Is this a time sensituve disease

I know obviously everything is to an extent but is this the kind of thing where after a certain amount of time you're looking at a very slim chance of any recovery? I can't help but think of this these days considering i just passed year 7 with no improvements. This must hurt my chances, right?

My SPECT shows 9 lobes of hypoperfusion. It's pretty bad

Aerose91 said...
I know obviously everything is to an extent but is this the kind of thing where after a certain amount of time you're looking at a very slim chance of any recovery? I can't help but think of this these days considering i just passed year 7 with no improvements. This must hurt my chances, right?

We've had a few posts on just what is recovery? - it has different meaning to different people.

In a nut shell, any illness that can damage the body creates more lingering, sometimes permanent, changes. Some "chronic lymies" no longer have active high levels of pathogens, but are merely dealing with the changes it made.

I am "cured" by some peoples definition, but not my own. My definition of healed or cured means back to pre-illness condition, no autoimmune, healthy (by lab measurement) immune system... no nothing that happened from lyme still going wrong.

That said, you can learn a lot about dealing with whatever conditions are left over, no choice really. That's why I'm going back to 100% healthy eating for my body with some food testing to back it...no more guessing, not this diet or that diet ect. I tested with 170 common individual North American foods and spices, and additives to help this along.

Notime4lyme said...
Maybe the hypoperfusion is causing some of your de-realization symptoms-not that it's permanent though. Everything a brain scan shows up isn't always permanent.

As long as you are treating if you feel sick, I don't think Lyme is very time sensitive. I'm approaching year ten of being sick, and I've been feeling better than I have in years. Things can turn around. I've really only been treating for three or four years.

Opinions aside, unfortunately some of us are proof that treating lyme is time sensitive.

Even if its no longer lyme, it can and does cause other things (damage) in some people, which may or may not be repairable- time will tell. This is the truth that some do not want to hear.

This is part of the reason they used to call lyme an autoimmune disease.

**Yes, I feel way better** - but other things are still brewing, like a train coasting down an endless hill. Lyme's "felt" symptoms itself are not necessarily the worse part of this.

There were some others here to, who have not been seen here for quite some time now.

I've never heard of this author before, but found this hopeful article.

/thenaturopathicmama.com/lyme-brain-damage-temporary-permanent/

I totally understand the fear. It's a legitimate one. However, even though you've had the symptoms a long time, you haven't exhausted all treatment avenues.

Binding toxins seems pretty important, especially for anyone with any mold history. Cholestyramine and Jernigan's Neuro Antitox II CNS/PNS formula for ammonia removal are two that I think would be most beneficial to anyone with severe neurotoxicity.

There are 2 herbs Buhner says can heal nerve damage, but they must be taken long term. They are Lion's Mane (Beneficial Botanicals) and Chinese Senega Root (Elk Mountain Herbs).

You've been treating under Dr. M. for only a few months now, right? It may take more time for you to see changes. Don't give up. Hopefully you are communicating to him all of your symptoms and any changes you notice for better or worse as you go along. I believe you are going to get better.

At some point, you can address CIRS with a certified practitioner. I suspect Dr. Mary Ackerley would be a good fit for your situation.

There's also Hansa Center or Dr. Jernigan's books and DIY protocol. From what I've heard about Hansa, they have a very holistic approach and could likely identify other underlying issues that may be blocking your recovery using bioresonance. There may be other bioresonance practitioners who are cheaper and still very effective who could open some doors for you. Since you're mobile and travel around, you could ask for references to find someone really good.

One more thing. You've mentioned that Dr. M told you that permanent damage is a possibility. Did you talk to him about your concerns, especially about this particular question - time sensitivity? Did he offer any suggestions on reversing the brain damage beyond just taking abx? Obviously if there's something more you could or should be doing, even while treating with abx, then time would be of the essence.

Post Edited (WalkingbyFaith) : 8/18/2018 4:50:37 PM (GMT-6)

sebreg said...
I do think if you keep having trouble one of these days it'd be good if you could find a way to try cholestyramine to see if it helps at all.

WalkingbyFaith, funny you mention Dr Ackerley. I thought the name sounded familiar, she is based in Tucson (I'm in Phoenix). i met one of her patients, she had the highest praise for Dr Ackerley.

If I were near there, I would definitely try to see her.

It certainly is time sensitive in how it affects treatment length and response, but no one is beyond saving and you can wipe the bugs out with long enough a treatment I believe.

The lingering damage is a different story though, especially in the brain. The damage can certainly be serious but the body does have its own in-built regenerative mechanisms that evolution has worked in through responses to environmental changes. Its just we don't seem to know much about them yet nor do stumble into circumstances where they'd even look like switching on... fasting comes to mind. There is good animal data showing multi organ system catabolism (30-40% organ size shrinkage) followed by regeneration after 3+ day fasts in mice. Same effects observed on the immune system. The equivalent in humans would be 5+ days I believe, obviously a gnarly undertaking that requires a decent degree of resilience.

These effects also do seem to be relevant in the brain as well, not the catabolism but repair of damaged neurons, coupled with elevated levels of Brain Derived Neurotrophic Factor. BDNF promotes neuronal growth and repair and is actually why Buhner recommends Lion's Mane I believe. It's been shown to elevate it.

Chronic keto has similar but less pronounced effects. Still better than a standard diet.

Anyway, could be something to look into. I'm not in the remission phase myself yet, still trying to address stubborn babesia but will certainly be incorporating long fasts and Lion's Mane into my recovery protocol as a means of completely getting old me back.