white spots in the white matter of my brain

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Amy26
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Date Joined Feb 2016
Total Posts : 35
   Posted 2/4/2016 11:03 PM (GMT -6)   
I was diagnosed with lyme disease December of 2015. In November, an MRI of my brain showed 10 to 12 white spots in the white matter. They were originally looking for MS because I have weakness, pain, and numbness in both legs. I also suffer from dizzyness, memory loss, and difficulty processing information. They ruled out MS but couldnt give me any other explanation. Could this be a symptom of lyme and if so can it be corrected?

Girlie
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Date Joined May 2014
Total Posts : 26428
   Posted 2/4/2016 11:43 PM (GMT -6)   
Yes, it can be caused by Lyme Disease.

I do know that people who have those symptoms DO get better with proper treatment - those are all common symptoms...what I don't know is if they had those white lesions and then had an MRI after and they were gone.

Also, MS is often a misdiagnosed case of Lyme Disease.

I had/have four of the six symptoms you listed plus many more.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

ghost93
Regular Member


Date Joined Jan 2016
Total Posts : 183
   Posted 2/5/2016 12:15 AM (GMT -6)   
Wait a minute...I also had a MRI.Almost the worse thing ive ever been though.Horrible experience lol.that alone is enough to give me ptsd lol.But i seen pictures of my brain as i was leaving on there screen.I had white dots everywere...I called neurologist n he said nothing was abnormal...So white dots are abnormal?!?!?

Girlie
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Date Joined May 2014
Total Posts : 26428
   Posted 2/5/2016 12:24 AM (GMT -6)   
I had an MRI of my brain, too, but never saw the images. I just got the report.

I'm sure the report would have said if I had lesions...
Ghost - maybe white dots aren't the same as lesions? IDK.

I didn't find the mri's to be a bad experience...I've had three now...or is it four.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

ghost93
Regular Member


Date Joined Jan 2016
Total Posts : 183
   Posted 2/5/2016 12:27 AM (GMT -6)   
Oh i cant stand it lol.I was freaking out lol.My doc said would you like a nerve pill for it before you go n i thought nah i feel drugged enough i dont need any help lol.After i thought to myself boy you shoulda asked for 10 lol!
I only seen mine because as i was getting all my jewelry back on (ear rings lip rings) i seen the images on their computer.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 2/5/2016 12:44 AM (GMT -6)   
Lol...I almost fell asleep during one of them...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

ghost93
Regular Member


Date Joined Jan 2016
Total Posts : 183
   Posted 2/5/2016 12:59 AM (GMT -6)   
You are a very tollerant person lol.

bluelyme
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Date Joined Nov 2015
Total Posts : 4388
   Posted 2/5/2016 1:15 AM (GMT -6)   
Was read as multiple punctate flairs in t1 t2 foci.made me dizzier...they said was un remarkable but consistant with early ms or small vessel vasculitis. ..i am hoping the brain can heal or at least repattern...it is what happens when lyme is on the brain. Some say abx cant get all the spirochettes out....mini and iv rociphin maybe can but dead 'cettes can blow neurons too so idk...6 in one hand have dozen crap shoots in the other....alternative guy said this ladies lesion healed after he delt with filarial worms...and ms ers have healed after bvt so idk heres hoping...

gkamom
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Date Joined Apr 2015
Total Posts : 768
   Posted 2/5/2016 6:51 AM (GMT -6)   
I have all those symptoms and many of us do. I also had an MRI, but never saw the images. I was only told I did not have MS. This was at least 10 years ago and more than 20 years after my first symptoms.

Dr H at least has reported patients with MS confirmed by MRI who had complete resolution after treatment.

As far as tolerating it, a friend offered to bring me and wait so I got a shot and was fairly out of i for the whole time.

MS isn't the only thing that shows lesions (or plaques) in the brain. Mr MacDonald's work has also shown that (some, don't know if it is all he tests) patients who die from Alzheimer's test positive for Lyme. Best thing to do is test for Lyme and start treating. Igenex test is best and if you can't find a doc to sign off on the test there is an online lab that will order the test.

Let us know how we can help.
Kim

Amy26
Regular Member


Date Joined Feb 2016
Total Posts : 35
   Posted 2/5/2016 10:35 AM (GMT -6)   
This is what the report said about my brain MRI "Scattered nonspecific foci of T2 signal predominate within the subcortical white matter both cerebral hemispheres. Findings may represent small vessel ischemic changes or sequela of migraine headache. The appearance and distribution of these lesions are atypical for demyelinating disease and this is considered less likely."

I was at the doctor yesterday and asked to see the images. I also asked him how many spots there were because about six years ago when I had an MRI of my brain I had three spots which they thought were from early childhood trauma. Apparently now I have 10 to 12 spots.

My regular doctor does not think this has anything to do with my symptoms and thinks it is a normal sign of aging. But my alternative care doctor said lyme disease can cause these and if it progresses it can turn into MS, ALS, Parkinson's, or Alzheimer's. I get so confused sometimes and don't know who to believe. I wish the medical profession could come together on lyme disease. This illness if stressful enough without them disagreeing about everything.

I guess what I am asking, is there any treatment that can improve or at least stop these white spots from progressing?

On a side note, I too am deathly afraid of MRI's but recently I have had four of them. I am not fond of the medicine that they give for MRI's so I struggle through them. The last few times I have had an MRI they laid a cloth over my eyes and had headphones on with music. This really helped.

Thanks for your help!

PeteZa
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Date Joined Jul 2015
Total Posts : 8941
   Posted 2/5/2016 10:47 AM (GMT -6)   
I have a horrible problem with claustrophobia. I did not do the MRI, it is that bad. I had a CT scan because they thought my head pain was a tumor (all pre-lyme testing).

Test says: white matter low densities seen.

I asked my LLMD about this and he said it is normal for a person my age but could also indicate lyme if I was younger.

Young whippersnapper insinuating I was old!

gkamom
Veteran Member


Date Joined Apr 2015
Total Posts : 768
   Posted 2/5/2016 12:04 PM (GMT -6)   
Amy, sorry we seemed to get caught up in the discussion of MRIs and spots in the brain.

The answer to your question is yes all of those can be symptoms of Lyme including the spots. Yes, everything can get better when you treat the Lyme.

As you read peoples posts, usually, you will see in people's signatures the diagnosis they have been given before. Common ones are Fibromyalgia, ALS, MS and Lupus. There is also a Dr MacDonald who has been studying Alzheimer's and he's found lyme in some of the brains he is studying. Some of the more prominent doctors (those that are so well know the medical boards don't take them on) tell stories

But the important thing is to start treating it. I saw that you put up a post asking for a LLMD in Minnesota and assortment said he sent you some names. Follow up on that. It's important that you detox. That info is in the "New to Lyme?" thread or you can go directly to tiredoflyme.com and she has a long list.

I would also suggest that you read posts and educate yourself. This is the most knowledgeable group around with lots of experienced people who have either gone through this or are going through it. Post questions and people will pop in if they have info for you or if you just need moral support.

Let us know how we can help,
Kim

bluelyme
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Date Joined Nov 2015
Total Posts : 4388
   Posted 2/7/2016 11:37 PM (GMT -6)   
Amy treat soon...it can develop into a myriad of other problems too...do you have llmd ? Did you do enhanced with dye mri?... are you having twtching? Have you been tested for mycoplasma or cpn? See cpnhelp.org is similar regime abx wise but i am doing bvt and rife may add more oxidative iv ...what is your plan?

Post Edited (bluelyme) : 2/7/2016 11:56:37 PM (GMT-7)


Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 2/8/2016 11:31 AM (GMT -6)   
I guess I'd have to ask what you think of my brain function? I had those and had them for many years. I have my brain MRI on a CD and it's just filed away because my doc told me that it's like they see in MS and not to worry about it since I had Lyme. I got a lot worse after that, then I healed, got reinfected and treated Lyme, but still need to treat Bart and Babs - yet I believe my brain function is pretty good, even if I do say so myself!!

I was severely compromised with my brain function. I couldn't figure out how to spell well enough for spell check to even be of help on the computer, I couldn't follow written or oral instructions, couldn't follow patterns, had no working memory and more - yet here I am after healing. I can't say that everyone that got as bad as I did will heal well (I can't see into the future yet!), but I do believe that we have to give our bodies the best chance of healing.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Amy26
Regular Member


Date Joined Feb 2016
Total Posts : 35
   Posted 2/8/2016 11:58 AM (GMT -6)   
Out of all my symptoms, my declining brain function scares me the most. I was diagnosed with lyme disease on December 22, 2015. My alternative care doctor put me on doxycycline along with biocidin, and other supplements to boost my immune system. My symptoms continued to worsen while on treatment so my general practice doctor referred me to an infectious disease doctor. She confirmed the diagnosis but said I should quit all treatment immediately because I was getting worse and they could cause more problems. She said the bacteria has been treated apropriately and that some people just dont get better. I did quit all my medicine and some of my symptoms have improved a great deal. I still have dizzy spells, my memory is terrible, I get tired very easily, my legs are still numb but the weakness has improved, I still have muscle and joint pain, I still get headaches, and I started getting a weird sensation on my face. It feels like something is crawling around on my face. This freaks me out. In the meantime, I was given a name of a llmd in Minnesota. I have an appointment tomorrow so I am hopeful to get some answers. I also had a test done to check for coinfections but I wont get the results for a couple weeks. I cant tell if I am actually getting better or if I should go back on my medicine. Thanks for all the support! My family and friends try to be supportive but it is hard for them to understand what I am going through.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 2/8/2016 4:21 PM (GMT -6)   
The bacteria that started all of this for you is still going strong in your body - that's obvious because you still have those symptoms. It's very rare for an Infectious Disease doctor to know how to treat these infections without having ILADS training. What you needed to do actually is increase what you are doing for detoxing. I was in the same boat because I wasn't detoxing when I used abx the first time around - I ended up at least 10 times worse than before I started treatments. I had to stop everything and detox for a long time to get to where I could stand to be in my own skin again. That's when my healing really started though.

I started detoxing, got my diet in a good place, and really started taking extra good care of me. I rested lots, reduced my stress levels and treated my infections and healed very well.

I'm glad to hear that you will be seeing a LLMD. Be sure to keep checking back here with us to be sure that your doc has you on a good protocol and you are detoxing well among other things.

Healing is very much out there for people - what we don't know is what we may need to do to get our healing, or how long it will take.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Pat Tall
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Date Joined Aug 2012
Total Posts : 948
   Posted 2/8/2016 6:35 PM (GMT -6)   
Hi Traveler. Please educate me regarding ILADS training. If one is a physician (MD) , how extensive is the training they offer. Is it two years or three days or one of the side classes at a conference. I've heard that the charge is not much and class is two days. It would be good for us to know OFFICIALLY what it entails, duration, internship and clarify it for us HW readers. Can you help in this area. Thanks for all you do on the forum.

thatdudefromkansas
Regular Member


Date Joined Sep 2015
Total Posts : 36
   Posted 2/8/2016 6:49 PM (GMT -6)   
Speaking from experience:

I have been diagnosed with MS.
The basis for the diagnosis considers multiple things.
But, in a general sense, the findings must meet certain criteria, called MacDonalds Critera.

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Paper-TipSheet_-2010-Revisions-to-the-McDonald-Criteria-for-the-Diagnosis-of-MS.pdf

Basically, multiple findings over a period of time is usually the way it goes.

The issue with the differential between "MS" and infectious disease is, as many can attest to on here, the tests and methods used to rule things out. (Immunological assays for antibodies--The Western Blot--for example).

MS and other diseases are diseases of exclusion.
Technically speaking, the ONLY time the diagnosis of MS should be made is with the exclusion of any infectious agents that can mimic the disease. (Neurological Borreliosis--Neuro Lyme-- and neurological Syphilis are examples).
Even though, depending on where you reference the signs and symptoms, it is stated that there are SOME differences in diagnostic lab tests, MRI's, etc, I have yet to find any definitive consensus on what those differences are.

The lesions in your brain will look the same, whether it is MS (if it is a truly separate issue from something like Lyme) and Lyme. Vasculitis can be a sign of a neurological borrelia infection.

In my case, one objective sign that pointed my doctors in diagnosing MS (aside from similar symptoms as you) was the presence of Oligoclonal bands in my CSF. However, I can reference numerous studies that show the same protein bands in neurological lyme infection (it is produced when there is inflammation in the Central Nervous System).

It is a very tricky issue.

I am still pursuing my issues.
I was IGG 31/41 and IGM 39/41 Positive on western blot and am currently treating for Lyme, for the past 3 or so months.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4388
   Posted 2/9/2016 12:19 AM (GMT -6)   
Dude great microscopy work...i am still amazed the spirochettes seem unfazed by your mino/tini combo .any resolution of symtoms?.amy doxy can chase it further in you need combo therapy or other means...for a long while... also watch "under our skin " with your fam on hulu ....trav i like your brain.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 2/9/2016 1:51 PM (GMT -6)   
Pat Tall said...
Hi Traveler. Please educate me regarding ILADS training. If one is a physician (MD) , how extensive is the training they offer. Is it two years or three days or one of the side classes at a conference. I've heard that the charge is not much and class is two days. It would be good for us to know OFFICIALLY what it entails, duration, internship and clarify it for us HW readers. Can you help in this area. Thanks for all you do on the forum.


Unfortunately, there is no standard training course. The doctors that go to the ILADS conferences and training get it piece by piece, one weekend/conference at a time. So we have lots of doctors that can legitimately say they have ILADS training, but they may have only had one conference so far to learn from.

Each conference will differ depending on who they have speaking, it could be a broad spectrum look at the disease in general, or some narrow aspect of it (like Neuro Lyme, or seizures in Lyme for example).

Honestly, ILADS isn't very forthcoming with information on how they determine a doctor to be 'ready' to practice, so it's once again left up to the patient to determine if the doctor actually has enough experience in the right areas to be able to help them, and when that doctor has helped them all they can and it's time to move on.

Maybe one day there will be some kind of actual qualification, as in 60 hours of instruction or something, so that the patients can know where their doctor is in their overall training. Also, whatever specialty the doc has (Neuro, GP, Gastro) that knowledge follows them in their Lyme practice as well.

As for the charges, I believe that ILADS even does 'scholarships' or grants to help the doc's pay for at least some of the cost of attending a conference and getting some training.

If anyone has a doc that is interested, please share this site with them: www.ilads.org/education/physician-training.php
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 948
   Posted 2/9/2016 7:19 PM (GMT -6)   
Traveler, thank you for your reply on ILADS education. I wish that a formal program with definitive college guidelines was available,-- like there is for cardiology, gynecology, psychiatry etc. with credit hours (not CEU's), internship (ILADs does arrange this),. Now with the discovery (by Mayo) of a new bacteria that causes LYME and the genome study of the ticks and their life-- we need this education for our physicians NOW , not later. For the patients sake. For all our sakes.

A medical paper came across my net today on the genome tick study and it said "most prolific pathogen-transmitting agent on the planet-- the LYME disease spreading tick that bites humans." That scary to read.

Thanks for listening. I'm angry most of the time and my family members are suffering from this.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 2/9/2016 9:45 PM (GMT -6)   
Agreed, on everything you said. That's why I do my best to get good information out. It's really incredibly important in my eyes.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!
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