posted
Hi, I didn't write here for a long time. Unfortunately I am still not better. I have Lyme and CIDP(all my body is numb) too. I'am writing now because I need some help.
I started to do IVIG treatment for CIDP and I finished my first treatment 6days ago. 2days after finishing I had some sudden hearing loss. My ears(inside) went very numb and became clogged(my left ear is much worse than my right ear). My family doc thought I have swimmer's ear so I started to do some abx drops. It didn't help:( Now I am worried about my ears and hearing loss. I don't know what's happening with me. I don't know if it is Lyme or CIDP...
-------------------- having LD since 2005 Posts: 45 | From Los Angeles | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see that CIDP is Chronic inflammatory polyneuropathy (which can be caused by lyme, other infections, or nutritional deficiencies).
I've heard of IVIG helping several lyme patients.
I'm not sure how IVIG could affect ears (I'm just not all that educated about it) but it may not have sufficiently supported your immune system to have "tamed" lyme --and if lyme is flaring, that can cause hearing loss. But so can other things, even some Rx.
Be sure no Rx you are taking is ototoxic (meaning toxic to the ears), or if so and necessary, that you have the very best liver & kidney support for reasons explained below.
Check what the antibiotic ear drops were. Some are ototoxic.
If you are taking Azithromycin (Zithromax), I would suggest considering stopping that as it's been know to cause hearing loss, even at low dose
Aspirin - and even Acetaminophen - can cause hearing loss, too. Details here: ----------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS & SCD - Superior canal dehiscence
=======================================
Since I assume your doctor has sort of stopped you from further investigating this (with his swimmer's ear diagnosis), I suggest getting yourself to a
neurotologist ASAP. (neuro-otologist)
We should never let any degree of hearing loss occur without seeing the very best ear specialist available.
Best if they are lyme literate but if you have no other choice even one who is not can help you as the state of your ears are assessed. And, not everything is lyme so an ear specialist should still help.
Just be very careful if he/she suggests steroids (as ear doctors seem to like).
Normally, steroids can be terrible for lyme patients and cause lyme to get much worse and harder to treat.
However, to save a life, lungs, eyes or EARS, along with certain antibiotics, they may be needed. It is very important, then, to work with an ILADS-educated LLMD BEFORE any steroids would be started. Hopefully, they can be avoided.
I would think that the IVIG treatment should be working for the immune system. And its "work" likely goes on even after the IV session.
Good luck. Take care of those ears. I hope this turns around nicely for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
What is IVIG treatment?
I have had problems with my ears and hearing/balance with Lyme. I had a setback yesterday with clogged ears, loud tinnitus and additional hearing loss. This is all after months of improvement in all of my auditory symptoms.
I believe in my case, these changes were the result of me having recently stopped taking Valtrex and Lysine, which are both used to treat herpes. The theory is that when you have Lyme Disease, it reactivates old viruses, such as Herpes, which can attack your auditory/vestibular system if that is a weak point in your body.
One of the doctors I had recently seen had recommended I not take them any longer. I had stopped less than a week ago, thinking it would be okay to follow the MD's advice, since he is highly respected. However, after this experience, I am going to start right back on them.
If you see a LLMD (or a progressive ENT/neurotologist), ask about Valtrex (a prescription drug) and Lysine (nutritional supplement) for herpes. They have helped many with or without Lyme D.
Posts: 2387 | From New England | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- dbpei,
It's a big word and the spelling always trips me up. Just Google: IVIG
Excellent point about viruses, treatment and Lysine.
----------------
This author says lysine certainly appears to help immune function:
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTIONS
Indian J Med Res 124, August 2006, pp 129-148
- by Anura V. Kurpad
Fifteen pages of text.
Excerpt from abstract on page one:
. . . In general, the amount of extra protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
When my daughter had Lyme but we didn't know it, she had sudden hearing loss in one ear. It was helped by an antiviral medication--acyclavir. Sp the idea of Lyme activating a virus seems to make sense.
Posts: 991 | From California | Registered: Feb 2006
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
This is definitly bartonella.I have had the same problem.Bart causes hearing loss and the numbneess. I went back to Levaquin this time after 2 years of the first treatment ( almost 1 1 /2 year for bartonella) and when it came back I reacted right away to levaquin. Now the numbness stoped after 2 weeks in Levaquin.
I have used everything for bartonella.I would recomend to add Cryptolepsis as well.Before I did HH , mino Rifampin , azithromycin ( stoped levaquin as I could not tolerate as I was numb totally) loaded in bart and got tendonitis right away.
Now that bart is low after i reduced babesia it is easier.
Posts: 1379 | From disable | Registered: Aug 2011
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posted
I also have experienced some hearing loss and ear popping,(like altitude) in my ears. It feels like fluid and head pressure, and is somewhat relieved with Mucinex. Went to an ENT, and we're doing a hearing test, but he doesn't think it's fluid.
Thanks for all the information. How do you know if it's a viral trigger or bartonella, or otitis media, or caused by zithromax?
Posts: 964 | From san diego | Registered: Oct 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I guess the only way to find out would be to see what helps you. If the meds for bartonella make a difference, then you can probably assume it is bartonella. If valtrex (valacyclovir) and lysine help, it is probably caused by the herpes virus.
Lysine can be bought over the counter and my LLMD wanted me to take 1000 mg 2 x day when she recommended it. I take the same dosage of Valtrex.
I am now seeing someone new (LL NP) and I will get her thoughts on the connection between hearing loss and bartonella. In just 2 day, I feel a little improvement, after starting up the lysine and valtrex again. I hope I can undo the damage I did by stopping.
Posts: 2387 | From New England | Registered: Aug 2011
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