posted
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.
posted
I'm so glad to hear that you found someone competent. Posts: 158 | From Santa Monica | Registered: May 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Me too. I hope you're on your way to improved health. I wish you the best.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Breaking up for neuro-lymies to read:
quote: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.
I'm glad you're getting help!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
posted
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
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Thanks, Ali.
that really helps.
-
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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."
posted
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.
Posts: 144 | From Connecticut | Registered: Sep 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
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!
Posts: 2903 | From AZ | Registered: Feb 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yay, Clint. So happy for you.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Glad you were the happy recipient of excellent care! Hope it continues!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Clint, can you share the supplements your LLMD asked you to take? I'd be interested in hearing.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote: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.
For the time being I guess.... haha. She drove her just for the appointment from NJ. It was sweet of her I suppose.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
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.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
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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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
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.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Clint, it's good to hear you are making headway with your situation. Dave
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
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.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Clint31:
quote: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.
For the time being I guess.... haha. She drove her just for the appointment from NJ. It was sweet of her I suppose.
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Just a word of advice...take or leave it.
quote:I'm a little overwhelmed at all the supplements and pills i have to take,
You might ask your LLMD if you can start them one at a time so that you know if you have a reaction to one.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Haha, good advise since many know I posted the night before last with allergy/herx problems and was taking all the meds at the same time..so didn't know which one caused what!!
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Clint, this positive experience and good support is exactly what you need. I'm so happy for you. Hopefully things will continue looking up:)
Posts: 5237 | From here | Registered: Nov 2007
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