posted
I ended up on this site a week ago after getting a blood test done here in Europe which came out positive on the IgM Westernblot.
Yesterday I went to meet a dr. in the Lyme department (yeah right) of a large hospital.
First off I'd have to say that he was kind and sorry he couldn't help more and at least referred me to another possible dr. in the area.
Just wanted some feedback on some of his opinions that confused me...
I showed him the test and he discounted it as being most likely unreliable,unknowable, i.e. negative.
I then wondered why I was asked to take a blood test that's unreliable anyways??
He told me that they get tons of so called positive tests where people think they're sick and it's innacurate.
What ya think of this.....As proof he said they did a study on hunters here.
A big percentage of the hunters tested positive for Borrelien antibodies yet didn't suffer and symptoms.
On that arguement he excused my positive results.
Next I showed him a long history of symptoms, illnesses that mostly have gone untreated:
i.e. Ebstein Bar, Swollen Lymphnodes resulting in a biopsy done, irratable bowel syndrome,
bugged out feeling in eyes, eye strain and spasming, drooping eye lid/s, cold hands and feet,
leg fell asleep for many days/weeks once, Tinitus,
yearly blood in stool, was diagnosed with winter depression and tried many antidepressants (untreatable), anxiety,
Swollen tongue (recently) that showed up in MRI,
experienced a little depersonalization and obsessive compulsive disorder type stuff...
He said none of the above symptoms indicate Lyme disease. Any feedback on that one? Is it all in my head?
I'm not trying to convince everyone I have Lyme, just looking for answers.
He then said that the Tick bite I experienced prior to most of these problems couldn't be 'the problem'...
because my test shows that I tested positive on IgM (recent infection) but negative on IgG which would have indicated a chronic infection like my story above.
I know other articles say the opposite. With so many opposing views I just don't know who to believe or trust.
I'm long winded so I'll leave it there. Thnx.
Posts: 128 | From California | Registered: Apr 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, you can trust him. (I would not, though.)
Or you can educate yourself -- and find a doctor who is ILADS-eduated and literate regarding lyme & tick-borne diseases.
Please refer to past links in your previous threads. Take the time to read them as many explain the "controversy" what IgM has do with chronic lyme, etc.,
First - today - watch film "UNDER OUR SKIN" on HULU.
There are two schools of thought. His is one (that if IDSA).
ILADS is another. Refer to the thread "WHY YOU NEED AN ILADS doctor"
I sure hope you can attend that ILADS conference in your country in a couple weeks.
Is that NEAR you?
You can access your previous threads by clicking onto your name, then check posting history.
posted
Thanks Keebler. Yes, I'm aware of the controversy a bit and have watched trailers of 'under our skin' on youtube.
Interestingly, this dr. made a comment on certain treatments and testing in Germany that doesn't use 'proven' methods.
He called it in his eyes 'criminal' because they charge people thousands and they don't get better but end up coming back to him.
I don't believe him because he didn't give me any solid answers either.
I just had a taste how controversial this whole thing is.
But, you are right, I gotta get to all those articles you gave me at the start and yes, I'm planning on getting down to that conference.
It is only a couple of hours away. Thanks for your help and patience.
Posts: 128 | From California | Registered: Apr 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm so sorry you are going through this. It is beyond crummy on so many levels.
I don't suppose he had an answer for you, then, on what he thought was the underlying cause of your symptoms?
Did he offer a treatment of any kind?
He is wrong about so much he said but neither my hands nor energy can sort that out phrase by phrase. He is classic, though, for the uneducated doctor.
I know it does not make sense how they can line the walls of reputable medical institutions but it is happening. And it's ruining lives.
As long as we can read, we can educate ourselves and find the best experts possible (and even if we can't afford them, we can still be proactive in many ways).
So glad to hear you are planning on attending the ILADS conference. Hope you can get in for the actual sessions.
Maybe stay with a friend or relative nearby to save costs? Or ask the hotel or rooming houses around if they offer any medical discounts for attending a medical conference.
On the way home, I hope you can take a mini-vacation (even if just a few hours) to clear your mind and enjoy a bit of springtime.
If possible, stay out of town for another day or two so that the conference will have time and quiet space to settle in. If you rush home and get right back to routine, you may not absorb as much. It takes some time to take this all in.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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My son was tested recently and was told the same thing...he has all the same symptoms and aso had 7 lymph noddes removed for testing and liver scan and kidney scan cause there is a cyst in kidney, but they aren' t sure what it is.
He has been sick for all his lif ..bitten at age 3 and it was a deer tick and then only treated for 2 weeks of abx...he is now 26.
I was just diagnosed as having it for at least 20 years and will be seeing a good LLMD...i am making an appointment with the LLMD for him. I just don't think the PCP knows anything about lyme.
My suggestion is to find a good LLMD....good luck to you.
I hope you get the help you need to become well.
Posts: 78 | From connecticut | Registered: Mar 2012
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posted
it's clear in my experience with dr. after dr. that they are passively aggressively playing dumb.
to be schooled for years of chemistry, biology, anatomy, etc...and then to use the argument that many test positive but show no symptoms...??
many with STD's are asymptomatic yet others aren't and are treated by these same dr.s..
keebler is right, find an LLMD. you tested positive, unless the lab tech botched the test, there aren't false positives when it comes to lyme.
Posts: 184 | From taking pills | Registered: Oct 2011
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Interestingly, this dr. made a comment on certain treatments and testing in Germany that doesn't use 'proven' methods.
He called it in his eyes 'criminal' because they charge people thousands and they don't get better but end up coming back to him.
I went to this guy in Germany. I didn't want to wait for proof his methods work, I just wanted to get better. It took more than just the three weeks I was there to get well, but I did get well ..... and I never went back to another doctor for Lyme Disease since.
The only doctors I see are for my Armour Thyroid prescription and for my gyn checkups.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I'm reading the info your sent me. I'm glad you've found an answer.
I'm still a bit in the confusion mode as what to do.
There are so many therapies out there not excluding abx of course.
Even though Germany is close I'm hoping to get help closer to home because it would be added stress on the family for me to leave.
Posts: 128 | From California | Registered: Apr 2012
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posted
You're welcome! It is tough on the family to leave. As you can tell by my name, I have six kids, so it was a difficult family decision, but I really wasn't much help at home, so three weeks away didn't matter much anyway.
At the time I went, my husband said that if I came back and could just go to the grocery and cook dinner daily, he'd consider it a success. That is how little I was doing at home.
There may be doctors who do the therapy closer to you as there are more doctors in Germany doing the treatment now. I don't know about Austria, but maybe Dr. W would know.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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