posted
I now have no doctor. I had been seeing someone for over 4 years who was treating me with everything else but Rocephin. Now as we were about to start it he has changed his mind. I am so sick right now and my husband is getting sick just watching this. How can a doctor who is supposed to help you do this? I am shocked. No one will even call me back.Has anyone else gone through this?
Posts: 61 | From Connecticut | Registered: Jan 2015
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I know ppl have had this happen
They will come along
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thanks- this is so unfair. It's not my fault that I am so sick.
Posts: 61 | From Connecticut | Registered: Jan 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- " . . . discharged by their doctor because they have been sick too long"
Is that what they told you?
As you replied on your other post in "seeking" that your calls have not been returned so it appears you've been dropped. But there could be a logical reason for calls (even the additional fax, etc.) not returned. I would not assume the plans are off.
And if the plan changes, he may have good reason and something even better in mind. Until you hear back from them, it's impossible to know, though. Scary and unsettling, though.
Find out from area support groups if something may have happened to close their office unexpectedly. All that cold & snow ? -
[ 02-12-2015, 07:32 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I had a infec doc tell me this. c ourse lat e r on I realized she was nuts.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see that you just posted this in your "twin" post to this one over in "seeking"
"Nope- just pick up a certified letter saying he is terminating me because I went to see another doctor which I did since his office wasn't returning phone calls. No reason to discharge someone. " (end quote by Mariel25)
Oh. Sorry to hear that. Wonder if they thought Rx would be doubled or altered and they could be held liable ?
If you explain that it was because you thought they dropped you when calls were not returned, maybe they will understand. But I think they should have called to ask you what was going on or explain why they may have been overwhelmed and behind on communication.
How very unsettling & curious.
Did the new doctor & their outlook seem promising? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The sad reality is that many docs give up on patients after 2 or 3 years if there is no significant progress made.
And unfortunately many docs do not seem to have well thought out policies as to who they treat with IV meds.
Hubby had several LLMD's drop him - actually when he was treating Babesia aggressively he went thru about 4 different LLMD's in a period of 6 months - this was during a time when he had 5 hospitalizations for fevers of over 101.5 So yes, docs can and do drop patients when they are very sick and the treatment runs into complications.
My personal opinion is that if the doc is not open to you getting a 2nd opinion from another doc then you are better off seeing someone else.
Hubby had an LLMD call out of the blue once and ask when was the last time he had seen a neurologist. He had been seeing the doc for a couple of years at that point. It had been a couple of years since he had seen a neuro - so on our own (the doc would never recommend a neuro despite multiple requests from us) - we made an appointment with a well known LLMD neuro.
Well the neuro suggested IV antibiotics indefinitely but the original LLMD would not write the scrips unless we scheduled weekly phone appointments which we could not afford. So we ended up getting our PCP to write the scrips for about 6 months until hubby had the first fever and then the PCP would no longer write the scrips.
The neuro had moved from Connecticut to California and we could not afford to travel there for follow-up. So we ended up finding another LLMD.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Mariel,
I sent you a PM.
Unfortuately, this has happend to me way too many times (4 times), although one of the times was not personal, the doc was moving to CA.
It's a very unfortunate occurence. Truthfully, it is illegal for a doctor to do that without sending you a letter, giving you a month's notice, and referrals to other doctors.
But I wouldn't call the doc on that, as it would be quite unproductive. If they aren't willing to treat you for whatever reason, you are better off without them.
But that is cold comfort when you suddenly have to shop around for a new LLMD, which is a very big deal.
I don't know your history, but it sounds like maybe you need someone to rx IV meds. I hope you have far better luck going forward. Do your due diligence before deciding who to go with, as it's such an important and expensive decision.
This illness complex is hard enough without having to endure this on top of everything else.
Bea certainly knows the score all too well, as you can tell.
Posts: 3771 | From around | Registered: Mar 2008
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Mariel, if the doctor left you, it is better to let him go.
He has no clue how to help you anymore, and would like to concentrate on easier cases, not on chronic difficult cases like ours.
Let the guy dismiss you, you are losing your time and money with him.
If he knew and believed he could help you, he wouldn't have dismissed you, right?
No one wanted to treat me either. I never ever had seen any conventional doctor since the last one dismissed me sometime in 2006.
I'm glad I never needed any of these hopeless doctors and hospitals. Now I am dumping them, no way they will touch me or do anything on anyone of my family (unless we break a bone or have a car accident).
Look for other help, for doctors who are really interested in healing CHRONIC conditions. They are the brainier ones, with some real interest in healing, not only in medicating.
Insisting for him to treat you will bring you nothing. Just publish his name here and there, and recommend people NOT to see him. If you force him to treat you, what kind of help would you expect from such a professional?
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Have taken this too personally and feel sick to my stomach. How can someone do this? I have lost faith in doctors especially when I did nothing to deserve this.
Posts: 61 | From Connecticut | Registered: Jan 2015
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I've actually been yelled at and told never to come back...so yeah i've had this happen more than once...
sad to think they get away with it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Yelled at? I'm so sorry for you.The sad part is the doctor was sick with this too so he knows how bad it is.
Posts: 61 | From Connecticut | Registered: Jan 2015
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posted
Yup, been told that I was wasting Docs time. At least your doc recognized you were sick?
Unfortunately, I don't think every doctor is equipped to handle this disease. Some give it their best shot, and if you don't respond, they are at a loss.
What do you do when everything you throw at at your patients doesn't work? I have seen some of the best doctors, and even I have them stumped. Sometimes, we go down a path that is a dead end.
Unfortunately those dead ends can be pricey in a world where insurance won't pay.
My belief is that a lot of doctors are working with the best we know, and sometimes, they hit roadblocks. My goal is to support my immune system, work on co-infections..and hope that my lyme is gone.
But if it is not, then as I regain strength, maybe research will find better antibiotics and treatments.
Maybe this doctor has done all he/she can do for you at this time. Unfortunately, it is OUR job to never stop searching. If you are lucky, you will find a doctor who feels the same. I know they tend to be the most expensive though.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
personally I feel alot of them dont want to get into trouble with the cdc and ama. ive had more than one doc tell me not to mention lyme to him or his staff cause they would get reported for mistreating patients.
thats why theres not enough doctors...fear..
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymeboy
Unregistered
posted
LLMDs are not all great. In fact most are just slightly better MDs, which is still pretty bad.
I agree with Randibear. Many of them want to avoid prosecution, or even answering any questions. LLMD or not, most of them just want to keep collecting the money and not be hassled. It's very rare to find a freedom fighter/doctor/advocate/Lyme specialist in one office. That usually requires a team and costs more than the average citizen makes.
Money is the biggest issue with Lyme. Doctors don't want to stop making it, and patients always run out of it, which will keep us sick and make us sicker. NO ONE is talking about this.
Mariel25, if you're in CT and you have money to spend on LLMDs, use Dr. H. There's not much else in the Northeast that's any good. His office is many of the things listed above. Cannot say he'll cure you but they will be leaps and bounds past some idiot that decides to drop you because you're not getting better. I sometimes wonder if Dr. H is the only real MD in the NE, let alone LLMD. What kind of pathetic system are we working with these days?
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Catgirl
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posted
Mariel, how were you doing before your doc dumped you? Were you making any improvements? If not, maybe this is an opportunity for you to shift your focus to another method of treatment.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
No improvements because I was never on the right treatment which was supposed to be now. Looks like I won't be getting it.
Posts: 61 | From Connecticut | Registered: Jan 2015
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm no doc, but not so sure one antibiotic like rocephin will make all the difference. Maybe abx are not for you. You might do better with other methods.
So many people before you have done terrible on abx, and were forced to try other things. You may want to consider an alternative doc.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Tried herbs- did nothing for me. I don't know what other alternatives can help a severe case like this. Rocephin gave me my life back 5 years ago.
Posts: 61 | From Connecticut | Registered: Jan 2015
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
There are others who've had severe cases as well and abx didn't do much for them. Hopefully rocephin will work again for you.
Other things to consider are: rife, ondamed, Dr. K practitioners, mild HBOT, photons, pemf mats, etc. IMO, it's never one thing or one drug that does it, but a combination of other things and at the right time.
There are also other major things to consider like if a person can detox, or even absorb nutrients. Genetic testing will help find the road blocks. Also, parasites hold people back, big time. Most lyme patients have no clue they have them (testing is poor).
Try to let go of what happened and push forward. You will find another doc with a fresh pair of eyes to help you. That's the good that will come of of this. I wish you the very best!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Was there any doubt that you were actually sick with a TBD? Did the doctor ever suggest that maybe the treatment wasn't working because you weren't actually infected? How positive was your diagnosis?
This is strange behavior for any doctor, never mind an LLMD who should be familiar with the struggles that the Lyme infected go through.
I'm sorry this happened.
Posts: 872 | From New York City | Registered: Jun 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
sounds like he is just covering his A** becasue he doesnt' know what to do for you.
many drs like this out there. weak and following they are.
I wish you luck, and pray for you to find hope again. this has happened to me prior to dx. drs thought I was just nuts. ugh
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Thanks for your support. Yes I will push forward and no-there was no doubt that I am sick with these infections. Still finding this situation hard to cope with. I am an emotional person and could never do this to anyone.
Posts: 61 | From Connecticut | Registered: Jan 2015
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posted
I've been dumped by two prominent ILADS LLMDs.
There is/was no doubt that I am positive for Lyme and several co-infections. One LLMD said my Igenex WB had more +++bands lit up than any test he'd seen up until then.
In both cases, I was dumped because I did not improve from abx therapy, but instead got much worse.
There was no discussion in either case. Nor was I given any referrals for possible docs to see. I was dumped cold.
In one case, I was in such bad shape, stuck in the house, unable to move, and my LLMD cut off my meds. I had to beg him to write me a fifteen day supply that would last until I could find a new doc to take over. Zero compassion.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
It sounds as if he didn't know how to treat you, and then he handled it in the worst possible way. I would focus your attention and time on finding a new and much better doctor. You deserve much better!
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
I was dumped by my LLMD also. They only tried 2 different abx. My primary care doctor also gave up referrals. I have not found another LLMD as yet.
Posts: 523 | From southern new jersey | Registered: May 2003
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Each medical doctor has a limited set of therapies to offer.
They need YEARS of experience with one protocol or therapy to offer each option to patients.
Once they used all their guns /protocols, they can't offer anything else, because a lifetime is TOO SHORT to try ALL therapies.
You got to move to other practioner!
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thank you- still looking but not every doctor will treat long standing cases.
Posts: 61 | From Connecticut | Registered: Jan 2015
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Many here including myself had to treat themselves with alternatives.
Check out Buhners book on herbs and also consider treating parasites which many LLMDs are not doing even though many ticks are carrying the Filarial Worm co-infection that was discovered by Burgdorfer in the ticks he dissected.
www.lymephotos.com I had these exiting after starting salt/c and antiparasitic herbs.
Visit the lymestrategies salt/c site. Empower yourself it can be very rewarding. Doctors don't always have the answers.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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