Please help! Should I get started on lyme treatment?

Hi!
I feel lost with my illness and I want to hear what others think. Please reply!

I tested positive for only Igm (41, 39, 23) part of western blot lyme test not Igg (no bands present). Lyme Igg/Igm by Elisa Pos(2.08). Lyme C6 peptide by Elisa Neg(0.11). My test was done through Medical Diagonostics Labratories in NJ.

I also tested weakly positive for ANA(1:80) and C3 C4 complements are low. No other antibodies are pos for lupus or RA..

MRI Scans of brain and spine are clear.

For past three months, my symptoms are mainly:
neuropathic pains all over my body
severe back pain that runs down both of my legs.
Butterfly rash.
Weak/painful muscles of both arms and legs.
Stiff neck that comes with foggy brain.
Joint and bone pains that come and go.
Ribcage pain.
Low grade fever before menstrual cycle.

I'm seeing multiple doctors at the same time. My neurologist and internal med doc, they think I have autoimmune disease and lyme disease is very unlikely. My naturopathic doctor is the only one that thinks I have late lyme disease triggered by steroid use (I was on prednisone for med allergy). I asked him the possibility of false-positive because I've been sick for long time and only Igm part is pos. But my doc thinks it isn't false-positive at all and told me to try doxycycline for 3 weeks to see results.

Right now, I'm not on any meds except for some natural supplements. I doubt that I have lyme... I've never been bit by a tick and heard of anyone that has lyme (I live in Vancouver, BC).

I'm debating with myself whether to take doxycycline prescribed by naturopathic doc. I'm sensitive to meds and I'm worried how my body will react to abx.

Should I go ahead with trial of doxycycline (100mg twice a day)?
Also does anyone have butterfly rash on face with lyme disease?
Any comments will be very helpful!!

Interpreting WB has always been a bit tricky but I think this image which sums up Dr Horowitz's take is helpful and accurate for interpreting WB results and exposure to the lyme pathogen: VIEW IMAGE

Ticks can be very tiny, especially the nymphs, and inoculation doesn't always present with a rash either. Many people who have lyme don't remember an original tick bite. Your multi-system symptoms are certainly very typical for lyme/tbd patient.

I think starting the antimicrobials is not a bad idea, but if you are hesitant I think it is good to keep doing research to better understand your situation and options and potential strategies for treatment. Hopefully you can get some helpful input from this forum and some of its members.

And if you start antimicrobial treatments I would start low and slow especially if you are sensitive to meds there is a good chance you will flare (herx). There are various strategies to help control for this like detox and also finding the right pacing to introduce and work your way into the antimicrobials.

I also wanted to add that I'm a believer in the provocation method. If you take an antimicrobial and experience a flare (herx) this is a good indication of underlying chronic infection. Not everyone flares but it is common enough and if it happens serves as extra confirmation in my book. It can be tricky to distinguish herx from allergic reaction (most doctors assume the latter as they aren't familiar with former), but if you have consistent flare across various antimicrobials then the likelihood that it is a herx response is very high (imo).

Oh and in terms of some of those markers, I had positive ANA and also positive for RA markers and I'm quite certain this was due to the infections which turbocharge inflammation and warp the immune system.

Post Edited (sebreg) : 7/11/2017 11:08:58 AM (GMT-6)

Hi Watodo, sorry to hear about your situation

but glad you have reached out here in the forum (even if you don't have lyme) many here share in their experience with Borrelia and co-infections. like you, most if not ALL of us went through lengthy diagnostic loops with multiple doctors. it took me over 15 years to figure this out, even after two doctors insisted I couldn't possibly have lyme.

here you have friends that will support you and really understand what you are going through

This being said, the key to ruling this IN or OUT is to get the Igenex lyme test, for about 210.00

worth every penny. once you have that share the results here and we can help you find an LLMD if needed.

Caramba!

Hi Watodo - welcome!

I am on Vancouver Island.

It's actually not uncommon here - Health Canada has Vancouver Island/lower mainland as endemic for Lyme disease. They just don't tell anyone.

IgM positive with IgG negative is not false positive. That is what I have.
Remember - this test is relying on our body's immune system to mount a response. Lyme and co's suppress our immune system.

PLUS - With Lyme disease, the IgM can stay positive for many months to years before seroconverting to IgG.

No - if you are IgM positive - don't do another test.

Are you seeing Dr.C in Richmond? His practice is almost all Lyme patients now...so that tells you how 'uncommon' it really is.

Hi Girlie,

Thank you for your feedback!
Yes, I'm seeing Dr.C in Richmond.
Do you know any infectious disease doc who is familiar with lyme?

"Also, he thinks my immune system was strong enough to handle lyme but with lowered immune system due to steroid use, it triggered lyme to surface.

Is this situation common in people with lyme?"

Absolutely. I've heard of this scenario happening again and again to so many patients.

And given your WB results coupled with your symptom make-up I think doing another WB is redundant.

Also from what I've read there is quite a bit of lyme in the northwest. I think there is burgdorferi plus some other strains, but it certainly exists in the Pacific northwest.

There is a lot of controversy with these diseases, so unfortunately you will likely get a lot of pushback from most medical practitioners as you navigate this thing. It is a complex story and situation and it leaves a lot of patients in the lurch, misdiagnosed, or unable to access treatments. There is a lot of victim blaming. As it stands most doctors are completely in the dark on the role of chronic infections in human health, especially the tick-borne infections and most especially lyme, there is a ton of denial. Science journalist Pam Weintraub wrote a great book on the history of lyme called Cure Unknown, def recommend it.

Post Edited (sebreg) : 7/11/2017 3:32:48 PM (GMT-6)