Has anyone had this and if so what was the outcome? It is brutal.
Patty ❤️
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012
Yes. I have had autonomic nervous system dysfunction at various times and to varying degrees. My initial symptoms were pretty much all autonomic related - trouble swallowing, trouble breathing, tachycardia, palpitations, temperature dysregulation and intolerance, visual disturbances, strange feeling of being off-kilter in my head, change in bladder habits, etc. I did not experience POTS or passing out or being bedridden.
I have had flareups of symptoms over the years, including during unrelated acute illnesses.
What specific symptoms do you have that are part of dysautonomia?
I have had flareups of symptoms over the years, including during unrelated acute illnesses.
What specific symptoms do you have that are part of dysautonomia?
Hi there. I have all the symptoms you had but I also have tremors, panic attacks (adrenaline surges), increased heart rate, sustained and resistant hypertension ( ex: 230/120). I am finally seeing doctors to figure all this out but it is extremely hard to get ready to leave the house.
Thank you for your reply.
Patty
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012
Thank you for your reply.
Patty
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012
I had tremors, too, but I didn’t know that was part of dysautonomia. I only had outwardly visible tremors a few times. That was scary. I had what I described as tremors on the inside, like my insides were shaking. That was part of my initial symptoms, too. I think I had it on occasion later on, after I got worse and found out it was Lyme/co/mold and started treating.
What you describe as panic attacks/adrenaline surges sounds familiar. To me it felt like a revved up feeling inside that I couldn’t quiet down. It was very uncomfortable and bothersome. Can’t relax. Hard to rest/sleep. Feels like a car engine revving up on its own while in park.
I had sustained increased heart rate around 110-125 for at least two weeks upon initial symptoms, even when lying down. Made me feel weak and fatigued.
So sorry to hear about the resistant hypertension. That sounds very concerning. I’m pretty sure Traveler had that in recent years. Maybe email her and ask about it.
All those symptoms were what I experienced at initial onset. Those were some of the scariest symptoms I had, especially since neither I nor the doctors I saw knew what was causing any of it. Those symptoms gradually went away over weeks to months, so I didn’t do anything treatment wise that addressed those.
I suspect that treating MCAS and making sure your body’s ability to detox is supported would help. I think I had a clogged up liver, even though I didn’t have elevated liver enzymes, because TUDCA greatly improved my overall symptoms more than anything I had done before that.
What you describe as panic attacks/adrenaline surges sounds familiar. To me it felt like a revved up feeling inside that I couldn’t quiet down. It was very uncomfortable and bothersome. Can’t relax. Hard to rest/sleep. Feels like a car engine revving up on its own while in park.
I had sustained increased heart rate around 110-125 for at least two weeks upon initial symptoms, even when lying down. Made me feel weak and fatigued.
So sorry to hear about the resistant hypertension. That sounds very concerning. I’m pretty sure Traveler had that in recent years. Maybe email her and ask about it.
All those symptoms were what I experienced at initial onset. Those were some of the scariest symptoms I had, especially since neither I nor the doctors I saw knew what was causing any of it. Those symptoms gradually went away over weeks to months, so I didn’t do anything treatment wise that addressed those.
I suspect that treating MCAS and making sure your body’s ability to detox is supported would help. I think I had a clogged up liver, even though I didn’t have elevated liver enzymes, because TUDCA greatly improved my overall symptoms more than anything I had done before that.
Post Edited (WalkingbyFaith) : 7/10/2026 7:51:58 PM (GMT-4)
Yeah I've had terrible dysautonomia for years. There are different aspects to it. Treating lyme and coinfections helps. Meds like midodrine and mestinon helped. Licorice root used to help. Iv fluid helps. Florineff never helped for some reason. I was stented for may thurner and nutcracker, that also helped. My heart rate and bp shoot up when my body is really struggling to get my bp back up and I feel very panicked then. Often then when I take my meds to raise my bp the hr and bp numbers come down and panic subsides. Then there's this middle ground of struggling where I just get intense stomach pain.
Florineff improved all my bp and hr numbers but made my head still feel like it wasn't getting adequate circulation. It would feel like my head was too full of fluid. They've wondered if this is because of ijv compression and/or eagles syndrome or cci.
Drinking lots of water usually had limited help because I'd just want to throw up when i drank too much. Same for salt water. Recently a mix of baking soda and cream of tartar has seemed to allow me to drink more helpful amounts of fluid.
So there are a lot of things that have helped, but nothing has fixed it yet.
Florineff improved all my bp and hr numbers but made my head still feel like it wasn't getting adequate circulation. It would feel like my head was too full of fluid. They've wondered if this is because of ijv compression and/or eagles syndrome or cci.
Drinking lots of water usually had limited help because I'd just want to throw up when i drank too much. Same for salt water. Recently a mix of baking soda and cream of tartar has seemed to allow me to drink more helpful amounts of fluid.
So there are a lot of things that have helped, but nothing has fixed it yet.
Thank you WalkingbyFaith and Bailey. I am so sorry you both suffered through all of this. Did you take anything for the anxiety? I take .25 mg of lorazepam when really needed and yes, I am very aware and careful not to abuse it. It is still not enough to rid the intense anxiety and tremors. Skullcap helps a tiny bit. Reclining brings down my heart rate but not my blood pressure. Beta blockers do not help at all. Having testing and more blood work being done to check out kidney, adrenal and heart. It seems I now have a few heart problems….ugh!
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012
I never experimented much with anti-anxiety remedies, but you mentioning skullcap jogged my memory. I assume you’re talking about Chinese skullcap. I responded very favorably to Chinese skullcap and could feel a sigh of relief when I took it. I took it with kudzu root. I could take full Buhner doses of those two herbs 3x day, while I could only tolerate tiny doses (2-10 drops) of most herbs.
I can’t say that Chinese skullcap or kudzu root eliminated symptoms, because I had so many rotating symptoms at the time, but it definitely provided some relief and made things more bearable. I think they helped psychologically, too, because they were about the only things at that time that brought any noticeable positive effects. It gave me hope when things felt scary and hopeless.
I can’t say that Chinese skullcap or kudzu root eliminated symptoms, because I had so many rotating symptoms at the time, but it definitely provided some relief and made things more bearable. I think they helped psychologically, too, because they were about the only things at that time that brought any noticeable positive effects. It gave me hope when things felt scary and hopeless.
anxiety is a very common and debilitating issue
it breaks up relationships and turns lives upside down
it comes up on the forum a lot - so you are not alone with this
it is typically driven by an underlying mechanism like brain inflammation from infections driving brain regions like the amygdala to fire excessively ( its so common in tick born disease patients that Dr J presented many talks on this "limbic system dysfunction") its the same deep brain regions that control things like breathing, fight or flight, sleep, heart rate temperature etc etc
this is why it can be so hard to simply medicate it away - as the underlying mechanism is still there
so treating the underlying infections are ultimately the way to treat it
but of course you have to get through the days while you do that - so some of the below may help
Kudzu and Skullcap are both known for reducing inflammation in the CNS which is why they may also be helpful
================
my partner had raging anxiety attacks - we think from Lyme combined with Bartonella - a few things seemed to help. (i mentioned these in another thread but WBF suggested i start a new thread with them as so many people here suffer with anxiety).
1, L-theanine 200mg 2x a day as a preventative - available as tablets or powder ( is a known supplement for calming the central nervous system)
2, Pasque flower tincture - 10 drops per hour during episodes ( as per Buhner) - seemed to help take the edge off
3, lastly - an odd one - during an attack - lying on back on the floor with knees up and legs on bed and arms out to the sides calmed the attacks rapidly 8 out of 10 times - we were told to try this by a neurologist - something to do with autonomic dysfunction / low blood supply to the brain causing a fight or flight type reaction. we were both surprised when it worked!
feel free to add your own treatments or experiences below as this may become a larger list people can find via the search
the thread is here https://www.healingwell.com/community/default.aspx?f=30&m=4244489
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
it breaks up relationships and turns lives upside down
it comes up on the forum a lot - so you are not alone with this
it is typically driven by an underlying mechanism like brain inflammation from infections driving brain regions like the amygdala to fire excessively ( its so common in tick born disease patients that Dr J presented many talks on this "limbic system dysfunction") its the same deep brain regions that control things like breathing, fight or flight, sleep, heart rate temperature etc etc
this is why it can be so hard to simply medicate it away - as the underlying mechanism is still there
so treating the underlying infections are ultimately the way to treat it
but of course you have to get through the days while you do that - so some of the below may help
Kudzu and Skullcap are both known for reducing inflammation in the CNS which is why they may also be helpful
================
my partner had raging anxiety attacks - we think from Lyme combined with Bartonella - a few things seemed to help. (i mentioned these in another thread but WBF suggested i start a new thread with them as so many people here suffer with anxiety).
1, L-theanine 200mg 2x a day as a preventative - available as tablets or powder ( is a known supplement for calming the central nervous system)
2, Pasque flower tincture - 10 drops per hour during episodes ( as per Buhner) - seemed to help take the edge off
3, lastly - an odd one - during an attack - lying on back on the floor with knees up and legs on bed and arms out to the sides calmed the attacks rapidly 8 out of 10 times - we were told to try this by a neurologist - something to do with autonomic dysfunction / low blood supply to the brain causing a fight or flight type reaction. we were both surprised when it worked!
feel free to add your own treatments or experiences below as this may become a larger list people can find via the search
the thread is here https://www.healingwell.com/community/default.aspx?f=30&m=4244489
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
Yes, Garzie, reclining brings down my anxiety and decreases heart rate within minutes that’s caused from dysautonomia.
I drink at least 64 ounces of water daily and also take the calming herb Aveena Sativa with the milky oats with mild effects.
I drink at least 64 ounces of water daily and also take the calming herb Aveena Sativa with the milky oats with mild effects.
Post Edited (summer16) : 7/14/2026 5:52:32 AM (GMT-4)
yep, ref the lying down trick
in this case, having the legs raised up above the head was a key part of what the neurologist suggested.
the position he said was ideal was lying with your back flat on the floor but with your knees up so you thighs are at 90 degrees to to your torso and your lower legs supported on bed / stool/ chair whatever - so they are horizontal from the knees
having significant portion of the body raised above the head was the key bit - rather than just lying down.
that how we did it - and i was really surprised how this completely calmed a severe anxiety attack from uncontrollable shouting / rage/ hitting head on wall etc to calm (obviously still upset but able to talk normally) in less than a minute.
i think it has to do with low blood flow to the brain triggering massive adrenaline spike as the bodies attempt to try to increase blood pressure - which sent fight or flight reaction through the roof - and an already anxious person into overdrive / rage etc
getting the legs up above the head / torso - used gravity to increased blood pressure and therefore blood flow to the brain and quickly reversed the reaction.
works for this kind of POTS driven severe acute anxiety attacks - not really a treatment for ongoing generalised anxiety which is typically driven by different mechanisms
all the best
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
in this case, having the legs raised up above the head was a key part of what the neurologist suggested.
the position he said was ideal was lying with your back flat on the floor but with your knees up so you thighs are at 90 degrees to to your torso and your lower legs supported on bed / stool/ chair whatever - so they are horizontal from the knees
having significant portion of the body raised above the head was the key bit - rather than just lying down.
that how we did it - and i was really surprised how this completely calmed a severe anxiety attack from uncontrollable shouting / rage/ hitting head on wall etc to calm (obviously still upset but able to talk normally) in less than a minute.
i think it has to do with low blood flow to the brain triggering massive adrenaline spike as the bodies attempt to try to increase blood pressure - which sent fight or flight reaction through the roof - and an already anxious person into overdrive / rage etc
getting the legs up above the head / torso - used gravity to increased blood pressure and therefore blood flow to the brain and quickly reversed the reaction.
works for this kind of POTS driven severe acute anxiety attacks - not really a treatment for ongoing generalised anxiety which is typically driven by different mechanisms
all the best
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
I will get anxiety and this empty feeling when my bp is not helped. Beta blockers made everything worse for me. Effexor is an antidepressant that also helps bp. I think savella can sometimes help too.
What about excess glutamate causing anxiety? Because if that’s also one of the causes, taking something that lowers glutamate could help.
Beta blockers made symptoms so much worse. I thought I was going crazy and walking was difficult as it made my legs wobbly and extremely heavy.
Yeah, imho, doctors see the high heart rate and immediately think or we need to force it down via beta blockers. It’s like they never stop to think maybe the heart rate is high because your body desperately needs bp to go up, so the heart is beating faster to compensate.