Was wondering how many people actually got a diagnosis from CSF or an MRI or other brain scan? or if Lyme readily shows up that way. Will an LLMD order those tests to rule out other problems that might be going on if it's not Lyme? Need to get our daughter tested, but not positive she has Lyme. Thanks.
Posted by desertwind (Member # 25256) on :
Yes, my previous llmd did order a brain MRI to rule out any other condition. Glad she did as it turned out I had /have Chiari Malformation which required two brain and back of skull surgeries.
Not everything is Lyme related and it is always a good idea to check for other things along the way. Yes, I had Lyme but also chiari malformation that required surgical intervention.
Posted by TF (Member # 14183) on :
I got a positive lyme test from LabCorp. Then, my PCP sent me to a neurologist when I wasn't cured with his 30 days of doxy.
The neurologist ordered the spinal tap. It's what they do!!! When lyme didn't show up in the spinal fluid, he yelled at me that I didn't have lyme in my brain! He yelled it.
He also ordered a brain scan. It showed 2 UBOs (unidentified bright objects). The report said that lyme disease could not be ruled out. Still, the neuro yelled that I didn't have lyme in my brain, and that was the end of the relationship.
So, this is the way most of us get these tests. Lyme doctors generally don't order them. Read in Burrascano that lyme antibodies rarely shows up in spinal fluid, even if the person has advanced encephalopathy. So, that is why lyme doctors don't use this test. See this quote:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease!" (page 8)
If the lyme doctor believes that the patient has other problems going on that are not related to lyme and its coinfections, most of the time they will tell you to go to another doctor for those problems. The lyme doctor just wants to treat the lyme-related problems, as this is their specialty.
See this quote about SPECT scans helping to differentiate lyme from psychiatric problems:
"SPECT scanning of the brain- Unlike MRI and CT scans, which show structure, SPECT scans show function. Therefore SPECT scans give us information unattainable through X-rays, CT scans, MRI’s, or even spinal taps. In the majority of chronic Lyme Borreliosis patients, these scans are abnormal. Although not diagnostic of Lyme specifically, if the scan is abnormal, the scan can not only quantify the abnormalities, but the pattern can help to differentiate medical from psychiatric causes of these changes. Furthermore, repeat scans after a course of treatment can be used to assess treatment efficacy. Note that improvement in scans lag behind clinical improvement by many months." (page 6)
Hope this helps you.
Posted by crmc (Member # 4207) on :
Thank you for the helpful info. Especially the part about the SPECT scanning. I don't see much reason to waste time and money on tests if antibodies show up less than 13% of the time.
We do bother our doctors with all this "foolish" talk of Lyme, don't we? I never had one actually yell at me, but they did their best to convince me I was wrong, but in the end they were the wrong ones. Guess Babesia and Lyme wasn't so rare in Florida after all.
Posted by crmc (Member # 4207) on :
Oops, sorry for the double post.. I will have to look up Chiari Malformation, those surgeries sound like no fun. But you are right, everything should be looked at so something more serious isn't missed. I know I have a tendency to blame everything on Lyme. (it usually is, but you never know!)
Posted by lpkayak (Member # 5230) on :
My recent mri had white matter changes The radiologist said it might be lyme The neuro said it couldnt be cuz i had had more than a month of abx
Posted by crmc (Member # 4207) on :
Thanks for the replies. Sounds like it will probably be better to skip the neurologist and get the lyme tests done first.
Posted by sugarjo62 (Member # 41896) on :
I had FIVE MRI's and all showed normal degeneration for my age, no growths or spots on the spinal chord, etc.
The only good thing about seeing the neuro was that we were able to rule out quite a few other possibilities...
Posted by GretaM (Member # 40917) on :
The neurologists...well I only had the dis-pleasure of seeing one neuro several times.
Apart from having low fevers every day, a full body spotted rash, excrutiating headaches, loss of speech and coordination, bells palsy in my face, and loss of reflexes on my left side, full drenching night sweats, blurry vision, memory loss and fainting spells for 44 days!!!!...
He diagnosed migraines. And recommended botox.
And made me feel like a village idiot and a hypochondriac. And he exchanged a few "looks" with my dad. Those looks replay in my mind weekly when I am feeling down about myself. His dismissive behaviour damaged me emotionally.
And got upset when I asked questions about a 44 day aura...
It was the last "specialist" appointment I ever hope to have.
And the worst part was that I could hear his other patients who went in before me and he dx'd them all with migraines and recommended Botox.
A one-trick pony, who lines his pockets with an extra $140 "admin fee" every time he injects botox into his patients.
No thank you.
Posted by Keebler (Member # 12673) on :
- Forget getting tests done first, first, a clinical evaluation is in order. As I recall, she has a positive band #41.
Her symptoms are classic for advanced lyme, babesia, maybe bartonella and erhlichia. At this point, she needs to be seen - in person - by an experienced and up to date LLMD. Then, she / he can figure out what tests stand the best chance at unveiling.
But you don't need at test to tell you a burning building is on fire. The clues are right there. From your previous post, I am certain she has lyme and other TBD. I went through the same thing and I guarantee it's like worse than she will even tell you, partly because there are just no words to describe it and she may even want to shield you from it, or keep some dignity in light of all the doctors who are calling her crazy when she is not.
She has a brain infection. Please don't waste time on any more doctors who are destructive to her.
A LLMD can also suggest other tests that may be of help. A SPECT is often more helpful than an MRI but, even then, burning building on fire, clues are right there to see.
Now, I can fully understand if money is the issue. If so, still, somehow, address the brain infection must be done. There are some supplemental protocols that may be able to at least contain the fire . . . a rife machine, etc. Some way.
I have never been able to be treated properly and I've been housebound for 5 years, very ill for 20 years now, I've had to piece it together with very little. I've studied this in detail. Your daughter's symptoms mirror my own, 20 years ago. I've read of dozens others with advanced TBD who had symptoms exactly like your daughter describes.
Her life is in danger, now. I hope you can find a LL doctor to help you sort it out. That band #41 didn't come from nowhere.
Good luck. -
[ 11-01-2013, 03:17 PM: Message edited by: Keebler ]
Posted by betty1939 (Member # 18240) on :
When I first became ill, I had 4 or 5 MRI's and atleast 4 lumbar punctures. The neurologist found lesions in my brainstem and pituitary gland.
The lumbar punctures did nothing for me except to reduce the head pressure temporarily.
My honest opinion it was not helpful at all, but still glad I did it because then I was able to move onto to something else.
I did and received a lyme and babesia diagnosis 9 months after I became ill. I've been treating now for 4 years, not better completely, but better than I was when I first became ill 5 years ago.