2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Okay my lyme family. My year is starting out just about how I would expect it to.....like *(&(*&*(&)(*.
If we all put our neurological hats on, maybe we can disect the possibilities.
My 18 year old has headaches daily, sometimes diziness, sometimes nausea. No bright lights that I'm aware of. Also has the dissacition thing, but it's not dissacciation it's called something else. It's where she feels like she's outside herself looking in at the world.
recent blood through Doc J showed high IgG titer Bart and positive for all three strep titers. He feels she definitely has PANDAS. Could have Bart cause either IgG or IgM signal a red flag unlike Lyme.
So, now comes the MRI. It siad "Two very small (4mm) (1mm) hyperintense foci in the right posterior thalamus. Neither show enhancement. Could be sequelae for chronic headaches. Dr. J thinks so.
It also states it could be a condition leading to chronic microangiopathy, such as certain connective tissue disorders, hypercoagulatable states, demyelinating disease.
Suggests repeat MRI 6 moths to a year. Doc J suggests a neurologist, not necessarily LLMD neuro. He has her on meds for PANDAS and Bart.
What could this be guys? How can she live with the headaches? Any thoughts on helping her safely? I thought about the fish oil, but just my luck I'd release a clot. I am in awe of this.
Any comments, thoughts, suggestions, prayers, experiences appreciated. I've read location is an important factor. The deeper in the brain, the worse it means, like MS.
thanks,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
2roads, I'm sorry I can't help with the MRI - sending prayers -
PANDAS/PANS does affect the basal ganglia part of the brain- Infection triggered antibody response in the brain. Sometimes high dose IVIG is used for treatment with success.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
At the risk of sounding like a broken record, Has she received any treatment for parasites? Brain lesions can be indicative of a parasitic infection.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
DD had constant headaches and out side body feelings. She treated with Rifampin and the constant headaches went away.
Goodluck with your daughter, I hope she finds relief.
Hugs to you too Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Is it dissociation? Anxiety, migraine aura, lots of things can cause that.
I would get her to a neurologist and let them figure it out. It could be anything.
posted
I have many of the same issues. I had SEVERE headaches EVERY SINGLE DAY for over a year before starting lyme treatment (Cowden Protocol) a little over 4 months ago. I have had multiple MRI with 'hyperintense white matter brain lesions' over a 10 year period, including 2 MRIs in 2012.
Here's my opinion. I think the disassociation, headaches, stiff necks are cause by swelling of the brain and lyme meningitis. Of course, the long term solution is to cure the lyme and co infections, which in my case is being done with the Cowden Protocol. I'm currently down from a SEVERE headache every day to about 10-12 headaches a month - which is a HUGE IMPROVEMENT.
In the short term, I'm preventing a lot of headaches and stopping the ones that do start by taking Topiramate at night and then Imitrex as soon as a headache starts. I'm also taking Ginger capsules twice a day for the nausea.
Posts: 177 | From Ohio | Registered: Aug 2012
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
These symptoms sound very much like bart. With the high bart titers, why not treat that? When one of my boys was being treated by Dr. J many years ago, he had a headache that lasted 8 months until I finally got Dr. J to give him rifampin. It went away within 2 weeks on rifampin. However that did not fully get rid of his bart. We finally got rid of it when we moved on and switched to an herbal protocol.
The derealization can also be a symptom of bart. Not to sound like a broken record, but why not try another path rather than abx?? Why not try Samento and Cumanda to hit the lyme and bart? This is a mini version of the Cowden protocol (which you see Patriot is having success with) but is simpler and was very effective for us.
Dr. J helped us a lot but could only take us so far....
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
posted
Re the dissociative experience, mine ended when I started on Armour thyroid. My T3 tested low.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Pretty sure that as a general rule brain lesions such as seen os this MRI indicate inflammation or scar tissue. Do not think it indicates a clot. An actual parasite in the brain would be very rare -- one that would show on an MRI would have to be something large like toxoplamosis which supposedly has a distinctive pattern on an MRI. Babesia are too small to show on an MRI.
You need to treat the infection -- whatever that might be -- and also I would take symptom meds for the headaches. Also would probably do something to increase blood flow to the brain -- lumbrokinase or something similar. Plus I would add antioxidants such as CoQ10 and pycnogenol (pine bark extract) which cross the blood brain barrier and can help with inflammation.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
As far as the imitrex goes -- hubby tried that for babesia headaches and it make him vomit. Did help with the headaches slightly but not worth the side effects when he was already taking phenergan for nausea.
Just be careful of any meds that get into the brain -- tickborne patients frequently have adverse reactions to things that work for other people.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Did Dr. J suggest IVIG treatment since he said your daughter has PANDAS?
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Under brain lesions and infectuous agents listed; viruses, bacteria, fungi and parasites. One particular infection called cysticercosis is a systemic parasitic infection caused by the pork tapeworm that can show up as lesions in the brain.
Hulda clark mentions this infection on her website and says we all have it. Parasites as brain lesions cannot be discounted that easily especially with lyme disease.
Abx don't seem to be working for many with this illness, so it seems reasonable that incorporating antiparasitics long term certainly would be worth a shot. They seem to be making a difference for many here.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Several people have suggested things that would reduce inflammation. I agree with that, as the inflammation caused by a chronic infection like Lyme will cause slight swelling of the capillaries, which reduces bloodflow to the brain.
I had severe headaches every day. When I began taking Wobenzym, a systemic enzyme that reduces fibrin and inflammation, the headaches began to decrease.
By the time I ramped up to ten tablets daily, in one dose on an empty stomach, they improved dramatically. It was such a relief not to wake up every day with a splitting headache.
Things that will reduce inflammation and pain include Magnesium, Systemic enzymes, like Wobenzym, Boluke, Serrapeptase,
Fish oil with very high EPA, such as OmegaBrite, Minami MorEPA, Source Naturals Arctic Pure EPA, Country Life Omega 3 Mood.
Those "bright spots" on the MRI indicate scarring from small clots or small bleeds. Hypercoagulation can cause this, and is associated with migraines.
My "unidentified bright spots" changed over the years, as they absorbed and disappeared, and new ones appeared. I have migraines, so I wasn't surprised by this.
Taking systemic enzymes or fish oil to reduce hypercoagulation and inflammation will not cause a clot to dislodge, but will hack away at it, dissolving it.
Consider starting systemic enzymes or fish oil with very high EPA...take 2000 mg of EPA daily. Start small, of course, one thing at a time. If it's going to help reduce the headaches, you'll notice as soon as the dose is getting high enough.
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by glm1111: Under brain lesions and infectuous agents listed; viruses, bacteria, fungi and parasites. One particular infection called cysticercosis is a systemic parasitic infection caused by the pork tapeworm that can show up as lesions in the brain.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
P. S.
Forgot to add, i was also having severe migraines daily along with vomiting, and diarrhea and was receiving IV magnesium at a headache center along with phenegergan suppossitories.
Did not stop the headaches and eventually my head went completely numb. Six mos of IV rocephin and 2 yrs of IVIG did not alleviate these symptoms.
The only thing that worked was antiparasitics and salt/c and getting rid of tons of parasites. I had a massive parasitic infection.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
At the risk of sounding like a broken record, Has she received any treatment for parasites? Brain lesions can be indicative of a parasitic infection. ![[Smile]](smile.gif)
![[toilet]](graemlins/toilet.gif)
![[puke]](graemlins/puke.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic