HealingWell
Search Close Search
☰

Late lyme (assuming right term for 12+ years no treatment)

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/6/2018 3:42 PM (GMT 0)
Hi everyone. I finally saw my dr regarding Lyme. I’m going to have to get a specialist. She’s going to humor me with 21 days of amox but is calling it a past infection. I was IgG positive and IgM ind. I offered to pay for test 488 but she just prescribed 21days of amox. She’s completely going by cdc. Time to find another dr.

I’m assuming this is late stage. I’ve had it for at least 12 years and this is the first testing. First treatment for it. I’m foggy today and been ill. The only antibiotics has been 3-5 times a year for sinus infections, bronchitis and such. They were only 10 days at most.

Post Edited (Val319) : 8/6/2018 10:54:12 AM (GMT-6)

Posted 8/6/2018 4:54 PM (GMT 0)

Val319 said...
Hi everyone. I finally saw my dr regarding Lyme. I’m going to have to get a specialist. She’s going to humor me with 21 days of amox but is calling it a past infection. I was IgG positive and IgM ind. I offered to pay for test 488 but she just prescribed 21days of amox. She’s completely going by cdc. Time to find another dr.

Is 488 the epitope test? Bands 31 and 41 were IgM positive?

I doubt if your reg Doc will give you much more anyway - you should have a consult with a LLMD.

Is the amoxicillin - high enough dose?

1000 mg 3x daily is what I took.

Can we help you find a LLMD?
Posted 8/6/2018 4:55 PM (GMT 0)
She prescribed 875 twice a day for 21 days. I’m going to start calling drs. Yes 488 is the epitome test but she wants me cdc positive. So even if it’s (crap forgetting words) confirmed positive and changed positive she wouldn’t consider it cdc positive.

Post Edited (Val319) : 8/6/2018 10:58:25 AM (GMT-6)

Posted 8/6/2018 5:12 PM (GMT 0)
Thank you Girlie. It looks like most LLMDs are 4-5 hours drive away.
Posted 8/6/2018 5:46 PM (GMT 0)
Is taking 875mg amoxicillin 2 times a day going to make lyme worse?
Posted 8/6/2018 6:57 PM (GMT 0)

Val319 said...
Is taking 875mg amoxicillin 2 times a day going to make lyme worse?

I don't think it will make your lyme worse...but I doubt if it will help.
Posted 8/6/2018 6:58 PM (GMT 0)

Val319 said...
She prescribed 875 twice a day for 21 days. I’m going to start calling drs. Yes 488 is the epitome test but she wants me cdc positive. So even if it’s (crap forgetting words) confirmed positive and changed positive she wouldn’t consider it cdc positive.

Not many lyme patients are CDC positive...
Posted 8/6/2018 6:59 PM (GMT 0)

Val319 said...
Thank you Girlie. It looks like most LLMDs are 4-5 hours drive away.

That doesn't seem far to me. (I'm flying across the continent to see mine)

Maybe the LLMD that's 4-5 hours away will do phone appts in between office visits?
Then you'd only be traveling every 2 months - or longer if they're appts are spaced out more.


If you don't want to travel - then you could try herbal treatments on your own.

Maybe there is a ND that is lyme literate closer?
Posted 8/6/2018 8:17 PM (GMT 0)
Hi Girlie, I sent you an email. Family is helping me right now. Anywhere near Chicago they won’t go. Right now I cannot drive long distances alone. I sent an email asking about other locations for ND or LLMD. I appreciate the help. If I don’t find one I’ll start herbal. Thank you!
Posted 8/6/2018 8:49 PM (GMT 0)

Val319 said...
Hi Girlie, I sent you an email. Family is helping me right now. Anywhere near Chicago they won’t go. Right now I cannot drive long distances alone. I sent an email asking about other locations for ND or LLMD. I appreciate the help. If I don’t find one I’ll start herbal. Thank you!

I just responded to an email - for Tennessee and Missouri....was that you?


edit: I just went back and checked...and it was you - unless there's another Val looking for LLMD's in those two states...LOL.
Posted 8/6/2018 9:12 PM (GMT 0)
Goddarn some doctors are idiots. Lyme disease doesn't just go away without treatment. There is no "past infection" and if she disagrees I suggest you ask her for proof of that. This is a CHRONIC infection. It HAS to be. That's how it gets to sit around waiting for the next tick bite which can take months or years.

That said I know at least one person that actually did really well on a single course of amoxicillin after being untreated for 20 years. It might be worth a shot. But even by conventional standards you can get IV antibiotics and sometimes longer treatment for neuroborreliosis and late stage illness.
Posted 8/7/2018 12:11 AM (GMT 0)
Yes it was me. Thank you Girlie.

Psilociraptor, it was very odd. “Ok so I’ll need a specialist to treat it.” She acted weird like that would get rid of me as a patient. She sent off amox and tried talking me into taking another med. I’ll be calling drs tomorrow. Thanks everyone.
Posted 8/7/2018 1:41 AM (GMT 0)
I go to cc in mo he can fix u if you go his way good luck and no the amox will not make it worse but you may feel worse around day 5 or so but those bugs need to be killed back to get you to a better place health wise. You can email me with any questions on the llmd in mo. Also the guy named Missouri goes there too. He has treated 12k patients with 93 percent cure rate. The 7 percent had other diseases etc.
Posted 8/7/2018 3:24 AM (GMT 0)

Donjr said...
I go to cc in mo he can fix u if you go his way good luck and no the amox will not make it worse but you may feel worse around day 5 or so but those bugs need to be killed back to get you to a better place health wise. You can email me with any questions on the llmd in mo. Also the guy named Missouri goes there too. He has treated 12k patients with 93 percent cure rate. The 7 percent had other diseases etc.

So he has a 100% cure rate with patients who didn’t have “other diseases etc”??

Well I’m not sure what to think of a LLMD who makes those claims.
✚ New Topic ✚ Reply