Positive ANA and lyme?

Hi! Its been a while since i have posted here. I have been having symptoms for almost two years. And it took me that long to find a doctor who took me seriously. Anyway Igenex came back IgM positive for lyme. I did not test for co infections yet. So for two years i have been getting bloodwork done and everything has always been normal until recently i tested positive for ANA 1:180 in November. I went to a rheumatologist because i wanted to make sure I'm dealing with lyme and not an autoimmune disease. She said it’s common to have a high ANA with lyme disease. So she ran more tests and everything was negative but now my ANA went up to 1:640. I see her in late January to discuss this but wanted to get others input here while i wait for my appointment. Any information is greatly appreciated.

Thank you!

positive ANA is very common in lyme disease and co-infections.

it generally used as a broad marker for auto-immune disease - and when positive the doctors will usually then order a titre - which they have already done - and this showed high levels of activity ( sample still reactive when diluted 640x) again not uncommon in lyme. My own levels have been pretty high at times.

the next step is usually to run a panel of more specific auto-immunity antibody tests for a number of named auto-immune diseases to see if any of those are positive that would allow them to make a more precise diagnosis - some of which have implications for treatment approach. but most Lyme patients appear to have some auto-immune / auto-inflammatory component in their overall health condition due to intracellular microorganisms triggering and dysregulating the immune system.

however, you should be aware that there are different schools of thought on how to go forward from here - and these different schools of thought may be diametrically opposed depending on what country you are in and the landscape of the medical establishments regulatory bodies there.

in most conventional western medicine institutions - positive ANA tests are performed as screening and you will then be referred to rheumatology. most rheumatologists believe we do not know ( and cannot know ) the root cause of rheumatic diseases and their discipline is therefore focussed on categorising the type of auto-immunity and reducing symptoms. often with immune suppressing drugs. They may offer to treat for a limited time with one antibiotic - like doxycycline - but are typically resistant to the use of comprehensive long term antibiotic treatment strategies - due to their education and doctrine being at odds with it.
Note that in many countries they may even be disciplined by medical boards for treating outside of the established medical guidelines - or at the very least place themselves and their careers at personal risk by having to justify their actions.

on the other hand lyme literate medical doctors would clearly identify anyone with high ANA titres, lyme symptoms and a positive lyme tests and as having rheumatological symptoms secondary to a chronic infection and would seek to treat that infection with typically 2-3 or more antibiotics in combination - along with a comprehensive overall program to stabilise the condition and manage the Herxheimer reactions ( worsening of existing symptoms and occurrence of new ones as inflammatory reactions occur due to killing of microbes in chronic infections )that are likely along the way.

from the accounts from members here and from many many scientific papers on the subject - one antibiotic is rarely sufficient to treat chronic Lyme disease and may even make it harder to treat in the long run. For this reason its better to see a LLMD from the onset to get appropriate treatment.

people here can help you connect with a LLMD in your area - or at least accessible from your area via telemedicine - some LLMD's are also open to working in consultation with your MD.

if you start a thread with "help me find a LLMD in ......" you should get some suggestions

some people myself included do self treat - but this is a very long journey and a very large undertaking in self education and trial and error and very demanding in terms of time investment and the mental fortitude and disciplines required to be your own MD.

Although it may seem an attractive option at the beginning - i would not advise it as the default choice for the above reasons.

JessieP said...

Hi Garzie!- thank you for all that information. The rheumatologist did run all the other follow up bloodwork and everything was negative. /quote]

that's pretty common in Lyme - i have the same - but good news in as much no overt identifiable auto-immune illness is detectable.

i would not let concerns that you might not find the ideal LLMD put you off from trying - more just take steps to identify the better ones - eg from input here - or there are often local Lyme patient support organisations in your country who can guide you - some even have unofficial patient reviews of LLMD's to help people find ones they can feel confident with. i would take input from others who have been to see them - rather than chose blind.

in the mean time there is also quite a lot you can do to help your body fight the disease and improve your quality of life:
- diet can be especially helpful, in particular removing low value or harmful foods ( processed foods, sugar, industrial fats) and replacing them with health promoting ones like fresh vegetables - and many people find Paleo, AIP or ketogenic diets especially helpful while recovering from lyme. I personally made no progress until i changed to a wholefoods ketogenic diet

- 8hrs of good quality sleep is tremendously powerful in improving your bodies ability to heal - if you are not getting that now - what can you do to improve it

- stress management of some form is normally necessary also - as with lyme our response to stress is dysregulated and serves to make us sicker

- exercise of some form is normally necessary to recover - this may need to be very little to begin with but even with Lyme it is often possible to build up over time.

these things together can help as much as the right antibiotics - or rather all the antibiotics in the word will often fail if the above are all working against you.

as you can see its a rather comprehensive commitment to getting well - but that is what most people find is necessary

my suggestion would be to take positive action now and not wait because of the "what ifs"