just reporting back after my first appointment with an LLMD.
it went "well" i guess you could say, though i don't even really know what "well" means in this context!!
the doctor thinks i have a major intestinal dysbiosis, mercury toxicity, probable lyme (possibly in brain) and probable bart.
i had a bunch of blood drawn today including the first part of the igenex tests. i'm going to do the second half next month so i don't have to pay for it all at once.
he also wants me to get a brain MRI which SCARES ME!!! any moral support in this realm would be greatly appreciated. i would love to hear from others who have had brain MRI's/lyme in the brain.
he wants me to start on a really rigid diet/lifestyle overhaul. i've already given up gluten but he wants me off dairy/casein as well, and no seafood whatsoever.
he is having me start on interfase plus enzyme supps.
he thinks my history of night sweats and weird neurological and psych symptoms are indicative of lyme and he suspects bart too because of the sweating.
anyway that's where things stand at the moment.. i'm probably forgetting some stuff -- i feel very drained from the appointment. a combination of excited and hopeful and discouraged and scared.
thanks all for reading.
- lj
Posted by TxLymie (Member # 20847) on :
I had a brain MRI about 12 years ago when MRI's were not as advanced as they are today. It is really no big deal other than the noise might bother you a bit and if you are claustrophobic it might feel weird but it's really not that bad.
If you go to a place that has a newer model MRI (1.5T or 3.0T) the scan will go quicker and you will get better image results. Also ask before you go if you can take an iPod or if they have a stereo system. Many places allow you to bring a CD or ipod you can plug into their system.
If the center recommended to you doesn't have an updated MRI then ask to be referred to another. You DO have a choice in where you go for the MRI...I'm in the business so trust me on that
I have my first LLMD appt next week. I'm having to travel 6 hours to get there but I think it will be worth it. I've only seen a lyme friendly doc so far.
Posted by Keebler (Member # 12673) on :
- As TxLymie says, the MRI should be no big deal. However, WEAR EAR PLUGS and be sure they keep their seal at all times. It will be very loud and you will need to protect your ears.
Oh, "a really rigid diet" can actually be full of variety and lots of flavor. Lots of vegetables, all the colors you can think of . . . some wonderful whole gluten-free grains like Quinoa ("keen-wa"), etc.
You will probably enjoy a better quality of food and see this as freeing, actually.
good luck with your journey. -
Posted by Lymetoo (Member # 743) on :
thanks all, and thanks for the MRI advice.. i will definitely bring earplugs and am hoping to find a 30 minute mri instead of a 90 min one. going to check out cedars sinai in LA.
i think the thing that scares me the most is not so much the actual procedure as the fear that they are going to find something really weird looking in my brain!
it's funny, i know that everyone says to suspect babesia with night sweats... is there a reason why he would have mentioned bart instead? i know he wants to test for all co-infections.. but i was expecting him to say babesia, not bart, based on what i've read.
in any case i am very thankful for lymenet!! everyone has been so very helpful.
Posted by pab (Member # 904) on :
I had a cervical spine MRI last week. I had a brain MRI last year. The procedure is the same for both.
I was in a closed MRI. You have to lay still on a hard surface. They put ear plugs in my ears. This center did not have any way to listen to music. I've been to a different center that had satellite radio.
MRI's are very loud and make a lot of different sounds. I kind of zone out while I'm in there.
The MRI is done is segments for different amounts of time. You do give you a call button to use.
I wasn't nervous at all. Some people need sedation during the procedure.
Posted by lajamur (Member # 24593) on :
wow, peggy, you are really fortunate that things like this don't make you feel anxious!
has anyone ever had something show up on an mri?
i'm concerned that if i get anything other than a completely clean/clear result i'm going to be really freaked out.
something about the thought of having brain abnormalities is just really scary to me.
if anyone here has actually had something strange show up on a brain scan and lived to tell the tale i would LOVE to hear about it.
i don't mean to be dramatic... this is just a really scary realm for me!!
Posted by Lymetoo (Member # 743) on :
I would say there are a LOT of people here with abnormal brain scans .. due to lyme. They lived to tell about it here!! (seriously)
I haven't had one on my brain. (would probably not be normal!!)
The MRI's really don't bother me at all. Not that noisy to me overall. The last one I had was louder than others I've had.... so didn't know if maybe I had become more sensitive to noise in my old age!!
You'll survive this and other things too!! Posted by lajamur (Member # 24593) on :
hi lymetoo,
that was a really comforting reply -- thank you!!
i don't want sedation so i'm just going to try to get over it and do it.
do you know how long they usually take? i have read 30-90 minutes... but to me there is a HUGE HUGE HUGE difference between 30 and 90!!
Posted by TF (Member # 14183) on :
I had a brain scan right after I got my positive blood test for lyme disease. It was ordered by a neurologist, not a lyme doctor.
It showed 2 UBOs (unidentified bright objects). The report said, "Lyme disease cannot be ruled out."
I was glad of this result. I felt vindicated. This was proof that there WAS something wrong with my brain. (Still, the neurologist dismissed me and said I didn't have lyme in my brain!)
I got rid of lyme, babs and bart about 5 years ago. I am symptom-free, enjoying my life.
About 2 years after I completed my treatment, I had to have some sort of brain scan looking to see if I had a sinus infection. The scan was normal.
So, what that shows you is that the brain scan can return to normal once you are treated for these diseases.
All your brain symptoms and problems go away and so do the abnormal results. They are caused by such things as lyme affecting the circulation in your brain.
So, hopefully now that you know that the abnormal results are not permanent, they just show the current condition of your brain, you won't care how bad your brain scan is right now.
Posted by Robin123 (Member # 9197) on :
Glad you got to see an LLMD - congrats!
Hm on the MRI - I actually had a high prolactin hormone count and they MRI'ed my brain and said I had a pituitary tumor, so I had surgery, but they found no tumor, just hyperplasia,
meaning my pit was doing something the doctor didn't understand, so he declared me a medical mystery.
So hmm on the MRI - what can it really find out for us Lymies? That's a medical question I'm asking here.
Now, I understand a SPECT scan can show something useful for Lyme patients, namely, quality of bloodflow in the brain. Before treatment, that's low; after treatment, it increases to close to normal.
Posted by stork (Member # 24167) on :
TF - that is really good to hear. I hope that is the outcome for me too.
-S
Posted by lajamur (Member # 24593) on :
TF, wow, that really IS great!! I am so glad you have made such a wonderful recovery.
Robin -- I'm so sorry that you had unnecessary surgery! But glad it wasn't a pituitary tumor (though I hear those are somewhat common?)...
That is a great question re: what MRI can show for Lyme patients...
Posted by tomcla2175 (Member # 24681) on :
If you are of menopausal age how do you know the difference with the night sweats...just asking because this is just one of the symptoms my sister has had but, we all attributed it to her going through menopause..thanks
Posted by lajamur (Member # 24593) on :
Hi tomcla,
I don't know the answer to this... I am 26 (about to turn 27) and I was told that because of my age the night sweats are suspicious.
The doctor said that the fact that I still cycle regularly indicates to him that there is more going on than just hormones (probable infection).
Posted by canefan17 (Member # 22149) on :
What TF said is why I didn't spend 550 bucks to get it done.
I knew there were problems with my brain from Lyme lol
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