For anyone who is familiar with Lyme Disease...

[EMS83]

Resources welcome. Anecdotes welcome.  

 

I've had Lyme (have? now I don't know), but I was  teenager and so beyond feeling like dying and being fed doxycyclene, I don't know much.

 

DD has had the Western Blot twice now. 

On the first, IgM P41 was present, and IgG P66 and P41 were present.  

On the second, no IgM present, and IgG P66, P41, and P39 were present.

 

So....does that mean for sure she's been exposed?  

 

The pediatrician (integrative) wants to continue supplements DD is supposed to be on, and also a month of antibiotics and then a urine test that I guess tests for more strains and other tick borne illnesses.  But if it's likely, why not just treat?  We're a pretty antibiotic free household, so I'm not as concerned with over-medication as I am that the stronger stuff kills all the floras.  DD is otherwise healthy, but I don't want to wipe things out if I don't have to.

 

But I'm also clueless.  Having Lyme and knowing anything about it are two different things!  Thanks for any replies.

And I'm sorry I didn't just update my original thread; I can't find it.

[AlmostEmptyNest]

Hi,

 

There are others here who have lived in the Lyme world longer than I, but I’ll give my two cents until they chime in. :)

 

First, certain bands are Lyme specific, and I believe 39 is one of them. There are articles and charts online that tell about the bands but I haven’t had a chance to find one yet.

 

Also, my understanding is that IgG and IgM don’t mean anything, really, with Lyme. Those pieces of information are helpful for other diseases but Lyme plays by its own set of rules.

 

Whether to treat with antibiotics or not is always a tough call. Our LLMD treated my DD with heavy amounts of abx and herbs. After six months there was absolutely no improvement, so we moved on.

 

Since your daughter feels well, I would consider using herbs, eating clean, and exercising to keep her immune system strong. Every single person is different, and hindsight is 20/20, but I wonder how things would have been different if we had taken that approach with my DD. At the time she was diagnosed with Lyme, she was at least able to function and keep up with school. Once we started her on abx, she went downhill and hasn’t been the same since. I don’t have solid answers here but am wondering and thinking out loud.

[EMS83]

Oh wow,  :grouphug:   Thanks for responding.  I hope your DD recovers fully with time and care.

 

And no, my DD definitely hasn't displayed the symptoms I had.  I couldn't peel myself off the couch and don't remember much about that period beyond that and a doctor's visit or two.  My DD complains of things that could easily be dehydration or insufficient exercise.

 

But the few blips of things I've read seem to indicate it might not matter--that Lyme could actually hide and screw up things worse in a different way?  I'm not even sure which websites to trust and which not to.  :confused1:   I don't think my mom saved her research.

[Suzanne in ABQ]

Lyme Voice is a Facebook page that shares resources and support for those dealing with Lyme Disease.  It is hosted by some acquaintances of mine.  The wife, Sarah, dealt with Lyme for many years.  Now, they share what they've learned with others.

 

https://www.facebook.com/Lyme-Voice-1557989807801733/

[StephanieZ]

Does she have symptoms of Lyme? What are they? When did it start? How long have they lasted?

 

IME, with acute Lyme this summer that almost killed me (no shit), I found that all "normal" doctors don't know shit about Lyme, and that they all think a month of doxycline (regular, low doses) will kill it. That was NOT the case for me. And from what I've learned, I think it's fairly common that the month doesn't do it.

 

If your kid is still in the "acute" stage (a month or two post-bite), then a month of ABX might do it. Maybe 90-95% of acute cases will respond to a month or so of doxy and she'd be good to go (according to my LLMD). The other 5-10% of folks won't respond to the month of low dose doxy. They will fight this damn disease for years or a lifetime. For me, given how terrible my Lyme was (in my brain, excruciating pain from Lyme meningitis) and how wide-spread (disseminated rash all over me) . . . I decided to abandon the "regular" doctor bullshit and go to a LLMD. I was on SUPER HIGH doses of multiple antibiotics for a total of three months, and then I went off, and now, a month or two later, I'm symptom and (hopefully) disease free, and surely hope that lasts forever. (Will feel more confident in several more months . . . each day that goes by makes me more confident that I've kicked it). Others, who caught the disease much later, may never be able to "kick it" and end up on various ABX and/or herbal and/or all sorts of other more invasive regimes for many years. Others go ahead and die.

 

So, for me, I was very happy to get access to a LLMD and get proper treatment. If it were me, or my kid, I'd get them to a LLMD IMMEDIATELY.

 

Understand that almost no LLMDs accept insurance. You will have to cash pay. You may be able to get reimbursement from your insurance and you might be able to get your meds and labs covered by insurance. In my case, insurance covered all my labs and drugs (to the tune of about $5000 in drugs over 3 months), so that was awesome. I submitted my receipts for the DR visits to our insurer, but I'm actually not aware whether we ever received any reimbursement (dh handles our bills). I don't care. I'd have paid any amount to get treatment. 

 

Clearly, most cases of acute Lyme resolve w/o any medical intervention and many/most other cases respond to the standard 3-4 weeks of low-dose doxy. If that weren't the case, we'd all be dead, lol, as Lyme is everywhere and is an epidemic. So, most folks survive by taking their chances with traditional doctors. Those others who don't get the happy side of that gamble are really and truly F*CKED for a very long time. So, I didn't take chances. (Besides which, the symptoms of Lyme that I had were utterly unsurvivable, so it's not like I was "just" taking the chance of having arthritic knees or being really tired/brain foggy for life . . . Although those are also some really crappy conditions, at least they would have been survivable, whereas my pain was not.)

 

I used to be afraid of antibiotics and drugs. I'm now VERY VERY thankful for the "nuclear" antibiotics I took. They saved my life and gave me a very good chance of being healthy for many more years. I'll be on nuclear level probiotics/supplements for at least a year (and was all throughout treatment) to try to undo the damage to my GI/microbiome/etc . . . but so far, I've escaped major side effects of all those ABX, likely due to my aggressive probiotic regime. (I take 10 capsules of various probiotics/supplements twice a day . . . and was taking even more other supplements/herbs when I was on the drugs.) 

 

Find a LLMD. IMHO.

 

 

 

 

[StephanieZ]

ps. So far as co-infections . . . those are best treated based on symptoms. Again, a LLMD will be the one to figure this stuff out. 

[EMS83]

No the suspected bite was in May, if it was indeed that bite.  We hike occasionally and our yard is the ideal habitat for ticks, so theoretically, exposure could have been any time, really ever.  I wanted testing because this one bite in May developed a rash, but not a bullseye, nor widespread. 

 

But no obvious, crazy symptoms.  Achy legs, most often after playing, but sometimes randomly.  Days of tiredness, but not literally-can't-move lethargy.  In short, symptoms that could indicate so many other things, including unfitness and laziness.  kwim?  But the Western Blot suggests (blatantly indicates?) recent exposure (as in, within the last 6 months).  That's why I'm even wondering what to do.  She doesn't appear to need a nuclear blast of ABX, but if she did, I'd do it.  I just don't want to do that unnecessarily.  

 

There's no insurance to turn in receipts to, so if expensive things couldn't be spaced out, we're looking at a loan or a higher credit card limit.  I don't want to spend money unnecessarily, either.  It's the classic I-wish-I-had-a-freaking-crystal-ball scenario.  :D :(