Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hmmm.........was this a dumb question?
Is this something to do with the STARI found in the southern states?
Thanks for any info.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
It's not a dumb question. I've known of a couple of Lyme patients here out west that tested positive for it.
My MDL test results just came back and I'll be discussing all these types of pneumonia, viruses, mycoplasma, etc. that MDL tests for with my LLMD when I see him in a week, but I have no input for you yet.
I once ran across a website by accident that was for people with Chladmydia Pneumonia. I read some of their posts and it sounded like a Lyme board - people talking about herxing, etc.
Do a google search and I bet you'll find some good info. Is there something in the Newbie section here?
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Thanks a bunch, Jill. I did some googling earlier, best I could tell was I could find a connection with STARI.
And that hubby needs to be careful of his liver while on Ketek.
Thanks a bunch. Appreciate it.
Posts: 1366 | From Southeast | Registered: Sep 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I would like to hear more about C.Pneumonea
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
C. Pnuemonia is super duper interesting. I went to a board, and yeah it does sound like a Lyme Board. There seems to be a great difficulty in getting rid of C. Pnuemonia as it can cause problems errily similar to Chronic Lyme.
Another key to this disease is the use of Tindamax/Flagyl.
They cycle combinations of antibiotics very similar to us, and they also herx.
I recommend anyone with Lyme go to this website and read. The information presented there is great. It will help us understand Lyme Disease as well as some of the underlying principals behind persistant bacterial infections.
By the way, after I got done reading this website that I'll post shortly for the first time, I was almost convinced I had C. Pnumonia instead of Lyme, so be careful to guard yourself, while at the same time keeping an open mind.
Most of their science comes out of Vanderbuilt Univerisity, so they also have a university backing as we do with Columbia.
My personal opinion on this topic is skewed towards Lyme however. After reading this information, and doing several Pubmed searches, I believe Lyme is much more capable of causing chronic fatigue like symptoms, and is a much more difficult bugger to treat. Anywho, I'll find several links and post them shortly.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Jordan (age 15) tested positive by PCR. At the time, he was seeing Dr. J. Dr. J was testing a lot of his patients.
We've been told by both of the LLMDs that Jordan has seen that it will be treated by the meds used for Lyme and co-infections.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi again,
LymeScience, thanks for posting the CpnHelp website link. Yes, that was the one I had accidentally run across awhile ago - I believe I was googling something about antibiotics - and I was so surprised to see the similarities in their herx reactions and antibiotic regimens to those of us with Lyme.
And Boomerang, yes, it's vital to check hubby's liver enzymes far more often on Ketek than you do on some other antibiotics. I know I sound like the broken record on Lymenet, but I'm one of those that had serious liver damage from Ketek, so better to test the enyzmes more frequently and catch any enzyme rise quickly, rather than go on the normal enzyme testing schedule and already be in serious trouble like I was.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Thanks Jill. I'm wondering if taking the Ketek is worth the risk? Doctor only wants hubby on the ketek for a month....then will run more tests, I guess.
posted
Hi- I'm the founder of the www.cpnhelp.org site referred to above. Ketek is not considered a prime candidate in treating Chlamydia pneumoniae (Cpn). Like Lyme, Cpn is a multi-phase organism, so single antibiotics will kill it in only one phase, leaving at least two other phases untreated and reinfection likely. Using such a potent single antibiotic such as Ketek not only won't kill it, but obviously carries other risks as well. You can check out the recommended protocols in the Cpn Handbook link on the site, but basically it's working up to a continuous dosage of doxycycline and azithromycin, the use of NAC or amoxycillin continuously, and pulses of Flagyl or Tinidazole 5 days every three weeks. This covers all the Cpn phases. It is quite similar to some of the Lyme protocols (excepting the NAC which as far as I know does not act on any phases of Borrelia). Another possible source of liver toxicity in treating Cpn is not the drugs themselves, but the fact that Schwann cells of the liver can be significantly infected. When you kill the Cpn (and probably Borrelia as well) you kill many of the cells they infect. This can lead to liver crash even in more liver protective meds. Good reason to use NAC which protects the liver well. There are a number of research abstracts on this on site. I feel like we are brothers and sisters in these darned unrecognized infections, or as one of our members called it "a pre-existing non-condition." Hello from across the petri dish!
-------------------- Chlamydia pneumoniae seropositive, on Combined Antibiotic Protocol (CAP)for CFS/FM since 11/04 Posts: 11 | From Northern Ohio | Registered: Jun 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Thanks for the info. Will have to read up more on the protocol on your site.
I'm just not feeling comfortable with the Ketek. After the doc's office called and said hubby needed to take it, I came home and picked up the newspaper. An article about the Ketek drug being pulled in testing with childhood illness.
Next day in the paper, another article about liver damage in adults from taking Ketek. Maybe it's because we're in Tennessee, and some of the testing is being done at Vanderbilt? I dunno.
I just can't get that out of my mind, and don't feel comfortable telling hubby he needs to take it.
He has taken it for two days, but I think I'm going to tell him not to take it anymore.
Flagyl was a beast, but it didn't kill his liver.
What a nightmare.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Jim K. - Thank you for founding that website. The couple of times that I briefly visited, I was very impressed with the wealth of information. I will go back. And thank you for your explanation of the phased approach to antibiotics for CP. Yes, we are brothers and sisters in fighting challenging organismisms.
Do you find that many of the people on the CPN forum also test positive for Lyme? I'm wondering what the main form of transmission for CP is.
Boomerang, you'll need to check with your LLMD about how often to do the liver enzyme checks. Rather than the typical monthly or whatever, I now have to be checked every two weeks because of the damage Ketek did to my liver, although my enzymes finally returned to normal after many, many months, a liver biopsy, etc. But many people have done well. But my recommendation is to check the enzymes let's say every two weeks - who knows, maybe even every week. Better to be safe.
Check the search engine here - there are many posts about Ketek. Also some posts in the Newbie link.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Thanks Jill, I will do that.
I'm curious too about the method of transmission.???
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Hi Jill- Thanks. The main mode of transmission for Cpn is respiratory. It is a human to human and animal (often avian) to human. Basically, someone with respiratory Cpn sneezes on you! It tends to be passed more in small, intimate groupings like families and schools.
The kicker is that the organism crosses from respiratory infection into the blood stream by parasitizing macrophages and monocytes, which then get carried to other tissues. So disease patterns from Cpn are often vascular in nature, eg. the tendency of MS to occur first along neural vascular lines, or in tissues that require a lot of macrophage clean up from wear and tear (eg. joints, connective tissues, etc.). It is strongly implicated in cardiovascular disease, as well as in MS, Alzheimers, Behcet's disease, macular degeneration, etc.
As far as I know, only a few of the people treating Cpn on the cpnhelp site also have Lyme, but it seems from web sites I've been on that people with Lyme often have Cpn as a coinfection. Obviously, if your immune system is trashed by Borrelia, you will be more likely to get other bacterial and viral infections. Cpn seems more a common factor in CFS and FM. Cpn is so ubiquitous that by age 60, 60% show serological indicators for Cpn. This is not true of Lyme which requires a more specific vector for transmission as far as I understand it. But, like Lyme, the existing serology tests have a fairly high false negative rate, so testing isn't always a good guide. Hope this helps sort it out.
-------------------- Chlamydia pneumoniae seropositive, on Combined Antibiotic Protocol (CAP)for CFS/FM since 11/04 Posts: 11 | From Northern Ohio | Registered: Jun 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
this is interesting to me...because my symptoms really took off after 2 long battles with bronchitis.
im going to see if i can get tested for this as well.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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