HealingWell
Search Close Search
☰

Is it Neuroborreliosis?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/2/2020 4:32 PM (GMT 0)
How do you know if you have neuroborreliosis? I don't have lyme but according to a relatively new Igenex article Tick Borne Relapsing Fever can cause it as well because they're a different species of borrelia. The main reason I think I have it, is because of slight cognitive issues (bad short term memory, hard to think sometimes, headache on one side of my head that won't go away unless I take chinese skullcap).

I have all of Buhner's lyme and coinfection books. Has anyone done his neuroborreliosis protocol? How long did you do it for? I'm currently on a bartonella protocol.

If I do start Buhner's Neuroborreliosis protocol, how long should I be on it for? I know licorice root is only tolerated for 4-6 weeks.

Current was tested by igenex and diagnosed with tbrf and Bartonella.

Igenex TBRF Neuroborreliosis Article: https://igenex.com/tick-talk/neurological-and-psychiatric-issues-associated-with-lyme-disease-and-tbrf/

Post Edited (Rhytenow) : 12/2/2020 10:07:43 AM (GMT-7)

Posted 12/2/2020 5:03 PM (GMT 0)
welcome - have u been tested with a reputable lab? if it was a regular doc with quest or the other then it was likely and antibody test which may or may not show a recent infection. if you believe it has impaired brain function then its likely systemic long-standing infection which would suppress any immune or antibody response. to learn about the politics of this flawed testing i suggest you watch "under our skin " documentary.
many have treated herbally with some success . treatment can take years depending on how long infections have been replicating. borrelia and bart don't t travel alone btw so dr horowitz calls it multiple systemic infection disease syndrome. or msids in his book how to get well . for a more whollistic approach dr klinghardt is a pioneer. keep us posted

i found my borrelia under a microscope at 1000x they're easy to see! also try a good dose of andrographis, if you herx it's hitting some kind of spirochete...there are hundreds of species of borrelia we test for 2..,

Post Edited (bluelyme) : 12/2/2020 10:06:13 AM (GMT-7)

Posted 12/2/2020 5:09 PM (GMT 0)
Yes, was tested by igenex and diagnosed with tbrf and Bartonella. Something's definitely going on in my head. I don't have the fuzzy haze around my head like I used to but there are some cognitive issues still there. I'm thinking what I was doing was working because I used to have headaches that hurt my entire head but now it's just the right side of my head.
Posted 12/2/2020 6:41 PM (GMT 0)
What about babesia?
Posted 12/2/2020 6:52 PM (GMT 0)
Yes, was tested for that. I did an extensive test that covered everything.
Posted 12/4/2020 9:14 PM (GMT 0)
Rhytenow said, "How do you know if you have neuroborreliosis? I don't have lyme but according to a relatively new Igenex article Tick Borne Relapsing Fever can cause it as well because they're a different species of borrelia. The main reason I think I have it, is because of slight cognitive issues (bad short term memory, hard to think sometimes, headache on one side of my head that won't go away unless I take chinese skullcap)."

I'm doing a Lyme Bart protocol right now (Dr. J's protocol, except modified a bit). I told my LLPA that I'd like to hit the bugs a little harder (I prob. have long-term Lyme and prob. neuroborreliosis to some extent). I've only done the crappy CDC testing at LabCorp, and have always been high in the Elisa part of it but only once showed a Western Blot marker.

When I add Flagyl to the 2nd week of pulsing abx, I get a Herx every time. On Thurs. & Fridays of the 2nd week, I take Flagyl (500mg, 2x/day). On Friday, I'm also taking Amoxicillin, Azithromycin, and Rifabutin. Every time, I Herx the next day, with some CNS/brain issues. Very foggy thinking, headache--and an unusual headache behind my eyeballs. I also had exhaustion & the chills, all day long when I was Herxing last Saturday, and early on Sunday.

My LLPA thinks that the Flagyl helps the abx go after DEEP Borrelia--even dormant, round-form. And Rifabutin is a kickass abx, which will go after Borrelia as well as Bart. Hope some of this might help your situation.

Post Edited (BlueRidgeDave) : 12/4/2020 2:19:55 PM (GMT-7)

Posted 12/5/2020 9:02 AM (GMT 0)

Rhytenow said...
Yes, was tested for that. I did an extensive test that covered everything.

Don’t rule out Babesia just because you didn’t test positive.
An experienced LLMD will consider treating based on a clinical diagnosis -
Posted 12/5/2020 11:42 AM (GMT 0)
"An experienced LLMD will consider treating based on a clinical diagnosis."

Can we at least acknowledge how hairy this is? Symptoms of Lyme and co overlap and are seemingly unlimited. It's basically trial and error which gets further complicated by the herxing phenomenon. I don't think there are many llmds who have a handle on what is really going on..

And who knows the damage years of heavy abx combos can do. BlueRidgeDave the fact that you feel worse after taking heavy abx might not be a good thing.. I don't know.. curious about the level of certainty of your LLPA

Sorry to be such a downer sad. I already have disdain for IDSA, but I am becoming increasingly disillusioned with ILADS as well.. just read so many stories here of people spending small fortunes without getting better.
Posted 12/5/2020 2:44 PM (GMT 0)
"I have all of Buhner's lyme and coinfection books. Has anyone done his neuroborreliosis protocol? How long did you do it for? I'm currently on a bartonella protocol.

Neuroborreliosis protocol, how long should I be on it for? I know licorice root is only tolerated for 4-6 weeks."

I did the core protocol + gou teng for about a year and a half.. then mixed and matched for another year or so. I could not handle tryptophan.. it would zombify my brain. Licorice I think I took 1/4 tsp for 6 weeks, off 2 wks, on 6 wks, etc.. not sure if the breaks were necessary for me at that dose.

Do you have neuroborreliosis? I don't know about TBRF.. will have to read from your link when I get the chance.. but you can have inflammation of CNS whether spirochetes are present or not. If following Buhner, remember how he stresses antispirochetals as last in order of importance.
Posted 12/9/2020 1:21 AM (GMT 0)
BTW, potsnpans--to answer your question, or comment: I certainly don't take it casually (or in any way humorous) that I'm using a pretty strong abx now such as Rifabutin (in the Dr. J protocol for Lyme/Bart). Also: I am on Rifabutin (along with 2 other abx) for 2 weeks (pulsing, M,W, & F). My Herx ONLY happens after the 6th day of pulsing antibiotics (when I'm also adding Flagyl on the last Thursday & Friday). In fact, my Herx happens only on the day after (following the last day of the protocol, a Friday)--on Saturdays and partway into Sunday. I've no doubt at all that it's a Herx, and not a reaction to the combo of abx--and my Lyme PA suspects that it's getting the deep or dormant Borrelia. I get neurologic symptoms, every time: peculiar headache behind my eyes, chills, exhaustion, air hunger, passing out occasionally, galore. I sure don't make light of these kinds of Herx symptoms, but if it's helping to get after the deep organisms I'm all for it. I pretty much plan on (after a couple more rounds of this Lyme/Bart protocol), focusing on a strictly herbal maintenance protocol, from then on. . . .

Sorry if I AM sounding defensive toward your remarks, but after being on abx for more than a year (treating what is most probably long-term Lyme), I told my Lyme PA that I'd just as soon hit the bugs a little harder, in these last few rounds of the (Dr. J's) Lyme/Bart protocol . . . by adding Flagyl into the protocol, for the last 2 days in the 2nd week as well as in the 1st week. The addition of Flagyl seems to make the other abx work more effectively, for me at least, and very possibly even makes them able to kill dormant (round-body form) Borrelia.

Post Edited (BlueRidgeDave) : 12/8/2020 6:33:21 PM (GMT-7)

Posted 12/9/2020 2:24 AM (GMT 0)
Herxing or not, I don't know that negative reactions should be thought of as indicators that you are getting closer to health. I'm probably in the minority here though.
Posted 12/9/2020 3:05 AM (GMT 0)
"I get neurologic symptoms, every time: peculiar headache behind my eyes, chills, exhaustion, air hunger, passing out occasionally, galore."

Compare to flagyl side effects listed here:
https://www.drugs.com/sfx/flagyl-side-effects.html

...how do you think people who are otherwise healthy would respond to flagyl on top of the other longterm abx? I think it'd be difficult to handle for many.. and as Lyme patients, we're generally going to be more sensitive.

I hope it works out for you though.. not trying to take the wind out of you sails and not suggesting you change course after coming so far. I'm just not very certain of anything and I don't think many of these docs have a clue either.. don't like how their theories are so often justifications for endless treatment.

Post Edited (potsnpans) : 12/9/2020 7:01:13 AM (GMT-7)

Posted 12/9/2020 5:59 PM (GMT 0)
I hear you, potsnpans. There is a great deal of uncertainty and subjectivity with these illnesses, and a medical establishment (including many LLMDs) that can range from ignorant to predatory. I think it makes sense to point these things out.

Rhytenow, the Chinese skullcap (like most herbs) has many purposes and mechanisms of action, so while I understand that its helpfulness could indicate a particular infection, it's not diagnostic. Chinese skullcap is helpful for headaches caused by any type of inflammation, oxidative stress, anxiety or tension, arthritis, vascular illness, etc.

Along the same lines, nervous system involvement also can come from a variety of causes, infectious or otherwise, especially if the symptoms are mild.

All of that said, there are dozens of species of Borrelia that cause disease in humans, and there aren't tests for most of them, so because you have some tick-borne infections, it's a safe bet to assume you might have some others that aren't possible to test for. (Plus unreliable testing, etc.) The beautiful thing about herbal treatments is that the protocols designs by skilled herbalists do so many things at once - address pathogenic organisms, regulate the immune system, reduce inflammation, modulate the stress response, etc. (Sometimes I think people with no history of tick-borne illness should try Buhner's core protocol, as I think everyone would feel better!) I would say that Buhner's neuroborreliosis protocol is a fine bet for you, provided your system tolerates it well. I would use it for at least a few months.

It is my understanding (definitely correct me if you've read otherwise!) that licorice is fine to take longer-term if you use a deglycyrrhizinated form.
✚ New Topic ✚ Reply