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

Neurological Lyme. I really feel like I’m dying. Severe nerve pain, thumbs and index finger painful and not fully working, muscles sore right and spasms, twitches. Sore tongue and throat. Not sure I’ll make it through the day. Trying to detox and take alka seltzer gold, nothing is helping.

LLMD hasn’t returned messages. Lost and scared right now.

HumanConclusion -
Long-time member here who has been MIA for a long time.
Just wanted to encourage you to keep posting concerns and questions, especially when things are really bad.
Feels like yesterday that I felt similar pains and symptoms and hopeless and "lost and scared". When my brain remembered, I would post and it was invaluable and this forum played a huge role in my recovery.

FYI, I had a lot of success reducing neuropathy with Low Dose Naltrexone - there is a lot of good info on LDN on this site. It hasn't worked for everyone but might be worth looking into.

-p

Pirouette!!!!

How are you? Hope you’re still doing well?

HumanConclusion said...
I started on Rifampin plus doxycycline 6 weeks ago along with A-Bart and Buhner’s herbs.

Isn't that A LOT to take at once? I'm only on Buhner herbs and I herxed like hell on those the first 3 months. I couldn't imagine adding in antibiotics, though I know it's supposed to all work together.

Are you detoxing every single day?

orbitingaround..Yes it is a lot! But I'm just following advice.Initially LLMD suggested cutting back and so I have. 6 drops of A-Bart down from 12 and halved the abx. No improvements. Additionally, my hand symtoms all began to beome prominent in mid-late October before I changed anything.

canfossi...it's been two weeks now. I don't know. I detox everyday. I feel miserable every day. Some days are worse than others though. Haven't noticed a pattern.

Pain and anxiety prevent sleeping. It's been 2 months since I got 8 hours. That can't help. Even typing this with the problems in my thumbs and fingers is a struggle.

I agree Girlie! They are terrifying but consistent with what others have reported. She just seems baffled that supplements and cutting back haven't resolved everything. Everything began in July 21 days after very bad tick exposure on June 30th. Initial response to Doxy was really good but I think too weak for my neurological symptoms out of the gate. By August 4th symptoms just surged back and have evolved but have never left. Twitching has been my main symptom for 5 months now. Bodywide has actually slightly decreased but localized in my hands has started up. As i say, I'm at a loss as to how to respond and feel like quitting. But I can't and won't.

“ Periods of severe pain all over. New symptoms like tongue soreness are appearing and now have difficulty using thumbs/fingers (with twitching) with additional arm pain. “

You have my sympathy - my worst symptom is - always has been the pain.
The twitching scared me initially (thinking the worst) - but once I learned it was lyme and coinfections, I calmed down. The twitching was just an annoyance..

HumanConclusion said...

My LLMD was initially helpful. I started on Rifampin plus doxycycline 6 weeks ago along with A-Bart and Buhner’s herbs. I’m taking a ton of supplements including the absolute maximum dosage of magnesium theronate. I’m just not improving. Periods of severe pain all over. New symptoms like tongue soreness are appearing and now have difficulty using thumbs/fingers (with twitching) with additional arm pain. My migrating pain and joint pain responsed pretty quickly to just doxy and is resolved. But what is left and emerging is horrific and disabling. I get the sense my LLMD is kinda intimidated by these symptoms and the fact I’m not responding as hoped.

Holy crap!! No wonder you’re having a herx from hell. Abx + A-Bart + Buhner herbs all at once is OVERKILL. I would drop all antimicrobial herbs for the time being. Take supportive herbs like milk thistle, hawthorn, ashwaganda (if you do well with it). Herbs that can reduce hexing - Chinese skullcap, maybe kudzu root, maybe red root.

Doctors hurt people.

So it sounds like you jumped on it right out of the gate pretty aggressively. That can be a good thing. You were treating within a few weeks of exposure and have kept it up a solid 4-5 months. Thats a crucial turning point for many people with this disease.

I initially treated for about 4 months, but I didnt see improvement so I just stopped. in retropsect that was a huge mistake. So I would say to you the same thing I would tell myself 4 years ago.

Keep pushing. You've made a lot of progress whether you can feel it or not. It takes a while sometimes. You really just have to tough it out. This may be your lowpoint. Your going to have bad symptoms and extreme lows in treatment but its part of the process. You just have to ride it out.

But also dont be afraid to adapt and change. 3-4 months is usually the longest any one protocol or strategy should be tried without changing something up. Sometimes its just as simple as the right herb or antibiotic. Sometimes a weaker herb or antibiotic can have a better effect for certain people than a stronger herb or antibiotic. Theres usually a good bit of trial and error involved.

But also dont rely too much on your LLMD.

You mentioned Buhner herbs, but thats kind of a generic term. Do you actually have his book? If not, You should get Stephen Buhner's book Healing Lyme 2nd edition.

That way you can gain a better understanding of this disease and what its trying to accomplish in your body and how to stop it from doing those things.

You can add many herbs and supplements to what you are taking. For every lyme symptom, including severe neurological lyme, buhner has a specific protocol. I would get that book and learn it. But not only learn the specific doses and protocols, but learn the physiology and biology of these diseases thoroughly. Thats the real gift Buhner has given all of us. The gift of knowledge. Not just a dosage chart or a list of herbs, but scientific understanding of these diseases coupled with ancient natural herbal wisdom. Thats how you understand it, and beat it.

Keep up the fight. Remain stubborn but adaptable, if that makes sense, and understand your doctors treatment strategy as thoroughly as you can.

I would second the words of Astroman from a post above. " You will make it. Others did before you" Its true. I and many others got so low, we never realized where the bottom would be. We found new bottoms we never thought we could reach.We didnt feel we would make it through, but many of us have, and we know the suffering, but this too shall pass. I felt the same way that all my damage was permanent, but it ebbs and flows and you can get incredibly better once you get your body's healing momentum going. You just have to carry this burden for now, but trust me you will be better and tougher for it, if you tough it out.

I respectfully disagree with logmoss’ advice to just keep pushing and tough it out. I think he may have misread something. You said you started treatment 4-5 weeks ago, not months ago.

People have different opinions on herxing. It is detrimental to your body and can be dangerous. Short term herxing followed by improvement is typically seen as a positive thing. However, relentless herxing is NOT. It’s a sign your body is overloaded with toxins and needs help. Some have much more difficulty processing toxins than others for a lot of different reasons.

It's not ALS. It's all Lyme. Sorry to be blunt, but I don't know why everyone with Lyme seems to have months where they are in complete denial (I have been there too), and starts thinking they have every *other* disease under the sun.

IT'S ALL LYME. And Bart, Babesia, and the other co-infections. I have over 30 bizarre symptoms, all from Lyme and Bart. You don't have ALS, and you are not suddenly developing Parkinson's. My Lyme at times has caused: tremors, spasms, numbness in limbs, numb tongue and throat, tingling, burning/stabbing nerve pain, constant spine cracking, severe depression, trigeminal neuralgia, random sensations of ice and ice water inside my head, pressure headaches, pressure behind my eyes, sinus pain, brain fog, trouble with words, slurring words, heat intolerance, anxiety, air hunger, excessive yawning, chest pain, foot pain, rib pressure, walking like a drunk spider, balance issues, stinging/burning eyes, vibrating leg, searing hot fire in my shoulders -- and on and on.

It sounds like you are herxing. My first 2 months on herbs brought out tons of new symptoms that I had never had before.

I would either do antibiotics OR herbs, cut your dosage down until you feel better, and detox multiple ways every single day. I take an epsom salt/peroxide bath almost every day. Activated charcoal works best for me too. Alka Seltzer Gold doesn't seem to do much for me personally. Get some Burbur Pinella detox, it worked miracles the first month I used it. Benadryl helps me a lot too. Have you changed your diet?

Keep a daily diary of your symptoms and what you are taking and eating, it will help you.

Maybe ask your LLMD about prescribing low-dose Naltrexone.

And this morning I have pain in the top of both my feet in the same spot!!! And the feet are twitching, which is new. Right knee is now sore. Getting harder to even hold the phone to type this.
I’m not sure how much I have left in the tank. I’ve lost 35 pounds over 5 months, and am close to losing my job. Trying to work from home but typing is a major challenge. Trying to find a New LLMD, one who will be more responsive and at least consider the possibility that
Lyme and company triggered something else.

Orbiting...I hear you. And I appreciate it. Odds are you are correct It’s just hard to think it’s not something else given the trajectory of symptoms. If I had some improvement in those symptoms but always worsening.

Duza...possibly. Major insomnia started right around when I began Rifampin. Of course that was also the same time a nurse friend of mine suggested an ALS diagnosis which triggered frequent panic attacks. (Of course given my symptom history, bodywide twitching at onset, no weakness at onset, migrating joint pain at onset, he called a physician who suggested “atypical” ALS.)
So hard to know which is which.
I will say that I tried CBD oil for the first time 2 nights ago and slept 6 hours straight...which is a miracle these days.

Guys I’m fighting to get to the wedding. My fiancé has been a literal saint in nursing me around the clock for the past six weeks. I love her more than anything else in the world. God has been good to me despite everything.
Thank you all for your support. I need it.

Yes Girlie 100%. That’s why I’m trying to hit this thing hard now. I’m just very afraid.