posted
My mom was recently diagnosed by a doc with no lyme experience. She has had symptoms for 20 years and remembers the EM rash but has had a negative blood test. I want her to get an imaging study, is this a good idea? and if so is it just for diagnostic purposes or would it help with treatment and monitoring etc. Is MRI or SPECT better. Please help I am trying to make these decisions easy for her as she is badly affected cognitively and psycologically.
Posts: 2 | From Georgia/Michigan | Registered: Nov 2005
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Your Mom is lucky to have you and I know you'll find help here. Welcome.
What kind of test did she have? If she could get a test from The Bowen Lab she would have alot better diagnostic response. Typically what doctors use for testing is very inadequate.
My concern w/a MRI or imaging tests similar would be if they diagnose MS or Alzheimer's and get off track from Lyme Disease which has been shown to be a causitive agent many times over in both diseases. After that they may give her a label and not keep the Lyme Diagnoses.
I don't know much about your question but I see there are no answers so I wanted share what little I know and other's will be along to help you shortly.
Bless you for trying so hard, I know it's very stressfull. Take care,Curley
Posts: 982 | From Florida | Registered: Feb 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I had an MRI done 2 months into my symptoms (no one knew it was lyme at the time). My MRI was normal.
I had a SPECT scan done a year and a half into my symptoms (we were thinking lyme was the cause of my issues at the time). It did show hypoperfusion consistent with lyme disease.
SPECT scans are not diagnostic for lyme, but can show that lyme is a possibility. See www.columbia-lyme.org for more info.
MRIs can show brain abnormalities, which is important to know....but I don't think a radiologist reading it can say "this is lyme"....
You said your mother was recently diagnosed....with what? Lyme??
I would have your mother evaluated by an LLMD. He may want to order both a SPECT and an MRI. Good luck
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
My husband is 17 months into Lyme. When his consultant suggested an MRI,we felt it was a very difficult decision to make. We were worried that it would show lesions which would then be misdiagnosed as MS but there was also the possibility that there was something even nastier than LD lurking in there. All in all, we felt it was worth having it to give us peace of mind. It was done 3 weeks ago and was totally clear - so in retrospect, it was the right decision.
quote:Originally posted by elise: or would it help with treatment and monitoring etc.
I don't think it would make any difference in this regard.
I too, am proud of your efforts on behalf of your mom!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Elise.
What a beautiful name!
How wonderful that you are helping your mom through the process.
As for your mom's negative blood test, don't trust it for beans unless it came from IGeneX, Bowen, or another Lyme-specialist reference lab. Definitely NOT Quest or one of the run-of-the-mill labs used by most doctors. Those labs typically don't test all the bands. That is, even if they get as far as doing a western blot -- most docs quit after a negative ELISA.
Other posters are right that you should get her to an LLMD - a Lyme Literate Medical Doctor. He will diagnose her based on symptoms and presentation -- not on test results.
As for MRI's and SPECT scans, they're not really necessary, unless you have a particular need for them. In my own case, I needed to get an MRI because my head hurt so much I thought perhaps I had a brain tumor! Fortunately, I didn't, but that's what finally got me on the road to the right diagnosis of Lyme after about a year of trying to figure out why my head was killing me (among other things)!
Once your mom's in treatment, expect improvement.. literature has suggested many times Alzheimers is really Lyme, too. Prepare her and YOU for the inevitable declines (Herxheimer effects) on the road to improvement, and hang in there.
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
As I understood what Dr. J said and MRI shows structural abnormalities of the brain while a SPECT shows functional abnormalities. Both my daughters MRIs were normal, but her SPECT showed alot of problems with hypoprofusion. This was consistent with the cognitive issues she was having and with a lyme encephalopathy. It did not dx the lyme, just supported it. But this kind of scan is also seen in other like illnesses, so it is not definitive for lyme.
Good luck,
Posts: 55 | From USA | Registered: Sep 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Both MRI's and SPECT's are so expensive. Does your doctor know how to interpret them? Will the results affect treatment decisions?
I haven't heard anyone here say that a SPECT scan changed the way their doctor treated.
MRI's may show "unidentified bright spots," which are scarring in the brain. In my case, I had 6 of them, but nothing was recommended. If they occur in a certain area, the doc might think she has Multiple Sclerosis.
I'd say wait until your mom has a doctor who will know what to do with the results.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
It all depends on the symptoms. If they are all nerological in nature imaging will be quite useful.
Despite the common belief, Lyme and MS lesions as viewed on asn MRI, while similar to a certain degree are usually quite different. MS lesions have particular patterns and frequency of occurance and disapperance. Lyme is different in the the lessions are typically persistent and sometimes disappear with anti biotics. MS lesions are nore common in the periphery of the ventricles (so much so that a special MRI sequence is used to detect them) Lesions alone DO NOT indicate MS or LYME. There are other things such as stroke, and UBO's (unknown bright objects) that many many people have, especially older people. Most of the time these UBO's or small lesions will be dismissed by a neurologist or radiologist.
Now for the more useful stuff. Lyme has associated with an encepalaopathy that causes many neurological symtoms. This is readly visible on SPECT if you know what you are looking for. SPECT (single Photon Emmision Computed Tomography) can be used to view the blood flow distribution in the brain. When this distribution shows areas of reduced blood flow then there will likely be some neuroligical deficit. This being said, The findings of reduced blood flow (hypoprofusion) is NOT a definative diagnitic tools for lyme, It is only supportive. Other brian infections can cause similar findings, as can the use of certain drugs, food and drink. Basically if you are looking for a tool to provide definative proof then these are not it.
MRI can also be used to measure the blood flow in the brain as well as to determine what if any degeneration is occuring. These techniques are MRA (Magnetic resonance Anigiography). Be sure that if MRA is done, that the blood flow be measured using quantitaive means, not just an image, The second, degeneration monitoring technique is the use of MRS, or magenetic resonance Spectrosopy. This tehcnique measures the chemicals in the brain and can detect the destruction of brain cells.
Again these two methods are NOT definative for Lyme but can be used to support a diagnosis.
Finally, in this situation what would I do. As it turns out, i was in this situation and elected first to do a MRI screening test (this is the one typically used for MS and Brian tumors). This will give a picture of what is going on, (a tumour or occluded arteries, etc. are always a posibile symptom source). For me, nothing (but UBO's) showed up so I went to Spect.
With spect major issues where noted. Note that you can also do MRS and MRA while the regualar MRI is being done. If you go for the MRI, then ask how much more these would cost (It should be a minimal increase, just a few more minuts int he machine).
In the end if you find proffusion problems, then the cause should be determined. the region of proffusion deficit wouldbe expected to correspond the the symtoms. The casues can range from range from infection (lyme is only one of a bunch, many of which are also tick bourne), virus, auto immune, or physical (blocked arteries - ie carotid and circle of willis etc.)or chemical/drug induced.
If there are no imiaging abnormalities then you might be looking at other things like the various (and not at all understood) degenerative brian diseases (Alzhiemers, Walegoran degeration, parkinsons plus symdrome, lewy body dimentia etc,etc) there are many..any things that can go wrong with the brain. There is also phenomima know as Paraneoplastic symdrome, a brain disorder casue by a distant cancer.
Brain problem are very hard to figure out. So to help, you need to have a good LONG TERM chronology of events over time, a symptom history and a good symtom summary. Fevers, night sweating, joint pain, and a host of other symtoms should be noted, no matter how distant or semingly benign. Rate the syptoms on a scale of 1-10, with 10 being the worse. This type of information will help a knowledgable Dr quite a lot.
On the other hand some Dr's will discount you as another hypocondriac, SO IF AT ALLPOSSIBLE GET YOUR LONG TERM PHYSICIAN TO WRITE A REPORT CONFIRMING THE PROGRESSIVE MATURE OF THE SYMPTOMS. TO DO THIS YOU WILL NEED SOMEONE WHO HAS SEEN THE DETERIORATION FIRST HAND. *THIS IS VERY IMPORTANT SO IF AT ALL POSSIBLE TRY TO GET THIS*.
Armed with a valid documented observation, most Dr's or specialist will not just brush you off without serious thought.
Sorry to be so long winded, I hope this helps.
In the end you will need to see someone who knows what they are doing. LLMD's are ussually very good at this type of stuff becasue they use a broad range of medical knowledge in order to deal with all of the various unknown and UNKNOWN patogens that are carried by ticks.
Posts: 1184 | From north america | Registered: Feb 2003
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