Rosacea and my treatment

Hello,

 

I was diagnosed with rosaceai in October 2006. Seemingly more significantly, I was diagnosed with Chronic Myelogenous Leukemia in June 2006. Today, my CML is in remission, but my rosacea">i continues to be a real bugger.

After having read Red's story as well as his posts on a couple rosacea boards, I decided to begin treating my rosacea (which has progressed to hot, red facial flushing, permanent facial redness; flushing chest, arms, legs and feet, and a red nose with continually thickening skin, kept smoothed by a micro-dermabrasion brush) as a symptom of a C. pneumoniae infection.

It seems to make sense: I had a really, really bad respitory infection in Nov/Dec. 2000, which was never treated with antibioticsi. The first signs of persistent redness began in 2003 on the bridge of my nose. In Late 2005 my nose began getting pink and my nasolabial folds got patches of red on them that flushed and burned. All that has spread to the rest of my body.

I get facial and sometimes flushing elsewhere after eating.

Since at least 2003 (when I began regularly taking my tempurature) I noticed my temp. was usually around 97.

Since Oct. 31 I've been taking 6000 IU of D3, 1800 mg of NACi, and 2 oz. of Flax Oil/ day. For the past 1.5 weeks, I've taking a daily 30 minutes FIR sauna (Infra Spa) at level 5).

I notice chills after the sauna and sometimes throughout the day.

I've made an appointment with Dr. Powell in Sacramento, CA. Does he treat flushing, buring, and rosacea symptoms like mine?

Any comments or advice on my treatments would help.

Thank you,

Skeech

Hi Skeech,

Welcome!   Glad to see you posting here too.     You'll be in very good hands with Dr P.   How far away is your appointment?

 

On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Welcome Skeech, glad to have you on board.   Its good to have a growing number of people not suffering from CFSi, MS etc... We know that Cpni causes all kinds of diseasesi and the more variety we have here the better case there will be for treating even people who don't have the high profile conditions such as MS.   Many of us have skin related conditions and and when we get better then there will be a good case to be made for Cpn being the culprit.

We just have to be patient. 

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.

Skeecher,

FYI, I'm not sure if you've already read Astrodiana's story of treatment for Cpni eliminating her rosaceai problems, but here it is if you haven't. I found it very encouraging to read when I was earlier in treatment:

http://www.cpnhelp.org/no_herx_ing_no_metronidaz <

She was one of the early patients treated for Cpn with an earlier protocol so don't let the antibioticsi she used confuse you.

If you're getting chills after using the sauna, you're likely experiencing die-off, and too much die-off can be hard to handle. If you notice symptoms (rosacea">i, fatigue, depression, aches and pains, etc) becoming intolerable, just back down in the amount of time you're in the sauna a bit.

How are you finding the sauna otherwise and related to your rosacea? Still ok?

 

 

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

 I'd echo Red's last remarks, especially as you have upped Vitamin Di which can likewise cause die-off. The combo of sauna (artificial fever) and D is actually quite potent. So you are already doing an antibacterial protocol even without the abxi. Welcome.

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 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

Hi Red,

 

It's about 2 hours away. I should be able to borrow a friend's car, so it won't be bad. I can't wait!

Skeech

Thanks for the link, Red. I read it, and it is very encouraging, as is your experience. It seems like things getting into full swing with my treatment. Today I noticed generalized aches in my arms and legs. The chills were more apparent and long lasting. Also, I've begun to have a mild (perhaps unrelated) respitory issues, but only my chest with a bit of dry cough.

I'll take these as signs that things are working. I'll y'all posted.

Skeech

You're welcome Skeecher.   "Glad" to hear treatment is now getting into full swing.    Be sure to read up on secondary porphyriai too and how best to help manage it (plenty of carbs and even glucose) since you may also be experiencing some of the effects of secondary porphyria with these symptoms...  

Hang in there...

On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Skeecher, Your respiratory symptoms are entirely consistent with Cpni.   It is after all a respiratory diseasei in the first place.   Quite a few of us have lung issues, asthmai, bronchitis etc.... So I'd say yes these are signs that things are happening.

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.

I got chills, sometimes horribly miserable chills with ice cold hands and feet, when I started the abx but haven't been in the sauna. I think it's just the abxi/die-off and it's aggravated by temperature changes. I know if I've been much more sensitive to the cold since starting abx and once I'm exposed to the cold it seems impossible to warm up for hours afterwards. Since it's winter in the NW I haven't really had the opportunity to see how getting hot would affect me. I've been on abx for about 6 weeks now and haven't had chills too much in the last couple weeks so it does get better.

Asthmai, chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 started Azithromycin 1000mg/week.

Hello,

 

Last night before and after a 30 minute sauna I was coughing very badly. I don't feel sick, necessarily. Either I've conjured up a latent pathogens in my respitory system or I've coincidently contracted a respitory infection. Michele has mentioned that my respitory symptoms are consistent with cpni. Mind you, I did not have this hacking cough before the sauna treatment. Are you saying that the treatment may have conjured this up?

Best,

Mark

  

Wecome Skeecher,  It will be interesting to follow your postings and progress.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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
  • <

Body Temp 36 deg.C or 97 deg.F 

I noted on the post by skeetch that he mentions his body temp is 97 degF (36 deg c for those gone all metric).

Is this a recognised factor significant in Cpni, or is it just a personal findings in illness sometimes.

I also have a body temp of 36.2 as normal, raising to circa 37.5 deg at worse and down to  34.8'ish, even when sweating.

 

Dar (UK): lowback & limb pain, GI probs from 2002. Dxi: chronic radiculopathies (MRI/Nerve), Lyme Borr (Igenix and LDR), etc.  EBV, Vit D ab,  ME/CFSi/FMSi, etc. Cpn by DFM. Doxyi ceased due to GI. New Protocol to start soon.

Dar (UK): Severe lowback & limb pain (distal), GI probs. Dxi: chronic radiculopathies (MRI/Nerve), Late Neuroi Lyme Borr (Igenix/LDR), etc.  EBV, Vit D ab,  ME/CFSi/FMSi, etc. Cpni by DFM. 600 mg NACi, 40 mg omeprazole. Trying to add Dox

 Low body temp is a common report from people with chronic infectionsi, chronic fatigue, & fibromyalgia. One of the reasons the FIRi sauna is used is to create artificial fever, which seems to kick in immunei system cells that don't function well at low body temp. 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 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

hey Skeech,

pre CAPi I used to jump in the sauna to keep me warm, crank up the temp & be in there for 30 minutes.  Post CAP I did the same thing & got HAMMERED with die off reactions.

Now, when I use the sauna, the temp is way down & my time in is 15 minutes max!!

Good luck in your journey!

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocycloprine, 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, 2-6-08 6th pulse 1 X 375 mg 5day

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<

Hi Skeecher,

I had a hacking cough much of the way through early treatment and then again when I started adding and then upping Vit D3. Haven't had it in many months now though. I believe it was from die-off in my case since corresponded to the level of treatment I was under. It could of course be due to the flu or something for you right now as it is going around.   Time will certainly tell for you...

Be careful about going too fast with the FIRi Sauna though. Remember this isn't a race...

 

 

On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

The coughing business:  I had a few very bad coughs/cold infections this winter, I put this down to my usual CPNi infection and the effects of the protocol.  I even noticed an additional kind of 'deepdown' lung-wheeze cough which I put down to the effects of CAPi.  And I hope much of this will pass in time ......

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.

Hi,

 

I went to the doctor yesterday to look into the cough. She said my lungs sound clear, a little nasal congestion. She gave me script strength robatussin and 3 days of 500mg azithromiacin. That latter is what I really wanted, not so much to take care of the cough, but just to dip my toe into the CAPi waters. Not much to say other than that my cough is pretty much gone. The chills still come en force after a sauna session. I appreciate the instant "results." After the sauna I get red, but my flushing usually isn't hot like it can be during the day. It's less than one month until my appt with Dr. Powell. I'll keep everyone posted. Just a side note: a gentleman who is treating his rosaceai with a harsh topical protocol by a Dr. in Ukraine is having good success. The topical apparently has a highly concentrated antibiotic in it. The patient recalls having no flushing and a pale face while in on a tour of military duty in Afghanistan. He was a rosacean prior to and after that tour. The only thing that I could notice that may have resulted in temporary remission while at war was the 100mg of daily doxycylene that was mandatory to prevent malaria. Seemingly he was on a less rigorous and incomplete CAP and it worked. How else could one explain a remission of rosacea when I'm sure triggers were abound: heat, stress, war. Whoa.

 

Best,

Skeech

P.S. Body temp remains at a steady 97.5. Doc says it's "normal." Hmmmm.

Hi everybody,

 

I just noticed that a planters wart that I've had on my right index finger since 2004 is resolving. In Jan. 2007 I had it burned off with a laser and through that year it grew back. I think the sauna is knocking back that virus.  

Skeecher, that observation is really interesting. Please let us know when it is gone and how long it takes to disappear. Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. 

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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
  • <

On March 25 I went to see Dr. Powell, and it was a great experience. He went through the life cycles of Cp, explained how it causes a myriad of problems, showed how it afffects certain essential cell processes, etc. He spent a good 40 minutes explaining things to me and how to treat this disease. I was really satisfied and felt like this guy is going to help me stop my facial (and overall body) flushing and burning.

He was thrilled that I was doing the 30 minute FIRi sauna and said that this was one of the best treatments to use for Cp. I continue to take 6000IU of D3, 1800mg of NACi, and 1-2 oz of Flax Oil daily. To this he's added:

Daily

200mg Plaquenil

200mcg  Folate">i (I take the full 800mcg because I end up wasted the pill if I cut it, even with a pill cutter)

1000 IU 2x Hydroxycobalamin

100mg Phosphatidyl Serine Complex

5mg Biotin 2x

He will be receiving soon blood work that he requested. I hae a follow up on May 6. 

I think primarily from the sauna, my face doesn't burn as much. I still flush, and my face is red all day. But, I feel much better with the burn down a few notches. I hope that I can beat this thing back all together.

Skeech

Hi Skeech,

Glad your appointment with Dr P went well, although I figured it would. He sounds like a great guy...    And I'm glad to hear your facial burning is better.   Odd that the FIRi sauna seems to have this effect, huh?

Did Dr P explain what he expects the other supplementsi to do by any chance?

Hang in there. You're in great hands now...

On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

I think that I saw Dr. Powell on March 25. Here I am on April 21, and I've been hitting the sauna religiously for 30 minutes once (sometimes twice)/day. I've upped my D3 to 8000IU and NACi to 2400mg/day. I've also been taking the supplementsi he prescribed including Plaquenil, B12, Folic Acid">i, Biotin, and a couple others that I can't remember. He also me using 1cc of a topical compound that I put in the tops of my feet (where the skin is thin and can absorb easily into the system). Since the 25th real changes have taken place: #1 I don't flush as much, but when I do it's less intense. I can often eat a heavy meal without flushing. I don't get foot cramps like I used to get. My toe nails have turned purple (which I suspect is a result of detoxification), but that's slowly resolving.

My face is still red most of the day, but it stays cool longer. My hands are paling too with less frequent flushing. Given time, I'm confident that my facial redness with fade too. 

There's no doubt that his treatment is working.

What's more is that I feel better overall, with a certain sense of serenity. It's probably largely because I don't anxious about flushing in certain situations. Of course, the overall benefits of killing cpni is the primary factor as to why I feel better.

Anyway, good luck to all, and I will keep folks posted about future progress or setbacks.

Best,

Skeech 

Excellent news, Skeech!     Continued great luck! 

On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Good to hear of your progress Skeetcher, long may it continue.

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.

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