This is topic My life changing day at the LLMD in forum Medical Questions at LymeNet Flash.


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Posted by Clint31 (Member # 16420) on :
 
Today I visited an LLMD for the first time in Cleveland. I wanted to tell the story, as it is a story of hope and a feel good story.

My visit started with a full questionaire of my overall health. It profiled not only me, but my family. They asked me different lyme disease symptoms on paper and asked me to rate them on 1 to 10 before meeting with my LLMD.

During meeting with my LLMD, she spoke of my troubles with lyme and the symptoms I listed. Literally everything I had learned on this board and from internet research; she said or went into without me bringing up. Talk about a breath of fresh air. This woman nearly had me emotional because she just KNEW everything about the disease. I did not need to inform her. She brought up how my body is fighting a war and my soldiers are wounded. That we would need to get my soldiers healthy to fight this war. She said my previous testing was completely incompetent and imcomplete. She said it was a miracle that I was even found my positive result for lyme. She said that looking at my blood tests from my previous doctor that I had a chronic infection going on. She talked with me about my symptoms and then pressed on about 10 different pressure points and asked me to rate the pain on a scale from 1-10 when she did. After doing this she told me that I have not only fibromyalgia but also chronic fatigue.

She said she was going to run a full battery of tests through IGENEX to determine which bands were positive, explaining to my dad and girlfriend information in which I already know. She said the resuults would take 3 weeks to receive from IGENEX. She also was going to test for co-infections and she mentioned babesia and bartonella and asked if I knew what it was. Because of lymenet not only did I, but I mentioned that is how I found her.

I gave more blood then I've ever given in my life. It was for the IGENEX lab. After that I was given an expensive IV bag of vitamin B12, B6, and B7 that took about an hour. She said it would really help boost my immune system but that I might feel badly tomorrow initially. This woman also talked in DETAIL about herxheimer reactions and explained them to my father and girlfriend, that what I had been telling them about Herxes was very real, and that I am likely to 'get worse before I get better', like we on here all know. Another breath of fresh air, she actually knew what a herx was and believed they happen.

She prescribed my ziphro, flagyl, and doxycycline. She took down my level of doxy from 400 mg a day to 200 mg a day. She also prescribed a TON of other supplements for me to take.

I am to go back in 3 weeks for the test results and to discuss improvements I guess. Finally I know I'm on the right track and I couldn't have done it with out the info from YOU all. Thank you for saving my life.
 

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Posted by h8lyme (Member # 11765) on :
 
I'm so glad to hear that you found someone competent.
 

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Posted by seekhelp (Member # 15067) on :
 
Me too. I hope you're on your way to improved health. I wish you the best.
 

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Posted by Keebler (Member # 12673) on :
 
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Clint,

After much anguish and 233 posts, I am so very glad to hear that you finally have a doctor.

Best of luck with your treatment and thanks for writing the long note. This should help others.

There is no substitute for experience - and you can focus on taking good care of yourself rather than having to figure this out on your own.


Cheers!


-
 

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Posted by AliG (Member # 9734) on :
 
Breaking up for neuro-lymies to read:

quote:

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Originally posted by Clint31:
Today I visited an LLMD for the first time in Cleveland. I wanted to tell the story, as it is a story of hope and a feel good story.

My visit started with a full questionaire of my overall health. It profiled not only me, but my family.

They asked me different lyme disease symptoms on paper and asked me to rate them on 1 to 10 before meeting with my LLMD.


During meeting with my LLMD, she spoke of my troubles with lyme and the symptoms I listed. Literally everything I had learned on this board and from internet research; she said or went into without me bringing up.

Talk about a breath of fresh air. This woman nearly had me emotional because she just KNEW everything about the disease. I did not need to inform her.

She brought up how my body is fighting a war and my soldiers are wounded. That we would need to get my soldiers healthy to fight this war.

She said my previous testing was completely incompetent and imcomplete. She said it was a miracle that I was even found my positive result for lyme.

She said that looking at my blood tests from my previous doctor that I had a chronic infection going on.

She talked with me about my symptoms and then pressed on about 10 different pressure points and asked me to rate the pain on a scale from 1-10 when she did.

After doing this she told me that I have not only fibromyalgia but also chronic fatigue.


She said she was going to run a full battery of tests through IGENEX to determine which bands were positive, explaining to my dad and girlfriend information in which I already know.

She said the resuults would take 3 weeks to receive from IGENEX.

She also was going to test for co-infections and she mentioned babesia and bartonella and asked if I knew what it was. Because of lymenet not only did I, but I mentioned that is how I found her.


I gave more blood then I've ever given in my life. It was for the IGENEX lab.

After that I was given an expensive IV bag of vitamin B12, B6, and B7 that took about an hour. She said it would really help boost my immune system but that I might feel badly tomorrow initially.

This woman also talked in DETAIL about herxheimer reactions and explained them to my father and girlfriend, that what I had been telling them about Herxes was very real, and that I am likely to 'get worse before I get better', like we on here all know.

Another breath of fresh air, she actually knew what a herx was and believed they happen.


She prescribed my ziphro, flagyl, and doxycycline. She took down my level of doxy from 400 mg a day to 200 mg a day. She also prescribed a TON of other supplements for me to take.


I am to go back in 3 weeks for the test results and to discuss improvements I guess.

Finally I know I'm on the right track and I couldn't have done it with out the info from YOU all. Thank you for saving my life.

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I'm glad you're getting help!
 

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Posted by HaplyCarlessdave (Member # 413) on :
 
Im happy to hear you have found a LLMD in Cleve. I wonder if you could P.M. me, by chance. I'm over it for now, but if I should get bit again, which given my lifestyle, is far from impossible, I do get to Cleve often, if you catch my drift... Thanks so much! (sorry I didn't see how to send p.m. ("private massage")... I had a great doc, but was very hard for me to get to.
DaveS
 

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Posted by Keebler (Member # 12673) on :
 
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Thanks, Ali.

that really helps.


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Clint,

There is another poster here from Ohio who just sent me a PM saying she could find no doctor in Ohio. Your note comes at a very good time for her.

I sent you a PM so that you might share details.


-
 

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Posted by Clint31 (Member # 16420) on :
 
PM's sent about the doc.
 

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Posted by Keebler (Member # 12673) on :
 
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Thanks so much, Clint.


How nice it will be someday when we have more doctors and people don't have to wait forever for expert care, trying to figure out so much all alone.


I'm glad that your girlfriend and your father were with you at your appointment to learn more. It's also good to hear that your doctor is educated in nutritional therapy to complement. Sounds like it will be a good fit for you.


You said: " . . . she just KNEW everything about the disease."


We deserve no less.


-
 

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Posted by Pauline (Member # 10000) on :
 
Clint, did you read Singleton's book on Lyme? It sounds very similar to what this doctor you saw said. We have to remember that if we make our bodies and immune systems strong we can beat this disease - many people have. I think we get discouraged and depressed because we feel badly and think we can't beat this bug and as a result eat poorly, stop exercising, don't take our supplements regularly... we shoot ourselves in the foot. I'm so happy you found someone positive who is helping you feel determined and able to beat this.
 

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Posted by kelmo (Member # 8797) on :
 
I remember the day my daughter met with a doctor like that. After over a year of garbage, we literally burst into tears of joy and relief.

Now, you can start your journey. Hard, yes, but forward!
 

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Posted by disturbedme (Member # 12346) on :
 
Yay, Clint. So happy for you.
 

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Posted by Clint31 (Member # 16420) on :
 
I'm a little overwhelmed at all the supplements and pills i have to take, but.... I am still excited
 

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Posted by Lymetoo (Member # 743) on :
 
That's what LLMD's do!!

Glad you were the happy recipient of excellent care! Hope it continues!
 

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Posted by sixgoofykids (Member # 11141) on :
 
I'm so happy for you Clint! And I notice girlfriend is used in the present tense, that's good news, too. Guess you won't be needing my daughter's picture, LOL.
 

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Posted by seekhelp (Member # 15067) on :
 
Clint, can you share the supplements your LLMD asked you to take? I'd be interested in hearing.
 

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Posted by Clint31 (Member # 16420) on :
 

quote:

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Originally posted by sixgoofykids:
I'm so happy for you Clint! And I notice girlfriend is used in the present tense, that's good news, too. Guess you won't be needing my daughter's picture, LOL.

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quote:

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Originally posted by seekhelp:
Clint, can you share the supplements your LLMD asked you to take? I'd be interested in hearing.

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Colostoferrin
CoenzymeQ10
Fibro Calm
Mitotone
Opti-Epa
Ultra Preventative X


if you want me to elaborate on any of them just ask me
 

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Posted by seekhelp (Member # 15067) on :
 
I'm only familiar with Co-Q10. I'll look up some of the others. I can't afford to buy anymore supplements, but I'm always interested in learning.

It gets hard to afford so many of these supplements when a disease already makes you unable to do your career. It's a double whammy.

I'm always amazed so many on this forum can pay for what they do.
 

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Posted by Clint31 (Member # 16420) on :
 
I did not buy any of the supplements and will probably only buy colostoferin. My mother actually is in the health supplement business; she is going to get me her companie's version of all these supplements.
 

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Posted by seekhelp (Member # 15067) on :
 
Clint, I reviewed all the supplements online. They sound very interesting. That LLMD must really be focused on improving the mitochondrial system.

I wish I knew someone in the supplement business to weed through the "hype." There are so many supplements out there and I never can tell if docs are overprescribing them at times.

Having a LLMD who practices both conventional and herbal / supplement therapy seems to be of great value. I imagine there are VERY hard to find and quite costly.

It does seem like you need both to conquer this disease. I am concerned about my ability to release toxins. I'm starting to believe my lymph nodes are swollen leading to neck / jaw tightness.

I am going to PT where they perform lymph drainage therapy. They say mine are so congested and my liver seems inflamed too. I don't think I'm going to get the de-tox information I need from local doctors. I guess I need to learn as everyone else does on this forum.
 

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Posted by Hoosiers51 (Member # 15759) on :
 
Clint,

I'm really happy for you......!

Keep us posted!


 

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Posted by bettyg (Member # 6147) on :
 
clint, finally relief!!


please pm me with the complete info on this llmd; i definitely want to make sure we have this info on our lists ok!!


not sure how many pills you are taking for prescriptions and supplements, but if it's alot and you need weekly containers to put them in, check my newbie package link for my detailed post how i handled that. i believe i was up to 20-22 daily!! so confusing until i got them organized.
 

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Posted by METALLlC BLUE (Member # 6628) on :
 
Excellent Clint, that's exactly what I was hoping she would do. She's been added to the list and I included your patient report from this post.
 

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Posted by luvs2ride (Member # 8090) on :
 
Clint,

It feels wonderful to have a doctor validate your illness, doesn't it?

I hope you will embrace the supplements and learn how to get nutrition from your diet. Nutrition is the foundation of our healing, much like the foundation of a house. Without it, the house won't stand long.
 

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Posted by David95928 (Member # 3521) on :
 
Clint, it's good to hear you are making headway with your situation.
Dave
 

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Posted by kylasrain (Member # 12031) on :
 
Hey clint,

I had the same type of appointment with the same hat result last June! It was awesome!

We have a long road ahead of us, but its nice to see some light, eh?

I was overwhelmed by the supplements and pills to take and had to write a long schedule that leaves me weird eating and no eating times, etc. Its worth it, right?

I started the antibiotics with the supplements last friday 9/5 and yesterday was so sick I couldn't go to work (teacher!) I'm waiting to find out if it was allergic or herx 'cause it was pretty scary...

Good luck with everything and keep us posted! Perhaps we'll be herxing our way to better health together:)

Kyla

PS Take care of your tummy. All these pills take their toll pretty fast.
 

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Posted by Lymetoo (Member # 743) on :
 
Clint... Your PM box is full!!
 

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Posted by AliG (Member # 9734) on :
 
I just wanted to note that some people find it helpful to add in only one new supplement at a time and wait a few days between additions.

That way, if you seem to be having a reaction to one of them, it's easier to isolate the offender.




 

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Posted by sixgoofykids (Member # 11141) on :
 

quote:

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Originally posted by Clint31:

quote:

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Originally posted by sixgoofykids:
I'm so happy for you Clint! And I notice girlfriend is used in the present tense, that's good news, too. Guess you won't be needing my daughter's picture, LOL.

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For the time being I guess.... haha. She drove her just for the appointment from NJ. It was sweet of her I suppose.

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It is sweet. I'd tell her that now that she knows what this entails, she needs to be with you through it or move on. Make it clear that coming back after you're well after abandoning you when you were ill is not an option. Just some motherly advice from an old lady, ROFL.

BTW, I second the suggestion of waiting a couple days between starting anything new. Otherwise if you have an allergic reaction, you won't know what caused it. Most of us learned this the hard way.
 

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Posted by kelmo (Member # 8797) on :
 
Just a word of advice...take or leave it.

quote:

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I'm a little overwhelmed at all the supplements and pills i have to take,

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