New to Lyme- plaquenil anyone?

Hello there.
I was diagnosed with Lyme about a month ago after beginning to have eye issues and neurological issues back in June of 19. Many doctors, a diagnosis of Sjögren syndrome with high ANA I became frustrated as I knew I didn’t have the typical extreme dry eye or mouth. No one would listen. I went to another rhumey that said he didn’t see Sjorgen, gave no other explanation or test, but kept talking about MS. I had an MRI that ruled that out in August.

I finally found a new PCP that had a partner with Lyme. Low and behold I didn’t meet “cdc standards” but had bands 93, 34 among others on the IGG and band 39 and 41 on the IGM. I was told 93,34,39 are Lyme specific and even if it was low number it would be like saying “you’re kinda pregnant” that it comes from Lyme. I should add my 4 year old daughter also tested positive but her numbers are in the high 200s and is CDC positive. That has led to a whole other amount of grief and guilt. 😕

Anyways, during the sjorgen syndrome diagnosis I was put on plaquenil and began feeling worse within a week. They took me off and gave me steroids. Which of course my inflammation went down, but I had body twitches, developed more pain, and my chest issues began. After finding out about my LLMD put me back on plaquenil with antibiotics. He also gave me an antiviral as I had mono twice growing up and he believed it reactivated due to some numbness I was having off and on in my face. He said I was likely worse because of the “herx” and the plaquenil was doing it’s job when I first started. I’m back in the same boat.

Does anyone have awful pain in their feet (arches and top below toes), and fingers? My fingers are absolutely killing me and swelling/stuffing more than before. especially in the middle of the night/when I first wake up. My chest has also been a mess with pain particularly on the right side. Some days it feels like it’s my throat other days it feels down in my breast bone. I had two bowel movements that were strange. One came with what I can describe as a huge white “cloud” and the other came with small whitish things with brown string-like things attached.

Anyone have any “herx” like this or been prescribe Plaquenil? I just want to feel better and feel like I’ve been worse. Psychologically I tell myself I know it’s going to bye bad before better, but other days I want to quit and can’t wrap my head around this.

I appreciate anyone’s feedback or guidance through this.

Welcome to the forum clclarky

One hallmark symptom of the lyme coinfection Bartonella is foot pain.

I had it but it resolved with treatment.

Fibromyalgia is a common misdiagnosis - all it means is you have unexplained sore muscles.

Are you getting eye tests while on the Plaquenil? If not - please look into it.
The steroids could have contributed to your worsening of symptoms.

Does your LLMD only have you on Plaquenil for lyme trestment?

clclarky said...
Thanks for your input.

Is it possible to have a co-infection not show up on the test? Mine didn’t show it, but I also wasn’t “cdc positive” not sure how all that works.

Yes, my LLMD put me on the plaquenil for the Lyme. His words were “you can give the rheumatologist the middle finger.” It wasn’t until after he said plaquenil that I spoke up I was on it before and then explained his thoughts on why it made me feel bad.

I got my eyes tested before plaquenil back in June (my eyes it what started me on this path of supposedly sjorgen’s to Lyme) and go to a new eye dr next week that specializes in Lyme.

Re: testing - Many many false negatives - when testing coinfections.
The coinfections would be separate tests -
My first LLND and my present LLMD didn’t ask for the coinfections to be tested.
My current LLMD treats all patients for all three B’s (Babesia, borrelia, Bartonella)

Are you just on Plaquenil?
Any future plans for other meds - ie antibiotics ?

Your eye test - should be checking the optic nerve while on Plaquenil - Your eye doc will know that.

Even with negative coinfection testing, llmd’s will look at your symptoms and clinically diagnose the coinfections to be treated as well... or just go ahead and treat lyme, bart and Babesia.

Thank you both!
Is skin itching/burning a thing? Most days I’m fine, but other days my skin feels like it’s burning or like today I have itches all over. The burning isn’t the “normal” neuropathy burn I have had before.

orbitingaround said...
The pain you describe in your feet and hands sounds like Bartonella, I have similar pain. Testing for co-infections is really inaccurate so your LLMD should just go ahead and treat it.

Yes! I forgot to mention the feet and hands - my feet were sore prior to Bartonella treatment.

Bumping hoping for participation

Thanks for sharing your experience- did the neuropathy ever subside? I am doing so much worse ever since LDN + plaquenil was added to mix. I have been in intense pain and worsening every day for the last 3 months. Getting to the end of my rope here.

Taking buhner herbs (CSA tincture, knotweed, red sage, guo tang, cats claw, propolis, and black walnut hills) and antibiotics ( Rifabutin/Rifampin cycling, Bicillin, doxycycline, and diflucan)

I suspect antibiotics resistant Bartonella and babesia are tag teaming me to death.

My body has tolerated everything except for plaquinell. My doctor was using it to stir up the bartonella and then kill it with abx.

For me it shows up in my arms and becomes very painful and this time even one part of my arm is swollen. I've obviously stopped taking it for now.

It is odd because my previous doctor tried using it for babesia and I couldn't really find much on it being able to stir up the bartonella (aside from my current doctor)

Anyway, something to think about as I've never really herxed much from any treatment minus the plaquinell for some reason.

I took plaquenil once and the herx were so strong I can never get back on. My LLMD is against steroids because it lowers the immune system.Try NAC its a game changer for inflammation