100% Convinced my CFS/Fibro is Mycoplasma infection based

[beatsmyth]

Tested positive for Mycoplasma and was given Cipro, got better that month, when the ABX were done, everything came back. Different Doctor (was told to go to a immunologist) was old and useless, but he put me on a different ABX, which made me better for 6 weeks, then when ABX course was done, right back to square one.

So now I'm on a special therapy that I researched for a few weeks that's based on a Dr. Brownstein out of Michigan that is based on Mycoplasma killers (oregano oil, Thyme oil), grapefruit seed extract, various others as well, and also Iodoral (with selenium and vit C) and 10,000 IU Vitamin D.

First time in 10+ years I've been doing good and have had energy (to varying degrees) all throughout the day, brainfog lifted, and other improvements. Brownstein does pulsed ABX as well for sometimes 6-18 months, but I'm not there yet. For right now, just tackling the mycoplasma with supplements for 6 months before I figure out how to get my shitty insurance and useless Doctors to help with the ABX (I dont work right now so am on the Gov's crappy insurance).

Anyhow, the Mycoplasma is known to attack the Myelin sheaths (the covering of your nerves) and is what causes my nerve pain, which has been horrendous for 10 years now, daily and have had to use painkillers to somewhat function. However in the last 2 months, I have only had a total of about 5 bad nerve paid days (out of 60 days is miraculous for me) and only used the painkilers on those 5 days.

So I really wanted to see if I can go 60 days of improvement before writing up on here. vinpocetine, l-theanine, intellect tree seeds, oregano and thyme oil to fight off mycoplasma, DIY Liposomal Vitmamin C + Apple Cider Vinegar mixed in water all help me tremendously along with Iodoral (with Selenium and Vit C). I am still experimenting with these and other supps to see if I can increase my amount of energy and health and so far am better than I have been in 20 years. Also do Tai Chi/Qi Gong breathing which really helps. Also I cap my own turmeric powder with pepper, Sage tea has been a huge nerve pain reliever and also fights myco, and Acetyl-l-carnatine + Alpha lipoic acid 50/50 capped also help big time with nerve pain

 

[Wayne]

Tested positive for Mycoplasma and was given Cipro

Congratulations @beatsmyth on your improvements! -- It appears you've put fluoroquinolone antibiotics (Cipro) behind, you. But just wanted to mention that these Abx can be very dangerous, and a number of people have reported their CFS began with using them. Unlike regular antibiotics which target the cell walls of bacteria, fluoroquinolones target the DNA.

As you can imagine, they don't discriminate between bacterial DNA, and the DNA in every other cell in the body. It appears that damage is always cumulative as well, so even though somebody has taken a round and did OK with them, it doesn't mean further rounds won't harm you. Here's a LINK to a dramatic and troubling story by a healthy 30-year old man whose body was destroyed by Cipro.

All the Best...

 

[Hip]

Dr A Martin Lerner's treatment of Mycoplasma pneumoniae infection in his ME/CFS patients involves intravenous doxycycline 150 mg for six weeks, followed by oral doxycycline 100 to 150 mg twice daily or moxifloxacin 400 mg once daily for three months. 1

 

[gbells]

Please keep posting your progress. Since you didn't list typical mycoplasma symptoms it would surprise me if this is the primary problem. Also, oregano oil is a strong anti-oxidant so this could be masking symptoms. The web says azithromycin is effective against mycoplasma.

 

[beatsmyth]

Dr A Martin Lerner's treatment of Mycoplasma pneumoniae infection in his ME/CFS patients involves intravenous doxycycline 150 mg for six weeks, followed by oral doxycycline 100 to 150 mg twice daily or moxifloxacin 400 mg once daily for three months. 1

Unfortunately my insurance is shit and none of my Doctors are CFS/Fibro Doctors, pretty much useless, barely will prescribe anything, and if they do usually the insirance wont cover. I have no idea how I can even go about figuring out how to try this protocol, however I know I would try anything I can to make this happen

 

[beatsmyth]

@Wayne, yeah I found out about the Cipro side effects and nightmares after I already did my round of it. I was lucky I didnt have any bad side effects, and I will never go that route again. At the time I was given that, I also caught the flu that was going around but it wouldntt leave me, I had 2 moths of it, while everyone else was 1 week. The Cipro knocked everything out and was doing really well afterwards until the Mycoplasma came back

 

[Hip]

I have no idea how I can even go about figuring out how to try this protocol

A lot of ME/CFS patients end up buying cheap generic drugs from prescription-free pharmacies abroad (such as those listed in this post).

 

[beatsmyth]

Please keep posting your progress. Since you didn't list typical mycoplasma symptoms it would surprise me if this is the primary problem. Also, oregano oil is a strong anti-oxidant so this could be masking symptoms. The web says azithromycin is effective against mycoplasma.

I did have mycoplasma symptoms but they were always gradual. It was never all at once but little by little over years I progressed to state to where I couldnt work and had no insurance to get help, and every Doctor I went to did the standard tests and everything always came back fine. Spent years on this forum as well lurking and making notes of things to test for and eventually came back pos with Myco, but also EBV titers and HHV6. That's when I remembered that my course of cipro made me better and when my Immunologist gave me Minocycline for a month I got better as well, but after both times, it came back. So now I know I have to fight this with supps or ABX or both for a long time, and also possibly pulsed therpay of different ABX (Some Docs recommend this) in order to fight it off

 

[beatsmyth]

A lot of ME/CFS patients end up buying cheap generic drugs from prescription-free pharmacies abroad (such as those listed in this post).

I have done this as well, but intravenous doxycycline 150 mg for six weeks isnt something I could DIY

 

[Hip]

I have done this as well, but intravenous doxycycline 150 mg for six weeks isnt something I could DIY

The oral bioavailability of doxycycline is very high (93%), so I am not really sure if IV doxy really provides much advantage over oral. So I imagine you could replace those first six weeks with doxycycline 100 to 150 mg twice daily, and then complete another 3 months of the same.

 

[beatsmyth]

The oral bioavailability of doxycycline is very high (93%).

Wow, did not know that. Yes that does change everything and I will definitely reconsider this as an option. In my notes I have saved on this, Dr. Garth Nicolson, PhD http://www.immed.org/reachus.htm
Uses pulse therapy 6 - 12 months (6 week on , 2 weeks off) (Doxycycline 6 months to a year it could take to manage)

However in another set of notes I have printed out (cant find them right now, my place is still a mess) I have another Doctor (I believe its Brownstein out of Michigan) says you absolutely have to pulse with different ABX because the Mycoplasma gets used to whatever version you are taking.

 

[JES]

Can you provide a reference for the claim that mycoplasma attacks the myelin sheaths? I have small fiber neuropathy, but the small nerve fibers actually don't come with a myelin sheath, so the process of small fiber neuropathy is due to something else. Only the larger nerves come with myelin and when something attacks those nerves, usually it starts to affect your motor skills, which small fiber neuropathy doesn't do.

I coincidentally also was diagnosed with a mycoplasma infection years ago, but I got no improvement from either doxycycline or macrolides. My antibody levels were moderately high, but I later learned that this does not necessary imply active infection. I think there may be hundreds of different chronic infections that some of us harbor and mycoplasma is just one of them. It is well known that antibiotics help a subset of CFS/ME patients, but the reason could be any bacteria, because doxycycline is broad spectrum and destroys lots of other bacteria as well. A third way in which antibiotics could reduce nerve pain is the anti-inflammatory effect that many of them have, especially doxycycline.

 

[beatsmyth]

Can you provide a reference for the claim that mycoplasma attacks the myelin sheaths? .

https://www.sciencedaily.com/releases/2016/10/161003092441.htm

From the article:

"The bacterium Mycoplasma pneumoniae has been under suspicion for quite a while. Now, researchers at the University of Zurich, the University Children's Hospital Zurich, and the Erasmus University in Rotterdam have proved without a doubt that it is the culprit. In fact, mycoplasma is not only responsible for respiratory tract infections such as pneumonia in children and adults, it can also trigger Guillain-Barré syndrome (GBS) in infected individuals. The scientists have succeeded for the first time in culturing mycoplasma from a GBS patient in a laboratory setting.

Antibodies attack not only the bacteria but also the nerve pathways

The reason for this is the similarity between structures on the surface of the bacteria and the body's own nerve-sheath structures (molecular mimicry). This leads to an immune reaction, which attacks both the mycoplasma and the surrounding myelin sheath of nerve pathways. "

So in my case, I literally have always felt like whatever was wrong with me, was literally sitting in my nerves or attacking my nerves in some way and causing pain in this manner. When I am on ABX, or on my current supplements regimen to attck the myco," I am viritually pain free (albeit for a few odd bad days while I am adjusting to the increase of (for one example thyme oil). Basically the above article is exactly how I feel and eventually I tested pos for Myco as well. Basically my neuropathy is body wide

 

[Sidny]

Its also implicated in cancer and we have our government to thank for making at least the fermentans strain in a lab.

"Mycoplasma promotes malignant transformation in vivo, and its DnaK, a bacterial chaperone protein, has broad oncogenic properties.

We provide evidence here that (i) a strain of mycoplasma promotes lymphomagenesis in an in vivo mouse model; (ii) a bacterial chaperone protein, DnaK, is likely implicated in the transformation process and resistance to anticancer drugs by interfering with important pathways related to both DNA-damage control/repair and cell-cycle/apoptosis; and (iii) a very low copy number of DNA sequences of mycoplasma DnaK were found in some tumors of the infected mice. Other tumor-associated bacteria carry a similar DnaK protein. Our data suggest a common mechanism whereby bacteria can be involved in cellular transformation and resistance to anticancer drugs by a hit-and-hide/run mechanism.”

https://www.pnas.org/content/115/51/E12005

 

[Wayne]

I think there may be hundreds of different chronic infections that some of us harbor and mycoplasma is just one of them.

Couldn't agree with you more on this @JES. I've read that some people who research Lyme and other tickborne diseases hypotheize there may be as many as 300 infections that nobody has yet identified. And then you add in all kinds of oral and other focal infections, and it seems pretty clear current understanding of chronic infections is pretty much in its infancy.

 

[prioris]

besides the fact that an antibiotic could devastate some people, the main problem is trying to decide if the side effects is a herxheimer reaction or damaging ones body and should be stopped ... also these are broad spectrum and can wipe out your immune system

Top natural antibiotics out there ...
Wild oregano extract p73
ApoLactoferrin (lactoferrin is for people who are deficient in iron)
Monolaurin pellets
SilverBiotics (used by the military)

I have used a few antibiotics in past but they aren't broad spectrum and I know they have minimal side effects on me.;;; i feel positive effects pretty quick
lederle minocin cured my fms ... has some unknown action on immune system
amoxicillin to use for any emergency dental pain

i will not put myself thru hell hoping some negative reaction is some herxheimer
i remember forums 15-20 years ago people thinking it could be mycoplasm
Lerner had me as slightly positive for mycoplasm
i tried dabbling in just a few other natural remedies
I tried Artemisia ... it has anti mycoplasm properties

i think most people will survive testing them short term but a few unlucky ones can be absolutely destroyed by them. Ciproflaxin is the most dangerous one. I'd research natural ones ... i think there are more out there

Some antibiotics only work orally and not intravenously. That means the active component is some kind of metabolites derived from processes during digestion

 

[beatsmyth]

@Sidny
yeah i read all that and it's horrible. Not much I can do really, and as many times as I wanted to already end my life instead of being in pain and to tired to live, I've at least found some health and hope and its all I can do to go forward and continue to fight. When it is time to go, honestly it will be with a smile and without looking back after the B.S. I've gone through now for almost 20 years

 

[Sidny]

@beatsmyth
I admire your attitude and I’m glad those treatments have helped improve your health after so much suffering. Thank you for sharing what’s worked

 

[beatsmyth]

@Sidny
No problem friend! Thanks for chiming in on the thread and I hope you and everyone else here gets the help and relief they need from whatever it is that ails us

 

[jesse's mom]

All the best on your journey @beatsmyth It is certainly a ride!

I think the problems are both bacterial and viral. I like the natural germ killers are the way to go for me. The ways our bodies use food is key as well. Healing my gut and staying off antibiotics is giving my my life back, little by little.

Believe it or not adding raw unfiltered honey helps me with pain, sleep and brain fog. It is a natural antiviral.

My grandfather was a dentist and when we got sick he mixed honey, lemon, and a shot of good bourbon, and gave it to us. He was a believer in honey. He only prescribed antibiotics in life or death situations.