My sister- in-law Jan, emailed me last week with some lyme questions. She went through her symptoms and I sent her to the ER. She had over 17 symptoms..

They did some blood work, it came back equivocal..( no surprise there) . They also did an MRI and SPECT Scan.

She just emailed me the results of her SPECT scan..here is what she wrote:

The SPECT Scan said, Markedly heterogeneous perfusion of both cerebral hemispheres with patchy areas of hypo perfusion within the frontal, temporal and parietal lobes bilaterally.

Findings are nonspecific as described above but are consistent with the clinically suspected neuro-Lyme disease or vasculitis.

As I have never had a SPECT scan, I'm not sure what this means. Can anyone clue me in on what this means, so I can pass it on to her????

She is a nervous wreck and it isn't helping any that my brother is being a pain in the As*.

He isn't being supportive at all, and is telling her, that she is just going through menopause and that it's all in her head...

Then he told her that as they have been in Florida for 10 years, that there is no way she could have lyme as Florida isn't an endemic lyme state.??? ( they visit NH every July as well)

Ohhh, I wish he lived closer, I'd kick him where the sun don't shine.

He knows about the nightmare I (and my children) have been through with lyme, so I am very upset that he isn't trying to help find out what is wrong with her, and being more supportive.

Oh well, I guess I can kick my brother later, what I need to do now, is help Jan. So if anyone has any info on her SPECT scan results or Lyme in Florida, I sure would appreciate the help...

Thank everyone!

~Missy
 

And, I would venture to say...you are barking up the right tree.

By the way......I think I can fly to Florida.

lol

Trout
 

even a Duck metioned Lyme here...add the equivicol test and...well, duh.

Troutmeister

You buy, I'll fly.
 

Based on what you've said, she sounds like a lyme brain. So sorry she has to go thru this with a less than supportive spouse, but thank God she has you!!!!! When you are done kicking your brother's butt to the moon, send him my way.I haven't been getting enough exercise these days and would enjoy some kick aerobics!
cootiegirl

Thanks for the replies. Like I said, I never had the SPECT scan, so I have no idea what it meant.

Jan thinks that as I have lyme, that I have all the answers. I hate to disappoint her, but I actually know very little.....

But given her symptoms, I would say she defiantly has Lyme. Luckily the doctor she is seeing is a little lyme literate and it looks like he is willing to treat her without a positive test.

Thanks for the offers to help kick my brother's butt as well

They are suppose to come to NH in August and if he hasn't smartened up by then, I'll invite you all to my house for a " little as* kicin' party"

Thanks again, I'll pass the info on to Jan tomorrow..

~Missy

My kids have not been to NH and Maine, so now they can say they have been in every state on the eastern seaboard....

cootiegirl
 

Her infection is in the CNS and brain to the extent where it is limiting blood flow to the brain.

Some of her seventeen symptoms must be neurological.....?

This.. and an equivocal lousy lab test.. (plus the scan was not done at the centers most proficient at reading SPECT in Lyme)

Florida is highly endemic, and so is the rest of the east, which thry have visited or passed through..

She needs a very good LLMD. Not just a sort of literate one, and she needs someone who can interpret this and treat to cross the BBB.

I'm sure there must be articles here supportive of the SPECT results and the need to act.

Let us know if you need help finding them..

Mo

[This message has been edited by Mo (edited 21 April 2004).]
 

Really think your Sis in law needs a very good LLMD to figure this out.

Since she came to you..I hope she will listen if you provode her with the info..

Mo

I know this sounds ridiculous, but just send her links to lyme info and let it be. Try not to get involved because in the end, any negative feelings will end up in your lap. If she 'decides' that she doesn't have Lyme, your brother and SIL will label you a wacko radical, etc or worse.

I have family members with lyme and they have 'decided' that they either no longer have it or that they never had it to begin with. Any pressure from me to the opposite of this opinion resulted in major backlash. I know it will be hard to rein in the desire to help family members that you care about, but you need to save yourself. Give the info and then walk away. If they take it, they take it.

Jen
 

Trout
 

Just wanted to stop by and thank you all for your help.

I passed this info on to Jan, along with some research I did for her last night.

She emailed me her test results..not only is her lyme Igg high, but her Igg and Igm for Ehrlichiosis are elevated as well.

So I'm pretty sure given her symptoms and lab results that she has lyme and at least 1 co-infection.

Jan called me today and said that she is pretty sure she has lyme and is looking for a good Lyme doctor in Florida.

I have posted a request for LLMD's in Florida in General and seeking a doctor...please post if you have any names for me.

Trout and Jen,

I know what you are saying, I have had a few people approach me with a perfect bulls-eye and ask my opinion. I give it to them, and they still ignore it.

My motto is provide the information, and let them decide. I think Jan thought she might have lyme, but needed someone to back her up..someone to be on her side so to speak, as my brother is being such a jerk.

So anyways, she is looking into LLMD"s, so that's a giant step in the right direction.

I have to run and get my records organized for the kids LLMD visit with Dr.Jones tomorrow..wish us luck..

Thanks again!

~Missy

I have a friend that is very sick with lyme. He knows what I have been thru and what I'm doing to get well. I've given him the info he needs, but he's just attributing his problems to 'old age' since he was treated for 3 weeks on abx and was pronounced 'cured'.....

cootiegirl
 

sorry to hear about your sisterinlaw i had a spect scan and it is showing basically the same thing on the right side of my brain, the thalmus is being affected by poor circulation i have alot of neurological problems not as bad as they used to be what probably bothers me the most is extreme blurred vision in the right eye with perception problems i can't drive it looks to me as if we are going to crash. the thalmus controls all your senses so my llmd informed me this is causing my balance problems, dizziness, vision , speech the whole gammet, i have improved with all the herbs and vit. along with doxy, and zithro iv a year ago i couldn't even talk it was like i had a stroke i now walk with a walker i used to use a scooter all the time so i have had improvement but it is verrrry slowwww. good luck to you and your family.

karen

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waiting and praying for a miracle