Hello everyone. Tomorrow I have a meeting set up with an "ID Doc". He's an infectious disease specialist who works at my local hospital and if I play my cards correctly, I may be able to help another physician who has been steered wrong by the IDSA's party line understand the plight of Lyme patients .
While he's not an ILADS doc, he seems to be somewhat more open minded than many and believes that "Somehow the disease has changed" over the years. He's seen increasing patients with Lyme, and symptoms such as bell's palsey and even Lyme and other co-infections found in spinal fluid. He is sure the disease has become more aggressive and it is harder for people to recover, according to a mutual colleague and very close friend that put us in touch (This person is an EXCELLENT general surgeon and wound care specialist, in Maryland, by the way. He does not treat for Lyme in any way, but he is quite Lyme "friendly")
Tomorrow's visit will be part personal consult and is "in the bag" so to speak - my insurance will not play ball with IVs of any sort without a physician who is connected to a legit hospital infusion center giving the "Ok", but I also have the chance to show him the error of the IDSA guidelines and other issues.
Sure, I can talk at length about say, cystic forms and Tindamax, but I need PROOF, provided in a concise manner and thus why I'd like to ask some of our more archival-minded posters for a hand.
I'd like some help in providing links to the sources (studies and more) that back up the following.. -Lyme treatment iself, ILADS protocols, multiple forms of Lyme (Cyst/L-form cell wall deficient), IGENEX testing versus regular testing evidence of continued presence even after IDSA antibiotics courses, and more. Pretty much anything that proves how difficult Lyme is to eradicate once it has a chance to get into the body, as well. The best, latest, well cited information possible. - Attorney General Blumenthal and the case against Wormser, Steer and the rest of the guys who made up the IDSA's protocol, how they were paid off by the makers of the Lymerix vaccine, and the judgment of the case. - Babesia/Bartonella and common co-infection info/overviews and studies - "Odd" or less known co-infection studies such as CPN, Mycoplasma and more - Viral issues, herpetic and otherwise, including recently discovered XMRV links
-The "GOOD" testing labs and WHY they are good. I'm pretty sure for instance, that he just uses Labcorps and Quest for everything. A list of comprehensive labs, their tests, and why the "normal" ones don't cut it for some things
I have pages and pages of bookmarks from all of the above, but I just thought someone here might have a more concise presentation that will save me from carrying in tomes and tomes of pages on the first visit. Just think about anything you'd show to a ID Doc to help illuminate him to why the guidelines he follows just aren't enough. Thanks!
Posted by Keebler (Member # 12673) on :
- I know you are coming from a good place but I am just so down on the idea that we have to educate doctors and bring them up to speed. I've shared much information with otherwise very nice and good doctors.
But, I have to say, they REALLY don't want this and it has even been used against me to show I'm some sort of gullible freak addicted to sharing mass market articles. I'm sure I can't refrain from posting a few links but, beware, when I've done this, they have just been put in my file. No one read them - at all.
I would simply direct him to the ILADS website and ask him to contact an ILADS member and read some of their articles, watch some of the DVDs of past seminars and then inquire about the education courses.
He needs to be learning directly from the seasoned and experienced ILADS doctors.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
Focus diagnostics is a good lab for testing HHV-6, EBV, Cpn and most other infectious pathogens.
ARUP is best for enterovirus.
Best, Timaca
Posted by METALLlC BLUE (Member # 6628) on :
This will not end well (most likely). I agree with Keebler. To create a "presentation" -- as though you were giving a college lecture, is extremely difficult. Even the best writers and most organized patients (Me), have been laughed at by "well meaning, open minded" physicians.
They're always open minded until the words "Maybe I have Lyme?" come out of a patient's mouth.
Your best bet is to direct them to the ILADS website, and or give them a phone number for the organization so they can be put in direct contact with physicians who practice.
There is no possible way to conscisely present the facts surrounding Lyme Disease in a credible way that convinces a physician who has heard (over and over) that Lyme Disease is not a chronic infectious disease. ILADS page has a conscise fact sheet (basic information), but no references or information is available to put it into context or provide the scientific evaluations of how they arrived at their conclusions.
Additionally, preparing all that information -- even if it was going to be useful -- in less than 24 hours is not possible.
Posted by seekhelp (Member # 15067) on :
I'd use the ID doc's services for hopefully a thorough evalulation and testing of all possibilities. If a patient has to educate a doctor on diseases, that's so very, very sad. Tell them write the check to YOU.
Last time I remembered, you are paying THEM for their knowledge, right? Sadly. we pay docs here sometimes for their script pad.
Posted by sutherngrl (Member # 16270) on :
I agree with Keebler and Seekhelp. You cannot educate "any" physician. And its not our place to educate them anyway. Its THEIR place to educate themselves and keep up with the changes.
Like Seek said.....we pay them!
I think you would just be setting yourself up for disappointment!
I have sat in too many non lyme literate doctors offices. They don't really want to know about LD! Even if they act like they do!
Posted by Lymetoo (Member # 743) on :
Speaking with ID doc tomorrow
That should be "oh so much fun."
Good luck with that.
(I think Keeb has given you everything you need. Is that right?)
Posted by Blackstone (Member # 9453) on :
Thanks for the links - that's a lot more organized than I am! The only thing I could really use is good data on finding tick-borne infections in spinal fluid through lumbar puncture. I have a number of figures floating around in my head as to its effectiveness (or lack thereof I should say), but I don't for the life of me remember where I read about them.
I know that it may seem an impossible feat, but as I mentioned before a very good friend and colleague set up this meeting so I owe it to him to give it my best shot to inform this doc. I know it is difficult, but we can't give up trying to explain logically and with great scientific backing why "The book" is incorrect on this specific thing.
I also personally feel that the kind of access I have and my "status" compels me to try and make these arguments so that others not part of the medical community don't have to. If this fellow is not as responsive as I'd like him to be, I can always go elsewhere to find someone to sign off on infusions or work on personal treatments, but not everyone has that knowledge or liberty.
Posted by Lymetoo (Member # 743) on :
Finding TBI's in spinal fluid has about a 20% success rate.
I don't have data on that. If you have time, you could look thru this link to see if someone posted that info here:
- I still doubt the doctor takes 10 seconds to seriously consider this. But, I admire you for trying. I've given up on all doctors that don't have the initiative on their own.
I had read finding lyme or other TBD in CSF (cerebrospinal fluid) is far less than even 20%. TBI can also mean "Traumatic Brain Injury" so I use TBD for "Tick-Borne Disease"
Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity.
. . . .
-
Posted by sparkle7 (Member # 10397) on :
Thanks for your work, Blackstone. Let us know how it goes.
There's also the issue of co-infections & parasites...
I'm sort of out of it today. Otherwise, I'd try to offer more help.
Posted by Tincup (Member # 5829) on :
Give a Maryland duck Maryland information... and studies done on Maryland patients... compliments of Johns Hopkins.
This Hopkins study shows 75% of people using the IDSA blood testing methods are missed! It is one of my favorites!
As for spinal fluid... not a good return rate either. They state... " Of the three CSF specimens [from Lyme patients], one grew B. burgdorferi, one culture had no growth, and one culture was contaminated and unable to be analyzed."
PS. Bless your heart for trying. I wish you well, but if the general trends are followed in this case as in so many others... I think you will be disappointed.
Posted by street129 (Member # 23472) on :
please keep us informed, this sound interesting. Posted by Keebler (Member # 12673) on :
- So, how did it go? I hope it was a benefit to you, one way or another.
-
Posted by Blackstone (Member # 9453) on :
Thank you all for your time and organization. Due to an emergency, my appointment was postponed until next week instead, so that we'd have the proper time to sit down and talk. Don't worry, I'll let everyone know what happens. Posted by Robin123 (Member # 9197) on :
Shoot - we were waiting with baited breath to see if you convinced him or not!
In the meantime, hey, really study your info and give this doc a run for his money next week!
Posted by METALLlC BLUE (Member # 6628) on :
Now you "might" actually have a chance. More time for preparation could help and you might strike a hit if this guy really isn't a douche.
Giving a copy of Under Our Skin can be useful for some. I did that and did find a few receptive doctors.
Posted by tanzi2u (Member # 9237) on :
The one article that I have seen that actually makes a non-believing doc think twice about the chronicity of Lyme is:
Comments: Regarding Lyme disease (LD) treatment recommendations, by David Volkman, Ph.D., M.D. Emeritus Professor of Medicine and Pediatrics SUNY, Stony Brook, NY, previously Senior Investigator with the National Institute of Allergies and Infectious Diseases.
(Essentially Volkman is one of the IDSA's own, and was a major researcher for them, who is calling them to task for misrepresenting and twisting the research to suit their pet theories.)
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