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» LymeNet Flash » Questions and Discussion » Medical Questions » recently diagnosed with lyme (finally)

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Author Topic: recently diagnosed with lyme (finally)
charlestonric
Junior Member
Member # 32050

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I am just wanting to know, I am not alone and what I can do. I was misdiagnosed by a couple of doctors and several ER doctors, I through networking found a doctor in Atlanta who diagnosed me with lyme.

I have pretty strong neurological symptoms, pins and needles, trouble with speech and balance, my memory is terrible. I have one symptom that is horrible, I feel like my brain is pushing out of my head, there is terrible pressure it feels like it is pushing on my sinuses and the vision in my left eye is effected.

I have mentioned this to my doctor.
I was diagnosed about one month ago and was first prescribed 100 mg of doxy for about two weeks, with no real change, I had a picc line installed and am taking 1g of rocephin daily for thirty days I am getting ready to start my third week.

I have not noticed any big changes with this either. my ability to urinate has improved (which had almost stopped) before being on rocephin.

Does anyone else have this almost daily pressure of their brain feeling swollen and feeling disoriented a lot. I know I went too long without having diagnosis and have chronic lyme.

I look forward to feeling like I am not alone in this. I have not been able to work and worry I can't hold down my job with this disorientation and memory loss. simple things seem so hard and I find myself exhausted.

I am a 44 year old male who once was in the gym everyday and had a vibrant life and career....no longer. I recently got a card from friends at work and reading the names I don't remember them [Frown] This is the most horrible disease!!

**moved to general support*

[ 10-14-2011, 01:33 PM: Message edited by: Dogsandcats ]

Posts: 3 | From Greenville, SC | Registered: May 2011  |  IP: Logged | Report this post to a Moderator
RubyJ
LymeNet Contributor
Member # 28711

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You're not alone. [hi]
Many of us here have had the head pressure problem.

I lived with the neuro problems for over 20 years. It was the brain fog problems that finally sent me to an LLMD. I started making big mistakes at work and couldn't concentrate. Luckily, I work for veterinarians who know about Lyme in animals and they understood.

Do you have a support group in your area? It's very helpful to meet people who know what you're going through. LymeNet lists support groups. Go to the upper left hand corner of this page and click on support groups.

--------------------
"To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld

Lyme neuro symptoms for 20+ years.
Infected in Maryland.
Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy)

Posts: 261 | From Colorado | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397

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I don't have much advice on the treatment you are doing but it's very hard to find doctors in SC who know how to treat Lyme.

The unfortunate thing is that natropathic medicine is actually illegal there. Most treatments for Lyme combine drugs with supplements & herbs. The doctors who treat it are doing things that are not necessarily recommended by the mainstream. It's very hard to find a doctor who will do this in SC. You may have better luck in Atlanta, GA.

There are alot of aspects to Lyme & the co-infections. It's very complicated & not at all easy to deal with. I wish you good luck. This message board is an excellent place to get info about all the aspects of Lyme.

I read about specific strains that are endemic in SC. Just keep at it & don't give up.

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397

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PS - meditation & using audio CDs by Hemi-sync helped me with coognitive issues. You may want to try them...?

http://store.hemisyncforyou.com/

About Hemi-sync - binaural beats -
http://store.hemisyncforyou.com/pages/What-is-Hemi-Sync%3F.html

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
lou
Frequent Contributor (5K+ posts)
Member # 81

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How long do you think you have had this? There is a window of opportunity after the bite when the standard treatment will work. No one knows how long this is. Sometimes it is said to be a year, but don't count on it.

If you are too late for the early stage type of treatment then it may require much longer than the Atlanta doctor will be willing to prescribe. Did you get any indication of whether the 30 days of rocephin is the limit of his/her treatment?

So, what that means is that you may have to find someone else who will treat you longer. This aint easy in the South.

And you may have gotten coinfections too. Many of us did. That might require different meds than you have had.

Be sure to go on a low carb diet, and use probiotics two hours after every antibiotic dose. This is to prevent yeast problems, which can also have symptoms. And stay alert to any pain in gallbladder area.

Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
   

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