introduction and inquiry about topicals

Hello, and thank you for taking the time to read this post.

I was not able to locate information referencing contraindications to my Rx topicals.

Please pardon me if this is covered elsewhere.

I'll start with a bit about where I'm at and have been.

Mental

I'm a graphic designer who works from home. I have a happy homelife and a positive worklife. I believe that i am a healthy person, I just do not physically feel like one. I have long suspected that everything I experience is tied together, so am really happy to see this Web site. I want to live my life again: I want to go outside into the sunshine; ride a bike; shop in a store!



Physical

I am a 44 y/o femaie

Chronic generalized eczema since infancy

Unmanageable list of allergens: food and environmental

High potency steroid ointment usage, full coverage +/- 2x weekly, since age 2.

First adrenal insufficiency episode in late teens, load monitored since

Periodic doses of oral Prednisone

Rarely catch cold or flu

Only immunized once in infancy, and never again in school or when traveling abroad, due to reaction

Regularly have a prolonged mild fever with flu-like symptoms

Have chronic, generalized pain, where a touch feels like a hard blow

Skin bruises/bleeds easily, is very thin and heals slowly (due to topical steroid use)

Have been diagnosed with CFSi and FM at different periods of my life.

Trigeminal Neuralgia since early 20s, bilateral in 30s.

Have been diagnosed with MS, because MRI showed lesions on brain and I have TN

I do not believe I have MS and suspect lesions are due to inflammationi, same with the TN

6 abdominal surgeries to remove ovarian cysts and larger sized uterine fibroidsi in my 20s.

Chronic sinusitis (with maxillary sinus cysts)

My skins stings and burns at various (changing) parts of my body, shows no visible indication

I have (independent) hot spots under both sides of my jaw (but not in mirror locations). When triggered by something they will glow red and the redness will spread until the affected side of my face, or my entire face, is inflamed. The spot will be quite warm to the touch and clearly demarked, while the skin adjacent remains cool and clear.

My upper chest and arms are often red and hot, as are the tops of my legs

I have swollen lymph glands scattered throughout my body and occasionally my armpits will swell largely, same with below my ears which swell quickly and disappear just as quickly – determination: idiopathic.

In my late 30s I was told that all my physical problems were due to a somatoform disorder, it was all in my head. I immediately searched out psychiatric facility that conducted evaluations so I could be definitively assessed by a team of professionals. I thought that if this was all in my head then at least I could focus and work on healing that. Two weeks of testing and interviewing and I was told to believe myself, listen to my body, and find better doctor. While this went a long way for my self-confidence, I was no farther ahead. My trust in physicians was completely gone. I was just going to have to fix myself! I took the bull by the horns, moved to a sea-side location where there was minimal air pollution, began an organic lifestyle, worked with a naturopath, removed all my fillings, had the entire house redone in non-toxic, natural materials and came away feeling the same as I did going in. I then accepted that this would be my life forever and so made the necessary concessions permanent.

Then I got rosaceai. I am a regular blusher and flusher with more telangiectasia than normal skin colour on my entire face. The rosacea">i took away my last bit of willpower to face the world. I hid myself, and fell into a depression.

But, getting rosacea was serendipitous. Here's why:

I started Doxycycline -- It calmed my base redness when the Doxepin I’d used off and on for years was no longer helpful.

I learned about Red Light Therapy -- I found relief for my TN!! (this was by far the most limiting condition I've experienced), it works on my aching joints, it helps to clear intractable rashes, and, with regular use, I experience a lessening of facial sensitivity, reactivity and edema

I started using Metrocream – It works so well that I believe that I will never have to put steroid on my face again (just need to keep up with the RLT as well). And since it was working on my face I thought it would be helpful elsewhere too, so began twice-weekly (60gms/wk), full body applications of Metrocream mixed with vaseline with good results. I am not tolerant of creams in general but the vaseline dilution lessens irritation. I am left with soft and mostly clear skin. As a result of Metrocream I am able to substantially decrease my Clobetasol steroid use to once weekly, most weeks.


Diet

I go through periods of eating very well, almost vegan, then get overly busy at work and eat poorly. I have an unmanageable list of food allergies, and so am often eating things that will cause inflammation. Some items are carefully avoided though -- these create such uncomfortable or prolonged reactions that I am mindful even when I am weak-willed. There’s no ‘just a little bit.’

As I age the instances of oral allergy grows.

I experience terrible fatigue after most meals -- my blood sugar is good, it is my blood pressure that falls. In my 20-30s my pressure was 80/50 for extended periods and is generally now 90/60. As I age, I have reached the normal levels occasionally.

I have elevated good and bad cholesteroli, not tied to diet, and my ratio is acceptable. I have chronic GERDi with some minor splash scarring.

Diet is a complex and oftentimes confusing challenge of me. Sometimes I'll eat healthy -- faithfully -- and feel like crap and have inflammation reactions, other times I'll eat junk food and feel great. Overall though, a good diet does wonders for my stress tolerance, general well being, and waistline.


Meds

Topical steroid and metrocream.

I stopped my oral meds a few years ago. I was in a mental fog that I knew the drugs were causing -- especially the Gabapentin. While I am still in a mental haze the majority of time, it's different, and the drugs weren't really helping me anyway.

I tried to go completely drug-free but my sinuses are always really bad. I use OTC antihistamines and decongestants daily.

I take Advil some days and every night and sometimes I Hydroxyzine when I have intense prolonged itch (the older antihistamines work best in this instance).

I take a daily shot of 1000mcg cyanocobalamin, the SL methylcobalamin did not benefit me. Occasionally, I double the dose.

--

I think that's it. I didn't capture everything but it pretty much comes down to: I have allergies and chronic inflammation.

I am discussing the treatment protocol with my doctor tomorrow.

My two questions are regarding my topicals:

  1. Will my Metrocream interfere with/adversly affect my treatment?
  2. Will my steroid use with/adversly affect my treatment?

 



I hope someone gets through all this and is able to answer those questions.

Many thanks!

Corinna

Comments

Hi Corinna, Let us know how

Hi Corinna, Let us know how it goes with your MD's decision.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, FullTiniPulses  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
  • <

Hi Corinna, Sorry to hear

Hi Corinna,

Sorry to hear you are sick in bed.   The year before I started CAPi I spent several weeks in bed or on the couch too with "attacks" that I now realize were probably pretty heavy attacks of secondary porphyriai. I know it's not easy, but read as much as possible - the handbook, posts and blogs, start some of the supplementsi, restart the FIRi Sauna if possible, and keep looking for a doctor who is will to try treating you.

Hang in there, and keep us posted.   I hope you're up and around soon!

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-

Thanks Dan. I've been in bed

Thanks Dan.

I've been in bed the past 2 days (feels strange to admit that!) and have been reading through the blogs in between sleeps. I feel marginally better this afternoon and must be better for tomorrow morning!

I emailed my doctor Friday to follow up on her Wednesday team meeting. In this instance I suspect no news is bad news. Hopefully, I will have something confirmed tomorrow. I need to move forward. I need to find a doctor that will prescribe the protocal. I've received an email with some possibilities, and feel exhausted at the prospect of searching out a new doctor, again. I hate that I need them. I am tempted to try an online pharm for the ABXi.

Sorry, I'm feeling low today, and don't mean to moan. Many people have things much worse. I'm so self-sufficient in almost all ways and opening up, even to myself honestly, about what I am feeling is hard. But now that I have faced it I want to deal with it.

Best regards,
Corinna

Playing the waiting game. Hoping.

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Hi Corinna, I'm sure hoping

Hi Corinna,

I'm sure hoping your doctor decides to treat you as well!

If for some reason she doesn't want to do CAPi though, perhaps you can still convince her to monitor you while you start out on the protocol that Dr P (who treats many on the board for CFSi/FMSi, etc) has Skeecher and others on (at least to start). It's all OTC supplementsi so your doc wouldn't have to prescribe:

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

I do think it is important to have a good doc monitor you even on this alternative therapy. And, perhaps good results from high dose D3, NACi, FIRi Sauna (and some other supplementsi) would convince her of the potential for treating Cpn with the full antibiotic protocol (if you find it is even necessary).

Let's hope she goes for CAP as it is proven (and the high dose D3 treatment is still experimental), but if not, others (any myself) have reported great improvement on this other therapy too. So you do have options!

I've got my fingers crossed for you. Keep us posted...

 

 

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC 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-

Thank you Dan for the

Thank you Dan for the links!!  I have started my supplementsi and am reading, reading, reading. My doctor is also doing her homework on this and has indicated that she will present to her team (again) the day after tomorrow and let me know if a decision is made.  I do appreciate her approach, and the time she is taking looking into this, and if she choses to initiate this with me it will be a huge step for both of us. 

In the meantime I am playing the waiting game. Hoping.

Kind regards, Corinna 

NACi & Vit D3 & Melatonin">i. 05/08

 

 

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Hi Corinna, Zantac

Hi Corinna,

Zantac (Ranitidine) is a different H2  antagonist than Tagamet (Cimetidine), although they do both work as H2 antagonists:

davidson.edu: Histamine<

They both may help with some of our inflammatory reactions, but I believe Cimetidine is thought to help with symptoms of porphyriai by blocking P450 enzyme production:

Acute Intermittent Porphyria< 

 

And evidently, ranitidine is less effective at blocking P450 enzyme production so it MAY not work as effectively to counter porphyria:

Wikipedia: Ranitidine< 

 

 

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-

I have shaved my head in the

I have shaved my head in the past, but now that I have what I call a head of hair, I don't really want to do that again, at least not at the moment. I'll just have to manage with my short hair and do the larger patches. Might be a good experiement to just do some parts of my head and not others...

Yes it is OK to post links to other sites that have products you have found helpful. 

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.

years before I jumped in

years before I jumped in here, I joked that if my hair thinned & fell out with age, I was going to shave my head & get some art tatooed all over my bucket!

Welcome Corinna, you have a great mentor & there is tonnes of information & knowledge here on this sight.

Blessings for your wellness journey.

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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<

Red does metrocream come in

Red does metrocream come in different potencies?  Is there also a metrogel do you know.  Is Noritate another trade name for a metronidiazole topical formulation? 

  Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full TiniPulse# 5 pulse cycle day 10 today. Cholestyramine at BedtimeforPhorphor pia&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
  • <

Welcome Corinna As Michele

Welcome Corinna As Michele said, you have a great guide. I just stopped in to say hello. You do indeed sound like "one of us". You don't have to have MSi or even Rosecea or one of many others. Some things "we" just know or suspect, get here, and find the puzzle almost complete. Good luck.

 

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 50 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

Katman, Thank you for your

Katman, Thank you for your welcome.

Indeed I have had too many ill-fitting diagnosis put on me, and have been of the firm belief they were all wrong. Which according to at least one doctor then means it's in my head. :o)  How quickly we can throw away what we don't understand.

You are quite right! I read through the pages and it appears the puzzle does make a picture after all.  I know I should temper my excitement, but I just can't. I hope this is IT.

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Gosh Michele, I should have

Gosh Michele, I should have replied to your topical metroi questions earlier, but I thought you were on the right track.   Topical metros are used extensively in treating rosaceai, and they really do seem to counter much of the inflammatory reactions in our rosacea">i skin.   There are several different formulations of topical metro.   Metrocream is a good one.  If you find it too irritating, I found Noritate to be a little less so personally.  

I've never tried it on a hairloss site.  Can't wait to hear how it works for you as I've got a little natural yarmulke thing going on the top of my head which, btw, seems to be resolving quite a bit with FIRi sauna.  I also have hairloss at my ankles that seems to be resolving with treatment too...

On Combined Antibiotic Protocol for Cpni in Rosacea 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-

Corinna, Now that you've

Corinna,

Now that you've joined the ranks of the Inflamous, don't miss also the new page Michele has put together on Reactions and Remedies< to get a good feel for the reactions that are associated with the Secondary Porphyriai, Increased Cytokinesi and Endotoxini associated with a Cpni infection (and treatment).    It's do important to understand these reactions so  that 1) you can start counter measures now and gain improvement in some of your current symptoms, 2) you don't get freaked out by increased levels of them and quit during treatment, and 3) you prevent further harm to your body.

I've had probably all of the reactions on the list on and off over the last 30 years, perhaps with the exception of Painful Menses.  Although a couple of months ago, I may have had a little flair up of that too as per my co-workers!  Smile

In early treatment I now realize that I let secondary porphyria symptoms get the best of me.   Had I understood how EXTREMELY important it is to counter them, I believe I would have avoided much of the negative reactions I had at the time.

Let us know how your doctor visit goes.   Also, don't miss Skeecher's (from the R boards too) blog:

Rosacea and my treatment<

Big hugs back at you... 

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-

Cheers to the Inflamous

Cheers to the Inflamous bunch that make up this board! :o)

Red, thank you for the links. Michele, thank you for putting that together -- and from what I am gathering for the entire board in general.

I've just read about the Cimetidine and had a real AHA! moment. I live on H2 blockers, and take one immediately when (I realize that) I am having an unexplained, sudden anxiety and other non-stomach related reasons. Nine times our of 10 it works like a charm and very quickly. I think of H2 blockers as my little miracle workers. I use Zantac, is that different than Cimetidine?

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Hi Corinna, Welcome, your

Hi Corinna, Welcome, your story sound typical of someone suffering from a Cpni infection.   We don't all have to same symptoms but we all have a collection of them that all make sense when you understand a bit more about this nasty little bug... 

You could not have a better guide than Red, he knows his stuff and has made significant progress with this treatment.   He gives me hope that my alopecia">i and my IBSi will one day be a thing of the past.

One thing I learnt from you is the effectiveness of Metrocream, a couple of people have urged me to put some on my scalp.   It is such a messy business putting cream on your scalp that I have resisted.... But no longer, I am going to have to give it a try and go to bed with a hair capi...

Michèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metro 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, I have shaved my

Michele,

I have shaved my head for better topical access and relief from scalp symptoms. I am not much of a seamstress but did sew myself up some cotton head wraps to wear when I have ointment or oils applied.  At night I just put extra (cotton) pillow cases over my pillow and let my scalp be free to the air.

Have you considered Red Light Therapy? This has made a positive impact in my quality of life -- I am astounded by it still.  There is an FDA approved device for hair growth stimulation, I do not know if this would be off benefit for alopecia">i though.

I hope I am okay posting a link to the site<.  I have tried many different RLT devices and recently purchased the nasal probe version from this company.

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Hi Corinna, Welcome! I

Hi Corinna,

Welcome! I love the line "I have allergies and chronic inflammationi". Add a "Hello my name is X" and it could be a great introduction for a Cpni Anonymous meeting!Smile

Gosh, I'm so glad to see you here. I knew you were dealing with a lot, but I had no idea of the total number of diffrent conditions you were dealing with. I think you're right to think that they are all somehow linked. I thought the same thing, and I'm lucky enough to now say I know mine were, because with treatment most have now decreased greatly or gone away altogether. For me, these included rosaceai & seb derm, chronic (5 day a week) cluster headaches, IBSi, increasing allergies, frequent odd fevers and flu-like illnesses, flushing from head to toe, edema from head to toe, thinned, very fragile skin, etc. On good days, I now have more energy than I've had since I was an early teenager (about when my cluster headaches started). In short, although I'm still a work in progress, I have my life back. Hopefully you'll find treatment does the same for you!

As for you questions, I can't see why Metrocream would interfere with treatment. It is just topical metronidazolei, one of the oral drugs used in CAPi. I doubt the topical steroid would interfere with treatment either, although you definitely need to wean off that stuff as soon as possible as you already know.

Since you have rosacea">i, and since Dr Stratton has mentioned to me a couple of times the possibility that rosaceans may have an excess amount of porphyrin buildup in our skin, you may want to read as much as possible about secondary porphyriai related to Cpn infection, and start counter measures ASAP. Start with the porphyria section in the handbook:

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

I've come to realize that many of my problems were directly related to the secondary porphyria associated with Cpn. Taking counter measures even before starting CAP may help give you some relief.   I've had problems with many of the absorbing agents (charcoal and the like) since they seem to dehydrate me and make my secondary porphyria worse, but I may be the odd duck here.   I've had better results with drinking lots of water (which I'm guessing you're already doing), eating a high starchy carb diet and avoiding porphyria trigger foods/drinks such as alcohol (OK, I have a couple glasses of red wine now and then), red meat and members of the cabbage family, and recently I've found FIRi Sauna to help immensely with the secondary porphyria.

Have you been able to use your FIR Sauna again?  I know you had trouble with it before... 

Good luck with your doctor tommorrow! Let us know how it goes...

 

Red (aka Dan)

 

On Combined Antibiotic Protocol for Cpn in Rosacea 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-

Hi Dan (big hugging emoticon

Hi Dan (big hugging emoticon here please!)

Thank you so much for your welcome. I could say that I am feeling cautiously optimistic, but the truth is I feel like a kid waiting to get out of bed on Christmas morning.

I've gleaned a bit about porphyriai from this thread< and a glimmer of light escaped from a forgotten corner of my brain. I was tested for porphyria a few years back when I had a bad spell of malabsorption, about the time they were also considering Carcinoid Syndrome. This is all so interesting.

There is so much to read, and it is well beyond my comprehension level but as I read on some dots are connecting and it is beginning to make sense.

I am embarrased to admit that I never did much detective work before I got rosaceai. I did not have the resources; the Internet is a life-saver in that regard. Before then I refused to think too much on it all -- I hate feeling powerless. All I was mostly concerned with was ensuring an adequate supply of cortisone. I'm a junky who would love to kick the 'habit'!

I am not yet using the FIRi sauna again, but plan to absolutely. I was starting to experience positive change so do still feel hopeful about that. It was quite likely that I pushed too far one time and it was over the next few sessions that the effect of that became noticable. I am redoing the room it is in and have incorporated it so that it has a permanent space.

Reading your list of conditions I am reminded of ones I did not list, ones that you experience, and I am uplifted with the recognition. I am not alone. There's hope! I have been feeling for a while now that getting rosacea">i may have been the best thing that ever happened to me. It lead me to the doorstep of forums populated with great minds, and great people. It's people like you, Dan, and the many other tireless contributors that make it possible to hope there could be a better life for people like me. Thanks for that. And, sorry if I'm making you blush -- it's bad for the rosacea!

I will continue to read and read and read, and will post how my consult goes with the doctor. It's a phone consult (did I mention that I hide from the world?), but she is open to my wacky ideas.

Best regards,

TP (Corinna)

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.