Results and next steps

cbp310 said...
ID doctor says "you don't have Lyme" likely due to CDC definition. How would you interpret these Western Blot results (only 18 IGG reactive)? Has anyone tested similarly and used a protocol that helped them eliminate achiness and leg soreness? My main (and possibly only) symptoms include muscle/joint pain in the groins and calves.

I treated a bullseye rash near immediately with 28 days of doxy. Have been on a Japanese knotweed and cat's claw supplement in addition to starting lumbrokinase / 10 more days of doxy.

LYME DISEASE AB(IGG,M),WB (8593)

F LYME DISEASE AB(IGG),BLOT NEGATIVE NEGATIVE Z99
F 18 KD (IGG) BAND REACTIVE A Z99
F 23 KD (IGG) BAND NON-REACTIVE Z99
F 28 KD (IGG) BAND NON-REACTIVE Z99
F 30 KD (IGG) BAND NON-REACTIVE Z99
F 39 KD (IGG) BAND NON-REACTIVE Z99
F 41 KD (IGG) BAND NON-REACTIVE Z99
F 45 KD (IGG) BAND NON-REACTIVE Z99
F 58 KD (IGG) BAND NON-REACTIVE Z99
F 66 KD (IGG) BAND NON-REACTIVE Z99
F 93 KD (IGG) BAND NON-REACTIVE Z99
F LYME DISEASE AB(IGM),BLOT NEGATIVE NEGATIVE Z99
F 23 KD (IGM) BAND NON-REACTIVE Z99
F 39 KD (IGM) BAND NON-REACTIVE Z99
F 41 KD (IGM) BAND NON-REACTIVE Z9

What lab are these results from?

You had a known tick bite and a bullseye rash AND subsequent symptoms

You have Lyme disease.

My advice - go to a Lyme literate dr for treatment.

cbp310 said...
The results are from a Western blot blood test.

I did not physically see a tick but I did have a bullseye rash, though I'm in the PNW which is surprising in its own right.

Bullseye rash = Lyme disease.

What is “PNW”

Hello and Welcome
bulls eye rash is diagnostic of Lyme disease on its own

no doctor should exclude lyme disease based on serologic testing alone - to my knowledge all conventional medical systems around the world acknowledge that testing is not suitably sensitive to make this a safe decision for patients. most guidance for MDs states this explicitly. Though its very common for doctors to do exactly the opposite.

this site has official data on case incidences ( official reported cases ) for Lyme disease - and shows that while it is less common in the PNW than in some states it is still present in significant number of cases.
these are official reported cases - meeting surveillance criteria etc.
https://lymediseaseassociation.org/cases-stats-maps-graphs/

the CDC recognises that while reported cases for the whole of the USA are in the region of 30,000 cases per year, the officially estimated actual number of cases is now over 450,000 cases per year - so a factor of 15x higher - and these are still thought to be conservative estimates by many in the field.

in short - many of the "old Lyme knowledge" - like the common "we don't have that round here" - is now either out of date or simply found to be wrong all along.

unfortunately a large percentage of patients with bulls eye rash - have relapses or continued symptoms after 30 days of doxycycline - studies vary in the proportion they report from 10% to 60% - but if you took the mid point of 35% that's more than a third of people go on to have continued illness after 30 days of Doxy

you do not say how long ago the bulls eye rash was - if it was only a few weeks it would likely be worth continuing doxycycline for some weeks after symptoms resolve as the disease is much easier to treat if caught early

either way the advice to find a LLMD is for suitable treatment is good advice.

in the meantime there is a great deal of useful information from very experienced and knowledgeable patients here on the forum - in the first post and in the substantial archives of other discussions.

edited to add a link to the Lyme incidence maps for USA

Post Edited (Garzie) : 9/8/2022 9:16:50 AM (GMT-7)