LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » had my first appt with LLMD

 - UBBFriend: Email this page to someone!    
Author Topic: had my first appt with LLMD
lajamur
LymeNet Contributor
Member # 24593

Icon 1 posted      Profile for lajamur     Send New Private Message       Edit/Delete Post   Reply With Quote 
hello all,

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!! [Razz]

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

--------------------
Symptoms since age 4
IGM positive Western Blot (Bb)
PCR positive Spiro Stat (Anaplasma)
Suspect babs and bart

Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
TxLymie
LymeNet Contributor
Member # 20847

Icon 1 posted      Profile for TxLymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 [Smile]

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.

--------------------
TxLymie
IgG-Negative
IgM - Postive bands 23 and 41

Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori

Posts: 297 | From Houston | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
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.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Welcome!! Glad you got in to see an LLMD!!!

Consider BABESIA when you have night sweats.

Lyme and Coinfections Symptom List
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95970 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lajamur
LymeNet Contributor
Member # 24593

Icon 1 posted      Profile for lajamur     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

--------------------
Symptoms since age 4
IGM positive Western Blot (Bb)
PCR positive Spiro Stat (Anaplasma)
Suspect babs and bart

Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
pab
Frequent Contributor (1K+ posts)
Member # 904

Icon 1 posted      Profile for pab     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

Posts: 2775 | From MN | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
lajamur
LymeNet Contributor
Member # 24593

Icon 1 posted      Profile for lajamur     Send New Private Message       Edit/Delete Post   Reply With Quote 
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!!

--------------------
Symptoms since age 4
IGM positive Western Blot (Bb)
PCR positive Spiro Stat (Anaplasma)
Suspect babs and bart

Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would say there are a LOT of people here with abnormal brain scans .. due to lyme. They lived to tell about it here!! [Wink] (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!! [lol]

You'll survive this and other things too!! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95970 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lajamur
LymeNet Contributor
Member # 24593

Icon 1 posted      Profile for lajamur     Send New Private Message       Edit/Delete Post   Reply With Quote 
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!!

--------------------
Symptoms since age 4
IGM positive Western Blot (Bb)
PCR positive Spiro Stat (Anaplasma)
Suspect babs and bart

Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 13084 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
stork
LymeNet Contributor
Member # 24167

Icon 1 posted      Profile for stork     Send New Private Message       Edit/Delete Post   Reply With Quote 
TF - that is really good to hear. I hope that is the outcome for me too.

-S

--------------------
long road since 2010
abx got me over the hump
diet, detox, and herbs have got me to heal

Posts: 174 | From CT | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
lajamur
LymeNet Contributor
Member # 24593

Icon 1 posted      Profile for lajamur     Send New Private Message       Edit/Delete Post   Reply With Quote 
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...

--------------------
Symptoms since age 4
IGM positive Western Blot (Bb)
PCR positive Spiro Stat (Anaplasma)
Suspect babs and bart

Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
tomcla2175
Member
Member # 24681

Icon 1 posted      Profile for tomcla2175     Send New Private Message       Edit/Delete Post   Reply With Quote 
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
Posts: 19 | From Southeast Florida | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
lajamur
LymeNet Contributor
Member # 24593

Icon 1 posted      Profile for lajamur     Send New Private Message       Edit/Delete Post   Reply With Quote 
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).

--------------------
Symptoms since age 4
IGM positive Western Blot (Bb)
PCR positive Spiro Stat (Anaplasma)
Suspect babs and bart

Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
canefan17
Frequent Contributor (5K+ posts)
Member # 22149

Icon 1 posted      Profile for canefan17     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Why do I need to spend 550 bucks to confirm that.

Treat Lyme!! End of story!

Posts: 5394 | From Houston, Tx | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.