Lyme and Brucella

Hi everyone!

In 2014, I was initially diagnosed with Lyme Disease. My main symptoms of Lyme were fatigue, weakness, occasional swollen glands, heat intolerance, and exercise intolerance. I did not have joint pain at all. My infectious disease doctor at the time prescribed me Doxycycline for 6 weeks. During treatment, I felt about 80% better and my fatigue lightened up enough where I was able to resume everyday activities.

In January 2015, shortly after my treatment, my symptoms came back with a vengeance. I redeveloped all my symptoms of Lyme and felt extremely fatigued again. From this period up until May 2021, I was seeing tons of doctors, received countless tests, and was misdiagnosed with illnesses such as Chronic Fatigue Syndrome, MS, and Fibromyalgia. What was interesting between this period of uncertainty is that in 2017, I was given an extensive blood test and found out that I am allergic to red meat. I’ve stopped eating it ever since.

Long story short, it wasn’t until May 2021 where I finally found my answer. What a big relief. After much contemplation, I went to my LLMD and wanted to get to the bottom of it, so he ordered an iGeneX test. He also ordered some other tests through a general lab of possible coinfections. After receiving the test results, I found out that I STILL came up positive for Lyme Disease (through iGeneX) and also found out that I have a rare coinfection called Brucella. I am dealing with both Lyme and Brucella simultaneously.

Shortly after my diagnosis, I began treatment with 150mg Doryx 2X a day. It has been about two weeks now on the medicine and I feel 90% better. My fatigue is hardly ever there anymore and I’m waking up refreshed. I can resume normal everyday activities without feeling tired and this feeling of strength lasts for the entire day.

Is there anyone in this same situation? How long do you think my treatment would be? My LLMD said that I’ll be on Doryx for at least 2 months but the exact timing is still ambiguous. How is the prognosis after treatment stops? My worry is that my symptoms will return after I stop the antibiotics.

I'm glad that your symptoms resolve so quickly and significantly after such a short time on a single antibiotic! That's very fortunate for your quality of life, and not typical, especially after such a long-term infection. Is your doctor planning to pulse the antibiotics and/or add in additional antibiotics or other treatments? Lyme spirochetes are very crafty and will hide and morph to evade antibiotics, which is why some people might feel relief and then have symptoms return after stopping antibiotics. Sadly, feeling better initially can just mean that the spirochetes have changed into cell wall-deficient forms (not vulnerable to antibiotics) or cyst forms, or have protected themselves by forming biofilms and burrowing into tissues and organs that it's hard for antibiotics to reach. If your LLMD's only plan is doxy for two months, then he doesn't sound especially Lyme-literate, and you might want to see someone else. I know you said there were more test results forthcoming, though, so perhaps he'll have a more thorough plan for you the next time you talk. In general, the way to avoid relapsing is to treat this illness thoroughly and holistically (address all forms of microbes as well as the dysfunction in various body systems - gut, nervous system, immune system, etc.

With regard to testing, IGeneX and many other tests look for antibodies to Lyme, which you will produce for the rest of your life, once exposed. We all will, unless our immune systems are seriously compromised. (In fact, Lyme messed up my immune system so much that I didn't test positive for Lyme on antibody tests, even through specialty labs, until I had been treating and improving for almost five years.) So it's not a surprise that you continue to test positive for Lyme. Antibody tests are not a measure of treatment progress, so don't bother testing later on unless you're looking for other infections. LLMDs make a clinical diagnosis for Lyme and other tick-borne infections - that is, they diagnose based on signs and symptoms, with lab tests just being one factor among many. Measuring treatment progress is similar. Some LLMDs use measures of inflammation and immune function to gauge progress, like the c4a or CD57, but those tests are non-specific, so again, just one factor among many.

What is the typical treatment for long-term Brucella?

Alpha gal syndrome causes a red meat allergy, and can result from tick bites. This was in mainstream news within the last few years, so I'm surprised that the doctors administering the allergy test didn't wonder about tick-borne disease for you at that time.

I'm sorry you had to wait so long for some answers, and I hope that you continue to feel much better!

dcd2103 said...
I think these things wrt to timing are different for everyone.

Dr Phillips had a baaaad case of brucella,
which he documents his battle with quite vividly in his book Chronic, might be worth a read. If I remember I think he may document some other abx he used to beat it.

Do you live in the south west? Sounds like you may have alpha gal syndrome w the red meat allergy from the bite of a lone star tick

i don't have the book dcd - have only followed him through his videos - i recall he does speak about Brucella as being sometimes one of the harder infections to clear - but i thought he himself had a bad case of bartonella - rather than Brucella ?

I just reread his story in the book garzie. While initially he thinks he may have had bartonella and treated for it, it sounds like he thinks (despite negative testing) that brucellosis was the main culprit and didn’t get better until he started treating that. The symptoms sound more like brucella than bart, he doesn’t mention much neurological stuff. I was mistaken tho, he doesn’t mention which antibiotic regimen he used for brucella

Act it’s a fun read and interesting, but I just went and looked at it again and I was wrong he doesn’t provide any info on his protocol for brucella. Still interesting tho

dcd2103 said...
I just reread his story in the book garzie. While initially he thinks he may have had bartonella and treated for it, it sounds like he thinks (despite negative testing) that brucellosis was the main culprit and didn’t get better until he started treating that. The symptoms sound more like brucella than bart, he doesn’t mention much neurological stuff. I was mistaken tho, he doesn’t mention which antibiotic regimen he used for brucella

OK good to know - cheers!