posted
What do I make of this letter I received as a certified letter in the mail yesterday??
I had terminated my PCP last week, in person might I add. He sent this letter in response to that. I am confused what this means.
His letter is as follows:
Dear Mrs.
Thanks for your recent note. There are a couple of corrections I would like to make to your statements:
You received two multi-channel western blots. There were eliza antibodies done as well for lymes, but they were confirmed with WB analysis.
Your spinal tap was negative for lyme on Sept. 2007.
Please be aware that if you pursue non-traditional treatments for lyme, a full neurological work up needs to be performed. I have had experience with two patients who followed the same course you are describing. One went on to develop Lou Gerhigs disease. The other died of a spinal malignancy. In both cases, their treatment was delayed about two years each; while "New Era" Lyme treatments were explored.
I will be happy to transfer your records to any place you would like them transferred. I hope you get the correct medical attention for your illness, and not rely on unproven treatments to get yourself well.
Truthfully Yours, Dr.
I am stumped to say the least.
WHat is everyone's take on this letter??
Thanks for the input everyone.
Posts: 25 | From MD | Registered: Sep 2007
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Greatcod
Unregistered
posted
I think your doctor is an honest man who is following the IDSA rules, according to which you require no more treatment. He is simply saying that there is a dark side to Alternatives, as there is. We forget sometimes that doctors see patients who have tried alternative treatments first, and have worsened their condition, before using conventional medicine. Your choice is beween a more aggressive Lyme Doctor, or alternatives.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by sickoflyme07: [QB] What do I make of this letter I received as a certified letter in the mail yesterday??
I had terminated my PCP last week, in person might I add. He sent this letter in response to that. I am confused what this means.
His letter is as follows:
Dear Mrs.
Thanks for your recent note. There are a couple of corrections I would like to make to your statements:
You received two multi-channel western blots. There were eliza antibodies done as well for lymes, but they were confirmed with WB analysis.
If he's calling it "lymeS" you need an LLMD. There is no "S" on it. That always worries me right away.
quote:Your spinal tap was negative for lyme on Sept. 2007.
Yeah, and most educated doctors realize that a spinal tap has at best a 20% chance of finding lyme. (With an even lesser chance of finding LymeS. Ha ha.) Obviously this doctor doesn't even know that. Perhaps he ought to do some reading.
quote:Please be aware that if you pursue non-traditional treatments for lyme, a full neurological work up needs to be performed. I have had experience with two patients who followed the same course you are describing. One went on to develop Lou Gerhigs disease. The other died of a spinal malignancy. In both cases, their treatment was delayed about two years each; while "New Era" Lyme treatments were explored.
By using the term "New Era" treatment, I reckon he is talking about antibiotics. As far as I know, there's nothing "new era" about antibiotics.
quote:I will be happy to transfer your records to any place you would like them transferred. I hope you get the correct medical attention for your illness, and not rely on unproven treatments to get yourself well.
Truthfully Yours, Dr.
"Unproven treatments????"
As far as I know, antibiotics are the only "proven" treatment.
Last I heard, the president of the United States consulted with the President of ILADS.
Reckon that's good enough for me.
Get yourself to an ILADS LLMD. Sooner, rather than later.
Wish we'd heard from you earlier and saved you the unnecessary pain of a spinal tap -- usually unnecessary and only ducks think they need one to "rule out" lyme. Or as your duck calls it, "LymeS." God help us.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sounds to me like he is saying that you don't have "lymes" but possibly something else that could be serious/deadly.
Also sounds a bit like a CYA (cover your a$$) letter. If anything happens, he can prove that he warned you. Why else send it certified?
Most if not all LLMD's do a very serious investigation to ensure that you don't have some other illness instead of, or in addition to, lyme. If you haven't been to an LLMD, please get to an ILADS LLMD.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I do have to agree it is a cover his *** letter.
I do see very clearly, tho that he is not educated enough in regards with the spinal tap. Even us non MD's out here know spinal taps are quite useless in detecting lyme. I basically got the spinal to appease him with his suspicion of MS because I was and still am still sick after the CDC lyme protocol. They conducted the Lymes test w/ the LP in addition to that.
If he suspects something more serious, tho ~ wouldnt he be obligated to let me know that suspicion?? Other than the MS, he didnt mention anything else other than that and Lyme. So, I am lost.
He does sound sincere enough and all, however, a red flag is waving here. Something doesnt sit right with me about this.
Thanks for the input everyone.
Posts: 25 | From MD | Registered: Sep 2007
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quote:Originally posted by TerryK: Sounds to me like he is saying that you don't have "lymes" but possibly something else that could be serious/deadly.
Also sounds a bit like a CYA (cover your a$$) letter. If anything happens, he can prove that he warned you. Why else send it certified?
Ditto. He's getting the monkey off his back in case you find out later that you have something other than Lyme disease.
Please find a good LLMD who will run you through tests to rule out other things and test you for Lyme and coinfections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote: Please be aware that if you pursue non-traditional treatments for lyme, a full neurological work up needs to be performed.
Apparently non-traditional means "not sanctioned" by IDSA.
I didn't realize that you had a CDC positive lyme result and treatment. I'm not a doctor but I personally believe that you are on the right track in pursuing lyme. (not lymes, no s on the end) I also think it's a good idea to have other illness ruled out as well.
He does say that if you pursue lyme treatment, a full neurological work up needs to be performed. I guess if you don't pursue lyme treatment you don't need one???
He probably doesn't know that some patients with ALS (Lou Gehrigs disease), get better on lyme treatment. There are some who think that some cases of ALS are possibly caused by a particularly agressive strain of borrelia (the bacteria that causes lyme).
His attitude and knowledge are in line with one who is uneducated about lyme and simply relys on the IDSA for information and direction.
Edited to add: Get a copy of ALL of your medical records, including chart notes for yourself. My guess is that he doesn't suspect anything - he is probably stumped.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
He is trying to save his butt in case, god forbid, anything happens to you, because in his mind, you have ABL. Anything but lyme.
After you get better, be it months or years, send him a polite reply with a copy of his original letter telling him how well you are and that he was absolutely correct: you didnt have LymeS. You had lyme, and you used very "conventional" mainstream antibiotics to get better.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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tailz
Unregistered
posted
Why are doctors always happy to transfer records to another doctor? From this day forward,I want my records for myself.
After I saw the garbage written in my records which included medically irrelevant conjectures, there is no way anybody is going to sift through my records without my reviewing them first.
To give you an example, when I requested records from the neuro who did not wish to prescribe my Klonopin any longer, the very top page of my record included a copy of a sticky note which had my name, some doodling, and the words 'drug addict' staring back at me - which couldn't have been further from the truth.
In fact, no other doctor who I had requested records from included a copy of a sticky note of any type, which makes me wonder if this undated sticky note was created and copied for a purpose. I sent it back to him because that note was hurtful to me.
I looked up 'conjecture' to make sure I was using the correct word, and I am - an inference or judgment based on inconclusive or incomplete evidence.
So basically, had that record been transferred directly to the doctor of my choice, my new doctor's first impression of me would have been 'drug addict', and I find that manipulative to say the least. The fact that he sent this to me directly knowing I, too, would see that first when I pulled my records out of the envelope suggests to me that he was power-playing with me and reminding me that nobody was going to believe me, a 'drug addict', or a word of what I said over him.
I no longer trust my own judgments of people because this was the last thing I would have predicted he would do to me, so therefore, everybody now is suspect.
Sorry I went off on a tangent here. I guess what I'm saying is - have your records sent to you directly. And I agree with everybody else here - he's just trying to cover his rearend. Doctors are good at that, even when they are at fault.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I agree with the others, especially when I saw Lymes.
Uh oh.
If I don't treat a simple middle ear infection I can also get meningitis, spinal meningitis, etc.
I could also have the infection travel a very short way to my brain.
Would I then need a neurological consult?
Hang in there. Find a LLMD please.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I want to be very clear also on one thing ~ I DID go see a Neuro and my PCP knows this.
I ALSO went into John's Hopkins yesterday for another Neuro appt to rule out MS (Which he did).
So, this letter to me was quite strange. He , himself referred me to the original neuro and also the JH's Neuro. So, my head is spinning on this letter a little bit.
In my original Lyme Dx, this doc told me if I dont respond to the abx courses, then he would then go ahead and do the "Zebra" things. Never happened.
I went in for two follow up appts with him and he didnt TOUCH me. He sat accross the room from me and said, well, you must have MS or "How is your stress in your life"??. Nothing else.
I had a normal MRI and subsequent inconclusive spinal tap.
I was never given anything by these Neuros other than the exam. They didnt offer eeg, emg, etc...that threw me off, especially at JH.
For the person who got the report back with the "drug addict" note ~ man, that is just not OK; and I am sorry that happened to you! I FULLY believe doctors influence eachother with those scribbled notes and makes things more complicated than it has to be. My personal scrbbles on my reports from the original Neuro: Somatization Disorder. That ****ed me off to such a degree to read that. I have never had a somatization anything, ever in all my years of living. And of course, that is exactly what the neuro yesterday gently suggested. I got the "Its all in your head" thing. I dont accept that. I feel once a doc makes a note and records get bounced around, they tend to get more biased rather than the unbiased we need to get to the bottom of things. I cant possibly be presenting with all these symptoms because my mind is causing it. There is no way~ I know my body and my mind.
I am not sure what ABL stands for??
My head is spinning, for certain. This is a mind blowing roller-coaster ride.
I am just floored all in all at how my PCP treated me overall and had no guilt over terminating my relationship with him.
I am faxing my records to a LLMD tomorrow; found one relatively close by who goes by ILADS (Thanks again for the referral by the way, it helped me a lot). I requested me to fax things in FIRST, then if they see anything to be alarmed with, then I will go in. They agreed to that to cut the cost that way. I was quoted an hourly fee of $325 and phone consults at $35 per 10 minutes wow~ so a little negotiating is needed. Of couse they dont take my ins.
Thank you for the input on how you all are interpreting this letter. It is appreciated.
And yes, once things are proven and I am cured and A-Ok, I plan on personally walking into that doc's office and handing him a copy of my reports. Same with the orignial Neuro who rolled his eyes about this disease.
If however, this Doc suspects something else, he certainly didnt inform me of that. I feel if he suspects anything, he should have mentioned that. Not to just give such a vague letter. The letter was a very clear warning and I take it as such and will heed it, but, there was no real elaboration on his take of my case. So, adds to more confusion there. I dont see any indication that this doc thinks it is somatization. He is giving me a warning about something. Thanks again everyone.
Posts: 25 | From MD | Registered: Sep 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi sickoflyme -
ALS = amyotrophic lateral sclerosis or Lou Gehrig's
This was mentioned because your doctor talks about it in his letter about one of his patients who was diagnosed with it.
I had many many tests already when I first saw my LLMD - ruled out just about everything under the sun. My LLMD ran many more tests. I agree with vision though - rule out everything that you can.
It sounds like you had CDC positive lyme test and treatment (is that correct?) and did not receive adequate treatment for it. Also sounds like you were not tested or evaluated for co-infections. Highly suspicious of a TBI. Very important to get those ruld out and best done by an LLMD.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I don't know your case, but it would behoove you to make sure and rule out other illnesses.
The thing that makes this so difficult is the fact that many diseases that mimic Lyme, like MS and ALS, do not have any definitive tests and thus a sure diagnosis is difficult to make one way or the other.
There are several studies that show a connection between MS and Lyme disease. So, is MS really a disease or is it just a list of symptoms that really belong to Lyme disease?
Just keep in mind that most physicians aren't familiar with Lyme disease or how to treat it...just as most LLMDs are not neurologists who are familiar with all the neuro diseases. You're going to have be your own advocate here.
One place to start may be to get IGeneX to test you for Lyme and all of the co-infections. These tests would help aid an LLMD in at least diagnosing Lyme one way or the other. Keep in mind that there are no definitive test for Lyme either...EXCEPT if you have/had a bulls-eye rash or erythema migrans.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
Ooops, I posted my stuff after you posted your latest Sickoflyme!
Well, since you've already been to a neuro and if everything else has been ruled out and the best they can come up with is Somatization Disorder, then I say you're probably on the right track in contacting an LLMD.
It can't hurt at this point. And not that Somatization Disorders aren't real, but how common are they really. Lyme is very real and very difficult for the inexperienced to see beyond the lab tests, or at least it seems that way. I mean obviously the neurologist isn't concerned about you developing ALS or some type of spinal malignancy.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Just a note about medical records. I get all copies of everything from my doctor as I'm being tested and treated. When I see a new doctor - I take those records to the new doctor.
If you get updated chart notes to take to your new doctor and they have derogatory notes in them, you can take them out before giving them to your new doctor.
Of course, some doctors will insist that they get medical records directly from your old doctor. If those records are damaging you don't have to sign the release form you can ask your new doctor what they want that you haven't already given them and get them whatever they want - minus the derogatory comments of course.
If that's not acceptable, maybe the new doc isn't right for you.
Just my opinion.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Someone typed ABL?? Maybe they meant ALS?? I dont know.
One thing I do know is I reacted sort of violently with the doxy. Lost some mobility and speech with which I was not having any problems at all with prior to the doxy~ so that threw me way off~ was walking like a full force jack-hammer and still do off and on ever since the doxy, but NOT to the degree of when I was on the doxy; other symptoms also got worse, too while on it. I think I was just herxing, tho; and am not too worried about ALS.
I DID go in to my PCP when this happened, also...because I was scared out of my mind. He didnt touch me. He didnt know what a Herx was. I asked if I was herxing~ he said, what is that?? Yikes!! He asked how is the stress in your life instead???? Just sat in a chair across me and did nothing more. And because he didnt touch me (didnt examine me) I assumed it was nothing to worry about ~ yet, I was frustrated with the lackidasical concern all the same.
Yes, I have been pushing for Igenex testing now for a while, but so far the docs I have seen so far refuse that; saying Igenex is "Unproven" and a lure to prey upon us to get $$ out of us.
I am all for Igenex and will push the LLMD to let me do that.
Another thing~ the lady I spoke with at the LLMD office today asked if I had a CD57 done yet. As far as I know, no I did not. WOuld it show up on the lab results as CD57 or something else?? I dont think both the PCP OR the Infectious Disease doc I saw ever thought to perform that test. I cant see anything in my labwork to point to that, unless they have some other name for it.
Thanks for all the help everyone; it is appreciated Posts: 25 | From MD | Registered: Sep 2007
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Since your dr was testing for "lymes," it's not likely he is aware of this test.
So sorry you're having to deal with all this.... but welcome to the club. So glad you found LymeNet.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Thank you!! ABL~ anything but lyme!! Boy, I am still quite new to all of the terms and acronyms, lol
It is appreciated
I will look into the CD57 link you gave; thank you!
Posts: 25 | From MD | Registered: Sep 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by sickoflyme07: Someone typed ABL?? Maybe they meant ALS?? I dont know.
That was lyme-shorthand for the wastebasket diagnosis "Anything But Lyme."
I just want to note that while people shouldn't always assume that everything is from lyme (which can be downright dangerous!), if they have a history of tick exposure and a positive test, they should keep in mind the following:
Things that go bump in a neurologist's office that can SEEM like MS may not be MS. For example, oligoclonal bands in the cerebrospinal fluid. Could be MS, could be lyme. Could be both.
Demyelination of nerves, abnormal evoked potentials testing: Could be MS, could be lyme, could be both.
Brain lesions. Could be MS, could be lyme, could be both. (Also, could be neither.)
If you already KNOW you are positive for lyme (as you are), do NOT let a neuro talk you out of consulting with an LLMD due to presence of some (or all) of these things. Lyme treatment could be the thing that turns you around. It doesn't help everyone, but DOES help an astonishing number of people, as can be witnessed right here on LymeNet.
Most doctors are blissfully unaware of this. As most neurologists are. There's a great thread here somewhere called, "Are all neurologists goofy?" Recommended reading!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I actually would take it as a mixture of the doctor protecting his/her own interest, but also caring about a patient. Pointing out the two patients who had severe problems was probably done from a good place.
You always want to pursue other diagnoses with Lyme. The Lyme diagnosis should be done after ruling out other conditions.
New symptoms should always be investigated by your doctor. A good LLMD will do that. I get very worried when I hear people posting on this board about a new neurological symptom or chest or abdominal pain and attributing it to Lyme without talking to a doctor.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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adamm
Unregistered
posted
He definitely believes you're sick, but has been
exposed to too much misinformation about Lyme to
know that that's what with. It doesn't seem like
he's implying that trying Lyme treatment, which he
associates with "New Age" medicine, would be
harmful, but merely unproductive.
He's obviously not by any means malicious; he
just
wants to believe his teachers, something we should
all be able to do.
That being said, the ability to accept that which
runs contrary to one's worldview is certainly a
quality
that anyone in such an important capacity should
possess, and one
that I certainly consider a determinant of the quality of one's
posted
I'm confused by what your doctor means by IGeneX is "unproven." Unless something has happened, this lab is a legitimate lab. I'm sure if there was some monkey business going on there, they'd be shut down.
They may do testing that is not the accepted standard for Lyme but they also do western blots, which are standard and what most people get when using IGeneX.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
Lyme is still a clinical dx. Your "new" LLMD will make the dx clinically. The testing will be done for confirmation only. If Doxy makes your breathing more difficult, your LLMD will switch or add Rochephin as it works best in the chest area.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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