posted
I saw my Internal Med. Dr. yesterday and with everything I told her she wanted to admit me immediately to the hospital.
She said she thinks I have cognitive issues going on (well DUH)!!! Actually, I absolutely love her. She at least jumped on this and said this is what we need to do.
I saw the Neurologist last night. Waiting to be rolled down for my MRI. I ask for an fMRI or a SPECT. He said this will tell us what we need to know????? Pray he is right.
Also getting a spinal tap today. I begged for them to give me something prior because the one he did last time hurt like h&**.
Please say a prayer for me. I know, I know, I know these are not LLMD's, however, it is a step in the right direction at least.
I will have the tests run and in hand for when I am able to find an LLMD.
Scared in STL.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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posted
Good luck hun! Will be thinking of you
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
So sorry!!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Best of luck to you! Hang in there! Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Consuelachacha: Please say a prayer for me. I know, I know, I know these are not LLMD's, however, it is a step in the right direction at least.
I just hope you are not going through these painful tests for nothing. Honestly, there isn't really a point to most spinal taps for Lyme Disease .... unfortunately, many go through them for no reason.
Please post in seeking a doctor to find an LLMD near you. There are people with lists who can refer you to a doctor.
Good luck with the tests.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
They MADE ME go through 2 spinal taps. Absolutely worthless.
Posts: 743 | From New York | Registered: Apr 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Hang in there. At least you got some one willing to try and find an llmd. One minute at a time.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Hang in there. At least you got some one willing to try and find an llmd. One minute at a time.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Remember to Smile
Unregistered
posted
Our dear Consuela is in a "bad place" now!
We spoke by phone this afternoon, and she was in tears. Per chance (a "God-incidence") I'd sent her a text just as they were taking her for the spinal tap. I couldn't convince her to refuse the procedure.
Her ID duck is insisting she doesn't have Lyme and Consuela is at wit's end.
Please, all those with more time on LymeNet: Conseuela is a single mom on disability Medicare and doesn't have funds to travel out-of-state for care.
Is there a travel fund anywhere for Lyme patients in need? Maybe she should ask her church for travel $$$?
Do you recommend she post in Seeking a Doc for LLMDs who take Medicare patients from out-of-state, then go from there?
imho, some members on this forum would volunteer to host her in their home for a day or two around LLMD appts. Do you agree?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, if you are reading and have not yet had the spinal tap, more questions need to be asked.
First, it is NOT a valid test for lyme. Not at all.
Why are they doing a spinal tap? What are they looking for?
You can say "no" at any time if you do not think this is needed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- She wrote that she is "scared in STL"
that's St. Louis, Mo. (as I also recall from some past posts).
Yes, there are other reasons to do a spinal tap, especially in St. Louis. However, if they are just checking for lyme, we know that won't go anywhere.
Actually, since they are doing it, I sure hope they check other infections, besides lyme, that can cause encephalitis or encephalopathy. Here's hoping something good comes out of this - that some other condition is found and easily treated.
But this is the second spinal tap. Hope this one was not a painful as the first one. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hope they are telling you to stay flat for 24 hours (?) after this, or risk a killer headache.
Haven't had one myself, but this is what they are saying should be done, if you should have a spinal tap.
Posts: 8430 | From Not available | Registered: Oct 2000
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Remember to Smile
Unregistered
posted
Please pray and brainstorm for Consuela.
Yes, she's in a hosp in St. Louis. We just spoke again. Says she's "aggravated, depressed, and discouraged."
She had the spinal tap because her GP Internist thought it would reveal a lot. Consuela understands as much about Lyme as a chronically ill layperson can in a month, but is not well-versed on Burrasano's Guidelines. She did have knowledge of Dr C's recent lecture, though.
The ID duck has been horrible, complaining about tests run in the past by the good rhuematologist who'd dx Consuela's Lyme disease, etc. ID duck quacked so much this afternoon that he put her in tears. ID duck says it's just psych issues, but we know otherwise. She doesn't need any more baloney, she needs a wise LLMD to provide appropriate treatment.
Consuela must be on her back in the hosp tonight due to the spinal tap. Her laptop is with her, so i trust she'll when she feels able.
She likes her local GP Internist. This internist believes Consuela has CNS involvement now and admits to not knowing much about Lyme. Seems this GP could be mentored by a willing LLMD? Consuela calls this internist "a wonderful doctor," so maybe she could get some local help over time.
I urged her to post in Seeking forum and also to print out Burrascano's Guidelines. She still had not printed a copy for herself. I think that's vital. Also suggested a copy of Burrascano for her wonderful GP Internist.
Thanks, all for your support, encouragement, prayers and ideas for our friend Consuela ChaCha!
posted
Spinal tap is what was the deciding factor that convinced my ID that I had lyme. The tests came back with elevated protein levels in the CSF, which was a clear indicator of infection.
This test along with the WB was the true indicator that Lyme had penetrated into my nervous system.
Spinal test maybe not for everyone, but it was great for me. No pain no headache afterward nothing.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
It would be great if her GP could see Under Our Skin. Then read Dr. B's guidelines. If Consuela does not have a friend nearby who could loan the DVD, I'd be happy to send mine.
Best to you Consuela. God bless.
Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
It sounds like you got lucky bigstan. I here that it doesn't work out for most people. It just gives them an excuse to deny coverage.
I'm glad that didn't happen with you.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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onbam
Unregistered
posted
Neither a spinal tap nor an MRI can rule out Lyme. Plenty of patients with Lyme in the brain have normal results on both.
Bb is almost entirely in cystic (spore) form in the CSF, and thus not displaying the antigens that will produce a positive spinal tap.
Sorry to hear about the IDiot. I hope you can get the help you need soon.
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posted
I feel for you Consuela. I was in your shoes just 3 months ago. For the umpthinth time I have had another flair up, this time worse and longer than ever before. I ran from GYN, to GI, to Internal Med, back to LLMD. All tests were normal! No surprise. I can no longer be in denial. I have Lyme disease and I do not need a test to prove it anymore. I do not want to do long term antibiotics, have tried herbal protocols but finally broke down and bought a doug coil machine. First time I used it at frequency 432 for less than 30 sec I got terribly ill, could barely move and had mod pains everywhere. The best test of our time. Yes, if frequency 432 makes you sick, then you have lyme. I had two of my friends use the same frequency. They do not have lyme. They did not feel any affect.
Posts: 21 | From california | Registered: Jul 2008
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posted
Plus I was in the ER twice, one CT scan and one spinal tap. All was normal. The ER doc told me I didnt have acute lyme because if I did my spinal fluid would have 300 count of WBC and mine had 0. Of course my LLMD emailed me and said that was absolutely not true, that first of all I dont have acute lyme I have chronic lyme and most importantly, lyme follows no certain patterns. I have vowed I will never go back to an ER because of the truely uneducated ER docs. What a joke, they know nothing about lyme disease. A colleague of mine was recently bit by a tic and she went to the ER and they gave her one does of ABX, not two weeks, not 6 weeks but one dose. What a joke. And she wouldnt listen to me. Its like people that have no idea how devastating this disease can be. If they did they wouldnt mess around with just one dose.
Posts: 21 | From california | Registered: Jul 2008
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quote:Originally posted by ptbrisa: I feel for you Consuela. I was in your shoes just 3 months ago. For the umpthinth time I have had another flair up, this time worse and longer than ever before.
I ran from GYN, to GI, to Internal Med, back to LLMD. All tests were normal! No surprise.
I can no longer be in denial. I have Lyme disease and I do not need a test to prove it anymore.
I do not want to do long term antibiotics, have tried herbal protocols but finally broke down and bought a doug coil machine.
First time I used it at frequency 432 for less than 30 sec I got terribly ill, could barely move and had mod pains everywhere. The best test of our time.
Yes, if frequency 432 makes you sick, then you have lyme. I had two of my friends use the same frequency. They do not have lyme. They did not feel any affect.
Breaking up the post for easier reading -
Posts: 13171 | From San Francisco | Registered: May 2006
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quote:Originally posted by ptbrisa: Plus I was in the ER twice, one CT scan and one spinal tap. All was normal.
The ER doc told me I didnt have acute lyme because if I did my spinal fluid would have 300 count of WBC and mine had 0.
Of course my LLMD emailed me and said that was absolutely not true, that first of all I dont have acute lyme I have chronic lyme and most importantly, lyme follows no certain patterns.
I have vowed I will never go back to an ER because of the truely uneducated ER docs. What a joke, they know nothing about lyme disease.
A colleague of mine was recently bit by a tic and she went to the ER and they gave her one does of ABX, not two weeks, not 6 weeks but one dose. What a joke. And she wouldnt listen to me.
Its like people that have no idea how devastating this disease can be. If they did they wouldnt mess around with just one dose.
Breaking this up for easier reading -
Agree, ptbrisa - I've been working hard on the doctors here, and have gotten one ER dept educated and one dental school is getting educated.
Speak up and tell them! Give them brochures if you have any.
Posts: 13171 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity.
. . . .
========================
A lumbar puncture is not needed for any of these, yet important to consider in the diagnostic process:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
My head is spinning just trying to remember everything I just read. I want to respond to each of you and your comments.
My BFF remembertosmile has been a Godsend.
Yes, I am home from the hospital. Yes I am the same. Yes the ID quack said verbatim what all of you told me he would say. VERBATIM!!!!
Yes the spinal tap was stupidly done. I was talking to remembertosmile when they were ready to wheel me down. I now know this does not show up in bodily fluids.
I see my General Prac. Dr. next week. She is AWESOME!!! I have printed the 37 page "Advanced Topics In Lyme Disease" for my and her reference per advice from smile.
I have already checked the "symptom" pages.
My Dr. will do any and everything in her power to help me to get well. I am confident in that.
You are all so very right in everything you say. I wish I had a LLMD. I wish I knew what co-infection to fight first.
I am hopeful my Dr. will give me antibiotics needed for Babesia. I do not want to get her into any trouble for prescribing "stuff" for reasons not medically "in writing".
Currently I believe Babs is my biggest problem.
Can I work on treating one co-infec. and move to the next, then move to the Lyme? Or will breaks in between cause me to go back to square one? Perhaps I will post a new topic with this question.
Apparently if I am going to have to treat myself I am going to have all the help and info I can get.
Once again, thank you to everyone for your thoughts, prayers, suggestions, and love sent. It is truly appreciated.
Oh yes, a post regarding Dr. C I saw from....ummm....maybe sixgoofykids. I did contact his office soon after I was dx. It took 8 days for a return call and of all times I was not home. They did not call my cell as I requested if not at home #.
Signing out for now. Printing this thread for my Dr. next week. Pray she will have time to read all of this info I will be taking her.
Luv to all.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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