My 19 year old son who has been diagnosed with Lyme disease as well as Bartonella, recently had an MRI after his symptoms were getting progressively worse. Most of his symptoms have been neurological with severe weight loss, but I have also seen some personality changes and neuro-psychiatric symptoms.
Since his dad/my husband died of a brain/spinal tumor, I decided it was time to look inside his brain based on what I was seeing and noticing.
The MRI came back abnormal with a single large diffuse lesion in his right frontal brain. I have had two radiology reports based on his MRI so far, and both say that a differential diagnosis would involve looking at a tumefactive demyelinating lesion associated with neuroborreliosis or a low grade tumor (glioma or astrocytoma).
His LLMD wants me to see a whole team of people to rule out other medical diagnoses. We have to see an Infectious Disease doctor to rule out a parasitic or fungal infection in the brain, and a neuro-oncologist to rule out a brain tumor.
He believes my son has Lyme but does not want to start him on aggressive IV therapy until we have ruled out other infectious causes and cancer.
It has been so hard to get an appointment with an Infectious Disease doctor! I am still waiting for one after sending in my sons information to them and its been over a week of waiting in spite of numerous phone calls to them!
I have contacted Sloan Kettering to get a records review with them and am awaiting paper work to get that done.
We have already seen a local neuro-surgeon who was totally useless and would not give us any opinion about the MRI.
We found out the MRI results on the 8th January, and its taking so long to get these other appointments going. In the meantime, my son has had to take a leave of absence from college and it looks like its going to be a while before he can go back.
I am beside myself with worry. All three of us are sick with Lyme and co-infections in our family, and we have been haunted by illness since my husband's brush with terminal cancer. I feel totally overwhelmed with all our ongoing illness, and me being the only one to handle everything.
Has anyone else here had to deal with ruling out a tumor versus neuro-lyme? I would love to know I am not alone in this.
Thanks for listening....
Posted by lyme in Putnam (Member # 11561) on :
I hope it's "just a lesion". Some focus think it's the world, others say it's nothing. I'm sorry you're all sick. One day at a time. Keep posted, God bless.
Posted by Judie (Member # 38323) on :
Gosh, you're a very strong woman. I'm amazed at how much you're handling.
Okay, this may be a long shot, but there use to be a company called Gamma Knife ran by Craig Tagawa that use to lease out equipment for doing laser brain surgery (several years ago the company was in San Francisco and UCSF used one of these devices). I have not kept up with the company over the years, but I know 2 people who benefited from this surgery (one recently).
Perhaps you can find out if there's a facility that you can get to that has one of these devices and a doctor there can better evaluate what's going on with your son.
This was the company but I don't know if they deal with the gamma knife anymore.
It says this in their milestones section, I assume they mean the gamma knife:
"We extend our agreement with Yale-New Haven Hospital in New Haven, CT and will upgrade existing unit to a Perfexion."
Posted by oceangirlSA (Member # 40873) on :
Hi Judie
Thanks, for the reference. I think at least one of our local hospitals use this procedure.
I will look more into it.
Posted by hopingandpraying (Member # 9256) on :
Has your son been evaluated by a LL Neurologist?
Posted by seibertneurolyme (Member # 6416) on :
Brain lesions are fairly common with central nervous system lyme disease. Hubby had 4 or 5 lesions that remained unchanged over a period of at least 10 years.
He had numerous MRI's. Many different interpretations of those same lesions -- everything from normal for his age to migraines (he was NOT having headaches at the time and never ever had a migraine in his life) to ischemia to possible neruoborreliosis.
It all depends on the radiologist reading the scan.
I would request a brain SPECT scan or PET scan before consenting to any surgical procedures. That test is more based on function than structure.
I do know there is at least one person who used to post on this board that did actually have brain surgery for a lesion that turned out not to be cancerous and was later diagnosed with neuroborreliosis. But can't remember the person's name.
Good luck,
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Has your son been tested for bartonella yet? The weight loss in combo with neuropsychiatric symptoms make that coinfection a high prohability in my opinion.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Here is one previous discussion you might want to read. Robin123 is the patient I was thinking of.
Bea Seibert
Posted by tick battler (Member # 21113) on :
Ocean - I sent you a pm.
tickbattler
Posted by oceangirlSA (Member # 40873) on :
Hopingandpraying, my son has not seen a LL neurologist yet, but I do have the name of one who is supposed to be good but is out of state. He is on our list of consults.
Bea, my son has been tested for Bartonella, and he has never tested positive through Igenex or Quest, but he does have a clinical diagnosis.
Posted by map1131 (Member # 2022) on :
oceangirlSA, I too have been bartonella tested many times, thru Igenex, Lab Corp, Quest and they have always been negative.
There is no doubt in my mind I have a bartonella strain. I just don't know which one.
So a clinical dx with treatment is good. Bart is as hard to kill off as the mighty Lyme bacteria, if not harder. Just from my experience.
I wish you and your son the best in doctors and treatment. You are doing a great job mom.
Pam
Posted by 2roads (Member # 4409) on :
Hi Ocean-
I can't make any recommendations in this area, but I am preying for you guys. I know how it feels to worry over your children.
My daughter had an MRI done a couple months ago, and she has two areas that lit up. She said she was feeling depressed with depersonalization.
I still don't know what it is. She has a TBI history with treatment under Doc J.
I'm not sure how they can assess fungal and parasitic causes short of a biopsy, but maybe I am wrong.
Just know that you're not alone, and in our thoughts and prayers.
I guess just don't make hasty, uninformed decisions, I have learned the hard way.
Hugs,
2roads
Posted by oceangirlSA (Member # 40873) on :
Hi 2roads and Map1131
Thanks so much for your well wishes - I appreciate it!
I heard from my dentist today that two of his patients - young college students - also have lesions on their brains. I find this alarming! How many young people have TBI and don't know it?
My younger son has had repeated tick bites since he was 5. I think I am going to get an MRI of his brain too now.
Posted by 2roads (Member # 4409) on :
Heck, let's all get one. My son has something on his as well.
Go figure-
Posted by 2roads (Member # 4409) on :
Heck, let's all get one. My son has something on his as well.
Go figure-
Posted by tick battler (Member # 21113) on :
My guess would be parasitic for much of these lesions. Just a guess but I know that our population is infested with parasites right now...hence the HUGE rise in autism.
Parasites are also a major cause of depression and mental health issues. I have seen it in my family after our well water became contaminated with parasites.
Posted by oceangirlSA (Member # 40873) on :
Tick battler
How did you find out that your well water had parasites? I have asked my well company about testing and they only test for chemicals and bacteria, not parasites. How would I find a test for this?
Posted by map1131 (Member # 2022) on :
I personally don't want to know what's on my brain if anything. I just can't make myself go there.
Pam
Posted by Chipster (Member # 43143) on :
Might consider having the MRI repeated at Mass Eye and Ear. They have incredibly great protocols for brain lesions because they scan all of the patients with brain tumors from the Mass General proton therapy center, which is right next door.
The neuro radiologists at MEEI are some of the best in the world at reading brain MRIs. Mass General is a top neurosurgery program as is Duke and Hopkins.
It is possible nobody can tell what is in the MRI because of the protocol used. MEEI has their own protocols and top radiologists reading the film and they are close to Connecticut.
Anyway, that is what I would do but I am not a radiologist and I don't practice medicine.
Posted by oceangirlSA (Member # 40873) on :
Hi Chipster
Thanks so much for your feedback. I will look into Mass Eye and Ear and go look at their website.
Posted by Chipster (Member # 43143) on :
Good luck and let me know what happens.
Posted by tick battler (Member # 21113) on :
oceangirl, you are right, mainstream testing does not normally test for parasites. We first suspected when we all become sick with giardia and our babysitter drank our water (even though we had bottled drinking water) and got very sick. I would feel worse after a shower and my eyes would burn. We took water sample to our electrodermal screening practitioner and she was able to test it for parasites, bacteria and viruses. It was loaded with all. We also brought a sample from the kids' school, which only showed some chlorine since it was city water.