I saw a Rheumatologist today hoping to get some answers and they just did more blood work and told me to come back on April 14. He said that it could be Lyme Disease but I did have a Lyme test shortly (within a day or two) of being on prednisone for over two weeks and it came back negative. I am at a loss. He is doing a Western Blot along with a lot of other blood work. Could this be Lyme Disease? If not, what other options?
I was on levofloxacin (Levaquin) for my Bart, and I had to stop after six weeks when I developed pain in my left achilles heel. I was disappointed as my anxiety pretty much disappeared on it. Levaquin is known to cause tendon rupture, especially in the achilles tendons, even weeks or months after a person stops taking the drug.
I had what I thought was an evil flu or Lyme disease--body aches with an other-worldly headache that caused pain in my jaw. No fever or stuffy nose, but mucus dripping down the back of my throat. Whenever I bent over and my head was upside down I saw stars--my first clue that I had a sinus infection of some kind. I am on round three of antibiotics (now on levaquin) and while it's holding the infection at bay it doesn't seem to be eliminating the infection, either.
Took it for an upper respitory infection for 3 days and had terrible problems. The Dr then gave me Levaquin, took for 7 days, with the same side effects. Just this past winter, I had a UTI that wouldn't go away and was treated with Biaxin and another abx (I can't remember which one, I have to look...maybe Ceftin) and had a bad reaction to both of them. I went to the health food store and took a D-Mannose cranberry supplement instead of abx to get rid of the infection.
As I read your description, I imediately thought of Lyme Disease - sounds classic. What kind of testing for Lyme was normal? Was it the ELISA or did you have a Western Blot?
Do you know what the strength of the MRI machines was?
Your initial symptoms do sound like you had a localized lesion in the thoracic spinal cord. But, the way the symptoms then generalized to involve the entire body does not sound at all like MS.
Hi everyone and thank you for this forum.
I was recently diagnosed through IgeneX (IgM/IgG both positive and postitive IgG titer for E. Chaffeensis - HME). My G suspects Bartonella as well because of my history. I had positive ELISAs in the past and one band on traditional western blots. Like many of you, I've been sick for a long time.
I've been on high daily doses of steroids for the past 9 months and will need to be on them for life.
after reading about a possible diagnosis i came to the lyme disease issue and decided to get tested by IgeneX. According to the lab i was positive for Lyme disease (western blot), but negative according to CDC. Later I decided to get tested for coinfections and came out Bartonella positive (menaing i have had the bacteria).
the reason Lyme Literate Medical Doctors are familiar with Bartonella, is that it shows up a lot in Lyme patients. Ticks that carry Lyme also carry Bartonella. Since Lyme is immune suppressing, Bartonella with Lyme is generally worse than Bartonella by itself.
Most doctors are completely unaware of Bartonella, or think it is nothing to worry about. I have it, and I had to spell it for my PCP after I got diagnosed by an LLMD, because she had never even heard of it.
I do remember one paper from several years ago (could be out of date already) that said the only antibiotic class known to penetrate biofilms is fluoroquinolones (Levaquin, Cipro, et.al.), which is probably why Levaquin is used so much for UTIs. (UTIs are well known to make biofilms, resulting in stubborn and relapsing infections.) Levaquin is often good for treating Bartonella. I felt noticeably better on it, but then developed tendon pain and had to stop.
others, their results from their Western Blot(s) and ELISA.
I have had 4 negative Lyme Serology, 1 IND for a co-infection and then 4 positive bands on my western blot. I am curious to see how many people have had negative tests for the ELISA and how many bands came back positive on the WB and which bands were positive.
Welcome to MedHelp Lyme --
I am sorry for all you have been through, and are still going through!
Your history as you relate it is very well done, and I suggest you copy-and-print out your post above to take with you to an appointment ***with a Lyme specialist.***
In the medical community, there is much confusion about Lyme, and all the comments and reactions and treatment you got from the various medical personnel are often given, without any serious thought of Lyme.
I have been suffering from almost every symptom listed for Lyme Disease since being diagosed in 2007. Most recently I have had seizures and cognitive problems causing problems at work.
Does anyone have any information regarding preferred treatment other than antibiotics and pills for the symptoms. I rarely have a day withont pain.
Help!
To be honest, even though I tested WB/IFA CDC positive through Igenex, I was a little skeptical about really having Lyme disease with all the contradicting information and since I had no rash. I can now say with confidence that I atleast have a spirochetal infection, because these J-H reactions are like nothing I have ever felt. I saw some videos on YouTube of other people having severe J-H reactions, and it's comforting to know that I am not alone.
Hi All,
My husband wrote the previous post regarding myself with possible lyme's disease. Here are all my symptoms: headaches, joint aches, swollen lymph nodes in neck, ear pain in and behind ear, jaw pain with some tooth pain, fatigue, dizziness (almost like a brain fog), some word-finding difficulties (could be related to fatigue), and some occasional tingling/numbness in arms, hands, and left side of face. All these symptoms are intermittent. What are your thoughts?
My lyme doc knows that levaquin neuro symptoms are identical to lyme. Since the lev my migraines I had for 30 years are gone.. I am unable to process any meds anymore. nothing for pain as it seems my entire system including temperature has switched.. I am very damaged.. Because any antibiotics are very dangerous for me to take based on my system, I am terrified to take omi cef that my lyme doc wants me to try.. He feels I have both..
My tests shows the following.30 ++, 31 ind 39 ind 41**.
If your symptoms are worsening again, then that means either the Bart or the Lyme or both are still there. Erythromycin is a first choice for b.quintana, but for b.henselae the first choices are rifampin or levaquin. A short end treatment is 3-4 months.
I personally wouldn't go back to the ID doc. They are indoctrinated to believe that once they have given you a month of abx for Lyme, you are cured. In fact, they can experience serious consequences if they violate the IDSA guidelines.
Recommended
