We spoke with our daughter's neurologist after her recent MRI & he would only give us limited info over the phone as we are going back in in a few weeks for an EEG & he will give details then.
He did tell us that she has "prevalent, but not really widespread, demyelination in the white matter of the brain." But he would not go into any details about what the implications are and if it reversible. He did say the only treatment was to continue with the antibiotics the LLMD had her on, so we were happy he was supportive of that. He also said that the results were "typical of a Lyme patient".
Any thoughts on reversibility of this process and the implications of these results? We almost wish he had not given us any info as to have to wait for several weeks with this scanty amount. The suspense of waiting for the next test is difficult to live with.
She has actually been feeling better lately. Her constant fever is down from hovering around 102 to just above 100 and she is much more like her old self. She is currently on Ketek, Ceftin, Cholestryramine and a variety of supplements. We are hoping a PICC line is not in her future, but her LLMD is not ruling it out yet.
As I don't know much about this, I'll leave you in Tincup's hands. Take care!
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It's my understanding that from an MRI, noone can tell whether what they're seing is hyper - or hypo perfusion.
Maybe Durmater will come on and speak to this topic.
But I know 2 Lymies, that have neurologists at Mt.Siani AND Harmouth Hitchcock arguing over what their ever changing MRIs really mean.
SO I don't think anyone can answer your question positively, since only a brain biopsy (and no ones's goning to do that) can really tell you what the exact damage is.
Based on my 2 friends MRIs - both had >35 sites that were abonrmal, and now they have 2 or 3 that are still hanging on - Their MRIs were like shorting a string of christmas tree lights- each time they had an MRI the locations and number of lesions changed.
All the arguing over what their MRIs meant - by the top guys on the East Coast- made me decide not to even get one.
[This message has been edited by bpeck (edited 08 July 2005).]
Brain lesions on an MRI are not related to hypoperfusion usually -- that only shows up on a SPECT scan which measures glucose uptake and thus bloodflow through the capillaries.
Brain lesions can be caused by many things which include MS, Lyme, celiac disease and even Alzheimer's. I am sure there are other items that are missing from this list.
In Lyme disease the lesions or areas of increased signal intensity could be caused by actual inflammation or demyelinazation which involves actual destruction of nerve cells.
The new book, Healing Lyme goes into great technical detail on the inflammatory cascade and quinolinic acid which is thought to be the brain neurotoxin responsible for actual damage to neurons. Other related theories revolve around NMDA receptors and the glutamate pathways. There was a fairly recent post on this within the last 2-3 weeks.
You can get the doctor's office to fax you a medical release form and get a copy of the test result faxed to you now if you don't want to wait for the appointment. Or sign the release with the testing facility instead of the doctor.
My husband has several brain lesions and also mild cerebral atrophy as a result of his Lyme disease.
EEG's will not add much to the picture. Often seizure meds are ineffective because it is either inflammation or a biochemical (metabolic) problem which causes the seizure-like episodes and those meds don't really address those problems.
My suggestion is to make sure your daughter is taking the B vitamins and folic acid to help with nerve function and also the good fats to help with both inflammation and to rebuild or repair any actual destruction of brain cells.
Also COQ10 at high doses (400 mg and up daily) will cross the blood-brain barrier and act as an antioxidant to reduce lipid peroxides which is a measure of the destruction of the fat in the body and especially the brain which is over 50 percent fat. A book that will explain all this is "The Better Brain Book" written by a neurologist and former neurosurgeon who is doing FDA trials of glutathione for Parkinson's patients.
Good luck and e-mail me privately if you want more info. My computer is in the shop, but I get to the library a couple of times a week.
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Sorry for the delay.. but others have provided good information while I was down stairs chasing grapes around my plate.
Having been here for years I have watched this process from beginning to end for many folks.
To date I have NOT seen a case where the white matter lesions got worse or more lesions showed up after APPROPRIATE antibiotic therapy.
I have seen MANY cases... including my own.. where the lesions were lessened and/or were gone later during therapy... or when therapy was over.
In other words.. in MY opinion.. proper therapy for the infections appears to reduce or eliminate the lesions.
I also feel.. MY opinion... children have a chance of seing the most improvement.
Also.. the areas affected are not wide spread.. according to him. That means less damage or affected areas of the brain.
Sooooooooo.. that is good news.
Now.. you didn't ask about this.. but I am sharing it anyway.
"we are going back in in a few weeks for an EEG"
I do hope you are taking a gorilla to that appointment and are NOT planning to put your daughter through that test.
And this is MY opinion.. but I am trying to share what I have noted in the past to help save your little one from more problems.
Ok.. please follow me here.
At this point you already have a Lyme diagnosis.
You have started treatment with a good doctor.
You have an MRI base test to see if things get better inside the brain.
You already KNOW the Lyme etc. can cause neuropathy in the limbs. Heck, even the CDC and ducks admit that!
So.. please consider this...
Why do the EEG now?
MOST folks don't question this order from a neurologist.. and IF they do it is always after the fact! Cause by then they have figured out it is a useless test.. and it hurt!
Here are some thoughts to consider..
1. It is a nasty test and can be VERY painful. It can take hours.. depending on how many areas are tested. NOT fun to do or as a mother.. to watch. You will NOT be appointed mother of the day by your little one after that appointment.
2. It is often used by sadistic ducks to prove there is no nerve involvement and that you are just nuts. The other use would be to check nerve function after a limb break or severing.. which is NOT the case here.
3. It can miss problems very easily and the results are very similar to reading an MRI. It depends on the lab doctor and is what they interpret... Lyme literate or not. It is NOT a conclusive test by any means.
4. To do this test on someone who is already sick can make them worse... MUCH worse.
5. There is a risk of being exposed to additional infections in the hospital/office.. and/or by the insertion of needles into the skin.
6. It costs money.. yours or insurance. Eventually insurance will try to put the hammer down on you all and say NO more. So just because they pay now doesn't mean that additional amount won't be seen in the total picture when you may need other worth while tests or continuing treatment.
7. If it was conclusive.. which it isn't.. or was needed to rule in or out something SERIOUS... which it isn't.. it MIGHT be worth considering. But that is NOT the case here.
8. If nothing significant shows, the results can be used against you if you ever need to be reimbursed from insurance for treatment later. Any negative tests can be used against you for denials.. so do remember that.
9. If they do one now.. they will probably want to do a follow up later. If your daughter went through the first one in pain.. I don't want to be around when you tell her she has to do another one. Wild horses couldn't drag me back there... and my guess is she may feel the same.
10. You can TELL the doctor if there is numbness and tingling as a symptom. You can say it is worse or better too. If they must use this barbaric test to prove it (as if you were lying about it?)... ESPECIALLY on a child already going through all of this... well shame on them.
Ok.. off my EEG soap box.
For her sake I DO hope you pick up the phone and just cancel the appointment for the EEG. It is done ALL the time.
If you want.. AFTER cancelling the test.. ask the doctor at your appointment exactly what he wanted to prove.
I would LOVE to hear THAT answer.
Good to hear you are working so hard to do your best to help her.
I'm confused, is she having an EMG or EEG? Tincup is describing an EMG, while an EEG would measure electric activity in the brain and doesn't use needles or anything.
I'm sorry you and your daughter are dealing with these worrisome results, but it does seem that the white matter lesions can go away. In fact, I think that with MS they come and go...I'll double-check.
Lyddie's right. I was thinking the same thing. The EMG I would refuse. The EEG is painless from what I've heard. However, I've heard that unless the patient is having seizures at the time of the EEG, it will most likely show nothing.
I do not speak from experience.
------------------ Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express! oops! Lymetutu
Sorry to hear about this. I know the heartache of being a parent with a child who's sick. It is worse when there's uncertainty.
An EMG and EEG might not be given to prove that there is Lyme but to help eliminate other things. Some findings might even be consistent with Lyme.
I wouldn't refuse these tests and I wouldn't refuse any test. I wouldn't assume it is Lyme even though it might well be. If someone can prove it is something else, then consider that.
If all they say it they don't know what it is but they're sure it isn't Lyme, well, that I wouldn't accept.
Since Lyme's the great imitator, it is important to rule out other things, and be open to that process. Consider alternative diagnoses, don't be married to any one. A diagnosis always is like a hypothesis, a working hypothesis. If new data disproves it that is one thing or if new data proves something else.
The only thing I wouldn't accept is a diagnosis that amounts to a doctor saying "I'm not sure what it is but I know for sure it can't be Lyme" and then giving bogus reasons for that certainty like the test is negative or there's no Lyme in whereever you live. NOTLyme isn't a diagnosis. But there are other things that can cause white matter lesions and I'd be open to the process of ruling them out.
My two cents, I'll send you the bill.
quote:Originally posted by Lymetoo: Lyddie's right. I was thinking the same thing. The EMG I would refuse. The EEG is painless from what I've heard. However, I've heard that unless the patient is having seizures at the time of the EEG, it will most likely show nothing.
I do not speak from experience.
[This message has been edited by Ireallywant2believe (edited 09 July 2005).]
Thank you, everyone, for your thoughtful responses!!
I do think there may have been some confusion between EEG & EMG, so I did a little on-line research. The EEG is not supposed to be painful at all. It is often used to diagnose epilepsy, as well as many other conditions. I think the reason it has been ordered is because she sometimes has episodes of staring off into space, blankly and not responding to our calls; she says she doesn't remember anything about when it happens. Our LLMD said it is a type (she gave a name I can't remember) of seizure.
We are certain she has Lyme. She has had 2 WB's that confirm it and she was hospitalized at the time of her tick bite with high fever & flu symptoms that weren't responding to oral abx. She's also tested positive for Bart twice.
We went to the neuro, just to rule out any other brain involvement, like a tumor or something. She's had an ongoing fever for about 2 and a half years now, headaches, occassional vision disturbances, stiff neck and sometimes morning nausea & vomiting, so we thought it best to be sure there wasn't additional stuff going on with her.
We've also had a SPECT done that our LLMD ordered, but it didn't show any abnormalities - but it was done locally & I'm not sure about it being read properly since most doctors/radiologists here think that Lyme is just not in our area - funny how I have heard of a number of recent diagnoses here lately & my nurse friend has seen numerous bull's eye rashes at the local practice she works for.
Anyway, the demyelation frightened me, knowing that it is the process that happens with MS. Our daughter has been in treatment for 17 months and has been improving recently. She always seems to feel much better in the summer. Her fever is lower, her symptoms all improve and she has more energy. We have had a lot of suggestions that it is in her mind and related to school. I do think it is related to school, but not in that way. Her school has a mold issue and we recently had gene testing that shows her body is unable to rid itself of neurotoxins, such as those produced by molds. She will be going to a new school in the fall, so we will see if it makes a difference.
The EEG is actually only 1 week away. It was originally scheduled a month after the MRI, so it has seemed like a long time. I guess I have already been stewing about these MRI results for longer than I realized. I guess I can hold out another week to get the rest of the report. Will fill you in afterwards.
Lyddie, I have been glad to hear your daughter's edema & headaches are improving. Do you think the diet is largely responsible for that? Hope she continues to make good progress. I think of you often - I guess I feel sort of a connection to you since we both deal with both Lyme & Diabetes in our children and that they are fairly close in age.
Thanks again to everyone for your input. I appreciate you more than you know.
Tinny, I haven't seen much of you lately - glad you are back! Take care.
I have the same thing in my brain. It does get better. Mine improved with IV antibiotics plus high dose orals and hyperbaric oxygen therapy. Did the MRI show one lesion, or multiple lesions? Make sure she takes all the nutritional support supplements for Lyme disease. Sam-e plus N-acetyl carnitine is a good combo for neurological damage. make sure she takes green tea, cordyceps, acidophilus, Optimum Omega fatty acids, lots of fish and plant oils and eats salmon! Also, COQ10, b complex, a good multi-vitamin, and lots of magnesium. make sure you space out the Questran from the antibiotics!! :-) hang in there!
Thanks for yuor input WC. How long were you on IV, Did you have a PICC line? At our last LLMD appointment, we were told that a PICC may be in her not too distant future, but I have heard a lot of horror stories about them and have some reservations.
I would like to rachet up her supplement intake, but we are having some compliance issues already with her current med. regimen-very frustrating! I have to nag her constantly & when I am not here to remind her, she conveniently forgets. I keep finding pills in pants pockets and other locations that make it obvious she is not getting them part of the time. If she has to go on a picc line, hope we can keep maintnenance up on it.
Enough rambling. Thanks again to everyone for your thoughts! Suzy
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I THINK I may have been absent from class the day they taught INITIALS!
EEG, EMG, EKG, and best of all... the EGG.
cluck cluck.. yep.. dats ME!
So sorry! I am sooooooo use to neuro docs trying to pass off those awful tests I was talking about... that I just didn't distinguish the fact it was the OTHER one, THIS time.
But my problem here right now is.. no one.. especially Lyddie... said..
Hey dipstick.. ya SURE blew that one!
I mean HEY.. I at least expected Lymetutu to kick me around the dance floor!
But... You guys were actually VERY nice and cordial about the whole thing. I DON'T deserve it... but thanks!
Now that the brain glich has been noted by no less than the whole world.. I will still leave the explanation up there for those searching for info on the OTHER test.
In the meantime.. NO, the test she will be having is NOT painful. And if done by knowledgable folks who KNOW what they are doing... (NOT the Mayo Clinic for example)... it might provide SOME information. At least it will be a baseline.
So please forgive me for REALLY messing up the initials and running off. I DID so want to protect her from a test that I felt was NOT cool... and in my fury I wasn't reading right.
"As I don't know much about this, I'll leave you in Tincup's hands. Take care!"
HA! Wrong time for that vote of confidence tutu! But thanks anyhow. I know your heart was in it.
And NOW I will spend the day feeling like a BIG dumb toad!
And... after saying to Suz-Q.. "Now.. you didn't ask about this.. but I am sharing it anyway."... I will know better to keep my big mouth shut next time!
You said.. "I would like to rachet up her supplement intake, but we are having some compliance issues already with her current med. regimen-very frustrating! I have to nag her constantly & when I am not here to remind her, she conveniently forgets. I keep finding pills in pants pockets and other locations that make it obvious she is not getting them part of the time."
I was wondering if you might want to do MY laundry too.. as that is where I often find the pills I meant to take.. but forgot.
Sometimes I stick them in my pocket or on the table.. or where ever... for a "minute" while my hands are wet.. or as I am headed out the door... or whatever.
And due to brain involvement, I NOW have a MAJOR, "out of sight- out of mind" thing I live with.. and this problem occurs often.. unfortunately. It is NOT intentional.
So it COULD be she is honestly forgetting and that situation may need to be addressed? And truth is.. it IS embarrasing for folks when this happens and they forget. They DO kick themselves for it.. and they don't mean to forget.. and often they feel "stupid" when they realize later they blew it.... and especially when it is "seen" or noted by others.
(Yep.. here I go again! Giving you info you didn't ask for! HA! That "holding back" thing I was going to do lasted about 2 whole minutes!)
In an effort to try to make sure I took all my stuff.. I would make a milkshake of sorts. I would crush all the supplements that were "crushable" and add them to a blender with milk (whole milk) or soy milk or rice milk... or a combo.
I would also add a serving of soy protien in my shakes.. not necessary but I wasn't eating right during much of the time.. and I felt it helped me.
Since I adore chocolate.. and I KNEW I would either forget to take all the pills I was ordered to take, be UNABLE to take them.. and/or not WANT to bother (sick of it all and difficulity swallowing)... I would allow myself a "squirt" of chocolate syrup every few days to flavor the shakes.
I also made strawberry shakes with a touch of vanilla bean flavoring.. or plain vanilla (rarely).. and even fruit flavors.
You can drop in fresh or frozen or canned:
Pinapple, strawberries, bananas, peaches, etc. for making it taste more "real shake" like.
Instead of ice cream every day... or you can use the low sugar/low carb kind too.. I put in ice cubes and/or the frozen fruits.
I used my favorite artificial sweetener.. and LOTS of it... so I was sure to kill the sweet cravings with the shake... and NOT NOT be tempted for a desert or "treat" later.
When I traveled.. I would stick my blender in the truck sometimes so I could enjoy my rountine and not have to revert back to trying to take a ton of pills every day.
Often hotel bars also have blenders and sometimes they have "shook my shake" for me in the mornings before the bar opened.
Anyhow.. just wanted to share that in case it MIGHT help? She may want to "design" her own favorite shakes by expermenting too.
And it may appeal to her more than having to swallow MORE and MORE pills.
Ok.. I'm gone.
But last note....
GREAT to see you too! I didn't know you missed me. coo coo coo.. that's so sweet!
You said your child is on ketek, ceftin, cholestryramine and supplements. I don't see an antifungal there. Wild condor mentioned the herb cordyceps, I take nystatin.
What testing/treatment has she had for co-infections? You said she tested positive for Bartonella twice. Do you know which test, exactly? How was that treated?
Could you give a history of her Lyme treatment. How old is she?
I just started IM Bicillin shots 2x/week. They really, truly don't hurt very much. Perhaps that would be another option. No PICC line to bother with.
Ok, here's something you wrote (Darn I wish I knew how to make this bold print!)
"she was hospitalized at the time of her tick bite with high fever & flu symptoms that weren't responding to oral abx"
High fever, not responding to abx??? Which abx did they use?? When I had acute Babesia the local duck thought I had malaria and prescribed doxy and the fever /chills vanished. Course I later underwent a Zithro/Mepron Babesia tx.
Ehrlichia can cause fever,too. Was she given amoxicillin instead of doxy because of her age?
Perhaps more insight could be gained by consultation with another LLMD.
I know my brain isn't working up to par and I have no plans for an MRI or SPECT-it would only serve to upset me and would not affect treatment.
Tinny, OF COURSE I missed you - you are often the only comic relief I get during the course of some very long days! Don't worry about the mix up - very easy for anyone. You should see some of the mix ups I've been making lately. I was actually giving my daughter Levaquin twice a day when it should have been once -when our new LLMD pointed this out, my daughter accused me of trying to make her OD.
I think the compliance issues are really rebelliousness. She constantly complains about "taking so many pills" and trying to keep the timing straight on everything. I did like your shake idea - it might make the med idea more palatable - pun intended. We are mixing her magnesium powder with lo-cal cranberry juice & mangosteen. Her cholestryramine is mixed with juice too. She takes her stick mixer, or boat motor as my husband refers to it, on sleepovers. I have to nag about the above drinks as well as the pills. Then she gets mad because I won't stop nagging her. She is almost 14 and in the last few months I feel like an alien has suddenly inhabited her body. Temper tantrums, attitude problems, loss of interest in school - I can't tell what is normal teen stuff and what may be from the lyme. Maybe the docs can shed some light on this subject for me.
Janet, thanks for sharing your thoughts. We discussed Diflucan with her LLMD, but put it off for now. She is just on probiotics for now - she is showing some oral yeast. Her initial tick bite was so long ago, it is hard for me to remember all of the details. She was six at the time of the bite and is now 13. After a day on IV in the hospital, she improved greatly and she went home with a script for doxy for about 3 weeks. She has been tested twice for Babs & I think also for Erlichia - negative. She's done 2 courses of Mepron-in case. The orals she has been on include Zithromax, Biaxin, Minocyclene, Doxy, Levaquin, Flagyl,Plaquenil, Augmetin, Amox., and Septra. I'm not sure which of those is specifically for the Bart, but I do know our LLMD felt like he was targeting it. The doctor we are seeing right now trained with both Dr. B & Dr. J. Her own child has Lyme also. I like her a lot, but she is pretty far away from where we live. Last time we went we stopped in Baltimore on the way - daughter loved the harbor area! I almost lived there years ago. Was stationed there for several months by my company, but my boyfriend, who later became my husband, talked to some higher up in the company & I was transferred back to my hometown.
Well, I see I am rambling again - sorry! Thanks so very much !! Suzy