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» LymeNet Flash » Questions and Discussion » Medical Questions » To David 1097

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Author Topic: To David 1097
cigi
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Hi David -
You don't know me, but I have a question regarding the spect. I took in January and it came back moderate global hypoperfusion with heterogenity. I went to Columbia to clarify and they neurologist told me that with treatment retake in after 6 mos of rocephin and it should have cleared. 6 mos is up and I feel like a veg. Had a month and a half of mental clarity before this mess. Went to Hosp. the other day er because of sodium emergency and I told him re: lyme and hypoperfusion. He told me that after working a day in the er, he probably has hypoperfusion and had the attitude that lyme does clear up after treatment, especially 6 mos of rocephin. You have some knowledge of spects. The impression said it has been seen in encephilitis, vasculitis, medication can cause this and lyme disease. No psych meds can help this and am curiouos what your take might be. I know you're not a doc, but you seem to know a little more of the spect. I also had positive in the igm from igenex a while back, waiting to re-test. Stony Brook had me low positive and am at the point of not knowing what I have.

Thanks - if you have an idea of this hypoperfusion, please let me know. Nothing said frontal...the emotional thing is numb (meds), depression from all... we all have our cross to bear.

Take care -
Cigi

[This message has been edited by cigi (edited 08 July 2005).]


Posts: 320 | From Upstate, NY USA | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
janet thomas
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Hi David- In another of your posts you mentioned horses and infectious diseases. Would you elaborate, please.

I used to ride a good bit, before I became too ill.

Thank you,

janet


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david1097
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Hi guys

This is for the first questio, the second is covred in a second post.

Please excuse the spelling/typo's, If I corrected it each time it woud take me twice as long to write this stuff. I figure it is better to put twice as much info as opposed to 1/2 as many typing errors.

On the spect, A big problem with it is that it at present there are no set criteria for SPECT intepretation. What is know is that it is not normal to have hypo profuse areas scattered around the brain, but as far as text book medicien goes, that is all they can say... abnormal.... The clasical case of technology being able to move a lot faster than textbook medicine.

As far as drugs causing hypoperfusion,some drugs and stimulants (ie coffe) can create a generalized or regional reduction in blood flow but those are for the most part transient. To better determine the significance of what you see on the SPECT you also need other imaging. this will help rule out things like vasculitis. Note that I believe that hypo perfusion from lyme has been called Lyme Encephalitis by some med prefessionals.

Finally If you take two spect shots even a few hours apart before treatment and the hypo regions don;t move they (as far as I would think) are indicative of disease.

End of the day hypo perfussion? I have no idea, I just don;t wnat to be treated by a Dr with this problem (maybe that is why they alsways say "always get your surgery done first thing in the morning"

The Lyme hypo pattern is as far as I know also characteristic in that that are multiple areas, swiss chease like (hetrogeneius), not a large single zone (ie not homogenious) (this personal observation however s based on a limited number of Spects that I have seen) I do suppose though that after very advanced disease the entire regions could be affected resutling in a homogenous hypo picture.

As far as do the regions clear up, I believe that they do based on the most recent research done by columbia. Columbia at one time had a nice internet video of a presentation in which Fallon showed MRI and spect imagaes of patients before, after treatment and after relapse and second treatment. The spots definately cleared up.

I have also heard that many Dr's use SPECT monitoring for the monitoring of treatment progress, based on this alone I would think that the regions, at least on a large anecdotal scale do clear up with succesful treatment.


With the hypoperfussion, what is particulalry interesting is that not only is the perfusion decreased, the entire blood flow in the affected quadrant is reduced at the arterry level. This is as a first observation to radiologists is thought to be indicative of arterial occlusion (a VERY common disease). What is nore interesting is that the reduced blood flow must be at the microvascular level since even the highest resolituion digital subtraction angiogrpahy equipment does not see any abnormallities typical of vasculitis or occlusion. The conclusion is then that the problem must be at the microscopic level. I have not seen any research done on this, (ie post mortem microscopic investigation of know neurolyme patients). It would be an interesting study, in part becase some Dr's apparently use oral, non penetrating antibiotics with great success even for neuro cases, this based in the theory that Lyme resides in the walls of the capilaries, thereby casuing minor inflamation thgat is so small as to only close up the smallest vesscles.

It is also important to realize that the hypoproffusion can be very severe. As an example, in some european cases, the reduction in blood flow to regions of the brain has been so significant as to cause death by stroke. Fortunaltely these occurances are rare (or are rarely published)

Recovery...

Keep in mind that it has been documented many times that neuroliogical problems related to Lyme take a long time to clear up, even with curative treatment. This effect has been foolishly quoted many times for justification of 4 weeks of treatment, unfortunately it does not hold in many 4 weeks treatmetn cases since after the stop of treatment, things that should get better or at least stay the same, continue to get worse. (after the 4 weeks you are discharged and they lose track of you, as far as they are concerned, you are cured.) Still it does take time to recover brain function, likley because, as with any brain damage, it takes time for the brain to rebuild the neural pathways, very similar to what happens with people that have a stroke.

It is not entirely clear that the regions that were hypo profuse are actually dead or not, but based on first person experience I believe that each wave of symptom cycle kills a few more brain cells so the the effect is cummulative, just a bit at a time.

Effect of co-infection...

Again from first person experience I have noted some very interesting patterns of neurologic abnormalities. I have (so far at least) confirmed Lyme, babesia and bartonella. Whta i have seen is that the bartonella seem to cause a number of specific neurological problems, Lyme a different set and Babesia yet soemthing different. I also noted that Lyme comes in goes in cycles and that these are clearly marked by joint pain (which is not a bog deal) along with generalized reduction in cognitive ability. Once the peak of the Lyme symtpms is past, I get a day or two that are "normal" Ie I feel quite good, then this is follwed by a crash in which peripheral neropathy sets in. My theory on ths is that when the Lyme cycle comes it adversly affects the immune system via overload or otherwise. This I think opens the windows to other opertunistic infections that are present but not adequately treated. I have been told that bartonella is well know for creating neropathy and GI problems. After agressive treatment for bartonella, I have to agree with this because these problems have cleared with the treatment.

Babesia is also an interesting disease. It is extremely well documented as a tick bourne disease in animals. in fact there a re a number of vet labs that do PCR for different babesia strains. In animals it is know that babesia casues the red blood cells (RBC's) to release some type of chemical ( I don;t recall if it was an enzime or protein) that cuases the BRC's to stick together. This gums up the micro vascular network, particularly in the brain. In fact is you take say a cow that has bovine babesia and look at its brain after it dies, it will be quite red from effect. This has got to affect the function of the brain for sure. Since in most people the level of the babesia infection is much lower than a fatal case in a animal, maybe the babesia just plugs up a few of the capilaries, that adding to the neurolgical effect. It might be that blood thinners may help this situation but who knows?

IgM and IgG

In the IgM, transient return of IgM apparently does occur with late stage Lyme. Usually IgM, at least for a "classical" Dr means early infection, IgG means late or past infection. Still IgM appears to light up in a cyclical fashion with some that have Lyme. this I believe is docuemnted in a paper given by Nick Harris at Igenex, supported by other publictions.

When I first started treatment I was not at all convnved that I had Lyme, the neuro symptoms as compared to the other stuff where just too intense. After initial treatment the recovery was extremely signficiant and I continued to improve for a few months. I then started down hill again and finally found someone that knew about co-infections. I had not given much though to them prior to the decline. I now have a very healthy respect for them as they appear to be a big part of the picture.

This is getting a little long winded but I Hope I answered at least part of your questions.



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david1097
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Hi

On the horses. After some long disucssions with a verterinarian freind it has become fairly apparent that horses get a lot of nesty things from insects and the environent, including Lyme. This mainly becasue they are outside a lot. I also discovered that the vets that work with these animals also, by virtue of being the same enviromenet also get some of these nasty things. Unfortunately the types of things that you pick up are not your normal co-infection and are definately not typical to people. Still thay can be caught by people via insects that like to bite horses as well as via animal waste. Most of these things are subclinial in humans and smetimes in horses) but if you get run down or end you with something like Lyme where your immunue system gets hit, the subclinical disease can copme back to haunt you.

The problem is more accute in the south but apparently occur everywhere with large animal vets. Riders and those that frequently are in areas where horses go I am pretty sure will be at similar risk.

I can get more info if you would like, unfortunately I have used up my time quota on the previous post.

Hope that helps


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cigi
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Thanks David, I've been in hell since May big time and trying to see what happened. Docs are trying, but like everyone else feels, almost an experiment. It's a shame because these are lives.

Thanks again,
cigi


Posts: 320 | From Upstate, NY USA | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
   

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