Last two pulses brought some renewed stiffness and pain in the muscles on the right side of my scalp. Then I had a skin irritation in the same area that began itching somewhat. I saw my dermatologist for my annual check up and she gave some topical cortisone cream for it. She couldn't figure out what caused it. I haven't tried the cream yet as I thought I would ask if anyone has had this problem.I am thinking it has to be related to Cpni [1] and dieoff. Good news is that spots on my face I thought might be pre-cancerous were not. So I did not have to go through the ordeal of having surgery on my face like I did in '06.
Bad news is that the redness I have on my nose and cheeks is rosaceai [2]. It's not extreme but mild. However, it explains why my new driver's license pic came out with such a reddish cast--that had me really puzzled. The camera they use is probably sensitive to red.So inflammationi [3] is still a big problem for me.
The dermatologist gave me a prescription for a retin-A topical. I have no idea if my skin will tolerate this. We also discussed a new laser she is getting in the Fall that is very mild and good for treating the conditions I have. I have been taking Fern Block (the fern that shields the skin from sun damage) and use a mineral based sun screen and mineral makeup over that. I haven't stopped going out in the sun but limit my exposure to 10 minutes between 10 and 2 with a hat and if I am going out for longer, use the mineral sunblock SPF 30.
Today we went sailing for three hours and with the Fern Block and mineral sunscreen I have no heat or redness at all.This is pretty amazing. As my Vitamin Di [4] levels normalized I was able to tolerate more sun but I would still have some reaction from a long exposure. I know I got some vitamin D because later in the afternoon, I had head ringing, chills and a little intestinal rumbling--endotoxini [5] signs for sure.
I am still waiting for my test results from Yasko's lab--it will probably be another 3-4 weeks before I receive them. All things considered, I have enough energy to workout on the treadmill (1 mile uphill), go to my drawing class, work in the studio and do chores around the house. Still sleeping well. Taking more Iodoral has nipped any viral oubreaks in the bud. I take up to 100 mgs if I feel those kind of symptoms coming on and it has been working. Usually, my daily dose is 50 mgs. Drinking green tea every day. I think those Egyptian researchers were correct in that it seems to amplify the antibioticsi [6]. Besides I have grown to love it.
Will post again when I get my test results.
Raven
CAPi [7] since 8-05 for Cpn and Mycoplasma P. for MS and/or CFSi [8]
Also EBVi [9] and HHV6
___________________________________________________________
Feeling 98% well and going for 100! Still testing + for Cpni [1] since June '08.CAPi [7] since 8-05 for Cpn and Mycoplasma P. for MSi [10] and/or CFSi [8]. Also EBVi [9] and HHV6
NACi [11], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [12] and Methylation supplementsi [13]i [13]
Links:
[1] http://www.cpnhelp.org/glossary/term/167
[2] http://www.cpnhelp.org/taxonomy/term/142
[3] http://www.cpnhelp.org/taxonomy/term/67
[4] http://www.cpnhelp.org/chlamydia_pneumoniae/vita
[5] http://www.cpnhelp.org/glossary/term/116
[6] http://www.cpnhelp.org/taxonomy/term/38
[7] http://www.cpnhelp.org/glossary/term/168
[8] http://www.cpnhelp.org/glossary/term/163
[9] http://www.cpnhelp.org/glossary/term/120
[10] http://www.cpnhelp.org/taxonomy/term/6
[11] http://www.cpnhelp.org/chlamydia_pneumoniae/supp
[12] http://www.cpnhelp.org/glossary/term/170
[13] http://www.cpnhelp.org/taxonomy/term/63
[14] http://www.cpnhelp.org/taxonomy/term/44
[15] http://www.cpnhelp.org/glossary/term/175
[16] http://www.cpnhelp.org/taxonomy/term/39
[17] http://www.cpnhelp.org/glossary/term/184
[18] http://www.cpnhelp.org/taxonomy/term/53
[19] http://www.cpnhelp.org/chlamydia_pneumoniae/sk_0
[20] http://rosacea-support.org/
[21] http://www.cpnhelp.org/glossary/term/162
[22] http://www.cpnhelp.org/glossary/term/171
[23] http://www.cpnhelp.org/taxonomy/term/64
[24] http://www.cpnhelp.org/taxonomy/term/58
[25] http://www.cpnhelp.org/glossary/term/177
[26] http://www.cpnhelp.org/taxonomy/term/42
[27] http://www.cpnhelp.org/glossary/term/182
[28] http://www.ncbi.nlm.nih.gov/pubmed/18595500?ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
[29] http://www.cpnhelp.org/taxonomy/term/125
[30] http://www.cpnhelp.org/taxonomy/term/57
[31] http://www.cpnhelp.org/taxonomy/term/28
[32] http://www.optimox.com/pics/Iodine/opt_Research_I.shtml
[33] http://www.drbrownstein.com/
Raven I have not heard any
___________________________________________________________
Louise CFSi [8],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [15] +fattyEndotoxins HS PRN, Wheldon CAPi [7] 6/07,all supps, Doxyi [16] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Raven,Wow, you play a full
Raven,
Wow, you play a full day. Glad to hear things went well at the derm's. How long did you take to ramp up to 50 or 100mg of Iodoral? It certainly seems to have helped you. I follow your progress/protocol closely as I have similar methylation issues.
Thanks! :)
___________________________________________________________
Wheldon Protocol for rrmsi [17] since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi [18]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qd for Babesia.
Metrocream has done wonders
Metrocream has done wonders for my rosaceai [2] (the metrogel formulation was too strong) it has good anti-inflammatory properties, but we all have different skin types and tolerances. I also use red light therapy which works to reduce inflammationi [3] on a superficial level and enhance the biological repair functions. Lasers results for rosaceai [19] are all over the board -- it's a crapshoot. I'd check out the rosacea forums/sites before committing to have a treatment, just so you know about the type and can have a real expectation. Best site for info is: http://rosacea-support.org/ [20]
Good luck.
___________________________________________________________
Corinna | GFAi [21]. Wheldon Protocol: 4–8/08. Can't kill the yeast.
Thanks Louise, I was
___________________________________________________________
Feeling 98% well and going for 100! Still testing + for Cpni [1] since June '08.CAPi [7] since 8-05 for Cpn and Mycoplasma P. for MSi [10] and/or CFSi [8]. Also EBVi [9] and HHV6 NACi [11], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [12] and Methylation supplementsi [13]
Raven, Did you resort to
Raven,
Did you resort to salt water treatment[1/4 tsp Celtic salt in cup of water] to deal with bromide detox? If so, did it help?
Did you start out with 50mg/day of Iodoral? I am only taking 12.5mg daily. Too afraid of detoxing.
___________________________________________________________
Wheldon Protocol for rrmsi [17] since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi [18]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qd for Babesia.
Raven and Corinna,
Raven and Corinna, Metrocream/gel (concentration may vary and the transport medium in a gel has more of an alcohol base verses a a cream), I I recently started useing both a progesterone cream and an estradiol gel Rx bioidentical hormones for menopause/sleep depth issues/and bone loss/replacement effects. So I do have one that is creambased and one that is gelbased and I was asked if the gel base caused me any problems, it has not.
I am personally thinking that metrogel/cream products kills bacterial causes of inflamation on the surface level as opposed to being "anti-inflamatory" such as a topical steroidal compound would work. Being a topically absorbed formulation of Flagyl (metronidazolei [14]) I just see that it must do the buggers in.
Interesting positive skin experience I have had this past weekend. A little background first for the discussion for those who never heard me write about my Doxyi [16] Rash/sunburn of the summer of 2007, last summer I drove south for 2.5 hours with the window closed and air cond. on. The car has lightly tinted glass and I did not think of any additional "barrier protection" from the sun, my face and hands and left side of my neck suffered. Blotchy bright red spots on the arms, difuse burnlike areas on the fingers and the back of my hands, over the bridge of my nose and cheeks and on my neck. These did not clear like a regular sunburn and took weeks to be gone an were tender to touch. I drove around for the remainder of the summer with cotton gloves and oversized thick cotton man's shirt that had sleeves that could be drawn down over my hands. I used and added to my collection of sunhats, as well as titanium oxide types of sunblock. Mostly I just tried to stay out of the sun and inside. And with the way I felt in general that was not really that hard.
So this year I have been more aware, always with the hat and not much time out in the open. Not as compulsive about the gloves and long sleeves but always take them with me when I go out in the car.
This weekend I got the yen to workside around the yard a bit outside, not planned, did do the hat but with the humidity I did not do any more protection and minutes turned into an hour or so, enough to get crispy even prior to CAPi [7]. I have in the past burned easily. Not so this time, this is a mayor difference from all of my life really, I have fair skin and hair. I had the wide brim hat, China style that is rather dome like and provides better protection, I had a thick teeshirt with sleeves to the elbows and a rather high neck and I had on shorts but my sport shoes had sox covered my feet. I got no burn on my legs either, this is amazing, almost seems related to CAP. One very small area of very light sunburn on my right elbow, posterior area and it is turning to tan (OK no one else sees it as tan but it is a tan for me and the tenderness was very minimal and is gone now in 2 days, and my arms and hands are "tan".
___________________________________________________________
Louise CFSi [8],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [15] +fattyEndotoxins HS PRN, Wheldon CAPi [7] 6/07,all supps, Doxyi [16] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
It is good to hear you are
It is good to hear you are doing so well after nearly three years of treatment. I am looking into Iodoral for Ella, so was pleased to learn about your experience with it.
Thanks Raven
___________________________________________________________
Michèle (UK) GFAi [21]: Wheldon CAPi [7] 1st May 2006. Daily Doxyi [16], Azi MWF, metroi [14] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [22] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Well, thanks everyone for
Well, thanks everyone for the links. Amazing what a little knowledge will do. I now think I have an overgrowth of mites--Demodex mites. I have read several articles about people catching a load of them from their animals.(The cats all sleep on the bed with us) And because we are remodeling, my husband and I are sharing a very small bathroom. The treatment that was talked about by several doctors that interests me is Tea Tree Oil. I have used this on my toes to prevent fungus but now I will be adding it to my shampoo to see if it does the trick. I am still waking up with itching on my scalp. Ivermectin was also mentioned as a treatment but Tea Tree Oil is handy so I will start with that. I also read that several cases of Rosaceai [2] cleared up when the mites are killed. Compromised immunei [23] systems are talked about as one reason for mite overgrowth. Will post if this works for me.
Michele, glad to hear you have ordered Iodoral for Ella. I swear by it. It has done so many good things for my body--from chasing away the Fibrocystic breast symptoms to giving me lots of energy to going up against the viral and bacterial infectionsi [24]. Has Ella ever had a complete thyroid panel?
Raven
CAPi [7] since 8-05 for Cpni [1] and Mycoplasma P. for MS and/or CFSi [8] Also EBVi [9] and HHV6
___________________________________________________________
Feeling 98% well and going for 100! Still testing + for Cpni [1] since June '08.CAPi [7] since 8-05 for Cpn and Mycoplasma P. for MSi [10] and/or CFSi [8]. Also EBVi [9] and HHV6 NACi [11], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [12] and Methylation supplementsi [13]
A very interesting
___________________________________________________________
FM dx 2002. Started 2008: NACi [11] 4/19 (2400 mg daily 7/21) Start list supplementsi [13] + Iodoral 12.5 mg. daily: 6/19 FIRi [25] sauna, 9/4 100 mg Minoi [26], 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
Oh, I also forgot to
Oh, I also forgot to mention this quote I copied for you in my readings.
Explains Frank Flowers, professor of dermatology at the Health Science Center: "There is a tenuous link [among] Demodex, acne rosaceai [2], and folliculitis. However, no skin disease in humans has been conclusively linked with these mites." Flowers indicates that one of the most effective treatments for these disorders is metronidazolei [14] cream. "The link between mites and hair loss and other skin conditions is not conclusive, but we do know it's a major problem for dogs," Butler adds. "If you have high revels of hormones, you're going to have high levels of mite reproduction because these anthropods obtain their steroids from the host."
So I thought it was interesing that this doctor thinks the metronidazole cream works best. Take care. MM
___________________________________________________________
FM dx 2002. Started 2008: NACi [11] 4/19 (2400 mg daily 7/21) Start list supplementsi [13] + Iodoral 12.5 mg. daily: 6/19 FIRi [25] sauna, 9/4 100 mg Minoi [26], 11/3 Azith - 12/1 MWF - 1/5 100 mg Mino
Raven, re thyroid
Raven, re thyroid panel. Things don't quite work in the same way over here as they do in the states, unless we visit a doctor on private health insurance and have the insurance pay for the tests we get, usually we don't get to see the results of blood tests.
Sometimes I am lucky with my doctor who will give me a copy of test results but usually if you want a copy you have to pay for it. So the short answer is that although Ella has her thyroid levels checked regularly it is only to check that she is taking the right level of thyroxine. We have however done the home test of applying tincture of iodine to her skin and watched in fade away in less than 24 hours, which appears to be a good indicator of low iodine intake.
We will give it a go and see how things progress.
I'm pleased you have found the solution to your strange skin eruptions.
___________________________________________________________
Michèle (UK) GFAi [21]: Wheldon CAPi [7] 1st May 2006. Daily Doxyi [16], Azi MWF, metroi [14] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [22] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Hi Raven,Sorry to hear of
Hi Raven,
Sorry to hear of the new diagnosis! While we all react to things differently, many with rosaceai [2] find that topicals such as tea tree oil aggrevate their rosaceai [19] symptoms rather than make them better. It appears that skin barrier disruption is one of the more root problems found with rosacea, and anything that disrupts the barrier more is IMHOi [27] liable to make things worse. Just be careful.
Also, while higher number of mites have been associated with rosacea (everyone has mites), they are not the only pathogen that are associated with it:
[The assessment of bacterial flora and antibiotic-sensitivity of bacteria isolated from conjunctival sac, skin of the eyelids and inflammatory lesions in patients with acne vulgaris and rosacea] [28]
Could barrier disruption make rosacea skin a "playground" for a host of pathogens? A bonfire of the bacteria?
Are you flushing a lot? If so, check your supplementsi [13] too, as they could be making matters worse. Are you taking niacini [29]? B vitaminsi [30] have been known to aggrevate acne and most B vitamin made my skin worse. Some (admittedly probably only a few) of us rosaceans have salicylate sensitivities (probably related to their effects on Cpni [1] IMHO), but salicylates can worsen flushing. Flushing leads to more leaking inflammatory infiltrate and more barrier disruption, again, IMHO.
Also, don't count out secondary porphyriai [31] related effects on the skin. Again IMHO (but backed up by a conversation or two with Dr S), an excess of fat soluble porphyrins in the skin and the resultant reaction to sun and even fluorescent lighting only helps aggrevate barrier disruption. One note, the absorbing agents (charcoal, etc) seemed to make my skin issues worse. Carbs and glucose on the other hand help. Not sure if this is the case with all rosaceans, but someone posted a study suggesting this can be the case with some porphyrics (I think it make have been porphyria cutanea tarde, but I can't remember - it's on the site in one of the porphyria blogs)...
Hang in there...
___________________________________________________________
Treatment for Rosaceai [2]
Thanks, Red. Have you tried
___________________________________________________________
Feeling 98% well and going for 100! Still testing + for Cpni [1] since June '08.CAPi [7] since 8-05 for Cpn and Mycoplasma P. for MSi [10] and/or CFSi [8]. Also EBVi [9] and HHV6 NACi [11], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [12] and Methylation supplementsi [13]
Hi Raven,My response had
Hi Raven,
My response had too many links so it was flagged as spam...
See my pm instead...
___________________________________________________________
Treatment for Rosaceai [2]
Hopefully the "spam" will
___________________________________________________________
Louise CFSi [8],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [15] +fattyEndotoxins HS PRN, Wheldon CAPi [7] 6/07,all supps, Doxyi [16] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Hold you horses with the
Hold you horses with the IODORAL... iodine/iodide is very helpful - I agree - and specially when depressed might help incredibly, and it might increase your energy and help in various ways; but, yes there's a very big but, it comes with potassium and this combination when taken a little more than less, it starts affecting the heart, plus the levels of iodine or iodide that stay in the kidney and then are released might affect the thyroid in a not good way. When you are hypothyroid increasing the iodide feels good in your energy levels, but taking measures to protect the thyroid are more vital than anything! _It is just my opinion, personal idea; I'm not a Doctor, just read a lot about it and, because of my personal experience last year when I took drops of "liquid iodine" by Biotics Corporation. Iodine that seems to be good is the one found in "Kelp" the algae; and you can find these tables almost anywhere.
I recommend reading a lot before taking it!!!! Choices... as my friend MnMs says...
Maria
___________________________________________________________
God bless you all.
MariaPatri - living in a rollercoaster! (In Orlando, Fl).
Thyroiditis, sinus infection, heart, muscles and joints.
Maria, I have some
Maria, I have some excellent guidance from my doctor on just how much Iodoral to take. He is in touch with the doctors who are doing research on iodine and it's effect on various conditions. Iodoral seems to have done nothing but good for my body. It has sharpened my mind, given me energy, taken away any fibrocystic breast problems I had. It fights infection with bacteria and viruses. Iodine from kelp is not potent enough and may be contaminated by pollution. I took it for a while and it did nothing for me.
Here are a list of links to papers written by several doctors using iodine therapy:
http://www.optimox.com/pics/Iodine/opt_Research_I.shtml [32]
There are some people who cannot take it but the numbers are rather small.
If you read through some of the research you will see how vital iodine is to many tissues in the body.
There is also Dr. Brownstein's site:
I reccommend ordering his books on Salt and also iodine!! Real eye openers!!
http://www.drbrownstein.com/ [33]
Raven
___________________________________________________________
Feeling 98% well and going for 100! Still testing + for Cpni [1] since June '08.CAPi [7] since 8-05 for Cpn and Mycoplasma P. for MSi [10] and/or CFSi [8]. Also EBVi [9] and HHV6 NACi [11], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [12] and Methylation supplementsi [13]