Severe polyneuropathy.

I think the IV abx is worth a try.

Do you have numbness or tingling or pain... or all three?

I don't know if bart is agravating polyneuropathy, so i'm concerned about do IV and only one drug... if i combine iv with an oral is so much? I want to discuss it with him.

It would be pulsed 12gr cefotaxime 4 days week.

Ups Girlie, you posted at the same time

If you haven't tried treating parasite you may consider it-ten days of ivermectin and albendazole should let you know if that is the issue.

OriolCarol,

Are you taking any B-Vitamins? Multi-Vitamin? B-Complex?

If YES, check to see how much of Vitamin B6 (Pyridoxine) you're getting from ALL supplemental sources. Vitamin B6 is sometimes added to other supplements, too, so check any/all supplements and add-up the total you take in a day.

If NO, then you may want to read about how Vitamin B6 can be helpful for neuropathy. BUT, the dose/response curve is parabolic! Too little, there's no effect. Too much, it can CAUSE neuropathy.

The recommended intake of Vitamin B6 depends on what source you read. But, 50-100 mg daily seems to be about the average recommendation. Some suggest up to 200 mg.

Finally, it's the TOTAL amount of Vitamin B6 (Pyridoxine) that matters. That means food sources PLUS supplemental forms.

You can search online for a list of which foods are high in Vitamin B6 and use websites like nutritiondata.self.com or /ndb.nal.usda.gov/ndb to see how much Vitamin B6 is in various foods. Then, you can get an idea of how much you're ingesting in a day.

I'm sorry you're going through such a frightening experience. I'm not a "religious" person (more "spiritual"), but will pray for you to find relief and healing.

Sincerely,

The Dude

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UPDATE:

The above link that discusses the advantages of B-Vitamins for neuropathy mentions MORE than just Vitamin B6. I was only aware of B6 being used, and, thus searched for an article citing evidence of its benefit. But, the article is very long and I didn't read it in its entirety. (What can I say, I'm lazy.) Now, in reading the article more closely, there are additional factors mentioned and other supporting articles hyperlinked in the text. Thus, I highly recommend reading the full article.

/www.salubrainous.com/vitamins-minerals-for-peripheral-neuropathy
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Post Edited (The Dude Abides) : 5/30/2018 9:28:04 PM (GMT-6)

I don't know ifit will be read by bluelyme. But do you have any experience about claforan?

OriolCarol said...
Thank you the dude Abadies. Do you think is good shoots of b12 methyl? Better than cobalamin?

First, I must emphasize the fact that I'm not a Doctor, Nurse, or any other type of healthcare practitioner. So, before making any changes to your supplement protocol, be sure to discuss the matter with someone knowledgeable. After all, I could be a crazy person!

Now, with that stated, here's what I found online:

Cobalamin is a general term that is referred to a number of compounds, that have cobalt ion in the middle, hence the name of the compound. Cobalamin may refer to several chemical forms of vitamin B12. These are:

* Cyanocobalamin
* Hydroxocobalamin
* Methylcobalamin (an active form of vitamin B12)
* Adenosylcobalamin (also an active form of vitamin B12)

So, again, "Cobalamin" is a generic term for any of the four compounds I listed. The Wikipedia article from which I took the information shows "Methylcobalamin" and "Adenosylcobalamin" as being the "Active Forms" of Vitamin B12.

But, as you read about the different types of Vitamin B12, you will find that which one to use depends on the goal one is trying to achieve.

For Neuropathy, I find Methylcobalamin mentioned.

As for getting injections of Methylcobalamin (which I believe was your question), that is certainly an option. I'd suggest discussing with your Doctor whether Supplemental B12 is advised, and, if so, whether it should be injected or taken orally.

In the article 5 Proven Benefits Of Vitamin B Complex For Neuropathy, one of the recommended products is Thorne Research: B-Complex #12 and it contains Methylcobalamin AND Adenosylcobalamin -- 300 mcg of each.

This supplement contains other B-Vitamins, too -- including 23.4 mg of Vitamin B6, plus others.

I hope some of this proves useful.

The Dude

Right, serum levels of various things are transient and don't tell one what's actually in cells or organs.

Although I've not used them, the lab SpectraCell is supposed to test what's in our cells.

/www.SpectraCell.com

But, is it REALLY helpful? I wish I knew.

My opinions are always evolving, but, currently, I think there's a lot time, effort, and money being wasted in many "health" pursuits. Lots of expensive tests, treatments, and supplements focusing on isolated factors at the exclusion of endless others -- mostly, I believe, simply due to lack of knowledge.

Humans simply don't, can't, and will never know everything.

Hi there

I haven't been on here in ages due to family obligations but stopped by today and saw your thread. I was obviously motivated to post. My signature tells my story.

So very sorry to hear you're dealing with these issues!

While I can't speak to IV abx, I can tell you that polyneuropathy (PNS) was my main issue with these infections.

It amped up on abx and then improved but it was still very much there there when I transitioned to herbals. After a good 22 months on herbals and tired of playing my own doctor, I moved to maintenance doses of a few herbs and hired a holistic NP to help fill in the many blanks I had after seemingly a gazillion hours of research.

Her first suggestion was methyl B12 shots and I got my first shot in her office. All I can say is holy smokes on how much it tamed my neuropathy (for a little while). Don't get me wrong, the neuropathy was still there but smoother/lighter/less dramatic (so very hard to describe) but this was the first time I experienced notable improvements.

My first Rx was for 3 shots/week (self-administered...very easy) and there was a major difference between the days I had the shot (significant improvements) and the days I didn't.

The NP moved me up to daily shots and I am beyond thrilled to report that the polyneuropathy is slowly abating.

There might be a quick second or two of facial or toe numbness on one day or maybe a light twitch...maybe some tingly toes for a bit. The more recent isolated stings seem to be gone. Full/partial face or left leg/toe numbness have been things of the past for awhile as are the buzzing/humming and/or buggy sensations I had. My urinary issues are finally gone.

The pathogens scavenge the myelin sheath that covers our nerves since it contains nutrients for them.

B12 is a vital component of nerve metabolism and Lyme patients with neuropathy clearly need more B12 than the average Lyme patient (who usually requires more than a healthy person)

I'm also taking omega-3 supplements since my testing showed my levels/ratio to be inadequate. Omega-3's are also a vital part of nerve health.

There are several other nerve-related nutrients for which deficiencies often exist in those with Lyme.
My NP ran an Organic Acids Test that was very helpful in identifying what I needed:

/www.greatplainslaboratory.com/organic-acids-test/

Other companies offer the test as well.

Hopefully, you're following an anti-inflammatory diet because there are many things (dairy/gluten/sugar/pesticide residue, etc.) that can aggravate neuropathy in those sensitive to them.

Best wishes to you moving forward!

Hi Girlie - I've missed being here and it was the odd occasion that allowed me to be here. Hope you are heading in the direction you'd like.

No B12 testing since doing the shots (October 2017 was my start date). I'd been supplementing with methyl-B12 (I'm hetero C677T MTHFR). Not only was I taking it sublingually but also as a component of my multi as well as the activated B complex I took for over a year. I was significantly over-range with those.

I apologize for not being able to dig for the reference, but I can tell you that my research indicates optimal/healthy B12 levels aren't really known.

In general, lab ranges reflect the results of those attained from people who get bloodwork done regularly....and it's known that most people getting bloodwork frequently have health issues which means lab ranges are skewed towards unhealthy levels.

I'd stopped my supplements to get a baseline when I had my first appointment with the NP. Unfortunately, family issues once again delayed things and my neuropathy had worsened by the time I was finally able to meet her.

The supplements were obviously helping but they weren't enough.

It's taken a lot to heal my short-circuiting nerves...especially when pathogens were/are still present and scavenging nutrients. Inflammation also plays a big part and we all know that's exactly what our immune systems create as a result of these infections.

The longer I've been dealing with these infections, the more I've come to believe that it takes a holistic approach to heal and the new way of living needs to be maintained if we are to stay symptom-free.

LymeKneeZ - I’m not clear on what you mean.
Are you saying not to treat Lyme disease - just retrain the brain?

But if you have active infection - you need to treat it - retraining the brain may be helpful in repair but I don’t think you should be leaving an active infection continue.