Any anecdotes on additional testing after starting herbs?

Hello all,
I've been lurking here a while, and now I come to you with questions that maybe some of you can give your experience on. Feel free to ask any questions I haven't addressed.

Disclaimer: I have not yet been diagnosed with anything, that's still in the works. Right now Lyme is simply a suspect.

38-Year old Female. Living in the boondocks of MA. I've been dealing with some pretty hefty health issues this year. It started with a random outbreak of Shingles in very late Dec/Early Jan. At the time I didn't realize it was the "start" of anything. Let me give you the list of my major complaints:

Migratory joint pain, severe insomnia, heart palpitations that have been as low as 38, and as high as 167. (my normal is between 70-80.) Random shooting pains that feel "electric" like a bad wasp sting, connective tissue pains, like feeling like I have tendonitis in my elbow or that my achilles tendon might snap at any moment. stabbing localized headaches, fatigue, random bouts of feeling "unwell" with or without swollen neck lymph node & a sore throat. (It never seems to amount to anything. goes away and then comes back days later) word recall is in the toilet. brain fog can be bad at times, but I mostly have my wits about me. (I may enter the same room 5 times before finally remembering the real reason i went in there. but it's not constant and I can still organize a grocery list and follow recipe instructions and play video games. But i often mix words up or trail off mid-sentence)

I have started the obvious steps. I have had a few appts with my doctor. I am now waiting on a Rheumatologist appt at the end of the month. My last Drs appt with my PCP was on August 13th.

At my first appt concerning joint pain I was given a wide spectrum of blood tests. Mostly everything came up negative, including the ELISA test. One thing that did pop up was a high Rheumatoid Factor. (43 IU/Ml) I should mention that an ANA test and SED Rate test and CRP were all performed and found to be normal)

On my second appt, my Dr and I had a lot more time to talk and get into the details. He said he suspected Lyme. He said the testing was "a crap shoot" and decided to order the WB test despite the negative ELISA test. Ran a whole bunch more tests and we went ahead with scheduling the rheumatologist referral. I should also mention that i ended up getting Shingles. Again. In August. So, that's twice within 7 months.

Results from the WB came up with one reactive band. Band 93. My Dr said i need to have the 5 IGG bands to be diagnosed, so I did not receive any antibiotics and on the PCP front, I feel abandoned. Rheumatologists appt feels like my next glimmer of hope.

Not feeling content with waiting that long, I did some digging and found that band 93 seems to be Lyme specific. I also learned that there were scientific studies linking Late stage Lyme with high Rheumatoid factor. My symptoms don't really fit neatly in any autoimmune boxes, as something always seems to not quite fit with any one of them, but they all seem to fall under the Lyme umbrella. Combine that with the fact that I find multiple ticks on me every single year due to where I live, and it seems like it's the most likely suspect.

I started an experiment. The Ross protocol. I take my Cat's Claw and Banderol (Otoba bark) tinctures every day, along with teasel. I also do take the detox supplements. I have found that after being on this protocol for a while now, my joint pain has considerably (like a lot!) lessened, but other things have started. I now get low-grade fevers almost every single day by midday, and my fatigue has gotten pretty intense some days. A lot worse. I can't help but wonder if this is just a natural progression of whatever I am going through, or if this is a result of the herbs working and my fevers and fatigue are a result of my body actively fighting an infection that it was once oblivious to.

I know that no one here can give me a diagnosis. But i do wonder if any of you have had experience where taking your herbs has activated your immune system enough to show up positive on a follow-up Lyme test. I'm in a weird space where I want to bring my suspicions up to my rheumatologist and see if I can get myself another test, but I also really don't want to be seen as someone who just desperately WANTS to have lyme disease.

I look forward to hearing your stories that might relate to mine. Thanks so much for your time!

Thanks for giving your experience. How did you do/ are doing on herbs? I hope you're faring well.

It's true that Lyme testing is notoriously unreliable, and as a lurker here you probably already know that. If your immune system is dysfunctional (like allowing you to get shingles twice at age 38) then you might not be producing the antibodies that a lot of tests look for, so it's important to get evaluated by an LLMD, as they are the only doctors qualified to diagnose and treat Lyme.

I live in Western Mass and lived in Boston for a long time, so I might have some doctor and provider suggestions, if you need them. Email me (address is in my profile) if you would like!

If you are having electric shock-type pains, then I would consider Bartonella and mold toxicity. The symptoms of those two can be indistinguishable from each other, and both overlap a great deal with Lyme symptoms. Any chance you have been exposed to mold, from a basement or water-damaged building, perhaps? Just another idea for you.

Welcome to the forum! I hope that you find the answers you need and some relief very soon!

WalkingbyFaith said...
That’s interesting, skinny joe. I wish that were the case for me. I treated with herbs, but it hasn’t increased the positive bands I get on the WB. That said, I never did much cat’s claw. Only really Japanese knotweed for the Lyme.

Critter, try adding some houttuynia tincture for bartonella. Swollen nodes, afternoon fevers, and tendon pain suggest bartonella. Japanese knotweed is very good and a core herb for both Lyme and bartonella.

A rheumatologist might have some clarity on the RF result, but don’t be shocked if they aren’t helpful regarding Lyme. Your next doctor should be an LLMD.

I think i figured out the appropriate way to respond to a specific post. Lol whoops to the two other responses I've made!

Thanks for the tips. I'll definitely consider this if things stay the same for me. It's been a ride for sure.