Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It is so sad that so many people waste time and money going to doctors we know are not going to help them, have insulted others, have been jerks and are NOT there for Lyme patients.
If you know someone you would not recommend (NOT a LLMD) and would want others not to waste time with, please let me know.
I will put them on a list that I've started- public for all to see- and use their own words to show they are not the ones sick patients should go to.
In other words I can not do it simply because you think the doctor is a jerk even if I believe you and want to.
BUT- if you can do a search online and find me a quote of theirs that will show others how they operate or what they are doing that you don't like, we can use it.
For example- for someone now on the list who publicly came out against treating Lyme patients and/or is an IDSA idiot.
Massachusetts
**Quote- July 2016- Christina Hermos, a pediatric infectious disease doctor at UMass Memorial Children's Medical Center, wrote to lawmakers, "Not only is the use of long-term antibiotics contrary to the best evidence about Lyme, but it also puts our patients and community at risk for the very real risks of unnecessary antibiotic use."
Hermos said only a small number of doctors prescribe long-term antibiotics to treat Lyme disease, and it can cause harmful complications, such as infections, allergic reactions or drug-resistance to other diseases.
posted
I've been with one of these since March. I was delighted to find a LLMD that took my Medicare and Medicaid. Glad to have one that RXed me 3 months of PICC line Rocephin and intravenous immunoglobulin. I was referred to them via a Lyme association. The first red flag was when the nurse said, "There's a lot of misinformation out there [on the internet]."
Actually there's not if you're well read and know what/how to research. A few weeks ago I realized they are NOT ILADS but are clearly IDSA.
So, 3 months of Rocephin. Then Doxycycline 100mg 2x a day. Note: 100mg Doxy is NOT a therapeutic dose. I asked, was told, "Well, by now you should be cured so the Doxycycline is a prophylactic." Huh???
I asked about ABx cocktails:: "We don't do experimental." I asked about Persister cells, biofilms and cysts. My question was dismissed, twice, almost rudely the 2nd time.
I knew that if I pushed it they would respond to the effect that they have many patients on their waiting list that would Love to be on Rocephin, so there's the door. No Igenix test, lucky to show a few bars on the Western blot. Also not of the "legit" labs run confections panels.
Today the Dr says, Your Lyme bars are gone, so... I said: I not only still feel bad but have relapsed. A: Oh, then that's CFS or FMS. You need to look at a different doctor. We don't treat that. Then why is my CD57 still reading below 200? You're the ones that run that test so Why?
I feel shammed. The state Lyme person hasn't answered my email from 2 weeks ago ( granted, they could be on vacation) so I'll write the Nat'l Lyme group next.
I guess I should be glad that my Lyme titers are down. That's the least I deserve after 3 months of PICC line, hair loss, insomnia etc.
OTOH: I was recommended a homeopathic down here. He had treated a whole family for Lyme who commuted in from out of state. The Homeopath found in me: the MTHFR snag + low Glutathione, Borellia- still there, Babs, Ehrlichia, Toxoplasmosis. All our viral melange, and a few other things. All with his Vega machine instead of the tests the IDSA Doc shoulda found.
The Homeopath told me that in a month I should feel like exercising gradually, it should be gone in 6 months- then - I guess- 6 more to keep it repressed.
I am so angry over Doctors that that our desperate disappearing tens of thousands of $$$. And instead spend the whole time nibbling away at the edgesnofbour sickness.
I tested positive for high Lead and Mercury 8 years ago. Did ANY of my 3 previous LLMDs do a chelation protocol? No, I'm doing it myself NOW!
It's just not right. So unethical.
Apologies for not breaking this up more.
-------------------- Lyme: 1991 DXed: 2008
'Do not go where the path may lead; go where there is no path and leave a trail.' Emerson Posts: 45 | From Georgia | Registered: May 2012
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I'm sorry Beloved...
That is so sad to hear! And disgusting that this stuff keeps happening! Over and over again to good people.
Let's say you are an electrician, or a weekend camper, or a waitress, a pilot or a secretary-- none of which requires a medical degree.
If WE can all figure it out, why can't they? UGH!
If you'd like to give me a head's up on who that was I can check out info to see if they can be listed on the bad doctor site.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Beloved,
Excellent observation you make that may serve others. We hear this so often and I've never had a good a reply as you do. Thanks:
You say: " . . . The first red flag was when the nurse said, 'There's a lot of misinformation out there [on the internet].'
Actually there's not if you're well read and know what/how to research. . . ."
(end Beloved's excerpt)
So sorry for your ordeal. It's been a sadly common experience for many who are first delighted that a doctor takes them seriously & they get started with some serious treatment - until . . .
the "LLMD" turns out not to be that at all, just an aberration in the twilight zone between the worst and the best where middle ground is really quick sand. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
It really is sad. We don't want to have to be well read. Down here there are only 2 or 3 Drs that actually treat Lyme with antibiotics.
One's 1st appt is $700- did her for 3 years, no improvement. Another stopped my appt when I said the L word. Says she doesn't treat Lyme with Medicare, her 1st Lyme appt is $400 then $85-$235 depending on what's done. Didn't go back, had a bad feeling abt her. And BTW, I said both Lyme and Medicare when I made that appt!
Too bad I'm on Medicare & Medicaid after spending $80,000 on treatment. Too bad people still sick say $$$$ IVs don't help. Too bad 3 LLMDS in a row did not check for MTHFR or do the heavy metals chelation for the Lead + Mercury I tested positive for. Roster says Don't treat yourself, work with an LLMD. But what are we left to do???
I'm grateful I invested in a Hyperbaric chamber + Rife machine while I still had money.
My last LLMD hates ABx, wouldn't RX them. Had no problem RXing IVs not covered, or boutique supplements of proprietary blends. Suggested I get a brain mapping protocol. At $13,000 for the treatment series??? He actually said, "Don't you have people who can $$$$ help you?"
( My siblings who think I'm a lazy welcher (in spite of my Lyme positive tests) think I'm not seeing "real" doctors. But what's left? And what other options Are there???)
Dr #1 never tested for Lyme. After 4 years + tens of thousands he actually said, "Well, there are many directions you can go in..." I thought, This guy doesn't have a clue! He's like shooting darts in the dark!
Dr H says that when his patients are treatment resistant he does heavy metals chelation. And we know the MTHFR Thing treated can improve progress. That being fairly new, why didn't Dr #3 do this? It would have been a quick fix!
I'm shifting to Buhner herbs and this homeopathic seems very promising. He said 10 years ago Lyme was 30% of his practice, now Lymers are 50%.
Sometimes I feel like the old John Belushi diatribes from the old SNL news, where he gets so wound up he has a conniption and ends up writhing on the floor. Or Peter Finch's character from Network where he yells, "I'm mad as hell, and I'm not going to take it any more!"
I hold the CDC responsible for the countless deaths of Lyme victims from mismanagement, misdiagnosis and death by self determination.
I envision a cartoon of these guys congratulating each other for "curing" Lyme, while standing on a mountain of bleeding bodies. At the same time in the cartoon are the other Doctors such as Dr C + Dr H standing in a corner rolling their eyes.
'Do not go where the path may lead; go where there is no path and leave a trail.' Emerson Posts: 45 | From Georgia | Registered: May 2012
| IP: Logged |
posted
I read Dr H's book and I want to cry. Where are these medical artistes that fine tune their protocols to get us better, even recovered? Where are these doctors that want to work with us to get us better?
And not the, "Sure, I can get you better- how much money have you got?"
I've had Lyme disease since 1991, 25 years now. I've soaked up a lot of cynicism towards doctors.
Has anyone seen the Chris Rock bit- "Medicine is Money!" "AIDS? The last thing medicine cured was Polio and that was before I was born! Medicine is Money!"
Gads. No wonder we're turning to Homeopaths and herbs.
'Do not go where the path may lead; go where there is no path and leave a trail.' Emerson Posts: 45 | From Georgia | Registered: May 2012
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
The id duc that said i had a false positive also said igenix will find lyme in anybody " maybe everybody has it and the doc are so bizzy enlarging parts and regrowing hair ...they are missing an epidemic and they are already zombiefied !
Where do i put his name tc ?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Could they be DUCKS? ??????????????????????
Quack Quack Quack!!!!
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I think about this all the time. I am so pissed off at all these doctors I went to see. One frustration is that I'm paying for insurance to see these people who are really not curious or invested enough to try to figure out why I went from healthy to homebound in the space of a year. We're supposedly paying to see these people who are educated and enlightened. I saw disinterested, comfy morons blinded by fake technology.
But...it's not good for me to dwell on this, so I try not to. All the while wondering if there is someone I could ASK to test me seriously for parasites, EXPLAIN why I have a cyst on my adrenal glad, INVESTIGATE the cause of my gastritis, and test to help me figure out why my neck and shoulders barely work.
Basically any doctor in the Chicago area main medical networks - don't bother.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
There is a huge disconnect between doctors and the TRUTH about Lyme. In our experience throughout the decades I am convinced it is purposeful...and I use the word conspiracy without hesitation.
Two doctors who treat Lyme that we have gone to and one who is our Dr. now, have been investigated for bogus bull...one is/was jailed convicted for tax evasion...ya, right...
You see how it is...even IF you can find a good LLMD, the powers that be will try to destroy them.
Fear is a powerful tool...it serves a purpose and there are also powerful people who wield their ignorance, deception and self-serving agendas with aplomb.
And of course ego is another snare that doctors easily fall into.
Denial...denial translates into denying the patient...their self...their worth...their very being and that does the utmost destruction to us as humans.
We are shamed...think about that for awhile...we are SHAMED...for having Lyme and in my case for wanting someone to step up and save my daughter...to take it seriously...to take us seriously.
Bad doctors...there.are.many.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I was invited to a patient advisory group because of my frequent flyer miles pre dx ...and is it worth my time to point out the flaw to the machine that makes the bs pancakes ? Am i falling on deaf eara would i be endagering the people who are helping me ...i just want justice for the doc that refuse to treat me ......fat chance huh?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
YES.
Dr. B, Illinois.
This is one of the only "treating" Lyme docs in the Chicago area. Since I was too sick to really figure out how hard this was going to be in the beginning I made an appointment with him as my first choice since he was by the far the easiest to travel to.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I can't tell you how many bad ones I've had.
comments about not really being sick, somatization disorder, marriage, being white, female, Bored, looking for attention, big boobs, you name it, asked if I understood english...egads
I've heard it all. I've been yelled at, cursed at, had files thrown at me. put in with people with active diseases with no protection, been bruised, abused, you name it.
professionals....my rear...I've met more professionals at the local costco.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
This thread makes no sense to me. I just had my post edited because I am not allowed to criticize LLMDs but the thread is inviting us to talk about specific bad experiences with bad doctors.
it's just as illogical to protect bad LLMDs as it is to protect IDSA docs. They both offer shoddy uninterested treatment but the difference is with a bad LLMD you have to pay out of pocket.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
posted
When someone asks for feedback about a LLMD, it has to be in a pm, not on the open forum. Tincup asked for others to let her know, but it has to be done in a pm.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
OK faith. Just so pissed at that guy. At all of them really at this point.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
At the same time, Jordana and others, please remember it's better to get on with it and get to a good one who will help you heal than stay stuck with any bad ones.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
...and be sure to choose LLMD's with proven track records .. ask PATIENTS who is the best ...
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Part of the problem though is that you have to weed through the bad reviews for yourself. Everyone who's gone to a doctor and is upset isn't cured yet so you have to figure out whether the patient is pinning way too many hopes on one person OR if they really do suck.
This, ahem, doctor that I went to has had a trillion complaints in other circles but I ignored this mostly because I was desperate and can barely travel.
It took almost a year to realize...ok...yeah...
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
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!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic