LymeNet Flash: Others with Mycoplasma?

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Posted by jocus20 (Member # 11576) on :

Im looking to find others with Mycoplasma. Basically i want to find out who else has it, how long, and if you have had a struggle in getting well?

I have Mycoplasma and my symptoms are primarily neurological. My worst symptoms are brain fog(depersonalization), vision and fatigue.

Antibiotics have helped me some but ive never found anything that i continually progress on nor anything that helps the neurological stuff. It seems as tho some symptoms will improve and then i will plateau.

Does anyone else with Mycoplasma have this same sort of thing happen?

I am now trying some herbal stuff and alternative medicine but the only thing that helps me to feel semi-okay is antibiotics. When i go off of them old symptoms come right back and current ones worsen.

Soon i will be starting removing silver fillings and chelating metals in hopes that it will help some.

Has anyone found out why us people with Mycoplasma struggle to get well?

Is anyone doing anything different besides abx for mycoplasma and has it helped?

Im really just frustrated and want my life back. Any one with any insight please respond. Thanks

Joe

[ 03. September 2007, 12:40 AM: Message edited by: jocus20 ]

Posted by Carol in PA (Member # 5338) on :

Joe,
If you click on "search," right below the "post reply" button, you can do a LymeNet search for mycoplasma.

This will give you a list of threads that you can read, and you will find information from others who have it.

Hope this helps.
Carol

Posted by david1097 (Member # 3662) on :

I am/was PCR positive for Mycoplasma fermentans... plus some other stuff.

I also had/have the symptoms you mention, however I don't necessarily entirely associate them with the progress of mycoplasma treatment since some of them improved (and later worse then better) with treatment of the other infections.

Finding any definative infomation on M. fermentans is hard... there is not much out there except for perhaps the more recent information on gulf war syndrome.

As starters, you need to answer a few questions...

Do you also have Lyme?
Any other co-infections besides mycoplasma?
Which mycoplasma do you have?
Was it a PCR based diagnosis?
How long have you been under treatment?
How long have you had Lyme?
Are the symptoms constant or do they wax and wain, and if so how often?

Let me know on the above and we can compare histories.

Posted by valymemom (Member # 7076) on :

Joe

I found this info about mycoplasma infections in my New Haven symposium book. Dr. H. presented this and maybe your llmd follows this same protocol.

Mycoplasma/chlamydia: 2 intracellular abx (tetra + macrolide/or ketolide, tetra + quinolone, tetra + rifampin)

You probably have been on these in combination. Of course, treatment is more difficult because "mycoplasmas evade the immune system and synergistic effects with other infectious agents are known to occur."

Posted by klcst (Member # 3427) on :

What we all suffer from is rarely just about Lyme disease. Carriers carry a plethora of infections, including multiple Mycoplasma infections. Mycoplasma avoid the immune system and testing is okay, but not great for them. There are no two cases alike for Lyme and Mycoplasma infections. When you add in other infections, our genetics, our immune systems, then you begin to understand why treatment is a challenge.
A great site to learn more about Mycoplasma infections, testing, and treatment go to Garth Nicholson's www.immed.org

Posted by jocus20 (Member # 11576) on :

Thanks for your responses.

Dave,
To be honest with you im not sure if i do actually have lyme. i have never tested cdc positive and have only had band 41 present most of the time

I only test positive for mycoplasma pretty much everytime. I think it has been pcr and the only one i have been tested for is Pnumonia. So i know that is a contributer to my ilnness but im not sure if its the whole issue.

I have been in treatment for around 2 years on and off. Ive tried a number of different abx and did three months of IV roc. Noting has seemed to help signifigantly.

I have had symptoms everyday for almost 3 yrs now. The brain fog and vision is endless. All my symptoms including those wax and wane.

I am now looking into removing amalgams and detoxing metals to see if that may help or be part of the solution.

Thanks again.

Joe

Posted by david1097 (Member # 3662) on :

Here is a bit of background that might help you sort through whats going on. I no one has asked any of the questions below, they should have.

I can give you some general background information but I can't provide medical advice. However you might be able to use a bit of the background information to help sort out what is going on with the help of your Dr(s).

How often do the symptoms come and go? This is important as differnt diseases have different patterns. Is it every day, week, month or several months that the syntoms re-appear. How long do they stay.

Are there any opther sypmtoms beyond the brain related stuff, Ie do you have any joint pains, heart problems, non male pattern hair loss etc.
Any odd lesions, cold sores etc.

Did you have any MRI's done while the symptoms were present. Did anything show up?

Any heart problem? Any history of heart issues in your family?

I would think with that form of myco plasma you would have some chest related issues, ie cough etc. The mycoplasma that you have is recognized as being fairly common.

Some people will disagree with me on this but with no reponse from aggresive use of antibiotics, If I were in your place I would broaden my scope of possible ailments, with no response, lyme (and mycoplasma) definately moves lower down the list, however mycoplasma can persist, particuallry if not treated with a combination intercellular.

Be aware that there are lots of possible diseases that may cause the symptoms you mention, especially if they are strictly manifested as brain related.

There are even a few remitting/relapsing diseases that are genetically induced. The problem is sifting through the history and symptoms to come up with a prioritized list.

Many Dr's go wong by not including Lyme on the list at all... it should stay on the list until something else is found, if for no other reason that it can manifest as such a wide range of other diseases. Still with no antibiotic response, some other things would normally be considered more likely.

Here are a few that immediatly come to mind that are non bacterial.

Fifths disease ( in adults can cause neuro problems... often overlooked)

Herpes(this to can cause severe neruo problems)

Babesia or other protozoals (presumably checked as art of a lyme workup but should not be overlooked)

Also have you ever had a short course of steriods (ie prednisone) and if so, what happened?

Posted by jocus20 (Member # 11576) on :

Hey Dave,

I know you probably think they havent but infact they have. I really wasnt asking for people to help me with diagnosis. i was just asking why most of us with mycoplasma have struggles in getting well and if there was alternatives to the antibiotics.

But to answer some of your question. My symptoms are 24/7. they do wax and wane but are always constant.

On top of my worst symptoms of the brain fog and vision i have many others that come and go. I did have joint pain and heart problems until i started the antibiotics. Those symptoms resolved for the most part. I do have neck stiffness and pain, headaches, weakness etc. typical lyme symptoms.

It took me almost a year to get my lyme disgnosis and i had all the proper testing inlcuding mris etc.

I think that most people think mycoplasma is just a co-infection and does not cause severe problems. Mycoplasma causes the same exact symptoms as lyme and takes months to years of abx to erradicate. http://shasta.com/cybermom/myco%20tx%20sugg.htm. Mycoplasma is thought to be the cause of diseases such as CFS, MS etc.

Regardless of this being the whole picture of why i am ill, it is a major player. I never said i didnt have any releif with antibiotics.

If you dident read my first post thoroughly, i said that abx were the only thing that have helped me to feel better. They just didnt help as much as i would have like with my neuro stuff.

I probably should have been more thorough before. I am sorry u misunderstood me. Thanks for the info tho.

Oh and to answer the steroids question. Yes, i got steroids and they made me iller than ever.

Joe

Posted by brf (Member # 8748) on :

Hi Joe,

My son and I both have mycoplasma p. as well as Lyme and been on antibiotics for extended periods of time.

I would love to know the same thing as you. Are there any effective herbal treatment plans?

bf

Posted by hardynaka (Member # 8099) on :

Hi, I got rid of mine but it was only 'acute' mycoplasma. I got rid basically with herbs (not sure doxy gets myco, as I got 2 weeks of doxy after tick bite)

If you're interested, my protocol is in B's forum.

SElma

Posted by hardynaka (Member # 8099) on :

Here is the copy-paste of it:
-------------------------
It SEEMS it has worked for my acute mycoplasma infection. It was first time for
me to have got mycoplasma, I was infected on May 12, it was testing
until a few days ago, and now it's not testing anymore. I dont' know
if I'm really rid of it, but I'll write my protocol down here because
after I will forget!

[so far, it didn't come back]

As Buhner doesn't speak about it and I believe it's a widespread tick
coinfection, here is my experimental protocol.

Note it seemed to
have worked for me (only), and it was merely an acute infection, not
chronic.

- Frozen garlic: 2-3 capsules a day, after eating.

- Gervao (from rain-tree): 3 00 size capsules/ day, with B's herbs.

- propolis tincture: about 10 drops/ day

- oregano oil a bit diluted with sesame oil to rub-on belly area (GI
tract was where my mycoplasma was testing stronger): 2x day, far away
from homeopathics.

- tick homeopathic 'nosode', home-made with the tick that bit me
(started with potency 20 C, if I remember well, and slowly increased,
I'm now on potency 62C), 2 times a day a little sip, on empty stomach.

- Ledum 30 C: 6 globules (small ones)/ every other day. It tests very
good against mycoplasma, in my case better than the 200C usually used
in lyme disease.

- St. John's wort capsules (oil and powder, I use both). 2 x day.

- Forsythia powder (00 capsules): 2 a day (I added that in the end)

- KMT program 5 (I did a few times, specially with pads where it was
testing: brain and GI tract area).

Parallel to that I was on B's core protocol including astragalus
(excluding sarsaparila though) and babesia treatment.

Core protocol: what tests to help mycoplasma are Japanese knotweed
and cats claw only.

All these tested good against mycoplasma for me. I know each person
is different, so...

Gervao was testing amazingly good until
yesterday. Now that mycoplasma is down, it's not testing for me
anymore.

Selma

Posted by Paula Carnes (Member # 10912) on :

Mycoplasma is another player in the mix of infections. Doxycycline for a year will not touch it. Cipro might, but cipro might kill your tendons and your CNS first. Based on my years of experience you might improve on about 2-3 years of Zithromax at 500 mg a day. This is a fairly safe antibiotic. CyberSharon and myself and others also have EBV. She is doing fairly well on Valtrex and Valcyte, but you are going to have tough time getting an MD to prescribe Valcyte. And then there is the likelihood that you have babesia, borrelia etc.

But all I can add is - forget doxycycline and forget treatment for a year "off and on." IF you can find some antibiotic that works for awhile - take this antibiotic for a few years, not weeks. Do not try this approach with any quinolones. They are far too dangerous.

Sorry to throw all this out without documentation, but I used to run the email list that Dr. Garth Nicolson contributed to re mycoplasma, in particular m. fermentans and a couple of others that are deadly serious. Hopefully some ideas I have shared will trigger some hope for you to find the antibiotic that seems to work in your case.

I might add that my son has Lyme and does well on high doses of garlic and a Chinese medication called circulation P. What can I say? Our scientists need to do their homework on us, don't they?

Paula Carnes

Posted by northstar (Member # 7911) on :

Paula,
Is the mycoplasma protocol like the Wheldon (sp?) protocol = zith, mino, flagyl?

Is the forum still accessible? (even though not in use).

North.

Posted by Carol in PA (Member # 5338) on :

quote:
Originally posted by Paula Carnes:
I might add that my son has Lyme and does well on high doses of garlic and a Chinese medication called circulation P.

Hmm, I still have some "Circulation P" left from when I tried Zhang's Protocol.
Maybe I should try it again.

Carol

Posted by kelmo (Member # 8797) on :

I get a mycoplasma digest from some yahoo group. I think if you go there, you'll find support.

My daughter was diagnosed first with myco pneumonia. After that, bartonella and babesia.

Her breathing has cleared up, but it took a couple of years.

She also has EBV and Parvo (fifths disease as a child at the same time I had Parvo-virus as an adult).

You get a soup of stuff when you are infected and need to consider all their role in your illness.

Posted by aklnwlf (Member # 5960) on :

I have Mycoplasma too. I don't know which one but when they treated me for Lyme they said it would take care of the Mycoplasma too.

Boy, I hope they're right!

I have mostly neurological symptoms and some breathing problems. Just run out of air when singing or talking.

Course, that might not be a bad thing. LOL.

Posted by Kerryblue (Member # 4077) on :

[hi]

From 15+ research, working 3 yrs. Pain Clinic, & with 2 med. prof., What we call the Lyme Guru. Was there when she 1st spotted the mutation,form change, needing no host with Very Expensive Fluoroscope/newest 1 1st.
People went nuts I was with patients did not see, until published.DANG/Iwas right there.

To answer your question??
90% people test positive for EBV.
I look at the mycoplasma, as root of tree, let out yrs. ago test studies. Punta Gorda Fl. in 50`s documented(well). Also in Canada, just couple from whistle blowers.
As Lyme & being let out for Bioterrorism,& Cholera.
All backfired, why we have had to fight CDC/Govt. etc.
Imagine the law suits, now has become like cockroach spraying may kill you but not them.
Look at all this as part of puzzle big pic.

BTW/ Had been awarded 2 Scholarships, too ill to travel to Calif. Hate that never wanted reward, but to dine with all top docs. in world on Queen Mary/Calif. To let you know this is weeding out 50% of info. While getting 50% that is close or right.Just for you to know what all this appears to be leading to.....THE dreaded Myco.

Like anything all diff. phases from light to severe.
By now after being let out, has become as cockroach/stealth & hard to kill.

For us with high EBV/ had all 8 bans High.
Positive Eliza/WB/ & antibodies.

We need to put the EBV/CMV/Mycoplasma/ALL when active, can do lots damage including Uveitis, 1 leading cause blindness,(I had big time) from active CMV. Not just eyes, all over.Uveitis look up says if caused by Lyme/CMV

By now being tracked back to 1896. Has become stealth.
Govt keeps saying they are"PREPARING", working on stealth viral/bacterial.
It is here & they know it very well...`````````````
IMHO/ as we all carry cancer cells/staph/strep on our bodies.
Probably by now IF BIT BY ANYTHING,carrier including mosquitos+++

Just as cancer needs immune system when under stress,severe illness, even bad flu.
It can find way in to activate itself. Being hides itself very well. Rarely tested for early stages, unless have smart duck.

Once as cancer finds opening.
I bet if 1000 people same time well or sick, good chance test positive.
Most as positive EBV`s 90% show.
I think same with this.
It is tuff being viral in nature.
Ducks not connecting dots.
Think with all info be lot more interest.
Unfortunately all tooooooo many forget hypocratic Oath.

Myco being the root, best layman way to explain, branch off to maybe MS/Parkinsons/Tick bit Lyme,
Why some people have car accident & wake up with this. Or extreme stree.
Just lay in wait to jump in as cancer cells.
Mom always said her cancer was do to much stress at time.
She also had many signs, sleep,RLS,neuro,neck prob,heart etc.

Beyond that did best to explain. This is something from trigger of weakened immune system.

I do not have all the answers.
People start connect dots.
Why did M Fox have Lyme, then branch tree where could get in....It took off, with all his money,best Dr.s still no answers to why told to him.

I wish You only the best with us with severe myco. is tuff, same as CMV.

Know Lyme has long way to go take bets, many co-infect. Why many NO Matter what under best treatment unable to get well. Imagine they have others to the tree branch not found..

YOU ARE FAR FROM ALONE.
KEEP UP THE FIGHT.....Know myself how tuff it is.
I am not on treatment my HMO, all can afford, after spending 100,000`s thousand in begin NOT getting well. Going in circles.... [bonk]

KEEP FAITH? IF bad tuff to fight if can, beyond our own health care in our own hands.

[group hug]

Kerry/ From fellow sufferer of long with millions

Posted by jocus20 (Member # 11576) on :

Thanks all for your responses.

I was curious about this all becuase i noticed many people with mycoplasma struggle to get well. It was even in something i read in the Hope to Heal conference notes.

Im really not sure why that is and its tough finding an answer.

I guess its possible that people with mycoplasma have worse immunse systems or there are more factors or even just the mycoplasma being the bacteria it is.

I think some people think that Mycoplasma pnumonia and other mycoplasmas cause just some respiratory symptoms and thats all.

Mycoplasma does way more than cause some respiratory problems. It can enter the nervous sytems and tissues and wreak havoc on the body. It takes very very long to get rid of.

Well, thanks again for the responses. hopefully more to come

Joe

Posted by EyeBob (Member # 12572) on :

Joe, good post.

Interestingly mycoplasma (as I understand it) has been implicated in RA, scleroderma, Lupus, etc. which is why many of those people are now treated with minocycline.

rheumaticsupport.net and roadback.org are both good sites for ABX protocol for these problems.

BT

Posted by Robin123 (Member # 9197) on :

I have read that clindamycin is a good antibiotic for mycoplasma.

I had a phenomenal response to clindamycin last year -- I took 150mg 4x/day -- symptoms went straight down and I herxed.

If I also have mycoplasma, that might explain why I had such a great response to clinda.

I have never been tested for mycoplasma.

Anyone else who knows they have mycoplasma ever try clindamycin? If so, what happened?

Posted by Kerryblue (Member # 4077) on :

Hi, just lost letter about RA. links & myco. From true stories.
Will do when I can again..
Somewhat interesting showing relationships there of. [group hug]

Kerry

Posted by CherylSue (Member # 13077) on :

old, but interesting info