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Anyone have experience with THE Dr. H out east?

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Lyme Disease
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Posted 7/1/2015 8:45 AM (GMT -5)
As many of you know, I'm in a suburb of Chicago, Illinois. I currently travel 4 hours each way to my LLMD and 2 hours each way to my LLND.. However, I just feel like I'm regressing as each day passes and I'm thinking of trying to many an appointment with Dr. H in NY. Money is not an issue for me and time isn't an issue either if it comes to getting my life and health back.

Does anyone have any experience with him or his treatments? I've read part of his book but didn't finish it.

Since my anxiety and vertigo is at an all time high I would be diving there from Illinois. 12 hours total. But I've driven to southern Florida before and it was 10 hours more than this trip would be.

So, any advice or anything would be greatly appreciated.. Again, this is just a thought..
Posted 7/1/2015 10:22 AM (GMT -5)
Hey Aly,

Sorry I have no experience with Dr. H to share with you. How long have you been treating again? It hasn't been very long right, like a month or two? The only thing I can say (from what I know) is that there is no quick fix to this (even if you see Dr. H in NY) and that you are so early in your treatment. I wish it was quicker! What do your docs say about how you're feeling?
Posted 7/1/2015 10:25 AM (GMT -5)
I don't think it's necessary for you to find a new LLMD, since it sounds like the people you are currently treating with know what they are doing. You should give it additional time before you give up on them.

Also, I would imagine Dr. H has a significant wait list, so if you really are planning on seeing him, you should call and find out what that would be, before you start making travel plans.
Posted 7/1/2015 11:50 AM (GMT -5)
I think he's moved on more towards advocacy, public awareness, and training others about lyme and co. He's still the director of his facility but I'm pretty sure if you go there you will get another doctor (that was trained to use his methods of course).
Posted 7/1/2015 1:04 PM (GMT -5)
Sarah- I'm not giving up on my doctors, I'm just making sure I have a plan c,d&e (because I've already gone through plan a and b) in line. I know it's only been a few months but I'm literally getting worse as every day passes.

Lymepickle- thanks! I'm still looking into his practice, I'm sure his wait list is longggggg.
Posted 7/1/2015 2:03 PM (GMT -5)
Alyrose, since you feel like you are getting worse, you may be herxing. It might be a good idea to evaluate what you are doing to detox.
Posted 7/1/2015 3:03 PM (GMT -5)
I got worse and worse with treatment too. It's hard to keep the faith under those kinds of circumstances especially if your brain function is compromised.

I'd call and get on the wait list. It will likely be a long time anyway. Maybe by the time you're coming up on the list you'll be way better or worse and can make a decision at that time. You can always cancel if something works out in the meantime.

If it's been a few months maybe it's time to simply change your medications? And up your detox? Maybe get some 23 and me testing done and see if anything comes up.

I've never seen Dr h. But he seems like a very humble and compassionate doctor. Good luck!
Posted 7/1/2015 3:33 PM (GMT -5)
Hi Alyrose-
I'm sorry that you're not seeing more progress! I know all too well how frustrating that is unfortunately. Dr H is my doc and I see both him and his NP - all his patients see both. I see him and then go a couple months seeing his NP and then I follow up with him again. It's his way of being able to get more people into his practice. I love them both and actually prefer having 2 Lyme experts monitor my care. He does have an incredible waiting list though. Rumors were flying that he is trying to hire another doc or NP - not sure - but nothing has happened yet. I will say that even with Dr H at the helm of my care, things are painfully slow. He rotates things when it's clear they are not working. He generally likes to see progress within 4-6 weeks of starting a treatment and if there's nothing or a worsening if symptoms, he changes it up. I made good progress in the fall and then went stagnant and actually regressed through the spring. He just started me on a new Babesia regimen that he is testing and it's working so far. Anyway my point is that it's still 1 small step forward and 3/4 step back for me. Please let me know if I can answer anything else. My husband actually goes to another great LLMD in the NYC area that also has a very Integrative approach - I know a few others on this board go to her as well, if you're interested. Also, both my parents are seeing Dr M R in the Seattle area and I know he does phone consults if you wanted to get a second opinion on your current treatment. Dr M R's approach so far seems very similar to Dr H's style. Good luck and hopefully you'll make break through soon!
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