Brain Symptoms Horrible, Please Help...

Hi everyone,
I am in desperate need of help with the many brain symptoms that come with Lyme Disease, Bartonella (sp?), Babesia, etc... I am completely miserable and don't know what to do to relieve and/or get rid of my symptoms. I am at a very late stage in the whole nightmare of this disease (20 + years, not all bad, the past 7 years the worst). I have been treated with IV Rocephin (sp?), Doxy, Amox, and the list goes on. All of it has taken a toll on my digestive system. I had to go in for an emergency intestinal surgery because my intestine twisted in on itself. I have to go in for another intestinal surgery in 2 weeks because of a foot of dead intestine. I have had my gall bladder removed. I have been in the hospital for pancreatitis, slug blocking my liver duct and so many other things. I have had stages where I have felt well, not wonderful, but well enough to feel real joy. However, when I think that I have things under control, wham, I am hit again.

I have also been on a ridiculous pursuit to have anything other than Lyme Disease and it's co-infections. I have been to the top neurologists at Stanford with every test coming back negative. I do have good new as far as Stanford goes. They are receptive to Lyme Disease. A neurologist told me it never really goes away which was deflating, but he sent me to a autonomic neurologist, Dr. Jaradeh, who is actually treating a Lyme Disease patient from the area I grew up, Paso Robles, California. This autonomic neurologist tested me and told me that my sweat glands are unresponsive, my right eye nerve is fried and that it is not my central nervous system attacking my body, but something attacking my central nervous system. After getting to the peaks of the highest doctors of Stanford and going through a hellish brain damage test, a neuropsychologist told me that I might never get a diagnosis. That is when I realized that I have been searching to have any other disease, but Lyme and it's co-infections that have been so brutal in very aspect of a person's body. I had even hoped to have brain damage. It was ridiculous.

After having a small window of reasonable wellness, I now feel like I have fallen off a cliff. I go through times where I can't walk. I so prefer that to what I am going through now with all of the brain symptoms that make me feel like my brain is a scrambled egg. In this condition, I am a bedridden recluse, feel anxiety ridden, frustrated, guilt-ridden with a headache from hell. I just started doing acupuncture again, which has really helped in the past. I just don't know what else to do to help myself get better. I have been told that there are medications that help with your brain after you have been treated for years with antibiotics. I read that even though all of the little buggers may have been killed, they leave your brain and battle zone a mess. I have tried a couple of medications for that, but none have worked very well or have caused me to have major side effects. I feel at my wits end right now, frustrated and depressed. I am sure there are others who feel just like me or have conquered this. I welcome any of your wise wisdom, advice and just help. I would so appreciate it.

Sorry for going on and on, but it feels so good to get this all out with others that truly understand. Thank you for listening. With so much admiration to all of you dealing with Lyme and it's co-infections, I hope you are all blessed with a path to wellness.

Hi Bruiser and welcome!

Wow, you have really been through soooooo much... My heart goes out to you.  Part of your post reminds me of what Traveler went through with taking antibiotics which gave her a messed up gut.

You still can get better, please don't lose hope!  I have been well for several years and learned a couple of things, one of them being is that when the brain is affected it's not permanent.  Let me explain what happens inside there:

When lyme bacteria die they leave toxins.  One of the worst toxins is ammonia which affects our brains.  The good news is there are natural supplements you can take to bind up all that ammonia so you can purge it out of your body.  What helped me clear out that ammonia was Dr. Jernigan's Neuro-Antitox Formula (I took the CNS/PNS formula).

You may want to read this article below (I am not affiliated with Dr. Jernigan or his botanicals in any aspect):

http://beatinglymedisease.blogspot.com/2009/11/although-many-people-have-heard-of.html

You can also read about the Neuro-Antitox Formula's below:

http://hansacenter.com/product/neuro-antitox-ii-cnspns-tm/

www.hansacenter.com

Ammonia not only affects our brains but our joints, liver, etc.  

Hang in there okay?

Denise

I know, it absolutely sucks!!! I have been to hell and back as well: Breast CA, immune globulin deficiency, complete thyroidectomy, and almost died of c. diff.

All of this mostly alone. And my brain sucks too. I forget the most basic things, get very hyper (especially when I herx, etc. etc.).

I have unintentionally alienated so many people, who think I must be "out of it."

It's so hard not to be depressed when your body keeps failing you over and over again.

I think some of do have brain damage, but from Lyme, and I've been looking into going to a brain damage support group. I figure, why not?

I would love the names of some of your neuros, though I don't know if I can go to Stanford.

Can you email me?

Margaret

Bruiser...hello! I'm glad you posted and I'm sorry you are struggling right now but we have to believe that there are better days ahead. I know when you're down in that hole it's hard to feel positive but never lose faith!
I too have a lot of neuro sx and would rather be wheelchair bound than have "scrambled eggs" for brains like I have on most days. I have joint pain and other symptoms and as a child my physical symptoms were much more debilitating ie arm in sling, neck brace, remember my dad carrying me to the bathroom.
But with the neuro symptoms you lose a sense of who you are and when it goes on for so long it starts to take a toll on you psyche...it's the worst!!
Deejavu...I will hold onto your words and pray on them and try to envision myself as my former self someday...intelligent, articulate, and just someone who generally had their act together.

Bruiser..The other part of your story that i sympathize with of course is what the antibiotics have done to yours GI system...thank God I don't have any experience with that, at least not yet...but it is always in the back of my mind.
As we struggle against this beast of an illness, new issues arise despite our best attempts to keep them at bay. I struggle with how long to take the antibiotics knowing I've had this disease for more than 30 yrs...probiotics only take you so far.
I pray that your upcoming surgery brings you much needed relief to your belly ailments.
Keep in touch and together we will get through it!

I forgot about the ammonia issue. Which supplements are supposed to help with that, and what are you supposed to do?

Bruiser, I know it's awful. You just gotta keep on keeping on.

Margaret

Bruiser...

I identify with your symptoms, as some of my worst were cognitive/neuro.  I was ill for 8 years with neurolyme and coinfections; homebound for the last 5.  I would never have believed that I could get well, or that the "damage" was reversible.

I am well now and have my life back, med-free.  It is possible, and there is hope...

Here's a link to another thread about how I became well with mild hyperbaric:

https://www.healingwell.com/community/default.aspx?f=30&m=2821404

Let me know if you would like more info/details...