Need llmd in GA USA, I think..guess I'm the new (sort of) guy, not sure if I am in the right place

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

keroseneburner
New Member


Date Joined Dec 2016
Total Posts : 5
   Posted 10/23/2017 9:32 PM (GMT -6)   
been lurking here for a bit, Here goes a heck of a first post,
for about 3 years now I have been fighting a mystery illness. I have at least 80% of the symptoms listed for Lyme. Prior to the problems, I had a lone star tick embedded in my side in GA, no bullseye rash tho. I also travel and spend a lot of time in the mountains of CO. I am very outdoorsy and have had many ticks bite me over the years. I have spent literally tens of thousands with doctors, had 2 surgeries and still am no better than when it started. Early on my family dr did an elisa for lymes and it was negative. I personally paid for a western blot last year, it came back all bands absent. I have better times and worse times but it never goes away. I have some Gastro issues with it, one of my doctors suspected my gall bladder was bad as nausea is one of the symptoms. One evening after the dr had ordered a gall bladder ultrasound that morning....I began running a fever 100+ DR told me to go to the ER as he was already suspecting gall bladder. At the ER gall bladder ultra sounds and ct scans came back fine, they gave me an iv of a broad spectrum anti biotic (can remember name, memory sucks now too). I felt better the following week to ten days or so than I had since this started. My fatigue was much better, overall just great, not 100% but much better. Then it slowly came back over the next few days. My family doc says the antibiotic probably had an anti inflamatory affect. Anyway, Maybe someone can offer advice or point me in a direction to go...help?

Post Edited (keroseneburner) : 10/24/2017 6:32:00 AM (GMT-6)


cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 723
   Posted 10/23/2017 9:57 PM (GMT -6)   
Hi, Welcome and sorry you're here. It sounds like Lyme. I had lots of tests for years and everything was always fine. The Elisa is not a good test. It's such a travesty. You need to find an LLMD - Lyme Literate doctor because most regular doctors don't know how to treat it. You can post "Need a LLMD in ______ and enable your email so people can send you recommendations. Also, read the New to Lyme, start here. Lots of good tips on how to feel better as you go through this ordeal. Good luck. We are here if you need us.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals, multiple co-infections
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.
Oct 2017 Dx Bartonella - @95%

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 10/23/2017 10:17 PM (GMT -6)   
keroseneburner,

Welcome to the forum! So sorry you're sick. I know all about "mystery illness." Mine was a mystery for 7.5 years.

Sounds very suspicious of Lyme to me - and you have known tick bites. I've never had a known tick bite or bull's eye rash, but my DNA Connexions test found Lyme and ehrlichia bacteria in my urine sample! I'm from GA. If you're living in GA, please do look for a Lyme literate doctor, because the doctors in my town in GA think there's NO LYME IN GEORGIA because the CDC says so.


I believe there's more information about Lyme testing in the New to Lyme section, too, so check that out.

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 10/23/2017 10:41 PM (GMT -6)   
Hi, keroseneburner:

Here's the thread the others mentioned:

New To Lyme? Start Here!

I'm sorry you had to find us, but glad that you're not alone on your journey.

Best of luck,
The Dude

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 2132
   Posted 10/24/2017 2:07 AM (GMT -6)   
Sounds like a dysbiosis caused by something. I tend to say it is multiple pathogens, but borrelia could certainly be one of them. You may have to do like me and reduce animal protein intake. That is the very last thing I wanted to do but it worked. I now just talk about hunting instead of hunting.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2305
   Posted 10/24/2017 5:25 AM (GMT -6)   
Hi and welcome to our forum,
Sorry about your symptoms and your struggle to find answers.

Many here have been through this also.

Since you have been bitten by ticks, it would be wise to consider tick borne diseases.

Ticks also carry more infections than Lyme.

There is more reliable testing that can be done through Igenix and DNA connections.

Also in some cases the testing has been done too early after a bite or transmission of the bacteria and no antibodies have been built up yet. So one can test negative.

Our new to Lyme page has important and useful information about symptoms, treatment, detoxing that may be of help to you.

We also can help you find an llmd(Lyme Literate Md) here. You would need to enable your email so that members can send you recommendations.

You can also go to ilads.org and do a physician referral request there.


Thanks for joining us and I wish you the best of healing, Jo
Forum moderator

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 10/24/2017 6:03 AM (GMT -6)   
Hi Kerosene -

We lived in the south for a time. We brought our love of sweet tea up north with us.

We, too, have been bitten by numerous ticks. GI symptoms are very prevalent in our daughter. Just recently she tested positive for Rocky Mountain Spotted fever.

RMSF can be transmitted by a Lone Star Tick and is found in CO and the south. Also, Bartonella is another bugger that can wreak havoc on the GI system.

You didn't state if you have been seen by an LLMD or LLND. If you haven't, I would. Not that my daughter is free and clear but we are getting answers that traditional medicine haven't been able to provide.

Warm wishes for a great day.

Peppermint Tea.

Post Edited (PeppermintTea) : 10/24/2017 2:25:22 PM (GMT-6)


keroseneburner
New Member


Date Joined Dec 2016
Total Posts : 5
   Posted 10/24/2017 7:46 AM (GMT -6)   
I have not been seen by a llmd. Traditional md's have told me I had everything from gall bladder disease to an extremely rare genetic blood disorder that has all turned out to be false. I have edited my title to need an llmd in GA, and I think my email is turned on now. I don't have as much joint pain as many report with lymes, mainly my back and right hand (maybe just getting old at 46 lol) I was in Colorado for a week around the time this started (hiking etc) and had a really, really bad headache that lasted for a week after I went home. (think severe hangover but 24 hours a day) I chocked it up to a touch of altitude sickness but not so sure now. The one thing that stands out is when I got IV antibiotics I felt better, a lot better. I had given up on lymes or other tick borne illness as the western blot had zero bands. A poster on another forum had similar problems and it turned out to be rmsf....that is why I am back thinking tick bite. Otherwise my doctors (and there have been many) are baffled as my blood work is always good. Thanks for the replies, hoping to get more info and a llmd who is recommended. I find it bizarre the way medicine treats tick borne illness. Truly bizarre.

Edited to add the IV antibiotics I got from the ER was called Zosin (not sure of spelling)

Post Edited (keroseneburner) : 10/24/2017 8:19:03 AM (GMT-6)


keroseneburner
New Member


Date Joined Dec 2016
Total Posts : 5
   Posted 10/24/2017 12:49 PM (GMT -6)   
How likely is a false negative on western blot with zero bands present? I am just trying to limit my costs as I have already spent over 20 grand with ZERO results.

keroseneburner
New Member


Date Joined Dec 2016
Total Posts : 5
   Posted 4/10/2018 2:28 PM (GMT -6)   
So it's been a while, My gall bladder was bad second scan showed chronic inflammation...but no stones, it was removed. Not sure if tick borne pathogens could cause the chronic issues with it but my nausea is gone. Whew. The rest of my issues are still there in full swing. I contacted ilads to get a recommendation for a LLMD, there were only 3 in GA apparently one is not a md one has some pretty bad ratings overall. I don't mind going to one, it seems there are a lot of Drs who say they are "llmd" but really aren't. I took the Dr. Horrowits lyme questionnaire and came up with a score of 77, anything over 40 is suspected tick born illness www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html Don't know how accurate it is. I don't have a lot of the joint pain other than a really stiff spine. I know a doctor can't be recommended but can anyone recommend a way to weed out the quacks?

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 4/11/2018 8:48 AM (GMT -6)   
I think you would be wise to see an LLMD.

I think you should pursue getting another Lyme Western Blot. At the beginning of my mystery illness I had an embedded tick. It may have been a Lone Star. I did not have a bulls-eye rash.

you should contact Girlie by e-mail if she doesn't reply in here for an LLMD recommendation. Just click her name to see her e-mail.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 21, 2018 5:16 PM (GMT -6)
There are a total of 2,995,211 posts in 328,210 threads.
View Active Threads


Who's Online
This forum has 161321 registered members. Please welcome our newest member, livin'life.
306 Guest(s), 10 Registered Member(s) are currently online.  Details
Alcie, tedgard, mattamx, netsavy006, Michael_T, 18yearsandcounting, InTheShop, garyi, UCer23, k07