posted
So my daughter had her spect scan last week and today our LLMD's secretary called and said that the results came back mildly abnormal.
Of course I said "What does that mean?" She replied I can't go over the results with you, but the dr would like to see you this coming Thursday to go over everything with us. I said can you give me any more info on what "mildly abnormal" means and she said all I can say is we have seen worse scans.
That surely did not make me feel any better. I know no one can tell me what that means, but maybe some of you could shed some light on spect scans that they have had. I have to say I'm freaking out a bit.
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
If your daughter has not been diagnosed then I say it is good news. Hubby's SPECT showed mild to moderate global hypoperfusion including both temporal lobes. The cause was listed as possible vasculitis, infections such as lyme disease or medications. That may not be the exact wording.
For us it was more proof that he has active tickborne infections.
Hubby has never even come close to having a positive Western Blot -- he has only ever had one band show as positive on many lyme tests from many labs. All other bands were completely negative -- no indeterminate bands.
Of course we were not thrilled that hubby has a brain infection -- we pretty much already knew that from his abnormal brain MRI's. But it is one more piece of ammunition to show the docs who say his symptoms of tremors and myoclonus are caused by anxiety or depression.
With adequate antibiotic treatment the scan should improve over time. Hubby has not had his scan repeated as he is still actively treating bartonella. Do plan to repeat the scan at some point.
If the doc knew enough to order a SPECT scan then you should be in good hands. Not all LLMD's will order this test.
Also note that if your doc thinks IV antibiotics are needed this abnormal SPECT scan may help with getting insurance approval for the IV's.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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My daughter has already been diagnosed with lyme, bartonella and rocky mountain spotted fever. She been receiving treatment since mid-November 2009. Just recently she had another round of lab work and her bart titer has gone up from the original titer. Her symptoms are getting worse and I'm just so worried.
She is starting to become depressed because she feels that she is getting worse instead of better. I guess we will find out more on Thursday.
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
Actually with bartonella an increasing titer could mean that the immune system is working better and is now recognizing the infection. Bartonella suppresses the immune system greatly.
If she has only been in treatment since Novemeber then you have just started on your journey. Normally it takes 1 or 2 years for treatment if not longer.
Sometimes too aggressive treatment can result in very severe herxes which makes it look like you are getting worse when that is not really the case. Please share your concerns with your LLMD.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I agree with Bea! Before it leaves, it sometimes seems worse than ever. IT took 1 1/2 years for my daughter to get over her co infections...and her last herx was so bad...that I thought it was getting worse...the next visit all were gone after that bad herx.
She also had the mild hypoprfusion...and the LLMD wanted to put her on a port and IV after the cos were gone...
But with detox and now adding healing nutrients, she is feeling so much better mentally.
We have never had another spect scan to see how she is doing...but since we are not going on the IV abx now...it's not worth even knowing...
As mentally she feels like it is gone...and no symptoms. Its time to heal the memory of lyme now for us. That will happen for you both as well...in due time.
So hang in there TLS...it is overwhelming when trying to help a sick and depressed child! YOu are not alone. YOU are doing a great job!
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
I am new to this and I realize this is somewhat off-topic but I wonder if anyone in the Lymes community might have some insight on how to deal with the effects of Lyme once it has penetrated and begun to destroy the nervous system. At this point every minute is torment for my cousin. Her autonomic nervous system is shot. All sensory input equals pain. She suffers from panic attacks, intermittent psychosis, extreme anxiety, insomnia. We are desperate. What can we do? She can't tolerate any sort of antibiotic regimen. Even some relief would be welcome. What about a heavy narcotic to knock her out for a few days and then, perhaps, her system could "re-boot?"
PLEASE, ANYONE, ANY IDEAS?
Posts: 13 | From Colorado Springs | Registered: Feb 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had a brain scan right after I was diagnosed. It showed 2 UBO's (unidentifed bright objects). I was glad to have proof that this disease had affected my brain. I knew there were some changes to my brain function.
Then I went to a total of 3 lyme doctors and 3 years later I was done with my treatment. That was nearly 5 years ago.
About a year or 2 ago I had to have a brain scan for some other reason. It was perfectly normal.
So, what I want to tell you is that your daughter's scan is typical for a lyme patient and, with good treatment, her brain (and her brain scan) will go back to normal. The scan is just documenting that the lyme disease is affecting the brain a little--probably by affecting the blood flow.
The scan is documented proof that "it is not all in her head" (ha) as many doctors have told lyme patients as they offered them anti-depressants.
Others with lyme have reported over 20 "white matter lesions" as they called them. We know lyme affects our ability to think, remember, sleep, etc. So, whatever the doc shows you is no cause for alarm. It is just documenting that the illness has had an effect on the brain. It is not a permanent effect, however. It is reversible with good treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Light - Thank you so much for your last paragraph. I just want to help her so much and I feel helpless. People around me just don't understand what she is going thru.
Thanks for everyone's support here...I don't know what I would do without it.
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
TF - I actually spoke to a friend of ours that is a neurologist and his exact words were "a spect scan is bullsh*&!!" When I asked him why he just kept repeating it.
He asked me what her symptoms were and I was almost afraid to tell him because I knew what he was going to say. And sure enough he asked if she had been to see a psychiatrist. I was infuriated at this point and just said I had to go and hung up the phone.
I don't understand why these dr's just don't get it. It is so frustrating!!!
Posts: 107 | From New Jersey | Registered: Nov 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, unfortunately the neurologist is our enemy when we have lyme.
A neurologist ordered my brain scan. The scan report discussed the 2 UBOs and said, "Lyme disease cannot be ruled out."
Nevertheless, the neurologist told me that "You do not have lyme in your brain! Do you hear me!! You do NOT have lyme in your brain." And, he was yelling this. (I had a positive lyme test from Labcorp.)
He treated me like a mental patient.
I said, "Doctor, how can you say that when the report says that lyme cannot be ruled out?"
"Well, I don't THINK you have lyme in your brain!" he yelled.
Last time I saw him. He sure wasn't going to help me get rid of my lyme disease. He refused to give me any medication and refused to say what my problem was. Get it?
Their job is to tell people that they don't have lyme disease!
They are siding with the Infectious Disease Society and sticking to their story that lyme disease is rare, rare, rare. And, that it is easily cured with a max of 30 days of doxy. (I had already had my 30 days of doxy when I got to him. So, it can't be lyme disease in my case.)
You can search this forum and find hundreds of horror stories like this regarding neurologists. So sad.
Still waiting for the day when the neuros and IDs have to accept the truth--that they turned away thousands of really sick lyme patients and told them they were crazy.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
TLS:
At some point in your daughters treatment...you will need to begin a form of detox...to remove some of her body burden...
this will help her gut heal...and she then can absorb nutrients.
Also her immune system is located in the gut...so this will add support to her immune system, lowering her body burden.
This is so important for her brain to begin healing and for depression to clear and for her to feel more balanced.
Unfortunately LLMD's aren't well versed on the varius detox protocols to help. This is not a cookie cutter aproach either, it is individual for each person of what needs to be worked on when. Suggest at some point you find a ND or someone who understands nutrition and healing the gut for Chronically ill people.
After 1 year of getting off abx after my daughters co infectins were gone...we started her detoxing...then recently added the liquid high potency natural multi vitamin/mineral/all in one supplement. With absorption, she feels no depression now. Needed to heal her gut to absorb the supplement.
It took a while to get to the point where this would now work. She has no allergies now either. There is hope...it has to go in steps. Trying all at once does not work as her body needs to be ready to accept the food so her brain can get the amino acids and minerals to function.
Sometimes taking supplements when still on abx does not work enough. They are not absorbed correctly and the brain is not getting fed. This makes the mental symptoms worse. This can heal.
You may want to post more questions about how others got their guts to heal...and get various suggestions depending on what therapies she is on for lyme.
Posts: 1009 | From NJ | Registered: Aug 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's nothing to worry about. It will improve and leave no permanent damage once some basic antibiotics -- like Tetracycline, or Doxycycline are used for about 6-24 months.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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