A Window on Cpn

A Window on Cpni

For thirty years now, I have been asking what ails my scalp and suddenly I seem to be getting some answers.

I am not going to write a scientific paper, it’s not my forte. What I am good at though is observation and this is what I am going to record here. I will venture to make some hypothesis or extrapolations from observing what is happening to my scalp to see if it can serve as a model for what may be happening inside my body. In other words is what is happening on my head a reflection of what is happening inside?

Alopeciai areata is a type of baldness that affects both men and women. It manifests first as bald patches of different sizes that may grow large enough to result in complete baldness, it is characterised by its relapsing remitting nature. There is some evidence that thyroid deficiencies might be a factor, but mostly the medical profession put it down to stress and auto-immunity.

Of course we know that Cpn is a cortisol loving beast and stress does induce the production of cortisol, so no surprise there. And Cpn could also be the culprit in thyroid problems and we all know from the evidence produced on this website that Cpn is implicated in what are classed as auto-immunei diseasesi.

The complete baldness has happened to me on two occasions, once after the birth of my second child and then more recently in my fifties.

1998 dark hair starting to fall out

It first started after the birth of my son, but disappeared completely during pregnancy only to return with a vengeance after Ella was born. This bears a similarity to the experience of women MS sufferers who often have a significant relapse after giving birth. After six years of complete baldness it slowly grew back to a complete pelage, and stayed fairly normal for 10 to 12 years, a long remission maybe. Then out it came again, with maybe the saving grace that any white hair I had, being made of stronger stuff, remained as a thin layer saving me from complete baldness. Whether this was related to stress (I was teaching at the time), Cpn (which of course is stress related) or dwindling hormones is debateable; maybe a combination of all three.


2002 not much dark hair left

 

2006 only white hair left


The way I understand it is thus: during pregnancy the immune systems is somewhat quieted to avoid foetal rejection, which could explain why my hair was blooming as well as the rest of me. But that was also the time when maybe Cpn was taking hold in my scalp, for when the cat is away the mice will play… Once the cat came back there was an almighty battle where fur flew and baldness resulted. Given time (6 years) and without the help of antibioticsi, it seems as though my immune system managed to reduce the Cpn load in my scalp enough to allow my hair to grow again. For ten years my immune system was in control, but slowly the Cpn gained ground, helped also by the stressing factor of teaching.

And then came the CAPi


Now comes the interesting bit: what has happened since I started the CAP.
Nothing changed during the initial phase of Doxycycline and Azithromycin, no sensations, no hair loss. But 20 minutes after taking the first Metronidazolei tablet, there was a tight sensation around my temples and the nape of my neck, roughly in the area where Caesar would have worn his laurels. Nothing more, no dramatic shedding of silver, no itchiness, no pain. This sensation lasted for a couple of days and then disappeared. It takes about 6 to 8 weeks for any sign of change in the scalp, so all I could do was wait. This sensation was repeated at each Metronidazole pulse on different parts of my scalp.

3 months into the CAP

After a couple of months I saw a hint of dark hair beginning to grow where Caesar’s crown would rest, and then around my own crown, so what everyone was saying was true, the CAP did make your hair grown again. But I’d also heard that it made your hair fall out, and sure enough I did start loosing more white hairs than usual but so long as the dark hair was growing I was not complaining.


About 4 months after starting the treatment I noticed some itching and tender spots on my scalp, these are the usual signs for me of a renewed attack of alopecia on my scalp. Of course I was concerned, but in other places the dark hair was still growing. A month later I notice that I had very small bald patches, maybe the size of a dime appearing in the middle of the crop of dark hair, where I had felt the tell tale signs earlier. These patches are a lot smaller than is usual for me when hair falls out and they seem to be self contained not spreading outward as was usual for me.

 

Patterns of regrowth

 




5 Month into the CAP with small bald patches

 

7 months into CAP

 

In Conclusion

This is all good news, but does it explain anything about Cpn? As stated earlier I am not a scientist and anything I extrapolate from these observations can only be conjecture. However, using the model provided by my scalp it might help me to understand what is going on inside me body.
There appears to be a general assault on the Cpn colonies, I have never seen one of these lesions but if my hair is a mirror of what is happening inside, these are circular and grow from a central point, expanding at the circumference, therefore getting larger and eventually merging into one to complete baldness. Places where my scalp has been injured at one point or another during my life seem to react differently to the rest of it. The hair grows back first in those places. Some areas of my scalp have been slow to grow back and some are revisited time and time again and others seem pretty stable.


Once the CAP started to take effect there seemed to be a general dying off of Cpn which resulted in a light growth of hair, later following more pulses the same areas were addressed again resulting in dying off in the centre of each patch, forming concentric patches of much smaller size.
So if similar things are happening inside my body, it may be very difficult to discern any changes for quite some time, the improvements might be so slight as to go unnoticed and as each area is revisited again and again, with consequential discomfort. It could even appear as if the condition is getting worse. There is no change in the way my scalp feels unless Cpn issues are being addressed, so equally it may be difficult to notice anything feeling better elsewhere. The recovery time for hair follicles is six to eight weeks in my experience, if this is the same for other tissue it could be difficult to discern any improvements for a few months.
After ten months of treatment, I have enough hair for my head to look fairly normal, there are still and number of areas where the hair has not regrown and areas where new hair has fallen out again, but the balance is on the side of regrowth. Maybe when my hair has regrown completely and there are no new patches appearing I may be able to say, other symptoms permitting, that the treatment is complete and I can then go onto intermittent therapy instead.

Michèle Findlay
February 2007
 
December 2008
 
 
 

This post is in

This post is in celebration of one year on the site, and ten months of treatment.   Thank you for your messages, I'm hoping that all these pictures will make sense when you read this.   It has taken me all day to get this on the site, I have lost it three times... I'm probably asking too much of our poor site, but I could not do without the illustrations.

I'm quite delighted with the result of the treatment and I've only got half a head of hair at the moment.   It is going to get better.

 

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAPi 16th March 2006 for RRMSi

Gosh, Michele, I could

Gosh, Michele, I could almost say you look better in the latest photo than the one ten years ago.  Hasn't the hair grown back quickly?  I hope the internal ectoderm is responding as quickly!.........Sarah
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

Excellent piece of work,

Excellent piece of work, Michele! I very much appreciate that you've told your story warts and all. Even in the face of progressive illness, some are simply not cut out to follow the rocky path and enter through the narrow gate. But for those who accept that the right way is never the easy way, there's no need to sugar-coat the signpost. Thank you for planting this signpost.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Michele, How good of you to

Michele, How good of you to post the progressive photos! Without them, the story might seem far less impressive than it actually is. What a perfect illustration of the treatment and recovery progress/process. Thank 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

Congratulations,

Congratulations, Michele! What an amazing documentation of the healing process. You look so healthy in your latest photo. I also saw more hair growth on the CAPi but the most noticeable thing was that I finally have some eyelashes. Before they were barely noticeable. And I agree with Sarah that the current photo seems the brightest and healthiest one of you. You look positively radiant! Keep up the good work, Raven CAP since 8-05 for Cpni and Mycoplasma P. for MS and/or CFSi.

Michele, Thanks for taking

Michele, Thanks for taking all the time to post the story - it is a great one and the pictures help tell the story. I think I told you my first babysitter and her sister both were born with this and their mother was told she would never have a child with hair due to genetic makeup of mom and dad. As they were born with no hair, do you know if this is a different type of Alopeciai? I would love to send this on to their mom, your story, if it is ok with you. I remember reading about alopecia being yet another auto immunei disease. I would take the sitter and my daughter to the park - I would use scooter and be hanging with my 14 year old babysitter and my 3-4 year old baby and wonder what people would think of this interesting "family". I am with Sarah and Raven, you look really good in the last picture - very healthy. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004

A stunning example, right

A stunning example, right there in black and, er... white. A truly amazing series of photos and a completely unexpected (i.e. not previously assigned to Cpni anywhere we know of) result. Thanks for your persistance in posting this. 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

Jim, can we put this

Jim, can we put this story in the PATIENT'S STORIES?

To answer some questions:there are several different types of alopeciai, apart from male pattern baldness. It is quite possible that there is a genetic element to alopecia, in the same way that there is possibly a genetic element to MS. Alopecia areata (my kind) is relapsing remitting like MS which may be why dermatologist are going to take some convincing that this may be caused by an infection. Some people with alopecia, over time, go on to the other kind of alopecia: Alopecia Totalis, complete baldness, and some people get Alopecia Totalis as a result of a severe shock.   Alopecia Totalis is usually irreversable.   But then no one has ever thought that Alopecia might be due to an infection...

I find is somewhat difficult to understand how someone could be categorical about a bald woman being bound to have bald children. As far as I know if there is a gene for Alopecia Totalis it would be surprising if it were dominent, or we might expect to see a lot more bald people around, so both parents would have to have the defective gene. It is possible of course to be born with Cpni and a genetic predisposition to Alopecia.   Please feel free to circulate this document in whichever way you feel would benefit anyone.

In my case although the hair looks fairly 'normal', I would say that there is still a long way to go before I can call it a full head of hair, and the new hair comes and goes. I think it appear like a spectacular recovery, it is very graphic... but under the surface a lot is still going on, which in a way is what everyone doing this treatment goes through... small repairs in other places in our bodies might not get noticed in the same way as hair but they are still going on.

The difference with this recovery as opposed to previous 'remissions, is that it is happening all over my head at once. In the past large areas of my head would be bald whilst other parts would be covered in hair. Once the hair had recovered in a certain area it tended to stay until the next relapse. The recovery was also very slow, the last time I lost my hair completely it took 6 years to return. This difference in the pattern of recovery is what convinces me that this is down to the CAPi.

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopecia, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi

Very interesting because it

Very interesting because it confirms my idea that CPni causes many more problems than one would at first suspect. I told one doctor that I do not have any more the skin allergy that I had experieced occasionally in the last few years but he did not seem to believe that it was connected to CPn (which I do believe).

Nino, A lot of doctors do

Nino, A lot of doctors do not realise that Cpni is a respiratory condition in the beginning but that later it can go to any part of the body where there are blood vessels.   This is a vascular diseasei, so any where the blood goes so does Cpn.  

Michele (UK) GFAi: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyli at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Great Work!You look

Great Work!

You look marvelous!

My best wishes to you.

With Christ in Faith

Ruth 

WELL DONE! WOW! "I don't

WELL DONE! WOW! "I don't believe it". A UK chuckle.

What a nice Christmas Present. Merry Christmas to all as well.

Hey, Curious that you use the words relapsing and remitting for the various phases of Alopeciai, it sounds familiar to the MSi/CPni flavours?

Rock On, Eriks

Thanks EriksMy daughter has

Thanks Eriks

My daughter has MSi so the words came easily and seemed appropriate as it does come and go and I did not know why until I learnt about Cpni.

Michele,  Any way that you

Michele,  Any way that you could include the pre-beauty salon and post-beauty salon photos?  Particularly the pre-haircut photo shows such voluputuous growth it is most astounding.  Your age  by appearance decreased at least 20 years or more!

Louise

Ah, holiday red! I LOVE it!

Ah, holiday red! I LOVE it! Michele, I'm SO happy this is all going well for you!

Wow, it is unbelieavable,

Wow, it is unbelieavable, Michel! Congratulation to such success.

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