MediTest
27 Apr 2018
Author
Kristin V
Title

Cpn infection in children?

Body

I'd love it if I could get people's opinions on this...I have an 11 year old son.  About the same time I became really ill about 3.5 years ago with Lupus, my 11 year old son developed what I call "the never ending respiratory infection".  He complained of chest pain from it for at least a year.  He pediatrician said it was nothing to worry about.  I don't even think they ever prescribed antibiotics for it.  They said it was viral.  This was when he was 8.Since then, and maybe even before, my son has had a 'focus' problem at school.  It seemed to get worse and worse.  He would forget things

Comments

Hi Kristin,

I don't think that Cpn is fussy about how old people are.   I have no proof of course but, I suspect that my daughter Ella has been infected with Cpn for a very long time.   From the age of four she would faint at the drop of a hat, one time saying just before she fainted that she needed sugar.   How perceptive.   Later at the age of 11 she had a fit, which was never explained, she also suffers from hyperthyroidism and has done for a number of years.  There is some evidence that Cpn may be at the root of those problems too.

I certainly would talk to doctor Powell about him, I know that David Wheldon has treated young children very successfully.   Probably the shorter the period of infection the quicker the recovery.

All the best 

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

ILADS doctors have treated a lot of children for CFS-ish illness. That much info implies that the particular regimes they use carry no extremely gross short-to-mid-term risks that apply specially to children. Only formal studies, however, can empirically demonstrate finer degrees of risk/safety, because increased risks are not always obvious. For example, even though tobacco smoking is a very robust risk factor for lung cancer etc, it seems that this was not perfectly evident in the 1940s when smoking was often claimed to be benign (though for all I know a lot of people may already have known otherwise). Apparantly the dangers of smoking were not overwhelmingly clear to most doctors/people just by casually observing smokers.

Of course, not every medical intervention proceeds on the basis of profuse empirical long-term homodemographic safety data; far from it.

As for the benefits, they're potentially large, of course, anecdotally. I haven't run across any work on cognitive deficits in ADD or whatever (though I should say I am by no means well-read on those diagnoses) that suggests immunoactivation in the way the work of M Maes and others has suggested immunoactivation in depression. Nevertheless, cognitive deficit is so common in lupus, MS, and CFS, that it's hard not to assume that some sorts of immunoactivation are capable of engendering it, though the fine pathogenesis of cognitive deficit in these diseases is not well understood.

What's very interesting is that cognitive deficit has been shown to result from exogenous administration of proinflammatory cytokines to treat MS and hepatitis, in multiple pretty good quality studies by M Maes and others, though I don't recall whether these cog deficits were measured other than as a subjective impression. I haven't worked out whether or not these therapeutic uses lead to concentrations of cytokines that approximate those found naturally in diseases where cognitive deficit is common... the answer to that question determines just how much these findings imply about natural cognitive deficits.

Persons with long-lasting respiratory symptoms associated with seropositivity to (and detection of? I forget) Cpn were reported by Hammerschlag, with accounts of their treatment. That doesn't mean Cpn is the sole possible cause of persistant respiratory symptoms, of course. If you want to read it, I can email you the Hammerschlag paper if you email me.

I have a hell of a time keeping up in school myself. But back when I was actually sick (rather than just a little pokey), I attended intro cell bio at a university near my parents' house, and would literally take in 0% of the lecture on bad days, regaining my attention 100-200 times during the hour but holding it only a few seconds each time. So its obvious to me that the existence of cognitive deficit in CFS is 1000% kosher, though it has failed to be demonstrated by functional tests in some (certainly not all) studies. There are a lot of different cognitive faculties and I wonder if some groups simply might not be examining the ones that are most commonly impaired in CFS. I was told in lecture yestereday, interestingly, that Alzheimer's patients are impaired (vs controls) in rapidly coming up with names of animals, but normal in rapidly coming up with words that start with a given phoneme.

Kristin, we have some family friends the daughter of who became very ill at the age of 11, but this had been developing for some time previously.  It started with recurrent inner ear infections and chest infections which turned into asthma.  At the same time she developed cognitive problems which eventually became very severe.  She completely lost the ability to play her musical instruments.  Nobody had managed to unearth a cause for this, various reasons were put forward, one doctor, a paediatric psychiatrist, actually said that she enjoyed being ill and inferred that the mother was to blame.  By chance, some blood was sent to David's laboratory, alarm bells sounded and some was tested for CPn infection.  Very high titres were found by immunofluorescence.  She was treated and today is a perfectly normal, stroppy just fourteen year old.  She has regained all her cognitive losses and is playing in the third orchestra of the county youth orchestra, one of the best in the country.  His growth is far more likely to be stunted by not being treated.  This girl has nor been affected at all.  In fact, she is taller than her mother, who is admittedly shorter than you, and still growing.  So take heed of Micheles advice and talk to Mike Powell about him, even before you beat your hyperthyroidism to death!.......Sarah

 

An Itinerary in Light and Shadow

Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 

Kristin

You are not alone with your concerns about your kids . I have watched my kids develope more symptoms of this nasty disease for the last two years. It started one day with high fevers with my two youngest. I watched my youngest one night as she began having these strange muscle spasms. The muscles in her hands and feet would tighten up uncontrolably. From that night on they both developed jerky spasms of their limbs as they would fall asleep.They also complained of stomach pain , twitching eye, waking up at night in a panic, always to hot , looked pail, bad breath . My oldest of the three complained of chest pain . We had her to the doc and did a EKG but showed nothing .  I have since found that giving them B12 helps with the stomach pain and slowed alot of the other symptoms . My youngest now makes these strange faces and  has the spastic jerking during the day with symptoms worsening in the evening . The other still has the spatic jerking as he is falling asleep. The oldest of the three gets  major anxiety and depression if she does not take the B-12 . I find if I quit giving the two younger ones the B12 with in a week they are complaining of stomach pain . I also give them N- acetyl L-cysteine, calcium magnesium,Vit-d ,evening primrose oil, omega 3, Vit-C , and xango juice.

I had the doctors do a chlamydia seroligy test on all the kids. The two oldest came back with readings of IgG>1:25 for cpn . The youngest showed no levels . This is probably because cpn does not show up till puberty. I still cant seem to find two doctors that agree on the results of this test . One says it is an infection while the other says it is a past infection and the third says it means nothing at all. I believe they have a cpn infection simply by all the symptoms. This summer my youngest reacted horribly to mosquitoe bites and my oldest  had major welts to flee bites.

I truely believe we have a major epidemic of this going on and doctors need to start clueing  in as it is out of control!!!!!!!!!!

chuck

treating reiters syndrome, cronic fatigue, heart symptoms, myalgia symptoms, started with doxcycline 200mg and rifampin 300mg in jan 15/05. switched to doxy 200mg and azithromycin 250mg m.w.f in sept 06. after being on abx for two years now doctors dont t

 

Amazingly my GP seems to be clueing in at last, I was beginning to think it would never happen but my husband and I  saw her yesterday and she really did seem to be getting the message, she actually asked for the phone number of my private LLMD who also diagnosed me with  Cpn and she's going to contact him for a bit of advice!  

It seemed to me that she got a glimmer of understanding about just how lethal these infections can be, he always writes to her about any treatment he puts me on but it  takes tiiiiime as he's so busy. I've written to him about my problems with pophyria, which she knows little about, so hopefully he can put her straight.  Let's hope it means she'll realise it's important to treat children so that they don't get as ill as some of us had to.

Elinor from England, UK..... on Wheldon protocol for ME/CFS/lyme borreliosis , positive Cpn and borrelia.  Started  Aug 05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

I have a 7 year old that I also believe is infected.  After speaking with Dr. Stratton I started him on 500mg of NAC with 1000mg vitamin c.  His energy has improved since starting this last August.  I recently tried to give him 1000mg of nac on a Saturday and he was soo fatigued he just wanted to lay around all day.  I do feel better giving him this supplement as I have known for years something is wrong.  He used to complain in kindergarten that his brain was not working right.  Of course the teachers looked at me and smirked but I knew what was going on. 

I also start twitching at night just before I go to bed. 

doxy 200mg/day azith 10/05 Start tini 1/06 switching to flagyl 11/06 slowly since it seems to provide

people with most physical improvement  ldn 2004

dx ms

dx ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On mino 100mg/day biaxin 1000mg day and NAC 600mg. ldn 2.0mg.

Well whatd'ya know!  Interesting that I posted this topic a few days ago.  Today my 11 year old son, Quintin, woke up with a lot of pain in his lower right abdomen.  He had a fever, was clammy and nauseaus.  So I did my motherly duty and rushed him to the ER thinking he had appendicitis.  Well, interestingly, appendicitis wasn't diagnosed.  Instead he had Mesenteric Adenitis.  A swelling of the abdominal lymph nodes thought to be caused by infectious agents.  The ER doc said it would resolve on its on and sent me home.  But I'm not convinced.  I mean - if a kid has an abdomen full of swollen lymph nodes - don't ya think they'd do something?  At least look for underlying disease?  Well, this kid is done!  If I have to get a plane to find someone to treat him (if Dr. Powell doesn't do children) I will.  Enough is enough!

I did some research and found that Mesenteric Adenitis can be associated with Cpn, or even Mycoplasma.  It's also associated with EBV.  Everything of which we have in the house.  It looks like I'll be adding him to my signature line next ;-)

Kristin

David and Kristin, Married Forever, on CAP for FM and CFS with Dr. P. Sacramento, CA

David and Kristin, Married Forever, on CAP for FM and CFS with Dr. P. Sacramento, CA

 

Kristin, I've had that swelling fo a long time now, never knew it was connected to Cpn though......makes you wonder what this thing DOESN'T do!  I can feel slight swelling most of the time but last year when it was very bad for a while, I think the lymph nodes must have been pressing on the sciatic nerve....the sciatica was as bad as I once had when pregnant....Elinor

Elinor from England, UK..... on Wheldon protocol for ME/CFS/lyme borreliosis , positive Cpn and borrelia.  Started  Aug 05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.