I've only been diagnosed since July, but have been sick on and off for close to 3 years now. I took Ceftin for 3 months with very little to no improvement, and am now just started new abx Amox, azithromycin, and flagyl. Only been taking for 3 days now, and not like I should cause I'm also sick with the flu.
Sometimes I feel like quitting... I'm so frustrated and discouraged at the lack or improvement.
I still doubt my lyme diagnosis even with a tick bite history and test results. I'm so afraid I have something else and am taking all these meds for nothing.
My LLMd says he feels confident it's Lyme, however my GP says it's just a guess and I may have to live with these symptoms forever.
I've been tested for everything and nothing else came back abnormal, so lyme seems most like the most obvious culprit.
These symptoms are makng me depressed, and I want my old life back.
What should I do? What are the chances this really ISN'T lyme? Are my WB's enough to feel confident in the diagnosis?
I'm sorry, but I'm getting SO down.
Thanks for listening.
Posted by Jane2904 (Member # 15917) on :
Don't give up! It takes awhile for treatment to make a difference.
My 13 year old daughter has been sick with Lyme and co infections since the start of 2008. She was treated for 8 weeks for Lyme.
Then we were told it was her age, anxiety, etc, etc. As the doctors had no idea what was wrong.
Finally got to see a very good Lyme pediatrician this past May. He is treating Lyme, bart, Mycoplasma, Erhlichiosis.
We have seen some improvements since Mid August. She is not completely better, but doing ok.
It has been almost two years since this all began, and it has been a long battle, but one I refuse to give up!!! Please give your treatment more time.
I am sorry you are battling the flu on top of everything else. Take it easy and try and concentrate on getting better with the flu, Then try and take baby steps. Please take one day at a time. You'll get there
Sending hugs
Posted by jennyflyer (Member # 12792) on :
Kareamber, if you truly do doubt the diagnosis, then for your own peace of mind you may want to go for other testing and see other specialists.
I've had Lyme for 21 years now and when it started acting up bad again 5 years ago, I didn't want to believe that's what it was so I saw every specialist under the sun.
Then I finally accepted that it was the Lyme, but the point is this: The most important part of your treatment is your state of mind and if you have all this conflict within you, it will affect your treatment.
Also, it doesn't get much more conclusive than a WB positive test.
It's been over 2 years for me since I started treatment again and while I'm better than I was 3 years ago, I'm not without symptoms, most notably pain.
Some of us have to accept that we may never again be asymptomatic, but we can at least get to a point where we can manage it and not be bedridden most days. That may not be the answer we want, but it's what keeps us from losing our minds.
Posted by timaca (Member # 6911) on :
kareamber~ I second Jennifer's approach...test for other things, see other specialists and treat what is most obviously wrong...be that lyme or other tick borne pathogens, vit D deficiency or viral problems.
Best, Timaca
Posted by KS (Member # 12549) on :
Most of us here who have gotten well felt the same way you did. I can tell you that 3-4 months into treatment I doubted I would ever get better. After 20 months of treatment, I'm doing great!! Stick with it but as others suggested, be sure to rule out other potential causes while you continue to treat.
Posted by joalo (Member # 12752) on :
You could be herxing from the new abx that you started three days ago.
I always have a hopeless, depressed feeling when I herx.
Hang in there! I doubted my diagnosis and wanted to quit in the beginning also.
We understand. Posted by kareamber (Member # 20110) on :
I have seen other specialists, 2 neuros, 2 Rheum, ENT, etc... Everything is normal.
Posted by timaca (Member # 6911) on :
Have you been tested for HHV-6, EBV, enterovirus? Enterovirus should be tested at ARUP lab, HHV-6, EBV and other pathogens (Cpn) at Focus Lab.
Were you tested for other tick borne pathogens? Babesia, Bartonella, etc?
Best, Timaca
Posted by sonee123 (Member # 18632) on :
Timaca...
How do i ask to be tested for the viral infections your talking about? I know you brought that to my attention as well and i do want to get tested for it.
Posted by kareamber (Member # 20110) on :
Timaca, I was tested for EBV, but I'm not sure about the others. I tested POS for EBV, but my dr said it was an old infection. My LLMD hasn't yet tested me for coinfections either.
Posted by timaca (Member # 6911) on :
Kareamber~ High antibody titers to EBV may indicate active, chronic infection, not past infection.
Here is a link to an article about chronic EBV infection:
Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
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