Chronic Lyme & Neurological Symptoms

I have neurological symptoms. Like yours, mine wax and wane throughout the day...with usually evening flares...which really makes it difficult for me to know when I'm herxing.

Initially I had the feeling of a lump in my throat...and food would actually catch in my throat and stay there...I also would choke on my own spit. I saw and ENT and he put a tube with a camera in my nose - down my throat...to look.
He gave me a drink to swallow and then a cookie to swallow...he saw nothing wrong...but i was having a good morning.

It has gotten about 80% better since. I do get a hoarse voice now and then.

What autonomic issues do you have?

Where are you at with getting a diagnosis? Have you been tested...and do you have an appt. scheduled with a LLMD (Sorry,it's been very busy on here lately, so I'm losing track of where everyone is at in their diagnosis, treatment, etc.)

I have had serious and seriously debilitating Neuro symptoms as well. I was completely miserable since I also had seriously debilitating cognitive symptoms too. I had a ton of muscles spams all day long - to the point of leaving bruises on myself (even had a black eye twice!) when my arm would spasm so hard so as to cause massive movements.

I can tell you that it gets A LOT better as you go through treatments! I'm so glad that you are seeing a LLMD tomorrow. I hope that they get you started on treatment right away!

I'm so very sorry that you are feeling so bad right now. You can start getting your diet cleaned up and detoxing any time though - and that alone could make a difference in how you feel!!

I hope that you see a very knowledgeable LLMD that will be able to help you!

Im so sorry you have been experiencing all of that! But I'm glad you will be seeing a LLD soon. I hope he/she will be able to help you get on a treatment that works and you find relief from your symptoms!

Our symptoms are mostly driven by the bacteria or the toxins as they die off. The only one we have much control over is the toxins when we detox, but this can help some even before we start treatments, since the bacteria put off toxins no matter how they are killed/die. The more detox pathways utilized the more effect you have on the symptoms.

How much it helps depends on how well your body detoxes, the bacterial load that you are dealing with and the toxin load that you are dealing with.

We try to move the toxins from the tissues and organs into the blood stream where they can be processed out of the body. As these toxins move into the blood stream in larger numbers, they bring on a herx. This can happen not only when we begin treatments to kill the bacteria, but during some forms of detoxing as well.

So the thing to do is to make sure that you know as much as possible about the detoxing actions of each detox method used. For instance, Epsom salt & peroxide full body soaks move a lot of toxins from the tissues into the blood stream, so each person must start off slowly with these, spending only 7 - 10 minutes in lukewarm soaks until they can determine how their body will respond. I was rarely able to use the full body Epsom salt/peroxide soaks during my treatments without it bringing on a pretty intense herx, so I basically stuck to using it as a foot soak daily. I still use this and other detoxing methods that I learned to this day - just not daily any more.

The only way I know to tell between a herx and a flare is that a herx responds to detoxing faster, because herxing is nothing more than too many toxins in the blood stream and the body can't process them fast enough to lower them without causing symptoms. And timing. If you have started treatment or a supplement, or increased your detoxing (because you can move too many toxins from the tissues into the blood stream) - then you can create a herx.

As for your question about my bout with Lyme in 2014 - it was a reinfection. I know that I had a tick attach, felt the symptoms creeping in, went into denial for about 3 weeks, then had to order the herbs (LOL!) and finally get started treating. I had soooo many people from here with tons of questions, that I had to really wrack my brain to really answer them to the best of my knowledge, but it made it very clear that I had actually been reinfected and did not relapse.

I have had 3 more ticks on me and I had the same reaction - lump under skin about the size of a pea; very, very red and inflamed skin surrounding the bite; and itch so intensely that I have to use a band-aid and tri-abx ointment with numbing agent for a few days or I'll rip open the skin. But with those bites, I was on astragalus and have not had any symptoms return!! I started the astragalus just as soon as I stopped the last Lyme dose! LOL!

First of all, thank you for your kind words. They really do mean a lot to me.

What's the reason for the spinal? For Lyme diagnosis? That's not really that reliable.

" PCR detects Borrelia DNA in the blood of fewer than half of patients in the early acute stage of disease when the erythema migrans rash is present. By the time symptoms of Lyme disease have been present for a month or more, spirochetes can no longer be found in blood. Similarly, PCR testing of cerebral spinal fluid (CSF) specimens is not clinically useful. PCR testing of CSF is positive in only about one third of US patients with early neuroborreliosis, and it is even less sensitive in patients with late neurologic disease. Urine is not a suitable sample for PCR testing at any stage of Lyme disease."

www.medscape.com/viewarticle/764501

So, your actual question to me was about taking Samento and Banderol? They are actually more effective than 400 mgs of Doxy for killing the Lyme bacteria.


So I guess it all comes down to why you are having the spinal tap? If it's for a Lyme test, it's not really recommended and I'd question the need of one based on what I know.

For antibody production though, yes, you most definitely want to be taking something to kill off some of the bacteria to kind of 'jump start' your immune system into producing those antibodies.

Traveler,
You give me hope that I can fix my cognitive issues without pharmaceuticals. And maybe have a somewhat good life again. Thank you for sharing so much with everyone here. I don't know know you do it but your dedication is humbling.