feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Went to my SECOND recommended Lyme Doctor on Thursday.
Reported to him with a positive (9) bands IgM from Igenex.
He did not offer any treatment. Said maybe the lyme test showed disease that isn't active. Tested me for other obscure diseases...lots of them. 14 vials of blood.
Also took a look at my MRI that received a "Normal" report from the reading radiologist and said that to him it looks abnormal at the brain stem. Scared the poop out of me!
He ordered another MRI, MRA, w/contrast, and a SPECT scan. Did not schedule a follow up appt.. Said that they would call me as results come in.
I guess that he is ruling out other things first before addressing LYME. He kept speaking of "stroke".
I have had head sensations for 15 years with 3 normal brain MRI's . While it feels like I may be having a stroke, I haven't had one yet. Now I'm really freaking out!
I have many migrating symptoms and just want to get well. Why w/ the positive test, no treatment?
Now it is more waiting. I tested positive back in August, been sick for 15+ years. Scared to death.
Posts: 3975 | From usa | Registered: Aug 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Fit,
Sorry to say, that does not sound like an llmd to me! Anyone with a positive blood test and symptoms along with history I think would normally be treated by an llmd rather than told to wait. I am not a doctor, but my understanding is that while there are many false negatives, a positive test is pretty conclusive.
Did you check for llmd's names with the LDA and in this forum, Seeking a Doctor's section? Please try again, your health is worth all the effort! Many of us have had to go to more than one doctor to find a good one, to say the least.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I'm sorry your appointment did not give you any assurance. It sounds like a very scary experience to me.
From my own experience with "Lyme" doctors (I went to 2 non-LLMD "Lyme experts" before my LLMD) that it can be frustrating, belittling and absolutely discouraging.
I hope you got a timeframe for when the different results will be available. Maybe you can call them and ask them more specifically how things will proceed from here and why there is no followup appt. scheduled.
I know that different LLMD's have different approaches. Some like to do tons of testing, and other don't. Some will take a positve Western Blot and order spinal tap, neurocognitive testing, etc. to verify the Blot results!
I a way, I think it is good that the doctor is trying to be thorough, although giving you the information about your scan results and having him reorder new tests, has got to be hard to take in.
Please be kind to yourself and take care to give yourself extra good care. It will help with the stress. You can always ask for more information. It is frustrating to be ill and have someone not be specific with you (I have been there with undiagnosed Lyme for 7 years). At least you have some action going on and maybe you will get some good information and treatment.
Take good care Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Feelfit,
I have to agree with Vermont_Lymie. You need to get to a Lyme specialist. Although I understand a doctor wanting to rule out all those other things and it will help with your peace of mind, you also need on lyme treatment with a test result like that.
Is it possible that you could see this doctor along with a LLMD? I wouldn't think that treating your lyme while doing the types of test they are discussing would be covering up any results you may get from this other doctor. Just a thought.
I'm so sorry you are going through this. Please keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Is this doctor a member of ILADS? I'm not a doctor but I'm more than a bit puzzled about why someone with an IgM CDC highly positive WB would not be started on abx right away.
I agree with Vermont, this doctor does not sound like an LLMD to me either. Make sure they are a member of ILADS. I went to a doctor that supposedly knew about lyme too and he told me my WB showed an old infection but that I didn't have it anymore. I knew that wasn't correct so I made sure my next doctor was a member of ILADS and I've been getting appropriate treatment since then.
I'm so sorry you are dealing with all this frustration. Hang in there, it's worth pursuing.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Is that doctor from just north of Detroit? Thanks.
Posts: 31 | From USA | Registered: Mar 2007
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bettyg
Unregistered
posted
fit,
please send me a PM, PRIVATE MESSAGE, it's the 2 people standing together icon, and give me the full name, city/state of the dr. you went to.
i have nationwide list and will check to see if the are onthe GOOD LLMD LIST OR NOT!!
i'm thoroughtly disgusted with how you were treated and DENIAL!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I too, agree with the others here.
I am a Speech Pathologist and have dealt with several brain stem strokes.
The brain stem holds your swallowing center.
Any injury to that area could result in problems with swallowing.
I mean not being able to swallow your own spit.
I would trust the docs who read the MRI's and have concluded no insult to the brain.
I guess you are scared.
Please pm Bettyg and let her run the "LLMD's" for you.
You need to get the right treatment from the right doctor.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Yes, this Doctor is just North of Detroit.In his defense, he did seem very thourough. Why do you ask?
I do feel that he should have said " I see something not quite right on your MRI, let's repeat it. " I wouldn't have worried so much.
Geneal, are your brain stem strokes a result of Lyme? Were they detected on a MRI? I do not have any trouble swallowing. I do have intense head pressure, intermittent lip and teeth numbness. And once my left great toe was numb for 4 months.
I also have spacial judgement problems.
Yes, I expected to begin receiving treatment based on symptoms and very positive Western Blot.
He said Igenex is a good lab, but that every test is almost always positive for Lyme. And that makes him worry.
Not a member of Iliads.
Thank you all for responses
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Geneal, sorry, I now see that you have dealt w/the brain stem strokes through your profession and that you have not had a stroke. Sorry, I didn't comprehend at first.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
It is possible to have more than one thing wrong. I mean you could have Lyme disease as well as something else.
After my mom was diagnosed with multiple sclerosis, anything that went wrong with her was attributed to her MS. She had a slipped disc in her neck and they kept insisting that her pain was due to her MS. Well, a surgeon finally listened to her and performed surgery on the disc and her pain was significantly lessened.
-------------------- 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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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I do realize that it would be entirely possible to have something else wrong.
However, why ignore the positive WB?
I am very happy with having any test offered, except a spinal tap, which he also mentioned.
Posts: 3975 | From usa | Registered: Aug 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
You really need an ilads doc. other docs. are waste of time, money, blood, and spinal fluid.
IGENEX does get alot of positives since they specialize in TICK Disease testing. and If doctors suspect lyme they would send to IGENEX.
Best wishes in your journey to health.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Feelfit,
My neighbor, who had an engorged tick removed from his ear tested negative via Igenex.
His wife, who never saw a tick, was CDC positive through Lab Corp.
Please find a LLMD who is a part of ILADs.
You will immediately see the difference.
I know that spatial orientation is not specific to brain stem.
A numb toe isn't either.
Brain stem is the "small brain". The original part of your brain.
Controls things like breathing, swallowing, moderating body temps, etc.
Now I am not saying that it isn't possible that this could have happened.
I just find it suspicious that radiologists (who go to medical school for over 8 years) missed
It and this doctor didn't.
BTW, I was born in Wayne County Hospital. I am originally from Michigan.
Miss the snow. We don't get much of it here in Louisiana.
Please find a LLMD who knows the value of an Igenex Western Blot and
Get on the road to getting better.
We are so fragile already with being ill and looking for answers.
I think to come out and say you've had a stroke would have made me have one in this doctor's office.
Is this doctor's specialty neurology? Radiology?
Neuro-psychology?
Hang in there. Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
It makes no sense to me that he didn't start you on abx...but then I am not HIM!!
In defense of non-ILADS drs, mine is not one and he is an incredibly good LLMD!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Geneal- Infectious Disease. Again, I must say that this Doctor did seem thourough.
When I ahd blood drawn at the hospital the phelebotomist said that " people have been sick for a long time and Dr. always finds out what it is."
I guess that I'll wait and see (again).
In the interim I guess that I should line up a LLMD with a good reputation.
Suggestions appreciated. I have homes in both MI. and FL.
Thank you all, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my two cents. i hope i word this right and don't start a big problem.
i totally agree in dr b's treatment plan and everything on the ilads site.
however, in helping people in the last few years, i have run into docs who say they are ilads docs and they are doing some really wierd things that i don't understand.
also-like tutu (i think) i have run into some fantastic non ilads docs who do a great job on their own, or in consultation with llmd or until they feel they need to send you to a llmd for some reason.
what doesn't make sense is to not start you on abx while continuing the testing. also-your response to abx can give good info on dx.
i have learned to be wary of every doc who says s/he is ilads. if they are not beginning with dr b's protocol and acting consistant with the ilads website i would be very careful.
it's really important to hear from MANY others who have been satisfied with this doc. sounds like betty can help with that.
take care-and i hope everyone else does not think i am "bad-mouthing" ilads. but many real ilads docs are aware of this problem and trying to figure out what to do about it. (as if they don't already have enough to do!)
take care. lp
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
An easy way to sort out IDSA drs from ILADS drs:
If you're getting a referral from your PCP, and he is sending you to a "Lyme specialist", ask him, Does this specialist follow IDSA or ILADS guidelines?
If he doesn't know, he's probably sending you to an ordinary infectious disease specialist who treats according to IDSA, and you might as well not waste your time.
My husband's PCP agreed to address my "Lyme hysteria" by sending husband to see Allen Steere. I said, "He's one of the biggest problems." And the PCP looked at me incredulously and said "Allen Steere is the GURU of Lyme disease!"
So, don't think you are getting a real LLMD if a PCP sends you to someone HE/SHE considers to be a "Lyme expert
Good luck! Lorima
Posts: 74 | From MA | Registered: May 2007
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