Is it possible to have Lyme but only a few symptoms?

Hi all, first post here after lurking for a time and learning a lot from you all!

I am trying to get to the root of almost a decade of chronic illness and am wondering whether Lyme and co could be in my picture - but in contrast to most descriptions of Lyme I see, I only have a few symptoms which don’t come and go over time. These are:

POTS (severely disabling)
MCAS
Joint pain
Fatigue
Alternating constipation/loose stool (never outright diarrhea)

In terms of other potential illness triggers:

- I’ve already been recently and successfully treated for SIBO and reactivated EBV.

- I know from looking at my stool very recently that I have some sort of helminth (worm) infestation.

- I’m currently waiting for the results of a mycotoxin test for toxic mould exposure, and am trying some anti fungal agents (undecylenic acid and S Boulardii) to see whether Candida could be in the picture.

I’d be really grateful for any views on whether this symptom profile could possibly be caused at least partially by Lyme and/or co. Thank you!

Thanks Saraeli! That’s all really useful to know. I had no idea tick-borne illness could cause just one or two major symptoms in some people that are stable over time.

I agree that mould is quite likely in my case. Praying the mycotoxin test comes back negative!!

I recently downloaded Toxic and am working my way through it - it’s excellent. I should definitely look into DNRS more thoroughly - amazing that you recovered from POTS and ME using it, I’m really pleased for you! (ME in remission for five years here and still vividly remember how god awful it was.)

Did you find DNRS useful while you were still being affected by mold/tick borne illness etc or did you need to heal from those first?

Just wanted to say “hi” and welcome you to the forum.
Garzie and saraeli have both given you good information.

Avocado_Kat said...
Thank you both for your detailed replies and “hi” back to you Girlie!

Great timing - I just got my GPL mycotox urine test results back today. 9 out of 11 values were 0, one was very low and well within the reference range (mycophenolic acid) and ochratoxin A was elevated but still within the reference range - I did follow a low-mould diet for a week prior but could be cross contamination I suppose? Unfortunately I wasn’t given a numerical value for either of those, just a bar on a chart to compare. Going to pursue home testing now as my symptoms are quite consistent with mould illness.

I’ll be looking into tick-borne illness a lot more seriously. I did have an insect bite several years ago which caused a large red lump (about 8cm diameter, definitely not a bullseye rash), but attributed this to mosquitos as they were absolutely everywhere that summer. I’m quite far north and there are no mosquito borne illnesses here as far as I’m aware, and I didn’t get flu like symptoms etc afterwards. Maybe that was a tick bite after all!

Yep, studies show bulls eye rashes occur in the minority of cases ( there is a kind of public misconception that if you don't have the rash you cant have Lyme disease - this is far from the case - its another example of a dumbing down of the complexity and nuance involved in these complex disease states)

the same studies also show most people with chronic Lyme diagnosis do not recall a tick bite either.

according to papers published by prominent LLMD's - around 50% also have gradual symptoms onset - unlike the stereotypical picture of tick bite and fever or summer flu - making it a bit easier to pin down the possible cause.
then around 50% have sudden onset
The sudden onset can be directly after tick bite - within a few days or weeks - but often its after some other event further down the line, a surgery, a virus, physical or mental trauma - eg car crash, bereavement etc - some insult to the immune system that allows the infection to take hold.

these things make it quite difficult to reason through the diagnosis - a lot of it is ruling out more obvious things

my own illness - and that of my fiancé started around 6 months after getting bitten by many large aggressive horse flies while on a picnic on farm land near where we lived - we had the usual itchy red lumps at bite sites - but no bulls eye or obvious fever afterwards - we then both became ill at the same time, with the same symptoms 6 months later.
There was some unexplained bouts of mild fatigue and a few odd symptoms coming and going in the interim - but nothing obvious.

at this time we both also had very stressful jobs - i was working 60hrs weeks in a crisis management role in a highly politicized organisation and it was grinding me down.
people think of Lyme as something that just strikes healthy people down in their prime - which it can do - but often the lifestyle factors - like stress, lack of sleep, diet, trauma etc that have weakened them and opened the door to the infection. so its not so much a model of: healthy and uninfected => then infected and sick.

i think that is an oversimplified view again - i think its more a case that the immune system was functioning and keeping pathogens at bay - then at some point it is overloaded, fails - and then we get sick.
we already know this is the case with other pathogens.

the route may not be straight forward or stereotypical - as an example - in my own case
Lyme is documented as transmitted by horse flies in a small number of cases - but its thought to be rare - so it could be that Lyme or some other pathogens was present in our case - and then bartonella or maybe Babesia was transmitted by the biting flies (far more common) and this then, combined with the Lyme, gradually overwhelmed the immune system - and we got sick some months later.
just wanted to give and example of the nuance involved in an individuals routes to chronic illness

you are doing a lot of the right things to try to rule out other causes first

i would say the mould test sounds fairly conclusive - there's not much info out there on how good these tests are - and different practitioners seem to use different pre-testing approaches - making the interpretation of results even more difficult.
but from what we see on here - most people who test tend to come up positive - above normal range - for at least a few mould toxins. so, if anything, it looks like false positives are more of an issue than false negatives.

its a daunting topic to get your head around in the beginning - but there are some knowledgeable and helpful people on here who are old hands,

so ask any questions and i am sure you will get support

Avocado_Kat said...

- I know from looking at my stool very recently that I have some sort of helminth (worm) infestation.

Hello, Avocado Kat, and welcome!!

Does it look like a scientifically classified worm, or does it look like ropeworm?

I have had ropeworm for years. Mimosa pudica seed was always the best at getting it out, but I never got rid of it. The Mimosa pudica didn’t change my symptoms for the better but caused some herxing initially. It did do a great job at getting the stuff out of me.

A little over a year ago, I decided to take Rx antiparasitics. I did 2 weeks of Ivermectin followed by 2 weeks of Alinia. I had a significant breakthrough after that with endurance, energy, and muscle fatigue. I lost some of the initial gains and decided to try Fenbendazole, which I learned about here, and is easier to get and hasn’t had any downsides that I can tell.

Interestingly, I don’t recall seeing any identifiable worms when taking the Rx drugs, but may have seen a few signs of ropeworm in the beginning. Could be because I had already done so much Mimosa pudica already.

I hope you use the ERMI test on your house. That’s the only form of mold testing that mold doctors can rely on. Air samples are not reliable. If you get the testing done, you can post the results here. A number of us have had mold issues.

Hi Avocado Kat! Welcome to the community, although I'm sorry you have need to be here.

I'm one of those that had symptoms that would come and go, as well as some fairly steady symptoms throughout my journey with these infections. I was infected for many years before I finally figured out what was going on and seeking out treatments because my symptoms were never the same, or I had few at other times. Aches and pains, and fatigue in a teen doesn't strike any doctor as odd.

"Another question that’s just occurred to me - is it possible for Lyme and co symptoms to develop from nowhere very suddenly - e.g. within 24 hours?"

Yes, as has been said above - any stressor can bring out symptoms of these infections. Sometimes it's more gradual, and sometimes it's quite sudden. And there are so many things that can be going on in the body to raise our stress levels that we don't usually think of 'stress'. Emotional stress, physical stress, or any other kind of stress all adds up. Stress lowers our immune function, so the bacteria have more of a 'free reign" in the body, and symptoms can come out strong enough for us to actually note them as problems.

Ask yourself, could my 'minor health problems' actually have been evidence of one of these infections?
This may take some time to figure out, but in many cases, we begin to realize that we have had these infections for a lot longer than we thought at first. I was shocked as I began to realize (thanks to the kindness shown to me on this forum) that I had been infected by the age of 7 - when I seemed to start getting everything that was 'going around' and if there weren't any viruses circulating, I would get pink eye, or bronchitis, or some 'fever of unknown origin'. This kind of history is actually fairly common for those of us that have had these infections for a long time.

I've been on this forum for some time (LOL), and I've talked with many people that have experienced both kinds of onset of symptoms(fast vs slow). There really isn't a "that's not normal" with these infections in many instances.

AH! and there it is! Things like interstitial cystitis is something many of us live with that have these infections! The temp dysregulation, excessive sweating, nausea, and light-headedness is all from autonomic nervous system dysfunction - which can easily be caused by these infections. Bartonella and Lyme can both infect the nervous systems - and do damage. Although I've healed from the active infections, I now live with autonomic nervous system damage that is causing a bunch of havoc in my life.

And that's not to mention that ME/CFS is a common misdiagnosis of these infections - lots of doctors I went to insisted I had ME/CFS, but I definitely had tick-borne infections instead.

And, this is a place where we all strive to just help each other, although we have been known to get goofy on here too! (I know at least I'm guilty of this!). Mostly it's a site for sharing of information, and connection between people that are living with the same diseases. We actually make a lot of friends here too!