Michele 'Fighting' Findlay reaches another milestone...

Another milestone has been reached, I've just finsihed my 30th pulse, and I have a few observations which I think are worth recording and communicating.

From the beginning I have been taking 200mg Doxycycline daily and 250mg Azithromycin MWF continuously and done a 5 day flagyli pulse every three weeks, so I would take 1200mg flagyl on MTWTF of one week and take the following week-end and the next two complete weeks off.

In that time the alopecia">i recovered to so such an extent that I need to go to the hairdresser once more. The hair still goes through phases of falling out, but the balance is on regrowth.

The sinusitis is improved but pulses continue to produce symptoms in that area and as I have had a sinus condition since my childhood this is not surprising. The good news is that since starting the treatment and after recovering from the initial snotty nose and runny eyes I have had nothing that you could call a cold or flu, not even a sore throat. Before treatment I would have a scratchy throat, burning tongue, face ache, ear ache, gum and tooth ache for 6 months every year, usually from November onwards. Being a teacher I was exposed to any bugs that was going and probably caught most of them.

Asthmai is so much better, no more night time coughing fits, occasional raspy breath in the evening when pulsing, followed by a couple of productive coughs but that is it. I no longer have problems breathing when exercising at the gym.

Joints continue to be affected although the areas that are affected vary from month to month, so maybe wrists and shoulders for a couple of months, then maybe hips and knees...

I suppose the things that have made little progress so far are the IBSi, the peripheral neuropathy in my feet and the bladder problems, although recently there have been some short periods when I have felt very nearly normal.

At around pulse 26 I felt that there had been little change in my condition over the past few pulses. Each pulse was much the same as the previous one, really unpleasant taste, nauseous, head in bucket feeling, chronic heartburn, sometime depression, consistently dark urine, could not wait to get to day 5. I did try on occasions to extend the pulse by a couple of days or sometime try to do more frequent pulses, but I was always knocked back by the extremely unpleasant taste and the heartburn problems. I tried cutting out the NACi at those time too, but to no avail. I was clearly stuck in a place where what I was taking was not progressing my condition enough to enable me to up my killing period.

This is when I decided to give Rifampicin a try and took 600mg a day instead of doxycycline. What a revelation... the next pulse was much more bearable, the awful taste was not so awful anymore, it was a bit difficult to tell what the urine was doing as Rifampicin does turn your urine (and your feaces) a nice red colour, but during this last pulse I ran out of Rifampicin (due to delays in the post) and for a couple of pulse days I noticed that my urnine was much less dark than was usual for me during a pulse.

Still a lot of activity in my sinuses and around my eyes, but some improvement in the IBS which has been a long time coming. The long and the short of it is that after about three months of Rifampicin I have been able to do a 14 day pulse easily and without too many unpleasant symptoms. Even six weeks ago this was not possible... So my future schedule is Rifampicin, Azithromycin and 14 days on 14 days off Flagyl and lets see how it goes. I'll keep you posted.

Comments

Thanks girlfriends for your

Thanks girlfriends for your support and encouragement.   Elinor it is the flagyl which had the unbearable taste, it is still unpleasant but I can cope now, whereas before I coud only just make it for 5 days.    I certainly did not go to the Gym for a good few months, not sure whether it was because I could not manage it physically.   In the beginning I did not have the time as I was looking after Ella, then Hamish, but later I think it had a lot to do with lack of motivation, recovery from the emotional trauma and all that weight I had put on... Now I am a bit more motivated to get going, to eat more sensibly, and when the drugs don't give me such a hard time it is easier to keep to the routine of three weekly visits to the gym.   The more you do it the easier it gets...

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Michelle, you are definitely

Michelle, you are definitely a trooper.  I see a very generous person here on line as well as a fabulous caregiver, while treating yourself too.  This is pretty amazing, you are amazing. 

Blessings for continued progress!

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Great to see how well you

Great to see how well you are doing Michele, and going to the gym too......didn't you say a while ago that you couldn't manage to do that?  Wonderful progress and you are so good at reporting it.

Was it the doxyi causing the bad taste for you? I've never heard of that before.  I'll be watching out for your reports of how you get on with rifampin  as now that I'm up to pulse 25 and 'coasting' a little it's something to be considered for my next step.

Keep on keeping on.

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

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Michele, I am so interested

Michele, I am so interested in your personal report.  It is so truely wonderful that you need regular haircuts these days.  Personally, my daughter recently had one patch of alopecia">i areata. Injection Treatment with a steroid solution immediately was effective.  I realized that that may be a short term solution. She had been ultrastessed with studies for the past 7 years. She is a new FNP provider and a bit sceptical that CPni is as prevelent as I seem to report,in so many conditions.  She is new to medicine and a young advanced practice nurse and is learning the rules as a new practitioner in a family practice.  I do believe she will develop a wider range of vision in time.  She has always been an independent thinker basically. 

She is glad for me but thinks that I think everything is CPn related with a slightly doubting eye. For example couldn't a strong reaction to Cipro rx be just a drug reaction?   She is young, has my mitochondrial DNA and from my biased opinion, is likely not to have escaped contact with CPn at our house.

  I hold all the stories here in my heart and mind (now that I can think, decide, and remember) and know that when the chips are down I will be able to cite yours and others stories to bring hope and some personal testimonies to my theories (they are seeing my informationas just another of my "things" these days).  

The same is true for those with Persistent Lyme disease that I know through support groups.  I am distancing myself from active involvement there after sharing and putting it out in specifics to them and getting little discussion and querry from the group.    I do believe will change as we all improve and some of us become personal examples of the effacacy of the Wheldon Protocol for a variety of "disease" catigories. 

For me this spells HOPE the most powerful emotion because it turns the tide from decline to improvement and changes the horizon towards future wellness.  

I would love to hear more from you Michele about yourself from your perspective.   Mostily because I an utterly interested in all of the presentations of Chlamydia Pneumoniae stealth bacterial infection in the body in additon to the CNSi presentations including GFA,generally falling aparti, which I do relate to in my infectionsi

Thank you Michele for caring for this community as you are also caring for yourself and your family in their recovering wellness from CPn infection.  And Instructing the fogged and overwhelmed in the operations and being available to coach on it's use.  It is an important function.

My hope is to share this information personally, in a meaningful and non-pushy way with those that I love and know, so that when they come to a point in their lives that the may need the information and treatment it will be available at that time and well as being understandably defined for reference and to keep updated with refinements, available, this is truely and A Class educational site. 

Louise

CPn Positive, Bb Positive

6/24/07WheldonCAPstartedDoxy&NACi<

11/3/07Roxi150mgBID added.

11/22/07#2Pulse Full 5 day Tinidazole500mgBID added.

11/27/07CholestyraminePostPulse/PorphoriaSymptoms Added.

01/01/08#3Pulse followed by 7 days of Cholestyramine starting on day 4 of pulse, stopped on day 8 day (took it for 7 nights) after three days off Cholestyramine mood began to sink, brainfog began to return, inertia and fatigue began to return break days

1/14/08Restarted Cholestyramine and decision made to take a continuous month of Cholestyramine at Bedtime For Fatigue, Brainfog, Mood challenges or Porphoria and Liposacaride protein endotoxinsi.  I will re-evaluate after another 30 days which will include Pulse #4 and the recovery period before taking an evaluative break at that time.  Next pulse #4 scheduled for January 21,2008, 6 days from now.  i look forward to it with interest and positive expectation for those elusive bursts of energy that some report and which I have experienced during both of my two full pulse.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Oh, I've gone all pink and

Oh, I've gone all pink and glowing from such lovely support from all you kind people.   We do what we do because we are who we are...

Love you all.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Michele - You are an

Michele - You are an amazing, courageous and generous person!  Congratulations on making progress for yourself and Ella.   Also, thank you for how generously you support so many others!

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/10/07.  Minoi 100 BIDi 9-1,  Roxy 300 BIDi 11-5, Rifampin 600mg QDi 10-15, Bactrim DS BID 11-3, Diflucan 100mg BID 11-30, Novantrone, Doxyi, Azith

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

Daisy on her own CAP 11/2012. 

30 pulses, Michele?!!! This

30 pulses, Michele?!!! This seems unbelievable since I remember when you had just started. This is so wonderful! And, that you are tolerating the Rifampin so well, too.

 

--Minai

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

 Michele- I've been

 Michele- I've been tracking your intrepid progress through your own capi, and certainl know what you mean about the potential for slowed progress after 26 pulses. The addition of rifampi seems to have been manageable for you, and made a diference in you pulses as well. Encouraging news to hear from a rifampin chicken. I'v e learned some things worth trying that may make it even easier, I'll note in a private mail. Carry on!

CAP for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Great to hear it Michele,

Great to hear it Michele, especially the sleep improvement. I have always associated good sleep with good health, so now I hope you'll be gaining health ever faster.

 

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Garcia, maybe a couple of

Garcia, maybe a couple of months earlier. It is difficult to say what would have happened.   I think I started because I felt I was stuck, if I had not felt that I would have been quite happy to continue with the doxyi.   Starting the Rif had a similar effect to when I started the doxy, a sudden feeling that something was happening and then some noticeable  fall back: pains in joints, more gi track pain, more hair loss, more sinus pain and then some gradual improvements in those areas.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxy, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Great update Michele - jam

Great update Michele - jam packed with useful info. Its very encouraging that Rifampicin has been so helpful to you. Knowing what you know now, would you have added it in earlier?

I'll definitely be keeping an eye on your progress. 

garcia. 

CFSi. Infected CPni 01-06. Started CAPi 03-07.
Currently: Roxi+Doxyi. 6 Pulses done. Welchol 2-4xday. Sauna every other day. D 7200IU

Hunter: Don't think - experiment

Thanks all for the

Thanks all for the encouragement.   Sarah thanks for the links I had visited Marie's site before and it is possible that hypnosis might help.  But I'll reserve it for further down the line.

I also have diverticulosis and internal hemeroids as well as the IBSi, the most severe pain happens in the night and wakes me up.    One of the things that has happened recently is that I sleep through more often and I no longer get constipated....  Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Congratulations

Congratulations Michele, Thanks for the update - the description of your flagyli pulses ditto mine - I can't wait until day 5. I can't imagine taking it for additional days. I am with Mack and KK2 as you are very strong taking care of everyone while going through treatment yourself - amazing. I am glad Rif is working for you. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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

Michele, this is sooo good

Michele, this is sooo good to see. Three of you.....there are several others in my family who would benefit from this, but it will not happen, even though they are happy for me. I am not surprised that you recognized the diverse symptoms and applied what is proving to be a far-reaching treatment. Certainly NONE of us expected what has happened here.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 48 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

  Michèle, its so good to

 
Michèle, its so good to see all your improvements in one place, in addition to the hair thing!  Like you, since starting treatment, over four years ago now, I have not had a cold or 'flu.  Sometimes I might feel like I am going down with something, but by the next morning, all gone.
  
What with all that you have had to deal with, with Hamish and Ella, you might be forgiven for forgetting about yourself, but like David treating me, you saw how Ella's treatment might help you as well.  Now both you and he are well on the way to unexpected good health.
  
Here< is something you might be interested to look into, with regards your IBS, since it isn't always caused by an infection.  Its Marie's new hypnotherapy site.  Click here< to here her talk about it.........Sarah
  
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Michelle, How wonderful!

Michelle, How wonderful! I am excited to hear that Rifampin is doing some good. I have even been considering it for myself. Mack is right, you are an amazing woman! I've said this before but it bears repeating....Hamish and Ella are very fortunate people! -kk2 :)

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.&nbsp Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; EDSSi was 6.5, now 5.5.  United States.

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

Congratulations! Your new

Congratulations! Your new schedule of meds should accelerate your journey toward complete recovery. It sounds like you are getting better and better. I admire your persistencei. On CAPi since June 2006 for high blood pressure">i, nasal allergies, restless legs, memory and cognitive problems. Currently: Doxyi 200 mg/day; Azith 250 mg 3X/wk; Flagyli pulses every three weeks 400 mg 3X/day for 5 days
On CAPi from June 2006 to July 2008 for high blood pressure">i, 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

Wow! It's so much easier to

Wow! It's so much easier to see the picture when you're not reporting tiny bits of info here and there! (The difference between looking at one square inch of an impressionistic painting, as opposed to viewing the whole thing at once.) Michele, in light of your extraordinary devotion to Hamish' and Ella's recoveries, it is amazing you've any energy left to fight this beast on your own. And prevail. I'm SO pleased 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

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