MrMiyagi: 20+ years Effexor XR

[MrMiyagi]

I would agree in every aspect with moderators and members that support 10% reduction or less. If any one is reading this before attempting to tapper please refer to the forum guides. 

 

Thank you Alto 😊 

 

[MrMiyagi]

Rock Bottom again 😢 I think I may have had an underlying condition of ME/CFS I seem to have had chronic fatigue and exercising intolerance my entire 20 years of being on Effexor XR. The ME is terrible and I have been bed bound since July, 2020 that was my original crash that left me with paralysis/extream weakness and fasticulations in legs followed by parkonsism symptoms. Some symptoms gradually improved but I have yet to have a day sitting up or walking more then an hour. 

 

Hopefully things change I'm looking for new doctors.

 

Mistskes ive made during the Effexor withdrawl. 

 

1. Cross Taper over 6 months 

2. Add Benzo 

3. Get admited and swaped to Paxil 20mg

4. Add Gabapentine 

5. Tapper benzo 10 to 6.5mg In one month Nov,2020.

 

Has any one developed ME/CFS wile on SNRI for long time? If so have you recovered ?

 

 

If there was a window it was sealed up 6 months ago 😥. 

 

 

[Aurorax]

I had exercise intolerance on Paxil and during the first years of wd, and I know this is quite common.  I'm not a doctor, but I wouldn't assume this is ME/CFS unless you got these symptoms after an infection. It seems like your symptoms started with the drugs, just like they did for me.

 

I had severe muscle weakness/low muscle tone and had to eat in bed the first 4 years off Paxil. I couldn't sit upright until a few more years due to postural instability, muscle tension, pain, and so on. I couldn't walk for more than 5-10 min. (I had a hard time walking to the bathroom during acute wd)

 

I never had these symptoms before Paxil, and they followed my dose-changes in an obvious way. I also had many other typical wd symptoms like brain zaps and visual hallucinations, so I'm very confident I didn't have ME.

 

You are still tapering. There is a good chance that you will start to see improvements when you have been off the drugs for a while. Who knows, you may recover quickly once the poison is out of your system. My healing started when I was 100% drug-free. It was a very gradual recovery over the years, but I'm more or less back to normal now.

 

If I could heal, so can you! ❤️

 

Aurorax

 

[MrMiyagi]

1 hour ago, Aurorax said:

I had exercise intolerance on Paxil and during the first years of wd, and I know this is quite common.  I'm not a doctor, but I wouldn't assume this is ME/CFS unless you got these symptoms after an infection. It seems like your symptoms started with the drugs, just like they did for me.

 

I had severe muscle weakness/low muscle tone and had to eat in bed the first 4 years off Paxil. I couldn't sit upright until a few more years due to postural instability, muscle tension, pain, and so on. I couldn't walk for more than 5-10 min. (I had a hard time walking to the bathroom during acute wd)

 

I never had these symptoms before Paxil, and they followed my dose-changes in an obvious way. I also had many other typical wd symptoms like brain zaps and visual hallucinations, so I'm very confident I didn't have ME.

 

You are still tapering. There is a good chance that you will start to see improvements when you have been off the drugs for a while. Who knows, you may recover quickly once the poison is out of your system. My healing started when I was 100% drug-free. It was a very gradual recovery over the years, but I'm more or less back to normal now.

 

If I could heal, so can you! ❤️

 

Aurorax

 

Thank you Aurorax ❤  I did have alot of the symptoms of Me/cfs during my years on Effexor xr but they were tolerable and I always just thought they were side effects from effexor xr perhaps they were?  But when I started to taper effexor during exercise I would get close to blacking out very scary stuff then the paralysis stuff and twitching fml. 

 

I think the hardest part is not knowing what's what people start to question if it's all just psychological in nature. 

 

I do thank you for your response Aurorax it its small responses like yours that give me hope and encouragement 😊

 

 

[Aurorax]

There will always be people telling you this is psychological in nature. I spent 8 years on Paxil trying to cure my "psychological" problems that turned out to be side effects and wd symptoms.

 

Unfortunately, no one can tell us what is what, no matter their expertise. The only one knowing your body and mind is you. The problem is we have often lost that connection to ourselves and our bodies after years on drugs. I doubted myself a lot until I was off the drugs and could reconnect with myself again. So I can relate a lot to the uncertainty you are feeling.

 

What is your plan going forward?

 

Aurorax

[MrMiyagi]

1 hour ago, Aurorax said:

There will always be people telling you this is psychological in nature. I spent 8 years on Paxil trying to cure my "psychological" problems that turned out to be side effects and wd symptoms.

 

Unfortunately, no one can tell us what is what, no matter their expertise. The only one knowing your body and mind is you. The problem is we have often lost that connection to ourselves and our bodies after years on drugs. I doubted myself a lot until I was off the drugs and could reconnect with myself again. So I can relate a lot to the uncertainty you are feeling.

 

What is your plan going forward?

 

Aurorax

I'm hoping to stabilize a bit more before dropping again but I'm getting the recommended scale and using the file to tapper 10% a month or longer.

 

Paxil 20mg has been steady since November 1st.

 

I was currently working on my valium tapper since I've been on it going on 6 months. I  started out with 5mg Valium twice a day then in November I dropped down weekly to reach 6.5mg. Then in December i dropped .5mg and switched to 3 times per day. So I take 2mg Valium 3 times a day now. 🙃 sorry if it's confusing my brains like oatmeal.

 

 

[MrMiyagi]

Current Daily Regiment:

 

(8am)

Paxil 20mg

Valium 2mg

Gabapentine 300mg

(1pm)

Valium 2mg

Gabapentine 300mg

(6pm)

Valium 2mg

Gabapentine 300mg

 

Probiotic, and juicing may add vitamin C,

Currently holding in a big wave.

[Aurorax]

These drugs can turn any brain into oatmeal. Or chia pudding. 🙂 But don't worry, it made perfect sense.

 

Sounds like you have a good plan! I really hope this wave passes by quickly. Let us know how you are doing, and feel free to PM me any time. ❤️

 

Aurorax

[MrMiyagi]

Last dose Effexor XR 150mg February 2020

Last dose Zoloft 50mg. October 25th 2020

November 2020 Decrease Valium by 4.5mg in and an additional. 5mg in December also change Regiment to three times a day.

 

 

(8am)

Paxil 20mg

Valium 2mg

Gabapentine 300mg

(9:30am) lethargic and exhausted back to sleep can't keep eyes open

(11am) woke up  

(1pm)

Valium 2mg

Gabapentine 300mg

(2pm) blurry vision CN just feels taxed like I've gone through rounds of chemo.

(3pm)back to sleep 0 energy

(5:30pm) awake 

(6pm)

Valium 2mg

Gabapentine 300mg

Feeling more energy and less toxic.

 

I seem to feel withdrawl normal at night with a short wave that hits every now and then by (8pm)

 

I want to get out of bed and walk to exercise but fear getting smashed with these episodes of extreme fatigue 😩 

 

crappy crappy 😑

 

 

 

[MrMiyagi]

Very informative and helpful 👍

 

 

[MrMiyagi]

Brief window a few days ago but unfortunately today I crashed and ended up in ER studdering, weakness, muscle twitching, Joint pain, dry eyes sore throat, visual blurred. Very disheartening only had some elevated ck levels that may indicate muscle neuron type disease or nay just something else?

 

Holding on, keeping faith, but growing weak 

[MrMiyagi]

Throw in some burning and some how cold skin today and that about raps it up fml.

 

Think It's all Effexor wirhdrawl and kindling but I never could imagine my nervous system taking such a dive being so young and athletic. I cannot stop to think there is a combined issue perhaps a lyme coinfection or something not regularly tested for ? 

 

Stinks you have to pay outta pocket for a specialist to do testing. I did order a metal allergy test for my spinal hardware so will see if that's involved. 

 

Starting to wonder if the rabbit hole go's deeper 🤔😳

[MrMiyagi]

21 hours ago, MrMiyagi said:

Brief window a few days ago but unfortunately today I crashed and ended up in ER studdering, weakness, muscle twitching, Joint pain, dry eyes sore throat, visual blurred. Very disheartening only had some elevated ck levels that may indicate muscle neuron type disease or nay just something else?

 

Holding on, keeping faith, but growing weak 

Elevated CK most likely adverse reaction to Gabapentine. Once again very sensitive nervous system and kindling with other medications seems to limit progress. O how I should have listened to advise 😕. 

 

Ck level was 199 U/l is 174 so not much at all. I'm becoming tired of health anxiety 

[Aurorax]

22 hours ago, MrMiyagi said:

Brief window a few days ago but unfortunately today I crashed and ended up in ER

I'm sorry you are having such a hard time. Have you had a cyp test? I wouldn't be surprised if this is wd and kindling, but you may want to make sure you can metabolize the drugs properly.

 

19 hours ago, MrMiyagi said:

I cannot stop to think there is a combined issue perhaps a lyme coinfection or something not regularly tested for ? 

 

I got a Lyme test after a few years of wd just to get peace of mind. It came back negative. I eventually got Lyme in 2019 after a tick bite (followed by erythema migrans) and that was very different from wd, although a few symptoms were somewhat similar (I'm fine now). Testing for Lyme is very complicated, and you always run the risk of false-positive results. I wouldn't bother unless you have had a tick bite or been in areas with lots of infected ticks. But that's just my personal opinion.

 

Aurorax

[MrMiyagi]

3 hours ago, Aurorax said:

I'm sorry you are having such a hard time. Have you had a cyp test? I wouldn't be surprised if this is wd and kindling, but you may want to make sure you can metabolize the drugs properly.

 

 

I got a Lyme test after a few years of wd just to get peace of mind. It came back negative. I eventually got Lyme in 2019 after a tick bite (followed by erythema migrans) and that was very different from wd, although a few symptoms were somewhat similar (I'm fine now). Testing for Lyme is very complicated, and you always run the risk of false-positive results. I wouldn't bother unless you have had a tick bite or been in areas with lots of infected ticks. But that's just my personal opinion.

 

Aurorax

Yea im Lyme positive for 6 IGg bands

And equivocal for iGm portion?

Just waiting on a call from a PA

 

Never had any bands positive in previous test so maybe I got the bug 🐛🤔

[MrMiyagi]

Lyme Positive 0 active bands in 2017 to now have 6 on western blot igG and 1gM

🤷‍♂️

Starting doxycycline 100x2 for 30days

Hoping photosensitivity, joint pain, and chronic fatigue, get better. I'll keep updating any improvements 

 

[Aurorax]

I don't wish Lyme upon anyone, but this might be good news. I hope you will see improvements soon! I took doxycycline for 10 days and then 10 more days a few weeks later. I saw improvements quickly, but it took about 6 months until I was back to normal, so give it some time.
  Now I'm recovering from Covid ... Really looking forward to a wd and bug-free 2021. 🙂

 

Aurorax

 

[MrMiyagi]

1 hour ago, Aurorax said:

I don't wish Lyme upon anyone, but this might be good news. I hope you will see improvements soon! I took doxycycline for 10 days and then 10 more days a few weeks later. I saw improvements quickly, but it took about 6 months until I was back to normal, so give it some time.
  Now I'm recovering from Covid ... Really looking forward to a wd and bug-free 2021. 🙂

 

Aurorax

 

Thank you my friend 😊 here is to a withdrawl and bug-free 2021🍷🍾

[Aurorax]

11 hours ago, MrMiyagi said:

here is to a withdrawl and bug-free 2021🍷🍾

 

Thank you ❤️

[christianjw12]

On 3/14/2021 at 12:08 AM, Aurorax said:

I don't wish Lyme upon anyone, but this might be good news. I hope you will see improvements soon! I took doxycycline for 10 days and then 10 more days a few weeks later. I saw improvements quickly, but it took about 6 months until I was back to normal, so give it some time.
  Now I'm recovering from Covid ... Really looking forward to a wd and bug-free 2021. 🙂

 

Aurorax

 

 

Wow @Aurorax, you've had antidepressant withdrawal, Lyme and now Covid.. you've gone through lots of hard sickness lol.

 

I'm still in withdrawal after almost 1 year of Lexapro free (I only took it for 3 months and at 10mg, so at a standard dose).

Just like you, I had got bitten by a tick in June 2020, and I removed it only the next day after a hiking session in a forest. I didn't have the erythem, but I went to see a doctor, and he prescribed me 3 weeks of Doxycycline at 100mg in case I get the infection. After almost 1 year of withdrawal, I still get some weird symptoms like fatigue and hand numbess, so I sometimes wonder maybe it's not withdrawal but I've had Lyme since June 2020 but the odds should be low since I was treated immediately with antibiotics and people with Lyme told me they have violent joint pains and headaches, which I don't have.

 

 

[MrMiyagi]

2 hours ago, christianjw12 said:

 

Wow @Aurorax, you've had antidepressant withdrawal, Lyme and now Covid.. you've gone through lots of hard sickness lol.

 

I'm still in withdrawal after almost 1 year of Lexapro free (I only took it for 3 months and at 10mg, so at a standard dose).

Just like you, I had got bitten by a tick in June 2020, and I removed it only the next day after a hiking session in a forest. I didn't have the erythem, but I went to see a doctor, and he prescribed me 3 weeks of Doxycycline at 100mg in case I get the infection. After almost 1 year of withdrawal, I still get some weird symptoms like fatigue and hand numbess, so I sometimes wonder maybe it's not withdrawal but I've had Lyme since June 2020 but the odds should be low since I was treated immediately with antibiotics and people with Lyme told me they have violent joint pains and headaches, which I don't have.

 

 

I believe testing for Lyme is extremely difficult so it's hard to get a definitive diagnosis. I developed or reactivated Neuro-lyme my symptoms included extream joint pain, muscle weaknes,  headache, muscles just stopped working, low grade fevers and extream psychological issues. On week 1 of doxycycline all my psychological issues are gone. I still have fatigue and joint pain and abnormal gait but seems a little less same with some of the muscles from my cervical.

 

Been using the tens unit to focus on muscle activation of the muscles I lost control of. I'm guessing it was long thoracic nerve palsy?

 

Any how it's always good to get a reputable lab to check I tested positive on standard cdc lab but I hear better results from igenx.

 

I wish you best of luck on your recovery.

 

 

[christianjw12]

35 minutes ago, MrMiyagi said:

I believe testing for Lyme is extremely difficult so it's hard to get a definitive diagnosis. I developed or reactivated Neuro-lyme my symptoms included extream joint pain, muscle weaknes,  headache, muscles just stopped working, low grade fevers and extream psychological issues. On week 1 of doxycycline all my psychological issues are gone. I still have fatigue and joint pain and abnormal gait but seems a little less same with some of the muscles from my cervical.

 

Been using the tens unit to focus on muscle activation of the muscles I lost control of. I'm guessing it was long thoracic nerve palsy?

 

Any how it's always good to get a reputable lab to check I tested positive on standard cdc lab but I hear better results from igenx.

 

I wish you best of luck on your recovery.

 

 

Thanks for your answer @MrMiyagi, I don't think I have Lyme because I didn't have any joint pain or muscle weakness.

Moreover, I get muscle weakness and fatigue only from day to day, I think it's more related to withdrawal. Some doctors told me that if Lyme isn't treated, the joint pain are so extreme that I wouldn't have been able to walk and get bedridden.

[Aurorax]

On 3/21/2021 at 7:00 PM, christianjw12 said:

Wow @Aurorax, you've had antidepressant withdrawal, Lyme and now Covid.. you've gone through lots of hard sickness lol.

 

You can add Cryptosporidium and an Ascaris lumbricoides infection to the list lol

 

Mother Nature: Don’t tell me she survived that Paxil wd ... SEND THE BUGS!

 

On 3/21/2021 at 9:21 PM, MrMiyagi said:

On week 1 of doxycycline all my psychological issues are gone. I still have fatigue and joint pain and abnormal gait but seems a little less same with some of the muscles from my cervical.

 

Wow, that’s great news! I hope you see more improvements soon.

 

Aurorax

[MrMiyagi]

Waves and windows still with Pots Dysautonomia still continue also still positive for lyme and getting spinal tap to check for fluid infection and other causes. 

 

Very disappointed 😞  current regime:

 

8am

Paxil 20mg

Valium 1mg.

Gabapentine 300mg.

 

1pm

Valium 1mg.

Gabapentine 300mg.

 

6pm

Valium 1mg.

Gabapentine 300mg.

 

 

The withdrawal from 17 years Effexor must have crashed my body real hard and let all this stuff thrive is the only explanation I can think of. I wish I could sue for this I should never have been prescribed 17 years by NY GP without frequent consulting. Any how sorry guys unless somthing else shows in my spinal tap I will keep you posted. 

 

The jury is still out but windows are lasting longer only bummer is I'll have to go through it all again with Paxil and Valium 🤦‍♂️

I swear pharmaceuticals companies are all about money.

[Acsr]

Hi 👋!! I’m exactly like you ! I tested positive for Lyme , I’m bedridden with cfs/ and Pots. I weaned off an antidepressant November 2019 after 6 months I crashed with extreme fatigue, diarrhea ect ... I didn’t know if o got covid at that time. 
I’m still on 2 drugs seroquel and a benzo but I’m afraid of tapering cause I’m just so weak. I’m waiting to my arminlabs tests to check co-infections. Scared of antibiotics, basically I feel trapped. I’m also training myself to sit and trying to gradually walk but my crashes are aweful I just completely paralyzed with fatigue for days. 
whats is causing what is killing me , cause I wish I would be sure of what’s going on to have some peace of mind and do the right things... 

 

let me know how you are doing then we can help each other. I hope you found some answers soon . 
 

❤️

[MrMiyagi]

39 minutes ago, Acsr said:

Hi 👋!! I’m exactly like you ! I tested positive for Lyme , I’m bedridden with cfs/ and Pots. I weaned off an antidepressant November 2019 after 6 months I crashed with extreme fatigue, diarrhea ect ... I didn’t know if o got covid at that time. 
I’m still on 2 drugs seroquel and a benzo but I’m afraid of tapering cause I’m just so weak. I’m waiting to my arminlabs tests to check co-infections. Scared of antibiotics, basically I feel trapped. I’m also training myself to sit and trying to gradually walk but my crashes are aweful I just completely paralyzed with fatigue for days. 
whats is causing what is killing me , cause I wish I would be sure of what’s going on to have some peace of mind and do the right things... 

 

let me know how you are doing then we can help each other. I hope you found some answers soon . 
 

❤️

It is great to meet someone with similar issues I will definitely keep you posted. I am still also confused as to the main cause but I believe it maybe extream form of dysautonomia pots ? I'm currently trying to cat h a breath curled in bed hugging a pillow my darn rib cage is tight and feels like I'm not breathing correctly. Just a crap show over here lol. I'll keep you posted and do wish you a speedy recovery 🙏

[MrMiyagi]

1 hour ago, Acsr said:

Hi 👋!! I’m exactly like you ! I tested positive for Lyme , I’m bedridden with cfs/ and Pots. I weaned off an antidepressant November 2019 after 6 months I crashed with extreme fatigue, diarrhea ect ... I didn’t know if o got covid at that time. 
I’m still on 2 drugs seroquel and a benzo but I’m afraid of tapering cause I’m just so weak. I’m waiting to my arminlabs tests to check co-infections. Scared of antibiotics, basically I feel trapped. I’m also training myself to sit and trying to gradually walk but my crashes are aweful I just completely paralyzed with fatigue for days. 
whats is causing what is killing me , cause I wish I would be sure of what’s going on to have some peace of mind and do the right things... 

 

let me know how you are doing then we can help each other. I hope you found some answers soon . 
 

❤️

Hey also take note of if symptoms exasperat after you eat to check for MCAS that is also common with Lyme ❤

[Acsr]

On 6/12/2021 at 4:05 PM, MrMiyagi said:

It is great to meet someone with similar issues I will definitely keep you posted. I am still also confused as to the main cause but I believe it maybe extream form of dysautonomia pots ? I'm currently trying to cat h a breath curled in bed hugging a pillow my darn rib cage is tight and feels like I'm not breathing correctly. Just a crap show over here lol. I'll keep you posted and do wish you a speedy recovery 🙏

Hi ! How are you feeling? My tests came positive for Lyme , no co /infections rather Riketssia conorii that’s it’s active . I also tested mold and positive as well . I never had joint pain but now I’m experiencing that but I’m also hypermobile. 
I think it’s pots the breathing cause I have it as well sometimes. 
 

i stil don’t know waste to turn … it’s seems that withdrawal mixes with Lyme and Cfs and pots and Eds !!! 
 

im on my limit … and you ? What have you decided? Hope you are getting better ❤️‍🩹 

[MrMiyagi]

On 8/22/2021 at 4:46 PM, Acsr said:

Hi ! How are you feeling? My tests came positive for Lyme , no co /infections rather Riketssia conorii that’s it’s active . I also tested mold and positive as well . I never had joint pain but now I’m experiencing that but I’m also hypermobile. 
I think it’s pots the breathing cause I have it as well sometimes. 
 

i stil don’t know waste to turn … it’s seems that withdrawal mixes with Lyme and Cfs and pots and Eds !!! 
 

im on my limit … and you ? What have you decided? Hope you are getting better ❤️‍🩹 

Hello Acsr, 

 

I am.currently under IV treatment for Nuerolyme verified by spinal tap and blood work I also have Bartonella. Treatment has been rough with little improvement but I imagine the nervous system needs time to heal. I am unsure of the cause of relapse but belive it may have been from the stress of withdrawl from effexor that had left the infection re-emerge. 

 

Currently on:

Paxil 20mg

Gabapentin 900mg

Valium 6mg

And Rocephin for lyme.

 

I will let you know as soon as I see improvements. Also have you Ck levels been elevated? 

 

[Acsr]

On 8/26/2021 at 2:42 AM, MrMiyagi said:

Hello Acsr, 

 

I am.currently under IV treatment for Nuerolyme verified by spinal tap and blood work I also have Bartonella. Treatment has been rough with little improvement but I imagine the nervous system needs time to heal. I am unsure of the cause of relapse but belive it may have been from the stress of withdrawl from effexor that had left the infection re-emerge. 

 

Currently on:

Paxil 20mg

Gabapentin 900mg

Valium 6mg

And Rocephin for lyme.

 

I will let you know as soon as I see improvements. Also have you Ck levels been elevated? 

 

Hi 👋! Thank so much for replying. I hope you are doing better. Did the spinal tap hurts?? I think my case it’s like yours , I also weaned of an Ad before this all happened. I’m so lost I just don’t know what to do anymore. 
I guess I haven’t checked ck don’t know which ones to check . 
 

im thinking of reinstatement like a small dose of the antidepressant but I’m too scared . However I’m severely depressed from being bedridden and with cfs , that I’m thinking a lot of ending my life … 

 

thank you so much for hearing me and let me know how you are feeling, I really wish you are improving! 
 

sending love ❤️ 

[MrMiyagi]

7 hours ago, Acsr said:

Hi 👋! Thank so much for replying. I hope you are doing better. Did the spinal tap hurts?? I think my case it’s like yours , I also weaned of an Ad before this all happened. I’m so lost I just don’t know what to do anymore. 
I guess I haven’t checked ck don’t know which ones to check . 
 

im thinking of reinstatement like a small dose of the antidepressant but I’m too scared . However I’m severely depressed from being bedridden and with cfs , that I’m thinking a lot of ending my life … 

 

thank you so much for hearing me and let me know how you are feeling, I really wish you are improving! 
 

sending love ❤️ 

 

Hi 👋, 

The spinal tap was painful for a few minutes but with all the other pain going on I didn't worry much about it

 I also didn't have any side effects like headaches maybe I was lucky. I was in the same position with the terrible thoughts of self harm and I ended up admitting myself from fear of it. The only thing that has helped is time and patience. I gave just finished 6 weeks IV antibiotics with little improvement in symptoms. I am thinking now perhaps I should also start a reinstatement but after almost two years idk 😐 could it be that after a certain amount of time we are just dependent on the AD ? I understand neuroplastistsity but darn this is a long painful road. I hope you seek help asap for any of the extreamly negative thoughts please 🙏 

 

Feel free to message me anytime 

[MrMiyagi]

On 9/21/2021 at 1:22 PM, Acsr said:

Hi 👋! Thank so much for replying. I hope you are doing better. Did the spinal tap hurts?? I think my case it’s like yours , I also weaned of an Ad before this all happened. I’m so lost I just don’t know what to do anymore. 
I guess I haven’t checked ck don’t know which ones to check . 
 

im thinking of reinstatement like a small dose of the antidepressant but I’m too scared . However I’m severely depressed from being bedridden and with cfs , that I’m thinking a lot of ending my life … 

 

thank you so much for hearing me and let me know how you are feeling, I really wish you are improving! 
 

sending love ❤️ 

Hi 👋 

 

I just wanted to check up on you I hope you are doing well.

[Acsr]

8 hours ago, MrMiyagi said:

Hi 👋 

 

I just wanted to check up on you I hope you are doing well.

Hi ! Thank you so much for being so kind. I’ve been thinking of replying back to you but I’m still recovering from a crash . 
I wish I could say that I’m ok but I’m crying everyday with snowball thinking around my situation . 
I think this is all very complex , don’t know if it’s lyme or withdrawal or tolerance or cfs/ me , and can’t handle a lyme treatment because of interactions and sensitivity to supplements . Also with mold. Don’t know if I should try a reinstatement, and I’m so cfs severely affected that I can’t see a relief from all this.

i can’t see a crack . I’m grieving badly my old life and my body shakes thinking that I will like this for years on end . 
my family it’s very worried so they want me to go to clinic that works with therapists to address my mental health but I’m resistant to that cause I feel that there is no therapy that will  give my life back , or at least 50% of my life would be already very good . 
 

so I’m here with all this mess in my head , denying my realty and only see death as the only solution for this mess. 
I’m doing my best to survive everyday still . I don’t want to die I just don’t want to live like this . I’m sorry if I’m venting and putting this weight on you , I know you are struggling as well . 
 

Do you know tickbootcamp on Instagram ? They have a very good podcast with 200 interviews with people who successful treated Lyme . Also buhner and cowden protocol are good sources . Might be helpful for you .  I wish I could handle the treatments. My main issue is cfs/me and pos exerciontal malaise ( crashes) and pots . 
 

did you decide to reinstate? I think our brains get used to them and like you said withdrawal woke up lyme . 
Are you bedridden as well with cfs? Sometimes I feel the urge to reinstate something tells me it’s withdrawal rather then lyme but then the symptoms are so similar and then also mixed with cfs symptoms… but yes I think our brains are fried !! 
it would be nice if some moderators could give us some advice . 
 

Thank you so much really. It’s good to have someone that cares for us ❤️
 

sending love

[MrMiyagi]

On 9/24/2021 at 12:35 PM, Acsr said:

Hi ! Thank you so much for being so kind. I’ve been thinking of replying back to you but I’m still recovering from a crash . 
I wish I could say that I’m ok but I’m crying everyday with snowball thinking around my situation . 
I think this is all very complex , don’t know if it’s lyme or withdrawal or tolerance or cfs/ me , and can’t handle a lyme treatment because of interactions and sensitivity to supplements . Also with mold. Don’t know if I should try a reinstatement, and I’m so cfs severely affected that I can’t see a relief from all this.

i can’t see a crack . I’m grieving badly my old life and my body shakes thinking that I will like this for years on end . 
my family it’s very worried so they want me to go to clinic that works with therapists to address my mental health but I’m resistant to that cause I feel that there is no therapy that will  give my life back , or at least 50% of my life would be already very good . 
 

so I’m here with all this mess in my head , denying my realty and only see death as the only solution for this mess. 
I’m doing my best to survive everyday still . I don’t want to die I just don’t want to live like this . I’m sorry if I’m venting and putting this weight on you , I know you are struggling as well . 
 

Do you know tickbootcamp on Instagram ? They have a very good podcast with 200 interviews with people who successful treated Lyme . Also buhner and cowden protocol are good sources . Might be helpful for you .  I wish I could handle the treatments. My main issue is cfs/me and pos exerciontal malaise ( crashes) and pots . 
 

did you decide to reinstate? I think our brains get used to them and like you said withdrawal woke up lyme . 
Are you bedridden as well with cfs? Sometimes I feel the urge to reinstate something tells me it’s withdrawal rather then lyme but then the symptoms are so similar and then also mixed with cfs symptoms… but yes I think our brains are fried !! 
it would be nice if some moderators could give us some advice . 
 

Thank you so much really. It’s good to have someone that cares for us ❤️
 

sending love

I am in the exactly the same position as you and I have been bed ridden for the past 2 years. I did do a crosstaper but I think it only further destabilized me. My recent treatment with 6 weeks iv rocephin seem too have little effectiveness in my symptoms unfortunately. I am currently dealing with pain, apathy, extreamly  withdrawn,pots,depression most likely from the confusion and worry about my future.

I have had improvement in certain areas this to me suggest a healing process even if slow going.

[Acsr]

On 10/18/2021 at 4:13 PM, MrMiyagi said:

I am in the exactly the same position as you and I have been bed ridden for the past 2 years. I did do a crosstaper but I think it only further destabilized me. My recent treatment with 6 weeks iv rocephin seem too have little effectiveness in my symptoms unfortunately. I am currently dealing with pain, apathy, extreamly  withdrawn,pots,depression most likely from the confusion and worry about my future.

I have had improvement in certain areas this to me suggest a healing process even if slow going.

Hi ! I’m so sorry you are also being through this … I wish I could have a solution for both of us . With so many things happening is hard to know what it’s causing what … are you still tappering?  
 

I found a doctor who wants to study my case but he wants me to reinstate so I’m not very keen but at same time I just want to give up and someone take care of me. 
 

do you have any doctor who wants to follow you ? I don’t know how weak you are in this moment to endure lyme treatment but there is good information out there . If you want I can send you the links . 
 

Pots it’s awful but the worst for me is pod exercinal malaise… I got anrs and dnrs but my depression it’s so severe that I ended up crying for trying to rewire !! It’s like my brain doesn’t handle any stress , even the good one ! 
 

im still considering reinstatement though , not very sure about it , but if I don’t try I will be always like and if it works ? But if I get worse I don’t think I can forgive myself…I will let you know . 
 

let me know as well how are you doing , stay strong my friend . Stay strong 💪🏼 

[MrMiyagi]

 

Hi,

I have stopped tapering at the moment to let my nervous system settle down to baseline. I have treated the lyme with little improvement so my llmd wants to try to treat the Bartonella I am also unfortunately positive for 😔. I will give it a few months but if I see no benefit I will l most likely caulk it up to just damage from the effexor and lyme and just hope to heal slowly. 

I did ask my psychiatrist about reinstatement but she seemed scared and quickly shook her head no with out giving me much reasons. I suppose after almost two years off that drug it might not be worth the try.

 

Currently on:

Paxil 20

Valium 2mg x3

Gabapentine 300mg x3

 

 I would studder and shake and could stand a few months ago with any stimulating events but that has greatly reduced. If that gives you hope 🙏🏼