posted
My rhuematologist seriously hurt my feelings the last time I was there, and I debated posting the exchange on here. However, I really want some answers and opinions, and you folks are the best there are at helping those of us who are struggling.
Sometime in late September, I was at his office bc I needed refills, and I took that time to update my med list which led me to explain the Lyme Diagnosis I was working through. Next, this gentle man went off on a tangent that there is no way I would have Lyme in GA. Wrong State, Wrong season, wrong symptoms, wrongg everything!
I showed him my initial test for Lyme from Quest which an ID DR. said was Lyme when compared to her clinical findings. (Lyme Antibody Screen was high, 2 IGG titers high, 2 IGM titers high--including 23)
Later, she ran two confection tests by Solstas 3 months apart which showed very high IGM positives for RMSF. You would think that clinical diagnosis and thes labs would support a Lyme Diagnosis even as unreliable as these tests are.
Instead, He insisted they were false positives and he would do his own "Lyme Test AB w/Western Blot" through LabCorp. I argued that I had been on antibiotics for 8months (3 of those being IV) and did not think he could accurately test at this time. He said that my info was wrongand not testing bc of antibiotics is a Lyme myth. He drew the blood anyway.
I got word through my GP that the test he did was all negative, and I did not have Lyme. He apparently wrote her a strong letter reiterating why he was against Lyme and said if I still think I have it to visit Emory ID clinic. (such a jerk about it)
Well, I got home and looked over my results from his set of tests. Sure enough, all of the titers were negative, but on the very first sheet it said "Lyme Disease Ab, Quant, IGM (abn: high)". What does this mean exactly when everything else showed absent?
Right now, I am with an LLMD and plan to bring all of this to him to review. I am sticking to treatment, but it is a daily struggle to believe any of these doctors. Do I really have Lyme?
What about these test results? And can you even test while on antibiotics? What about while on long term NSAIDS that supress inflammation? So many conflicting views.
-------------------- Amy
Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I would have thought that is saying that the IGM was positive, with high antibodies, so not sure how to sync that with "all titers negative".
Did you authorize the roomy to disclose your private health info to your GP, or did he violate HIPAA by doing so?
Posts: 1927 | From se usa | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You did not / do not need any more lyme tests. But, sadly, the new set could affect any insurance coverage you might have with certain medications for lyme.
I'm sorry that you had a new set of tests done but sounds like you were bullied to do so.
I kept trying to make other doctors "be" brighter about lyme. Big mistake. It took a long time for me to understand that I could not be a patient ever again for any doctor not up to speed, even if not about lyme treatment.
You are giving too much power to someone ignorant in this matter if their opinion hurts your feelings. This is not about feelings. It's about working with only those doctors who are capable. This one clearly is not. For many reasons.
As long as you want his acceptance, you are toast.
You hire a professional to do a job. That's the task. The goal is that they guide you with the best knowledge possible. If they can't do that, why pay them big money to medically abuse you?
If you see him just for NSAIDS, there are far better and safer things to take to help manage pain.
Does he have the name of your LLMD? Was it listed on any other the tests you showed him? If he has the name, please call your LLMD and advise him of such so that he might be proactive in case of trouble.
Stay strong in knowledge. Stick with the doctors who know about lyme / TBD. If they do not, they cannot possibly treat you for anything -- as it so overlaps.
If a doctor is strictly IDSA minded, that's not going to be a good situation. Detail below on the vital differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Again, you did not need a new set of lyme tests. It just does not work like that. There are no false positives but there are false negatives. Some reasons why:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"And can you even test while on antibiotics?"
I've tested positive while on antibiotics, so it's possible. I've also tested negative while on antibiotics.
If your immune system is a mess, you might not even be able to make the antibodies.
Also, labcorp doesn't test for ALL antibody bands for Lyme.
Your rheumotologist if ridiculous. I hate this guy and I've never even met him. He's so disrespectful forcing you to take another test.
Is there any way you can refills through your LLMD? Is there anyway to avoid dealing with this jerk?
"Lyme Disease Ab, Quant, IGM (abn: high)"
I think that might be the Elisa test.
Labcorp doesn't test all the Lyme-specific antibodies, so you can definitely come back as no titers because Labcorp isn't looking in the right places.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, back to the "hurt feelings" - in all kindness, just don't go there. I know it's rough.
Many doctors have had me in tears for various reasons. MOSTLY that they would not HELP me, medically. I could have cared less about any kind of friendly atmosphere or hurt feelings. I was very, very ill. They just tossed me out the window. So tears for that, for my very life threatening state and being disregarded, medically.
And, looking back, I see it can be a bit co-dependent trying to convince them or trying to just hope they would understand. If you need to convince a doctor of anything, you are in the wrong place with the wrong agenda and it's likely only to go wrong.
Their power can bully - as it sounds like with this guy. And that's wrong. It is abusive. But you don't have to take it. You know better - or will soon as to why it just does not pay to pay doctors who are not capable.
Lyme / TBD, very complicated. Not going to ignorant doctors anymore. Simple. Just don't.
Ask at your area or state lyme support groups about the GP or other kinds of doctors you may need who are at least lyme aware, even if not treating. Ask your LLMD.
There is also a lot we can do for ourselves to manage symptoms. Liver support, adrenal support, etc. -
[ 11-13-2014, 01:39 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I would never go back to a doctor like this. A "gentle" doctor does not interfere in a specialty that is not his. He is questioning an infectious diseases doctor?????
And yes, he could very well make trouble for your lyme doctor if he has that person's name. The rule is to never give out a lyme doc name to any other doctor. You need to be a lot more proactive here and knowledgeable about the politics of this disease, or you and your lyme doctors will suffer. And then other patients will suffer if the lyme doctor is attacked. Anyone who reads this forum for more than a day or two should be getting that message and behave accordingly.
If you need other doctors involved in your care, just don't tell them anything about lyme. I don't show the meds on the medical history forms or the diagnosis. Works so much smoother. Some people will say you should always reveal the meds, because their might be interactions, but that kind of thing can easily be checked by a pharmacist or even on line.
These are dangerous times.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please be sure to call your LLMD today and alert him if that doctor has his name, a copy of any tests he ordered (as his identity will be on every test ordered) - so that he has a head's up.
Even if the rheumatologist has a list of the prescriptions ordered by your LLMD and know what pharmacy you used, it would be easy to find out the LLMD's name.
Here's detail on why you do not need another lyme test. See the Western Blot explanations here:
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- And, to understand more about the risk all LLMDs take, please watch UNDER OUR SKIN today. Before you do anything else.
I have to stop - hands just can't type more. but I hope someone posts the link or look on HULU. The politics of lyme must be the first lesson for anyone with lyme. That documentary is excellent in helping you know how to proceed.
good luck and take care -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
On 22 March, 2014 you posted this thread: Topic: Please Explain False Positives
------------------ You say that you still question your test results and if you have lyme.
Many replies back in your previous thread explained this matter - you might want to go back and read some of those so that
if you are ever in the presence of another doctor who says there can be false positives, you will be better educated & prepared for how to handle that - or how to just avoid being in such a position.
It can take a while to figure all this out. There will be stumbles along the way but hopefully, the path will become clearer. Stay strong inside. -
[ 11-13-2014, 02:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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