Crazy LLMD appt today.

I had my LLMD follow up. I should mention that she is friends with Horowitz and follows a lot of his protocols. She is also very aggressive.

That said, between reading Horowitz's book and Lyme Pickle's med list, I have been almost 100% accurate in predicting her next move. Even my husband jokes, "why are we paying her, when she gives you exactly what you said she would." Lol.

So, being on mepron for 5 weeks and biaxin for 2, I THOUGHT she might add plaquenil or Bactrim DS (or septra DS). NOPE!

1. She wants me off all meds, supplements, herbs, vitamins. I'm ONLY allowed to take probiotics.

2. For the next 2 weeks, I am to go to the clinic twice per week for 2-3 hours to receive glutathione and Meyers Cocktail IV's and use their infared sauna for an hour! She feels I don't detox properly.

3. Then the following 2 weeks, I am to report to the clinic for the same treatment plan, BUT she will also add IV rocephin. She will also start me on actigall (?)

4. If tolerated, I will be placed on a PICC.



I did NOT see this coming! Completely threw me for a loop! I forgot to ask my questions that I had written down! Lol. Duh!

She claims that I should have responded by now. Neurolyme, in her opinion, is the hardest to treat. I told her my night sweats were worse and I had air hunger. She agrees I have babesia, and she will add the babs meds back later!!!

Nothing has helped me so far. I have no reason to believe that the rocephin will do anything either. I'm freaking out over what all this is going to cost. Yikes!!

...

Wow, not heard of this yet, how long have you been treating with her again? I'm thinking not long, you would think she would give it more time, I felt way worse for months before feeling better.

Well hope this makes you feel better, it sucks being sick.

Did you ask her about the elusive Band 31?

I hate to sound like a broken record here on the forums, but I like to promote medications that have helped me. That medication would be Low Dose Naltrexone. LDN has been discussed several times on the forums, but it seems not many want to venture this way. Even when I am sitting at my LLMD, who prescribes LDN to me, I talk with other Lymers and they have NEVER heard about LDN.

If you have and it seems like you have, tried several medications with no improvement, give LDN a chance. It can take a few weeks to months to kick in, but it will be worth it. I started LDN due to an MS dx and since my improvements, I have promoted it to other MS patients (who are friends) and they are doing better as well.

Anyway... research it if you have not already and ask your LLMD to try it. At minimum, ask her what she thinks about LDN and Lyme. I wish you the best!

I forgot to mention that I think the Meyer's Cocktail has some great benefits, unfortunately insurance does not cover this and it became quite expensive at 185.00 a pop. Instead I supplement with Complex B and NAC and eat a high cysteine diet since cysteine is a precursor to Glutathione. All the MC I need at a fraction of the cost.

Thanks ilyme. I did try LDN, years ago, before I knew I had Lyme. I was on 4 mgs, I think, for about 3-4 months with no improvements, so I went off it.

My LLMD did do the MTHFR test at my first visit. It did come back with 2 copies of a1298c (or whatever it's called). I think that's why she feels that I have problems detoxing. And honestly, no amount of detoxing had ever alleviated any of my symptoms!

I cannot order the 23&Me because it's not allowed in NY state. I have to try to find a way around it. Has anyone gained any significant knowledge from that test? Anything to help them feel better?

Awesome! Rooting for you girl!!