Don't know what to do, again

I saw the infectious disease doctor today and got my test result. And I only realized when I saw the report today that the doc actually sent my blood to mayo...

And the serology test is negative, but it didn't state it's Elisa or western blot. But there's no bands or stuff, so I guess it's Elisa?

All my other stuff seems normal too, RBC, WBC...except I have slight elevated monocytes 0.93K/uL (réf: 0.20-0.80).

I started doxy after 2 weeks after bitten, and this result was from blood drawn the 5th day I started the doxy. Which is about 3 weeks after I got bitten.

As far as I understand, the Lyme test can be very inaccurate, especially with mayo. On the other hand I also read that the strain that they test in US and Europe are even different, now I don't even know if it makes sense to test in US while I got bitten in Europe at first place????

I'm illiterate in medical stuff, but my brother who works in lab explained to me that with me normal (but slightly closed to high point of range ref) of neutrophils and slight elevated monocytes, it means I got bacteria infection before the blood was drawn, and his guess is they were being fought and for a while possibly end of the "war".

Now I have taken the last of my original 14 days doxy, and this doc said he doesn't see any need to extend the treatment. He doesn't see it could be barb too, since my RBC is normal.

It's true that my symptoms are getting better these few days. I feel less and less fatigued, no more brain fog, only occasional dizziness. This made me believe the sudden horrible feeling I had soon after I started doxy is really herxing. But the sore throat has been coming and going all through the month, and last night it disturbed my sleep even. But I'm sure I don't have a cold/flu, as it has never come, it's just this nagging sore throat and occasional few hours of non stop runny nose that ressembles more like allergy in spring.

However, if what he said is right, that I don't have Lyme, of course it's a good thing. But then what we're all these stuff that I had been experiencing for the whole month? Was I paranoia? Sure they're not very serious, but it's nothing compare to what I experienced before as well. Not to mention this strange sore throat is still here.

Could it be some other infection from the tick? Should I just rest my mind and be grateful that I'm not tired now anymore, no numbness or pain? And continue treatment with the TCM doc who believes I am infected by some kind of borelia bacteria, then hope for the best (that no chronic) or should I go try my wit to find doxy at pharmacy for 2 more weeks just to be safe? (is that harmful in anyway? I have taken doxy as long as 8 weeks before but 100mg daily for malaria prevention. But I didn't experience fatigue at all during that time) And do other tick borne infections characterized by herxing after starting doxy as well?

I'm sorry, my problem is probably not that big. But I'm confused because what I experienced were real even they were not life threatening, on the other hand I don't know whether which side weight heavier.

You're problems are just as important as anyone else's here, Alison.

You need to continue the Doxy, or have alternative treatments. The TCM doc could continue your treatments though. There are articles that can help guide them if they are not sure how to treat these infections, or you could do Buhner's or Cowden's protocols, either directed by you or your TCM practitioner.

The testing is not accurate. Since it was Mayo, it was likely the Elisa, and it can miss up to 50% of those that actually have these infections - not counting the other strains of Lyme. And, an ID doc likely wouldn't know a positive test if it bit them. I've seen where an ID doc has told someone that is CDC positive that they don't have Lyme.

It's quite possible that it's other infections that the tick/insect passed to you at the time as well. Bartonella causes a lot of symptoms that are pretty similar to Lyme - and often causes sore throats. Babesia is another common infection that is passed.

Keep on working on your healing, no matter which path you choose.

I would get some more doxy and continue taking until you are symptom free plus a few more weeks. Try not to have a break in the treatment...or minimize the break...so act on it now.

The risks of this going chronic (stopping treatment) are much more than taking a few more weeks of doxycycline.

You don't need to re-test - you had a tick bite plus symptoms ensued. You have LD. A test won't tell you when to stop antibiotics.

It's good that you are getting results with the doxy you have taken thus far...keep it going.

Yikes!!! I'd seek another opinion too, I think. Some of the European strains have wicked neurological effects, I have a cousin in the UK that got Lyme there and had Bells Palsy at first, was treated, but still struggles with extreme fatigue. MM57553 said it very well.

Lyme disease is an exception. Of course, lab values matter, but not as much as your signs/symptoms and intuition, gut-feeling. The illness is largely subjective. It's not like cancer, AIDS, a kidney failure, cardiac irregularity, or whatever, where your lab values or other diagnostic measures can say, without a doubt, this is what's going on.

Patient-centered care, that's what we're supposed to be getting. What's going on with Lyme patients is illegal. They draw the line at lab values, and then seek to misdiagnose and/or belittle you. Psychosomatic illnesses are real, I believe that. People can think themselves into being sick. But, majority of us who feel these ways, it's something a lot more than that. People don't just think the illness complex that is Lyme/co into existence. It's beyond imagination.

My brain forgot how to paragraph tonight.

Love, love.

That is so true, I had been in denial that I could get Lyme for 2 weeks, until the symptoms were so strange I couldn't brush it off. As if I would have thought it into existence. And yes, the worst is when the doc talks like, well here is your negative result, so I don't know why you tell me you're not feeling well.

I read all about the two tier testing system in US and the CDC standard of negative can be inaccurate. But I didn't even thought about being so far away, could still got trapped in this system too, because if a doc here knows anything, he would still adhere to the CDC standard to be safe. Well, for himself, unfortunately not for me.

This illness is so political!