Hairy Update

Submitted by Michèle on Mon, 2007-07-23 04:56

Pulse 21 done and dusted... I had high hopes that they would get easier to cope with the longer they went on, but maybe this is not long enough. I think I have heard other say that the treatment seems to cycle round the body over and over until all is cleared up (we hope). This is what seems to be happening to me.

The pulse itself is still as nauseous as ever and the last one was followed by painful aftermaths, ie more gut pain, more foot burning and general aches and pains in joints and muscles, fluey reactions, and new bald patches. I have, over the past few months, occasionally got some new very small bald patches but after the last flagyllation I have developped a number of sore and itchy patches in a number of places and small handfuls of hair are falling out. I still have a better head of hair than I did this time last year and the older patches are growing new hair, so the process is ongoing.

It appears to me as if the longer the area has been affected by alopecia the longer the process of clearing the Cpn will go on and the clearing is not a once and forever process but gets addressed over and over again until it is cleared. The areas of my scalp which had been affected over the longest number of years is the top of it, and that is where most of the bald patches are still appearing. The area around the side of my head were practically hairless a year of so ago but this baldness had only happened in the past three years, and the hair in that area seem pretty stable now.

I get over the pulse in a couple of days, but the reactions in my scalp (and elsewhere) take a week or so to manifest and in the case of the baldness will take 4 to 6 months to repair. I'm explaining this with the hope that the very visual symptoms that I present will illustrate a process that might well be taking place in other tissue in other people also.

I'm still strong in my resolve to continue doing this even if at times I long for it to get easier....

 

Michele,  Yes, you are firm in your resolve, but sometimes the cheerleader needs a cheerleader.  The hair issue is an especially difficult one for a woman.  I've wondered sometimes how you manage it on a day to day basis...deciding to go out with or without a scarf, judging the current status with a mirror-to-mirror examination, fussing with your hair to maximize coverage.  We have all seen your images of different stages of recovery and fluctuations inre alopecia.  There wasn't one image that did not reflect a beautiful woman with a beautiful soul. 

You have so much on your plate, though, you may not pay much attention to the hair issue at all from day to day, particularly when you are in pain.  Michele, you will be rewarded for your steadiness in steering your family and yourself toward health, and, in fact, you are already receiving those rewards.  The slap is that the rewards are not as steady as you.  Very much like motherhood.  That's a huge reason why you have what it takes to endure through this "odd-yssey."

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Michele, we are with you on this up and down journey. It is interesting and not at all linear which is frustrating. As you say we ll have these things that seemingly get better then go round again.. Peace to all of us. marie On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini cont. since April '07, all supplements. "Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Thanks sisters, for your encourageent.  You are right Joyce I don't pay much attention to my hair on a day to day basis, but I recently dyed it more to the original colour of my younger years rather than the piebald effect I regained when I grew new hair.   So there is enough of it there to do something with, which is a luxury. 

My solution for bald patches has always been brazen it out and when the skin overtook the hair, what was left was shaved off... Now the small bald patches are a constant reminder of the progress my body is making even if at times I can't feel the progress...

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

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

Michelle, Sorry you are going through a rough round and hope it passes quickly. Interesting comment on how it cycles the body as I have notice it hitting different parts of my body as well. Hang in there! On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Good Job Michelle!

Keep at it girl, things are going the full gammit in the hair department.

For the moment, my loss seems to be tamed down!

You are awesome!  Keep us posted.

God Bless

R

CFIDS/ME, FMS, IBS, EBV, Cpn, Babesia, insomnia (sleep- melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, Doxy 200 mg day pm, Azith 250 mg M/W/Fday

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

You're very good at recording relevant things Michele, the cycling round at each pulse sometimes worries me but as soon as I start to think 'oh no, not that again' I try to remember that it's a good sign and it will be temporary, then I can forget about it.

You're not temporary though, you're constant ....so keep it up!

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.

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.

Michelle,

Your posts and updates are always so informative.  Thanks for taking the time to pave the way for so many!

Also, I agree with other posts - your stunning inner beauty more than outshines any small patches on your head!

Daisy 

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

Michelle- I really appreciate your observations, both of cycling as well as the length of time to see the scalp reactions after the pulse, and the longer time period of tissue regrowth. The last two helps me appreciate more deeply that, while we may experience the results of apoptosis within a week or two post-pulse, we may not see tissue and functional improvement for months in those same tissues. Hence the importance of watching for the long term trends and cycles. Your very visible evidence does give us a possible model for what's going on elsewhere. Thanks.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Ta everso, (thank you very much) for the encouragement, I appreciate it.   There have been times lately when I have had to deal with the negative feeling people were expressing about the CAP on the website and I have had to work very hard indeed on my positivity, added to that my poor husband's state of mind has made for a difficult few months.   Thankfully Ella is stable and settled at the moment so I am not worrying too much about her.

Just a small remark that may help my self esteem, my name has only one L in it.   It is the French spelling that my parents chose for me, and it should have a 'grave accent' on the first E to make it sound right.   But that is a bit of a bind to add each time, so I kind of ignore it when typing, (very lazy).   I only mention it now because the Michelle (double L) spelling seems to be catching, and a few more people are using it.... 

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

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

Just for you, Michèle!.........SarahImage removed. (I can do smileys as well)  An Itinerary in Light and Shadow   Stratton/Wheldon regime since August 2003, for aggressive secondary progressive MS.  Intermittent therapy after one year. 2007 still take this two weeks every three months. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2
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.

Thank you Sarah, just as good as a bunch of flowers any day.   Still can't use smileys.... or I would send one to you...   :o)

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

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

ooopsy, sorry about the misspell Michele

later gator

R

CFIDS/ME, FMS, IBS, EBV, Cpn, Babesia, insomnia (sleep- melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, Doxy 200 mg day pm, Azith 250 mg M/W/Fday

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Thanks Ruth...Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

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

Michele, your experience is an inspiration to me, and I love the clarity with which you describe it. I think the waxing and waning of symptoms is visible in your case because it impacts your hair whereas most of us just feel the cycling symptoms. If I remember correctly you have probably had Cpn most of your life. I've "only" had it for 10 or 15 years and it's not totally eradicated after one year of treatment, so I would imagine you can expect to need a year or two more of treatment. The good part is that you seem to be getting better all along. Good luck! On CAP since June 2006 for high blood pressure, nasal allergies, restless legs, memory and cognitive problems. Currently: Doxy 200 mg/day; Azith 250 mg 3X/wk; Flagyl pulses every three weeks 400 mg 3X/day for 5 days
On CAP from June 2006 to July 2008 for high blood pressure, nasal allergies, restless legs, memory and cognitive problems. On intermittent CAP from July 2008 to August 2009. Currently: using RIFE Machine and under treatment with a Naturopath, symptom free