HealingWell
Search Close Search
☰

Lyme or doxycycline lowering WBC? Different WB results at different labs?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/3/2016 5:08 PM (GMT 0)
Hi Wise ones,

I'm desperately trying to figure out whether I have Lyme or lupus or what. I was diagnosed with POTS in 3/15. Lyme in 6/15, started Lyme treatment with LLMD in 9/15. I started with just doxycycline. Added plaquenil in 1/16 because I had read that people with POTS and Lyme did well on it. Stopped the plaquenil on 2/15 due to stomach issues and weight loss and started Ceftin. Currently taking full doses of doxy and Ceftin. Yes, I detox like crazy.

Back story: I was on doxy for 10 years for rosacea until 9/14 when I stopped after getting a stomach flu. My tick exposure was high during those years, I lived in an endemic area. I thought, and so do most mainstream Drs, that I couldn't get Lyme since I was on the doxy.

My WBC was fine until a month or so «before» I re-started doxy when it was lower but still in the range. After re-starting the doxy (9/15) my WBC tanked, big time. It was low until about a month on the plaquenil (I know this does raise WBC). I know Lyme and doxy can both lower WBC, mine correlates well with re-starting the doxy, should I be concerned and stop the doxy? What other drugs would hit the Lyme (I'm allergic to penicillin)? I know you can't give medical advice and will be speaking with my LLMD next week, I just really want info/opinions.

At the same time of the blood test showing improved WBC I had a positive ANA with Smith antibodies so off to the rheumatologist. I have bilateral joint pain in my fingers and knees. The rheumatologist thinks I am starting to develop lupus or on that spectrum. My mom has four autoimmune diseases and my genetic tests show I am at high risk so it isn't a stretch. He suggested stopping the antibiotics and going back on plaquenil. I did feel better on that. He also re-ran the WB with a different lab than Igenex. Igenex showed +++ for band 39 in 6/15. This lab showed positive on band 23 and nothing else. How can this be? I'm so very confused. Any and all input welcome.

Thank you.

LL
Posted 3/3/2016 5:36 PM (GMT 0)
I'm a bit confused with some things, maybe you could clarify. You said: "I know Lyme and doxy can both lower WBC, mine correlates well with re-starting the doxy..."

But earlier in that paragraph you said: "My WBC was fine until a month or so «before» I re-started doxy "

Now, I'm herxing slightly and it is hitting my brain some, so maybe I'm just not seeing the obvious, but...

As far as having Lupus, some people with Lyme do develop lupus (or other auto-immune conditions) but many have those conditions clear up when their Lyme heals. I developed psoriasis (2 types) and they stay cleared up as long as I take good care of myself and don't get reinfected (which I managed to do).

Many people with Lyme have a high ANA test result, so I would encourage you to not stop your Lyme treatments too soon. Even if healing your Lyme doesn't clear up the Lupus, Lyme will most certainly make it worse.

As for the testing, it depends on what lab your doctor used. The difference between local labs such as Lapcorp and IgeneX is this:

Local labs make there lyme probes using rabbit antigens from 2 strains of Lyme.

IgeneX uses samples from human lyme patients from all over the United States and Europe and from patients who had early, middle and late stage lyme.

Also, when a western blot is done there is an acidic gel that is used to separate out the bands. Most labs use a 10% gel. IgeneX uses a 12.5% gel so they get better separation of the bands.

Not only that, but we don't recommend retesting because it's all about how the immune function is. Different results should be expected on different days, much more so several months apart. Even though a person isn't healed from Lyme, they can still have a negative test result, especially if they are using a lab that doesn't specialize in testing for these infections.
Posted 3/3/2016 7:14 PM (GMT 0)
Thanks, Traveler, another great set of explanations.

Sorry to be confusing. The WBC was lower in the month before I re-started doxy but was still within the range. Shortly after re-starting doxy it bottomed out 2.1 (I think) and stayed there until I had been on the plaquenil for several weeks. I'm frightened with it so low of catching things.

Is it common for Lyme to affect the finger joints? I know that is more common with lupus.

I was surprised the rheumatologist did the WB. He didn't tell me he was going to do it.

Thanks again.
Posted 3/3/2016 7:16 PM (GMT 0)
One last question. Is it possible to get Lyme while on doxy?
Posted 3/3/2016 7:31 PM (GMT 0)
Lyme has managed to mess with every single thing in my body. Once the Lyme arthritis set in, not even my joints were safe. Now I have one finger joint that osteoarthritis just loves - it's red and swollen (and painful!) now! Dumb fingers! LOL!

I've startled several doctors with my white and red blood cell counts dropping considerably, and that's without being in treatment, so I know it wasn't due to any meds I was taking to treat Lyme and company.

Now, I'm not saying that Doxy won't do the same, but only that Lyme could most certainly be the cause. You could always switch to another abx that treats Lyme, like Augmentin, or go to herbs to treat these infections. Minocycline is also a really good abx for Lyme -that was the only pharma abx that I've had for these infections, actually.

And don't think a thing about your WB being different. If it was the exact same, that would be something to write about to be honest.
Posted 3/3/2016 7:33 PM (GMT 0)
I have sore/stiff finger joints - and it started several months after I started treating with antibiotics.
It is much improved now....I used to wake in the middle of the night and my hands were clenched...- stiff and painful....would straighten my fingers and go back to sleep.

During treatment, my wbc count lowered until it was in the "2's" - I was worried - went to my Dr. (not LL Dr. - my regular GP) and asked her jokingly (sort of) if I needed to wear a mask. And she said 'no' - that we'd just keep an eye on it and it's serious when it drops below "1".

She said people in cancer treatment - their wbc often drops lower than "2".
My wbc count is now just under 4.

Regarding getting lyme while on doxy...what dose of doxy were you on?
Posted 3/3/2016 7:35 PM (GMT 0)
I re -read your first post - you said you stopped doxy in 9/14 - and you were in an endemic area - maybe you got it then?
Posted 3/3/2016 8:08 PM (GMT 0)
It's ossible but unlikely that I contracted Lyme after I stopped the doxy. I don't think I went out there (vacation house) until after hard frosts sometime in November of '14. Having said that I found engorged ticks on my dogs after they were out there last fall but this is a crazy mild winter.

I can't switch to minocycline because I was on that for a few years for the rosacea and the cartilage in my ears turned blue! The dermatologist called me a surf lol! If there's a rare side effect to a drug I get it.

Girlie, I find it comforting that you developed finger issues several months into treatment and I am relieved you are now better. That gives me hope. Thanks. I see my PCP Monday and will ask about the WBC. The thought of catching something else is frightening.

I was on minocycline for a few of those 10 years (I had forgotten) 100mg (I think) twice a day. Doxy was 100mg twice a day which is my current dose. I only weigh around 95-100 pounds so I suspect the dose is sufficient?

I'm thinking the herb path may be my best choice. I'll discuss that with the LLMD next week.

Thank you so much.
Posted 3/3/2016 8:39 PM (GMT 0)
I was given a rosacea diagnosis but now in hindsight I know it was some sort of lyme manifestation. I was likely bit in 2009, was diagnosed with rosacea in 2011. Went on minocycline and it cleared up. I have had no flare ups since then. My major lyme symptoms came out in 2015.

Do you still have rosacea? Maybe it's possible you got lyme prior to that and you kept in check for 10 years with the doxy? Just a thought.
Posted 3/3/2016 9:16 PM (GMT 0)
K07. Interesting hypothesis. It's certainly possible. The LLMD thinks the doxy was keeping the Lyme in check until I suffered two serious viral infections within 5 days which knocked my immune system out. At the same time I stopped the doxy due to the stomach virus, I just couldn't keep it down and never started it again. That allowed the Lyme to go nuts. Unless I never had Lyme because the doxy worked as a prophylactic.

I don't know if I still have the rosacea. I'm sensitive to sunlight but is that lupus, Lyme, rosacea or doxy? I can't see it, it's very faint, no pimples etc. I never could see but two different dermatologists did.
✚ New Topic ✚ Reply