Exercise intolerance

running wild,

What you said about getting sick every time you pushed hard, OMG, that was me!!!

I was a tomboy when I was little - the only girl with 6 boy cousins. I loved playing outside and tried to do everything they did. Every single time I played really hard and got hot and sweaty, I would get sick the next day with a sore throat and a cold and often it went to my ears. Had chronic ear problems from infancy to age 8.

As a result, I learned that any time I pushed hard, especially outdoors, there would be consequences. I didn’t get to fully enjoy all the things I wanted to do because of that.

As I got older, the same would happen under stress. Around exam time or holidays, I would get sick with a cold/sinus infection, especially if my period happened to be around the same time. It never failed. My immune system just wasn’t strong. My immune system would dive around my periods. I suspect bartonella is the reason. I would often get low grade fever and fatigue along with sleeplessness and feeling like I was getting a sore throat around my periods, especially in my teens and early 20’s.

I would always get sick with head stuff. Oddly, I rarely ever got the actual flu or stomach viruses. I seemed to be pretty immune to those.

logmoss82 said...
Charlie- I know we are getting a bit off topic here, but I just wanted to mention that i agree with your point about bartonella being an extremely stubborn infection, but when you say herbs dont cross the blood brain barrier, this is simply not the case. They absolutely do. So many of them, i wont name them all. Ginko Biloba, is one. Cannabis is another. If marijuana didnt cross the blood brain barrier- non one would smoke it.

The key word here is "adequately" enough, none on of the herbs have the half life or bioavailability of drugs like disulfiram and dapsone, even pyrazinamide.

We can argue to we're blue in the face, sadly I haven't seen any herbs strong enough to treat bartonella despite what Cowden claims.

Doing the same thing over expecting different results is insane right? That's what many are doing and then they go on the forums arguing which one works better, while majority are still sick.

Even the traditional bartonella antibiotics like bactrim, rifamping, mino, and biaxin all have their drawbacks. Lets admit these drawbacks and move on from here, not act like herbs are going to still cure bartonella when they haven't been.

I'm a huge advocate for herbs for biofilms, even persister cells like oregano, which a study has shown oregano targetting persister cells. However, crossing the blood brain barrier and absorbing deep into a tissue is a huge problem of herbs.

And if you want to compare intravenous antibiotics to herbs, give me a break, herbs will never compare.

logmoss82 said...

I would just warn anyone reading this, dont overlook herbals as just 'snake oil.' Theres is at least SOME efficacy there. I too used to believe these plant peddlers were just snake oil salesmen too. If I would have gotten over that misconception sooner, I personally believe I could have beat lyme in a year instead of suffering through it for nearly 4 years. Sometimes our perception can be our own worst enemy.

It is snake oil claim when owners like Cowden claim it's going to cure their bartonella in 4-8 weeks. There's probably hundreds of patients on this forum and I'm sure not one has every cured their bartonella in 4-8 weeks. This is snake oil philosophy and claims, anyone who's had chronic lyme know for years know it's all just a marketing ploy to get new lyme patients money, that's all it is.

Do herbs work? Yes, but they are limited on their efficacy, I pointed out their limits, and lets move on....

Ya know this was just a response to Aerose91 because he said herbs did nothing for him for bartonella, they didn't do anything for me either and I was getting sicker and sicker, almost to the point of hallucinating. As I pointed out, I think they helped a lot in the treatment of babesia, a different type of pathogen. But it's quite obvious that some pathogens effect the brain worse than other, not something I'd take a risk with... Knowing the outcome with bartonella.

I'm still a big advocate for herbs and supplements, but I'm a realist when it comes to the treatment of chronic persister cell infeciton like Bartonella.
https://catchingkim.com/2019/06/26/psychiatrists-and-bartonella-stole-my-sons-life/

And it's highway robbery what Cowden charges for a 1oz tincture, he takes advantage of patients, sorry it's not so obvious to you... You can get a 90 pills of Disulfiram for $12, his stupid 1oz tincture costs $60. It's SNAKEOIL! You can get a 2oz Cats Claw tincture for $10 on Amazon. All he does is switch the names around, claims it has some magical solution that's TOA free to sell his product 6x the price, to me that's snake oil. Even Buhner thinks this is ridiculous.
https://www.clinicaleducation.org/news/clinical-pearl-solved-the-false-toapoa-controversy-surrounding-cats-claw-by-stephen-harrod-buhner/

Post Edited (Charlie55) : 12/16/2019 7:30:17 PM (GMT-7)

Girlie said...
Jap knotweed crosses blood brain barrier

Has it cured bartonella yet? Any patients making claims, again how adequately does it cross the barrier girlie?

Man we go through this over and over again, back to this statement....

Charlie55 said...

Doing the same thing over expecting different results is insane right? That's what many are doing and then they go on the forums arguing which one works better, while majority are still sick.

Wish everyone the best with treatment, we've learned a lot more in the last few years about the microbiome connection to autoimmunity, why a drug like Disulfiram may be work better than antibiotics/herbs because it's just not about killing. Evolve and adapt, don't keep doing the same thing over and over again expecting different results.

Disulfiram kills persisters without harming the microbiome, targetting both chronic infection and autoimmunity, along with passing the brain barrier efficiently enough, does any herb do that? Case closed...

Dr. Lewis said...

That treatment is based on the observation that 'chronic' Lyme symptoms bear a resemblance to some auto-immune diseases that arise because of a bacterial imbalance in the gut, or what is known as the 'microbiome.'

Ironically, those imbalances in Lyme patients may be caused by the very drug that cures the disease in most people, doxycycline.

Broad spectrum antibiotics like doxycycline that are used to treat acute Lyme Disease of course they wreck the microbiome and they paradoxically can be a contributing factor to devloping PTLDS," Lewis said. That's because they do not selectively kill Lyme Disease bacteria.

The potential treatment may be, for some, a tough capsule to swallow: It's a treatment known as FMT, which stands for Fecal Matter Transplant.

Healthy donors provide fecal matter. That is put into pills so it becomes properly palatable, and you just take it like any other pills.

Post Edited (Charlie55) : 12/16/2019 7:46:09 PM (GMT-7)

WalkingbyFaith -

Being sick a lot as a child with ear issues- do know if your white blood cell counts were low at all in the past?

Or this decade?

Girlie said...

Lol Charlie!

I was responding to herbs crossing the B/B barrier....

I don’t know if it cures Bartonella - it is one of the Buhner herbs for it.

It's a great question, Bartonella infects the brain causes very severe neurological symptoms like psychosis and schizophrenia, in all the stories you've heard with bartonella, has it ever cured bartonella? Aerose91 even mentioned he's experience one of these, herbs didn't work for him, I'm trying to stay on topic with him and you.

Also another question, does your own Lyme Literater Doctor, Dr. J, who's a top lyme literate physician, does he prescribe it as a top treatment for neurobartonellosis? You should ask him if he thinks it would adequately cross the brain barrier and adequately treat bartonella?

Why are we even debating about this with you Girlie? When you yourself rely mainly on Dr. J and the antibiotic treatment he uses. Sounds like you want to just argue for the sake of arguing... really does...

dcd2103 said...

I have no idea to what extent Dr P cherry picked the studies (seems like you can always find a study to say what you need on any side of the argument in Lyme land), but he does mention some cases of autoimmune illnesses resolving after successful antiobiotic treatment, which was great to hear. I think that the take-away is that it proves my point all along, that lyme/coinfections cause autoimmunity. He does a great job of demonstrating that the bacteria persists in many cases and often responds to subsequent antibiotic treatment, but none of this proves that some of us who dont get better aren’t struggling with lingering autoimmunity.

Cherry picked... lol

dcd2103 said...

I think that the take-away is that it proves my point all along, that lyme/coinfections cause autoimmunity..

Again yes autoimmunity is a factor, but it isn't the only factor and what Dr. P said in his presentation doesn't entirely prove your point all along, sorry it doesn't. It really sounds like you're still going back to the title of your thread "Proof chronic lyme is just autoimmune," after you apologized in that same thread saying it was egotistical to think that autoimmunity would cover the entire lyme community. Maybe I'm paraphrasing a little, but that's what I got from your response after I chimed in and brought up new studies like the Sapi study and the Yale study which you obviously knew nothing about.

I get one of those NYC Soccer Heads vibe from you, lol... But it's totally cool man, I enjoy our conversations...

dcd2103 said...

Regardless, I thoroughly found it interesting, and I will look into bartonella deeper, especially since I did grow up w cats. Problem has been finding a LLMD in NYC or even just outside who doesn’t have a years long waitlist. Anyone you know about or really like? Anyone try dr R(axlen)? Will call dr P tomorrow, see how long his waitlist is. Where you from btw?

Good to hear... That is a problem and sounds like that may be a problem why you haven't progressed with longterm antibiotic treatment...

Michigan, the LLMDs are sh!tty here and not very many of them, I'm seeing the best one for bartonella and he's basically the only one that is educated in coinfections, the other two are off in lala land thinking monotherapy with low dose minocycline is going to cover all the coinfections even babesia, and the other one found jesus. As he wanted me to go to his church group after my bartonella neuro symptoms that just sprung out of nowhere, lol. Just be aware not all LLMDs are created equally, a lot of them don't know anything about treating babesia or bartonella.

Look, I was in the same boat and took it upon myself to find a source of the persister cell drugs that the top LLMDs like Dr. K or Dr. H are using. You being in NYC, I know you do have some LLMDs in the area, even out of state, but like you said there's waiting list and all the top LLMDs cost big bucks...

Sometimes you gotta do what you gotta do stay alive and heathy, I did just that, and I'm better for it.

Someone asked me once am I scared about the side effects of these persister cell drugs, I remarked back I'm more worried about contracting a permanent autoimmune condition like Michael J Fox or Ben Petrick than anything. Both you and Astroman are right, due to letting the infection go for too long, you can develop irreversible affects to the body, like the thyroid for instance. I wasn't waiting around for a cure or for any of these Michigan LLMDs to play catchup... And what you know, 10 years later from when I first contracted Lyme, I see that none one of them is using Disulfiram, and none of them have changed the drugs or protocols they use, they won't even use Dapsone. Bottom line, the top Michigan LLMD knows of disulfiram, but he still thinks it's too risky for his practice because of the stories he's heard of some lyme patients ending up in the hospital from herxing and psychosis. Remind you, many Doctors get sued and have their license removed to this day.

dcd2103 I'll say this, I think what it comes down to with chronic lyme is experience, unless you've treated with some of the best protocols and doctors, seen how this disease comes out of it's autoimmune and infectious state back to normal, you'll still be confused on whether it is solely autoimmune or an underlying infection.

My personal opinion is I'd say above 70-80% of chronic lyme cases are reversible... Maybe more, maybe less, I'm not sure... But chronic lyme being reversible is in the high percentile despite what the crooked IDSA and CDC claims.

You know Mandy Hughes from Under Our Skin let her Lyme Disease go for 10 years right, tried it the IDSA way, she didn't heal. She went on intravenous antibiotics for like 7-8 months straight and she was back to almost perfect condition, she went through herxing hell, but she came out the other side healthier... There's no way in hell you can say she improved that quickly in 7-8 months with an autoimmune condition she's had for 10 years. No frickin way...

There's tons of people like that, including me.

While some of us still relapse, we're all in a lot better place due to her aggressive longterm antibiotic use.

Now that Dr. Kim Lewis and others like Dr. Rajadas discovered that an imbalanced microbiome may be keeping us from reaching remission. Hopefully the new lyme patients won't have to go through a decade of hell I went through and maybe only a 1-2 year of treatment with Disulfiram, maybe even less, will help them reach remission. I'm not sure, we're still in unknown territory... But I'll say this, we have a lot more proof an underlying infection we did a decade ago... And the persister cell drugs to back it up! What you do with the information is up to you dcd2103, some sit around and play tiddlywinks with herbs thinking it's going to cure them, basically doing the same thing over and over again thinking they're going to have different results, even ignoring threads that are posted about disulfiram and dapsone on a daily basis. Then when they do chime in, claiming how do you plan to reach remission without treating heavy metals and mold? Look, there's so much misinformation and disinformation out there about this disease, some even coming from the lyme community themselves, it's really not funny, some are still going by what alternative medicine has said a decade ago about mold, parasites, and heavy metals keeping lyme chronic. Some think they still have the cure while they're still actually very sick like this guy NB protocol, who goes around putting antibiotics and drugs like Disulfiram on blast, while his protocol saves everyone.
https://www.youtube.com/watch?v=8copz0yqghu

NB Protocol said...
Using Disulfuram is really dumb. It is really bad for the liver and has resulted in fatal liver failure.

Stephen Buhner does the same thing, after reading this thread...
https://www.healingwell.com/community/default.aspx?f=30&m=4148772

The top LLMDs start using Stevia for biofilms as per Dr. Sapi's work, which is a herb, then both Rawls and Buhner say it doesn't absorb into the gut, lol, then the pro-herbalist community starts repeating this stuff on the forum like a parrot. The tribalism is so obvious to me... lol I point it out and people get pissed! I know Rawls said that, can't remember what Buhner said, I know he thinks biofilms are a hysteria supposedly...

NB Protocol said...
I am not a big fan of the biofilm hysteria that is common among the lyme community right now. ALL bacteria form biofilms. It is just a grouping of bacteria together in one location and the formation of a kind of rigid structure, similar to coral formation in the oceans, that they use to protect themselves. This is just ONE of a great many mechanisms bacteria use to protect themselves from immune responses or antibacterial substances and so on. It is no more dangerous or important than the bacterial ability to use efflux pumps to remove antibacterial substances from their cells or to use the immune system itself to hide from assault. Most herbal medicines are effective against biofilm formations just as are most immune systems. A biofilm may slow down effectiveness of immune response or herbal antibacterials but it does not stop them. It is not the terminator of bacterial protection. Biofilms have been around for eons and plants and immune systems have developed mechanisms for dealing with them. I would not worry about them as of being of particular importance in becoming healthy.

I point out some of the snake oil salesman and I end up becoming the bad guy... I don't think Buhner is a snake oil salesman as he does throw out some pretty good about knowledge about the reisistance of coinfections, but Cowden who takes something like cats claw, switches the name and bumps up the price about 6 fold is without a doubt a snake oil saleseman after he claims his herbs will treat Bartonella 4-8 weeks. This a guy you need to save your strength for dcd2103, not me. lol

All in all some people like believing in a fairy tale that herbs are going to cure them and that God is going to save us from climate change, but neither is going to happen, you have to really study science hard to beat this disease.

Post Edited (Charlie55) : 12/16/2019 11:09:59 PM (GMT-7)

Charlie “Why are we even debating about this with you Girlie? When you yourself rely mainly on Dr. K and the antibiotic treatment he uses. Sounds like you want to just argue for the sake of arguing... really does...”

I’m not debating it - I was “just” saying JK penetrates bloodbrain barrier.
I am on abx - and am not saying JK does or doesn’t treat bart effectively.

I see Dr J - not Dr K.

Unfortunately, rifampin did absolutely nothing for my bartonella infection. It did, however improve my digestive symptoms slightly. Azithromycin seemed to help slightly more, but I started to get irregular heartbeats and diarrhea from it, and I had to stop. I never tried pulsing, but I'm not sure it would have helped in my situation.

The a-bart drops helped significantly, but I had to stop those also, because I was feeling so much worse from too much die-off or whatever. Now the bartonella seems to be going away by itself.

My point is that even if something works in theory to kill bartonella, it might make a person feel too much worse to be able to tolerate it.

Yoga teacher here! Your body is not ready for intense exercise yet and that’s ok! I have a closed, free group for Lyme and yoga you can join. Let me know and I’ll message you the FB group.
Bottom line is you need to be doing work on all the systems of the body and this isn’t just about moving the body ; it’s working nervous system and other components for well-being