Does my treatment sound right??

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

kickchef3
New Member


Date Joined Mar 2018
Total Posts : 2
   Posted 3/28/2018 11:48 PM (GMT -6)   
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

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4724
   Posted 3/28/2018 11:56 PM (GMT -6)   
ya i hope girlie will explain isda vs ilads treatment ...sorry congratulations ..you found the cause ...what the id doc that failed to give me the 28 days despite a positive test forgot to say was that bartonella and other pathogens were causing my rapid nerve damage and pain. i used iv abx and bee venom therapy for over 2yr to recover mostly...please watch under our skin and read this entire site and lymenet flash burrascano guidelines

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 3/29/2018 12:12 AM (GMT -6)   
kickchef3 said...
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

kickchef3
New Member


Date Joined Mar 2018
Total Posts : 2
   Posted 3/29/2018 12:07 PM (GMT -6)   
Thanks for the information. I watched the documentary and I am reading the Burrascano guidelines. I knew lyme was often misdiagnosed, but I thought after diagnosis doctors would know more about it. My infectious disease doctor did not even think my eye symptoms and twitches were lyme related, even though they improved a lot with treatment.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 3/29/2018 1:02 PM (GMT -6)   
eye problems and twitching seem to be very common amongst many of us here.

I believe I have seen facial twitching, eyelid twitching, other twitching, and eye/vision issues on every symptom questionairre from every Lyme Literate Physician I have ever read.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2123
   Posted 3/29/2018 3:15 PM (GMT -6)   
Hi and welcome to our forum,

You have received good responses and I just would like to add that Stephen Buhner has excellent books on Lyme and the co infections and how to treat them if you should choose to use herbals.

His 2nd edition"Healing Lyme" is good not only for treatment protocols, but the scientific information on what Lyme does to our bodies.

Many members here use them.

There is also a good book By Dr William Rawls called"Unlocking Lyme"

Some people choose to combine Antibiotics and herbals also.

Whatever treatment path you choose ,members here are very helpful and supportive.


We also encourage new members to read our "New to Lyme" start here thread at the top of the page.


Take care
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 25, 2018 10:01 AM (GMT -6)
There are a total of 2,975,008 posts in 326,234 threads.
View Active Threads


Who's Online
This forum has 161321 registered members. Please welcome our newest member, lowo1.
371 Guest(s), 11 Registered Member(s) are currently online.  Details
Vaajurooby, Jack@, Flying gal, notsosicklygirl, GoBucks, TAD4207, Spanish, Sherrine, Progressing, dbwilco, Hoosierhousewife