posted
As I continue to read everybody's posts, everyone seems so knowledgeable. They also seem like they've been through A LOT.
I can't help but feel overwhelmed by all of this. It seems like a lot of work, with so many treatments targeting bacteria killing, detoxing, etc...
Now, I'm not saying I don't want to do all of this because I really, really just want to get better... but I need some organization. Right now, I have tons of info that's scrambled all over my brain. Is there a thread where people have listed a time line of their Lyme journey?
If not, can we start one?
Thanks in advance! Hugs and love!
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
| IP: Logged |
First, since you have an appointment scheduled for this Friday with just a regular doctor at university hospital. Not a LLMD (and you've already received advice about that that in general).
Specifically, considering your specific history, things you will need to know if you decide to go ahead with that "blind" appointment.
I know MS was only "suspected" yet detail here will help you avoid common pitfalls.
Especially know:
Even with what seems the clearest physical symptom, very often, many doctors will quickly declare "depression" or "psychological" causes.
Many will flat out accuse the patient of "faking symptoms to gain attention."
Once these are in your medical chart, all chances of being taken seriously go down the tube.
Spinal Tap (lumbar puncture) is not a good test for lyme.
Steroids can make lyme much worse.
MS is not the specific dx many think it is. Often caused by lyme or Cpn, etc. Details to consider here:
Also detail about other tick-borne infections, other stealth infections, environmental causes, etc. -
[ 08-27-2012, 02:06 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You've asked for some "timelines" of what some of us have gone through regarding diagnosis and treatment. Don't spend too long here as the bottom line is to move on your own action plan.
Still, to give you some idea of the journey . . .
How "regular" doctor appointments (with those who are not ILADS research aware) usually turn out for those with lyme:
[ 08-27-2012, 02:38 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Action plan: -----------------------
Connect with your area lyme support groups.
-------------------------
Although you were diagnosed with lyme and it was not properly treated a while ago (therefore seems likely to be at the root of this), you would need to be assessed for COINFECTIONS.
Lyme rarely travels alone and different medicines are required for different infections.
You are very correct in what you've stated. I had been very involved in the MS forums and there were quite a few people there who had been DXed with Lyme AND MS. They are so incredibly similar, which can make it so hard to figure out which one (if either) the person may have.
I did have a lumbar puncture and, as far as I know, no Lyme showed up (at least, my neuro never called me back or returned my calls about it).
It's so funny you posted a link to that thread with what docs have said to patients. I was already on page #3! It makes me laugh and cry, all at the same time. I knew I wasn't the only one who's dealt with that stuff but the numbers in that thread are quite staggering. I just want to hug everybody.
As for steroids, just based on the MS info and the effects they've had on other people, I am already anti steroid. It's good to know what they do to people with Lyme, though!
I like your idea about the link file on my desktop. I already do stuff like that so it will fit right in to my normal way of doing things. Thanks!
As for co-infections... Let's just get optimistic for a second, here, and say New Uni Doc in on the ball with Lyme and agrees to do another blood test on Friday. Do I all-out ask him to test for co-infections? Do I verbalize any knowledge I already have about Lyme or do I play dumb, at first, and keep my mouth closed?
My dream is to finally find a LLMD who can lead me through all of this and knows what they're doing. In the meantime, though, I realize I must be my own advocate. Unless...are there Lyme advocates? Are there people that will help me manage everything and help speak up for me when I just want to clam up and cry (I'm a sensitive... um...wuss, sometimes)?
I do have a neighbor that will be going with me on Friday to help me remember anything I haven't written down and kind of be a "witness", on my behalf, in case there are any "all in your head" comments.
Man, I have a lot of stuff to read. I will get through it all, through the day (and maybe the days following).
What is your story like? How did you start out? What trials did you go through and how are you now?
I know I'm long-winded. I'm sorry. I'm just like a little kid just chock full of questions.
Hugs and love!
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You ask:
"As for co-infections... Let's just get optimistic for a second, here, and say New Uni Doc in on the ball with Lyme and agrees to do another blood test on Friday.
Do I all-out ask him to test for co-infections?
Do I verbalize any knowledge I already have about Lyme or do I play dumb, at first, and keep my mouth closed? " (end quotes)
-----------------------
You need to go over the links in these sets below before proceeding. Without the knowledge there, IMO, it's impossible to proceed.
NO university doctor is going to do the right tests for lyme or for coinfections. Most do not even KNOW about coinfections.
Most importantly: (generally) they just do not believe in ANY chronic infections.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Remember that a majority of medical colleges have turned over the curriculum to pharmaceutical companies regarding treatment options. So doctors are only learning this way. University clinics are tied into this way.
The pharmaceutical companies do not make money in antibiotics but in long term approaches. They do not make money when patients get better.
Those most often given to those with chronic illness are antidepressants, sleep drugs, pain meds, NSAIDS, and others that can pose risk while doing nothing to address the underlying cause.
This way, they hook a patient on many drugs for life. And, as many come with side-effects, there are more drugs to treat the side-effects. Forever and ever.
Also remember that most doctors are against long term antibiotics. I understand some of the reasons. However, they are short-sighted in their sweeping approaches on this matter where terrible stealth infections are involved.
They also are unaware of the liver support that most LLMDs employ to help the patients along the way.
You need to know that many clinics get bonuses if doctors will just not even test for lyme. Really. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Learn what "DIFFICULT PATIENT" means and HOW (most) DOCTORS THINK -----------------------------------------------
Another way "blind" appointments can hurt is the likelihood of being labeled a "difficult patient" as it is a killer label for your medical file.
It is often written in large letters, just inside the file cover, for all who come after that doctor to see in advance of talking with that patient in the future.
This is the term for many with chronic illness, especially for those who even whisper about lyme.
They would not think "difficult CASE" but it's the label they use for patients they want to toss in the trash can. If that is ever in your file, it could prevent you from getting the care you need in an emergency.
There are seminars about this topic, really. You need to know how doctors think.
And, to be fair, we have to know what THAT doctor does before we go in and say what we want them to do for us. If they are not educated and do not treat "whatever" then it wastes our time and theirs.
You wouldn't take a Volvo to a Subaru dealer. It's up to us to research the doctors who will fit our health requirements.
Book below is not about lyme. Still, it is excellent for everyone to get to know his work. He's trying to help with understanding & communication between patients and doctors.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You write:
"I do have a neighbor that will be going with me on Friday to help me remember anything I haven't written down and kind of be a "witness", on my behalf, in case there are any "all in your head" comments." (end quote)
This is not going to make the doctor magically be the doctor you want him to be.
While we all know lists and careful notations can help a really good doctor . . . my experience with university doctor is that the instant they see a list with more than two lines, you are tossed into the "difficult patient" arena.
Now you could type out 4 or 5 questions and list 4 or 5 symptoms and explain at the top of the page that you find it difficult to talk in busy environments so you wanted to be prepared.
First, if you don't yet know how much time you will have, call and ask. If just a regular appointment, it could be 5 - 12 minutes.
ALONE would be best. The doctor is not about to be as open with you with someone else there. If possible, I'd go in alone, as the adult you need them to see you as.
Even if you need someone else, you need to establish a relationship. THREE IS A CROWD. The dynamics are destroyed. You will be seen as not quite capable of making your own decisions.
I don't mean to be so blunt but it's just the way it is. Now, if you were established and if you had a spouse, that might be different. But, just a friend - and a new appt. - it would not give the right impression.
And, you really do not want a friend to be involved with this. Unless they have lyme, they just can't know the complexity.
You give up some of your power by having them with you. They can't help but make judgements down the road. I'd steer clear of just how much you involve anyone else.
The one time I took someone into the room with me for an appointment, it was a huge boomerang. I was seen as being "attention seeking" -- not that I needed a friend to help me not fall over.
My friend told the doctor of some of the falls and seizures I'd had but it felt like I was a child.
He did not believe my friend any more than he believed me. In the file note, there was a disparaging comment about I had "talked a friend into trying to plead her case."
If you need mobility assistance, have your friend walk you to the room and then they go back to the waiting room.
If you need a wheelchair while there, call in advance and make arrangements.
As you seem intent on keeping this appointment (and I understand why but fear you will not find what you want), be sure to ask yourself
What do you want from him? What is THE purpose of the visit? What do you want to walk out that door with?
Is he educated enough in the areas you need?
Can he give you want you want / need? Are his hands free to do so?
What he might do: basic blood work; refer you to a specialist there at their clinic.
Unless he is a neurologist, he is not likely to order a MRI or other diagnostic imaging test.
Probably won't offer any medicines until he gets a better picture with the basic blood tests back.
But even if he runs an ANA, that is often positive with lyme so it's not a diagnostically sound as they may think.
If you do keep this appointment:
I would not utter one single word about lyme. Not one. Do include your past tests, though. Let the lyme tests be in your file. Mark it on the patient history form.
Get that mailed to you in advance or print from their website so you can have it done in advance.
But you keep quiet about lyme if you want him to be any good for you in any way possible right now.
Just my advice based on my experiences. But, after the experiences I've had, I will never ever make a "blind" appointment again in my life. Never.
I wish you could talk with all lyme support groups first.
You need to find a good GP but if you keep this appt and it's not going to work, then to "shop around" more won't look good. They will all have records of other MDs you've seen.
With the support groups' guidance, you may be able to find a GP who can help you with basics, at least. -
[ 08-27-2012, 07:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- dmc posted this at your other thread. From someone who knows the CT university clinics, this speaks volumes:
dmc cautions: "DO NOT GO TO ANY UNIVERSITY DOCTOR HERE IN CT- yes, I'm yelling. I will send you a pm with couple docs that take insurance." (end quote from dmc) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
New appt question -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Okay, thanks Keebler.
After reading through that thread, I don't see the point of going through another workup with a new doctor. Especially one who doesn't have a good record of treating Lyme.
You know it's Lyme, but he doesn't, and he'll have to order all kinds of testing. Expensive and time consuming.
However, what always happens is that the new patient decides to go to the new doctor. People don't want to believe strangers on the internet, and can you blame them.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
I hope dmc sent you some referrals - no nonLyme-literate doctor is going to know what to do with you. We all learned the hard way and are trying to spare you that $%#@!$@$@!#@ experience...
Posts: 13116 | From San Francisco | Registered: May 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!
![[group hug]](graemlins/grouphug.gif)
![[Razz]](tongue.gif)
![[Smile]](smile.gif)
![[dizzy]](graemlins/dizzy.gif)
![[Roll Eyes]](rolleyes.gif)
Printer-friendly view of this topic