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trytocancel
Regular Member


Date Joined Aug 2007
Total Posts : 263
   Posted 10/21/2008 9:16 AM (GMT -7)   
I dont

Post Edited (lita31) : 6/25/2014 5:03:24 PM (GMT-6)


ktp812
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Date Joined Jul 2007
Total Posts : 715
   Posted 10/21/2008 10:06 AM (GMT -7)   
lita-I see Dr. H in NY also. My first appt. was with his NP John and he spent well over 2 hours with me. I had also been treated elsewhere for a year. They did do tons of blood testing on me but I didn't buy anything from them. Dr. H did come in and go over the treatment plan with me.
 
My second visit I saw John again and he spent alot of time with me. I could have seen Dr. H but decided to stick with John since I felt much more comfortable with him. But again, Dr. H came in and went over the treatment plan. The only thing I purchased was Enula, Burbur and parsley drops. He did give me a list of supplements to take but I ordered them online. They really like the Cowden protocal but I have only done a few of those supplements.
 
I guess what I am getting at is when you make another appt. try seeing either the PA or the NP. Maybe you will feel more comfortable asking questions or talking with them. I know Dr. H knows his stuff as does his staff but for me I am going to stick with John.
He has always gotten back to me when I have a problem either that night or the next.
 
I have to travel almost 5 hours but my doctor here decided my case was too complicated so now I have to go to NY. I just wanted to let you know that even if you see his assistants Dr. H has always looked over the treatment plan they set up for me. In fact I have to go out next month and find out if they agree to let me go back on the Rocephin.
 
If you aren't comfortable and feel that they are not totally understanding your symptoms then I would definately go somewhere else. I know we have all spent tons of money on this horrible disease. As of right now I have stopped the zithro/mino due to severe exhaustion and stomach pain. Hope this helps you out.
 

ktp812
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Date Joined Jul 2007
Total Posts : 715
   Posted 10/21/2008 4:49 PM (GMT -7)   

lita-The PA there is female and I have not seen her yet, just John the NP. I was kind of intimated too the first time I met with Dr. H I think mostly because of his reputation of being one of the best doctors around. I feel I can talk easier with John and since I only go out there every 3 months I want to make sure the appt. is worth the trip. Good luck with your treatment and I do think the PA and NP are much easier to get in contact with if you have any kind of problems. Dr. H goes to alot of the conferences and isn't always around the office. Take care.

Kim


ktp812
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Date Joined Jul 2007
Total Posts : 715
   Posted 10/22/2008 9:50 AM (GMT -7)   

I have had a couple of phone conferences with John. They are definately not as good as in person but it does save money and travel. I was told by John the first appt. that I could either see him or Dr. H. He said they like to have you see Dr. H at least half the time but like I said before I am really happy with the NP and don't want to have to tell my long story again to someone else.

I am pretty sure once you get the testing done, just call and schedule a phone appt. They can set you up pretty quickly since you are already a patient. I had over 5,000 worth of blood testing done my first visit. I never did get all the results. Did they have you do the heavy metal testing. I came back with extremely elevated levels of lead, mercury, aluminum and bi****h. I am suppose to be doing metal detox but the stuff makes me so sick I can't tolerate it. I am pretty sure that is  big part of my symptoms too.

Kim


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 10/23/2008 11:09 AM (GMT -7)   
lita- I am happy I could help..in fact I didn't do one of the tests I was suppose to do either. It was a glucose tolerance test. I was suppose to go to the hospital and drink glucose and then they test my blood every half hour. I just couldn't face doing it at that time and he never even asked me about it. I think he forgot all about it.
I am kind of afraid for Dr. H too. When he came in to see look over my treatment plan and talk about my sleep issues he kind of sounded like an encyclopedia. I know he is brilliant but he was kind of beyond me. John is much more on my level if you know what I mean!
Good luck with all your test results etc. Please keep in touch. I am seeing John on the 14th of Novemember and we will discuss going back to IV. I am all for it..take care
 
Kim

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 10/23/2008 5:09 PM (GMT -7)   
lita- I agree 100 percent with you..I am use to talking things over with my doctors too. I was actually afraid to make any kind of suggestion to Dr. H about the different medications. John is much easier to talk with so once you get done with your phone appt. with Dr. H then try and see one of the assistants. I remember the first time I saw him in the office I said to my husband That was Dr. H..I can't believe I am actually standing in the same room.  It was kind of funny because I had read so much about him and there he was . Well, I wish you luck too and keep in touch okay?

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 10/25/2008 2:09 PM (GMT -7)   

Hi,

I want to weigh in and say that IMHO there is no doc that is 'the best of the best'.  Some are good with some patients.  I knew after 2 visits that Dr.H couldn't help me.  I need a good listener because my case/scenario is more complex than the average complex lyme case.  Each of these docs, they have strengths and, y'know, areas they need to 'stretch' in. ;-) Intimidation is not something I wanted to deal with in an appointment- I knew I couldn't grow in that environment.  So I switched and I feel much better.  I was upset about it initially.  I tried hard to convince myself that I don't need to 'like my doctor', just get better.  Soon I learned though (the hard way) that just because someone sounds very knowlegable doesn't mean s/he is the right person to help me.

If we elevate these folks on such pedestals, we allow ourselves to be knocked down.  Some doctors enjoy this position, while even preaching otherwise.  I say, just be on the lookout for those who don't 'walk their talk'. Sorry I'm being a little ambiguous, some of you will know what I am referring to.  I suppose I want to give support to people whom have gotten what I call "the buddhism talk". My point is this: It is not good for anyone to feel their doctor doesn't listen, pre-packages treatment, invalidates their experience, and talks just to be heard.  We need to fight and to be able to advocate for ourselves.  In my case, the decision was made for me in the end (I was given the boot after I tried to advocate).

I now have docs that listen to me, believe me (my symptoms and the severity).  They are smart, they don't rush me or refuse to be my doctor, don't get intimidated easily.  What's more, they are NICE, pleasant, uplifting.  They are open-minded and look at me as an individual, not a 'lyme patient' with a pre-wrapped packet for treatment. 

They do not communicate as well as JF & RH.  That is one drawback.  Like I said, each of these docs has different areas of strengths, it was a matter of me choosing what was most important to me and my path to better health.  After a few years of pretty bad doc experiences, I am pretty content at this point.  If we are all connected as a community, we can try to stay on top of treatments and testing.  This makes me feel more comfortable about going / sticking with one doctor for some time.

My .02 + cents worth.


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 10/26/2008 4:55 AM (GMT -7)   

Honestly I was very happy with my doctor here in NH but he felt I was beyond his expertise. In fact he is the one that put me on Rocephin which has had the most positive effect for me.

I didn't want to go out to NY but that was what he really wanted me to do. I think I was expecting a miracle to happen when I got out there and saw Dr. H because he is such a big name doctor and I had very high expectations. I feel quiet comfortable with John but still do not feel as though I can give him my opinions on what I should be taking. My doctor here I have been seeing for 2 years and is learning along with me so we had real good communication and he would do just about anything to get me well.

For now I am going to stay with John who is co-treating me along with my doctor here. If it gets to a point where I feel it is not in my best interest then I will go elsewhere but JF has been really good to me and always gets back to me that day or the next even if it is ten at night.

Even the best of the best might not be the right doctor for me but I have to at least give it a fair chance and if it doesn't seem like we are headed in the right direction then I will be out of there..

 


tropicalsun
Regular Member


Date Joined Jul 2006
Total Posts : 407
   Posted 10/26/2008 12:49 PM (GMT -7)   
lita31, I communicated with you months ago and even emailed (don't know if you remember). I haven't been on the forum in months. Believe me, it's not cause things are better.  Anyways, I have just come back from seeing Lauren the female assistant at Dr. H's for the second time. She is easy to talk to as well. I was supposed to see Dr. H this time but was asked if I could see her instead because Dr. H was overbooked. Well maybe they should be more organized since the appointment was made by them in July. I met him on the first visit. He seemed fine to me so far.  It turns out I am positive for Mycoplasma as well and they think I have Babs as well in addition to the Bart. & Lyme. Does the confusion ever stop?  I guess you haven't been treated for your Bart yet? 
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