More questions about hearing-related Lyme problems: 1. Does anyone have an ENT that'a an LLMD? 2. I believe some of the ear damage that occurs from the interaction of abx and the Lyme/Babs etc. we are trying to treat is permanent. Anyone else think so? Some might be permanent anyway without abx, right? 3. Anyone have knowledge of the ear problems hyperaccusis/hearing loss/tinnitus/aural hallucinations in LD being caused by brain blood-flow problems? Saw one report but the aural/musical hallucinations came back when abx was stopped. Not encouraging! 4. If a SPECT scan was done to detect blood flow problems, what can be done then? Might Heparin or some other blood thinner help? Or might that make it worse? 5. Which meds are most damaging hearing wise? I've read Zithro, Mino, Vanco, Biaxin, and Plaquenil(pretty much everything to do with quinine/babs treatment), so how does one get better without all these drugs? If Ketek is a 3rd generation of Biaxin, wouldn't that have the same potential for damage?
I am asking all this because after my desperate battle with Flagyl followed by Biaxin I now have what seems to be permanent LOUD buzzing in what was my good ear, the one that hadn't had the tick bite and subsequent BL, the one that didn't have aural fullness, tinnitus, and hearing loss. The tinnitus and pressure preceeded the hearing loss in the bad ear so I am worried that once again the tinnitus in the "good" ear precedes more hearing loss.
6. Anyone been treated with Vitamin A for this stuff? Any other treatments? Where do you find Vinpocetine?
7. Anyone think the Flagyl may have unleashed older more entrenched Babs or Lyme and that this older stronger bug/bugs from four years ago are now attacking this weak? part of my body? My neck was so stiff two hours after a sauna that I thought I fell from a tall building on it! This happened twice. Is the Bb clumped around the spinal cord and the cranial nerves?
8. I once saw a posting by someone named Vera G who said something like, "Lyme starts in the ear and moves out from there." Sure fits in my case. Comments?
I'm taking Ceftin 4 days, then Biaxin 3 days, supposed to be taking more Tindimax too, but put a hold on that. Tried it alone for a week,it didn't seem to bother me nearly as much as the Flagyl, but didn't gain any ground.
In addition to the buzzing machine-like noise my own voice and other voices sound warble-y, like they are underwater or on a bad cellphone breaking up connection. What is this??
I'm really scared. See LLMD next week on the 18th.
Thanks ALL,
mjo
Posts: 422 | From Luck home | Registered: Sep 2005
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quote: "Lyme starts in the ear and moves out from there."
Sure fits in my case too. Tinnitus alone was my first symptom. Then I got a fever 2 days later and it was all downhill from there. I've had the tinnitus steadily since then (21 months ago), although it is MUCH quieter now.
I've had my hearing checked a little over a year ago and it was fine.
My aural hallucinations include dogs barking, people clapping, phones ringing and of course music. I only get them once in a while. The brain bloodflow problems may be the cause of this. At least it makes sense to me.
I've recently tried using an herb (Andrographitis) which is a germ-killer and is supposed to have a high concentration in the brain. My aural hallucinations came back with a big herx. This was surprising to me as I haven't had one for 7 months.
- Mike
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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Do you think in some people the Bb go right to the brain/head area hence the "Bb starts.."? Or that it has to do with the strain of the Bb? Certainly those of us with neuro stuff are more likely to have the ear problems.
Looking back I have had very sensitive ears since junior high or earlier. I could never stand any cold wind hitting my ears, sometimes even when the temp was fairly warm they would still hurt. The outer ear would hurt from the cold, but the most painful part was the inside, the ear canal. Always wondered if anyone else ever had this problem. Then met a woman a few years ago who wore ear muffs sometimes even in summer for the same ear pain!
Might I have had Bb forever? I was constantly in the woods all throughout my childhood. No doc ever explained why my ears hurt though one did say, "Your ears are very straight inside," whatever that means. Never had any ear infections.
I go to my chiropractor today and out of curiosity I ask him to look in my ears. The new bad ear has a red eardrum. Other one is ok. So why is it red? Think it's unleashed Bb like I thought? Chiro told me to gargle with salt water twice a day. Add a little lemon to it. He says it will help kill the bugs and keep the eustachian tubes open. Think I should call LLMD? What could they offer? Boost up the abx?
Posts: 422 | From Luck home | Registered: Sep 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Mjo: You said, 6. Anyone been treated with Vitamin A for this stuff? Any other treatments? Where do you find Vinpocetine?
Hey, I was reading info about Vinpocetine right before I checked into LymeNet. So here's what I found.
Vinpocetine is a vasodilator, in other words it improves brain blood flow with a unique non-steal affect, that is to say it only affects areas that need to be improved. Accordingly, by improving brain blood flow, vinpocetine has been shown to help improve hearing (particularly tinnitus), eyesight and even alleviate the problems involved with menopause.
Clinical research indicates that vinpocetine has a positive effect upon damaged areas of the brain, and raises brain energy levels. But perhaps most importantly, vinpocetine can protect against brain arteriosclerosis, which if left unchecked, could lead to strokes.
Whilst heart arterial condition is widely considered by many people today, how many consider the condition of their blood flow in their brain, where their capillaries and arteries are the thinnest? Vinpocetine is also known to be an anti-oxidant, and in this way may further protect the brain from aging.
There are no known side effects, toxicity or contraindications at doses of one tablet (5mg each), two or three times daily, (up to two tablets, three times daily for treatments). This product is pharmaceutical quality derived from the patent holder Covex in Spain.
At higher dosages, seek your physicians advice if combining with potent vasodilators such as ginkgo biloba, Hydergine, Nicergoline, Picamilone, or Xanthinol Nicotinate etc.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
mjo, You are exactly right. What is the LLMD going to do except maybe boost of abx. Well, maybe switching abx would be something to consider. Maybe try one with better BBB penetration like mino. or maybe one that has good nervous system penetration like Cedax.
Gargling may be good but you have to do it with great consistency. If your eardrum is visibly red, maybe an eardrop antibiotic would help...if there is such a thing.
As I mentioned earlier, I ordered Andrographitis from www.bioessence.com and took it with abx.
It has helped me neuro-wise...even lowered the tinnitus a little. I'm going to try it again in a week or two.
For me, as a kid, I always had tinnitus when I was sick. And it would always go away as soon as I was better. I've had maybe one ear infection my whole life...I'm not even sure about that one. I'm 41 now. I spent my childhood in the woods too so who knows.
I think you are right about the strains of Bb causing different probs. but they are more along the broad lines of neuro symptoms vs. arthritic symptoms, etc. Where in the neuro system the symptoms appear, I think, depends on the person.
Looking back, before I got sick, I had a couple days of being very cold, which is odd for me since I am always warm. A week later I was having chest pains. Neither symptom was persistent. Then a month and a half later I woke up with the tinnitus and didn't think much of it. 2 days later, I had the fever insomnia congnitive probs. (wasn't sure how to tie shoes). So I'd say that it went nearly right to my brain.
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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posted
Mike and Carol! I just love ymenet. You've both given thought and taken time to reply to my posts, more time than I usually get from my LLMD. Like most he's majorly overworked.
Both the andrographitis and the vinpocetine sound promising. Thanks for the links! You're both thinking the same way, seeing the need to get more brain change/brain penetration.
My LLMD called me back on Friday. He sounded upset. Seems he hadn't gotten my frantic Flagyl calls for help, his nurse had been giving me the advice I took: "Start back on Biaxin; Halve Biaxin; Chest pain just the Lyme.." He took me off Biaxin NOW. He made me an appointment with an ENT he knows near his office. Stay on Ceftin.
Doc's afraid like I am that I could lose more hearing. Said Flagyl works on protozoa and the profound effects suffered mean what?? (I never even made it to taking portions totalling one whole 250mg pill in 3 days, took just eighths! One pill would have killed me.) Thinks I might have to have tubes in my ears. Could the ear fluid be tested? Might I have Myco or big time Babs? What other things does Flagyl target?
Been gargling, but YUK! Tried heat to the ear. Added a diuretic. I know they're bad and deplete minerals, but couldn't stand the pressure in my ears any more. Seems to be helping.
Will let you know results of Friday's visits to doc and ENT. Thanks again!
Posts: 422 | From Luck home | Registered: Sep 2005
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