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Posted 6/29/2017 10:48 PM (GMT 0)
Hello: Everyone on this forum has been super helpful with advice. I haven't quite been able to see a LLMD, because they aren't super close to where I live in Philly--in fact, they're not in Philly at all, and I don't own a car (as many of us Philadelphians don't need one).

That said- I was planning on advocating for myself to my primary, who is pretty helpful, at least for the time being. He started me on 100mg 2x a day of doxy for 2 weeks. Many of you remarked that this wasn't enough. Interestingly, during this time I felt like my main and only symptom--the facial paresthesia was subsiding.

Since stopping the doxy last Friday, it seems the paresthesia is back in full force again. I was going to use this as leverage to my doctor to put me back on doxy. My question is- does this make sense? Would my symptom go away and suddenly return after discontinuing doxy? What resource can I send that shows doxy should be at least 20 to 30 days?

Thanks everyone!
Posted 6/29/2017 11:03 PM (GMT 0)
Absolutely. The reason being taking mono doxy sent the Lyme bacteria into stealth mode, and once you stopped taking it, allowed the Lyme clearance to come out and wreck havoc some more.

So not only are you not taking a strong enough dose, which should be 400 mg a day, you also need to take an additional antimicrobial substance, either abx or herbal, that breaks the blood brain barrier/cysts to expose the hiding bacteria to something that kills it.

Would your PCP believe any link sources? Something from ILADS, or many of the notable researchers such as what Buhner has written, or Dr. Rawls.
Posted 6/29/2017 11:05 PM (GMT 0)
There is no guarantee that with 20-30 days you will heal either.

You might feel better at the end of the 20-30 days, just like you did with the 2 weeks, but this discontinuance of antibiotics has a good chance of setting you back to day one of symptoms.

Sorry to say this....

Maybe find an herbalist to help you? buhnerhealinglyme.com/resources/herbalists/

Just looking you might find Connecticut the closest??? Not sure because I am on the West Coast.
Posted 6/30/2017 12:25 AM (GMT 0)
You weren't on it long enough - when you stop treatment too soon, the symptoms come back.

How long did you have symptoms before you started treatment? Is this a recent infection..or chronic?

You could show him Dr. Burrascano Lyme Treatment Guidelines - ILADS has a link to them on their site.

the guidelines show the dosage of doxy, as well as duration of treatment depending on the stage you're at.
If you've had symptoms for many months (and disseminated) - you are looking at months (or longer) not weeks of antibiotics.


www.lymenet.org/BurrGuide200810.pdf

Page 18 - dosage of abx
Page 19 - treatment categories.

You can print off those pages for your Dr.
Posted 6/30/2017 12:51 AM (GMT 0)
I had a positive IgM (bands 23 and 41), negative IgG , so assuming recent. But i've had neck, headaches, and facial tingling since April
Posted 6/30/2017 1:35 AM (GMT 0)

AZez15 said...
I had a positive IgM (bands 23 and 41), negative IgG , so assuming recent. But i've had neck, headaches, and facial tingling since April

No, the IGM doesn't mean recent. It just means an active infection.

I had lyme for at least 15 months and I was IGM positive on the wB.

So your symptoms started this past April? And you started treatment a few weeks ago?
Posted 6/30/2017 1:46 AM (GMT 0)
Yep! Symptoms started in April and a blood test (I was going to a neuro for headaches and the tingling) showed a positive lyme test. I started doxy around early June
Posted 6/30/2017 1:51 AM (GMT 0)
That's interesting btw-- I didn't quite know that distinction that IGM is just active and not necessarily means the tick bit recently
Posted 6/30/2017 1:51 AM (GMT 0)
Well - that is quite recent - so do what you can to knock it out - you don't want this to become a long-standing chronic infection.

Do what you can to get more antibiotics...and treat to symptom free PLUS another 4 weeks after.
Posted 6/30/2017 1:56 AM (GMT 0)
I actually should mention that the headaches started a year ago---the tingling was in April, which led to the blood test. So maybe those headaches can be linked to the lyme. Anyway, thanks for your help!
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