It's been a while...

Hey everyone,

It's been a while since my last post, feeling frustrated and didn't know where else to turn. I've received so much support here in the past I felt inclined to return to vent a bit.

Long story short, I have come a long way since I started treatment 2 years ago. It is hard to say what percentage I feel better because I have suffered a seemingly permanent neuropathy in my legs and feet for which I am in pain management for. I am struggling to deal with the fact that I will never just walk away from this disease. At 32 years old, having severe burning pain and not being able to wear pants or have anything touch my legs.

My main reason for posting is that I can't seem to ever stay symptom free. I have done two years of oral antibiotics, six months of IM Bicillin, six months of herbal (byron white, buhner), and one month of IV Ceftriaxione. Every time I think my symptoms are gone or barely there, they start to get worse again. I just went a good two month period with barely any symptoms at all. I really thought I could stop treating. But, this past week, things started coming back.

I'm going to see my llmd soon and get her take but I've been feeling like she doesn't know what to do with me at this point. So tired of worrying all the time and constantly having my symptoms come back.

Anyway, just wanted to vent. If you read this, thanks for listening :)

All the best,

Joe

I completely understand your frustration and am sorry you're still struggling.

While I can't speak to protocols other than Buhner and Cowden, I can tell you that Buhner advises treating for a year.

And, I'm not sure what you were treating for but, I've become more and more inclined to suggest that people consider herbal protocols that address both Babesia and Bartonella.

I say this because my research shows that people can be dealing with asymptomatic Babesia and/or Bartonella infections which can impede their healing from Lyme if those other infections aren't addressed.

Your story sounds familiar to me because I, too, could not shake the peripheral neuropathy I developed on abx despite almost 6 months on Cowden (and a decent amount of herxing).

I was/am taking increasing numbers of different supplements and now also herbs in the hopes of kissing peripheral neuropathy goodbye.

What has really made a difference for me was my decision to treat for Babesia....even though my LLMD never thought I had it and still doesn't.

However, I herxed with many symptoms that overlap between Lyme and Babesia....and I wasn't healing. What did I have to lose? My LLMD supported my experiment and I'm a little over two months into it and still titrating the doses of the herbs.

I am thrilled to report that I'm finally experiencing improvements....and I want those improvements to eventually bring me to complete relief of symptoms.

I'm tired of wasting time and money on treatment so I'm also herbally treating bart....I figure I'll try to knock them all off at the same time lol

Another thing that comes to mind for your situation is the fact that you didn't mention anything about detoxing. Do you have an established detox protocol?

If you're not detoxing, you really should be.....and if you are detoxing, you might want to consider adding a few things and continue to add things.

Detoxing helps get all those dead bug parts and toxins they create out of the body. If we don't help usher that stuff out, it can be reabsorbed into our tissues and cause problems (symptoms).

The site I'm linking below is in the "New to Lyme" thread but I share it often because it has quite the comprehensive list of detox suggestions:

www.tiredoflyme.com/detox-methods.html

Without a doubt and if you are willing, please share the various protocols you've followed including what you were taking and for how long.

We have a wonderful group of knowledgeable members who will gladly help. Full healing might be closer than you think if you get headed in the right direction.

I've spent a lot of time, 1000's of hours,researching all the available treatments and have heard all the suggestions here.

Post Edited By Moderator (Traveler) : 9/26/2015 2:17:28 PM (GMT-6)

I haven't read all the other suggests, sorry. And I"m so sorry that you are still struggling!!

I would say that you likely have something else going on - like mold or an asymptomatic infection - that is not allowing you to heal. We are beginning to see more and more of these issues with these infections.

I wish you the best of luck in narrowing it all down!! Please do come back any time we can be a source of support for you!!

Joeyphoenix said...

To be honest, I never really felt anything from the herbs. And now, I'm on mainly an herbal protocol and my symptoms are coming back so I feel like I definitely need aggressive antibiotics in order to stay symptom free.

Is it possible you're herxing on the herbals vs. dealing with the return of symptoms?

I'm glad to hear your LLMD is exploring babesia treatment. I keep finding commentary about asymptomatic infections as I continue to research.

New babesia strains are being discovered every few months and that is concerning to me. Therefore, I'm really liking the multi-herb approach in Buhner's new babesia protocol. I also like the fact that I can add other herbs from other protocols to find what works for me.

Buhner includes Artemisinin in his babesia protocol and Dr. B says Artemisia should be part of every babesia protocol (2008 Diagnostic Hints and Treatment Guidelines).

Has your LLMD mentioned anything along these lines?

If anything, I hope you'll do things to support the parts of your body that are affected by these infections. The spleen really takes a beating from babesia....as do our red blood cells.

Babesia are bigger than Lyme bacteria so that's why the herxes can be more intense. I'm glad you have an effective detox protocol going and I hope you maintain or increase it as you move forward with Babesia treatment.

I actually invested in lipsomal glutathione to help with Babesia herxes....the stuff works.

Post Edited (cd3764) : 9/26/2015 5:28:31 PM (GMT-6)