New Lyme Question: Chronic Lyme vs. Untreated Lyme

[Chrysalis Academy]

I'm in the midst of extensive research to try and understand if, and how, a past Lyme exposure might be causing my dd's symptoms.

 

I can find information on Post Lyme Disease Syndrome - where a person is treated with antibiotics for Lyme and seems to get better, but then the symptoms return.

 

I can find information on Chronic Lyme Disease, where despite treatment symptoms persist.

 

What I'm having trouble finding is any evidence that a person can get exposed to Lyme, *not* be treated for it, be fine for 10 years, and then suddenly get sick with Lyme.

 

If it's Lyme for dd, that's the most probable scenario. Has anything like that ever happened to you or your dc?

 

Also helpful to hear about would be onset of an unexplained illness which later was determined to be Lyme (when you don't know whether the patient was ever bitten).

 

I have an appt. with a pediatric infectious diseases specialist on Sept. 8. Trying to do as much homework as possible before then. TIA.

[kewb]

I don't know that you can find any studies. I can share my husband's story. He remembers a tick when he was 13. Whether or not that was the tick is anyone's guess.

He was a healthy man until he fell apart in his 40's. However, if you look at his childhood and adulthood the symptoms were there. He had an anger problem which was chalked up to his Hungarian temper. He had periods of malaise. Brian fog, always. Weird noises in his neck. Cycles of success and periods of depression. With the benefit of hindsight it is easy to see a pattern. When living it, all unrelated incidences.

 

According to the infectious disease doctors he has post Lyme syndrome (sorry, no cure. Sucks to be you). The Lyme doc says he has Lyme and he did a year of iv antibiotics and a whole host of other meds. This brought my husband back about 75%.

[Beth S]

Just this morning, a friend was diagnosed with Babesia, which is Lyme-related. 

I know nothing more, but will throw this rare diagnosis out there.

 

[Spryte]

My story is long, but fits.

 

I was infected at 11. We have medical records describing the rash, and the illness following. It was '82, and Lyme was not on the radar.

 

I remitted and relapsed periodically for twenty years. When I was healthy, I was a field archaeologist, backpacking everywhere. I was extremely fit.

 

I crashed hard in my late, late twenties and by my early thirties had a multitude of misdiagnoses.

 

I was accidentally diagnosed in absentia by a vet, found an LLMD, and spent five years on active treatment. It was hell.

 

For the last ten years, I have continued with my LLMD, and she tweaks things as necessary. I have permanent damage from being untreated so long that will never go away, in multiple areas. Those are my souvenirs. I will never be normal, I have daily struggles. But I have found a balance. I'm happy.

 

So - 20 + years untreated here. But, anything over one year untreated is indeed considered chronic, diseminated Lyme so no need to search for the term "untreated" ... chronic will do for your purposes.

 

I will be happy to answer specific questions, that's just the outline.

[Chrysalis Academy]

Just this morning, a friend was diagnosed with Babesia, which is Lyme-related. 

I know nothing more, but will throw this rare diagnosis out there.

 

She tested negative for babesia, and she doesn't have recurring fever, so I think we can rule that one out. However, she does test positive for Mycoplasma pnuemoniae IgM, which the ped wants to ignore because she doesn't have upper respiratory symptoms. It didn't take me long to uncover the fact that Mycoplasma is a common Lyme co-infection. This was news to the ped. I insisted on an ID consult, which is coming up, as my ped seems clueless. I'm in the process of trying to find a good ped at Kaiser (recs from friends who are drs) who is taking new patients to try and get better primary care.

 

My story is long, but fits.

 

I was infected at 11. We have medical records describing the rash, and the illness following. It was '82, and Lyme was not on the radar.

 

I remitted and relapsed periodically for twenty years. When I was healthy, I was a field archaeologist, backpacking everywhere. I was extremely fit.

 

I crashed hard in my late, late twenties and by my early thirties had a multitude of misdiagnoses.

 

I was accidentally diagnosed in absentia by a vet, found an LLMD, and spent five years on active treatment. It was hell.

 

For the last ten years, I have continued with my LLMD, and she tweaks things as necessary. I have permanent damage from being untreated so long that will never go away, in multiple areas. Those are my souvenirs. I will never be normal, I have daily struggles. But I have found a balance. I'm happy.

 

So - 20 + years untreated here. But, anything over one year untreated is indeed considered chronic, diseminated Lyme so no need to search for the term "untreated" ... chronic will do for your purposes.

 

I will be happy to answer specific questions, that's just the outline.

 

Wow, diagnosed by a vet. Ironic that vets are more up on Lyme than human doctors. Also that there is a vaccine for animals but not humans . . . 

 

I'd be very interested in hearing about your treatment, whatever you are willing to share - via PM if that is more comfortable. Both the active treatment and the current long-term therapy your LLMD has recommended.

 

Yes, it seems like "Chronic Lyme" is used to cover a variety of situations, including post-treatment and untreated conditions. But when I read about MDs that don't believe in chronic Lyme, the story seems to be - if you are treated and symptoms persist or return, then it's not Lyme, it's something else.  But in my dd's case, she has never been treated. She never got sick from her known exposure (11 years ago), until 1 year ago when she suddenly did, after a short sickness with some kind of GI bug. Our first ped diagnosed her original illness (last August) as viral meningitis. Who knows, maybe she was right and that is what triggered the Lyme? It seems possible, at least.  Do you know what triggered your crash?

[Spryte]

Oh goodness, I have a lot of thoughts but not enough time at the moment.

 

I will be happy to pm lots of info.

 

But something jumped at me, just now.

 

When did the viral meningitis happen?

 

My DS had viral meningitis last summer. We dealt with it and he did not get well. It was a six week nightmare. We were at the children's hospital in DC, the ID docs could not help, I asked about Lyme et al as a matter of course and was oooh poohed since there was no tick bite recently. (He did have Lyme at 3, but he was 12 at the time). I called our LLMD. What do you know? Viral meningitis can indeed be transmitted via tick. And we all know that seeing a rash or tick is not always the norm. In my DS's case, we are fairly certain his meningitis came from a tick, as he also had contracted babesiosis.

 

So - I would not rule out a more recent exposure.

 

Though untreated Lyme could also be roaring to the surface and flourishing after a bout of immune weakening meningitis.

[Chrysalis Academy]

Wow, Spryte, holy cow.  That's a great point.  

 

I will look forward to your PM. Thank you.

[Spryte]

Wow, Spryte, holy cow. That's a great point.

 

I will look forward to your PM. Thank you.

We are recovering from a bout of the flu here, entire family, ugh, so I will reach out soon. :)

[Corraleno]

Also helpful to hear about would be onset of an unexplained illness which later was determined to be Lyme (when you don't know whether the patient was ever bitten).

 

When DS contracted Lyme, we never saw the tick and he never had a rash. It was only in retrospect — 2 yrs later — that we realized he'd been exposed during a visit to relatives in PA & NJ. A few weeks after we'd returned from that trip, he developed flu-like symptoms, but at the time we just assumed it was the flu. Other symptoms — moodiness, spaciness, sleepiness (he was sleeping 12-14 hrs/day and still tired), increased anxiety, and joint pain — were attributed to puberty and the huge growth spurt he was going through. Blood tests were normal except for low Vit D. It wasn't until his knee swelled up like a softball, nearly two years after exposure, that we started down the path that eventually led to the correct diagnosis. IgG was negative, IgM was positive. 

 

So I wouldn't assume that your DD's only exposure was at 3; it's quite possible that she was exposed more recently since many people never see a tick or develop the rash. 

 

I'm so sorry you guys are dealing with this, and I hope you can find specialists who will be open-minded and helpful. We were lucky that our pediatrician at the time was very open-minded and was willing to listen, and do some research of her own, because both the pediatric rheumatologist and the ID specialist we saw were uninformed (to put it politely) and unhelpful.

 

:grouphug:  :grouphug:  :grouphug: 

[Chrysalis Academy]

 

When DS contracted Lyme, we never saw the tick and he never had a rash. It was only in retrospect — 2 yrs later — that we realized he'd been exposed during a visit to relatives in PA & NJ. A few weeks after we'd returned from that trip, he developed flu-like symptoms, but at the time we just assumed it was the flu. Other symptoms — moodiness, spaciness, sleepiness (he was sleeping 12-14 hrs/day and still tired), increased anxiety, and joint pain — were attributed to puberty and the huge growth spurt he was going through. Blood tests were normal except for low Vit D. It wasn't until his knee swelled up like a softball, nearly two years after exposure, that we started down the path that eventually led to the correct diagnosis. IgG was negative, IgM was positive. 

 

So I wouldn't assume that your DD's only exposure was at 3; it's quite possible that she was exposed more recently since many people never see a tick or develop the rash. 

 

I'm so sorry you guys are dealing with this, and I hope you can find specialists who will be open-minded and helpful. We were lucky that our pediatrician at the time was very open-minded and was willing to listen, and do some research of her own, because both the pediatric rheumatologist and the ID specialist we saw were uninformed (to put it politely) and unhelpful.

 

:grouphug:  :grouphug:  :grouphug:

 

Thanks for sharing  your story, that is very helpful. Dd's Western Blot was the same pattern as your ds's which was interpreted incorrectly, as I've found through additional research. Interesting to see that same pattern.  

[AlmostEmptyNest]

Hi Rose, 

 

I'll share a bit of my DD's story and see if it addresses any of your questions. 

 

In Feb. 2107, I took her to a primary physician because of fatigue and severe depression. It was that physician who recommended running a blood test for Lyme because, in her words, she saw depressed teens "all the time" who tested positive for it. At that point, I didn't know anything about Lyme beyond a tick bite and rash, and agreed to to test though I was sure my DD didn't have it. It came back positive -  IgM band 23. The physician explained that an IgM band indicated a recent, acute infection. This information was confusing because her symptoms had begun about two years prior, which seemed to be beyond the range of acute. 

 

We have absolutely no idea when she might have been bit by a tick. One of the LLMDs we worked with explained that a person can carry Lyme around for awhile and then something happens to trigger it - like a stressful event. We speculate that her symptoms began in 2014, shortly after her older sister moved to college, which was stressful for us all. 

 

Besides Lyme, the LLMD believes she has Babesia as well, based on symptoms. The alternative doctor we are now seeing has also uncovered Erlichia and Bartonella. 

 

Feel free to message me if you want to chat more. 

 

 

 

[Farrar]

I know someone who got sicker and sicker, was diagnosed with a variety of different things, ended up on so many medicines she became essentially unable to function (I didn't know her then, only later but was shocked when she said how she lost the ability to walk for awhile). She ended up turning away from Western medicine and doing a lot of yoga, acupuncture, etc. She got better, but still was chronically ill, just managing her pain really well. That's when I met her. Finally, well over a decade on, she was diagnosed with Lyme. Turned out it had almost certainly been Lyme all along. As I understand it from her and others, that *is* a form of Chronic Lyme.

 

Because of her experiences, she was unwilling to entirely go back to Western medicine. I know she did some things and changed her non-Western medicine treatments to deal with the Lyme as well and that it helped, but I don't know the details.

 

Rose, I'm so sorry you're dealing with this! I hope things get better for her!

 

 

[mominco]

:grouphug: Hope you find your answers!

[Nemom]

I was bitten at 22 or 23 years old (around 1990).  Had a rash but no other symptoms and live in an area where it is (falsely) believed lyme doesn't exist-especially in the '90's.  Not treated for those reasons.

 

The year I turned 40 everything changed.  I became extremely sick.  Was initially dx'd as Fibro & CFS.  A few years laters, I received the lyme diagnosis at the same time as my dd got hers.  Both of my kids have congenital lyme.  

 

You will find, over time and with the more people that you talk with, that a lot of people with lyme had it for years before they were tested and treated.  

Edited August 27, 2017 by Nemom

[Lizzie in Ma]

Just this morning, a friend was diagnosed with Babesia, which is Lyme-related. 

I know nothing more, but will throw this rare diagnosis out there.

 

Babesia is the most common co-infection with Lyme, so common that the ER's around here call it the "Summer Flu".

[Lizzie in Ma]

She tested negative for babesia, and she doesn't have recurring fever, so I think we can rule that one out. However, she does test positive for Mycoplasma pnuemoniae IgM, which the ped wants to ignore because she doesn't have upper respiratory symptoms. It didn't take me long to uncover the fact that Mycoplasma is a common Lyme co-infection. This was news to the ped. I insisted on an ID consult, which is coming up, as my ped seems clueless. I'm in the process of trying to find a good ped at Kaiser (recs from friends who are drs) who is taking new patients to try and get better primary care.

 

 

Wow, diagnosed by a vet. Ironic that vets are more up on Lyme than human doctors. Also that there is a vaccine for animals but not humans . . . 

 

I'd be very interested in hearing about your treatment, whatever you are willing to share - via PM if that is more comfortable. Both the active treatment and the current long-term therapy your LLMD has recommended.

 

Yes, it seems like "Chronic Lyme" is used to cover a variety of situations, including post-treatment and untreated conditions. But when I read about MDs that don't believe in chronic Lyme, the story seems to be - if you are treated and symptoms persist or return, then it's not Lyme, it's something else.  But in my dd's case, she has never been treated. She never got sick from her known exposure (11 years ago), until 1 year ago when she suddenly did, after a short sickness with some kind of GI bug. Our first ped diagnosed her original illness (last August) as viral meningitis. Who knows, maybe she was right and that is what triggered the Lyme? It seems possible, at least.  Do you know what triggered your crash?

 

Might be good for you to watch Under Our Skin, explains a great deal of why you get so much conflicting information.  :grouphug: :grouphug: