Welcome -- sorry to hear you are having such a hard time.
This being the end of summer/early fall, it seems to be a time that many people with Lyme start to show symptoms, if that's any comfort to you.
The only test name I see in your post is:
Western Blot for lyme -- result: Negative
Has your doc done any other tests for Lyme or other infections the 'Lyme' ticks often carry (babesia, bartonella, ehrlichia, some others)? Your doc sounds well meaning, but based just on your history above, it sounds like your doc may not understand Lyme and its co-infections as a Lyme specialist would. In addition, even the Western blot test can fail to register a Lyme infection because Lyme suppresses your immune system, and the Western blot test is looking specifically for your immune system to be cranking out lots of antibodies to kill the Lyme. So you can have a roaring case of Lyme, and the Western blot can totally miss it.
In your situation, I would find a Lyme specialist and take copies of your tests so far, and get a second opinion.
Here's the problem: your current doc likely thinks s/he IS a 'Lyme specialist', but there is a huge split in the medical community about how to diagnose and treat Lyme and its co-infections. There are other tests that can be run (specifically a PCR test through IGeneX Labs) that most docs who are not Lyme specialists will not use. That's why I would see a Lyme specialist who is an ILADS member -- it's the best (tho not perfect) way to find a doc who really understands Lyme.
I personally went through 20 docs before I found one who (in desperation) tested me for Lyme, and I was "lucky" (?!) that my test result was positive. Unfortunately, the doc was so clueless that she said I could not possibly have Lyme, never mind the positive test.
In your situation, I would find a Lyme specialist for a second opinion. If you email to
-- contact [at] ILADS [dot] org --
and tell them where you are located ("near Toledo, Ohio"), they can send you names of Lyme specialists near you. It's not foolproof that the doc's name they send you will work out perfectly, but it's what I would do, since it's the best way to locate a Lyme specialist.
Also let us know your area (again, like 'near Toledo') and someone here may have a recommendation to make. We do NOT post the names of Lyme docs in this website in public, to avoid the docs being harassed by non-believing medical boards who think Lyme = sniffles.
Above all, don't give up -- let us know how you do and what questions you have and how your LLMD search goes. We do NOT normally post the names of Lyme specialists here in the open, because in some states, they are harassed by local/state medical boards for over-treating Lyme and its co-infections. (The real problem is that most docs UNDER-treat Lyme and its co-infections.)
And again, if you would also let us know what area you live in (again, something like 'near Toledo OH'), we might have some ideas for you of good Lyme docs nearby.
Good for you for not giving up! I was ill for most of a year before I got diagnosed, so I truly understand. Hang on, and let us know how we can help, okay?
You could have Lyme that is testing false negative. Do you mind sharing your Western Blot results with us? Specifically, what bands showed up, if any? And where was the labwork done? Many mainstream labs leave out significant bands that could show Lyme.
Here's another thought that stood out as I was reading your post. You could very well have a bad case of Bartonella. Most Bartonella symptoms can also be caused by Lyme, making it difficult to recognize at times. I wouldn't be surprised if some Bartonella patients can't get well on Lyme meds after a clinical diagnosis of Lyme because they don't have Lyme and need different meds.
To learn more about it, you can look up some articles and papers by Dr. Breitschwerdt at North Carolina State. While he's a veterinary professor and researcher, he has made it his mission to raise awareness of and attention to Bartonella. He says it's a hidden epidemic and it's everywhere, not just in Lyme country. He was an author on one 2012 study in Maryland with a rheumatologist. A surprising number of the patients had undiagnosed Bartonella. He also published a very recent study on veterinarians, finding a surprising number of them had undiagnosed Bartonella.
Doctors don't know it can be bad. They think it's the "mild, self resolving" Cat Scratch Disease they learned about 15 years ago. They were taught it doesn't need to be treated, that immune systems will take care of it.
Well, that turned out to be a bad assumption. Researchers at UCSF started finding bad cases of it in their immune suppressed HIV patients and they documented many of the serious symptoms. Then they started noticing it in immune competent people, too.
I've had nearly all the symptoms you describe, but then I have Lyme, Bartonella, and Babesia. Over time, I realized the Bartonella was worse than I thought. I had a nasty relapse a year ago, and it came back worse than it was the first time.
The first time around, I ended up hospitalized due to a swollen, excruciating liver (and ribs). The GI doc told me my terrible looking liver was "normal", which was hard to comprehend. Much later, I found a UCSF document with images of scanned livers with Bartonella, specifically a condition called "Peliosis Hepatis". One of them looked exactly like mine. A shame the hospital GI doc didn't know anything about it.
Dr. B's studies have shown that about half of Bartonella sickened patients either test false negative for Bartonella Henselae and/or have a different species that the tests don't pick up. You could certainly ask your doc for Bartonella Henselae testing. If you're lucky, it will be positive.
Mine was below the standard cutoff for positive at IGeneX, but they called it "Not Negative". They say that antibody production drops over time. The tests are designed to catch an acute infection, which is 4-8 weeks after initial infection. People with a chronic infectionw will likely test "negative."
So you can get tested at IGeneX. They also offer a test for Bartonella Quintana. People who have both of these species at once are often sicker.
The most accurate test, if you're testing antibody negative, is the culture test that Dr. B. developed with Galaxy Labs. The bacteria move in and out of the blood in a 5-7 day cycle, so they recommend 3 blood draws in a week. They say you can be negative on Monday but positive on Tuesday. They've never had a patient be positive on all 3. You can just do one draw, but if it's negative, it's inconclusive. I don't know if all insurance companies will cover the cost, but it might be worth the out of pocket expense if you can finally have an answer.
Bartonella can be transmitted by over a dozen biting insects, such as biting flies, fleas, lice, and ticks. You can also get it from the scratch of a cat or even a dog. The animal might not look or seem sick.
Keep us posted!
Another note that is important to consider: Dr. B has documented that Bartonella can be passed from mother to child en utero. Lyme can, too, but the medical establishment still stubbornly denies this.
Young children can be treated successfully for both. The sooner the better. That's why a correct diagnosis is important. Even if you do have Lyme, know that most of the antibiotics for Lyme do not treat Bartonella. They both need long term combination therapies, adjusted to what works for the patient.
P.S. You might want to read the article called "Bell's Palsy of the Gut." It explained a whole lot of what was going on in my very messed up gut.
Here's an NC State web page on Dr. Breitschwerdt.
His 2012 CDC study has a list of symptoms identified in the study on page 6.
You might also try googling a symptom with the word Bartonella to see what other patients describe. (I had over a year of chronic GI problems that led to malabsorption, deficiencies, and a variety of subsequent problems, including h.pylori and campylobacter.)
I saw a comment on a FB page that the rheumatologist in this study (2nd name on the list) was good at diagnosing and treating Bartonella. If you're near Maryland, you might look him up.
Is there a way to upload my results here?