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Carricol
Member in Phase 2
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Posted: Sat Jul 12th, 2008 18:23 |
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Carol,
It is probably best to use only coconut oil for cooking. Olive oil is extremely healthful but is not fully saturated. Consequently, it tends to oxidize and do other harmful things when exposed to light, heat, and oxygen. Best to buy extra virgin olive oil (first cold pressed) in a dark glass container. Then refridgerate after opening. It is ideal for all non-cooking uses.
Last edited on Sat Jul 12th, 2008 18:25 by Carricol
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Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
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Kas
Member in Phase 2
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Posted: Tue Jul 15th, 2008 22:20 |
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Is Canola oil OK for cooking? I have been using it and my D levels are as low as ever. I agree with John that the occasional bit of D in food is no big deal if your D levels are already very low. Of course, they may cause an unpleasant IP, and then you will know to avoid that food in future. I eat a fair amount of chips for their salt content and have never cut back on beef or chicken. The only thing I watch with avo, is its high potassium content, as on benicar you may tend to retain it and you don't want those levels getting too high.
As I take my beni four hourly during the day, I take my last one at 11pm, and can then sleep through until 7pm, which works well in my case, especially on weekends, when the alarm clock wakens me to take it and then I roll over and go back to sleep for another hour or so.
During my work day, I keep my beni in a pocekt and my eye on the clock for my next dose, and have become very used to dividing my day into four hourly parts!
____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Carricol
Member in Phase 2
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Posted: Wed Jul 16th, 2008 01:38 |
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Kas,
My opinion for whatever it is worth is that Canola Oil should not be used for cooking. I used to use it and quit sometime ago. First of all much if not most Canola Oil may be Geneticically Modified (GM) meaning that it would not be natural. We do not know what kind of long term problems may ultimately result from consuming GM foods. It is the most unsaturated of all oils. Accordingly, it is extremely vulnerable to oxidation. Most Canola Oil is not cold processed and is not packed in an opaque container. Accordingy, if not cold processed, and packaged in an opaque container it is already probably heavily oxidized if not rancid before you even get it. Failure to refridgerate after opening continues the oxidation process. Exposing to heat, light, and oxygen in the cooking process finishes the deterioration if there is any left at that point. AS previously indicated Coconut Oil avoids all of these problems because it is fully saturated. It does not matter that much what kind of container it comes in, and it does not require refridgeration. Recommend you use coconut oil for all cooking and either Olive oil (extra Virgin/First Cold pressed packaged in a dark container) or Macadamia oil for all non-cooking uses.
Last edited on Wed Jul 16th, 2008 01:41 by Carricol
____________________
Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
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cwylie1
Member in Phase 2
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Posted: Sat Aug 30th, 2008 23:43 |
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Speaking of herxing (weren't we?), the past week, I seem to have had a signif. decrease in herxing. I am in the middle of fighting the battle at work to receive medical accomodations. Until that happens, resistance has been generated by some of my colleagues and I have been accused of "disrupting the entire department". (I asked if I could close the miniblinds when others wanted the full blast of the sun shining in).
My fear drove me to worry that I was indeed receiving too much sun and as a result, a decrease in herxing. Cognitively, I had a few bad days but that was earlier in the week. The last 3 days were good for cognition and getting work done. Is that crazy or what? I have 3 good days in a row and I'm afraid the MP isn't working d/t too much sun. (sleep hasn't been good and obviously I have been emotional, aggressive, fearful...etc.)
See? I'm still frazzled over the mess of a week I had talking with my mgr, her manager, HR, a spiritual mentor and my husband over fear of getting too much sun.
How are you all doing with varying herxing, work accomodations and trying to work while doing the MP?
I look forward to hearing from you. Thx.
Carol (the neurotic one) 
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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Kas
Member in Phase 2
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Posted: Sun Aug 31st, 2008 00:46 |
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I think you will be fine if you are covered and creamed and are wearing whatever Noirs are fine to work in. I work in a large school and have to move around it all day, so access very bright areas constantly, not to mention some really sunlit rooms with no window coverings. If the light is too bright, I try and stay away from being directly in it, and I wear my 07's if necessary, indoors, but that rarely happens these days. I have not found my IP's to be any worse whilst working compared to being home in a mostly darkend environment at home in the summer, but everyone is different here.
Try not to become too hung up on the light issue- just do your best and you will still make ( perhaps slower) progress. I think we have to realise that if we are working on the MP, we are risking more light exposure and I guess we cannot expect everyone else to sit in a darkened environment all day, either. Perhaps you could arrange for a little dark corner for yourself, where you can spend most of your working hours?
Good luck and hang in there.
____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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cwylie1
Member in Phase 2
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Posted: Sun Aug 31st, 2008 01:07 |
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Thank you Kas,
I was glad to read your main teaching room had no windows. I think I would be doing ok with a situation like that. I have requested medical accomodations formally which needs definition before my company can determine the accomodations. A quiet little corner would be fine for me!
Thanks again,
Carol 
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1011 |
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Posted: Sun Aug 31st, 2008 01:16 |
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cwylie1 wrote: (sleep hasn't been good and obviously I have been emotional, aggressive, fearful...etc.)
All potential signs that you may be being affected by the amount of light exposure you are having, which is why you may either need additional accommodation OR work at slowing down your IP so that your sun flare is not so bad.
(I hope I am describing that correctly, and if not, surely a more knowledgable person will chime in.)
Good luck, Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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cwylie1
Member in Phase 2
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Posted: Sun Aug 31st, 2008 01:36 |
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Thank you eClaire,
That is what I was concerned about. I need to recheck through my symptom list to try to figure out what is really at play here.
Carol
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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John McDonald
Administrator
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Posted: Sun Aug 31st, 2008 02:32 |
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I seem to have had a signif. decrease in herxing.
Carol - And therein lies my own doom. Several times on phase-3 I thought I wasn't progressing quickly enough only to find out that the slightest increase in abx floored me. But more to the point, whilst I thought I wasn't herxing I was actually neuro-herxing. That one is particularly hard to detect in oneself. It is a bit like an alchoholic trying to figure out just how drunk he is. He and I tend to get it wrong. I would suggest that while you try to get the sense of this you may also want to try reducing an antibiotic just a little as part of your experimentation. Sometimes less is more.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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cwylie1
Member in Phase 2
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Posted: Sun Aug 31st, 2008 04:37 |
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Hello John and thanks for the info.
But Shoot!!!!! I just took my mino/beni bedtime dose!!! I had thought to extend the mino x 1 da. but forgot...wait a sec, when you say 'reduce' then, you probably mean to move back to the previous cycle dose ie; from 50 to 25 again for a few doses, yes? I can certainly do that. I am set to start Level 1 cycle 3 on Tues. I can move back to 25 mino and not increase to 75 quite yet and see if IP changes. In the meantime, I'll just have to stay in the shadows more at work.
I do think this past cycle has been more neuro-herxing than anything else. I'll go back and read my Ph2 papers again.  Also need to make my zinc-oxide lotion tomorrow and start wearing it at work.
Thanks and goodnight!
Carol
____________________
Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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Carricol
Member in Phase 2
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Posted: Sun Aug 31st, 2008 05:20 |
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| If herxing gets out of hand you may want to cut the dose back some for a few cycles. It s very powerful once the immune system gets fully activated. For me I had to cut all the way back before I could find a dose that I could live with. I have been in phase 2 for 6 months. For me, the level of abx in my system has more to do with your herxing than the mino.
____________________
Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
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John McDonald
Administrator
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Posted: Sun Aug 31st, 2008 20:06 |
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Carol,
I don't know if you need to move up or down in dose. I'm saying to fiddle with it a bit to find out. I was especially keen in phase 1 & 2 to move along, to keep increasing my abx. On phase 3 that turned out to be a potentially career and marriage wrecking strategy. And every now and then when I renew my abx prescription the caps are a little more full or less full than before, sometimes stronger or weaker. And my herxing just continues to evolve. For months my "intolerable herx" was all about a neuro response, mostly attention deficit. Now at the exact same dose I define my intolerable herx by renewed light sensitivity, something that hadn't bothered me this much for months and months. Sometimes I think that when the abx has picked off enough bacteria in one tissue then there is now enough abx chemical to go to work on another tissue, that somehow the amount of herxing is conserved but it moves from tissue to tissue, organ to organ. So today's 'just right' dose may not be right tomorrow. I may need more or less to just touch intolerable herxing. Then too, if I have a big presentation to make or an important customer to see or an important family event to make then my definition of intolerable herx changes that week and I have to ease up on the abx to meet that demand. I have learned to flexible and to be patient, I hope. Good luck at work. But I do assure you that it can be done.
john
____________________
RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1011 |
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Posted: Sun Aug 31st, 2008 20:54 |
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I want to reinforce what John has said about the recovery process seeming to take focus in different aspects of healing.
I think the body and its systems are infinitely wise. At one time, I bought the idea spread by modern medicine that my body's immune system was upregulated inappropriately. However, I came to see that thought as a form of aggression against myself and the intelligence of my body. I came to understand that my body was infinitely more wise than modern medicine's view of my body. (Which is also why I rejected high cholesterol medication; I understood that my body was/is doing what it could/can to keep me alive.)
My experience on the MP so far, aside from a myriad of IP, was a long period of heart IP, which then morphed into kidney IP (based on labs) with some heart IP here and there. My body's seeming choice to focus on my heart first and then my kidneys matched my intuition pre-MP that I had subclinical heart and kidney disease (subclinical only because the correct sort of testing was not available) and that it was likely my heart would kill me in short order--way before my kidneys had a chance to.
So recovery, as I see it, is a sort of dance--one where our bodies lead, not us. We were responsible for choosing the MP--for initiating the dance toward wellness--; however, once begun, the body leads (just as it has been attempting to help us all along against an often invisible foe). The MP teaches us that there are steps we might try in response to the lead of our bodies, and we'd be unwise to think we can be entirely in charge of what direction our bodies take in the healing process, this dance we've initiated. We would be wise to listen to the moderators and realize that as followers of this dance we are simply trying to influence the the direction and pace of the dance, and often we are only able to influence the pace. Sort of like dragging our feet when the one leading the dance gets moving too fast.
Claire
____________________
CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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cwylie1
Member in Phase 2
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Posted: Sun Aug 31st, 2008 22:15 |
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Thank you both so much for your input. I feel encouraged yet a bit overwhelmed at the same time. John, you have been able to continue to work, right?? I was criticized by my mgr last week for having increased distractable behaviors which mirror my ADD-ness. I know I have been able to produce more paperwork during this time, so I was quite surprised at her assessment of me during the exact time I have been on the MP. I am therefore, concerned about my ability to continue...fear rears its ugly head again.
eClaire, you're at home, right? Were you always at home with the MP or is this something you needed to do after starting the MP? I think I read you used to be a corporate attorney. I really enjoyed your analogy of the recovery dance and our bodies taking the lead. Very nice. I have read it a few times to take it all in. (I think my brain is a bit slow today)
I am a speech pathologist. I need to be on my cognitive toes all day long at work. Paperwork completion has always been a challenge, many times an impossible one. I know I have improved in my ability to produce the paperwork and the emotional effort to do so seems much less. However, I still am most likely needing add'l time in which to produce what non-ADD people can produce in less time. <sigh> I certainly have had hyperdistractable days over the past two weeks since starting ph2. I think, however, I have had more good days than bad.
But like you said, John, perceptions can be very misleading and having ADD, my perception of myself has been off many times.
At this time, I think a good plan would be to continue at the same mino level for another cycle to see if things improve and be quick to increase beni to q4h throughout the work day. I think it has helped me the times I have done that. I also attend a support group weekly and think that increasing my attendance to a few more times a week will help me keep better balanced emotionally.
Phew! It's hard being me, sometimes!
Thanks again for your concern and help,
Carol
Last edited on Mon Sep 1st, 2008 03:06 by cwylie1
____________________
Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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Knochen
Advocate
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Posted: Sun Aug 31st, 2008 22:47 |
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Do you have any diagnoses that would put you under the protective umbrella of the Americans With Disabilities Act? That might be a powerful weapon against management. Just a thought.
____________________
Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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John McDonald
Administrator
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Posted: Sun Aug 31st, 2008 22:52 |
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Carol - I never had ADD before phase-3 but it has been my dominant herx since. I don't get it every day and my first few months were dominated by other more ugly cognitive herxing but now I know first hand several different ways to have ADD. I recall days in which I diligently worked at my desk all bloody day but got little accomplished because I just couldn't prioritize my work. That is, I got a lot of trivial stuff done but didn't do the important stuff. On a few days I was mesmerized by the music from my radio and found concentration impossible. Frankly I drew on a lot of good will from a decade of good performance before starting phase-3.
My only solution for working and neuro-herxing is to manage my dose up and down for just barely tolerable work and family performance. That has made my progress agonizingly slow on phase-3 and it means that I have rarely worked at peak performance for the last 2 years. But I don't think I have been the poor employee that I was during my first 3 months of phase-3. In fairness, I didn't know how bad off I was and moreover during phases 1 & 2 those 3 months would have resolved my worst herxing. Well actually about 4 months did resolve the worst bits, but I had and have plenty of neuro herxing to go. I can work and herx, but it is a careful dance and I have disappointing days. Every now and then I get impatient and dose up, and then regret it almost right away. How many bad days can a worker have in a year? Not so many I think. I have also deliberately eschewed career advancement during this interval. So that way I have deliberately avoided extra pressure. It has been a punishing price to pay and it has rocked my self-confidence. But I hope henceforward to be sharp into my old age and that will be very good. I also plan to make up ground on my career at some point. At my current dosing I have finally had my neuro herxing abate to the point where various body herxing is much more annoying now. That may change when I dose up but for now I am enjoying some clear thinking.
I promise that it can be done, work and MP. But neuro-herxing isn't easy and it does take a careful, self critical dance.
I am perhaps excessively open and honest with my boss and colleagues. In your shoes I would tell my boss what I am doing and why. I would then tell boss how important this is to me and ask if I can do anything to make up for those days in which I perform poorly. I don't know. Every boss and every situation is different. I can't pretend to know how your workplace politics works best. I know if I were in your shoes I would be the first to make the office coffee and I would bring doughnuts and muffins often. Something like that.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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cwylie1
Member in Phase 2
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Posted: Sun Aug 31st, 2008 23:11 |
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 Yep! I'll be bringing in the Rice Krispie treats on Monday!! Good idea, John.
Carricol, thanks for your info. Right now, I don't really know if I'm coming or going with the IP. Last week was a difficult week emotionally so I don't know if it was just me and my ADD or actual IP making it more difficult. Hopefully, this next week will be better and I will be extra careful with the things I can control such as ZERO coffee intake (I keep slipping with that one), making sure I get adequate sleep, and preparing for work days the evenings before so I am able to start my day on an earlier and more organized beginning.
Knochen, thanks for your question. Yes, I have had an ADD Dx for many years and have tried various meds. Some have worked to some degree and of course some have caused me trouble. I was actually on SS Disability back in '97-'98 under the ADD Dx when in actuality my inability to work or function was d/t an oral progesterone med. When I stopped the hormone, I was able to return to work. During the time on the prog., I started having migraines on a monthly basis. These continued until I stopped the D foods in April in preparation for the MP. Imagine that!!!!
Thanks everyone for the discussion. I appreciate it very much. I don't feel quite as alone as I did earlier today, thanks to you all. 
Carol
Last edited on Mon Sep 1st, 2008 02:41 by cwylie1
____________________
Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1011 |
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Posted: Mon Sep 1st, 2008 04:16 |
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Hey Carol,
I was at home disabled for 3 years before starting the MP (and I should have been home 5 years given how I felt). I had ADD sxs from a very young age and did not get diagnosed with it (i.e., I did not seek diagnosis) until about 5 years before I had to leave work. I thought someone familiar with it could help me develop additional coping techniques because my ADD was beginning to interfere with my work. Oh, I still produced and my work was well respected, but I felt like my brain was torturing me, driving me insane. (Even so, I was compromised and I used various strategies in the last two years to help hide my growing inability to focus and work like I had in the past. I'm not proud of that; however, I was in denial about the increasing severity of my poor health and the fact that I was sliding at an extremely fast rate toward disability.)
I remember the couple days I took Ritalin (I couldn't keep taking it, as I couldn't sleep while on it) and discovered that I was able to carry on a single train of thought connected to one idea without any intrusions for about 20 minutes (and I only stopped after 20 minutes because I had concluded the train of thought). I felt like I was in heaven being able to think so clearly. (I reported this to a friend recently and she said, "You haven't always been able to do that?" Like this is what other people experience on a regular basis?) It was then when I realize that some folk out there must be self-medicating their Th1 related ADD with speed!
However, my other illnesses were more severe and I'm not certain if I even mentioned ADD in my soc sec application even though had my energy not given out the ADD would have forced me out of work it was getting so bad. And so I relate you what you are struggling with.
I hope you are able to get the accommodation you need to keep working. I'm pulling for you.
ClaireLast edited on Mon Sep 1st, 2008 08:43 by eClaire
____________________
CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Aunt Diana
Member in Phase 3
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Posted: Mon Sep 1st, 2008 20:44 |
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I really empathize with those that have to continue working. John's experiences with neuro herxing and his ability to understand that he is neuro herxing and share this stuff with us is invaluable.
I had to leave my work....a year before I embarked on the MP. I simply ran out of energy. It was my own business so I was not at the mercy of someone else's understanding or compassion....but I was at the mercy of my employees seeing me stumble and fall, and not be able to function, and not being able to teach them or lead them the way they needed me to. I was forced to leave it because I could no longer do it.
There is no safety net for business owners. Fortunately for me, my husband is a real nit-picker and was able to fill out the forms and see me successfully through the maze of paperwork to get me to some kind of disability from social security. It is not a lot but it's better than nothing.
Even with no stresses of work I find myself sinking at times into terrible depressions.....I think they could be neuro herxes but I am taking such a minimal dose that I can't blame it on that.
What I do want to add to this discussion is that even on the very minimal doses of the Phase 3 abx...I am still steadily improving. Still herxing, but having more good days.
So, I believe Johns' advice is good...if you need to survive in an outside environment I would recommend following it. Improvement doesn't seem to rely on the amount of abx. and less can be more.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, advil p/n, darvoocett p/n, lorazapam, ambien, benedryl, zantac, magnesium, colase, Noirs, cover-up or avoid sun, house <30l
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Knochen
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Posted: Mon Sep 1st, 2008 21:41 |
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I think they could be neuro herxes but I am taking such a minimal dose that I can't blame it on that.
If your immune system is really up and running, the dose of the abx may not have a lot to do with it. A few months back when I had to take a short break to clear one abx from my system before starting a new combo, I was in rotten neural shape for about 3 weeks! I had been hoping for a break by reducing the abx, but if anything, I was just in a steady state of badness. I've just started a new combo again, and with the reduced doses during the ramp up, it's bad news one more time. I actually do better at the higher doses, at least for a while.
I have to get up and go to work in the morning. There isn't any choice in the matter. That's depressing too. Being brainfogged and surly at work is no way to get ahead, or even to spend a day. Anybody got a trust fund they aren't using?
____________________
Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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