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Strange conversation with a Lyme site--Trav, you are going to not like this LOL

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Posted 5/4/2015 6:36 AM (GMT 0)
I talked to this lady yesterday. She is a volunteer from a Lyme site. She is the one that helped me find a LLMD 6 yrs ago. I was hoping she will help me find someone for my daughters now, since our LLMD won't treat children under 10. So, I told her I am doing herbs right now and she wouldn't listen, she kept saying herbs don't kill bacteria and I need abx. I told her that the herbs helped us, but no way I could convince her, she kept saying only abx kill bacteria and I can do some herbs, but not only herbs.

She didn't know anyone that will treat children in our state. She said she knows someone in MD, but that is 5 hours drive each way. Good thing I am on this forum. It is too difficult to drive 5 hours each way. We never travel more than 2 hours away and that is enough challenge with 4 kids, as it is.

So, everyone that calls her, will be deterred from herbal protocols, that's for sure... That's terrible...
Posted 5/4/2015 10:04 AM (GMT 0)
Wow. I'm really sorry, Simela! I'm glad you know enough to know she's being totally dogmatic in her way of thinking. People have gotten better on abx, from herbs, from Rife machines, from PEMF machines... and this is by no means an exhaustive list .
Posted 5/4/2015 11:21 AM (GMT 0)
Very interesting Simela... Is this lady healed and stayed healed using abx for a considerable amount of time? Or is she still taking them? Anyway, very sad that this lady is an example of a person who is not capable of thinking "outside" the box.

Too bad she doesn't know that abx are made from simulated plant material (yes, herbs) mixed with fillers and who knows what else? I would ask her if she knows the ingredient list of the popular antibiotics used to treat lyme, bet she doesn't know....

As blue said, I'm also glad you know better!!

Denise
Posted 5/4/2015 12:04 PM (GMT 0)
Well, you're definitely right!! It shows how little she really knows about healing from these infections. Seriously, why not give people EVERY opportunity to heal? I would have never healed - either time!! - if I had a mind set like that lady!!!

I'm with everyone else - I'm glad you know better!!!
Posted 5/4/2015 12:19 PM (GMT 0)
Hi Simela,

First, I'm curious who this other person is...she sounds familiar to me. There was someone on another site's message board who was very helpful and encouraging to me, but then at the same time was very, very persistent almost to the point of being aggressive. I found an LLMD and she emailed me many times asking how it was going, whether I trust my doctor and if not, she can tell me about other doctors. I told her I like my doctor, and she kept implying that I should be very dubious of my doctor (not even knowing who she is) and keep getting multiple opinions until I find someone I can trust. I told her I have no reason not to trust my doctor, but thanks, and she said that's good but insisted via a couple more emails that I really should be cautious and careful and keep getting more opinions from more doctors until I am satisfied. It was so strange to me...she was really helpful and supportive early on but then seemed to be working hard to make me paranoid about the treatment I was getting. I ultimately stopped communicating with her because every conversation became so negative and doubt-inducing. I haven't even really had a chance to find out whether the treatment protocol my doctor is using will work in the long run, although it appears to me working...but this person on the message board seemed certain from the first appointment that my doctor is not to be trusted. Meanwhile, a friend of my sister who has Lyme and who recommended the doctor has been in "remission" (symptom free) for many years...so I am inclined to trust my sister's friend. Plus, I have never in my life had a more compassionate-seeming and knowledgable doctor.
Posted 5/4/2015 12:23 PM (GMT 0)
That's why it's important to always do your own reading and 'research', although we are no doctors.
I myself tried 15 months of oral abx, 1 month of IV abx, 18 months of herbals.

Everyone has his/her own health history, coinfections, infections, mutations, etc... she doesn't really beat around the bush...
I wonder how long she was sick before she started treatment...

Marie
Posted 5/6/2015 7:10 AM (GMT 0)
She told me to call her today, but I didn't, LOL

It's unfortunate that she is so set in her ways and people that won't find this forum and are looking for local Lyme Disease sites and support groups will run into her. I really don't know the details of her Lyme and co, I'm sure she told me last time, but I forgot.  We talked probably over 10 times when I was sick, 5-6 yrs ago, but she told me her grandaughter was treated with 2 abx for Lyme and Barto because most people are infected with both around here, she claims.

Americanlymie:
Yes, it sounds like her LOL She has an opinion about each doctor. Are you in PA or NJ by any chance?

Post Edited (Simela1) : 5/6/2015 1:13:28 AM (GMT-6)

Posted 5/6/2015 9:18 AM (GMT 0)
I'm in DC, actually, and my doctor is in Virginia.

I'm a little torn about the person I was referring to earlier. I was on another website's message board and she sort of took over the conversations and started emailing me privately to tell me I owe it to myself to find an LLMD and rule out Lyme (or rule it in). She was sure I have it, and she was right, and I'm grateful for her urging.

But then while I was herxing terribly I wasn't active online and she kept sending me messages and ultimately questioning the competency of the doctor I had just met--and I didn't tell her who the doctor is, so she had no reason to do that. It bothered me. I posted a couple more questions to the public boards on that site and always ended up with not any explanations, but rather direction from that same person. So I abandoned that site when I found this one.

In the end, I'm very grateful for the info she gave me and glad that she urged me to find a doctor. But her zeal and cynicism became counterproductive quickly. My goal is simply to get well if possible, and to learn along the way and also make connections with wonderful people like you as a bonus. I have no interest or energy in identifying every doctor on the planet and conducting judgmental interviews with the preconceived notion that they are all incompetent scammers. I am lucky I found one who seems to really care and seems extraordinarily knowledgable. So I am going with it and discouragement from someone who doesn't know me or my case or my doctor is just bad juju.

Post Edited (Americanlymie) : 5/6/2015 3:21:48 AM (GMT-6)

Posted 5/6/2015 4:44 PM (GMT 0)
" I am lucky I found one who seems to really care and seems extraordinarily knowledgeable." YES!!! Congratulations!! Liking and trusting your doctor is very important, and I don't believe that anyone can really know every doc that treats Lyme.

And we're glad you found us too!! :-)
Posted 5/6/2015 6:49 PM (GMT 0)
I went to see "Under Our Skin" a week or 2 after my daughter was diagnosed and afterwards, I talked to a few about it and one of them came up to me later and told me I should get her on ABX right away and that herbals and other alternatives wouldn't work. So that left me more worried about my daughter and struggling with what treatment to seek out for her. I joined my local support group (not the one I go to now) and she was the head of the group. There were only 3 or 4 others there and the whole time they talked about ABX and IVs, etc. Nothing on herbals or other alternatives. So I quit going and just searched the web for people who healed without ABX and felt more comfortable about the whole thing. My current support group has many who used alternatives, so it has been a big help.

My brother just rolled his eyes after asking if my daughter was on ABX and I told him she wasn't. He's not very open to alternatives. He hasn't had any serious health problems either.
Posted 5/7/2015 12:08 AM (GMT 0)
In my case, my conclusion is beggars can't be choosers, and do what works. If antibiotics work, I'll use them. If they don't, I'll use anything else that does. If there is any known treatment for any of this, then no one should have to live the way so many Lyme patients do. Closed minds don't open doors.

I've used more cliches in this post than I've used in the past five years. ;)
Posted 5/7/2015 5:26 PM (GMT 0)
I agree - I was ready to throw the kitchen sink and everything else I needed to in order to heal.

In my opinion, we each require something different anyway, it's not such a stretch to believe that some of us may need something very different to heal. I used Traditional Chinese Medicine for balancing out and supporting my body functions while I was healing the first time around, and I seriously doubt anything else would have worked as well for me - but that surely doesn't mean that we all need to use TCM. :-)
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