As always, my brain SPECT scan is completely normal. Is this proof I don't have neurological lyme?
I'm starting to feel like maybe I'm crazy and all these symptoms are pyschosomatic! I mean how can a sick patient have pristine blood work, perfect cardiac work-ups, perfect pulmonary work-ups, neurological exams, etc.
If no system shows damage and no tests are abnormal, what's causing me to be ill? It's hard to comprehend. Did I just snap back in Oct-07 for no reason? Posted by METALLlC BLUE (Member # 6628) on :
It doesn't mean much. If it shows abnormalities, yup -- it's evidence. If it doesn't show anything, it doesn't rule out Neurological Lyme.
Posted by feelfit (Member # 12770) on :
My SPECT was totally normal. Zip, Zilch, nothing.
Good blood flow.
My brain MRA, however, was VERY abnormal. With beading and enlargment of the large vessels indicating vasculitis or a bacterial infection.
My blood work and cardic work-ups are also normal. I have severe neuro symptoms as you know.
This disease is just strange. You are not imagining your illness....
Feelfit
Posted by adamm (Member # 11910) on :
Yeah, although it's great to hear that your vasculature is fine, the illness still produces toxicity and neurotransmitter imbalances that can cause symptoms.
Posted by seekhelp (Member # 15067) on :
I think I'm at my limit for tests Feelfit, but out of curiousity, what type of doc orders a MRA? I know of MRIs.
The kicker is I'll get cancer from excess radiation trying to Dx Lyme. I've had too many x-rays and catscans. I have to draw the line.
MRIs at least are not exposing me to radiation. I have no problems with them.
quote:Originally posted by feelfit: My SPECT was totally normal. Zip, Zilch, nothing.
Good blood flow.
My brain MRA, however, was VERY abnormal. With beading and enlargment of the large vessels indicating vasculitis or a bacterial infection.
My blood work and cardic work-ups are also normal. I have severe neuro symptoms as you know.
This disease is just strange. You are not imagining your illness....
Feelfit
Posted by feelfit (Member # 12770) on :
Dr. M ordered MRA, it is essentially a MRI (same machine) but it looks at the blood vessels.
My MRI's read normal by radiologists, but the amazing M thought that he saw something abnormal, thus the MRA. He was right.
feelfit
Posted by seekhelp (Member # 15067) on :
You had me laughing when you said the amazing M. Posted by Jenny in MI (Member # 17225) on :
We should have a group appt with dr. m. would anyone be interested in something like that? I can ask him about it! maybe sharing info would help all of us and him put this all together?!
Posted by Hoosiers51 (Member # 15759) on :
Did you have positive lyme tests seekhelp? Even positive IgG? Were any of the Western Blots close to being positive? Did you test for coinfections, mycoplasma, etc?
I would be inclined to say the answer to your original question is no. You can have a normal SPECT and have neuro lyme, I would think. Seems logical.
If you suspect lyme, I would treat it some, and run some more Western Blots later. I had a CDC positive IgG from Igenex after doing the Salt/C protocol (warning: this protocol is dangerous for some) and also a positive babesia FISH from Igenex. I believe the salt/C brought these things out.
Later on, I had my first positive IgM from Stony Brook Labs while on super high doses of Amoxicillin.
Still later, I had a positive b. duncani titer while taking Mepron and pulsing artemisinin.
My point is that your tests may be coming back negative now, but later on treatment could provoke them out.
But if this is not the case, go with your gut. Maybe your condition could be due to other health problems not related to lyme. But PLEASE don't rule out lyme. Listen to your gut.....you seem like an intelligent person capable of figuring it out. Don't let others make you think you're crazy, but also don't let others convince you of something that isn't there. Believe what YOU think is the right answer.
[ 16. November 2008, 05:17 PM: Message edited by: Hoosiers51 ]
Posted by ticked-offinNc (Member # 15420) on :
I think the Spec Scan is only helpful if the techs and radiologist have experience in administering/interpreting this test. Many have no idea. You may wish to get a copy of your test on disc, and ask your LLMD to look at it, or send it for an out of house interpretation.
best wishes for your recovery
Posted by Hoosiers51 (Member # 15759) on :
yeah, that is true too. My LLMD only likes me to get them done at Columbia in NYC because he trusts the way they read them.
Posted by sutherngrl (Member # 16270) on :
I'm not sure that I understand why you need these test??? If you have symptoms of LD and nothing else is showing up, why not just find a LLMD that will treat you and see what happens. What is the point in all the MRIs and MRAs and scans, etc.?
Posted by seekhelp (Member # 15067) on :
Yes, I've treated now for 3 months of Abx. I had an IGenix WB showing:
IgM 23-25 ++ 31 IND 41 IND 58+
IgG 41+
CD-57 = 54
Babesia FISH = negative All commercial labs tested me negative for Babs, Bart, Lyme (except 41+ IgG), etc.
My gut says it may very well be a TBD. However, ENDLESS negative tests really make me second guess myself. Not one organ is functioning impropery, not one scan shows anything, etc.
I've had a couple doctors suggest panic disorder. My panic melts away when I feel better. My head pressure is there a lot, muscle tension, etc.
I think I have some issues with TMJ (treating with biteguard), and weight loss would help as well.
I just don't want to have the mentality a magic pill (whether Abx, Cymbalta, Xanax, etc. is the cure-all. That is stupid and naive.
Sutherngirl, why do I need tests? Well, what disability company or doc believes you when you say you're ill with zero proof? Good enough reason for me!
I venture 99% of LLMDs Dx someone with a TBD. No one yet has given me official stats on how many say, "well Joe, I don't think you have Lyme." There would go a nice payday.
FYI, I am seeing a LLMD. I was also seed by an ID doc.
quote:Originally posted by Hoosiers51: Did you have positive lyme tests seekhelp? Even positive IgG? Were any of the Western Blots close to being positive? Did you test for coinfections, mycoplasma, etc?
I would be inclined to say the answer to your original question is no. You can have a normal SPECT and have neuro lyme, I would think. Seems logical.
If you suspect lyme, I would treat it some, and run some more Western Blots later. I had a CDC positive IgG from Igenex after doing the Salt/C protocol (warning: this protocol is dangerous for some) and also a positive babesia FISH from Igenex. I believe the salt/C brought these things out.
Later on, I had my first positive IgM from Stony Brook Labs while on super high doses of Amoxicillin.
Still later, I had a positive b. duncani titer while taking Mepron and pulsing artemisinin.
My point is that your tests may be coming back negative now, but later on treatment could provoke them out.
But if this is not the case, go with your gut. Maybe your condition could be due to other health problems not related to lyme. But PLEASE don't rule out lyme. Listen to your gut.....you seem like an intelligent person capable of figuring it out. Don't let others make you think you're crazy, but also don't let others convince you of something that isn't there. Believe what YOU think is the right answer.
Posted by disturbedme (Member # 12346) on :
Seek - I know what you mean. I have tons of neurological symptoms as well. I mess up so many sentences while talking to my hubby or anyone - mess up words, switch around letters, etc. Though it can be humurous at times, it's also really annoying.
I also want to get a SPECT done and was going to ask my LLMD about it at the next visit, but knowing my luck, my SPECT would be normal too and I'd still be at a loss or wondering why the heck I had so many neuro symptoms and yet a clear SPECT.
Posted by seibertneurolyme (Member # 6416) on :
Seekhelp,
You have more bands than hubby has ever had. But I can understand wanting proof.
Hubby finally had an MRA done last year -- after about 10 MRI's over the years. His MRI's show 4 or 5 white matter lesions. The MRA did have one surprising finding. He is missing one of his crebral arteries -- probably a birth defect. But otherwise normal.
His SPECT scan was abnormal -- typical Lymie results of hypoperfusion.
Hubby won both his private disability and Social Security disability cases. It helps to have a diagnosis, but winning your disability depends more on having a doc who will put in writing that you are disabled and also statements that list how well you can function -- can you lift 10 pounds or sit at a computer etc.
Hubby did use a lawyer in both cases which does help as they know the rules.
People can be declared disabled for psychological reasons which have nothing to do with bloodwork results. A neuropsych eval could help with a disability case, but needs to be done by someone who is Lyme literate.
If you have not had a bloodslide then I would get that done before ruling out coinfections.
Either Fry Labs or Clongen Labs.
Have you had a Cd4a -- think that is the right one -- if positive indicates inflammation.
Bea Seibert
Posted by Hoosiers51 (Member # 15759) on :
I agree with what Bea said about getting disability....it is more about finding a doctor who will write up HOW disabled you are, not WHAT comes back positive.
If you have other diagnosises like Chronic Fatigue Syndrome, you should put those on there with the Lyme. Then, if you go before a judge and describe how disabling your symptoms are (or have a letter to describe them from a doctor who has seen you), it will be evident you are not lying.
All my judge had to do was read a description of my daily activities back then (i have now made a lot of progress): sleep 16 hours, mom comes home to cook me food, when awake, have terrible migraines, diasbling weakness and fatigue, unable to leave house, had to drop out of school, etc.
It should be noted that back then nothing had come back positive for me, when I was awarded disability. I was diagnosed with lyme back then based on an experimental Bowen test that doctors did not acknowledge.
Don't let it discourage you if you think you have Lyme, not having positives.
There is another test you should look into that could give you a clue to how "infectious" you are or are not: it is called C1Q Immune Complexes. I am not sure what lab does it, but if you or your doctor do some research you may be able to find out. In Dr. Singleton's book The Lyme Disease Solution, he refers to them as "Circulating Immune Complexes."
Okay, I actually just pulled my recent results out. It was done at Mayo Laboratories and they call it, "IMM COMP C1Q" My LLMD uses this as another diagnostic tool. Negative level is 4.4 or below, and I was 21.1. This is REALLY bad, according to my LLMD. Even a level of 5 or 10 is evidence of infection.
When my LLMD saw this, he said it is evidence of a serious, long-lasting infectious agent in the blood. However, we don't know if it is bartonella, lyme, babesia, or some other random long-lasting infection. It won't become elevated, however, if someone gets the flu or a sinus infection or something transient like that. I'm not sure if it would come back positive for chronic viruses, but my LLMD doesn't seem concerned by that, so maybe it wouldn't.
He said once you get better, it usually takes a month or a couple months for it to drop, if the infection was serious (like lyme). If he treats me with a bunch of drugs and my levels don't drop over say, 4 months, he starts to get worried and changes my treatment to maybe address another bug. Whether this is right or wrong, who knows.
The other thing that might make Immune Complexes come back positive or high is autoimmune disease like lupus I believe. BUT, if all your other autoimmune bloodwork panels come back negative, and this is still positive, that gives you a clue it is high because of chronic infection.
So you might want to give that test a shot. If the number is in the normal range, that would be evidence maybe you don't have high levels of active lyme, or maybe that your body isn't even recognizing or fighting it (maybe most of it is in cyst form). But I shouldn't say that, because I am not certain....maybe even if you aren't fighting it this test would still be positive, I dunno.
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