HealingWell
Search Close Search
☰

Honest answer pls

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/4/2021 1:44 AM (GMT 0)
So the llmd told me they dnt want to delay my treatment bt I need to get an appt set up with mental health in case my anxiety and depression get worse or I get suicidal thoughts due to neuro herx. I get it , so we are trying to go to a different phsyc doc tomarrow to do an Intake I stead of waiting for the other phsyc doc all the way on sept. 7th. The nurse terrified me sayin some ppl end up with anxiety and panic so bad they become paralyzed or catatonic and dont want toeave their house or are paralyzed with numbness and neuro effects. Also having suicidal thoughts due to neuro toxins she says and im like well wth is my phsyc doc going to doc prescribe me meds thats about it, it's not like they're on call. I'm over here terrifies I have 3 kids at home and am scared to lose then from these "neuro effects during treatment. She also says neuro should have me on seizure meds just like I was diagnosed with by my old nuero. Instead new neuro wants me to get a new EEG to "clarify" if they're seizures and if the eye doesnt catch ot then o well basically. As for my neuropathy he said he'll do nothing about it and say "oh yea Lyme causes everything now" what a dumb neuro. Have any of u actually experienced "severe phsyc symptoms" during treatment of so treatment for which ingectionsnand what meds. I'm scared. Thanks
Posted 8/4/2021 2:30 AM (GMT 0)
I’m not sure I quite understands the last question. But I’ve experienced enough psych symptoms to be sure people can experience severe symptoms. I’ve had these bouts of depression usually brought on by low blood pressure post period where the words that go through my head are “I need to throw up and die.” It was a very unpleasant experience that I can’t think how to describe except depression so sad I feel the urgent need to throw up.
Posted 8/4/2021 1:51 PM (GMT 0)
People report severe psych herxes from disulfiram. Treating Bartonella in general seems more likely to count psych issues among its herx symptoms compared with treating other infections. Mepron is known to cause depression. My LLMD told me that the peptide usually prescribed for psych symptoms had caused two of her patients to have psychotic breaks, so she no longer prescribes it. (I forget which one this is but can look it up.) I never used any of those, but have dealt with anxiety and depression in the course of this illness.

I'm not sure whether this office is looking out for itself in terms of liability, being overly dramatic, or responding reasonably to a patient that they think has a high anxiety baseline. Surely they don't require every patient to have a mental health care provider and emergency psych meds on-hand. That said, anxiety and stress are extremely deleterious to healing, so making sure a patient's mental health is being looked after is very logical - not just for tick-borne disease treatment but really for all chronic illnesses! I know zero people with chronic illnesses who do not have some degree of anxiety and/or depression, and I'm sure that better support for mental health would be helpful for us all. I hope that you like the therapist you meet with and can get a few "rescue" meds to use, just in case. There were times that might have been worthwhile for me, when things were looking really bleak. Sometimes it's comforting to have a metaphorical escape route planned, even if you never choose to use it.

Having seizures under control does seem to be a good idea, particularly for someone who drives and has kids, before "poking the bear" neurologically with antimicrobial treatment. I'm sorry if you explained this in a previous post, but is there a reason you weren't on meds for the seizures before? Are they just very mild - like you have lots of warning signs beforehand and can get to a safe place, and then they pass quickly? I see your point about re-testing you and just hoping the test happens to catch the seizure activity - seems like a less-than-ideal testing scenario.

I'm sorry you have so much to arrange. Such a hassle!
Posted 8/4/2021 4:06 PM (GMT 0)
I have been on Mepron for over 2 years. I did not have any psychological issues other than feeling moody at times or sad for no reason. Very minor and it would quickly pass.

All of the Bartonella treatments I have done (and I've done a lot) have helped improve my mental awareness and state of mind. The more I have treated the better I've gotten. I want to give you some hope and not worry. You have to remember that the cytokine cascade along with the small blood vessel damage in the brain caused by these germs is responsible for the symptoms you are feeling. Once you understand how the germ works and what is happening it is not so scary.
Posted 8/4/2021 4:39 PM (GMT 0)
Medicla Nerd - At this point, I totally understand how your are feeling. I've been there before and, right now, have never been worse. The pervasive thoughts of doom and gloom. They just seem out of my control. With me, they are gut-brain related. I do believe.

First and foremost, please work on telling yourself it's not that you want to commit suicide. There is a big difference between "not wanting to live like this anymore" and wanting to end it. That is not to dismiss your thoughts, but to provide a different perspective on how to look at it. Again, totally understand where your mind is at. You have three kids at home you so clearly love. My three kids are now in their early-mid twenties, but I still remember feeling exactly as you do, and I still feel I let them down by not being able to do things as much with them.

As far as the nurse goes, she is an idiot to say that to you. I had a psychiatrist once tell me, long before Lyme diagnosis, "If you continue to live continually believing something is wrong with you, you'll be this way for life." Understand the nurse is clueless and can't possibly understand your life. She also sounds like she talk out of her butt.

Ask a lot of questions with the new psych. That is a good move. Prepare for ignorance about Lyme with most people to some degree. Again, at this moment, I can relate to what you are feeling and dread getting up each morning when the anxiety is really kicking. I fear it but deal with it. Three kids are counting on you to. Hang in there, Medical Nerd. And hope the next person you go to will help with a way out of this by getting better.

Had I written this in the morning, my mind would not have let me be rationale.
Posted 8/4/2021 5:09 PM (GMT 0)
Just re-read your post - many mental health providers do have on-call support available, and others should be happy to come up with a plan with you for whom to call if you have issues off-hours. My therapist didn't have a plan in place formally, but I had her cell number, and if I had called her in crisis, then she would have been there for me, no question. That said, she was a therapist, not a psychiatrist, so her focus was less pharma-centric than most psychiatrists' approaches will be.

There are also hotlines and crisis centers you can call if you just need someone to talk to or walk you through some grounding exercises. I ran one of these hotlines for years, and many of our callers did this, especially at night - just calling to vent, get some support or validation, be coached through grounding exercises, and come up with a plan for the time until the caller could access their regular support system. As the one in charge, all callers with suicidal ideation came to me. RW is right that most people think about not wanting to go through a miserable time anymore, and wonder if they can handle it any longer, but it's not the same as actually wanting to die - having a plan, the means to enact the plan, and the intention to carry it out. But even actively suicidal folks tend to pull through if they have support, even just a hotline. I mention this so that you can feel reassured that you'll have someone to call at any time, whether your psych provider offers an on-call support option or not.

If I am reading your post right, you feel anxious often but are not in crisis and aren't having suicidal ideation, and you're worried because the office staff at your new LLMD's office is telling you people sometimes feel suicidal when they herx - is that right? You're not saying that you're experiencing these severe psych symptoms currently, just that the staff is warning you that you might experience them in the future, and they're insisting that you have a plan and psychiatrist just in case?
Posted 8/4/2021 7:12 PM (GMT 0)
I have def had severe psyche herxing from bartonella treatment. Things like severe anxiety attacks, auditory hallucinations, intrusive thoughts, seizure-like movements. The combination of rifampin and minocycline was by far the most intense.
Posted 8/4/2021 10:14 PM (GMT 0)
I really think you would have to be a lot worse to end up being paralyzed or catatonic.

An acquaintance of mine went into a catatonic state because of an unknown neurological issue. But it started a lot differently. I don't think they had either anxiety or suicidal thoughts.
Posted 8/6/2021 1:45 AM (GMT 0)

BrianinPA said...
I have been on Mepron for over 2 years. I did not have any psychological issues other than feeling moody at times or sad for no reason. Very minor and it would quickly pass.

All of the Bartonella treatments I have done (and I've done a lot) have helped improve my mental awareness and state of mind. The more I have treated the better I've gotten. I want to give you some hope and not worry. You have to remember that the cytokine cascade along with the small blood vessel damage in the brain caused by these germs is responsible for the symptoms you are feeling. Once you understand how the germ works and what is happening it is not so scary.

I know everyone reacts differently bt thanks It gives me some hope!
Posted 8/6/2021 1:52 AM (GMT 0)

saraeli said...
People report severe psych herxes from disulfiram. Treating Bartonella in general seems more likely to count psych issues among its herx symptoms compared with treating other infections. Mepron is known to cause depression. My LLMD told me that the peptide usually prescribed for psych symptoms had caused two of her patients to have psychotic breaks, so she no longer prescribes it. (I forget which one this is but can look it up.) I never used any of those, but have dealt with anxiety and depression in the course of this illness.

I'm not sure whether this office is looking out for itself in terms of liability, being overly dramatic, or responding reasonably to a patient that they think has a high anxiety baseline. Surely they don't require every patient to have a mental health care provider and emergency psych meds on-hand. That said, anxiety and stress are extremely deleterious to healing, so making sure a patient's mental health is being looked after is very logical - not just for tick-borne disease treatment but really for all chronic illnesses! I know zero people with chronic illnesses who do not have some degree of anxiety and/or depression, and I'm sure that better support for mental health would be helpful for us all. I hope that you like the therapist you meet with and can get a few "rescue" meds to use, just in case. There were times that might have been worthwhile for me, when things were looking really bleak. Sometimes it's comforting to have a metaphorical escape route planned, even if you never choose to use it.

Having seizures under control does seem to be a good idea, particularly for someone who drives and has kids, before "poking the bear" neurologically with antimicrobial treatment. I'm sorry if you explained this in a previous post, but is there a reason you weren't on meds for the seizures before? Are they just very mild - like you have lots of warning signs beforehand and can get to a safe place, and then they pass quickly? I see your point about re-testing you and just hoping the test happens to catch the seizure activity - seems like a less-than-ideal testing scenario.

I'm sorry you have so much to arrange. Such a hassle!

I have seizures very mild like myclonic jerking when falling asleep and waking. Usually staring spells and anxiety or stress induced. My neuro kind of threatened me after letting him in his place.for taking lyme as a joke. That whamwn he stayed oh dont u know u cant drive if u have seizures that's the law. My old neuro prescribed me Topiramate. New neuro wants new testing refused meds smh
Posted 8/6/2021 11:53 PM (GMT 0)

BrianinPA said...
I have been on Mepron for over 2 years. I did not have any psychological issues other than feeling moody at times or sad for no reason. Very minor and it would quickly pass.

All of the Bartonella treatments I have done (and I've done a lot) have helped improve my mental awareness and state of mind. The more I have treated the better I've gotten. I want to give you some hope and not worry. You have to remember that the cytokine cascade along with the small blood vessel damage in the brain caused by these germs is responsible for the symptoms you are feeling. Once you understand how the germ works and what is happening it is not so scary.

You have been very blessed. Please don’t take that for granted. This is how everyone hopes treatment will be, but for many it’s not.
Posted 8/7/2021 7:20 AM (GMT 0)
I think everyone is different. Some expierences more body herxes while others experience more Neuro stuff.

When i first started treating my mental herxes were so bad I was terrified. Paranoia, delusions, etc. I would go into more detail but I don't want to scare you anymore than you already are.

Point being is yes you can get really severe mental Neuro herxes. So have a plan if things get too bad.
Posted 8/8/2021 5:07 PM (GMT 0)

JayPoppa said...
I think everyone is different. Some expierences more body herxes while others experience more Neuro stuff.

When i first started treating my mental herxes were so bad I was terrified. Paranoia, delusions, etc. I would go into more detail but I don't want to scare you anymore than you already are.

Point being is yes you can get really severe mental Neuro herxes. So have a plan if things get too bad.

It is scary hearing ppl talk about there neuro and mental herx bt also great to know I'm not alone and also gives me a little understanding on what I can do. Were you on meds for the anxiety, paranoia and delusions and what helped it if so? What do u use for detox, sorry for all the questions
Posted 8/8/2021 5:13 PM (GMT 0)

JaSon2233 said...
I have def had severe psyche herxing from bartonella treatment. Things like severe anxiety attacks, auditory hallucinations, intrusive thoughts, seizure-like movements. The combination of rifampin and minocycline was by far the most intense.

Were u detoxing enough and were u on anxiety or anti psychotic meds to help with the neuro herx? This is exactly why the nurse wants me to set up meds and see a phsyc doc In case but I understand why now.
Posted 8/8/2021 7:15 PM (GMT 0)
Medical - I was SEVERELY depressed and a complete mess when I first started treatment, that's why my LLMD put me on 1.5mg LDN. I was hysterically crying every day, very up and down. I have dealt with severe depression my entire life, have been suicidal at times, used to cut myself, had panic attacks, constant nightmares, and had an eating disorder from high school to my 20s. Most of this was from the childhood trauma I experienced, but some of it could absolutely be from Lyme too.

So yes, I definitely experience an increase in psych symptoms when I herx, BUT -- I also experience severe flashbacks when I herx (from childhood trauma). If you have any kind of previous trauma it is going to come to the surface while treating. If you don't think you have trauma then take the ACE questionnaire. My ACE score is a 9 out of 10, and I always tried to convince myself my childhood was "normal."

https://acestoohigh.com/got-your-ace-score/

The LDN made a huge, overnight improvement in my mood. It took away decades of depression, so it might be something to consider. I have never been willing to take anti-depressants or other anxiety meds.

I still have bad days though, including today. My LLMD has offered me many options, she definitely wants me back in therapy (I can't find a new therapist thanks to Covid), and she always tells me to detox more when I'm depressed and having flashbacks.

Today I had a severe hour-long flashback where I fell down a few times. This is pretty standard for my flashbacks, and actually has nothing to do with Lyme.

You're definitely not alone in dealing with this type of stuff.

I also do things like EFT tapping, vagus nerve exercises, and TRE, to calm myself down. It's still a daily struggle and I definitely need to get back into therapy.
Posted 8/9/2021 5:08 AM (GMT 0)
I have had depression on and off over the five years of treatment. No one antibiotic caused it. To date the worst psych symptoms I have experienced though were from minocyline. For the first few weeks on that drug I was a ****ing zombie. I could stare at the wall for hours at a time...it was horrible and therefore depression followed. I just started disulfiram last week though so maybe this will be even worst than the minocyline induced zombie mode. Who knows. Im just here for the ride at this point.
✚ New Topic ✚ Reply