Topic: Am I the only one that all doctors say "your one of the difficult cases"
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
is this just an excuse because i am not getting well or responding to their protocols like they would like or i would like?
What does this mean and do they just say this to all of us in this boat/ What percentage of us in this group are there do you think?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I think it is the former. I was told this as well and pretty everyone I know has also. I think it just means they don't know what to do. There are a lot of LLMDs who have a certain protocol that they stick by, if you don't respond you are "difficult". Don't worry, just time to move on.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Add me to this group. I went to visit a mainstream dr to check on my thyroid and he told me well you are a complex case and in medecine you really want to be simple.
gee thanks doc.
Every LLMD i have seen has said Im complex...my PT says I dont respond like other patients.
the rheumatologist i saw last week said...we dont have to figure it out right now...the bad thing is you are left suffering with symptoms. Again gee thanks...I didnt fit into his category either.
I like to say 'I remain a medical mystery'
Im currently not on abx or any lyme treatment and had a pretty good summer overall...now my health is hitting bottom again.
You arent alone...it is just the doctors way of saying that your body has so much going on they have no clue what is causing it or how to treat. You dont fit into a category that other patients do.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
posted
Yep, I've been told by about 6 different doctors now. Some of us just have so much going on in our bodies that doctors don't even know where to start.
Posts: 710 | From West Coast | Registered: May 2008
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I was told that I was my LLMD's ENIGMA! Talk about a confidence booster.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
James, are you debilitated if you don't do Babesia treatment? I recall you've said you treated it extensively. I'm trying to figure out how serious Babesia is symptom-wise daily, not just in the I feel like exercising capacity if that makes sense. The latter is important of course, but not debilitating from a financial side.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I have been told this by every doctor I go to. I am sick of it.
Or the comment. "you must be full of neurotoxins" So that must be why you are not responding as well as others..
Ok? Lets work on that? SO..????
BLANK
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
I have been told the same thing by every mainstream doctor, but not by my LLMD or FFC Doctor....I haven't treated my lyme for a year yet, but I am not any better and have tried a few different antiboitics combos, I am really hoping the "feel better" will kick in sometime soon!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
massman
Unregistered
posted
Find ART practitioners.
A great thing about ART practitioners is that assessment is done individually. Fine tuning.
IP: Logged |
posted
AliG If we weren't in the same state I would think we had the same doctor!! My LLMD said the SAME thing to me!!
Posts: 86 | From new york | Registered: Jun 2008
| IP: Logged |
posted
I have been told that by many docs, from LLMDs to regular docs to various specialists. I have been booted by two prominent LLMDs because I responded poorly and got worse under their care.
Oddly enough, my first LLMD, who eventually cast me aside, initially thought I was going to be "one of those patients who makes a full recovery." I was in good shape, otherwise healthy, strong, practicing good nutrition, and fit into a certain demographic that he said did particularly well. He kept on waiting for a spectacular turnaround. Oh well.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
posted
The fact is that we ARE very complicated and hard to treat, and all the answers are not there. That pretty well describes most chronic cases, IMO.
And who has time to delve into all these mysteries, with no research support, no specialist support, and patients galore?
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
I'm not the worst my LLMD has seen but has said I am more complicated than other lyme patients. I have poor detox and a low immune function. Now, with the new fry labs test... I have more biofilm than most of all the other patients except a couple.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- springshowers,
According to post of yours the other day, you have not yet even been evaluated by a LLMD.
Of course, all the other doctors are going to say anyone with lyme is difficult. That's what non LL doctors say all the time.
That is why you need to see a LLMD so that, even with a difficult road ahead, they've seen it all before and have experience and knowledge.
And, if a doctor who seriously knows lyme says that, ask them about co-infections and go over your self-care instructions in case something is missing. Bottom line, find the most knowledgeable doctor possible. This requires a huge amount of hard work on the part of the patient so you want to be sure you have the best guidance to make the work pay off. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I've gotten that along the way many times as well. I think it makes the doctors feel better. Rather than feeling as though they failed or need to look further for the possible causes of the condition, it is easier to say that someone is a "difficult case".
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I prefer the word "complex" myself, however, being told one has a difficult case may not be a bad thing - IF the doctor is saying it with all empathy, understanding and determination to help figure things out. Tone of voice and demeanor says a lot.
And - Just a head's up: It's better to be told you have a difficult case than being labeled a "difficult patient" which I saw in big letters and exclamation points, just inside the front cover of my medical chart - from a doctor who knew nothing even about CFS. This was before the lyme trio had been dx.
I have always had the best of manners at any doctor's office as if in a business meeting . . . never been loud, aggressive or angry toward any doctor - I just wanted to know what was wrong so I could feel better. I kept coming back with questions to which they had no answers. And, oops, I also was passing out a lot in that doctor's waiting room. I really wanted answers.
That was seen as being a "difficult patient" - even though I always took the best care of myself as possible.
In "doctor speak" there can be a big difference is saying ""you're one of the difficult cases" and that a patient is a "difficult patient" - or it may just be the way they phrase it toward you.
Be sure your doctor does not mean "difficult patient" - or you will never have any chance of good care with that doctor.
"DIfficult patient" is sometimes meant for a consistently rude and angry patient. Fair enough. Manners are important.
However, more often, "DIfficult patient is simply code word for malingerer, faker, pain-in-the-neck, hypochrondriac - as the doctor sees it. Sadly, those labeled as a "difficult patient" often have deep and lasting fatigue and serious symptoms that require a thorough examination and much thought.
Once "DIfficult patient" is written on a patient's chart they can kiss goodbye any fair treatment from any doctor for the rest of their days - unless they find a doctor who will challenge that label.
With a distinction here, that angry and rude patient behavior is never okay - this label seems to go far beyond labeling rude patients (and I'm sure there are a few out there) - to include those who are very sick ones who just want answers. Sometimes, just asking for answers is seen as rude by doctors.
It is to our benefit to see us through their eyes.
You can look inside the book and see over (177 customer reviews) at link above.
======================
Still, understanding that we face a long and rough road, it's just better to put behind us our anger and get on with business . . . leaving behind doctors that are not a good fit - for whatever reason (some are good people, just not the right doctors for us)-
- and move on to more positive encounters with knowledgeable doctors so that our best efforts at talking care of ourselves has the best chance possible.
(sorry for that run-on sentence. I have no idea how to fix that.) -
[ 10-05-2009, 02:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I'm like Nomoremuscles. My LLMD's thought I would be an 'easy' case. Strong, healthy, good habits (nutrition, exercise, etc.) before treating.
Two years now and I am not responding to much. I am still not as functional as before I started treating. I have went downhill, not up.
We are, I suppose a mystery. And lyme is a very time consuming disease (for doc's) to treat. I am sure it is much easier to treat a good responder.
I have started feeling guilty for not getting well, esp. when I see that 'perplexed' look in a doctors eye.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Feelfit,
Even with a good doctor and the best self care, a new doctor may be able to see something new - something overlooked, some method not yet tried . . . or suggest a change in self-care.
If you are seeing no results after two years, some sort of change seems in order.
However, remember the park ranger from Nevadan in UNDER OUR SKIN? it was not until the end of his third year on treatment that he really got his health back. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I agree with Scott on this - by calling us difficult cases, it keeps them from having to do anything about it, like learn more about what to do.
I have a genius of an alternative care doctor. He has studied the complexities of healing. He never says "you're a difficult case." He suggests the next thing to try.
These other doctors want easy medicine, and dealing with Lyme and co's ain't easy, let alone what else we've got.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I thought in my mind for some reason, that I would be one of the ones that turns around within 6 months of treatment. I have always gotten over things easily. But not this time.
At my last LLMD visit, he said you have refactory lyme.....meaning... "hard to treat". He doesn't say I am difficult though. He has seen this many times I am sure.
It has been almost a year and a half of treatment with minimal improvement. But doc doesn't seem ready to give up on me or anything like that.
Still, like feelfit, I feel a little guilty that I am not further along in my recovery. Also, I feel very frustrated with it all.
A good LLMD is use to a challenge; but the other docs, the GP's, rhuemy's, etc, they just want an easy out. Thats why we get diagnosis like Fibromyalgia, so they can dope us up and send us on our way. Easy money!
Keebler, I always think about the Park Ranger from UOS. Its what keeps me going.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
I'm curious, how many of you react to EVERYTHING? I suppose a good word would be "hypersensitive", to the point where new additions to a protocol has the potential to send you to the ER?
I think that's what makes me "complicated", even for my LLMDs and NDs. What's a patient, or a doctor, to do?
Posts: 710 | From West Coast | Registered: May 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It is very common for lyme patients to be hypersensitive not just to meds but to many things in the environment: scents, sounds, lights, too much activity.
To a good LLMD, that is never a surprise.
Is your LLMD surprised by that or just making note - or commenting as something to consider? Is your ND LL and ILADS-educated? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
LittleLymie...My problem is, I don't react to anything (meds). Never any herxing, just nothing. I can't say that I've ever seen anyone on the boards say that.
Posts: 847 | From upstateNY | Registered: Dec 2007
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hmm well I have seen what some consider LLMD doctors of all kinds. But maybe they are not the "BEST" in what you say is the "BEST"
So who are the "best". I asked that on the finding doctors thread...
And I see people here who post and say they are in the same boat. And who I follow and see their therapies and protocols and do not see any big time difference in what I am getting and have access too.
I am open to new doctors. But I need to know what the difference will be if I do.
I have been told I am healthy and strong and should be easy to treat. I even have been given 6 month quote a few times over.
Its been 7 years treating now and I have made changes and adjustments all along the way.
Not sure I agree a new doctor will make the big difference.
But willing to look into it and I have been.
If anyone wamts to PM who they think is the best and greatest out there I am willing to listen.
THANKS all
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
To my LLMDs defense, I DID turn out to have a ton of co-infections.
The ILADS LLMD that ordered the tests said that she thought I may have had the most positives she's ever seen.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- springshowers,
I am confused. You recently posted that you were unable to see a ILADS LLMD as your parents would only pay for an IDSA ID doctor.
I had not realized that you've been seeing ILADS LLMDs all along. Have they been ILADS member?
Have you been tested for celiac ? Have you tried a no-gluten diet? If not, that one step might help give you a nice step up.
Are you scent-free with all your personal and household products?
Are you exposed to mold?
Has your plan included liver support such as Milk Thistle, ALA, NAC, etc. - and adrenal support such as cordyceps or B-5, and other as outlined in Singleton's book (The Lyme Disease Solution) and in Burrascano's nutritional supplement list?
Antibiotics can be very hard on the liver. Tylenol is especially hard on the liver, especially for those who are dealing with neurotoxins in the first place.
Support such as Milk Thistle is just one thing to help protect. With any damage to the liver, symptoms such as fatigue, pain and brain fog will be worse and linger. It is far easier to protect a liver than trying to repair it.
Have you been assessed for heavy metals?
Have you been assessed for co-infections?
There are many questions - and I'm sure this is frustrating. I tend to thing though, that for every question, there is an answer.
I know not all of us will become well, still, it is so worth asking the questions, looking forward . . . .
Good luck.
------------------------
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:
Springshowers is currently treating at Envita clinic. I think her finances are running out and her family is not willing to help unless she switches to an IDSA type doc.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Keebler..> Yeah Bea has it right ...
I have done and had most all on your list. I am not able to go through and write it all out here now.
My diet is very clean and what I consider fine tuned even. No gluten no dairy and organics and no grains at all even except some brown rice once in awhile...
Well anyway..Yes I have been tested for it all!. Been testing ongoing too and many co infections have gone from positive to borderline or negative.
But still keep coming up lyme positive and fry tests positive.
I see him too and am at Envita and am adding another homeopathic doctor possibly due to cost at Envita and they can continue some of what I am doing because I feel I need longer therapy than the 4 weeks I have done for sure.
Have not decided yet about continuing on ABX or giving a break for detox for a good while. I do feel I have detox issues and need to address those.
I think the Envita protocol is working and I have and am killing a ton of stuff. I feel it but I do not feel I am detoxing well enough and am meeting with them tommorrow to discuss what else I can do or they can do to support that.
So far they just put me on Welchol and added Ozone Saunas and Cold Laser treatments> They are powerful and I can barely cope with them. Thats how I know I am really needing it.. But I do not want to hurt myself either. So timing and methods are what I am trying to figure out. Going to ask about IV Gluth too.
Doing Milk Thistle but not the other things you listed but B complex too.
Yes to scent free and fragrance free and making adjustments and fine tuning all the time.
So.. for now .... ..
And yes I am running out of money and my family wants to jump in but only if I switch to a IDSA type doctor. I am working on sending my family information to show them that is not the best choice but that is a work in progress. I have some medical professionals in my family who are adimate that I do that and that is what would cure me and I am just being stupid by not listening.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
How do they think an IDSA dr will cure you when it is well known that these drs will only treat you for 4 wks??
Do you have a positive WB? If not, they won't treat you at all.
I'm also confused about who you have seen. Real LLMD's or what? I don't get it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
To my LLMDs defense, I DID turn out to have a ton of co-infections.
The ILADS LLMD that ordered the tests said that she thought I may have had the most positives she's ever seen.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
posted
Probably most of us with LymeNet registrations more than a year or so old are the "complex cases". Of course, others are certainly complex too. But if we've been at it for several years, it means we have not been able to get rid of it yet!!!
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
| 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!
![[lol]](graemlins/lol.gif)
![[Frown]](frown.gif)
![[Roll Eyes]](rolleyes.gif)
Printer-friendly view of this topic