Feel like I’m dying...LLMD has become non-responsive

So...had severe pain all over last night. But tongue is back. Now my hands and feet are twitching. It just never ends...
Trying to stay hopeful but...

Post Edited (HumanConclusion) : 1/5/2020 8:23:29 AM (GMT-7)

Thanks Ganglion Cyster. I really appreciate it. I’m dropping the A-Bart and see if it helps. I really think I need the IV Rocephon, should have hand it before. Alas, trying to get a doctor to give it is impossible. My non-responsive LLMD is really herbs person.
Tonight’s symptoms are twitching all over with simultaneous twitching in the hands and feet. Seems like it’s getting harder to do things with my hands.
My fiancé has been a saint both in nursing me and putting up with my panic attacks. It’s so difficult with such odd symptoms and new one so appearing after all this time. I’d be lost without this board. Thanks

Awoke today with finger and thumb twitching. Terrible sore arms and, a new one, neck twitching. Having a full blown anxiety attack. I’m not sure how much longer I can do this.

I know it's really easy to go down the dark rabbit hole, especially when your symptoms are flaring or your getting new ones but please try not to go to that dark place. We've all been there and I think many of us can relate to your symptoms and fears. Btw a neurologist told me that pain is not associated with ALS so that tongue pain of yours is most probably lyme or bartonella attacking the vagus nerve. I have had tongue issues that started a year into this (I'm now at 6 years). I've had pins and needles, pain, slurring, you name it. I've also had swallowing issues. These are all very scary but as I have had more time with this I see them come and go in waves. BTW I couldn't take Byron White, it made all my neuropathy and anxiety go through the roof so glad you're stopping that -- they anxiety was the worst and my thoughts wouldn't stop racing. Hang in there and keep coming here for support and try as best you can to take a deep breath and know that this is part of the lyme fight. It took me so long to accept it and I still have days where I question it. But I really know that these infections cause all of what you're going through.
I've been twitching and buzzing for six years.

Hi, HumanConclusion. I'm so sorry to hear that you have reached this very dark and difficult place. I have been there as well a few times, and I know it can be terribly hard to hang on. There were days that I did nothing but stare at the pillow whispering to myself, "Tomorrow will be better than today." Eventually it was.

I'm glad that you are posting. I'm glad that you have us to bear witness to what you are going through.

Your nerve issues sound really dramatic. I have to agree with orbiting that you should consider cutting your antimicrobial treatment back significantly or even entirely until your system can process and alleviate some of the inflammation causing these symptoms. (More than just A-Bart.) Are you taking curcumin or anything else for inflammation? Magnesium or Epsom salt baths? Are you taking anything for nervous system health, like perhaps lion's mane, burbur-pinella, Jernigan Neuro-Antitox? How about CBD for nerve pain, or a nerve pain drug if necessary?

You should not be suffering like this. This is not a mild herx to push through. A herx of this magnitude can cause damage. I really strongly suggest you hold off on taking any of your antimicrobial treatments until some of this clears.

I had significant success with the limbic system retraining program DNRS. I have largely nervous system symptoms from the three Bs and EBV, and I had a 75% symptom reduction from a slacker-level adherence to the program after about three weeks. (Full disclosure: I also started treating MCAS and ingesting more salt [for POTS] around that time, and had an old root canal tooth removed.) The app Curable also uses principles of mind-body medicine to combat nervous system dysfunction. These all can be used alongside antimicrobial treatment.

You keep saying your fiancé is a saint, and I'm sure she's lovely. My partner is wonderful, too, and I have to work actively since I got sick not to feel just terrible about how limiting my illness has been for my partner and child. I might be projecting a little, but don't let guilt creep into the mix of stuff you're already dealing with. You are a human being with the full value of any other, and you deserve care and compassion right now. Sure, it's absolutely hard on loved ones, too, but others in your fiancé's life can support her. It's okay to focus on yourself right now. Thank her, but make peace with accepting help.

Can you take a leave from work? In which country do you live?

Some days are brutal. Sometimes weeks or months can be brutal, too. Hang in there. Sending you healing vibes!

Human, any chance you have had a virus recently or been exposed to one? I had a lot of the neuro stuff you are describing, including pain and paralysis, after a virus last fall. It lasted for months. I wonder if I perhaps I exacerbated some sort of autoimmune process by taking a bunch of immune boosters for the virus (olive leaf, elderberry, echinacea). Might be a long shot given everything else you are taking, but just thought I'd throw it out there, since viruses can do a number on the nervous system. Ditto vaccines if you have had any boosters recently or a flu shot.

What you are going through is temporary. Your fiancé knows that you are so much more than this illness.

Sometimes the demoralization and staggering disappointments of this illness take your brain to a dark place, but know that things will not always seem so bleak. This illness stresses us out hugely and then takes advantage of that depletion to take over further and cause more havoc. Don't let it play this trick on you! Be defiant. If you can't be calm, then distract yourself with sudoku. If you can't be relaxed, then hum a favorite song that reminds you of better times. If you can't be comfortable, then find just one part of your body that feels okay and put your attention there. If you can't be in your body one second longer, then draw a picture of it with all the hurting parts in bright red. Cry - tears actually contain stress hormones, so you can release some of the physical stress process. Find something that distracts you or use a coping skill for anxiety like using your senses (five things you see, four you hear, three you feel, two you smell, one you taste), count three things you see of each color, think of a person you know whose name starts with each letter of the alphabet, etc. Breathing exercises can help. Whatever it takes to stop the despair response. (This is also a great time for DNRS.)

I hope something one of us says will be helpful. I'm glad that you are posting. Please let us know how you are doing!

If you feel really close to the "something terrible" or if you just want a person to chat with, then you can call or text the Samaritans hotline anytime: (877) 870-HOPE (4673) Don't hesitate. It's what they're there for. (Apologies if you're not in the US, but maybe someone else can help with a hotline if you're elsewhere....)

Many times I have wanted a way out of this ordeal, and thinking about death makes sense as a form of escape. A lot of us have pondered this. It's natural and human to want a break from suffering! Don't be afraid to talk about it, and don't get down on yourself for these thoughts. They are not a sign of weakness or insanity. They're just a sign you're sick of something intolerable. This is a traumatic illness! If you find yourself making a plan to harm yourself, though, then please reach out.

There is more to life than this, for you. There is more life waiting for you.

My understanding is that pinella is best for nervous system detox, so I'm not sure if that relates to air hunger, honestly. I wish I could be of more help! My best tip for air hunger is to spend $25 on a pulse oximeter so you can reassure yourself that you are, in fact, getting enough oxygen, even when it doesn't feel like it. I got air hunger for the first time when treating babesia, and I know it's an unsettling symptom!

Also, if I understood right, you started treatment 6-7 weeks ago. That’s very early for Lyme treatment even though it seems like a long time. The first few months in particular can be a roller coaster ride. Anytime you start something new or increase doses, it can cause all sorts of symptoms, herxes, or reactions.

I have also found that I frequently have delayed herxes around the 3 week mark. I’ll start something new and think I am tolerating it okay and around the 3rd week, I get blindsided. By the time 3 weeks has rolled around, I’d already forgotten that anything was “new,” as in Lyme time new means like this morning, LOL!!!

I guess maybe it takes that long for my toxin tub to overflow, and that’s when it hits the fan and I holler pea-knuckles. Then I figure out what triggered the herx and back off a bit and restart slowly.

HumanConclusion,

I think most of us here, have had that exact same fear...what if this is terminal? Am I dying, because this certainly feels like it?

It is not terminal. You aren’t dying. You will be ok. Not only that, but you will be a stronger, better, more loving & compassionate person because of it.

But it is awful, absolute hell and definitely gave me a glimpse of what dying may feel like. It makes just being alive hard, something I took for granted before lyme. It instills a fear within (me at least) that is hard to shake.

Keep hanging on & fighting. It helps to take note of progress or reduction in symptoms - even the smallest ones. I am sorry you’re still going through this super rough patch. I just got out of a low point, and I believe deep down you will too. I’ve been checking your posts daily & will continue to send positive thoughts your way.

I hear you that you have cut things out already, but some of us have such sensitive systems that being on that regimen would be far too much for us. For me it would overwhelm my system, dangerously. For others, it would be tolerable. But from what you have posted, it is not tolerable for you!

While this protocol includes lots of great, helpful things, they can't be helpful all at the same time if they are stressing out your system so much. People can have a serious herx from a single herb! And you are using an antiviral drug, two pharmaceutical antibiotics, the full Buhner protocol, sida acuta, Biocidin, lysine, and serrapeptase! Any one of those could cause how you're feeling.

This point of view comes from my own experience as a very sensitive person, but I vote for scaling way back. Treatment can get gnarly, for sure, but when that happens, adjustments should be made.

Again, that is way TOO MUCH STUFF! I herxed badly on literally 5 drops of herbs.

Personally I would cut most of it. Either do one or the other, herbs or antibiotics. Obviously keep the detox regime, vitamins, and magnesium. Don't know about the lions mane though. Burbur Pinella work better together though.

You're probably better off stopping everything for a few days, detoxing a ton, and re-evaluating how you feel.