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Part 3 - I learned what Lyme really is and wanted to share - may be upsetting to some!!!

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Posted 9/20/2016 6:45 PM (GMT 0)
Girlie~I know-lol! And I will be heretofore referring to it as "antifingles" (much more cheery sounding than fungal!). Thx for your update.

And thx, Trav. You are a dear one in helping IHL - & SO many!
Posted 9/20/2016 11:29 PM (GMT 0)
Happyjo- I tested positive for something called Glomus mosseae. Don't even bother googling it, there is literally no information. It's a Protozoa/fungi from what my doctor and dr fry told me. So I am currently on an antifungal called terbinifane in conjunction with doxy and flagyl.

I get labs every 3 weeks. I still have a picc, so it's convenient. My doctor was telling me that the Glomus thing usually is dead after about 6 months of aggressive treatment. But who really knows? I don't know if I even believe that it's capable of making me sick. Desperation tends to drive a lot of the medical decisions I am forced to make.

From what I understand, you can't kill the blebs. The cell needs to die (aptosis means cell death) in order for new healthy ones to grow. I can see why ILADS says to kill all the spirochetes and that will bring you into remission. I don't really believe that though.

I'm starting the think what happens is you get Lyme, all the viruses reactivate (which makes even more mutated B cells), and then all the opportunistics like coinfections. It seems logical to think that killing the bugs would stop the blebbing, but this "theory" about immune destruction doesn't seem to point in that direction.

Most people do get better from extended treatment. Some don't, and this could be why. I'm still trying to figure out why killing spirochetes doesn't stop the blebbing and then destroy the immune system. I guess some people just don't ever get the chance, because of stuff like EBV doing it as well.

Hurumph.
Posted 9/20/2016 11:45 PM (GMT 0)
IHL, I think it also comes back to how hard it is to actually kill the spirochetes.

I've been on aggresive antibiotic treatment for 1 year, often on 3 or 4 at a time. I'm doing Buhner, and have a bunch of supplements recommended by Horowitz.

Yet, at any given time I can put my blood under a microscope and find spirochetes. I think a lot of people don't get better because, to be frank, our treatments aren't touching anything.

EBV, other stuff like that causing immune issues can definitely happen too, but I think the simple lack of ability to rid the body of these foreign invaders is sometimes overlooked.
Posted 9/22/2016 1:19 AM (GMT 0)
You know, a lot of stuff I've read points to spirochetes being basically indestructible. Everyone can agree that you'll never kill every last bug. I don't see why killing as many as possible could ever be a bad thing. But we all need to make informed decisions for our own health. I don't think anyone should take lightly how disgusting of an amount of abx we sometimes take. I am always asking myself if it is worth sacrificing my gut flora for.

I'm feeling a little upset by Horowitz. I keep seeing on Lyme groups about how he drops patients for compliance due to them ending up in the hospital or not taking his first reccomendation. These doctors work for us, not the other way around. Maybe the fame got to him. I dunno. I went through his 16 point map that he's constantly bragging about and I didn't get better. So. Hurumph.

The issue I see in all Lyme patients is an inability to clear the bacteria on our own. Our immune systems can't do it. And even once they are all dead some people remain very ill. No one knows why. Is it because they aren't really dead? Is it permanent damage? Is it because our immune systems are destroyed and we keep catching things and are more sensitive in general? Is it a mix of all these reasons? Something we don't quite understand yet?

The 64 million dollar question.. Spirochetes are ancient fungal shedders. Maybe they really were genetically engineered in someone's lab. That leads to asking if it was on purpose or an accident. I actually made friends with a woman that worked as a microbiologist in a lab manipulating genes of all kinds of stuff. Very interesting woman, and horrifying stories if what she says is true.
Posted 9/22/2016 4:48 AM (GMT 0)
IHL~ Aptosis- the speak & say on my iPad just mutated that word, too...Anyway, anther word to add to this cray vocabulary! (aptosis, necrosis, cirrhosis...osmosis...Norse myth walkyries...glomus..*Note to self, don't babble online after taking ambien).

So the glomy moss (yeah, I know, glomus mossea) can indeed be found, & I would include links, but this apparatus I am on likes to blip mid sentence when I go to cut & paste & I am currently mentally challenged enough with the sleep meds kicking in.

Didn't realize you were still with the IV. And 6 mos for the terbinafine-yipes! I tried it once recently & for a day & 1/2, I was woohoo--("Awakenings" or "Flowers for Algernon"-- this is what feeling normal & great is?!). And then somehow, over did it with the powerful drug sending me sliding back into the slime. I backed off to allow the body to recover...

Plan on going back on it & but with the possible side effects, it really scares me! Doc said could be initially laid up in bed for 4 wks & I am pretty stable now, not wanting to rock the boat.

But the groovy ghoulies do still visit, mostly in the p.m. (tho not nearly as horrid as b4!) so I need to commit to taking the "antifingals " :) as it could be what finally kicks the remaining ka-ka.

U sound very lucid, IHL, voicing all the ways you are looking at these things. That's huge that your noggin is still functioning! I know it's still rocky, but good of you to ponder & take time to share. How are your symptoms & how is your wee one?

As for the lab enhancement of the buggers, I'm pretty sure that is why all the new "treatment" ctrs are popping up, & a new slew of scientists cranking out possible ways to deal with the growing infected population. That way they can, in artful dodger fashion, sidestep the known biowarfare mishaps, culpability & then continue other monkey lab play with alleged remedies...

And you said it, sista, the lab is now more than alchemy with some very frightful DNA tampering. We thought the DNA Monsanto food crops (or is it Bayer now?), & mozzie manipulation was Frankenstein insane, or the crazy biolab warfare unbelievable? Now add to that mucking with genes that who knows what sci-fi awaits us!

Ok, words eating space & this another long thread. Good hearing from u, IHL. And interesting discussion with all here. Over & out.

Post Edited (happyjo) : 9/22/2016 8:39:18 AM (GMT-6)

Posted 9/22/2016 5:15 AM (GMT 0)

IHL said...
Happyjo- I tested positive for something called Glomus mosseae. Don't even bother googling it, there is literally no information. It's a Protozoa/fungi from what my doctor and dr fry told me. So I am currently on an antifungal called terbinifane in conjunction with doxy and flagyl.

I get labs every 3 weeks. I still have a picc, so it's convenient. My doctor was telling me that the Glomus thing usually is dead after about 6 months of aggressive treatment. But who really knows? I don't know if I even believe that it's capable of making me sick. Desperation tends to drive a lot of the medical decisions I am forced to make.

From what I understand, you can't kill the blebs. The cell needs to die (aptosis means cell death) in order for new healthy ones to grow. I can see why ILADS says to kill all the spirochetes and that will bring you into remission. I don't really believe that though.

I'm starting the think what happens is you get Lyme, all the viruses reactivate (which makes even more mutated B cells), and then all the opportunistics like coinfections. It seems logical to think that killing the bugs would stop the blebbing, but this "theory" about immune destruction doesn't seem to point in that direction.

Most people do get better from extended treatment. Some don't, and this could be why. I'm still trying to figure out why killing spirochetes doesn't stop the blebbing and then destroy the immune system. I guess some people just don't ever get the chance, because of stuff like EBV doing it as well.

Hurumph.

I tested positive for Bartonella, Babesia (Equivocal), high positive for Lyme disease, EBV IGG positive and Mycoplasma IGG positive. I've been on antibiotics for a little over 7 months. Started with Doxycycline, had terrible psychotic like episodes. Felt derealized, spacey and impulsive. A month into treatment the doctor put me on a strong dosage of Malarone and rifampin. Still had terrible anxiety, odd thoughts and this inner restlessness that I couldn't seem to kick.

Keep in mind I had ZERO joint pain. Took these antibiotics with enula, semento and a few other Cowden products for three months. One month of Doxy, four months of Malarone, Doxy and Rifampin and nothing seemed to be getting better.

Went on IV rocephin Picc line w/ minocycline, malarone, and zithromax. Been on these antibiotics for two months now and I have TERRIBLE joint, skin and muscle pain accompanied by fatigue that is severely impacting my life. On the plus side, most of my neurological symptoms have dissipated except for the occasional anxiety flare ups but these are likely antibiotic induced.

Why have I developed these symptoms? The IV antibiotics obviously helped to clear my neurological symptoms but how come I have this debilitating joint pain? I know that two antibiotics can induce cell-wall deficient forms; maybe they traveled to my joints? Maybe the antibiotics are reaching my tissues? Maybe my immune system is getting stronger and fighting the bacteria? Maybe it is the shedding of the blebs?

What concerns me is that I'm in the end stages of my treatment and I'm not better yet. If anything I'm worse because at least I could go out and do things with my neurological symptoms. Now I barely can get out of bed because of the pain. Is this normal?

This seems like what is happening to me: http://www.ncbi.nlm.nih.gov/pubmed/26356494

Was diagnosed with Meningitis like symptoms three years ago, was most likely Neuroborreliosis , IV rocephin helped to clear symptoms but developed terrible tendon, bone, muscle and joint pain. Has been nearly two months and will not go away. Neurologist was thinking of doing IVIG immunoglobulin but I'm really not sure if it will work.

Post Edited (birthdaysuit) : 9/21/2016 11:36:40 PM (GMT-6)

Posted 9/22/2016 5:44 AM (GMT 0)
Plasmapheresis seems interesting, however, it removes autoantibodies from the circulation but required is simultaneous medical and immunosuppressive therapy for long-term management.

This seems like this could severely hurt someone with Lyme disease in acute infection, not sure about chronic though. But then again, Lyme usually hides in the bones, tissue and joints. So it most likely wouldn't help.
Posted 9/22/2016 6:25 AM (GMT 0)
Why do you say you're in the end stages of your treatment?...if you're not better - i.e. symptom free..then why are you in end stages?

You treated bart with rifampin for 4 months only? That really isn't enough time.
Posted 9/22/2016 8:53 PM (GMT 0)

Girlie said...
Why do you say you're in the end stages of your treatment?...if you're not better - i.e. symptom free..then why are you in end stages?

You treated bart with rifampin for 4 months only? That really isn't enough time.

Financial and insurance coverage wise I'm in the end stages of IV and antibiotic treatment. That all depends on if I get future coverage but not likely. Rifampin made me crazy but I experienced zero joint and bone pain. Now that I've stopped I have terrible joint and bone pain.

Going to see LLMD in October.
Posted 9/22/2016 10:53 PM (GMT 0)
Oh, I see - end of IV abx.


Good you're seeing a LLMD soon.
Posted 9/23/2016 1:20 AM (GMT 0)
Birthday. ..rocephin is just bacteristatic to bartonella ...i agree with mustard my my microscope shows its intercellular ...and venom and iv abx was barely killing them ...i think the guy on summit is right 24 peptides and like strep has 4 ...superbug ..the fungal thing is interesting ..as people noticed that when on diflucan it stopped the efflux pump making them succeptable to abx ...? My llmd said abx seem to not work after a bit but things like herbs and h202 and silver are still hitting it
Posted 9/24/2016 5:37 PM (GMT 0)

bluelyme said...
Birthday. ..rocephin is just bacteristatic to bartonella ...i agree with mustard my my microscope shows its intercellular ...and venom and iv abx was barely killing them ...i think the guy on summit is right 24 peptides and like strep has 4 ...superbug ..the fungal thing is interesting ..as people noticed that when on diflucan it stopped the efflux pump making them succeptable to abx ...? My llmd said abx seem to not work after a bit but things like herbs and h202 and silver are still hitting it

Interesting. I'm told though, that rocephin is bacteristatic to Lyme spirochetes as well.
Posted 10/24/2016 12:12 AM (GMT 0)

bluelyme said...
Birthday. ..rocephin is just bacteristatic to bartonella ...i agree with mustard my my microscope shows its intercellular ...and venom and iv abx was barely killing them ...i think the guy on summit is right 24 peptides and like strep has 4 ...superbug ..the fungal thing is interesting ..as people noticed that when on diflucan it stopped the efflux pump making them succeptable to abx ...? My llmd said abx seem to not work after a bit but things like herbs and h202 and silver are still hitting it

Do you post any videos of your blood under the microscope that would be awesome!
Posted 10/24/2016 5:26 AM (GMT 0)
I haven't had time to look at any of the replies on this thread yet or the second link... But as for the first link, I don't know much, but AIDS can kill you quite quickly, and yes, this is because it shuts down the immune system. If you get a cold and you have AIDS, there is a chance that it could do you in for good (a cold just being the example here, there are many other things). However, I couldn't begin to tell you how many colds that I have had over the past 5 years, I would sometimes get up to 3 or 4 in a year, plus the flu even up to two times in the same year. Once I changed my diet, I stopped getting sick. I haven't had a cold or the flu for a year and a half now, and this is no coincidence. Also, I was not on the verge of death every time I got sick. I may not be an expert on this stuff, or anywhere close to one, but this just didn't make sense to me...
Posted 10/24/2016 6:15 AM (GMT 0)

klwxo95 said...
I haven't had time to look at any of the replies on this thread yet or the second link... But as for the first link, I don't know much, but AIDS can kill you quite quickly, and yes, this is because it shuts down the immune system. If you get a cold and you have AIDS, there is a chance that it could do you in for good (a cold just being the example here, there are many other things). However, I couldn't begin to tell you how many colds that I have had over the past 5 years, I would sometimes get up to 3 or 4 in a year, plus the flu even up to two times in the same year. Once I changed my diet, I stopped getting sick. I haven't had a cold or the flu for a year and a half now, and this is no coincidence. Also, I was not on the verge of death every time I got sick. I may not be an expert on this stuff, or anywhere close to one, but this just didn't make sense to me...

One huge difference between HIV/AIDS (and there is of course a huge difference between those two stages), and Lyme is that one is viral and the other bacterial.


I have seen an influx of 'ads' claiming to have found the answer/cure, coming down the facebook pipeline making statements that Lyme suppresses the immune system, to which there are always a handful of us posting under comments that Lyme does NOT suppress it, it can weaken it, hide from it, but not suppress it.
Posted 10/24/2016 9:06 AM (GMT 0)
Bartonella can suppress via bone marrow infection platlet and wbc inhibition ..and since most people call msids just lyme ..then definition need to be clarified ..

Here is regular light field vid

https://youtu.be/-IaDTPfeDxE

see other threadnin microscopy. .or refer ti lymenet thread
Posted 10/24/2016 1:30 PM (GMT 0)
The immune suppression to the point spoken about on these threads does not happen to everyone. This is only a few that actually can't recover or can't recover completely.

There are many different "levels" of "disability"/dysfunction with these infections, and as Blue Lyme pointed out, many say Lyme, and mean everything that can come with it - bacterial, protozoa and viral components to our illness. Combine all these things, and some people end up finding out they have serious health issues with more than just the basic Lyme, Bart, Babs, RMSF, Ehrlichia, Anaplasmosis.

Everyone and their cousin on Facebook now claims to know how to heal Lyme completely. Most of that is based on one person's experience (which we know what works for one won't work for everyone), or is based on lab tests (and we know that the bacteria act VERY differently in the body than in the lab), or is pure hype. So do be sure you get details, and research things before assuming it works.
Posted 5/10/2017 1:16 AM (GMT 0)
IHL~ How are you doing now? Just was told I have 80% chance of glomulus mossea
Posted 5/10/2017 1:24 AM (GMT 0)
I wonder if there is possibly a way to contact IHL to see how treatment went.
Posted 5/10/2017 1:36 AM (GMT 0)
Ahhh the Lyme cryme stuff... I would love someone to be able to explain how OspA is a fungal antigen. I've debated Kathleen Dickenson on that with no good answer. Some of her documentary was legitimately interesting but things like that remove a whole lot of credibility. Anyways it seems oversimplified to me to say that OspA is the issue. OspA is a spirochetal protein that facilitates spirochete persistence hence chronic Lyme and not simply post sepsis syndrome.
Posted 5/10/2017 2:38 AM (GMT 0)
Okay, I can help explain.

Posy- I am still very sick. To make a long story short, it's just more of the same. Constant fluctuations, no real breakthroughs.

Psilociraptor- OspA is a fungal-like antigen because of what TLR manages it. Anything managed by TLR1/2 is fungal, and humans just can't take fungi. The structure of OspA is pam3cys, which in a nutshell simply equals permanent immune suppression. At the end of the day if you feel better and you still have immune tolerance, does it really matter? Only because there is always the potential to relapse, I suppose.

Everything that Kathleen says is bulletproof. A lot of people don't like her, but that doesn't change the fact that she's right about what she is telling us. We know that OspA causes post sepsis syndrome because of the failure of Lymerix. The Lymerix vaccine had OspA (I think maybe OspB too), and it gave people the same disease. There were no spirochetes, but they had the same exact disease as tick bite victims. I say victims because all lyme patients are victims of one of the largest crimes against humanity in history.

So if the protein could give people the same disease without whole spirochetes its telling us that it's a potent endotoxin. It's a triacylated lipoprotein, pam3cys. HIV patients have traces of exposure to pam3cys as well, so that tells us that it's a pretty big deal.
Posted 5/10/2017 2:44 AM (GMT 0)
Oh, the immune tolerance/cross tolerance to other TLR's is what make the disease chronic. So it's not just about spirochetes. It starts with them, yes. But killing them won't undo the damage to the immune system. Killing spirochetes won't un-transform your B cells. All of this OspA poison toxic blebbing leads to an AIDS/Lymphoma like outcome. AIDS stands for acquired immune deficiency, it's not synonymous to just HIV, there are over 300 types of AIDS. Our kind is mostly a iGg subclass 2 deficiency, while our total iGg tends to remain at low/normal levels.

I so wish that Kathleen (and my ILADS doctor) were wrong, but they aren't as far as I can tell. I tried for literally months to prove them wrong and I couldn't sad. I wish that ILADS talked more about this, I would've been able to make better informed decisions about my treatment had I fully understood this from the beginning. ILADS validates and I like them, but I did feel a little betrayed once I figured out what borrelia exactly did to the immune system.
Posted 5/10/2017 2:46 AM (GMT 0)
Here are some links:

lymecryme.worpress.com - This one is the easiest to understand

badlymeattitude.com - This one is the second easiest to understand

truthcures.org - This one has the charge sheets, which explains every single little detail of the disease and the crime.

crymedisease.wordpress.com - This one is Kathleen's blog, very interesting stuff on this one if you can read between the lines of the personality conflicts that people tend to have with her.
Posted 5/10/2017 3:43 AM (GMT 0)
made them clickable

IHL said...
Here are some links:

lymecryme.worpress.com - This one is the easiest to understand

badlymeattitude.com - This one is the second easiest to understand

truthcures.org - This one has the charge sheets, which explains every single little detail of the disease and the crime.

crymedisease.wordpress.com - This one is Kathleen's blog, very interesting stuff on this one if you can read between the lines of the personality conflicts that people tend to have with her.

Posted 5/10/2017 3:48 AM (GMT 0)
Thanks Astroman!
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