Starting Treatment

[Quidam19]

My rheumatologist sent me a letter and contacted me after looking at my IGeneX results and agreed: Lyme.

I know a lot of people have had terrible experiences with non-LLMDs, but so far my rheumy has been more valuable to me than every doctor I've ever seen for anything, combined. (I guess that's my little shout-out that not all 'regular' docs are bad!)

Started taking 100mg doxy twice daily on Sunday. He's prescribed me a low dose, two weeks for now just until he can get me a referral to an infectious disease specialist. He didn't want me taking nothing, at least, in the meantime. (And if whoever I'm referred to doesn't work with me on this, I know my rheumy will help me find someone new.) I'm curious to see if a low dose does anything. Not sure if I'll tell the difference between a herx (if I have one) and a flare. Charting new territory here.

This is a bit surreal still too. I chased Lyme knowing I had a long list of the symptoms, but deep down figured it would come back negative. I really just hoped I could find out more about my illness, whatever it was, in the process. Turned out it WAS Lyme. It's a crazy world.

I'm hoping that my doc will be able to help me find someone local-ish in addition to him to tackle this mess. The LLMD I saw was the most uncaring, unkind, uninterested doc I've ever seen, the next closest to me isn't accepting new patients, and the third closest wanted over $1,000 a year in member fees and expected you to pay your 'dues' before he'd even see you the first time. No. I'm not saying all LLMDs are bad, just like not all regular docs are bad at Lyme, but apparently I live nearest a group that just wants money. At the moment I can't travel to any ones further out, so we'll see how things go!

[mojogal]

Yes it is normal to wait 5 months. You might also try an integrated medicine Doctor or a naturapath while you wait.

I did 2 years of antibiotics but I am now on an herbal protocol which seems to be working.

[RobNOrl]

Waiting 5 months to get on the right treatment plan isn't going to kill you. I had to wait nearly two years before I was referred to an LLMD (who usually like to keep a low profile) in my area, by a nurse who slipped me a note. He is also a naturopath, and is probably the best doctor I've ever had. I'm on 4 different types of ABX (one every day, one Saturday and Sunday only, one Monday Wednesday Friday, and one Sunday and Thursday), along with the Byron White herbal protocol, along with supplements. You might want to try Byron White's herbal protocol while you wait on the right doc. Try contacting ILADS.

[Quidam19]

Hate to say it... but I finally talked to my doctor again today and they agreed to extend doxy to 4 weeks while I am waiting on the specialist, but followed up with the fact it will be at least 2 months before I get in to see that person and that after 4 weeks of abx I shouldn't be having problems anyway so the specialist most likely would do nothing.

That makes me feel wonderful. *sarcasm*

The closest LLMD I can find, so far, appears to actually be 5 hours away, something possibly manageable for me, but there is a 6 month waiting list. Is this normal?

Also, what do I do? If I make that appointment I'll be on doxy for a month and then nothing for 5.

(I extended my feelers out for a few LLMDs that are a bit further in distance but the online presence I have found from those docs make me not trust them from the beginning and that's never a good thing.)

[Quidam19]

Good to know!

[mojogal]

Many Lymies see integrated medicine doctors or even naturopaths when the don't have an LLMD near by.

[cave76]

Thank you for your honest reply, I can understand your position and hope you can figure out anything to do that will help you get relief and help from a good doctor (for Lyme)

[Quidam19]

Thank you. =)

I know the treatment I'm on is not the 'expected' or 'recommended' at the moment. I will be asking straight-forwardly to be put on something more appropriate as soon as I can.

I'm very nervous about seeing the specialist because I do hear lots of horror stories. And if this doc doesn't show promise from the first appointment I will find someone else. That's all there is to it.

I'm not against trying another LLMD, I don't want anyone to misunderstand that, I just have no possible way of seeing one at the moment, due to my location. Anywhere I'd go would be an overnight trip at this point and for multiple reasons that isn't possible for now.

So for the moment I'll chase what I can locally, but I won't put up with doctors who won't help either. *sighs*

[mojogal]

You are lucky you found a Dr who kept you test at IgeneX. The usually treatment is 200 MG doxy twice a day,

Usually infectious disease docs are the worst in believing and treating Lyme unless a recent bite.

I know of one here that does but he is in the minority. Sorry the LLMD wasn't good but like everything there are good and bad ones. Dealing with Lyme is fiery complicated and you may have co infections to treat.

Good luck.

[cave76]

@quidam--- you said
"Started taking 100mg doxy twice daily on Sunday. He's prescribed me a low dose, two weeks for now just until he can get me a referral to an infectious disease specialist."

He may be a really nice non-llmd but his treatment plan is not what is recommended by top-tier LLMDS.

And referring you to an infectious disease specialist may not be the 'favor' it seems at first.