Need advice and direction

Hello! I’m not even sure where to start....I feel like I’m alone in this and have no direction. I was recently diagnosed with Lyme disease may 2019. (Diagnosed with chronic Lyme) I feel like I could write a book just to explain my journey so far, but I’ll try to keep it short. I was tested by an integrative md with test results being positive for Borrelia burgdorferi, Epstein Barr virus, human parvovirus b19 (with weak result for Babesia microti igm and mycoplasma Pneumoniae igm...whatever that all means).

Doctor suggested 12-14 IV treatments of IPT with abx of doxy, rocephin, and Clindamycin along with ozone therapy and vitamin c. He said he could get me to 85% better. Also started me on supplements as well. And a green diet basically cutting out sugar, low carb, processed foods. Now mind you I was told of these initial treatments only in my first visit with him. Now I’ve finished treatments and now I’m told I need monthly maintenance. IPT once a month.

I guess I’m confused because I feel like I was led to believe that the treatments would be good enough and that would be it. I’m learning that most likely isn’t the case with people who have the disease. I don’t know much about this disease yet. I’m learning.

So here’s my problem. Before I finished with the 12-14 treatments I had seen the doc and said something about issues with anxiety that I was having. It’s not debilitating and I feel like I can handle it when it comes up with breathing and self positive talk. I do see a therapist bi weekly and have for 5 years. I’ve talked to her about it. He offered to prescribe something and I said I didn’t think I needed it at this time. So I go on vacation and come back 2 weeks later to have another consult with the doctor. He asks how I’m feeling and I explain pretty good a few symptoms popped up but attributed it to the fact I didn’t do the best with my diet. I had sugar and what not.

He proceeds to ask me how the regimen was working that he gave me for the anxiety. I reminded him we didn’t go that route at this time. He tells me how I’ve been such a good patient, one of his bests but then tells me how he is sensing resistance. This went on for a few minutes. He tried to push another med for anxiety, which I told him I didn’t want. Then he also told me of some virus that enters the body that can alter your dna. At this point I’ve sort of lost what he was saying because I was so confused as to what was going on.

I walked out of there feeling like it was manipulation of some sort. It has bothered me all week. Now I’m not sure I want to continue with him at all. But I feel like I’m not educated enough on this disease, so I’m second guessing myself on whether or not to follow his direction. But on the other hand I feel like I’ve not been educated enough by him about this disease. I feel like I’m navigating this alone.

I’m overwhelmed and having been reading posts on this site for about 2 weeks and felt like it was time to ask for some advice and direction. I feel like I should be doing more to treat this but I don’t know what to do. I know I need to be my own advocate but it seems hard when you don’t even know where to start or what questions to ask or what is right and what is wrong.

Thank you for your time in reading this. Any advice would be greatly appreciated!

Welcome, Sunshine.

What is IPT?

Did you get treatment for Babesia?
That usually means antimalarials - Mepron or Malarone are commonly used.

I would feel manipulated too - I think it’s time for a new LLMD.

Thanks Dude.

Lower doses with better results sounds intriguing

Yes IPT is what dude posted. Insulin Potentiation Therapy. I have not been treated for Babesia. Just the Lyme. The doctor I saw said nothing about Babesia.

Donjr said...
You need a llmd please see one ! Where do u live? We can help u find one

Thank you, I appreciate the help. I live in the north western suburbs of Chicago, Illinois.