LadyBartonella: lyme and WD or all in one

[LadyBartonella]

8: 00 woke up but is was quite stable. 

8:30 I took fluoxetine 20 mg, 0.0006 mg clonazepam 

9:30 anxiety show up 7/10

I got obsessive thoughts:

I began to worry that its bartonella which give the same symptoms as WD, 

I worry that it will be as hard as It was when all this started 

 

I stick to original dosage trazadone. Every day I take 75 mg. Its day 4th. I don't have digital scale so I didn't want dosages to be different. If/ when I will stabilise I will do tapering with digital scale  

 

I just pray it will calm down. 

I wish to hear that my mistake was not huge and I can get stabilise soon. 

 

[LadyBartonella]

15:00 palpitations 4/10 

depression 4/10

anxiety 4/10

 

Till now 2 panick attacks, thet lasted 0, 30- 1 h 

 

[wantrelief]

I thought I'd stop by your thread to wish you well.  I am so sorry for everything you've been through and are going through now. I really hope you stabilize soon.

[LadyBartonella]

4 hours ago, wantrelief said:

I thought I'd stop by your thread to wish you well.  I am so sorry for everything you've been through and are going through now. I really hope you stabilize soon.

thank you,  all of us is fighting for recovery 

 

from 17:00 to 22:00

depression 5/10

anxiety 4/10 

palpitations 6/10 

 

20:00 I took resweratrol ( for Lyme brain inflammation) after that palpitations lessened. 

 

22:15 I took trazadone 75 mg, and other supplements 

 

 

[Shep]

On 8/30/2019 at 9:21 AM, LadyBartonella said:

Before you suggested to start with fluoxetine first, I would like to do that, but I don't know what would be better bcs- trazadone I got  for sleep issues, which now decreased and it make me sleepy all day. Can I tapper trazadone to 50 mg by 10% a month, and then tapper fluoxetine?

 

Benzo- clonozepam I am at 0,0006 mg- after I will stablise a little maybe it time to jump?

after that tapper trazadone to 50 mg (10% monthly)

and fluoxetine to 0

at the end trazadone 50 mg to zero

 

This is an excellent plan, LadyB. Once you stabilize, you can go ahead and get off that tiny bit of clonazepam. 

 

And then make a 10% reduction in the Trazadone, but only do this once you're stable. 

[LadyBartonella]

 

4 hours ago, Shep said:

 

This is an excellent plan, LadyB. Once you stabilize, you can go ahead and get off that

thank you  😊

 

 

[LadyBartonella]

4:00 I woke up I was laying in bed till 7:00

8:00- depression 5/10 sometimes 6/10

anxiety 4/10

palpitations 4/10

 

I am glad  I tapered clonozepam, but still long way to go. I am wondering why I couldn't stabilise for all this time. Depression is the hardest thing, I have no idea why still I have it.

 

 

 

 

 

[LadyBartonella]

12:00

 

anxiety 5/10

dizziness 7/10

palpitations 5/10

light sensitivity 6/10

eyes pain 5/10

 

12:20 Took buner herbs for Lyme- resweratrol, houttunia , sida acuta

 

 

 

 

 

[LadyBartonella]

4/10 burning skin- neck, hands,

4/10 anxiety

5/10 palpitations

5/10 depression

5/10 fatigue

[LadyBartonella]

Woke up took fluoxetine 20 mg, clonopin 0,0006

 

 

09:28

 

fatigue (zmęczenie) 7/10

brain fog (mgła umysłowa) 7/10

 

Lyme & Co

 

scratch on thigh kreska na udzie

intimate infection (infekcja intymna 6/10)

[LadyBartonella]

Because I saw positive reaction after buhner (less depression, less anxiety- more fatigue and mental fog) I continue to use buhner. Still don't start antibiotics, 

It could be also window or positive effect on going back to original dosage.

 

12:40 Took buhner herbs for Lyme- resweratrol, houttunia , sida acuta

[Shep]

21 minutes ago, LadyBartonella said:

It could be also window or positive effect on going back to original dosage.

 

Sounds like the updose is working. 

 

On 9/2/2019 at 3:50 AM, LadyBartonella said:

I am glad  I tapered clonozepam, but still long way to go. I am wondering why I couldn't stabilise for all this time. Depression is the hardest thing, I have no idea why still I have it.

 

Depression is a withdrawal symptom from all psychiatric drugs and it's also a side effect.

 

Now Antidepressant-Induced Chronic Depression Has a Name: Tardive Dysphoria

 

The best you can do is stabilize on what you're taking and then make very slow and careful reductions (10% or less) going forward. This gives your mind/body time to adjust to the changes and to heal. 

[LadyBartonella]

9 minutes ago, Shep said:

The best you can do is stabilize on what you're taking and then make very slow and careful reductions (10% or less)

 

what about trazodone and its slow release form CR? if I will start to cut it, then it will change properties?

[Shep]

6 minutes ago, LadyBartonella said:

what about trazodone and its slow release form CR? if I will start to cut it, then it will change properties?

 

Yes, cutting open any sustained or controlled release pill will cause it to release all of the drug at one time.

 

I've asked other mods who are more familiar with this particular drug for the best way to handle this. 

[street129]

@LadyBartonella

Hi there I'm getting myself hype to start my taper of my drug,  I'm doing my powder to the capsule, I'm not ready for withdrawal.Will be doing a lot 

Of praying. Keep in touch. I  was trying to follow you but I don't see a follow bottom.

[LadyBartonella]

21 hours ago, Shep said:

I've asked other mods who are more familiar with this particular drug for the best way to handle this.

 

Thank you,

I will wait till they will answer.

 

6 hours ago, street129 said:

Hi there I'm getting myself hype to start my taper of my drug

Did you get better after going back on 250 mg? How long did you wait to get some stabilisation?

How did you make this powder?

Did you have Extended-release trazodone at the beginning?

 

04.09.2019

 

7:00 I woke up like always with anhedonia. I work like machine. Telling myself I must go to work, then counting time to go back home, then watch netflix waiting to go to sleep. Then again all the same. I don't remember what it is like to feel normal emotion, to relax , to plan something.

 

I was planning pregnacy 3 yrs ago, I am 34, I don't have much time 😞

 

9:00 fluoxetine 20 mg, clonopin 0,0006 mg

 

Anxiety triggered : someone who asked me for advise at the beginning of her WD. I couldn't help her, bcs I was going into anxiety wave.

 

11:00

 

brain fog 7/10

anxiety 4-5/10

depression 4-5/10

hand skin burning 3/10

palpitations 4/10

light sensitivity 4/10

 

 

[LadyBartonella]

12:30

light sensivity 6/10

brain fog 7/10

depression 7/10

 

12:40

Took buhner herbs for Lyme- resweratrol, houttunia , sida acuta

[Altostrata]

Trazodone immediate-release has a half-life of about 7 hours. The extended-release form has a half-life of 10 hours. That is not a big difference.

 

If you cut an extended-release tablet, a piece probably will act like immediate-release trazodone. Lots of people take immediate-release trazodone. You may or may not feel the difference.

[street129]

12 hours ago, LadyBartonella said:

 

Thank you,

I will wait till they will answer.

 

Did you get better after going back on 250 mg? How long did you wait to get some stabilisation?

How did you make this powder?

Did you have Extended-release trazodone at the beginning?

 

04.09.2019

 

7:00 I woke up like always with anhedonia. I work like machine. Telling myself I must go to work, then counting time to go back home, then watch netflix waiting to go to sleep. Then again all the same. I don't remember what it is like to feel normal emotion, to relax , to plan something.

 

I was planning pregnacy 3 yrs ago, I am 34, I don't have much time 😞

 

9:00 fluoxetine 20 mg, clonopin 0,0006 mg

 

Anxiety triggered : someone who asked me for advise at the beginning of her WD. I couldn't help her, bcs I was going into anxiety wave.

 

11:00

 

brain fog 7/10

anxiety 4-5/10

depression 4-5/10

hand skin burning 3/10

palpitations 4/10

light sensitivity 4/10

 

 

 i did got stable immediately once i went back to 250mg after the 3 weeks of tapering, i was not well once i started that taper back in 2017,  you can ask brassmonkey for help he is very good at helping people, i have not done any taper as yet in 2019 cause i am still ironing out somethings,  i dont want to get any withdrawals. i dont know much on this board.  get in contact with  brassmonkey hes really good at this an expert if you ask me. good luck wishing you a good journey.

[anna7887]

Hi there. I’m a fellow Lyme sufferer and antidepressant user! I’ve successfully gotten off trazadone and benzos years ago. Trazadone I practically went cold turkey which didn’t hit me for 6 weeks and got very ill..: benzos I followed the 10% rule but was still a challenge. Now I’m tackling Zoloft after using it for 10 years. I’ve had Lyme for 4 & used to do the whole antibiotic thing. Die off form the antibiotics was so intense I thought I was having a nervous breakdown. Maybe you need to give the antibiotics a break while you taper and focus more on supporting the immune system? Ilmds love to go hard and I don’t think this approach works for everyone. You WILL get through this. Sending you love!

[street129]

@anna7887

Did you recovered from stopping trazadone cold turkey, I'm trying to begin my taper from trazadone, but I'm ironing out some issues with my powder and empty capsule.  I'm not getting the full dose. I will be talking to my helper.

[anna7887]

I went cold turkey for 5 days total then had to reinstate and try to taper... it was rocky for a bit but I fully recovered.. just go slow. Reread your on buhner.. maybe take a break while you stabilize. The die off mixed in with tapering is hard to know which is which. 

[LadyBartonella]

16 hours ago, anna7887 said:

Hi there. I’m a fellow Lyme sufferer and antidepressant user! I’ve successfully gotten off trazadone and benzos years ago. Trazadone I practically went cold turkey which didn’t hit me for 6 weeks and got very ill..: benzos I followed the 10% rule but was still a challenge. Now I’m tackling Zoloft after using it for 10 years. I’ve had Lyme for 4 & used to do the whole antibiotic thing. Die off form the antibiotics was so intense I thought I was having a nervous breakdown. Maybe you need to give the antibiotics a break while you taper and focus more on supporting the immune system? Ilmds love to go hard and I don’t think this approach works for everyone. You WILL get through this. Sending you love!

 

 

Thank you for your message. I did break with abx, but I am getting worse, so I extremely confused what is going on Lyme or WD. 

I was able to taper benzo, when I started Lyme treatment. How do you recognisewhat is \WD and what Lyme &co?

 

 

17 hours ago, street129 said:

i did got stable immediately

 

I got better but not stable, ah its so long way. 

 

19 hours ago, Altostrata said:

Trazodone immediate-release has a half-life of about 7 hours. The extended-release form has a half-life of 10 hours. That is not a big difference.

 

If you cut an extended-release tablet, a piece probably will act like immediate-release trazodone. Lots of people take immediate-release trazodone. You may or may not feel the difference.

Thank you Altostrata

 

 

05.09.2019

 

Woke up 11.00

Took fluo and clonopin 

 

I took day off in work just to take rest, but I feel worse.

Anxiety 6 10

depression 7  10

light sensitivity, brain fog, burning skin 6 ~?> 10

 

I don,t know if this matter but my period has started 

 

I hate this never ending story. 

[LadyBartonella]

Woke up at 7:00

 

4/10 burning skin- neck, hands,

6/10 anxiety

5/10 palpitations

6/10 depression

5/10 fatigue

 

14:00

8/10 brain fog

4/10 anxiety

5/10 depression

 

I feel like person with strong dementia (I am 34yr) and I have strong short memory problem.

 

 

 

[anna7887]

I feel for you! I’m 32 and I’ve been battling Lyme and drug withdrawal for so long & somehow managed to hold down a full time job in executive leadership. My biggest piece of advice with Lyme and taper is go slow. In my opinion, and I’m no doctor, Strengthening your immune system is more important than “killing” lyme. For the first few years of Lyme treatment I came from a place of fear and my llmd didn’t help ... took the strongest herbs, abx, etc... I was literally non functioning and on bed rest. I was in fight or flight 24/7... I knew it wasn’t healthy. I’ve since stopped aggressive herbals focused on diet (unprocessed Foods), rest, yoga , meditation , etc and have been improving by leaps and bounds. Feel free to PM if you need more support. You will stabilize and get through this!

[LadyBartonella]

On 9/6/2019 at 5:28 PM, anna7887 said:

I feel for you! I’m 32 and I’ve been battling Lyme and drug withdrawal for so long & somehow managed to hold down a full time job in executive leadership. My biggest piece of advice with Lyme and taper is go slow. In my opinion, and I’m no doctor, Strengthening your immune system is more important than “killing” lyme. For the first few years of Lyme treatment I came from a place of fear and my llmd didn’t help ... took the strongest herbs, abx, etc... I was literally non functioning and on bed rest. I was in fight or flight 24/7... I knew it wasn’t healthy. I’ve since stopped aggressive herbals focused on diet (unprocessed Foods), rest, yoga , meditation , etc and have been improving by leaps and bounds. Feel free to PM if you need more support. You will stabilize and get through this!

 

Thank you for your answer.

How do you help your immune system?

Problem is that I feel much worse when I don't treat Lyme (itimnate infection, anxiety, stomach, ect, but also bad when I treat (depression, fatigue, ect)

Maybe it was to much *benzo tapering & abx, herbs treatment. Now I stop tapering and hoping to stabilise , but I can see some symptoms returned when I stopped to take abx. This is big challenge to guess what would be best for me. 

 

08.09.2019

 

During day symptoms (diferent intensity)

 

I woke up with tension & anxiety feeling

I felt cold and had chills.

Stomach (żołądek) & diarrhea (biegunka)

depression from 5/10 to 7/10

Neck, wrists (nadgarstki), lumbar (lędźwiowy) spine,

Intimate infection

flatulence- (wzdecia), constipation (zaparcia)

burning hands and neck from time to time

 

Today I didn't take buhner. I suspect it was herxheimer reaction or it was WD.

 

A Jarisch–Herxheimer reaction is a reaction to endotoxin-like products released by the death of harmful microorganisms within the body during treatment

I took activeted charcoal for detox. 

 

09.09.2019

 

08:00

 

stomach, neck pain

flatulence- (wzdecia), constipation (zaparcia)

I feel like poisoned, 

depression 7/10

anxiety 5/10

light sensivity

wrists, eyes, throat (gardło) , fingers joints, pain,

 

[LadyBartonella]

Weather changed: significant cooling and strong wind.  I got worse.

 

10:30

 

Fatigue 7/10

Brain fog 7/10

neck , writs, hand fingers,  ankles pain 7/10

depression 6,5/10

palpitations 6/10

 

 

I didn't write much because I felt relatively stable. Doesnt mean i was healthy. Every day I am tired, depressed, I have palpitations, but the strokes were not strong. At the same time there are no windows. It is stable but I miss release of symptoms. 

 

 

[LadyBartonella]

18-19.09.2019

 

I feel much worse last 2 days

I increased Lyme herbs and probably its dying off bacteria (Herxaimer reaction)

I took NAC 600 mg (its ok for people with Lyme, withdrawal and floxed-), but I don't see any big difference.

 

Brain fog 8/10

Memory 7/10

palpitation 7/10

depression 7/10

anxiety 6/10

 

I need to know what is root case of my ilness. I can't fight 3 mystery illness at once (WD, Lyme, FQ) 

 

 

[LadyBartonella]

OK, here we are.

One week off benzo

 

I feel awful, but maybe its psychological dependency, because dose was really tiny.

From 2 days I wake up with small intrusive thoughts (mostly about traumatic WD after stoping paroxetine and benzo- like something is telling me, look ouf you will get hit, its short time to reinstall, so maybe you should do it)

 

I feel stunned, foggy , depressed, anxious, tired.

I would like someone lead me through this hard time.

 

Now I will just do nothing and wait to stabilise. I hope I can do it.

 

[LadyBartonella]

On 9/2/2019 at 2:16 AM, Shep said:

 

This is an excellent plan, LadyB. Once you stabilize, you can go ahead and get off that tiny bit of clonazepam. 

 

And then make a 10% reduction in the Trazadone, but only do this once you're stable. 

 

I would be grateful for your comment if going off clonazepam was the right step,

thank you

[Shep]

3 hours ago, LadyBartonella said:

Now I will just do nothing and wait to stabilise. I hope I can do it.

 

You can do it. It can be a bit of a bumpy ride right after coming off, but you tapered down to an extremely low dose. Now it's just a matter of doing a lot of self care. 

[LadyBartonella]

On 10/3/2019 at 1:42 PM, Shep said:

You can do it. It can be a bit of a bumpy ride right after coming off, but you tapered down to an extremely low dose. Now it's just a matter of doing a lot of self care. 

 

So I keep 0 and hope to get better.

Thank you,

[LadyBartonella]

Dr found out I have very low dao and he suspect  MCAS ( he thinks Lyme triggered this)

I felt incredible relief after a dose of famotidine (pepcid). I do not know what to do, they want me to take medications for h1 and h2, additionally they are considering stabilizer of mast cells, and after medical trauma I am terribly afraid of new drugs

Pepcid have helped, with sleeping, brain fog, depression (improved 60%). But I took only 20 mg once a day, when they told me to take twice a day and increase 40 mg x 2. It is my day 4th on 20 mg and although I had significant relief in some symptoms, also I started to get some burning brain feeling 1-2 a day with anxiety. Dr say that this is bcs I should increase H2, but I prefer to consult with SA people before I will introduce new drug to my system,

I will be grateful for an advice.

[Shep]

If possible, you may want to work with your diet as opposed to adding in another drug such as Pepcid. We're not a site for MCAS, so you may want to research to see if there are some forums dedicated to this and inquire about alternatives to using drugs. 

 

Here are a list of side effects for Pepcid and you may want to research it within the forum using the search box. 

 

Rxlist.com - Pepcid side effects

 

You'll need to taper off it if you use it long term and then decide to come off. Tapering it will prevent rebound symptoms that are common when coming off these types of stomach drugs. 

[LadyBartonella]

On 2/19/2020 at 3:24 PM, Shep said:

If possible, you may want to work with your diet as opposed to adding in another drug such as Pepcid. We're not a site for MCAS, so you may want to research to see if there are some forums dedicated to this and inquire about alternatives to using drugs. 

 

Here are a list of side effects for Pepcid and you may want to research it within the forum using the search box. 

 

Rxlist.com - Pepcid side effects

 

You'll need to taper off it if you use it long term and then decide to come off. Tapering it will prevent rebound symptoms that are common when coming off these types of stomach drugs. 

 

I met doctor and he said that my fluoxetine make me sick, because she is on triggers MCAS list. Maybe that is why when I was tapering I had improvement, but at the same time SSRI was working on h1 (histamine receptor) so when I was off 2 months my best feeling ever changed in HELL.

Anyway I can't tapper it quickly, I am too scared. If he is wrong, I will suffer 😞

 

 

 

[Pianca]

@LadyBartonella Hey there LadyB, how are you doing?