Slammed in the head!

As I write this today I am not fully recovered but will try my best to convey what my latest experience involved. Am writing this with my right eye closed as a matter of fact. So anyway ... what I want to write about in my blog today is reflective of years of chronic illness that I merely pushed off as hormonal induced migraines that we women had to bear in life. Of course ... I think I know better now. Not that hormones cannot play a role in this illness but that I know the true instigator I believe.

Last weekend was a joyous one. On the recommended supplementsi, etc. I had worked my way back to feeling so much better and stronger. My light intolerance was at a low after coming off the MPi in April. My darling hubby and I spent last weekend working on erecting our little greenhouse kit on one of the warmest most pleasant weekends thus far this summer. I had our patio umbrella up and rested in the shade of it between working in the sun as needed. Regardless I ended up with a slight sunburn on the tops of my feet and the back of my legs. This alarmed me but I seemed alright then.

By Sunday night I felt the shift. My mood shifted to the familiar "troll queen" when I knew I was headed into trouble. I bit my tongue and told my DH that I was overly tired and was best to avoid me. He is a wise man and complied. The first red flag symptom and one that I had thought buried long ago until again it erupted. A tooth with a root canal and crown began to have pain around it. Not a good sign but I basically ignored it at the time thinking maybe I had bit down too hard with it and flared it up from that or something? I know now I was not ready to admit the truth.

Monday and Tuesday I was progressively feeling worse. Then last night I was slammed with the worst pain in the right side of my head ... teeth, sinuses, eye and brain ... which always causes nausea for me as well. I had not had one of these full blown attacks in this particular familiar fashion for a very long time. On the MP the Benicar had kept this at bay but now what do I do? I am thinking ....

What I have learned here kicked in. I thought ... evidently I needed more moppers. As ridiculous as it seemed to me I put an entire roll of Smarties in my mouth. While laying in the dark on my bed holding my head I began sucking on them as hard as I could to get the juices flowing. After the first roll entered my system I honestly felt the pain go down a tiny bit. Enough to encourage me to do it again with a second roll of Smarties. I began to feel some more pressure release and then my nose began to plug up and then drip liquid like water. This dripping and sneezing continued for hours until at bedtime I was feeling much less pain and nausea. It was an intense battle for over four hours of excruciating pain and nausea but amazing to me just with the aid of Smarties I made it through it.

So I think if I learned anything from this experience ... I would venture to say that the sun exposure increased the vitamin Di in my body which made my immunei system kick in which caused Cpni secondary porphyriai. I also know I definitely have Cpn infection in all the same places I always have had it. These areas are either numb or burning and sore today like signal fires. Feeling beat up but smarter. Wink  So wondering ... have I got this figured out correctly? OR could it be the cryptic or RB form also bloomed so to speak? (heat shock proteini) OR maybe both?  

Many thanks again for all you folks do here. Blessings. MM

Comments

Oh Mac, please don't be too

Oh Mac, please don't be too impressed with me Embarassed ... in all honesty today when I wrote my blog the pain was manageable. No way could I have written that yesterday when I was in real agony.

All things worked out for my good when doc gave me the abxi for the UTIi. It is really helping my Cpni head symptoms. Except now I have brain fog. Can't keep my focus and do stupid stuff. Took me an extremely long time to write that blog. Made my eye hurt and had to take a nap afterward.

It really means a lot to me that you said "we'll help you through it". Thank you! It gives me more confidence knowing that.  Slainte  MM

Side note for my blog: My experiment. Right side sinus pain in temple, around eye and nose area. Applied Ketaconzale 2% cream to this area and received a measure of relief. MP had recommended it for facial area to decrease the production of 25D when going outdoors. Later they seem to not value it so much. But I always did better when I used it on my face. Now I realize the real reason. After reading somewhere on Cpn board Ketaconzale has anti-Cpn properties I was intrigued. I thought I would try an experiment to see if it would help my sinus pain today while in the house. Sometimes things work for other reasons than we think. Wink

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

My coasting time is up!

My coasting time is up! Here is the latest in my unwanted adventure.

Last entry I thought I was fighting strep throat but suddenly it vanished. Strange no doubt. So I did not go in for a throat culture. Next thing I know my sinusitis, rhinitis, dry eyes, headache, scalp sores flare up along with weird burning sensations in limbs.

Followed by I wake up in the middle of the night Tues. with major burning in my urethra. Then of course came the urgency and more burning. I am thinking .... is this UTIi or a type of porphyriai? More moppers please.

Then all of the above head pains increased to the point I wrapped myself into a cocoon of pain and could barely speak. You may well know this defense from extreme pain & nausea. I knew then I had to take action. I was in big trouble with more coming. Unacceptable!

Fortunately my primary physician took me in Friday afternoon. Tested me for UTIi which was positive. Put me on antibiotic for 5 days. One I had never taken. So it was with a bit of trepidation, but pushed back by pain, I swallowed my first capi of Cephalexin 500 mg. Followed by a big sneeze. Then I went to bed.

Amazing sensations began. The left side of my head had the worst of the pain this round. So as the antibiotic laden blood flowed through this area I began to feel the pressure relieve, the pain level drop and the mucus started running back of my throat. By 8 PM I was able to eat a bowl of oatmeal with raisin toast. Yay! Did I mention I had not ate since breakfast as I was too nauseated from the head pain? Yes, thank you folks... I did drink my Emergen C, take glucose tabs and drank Gleukos otherwise I would not have been able to drive to the clinic. Also the night before I had taken charcoal caps.

By the way, my blood pressure was 195/90 and heart rate was 80. Frown I was feeling pretty sick even after all the moppers.

Today I woke to pain in the right side of my head and right eye. Side note: Did someone once say gravity affected Cpni? I dare say it is evident with me ... which side did I sleep on last night ... the right. Days before it was the left side after purposefully sleeping on the left side. Interesting ey?

So this AM I took my new friend for another ride. The Cephalexin swallowed up the pressure and pain again. Only this time my chronic right hip pain has kicked in today. So I have sudden stabs of pain in it which actually is a nice change from head pain if you ask me.

I am having trouble focusing ... but what I wanted to say after all is this ... We believe the tenacious Cpn is striking back so we believe it is time to get the antibioticsi. It isn't a choice but a necessity. Of course I can't live through this kind of pain day after day and the only way out is to kill the invaders. The NAC, other supplementsi, FIR sauna did help wonderfully. They will continue aiding in the battle. But the Cpn are not being held in check any longer we believe. I cannot tolerate any sun at this time without porphyria. Perhaps the weekend we put the greenhouse kit together my 25D was raised enough to cause my immunei system to work more efficiently?

Experience is the best teacher. Glad I had your notes to figure things out. Thanks Cpn members for all you share. Blessings upon all of you.  MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hi MM, Sorry to hear of

Hi MM,

Sorry to hear of your UTIi but glad to see your intuition is still in check. Wink

I would totally agree that once you decide for yourself as in this case that "it's time," well, then, it's time.

You've prob seen my latest blog on Valcyte and unfortunately, the mail order package is on its way here so time for me to start that too, given my high viral titers which seem to have run a muck since testing previously years ago. Undecided

So here we are, working on increasing our immunei system function now, still, with clinical evidence of infection, when supposedly we were healing all of this time... I think not. Sealed

But at least we now know something more.  Knowledge is power.  

"First it gets real, then it gets different, then it gets really different!" SurprisedTongue outSmile

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

Don't believe everything you think!  

Hey Reenie ... good to hear

Hey Reenie ... good to hear from you. I just came in to update my blog... but saw your new thread entries... so curiosity got the better of me. Will comment later. Right now my eye is popping out of my head in more ways than one. Yell

Time for my nap. Praying for you while I do. Life is hard enough without these challenges. Warm hugs my friend. MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM - I am SO impressed you

MM - I am SO impressed you were able to write such a lengthy, intelligent story of your travails, despite the pain you're experiencing. Thank you for that.

I agree; you have no choice but to get off the fence now. We'll help you through it.

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

Strep throat has entered

Strep throat has entered the picture. DH just called from the clinic and his throat culture is positive. They said if I have a sore throat I should get a culture done too. They gave him an RX for penicillin he said.

The MPi taught not to use any of the penicillin group as they help create the cell wall deficient bacteria. But I have read here that amoxicillini can be used to kill the EBi form of Cpni. So am a bit confused.

Please, I think I need some help from folks here ... what best antibiotic to tell them now to use for strep throat for me? I tried the search engine but didn't find much help. Very much appreciate your insight ....   MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM, I had strep several

MM,

 

I had strep several times early on with the CAPi.  I recommend Amoxicillini.  If allergic, ask for Keflex.  Amox. covers strep and  has convenient twice daily dosing.  Keflex covers strep and potential secondary infectionsi as well, but must be taken 4X/day. 

 

However, I tend to get the secondary infection on top of the strep so I usually took Keflex.

 

Hope you're feeling better soon!

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.

Worried what Amoxicillini

Worried what Amoxicillini will do to me since I had a rough time with NACi. Maybe I have killed enough EB'si by now though so won't be bad experience. I hope.

 I guess Zithromax would be worse .... or would it? Just wondering cause I have a leftover Z-pak that is still good. Would save lots of bucks to use it but don't know if it would about kill me doing it. Undecided

Never heard of Keflex ... will go do a Google search on it.

Weighing my options tonight so am ready to take action tomorrow. Any further input from you folks in the meantime will be very much appreciated.

Thank you so kindly kitkat2 for sharing your info with me and good wishes.

Blessings. MM 

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM,Unless you are allergic

MM,

Unless you are allergic to it, I would not worry about the Amoxicillini

 

Aside from Penicillin, it is the drug of choice for strep.  I strongly doubt you will get any die-off issues with it.  I personally have no problem with Amoxicillin, but cannot tolerate the sulfa-group component of NACi.

 

If I were you, I would worry more about what untreated strep can do to your heart and kidneys....that is, if your throat culture is positive.

 

Maybe you'll get lucky and have a neg test.

Hope it all works out in your favor.   :)

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.

It was very good of you to

It was very good of you to help me once again Kitkat2. I will let you know what unfolds. Thank you very much for your helpful reply. It is good to hear that the amoxicillini didn't pose a problem for you.

I imagine I sound a bit paranoid to the folks here about antibiotic use but I have had a really rough time with them the past 3 1/2 years on the MPi so I am a bit gun shy. I realize it is said that the tiny doses was the problem but you may understand it is very hard to get past my experience. When the time comes to take the plunge at a full dose it will be a bit unnerving for me.

By the way, Louise ... I plan to get my D25 measured again this fall. I will post the result when I do. I will be very interested to see what I gain before winter comes. Now that my porphyriai has settled down again my light sensitivity is a little lower again. So at this point I think I can manage to sun bath 15-20 min a day without setting it off again.

I really appreciate your replies more than you can know. Thank you for taking time to read my blog and write to me. You ROCK!  MM

 

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM, really your statement,

MM, really your statement, "I have a new respect for porphyriai and hopefully a better understanding of it so I can avoid it. Sometimes I confess I have delusions when feeling good that I am more well than I am so I get careless. My thick headedness is good for some things but other times I am my own worst enemy."

That statement says so much and is in some way a part of the healing process in my opinion. Those that stay this course are amongst the thick headed for sure and to continue forward sure demands this at times.  I to am so appreciative of this internet community to share our worries and questions and get some good solid suggestions to feel better from other's examples of possibilities.  I do get careless from time to time, thinking porphoria must be mininmal at some point.

I have overdone it a few times this summer with the sun and my energy melted in the moment.  In the past I would have never thought that Vit D would have had anything at all to do with my instant fatigue as a result of porphoria from die off.  I have been aware of the effect for years just not even much of a clue for a theory.

I most certainly have been vit D deficient for years without having a clue and while supplementing at the then suggested dosing.

When will you be retested for your Vit D level again?  I am taking 4000 mg + per day now, I took 6000 mg for several months to get my levels up per my MD.

Louise

  • 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
  • <

Has it only been a week

Has it only been a week since I got slammed in the head? My perception of time is messed up ... seems like much longer. But tonight I am so relieved to be feeling a whole lot better. The Lysine did something for/to me I can't totally explain .... a whole lot of nerve reactions... burning, itching, nerve twitching, soreness, numb spots plus puffy sore fingers when I woke up this morning. Interesting results ... and continuing.....

I have been doing the FIRi sauna almost everyday this week. Hey ... guess what? I actually had some sweat under my breast area. Woo Hoo! Also my head and sinuses are feeling so much better. Pressure and mucus levels are decreasing. Now I can rock out with my Zune again. Life is sweet again! Feeling much more energy again ... Now I am telling myself ... "DO NOT OVERDO IT. LEARN THE LESSON YOU HAVE FAILED TIME AFTER TIME! and for heaven's sakes watch out about staying outdoors too long."  But no problem. It bothers me within a short time now. I walked my Poms today, rescued the fish in our patio pond and measured for the greenhouse benches DH will build for it. That was all I could stand dressed like a spy to boot. Bringing up my 25D to normal is an important part of my treatment so I will time myself in the sun so I don't make the recent mistake again. By trying to write my blog honestly about my experience I hope it will help someone else along the way with this same issue.

I have a new respect for porphyriai and hopefully a better understanding of it so I can avoid it. Sometimes I confess I have delusions when feeling good that I am more well than I am so I get careless. My thick headedness is good for some things but other times I am my own worst enemy. So thanks for reading my blog and making suggestions, ignoring my stupid & unanswerable questions, encouraging me and just being here. This board & members are so full of great information and vital to folks learning about this wicked sickness. Again I thank you for all you do. Blessings to you all ... MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM, All I can say is

MM,

All I can say is ditto!  Tongue outWinkSmile

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

Don't believe everything you think!  

Hi MM, Ruthless lives in

Hi MM,

Ruthless lives in Canada and if I recall in one of her posts, she travels somewhere much further north than here in Arizona that she calls AZ. Wink We'll have to wait for her to post again to find out what the abbreviation is for besides this hot dry state I live in! Cool  OTOH, if Ruth is going to be in Arizona I would surely love to meet her! 

Have you tried taking L-lysine for the scalp and head pain? It sounds suspiciously like the pain I get in my trigeminal nerve bundle and it's a type of herpes activation, in my experience and opinion which I can relieve with L-lysine and I also begin to feel better in other ways when I take it like I get a little reprieve from some of the symptoms the moppers also help with like fatigue.

I would say to try the lysine in addition to whatever else you're doing because most of us suffering from CFIDSi/FMSi have elevated herpes viral titers and the lysine helps your body deal with them.

The starting dose is 1000 mg 3/day and I take a maintenance dose of 500 mg 2/day when the pain subsides. I hope that helps.

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

Don't believe everything you think!  

Seems like a very

Seems like a very thoughtful suggestion to me in view of in 2001 I had a mild case of shingles which hastened my downhill spiral in the aftermath. These sores are much like the shingles come to think of it with all this nerve pain, numbing and tingling. I was focused on bacterial influence but very well could be viral. I did Tietelbaum's online short questionnaire last night to try to figure it out. It had suggested I had a bacterial infection because of the scalp sores so I was of that mind. But the way they react to tea tree/vit E oil is much like how shingles felt. Either that are my scalp is super sensitive now from FM pain receptors on high.

Also it suggested the following: Suboptimal adrenal function, candida/fungal overgrowth, suspected sleep apena, suspected antibiotic sensitive infection, suspected hypothyroidism based on symptoms, insomnia/disordered sleep, estrogen deficiency, NMH, RLS, low DHEAi, Essential fatty acid deficiency, chronic sinusitis, low iron, need to rule out testosterone deficiency, bowel infection (parasite, clostridium difficile, &/or Bacterial [SIBO] and UARS. I don't even know what the last two are.

Anyhoo... I will look in my boxes of supplementsi and see if I have any Lysine and try it out. Ya just never know what is in that box of chocolates Forest Gump fan.  Wink  Hope you feel better soon Reenie. 

 

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

The Lysine experiment was

The Lysine experiment was interesting Reenie. The one capi I took this morning aggravated my symptoms within a couple hours. The sinus/head inflammationi increased dramatically and a bad headache followed this time on the left side. The right side is still numbish. I can hear my head cracking inside at times. So after sucking on Smarties I chugged a Gleukos 16 oz drink for porphyriai. This began post nasal drip followed along with bronchial type productive cough. Sheesh. Seems like my head symptoms are always followed by mucus. I assume that is indicative of Cpni infection. My sinuses are bothering me a lot now at night and early morning ... pressure with mild pain. I haven't had it this bad since pre MP and first year or two. This afternoon I had heart area stab of pain too. Plus afternoon fatigue. Feels like I am back at square one. This porphyria business is much more involved than I ever imagined to be sure. I can only wonder what it will be like when I start antibioticsi which apparently I should get on with soon ... right? Looks like my vacation is over unless I suddenly pull out of this. Fun while it lasted.  MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM, I was just reminiscing

MM,

I was just reminiscing as I was replying to a post and recall my NACi flu got really intense for awhile after it subsided.  I thought I was suffering from seasonal allergies.  I was a mess, a big mess, with itchy watery eyes, sneezing, runny nose, etc.

As I looked back I think it was as I began to get built up with the supplementsi and my immunei system was stronger again than it had been prior to the supplementsi and the sunbathing which raised my D level.  Maybe that's happening to you too?  Maybe you have to feel worse before you feel better.  

For me, the new NAC flu was shortlived.  It didn't last more than a few days, maybe a week.   

BTW, the abxi actually may make you feel better too once you begin to take them, for awhile, until they begin to work.  LOL  That will give you another little reprieve from symptoms.  

On a brighter note with the CAPi, at least we KNOW how to feel better and what to treat it with.  You just simply have to figure out what works for you.  I'm feeling MUCH better this evening.  I'm going to write it in my blog right now, HERE<Smile

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

Don't believe everything you think!  

Add to my blog ... numbish

Add to my blog ... numbish sensation in right temple, cheek & nose area continues. Interesting to note that left temple has had a smaller area of pain especially at night and when I rise from bed in the morning. Areas where scalp sores are also have this tingly numbish sensation today.

Left chest area soreness around heart and skipping heart beats today. Some pain in my left side ... spleen I am guessing. This has been going on for a week intermittently.

All of the above is added to my usual shoulder pain, hip pain, knee pain, other aches and pains as well ... here and there ... come & go.

My point in adding all of the above is ... that while my recent "head slam" was labeled as "migraine" or even the more accurate label in my opinion "porphyriai induced migraine" .... is to ask a stupid question....

Is it possible that although NACi is killing or has killed off the EBi form of Cpni. Perhaps it even stunned the RB & cryptic formi for a few weeks somehow. Could my increased symptoms continuing reflect the RB & cryptic form in action? If yes, could adding olive leaf extract or quercitin change it up for a short time? Maybe stun them again? if it were so.

Not ready to start antibioticsi yet so am trying to use things on hand to keep things in control. You may tell me just increase moppers but thought I'd ask a stupid question anyway. I have nothing to lose except pride.  Thanks. Blessings.  MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Yep. Reenie. I did think

Yep. Reenie. I did think she meant Arizona. LOL

MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Marrrr...velous darling of

Marrrr...velous darling of course! <wink> LOL

Actually I could use a trip to the beauty shop. But until my scalp sores heal I can't do it. The folly of last weekend made them erupt again so it will take some time to do. Am putting some Derma tea tree oil/vit E oil  I recently purchased on them hoping to speed it up the healing. Burns like hell fire for awhile then makes strange sensation in my scalp/head. Nerves maybe? (bugs twitching? LOL) Anyhoo... that seems to helping some. At least it takes away a lot of the soreness. I just hope I don't lose my hair follicles and end up with bald patches. Surprised

I am feeling somewhat better today ... thank you.  Tested the waters so to speak. Still do have extreme sensitivity to outdoor exposure so am staying indoors mostly. When I did venture out for 15 min. (to check up on the greenhouse project completed today by DH) it was cloudy with sun coming through at times. Even this short time irritated my scalp sores, eyes, sinuses, brain and now ears are ringing .... so I won't go out again today.

I am happy for you that you do enjoy the sun. I can appreciate that it can be a marvelous thing . After all ... without sun there would be no shade. Wink Be well ... Blessings.  MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM, I hope you are feeling

MM, I hope you are feeling better today & I am sure you look marvelous!

I read your reply above about the climate your ancestors were from.  My ancestors hailed from England, Ireland, Scotland & the other 1/2 is France.  Even so, I am a sun person.  Thankfully we have A/C in AZ & can go to the lake.  At times I am sensitive to the sun so I do cover up too.  But, if the skin says OK, then the skin is exposed to the heavanly warm glow from our sun for extra Vit D3.

peace

 

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<

Ruth, I THINK MM thinks

Ruth,

I THINK MM thinks you're going to go to ARIZONA, as in AZ but if I recall, you're going somewhere much further north than that, right??? Cool

 

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

Don't believe everything you think!  

I am overwhelmed by your

I am overwhelmed by your attention. Such loving sharing and caring is a rarity in life outside my own family. I treasure each of you for your thoughtful replies. Thank you so very much. You all ROCK!

The porphyriai induced migraine was the beginning of a cascade of myalgia effects throughout my body. As you mentioned Reenie the inflammationi did follow so I will cautiously take Ibuprofen today. I don't know how touchy my liver and gallbladder are at the moment but I will find out. LOL

I woke up today with a numb spot in my right temple that expands to my right sinus. It is slowly dissapating as the day goes on. My right eye has been terribly sensitive to light since the flare up so I have stayed away from my PC monitor (also turned down the bright) thus why I have been slow to respond here. Also my right shoulder is very achy again and my arm & elbow also affected making it more difficult to endure repeat tasks like typing.

In my initial blog entry I failed to mention a couple points that were interesting to me. I would note that besides the tooth flaring up initially on Sun. night I also had a sore and hard knot the size of a pea in the middle of my right armpit. It was gone by Wed. but I believe it was related to this event. The other point I failed to note here is on Sun. eve & night I experienced skipping heart beats for many hours. For me it was significant as it was the worst cardiac event I have experienced since before my coming off the MP. Not that it made me fearful, etc. just noting that it occurred.

(Quite right Jim.) I take charcoal every night between 1-3 AM when I wake up ritually. I also drink Emergen-C (thank you Loriyas) after I down my cal., mag., (do take mag. Tina but am afraid of niacin">i) tumeric, pro-biotic & NAC before I go to bed. (Yep Reenie I take tumeric) When in trouble also I drink a Emergen-C during the day. In the meanwhile I suck on Smarties throughout the day. I also have the diabetic glucose tablets in my purse so when I am out and feel out of sorts I can get a super dose of glucose. This has really been helpful many times for me.  I also have four bottles of Gleukos lemon lime drink in the refrigerator. It has glucose and electrolytes - no sucrose, no fructose, no stimulants. I forgot about it last weekend when I needed it. DUH! (note to Reenie ... this all ready mixed product doesn't taste bad in the lemon lime but is difficult to find it. Drugstore.com is where I ordered it from.)

You made me giggle ruthless1 when you said I was "a wonderful, smart patient". It is endearing to me that you saw me in that light when I am feeling quite the opposite of that! I do hope you have a wonderful time in AZ. I can't imagine how anyone could endure the heat there. I prefer the northern coastal climate of my ancestors. <wink>

Reenie ... I am still a bit confused about the FIRi sauna use. Meaning ... if it is the sweating to reduce toxins that would be helpful ... then I fail. I still don't sweat at 20 min. (start temp around 80 F degree with max temp 115 F degrees so far). The heat feels marvelous on my bum shoulder ... not at first while beginning sauna ... hurts worse... But toward end of session & afterward feels better. But then last night while sleeping after a session I woke up feeling rather poor but charcoal helped me. Then this morning everything seems to burn more hoping pain won't follow. So when does FIR sauna diminish myalgia versus cause more porphyria resulting in more mylagia? Does that question make sense? LOL

Thanks again everyone. Hope you all have a special weekend.

Blessings ... MM

 

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM, you are a wonderful,

MM, you are a wonderful, smart patient!  Sorry you had the visit from the Troll Queen & really happy you pulled out the moppers. 

I went through a horrible time in the 80s when my TMJD spiked with nastly pains.  Reading about your tooth ache brought that back to me!  OHHH I hope I don't have to revisit that experience.

When I was at my ME worst a few years back & prior I would get some hum dinger migraines.  At the time, I just called them bad headaches but the doc said, nope, those ones are migraines.  Since CAPi I haven't had a migraine.  I still get headaches though, but I know it is the CPni in the brain.  I was thinking the other day that with the improvement in my fog I have made, that would have been enough to have me all done with it!  But, it is still here.  does that make sense?

I am looking forward to AZ for a few weeks coming up in Sept. 

I wish you continued success with your wellness.

God Bless & God speed MM

peace

r

 

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<

Reenie,There is a non-flush

Reenie,

There is a non-flush form of niacin">i which can be taken in higher doses.  Maybe this is mute point since, as Jim K pointed out, niacin might aggravate the porphyriai

Tina

 Tina-MSi 37 years;EDSSi 4.5   1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.

 

Reenie,There is a non-flush

Reenie,

There is a non-flush form of niacin">i which can be taken in higher doses.  Maybe this is mute point since, as Jim K pointed out, niacin might aggravate the porphyriai

Tina

 Tina-MSi 37 years;EDSSi 4.5   1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.

 

MM, I was just realizing

MM,

I was just realizing one other thing for you that might be of help along with everyone else's good advice and your own correct observations.  Cool

I read somewhere where Dr Stratton suggests using 200 mg ibuprofen 2x/day for inflammationi.  Inflammation can also be triggered during die off so it might not all be secondary porphyriai and you might also want to try something to help with inflammation rather than having to resort to Benicar for that purpose alone.  

Also, don't forget the IR Sauna.  That helps with the detox too as you've discovered.  

I ordered Turmeric from Swanson's which is also anti inflammatory and I read that somewhere on this site but haven't used it yet.  

BTW, I'm only able to tolerate 100 mg of niacin">i 2x/day and I still get flushed on occasion by it so please be careful if you use niacin.  It does make one feel worse during a flushing episode and when I tried to increase the dose to 200 mg at one time I got extremely ill feeling and nauseous!  

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

Don't believe everything you think!  

Sunni- I think you got it

Sunni- I think you got it just spot on, and proved the issue yourself by your own experimenting. If it's porphyriai induced I'd not try the niacin">i, as niacin itself is anti-chlamydial and could thus worsen the secondary porphyriai. If you have sinus and facial area Cpni then die-off and porphyrins locally where the nerves are especially sensitive (a lot of cortical-sensory representation) can be "exquisite." Remember the Emergen-C and charcoal as well.

 

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 MM,This may or may not

Hi MM,

This may or may not be of any help to you.  Some people have found that non-flush niacin">i (a vasodilator) 500mg and magnesium (a calcium channel blocker)400mg a day will prevent migraines.  I don't know if it will prevent the kind that are caused by porphyrins but it might be worth a try.

Tina

 Tina-MSi 37 years;EDSSi 4.5   1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.

 

I get incredible headaches

I get incredible headaches too that I think are porphyriai also.  I have found that Emergen C helps some also.

Lori 

 
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin Di 50,000 IU weekly