SPECT Scan - not Lyme?

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adey123
Regular Member


Date Joined Jun 2011
Total Posts : 24
   Posted 8/11/2017 7:45 AM (GMT -6)   
Hi everyone

This site has been a great help to me over the years - thanks for all the support!

After many Lyme treatments over the last 8 years in 3 different countries including IV and Hyperthermia all of which I haven't reacted to (good or bad, rarely anything resembling a herx) my doc suspects Lyme is not at play. Co infections have also been ruled out.

3 months ago I had a brain SPECT scan that showed hypoperfusion in frontal and temporal lobes. The radiologist also mentioned Lyme in the SPECT write up (which is a rarity). My EBV Elispot levels are also high. My doc's theory is that the high EBV created a false positive for Lyme on my Lyme Elispot and Western blot and that I never had it in the first place. This would explain why I don't react at all to ABX.

I know SPECT scans are quite popular in the Lyme world. Has anyone had one without having Lyme and discovered something else was causing the issues all along? It would be great to hear similar experiences!

Thanks

Adey

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1278
   Posted 8/11/2017 7:54 AM (GMT -6)   
I think your MD if full of crap. I have ben treating for over 7 and progress is slow at best. My SPECT was the only test that ever had a positive for Lyme noted. WB (except for pos IgM 23 band) and all Co tests were always negative. But we continue to treat anyway.

If he feels that you don't respond to ABX because you don't have lyme, and he has rules out co's, then something is still wrong with you. Maybe time to find another LLMD. Have you treated for Co's? Heavy Metals? BioFilms?

Post Edited (tickbite666) : 8/11/2017 7:57:40 AM (GMT-6)


PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 8472
   Posted 8/11/2017 8:12 AM (GMT -6)   
First and foremost lyme test are not proof positive of no lyme.

Igenex puts this on the bottom of their Western Blot tests:


Diagnosis should not be based on laboratory tests alone. Results should be interpreted in conjunction with clinical symptoms and patient history.
____________

Good Article

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 826
   Posted 8/11/2017 9:58 AM (GMT -6)   
I would check dental and parasite-often docs miss both

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 24592
   Posted 8/11/2017 10:03 AM (GMT -6)   
adey123 said...
Hi everyone

This site has been a great help to me over the years - thanks for all the support!

After many Lyme treatments over the last 8 years in 3 different countries including IV and Hyperthermia all of which I haven't reacted to (good or bad, rarely anything resembling a herx) my doc suspects Lyme is not at play. Co infections have also been ruled out.

3 months ago I had a brain SPECT scan that showed hypoperfusion in frontal and temporal lobes. The radiologist also mentioned Lyme in the SPECT write up (which is a rarity). My EBV Elispot levels are also high. My doc's theory is that the high EBV created a false positive for Lyme on my Lyme Elispot and Western blot and that I never had it in the first place. This would explain why I don't react at all to ABX.

I know SPECT scans are quite popular in the Lyme world. Has anyone had one without having Lyme and discovered something else was causing the issues all along? It would be great to hear similar experiences!

Thanks

Adey


So you said coinfections have been ruled out. Does that mean you only treated Lyme?

If that's the case, I suggest you try treating a co-infection (babs or bart) and see what happens.

My other suggestion is you go to one of the two top LLMD's (Dr. J or Dr. H) and see what they say.

So you were positive on the Igenex WB and the Elispot?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

adey123
Regular Member


Date Joined Jun 2011
Total Posts : 24
   Posted 8/12/2017 10:55 AM (GMT -6)   
Thanks everyone

Have tried treating biofilms and coinfections several times with no budge in symptoms. Also heavy metals.

Went to see Dr H's office in 2011 who recommended I get hyperthermia treatment.

I did have a positive wb and lyme elispot in 2009.

My current doc is probably one of the best I've and definately thinks there is an issue (it was his idea to do the spect scan) but doesn't believe in continued attempts at treating lyme as ive pretty much tried everything (which sounds fairly logical to me).

We both think there's a good chance something else if causing my symptoms, we just don't know what sad

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4350
   Posted 8/12/2017 3:22 PM (GMT -6)   
Use dna pcr ...spect sounds lymee to me i agree with tb666 .i use direct microscopy to view pathogens

logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 84
   Posted 8/12/2017 8:01 PM (GMT -6)   
Lyme can be very confusing as you well know. 8 years of treatment including IV and hyperthermia is a very comprehensive treatment and one would expect you to have had SOME reaction if Lyme were the culprit. It is always possible that Lyme or a coinfection triggered something else, but if that were the case you would think that Lyme treatment could reverse this process. Lyme is known by many to reactivate EBV, so you are faced with the question did Lyme cause EBV to be a problem for you, or have your symptoms been caused by EBV alone all this time. However over 90% of the population tests positive for EBV exposure, and it very rarely leads to problems in most people on it's own. There is almost always an underlying issue with the immune system that causes EBV to come to the forefront and present issues. There arent many infections that are known to cause EBV reactivation. AIDS and lukemia are among some others, but if you had those for 8 years, you would likely know.

Sometimes you have to go with your gut and fight to pursue what you feel in your heart is the true underlying problem. This is the case with many Lyme patients. I know this may be hard after 8 years of treatment, but you almost have to go back to square one and try to remember what it was like before being sick and try to identify any possible triggers. How do you feel about your symptoms? Did you have a lot of tick exposure? This of course doesnt completely rule out Lyme because you may not always remember the bite, and there is some evidence that it can be transmitted in other ways. I know in my case I didnt have any symptoms until shortly after being bitten by numerous ticks. I had a high white cell count within weeks of being bitten indicating some form of infection, so I have focused heavily on Lyme and I know in my in heart that my issues were at least started by a tickborne infection of some sort, so I fight to pursue this angle. When doctors try to attribute it to something else, I tend to doubt them.

There arent many people on this site who have treated continuously for 8 years. Its hard to give you advice as you have probably heard it all at this point and dont know what to believe. For most people, who come for information to a Lyme site, I would simply recommend to keep treating until they find the right combination, but after trying so long and seeing one of the biggest names in the Lyme world with no progress, I can understand your skepticism at this point. Keep in mind you are asking people who know or strongly believe they have Lyme, and who know how well it can hide and be extremely difficult to prove and diagnose, so we will usually assume Lyme in most cases just based on our own experiences.

You probably wont find anyone here who later found out that their symptoms were unrelated to Lyme, and if they did, they would not continue to visit Lyme sites and post here, they would then begin to pursue treating and learning about something else. Lyme can cause many different health issues from chronic EBV to MS, and officially many of these other diseases have no known cause, so there are a lot of people left wondering what caused their symptoms to begin with. Unfortunately this will continue to be a problem for many as long as the testing remains so unreliable. I do think it is unlikely to test false positive on both the EliSpot and the confirmatory western blot. The CDC uses this 2 step criteria for the exact purpose of eliminating false positives, and for this they are often criticized for actually rendering too many false negatives. You could possibly try further testing like the Advanced Labs culture test.

I'm sure with all the unreliable testing, that some people are treating Lyme or coinfections when in fact they may be suffering from something else. Certain doctors completely dismiss the idea of Lyme and others focus on it too much, so it can be very hard to get a realistic and honest diagnosis.

However, I tend to agree from a clinical standpoint that if you have been treating Lyme for 8 years, it doesnt make much logical sense to treat further especially if you havent realized any progress. But with Lyme you often have to throw logic out the window because this disease doesnt behave logically. You could indeed have Lyme and you could continue to explore why exactly treatment hasnt worked. We know for example, that babesia doesnt respond to Lyme treatment. Could it be mold or a detox issue. There are so many variables taht could impact treatment success This is why it can be helpful to get reassessed by different LLMD's from time to time to get different perspectives, which it sounds like you have done. You can never really definitively rule Lyme in or out, so you have to go with your own clinical suspicions. People do treat Lyme for years on end, but they usually notice SOME progress and continue to treat often times because when they stop, their symptoms will return, which keeps some people treating indefinitely. This doesnt sound like it's the case with you.

That being said, what does your current doc recommend? If he can help to treat your symptoms individually, thats great, but If he just identifies a problem with no given solution, that doesnt help you very much. He may attempt to use antivirals to get EBV in check, but again, in most cases there is an underlying cause for EBV reactivation and if that is the case you want to address that if possible.

You kind of have to go with your gut on this one. Thats all you can really do. Revisit why you suspected Lyme in the first place, and try to eliminate all the variables. If an independent radiologist and several other doctors have diagnosed Lyme, then you might question the one doctor who is saying otherwise. If you continued treating for 8 years, I would assume you probably had a good reason to do so. Try to remind yourself what these reasons were and go from there. It would be refreshing to learn that you were wrong this whole time, but it doesnt seem very likely based on your post, and if the root cause doesnt lend itself to treatable condition, you are still back at square one.

adey123
Regular Member


Date Joined Jun 2011
Total Posts : 24
   Posted 8/18/2017 5:28 AM (GMT -6)   
Thank you so much Blue Lyme, all of your words ring true. It's like you've read my mind beyond my initial post 😃

The hardest things to deal with is not so much the symptoms (which is tough enough) but the uncertainty of not knowing what I "have", making it even harder to explain to family, friends and my spouse. The labels often changed depending on what doc I see. The future is still as uncertain for me as it was 8 years ago.
My current docs thinks EBV could be at play, particularly since nothing else had made a dent. I'm on Valtrex and he's also recommended high dose Vitamin C. Looks like there's even less research and studies on Chronic EBV than Lyme. At least I have hope with my current LLMD. All the others have generally given up, perhaps they were too Lyme focussed and didn't see the larger picture perhaps?

I have a Neuro appointment on Tuesday. Interesting to see if they recognise the SPECT scan and look at my brain issues in more depth. Perhaps something else is at play that isn't an infection at all.

Having 2 kids under two I'm worried now more than ever and I don't want their father to end up being a vegetable who can't support them. I'm forgeting names, getting lost, forgetting entire conversations and it feels like the beginning of Alzheimer's at the young age of 33.

Thanks for the reminder to step back and go with my gut. It's probably worth looking at all my medical notes again and trying to connect the dots myself. In various tests through western medicine and other methods, immune system problems tends to be a theme although nothing previous treatments have really focused on.

At least if I found a label for what I have I can at least explain it to other people - even that would help deal with the loneliness of fighting something you don't even understand and only you experience.

Thanks again for the support and kind words smile

Adey

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35716
   Posted 8/18/2017 9:45 AM (GMT -6)   
I'm one that has had hypoperfusion of the brain in two areas, although I do have to say that I have not had a repeat SPECT scan to see if it ever reversed, mostly because of cost, but also because I feel like my brain must of recovered in order for me to be back in school....in my 50's!

I also have very high titers of EBV and although I'm still fighting those, the Lyme healed fully once, which is when my brain function came back -then I ended up getting reinfected again. I would say that at least for me, EBV had nothing to do with my brain issues - and, with testing so poor for Lyme, how can anyone say that any of the studies that have been done that haven't looked for Lyme (looking at EBV and other sources) can definitively rule out Lyme as a cause?

I was pretty upset over the findings of the Spect scan, so I set out to see if Lyme could cause it. There are actually quite a few articles that are very easily accessible online about Lyme causing hypoperfusion:

/www.ncbi.nlm.nih.gov/pubmed/9409364

/goo.gl/RGdhwg Third page, under Functional Brain Imaging.

jnm.snmjournals.org/content/38/7/1120.full.pdf

And those three articles were from just the first page of a Google search.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
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