In Need of Guidance

So Sorry you are having to deal with this.
My doctors came up with nothing, naturopaths didn't seem to get a handle on my health issues. I went to a bioresonace practitioner with an Assyra machine she came up with 2 different varieties of lyme and no co-infections. The bioresonance test was the cheapest most comprehensive test I have had it was only $150 and it came up with 3 gut parasites infections that were creating problems over the lyme. The bioresonance practitioner was a naturopath too so she knew what to look for and picked up food allergies and nutritional deficiencies. It was very helpful. Most naturopaths will diagnose you on the symptoms you present with and so will doctors. But as you have found out that is a big ask. A diagnosis like this wont get you any help from a doctor they want their own tests to tell them what is going on with you. But you will know what tests to ask for.
My lyme bite didn't sting. But you can get all kinds of infections for mosquitoes. The muscle pain and fatigue can suggest some kind of autoimmune issue.

Hello and welcome! Please check out the "New to Lyme" threat at the top of the list of posts. Also feel free to use the search box to look for past discussions on topics of interest to you. I hope we can be of help!

1) Yes.

2) Testing for Lyme is controversial. Lyme is a clinical diagnosis, meaning that Lyme-literate doctors make a diagnosis based on signs and symptoms in addition to testing. Part of how Lyme works is by creating immune dysfunction, so that you body cannot fight it off. Tests that measure antibodies to Lyme therefore can come back negative simply because the Lyme has kept the body from producing antibodies. A Western Blot test from IGenex lab is considered the best by many LLMDs, but still can produce false negatives. There's a PCR test that looks for the DNA of Lyme and common co-infections in the urine, done by DNA ConneXions. That will find any active infections but is pricey. LLMDs also know other tests to order that are covered by insurance and measure certain killer cells that Lyme targets, certain types of inflammation, etc. - tests that indicate Lyme but don't look for Lyme, because it can be very sneaky. Many of us have convoluted stories about testing....

3) Really not a good idea to avoid an LLMD. They are the only people who know what to do. There is widespread ignorance about Lyme. If you suspect Lyme, then you need to find someone who has real Lyme experience. They tend to be functional medicine docs or sometimes integrative. I have found several in my area that take insurance, so they are not necessarily more expensive than any other specialist. To find one near you, enable your email address in your profile and start a new thread titled "LLMD Near NE Ohio" so people can make recommendations. You also can do a Google Maps search for the word "holistic" or "functional medicine" near your house and then make some phone calls to ask about Lyme treatment experience (this is not something that is advertised by some doctors). Another option is to contact ILADS for recommendations. All LLMDs are not created equal, but if you are looking to explore the possibility of tick-borne diseases, then you really can't rely on a non-LLMD to have the training to make an informed diagnosis (let alone suggest responsible and effective treatment).

Good luck! I'm glad you found us.

Thanks! Do you have a link to Medical Diagnostics?

So I found an ID doctor willing to do bloodwork...so far I've had this:

Lyme AB Screen - Negative twice, two weeks apart
Bartonella Henselae IgM - Negative
Bartonella Henselae IgG - Negative

What does/doesn't this tell me? What should I ask him for next, since he's open-minded (and covered by insurance)

UAZip05 said...
So I found an ID doctor willing to do bloodwork...so far I've had this:

Lyme AB Screen - Negative twice, two weeks apart
Bartonella Henselae IgM - Negative
Bartonella Henselae IgG - Negative

What does/doesn't this tell me? What should I ask him for next, since he's open-minded (and covered by insurance)

These screening tests are pretty worthless and in no way indicate you don’t have Lyme or bartonella.