I am in a state where Lyme is "rare". I came to the conclusion I had lyme doing my own research. The first doctor I went to would not test me for lyme. The second one tested me and I was positive on western blot. I was having pain in a majority of joints, hair loss, cognitive problems(memory and confusion) , twitches (in my hands, muscles, eyelids), I was cold for no reason, shooting pains in arms and legs, eye problems (floaters, spots, pain, blurs, shadows), rapid heart beat, Numbness/tingle (in hands,arms and feet), stiffness in hands and neck, headaches 5-6 days a week, muscle pains, and severe fatigue.
I was put on Doxycycline 100mg twice a day, they said it would be for a few months. I went back after three weeks to check in, I was sent to a infectious disease doctor. He said I did not need more antibiotics after 28 days (yesterday). I still have muscle pains, joint pain, stiff neck and headaches, confusion and memory problems, numbness and shooting pains, mild twitching, eye floaters/spots and fatigue. He said this is leftover inflammation.
Does this sound right? I have had a lot of improvement since first starting treatment. I have read about fatigue and joint pain lasting after treatment, but should I still have this many problems? Should I try to get more antibiotics before my insurance ends?
Any help is appreciated thanks
Hi kickchef3 welcome to our community. Sorry you have lyme disease...but glad you found your way here.
Your Doc isn't lyme literate so he doesn't know (and doesn't WANT to know) that 4 weeks of abx is not enough...even in early stage. With the symptoms you have, you're going to need to see a LLMD for treatment. No one knows how long treatment will last - it's different for everyone...but I can tell you it won't be measured in weeks... it will be many months...to years. (sorry, but it's the truth)
The Lyme literate Docs will follow ILADS (International Lyme and Associated Diseaes Society) and know that lyme rarely travels alone...and you not only need lyme treatment, but also a coinfections or two..or three - two of the 'big' ones being Bartonella and Babesia.
The 'other' Docs follow IDSA Guidelines - which basically says lyme is difficult to get and easy to treat - i.e. a few weeks of antibiotics - even when it's disseminated and not an early infection. They also believe that after that short-term of antibiotics, what you have left over - i.e. symptoms - is not active infection, but Post Treatment Lyme Disease Syndrome (PTLDS) - which is damage to the body.
bluelyme mentioned "Under Our Skin" It's a documentary about
lyme. You can rent it online here:underourskin.com
I think it's $5.99?
There's also a sequel: Emergence. And it shows how the people in the first doc are doing several years later
The good news - is you are now informed and can start making plans to treat and overcome this..
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi