posted
I'm sorry if this is long but please read if you can help.
I went to my 1st apt Mon. with a Dr. H. in FL. He believes in chronic lyme. He explained that he is an allopathic Dr. (an MD)but he believes in the other areas like naturopathic, chinese medicince, etc.. and he feels that using only one discipline is not the way to go. However, I thought he was speaking of using supplements along with anibiotics. He wasn't talking about any supplements.
He follows this approach called NAET and NET. NAET is Nambudripad's Allergy Elimnation Techniques which uses Neuromuscular sensitivity testing(NST)to indicate imbalance in the body caused by allergens.
In short, while asking you a true or false question, the muscle testing is done by pressing down on your arm while you try to resist and if your arm goes down the statement is true and if your arm doesn't go down the statement is false.
Dr. D. said he wanted to "treat" using NAET for 12 wks, this means an apt. every week at $135 out of pocket.
I think this is where I made a mistake, when he started talking about this, I got upset and instead of asking the question " what is YOUR protocol for treating lyme?" I said something like "you wouldn't use any antibiotics for this whole 12 weeks?"
His response was "We could do a 4mth IV Rocephin as long your able to" What he meant is I am allergic penicillin and so I may be allergic to Rocephin. He then proceeded to use NAET to test me and say that I am no longer allergic to penicillin and I will be ok on Rocephin. I asked him if he uses anything with this and he said "he adds Flagyl 2wks in to make sure there is no side effects to the Rocephin."
I went ahead and set up my next 8 apt's, went straight to quest to get my bloodwork so I'm clear for the PICC line and then proceeded to worry.
I started to worry whether he would have been using antibiotics to treat or just using the NAET if I hadn't asked the question. I never heard his actual answer for his treatment protocol because I jumped the gun when I got nervous and upset.
Here's the problem, I've already gotten the call and my PICC line is set up for Monday at the hospital. I am worried that if I tell him I don't want to do the NAET that he won't continue treating me with the antibiotics.
I'm not interested in continuing with the NAET treatments, $135 a wk is exp. out of pocket, I don't go any place weekly as I'm just about house bound from pain, I'm lucky if I get to my son's hockey games & it is not something I am interested in trying right now.
Someone else told me I should definitely get the PICC line placed no matter what, that this is very hard to get and I should get it put in. If he decides not to treat me I could tell him I will take responsibility for it and find a different Dr. to prescribe for it.
What do you all think? Please?? I am very short on time here? I only have til Friday to cancel if I am going to.
I am going to see my GP today to tell him what is happening. This Dr. H actually knows both my GP and my RSD specialist. Why couldn't he have just been a regular Dr.? UGHHH
Thank you so much to anyone who takes the time to read this and to help me with advice. I appreciate every piece of information given.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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posted
I would not get the PICC line put in if you are not going to use him as your doctor. What if you can't find a doctor to help you?
I am open to the idea of muscle testing, but I would not start an IV with a drug I was allergic to based on muscle testing alone. I would test it out first with a pill when I had a responsible caretaker around. If I didn't react badly to it, I would go slowly, not just jump into the IV.
That is just what I would do.
Posts: 984 | From US | Registered: Dec 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would find a LLMD that is highly recommended by other lyme patients. I would not get the picc line, as a new doctor may treat with orals and not IV's.
I'm sorry and don't mean to offend others, but this stuff is off the wall to me and I would not feel comfortable paying for those kinds of services.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I was worried and uncomfortable about the NAET so I went to my GP today, (whom I've been a patient of for over 14 yrs) to talk to him about all of it. He is a very close collegue of this Dr. and told me he really felt he would still treat me if I told him I didn't want to do the NAET.
He told me he would speak to Dr. H if I wanted him to and he even said that if Dr. H refused to treat me because of the NAET that he would no longer refer any patients to Dr. H.
So my GP called right then while I waited and it all turned out ok. DR. H actually apologized and said he never meant to make it seem like he wouldn't treat me unless I did the NAET and he would of course treat me for the Lyme without it.
And another good thing that came out of it was that my GP asked me if he could read the Lyme book I spoke to him about. So I am definitely going to get that to him.
My last hurdle is talking to my RSD specialist tomorrow and bringing him up to date on everything.
Oh yeah and getting past the nerves for actually having the PICC Line put in on Monday!!
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Anybody diagnosing penicillin allergies with NAET alone is not too sane IMO.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
That's good progress, but I, too, would be a little wary that this dr really knows enough to treat you effectively. If you have RSD, that is serious business; you need the best LLMD you can find that you can possibly afford and get to.
I'm not saying that it's not possible to get good treatment from this guy, but I would first want to talk to A NUMBER of patients who have seen him for Lyme, who are better or getting much better.
Better to be sure before you jump. Choosing your LLMD is an important decision with lots of implications. And the sicker you are, the more true that is. It wouldn't hurt to look into it further first.
Posts: 3771 | From around | Registered: Mar 2008
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