posted
Have been dumped by my doc, no more treatment for me.
The orals have not been holding it back, and during the last 5 months, obvious muscle wasting has developed (for the first time), and swallowing difficulty about the worst it has ever been. I had been told to have my catheter removed, but was stalling because of fear of just this sort of thing. Think it is going to take more IV to stop this progression.
Instead, was told to see a physiotherapist and start using whey products, other supplements. But no more treatment! Guess I wasn't generating enuf income for them. But they did send me to the in-house nutritionist for another round, getting to use their dexa machine. Wonder what the charge will be for this? Just running the bill up for their last shot at my insurance company.
So, I made a 1000 mile trip for this kind of ``care?'' Was told I should be coming more often (but they had cancelled two of the last three appts. at the last minute because the person I was seeing would not be in the office.) Good thing I was driving and didn't have non-refundable airline tickets. When I pointed this out, no reply.
Don't know what I am going to do now. Not looking for suggestions as I have spent the last six years learning all about the treatment options and who is doing what. There really is no obvious choice at this point, have been thru the mill before getting to this practice. The medical person I was seeing here told me a call would be made to my ``local'' doc to discuss treatment and then call me, but there has been no call, and the local doc had made it clear my case was too advanced for her. This promise to call was clearly a lie to get rid of me without a scene. I guess my life is worthless to them, and progression in neurological damage unimportant.
Sorry to bring bad news. No one wants to hear these things. But it might be better to realize that there is a possibility like this, so you are on guard. We really do need to be activists, or we will continue to be at the mercy of people like this, because there aren't enuf doctors who will treat us, and the choice is so limited. Another thing to learn from this is that it is not safe to assume you will be able to get all the treatment you need, for as long as you need it, and that may not be due to the controversy, but to other reasons. I had previously heard some unsettling reports about this practice, but didn't know the particular situation and thought maybe there were extenuating circumstances. Didn't want to judge without all the facts. But this time, I have all the facts and there are no satisfactory explanations. This doctor claimed in front of an audience that he treated until several months after all symptoms were gone. Clearly not true. This is not a practice that is afraid to treat aggressively.
If you continue to get good treatment with these people, I am happy for you. Wish I could say the same.
It was ironic that waiting in my mail box upon return from this long driving trip was an announcement of the grand new facilities the practice is opening soon.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
Lou, I am so sorry to hear this, it makes me very angry!!!! You can't give up!!!...... No this is a temporary set back o.k.?!!!!......You deserve better and you can get another doctor!!!!!
No reason given, just we don't want to see you any more?.....Aren't there laws for refusal to continue to treat?
Please go read, Melissa Kaplan's "What should you do if you have a complaint about your physician, hospital or health plan?".....even though it's from Calif. she has good info. Complaints About Physicians
Also I bet if you searched on Crime of Lyme's postings you will find something about phsyicians denying treatment.
You have a right to continued treatment!!....Please don't give up!!!!!!!!!!!!!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
| IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
This stinks! How can he/she do this?
We are all attached to you - your intelligence &voice of reason.
Stay here with us and keep the posts coming.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Lou, This really made me boil, too! I'm so sorry you had to go through this and appreciate the cautionary advice.
I was actually wondering today what I'd do if I could no longer see my current LLMD (for whatever reasons).
Anyway, hang in there, and if there's anything any of us can do or help you with, please don't hesitate to let us know, okay?
My thoughts are with you, Lou!
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
What the h**l Lou, weren't you healing fast enough ? Trying to make them look bad.
Hey Lou, if you go to a bakery and get a stale loaf of bread, just go to the one down the street, where it's fresh baked.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Lou, I am so sorry. You have been on lymenet for a bit longer than me, and I have read your posts thru the years knowing that you are a step ahead of me.
In this instance though, where your LLMD is dumping you, I wanted to tell you that I learned of something called "patient abandonment". My sons pediatrician brought it up with me when my son had a bulls eye rash a few years ago, and my current LLMD would not treat him without seeing him in person. We were scheduled to leave for a long vacation almost the following day (after trying to get an initial script for abx to cover my son while we were on this trip).
My pedi, who I called after a frustrating few minutes on the phone with my LLMD's reception/phone person (denying me the abx prescription) told me that this amounted to "patient abandonment" and I should let the LLMD know that I knew what this was about.
I think it means that if your doctor leaves you high and dry, without an alternative doctor who will take on your care while you are still undergoing treatment for whatever illness you are currently experiencing, that it is called that, and it is ILLEGAL. At least in California it is. The pedi could not emphasize this strongly enough to me on the phone.
I had vaguely heard of this issue, abandonment, but in my situation of high anxiety over finding this bulls eye rash, and knowing I was having to leave town on this @#$% vacation that my husband had planned and would refuse to postpone due to this rash I'd found, I was spinning my wheels, calling my son's pedi group (who had this far refused to even listen to me tell them about both my son's battle with lyme). and hoping that someone in the group of 5 pedi's, would HELP ME try and get a round of abx to cover my son for the amount of time we would be gone out of town.
Turns out one of the pedi's did do just that, and then I had to set up the LLMD appt. immediately, to get my son into see that doctor to get his abx on track.
But, it sure felt like somewhere down the line, I was being abandoned (at least temporarily by the LLMD's office) when up the creek.
Could this possibly be help you at all? My story, that is. Julie
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
lou, I am deeply sorry to hear about this. I don't know what I can do, but if there is anything, let me know.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Lou get another LLMD some of them just dont have the guts or brains to stick it out.Sorry your dealing with this
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
waas it dr. h? in hyde park? I think you said you went there..let me know I am now scared I have him too...
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
| IP: Logged |
posted
I have had no improvement since I started abx 8 mos ago so I asked my LLMD if aaai should be discouraged and he said, 'NEVER LOSE HOPE. THERE ARE ALWAYS DIFFERENT TXS WE CAN DO." I realize you have been at this longer than me, but it is all relative.
My LLMD is Dr C in Mo.
Hang in. IMO it is just a matter of finding the right tx or combination. When I wonder if I have missed some important piece, I wonder if I should address my 7 root canals and cavitations.
Posts: 830 | From Colorado | Registered: Mar 2005
| IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I'm so sorry you have been treated in this fashion.
Please don't give up. Don't know where you are located, but just as I know there are LLMDs I'm sure you will find someone who will not throw in the towel so early.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Lou, I'm so sorry.
It's ironic that you are always the one sticking up for LLMD's in every possible way, even on this particular topic! And to have this happen to you without explanation or a by-your-leave must be just maddening.
It's unconscionable, but you must think of it as perhaps some sort of blessing in disguise. Perhaps you're meant to see another doctor altogether, who will devise a plan for you that this doctor never would have thought of.
It's possible your doctor is intimidated by the challenging nature of your case. Or by the fact that you are so smart and learned and well-researched about Lyme.
Please try and stay positive through this rough time. Hopefully something good will come of it.
Love,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
Thanks for the kind words. I was a bit worried about posting about this, but felt it was a public service and might help someone.
Unfortunately, abandonment and reporting to state medical board are dogs with no teeth when it comes to Lyme. Undertreating Lyme is just what the state medical boards seem to prefer! Am sure they would call this post Lyme syndrome, not requiring abx.
I am kinda wondering if there really is anything else that will work at this point. Have a feeling these borrelia are wilier than the abx. Guess I should be thinking about Dr. B but he is apparently not taking new patients, and the expense and distance are a factor. Really tired of dragging myself all over the place for medical care. Plus, Dr. B seems to be using a lot of bicillin. Not sure I can face an endless procession of needles. Needles and I have always been enemies.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
lymeloco
Unregistered
posted
lou,
First off, I'm so sorry this is happening to you!
I hope your not giving up! You have been a major assest to this b.b..
If it's any consolation to you, I had muscle wasting, and swallowing difficulties earlier on.
I started doing stretches and just walking to strengthen, and I do not have any problems now.
I know of a few people that have been treated longer than we have, and are living successful lives.
I myself have been busy working around the house and yard. Yes, there are times when I'm not motivated, but it's because I'm the type of person that needs a schedule.
Please don't give up! Try another llmd.. I can't understand why this doctor did this on such short notice. Didn't he give you any indication why? After all this time, and now he just stops?
Have you found a difference with treatment? You have helped so many people on here, and now what can we do to help you?
It just doesn't seem legal or ethical! We are all behind you 100%!!
IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Why not get on Dr. B.'s waiting list anyway. When you get an appointment then plan your trip and stay with others from here who post who would gladly put you up.
That's something we should try to do for one another.
This is the most physically and emotionally draining disease.
Could your primary doc call the llmd of your choice on your behalf?????
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
lou, I am terribly upset for you. There is nothing worse than betrayal by someone you trust to help you.
you have helped many people on this board, so I hope you feel the concern and support that we feel for you and your situation.
hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
posted
I'm so sorry, Lou! By the description, my IMMEDIATE Guess is a Pennsylvania LLMD opening something soon...he's done the same thing to M-A-N-Y...myself included! My 1st appt. many yrs. ago was $1200 right b-4 Christmas!
Please don't let distance be a factor! You have so many friends here on the Eastcoast!
Good Luck & God Bless, Lou! ~Reno
-------------------- ~Life's too short, eat dessert first Posts: 134 | From PA | Registered: May 2005
| IP: Logged |
lyme_suz
Unregistered
posted
Hi Lou,
I just wanted to say that I am glad that you did post. You of all people deserve a little support for crying out loud.
I have been helped out a lot just following your posts. Thanks a lot and I am sending up a prayer for you to be led to the best treatment option and kind drs.
I hope the replies have been helpful. We will fight for you.
So sorry this happened to you. Hubby keeps getting dumped by pcp's so I have some idea what you are going through.
For those like you and hubby who have serious long-term neuro symptoms there don't seem to be many options. I am always trying to research and stay a step or two ahead of current treatment -- if this doesn't work who can we go to next or what test or treatment have we not tried? It seems like the list keeps getting shorter and shorter, especially as finances are less and less available.
You are in my thoughts and prayers.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
LabRat
Frequent Contributor (1K+ posts)
Member # 78
posted
Don't know what I am going to do now. Not looking for suggestions
Well Lou, this doesn't sound like the best plan I ever heard of but I know where your coming from, (as the hip folks say). Your bound to be HLA-DR4, same as me if your too sore and stiff to get around with joint pains and now you can't get nsaids, life sure gets tejus (tedious) doesn't it?
Two years ago after three or four years of very heavy treatment of everything that came down the pike, (there was no consideration of expense) I had to ``ratchet'' myself up the stairs due to joint pain and loss of muscle strength then I developed double vision and my most powerful took me off everything!!
About a month later (and two eye specialist) we gave some thought that we might kill me before we killed the germs, so making the best of a bad situation, we installed an elevator and got on with our lives. No one gets better own their own so we decided to use a low dose of Doxycycline, 100mg to maybe contain (hold your own or keep what you've got), having just about given up on a cure with what is at hand today. I kept using the stairs and never noticed improvement except there would seem to be good days but then there would be bad days too.
After a couple of months the double vision very slowly over time departed and looking back my joint pains were easing up and I was having less trouble with the stairs.
Someone made a post and I answered with the above and Meg (old farm foot) came on and said there was research info over in Medical that day that echoed my post. It was very interesting and confirming what my most powerful had stumbled on to. The doxy also seems to fight inflammation and has other properties that are helpful.
I had used it before for a short time but felt it wasn't doing anything. I had to give up to get better!!
Now I wouldn't suggest you follow in my footsteps, but seeing as how your current plan ain't all that hot and loaded with possibilities, you might think about it. We could form a company, labrats inc. I used 100 mg and you could play catch up and do two hundred mg a day to see if you improved in a shorter time than two years.
You don't need one of those LLMDs. You need a young doc that will work with you. They all have access to the same information, it's just a young doc tries harder and if he thinks you can teach him something, he'll double check your suggestion and if no harm he'll work with you. Old docs, once something works for them, they're like us, why change?
Posts: 1887 | From Corpus Christi, Texas | Registered: Oct 2000
| IP: Logged |
posted
Thanks for the comments and support everybody. Warms the cockles of my heart. What is a heart cockle, I wonder?
Labrat, you are right about the current plan not being so hot and loaded with possibilities. For sure.
You know, I have never been totally convinced by this HLA stuff. Maybe it is just over my head or I am in denial, but it seems suspiciously like just another reason why we shouldn't get treated....because we have bad genes! See, our fault again.
The symptoms that are not being held back by orals at this time are not joint, but neuro. It is swallowing, voice and muscle wasting. I didn't even feel my muscle problem coming on. Seems like it should have gone numb or stabbed or something. Just looked at my leg one day and realized there was a big dent where there shouldn't be one, and it got worse. Local doc diagnosed the dent as muscle wasting. Then I realized why it had become so hard to get up from a stooped position, and why my voice was mostly gone, and several panics when I couldn't seem to swallow.
This happened while I was rotating three different oral combos, and using cyst buster occasionally. So, will more IV reverse this? Don't know who would prescribe it anyway. There is also a question in my mind about tickborne viruses and what symptoms they may be causing. Russian research shows a tickborne virus in the same ticks as lyme, etc. and that it can manifest itself as neuro symptoms that are ALS-like. This has been found in U.S. ticks too.
My current plan is to try another oral combo on my own that I have not done before. Sort of a last ditch stand. Then maybe try to get on Dr. B's waiting list, as someone suggested. Another suggestion was to reconsider bicillin, but still backing away from needles and didn't respond great to amoxicillin, so will any penicillin work, I wonder?
I am very glad you found something that works for your joint inflammation, labrat, and that it doesn't take a whole lot of abx firepower to do it. That's great. Are you taking glucosamine? I am a total convert on it for joints, although not usually big on alternative meds. It really works for me. BTW, I enjoyed listening to some of the oldies from the music website you posted a while back.
And now maybe I will stop blathering about my troubles for a while. You all will be the first to hear if something reverses my neuro problems.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
LabRat
Frequent Contributor (1K+ posts)
Member # 78
posted
Lou, you don't sound like you're having trouble with your mind but if you are that is an easy fix, been there and done that. 2.4 million units of Bicillian LA per week in combo with Flagyl or Tindazol. Takes about two weeks to see amazing difference but go a bit longer, maybe a month. That's only four or maybe eight shots max. It really worked for me to clear my mind, just got tired of the needle week after week! OK, that's all I think I know!
Posts: 1887 | From Corpus Christi, Texas | Registered: Oct 2000
| 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!
![[rant]](graemlins/rant.gif)
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
![[toilet]](graemlins/toilet.gif)
LLMD opening something soon...he's done the same thing to M-A-N-Y...myself included! ![[bonk]](graemlins/bonk.gif)
My 1st appt. many yrs. ago was $1200 right b-4 Christmas! ![[Big Grin]](biggrin.gif)
![[Mad]](mad.gif)
Printer-friendly view of this topic