list" of symptoms I had. Fruit of the Paxil Experience 1) my once black beard is almost white.. from the sheer stress of this, our family doesn't get gray hairs until we reach our 80's.. I am 48 2) Doctors, especially GP's and psych's know virtually nothing of the drugs they are prescribing 3) SSRI's need to be banned and removed from the market....the social wreckage these drugs have caused is horrendous and those" profiting" from this should be in jail 4) If you DO have Lyme disease and live in Canada.... the situation is tragic at best..we have a very serious problem here in Canada with the medical establishment..the 100,000,000 dollar question is why? Why , when there is clear proof that Lyme disease is very prevalent , why is it being denied? Why did our Canadian Health Minister refuse to disclose the number of reported cases of Lyme in Canada on the basis of "National Security"....what ta heck does Lyme disease have to do with National security unless is actually Bio weapon....it simply makes people even more suspicious. Conclusion: Can one heal...yes Does one recover from something so severe and traumatic as I went through?...yes..its possible but it takes time, a long time. Considering taking Paxil..think again Believe everything Doc says? Think again... the ratio of good doctors to bad, knowledgeable to clueless...98% clueless..2 % knowledgeable IF you do have a good doctor that understands how horrible SSRI's are, you have yourself and unusual a special person, "grapple them with hoops of steel". That is all..... I thank the Lord for having my Life back, that too can be traumatic, after living so long on " death row"..that's what my Paxil experience felt like for almost 3 years. I you suspect you have Lyme or Bartonella and live in Canada, its very , very important you connect with a Lyme Literate doctor or Can Lyme or Dr Murakami's website http://murakamicentreforlymebc.givin...m/default.aspx Don't wait and don't do the "Dr Merry Go Round" thing..... the sooner your on top of this the better are your chances of a full recovery. Best and thank you all folks at Paxil Progress for all your help during my period of Hell. Peace , love and Blessings Johnny

12-05-2009, 08:27 AM	#2
LCrawford67 Moderator "Everybody poops" Join Date: Mar 2006 Location: Ohio Posts: 30,287	Re: 3 years post Paxil So nice to read how far you've come, Johnny. Just amazing! I'm glad you were finally treated for Lyme and yes, this is something that's sorely misdiagnosed here and totally ignored in Canada. Here's something you may have already seen, but here it is: http://www.ctv.ca/servlet/ArticleNew...1114?s_name=W5 __________________ aka LC aka Laurie C. Paxil, 20 mg since 1997, for IBS Two unsuccessful attempts to quit. Started tapering 11/27/06 PAXIL FREE 12/29/07 *"Whether You Believe You Can, Or You Can't, You Are Right."* ~ Henry Ford

12-05-2009, 08:30 AM	#3
Lucy Join Date: Jul 2009 Posts: 871	Re: 3 years post Paxil Thanks so much for posting this! Can you tell me more about your sleep apnea - that's one of my problems, even though I think it is beginning to improve. I can feel it happening as I fall asleep, and it has been confirmed in lab tests. Did this( apnea) go away ? Do you use a CPAP to breathe at night? do you think it was related to Lyme or paxil or both? thanks, Johnny. thanks and blessings to you also!

12-05-2009, 09:26 AM	#6
scotty Administrator Join Date: Feb 2004 Location: new jersey Posts: 40,828	Re: 3 years post Paxil I think the presence of Bartonella is missed in so many, especially in Canada. It can be a devastating disease that mimics so many other conditions. Advanced Bartonella/Lyme shouldn't be happening, in this day and age, but it is happening daily in Canada. So sad. __________________ AKA Laurie "By ignoring the environmental factors the psychiatric profession gives itself complete job security by diagnosing life as a mental illness. The only people who will not qualify for a disorder are those who are dead." Joseph Arpaia, MD

12-05-2009, 10:18 AM	#7
pax80 Join Date: Jul 2005 Location: Portugal Posts: 3,765	Re: 3 years post Paxil great update johnny! I'm really glad you 're almost done with this! __________________ 2002- 10mg diazepam(for a neck pain) 2003- 20mg seroxat(for benzo wd) 2005-stopped diazepam (1 year taper plus acupuncture) 2006-stopped paxil (1 year taper) 3 years free from drugs

12-05-2009, 10:19 AM	#8
Lucy Join Date: Jul 2009 Posts: 871	Re: 3 years post Paxil Thank you very much for the info, Johnny. I think I have autonomic dysfunction also -- can't get warm, have cold chills, etc., had a feeling of heartbeat irregularities at first and blood pressure problems that have now cleared. I think my sleep clinic doctor was surprised when my sleep lab results were positive! He did the test because of my complaints about breathing problems, but only because he wanted to prescribe tranquilizers, which would be dangerous if I really did have apnea. ( I would not take those drugs, but I agreed to the lab test anyway.) He was certain the breathing problems were "just stress". When I told him about the SSRI connection, he seemed skeptical, but I don't think he completely rejected the idea after the lab results came back. I'm not your typical candidate for sleep apnea in terms of weight - I'm just barely over the recommended BMI levels. I'm not using CPAP either, because I don't think this feels like ordinary sleep apnea, and I'm afraid CPAP could make it worse, or have some bad side effect. I already found that exercise is helpful, I'm going to try your other therapies -- massage, meditation, and maybe sauna.

12-05-2009, 10:42 AM	#9
nickels Join Date: Aug 2007 Location: Long Island, NY Posts: 2,280	Re: 3 years post Paxil Very insightful post Johnny...thank you for sharing. Such a shame that you weren't immediately diagnosed with Lyme and had to go through such torture. However, I'm so glad to hear of your amazing progress...what a story you've got. __________________ Nicole 2000 - 20mgs Paxil for GAD & Panic Attacks 2001 - 30mgs increased to 40mgs 2006 - back down to 20mgs - poop out 2/2007 - C/T off 20mgs - went back on at 10mgs 7/2007 - stabilized then started my taper off of 10mgs 8/2007 - down to 5mgs then found PP and began 10% taper 10/15/2008 - 0! 2/2009 - started CBT to finally work on anxiety

12-05-2009, 06:38 PM	#10
bunny88 Join Date: Jul 2009 Posts: 135	Re: 3 years post Paxil :"I literally had to "think" about inhaling and exhaling...that is think..breathe in...think breathe out......." i had this i thought it was just my anxiety i thought i was going to die if i wasnt thinking about it and even then it just felt like i would stop. You didnt mention any depression through you withdrawal period did you get any? I had a severe 8 day reaction to lexapro. Would have stopped after one day if it wernt for my doctors reasurance.

12-06-2009, 08:42 AM	#11
edrophis Join Date: Apr 2009 Posts: 418	Re: 3 years post Paxil This is a very interesting post regarding the one year antibiotic round that Johnny here had to take.I am still tapering klonopin,and I have been taking some homeopathic antibiotic for over a month now,and I am wondering,if someone must take antibiotics while they are tapering should they hold back on the taper,or keep tapering?Thank you.

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