dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Hello, I was recently diagnosed with Lyme Disease after almost a year of searching for the cause of sudden hearing loss, followed by roaring tinnitus, vestibular (balance) damage, and all kinds of neuro symptoms that I knew did not fit with the diagnosis of Meniere's Disease I had been given. Turns out I had a positive PCR for Lyme. I am seeing a holistic LLMD. She is still concerned about metal toxicity and I will know more in a couple of weeks. MD thinks I contracted Lyme 4 - 5 years ago based on my symptoms preceding hearing loss. I have had at least 3 tick bites over the years, but never had the rash that everyone associates with Lyme. I would love to hear from any of you that have had a similar journey. I know it isn't going to be easy but so grateful to have learned there is hope.
Posts: 2386 | From New England | Registered: Aug 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Most lyme patients have a story similar to yours, only they were sick longer before getting the lyme diagnosis.
I had lyme at least 10 years before I got my diagnosis. For the last 5 years, my diagnosis/misdiagnosis was menopause. It was the menopause from hell.
No doctor tested me for lyme in the 10 years I went searching for an answer to my problems.
I got rid of lyme and its coinfections. It is now over 6 1/2 years since I completed my treatment and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
My most important piece of advice is to get the best lyme doctor you can find. This will require learning as much about the disease as you can. I suggest you start by reading the Burrascano Lyme Treatment Guidelines. They are here:
The doc is the key to getting rid of this disease. Many doctors treat lyme disease but only a few know enough to get rid of it for a person. You need to find one with enough expertise to do it for you.
You will learn a lot about how to treat lyme and its coinfections from the Guidelines. They will help you evauate the doctor's treatment of you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Welcome!! Most who go chronic never had the benefit of a rash. You can be bit and never know it.
And then the IDSA says MOST patients have a rash... NOPE!
Glad you found us! Sounds like you have a good doctor!
Check out "Quick Links to Popular Topics" here in Medical. Lots of information there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Welcome, BUT sorry you have to be here. There are so many people to help you here.
You found the right place,, Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Thank you for all of your support and advice. I watched Under Our Skin last night and was amazed. I pray I will get my hearing back and lose this dreadful tinnitus - but even if I don't, it will be great to have my old brain and healthy body back. The doctor thinks the neuro symptoms and arthritis will get better with treatment over time, but wasn't sure about the hearing and balance. She did not recommend any change in my diet or exercise - and I noticed that the link (DR.BURRASCANO) you sent has explicit requirements for both including lots of supplements. Did you all follow this regimen exactly - or did you modify as able?
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I'm sorry to have to say it, but welcome to the community. If nothing else, you've found a large group of people who understand.
Personally speaking, I've tried a bunch of the supplement regimens and found that I have to alter what doctors recommend. I think it's that for a lot of people... it depends on what your body responds to. For me, while I was waiting a couple of months to get a diagnosis of re-infection (for lack of a better term), I took as much magnesium as a person can in a day because it helped, if only minimally. But multivitamins and vitamin D make me beyond sick to my stomach so I stayed away from them.
At the moment my LLMD requested I stop my mineral intake while I get reacquainted with my abx regimen. I think he's worried it'll send my system into overload and cause damage elsewhere.
Posts: 23 | From Morristown, NJ | Registered: Jun 2011
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posted
Buy what you are able to afford. I got well without his supplements.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
dbpei..WELCOME!
I believe you and I see the same Dr. (Dr H who just moved to Watertown, MA)
She is VERY good but I do find you need to come in with your own ideas. She is very open to trying new things, etc.
I didn't have the sudden hearing loss (do you have it in one / both ears and is it complete hearing loss?)
But..I did have plenty of neuro symptoms, dizziness / balance issues, and tinnitus.
I've been treating with her for 18 months and am pleased to say I'm nearly back to my old self. I'm now living a 'normal' life aside from me still being in treatment.
The majority of my symptoms are gone with the exception of tinnitus (which is now very very mild) ad a few other mild ones. But the diziness is gone as is the majority of the neuro stuff.
SHe is very good. Stick with her
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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gmb
Unregistered
posted
dbpei,
I'm also curious of your initial symptoms:
"sudden hearing loss, followed by roaring tinnitus, vestibular (balance) damage, and all kinds of neuro symptoms"
Did one or both ears go 100% deaf? I was on a vaca on the Cape in Aug 1991, and all that happened to me. I was diagnosed with a dead coachlia (sp?) possible from an unknown virus.
I was just wondering now if that was really my first tick bite. A year later my jaw locked up and was diagnosed with TMJ. Another year later serious eye problems. Still have bad tinnitus and virtigo balance.
Never put the two together until just reading your note.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
gmb - we have some similarities... I remember my jaw locking up just one time in the past few years - also had DX TMJ. The MD thinks that I have probably had Lyme for 5 years - as we can trace flu like symptoms and possibly a tick bite that summer. I never had the ECM rash, but remember having a strange rash on my leg following time in the sun about a week before my flu like symptoms. Throughout the years since then, but before my sudden hearing loss, I remember having jaw/teeth pain, knee pain, shin pain, hip pain, and a strange episode of burning pain in one of my fingers that was bent for a few days. Was diagnosed with arthritis of all those parts of my body, but the symptoms were sporadic. I also had occasional twitches and finger/thumb tremors in the past couple of years. I rarely get sick, but had a cold last December. My sudden hearing loss came a few weeks after that cold. I lost most of my hearing in one ear, but some of my hearing has returned, fluctuating back and forth (but there is still bad cochlear and vestibular damage). I have really been helped by Valtrex, an anti-viral medication that my MD prescribed 4 weeks ago. It has gotten rid of much of the ear fullness and seems to have helped me to hear a bit better. My tinnitus is slightly better - but still a nuisance. The scariest symptom for me is the feeling that my head is vibrating. I feel it throughout the day and night. I hope that will get better once the ABX does its thing (without causing more damage to my ears...)
bcb1200 - If you hadn't shared your story about Lyme, I may have never looked for Dr. H. Thank you so much!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
dbpei - I know you are new here on Lymenet so you probably don't know this.
Please break up your paragraphs into 2-3 sentences, as there are people here with neurological problems who cannot read large blocks of text. Thanks.
This place is a great source of information. It's where I started looking to help my son and found what he needed.
I've also learned SO MUCH on the journey. There are many wonderful people here who will help you.
Posts: 8978 | From Illinois | Registered: May 2006
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