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Lyme disease and healing from withdrawal


bronxboy8
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I just found out I have Lyme disease and I have had it since 17 that's the reason I was on benzos

And a/d, I would like to tell everyone to always get checked out by a doctor and make sure he runs the right test to rule everything before you say its all withdrawals I hope everyone is doing well.

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And I just found out that the lyme is in my brain,some people will tell you everything is w/d and that is the case with some but not all.if you still have w/d after 2 years I would get checked out,there comes a time when you can't keep saying its w/d alot of people have alot of trauma, pun you have any suggestions with this? You seem like you know what you talking about....

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  • Administrator

bb, how did your lyme disease get diagnosed? How do they know it's in your brain?

 

Are you getting treated for it now?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi alto I just had a scan done on my brain, and I was coming up low on my blood work, and they said when its in your brain its very hard to see,but when I was a kid I grew up in the deep woods and I started to have bad panic attacks, and cns issues which I was medicated for, and back then I had a false positive test so I went to go see a llmd doctor who confirmed me that indeed I have chronic lyme disease.

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Are you getting treated for it?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 1 year later...

I was wondering if anyone here has prolonged Lyme Disease. I remember a couple of people mentioning it before, but can't remember who or else I'd just go to your intro. I'm just wondering about how to get the true diagnosis, (not the ignorant one), the diagnosis where some doctors understand the true nature of it. I think they're called "Lyme Literate" doctors. Questions I have are thus, did you have this before you ever took psyche meds? Do you know how to reach a Lyme Literate doctor? How has withdrawal syndrome complicated matters in your treatment and such?

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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Shanti, I was treated for lyme disease beginning in 2006. I was put on Cymbalta as part of my treatment. I ended treatment

 

in 2009. But I went back on Cymbalta because of the w/d, not realizing that it was w/d. There is a lab in Calif. that specializes in

 

lyme diagnosis. It is called Igenex. Most other labs are pretty unreliable in diagnosing lyme. There is a very good website that

 

can help you find a lyme literate doctor near you. It also has lots of good information about lyme. I hope it is okay to put these

 

names on here. It is lymenet.org. Lots of helpful people on there.

2006-Cymbalta 60mg for lyme disease2009-Quit Cymbalta c/tFeb. 2010-Reinstated 60mg CymMar.2010 to May.2012 tapered Cym to 36mgMay 2012-Crossed over to 30mg CelexaMay 2012-Oct.2013 Tapered Celexa down to 2.5mgOct.2013-Switched to 30 beads CymbaltaDec.4,2013-Stopped Cymbalta at 17 beads<p>Akathisia hit at 6 wks off and continuesNow taking melatonin when needed for sleep.

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Thank you Lundeliz. Now I do remember it was you that I saw in your sig you had treatment for Lyme's. (as if Cymbalta is a treatment) Did they do the prolonged antibiotic treatment I've heard of? I saw it in a documentary called "Under Our Skin". I'm going to check out the link you posted now.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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  • 10 months later...

I just happened upon this information about Lyme Disease:

 

http://www.dailykos.com/story/2009/05/27/735851/-The-HuffPo-Road-Medical-Misinformation-at-Kos-Edit

This Diary is Misguided or Worse 

To the Kos community: The diarist here has done an excellent job of posting what I would consider ideologically biased misinformation typical of those who are associated with the IDSA. Please note that the IDSA is on a major public relations effort in order to counteract the Blumenthal investigation's results and the in-progress review of their 2006 Lyme disease guidelines.

 

I happen to be one of those unfortunate folks whose Lyme disease (documented by tick bite in endemic area, positive Western Blot and positive PCR) was not cured by the IDSA recommended treatment protocols. Having spent the first 4 years of my Lyme disease following the advice of IDSA following doctors, I ended up on permanent disability with issues that were serious enough to wonder whether I would be here today had I not found a doctor more open minded and literate in Lyme disease than the person who posted this diary. Without that doctor's care, and longer courses of antibiotics, I might not be here today.

 

More importantly, I spent a good deal of the last 10 years reading the science (all of it, not just the carefully selected articles presented by IDSA biased ideologues) and studying the politics of Lyme disease.

 

To claim that the insurance industry has not influenced the standard of care or caused issues for doctors not following IDSA protocols is either the mark of ignorance or a liar. It is documented that insurance companies have reported doctors to medical boards across the country on complaints of overdiagnosing and overtreating Lyme disease. It is also known that insurance companies have threatened to end and/or ended affiliation with doctors who treat outside IDSA guidelines.

 

And finally, it is a documented fact that several doctors who were authors of the IDSA guidelines and who are heavily involved in peer reviewed Lyme disease research also consult for insurance companies and appear as expert witnesses to testify against chronic Lyme patients. They are paid very handsomely for this. Ten years ago, one Yale affiliated doctor earned $700 for each 2 hour case review he performed. Another doctor, affiliated with UMDNJ, now employed by Baxter Pharmaceuticals, earned $650/hr. for his expert testimony.

 

The reason that IDSA is reviewing their guidelines is because their agreement with Atty. General Blumenthal, which found serious conflicts of interest in the guideline creation process, required it.

 

As for the science, there is ample peer reviewed scientific evidence that the Lyme bacteria can and does survive standard treatment protocols. There isn't a Lyme disease test in existence that can prove or disprove persisting infection. And it is because of that fact that the diarist and the IDSA can get away with such spurious claims as one doxycycline cures Lyme disease and chronic Lyme is a myth.

I've been dealing with folks like this diarist for years now. Some of them mean well and have themselves been mislead. Others are doing the bidding of those who are corrupt and greedy.

 

To learn more about the corruption behind IDSA's guidelines, please read my 2007 article, Attack of the Chronic Lyme Denialists, which can be found here:http://www.myleftnutmeg.com/...

To examine the science for yourself, please check the following links: http://www.lymeinfo.net/... http://www.lymenet.org/ http://www.ilads.org/

DISCLAIMER: None of this is to be taken as a defense of the Huffington Post.

2005-2008: Effexor; 1/2008 Tapered 3 months, then quit. 7/2008-2009 Reinstated Effexor (crying spells at start of new job.)
2009-3/2013: Switched to Pristiq 50 mg then 100 mg
3/2013: Switched to Lexapro 10mg. Cut down to 5 mg. CT for 2 weeks then reinstated for 6 weeks
8/2013-8/2014: Tapering Lexapro (Lots of withdrawal symptoms)
11/2014 -8/2015: Developed severe insomnia and uncontrollable daily crying spells
12/2014-6/2015: Tried Ambien, Klonopin,Ativan, Lunesta, Sonata, Trazadone, Seroquel, Rameron, Gabapentin - Developed Anxiety disorder, PTSD, and Psychogenic Myoclonus
7/2015-1/2016: Reinstated Lexapro 2 mg (mild improvement, but crying spells still present)

1/2016-5/2017: Lexapro 5 mg ( helped a lot, but poor stress tolerance & depressive episodes)

5/20/2017 - Raised dose to Lexapro 10 mg due to lingering depression(Total of 2 failed tapers & severe PAWS)

9/11/2018 - Present: Still on 10 mg Lexapro and mostly recovered.(Extremely sensitive to stress which triggers Myoclonus.)

Intro page: http://survivingantidepressants.org/index.php?/topic/4149-lilu-depression-worsened-by-meds/

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christiana has chronic lyme

damaged by citalopram - severe suffering for 3 years now...no improvement

 

akathsiia, pgad, dp/dr, terror, and so SO many more daily

 

severly disabled and lost everything

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Hi Shanti,

 

Iggy is correct.  I have chronic lyme.

 

If you need any help, just let me know.  It's one thing I'm highly educated about, unfortunately.

 

Lilu - thank you very much for the info! It's common knowledge within the lyme community and so frustrating!

 

2 good books I've read and still have can be found here...the 2nd one was really eye opening, especially when it comes to our own government...

 

http://www.amazon.com/Cure-Unknown-Inside-Lyme-Epidemic/dp/0312378130/ref=sr_1_9?ie=UTF8&qid=1372899740&sr=8-9&keywords=lyme+disease

 

http://www.amazon.com/Lab-257-Disturbing-Governments-Laboratory/dp/006078184X/ref=sr_1_1?s=books&ie=UTF8&qid=1372899799&sr=1-1&keywords=lyme+disease+lab+257

 

Someone was providing free lyme testing, but I can't remember who, at the moment.  I don't know if they still are or not though.  If you're interested in this info, I can dig around and figure it out for you.  Just let me know.

 

I hope I've helped! (hugs)

Jun-Jul '09 (approx 7 wks) - 5mg/day Lexapro (drug rep samples) given by family dr for long, unended, very stressful divorce

 

Each dose taken makes sicker, think it's just body adjusting, have no clue it's severe adverse reaction at time

 

Aug '09 - pharmacy gets dr rx for, insurance won't pay, I can't afford, dr changes to Celexa, decline to take, cold turkey, necessary blessing in disguise, in hindsight at least

 

Gradually feel some better over 1-2 wks, 3rd wk horrific withdrawal symptoms start & build, see doctor & start researching internet about what's happening, figure it out, 60-70+ severe, frightening, & debilitating symptoms emerge, realize nothing can do to feel better easily or quickly, feel like & think I'm dying, reach point where doctor gets home healthcare & have to call friend to stay with & take care of, friend abandons about 1 yr & lose home healthcare

 

1st yr symptoms extremely severe, 2nd yr just somewhat better, now into 3rd yr symptoms don't seem much better, still causing horrible suffering, wax & wane in severity, sometimes almost as severe as when started, practically homebound, mostly bedbound, very hard completing simple tasks, symptoms definitely much worse 7-10 days/mo around menstrual cycle

 

Have lost vehicle & home, plus loved cat & dog had for long time, was homeless several months last winter, lived out of car, living in undesirable gov't subsidized housing now causing many troubles, have no medical & very little rx insurance, disability check & food stamps aren't enough to provide basic needs, lack any reliable personal support anymore, very isolated & all alone, have many pressing stressful things must be done, can barely or unable to complete without help don't have, even ones to help situation some, don't even have finances to get urgent necessary needed help required to help situation & self, social services is frequently visiting now, fear being polydrugged, losing everything, put into nursing home, hope & pray someone will help to keep from happening, don't know what else to do, still way to sick to return to work & college, believe I will recover, in the meantime tho have no answers except to plead for help, hope & pray someone, anyone, who truly cares does soon

 

In 32nd mo now still very bad SSRI protracted withdrawal, have only seen few signs of healing since 2nd yr passed, somehow manage to keep fighting, afraid time is running out for best tho & situation only going to get worse trying to survive on own if don't get help from someone

 

This pretty much summarizes what 49 little round white pills (if I recall correctly) have done to my life & future for now, my before & after life are drastically opposite now, both my situation & self, if only I'd known their potential, a little bit too late now tho huh?.?.?...hindsight really is 20/20 isn't it?.?.?...

 

I pray God blesses and helps each and every one of us, here and elsewhere, going through this nightmare. Amen, amen, amen.

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  • 2 years later...
  • Moderator

Wow, this is becoming more of an issue.  There is a big battle in Australia as to whether it is real or not.  There are other tick-borne illnesses (we have a nasty tick here called the "paralysis tick" - you can imagine the sorts of antibodies it carries!) here, and they have found the spirochetes, but doctors are refusing to treat for Lyme.  

 

Naturopaths will, but are limited - they cannot prescribe antibiotics - as to what treatments they can give you.

 

I have a friend in the USA whose "functional medicine" doctor is insisting she has chronic Lyme, due to chronic fatigue.  But her antibody tests come up negative, and she is reluctant to do a 3 year course of multiple antibiotics "just in case."

 

Here in Australia, if you think you have it, you almost have to go to the USA or Germany to get treatment for it. There is some recognition of it, but it's rare.  http://www.lymedisease.org.au/faq/

 

I wonder about a couple of treatments:  oregano oil, which seems to be good at killing c. difficile, which is a complication with Lyme treatment, and infrared heat lamps, which seem to be excellent at detoxing bacteria, and even viruses and heavy metals.  Ideally, an infrared sauna would be better, but I'm a poor mouse and make do with a single red heat lamp - 150 watts - stronger than a "reptile lamp" but you can use up to 300w, in my understanding,  I can't imagine, because the 150w is pretty darned hot - I can only sit away from it about a foot to 18 inches, and only keep part of my skin on it for 2-3 minutes at a time.  But that's okay, I have lots of acreage, I just shift to another area.  I can actually smell bacteria and yeast being burned off.

 

My interest in this is - it's another illness which can be mistaken for depression, chronic fatigue.  Additionally, if my friend does indeed have Lyme - I was there when it happened.  We spent the night by the lake watching a meteor shower in August (Perseids).  We had to hike through thick grasses and deer tick country to get there.  It was a spectacular weekend, but when we got back to civilization, we were covered in deer tick nymphs, the size of a pencil tip.  We went to the showers and spent 4 hours with tweezers going over each other as thoroughly as possible.  But they were so small, it is possible that some were missed.  

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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Jan,

 

Can your friend get a 2nd opinion?   She certainly is right about undergoing 3 years of antibiotic treatment for a just in case situation since they can have horrific side effects.

Drug cocktail 1995 - 2010
Started taper of Adderall, Wellbutrin XL, Remeron, and Doxepin in 2006
Finished taper on June 10, 2010

Temazepam on a PRN basis approximately twice a month - 2014 to 2016

Beginning in 2017 - Consumption increased to about two times per week

April 2017 - Increased to taking it full time for insomnia

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  • 3 weeks later...

Some members here have told me that what I'm going through might be wds. They feel I should have stabilized by now. That I should be checked for Lyme.

I told my new doctor who diagnosed me with withdrawal syndrome. He said it would be huge coincidence that I started having symptoms when I cut effexor in half. He doesn't think I have Lyme.

I don't know if I should still b checked but afraid of false positives, and then have to take antibiotics. Please any feedback is appreciated.

Started Effexor August 2012 Sept'12-150mg=extreme anxiety Oct'12 cut half-75mg severe wds

Feb 2013 68.5mg. Mar'13- 65mg. Apr'13-59mg. May'13-57mg. June '13-52mg Aug'13 49.75mg.

Sep'13-48.75. Nov'13-47mg Dec'13-45..5mg

May 2014 42mg. Jun'14 40mg (depressive mood started). Aug'14 -40mg/ started brintellix 2.5mg

Oct '14 -39 Nov'14 36.89 Dec'14 34.45

Jan 2015- 31 Feb'15 29mg. Mar'15 26.72. Apr'15 24.48. May'15 22.31mg. Jun'15 20.30mg

Aug'15-18.89. Oct'15 16.96. Nov/16- 16.10. Dec/15- 15mg

Jan 2016-14.22. May'16 11.45. Aug'16-9.60. Sep/16- 8.88mg. Oct/16- 8.39mg. Nov/16- 8.13. Dec/16- 7.89

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Lyme it's very had to get diagnosed...also in the zone of Italy where I live (north east) is very common.

http://www.betterhealthguy.com/lyme/testing

 

Laxy, do you have joints pain? Is one of tha maon symptoms

06/2012 - 02/2015 CIPRALEX 10 mg (for somatic abdominal pain + reflux) - prior to this NOT any significant episode of anxiety/depression

on medication: emotional-sexual numbness, total inability to cry, +8 kg, fatigue -> abdominal pain gone

02/2015 - 1/04/2015 tapering from 10 mg to 0 mg doctor advised

05/05/2015 huge anxiety, burning skin sensation, panic, fear, not able to cry again, never-had-before insomnia, totally lost appetite, little loss of vision in one eye, sweating, chest pain, short breath, restlessness, accelerated heartbeat, mild akathisia legs-feet

30/05/2015 reinstated 8mg (I was suggested 5 mg here)

middle 07/2015 general improving

10/2015 start disastrous too long taper 7mg  11/2015 6mg  12/2015 5mg 1/2016 4mg  2/2016 4mg  3/2016 3mg ->FAIL back to 4mg .... 8/2016 3mg 8/2017 2mg  (short wave in summer '17) 8/2018 2mg stable  8/2019 1mg  1/2020 0.6 mg 

1/APRIL/2020 0mg FREE!

7/2020 - 10/2020 MILD WAVE(mostly anxiety, poor sleep)

6/2021 - 9/2021 WAVE (anxiety, severe insomnia, total loss of appetite, deep depression, internal restlessness, anhedonia)  0.125g triazolam  2 times

18/03/2022 WAVE (anxiety, severe insomnia, total loss of appetite, PAIN in muscles and nerves, arms and right leg,cannot exercise,hard to walk) 0.125g triazolam 3 times

7/5 rein 0.1mg

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Yes I do have joint pain, dizziness, lightheaded, however i put these symptoms in the search bar and many members have these symptoms. Could I be one with very sensitized cns for the reason I have been suffering so long? Is it being female and 20yr?

Started Effexor August 2012 Sept'12-150mg=extreme anxiety Oct'12 cut half-75mg severe wds

Feb 2013 68.5mg. Mar'13- 65mg. Apr'13-59mg. May'13-57mg. June '13-52mg Aug'13 49.75mg.

Sep'13-48.75. Nov'13-47mg Dec'13-45..5mg

May 2014 42mg. Jun'14 40mg (depressive mood started). Aug'14 -40mg/ started brintellix 2.5mg

Oct '14 -39 Nov'14 36.89 Dec'14 34.45

Jan 2015- 31 Feb'15 29mg. Mar'15 26.72. Apr'15 24.48. May'15 22.31mg. Jun'15 20.30mg

Aug'15-18.89. Oct'15 16.96. Nov/16- 16.10. Dec/15- 15mg

Jan 2016-14.22. May'16 11.45. Aug'16-9.60. Sep/16- 8.88mg. Oct/16- 8.39mg. Nov/16- 8.13. Dec/16- 7.89

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I think if you feel a little bit of correlation between the intensity of these symptoms and the change of drug dose it could be cns related and not lyme......I am 29 and during all my 20s I had high and lows of dizziness and fatigue, also before ADs. It could be also "period related". There are also "funny" conditions like fibromyalgia which can give you brain fog and joint pain. I have read that in the us lyme is very diffuse now, so maybe it is better to be tested.

Sorry if I'm not very useful. Hang on!

 

Hugs!!!!!

M.

06/2012 - 02/2015 CIPRALEX 10 mg (for somatic abdominal pain + reflux) - prior to this NOT any significant episode of anxiety/depression

on medication: emotional-sexual numbness, total inability to cry, +8 kg, fatigue -> abdominal pain gone

02/2015 - 1/04/2015 tapering from 10 mg to 0 mg doctor advised

05/05/2015 huge anxiety, burning skin sensation, panic, fear, not able to cry again, never-had-before insomnia, totally lost appetite, little loss of vision in one eye, sweating, chest pain, short breath, restlessness, accelerated heartbeat, mild akathisia legs-feet

30/05/2015 reinstated 8mg (I was suggested 5 mg here)

middle 07/2015 general improving

10/2015 start disastrous too long taper 7mg  11/2015 6mg  12/2015 5mg 1/2016 4mg  2/2016 4mg  3/2016 3mg ->FAIL back to 4mg .... 8/2016 3mg 8/2017 2mg  (short wave in summer '17) 8/2018 2mg stable  8/2019 1mg  1/2020 0.6 mg 

1/APRIL/2020 0mg FREE!

7/2020 - 10/2020 MILD WAVE(mostly anxiety, poor sleep)

6/2021 - 9/2021 WAVE (anxiety, severe insomnia, total loss of appetite, deep depression, internal restlessness, anhedonia)  0.125g triazolam  2 times

18/03/2022 WAVE (anxiety, severe insomnia, total loss of appetite, PAIN in muscles and nerves, arms and right leg,cannot exercise,hard to walk) 0.125g triazolam 3 times

7/5 rein 0.1mg

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Thank you fo your concerns. Where I live lyme is not very common. I'm not the outdoor type either. I will ask my doctor again if I should be tested.

Started Effexor August 2012 Sept'12-150mg=extreme anxiety Oct'12 cut half-75mg severe wds

Feb 2013 68.5mg. Mar'13- 65mg. Apr'13-59mg. May'13-57mg. June '13-52mg Aug'13 49.75mg.

Sep'13-48.75. Nov'13-47mg Dec'13-45..5mg

May 2014 42mg. Jun'14 40mg (depressive mood started). Aug'14 -40mg/ started brintellix 2.5mg

Oct '14 -39 Nov'14 36.89 Dec'14 34.45

Jan 2015- 31 Feb'15 29mg. Mar'15 26.72. Apr'15 24.48. May'15 22.31mg. Jun'15 20.30mg

Aug'15-18.89. Oct'15 16.96. Nov/16- 16.10. Dec/15- 15mg

Jan 2016-14.22. May'16 11.45. Aug'16-9.60. Sep/16- 8.88mg. Oct/16- 8.39mg. Nov/16- 8.13. Dec/16- 7.89

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  • Moderator

I've also heard about using colloidal silver to boost the efficacy of antibiotics.  People who cannot take antibiotics use colloidal silver to help kill infections, and it is supposedly effective against lyme.

 

The other treatment which is rampant here in Australia - probably because mainstream doctors don't or won't diagnose it - is Rife Machine therapy.  Supposedly the practitioner dials up the right frequency to kill the spirochetes, and the Rife "zaps" them, over a course of treatments.  Rife is like the #2 treatment for Lyme in Australia.

 

Sadly, there is a lot of quackery involved with Rife - and it's hard to tell the real ones (if there are any) from the fake ones.

 

In Italy - can you get to Germany? There are excellent Lyme clinics there.  There is one in particular which combines treatment with regular medicine, synergized with herbal and chinese medicine, infrared therapy, heat and cold treatments, and optimized for the best time of day for treatments.  They have incredible success rates with even cancers.  It's expensive, though.  It would be, as you'd be inpatient for 2 weeks for Lyme (more for cancer)

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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I was diagnosed with Lyme Disease, Bartonella and Babesia (Lyme co-infections) in December 2014.  I went to see a Lyme literate Naturopathic doctor.  As Lyme disease and its co's are usually diagnosed based on symptoms he was quite sure I had it.  However, I did have the rash, then the flu-like symptoms, tingling in my head and then all my symptoms got progressively worse.  He also took about 10 vials of blood and sent them to Igenix Labs and they came back positive.  In the beginning I attempted to treat it with a very condensed Cowden protocol but reacted badly to that.  I was then put on a three month course of Minocycline and I reacted to that.  Up until just recently I haven't been treating Lyme etc. due to attempting to taper off my psych meds.  However, I have started using a Rife machine very slowly as when I went to fast I started herxing (a reaction when the bugs are dying off and dumping all their toxins into the bloodstream) and this can be very debilitating.  I have suffered horrendous symptoms and I am not sure if they are coming from the withdrawals from my meds (I was taking Seroquel, Gabapentin, Remeron, Zoplicone and Cortef) and came off of them too quickly.  I am now taking just Seroquel and Remeron and want to get off of them as soon as I can as I feel they are making me worse.  I am hoping the Rifing will be the answer as I have spoken to several people who say this is what worked for them.  I have tried a lot of different remedies for the withdrawals and so far nothing has worked.  I am in late stage Lyme Disease and don't know how long I have had it as I started suffering from severe anxiety/panic attacks when I was about 10 years old.  It was then that we would go camping for a month and I don't believe I was ever checked for ticks but was taken to a psychiatrist who put me on Dalmane due to my sleeping difficulties and left me on it.  I have suffered on and off for most of my life with these attacks and am now wondering if it was indeed Lyme Disease way back then.  It is not only ticks that carry it now.  You can get it from fleas, dust mites, mosquitos, vermin and the list goes on.  It is possibly curable if you catch it within a week or so otherwise the treatment can be long, debilitating and expensive. 

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  • 2 years later...

I was just diagnosed with Lyme and barbesia. This plus two years bedridden with withdrawal is almost too much.  

Effexor XR 300 (brand) mg & various SSRIs 15 yrs (Effexor XR 300 mg past 10 yrs

Clonazepam, 1.0 mg. am, .5 mg pm. - 15 yrs, 7-17-16- Began .5 three times a day

Vyvanse 60 mg, - 2 yrs, Cut to 50 mg for 6 mths, Cut to 30 mg. on 4-1-16. Tapering.

Approx. 4-1-15 began Effexor XR 300 taper, very slowly for a year. Held at 37.5 for about 3 mths. Cut to 18 mg for 2 wks to 0. WD began 2 wks later. Depression, anxiety, paranoia, low appetite, nausea.

7-14-16-Reinstated 5 beads Effx after 4 mths misery.Pooped out 10 days.

9-12-16-to present- Wide eyed terror, bedridden fear, no appetite/feeling of being full.

10-30-16- Began 15% liquid tapering of 30 mg Vyvanse. (25 mg)

11-13-16- Liquid Vyvanse 22 mg,11-27-16- Liquid 15 mg, 12-12-16- Vyvanse 12.5 for 5 days. 12-16 - 12-29, 15 mg.

11-20-16- Switched back to 1.0 clonazepam am & .5 bedtime

12-30-16- Moved to 15 mg COMPOUNDED Vyvanse.Current 4/11-4/25 7.5 mg.(10% ev 2 wks) Off Vyvanse

Current meds:Effexor XR- 3 Beads, Clonazepam-1.0 mg am, .5 mg bedtime,Vyvanse-(tapering) Estradiol- 2

mg,Progesterone 200 mg,Testosterone 30 mg/ml,Nature Throid- 48.75 mg.(12-21-16-65 mg.) (4-18-17-81.25 mg) Current supplements: Fish Oil-1360 mg, Curamin- 2706 mg.

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  • ChessieCat changed the title to Lyme disease
  • 3 weeks later...

The pain from Lyme is debilitating. Well I’m bedridden from this or ct Effexor. Idk. I’ve now developed frozen shoulders. Can barely walk. Tendonitis is spreading body wide. 

I’m so sensitive. How in the world can I treat this and stay alive?

Effexor XR 300 (brand) mg & various SSRIs 15 yrs (Effexor XR 300 mg past 10 yrs

Clonazepam, 1.0 mg. am, .5 mg pm. - 15 yrs, 7-17-16- Began .5 three times a day

Vyvanse 60 mg, - 2 yrs, Cut to 50 mg for 6 mths, Cut to 30 mg. on 4-1-16. Tapering.

Approx. 4-1-15 began Effexor XR 300 taper, very slowly for a year. Held at 37.5 for about 3 mths. Cut to 18 mg for 2 wks to 0. WD began 2 wks later. Depression, anxiety, paranoia, low appetite, nausea.

7-14-16-Reinstated 5 beads Effx after 4 mths misery.Pooped out 10 days.

9-12-16-to present- Wide eyed terror, bedridden fear, no appetite/feeling of being full.

10-30-16- Began 15% liquid tapering of 30 mg Vyvanse. (25 mg)

11-13-16- Liquid Vyvanse 22 mg,11-27-16- Liquid 15 mg, 12-12-16- Vyvanse 12.5 for 5 days. 12-16 - 12-29, 15 mg.

11-20-16- Switched back to 1.0 clonazepam am & .5 bedtime

12-30-16- Moved to 15 mg COMPOUNDED Vyvanse.Current 4/11-4/25 7.5 mg.(10% ev 2 wks) Off Vyvanse

Current meds:Effexor XR- 3 Beads, Clonazepam-1.0 mg am, .5 mg bedtime,Vyvanse-(tapering) Estradiol- 2

mg,Progesterone 200 mg,Testosterone 30 mg/ml,Nature Throid- 48.75 mg.(12-21-16-65 mg.) (4-18-17-81.25 mg) Current supplements: Fish Oil-1360 mg, Curamin- 2706 mg.

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  • 8 months later...

Hi everyone. I'm starting a topic in the event that what I'm learning currently is interesting to anyone else. Given it's taken me a decade of hard work to get here I don't assume most folks here can tolerate (physically because you're in a different stage of healing)  what I'm doing at the moment but would love to connect and share with anyone that perhaps does resonate in some way with this.

 

I've been working on detoxification and clearing and opening up my detox pathways for a decade. It's been slow and rough going for all the reasons y'all know about here. Still I have slowly come to tolerate a whole lot of detox herbals etc. I am now actually responding quite well to pretty hard-core Lyme disease protocols (Stephen Buhner's work as inspiration) ... however I had sort of accidently put together half the protocol before I realized that the Lyme's folks were doing the same thing.

 

of note: I did NOT test positive for Lyme. this is not considered unusual from what I'm learning...even among folks who have it. 

So I never pursued this earlier...thing that is becoming clear however is that I have very deep pockets of  BIO-FILM with multiple infectious agents involved and for a time heavy metal too. I seem to have largely gotten the metal out...but I clearly still have some very deep and nasty bio-films that I can now treat with this modified variation of a lyme protocol (along with my own design which was happening before I connected with the Lyme community)

I have no idea if I have Lyme...I know I have infections that act like Lyme, however.

 

anyway...if anyone has experience that might help us figure out what is going on for those of us who do, indeed, remain ill a long time and also have a lot of infections. 

 

I ended up doing a post: https://beyondmeds.com/2019/02/27/detox-withdrawal/   (it has some additional comments etc)

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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GiaK,

 

I was also suspected of having Lyme but my results came back negative as well. I do plan on getting retested with Igenex sometime in the near future, if this fatigue does not lift. Apparently the run of the mill tests you get from a GP only test you for the thre most common tick borne infections and there are 18 or so. Igenex labs tests for all the strains common to ticks. These can be done through your GP or a functional medicine practitioner I believe. Though I do not have any info  per your request, I do have some insight into Lyme and related issues from your post.

 

From my research regarding detoxification, Lyme and illness etc I have learned a few things. For one,  Lyme can and does exist in many people who don’t even feel ill, it is just lying dormant in there and waiting for something to trigger it—usually an emotional or physical trauma.  I have heard similar things regarding the Epstein Barr virus. I do not know how much of this is research/evidence based or just speculation. Even the LLMDs or ME/CFS specialists still don’t know everything (though the bad ones will claim they do). So it is plausible that you may carry one of the Lyme strains without receiving a positive test. I fee most doctors and specialists would agree that If you think you may have Lyme, you are obviously  not feeling well and something isn’t going right in your body. A Lyme detox couldn’t hurt you, in my unprofessional opinion. 

 

I have also learned from several detox specialists that the ticket to eradicating  heavy metals and Lyme from the body is to first ensure your gut microbiome is stable and that you have done significant work on gut healing protocols prior to working on any sort of heavy metal issue. Apparently chelating heavy metals and engaging in Lyme detox protocols prior to healing a bad or leaky gut or even a minority malfunctioning gut can be disastrous and lead to awful detox reactions and increased levels of sickness. 

 

in regards to biofilm, I know nothing other than it is not supposed to be inside of you, and if you have it, you are infected with something that should also not be inside of you.  At least that is my understanding. 

 

 

Hope this is of some benefit to you on your journey. I myself just started mine and wish I didn’t have to be sick but hoping one day I will learn something from this hellish experience. 

 

 

2001-2017-worked my way up from 25mg of zoloft and 2mg of Concerta to 200mg of zoloft and 36mg of Concerta

February 2017-Stopped Concerta cold turkey

September 2017-Added 2mg of Abilify

November 2017-came off Abilify

December 2017-began taper of zoloft 50mg a week while tapering on to Viibryd

January 2018-back on zoloft 200mg

February 2018--tapered off zoloft over a month onto 40mg of prozac

April 2018-CT prozac due to suspected "serotonin syndrome"

 

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This is interesting,  I to had thought about lyme.  I have been bitten several times and had them removed.  Where I'm from, a large percentage of the ticks do test positive for lyme and many other things.  I was tested once,  but the test came out negative, this was a number of years ago . I'm understanding now  that the tests are fairly unreliable . This might be worth a second look . 

Lexapro 1 1/8 mg and 10 mg Propranolol. I jumped down to 2.5 mg lexapro from 5 mg on oct 2 where I had been for 7 months and went from 2.5 mg to 1 1/8 mg not sure when maybe around nov 2 went back up to 2.5 mg December 30 . May 13 small cut lexapro 2.5 mg down to 2.4 mg 9/4/14 dropped 8.33% to 2.2 mg 10/13/14 dropped to 2mg lexapro. Back up to 2.2 mg 10/15/14. Dropped to 2 mg lexapro 11/26/14. Dropped 10% to 1.8 mg lexapro 1/11/15. 2/23/15 . Cut of 5%.

3/11/15 cut of 5% 5/3/15 cut of 5% 6/3/15 cut of 5% 7/19/15 cut of 5%. Continued small cuts of 5% every six weeks or so untill October 8th 2016 ,last dose . Last dose was 0.8mg. Currently taking 10 mg propranolol in the afternoon. 1400mg fish oil. 250 mg magnesium, 250 mg L-Taurine, 500 mg Tumeric. 40 mg Zocore simvistatin.

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Oh thank you.

 

I too have learned a whole lot about detoxification but our bodies injured as they are by these drugs resist detox and in fact go into overload which puts our bodies into greater taxation. This actually may have a lot to do with sensitivities we're in overload and so we are sensitive to everything. My issues with detox and having taxed detoxification pathways has clearly been a major cause of my extreme sensitivities.

 

And yes you have to heal the gut but when your entire body and system is broadly impacted as ours are it takes years.

 

Anyway another thing has become clear to me is that there are a lot of varieties of chronic illness that have in part strange biofilms that house chronic infections in our bodies that cannot be reached nor found by regular testing most of the time

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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  • 1 month later...

Does anyone know if you can detox while still on the medications and tapering? 

04/10 Luvox 25 mg PM, Nortriptyline 1 mg PM

03/08/19: Buspar 2.5 mg AM, 5 mg PM

01/01/19: Xanax 0.125 AM 5 times a week. Occasionally, 0.125 twice a day AM & noon

12/18 Armour Thyroid 60 mg (for hypothyroidism) 

 

Supplements: B Complex, B12 (adeno), multi-vitamin, D, Adrenal Cortex, iron

  • Lexapro 20 mg 2007 - 2013 with various attempts to stop
  • 2013 found a new Dr and started trying other meds: Prozac, Notryptoline, Effexor, Buspar, Gabapentin, Paxil, Nardil
  • Lexapro 15 mg 2015 - 04/2016
  • Vibryiid 10 - 15mg 05/16-06/16 
  • NO MEDS 07/16 - 10/31/16
  • Reinstated 10/31/16 at 2.5 mg lexapro, increased to 5 mg   
  • 1/13/17 switched to Luvox 50 mg before bed
  • 1/20/17 Luvox 37.5 mg PM
  • 12/18 Luvox 10 mg PM, Nortriptyline 2 mg (started Nortriptyline 06/17 at 10 mg)
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Absolutely. You should not do anything radical but you can start changing your diet and adding spices that help cleanse and eating real good food. That's really the place to start for everybody. One hopes one doesn't have to go further than that but if one hasn't even started that's the place to start and hope that you never have to do anything radical because it gets very complex but it probably should not start when you are on drugs I would start slow and easy with dietary changes.

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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Detoxing will def help the liver clear both the drugs and the stress hormones that are hyper regulated while we taper. 

I have lots of experience detoxing over the last 6 years of Lyme disease. 

I would take it easy as I would imagine for those of us having a tough time with withdrawal we are not good detoxers and may have blocked pathways - which can be gently encouraged. 

 

I would seek seek out a good Naturopath or Functional Medicine Dr to navigate this. 

Sydney, Australia.

Lexapro 5mg since August 2014 for Lyme disease - wasn’t depressed. 

klonopin/ rivitrol since Nov 2013 for brain pain from Lyme disease

Attempted lexapro slow taper from July 2018 - dropped to 2.5mg, increased days in between doses. Jan 2019 went down to 1.25mg daily. 

Withdrawal symptoms started 4-6 weeks later; extreme anxiety, cognitive issues with focus, confusion, memory, DR/DP,  headaches, exhaustion, sore watery eyes, body pain, muscle spasm, relentless diarrhoea, so so tired,  neck and head pain, zaps, can barely stand up. 

Have re- instated lexapro to original 5mg dose on Dr’s advice, 1 week. Symptoms have not stopped yet. 

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  • Administrator

Very sorry to say we don't know anything about treating Lyme or detoxing for Lyme here. It can be quite complex.

 

Generally, we're not enthusiastic about detoxing as it can be hard on your nervous system and body, making psychiatric drug withdrawal symptoms more uncomfortable. Unless you have a real liver disease, your liver does an excellent job of clearing toxins without interference. I wouldn't mess with it.

 

If you want to pursue Lyme treatment or detoxing for other reasons, you'll have to consult a naturopath or functional medicine doctor, as Jera suggested. If this complicates psychiatric drug tapering or ramps up symptoms related to psychiatric drug withdrawal, you'll have to work with that practitioner about that as well.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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No thank you I'm doing just fine on my own I left practitioners behind a long time ago. I have some friends who are knowledgeable and consult with them that's about it these days. Lyme and associated co-infections (and similar constellations of various micro-organisms) are going to be common among those of us who are ill for many years that's what I'm learning. we need to get on board with this stuff. Especially people with histories of so-called psychosis.

 

Not that that has to happen here but being aware that it's part of the phenomena in folks who are extremely ill is a good idea. Hardcore detox early on is impossible and that's part of the problem we need to learn how to do it really gently over periods of years and that's exactly what I and some others that I am familiar with have had to do. This is outside the scope of what people can even handle so I don't talk about it much I've gone pretty much underground in order to take care of myself and others who are dealing with this kind of stuff

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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I do still talk to Prey occasionally -- he's really become a wonderful and supportive friend who hears and trusts this process -- that is priceless of course.

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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I'm also doing better than I've done and then entire 10 years. I'm doing great this spring --- winter was rough but I've come out of it having opened all my detox Pathways for the first time in a decade and that's after relentlessly working on it.

 

Detoxication pathways get clogged up in a lot of different ways that Western medicine doesn't really understand. Mine are finally clear which means I actually understand something about this that I didn't when I started and that is a cause for celebration. 

 

So happy to be alive! 🤩

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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Oh! Lastly if people are interested in this line of thought Stephen Harrod Buhner has written multiple books on herbal antivirals antibiotics etc. They can be found on Amazon everything he writes is fantastic. He was also interviewed by Paris Williams author of Rethinking Madness and that is at least in part on Mad in America somewhere.

 

He also has a book on Altered States and plant medicine which I haven't read but I hope to at some point. Anyway he's the most awesome herbalist I've encountered and understands a lot of our (madness) issues intuitively it seems it wasn't his background.

 

 

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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by the way, with this sort of detox professionals are often even more dangerous then normal...they have no idea how delicate our nervous systems are. and to follow their advice would generally be catastrophic..it's fine to consult with them but any advice should be taken with a very large grain of salt there  are not people who know what is going on in our bodies and detox is not something to enter lightly

 

the safest folks to consult are ayurvedic and chinese medicine practitioners since those are two traditions that have been dealing with this sort of thing for a millenia...however, again, because of our drug injuries they've never seen the likes of us and it's best to proceed with caution and get to know our own bodies very very well...our bodies know how to proceed and will guide us...even through these treacherous waters...it's taken me a decade of mindful presence to get to this point and that, well, is simply the journey as it is for me. We are all different. I have a great friend/practitioner of Chinese Medicine. he's actually an instructor at the school here as well...very astute man...the way he helps is by listening and then telling me what the Esoteric Chinese literature says...he has no idea how to otherwise direct me...it's a friendship...and we're colleagues...he does not work with me as he does most people as he says those of us these sorts of paths are learning self-mastery. I am in agreement at this point. It ain't no easy trip. 

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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  • Altostrata changed the title to Lyme disease and healing from withdrawal
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