Another I think I’ve got Lyme post…

Hi Folks…

Hope I’m in the right place. Im gonna ask if my story resonates with anyone here.

So, in Aug 22 we had a family trip to Portugal where my wife was bitten. We didn’t know this at the time but in sept she developed the classic red ring and was urgently put on antibiotics. (Lyme disease is very rare where I live). Around a month later I suddenly got ‘sick’ it wasn’t a typical sickness, I was weak, strange feeling in my legs that became pins and needs/numbness + lots of weird sensations, sore head etc.

At that time I went to the doc, who suspected ms. I was give a spine and head mri. It was clear. Then after a number of months and additional symptoms like cold patches and tremors, muscle twitching started.

In the interim period I returned to my GP to ask if it’s possible that I had contracted Lyme. I was told this was not likely and my symptoms didn’t match Lyme.

I asked for the blood test to be done anyway.

They were returned and had a positive for IgM to Borrelia OspC antigen, borrelia V1Sel/pepC10 EIA, Borrelia burgdorferi but negative for IgG.

My GP told me this was a negative test as the timeframe didn’t match.

I was referred to a neurologist who tested me for everything. Had an EMG. Everything was clear.

I’ve since developed swelling in my knee, it’s not really severe but it’s enough to leave a dent/hole in my kneecap when I kneel down.

I just wanna know if anyone else with confirmed Lyme had any of my symptoms? I’ve been told time and time again that my symptoms don’t match Lyme and that I wouldn’t be able to function if it was Lyme.

If anyone could share their thoughts I’d really appreciate it.

Thanks for you reply! My main concern around this whole thing is the IgG vs IgM antibodies.

CDC states on its website that a positive IgM test should be ignored if the symptoms have been persistent for over 30 days - which they definitely were at the point I took the test.

I’ve been getting treatment from a kinesiologist for that 3 months in the form of herbs, she suspects I have all 3 b’s unfortunately. I haven’t seen anything in the form of progress tbh but I know it can take some time.

On a positive note I was taking a short 2 week course of antibiotics for an unrelated reason and after the first week noticed an improvement in joint pain, this came back rather quickly after I completely the course, but it give me hope.

Thanks again for your thoughtful post.

Thanks Fergleman, yes I’m in Europe but I don’t use Facebook anymore. Although a support group could convince me to return.

Thanks for the information, I’ll definitely watch under our skin.

One thing you said sticks with me. ‘If it is indeed lyme…’

This is kinda the issue, how do I know it’s Lyme?

Thanks RainyCloud,

Might I ask if you’re healed? How you got better?

Hello Scott
sorry to hear you are dealing with this - but welcome to our little community

you have had some good input already

i would just add that while its natural to want certainty - and reasonable to question any diagnosis - the actual current situation with testing for lyme disease ( and many of the co-infections) is that complete certainty is often not possible

most of us had the naïve expectation on arriving in this situation that there must be a simple black and white test that could tell us if we have this infection or not - after all such test exist for many infectious diseases
eg AIDS, Hepatitis etc etc - and those tests are so near perfect ( 99% sensitive and 99% specific ) that they can be viewed as black and white - you either have it or you don't

the issue is that for Lyme disease is that no technology currently exists that is 100% or even 99% sensitive and 99% specific.
the western blot / immuno blot test, that you had, is considered more like 20-50% sensitive - depending on which study your read. ( manufacturers often claim higher accuracy - but they have a vested interest in doing so - and when independent researchers evaluate their tests - they tend to get the 20% to 50% number).

and it important to understand that these numbers are averages - so an individual person can light up all the bands and get a thoroughly positive result - but the next person may be infected and show one or two bands bands or none at all. it is not a direct test - it tests what the immune system is doing - which is highly variable from individual to individual and subject to disruption by many things.

in addition, courses of antibiotics especially relatively early in the infection are also known to interfere with the expected antibody's produced by the host and such persons may never present the expected antibodies - even if infected and symptomatic.

there are companies developing better tests - but the entire area is underfunded and very difficult to navigate due to the misinformation or out of date information promoted by many national governments.
The motivations for this rift in the medical community are often murky - probably some combination of dogma, reputations on the line and vested interests.

regarding what doctors have told you
almost everyone here has been told the same kind of blatant untruths you have by either primary care doctors or even infectious disease doctors who should be better informed
" we don't have that here / there"
" if you had that you would be much more ill "
" if you had that then your inflammation markers would be through the roof - so you cant have that"
" the test was negative - so you cannot have that " when in fact it every guideline ever written states that a negative test SHOULD NOT be used to exclude a lyme diagnosis

in fact i was told all of the above by either my GP or an infectious disease doctor i asked to be referred to

i later found they only get taught about half a page about Lyme disease at medical school - and pretty much all of that is untrue / out of date

due to the less than reliable tests many / most LLMD's diagnose based on things like
-symptoms picture
-history
-exposure risk
-response to treatment

in your case the fact that:
1, you know your wife was exposed ( definitively due to bulls eye rash - which is diagnostic on its own) means that you have an increased risk of exposure to the same ticks
2, the symptoms you describe are a good match to lyme disease - in particular the sudden swelling of one knee - and the strange sensations of pins and needles, tingling or cold patches and tremors - indicating neuropathies are VERY TYPICAL of lyme disease
3, MS is one of the most common misdiagnosis given to lyme patients - due to the unfamiliarity of most doctors with lyme disease and the large number of symptoms that overlap - and in your case MS seems to have been ruled out by MRI etc - but no other diagnosis offered

finally there is not many studies on the topic - so it is controversial - but there is accumulating evidence that lyme disease may be spread from person to person by sexual contact. i must emphasis that this is not proven established science yet - but there are some strong pointers in that direction.
for instance - in a small study of couples with lyme - the exact same genetic strain was found in both partners - something that is unlikely to happen by exposure to ticks in the wild which will typically carry many different strains. borrelia have also been found in the genital tissues and excretions of humans - and the related spirochete - syphilis is certainly sexually transmitted.
if it happens its certainly no ones fault - given how little is known about it

i hope the above is of some help

feel free to ask more questions - there is a helpful and knowledgeable bunch of people here

I’ve had all of the symptoms you mentioned.

You would think that Infectious Disease doctors are specialist in Lyme but unfortunately many are not. So if that doctor is dismissive about Lyme then don’t let that deter you from seeking a formal Lyme disease diagnosis and treatment with a Lyme literate medical doctor.

I’m in the UK and so is Garzie. There are people we can recommend if you don’t have any luck with the infectious disease doctor in London. Best of luck with your appointment and against the odds, I do hope it goes well! I like to believe that times are changing re Lyme and the medical establishment

Scott1764 said...
Thanks for you reply! My main concern around this whole thing is the IgG vs IgM antibodies.

CDC states on its website that a positive IgM test should be ignored if the symptoms have been persistent for over 30 days - which they definitely were at the point I took the test.

My LLMD says IGM can be a new infection OR an older infection that hasn’t been treated.

Thanks so much everyone for your valuable insights.

Garzie, I will temper my expectations, I spoken to a lot of doctors and there is definitely a lack of understanding of Lyme. I guess the difficulty is when the cdc says X is very easy for a doctor to rely on that for safety.

I’m currently writing up some notes so I have everything in the correct timeline. I have the appointment (first one is via video call) on Monday.

I’ll let you all know how it goes.

In the meantime, thanks so much for your time and generous words.

All good comments. Going back to Garzie's thoughts and putting it simply, too much between your wife and your symptoms to simply be chance. Too many clues. If Vegas was putting odds on it, I have to believe the money would be on Lyme.

That's not guaranteeing it is, but so much leads to that being the best bet.

Garzie said...
all the best

keep us posted

Appreciate it, thanks Garzie

Post Edited (Scott1764) : 8/11/2024 11:52:04 PM (GMT-8)

in case its of any help - this is the study on same strains of borrelia found in couples with lyme

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5482345/

note that there was push back from some in the medical community questioning their work - and that the authors then presented additional evidence and data to address the reviewers points raised.

i.e. an open and professional response to criticism providing further data to support their findings - exactly as you would hope to have when findings are questioned.

that sounds very encouraging

no argument over diagnosis - or at least likelihood of lyme
acknowledgement that chronic lyme exists - and further treatment may be needed

so it seems like a decent start

yes, "die off"/ Herxheimer reactions are very common

first characterised in other spirochaetal infections - and known to occur in lyme disease and co-infections

they are typically a worsening of existing symptoms and the occurrence of new symptoms in response to antimicrobial treatments.

in the original literature they tended to be extreme but very short lived - less than 24hrs - but in the lyme community they are typically not life threatening - but longer lasting - up to a couple of weeks after taking antibiotics.

when i first took doxy i felt overall noticeably worse for 4-6 weeks and then as i continued to take it i started to feel better than when i started - but i had gone undiagnosed/ misdiagnosed for 5 years

all the best for your treatment and keep us posted on how you get on

For the sake of your esophagus, and your head, don't lie down for at least an hour after taking doxycycline. It increases intracranial blood pressure and it can affect your esophagus too and cause horrible heartburn and make you feel rotten to boot as it messes with your stomach.

Make sure to detox. Not orange juice as orange juice is full of sugar which can feed lyme. Drink enough water, if you have vitamin C supplements like Berocca that can help you feel a bit better.

Ocra powder helps to bind the toxins so your body can excrete them, otherwise, they get recycled into the body through the bile. Other things you can get to help are things like Milk thistle - which helps the liver clear stuff and increases Glutathione production. There are 2 phases of liver detox and milk thistle helps in the production of Gluathione which is used to get rid of the bad stuff.