posted
For those that have seen an ENT specialist, was it worth it and were they able to help in anyway?
My local doc said it may be worthwhile - I have crackling/popping/dripping noises in my ears, nose and throat........there is heap of strange noises going on in there. I often feel very full in the ears and when i try to pop them its like the tubes inside crackle open. It sucks.
Fortunately (touch wood) I dont have any hearing or tinnitus problems yet, it actually seems more like physical damage or inflammation!
However, I have heaps of other head symptoms, twitching, creepie crawlies, a tight feeling of the skin on my skalp and fleeting TMJ issues. It just seems like my whole head is affected or infected. All started after getting ill and I assume its just part of the dissemination.
After so much time wasting with so many other specialists before diagnosis I now cant actually imagine what an ENT specialist can actually do for me, other than to tell me I have some damage or Eustuchian tube dysfunction (ETD)!
Reading about ETD, it is often caused by a bacterial infection and the treatment is abx. I am taking abx for the lyme so in theory the ETD should improve with treatment.
To go or not to go (to see an ENT specialist), that is the question?
Cheers Steve in Shanghai
Posts: 34 | From China | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Since you are being treated.. and have nothing to lose at this point.. you MIGHT want to double check to see if they find anything in your ears they can address or help with?
Who knows.. you MIGHT get a smart one.. and they MAY be able to help? And if nothing else.. it MAY help educate THEM?
Unless of course you are just totally ducked out and can't stand the thought of seeing another duck.
If that is the case..
Cancel the appointment and eat some ice cream. MUCH less stress... much more fun.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there shang,
Yes. I suffered on and off with "swimmers ear" for about five years.
I finally went to an ENT and he dx me with a bacterial/fungal infection in my ears... He told me I had the equivalent to "athletes feet in my ears".
He prescribed an antibacterial/fungal eardrop and nasal spray(I don't remember the name of it)but it helped me a whole bunch. I have'nt had that problem now for a couple years.
They may also do a cat or mri of your nasal cavity which if you're like me will come out negative for any blockages...but good to know.
good luck zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
It didn't help me. Unless they can find some other treatable cause for the problem, or you need to have these problems documented for some reason, I don't really think it is worthwhile. It would be unusual to happen on an ENT who knows anything about lyme and the cos, so he/she will not be seeing the whole picture.
Just my opinion based on one visit to ENT.
Posts: 8430 | From Not available | Registered: Oct 2000
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I finally got a reply from Dr. S that I needed to retest H.Pylori. If +ve, keep treatment, if negative go back to doxy.
So took H.Pylori breath test, it was negative. So I went back to the doxy, and kept on the biaxin.
Felt a bit better after 2 weeks on the doxy then last week had my phone follow up with Dr. S. He wanted me to take a blood test instead for the H. Pylori and then go back to the Amoxi and Biaxin combo if +ve........guess what, it was +ve.
Though I agree with Z Lymie, I do think its a flase positive. Every other H. Pylori test known to man has been negative, but the blood tests for H.Pylori shows up with a +ve IgG.
However, now I am in a quandry again because I feel like the Doxy may have run its course and not working anymore, I am slipping again! Or maybe it is dodgy 5c Chinese Doxy tabs from China!!
What to do, change or not? tough question!
I have many symptoms/things that I think point to Babs (i started with massive night sweats, had a high lactate hydrogenase count and now someone said clicking joints is symptom of Babs) BUT Dr S so far does not think I have it or any co-infections because I tested negative!
Anyway, trying to figure out the mysteries.
Its all very mysterious!
Herxing in Shanghai! Happy herxing to all Steve
Posts: 34 | From China | Registered: Aug 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I went for vertigo. They found nothing. Some might say that was useless. I say it told me that (1) I didn't have any damage to my hearing I needed to address and (2) the vertigo is from Lyme.
My LLMD has sent me to specialists multiple times to either help control symptoms or to rule out other causes of the symptoms.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Forget the ENT go to a gastroenterologist. An ENT will probably give you no explantation for the noises, tell you that your hearing is fine and that you have no damage. I have all the same symptoms you describe. Ent was the 1st dr. I consulted years ago for dizziness as well - sent home with Antivert and something that gave me severe palpitations.
Still popping and cracking, now add floating..
The urea breath test is used to determine if you have eradicated the h pylori with treatment. You did that. The positive blood test can be positive a long time after treatment. Or I guess could be a false positive.
My blood test was positive I think it was 2yrs after treatment. My gastro gave me the breath test- negative. He said it was 98% effective He thought for sure that I had never eradicated or maybe acquired a new infection because I had the original symptoms so we did an endoscopy-all 4 samples negative.
Do you have any h pylori symptoms? The treatment is only 2wks but why do it if it is positive from previous infection? I don't know Dr. S but would think that you need a gastro to followup
In my case I waited several months before starting antibiotics as I was afraid to mess up my stomach any more. 1 week in my stomach was better, Did I have the h pylori after all?
What is lactate hydrogenase?
So if its not babs whats causing the night sweats?
What is that you say you are taking, Doxy from a Pez dispenser?
How long in Shanghai?
Yes, more & more mysteries...
Posts: 465 | From New York, NY | Registered: Aug 2005
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Marsy, to answer your questions and further discuss;
I personally dont think i have H.Pylori anymore and dont need a GI duck. My first symptoms in April were strange feeling in leg and heart palps, a month later came stomach cramping. Thats when the docs finally tested for H. Pylori. It was +ve, so gave me 7 days triple therapy (Amoxi, Biaxin + PPI). They couldnt explain other symptoms. After the 7 days I still had some stomach cramping and so many new problems so I went for an endo, found a "healing" duodenal ulcer and the biop was -ve for H.Pylori. Was given 2 months of Nexium, stomach symptoms dissapeared with the nexium.
However, at the time I had one hell of a reaction to the abx and all these new symptoms appeared out of no where.
The night sweats though dissapeared after about 2 1/2 months and I was left with all these residual bizzare symptoms, twitching, floaters, now ENT problems, TMJ problems, weaird tight creepie crawlie scalp things, IBS, nausea etc!
3 months later and I see Dr. S. He Runs the standard Lyme tests and because of Ulcer history wants retest (serology) for H. Pylori. Lyme is +ve (bands 31, 34, 41, 83/93 all +ve 39 IND) CDC Negative but I didnt even realise there was such thing as a vaccination before. CD57 = 44 and H.Pylori IgG is +ve.
At the time Dr S is unsure whether I should stay on Doxy or go back to the H.Pylori treatment. He finally decides Amoxi, Biaxin, PPI for H.Pylori! Didnt give me heaps of confidence with his unsure phone consult.
I slowly slip (or is it a Herx, not sure) day by day with the new treatment, so after 5 weeks contact him. He replies as I said above, so I have breath test. -ve, so I change back to Doxy and see some improvments again!
After phone consult he says he wants blood test confirmation of eradication of H.Pylori. If -ve ok, if +ve go back to Amoxi Biaxin.
Test is +ve. I am either herxing now like crazy or the Doxy is not helping......so I am considering to follow his advice and change, i guess I should as he is the expert?
When someone figures this disease out 100% they should be nominated for Noble Prize!
FYI - Lactate Hydroganese is something in our blood (I dont know exactly) but high counts are often seen with those who have Babs!
I finally got some vibramycin (over the counter no script) from Hong Kong, so no more of those Chinese Candy......which by the way I over priced in fact it was $2USD for 100 x 100mg!
Herxorama Shanghai Style - I will invite all to the party in a seperate post. I work here, been here almost 2 years, want to at least see out Olympics!
Posts: 34 | From China | Registered: Aug 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
An ENT helped diagnose my mold problem & get me started on antifungals & immunotherapy shots.
Very worthwhile visit.
Many w/Chronic Lyme have more going on than just Lyme. Molds, Parasites, fungi & metals.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there shang....
Going to ENT is'nt going to harm anything...just don't tell ENT you have lyme disease....
H-pylori is the bacillus that gives folks heartburn and ulcers....
You had it.... IGM test if positive tells ducks that infection is active....
IGG test if positive tells ducks that you have been exposed to that particular bacillus sometime in your life....so you will be positive IGG forever!
also lyme(Bb)is cross referrenced in blood tests with h-pylori...
I always come up positive for h-pylori even after I did the 14day abx for it 10 years ago and have not had heartburn symptoms since....go figure!
I'm somewhat surprised your llmd has'nt given you any flagyl(metronidazol or tinidazol) in treating suspected gastro problems...they helped me...and they're cystic(form of Bb) busters...alinia might also help(anti-parasite).
I had similar none reaction to doxy after I took it for six months initially....did'nt have same good effect further down my abx road.
What did I miss...?
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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When I read your post I agreed that yes you had cleared up the h. Pylori. The IGG as Tony and I stated can remain positive a long time after treatment. I do not understand Dr. S here which is why I suggested for you to see a gastroenterogist, the breath test showed that your were successfully treated. A gastro dr. would confirm this. I would ask him why he does not agree with this???
My concern is that Dr. S is spending too much time on this. It sounds like he treated you for 5 wks for h. pylori ??? Was this at the regular Prevpac dose? 2000mg amox (4x500) 1000mg biaxin (2x500) I mean at least you are still hitting the lyme right? You mentioned 1000/500mg once before if this is the case it would make sense that you would be slipping on this protocol.
I cannot understand why he would not do a trial of treatment for possible Babs. The LH, he did that test? If you do a post on suspecting Babs I'm sure that you would get alot of information.
Also from the history on this board there are many people who did not get better until treating the co-infections. THis seems to be a biggie.
Wonder why the Dr. is unsure??? You don't have H. pylori, you responded well to Doxy, maybe you are now herxing. And now he wants to switch you back to the A/B again?
Steve, maybe you need a new doctor, I don't know but do whatever you need to do to get well and be there for the olympics!!
Posts: 465 | From New York, NY | Registered: Aug 2005
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posted
I wish I had seen this thread 2 days ago. I went to an ENT for fullness in ears, dizziness, etc. He told me that all my passages were clear, no explaination for the fullness/dizziness. I guess it's just another of those Lyme things. I do have some hearing loss, but not enough to think about hearing aids. Then he mentioned the "at your age" thing. Man, I hate that!
I have had CAT scans of my ears/sinus passages before and they are always normal. Maddening as he**
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Too many "specialists" - maybe the icecream is a really good option!
I also have this weird rash, that has been coming and going with treatment (not bullseye type - at least i think). Do I also see a dermatologist? He will say its just a bit of eczema, like my ID ang Neuro ducks said! Funny thing though was that when I forst stated 400mg of doxy it dissapeared, 2nd time on the doxy and it dissapeared......but now its back with a vengeance even with the doxy!
But it seems as though it cant hurt anything to go see the ENT, except the wallet!
Thanks for all the replies! Steve
Posts: 34 | From China | Registered: Aug 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
ENT was a big waster for me.
I went to him after complaining of chronic vertigo, allergies and MCS.
He said "well did you try a nasal spray?"
I didnt yet so he put me on a steroid. I took too much of it and after a week blood was dripping out of my nose.
I went back and told him and then he said, "well you didnt try it for 6 weeks did you"
Then I asked him why I felt like I had fluid in my ears. They did some tests and they came back neg. He said I can have the sensation without the fluid.
Then I said what about the chronic vertigo. He said that some patients of his have had vertigo for 20-30 years. Then what the hell am I seing you for.
BIG BIG BIG BIG BIG BIG WASTE!!!!!
Posts: 2905 | From New England | Registered: Sep 2004
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