posted
Is anyone on here familiar with this protocal? I'm seeing a new Doctor midstream through Lyme/Babesia treatment. This is the protocal she wants me to follow from now on. Recent blood tests indicate I have Chlamedia Pneumonia? What the hell is this? Is this a common co-infection of Lyme? I'm so confused!
Anyone with any insight on this would be greatly appreciated!
Posts: 69 | From fort collins, co | Registered: Dec 2007
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posted
The cpnhelp.org website is very good. They seem to be getting some good success with their protocol especially with MS.
Posts: 984 | From San Diego | Registered: Nov 2006
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Thanks for your replies. That is an interesting website, but I'm having a very hard time making sense of it. I'm even more confused if nobody on here-diagnosed with Lyme has been on this protocal.
When I lived in CA, seeing a Lyme Specialist, this never came up. I've since moved to CO and now all of a sudden I've tested positive for Chlamedia Pneumonia(sp?) and this Dr. say's she follows the Vanderbilt Protocal which seems to be linked with Morgellons (sp?). Not a lot of mention on the website about Lyme.
Has anyone on here been on the Vanderbuilt Protocal for Lyme treatment?
Posts: 69 | From fort collins, co | Registered: Dec 2007
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timaca
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Hi~ I have been diagnosed with lyme, then chronic viral infections (Stanford Univ. Medical center)...HHV-6, EBV and VZV. With valcyte those titers have come down.
It now looks like I have Cpn infection, as my IgG titers are 1:512 and IgA titers are greater than or equal to 1:256. What were your titers?
I will be starting some kind of treatment for this too....
Best wishes, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thanks for your replies, including PM's. I'm still confused about the whole thing and I can't call me Dr., cuz they only operate Mon-Wed...
Don't know my titers, will have to look into that.
The retired LLMD in CO trained a PA under him and that is who I am seeing. I think they are Lyme literate, but I'm not sure of the sudden change in treatment(Vanderbuilt Protocal) and don't want the last four years to go down the drain. I was starting to notice improvement in my health,not a huge difference but we all know how a slight improvement can give us hope. Now, I feel terrible again and just don't know what to do. Perhaps my new Dr. is on to something with the new Chlamedia Pneumonian diagnosis. So basically I think she is treating this. She also mentioned that I couldn't still have Babesia and I should stop taking malarone and artimisinen. She also told me to absolutely stop taking cholestramine and mentioned that it could be the cause of not being well yet because of it's binding effects. I actually felt better when I took cholestramine, but maybe she is right. I also know I was seeing a highly specialized LLMD in CA and this is a very different approach then she was taking. My CA LLMD also never mentioned Clamedia (sp?) in any testing and I had a lot of testing. My previous LLMD has cut me loose and is giving me the cold shoulder which is unexpected and so I feel like I'm flapping in the breeze out here with no REAL support. Sorry for the ramble, I think it's helping me process my thoughts so I can move forward.
Thanks!
Posts: 69 | From fort collins, co | Registered: Dec 2007
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It almost seems, and I'm just speculating, that it's less against the medical community for her to treat the Chlamydia than it is for her to treat the Lyme.
Babesia can be a persistent infection that is difficult to eradicate.
If you don't like this new one, I'd go back to your old one. He probably has to treat you differently since you are no longer a patient.
Mine works with phone consultations and I only go in a few times per year due to the fact that I have to fly there. Maybe you can make arrangements like this with your old LLMD.
Cholestyramine can be a help in Lyme treatment, especially if you have trouble detoxing.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
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Chlamydia Pneumonia (Cpn) is a bacterial infection that the CFS/CFIDS folks are looking at as one cause of chronic fatigue syndrome.
I just found out 2 days ago that both my IgG and IgM for Chlamydia Pneumonia (Cpn) were very high, according to my doctor's phone conversation. But, I've not been in an active cough for a year . . . Cpn can go beyond the lungs and the acute pneumonia infection.
HHV-6 also positive as are a couple strains of coxackie B.
I am looking at the www.cpnhelp.org site, too and the Vanderbilt protocol.
The IDSA guidelines for Cpn are similar to lyme with max of 21 days. I am looking to see what they say about chronic, but pretty bummed out about this so can't stick to the research long.
I am hoping my regular PCP will help, but it looks like I'll have to go out-of-pocket with this if it's beyond the IDSA approach.
One positive note is that the treatmentfor Cpn is similar to that of lyme. If Cpn is better accepted by our regular doctors, we might get the care we need for lyme in the process.
the www.cpnhelp.org site has lots of good information - I just find it very hard to read in its presentation/type style/ spacing.
Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia - An Opinion, by Patient Advocate James Kepner
ImmuneSupport.com
04-23-2007
The following article is reproduced with generous permission of the author, from the Chlamydia Pneumoniae (Cpn) Help website ( www.cpnhelp.org )
Editor's Note & Introduction:_Does chronic Chlamydia pneumoniae (Cpn) infection play a role in the pathogenesis or symptoms of some patients with Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and other unexplained illnesses?
It's a distinct possibility, based on a never-published trial conducted by leading CFS clinical researchers Peterson, Cheney, Bell, and Stratton in the late 1990's. Here's the story of that research and an opinion on its implications for CFS and FMS patients, written by James Kepner, a leader of the Cpn patient community.
. . .
What is Chlamydia pneumoniae? Extensive information about this organism and associated research is offered at the Cpnhelp.org site and in this article.
Briefly, Chlamydia pneumoniae is a bacterial organism first described in 1988 that is most commonly contracted by breathing droplets floating in the air after a person who carries it has coughed - as with the organism that causes tuberculosis.
Cpn can then infect the "mucous-moving" cells lining the airways. It can paralyze those cells because it survives by stealing their energy, and may cause a serious respiratory infection.
Then, if the body's immune response is unable to kill the invading Cpn bacteria, they can be disseminated via "mononuclear cells" in the bloodstream to infect other cells in the body, such as those that line the blood vessels, nerve tissues, brain, muscles, and even immune cells.
There again Cpn bacteria metabolize and damage these cells by "stealing" energy.
Further, the Cpn bacteria are drawn to newly formed mononuclear blood cells, which tend to be generated where there is inflammation in the body - and where the Cpn can cause a secondary infection.
And finally, Cpn passes through three forms in its life cycle, so that research indicates a combination of antibiotics may be necessary to kill it off in all forms.
"If you have inflammation, a spider bite, a viral joint infection, viral meningitis, or encephalitis," Dr. Stratton has said, "it doesn't matter what it is, if a Chlamydia-infected cell happens to end up in that inflamed area, you may have just started yourself a Chlamydia farm."
In which case Chlamydia may not be the cause of the disease, but may play an important role in its progression.1A
[at the article, you can link to citation: 1-A. See "Chlamydia pneumoniae not caught like you thought," Vanderbilt Medical Center Reporter, April 23, 1999.]
[ 02. May 2008, 03:06 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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tmmort: my doctor says Cholestyramine is toxic and will suggest something else for that purpose. Could be she meant for me, or the shellfish aspect (EDITED: CORRECTION- IT DOES NOT HAVE SHELLFISH) . . . I did not inquire further.
My doctor will also be using the Vanderbilt protocol and has been tutored by the retired LLMD from Colo. I'm not sure it's the same, but it seems similar. My next appt., though, is weeks away, due to various reasons.
part of the reasoning for the slower approach is to prevent herx, feeling that it's just counterproductive - even harmful - for the body to herx so much for long-term treatments.
I just got my news 2 days ago, so am rather thrown . . . I have more to learn about my new doctor's approach on this.
good luck as you figure this out.
[ 08. May 2008, 03:28 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
There is no shellfish in Cholestyramine ... that's a different product that has shellfish, but I can't think of the name of it off the top of my head.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
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My mistake about the fish. Did a little searching and I find that Cholestryramine is a RESIN but I can't find the what that source would be.
I don't know the research behind my doctor's decision to switch from Cholestryramine and did not find out what she now uses. (I'm wondering if it might be another resin, Guggul.)
Here's the fish: " . . CHITOSAN is a positively charged lipophilic fiber derived from shellfish. ..." CHITOSAN is used similarly to Cholestryramine.
posted
Yep, that's the one I couldn't remember! You probably read on this site that Cholestyramine has the shellfish .... I had .... but I researched it a bit more for someone else who was prescribed it who has a shellfish allergy and found out that the info I had read here was mistaken.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
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Thanks, SixGoofyKids . . . that's an important clarification.
I was able to read your posts and actually connect some dots. Perhaps my new Dr. HAS discovered something (CP) that was inhibiting my Lyme/babesia treatment....I need to get back to a place of trusting my Dr., but time will tell and I'm sick and tired of being sick and tired, as many of you know.
It seems that treating the CP is also treating Lyme, just at much lower doses than I was on before. I like the idea of less herxing, that's ok with me as long as all these nasty f------ bugs are getting eradicated and I can live a fairly functional life. I'm still not convinced this Dr. knows about Babesia and I will have to keep on top of that. Babesia symptoms are some of the worst and I'm currently noticing them, especially balance issues, dizzyness, sweating then cold, etc.....
I guess I have another bug to deal with in conjuction to Lyme/babs. Who knew life could be this difficult? So, I will keep praying for all Lymies and that this new Dr. knows what she is doing. She also say's she won't prescribe another Soma prx, hates it. I've been on it for years. I'm adding Lyrica and weaning off Soma similtaniously. I hope all this rocking the boat is worth it.
Thank you so much for your insight!
Jen
Posts: 69 | From fort collins, co | Registered: Dec 2007
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timaca
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Keebler~ If you are positive for HHV-6 please do some reading at www.hhv-6foundation.org. There is lots of good info there, also a patient's forum.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Hi all. One of the members on CPnhelp saw this but was too unwell to talk to you. I signed up so I could reply and hopefully give you some clarification.
I'm have MS and I'm on the Wheldon CAP Protocol for Chlamydophilia Pneumoniae (CPn). The Vanderbilt or Stratton Protocol is very similar and both Doctors share information and ideas.
You're right, the cpnhelp site can be extremely confusing. Many of the members have been on the protocols for some time and several of them are medics. It's all perfectly clear to them
We're all aware that this is no help to the new and confused so one of the members has recently completed a beginner's guide in what we hope is plain English.
If you go to the site, look at the tabs along the top and click Getting Started. It explains about the bacteria, what it does, what diseases it has been associated with, the protocol, expectations etc.
Yes, there is success but it's still fairly new and although more and more people are starting it, it's not a short term fix. Finding a GP to support you on it can also be a problem. Many have never heard of the bacteria let alone the protocols.
All the people on there have walked the walk or are still walking. They're a great bunch and if you have any questions or concerns, if you can't find it elsewhere on the site then sign up and ask. There's bound to be one of us at least half awake.
[ 04. May 2008, 09:22 PM: Message edited by: Andesine ]
Posts: 2 | From UK | Registered: May 2008
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Hi, I'm another one on the Vanderbilt-based protocol for chlamydia pneumoniae. We won't hijack your board, but one of our members said people here were asking about cpn infection.
Anyway, to answer the 'what the hell is this' question, cpn (chlamydia pneumoniae) is a bacterial infection that mostly hides inside your cells, rather than riding on the outside like most infections. This is why it's so hard to test for (amazing your doctors found it! congratulations!). Normal tests find antibodies in the blood. With cpn, antibodies are rare, as the white cells only recognize a threat they can 'see' and they can't 'see' cpn when it's hijacked a cell and multiplying inside, stealing the cell's energy for its own use.
Chlamydia pneumoniae is NOT the sexually transmitted disease chlamydia trachomatis and should not be confused with it. It's common and around seventy percent of the population has been exposed to it by age fifty. Many diseases thought to be attributed to 'aging' or 'old age' are now being seen as cpn-involved, such as rheumatoid arthritis, irritable bowel, multiple sclerosis, chronic fatigue, some heart conditions, anemia (cpn uses loads of iron to survive)...
Yes, the cpnhelp.org site is sort of complicated. (We're working on that.) But, if you just want to know the basics, you can either use that 'Getting Started' tab at the top or you can read UK microbiologist Dr. David Wheldon's pages on using the protocol for multiple sclerosis. If the link I insert here doesn't work, just google the words in my previous sentence. http://www.davidwheldon.co.uk/ms-treatment.html
The basic protocol is the same, regardless of whether you use it for MS, Lyme, chronic fatigue, etc. The folks at Vanderbilt University did a study a few years ago and wrote up a patent for this treatment, then released the patent to the public for humanitarian reasons, as they'd had such good results with treatment. (This way, no one gets to profit from their work, except, of course, the patients who are treated.) All of the meds are commonly used and most are available as generics. (Basically, it's 200mg doxycycline daily, 250mg of azithromycin on Mon, Weds, Fri, and - for five days out of the month, you add in 1000 to 1500mg/day of metronidazole. The cocktail is necessary to kill the bacteria in all three phases of its life evolution.)
I post under the same name over there, so feel free to pm me over there once you've read the basics. The board is full of nice people, sniping is unbelievably rare and, since we've all been sick, we are very understanding of brain fog and impatience.
Me, I was diagnosed with probable MS in August 2005, went on this protocol in October of 2005 and have recovered probably 98%. Not bad for an 'incurable' disease...
I hope this helps answer a few questions for you.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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timaca
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Thanks to the last two posters for explaining a bit more about Cpn. I sure appreciate it. It looks like it is a problem in me.
I did print out the Getting Started section at the Cpn website.
I can't quite figure out how the patient's forum works...it is more complicated than other patient's forums....
MacKintosh~ are you still undergoing treatment? Nice to know that you've improved so much!
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Timaca, Yes, I've done the full protocol for thirty-one months now and I'm maybe a few months from weaning myself off it.
I'd planned to give it a year to show me whether it was working or not, then I learned so much more about how this little beastie invades your body and decided better be safe than sorry and just stay on the treatment for a couple of years. Don't get me wrong; the treatment showed almost immediate effect on brain fog and short-term memory and it re-inflated my non-functional gallbladder ten days into treatment. The gallbladder surgeon said he'd never seen anything like it in his career and he canceled my pending surgery to remove it.
I was all ready to ratchet treatment down about a year ago and I noticed something very cool happening to me and felt I should stay on the protocol awhile longer, since it was obviously still helping me. (I've had a large, pea-sized lump - almost a small marble - under the skin on my left thigh for around fifteen years. Skin dr said it was 'too involved' near blood vessels to remove it and not to worry about it; it just happens as you get older. It was red and itchy when it started, like a mosquito bite, then it got kind of tough and I thought it was a clogged pore becoming infected. Eventually, it ended up reddish and kind of like a scar, with this lump under it. Suddenly, after a year and a half of antibiotic treatment, it began to shrink. And shrink. It's the size of a small seed now and I can still feel it diminishing. Now I think it was a nasty little pocket of localized cpn infection that's been dealt a death blow by the antibiotic protocol.)
I think, since the antibiotics were still helping, even when I thought I was done improving, who knows what they're still addressing inside of me? Bone marrow? Joints? I'd rather treat a little bit too long than not enough, because I'm never going through the hell I went through with chronic fatigue symptoms and then the onset of MS. Once was plenty, thanks!
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Jen, Your doctor sounds like a gem. Chlamydia pneumoniae was only recognized a decade ago, though some pioneers in the MS field searched for a bacterial or viral cause decades ago. Now cpn has been observed and its 'stealth' nature has been uncovered, there's new research coming out on it more frequently. Kudos to a doctor who not only KNOWS about it, but is smart enough to pursue treating it.
For many, many years, I thought I must have Lyme or chronic fatigue, with my ebbs and flows of energy (months and years at a time of good or bad times). It wasn't until the bacteria made it through the blood/brain barrier and it manifested as MS did I aggressively hunt for an answer. Fortunately, because Vanderbilt published their patent info, I found Dr. David Wheldon, who modified the treatment to arrest his wife's rapidly progressing MS. I was willing to fly to England to see him, but found the treatment was so simple I didn't need to.
And, as for less herxing, I'm with you. This protocol was designed to be as tolerable as possible, so people can still live their lives while they undergo it. And, by the way, Vanderbilt's research lab has just reopened and they are seeking a faster, more efficient treatment, so we pioneers may be the only ones who have to do treatment for a couple of years' time. (Ah, but a vaccine would be best.)
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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timaca
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Thanks, MacKintosh for taking the time to post here at Lymenet. Did you have any other symptoms except fatigue?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Hi timaca. The reason the cpnhelp looks a bit complicated is because it's not just a forum.
There are two areas to it. The first is a forum like this which you reach from the pink tab at the top. Members can just post questions in there same as here. There's also an off topic bit for chats.
Where I suspect you're getting confused is we also have the ability to post an ongoing blog so we can keep a treatment diary.
It's pretty important as others can check out their symptoms and know they're not alone, especially as many of us are self medicating. Plus, if the powers that be ever get interested they have ready made data.
MacKintosh is one of our stalwarts and can give you good advice and solid experience.
Posts: 2 | From UK | Registered: May 2008
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Timaca, (above 7000 ft in a pine forest? I think I'm jealous!)
Yes, I had other symptoms before it evolved into MS. Which is another reason the bacterial basis seems so reasonable. Until the bacteria made it through the blood/brain barrier, it wasn't MS, just general bizarre little stuff.
One month, I'd have energy and mental clarity and another month, I could barely drag myself to work and home for a couple hours' nap, then dinner, then bed. I could sleep twelve or more hours on weekends during those periods. Brain fog, with increasing loss of short-term memory, was coming and going (I couldn't remember a phone number and had to read each number one by one off the paper in order to dial it.)
I thought I might have tetanus, as my jaw started to lock and was painful (had a couple of huge bouts of tmj in my early twenties, but nothing like this), and there was nerve 'tingling' in my fingers and toes. Also, I would bounce off of door frames whenever the least bit tired, with poor spatial judgement. I also noticed, around 2001, that I was kind of 'tremoring' and thought 'oh, this is like Katherine Hepburn'.
Since I spent my summers in Wisconsin for many years and spent two vacations just outside of Lyme, Connecticut in the last decade, I had no idea if it was Lyme and I tested negative, but we all know how reliable tests can be. I started Dr. Wheldon's protocol for chlamydia pneumoniae because I had a diagnosis of 'probable MS' and knew the protocol addressed cpn as well as Lyme.
By the time I'd started, however, I was experiencing the whole gamut of nerve involvement. I had optic neuritis, which just might be the first signal cpn has hit your brain. Then I had a weaker left side and inability to hold a glass with certainty. One eye started to twitch when I was stressed. I developed spongey feet and was falling a lot because my right foot was lagging. Then there was a burning sensation in the front of the left ankle and shin. My body temp was always low, 97.2 to 97.6, as I recall, and it had started fluctuating wildly, plus I flushed red in my face on any exertion. I'd had three massive gallbladder attacks in a year and it was nonfunctional and flat, like a deflated balloon. I was scheduled to have it removed ten days into the antibiotic protocol (canceled when it 'righted' itself on the meds).
You know, I didn't think I was such a mess, but I guess I was. One of the things we realize is how your judgemet is impaired by this bug, so you don't have a valid picture of how ill you really are. It's probably the bacteria's mechanism of not killing the host, but making the host benign as it declines.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Thanks for your generosity in walking us through the basics of cpn and the treatment protocol. I had visited the website a while back when I had some questions about NAC, but have not been there in a while. Sounds like it's time to go back and see what can be gleaned.
Question: Is there any medical practitioner currently at Vanderbilt who is treating with this protocol, or it is only being looked at in the research labs?
There are a few of us in TN who have to drive 8 hours or fly to see a LLMD. Sure would be nice to know if there are any local practitioners of long term abx treatment hiding in the woodwork...
Needless to say, the Infectious Disease doc my husband saw at Vanderbilt was...uh...less than helpful when he was was seeking a diagnosis...
Thanks again for the rich information!
Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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timaca
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MacKintosh and Andesine~
Thanks for taking the time to post and share your experiences.
MacKintosh~ I have many symptoms similar to yours...brain fog, nerve pain (full body), fatigue, joint pain, muscle pain, cardiac issues, GI issues...the list goes on.
Antibiotics for lyme did help, then I relapsed. Valcyte has helped too (I had high titers to HHV-6, EBV and VZV). The viral titers have normalized. Now it looks like I have high titers to Cpn (IgG 1:512, IgA >=1:256) (Do these look high in your opinion?? That's what I've been told).
Hopefully, there will be a doctor willing to treat the Cpn. I see one on Friday...then one on Tuesday...
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Vanderbilt. I know there are doctors at Vanderbilt prescribing the protocol, but I am only certain of MS patients. I'll ask on my home board and see what I can come up with for you, if not at Vanderbilt, then in the area.
If anyone needs a cpn doctor in the Chicago area, I can (privately) recommend mine.
I'll check those titers and see what our medically-minded folk have to say on the bacterial load. I've learned a lot since getting sick, but not enough to answer off the top of my head!
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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posted
Okay, I lifted this from the post of one of our most knowledgeable members on cpnhelp.org. She was remarking on her own test results (which I have edited out), and referenced the range for cpn results.
IgM (Reference range: Less than 1:16)
IgG (Reference range: Less than 1:32)
IgA (Reference range: Less than 1:16)
Timaca, Yours are IgG 1:512, IgA >=1:256, which puts you over the limits.
Everyone, please understand, though, that these are not hard and fast numbers. Several of our members, including the artist Sarah Longlands, wife of Dr. David Wheldon, UK, had numbers that would barely qualify them as being 'infected', yet the treatment very clearly reversed their illness. Take the numbers with a grain of salt, as this bacteria was only formally discovered a decade ago and there's a lot to learn yet.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Bugg
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posted
Macintosh and others familiar with CPN--
Do you know why so many lyme patients often test positive for CPN one month and then negative the next month? ...It makes you wonder how you're supposed to determine whether to explore/start the CPN protocol???? Incidentially, I tested positive for it through MDL labs and then after treating for babs for four months with Zithromax, Mepron, and Artemisinin, I now routinely test negative for CPN.....I've also noticed that lyme patients will sometimes test positive one month for Mycoplasma P and negative the next month for Mycoplasma P....
Any insight regarding the aforementioned? Thanks so much...
Posts: 1155 | From Southeast | Registered: Oct 2005
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Keebler
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Timaca - thanks for stuff on HHV-6 - they also cover seizures - and that's a big deal for me. Doctor said positive for pasts exposure, but not too bad .
HHV-6 IgG 1:80. Ref. range is < 1:80.
Wants to wait on HHV-6 treatment, test again later - and probably address with just immune support, not anti-viral -
but now start Vanderbilt protoco. However, doctor said Cpn was not active, but exposure. Maybe I didn't hear it all correctly. But the numbers seem to speak.
that HHV-6 site is awesome - and a conference next month - for those interested.
my Cpn
IgG >= 1:1024 ref. <1;:16
IgM <1:10 ref <1:10
IgA 1:256 ref <1:16
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CPN FOLKS - Please hang around for a few days with this thread.
It's awfully hard figuring out a new one, but will study how to do that.
more questions tomorrow.
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[ 08. May 2008, 11:00 AM: Message edited by: Keebler ]
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timaca
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Keebler~ Your HHV-6 is not high enough to warrant treatment. Mine has finally dropped to 1:80 from a high of 1:640.
However, your Cpn does look suspiciously high.
And I second your request for the kind Cpn posters who are helping us! Please stick around for a bit longer!
I am off to see the ID doctor who is overseeing my viral issues...wish me a good appt!
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Keebler
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one reason I've not search the Cpn site is that it's such tiny print and my eyes just swirl.
However, I just figured out that I can enlarge it with the click of two computer buttons on my Mac: the "apple" key and the + sign at the same time.
for others with PC's there may be a similar way. I know that will help for those with neuro stuff.
at the Cpn help site, for newcomers, off to the right hand corner is a link asking New folks to help them out.
to save time they ask for new comers to read a few links before posting any questions. It is a brilliant idea to save time and energy for the seasoned ones who can get worn out answering the same stuff all the time.
I'll also be Keebler over there, but looks like a bit of reading to catch up on first. There is a 50 page handbook to download there, too. Guess this is a "new semester" for me now.
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[ 08. May 2008, 12:20 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Bugg: Macintosh and others familiar with CPN--
Do you know why so many lyme patients often test positive for CPN one month and then negative the next month? ...It makes you wonder how you're supposed to determine whether to explore/start the CPN protocol???? Incidentially, I tested positive for it through MDL labs and then after treating for babs for four months with Zithromax, Mepron, and Artemisinin, I now routinely test negative for CPN.....I've also noticed that lyme patients will sometimes test positive one month for Mycoplasma P and negative the next month for Mycoplasma P....
The simplest explanation (and I can only answer for cpn, though it may mirror Lyme) is that cpn has the ability to morph or adapt to its situation. Cpn has three life phases, elementary bodies, reticulate bodies and cryptic form. Basically, it can hide and go dormant while waiting for a threat to pass. Antibiotics and probably certain other agents pose a threat, so it camps out and waits and nothing shows on the outside of the cell and not much in the bloodstream, so testing doesn't register it as high enough to need attention. Next month, when you've had a ton of sun exposure or extra vitamin D, for example(a cpn killer) the little beasts have been driven out of their comfy space and now they do show on tests. Testing is notoriously unreliable for cpn for exactly this reason. Only a few labs use the protocol set forward by Vanderbilt and so those who test for cpn without those criteria have a very hit and miss result.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Guys, I've had no response for a non-MS cpn doctor at Vanderbilt or in the vicinity.
What I was advised, though, is that Dr. Stratton has a website and he is very willing to consult with your personal doctors on cpn treatment. I haven't had time to hunt down the site, but if someone here finds it, please post it. If not, be patient with me and I'll find it on the weekend.
I'm restoring a hundred year old house and while I'm on vacation (now) I have to find the tile, buy plumbing fixtures, pick up and install the several antique light fixtures that were just refinished and rewired, etc. I'll hop on LymeNet every other day, though, so keep the questions coming. If I can't answer them, I'll find you someone who can.
Also, the cpn site is undergoing a site review for usability and accessability right now. I know there's a way to enlarge the type and I'll find that for you, too, and will post it here.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Boomerang
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Thanks so much, Macintosh!
Posts: 1366 | From Southeast | Registered: Sep 2005
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kelmo
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Timaca: My HHV6 is 1:640! Doc mentioned putting me on antivirals, but we are boosting my D3 level first.
I asked to be tested for it, and he was surprised it was positive.
So far...my lymph glands are taking the hit. So, my body's immune system must be doing something.
Posts: 2903 | From AZ | Registered: Feb 2006
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Bugg
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MacKintosh--
Thanks so much for your thorough and insightful response. It's really wonderful that you are trying to help lyme patients understand CPN.
I'm going to be testing again soon for CPN...I've tried to find the place where it desribes the testing but cannot...What lab does Stratton recommend???
Also, do you find that many people with CPN routinely test positive for Mycoplasma P???
If you read many of the lyme patients post on this board over the years, many will discuss testing positive for CPN and then routinely testing negative. Also, many will report positive titers to Mycoplasma P and then test negative again...
When I asked my LLMD about this, he says he commonly sees people with compromised immune systems testing "falsely positive" to certain bacteria/viruses.......
SO....If you routinely test in an inconsistent manner, how do you know when to treat for CPN or Mycoplasma P??? Is there a "high titer" criteria to meet? What are the key "clinical signs" that Stratton would look at to determine when to treat or not to treat???
For example, many people on this board will test negative for babesia but docs will treat it because they exhibit "classic" babesia symptoms such as severe night sweats...
Thanks so much for any insight regarding the aforementioned questions....
Posts: 1155 | From Southeast | Registered: Oct 2005
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You're asking what 'symptoms' to look for and I can't give you much more than disease names. It's become evident to us that cpn infection manifests itself differently, depending on the sites it colonizes and your genetic predisposition to weakness in certain areas. If you have low iron, low D levels, extreme fatigue, neurological issues, IBS, high blood pressure, MS, chronic fatigue, gastro issues, rheumatoid arthritis, possibly lupus, rosacea... and I'm sure I'm missing some others...cpn is a likely culprit. (Though it may not be the only one. You're already seeing mycoplasma may be a co-infection in some people.)
Most of us (early patients) treated empirically for cpn. We couldn't find consistently good testing sites, so we went on symptoms and logic. A good test is to take N Acetyl Cysteine, which is great for liver support and shouldn't show any kind of reaction in a 'healthy' person.
If you take it and get what we call 'NAC flu', you can probably be reassured you have a cpn infection and should try the Vanderbilt or Wheldon protocol.
NAC flu is basically a 'flu-like' reaction to NAC. I believe they come in 600mg capsules and you start with one capsule.(I routinely take 2400mg/daily, and will for the rest of my life, as it will inhibit any future cpn infection.)
It can be as mild as a runny nose, to fluctuating body temps, to tinnitus, to a feeling the 'flu is coming on' (that body ache, back of the calves weakness, headachey, ear ache thing). These would not be normal reactions to taking NAC, which is pretty benign. Sinus involvement or lung congestion or the flu-like reactions after taking NAC are telltale signs. I had a constantly runny nose, mild inner ear pressure and a fever-like feeling, but no fever. It can last from a few days to a few weeks, once you take NAC consistently.
I'd say, if you take one without response, then take two the next day, and so on. If no reaction to four of them (2400mg), maybe there's no cpn. My view was, the science is so sound on cpn, although there was little of it when I started antibiotics in 2005, I would have done the Wheldon protocol regardless.
Will check our board for testing facilities. Only recently has anyone even recommended any, as they've been so notoriously unreliable. I believe the University of Madison or University of Wisconsin at Madison has a lab, but I don't know if they test patients or just do research.
By the way, everyone - pick up a copy of The Potbelly Syndrome. It clearly outlines the role cpn plays in a number of illnesses, including high blood pressure, diabetes, weight gain, etc. I read it just before I was diagnosed and sort of set it aside as 'interesting' until I got the MS diagnosis and went back and devoured the book. The author, Russ Farris, posts over on cpnhelp occasionally.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Bugg
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MacKintosh--
This is a fantastic explanation...Thank you very much....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Keebler
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Yes, thanks, MacKintosh, for the NAC info. (very telling) and for the book reference.
MacKintosh, you've really take a lot of time this week to help out some of us here - and I'm adapting to the new site as I learn how to prepare for Cpn treatment.
I will get one of the Pot Belly Books and hand it out to everyone who thinks I must eat twinkies all day - when that is very far from my gluten-free, organic existence. But, more importantly, I hope to learn a lot from it. Something has to change.
I've been exploring the cpnhelp site. Lots of detailed stuff. A trip to Oz for a brain would sure help now.
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback)
by Russell Farris (Author), Per Marin, M.D., Ph.D(Author); Foreword by Richard Huemer, M.D.
$12.21 - 2006 �
You can search inside the book at Amazon and click on the separate link for the 8 full reviews.
Best is the review from (another author): Katherine M. Poehlmann "PhD author, researcher" (Torrance, CA USA) . . . a gem of a self-help book and a valuable resource!, October 15, 2007.
posted
Testing facility for cpn: MAYO Clinic, for pete's sake. Apparently, it's pretty reliable these days. I'll keep shopping for others for you.
Thanks, Bugg! (Check your pm box- can't answer because it's full.)
Keebler, Your post has me laughing out loud, in a good way. My cat had two kittens last night and one didn't make it. The other one, she rejected. I spent my day making sure it would live and it's now with a kitten-foster-mom, who can nurse it til it's weaned. Bad day; very draining. Your post was a gift.
I appreciate the thanks. When I was panic-stricken at the MS diagnosis and had lost seventy percent of the vision in my left eye (now returned), I spent between six and twelve hours a day on the internet, trying to figure out why my body would suddenly turn on me and start chewing on its own myelin. It took a couple of weeks of weeding through a lot of muck and flat-out misdirection, but I found what I think is the primary answer - chlamydia pneumoniae bacteria.
There are people who are without computer skills, or too far into denial or brainfog, who can't get these answers for themselves and whose doctors can't or won't do it for them. If I can help one person regain their quality of life, give one mom back to her kids, get one brother or sister back to family parties and graduations, I'm happy. Too many productive, smart, funny, wonderful people have been lost to this insidious bug, no matter which disease it eventually manifests itself as.
I'll keep checking back, but if someone needs something 'right away' then send a PM on this site, because I'll be notified by email as soon as you do and I can respond faster. By the way, I've been asked, so here you go; I'm a girl. MacKintosh comes from the piece of artwork hanging in front of me when I had to choose a screen name three years ago to get on ThisIsMS. (Charles Rennie Mackintosh)
You guys are the best!
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Keebler
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MacK - sorry about the kitty. hope the survivor does well.
Hey, also from the girls' club here . . . I haven't had a cookie since 1990 (uh, mostly - really) but I love the little Keebler guys from the commercials long ago. Their little tree hovels seem lovely.
As far as my getting overwhelmed and lost on the Cpn site, I never thought to really look at the top row. Or I clinked on a side-bar and forgot about the top. That's where the meat is. Just click. Oy, Vey!
posted
Keebler, It's bits of info like that which will help us 'clean up' the site. We're hoping editing the home page will allow a larger typeface to appear, too. I'll pass the info along on the top tabs and maybe we can get them to be larger or in a different color. Good point!
Um, I wish I could say cookies and I (biscuits, to the Brits) have only a passing acquaintance, but I would be lying. I haven't changed a thing about my admittedly 'bad' lifestyle since going on the antibiotic protocol. I made a conscious choice to test the protocol with no other lifestyle changes, else I'd never know what really fixed me. Had to be the antibiotics, because it surely wasn't diet or exercise. ;-)
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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timaca
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Kelmo~ Glad you found the HHV-6. Were you tested at Focus lab?
My HHV-6 was 1:640, and it has now dropped to 1:80. I was on valcyte for 9 months.
MacKintosh~ Thanks for all your help. The doctor that I saw yesterday is recommending a several month course of doxycyline (200 mg daily). I'm pleased that he is willing to treat me. I gave him several articles on Cpn, including different protocols (Stratton and Wheldon). If his method of treatment doesn't work then I will ask if we can try one of the protocols. I did not want to suggest trying on of the protocols first, as he has had success with his treatments, and I certainly don't want to come across as being the one in charge. I am just so grateful that he will take this on!!
Thanks for everyone's input.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Timaca, His method of treatment won't work. The upside of it, though, is that we start with doxy and then add the azith on mon, weds, fri, so you'll be doing the beginning of the protocol, anyway, and will be prepared to add the other meds.
The bacteria has three life-phases and it HAS to have the full cocktail of meds in order to wipe it out, otherwise you're just driving it into hiding and it will rear its head as soon as you quit the doxy. I'll pm you.
I'm glad the dr is open to this. Now you have to get over the hump of understanding, or mis-understanding about how tough this bug is to kill. If you think in terms of a drug cocktail and the long timespan it takes to wipe out a case of tuberculosis, it's more in keeping with what we're talking about.
Since Dr. Stratton is open to phone consults with treating physicians, why not put them in touch with one another and then you don't have to come off as the know-it-all? ;-)
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Keebler
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MacKintosh - just one question: is there an alternate to doxy?
I ALSO JUST POSTED THIS AT THE CPN SITE - under JimK's new blog.
this is why I ask:
I see my PCP today (Sat.) = last appt of the afternoon. Preparing to begin. Cpn IgG was over 1:1024 - ref is 1:16; IgM, fine, matching the ref. range; IgA is 1:256 - ref. is 1:16 - test was done 10 days ago.
While my ND is guiding this, she suggests a modified protocol as well. I will see her again in a couple weeks. I've tried modified this and that for over 10 years and I'm still very ill (but never had a lyme doctor). So, I want to do this by the book.
Her approach, though, is guided from a retired lyme doctor who want to prevent herx reactions and their stress on the body. It has a great deal of thought with lyme patients, but I'm not sure about Cpn.
I will go back to ND after I've read and studied more and ask her advice, but I want to have exactly what the detailed plan would be for reference.
I hope to ask my PCP if he's would be on board, as then them meds would be covered by insurance.
you mention the protocol starting with the doxy.
I cannot take doxy as, within an hour or two, I break out in about a dozen silver-dollar sized rashes that itch and burn terribly. It is torture and I could not bear to have it continue.
I used to be able to take it and it would lessen hyperacusis and prevent sound-triggered seizures. But then the rash. Tried it several times later. Same thing.
It takes a week to subside and then some grey scaring is left for months. the circles are always in the exact same place (not a bulls-eye, though, but a bit redder in center, so it may be lyme die off - or a developed allergy. My PCP thinks it begins too soon as he says it wouldn't even be in my system yet, but it does happen - for up to 5 tries over a couple years. It used to help my fly, when nothing else worked to soften effects of sounds.
Since I have no lyme doctor and getting one is not an option, and I do have very high (chronic persistent) Cpn results, treating that is what I'm set to address.
Minocycline sends tinnitus to the moon and is ototoxic for my tender ears. the NAC with the Cpn protocol may help prevent that, though, so I'm so glad to see NAC widely used.
Still, is there a suggestion for substitution of the doxy (other than mino) - or can you direct me to place that might discuss that?
I'm reading as fast as I can, but I've not found that. Guess most people have no trouble with doxy. -
I will ask my PCP to contact Dr. S.
At least I'm already up to speed on the porphryia stuff around this, having been dx with that a decade ago. Glad to see a whole group of doctors taking note of the porphryin reactions.
thanks, again, MacK.
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[ 10. May 2008, 02:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Oh, no, never too many questions! What you describe as reactions to doxy sound like classic die-off to me. Vanderbilt designed this protocol and then David Wheldon refined it, both with the intent of making it as do-able as possible, with the lowest amount of die-off reactions, yet still being effective. Some people have such a high level of cpn and/or co-infections, it's hard for them to ramp up into full protocol. It's taken a couple of people on cpnhelp months to do so. (I started full protocol right off and my worst reaction was needing a LOT of sleep, so all of us are different.)
Okay, I'm snagging Dr. David Wheldon's schedule of treatment here: This is one schedule that strikes all stages of the organism's life-cycle. Other equally good schedules are possible. It is important that a committed care-giver (for instance, spouse, partner or parent) should ensure that medication is given, and swallowed, consistently.)
Doxycycline 100mg orally once daily is taken with plenty of water.When this is well tolerated,
Azithromycin 250mg orally, three times a week should be added. (Roxithromycin, 150mg twice daily, is an alternative.)
When these are well tolerated, the dose of Doxycycline is increased to 200mg daily.The reason for this slow, step-wise introduction of antichlamydials is to minimize any reactions caused by bacterial die-off. These can be unpleasant.
NOTE: in rapidly progressive MS it may be prudent to offset the benefits of stopping progression against the risk of reactions, giving full doses of azithromycin and doxicycline from the beginning.
This combination is taken continuously. Two or three months into the treatment regimen three-weekly cycles of intermittent oral Metronidazole are added. During the first cycle metronidazole is given only for the first day. When metronidazole is well tolerated the period of administration in each cycle is increased to five days. There is no reason for the intermittent use of metronidazole other than acceptability: if someone undergoing treatment is able to take longer cycles of metronidazole then it seems reasonable that they should do so. The dosage of metronidazole is 400mg three times a day. If it is suspected that a patient may have a heavy chlamydial load a smaller daily dose may be given initially.
N-acetyl cysteine (NAC) 600mg daily - 1,200mg twice a day, should be taken continuously. This is a commonly-taken dietary supplement, available at health-food stores. It is an acetylated sulphur-containing amino-acid, and may be expected to cause chlamydial EBs to open prematurely, killing them. NAC should be started at the lower dose of 600mg daily; the dose should be doubled when well-tolerated. NAC offers liver protection; this may be useful, as rapid bacterial die-off may compromise hepatic function. If a trial NAC produces unpleasant reactions, its administration may be delayed until antibiotics are well tolerated. Doxycycline and azithromycin may be expected to slowly deplete the chlamydial EB load by destroying them as they enter host cells.
The period of continuous treatment needs to be of the order of a year. This is very important, as the organisms are extremely difficult to remove from certain cell-types. The recommendations for acute infection (typically 2 - 6 weeks monotherapy with doxycycline or a macrolide) are totally insufficient. The organism is not killed by such treatment, but is instead driven deeper into a persistent state. This is recognised but not widely appreciated. [See: Woessner R, Grauer MT, Frese A et al., Long-term Antibiotic Treatment with Roxithromycin in Patients with Multiple Sclerosis. Infection. 2006; 34(6): 342-4.] Roxithromycin alone for three 6-week periods did not help these patients; this outcome was predictable. The difficulties of treating persistent chlamydial infections with traditional antimicrobial schedules are ably discussed by Villareal and co-authors [Villareal C, Whittum-Hudson JA, Hudson AP. Persistent Chlamydiae and chronic arthritis. Arthritis Res. 2002;4(1):5-9.] Effective treatment needs to be addressed to all stages of the organism's life-cycle.
The eventual aim is to give all three agents intermittently so that there is some respite from antibiotics. This, the final leg of treatment, may entail a 14 day course of doxycycline and roxithromycin, with a five day course of metronidazole in the middle. This course is given once a month. After several months the intervals between the antibiotics may be cautiously extended. Rifampicin is not suitable for intermittent use, and azithromycin may be given instead.
***** Doxy and minocycline are the preferred choices. I did a check on cpnhelp and found several people did better on generic mino rather than name brand, don't know why.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Keebler
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Thanks, MacKintosh.
Perhaps with the NAC the doxy rash won't happen. But, if it does, I'll have to stop.
Hopefully, my doctor can call one of the protocol specialists.
- oh, I had posted this same question at the cpnhelp.org site . . in case you weren't able to check back in. Now I cannot figure out how to delete that post.
timaca
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Hi MacKintosh~ I do understand what you are saying about the different life forms of Cpn, and how it needs several antibiotics to kill it off. My hope is that the doctor that chose to treat the Cpn will look at some of the info I gave him....
Then, if his approach doesn't work, I will certainly suggest that he talk with Dr. Stratton. I just didn't want to do that this time, as I feel like I am still establishing a good relationship with this doctor and I don't want to offend him. He is a good doctor, and knows much, and I am so grateful that he recognized that my antibody titers were high and was willing to begin treatment.
We'll just go from there...
Hopefully, I won't get C. difficile. I had that for most of 2006, and it was NO fun.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Keebler, I caught the first post on cpn, but by the time I responded, you figured out what you were doing and it disappeared. ;-)
I'm thinking, take the script for doxy or whatever the dr gives you and stash the pills. Start with NAC and see if it has a reaction. You can start with minimum NAC and do it every other day or every third day... whatever you can tolerate. Then work your way up in dosages.
NAC bursts the elementary body form of cpn and you will get some die-off, which will help prep you for when you do antibiotics. We all know we're going to get 'sicker' from doing the treatment, as the dead cpn is toxic waste, but I'd be asking your dr for meds to counter the skin rash when he/she dispenses the doxy script. (Lots of people on cpnhelp have had skin rash early in treatment. As you know, skin is your largest organ, so it makes sense that it harbors lots of cpn infection.)
You might want to write a PM to Michele at cpnhelp (that's one L, not two). She's had alopecia and this treatment resulted in lots of skin outbreaks, including bumps, real bumps. She might be able to advise you how to proceed.
Also, I saw an allergist before starting and he suggested I take benadryl after taking azith, to minimize skin rash, etc. He knew I wasn't allergic, but said skin rash was possible and benadryl would help. Lately, a lot of people on cpnhelp.org are taking benadryl with the protocol, just to reduce inflammation from die-off.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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timaca
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deleting post
[ 11. May 2008, 10:06 PM: Message edited by: timaca ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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timaca
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Mackintosh~
Thanks for the info. I deleted the post so as not to confuse others.
Best, Timaca
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Keebler
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MacKintosh - please check your PM.
I am having trouble posted at cpnhelp.org - seems I tried to clean up format so many times on a post I've been flagged as a spammer.
I have that post and it has some key information in it about a comment regarding tryptophan. As many posters there deal with secondary porphryia, the articles I had cautioned about that as it can cause damage.
for others here interested, I started by searching PubMed with the two key terms: tryptophan, porphyria.
For those at this site: The reason this is important is that when the liver is stressed, even if genetic porphryria is not a factor, secondary porphryia can be...so lyme / CFS / Cpn patients sometimes do well to keep excess porphyrins low. In excess, damage can occur. Also, genetic porphyrias often go undiagnosed until a acute attack. A very complex topic but that's for another day.
MacKintosh - I will send you the post I had intended, and if you feel it is important please post it.
Also, there is no way to contact the administrator - that I see - to clear up my being blocked. I'll just wait. I need to stay off computer for while anyway and get some stuff done.
Thanks.
Posts: 48021 | From Tree House | Registered: Jul 2007
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MacKintosh-thanks for posting this thread. I got The Potbelly Syndrome book and started reading it yesterday. The book lists several different website for cpn treatment protocols. One of the sites (Wheldon) states 200 mgs. doxy once daily and roxiromycin twice daily. I think I read in your thread 200 mg. doxy and azith Mon. Wed. Fri.
Are there different protocols? The author of the book started out with clarithromycin (biaxin).
Have the protocols been updated? I haven't finished the book. It's going to take me awhile to understand a lot of it but any help would be greatly appreciated. Thanks for all of your great info!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Sunnymalibu - In the U.S., we use 200mg doxy daily, 250mg azithromycin every mon, wed and fri, and then, one week out of every month, we add in five days straight of metronidazole (flagyl) at 1500mg per day.
Dr. Wheldon's a Brit, and the meds and the dosages are slightly different there. I think flagyl is a 400mg pill, so he recommends 1200mg of flagyl or tinidazole each day for five days.
One of the meds isn't approved in the U.S. My feeble brain (today was my first day back to work after vacation) says its roxythromycin. Some people resort to the internet to get around U.S. restrictions. If I got that one wrong, I'll come back and correct it. ;-)
There's a new, very experimental, version of the protocol, but it's been prescribed for very specific needs at this point and is causing a stir on our board. We stress that newbies should not try it when first starting out.
Actually, the author of Potbelly posts a little bit on our site and if you come by there and post a topic with his name in it, he'll likely see it and would be able to answer you directly. Your version of Potbelly is probably very recent, as he edited some of the cpn resources in after I bought my version. It will be a lot easier for those who get later versions to find the websites and research materials we earlier pioneers had to scrounge up for ourselves. THAT is a very good thing.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Boomerang
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Mac, I believe you are correct about the roxy.
Posts: 1366 | From Southeast | Registered: Sep 2005
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I'm just bumping this to see if anyone who needs to ask questions wants to post (or send a pm, which is fine by me). I'm only checking in here once a week now.
I see a few have made it over to cpnhelp, which is enriching the site with a lot of Lyme insights, so this is a win-win. Several people over there are co-infected with Lyme.
Thanks, everyone, for being so nice to an 'off boarder' who none of you knew a month ago! ;-)
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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Boomerang
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Thanks to you!! I was checking out the cpn board again last night. Good info on there!
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timaca
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MacKintosh~
Thanks for your continued kindness towards us here at Lymenet. You are a gem.
I do my best to remind people here that you really should get tested for Cpn and various viruses in addition to lyme to really know what you are infected with before beginning treatment. The symptoms are the same, for all that I mentioned...thus labs can help sort out what the root of the problem is.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Timaca, I agree on testing. I think, with Mayo Clinic now having good results with cpn testing (they may be using the Vanderbilt guidelines), we should see better testing for cpn spreading throughout the country. Since they're the 'gold standard' for treatment, hopefully their testing method/success will spread and we can count on better and more consistent results in the near future.
As for me, I'm going to have an entire battery of tests soon, just to have a clear picture to go forward with. I'll be weaning myself from antibiotics at my three year mark in October, unless one of the tests indicates I still need to be medicating. Cross your fingers!
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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How do you feel now compared to when you started??? Do you feel like you are in remission?
I may need to get tested for this also!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I don't know how to respond to 'remission', so I have to call it 'recovery'. When I'm done killing the cause of what the doctor called MS, I'm cured. Cause (cpn) killed = disease (MS) cured.
Mind you, this is no instant cure. I figure, at nearly 33 months of treatment, I still have at least six months of full-time treatment to go, then I taper off into next year, until I'm off antibiotics entirely. (My doctor and I agree that I'll switch out one antibiotic in a couple of months just to make sure I've hit the cpn with everything possible.)
To be subjective, I'd say I'm 98% there. No exhaustion, no left side weakness, no foot drag, no falls, no weird temperature fluctuations, no skewed sleep patterns and I sleep through most nights, no sudden 'dry mouth' or trouble swallowing, almost no facial flushing after exertion, ability to withstand heat and humidity, no muscle spasms, no lung congestion, only one 'cold' in three years, recovered decision-making ability, recovered short-term memory, recovering the ability to quickly access my vocabulary (not being able to tap my extensive vocabulary was super-frustrating). The 'foot buzz' is infrequent now, so I suppose it's diminishing over time.
I'm still hoping to recover the depth perception deficit that was caused by my optic neuritis bout in 2005, as well as the full feeling in one semi-numb toe. Still feels like a rubberband is wrapped around that toe. All good, as far as I'm concerned.
-------------------- The difference between what we do and what we are capable of doing would suffice to solve most of the world�s problems. Mohandas Gandhi Posts: 19 | From Chicago area | Registered: May 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
makintosh probably doesn't come here that much but if anyone knows how to reach them i am wondeing how they handled candida being on abx so long
i'm also wondering where makintosh did full battery of testing
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
lpkayak~ You will have a better time finding Makintosh on the Cpn website: www.cpnhelp.org
Best, Timaca ps...with regard to testing...I've had lots of testing done. Cpn can be tested at most any lab. I've had testing done for it at Focus Diagnostics lab and LabCorp.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I was on valcyte for 9 months. 
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