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Posted 2/18/2022 10:47 AM (GMT 0)
Hey all,

I've been treating with buhner for about 1 and half years. A year ago, I was doing pretty well. Some bart symptoms here and there, mainly dizziness and tingling, but all that got mostly solved in the spring. I started getting sloppy with my herbs and diet during summer. Shortly, some of my symptoms started popping back. Foot pain, dizziness, tingling, muscle spasms etc.

My main problem has been intermittent hearing loss attacks, that last for few hours but the hearing gets normal afterwards. It comes with horrible fullness and distortion as well. All that got majorly better, but after the relapse of other symptoms, I started getting them again, quite mild this time though. But it kept snowballing with more frequent episodes and right now I'm slowly recovering from an episode that has lasted for 13 hours already! My other symptoms are pretty well under control as I started max dosing buhner and taking 4x a day.

I have noticed an increase in MCAS-type symptoms though, have had lots of dermatographia and post nasal drip in the last few days.

I just don't get it. Why are the hearing loss episodes still getting worse when pains etc. are getting better? Quite terrified right now as I'm a young music producer that is just about to make it into a career 😔

Any input is much appreciated!
Posted 2/18/2022 11:22 AM (GMT 0)
i have 2 thoughts

1st - that the hearing issues could possibly be caused by something else - or aggravated by it - so it might be worth getting that looked at by a suitable physician or specialist to rule it out

2nd - if it is lyme et al related - then lots of odd symptoms do come and go again for many of us - like sudden pain in a limb or an organ - only for it to go again a minute an hour or a week or so later - all very random - but this pattern seems to occur for many of these odd symptoms
in the early days of this illness this would typically freak me out as - of course we never know how bad it will get or if it will get better - but over time i have come to realise - most of these things ( especially if there is nothing found in 1 above ) seem to come go - often as mysteriously as they arrived - and knowing this tend to help me worry less.

an uptick in symptoms is often noted when starting or re-starting treatment - this may be in the form of worsening of current or past symptoms - or new ones - and you mention a MACS type symptom picture - so it sounds like this could be related to this pattern of worsening of older symptoms also

hope things level out soon
Posted 2/18/2022 5:39 PM (GMT 0)
I would definitely agree with Garzie about getting your hearing checked - just in case.

I would consider something else as well though - the need for detoxing. I don't know a whole lot about living with MCAS, but I did find a site with a reasonable approach though: https://mastcellsunited.com/2018/07/01/reducing-toxic-burden-for-the-mcas-patient/

One of the things that was said a few times on the above site was talking about detoxing the liver, which would help both conditions (Lyme & MCAS). There are several popular liver detoxes, and we have one listed at the bottom of page 2 of the "New to Lyme? Start here" thread that sits at the top of the forum.
Posted 2/18/2022 7:06 PM (GMT 0)
i used to think the high pitch ring was from all the screaming guitars in my mixing monitors but it was tinnitus caused by bartonella on the inner ear nerves . when it caused extreme vertigo i took extreme action with garlic ear oil , acs silver and bee venom eye drops in the ear and even oil of oregano behind the ear ... it resolved after adequate treatment with zhangs allicin and hh2 . some hearing loss due to drummers is real but its much better now ...
Posted 2/18/2022 7:57 PM (GMT 0)
Thanks a lot for the replies guys! I have had my hearing checked many times since these symptoms started. ENTs ended up with probably the most useless dx, "Meniere's like symptoms" as they said it doesn't really match the symptoms. As docs were useless, soon I linked my hearing symptoms to my rashes, pains etc. as they begun together 2 months after a summer flu I had.

I've read that bartonella can cause fluctuating hearing loss, but now also stumbled upon MCAS as a possible trigger. I'm thinking of reducing the doses and putting the most immune hyping and histamine rich herbs for a pause and see what happens.
Posted 2/18/2022 10:18 PM (GMT 0)
Neuro Lyme is another one that can cause tinnitis.

What I did to help ease my tinnitis was to work on healing my nervous system. I would think that would help no matter what the cause.

Just a thought.
Posted 2/21/2022 4:51 PM (GMT 0)

Traveler said...
Neuro Lyme is another one that can cause tinnitis.

What I did to help ease my tinnitis was to work on healing my nervous system. I would think that would help no matter what the cause.

Just a thought.

i agree ...yep bugs on the nerves ...
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