Cpnhelp.org

Toddy, my sympathy extended.  Last Summer I needed to put on cotton gloves and wear an oversized thick cotton man's shirt to keep sun off my skin or your problem would be my problem.   I got the doxyi burn through tinted car glass driving on the interstate for 2 hours. My rx bottle said avoid sunlight on it initially it seems to have dropped off recently. Mine healed without scaring just took a few weeks.

Keep us posted a few folks may learn from your fun in the sun day.

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Tody,

Sorry to hear of your misery from the sun.

Before starting CAPi I was on another protocol which others here have also mentioned, where Vit D and sunlight was avoided. I had originally thought I had a problem with the sun's effects because it appeared I felt better when I avoided it although I never noticed any significant ill effects from it until I completely stayed indoors and in a darkened home for 2 weeks straight.

Anyway, my point is that I learned that the sun, even without the doxyi reaction you may be experiencing in part, will increase inflammationi in the body which will cause pain and discomfort and hormonal disturbances due to secondary porphyriai from CPni and other chronic infectionsi.

EDIT: This is not to minimize the emphasis of rash or redness of the skin due to doxy specifically but to cause some more ideas and thoughts due to sun and ill feelings and how to help with that.

I now know that I can handle more sun as I work on moderate increases in heat and sunlight along with keeping my Vit D levels up. They seem to go hand in hand. If you can, you may want to get your D level tested to see if you need more supplementation to make you less sun intolerant or even just slowly add extra Vit D to your regime, according to the supplement guidelines on this site. And of course, in time, as you heal your CPn infection as you do the CAP you'll surely be less sensitive.

Another thought is where are you on your pulsing? The secondary porphyria symptoms may be increased now if you're in the midst of or in the aftermath of a pulse.

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Yep, that'll be the Doxyi. 5 minutes in the sun and I'm on fire. I now go out with long sleeves, a hat, sunglasses and if necessary, gloves. If I don't want to look a total idiot then I make sure I have pockets I can keep my hands in.

Sun block doesn't help.

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

hope you feel better soon!

epsom salt baths & calamine in addition to icing helped when I had my heated rash (which didn't happen because of the sun)

peace

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days

There is a running argument here as to how much of this is doxyi and how much porphyrins in the skin reacting to sunlight. I'm with the latter camp, as I noticed increased sun tolerance over the years on the CAPi despite still using doxy.

None of this helps your current misery, and I'm so sorry. You'll need a lot of sun protection for a while. Hang in there.

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Sorry Tody to hear of your suffering.   Ella has recently had the same problem with a nasty exascerbation of her MSi symptoms some ten days later.   The debate goes on as to whether it is Doxyi or porphyrins that cause the problem, but it does get better eventually, but it would be wise to be cautious for a good long time in view of your experience.  

In Ella's case her hands and nose seem to the most vulnerable; that could be a support for the porphyrin in the skin theory, if porphyrins gather in the worst Cpni affected areas... (Not sure about that.   On two occasions her legs arm and face have been exposed to sustained sunshine and only hands and nose have been badly affected in spite of factor 50 sun barrier.   I think you need the barrier cream and shade to be safe in you are out in sunny conditions.

It takes a couple of weeks for the colour to disappear but the pain subsides in a few days.   Hope you feel better soon. 

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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 6.5 Wheldon CAP 16th March 2006

Same here, hands, nose and also forehead which is normally covered by a fringe but due to lack of a haircut I'd been pushing it away from my face. I may have had the problem elsewhere but I don't know as everything else was covered up.

The stinging lasted a couple of days. I found aftersun helped a bit. Aloe vera gel helped cool it for a very short time but any good after sun slapped on regularly seemed to help a little. The redness was there for what seemed like ages, probably 1 -2 weeks.

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

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My musing is that C. Pn. is possibly an occult situation in those individuals being treating with dox (for whatever reason indicated) who experience photo sensitivity reactions of varying intensity?  IMHOi.

Over time on Doxyi treatment bacterial loadi is decreased, sensitivity decreases.   This has happened in one year for me.   This year unshielded exposure to sun on my hands and forearms produced the faint hue of a tan only that was on an somewhat overcast day at noon.  I am fair and have burned easily most of my life.

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Just because there are warning labels of sun sensitivity doesn't necessarily mean this phenomenon of reddening skin and sun sensitivity is not partly produced by porphyrins IMHOi. I mean, there are many instances where there are warnings against "side effects" that seem to not exist or "go away" (as folks have indicated here) which would indicate that it's more of an effect of recovery or illness of someone rather than the actual complete effect of the medication itself.

For example, why or how would the sensitivity or the reaction of the sun "go away in time" with the treatment if the reaction was strictly produced by taking the doxyi? Me thinks that wouldn't and doesn't make sense! Anyway, as I said in a previous post on this thread, the sensitivity does improve in time, as you heal.

Someone commented on this thread about how they only got sensitive after taking doxy, not before, in the sun and someone else commented on that being the case as to doxy instigating the stir up of porphyrins coupled with the infection and I think that is the best explanation.

So, there is really no debate here... we are ALL in agreement, in a way. BTW, I have no reaction to minocycline mainly, IN LOTS OF SUNLIGHT AND HEAT but I do believe I would have some reaction or even the doxy reddening if I used the doxy as I think I still have plenty of secondary porphyriai and plenty of CPni left. So yes, I would think doxy would be more of a problem for me as well, so I'm not saying it's just the sun and SP but both together.

Yes, I think the doxy is probably creating more of the sunlight induced reactions coupled with the sun and therefore you can either stop taking the doxy to treat it, stay out of the sunlight as much as possible and IN TIME, yes, in time as many have indicated your reaction to sunlight coupled with doxy will improve as you eradicate the bacteria. I know my reactions have improved from the sun whether or not I'm on antibioticsi that warn against sun exposure, which, btw, there is also a warning on mino labels although it doesn't seem to be as severe of an issue as with doxy apparently.

Oh, wearing a hat helps immensely with sun sensitivity issues so it may also help in these cases with or without the doxy.  I recall somewhere where one of the D experts mentioned the top part of the head (the crown which is covered by most hats) produces ALOT of Vit D.  I could never really explain how or why but if I wore a hat even with my limbs exposed in the early days of sunbathing or in intense sunlight, I get alot less reaction from it.  

Just something for you all to consider if you want to be more cautious although many of you don't live in the desert or in the intense extreme heat and light of the equator but I think it's still a good idea to minimize the ill effects of the doxy and/or sun while you begin to heal.  Also, you may want to journal the times of year that cause this reddening to mark if it correlates more in the spring/summer equinox as I've hardly ever had an issue with the sun's effects during fall/winter months, only in spring/summer here, when the UV index is 10+

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month

Tody,

Louise had the red skin and she's a CFSi person so I don't think it's exclusive of MSers. I was alot more sun and light sensitive only when I lowered my Vit D and avoided all light for a time, something that many of us do when we don't feel well or especially those that live in more northern climates and in the winter months.

From what I've read somewhere in the literature (prob from this site somewhere) about secondary porphyriai symptoms, you don't have to be killing a darned thing to have them, just have the chronic infection from the CPni bacteria. The CPn themselves create the toxins resulting in symptoms if it's porphyrin related.

The only way to really tell I would imagine is as you progress over time if you have less of these symptoms from light and heat, then one would probably assume the symptoms are in part or completely from secondary porphyria and not the doxyi.

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Time and experience is showing me that it is perhaps a good idea to rotate antibioticsi when on a CAPi - even within the same class.  Different strains, different body area penetrations, etc...

One possible solution for the photosensitivity issue with the tetracyclines would be to use Minocycline for the sun/fun/vacation months and doxycycline for the more indoor oriented months. 

Only downside is that Mino is little more expensive if you are self paying... but it's only for a few months each year if you could swing it.

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

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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

Heat intolerance isn't unique to MSi, but rather it is part of the cpni infection. I've had CFSi for a number of years - never had any heat intolerance issues - until I caught Cpn that is.  As soon as I caught Cpn I had *severe* heat intolerance. Could barely function when the temp went above 21 degrees. Spent the summers just trying to get through each day, spending most of my time in a stupor.

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Hunter: Don't think - experiment

Hi Tody,

Just in case you haven't thought of it, earlier in CAPi, I was out in the sun and ended up with an excruciating rash on one of my arms that I now believe probably was shingles.   I didn't really suspect it at the time, and it did go away for me after several weeks, but many of the images of shingles look very similar to what I had.    I believe the sunburn I got may have brought it on.

Hopefully this isn't the case for you, but I thought I'd mention it just in case.  Perhaps you should have your doc check it out if you suspect it might be.   Here are some images that might help:

Google Images:Shingles

Hang in there... 

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Treatment for Rosaceai

• CAPi:  01/06 - 07/07
• High-Dose Vit D3, NACi & FIRi Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month