Bartonella?

Pmgonza—
I am so sorry you are experiencing the symptoms—both the illness and the circumstances surrounding the testing, lack of health care, and the stress of it all. Especially with two children and costs mounting, it is overwhelming. But you're in the right place here. A lot of us are experiencing the same challenges and can offer some help I hope.

If you haven't already, I would check out the "new to lyme' thread at the top of the page. Ticks generally carry more than one infection and symptoms can cross over from one infection to another or one infection can present more prominent symptoms. Each person's experience is different. But there are some general rules presented in that thread that do apply to most sufferers so that is a great place to start for info.

A few more questions:

Are you absolutely sure there are no lyme literate specialists in your area? It might help to post a new thread titled "Looking for an LLMD in _______" and include your geographic region. You never know. There are a few brave souls here who are self-treating but it is much easier with support.

It isn't critical to have positive test results in order for a lyme specialist to treat you—many approach treatment based on a clinical diagnosis. However, many insurance companies (if you are lucky enough to find a specialist who participates in a plan) do require a positive test for coverage. There are ways to encourage a more accurate immune response by "provoking" an immune response that is more detectable to the test. It's generally understood by most of us that the theories on new or active antibodies and differences between IgG and IgM are irrelevant. The tests simply aren't accurate enough to make those determinations and most good LLMDs ignore them.

That is an interesting statement that your doctor made: "...some people never get to the bottom of their issues. And that chronic lyme cannot be cured." It's true that there is presently no cure for lyme but many, many people have recovered to their previous health or darn close to it. And with resources like this forum and a lot of proactive dedication and some time, people ARE getting to the bottom of their illnesses and getting help.

THere are also resources on www.lymedisease.org for financial help.

Please continue posting and learning as much as possible (I know you're overwhelmed) to help your doctor help you. At least you do have someone who is willing to test—let's help him understand the best approach for testing and the best resources to interpret results and then get you to a lyme specialist.

- before testing, provoke a more positive immune response by taking olive leaf extract for 4 wks (can buy a $30 bottle in most health food stores—make sure it's pure, Gaia sells a great product)
- skip over the ELISA and get a Western Blot IGeneX test
- check out the "new to lyme" thread for great info on interpreting test results
- your current doc may feel confident enough at this point in prescribing the initial treatment Rx if you prefer to go the abx route and there is also good info in that "new" thread on what works best to start off with and can tide you over until you can start working with a specialist
- and there is also really good information about going the herbal route that won't require prescriptions.

Hope that helps to get things started—please keep posting about your progress.

-p

Post Edited (Pirouette) : 12/12/2014 4:53:39 PM (GMT-7)

My LLMD—and many others—initially test for CD57 to look for cues that the immune system is being overwhelmed by something (likely and infection) but its results in-and-of-themselves don't specifically point to lyme. The CD57 and many other symptoms and other health issues provide a good LLMD context for a clinical diagnosis. Often, once a patient starts lyme treatment the tests eventually become positive (because the immune system is getting support with the treatment).

Judging by your symptoms, I think you're definitely on the right track.

Unfortunately, due to the CDC guidelines, doctors are advised to stop testing and investigating lyme & co when the ELISA is negative. I'm not sure if you're saying your IGeneX tested for Bartonella or Lyme? The IGeneX tests are usually for lyme—Bartonella is tested with PCR tests or Fry Labs tests and Galaxy Diagnostics—although I don't know much about the latter.

This site had relatively good info but lots more on the "new" thread:
www.lyme-disease-research-database.com/lyme_disease_blog_files/test-lyme-coinfections.html

Do you have mostly Bart symptoms?

-p

Can you post your igenx test results here? Someone in this forum will be able to give you more insight.

Pmgonza,
I started having urinary problems initially. I felt like I always had to go. I was treated with multiple antibiotics for a utility that I may or may not have ever had. Then a cystscopy that was normal. Multiple urologist and obgyn appointments and nobody could help. Some symptoms and time later I have been diagnosed with bartonella, mycoplasma, and biofilm. Lyme disease came back as indeterminate.
The urinary bladder problems still happen sometimes but are no longer as bad.

Yes - the IND means that antibodies were present but at a low level. Some docs will call that "negative" and some know better and will consider it positive but will help you work toward a stronger test result. The "new to lyme" thread explains that pretty well and you can provide that info to your Dr.

-p

Good thing I wasn't there when she said she "didn't want to get involved with that" because I would have asked her if she remembers her hippocratic oath. And then I would have fired her… but that's just me. ;)

Good luck—keep fighting and searching for answers.

-p