I'm a fairly recent case (possible exposure at the end of May) and have been diagnosed with Lyme by an LLMD.
I had a number of tests done by Labcorp with nothing leading to a conclusive diagnosis. No bands were detected on my Western Blots or Elisa. The only suspicious test result was a low CD57, which I hear can be suppressed by other infections...
I was placed on combination antibiotics (400mg Doxy and 3g Amoxicillin per day). I showed some signs of improvement during the first two weeks, but have begun deteriorating. My initial complaints that led me to the LLMD were random joint pain, fatigue, headaches, urinary tract issues, and tinnitus. The joint pain, fatigue, headaches, and urinary tract problems cleared up initially. Now, the fatigue and headaches have returned, accompanied by brain fog and balance issues. I didn't have any signs of a herx shortly after beginning treatment.
I'm at a loss for why the antibiotics seem to be failing and wonder if there could be another explanation for my problems. I also live in Texas, which has a comparatively low incidence of Lyme.
Thanks for reading...
Posted by sixgoofykids (Member # 11141) on :
Often abx need to be switched around. That is common. Be sure you're talking to your LLMD about symptoms.
Lyme is a clinical diagnosis. Test are used to support the diagnosis but not to make the diagnosis. But, they can be a help if bands show up on the Western Blot.
Labcorp is not known for having really accurate Lyme testing. Did you have an IGeneX WB? Do you have the bands that were positive with Labcorp?
Posted by Veracity TX (Member # 26637) on :
I should also mention that I've been on the antibiotic routine for a little over a month. I take Diflucan once a week to help control yeast growth.
Could the antibiotics be causing the latest batch of problems?
Posted by sixgoofykids (Member # 11141) on :
I didn't have my first herx for 24 days. I felt better initially, then felt so bad I couldn't even walk to the bathroom without help once the herx hit.
Posted by Veracity TX (Member # 26637) on :
My WB's were with Labcorp and showed negative on all the bands.
The only hitch is that the LLMD I saw has since retired; this makes switching antibiotics a difficult prospect. The nearest reputable LLMD is in Louisiana - about 8 hours away from me.
I'm tempted to pause the antibiotics just to test if things improve.
Posted by Veracity TX (Member # 26637) on :
How long does a herx last? My recent problems have been ongoing for little more than a week now.
Posted by sixgoofykids (Member # 11141) on :
I flew from Ohio to NY, rented a car, drove 2 hours to my LLMD, spent the night, then the next day drove back to the airport and drove home. Only the lucky ones have LLMD's close by ...... that's just how it is.
Why did the LLMD diagnose you with Lyme? What were his reasons?
Posted by sixgoofykids (Member # 11141) on :
My first herx lasted a couple weeks. When I started one combo of drugs the herx lasted six weeks.
Posted by Veracity TX (Member # 26637) on :
At the end of May, when all this originally started, I went to the ER with a fever of 103F, headache, rapid migratory joint pain, diarrhea, and other flu-like symptoms. Bloodwork was done, but no diagnosis was offered. I began feeling better after two IV drips of saline and was discharged.
After several weeks of continued problems, I decided to search for an LLMD. In the initial visit, he actually suspected Bartonella and thought Lyme was unlikely. The reasons for the suspicions were the fatigue, tinnitus, and joint pain. He thought Lyme was unlikely because I presented with a fever at the ER - which Lyme supposedly can't cause.
After the test results came back, he ruled out Bartonella and confirmed Lyme based on the CD57.
Posted by arkiehinny (Member # 26546) on :
You could very well still have Lyme. Tests aren't conclusive, especially if they aren't through Igenex. I can tell you I had a negative test...positive on a few bands though. All the symptoms point to Lyme. Remember, Lyme is a 'clinical diagnosis'. Tests cannot really be relied on for everything.
Posted by sixgoofykids (Member # 11141) on :
Oh, okay. That makes sense. I've never heard that Lyme can't cause a fever, it's on some symptoms lists for early Lyme. I would look for another LLMD .... if the one in LA is closest, I'd make the trip.
You're still catching this earlier than most of us. It can be a real nightmare. I was disabled by it for years!!!
Posted by Richard1062 (Member # 19233) on :
Good luck, TX. It's all very confusing for many of us, much of the time.
Posted by Veracity TX (Member # 26637) on :
Thanks for all the support, folks. I may see the LA doctor and get some Igenex testing done. If I show zero bands on that test, I'll probably have to rule Lyme out...
Thanks Again.
Posted by Veracity TX (Member # 26637) on :
Have any of you had luck with supplements breaking down the biofilm/cyst forms?
I've ordered some supplements like Cat's Claw and Bromelain. The Cowden Protocol seems promising, but extremely expensive. Expensive to the point where I think the manufacturer is almost exploiting us.
Posted by Lymetoo (Member # 743) on :
Early testing is often negative. So I would get the test thru Igenex.
www.igenex.com The Western Blot is test #188 and 189. It will cost around $200.
Bromelain is good for you! Be sure you are taking a high quality probiotics such as www.theralac.com
Lyme disease is all over Texas. The doctors just aren't diagnosing it.
The Dr in La is very good. Call tomorrow for an appointment. I have the ph # if you need it.
Every 3-5 wks you will herx hard. Sounds like that is where you are. The herx can last a week or more as Six said.
Posted by timaca (Member # 6911) on :
First, I'm assuming that your primary care physician has ruled out other possible reasons for your problems. If not, do that first.
Next, look at other infectious pathogens such as HHV-6, EBV and enteroviruses. Focus is a good lab for testing for first two, and ARUP lab for testing enteroviruses.
The symptoms you describe while some are Lyme, some may also be a co infection.
The high fever with flu like symptoms can be the onset of Babs which is a different treatment than Bart or Lyme.
Note there are many reasons for false negative readings on blood tests so even if you received a negative that does not mean you DON'T have Lyme or one of its co infections.
I suggest you read Dr. B's Advanced Topics In Lyme Disease.
You, as you will unfortunately find out, NOT your doctor, will have to manage this. If its a normal MD and not a LLMD the management is only worse.
Good luck.
Posted by bcb1200 (Member # 25745) on :
Also..the CD-57 is specific for lyme. Only lyme affects the CD-57. Nothing else does. Good luck!
Posted by LightAtTheEnd (Member # 24065) on :
Lyme definitely can cause fevers. That was my first Lyme symptom.
Very high fevers are more likely to be babesia or Rocky Mountain Spotted Fever.
In either case, if you test positive or have symptoms of any tickborne disease, it is likely you have Lyme as well.
All your symptoms are ones that can be caused by Lyme. There is no test that can rule it out. If you have Lyme symptoms and a positive Lyme test, then you have Lyme. If you have a negative Lyme test, it means nothing either way.
If you do have Lyme, it is very common that you will have a herx starting 3 days to 3 weeks after you start new antibiotics. I have had a couple of them lasting 10 to 13 days. My symptoms have tended to be mild compared to many others on Lymenet, and I have had minimal herxing compared to what others report. Herxes can last for months instead of days, or a common pattern is that they come back every few weeks with the Lyme cycle of reproduction.
Lyme is said to have a 4-week cycle, although for me it's always been more like 2 or 3 weeks. I would have a symptom flare every few weeks. Other coinfections can flare closer together.
If your LLMD thinks you have Lyme, then I would take the fact that your symptoms got worse after 2 weeks on strong antibiotics as confirmation that it is Lyme.
Don't be fooled into abandoning your treatment early and looking for another diagnosis--if you don't treat the Lyme, it will get worse. It may go in and out of remission by itself over the years, but it will not go away. If a non-LLMD gives you another diagnosis, it will probably be that you have several random and unrelated autoimmune conditions that have no cause or cure, that you just happened to get all at the same time, or else they will try to tell you that it's all in your head. We have all been there before.
Many people never saw the tick, or (in my case) saw the tick and never got a rash, or got a rash but it didn't look like a bullseye.
You mentioned "random joint pains." When the pains and other symptoms come and go, and move around to different parts of the body, that is typical of Lyme. Do your pains tend to be on one side of the body? That is also typical of Lyme.
Do not take any steroids as long as there is any chance you could have Lyme or have had it in the past. Steroids depress the immune system and allow the Lyme to get much worse and harder to treat.
Posted by trigal2 (Member # 20578) on :
Well it could always be something other, but so hard to tell.
I went 5 years thinking ALL my Neuro. symptoms were coming from lyme (which I DID have), but it also turns out that I had another Neuro. condition that was congenital and mirrored alot of Neuro. Lyme symptoms. However, there were a few symptoms that did not fit in with the lyme picture.
I continued Lyme treatment but persued other explainations and found that I had a structural issue in my head/skull that required brain surgery to fix.
Did Lyme make this other condition worse? Probably since it causes inflammation in CNS but was not the cause of this problem.
So, IME, not EVERYTHING is Lyme and it is always good to rule out other things. Had I not, I could have been looking at a life of continued Neruo. deterioration which my recent brain, neck and skull surgery has now stopped the progession of.
Not saying this is what is going on with you - just saying that we should not be blind sided by thinking EVERYHING is caused by lyme.