posted
One of my doctors is a young naturopath. He has his entire career ahead of him. All chronic illness patients (FM/CFS) are referred to him because no other doctor in his facility wants to be bothered with hard to treat patients.
I have been seeing him for about a year and a half. When I was later diagnosed by an LLMD with Lyme Disease and Babesia Duncani, his response was you do NOT have lyme disease. It is very over diagnosed. Not reliable, etc. He tested me(at my insistence) but through Quest (not my choice; his). Of course it was negative.
For him, that was THE END of the subject of lyme.
It has been a HUGE struggle with him. I am Igenex positive for Lyme and Babesia Duncani.
Prior to the issue (dispute) over lyme, he was very supportive to help me with any standard lab tests. However, that changed after the dustup over lyme disease.
It had reached the point where I was ready to consider stopping service with him. A difficult decision because his facility takes Medicare (under supervision of M.D., neurologist).
At one of my recent appts, he told me about a patient of his who has Bell Palsy stroke symptoms and that she was diagnosed through Mayo Clinic with a variety of things, including Mitochondrial Disease/Disorder. He uses her symptoms to compare to mine, and says he thinks I have Mitochondria Disease/Disorder. The differing symptom is she has Bell Palsy like symptom; I don't.
Her Bell Palsy like symptom immediately made me think of Mandy, the lyme patient featured in Under Our Skin. I didn't say anything, just listened to what he said.
I later told my husband on the way home, I am going to try to enlighten him one more time on behalf of this poor woman who I just know has Lyme Disease.
Two weeks later I went to my appt and "gifted" to him a copy of Under Our Skin. He rolled his eyes as I pulled it out of my bag. I am always buying and gifting learning DVDs to him. It feels like I have adopted him since I am old enough to be his mother.
I told him, I know you say you don't think I have lyme disease. This is not about me. I am giving you this and begging you to watch it on behalf the patient you told me about. For her sake, you need to do this please.
He reluctantly said ok, but I sensed his tone and body language said "when pigs fly".
I told him, "now, don't shine this on like you usually with the DVDs I give you. I am going to quiz you on specifics at my next appt and will know whether or not you watched it, and we don't want to go there do we...remember that Santa Clause is watching you!!"
I said it in a joking, but serious way. He takes my kidding with laughter like I am a Mom telling him clean your room cuz I am gonna look under the bed to make sure you didn't shove your socks under there.
When we left the office, hubby looked over at me and said, you do know he isn't going to watch that lyme DVD right? I said I know. I did my part. I got the information to him. It is up to him what he does with it.
Hubby said ok, I just don't want you to get too disappointed or expect he is really going to do this. You know how he feels about lyme. He has made it clear time and time again. Yep, I know.
Today was the followup appt. I didn't even bring up the DVD at all. Something seemed different with him. He said I have something very important to tell you. Scared me because I knew he had been looking at my Esoterix mold tests.
He said you know that lyme DVD you gave me? I said yes. He said I watched it that night you gave it to me. I said OMG I am so proud of you for watching it!!
A serious deafening silence fell. He said, 2 days later I had a patient who came in that I was able to correctly diagnose her lyme disease from a tick bite over a year ago because of that DVD. Thank you for being persistent with me about this and making me learn. He has her on ABX now!
He said I have recommended to 4 other doctors that they watch it. It has changed our intake protocols to ask on first appointments have you ever been bitten by a tick or lived in an endemic area?
I could have cried. This doctor is very young and has a long career ahead with many patients yet to come. Now, MAYBE they will get the right assessment and testing.
I just had to share this story with y'all. It was truly his "come to Jesus moment about lyme disease"!!!
He no longer argues or disputes that I have lyme disease. I think he feels horribly guilty that he didn't know, and that I went a year and half in treatment with him without proper assessment. I could sense that.
I told him its okay. It was meant to go this way. It was meant for me to stick this out with you so you could learn this and be able to help other patients. The work and credit is yours. You watched the DVD, had an open mind, and willing to admit you were wrong. That is huge, and you will change lives because of it, congratulations on turning the corner on what is a public health crisis. Now you have important insights that will distinguish you.
All I ask in return is not even an apology. You can thank me by sharing what you have learned with every doctor you know. Pay it forward.
He gave me a hug and said you know you really need to write a book about this journey when you are well, and you will get well. You are working too hard to find answers and with such determination. I hope he is right.
He says he has since identified 3-4 patients with possible lyme disease, but waiting for lab testing results.
Now, I am teaching him what I have learned about mold sickness. It was so funny because this appt he was writing every word down saying don't go so fast, what was that doctor's website again??
I think this guy has great potential to be a really good lyme and mold literate doctor.
I told my husband when we left, if it only helped one person to get correctly tested and diagnosed, then it was worth hanging in there and determinedly ensuring he finally gets it about lyme disease.
I can't explain all he needs to know about lyme or mold, not even close. I am still learning myself. But, I can give him websites, and the LymeNet link where he can read and learn from all of you who have helped me and others to learn.
He is very bright. He can successfully chart his own course from here. You can not "unring a bell". He will do the rest of the work on his own. I am sure of it now. Who knows he may eventually be one of our LLMD names on this board.
I had "gifted" 4 other DVDs on virals to him. He said, hey can I please hang on to these for awhile longer if you don't mind?
I told him, they are yours to keep; our gift to you to help you in your journey to learn and help others.
I just felt so good about this that I had to share it with y'all.
The real point of this story: Don't ever give up trying to educate your doctors!!!
It took a year and a half for him to come around to understanding lyme. And he had previously aggressively said no no no no lyme; very over diagnosed, etc.
I look forward to continue in working with him now. Not about my lyme or even mold. He isn't there yet. But, he is now willing again to help me with running any standard labs I want done.
And, he is now even willing to help monitor my IV supplements from my lyme doctors. All my LLMDs are 2 hours or more away. He is about 30-45 min so much closer for me. They can ship the compounded detox IV supplements to his office, and his staff will do the venipuncture and administer the IV. That is huge for me.
[ 05-14-2009, 10:29 PM: Message edited by: jam338 ]
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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bettyg
Unregistered
posted
jam, OUTSTANDING....activism at its best. educate, educate, and PERSISTENCE!
jam, would you copy your entire post here, and paste it to the SUCCESS STORIES at top of SUPPORT forum? we need to read things like this with all the drs. who are unreceptive, infectious drs., etc. we contend with daily.
THIS GIVES US ALL HOPE & PROMISE for more drs. to think outside the box.
thanks for asking him to PAY IT FORWARD!! YOU have really touched my heart tonight as tears roll down my cheecks!
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posted
WOW! That is a great story to wake up to. I am hoping to have an epiphany with my kid's pediatrician. Right now, I am settling for non-interference. I guess we just have to work "one doc at a time".
Lymepool
Posts: 170 | From New Jersey | Registered: Jun 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Wonderful news. I had given up on my MD whom I
thought knew me and treated me for the last 8 years
and who did not listen or help me. Very
frustrating, but
because of your perseverance I may just back up and
give it to him straight. Thanks for sharing.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Awesome Jam!! I'm so proud of you!!!! You have truly helped many new Lyme patients who go to see this doc with the invisible illnesses like CFS and FM!
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
jam, Great job! Thank you for your persistence. We need more lyme literate docs, that's for sure.
ILADS offers training programs for doctors. My LLMD sometimes has a doctor shadowing him during appointments. He has trained several ND's.
ILADS also has an on-line group for doctors. May I suggest that you strongly direct him to ILADS for his information. It is the best place for a doctor to learn about lyme once they are open to it. www.ilads.org
Also, contact your State group. They may be able to offer help towards a membership or some training for your doctor. I know there is money out there to pay for attending conferences for new doctor's in some cases.
Yeah jam!!!!!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Very gratifying. It's a huge victory when we can bring a doc over to our side.
Kudos to you!!!
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hip! Hip! Hooray!
Job well done!
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Thanks everyone! I am so proud of this young doctor. I can't believe he turned the corner about lyme disease.
He was definitely in the *other* camp. My appts were getting difficult with him. He was never rude like how some can get about lyme. He was just defiantly adamant I did NOT have lyme disease, despite having my Igenex positive lab results in his hands to look at. That is how defiant he was about it!
As someone else said, a picture is worth a thousand words. So, I thought ok, I am going to get him the Under Our Skin DVD. If that doesn't do it; then he is beyond my reach.
Then, omg he had a patient with undiagnosed lyme disease 2 days later; tick bite well over a year ago.
Because of Under Our Skin he knew how to properly diagnose this poor woman and get the right dang tests for her. And, then 3-4 more patients in just the 2 weeks since my appt with him!! Amazing.
Maybe this is the silver lining in my suffering with this damn disease. I believe everything happens for a reason.
Something brought me to this young doctor. He is not in my town. He is 45 min away. I never heard of him or the clinic where he works.
I ended up with a fluke referral to their clinic. He looks a lot like my nephew who I adore so there was a bond thing from the start. I even took my nephew's picture in so he could see the similarity.
Something compelled me to keep seeing him though he really wasn't helping me. Didn't know what was wrong with me. Refused to believe I had lyme disease. Any reasonable minded person would have stopped seeing him several months ago.
Something made me hang in there for a year and a half with him. I bought Dr. Cheney's videos, videos from the UK...took them all into him. Took RichVank's work to him. He seemed interested but really too busy to watch or read all I take to him. But, he did get himself signed up to go see a Cheney lecture in Carlsbad, CA last year. That was encouraging for me, so I knew there was a light in him that wanted to learn more.
LOL, he just didn't want to learn about lyme though. I must have just caught him at the right moment about it is all I can figure. The stars were aligned.
It actually happened after my appt where I initially forgot to take the DVD out to give to him. I think I just didn't want to go through the Lyme letdown with him again.
So, he took me back for the glutathione IV hookup with the nurse. He co-presnets workshops with her for their facility. I think her presence was a huge factor in all this.
Then, he popped back in later to make sure I was doing ok. The nurse, hubby and I were chatting up about life in general. He was between patients so hung around for a few and joined in the conversion.
I knew my moment had a arrived. His guard was down;) I motioned to hubby to hand me the bag. He knew what was coming and just smiled as he put the bag on my lap.
I told the doctor, oh I forgot to give you something, lol. Then, all the joking about about quizzing him later happened in the presence of this nurse----someone he works with every day. He was kind of pinned.
The nurse is a cutup and very sweet. I am sure she teased him about it with "you better get that DVD watched before she comes back or she is going to spank you". That is just the kind of thing it seems she would do so I think she might have been a factor in it.
When I get my next IV next week I'll have to ask her if she teased him at all about it. She didn't mention it all this week but there were other patients getting IVs this time so maybe she didn't mention because of them. Not front him off in front of patients, lol.
BettyG, I will try to post thread to where you said.
TerryK, thank you so much for telling me about the ILADS training for him. I really think he will go now that he has watched the DVD.
In fact this victory story is to the full credit of UOS DVD. I should change the title of this thread to include that mention. Had it not been for the DVD this doctor would never have been brought around.
It certainly wasn't me. I had been trying one on one with him since I first diagnosed by an LLMD last summer. I was just the catalyst to get the DVD to him.
I guess the lesson learned here is that if we can afford it, we should all get at least one DVD and give it to a doctor, and then ask him to pay it forward by giving it to another doctor.
Tell him/her I feel this is so important that I paid $40 for this for you. (I think the new ones might be more with the full feature options) All I ask is that you watch it. The knowledge in it will distinguish you from your peers and put you on the leading edge of knowledge about a critical health problem in this country.
If you aren't going to watch it (and I hope you do), at least give it to another doctor. That is all I ask. Just keep moving the knowledge forward in some way, any way.
A 26 mile marathon race starts with the first step, and then you keep moving your feet forward. That is all we ask is that the medical world in some way keeps moving their feet forward on this issue.
Don't let the DVD set on a shelf, keep it circulating. The next one I give out will be to my primary care doctor. He is also very young. These two docs are actually about the same age, very early 30s, maybe even late 20s. They have a whole career of seeing patients ahead of them.
I hope it will be life transforming for them and the patient's lives whom they help.
Here is what I have learned in my own personal journey to discovery of the puzzle pieces to my illness. The more I learn and the more I share about that to really help others to learn. I mean really learn, not just post a quick link to something, the more information that is being delivered to me about my own illness.
Whenever I do that, it seems that new very significant pieces of information comes to me about my illness.
I have been bedridden for the better part of 4 years. My husband bought me a laptop because doctors did not have answers about what was wrong with me. Just wanted to RX antidepressants and pain pills. Y'all know, you have been through your own personal journey with your illness.
When I got the laptop and got on health message boards I started finding pieces of my puzzle. The more I helped others, the more information would come back to me about something new I needed to learn in my own illness.
I would research that and not just apply it in my own situation, but go back to the board and fully share in a meaningful way what I had learned.
Then, the universe would deliver another thing I needed to know.
Following this process, in the past year I have learned I have lyme disease, babesia duncani, EBV, HHV6, CMV, thyroid imbalance, hormone imbalance, methylation detox block, mold sickness, candida, metals....the list is long. No damn wonder I am sick!!
But, I am finding my pieces only by reaching out to help others find theirs. That is how the universe works.
You will find your pieces much more quickly, if you are doing good for the betterment of mankind as whole with that which is delivered to you.
If you are using your discoveries only to advance your own health, and not help others to learn from it, then it will all come to you much slower.
Maybe this is only happening to me, but it is a very interesting journey. I try to find silver linings in whatever black clouds are raining on me. I have had plenty. There are days I want to just give up, and I feel like I can't go on another day with this. My life, my career, my family are wrecked from my illness.
But, I am determined that some good will come of this somewhere. I am not going to have suffered this horribly and it not help someone else avoid going through some of it.
That is why I did the mold thread. I am paying forward what I learn, not only to help others, but so more information on other missing pieces will be delivered to me about what else I need to address in order to get well.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
An open mind is the most important quality in a physician. It also is extremely rare.
Thank you for helping so many people you will probably never know.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
This is a beautiful thing.
Thank you for working with your Doctor with a hopeful attitude, and sharing the results with us. Not all Doctors will be responsive, but respectful hopefulness can sure go a long way with some.
I am frequently surprised by what gentle suggestion can sometimes accomplish, when it seems someone's mind is unchangeable.
posted
This is wonderful! Thank you for your persistence and concern.
My chiropractor (DC internist) is getting an education too. He recently heard a famous LLMD speak at a conference and when he returned, he told me all about the new protocol the LLMD is using. Now my DC is starting to do some testing and use the protocol with a couple of his patients.
I have shared all of my test results with my DC and have talked about all the treatments I'm doing in the last couple of years. He is very skilled at muscle-testing, so I have him check everything out for me.
That's a good idea to share the DVD. I may do that too. This doctor is a rare breed--one who hears hoofbeats and is already thinking of zebras.
Thanks for sharing the great news. Nutmeg
Posts: 386 | From WA state | Registered: May 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
This is so wonderful. I am so happy for his patients and future patients and also super happy for him. I'm so glad to see doctors who still have an open mind and are willing to think outside the box (even if they didn't want to in the begining).
-------------------- 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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bettyg
Unregistered
posted
jam,
even more and better news for you; this drs. office is involved in research studies directly w/dr. burrascano!!
we have an anonymous member who is involved in this!! so good things can be coming down the pikeway. exciting isn't it?
i was so pleased to learn this by pm which i won't share but thought this much was worth knowing ... many llmds are working to help us all!! **********************************************
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
This is just great! I am proud of both of you! Perhaps it is good that he is young.
When I had an MRI a couple of years ago the reading radiologist MD came in to talk to me ahead of time. We were talking about lesions and I said you know Lyme causes these right? And he said oh yes I'm learning all about that. It was also a young guy. Maybe they are more likely to accept the new info and parallel it to the AIDS epidemic in the 80s when they were kids.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Betty, I think you may be referencing one of the other doctors (LLMDs) I have consulted with. Dr.G is not the doctor I was referencing in this particular thread. Unlike this doctor referenced in this thread, Dr.G is a very literate doctor in lyme and mold sickness.
Yes, DrG is involved in an exicting new research project;) More news to come on at that when they are ready to say more publicly.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
jam, thanks for additional info; we've talked privately; nice to read more, and hey, i can't keep 1 dr. straight from another! lol 39 yrs. neuro lyme at its best!!
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it can be very discouraging to keep pushing and making people aware....
it can be uncomfortable...a huge effort...time...energy..
...which most lymies don't have enough of...
when I get discouraged I think of the many kids that are suffering their childhoods away...so unnecessary ....makes me and then ...
they need us to advocate for them.....
Thank you for doing what you did... The ripple effect will be huge.......
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
There may be some materials from this recent program:
This physician training program will train the next generation of physician-scientists who will be future leaders in the treatment of Lyme and Associated Diseases.
The ILADS and Turn the Corner Foundation (TTC) Physician Training Program, a groundbreaking project vital to fostering excellence in care for Lyme disease patients, directly addresses challenges in properly diagnosing and treating Lyme and other tickborne diseases.
The Training Program provides medical and other healthcare practitioners the opportunity to study with Lyme-literate healthcare professionals. Through this experience, participants will develop the skills necessary to properly diagnose and treat Lyme disease.
These professionals will be able to return to their community with enhanced skills and the ability to provide superior care to Lyme patients, improving the health and quality of life for those that suffer from the most debilitating effects of Lyme disease.
Faculty
A dedicated and collegial faculty offers individual clinicians a hands-on education with physicians who are experienced in treating thousands of Lyme disease patients.
. . .
Applications
Interested applicants for a one to two week training program with our physicians can obtain an application by email at [email protected] or contact Barbara Buchman, Executive Director, ILADS, P.O. Box 341461, Bethesda, MD 20827-1461, Phone: 301-263-1080, Fax: 301-263-0776.
There is a stipend available for a clinician to train with a designated preceptor. After the training by the preceptor the trainee will fill out a brief report of what they learned and how this will affect their future practice.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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