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Is 'it' REALLY Lyme disease for the 'long-timers'???

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Posted 8/7/2018 4:17 PM (GMT -8)
1st Id like to say, so that noone mis-interprets me; that Chronic Lyme disease IS REAL....

Ive been reading peoples experiences here, and Im hearing that 1, peeps either caugjt the illness fairly soon, OR 2, they were mis-diagnosed(or not at all) for a long time...hence what Ive referred to as the 'long-timers'...

So, my post here is my take on what Im thinking the illness should really be termed for the 'long-timers', as simply the chronically ill. OR, I like DR. Horowitz's term, M.S.I.D.'s. Thats the Most accurate, becausebfor us 'long-timers', its not just Lyme.

For ME, Lyme is the LEAST of my problems. Its the ONE infection that's submitted, forced into hybernation(if you will).
I remain chronically ill because of the mycoplasma that teams upw/the HHV6. I have an AIDS like illness. Oh, and i have 2 variences of that darned gene mutation( cannot remember its acronym). Ive been sick off&on my entire life!!!

So, do I belong here on this Lyme forum? Is there one for M.S.I.D.'s? Does it matter? Should Lyme disease be renamed, or should I just view it as a broad term, VS specifically referring to Borrellia?

What say you???

Post Edited (mcspike) : 8/7/2018 9:13:23 PM (GMT-6)

Posted 8/7/2018 4:35 PM (GMT -8)
How do you know you have a mutated mycoplasma issue? I've never heard of that.
Posted 8/7/2018 7:04 PM (GMT -8)
My point is whether or not there should be another title for chronic Lyme....

Ive had labs specific for mycoplasma.

The mycoplasma research has been done in the IMMED lab> founded by Dr. Garth Nicholsen. Its the nature of the fermentans strain. Dr. Garth was looking for the cause of the Gulf War syndrome, after his daughter fell ill. You can view his seminars on youtube, explaining the microbiology of mycoplasma and viruses. Another great resource is the HHV6 foundation.

You may have never heard of it> that doesnt mean its not truth-right? Ive heard this from SO many, "Ive never heard of Lymedisease"!!!

Post Edited (mcspike) : 8/7/2018 9:15:56 PM (GMT-6)

Posted 8/8/2018 5:21 AM (GMT -8)
From my understanding, Lyme has turned into a blanket term for borrelia and/or its coinfections. Which really aren't coinfections. They are just infections.

For me, I am certain I have been harboring certain viruses and infections that I have acquired throughout my life. But the tick bite I received 2 years ago made them acute. The great activator. The tick was like the rebel forces traveling to Endor and destroying the Imperial base there in order to kill the force field around the Death Star. However, I don't feel I'm the Death Star. But you catch my drift.
Posted 8/8/2018 5:44 AM (GMT -8)
upvote for Hoagie's response.

I have often wondered if using the term Borreliosis instead of Lyme would be better for us. Not sure.

I do think there would be benefit if the term MSIDS would catch on. like HIV ~ AIDS Lyme ~ MSIDS.
Posted 8/8/2018 5:47 AM (GMT -8)
Chronic lyme is kind of a blanket statement, word play sometimes - which is why some claim its non existance. Some still have tick infection, some have the results of what it did.

What Im getting at here is there can be a point where its no longer lyme, but something else by how it change your body.

This may upset some newbies. We dont always want to see the truth. But remember- You are still better off than those 6ft under.

Post Edited (astroman) : 8/8/2018 2:22:42 PM (GMT-6)

Posted 8/8/2018 5:50 AM (GMT -8)
Multiple infections are the hallmark of immune dysfunction. Most with chronic Lyme and also CIRS with or without Lyme have multiple infections.

Apparently not all doctors test for these things. The functional MD who diagnosed me with CIRS tested me at baseline for mycoplasma pneumonia, chlamydia pneumonia, HHV6, parvovirus, CMV, EBV. I had unusually high IGG titers for most and IGM titers for chlamydia pneumonia.

From my understanding, it is chronic immune dysfunction that causes titers to be high. Any number of things can trigger immune dysfunction that becomes chronic when it gets stuck in gear. Exposure to mold and other biotoxins can overload or supress immune function.
Exposure to water damaged buildings also involves exposure to a toxic soup of fungi, bacteria, microbial VOCs, and more. Borreliosis and bartonellosis are immune suppressive pathogens that may also produce biotoxins.
Posted 8/8/2018 11:41 AM (GMT -8)
Dr M, the bart guy who I'm seeing now, describes it as an individual host response disease. He says that in those who go chronic, it's due to individual genetic and environmental factors such as mast cell activation, adrenal insufficiency, GSTP & GSTM mutations, methylation etc.. and any other unique offenders that each particular person may be dealing with
Posted 8/8/2018 12:01 PM (GMT -8)
I think bart is behind most of the long term issues
Posted 8/8/2018 1:18 PM (GMT -8)

dbwilco said...
I think bart is behind most of the long term issues

At this point, I have been thinking along the same lines.

I personally suspect that most people with CIRS have either undiagnosed Lyme and/or bartonella. I feel like there is just something deeply insidious about bartonella. I'm 48 and had mild symptoms for a lifetime before it caused sudden onset of a host of symptoms. Like it was slowly dismantling my immune, digestive, and endocrine systems beneath the surface before it sucked me down and knocked me over.

I remember feeling unsettled for 3-4 years before the last big wave came. I could tell something was wrong with my immune system. I was getting more frequent "colds" that didn't feel like or follow the pattern of colds I'd had in the past.

My gut feeling from my own life history and experience is that bartonella is what made me susceptible to mold and chemicals and caused the initial immune suppression. I have the CIRS genetic susceptibility to multiple biotoxins. I'm not aware that any research has identified susceptibility specifically to bartonella or that bartonella produces biotoxins, but those things may be issues yet to be dicovered. I also have the genetic susceptibilty to Borrelia biotoxins, but my symptoms all feel more like bartonella to me.
Posted 8/8/2018 2:33 PM (GMT -8)

dbwilco said...
I think bart is behind most of the long term issues

Not the first time I've heard this theory
Posted 8/8/2018 3:20 PM (GMT -8)

WalkingbyFaith said...

I'm 48 and had mild symptoms for a lifetime before it caused sudden onset of a host of symptoms. Like it was slowly dismantling my immune, digestive, and endocrine systems beneath the surface before it sucked me down and knocked me over.

I remember feeling unsettled for 3-4 years before the last big wave came. I could tell something was wrong with my immune system.

My experience is exactly the same. There was always something different about me but i just pushed through it. Then, for a couple years before getting sick-sick i was definitely sick but still ignored it and found ways to trudge through (lots of caffeine and adderall). But eventually, the big crash came
Posted 8/8/2018 3:27 PM (GMT -8)
Intersting thoughts on Bartonella...may I ask...

Of all y'all who suspect bart for the main cause of your chronic illness; have you been tested for the HHV6 virus AND mycoplasma fermentans?

I ask because MY chronic immune disfuntion is caused by mycoplasma teamed up w/HHV6 & other viruses.

Just please consider the differences in/of the paghogens. Bacteria seek to leech off the body to survive>theyre a living organism that CAN die. Virals, on the other hand are PROGRAMED to destroy. Theres no ABX to eradicate virals.

Im tellin' ya...its the 'human' herpes viruses such as EBV, CMV, HHV6, Hsv1 &2, etc thats preventing Lyme victims from fully recovering!!!!

Virals studies is my thing!!!
Posted 8/8/2018 3:29 PM (GMT -8)

Aerose91 said...

WalkingbyFaith said...

I'm 48 and had mild symptoms for a lifetime before it caused sudden onset of a host of symptoms. Like it was slowly dismantling my immune, digestive, and endocrine systems beneath the surface before it sucked me down and knocked me over.

I remember feeling unsettled for 3-4 years before the last big wave came. I could tell something was wrong with my immune system.

My experience is exactly the same. There was always something different about my body but i just pushed through it. Then, for a couple years before getting sick-sick i was definitely sick but still ignored it and found ways to trudge through (lots of caffeine and adderall). But eventually, the big crash came

100% mirrors my own experience. My body felt off for years, slowly degrading but still high-functioning, I grinded through everything but it didn't seem normal how hard I had to work to get anything done. I didn't know any different, so I tried to reassure myself, I tried to chalk it up to my body's particular make-up. Like you Aerose, I pushed through by the skin of my teeth, largely fueled by gargantuan amounts of coffee. But I sensed it wasn't sustainable.

Throughout those years I had an impending sense of doom. I couldn't put my finger on why, but my gut knew something was wrong even if my mind couldn't comprehend the situation. Then I got flu/mono and my body imploded, the underlying symptoms exploded. In hindsight I think bartonella was the key infection for me and I'm pretty certain I've had it since I was a young kid.

Post Edited (sebreg) : 8/8/2018 5:33:33 PM (GMT-6)

Posted 8/8/2018 5:12 PM (GMT -8)

sebreg said...

Aerose91 said...

WalkingbyFaith said...

I'm 48 and had mild symptoms for a lifetime before it caused sudden onset of a host of symptoms. Like it was slowly dismantling my immune, digestive, and endocrine systems beneath the surface before it sucked me down and knocked me over.

I remember feeling unsettled for 3-4 years before the last big wave came. I could tell something was wrong with my immune system.

My experience is exactly the same. There was always something different about my body but i just pushed through it. Then, for a couple years before getting sick-sick i was definitely sick but still ignored it and found ways to trudge through (lots of caffeine and adderall). But eventually, the big crash came

100% mirrors my own experience. My body felt off for years, slowly degrading but still high-functioning, I grinded through everything but it didn't seem normal how hard I had to work to get anything done. I didn't know any different, so I tried to reassure myself, I tried to chalk it up to my body's particular make-up. Like you Aerose, I pushed through by the skin of my teeth, largely fueled by gargantuan amounts of coffee. But I sensed it wasn't sustainable.

Throughout those years I had an impending sense of doom. I couldn't put my finger on why, but my gut knew something was wrong even if my mind couldn't comprehend the situation. Then I got flu/mono and my body imploded, the underlying symptoms exploded. In hindsight I think bartonella was the key infection for me and I'm pretty certain I've had it since I was a young kid.

I, too, didn't get sick directly after the bite. I believe it was bubbling up in me for years. I likely got bart as a kid because we had cats that had fleas. It took until 26 for my body to finally say "F. You"
Posted 8/8/2018 5:16 PM (GMT -8)

mcspike said...
Intersting thoughts on Bartonella...may I ask...

Of all y'all who suspect bart for the main cause of your chronic illness; have you been tested for the HHV6 virus AND mycoplasma fermentans?

I ask because MY chronic immune disfuntion is caused by mycoplasma teamed up w/HHV6 & other viruses.

Just please consider the differences in/of the paghogens. Bacteria seek to leech off the body to survive>theyre a living organism that CAN die. Virals, on the other hand are PROGRAMED to destroy. Theres no ABX to eradicate virals.

Im tellin' ya...its the 'human' herpes viruses such as EBV, CMV, HHV6, Hsv1 &2, etc thats preventing Lyme victims from fully recovering!!!!

Virals studies is my thing!!!

I think we're all different in which infections we're susceptible to. I have bartonella, HHV-6, EBV, Mycoplama Pneumonia, Parvo etc.. I treated the EBV and HHV-6 with antivirals and nothing happened. I also treated the mycoplasma and am treating the bart but still to no avail
Posted 8/8/2018 5:57 PM (GMT -8)
call a rose a stinkblossom and it still smells the same ....if the med community could agree we would be further along ...

when my aids like wasting was at it worst i saw the bart/ myco connection to mitochondrial function. a er nurse said i was likely dying from disseminated cmv ...that's what they used to think killed aids patients before they found bartonella ....with als dx prions and hh6 may be at play since theyre just guessing ....but the venom will kill viruses! ...melts the lipid envelope like abx with a cell wall,,,a fellow named mathias on lymenet had a good list of susceptibility of mycoplasma according to type ...with abx but one had to take flouroquinalones ...i thought venom to be safer!

heres old news /www.medicalnewstoday.com/articles/257437.php
Posted 8/9/2018 7:04 AM (GMT -8)
"Don't ignore Mycoplasma. It needs to be treated just like lyme does and can become a chronic infection. One difference about mycoplasma is that to correctly treat it, it needs to be species typed. There are at least 4 pathogenic species: fermentans, pneumoniae, hominis and penetrans and the best antibiotics vary by species. They are very susceptible to floroquinlones.

Mycoplasma pneumoniae
Azithromycin (Zithromax)
Clarithromycin (Biaxin)
Erythromycin
Doxy, Mino, or Tetracycline

Mycoplasma fermentans
Gemifloxacin (Factive)
Clindamycin (Cleocin)
Levofloxacin (Levaquin)
Ciprofloxacin (Cipro)

Mycoplasma hominis
Gemifloxacin (Factive)
Moxifloxacin (Avelox)
Clindamycin (Cleocin)
Levofloxacin (Levaquin)

Mycoplasma penetrans
Levofloxacin (Levaquin)
Clarithromycin (Biaxin)
Azithromycin (Zithromax)
Doxy, Minocycline or Tetracycline

Note that Mycoplasma fermentans is highly resistant to Biaxin and Zithromax.

Hope this helps. It took me many years to be successfully treated " original post by Mathias on ln

This is not my suggestion see above post ..fq are black boxed !

Post Edited (bluelyme) : 8/9/2018 9:09:17 AM (GMT-6)

Posted 8/9/2018 11:26 AM (GMT -8)

mcspike said...
1st Id like to say, so that noone mis-interprets me; that Chronic Lyme disease IS REAL....

Ive been reading peoples experiences here, and Im hearing that 1, peeps either caugjt the illness fairly soon, OR 2, they were mis-diagnosed(or not at all) for a long time...hence what Ive referred to as the 'long-timers'...

So, my post here is my take on what Im thinking the illness should really be termed for the 'long-timers', as simply the chronically ill. OR, I like DR. Horowitz's term, M.S.I.D.'s. Thats the Most accurate, becausebfor us 'long-timers', its not just Lyme.

For ME, Lyme is the LEAST of my problems. Its the ONE infection that's submitted, forced into hybernation(if you will).
I remain chronically ill because of the mycoplasma that teams upw/the HHV6. I have an AIDS like illness. Oh, and i have 2 variences of that darned gene mutation( cannot remember its acronym). Ive been sick off&on my entire life!!!

So, do I belong here on this Lyme forum? Is there one for M.S.I.D.'s? Does it matter? Should Lyme disease be renamed, or should I just view it as a broad term, VS specifically referring to Borrellia?

What say you???

http://www.lyme-symptoms.com/CoInfectionsMycoplasma.html

The mycoplasma symptom list looks almost identical to Lyme. Have you ever hit it with a full buhner protocol plus maybe a macrolide?
Posted 8/9/2018 6:00 PM (GMT -8)

bluelyme said...
"Don't ignore Mycoplasma. It needs to be treated just like lyme does and can become a chronic infection. One difference about mycoplasma is that to correctly treat it, it needs to be species typed. There are at least 4 pathogenic species: fermentans, pneumoniae, hominis and penetrans and the best antibiotics vary by species. They are very susceptible to floroquinlones.

Mycoplasma pneumoniae
Azithromycin (Zithromax)
Clarithromycin (Biaxin)
Erythromycin
Doxy, Mino, or Tetracycline

Mycoplasma fermentans
Gemifloxacin (Factive)
Clindamycin (Cleocin)
Levofloxacin (Levaquin)
Ciprofloxacin (Cipro)

Mycoplasma hominis
Gemifloxacin (Factive)
Moxifloxacin (Avelox)
Clindamycin (Cleocin)
Levofloxacin (Levaquin)

Mycoplasma penetrans
Levofloxacin (Levaquin)
Clarithromycin (Biaxin)
Azithromycin (Zithromax)
Doxy, Minocycline or Tetracycline

Note that Mycoplasma fermentans is highly resistant to Biaxin and Zithromax.

Hope this helps. It took me many years to be successfully treated " original post by Mathias on ln

This is not my suggestion see above post ..fq are black boxed !

Well now that I’ve been prescribed Clindamycin - I will have been on at least one antibiotic for all strains.
Hope I’m covered!
Posted 8/10/2018 11:18 AM (GMT -8)
I'll never forget Clindamycin. That wiped out all of my good bacteria and I couldn't replace them fast enough with tons of high quality acidophilus. Be careful, it has high c-diff potential if you weren't already aware.
Posted 8/10/2018 2:57 PM (GMT -8)
mcspike, I'm totally where you are in my thinking these days... After 8 years of herbal antibiotic and anti-parasitic protocols and getting worse, it's occurred to me that my issues could be more viral. My labs showed very high EBV and we never even thought much of that. So I'm taking lots of anti-viral herbs now... cat's claw, lysine, olive leaf, silver... Too early to report on the results.

I think it's potentially dangerous to assume our symptoms are because of lyme that's not active anymore. I think if the invaders were gone, our bodies would be noticeably headed more towards health. But I do wonder if we need to think more broadly about who those invaders could be.

As far as what to call it... I still call it Lyme, because it's the best descriptor for the set of symptoms. I also like the Chinese, "Gu" syndrome, because it just speaks to that moment when the immune system is no longer running the show, and a myriad of invaders have taken over.
Posted 8/10/2018 3:28 PM (GMT -8)

phsinvent said...
I'll never forget Clindamycin. That wiped out all of my good bacteria and I couldn't replace them fast enough with tons of high quality acidophilus. Be careful, it has high c-diff potential if you weren't already aware.

How long did you take it and how often?
I will be taking it 3 days a month
Posted 8/11/2018 10:08 AM (GMT -8)

marigold33 said...
mcspike, I'm totally where you are in my thinking these days... After 8 years of herbal antibiotic and anti-parasitic protocols and getting worse, it's occurred to me that my issues could be more viral. My labs showed very high EBV and we never even thought much of that. So I'm taking lots of anti-viral herbs now... cat's claw, lysine, olive leaf, silver... Too early to report on the results.

I think it's potentially dangerous to assume our symptoms are because of lyme that's not active anymore. I think if the invaders were gone, our bodies would be noticeably headed more towards health. But I do wonder if we need to think more broadly about who those invaders could be.

As far as what to call it... I still call it Lyme, because it's the best descriptor for the set of symptoms. I also like the Chinese, "Gu" syndrome, because it just speaks to that moment when the immune system is no longer running the show, and a myriad of invaders have taken over.

But it also can change our bodies at the cellular level. People want to refrain from thinking about this, but we cant fix everything. The CDC's b/s label of "post lyme" is not totally false, but a good guess on their part for some of us.
Posted 8/15/2018 6:44 AM (GMT -8)

Girlie said...

phsinvent said...
I'll never forget Clindamycin. That wiped out all of my good bacteria and I couldn't replace them fast enough with tons of high quality acidophilus. Be careful, it has high c-diff potential if you weren't already aware.

How long did you take it and how often?
I will be taking it 3 days a month

I took it for about 10 days and it really wiped out the good intestine bacteria like nothing I have ever taken
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