lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Hey folks... Update:
I'm went back to the Neuro who gave me the IVIG last year. I havn'tadn't seen him in a good while as I had switched over to my current LLMD.
He reviewed SPECT scan and says the images from the scan are what he sees with Alzheimers and Dementia.
He said I don't have either, but he has seen this with Lyme patients on many occasions. He says to keep going with the IV Abx and that it's all irreversible.
He says the pattern from my scan accounts for the emotional lability that I have. He says the fact that I can come out of it and laugh and enjoy things is a good sign that the nerves are trying to heal.
He said these changes are not consistent with any true Psychiatric illness and therefor drugs like Antidepressants and mood stabilizer most likely would have no effect on the crying and emotional lability.
Got to respect him as he is the Chief of Neurology at a very prestigious hospital.
Gary
[ 08-10-2010, 04:23 PM: Message edited by: lymetwister ]
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
"He says to keep going with the IV Abx and that it's all irreversible."
Did you mean that it is reversible? I hope so. That is what I have been told. Or does my doctor just say that to make me feel better?
Posts: 40 | From New York | Registered: Mar 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As your neurologist knows about lyme and has seen this in other lyme patients, he's saying that it's no news at all that SPECT scans show signs of Alzheimers and Dementia. It's proof of what we all know already.
Refer to Alan MacDonald's landmark research with untreated borrelia and Alzheimer's.
Relax, though, it can be reversed - if infection is adequately treated - and your liver and kidneys can be supported and not stressed anymore than necessary.
Most patients with chronic neuro-lyme - or other chronic tick-borne (or stealth) infection, have Encephalopathy. It just goes with the territory. Encephalopathy is a result of infection in the brain that causes inflammation.
It's the inflammation & irritation from infection & toxic overload that is categorized as Encephalopathy. While serious, indeed, it's really nothing new as we all know our brains deal with that. The term can be scary but it is also validating and more precise than "brain fog" - which is what most of us call it.
Encephalopathy creates slower brain waves so it's harder to be function at our best. Encephalopathy also causes severe fatigue, problems with concentration & alertness, pain, depression, disorientation, etc. It makes everything harder.
Lyme Encephalopathy is fairly common - as is Hepatic Encephalopathy (from liver stress) that can go along with that.
Treating infection, supporting the liver, etc. are still key. It is usually relieved with adequate treatment but it can take a while. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Here, here, I hope you meant "reversible" Gary....as I share so many of your symptoms. I'm not on IV...yet, however. I am hoping and waiting to see if the IM Bicillin 3xweekly (3 months into it)will help me. Good luck Gary.
TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
So sorry, yes "Reversible" is what I meant to say.
Funny as he told me if he were my treating Dr., he would only be able to give me 30 days of treatment. He is so aware of the need for Long Term Abx though.
He is the Chief of Neurology.. Specializes in Diseases of the Nervous System, is Lyme friendly according to my LLMD. Yet, he doesn't want to get caught up in the politics despite his knowledge of this terrible disease.
Funny how these Dr.'s only come forward and pro-active when they get infected themselves or it happens to their child. Too bad, it doesn't happen to more ID docs. I did say I wouldn't wish this on anyone, but an ID doc. would be my exception just so we could raise awareness.
Just want to point out that some have suggested that the crying is from being toxic and he is saying it is due to the encephalopathy, which would have nothing to do with toxicity. Perhaps both can occur.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Encephalopathy has a great deal to do with toxic overload. I think he's wrong about that. When the liver is damaged, hepatic encephalopathy often occurs - from toxic overload that the damaged liver can't handle.
Toxins from infection create more inflammation, more swelling - and that's encephalopathy.
As mentioned in previous post, other stealth infections also cause brain swelling / encephalopathy and toxic stress.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
PORPHYRIA Thread - along with details about KPU/HPU (Mauve factor) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Nice to have a Neurologist that understands Lyme!
I still think Benzo's and other psych drugs may help. When I was herxing with initial treatment a large part of it was anxiety. Xanax took away at least 30% of a herx - even the flu-like part.
Posts: 1761 | From USA | Registered: May 2006
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree with Keebler that encephalopathy can definetely be caused by toxins. From what I've read, many things can cause it.
My doc says that all people with lyme have swelling in the brain. He says it can take a year or 2 after you kill all the ketes for the swelling to go down........interesting!
I think psych meds are an important part of the treatment for LD. The brain needs to be treated in order to try and reduce the chance of permanent damage to the brain.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
I was diagnosed with toxic encephalopathy. That's the dx from my neuro, but of course another neuro questioned the diagnosis. Apparently I am too young and healthy to have stuff wrong like that. Disbelief!
If I remember right your SPECT demonstrated HPA axis abnormalities. Perhaps they will correct with time and careful use of antibiotics, but HPA axis abnormalities can be triggered by a number of things, and also lead to Alzheimer's/dementia. I am not questioning your encephalopathy. You have that without a doubt in my opinion. But why? Just the infection? As an non-expert, I'm not sure about that.
From what I have read, it seems that HPA axis abnormalities can be helped or corrected by reversing a glutathione-depletion methylation block (I know I am a broken recrod). If your HGH (human growth hormone) is low, insurance should cover it, and that could possibly help repair it.
Finally, I made a post about reversing HPA axis abnormalities by temporarily suppressing cortisol. Of course, I don't know if a doctor would do this as it would be regarded as highly experimental.
Correct me if it wasn't your SPECT that lit up the HPA axis.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
I think this is good news, despite being horrible. I share many of your symptoms, and follow your story with hope and dread (both) much of the time. And you're in a tough situation with your kids.
I always hope that my nerve and CNS damage can be healed over time because the symptoms are not ALWAYS there.
So...I guess the take-away is that you can get well, but you're going to continue to go through hell to get there. Here's to hoping there is some light at the end of the tunnel.
Be well. You're a very, very strong guy.
Posts: 322 | From Venice, CA | Registered: Sep 2008
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
good thoughts only
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Gary--
Thanks so much for sharing; i'm so sorry you are so ill but I'm at least relieved that you're finding some answers to what's going on.....
I know it can take a long time for nerves to heal....did he mention anything to you about trying to use high dose fish oil or Metanx or something to help heal the nerve inflammation???? Maybe you could ask him that....
Hang in there...I just heard about a guy who was very ill with white matter lesions with lyme for 9 years and he is now well.......he thinks it just took the nerves time to heal....for what that's worth....Slow and steady wins the race
Posts: 1155 | From Southeast | Registered: Oct 2005
| 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!
Printer-friendly view of this topic