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Pharyngeal Spasm Anyone?

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Posted 10/17/2019 10:36 AM (GMT -5)
Hi all,

I'm starting a game called "What's going to break on my body today?"

So back in June I developed a globus hystericus pain in my throat and a mild choking sensation that becomes less prominent on two abx and comes back when I go off them.

I've seen an ENT. My CT was normal...surprise, but when stuck a camera down my throat he said there was inflammation. I also tested negative for all allergies in our area.

So it's obviously a nerve problem. I have neck pain and an occasional electric shock in the back on the left side of my neck. But the throat pain is more right side dominant. When I saw a neuro in Aug. his answer was ENT.

My issues are initial dx. IgM W. Blot post for Lyme in 2014 treated for 6 mos. w/abx. Suspected of having issues with Bart. Was good for about five years. Realized throat issue was a reoccurrence of Lyme issues and started seeking treatment end of July.

Thoughts and suggestions welcomed.

Post Edited (ElizKA26) : 10/18/2019 4:35:34 PM (GMT-6)

Posted 10/17/2019 11:21 PM (GMT -5)
I had issues with my throat early on. I wouid sometimes choke on my food.
I had a barium swallow test/X-ray and nothing showed up.
Referred to an ENT Dr who put a flexible tube with a camera up my nose and down my esophagus to check if I had irritation. He also had me chew a wafer and swallow it while he filmed it.
He said it was all good -

It did get better over time - can’t remember if treatment helped or just improved on its own.

It was definitely part of my lyme/bart package.
Posted 10/18/2019 12:43 AM (GMT -5)
Girlie...you strike again! Thanks friend!

It's scaring me bc it's not exactly getting better on abx but my protocols keep getting interrupted.

I see my neuro in a month. I also have Sjogren's but according to my LLMD this is another face of Bart.

Have a good night!
Posted 10/18/2019 1:12 AM (GMT -5)

ElizKA26 said...
Girlie...you strike again! Thanks friend!!

I’m not sure that’s a good thing!!!


When I read globus hystericus - it reminded me that’s what the ENT wrote on the evaluation - when I read it I thought he was saying it was all in my head... smile

So you’ve had it since June - so about 4 months?
Mine must have lasted at least that long.
I put up with it for at least a month before talking to my regular dr (didn’t have a lyme doc - wasn’t diagnosed yet) and then she sent me to get the barium swallow X-ray - which took another few weeks.
Then she referred me to ENT and it was at least a month before I got in to see him.
Then a couple more months for it to resolve.
Interestingly it improved prior to treatment.
It could take awhile longer for it to improve - hang in there!!!

I think it was after that when I went through a period of time when I was waking up a few times a night in a panic - gasping for air, and sweating.

That led to the sleep study - and was diagnosed with sleep apnea..

What a dark period of time - PTSD anyone?

I was tested for the antibodies that show if you have sjogrens - because I had dry eyes and mouth for a while too...


Hang in there !
Posted 10/18/2019 9:11 AM (GMT -5)
Girlie, yes four months. The Ear, Nose, Throat specialist said it could be linked to GERD. But I have neck pain. I have had a few episodes of Sleep Apnea...scary stuff right? Led to sleep study w/initial dx five years ago.

It's probably due to a faulty nerve process courtesy of " our gift that keeps giving!"

The ENT specialist prescribed Nexium...and I don't know what's worse. The disease or the drug. I've opted for Tagamet every other day.

What scares me is the what if it's not part of Lyme and leads to a more serious disease process, as it doesn't appear to be improving. No doubt, the stress of the situation is making it worse.

JovaLyme...yep! Refer to case in point...above statement. Protocol I'm on: Daily Bactrim two X's daily. Then Biweekly: 2 muscular injections of Bicillin.

I take Banderol and Mora herbs. NAC tablets to promote glutathione synthesis. Vitamin D. Lemon Balm...etc...etc.

@JovaLyme: how are you doing/managing? What are you taking? You're so right about doctors/specialists that know nothing about Lyme. The first ENT specialist, basically said he couldn't help me after I shared my history.

Cheers all!

Post Edited (ElizKA26) : 10/18/2019 8:46:43 AM (GMT-6)

Posted 10/18/2019 11:16 AM (GMT -5)
No good friend, no good. I've been treating w/abx since August. But with herbs since May. So yeah, you feel absolutely unwell bc you've only taken 3 weeks of one abx when you should be on two!

That probably just woke "the beast up" a bit only to add more misery. You do feel worse before you feel better, so the fact you're not well is no surprise.

I'm so sorry you're having to self treat. What I'm thinking may be the ticket for you is try and Skype with a provider as to direct you on how to proceed once you get Disulfiram.

You do realize this is a super harsh medication? I'm sure you're aware and have done your research. This will require strict adherence to a diet or no alcohol or foods even cooked in alcohol and that means no topical alcohol either. I've also heard of other foods that can cross react.

Healing vibes!
Posted 10/18/2019 11:52 AM (GMT -5)
“Have you tried disulfiram? I'm surprised more people aren't trying it given all the success stories.”

It really is too soon to know.
Are there people who are symptom free using Disulfuram and in remission?

I’ve been on this forum for 5 years and there have been many “cures” in that time.

Sebreg is doing well so far - but not on remission yet. Fingers crossed that he gets there.

I do hope disulfiram is a way out - I’ll be jumping on the bandwagon too!
Posted 10/18/2019 12:25 PM (GMT -5)
This could definitely be mold/mycotoxins.

Something to look into for sure.
Posted 10/18/2019 12:32 PM (GMT -5)
"What is considered to be the strongest agent against bart these days?"

That would be the abx in the fluoroquinolone class of meds. Ciprofloxacin and Levaquin.

They come with 3 or is it 4 FDA black box warnings...so many of us don't/won't take them. these are the Black Box risks: (they have a name for it: "Floxing")

- "A powerful class of antibiotics will now come with stronger safety warnings about dangerous drops in blood sugar and neurological side effects that can include delirium and memory problems, the U.S. Food and Drug Administration said Tuesday."


This is added to previous black box warnings:

- Risk of tendon rupture
- Risk of Peripheral Neuropathy - that could be permanent
- Risk of CNS issues
- Risk of worsening Myasthanis Gravis
- Risk of aorta tear

The risks are bad enough that it's recommended that the fluoroquinolones are used as a last resort...
Posted 10/18/2019 1:04 PM (GMT -5)
"did try some of the herbs. Buhner, Jernigan plus a few other things like monolaurin and other things I read about. I felt "something" from a couple of the Jernigan products, but nothing significant and at the price they cost, I have decided to treat it with something a little more industrial"


No, when it's hit the neurological system you have to treat with synthetics. Two at a time sometimes intravenously and for several months.

No ifs, and or buts about it. Also along with herbs. Please try to find an LLMD, if not in the UK, at least in on the European continent.

Cheers!
Posted 10/18/2019 1:41 PM (GMT -5)
Rifabutin
Posted 10/18/2019 1:49 PM (GMT -5)

JovaLyme said...

Girlie said...
Rifabutin

Is that the most powerful safe drug?

I don't want to mess about with this and really need to hit it as hard as I can. I heard dapsone is meant to be good for bartonella.

=======================

All the drugs have some risks/side effects.

I’m kind of a chicken when it comes to the pharma and Rifabutin isn’t one I worry about.

(Prior to lyme I didn’t take any medications - most middle aged people are on something! The Tylenol wouid expire in the cupboard)

Dapsone I worried about - I believe it has a risk for SJS - and that freaked me out.

I don’t know if the dapsone really helped me. I thought it was causing the herxes at first - but when it was discontinued after I finished the Persisters protocols, I continued to herx badly on the Rifabutin.., so I think it was the one all along.
Rifabutin has caused high fever, rapid pulse - which are considered classic herxes - something I never had prior to Rifabutin
Posted 10/18/2019 2:29 PM (GMT -5)
I have had this throat sensation before - so unsettling! My partner, who does not have Lyme, has also experienced it and did have an endoscopy which found inflammation. I hear you that you have noticed it improving with antibiotics, but for us this condition has occurred and been remedied by consistent relaxation, alignment improvements, and breathing exercises. I think structural issues can exacerbate inflammation and neurological issues that Lyme and co-infections make people more sensitive to, so I'm not saying it isn't Lyme-related, just that the remedy for it might involve chiropractic care, posture changes, exercises, yoga, breathing changes, etc. Just another angle to consider. Hope you find help for it soon!
Posted 10/18/2019 2:39 PM (GMT -5)
Yes I've experienced this. I've had difficulty swallowing for months now, been on a liquid diet because of it. Have had many tests done, seen lots of specialists. They ruled out GERD but I suspect that's the cause. Though I've been taking PPI medication since forever to reduce the acidity in my stomach due to being on a liquid diet, it hasn't resolved the swallowing problem. Now I'm wondering if it's lyme related? I used to have that feeling of something stuck in my throat, it went away. Now it's just difficulty swallowing sad I hope it resolves for you soon. Not a fun feeling that's for sure!
Posted 10/18/2019 5:34 PM (GMT -5)
Sunfun & Saraeli,

Yes, it's no fun. Prior to this I was getting lots of tonsil stones. I used to get them in my 20's and they went away in my 30's now they've come back in my 40's.

One thing I've noticed is I have another tonsil stone in the area that is causing me the discomfort and I can't get to it. That may be part of the problem.

JovaLyme, yes we're forced to resort to self diagnosis & treatment due to this horrific backwards system of Westernized managed care, whether it be socialized or private enterprise, they both read from similar scripts.

And many LLMD'S charge an arm and leg, but just make sure you have a backup plan should the going get tough! Best wishes!
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