posted
I was only at the LLMD so far to get the blood test for Igenex, so I haven't actually met the dr. The receptionist told me tho that I will not be able to get a copy of that report because the drs name is on the top and it is a liability. Is this normal? I mean I had to pay $260 for that test. I won't see him until the end of August but I wanted to get a copy of it so to do my own research. How can I get a copy of the test that I paid for? That doesn't seem right. What do you think?
Posts: 33 | From PA | Registered: Jul 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet!
Once the results come back and you go to the doctor for your appointment, you should have no problem getting a copy of the test results.
Not having a test result in advance of the appointment shouldn't slow down your research efforts one bit. I can keep you busy and overwhelmed with things to learn if you so desire, as can many others here.
I am concerned about the bigger picture here though. I am talking about this post and the other one you just made about having to buy supplements.
If you are unhappy and are second guessing the LLMD, his policies and practices before you've even had an appointment, perhaps you should change doctors now?
I understand you may be anxious to get this deal accomplished, but if you are not happy now and feel the need to complain publicly, this may not be the right direction for you to go.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Rather than post in two places... I am putting your other comments here and breaking it up so it is easier to read.
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"Before I go to my first appt with the LLMD, I wonder if i am required to purchase the supplements? I heard the nurse say his protocol is oral, iv and supplements.
Am I naive here? Can't I just begin with the oral? I am trying to save where I can but maybe he is trying to 'make' where he can too.
I ask this because 2 other lyme patients said they do not recommend it even tho they bought them. They have chronic lyme whereas I am fairly newly dx."
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Why not ask the "2 other lyme patients" who told you about supplements in the first place? They seem to have some knowledge about the situation. Or, better yet, ask the doctor at your appointment when you go.
As far as just beginning with "the orals".... that is up to the doctor. What if he determines you need B-12 to prevent nerve damage? Or you are very low in Vitamin D?
I wouldn't write off his potential treatment protocol, especially before you even know what it is, what you have, what you may or may not need, or anything about it.
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi,
You are not required to buy anything, consume anything, accept any treatment protocol that you don't see fit. Your doctor will recommend supplements but you can chose to buy them from him or on your own or nothing at all.
In all fairness I was very paranoid at first as well. I went to see my LLMD and walked out spending almost $1,000 in cash (appt itself was $395 and the rest were supplements). I too felt like she was trying to "make money" off of me. Then to make things worse she REFUSED to put me on antibiotics until after my lab works come back AND that I had taken supplements for a full month!
However, since I started the IVs I'm so glad she did what she did b/c w/out all the supplemets to support my body their is NO WAY I could have handled the heavy duty poison! It took awhile but I learned to trust her and I feel confident that she knows what she's doing. But that took some time. But if after a month and you are still second guessing your Doctor then perhaps you should find another one?
Last but not least, your Dr. should call you w/ the lab results regardless of when you have your next appointment. If he doesn't you can call and have them fax/email you a copy. But you won't be able to get it straight from the lab. Good luck.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If I am understanding you correctly, rather than make you wait 2 months for your first appointment to get tested through Igenex, this lyme doctor allowed you to come in for a blood draw in advance of your appointment. THat's how you got tested through Igenex BEFORE ever seeing the lyme doctor.
This is really doing the patient a big favor, in my opinion. I don't know any other lyme doctors that will do this.
So, when you do get to see the doc, he will have the results of your tests and can discuss them with you. Most people have the blood draw at first appt and find out results at second appt.
So, you are ahead of the game because of what this doctor's office is willing to do.
It is typical that the doctor does not want to release the results to you before he gets a chance to explain the results to you. So, just wait for your appt (I know it is tough) to get your results.
Also, since he has not yet seen you, there may be some legal liability issue were he to give you a copy of the results and then you never come in to see him and actually become his patient.
For the price you quoted, it sounds like you just had the lyme Western Blot test done. No coinfection testing.
In all of my years of experience (about 9), lyme doctors don't call the patient with the lab results. Instead, they tell them to you at your next appt, and they give you a copy of them then. All the lyme docs I know operate that way. They don't have time to call the patient and say, "You have a few positive bands on the Western Blot. I'll discuss it with you further when you come in."
Also, in your case, since you have yet to even pay the doctor for an office visit, I can understand the doctor not wanting to spend time studying your test results and calling you on the phone to discuss them. His time is money. What if he does all this and then you never show up for your first appt? He never gets paid for his time. So, it makes sense to me how he is operating.
A good lyme doctor is going to treat you based on symptoms anyway, and not test results. So, if you tell him various lyme symptoms at your first appt, he is going to at least give you a trial course of antibiotics no matter what the Igenex test results are.
With this disease, you have to develop patience. Be sure you have a complete written list of all of your symptoms to take with you to the first appt. That means more than anything to the doctor.
If you have not yet read the Burrascano LYme Treatment Guidelines, I suggest you read and study them. On pages 9-10 there is a list of symptoms. You can use that to help you come up with your list for your first appt.
A good lyme doctor considers blood test results as one factor in coming up with the lyme diagnosis. The other factors are the symptoms you describe, your history, a physical exam, etc. The diagnosis of lyme is not made based on a blood test, but instead based on all of the facts of your case. So, don't put too much importance on these test results.
See this quote from page 7 of Burrascano:
"DIAGNOSTIC HINTS Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints......
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy."
As you can see from the above quote, the tests for lyme are not reliable, so lyme doctors will do many things, including giving you a trial course of antibiotics, to help them decide whether or not you have lyme disease.
To read up on the Western Blot lyme test in advance, see this post:
It can be found near the top of the Medical Questions forum, under "Quick Links to Popular Topics."
In fact, you may want to read everything under Quick Links.
I know the wait for your first lyme doc appointment is the longest wait in history! I remember it well.
Just know that I had undiagnosed lyme disease for 10 years before a doctor thought to test me for lyme disease. Still, I got rid of my lyme disease, babesiosis, and bartonella. In April, it was 6 years since I completed my treatment and I am still symptom free, enjoying my life.
The doc is the key to getting rid of lyme disease. Can't stress that enough. Lots of doctors treat lyme disease, but only a few, in my experience, know enough to get rid of it for a person.
So, study Burrascano and learn what good lyme treatment looks like. (Many supplements are required to restore a lyme patient to health. Read it in Burrascano.) The Burrascano protocol is a 4-pronged approach:
medications supplements diet, and exercise (weight lifting for one hour every other day) to boost the immune system, drive the meds deeper into the tissues, etc.
Medications alone will not conquer this disease. It is much, much more than that. You also must adopt a healthy lifestyle--no smoking, no drinking, plenty of rest, etc.
You can look at the Igenex website (igenex.com) and even call Igenex about cost of tests. It seems to me that all you have paid so far is the money that has to be sent to Igenex in order to have the lyme Western Blot test performed. (That money has to be sent to Igenex with the blood and test request.) You have not yet paid this doctor's office anything from what I can see. (Maybe a small fee for a blood draw.)
Hang in there!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Tincup - I guess I shouldn't have posted my thoughts or questions on this but I really did not feel the need to publicly complain.
I just felt the need to publicly ask others for opinions as I am just trying to know what I am up against before getting into it. thank you for your input.
Scorpiogirl - Thank you! that is what I was wondering. I am not against taking or doing whatever they recomend but I just wondered what I am obligated for.
It's just that I have heard so very many viewpoints on it all and I want to be well prepared when I am there. Some say the dr coulkd get rid of you if you don't buy from them.
I am afraid of ivs that is why I say that also but I am sure if I need them, then I will do what I must. I'm glad it worked so well for you.
the lab test I refer to, I just meant even after my visit, they said that a copy of the test cannot leave there office because his name is on it.
I only paid half of the office visit to hold and if I should cancel, then they keep that. I am not needing a copy before the visit but I'd like to have it at home for me to familiarize myself what bands are etc.
I guess I shouldn't have posted my thoughts on it like that tho.
TF - Thank you for all that information! Most of this is so dang confusing and I am trying to grasp it all. Peoples opinions vary greatly and I am trying to make sense of it all.
Some say to me that I better get there asap and each day these bugs get into me deeper etc so it creates a panic in me that is for sure.
The dr I picked has a great rep and who am I to say differently about his protocol? Its not that, it's just I have to make sure I am doing the right thing is all. I'm sure it came out wrong.
you say "I know the wait for your first lyme doc appointment is the longest wait in history!" I remember it well."
I couldnt agree more!
"Just know that I had undiagnosed lyme disease for 10 years before a doctor thought to test me for lyme disease. Still, I got rid of my lyme disease, babesiosis, and bartonella. In April, it was 6 years since I completed my treatment and I am still symptom free, enjoying my life."
I am SO glad to hear you say that! I am happy for you and happy to know that it is possible.
Thank you for responding to my concerns.
Posts: 33 | From PA | Registered: Jul 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I guess my LLNP was super excited then... b/c she called and blew up my phone during office hour... when I didn't pick up she finally called the house at 7pm and said "Slam Dunk! You got Lyme". Then she emailed me the results. I think in my case it was due to the Brain lesions and she was soo relieved I was positive?? I don't know.
My new LLMD's office emails me all lab results as well. You just have to work out your expectations with them and come to an agreement. I told my LLMD that I want a copy of everything so I can keep track so they email them over no problem!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
They cannot deny you a copy of your lab report. You have the right to those lab reports. This is federal law and is addressed under HIPAA.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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