What are "neurological" symptoms?

I think I've been a little confused as to what symptoms are considered "neurological" with Lyme & co.'s.

Would you guys mind sharing examples of neuro symptoms so I can have a better understanding? I've also been hearing that when one has a large amount of neuro symptoms to suspect Bart?

Thank you! :)

Thanks rowingmom! I'll check it out.

Here is a list of Nero Lyme symptoms - which can be found in our "New to Lyme?" thread. I've had every one of these symptoms - and more of course! :
Abnormal CAT, MRI and/or SPECT scans

Alcohol intolerance

Aseptic meningitis

"Brainfog"; inability to think clearly

Difficulty moving tongue to speak

Diminished or absent reflexes

Fainting or blackouts; feeling like you might faint

Headaches (frequent, severe, recurring)

Hearing fluctuations (sounds fade then return)

Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)

Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)

Libido (decreased)

Light-headedness, feeling spaced-out

Migraine headaches

Muscle twitching

Noise intolerance

Paralysis or severe weakness of limb

Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities

Photosensitivity

Radiculitis

Seizures; seizure-like episodes

Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)

Severe muscle weakness

Syncope (fainting)

Tinnitus (ringing/noises in one or both ears)

Touch or weight of clothing on or against body causes discomfort or pain

Tremors, trembling

Without detoxing, these would be horrid symptoms for me.

Lovely, are they? I'm sorry that you have so many, although it's typical of Neuro Lyme patients.

Are you detoxing a lot daily? It should help to bring down the severity and possible the amount of symptoms that you have to deal with.

I sort of "fell" into my Lyme Dx. Yes, I had the nymph deer tick bite but, after 3 wks. of doxy, I didn't really have any symptoms....except for what I call my "weird toe issue" (I'm imagining it's numb although I have sensation in it. Bottom line, it's neurological)

Anyhow, I consulted with a LLMD and got a clinical Dx because he observed Bells Palsy in me that neither I nor my family noticed. It only became apparent when I repeated the cheek-puffing in my home mirror as my LLMD had me do in his office.

The Igenex Lyme tests he ordered came back Igenex/CDC positive for IgM.

After reading on here about the symptoms spreadsheet a member created, I decided to "convert" my daily symptoms journal into spreadsheet form.....I basically have a list of any symptom I've experienced and then rate it on any day it might occur - ranging from 1 (mild) to 5 (severe). I plan on maintaining these on a monthly basis and will list my meds/doses as they apply to each month.

My LLMD REALLY liked the spreadsheet and accepted the copy I made for him. He asked me to continue sharing copies with him.

Keeping these types of records are what helped me achieve freedom from thyroid symptoms (I obviously have thyroid disease also :).

If an insurance company ever tried to set a standard of care, there's a chance my care would be compromised because of the types of thyroid levels I need to stay free from thyroid symptoms. Educated doctors don't have a problem with my types of levels. However, insurance companies often use guidelines and, for thyroid, they are outdated and leave patients suffering.

I think that insurance companies would have a hard time fighting documented evidence (in the form of the symptoms records)....and especially when the new ILADS guidelines use the buzzwords they want to hear.

ALA - Alpha lipoic acid - has done a great deal to reduce my nerve issues, as well as high dose magnesium.

Dr. Horowitx recommends it in his list of supplements.

I too used to get those vibrations so bad that sleeping or sitting still was out of the question! I believe those are from Neuro issues, so detoxing with things aimed at detoxing the nervous system should ease that some.

I hope that you are able to relax and still enjoy the vacation!!

Trav- I just ordered ALA. I read about it somewhere on this board. I hope it helps.

Girlie- I too had vibrations all over my body sometimes they would be a small vibration just in my calf other times it would be a vibration from head to toe. when I walk sometimes it feels like I'm stepping on shards of glass. There are so many little things that are wrong with my nerves just too many to list and sometimes you just forget about untilil it happens again.last October when I startedthe Rocephin I was at my wits end and mentally in a very bad place I had tinnitus in one ear but only for one day my hearing was on overdrive and my sense of smell out of control. So far with this relapse its only between Qing and the skin sensitivity.I have been on so many antibiotics I can't believe that the line still exist but apparently it does. I am going on vacation out of the country next week unfortunately it was planned when I was feeling much better. my wife and kids are so looking forward to it but unfortunately I am NOT. Thankfully my doctor ordering another round of Rocephin hopefully for 6 weeks this time not for and if my insurance doesn't pay for it and there's a good chance they will because the doctor I go to is very highly regarded in the regular medical community. And if they don't pay for it then he has agreed to write the script to infuserve where the rocephin is very reasonably priced. I have contacted nurse to care of my Iv last timeand hopefully he will be able to take care of me on the side this time. This disease just sucksthe big one

Mine are just twitching, like something keeps twitching my head and tightening my neck. It's not very fun.

Medical Marijuana is very helpful for many of the symptoms of Lyme, and some have even claimed healing from it. I say that if it's legal where you are, why not take full advantage of it? Prescriptions are legal for whatever you can get them for, why not use herbs too?

Now the alcohol I would be very, very cautious with, even if your symptoms are very intense, alcohol could make them very intense for some!! You *may* find that in very small amounts, you won't suffer too much, but it's definitely not recommended. So maybe pick one special night to be with the wife, have a small drink (find one without a lot of sugar) and make sure nothing too active is planned for the next day in case you react badly.

Runnergirl, have you started using magnesium yet? Many have found at least some relief of those symptoms by just using magnesium. We all need a different amount, so start with 500 mgs once a day and increase every 3rd day until your bowel become loose - then back down one or two doses to where your bowels are no longer loose and you have found the perfect dose for your body.

Detoxing also will likely help a great deal with those symptoms. We have a great list of detoxing suggestions in the "New to Lyme?" thread.

Happyjo - thank you! you're too sweet! I'm just glad I can be of help!! Not only do I remember my own journey the first time around, but I'm "back in the ranks" now with my reinfection. At least it's with a really great group of people!!!

I'm so sorry for not answering sooner, there was a glitch with the servers and I - and many others - couldn't post yesterday!! But I'm baaaaack!!! LOL!

Considering I'm not a doctor, nor have I had any medical training and this is based on my opinion and what I have watched others go through during the last 7 yrs that I have been on here, here's some questions and my opinion:

Did you take any other meds with the Ammox? Dr. Burrascano tells us that Amox needs to be taken with Probenecid. Burrascano states,

"As would be expected in managing an infection with a gram negative organism such as Bb, amoxicillin has been shown to be more effective than oral penicillin V. With cell wall agents such
as the penicillin s, kill kinetics indicate that sustained bactericidal levels are needed for 72 hours to be effective.
Thus the goal is to try to achieve sustained blood and tissue levels.
However, since blood levels are extremely variable among patients, peak and trough levels should be measured.
Because of its short half-life and need for high levels,
amoxicillin is usually administered along with probenecid.
An extended release formulation of amoxicillin+clavulanate (“Augmentin XR”) may also be considered if adequate trough levels are difficult to attain."

So it's quite possible that being on Amox by itself (if I'm understanding correctly) allowed the bacteria to gain some ground and when you started the Ceftin, it killed off a bunch of bacteria causing a long herx.

If you seriously increase your detoxing and your symptoms go down in any way, then you know it's a herx.

So I think you were right with both things - it was a very active infection while you were just using the Amox. (if that was the case), and then when you started the Ceftin, it became one heck of a herx!

I hope this helps some!!

cd3764 -

"I think that insurance companies would have a hard time fighting documented evidence (in the form of the symptoms records)....and especially when the new ILADS guidelines use the buzzwords they want to hear."

An interesting proposal! I am going to talk w/ my LLMD about this. I believe that the spreadsheet you mention in that post was shared with all of us by Rowingmom? But I agree, in some instances, the insurance companies would be challenged with documented history of your medical issues and symptoms. Thanks!

-p

Hi Daxwell,
I'm glad you tried MM - even if it didn't work so well for you, at least you know.

I just came through a 3 week herx myself, but I'm sticking to the same treatment that made me herx throughout my treatment I believe (of course this could change if I'm being completely honest!). I don't really believe in making yourself herx as much as possible, as that's a sign that the body has an overload of toxins and isn't functioning well - but I know that others on this forum believe that it's the way to go. I believe that symptom reduction is a much better (& safer) way to gauge healing.

Personally, I would stick with whatever was making your symptoms less severe. But if it's Amox, you need to be on something like probenecid as well to help keep the Amox in your blood stream longer to kill the bacteria - as per Dr. Burrascano and ILADS recommendations.

And before using a hard hitter like Rocephin, I would encourage you to get your herxing under better control by increasing your detoxing. The skin being so sensitive is a sign of a herx. I had that when I first started detoxing and was a bit tough for me to get through.