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JanEE
Member
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Posted: Fri Jul 4th, 2008 03:58 |
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Thanks Julia. Glad you liked the idea. I forgot to mention another use for the email to myself. If you close down your computer each night, as I do, it can also act as a bookmark when reading a lengthy progress report. If you can't finish reading it in one sitting, you can send yourself an email with the link/address to the page you left off on, and add a note as to whose report you are reading and the date of post entry you left off on.
Glad you are doing so well these days, Julia. You do deserve it.
Jan
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Ph1=5/05; cfs/fibro/GI/insomnia; 125D=69/ 25D=38; beni+mino; NoIRs; cutD.
Ph2=9/06; 125D=21 / 25D=31; beni+demeclo.
Ph3=8/07; 25D=11; BeniQ6H; demeclocycline+2; (all 3 Ph.=magnesium, Arm.thyroid. Promethazine ad lib)
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fix22
Member
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Posted: Fri Jul 4th, 2008 19:56 |
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Thank you Janet, Jan and Julia for all your helpful hints and tips. I'm not good with anything technological, but will follow your instructions and learn!
Is there any chance that Professor Marshall and team would come to the UK in the near future to spread the word to Drs and CFS/th1 people over here?
Even though the WHO has validated CFS as a physical illness  , in the UK it is still treated (by 99% of Drs) as a psychiatric illness  which is incredibly frustrating especially for those of us who have been unwell for many years and have all but given up on ever becoming well again.
I am so pleased and grateful to have found the MP, the science behind it is amazing and I cannot wait to start it, but trying to convince the 99% of pro-psychiatric Drs in this country is proving very, very difficult.
The one CFS specialist who still prescribes the MP (and has done for a few years now) is oversubscribed and not taking on any new patients  (this Dr also has patients on other therapy, the MP is a last resort). The CFS specialist that I have been treated by for over 15 years (on and off) no longer prescribes the MP and is instead prescribing all of the antibiotics that are used on the MP, but without the Benicar! Obviously this is not something that I would consider. A private US hospital that 'treats' CFS near London is 'vitamin' D mad, apparently the head Dr of that hosp spoke with Prof Marshall on a few occasions (my D25 levels went from 42metric to 14metric aftrer 3 years of high dose prescribed D vitamins and mega dose fish oils 4000-5000mg per day. The penny still hasn't dropped, they want to raise my D doses! I haven't taken any Ds since April 08 and never will again. MY GP practice is not at all interested. I will have to step up the begging and make more of a nuisance of myself!
Can you think of any other way that I could get onto the MP? Are there any prescribing Drs from abroad US, Canada, Australia or anywhere else really, that would prescribe for a UK resident via e-mail/telephone consult or by coming to this country etc? Getting a private UK GP to take care of me and take regular bloods etc shouldn't be as much of a problem (I hope), the prescribing is the problem!
Thank you for your time and attention. Best wishes fix22  .
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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natalie17
Advocate
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Posted: Sat Jul 5th, 2008 03:49 |
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Hi Fix22,
I think Julia & Janet have given you all the info you could have - the only thing I can suggest is persistence. Don't give up!
The only thing I can think to add is that the consent to treatment form may help your Doctor feel more comfortable.
Also, suggesting your prospective supportive Doctor join the Professionals' Forum.
I definitely feel your frustration as a fellow CFS sufferer. I literally had one Doctor laugh in my face .
Very best of luck on your search,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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fix22
Member
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Posted: Thu Oct 16th, 2008 00:35 |
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Thank you for replying to my post Natalie, its great to hear from a fellow cfs person who is doing so well on the MP .
At long last my daughter and I have a prescribing Dr and a monitoring Dr and are awaiting our MP medications as we speak. Of course we are both elated as at last there is hope that we may in time resume some tangible quality of life and on the other hand petrified  as the self medicating without the help of the MP site nurses is very daunting for us and we don't know how we will react to the medication and the consequent IP. Anyway there is no turning back now  .
I have three large roof windows in my kitchen that are not easy to access, but let in a lot of daylight. There is nowhere to hang a rod for curtains/drapes or blinds etc. I have a dilemma as to how to cover them most effectively. I wonder if anyone can help. Two of the windows in my bedroom that had blackout lining fabric attached to them have cracked as have three in a further bedroom that had a thick paper stuck to them (double glazed windows) so I don't want to damage anymore windows, also if these single glazed windows were to crack they could fall on someone (from a great height). Is there something designed for windows that could safely be stuck on them to block out sunlight or could we paint something on them to block out the light? Any ideas would be very much appreciated.
Other than the above problem our preparation seems complete.
Thank you for your time and attention. fix22
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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natalie17
Advocate
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Posted: Thu Oct 16th, 2008 02:13 |
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Hi Fix,
Remember that although we cannot give you medical advice we can always point you to the right reading here on how to manage your meds, and your Doctor should keep a close ee on you and (ideally) will have access to the Professionals' Forum for any specific to you medical questions.
I also suggest seeing blocking light from windows .
.. Hope that helps. Let us know if you have any further questions.
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Aunt Diana
Advocate
| Joined: | Fri Oct 26th, 2007 |
| Location: | |
| Posts: | 82 |
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Offline
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Posted: Thu Oct 16th, 2008 16:40 |
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Hello Fix,
I had two skylights (I believe that's what your roof windows are?) in my living room. I hired a window treatment company and they installed shades that open or close with the help of a long pole. They were not cheap, but they are worth the money. They also help keep the room cooler on hot days.
Otherwise, I would think aluminum foil would work well if someone could reach the skylights with a ladder. The foil would be light enough to stay put with some tape and it works very well as a total light block.
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| ABC of MP| MP Stories| Bacteriality|
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fix22
Member
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Posted: Fri Oct 17th, 2008 19:59 |
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Thank you so much for your advice Natalie and Aunt Diana, I really appreciate your help .
Would you know if Mefenamic Acid (Ponstan) is ok to use with the MP meds? I have it for very painful menstrual cramps, usually need a couple of doses per month and it works wonderfully .
Is honey ok to eat (occasionally)?
Would you also be able to direct me to some medical papers/information which concisely sums up the MP, this is for an interested obstetrician/ gynaecologist (infertility, pregnancy, PCOS, hormonal imbalance, fatigue, endometriosis, fibroids, insulin resistance, diabetes type 2 and 1 are some of her interests/patient base), she seems to have figured out for herself that her insulin resistant patients have low D25 levels (plus medical papers have this conclusion too) and has so far resisted supplementing them with Vitamin D. She is interested to look a little deeper into the MP, but she has a limited attention span as she is very busy so the info has to be on her subject of interest and to the point.
Thank you, thank you, thank you for your time and attention Best wishes fix 22.
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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Julia
Advocate (on leave)
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Posted: Fri Oct 17th, 2008 20:50 |
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We're not medics here, but I understand Ponstan (Ponstel in US) is an NSAID - you might want to discuss another choice of pain relief with your doctor after reading this link.
Honey is fine as an occasional treat, but remember it's pure sugar 
Physicians' Guide is long and not all of it is relevant to your purpose, but you might like to print out selected pages. There is a full list of research papers at Papers and Presentations for Physicians. See also Suggestions To Get Your Doctor On Board With the MP, which has some useful links.
DIABETES
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Always consult a physician
Essential Info; FAQ; Julia's story
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fix22
Member
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Posted: Sun Oct 19th, 2008 18:38 |
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Thank you most kindly Julia for all the useful links and the answers to my queries.
I would like to have my D125 re-tested before I start on the MP (meds havent arrived yet). My original D125 was not accurately handled or tested. The only way that I can prove to my previous 3 CFS specialists and my GP that I am truly sick and need a therapy like the MP and that the science behind the MP is correct is to have a proven low D25 (which I have 4.8) and a high D125 (which I don't have due to a false low reading, according to my symptoms and previous long term high D supplementation). All three CFS specialists request D125 levels for their patients, but apparently the results are always within the 'normal ranges' and therefore the low D25 levels are 'replenished' with D supplements. Several of my CFS friends are still being pumped full of D's and it breaks my heart.
I don't want to waste my money. How can I ensure that the labs treat my blood in the correct manner? Which lab in the uk has a good chance of handling my blood correctly? I tried TDL last time! Would you know where I could find the address and phone no. of the Quest lab that is recommended by the MP site so that the UK lab can contact them as to proper handling/reading of the D125.
Thank you for your time and attention, best wishes fix22
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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Julia
Advocate (on leave)
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Posted: Mon Oct 20th, 2008 12:01 |
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The only lab I have sound-looking information for is the Supra-Regional Assay Service at Manchester Royal Infirmary. They insist on samples being frozen (but then so do TDL!). You can get the blood drawn at a local hospital, and it's frozen for transport. The topic D-Metabolites Tests suggests:
To facilitate correct handling of the blood sample for 1,25-D and to avoid your having to tell the drawing lab how to do their job, you can ask your doctor to sign and staple the following instructions to the lab order:
-Please perform the following Vitamin D tests: 1,25-D and 25-D.
-Please ensure that collection staff arrange for centrifuging and freezing of the 1,25D sample. (only)
-The sample should be allowed to settle and clot at room temperature for at least 30 minutes (but no more than two hours) and then centrifuged. Do not hold on dry ice prior to centrifuging.
-After centrifuging, freeze at between -2 and -10 C.
-The sample must be transported on dry ice in order to remain frozen until it reaches the testing lab.
Good luck!
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Always consult a physician
Essential Info; FAQ; Julia's story
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fix22
Member
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Posted: Tue Oct 28th, 2008 22:37 |
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Thank you very much Julia, thats really helpful .
Sorry another question  !
Would anyone know the easiest way of purchasing Benicar online for delivery to the UK, as cheap as possible, fast delivery as possible, secure payment as possible? Any advice appreciated.
Thank you for your time and attention. fix22
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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Julia
Advocate (on leave)
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Posted: Wed Oct 29th, 2008 00:13 |
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Fix, has your MP prescribing doctor said you definitely have to order meds privately? I get all the MP on the NHS, thanks to my forward-thinking GP.
Where To Purchase Benicar For Self-pay Members - see esp. Generic sources (from India).
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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fix22
Member
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Posted: Thu Nov 13th, 2008 23:54 |
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Thanks for your help and the links Julia.
Unforunately in desperation daughter and I have had to go with private physician, so NHS prescription of Benicar etc not ever going to happen!
I have read somewhere on this site that Olmecip medoxomil is fine to use (much cheaper also ), but they contain a colour in them, Titanium dioxide (they are plain white tablets), are these ok to use?
Thank you for your time and attention, Best wishes, fix22
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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fix22
Member
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Posted: Thu Nov 13th, 2008 23:54 |
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Thanks for your help and the links Julia.
Unforunately in desperation daughter and I have had to go with private physician, so NHS prescription of Benicar etc not ever going to happen!
I have read somewhere on this site that Olmecip medoxomil is fine to use (much cheaper also ), but they contain a colour in them, Titanium dioxide (they are plain white tablets), are these ok to use?
Thank you for your time and attention, Best wishes, fix22
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 215 |
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Online
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Posted: Fri Nov 14th, 2008 07:39 |
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| Titanium dioxide is what's used to make practically everything white, so unless you have a known sensitivity to it, it should be fine.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 25 |
| Status: |
Offline
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Posted: Fri Nov 14th, 2008 19:00 |
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Thank you JoshR for replying to my post (sorry posted the same message twice by mistake ) and for reassuring me. I'm just eager not to take or do the wrong thing!
Have taken my third benicar (8hrly at the mo.). Will order some Olmecip asap .
Thank you for your time and attention, much appreciated .
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IBS, PCOS, OCD, fatigue, anxiety, bitten by tick (lyme?), food sensitivities
no D supplements, no light avoidance
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fix22
Member
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Posted: Fri Nov 14th, 2008 19:10 |
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| OMG, what has happened to my brain ! Sorry treefrog is my daughters username/account, we share the same computer, she didn't logout and I used the computer without logging her out and logging myself in!!!! Sorry, sorry, sorry. The above message was written by and should be on fix22 thread .
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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fix22
Member
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Posted: Sun Nov 16th, 2008 08:27 |
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Have been on Benicar for 48 hours now at 40mg 8 hourly, then one dose of 40mg at 6am (6hourly) as i woke with fast heartrate chest pain, stomach pain abdominal pain, liver pain and kidney pain- all intolerable. so on top of the 40mg at 6am, i took 40mg stat and 20mg sublingual at 8am, as the pain was even worse and i was scared!!
Pain has now subsided but not gone. Should i continue with benicar 4 hourly? Have i taken too much benicar? I was not expecting such a severe reaction, so early on.
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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Dr Trevor Marshall
Research Team
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Posted: Sun Nov 16th, 2008 21:50 |
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Benicar does activate your immune system. It also re-balances the nuclear hormones. Additionally it palliates pain due to cytokine release. Both the immune system and the hormal imbalance could be causing malaise. You will need to juggle the dose to find the most stable point for you, and then it will take 1-2 weeks for all the hormones to settle into that new balance point.
It would be a good idea to post all the meds and supplements you are taking, the frequency you take them, and the dosing. Did Doc measure your 25-D before prescribing the Benicar?
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fix22
Member
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Posted: Mon Nov 17th, 2008 16:01 |
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Thank you for your help Dr Marshall.
Have been unable to get hold of my prescribing Dr this weekend so am free-wheeling a bit .
I was on many supplements and medications, but slowly weaned myself off all of them in 8 months, prior to commencing the MP (low dose anti-depressants, HRT, mirena coil, vit D supplements and fish/other oils, Mg, glyconutrients, Q10, Gaba, vitamins and minerals, de-sensitizing injections, oxygen, verapamil, many antibiotics/antivirals, herbal antimicrobials). I felt as dreadful off them as I did on them, so no difference! Now only take (inhale) oxygen as needed.
My most recent D25 taken in October 2008 was 4.8ng/ml (12 nmol/l). My D125 taken 4-5 months ago was 40pg/ml (96pmol/l), but I'm pretty sure that it wasn't frozen/ handled correctly.
My BP now is around 99/65 P. 74-120+bpm. Before starting MP was127/74 P.60 Am fully No Ds compliant (light/diet). Slight photosensitivity with TV and computer,wear noirs 10%. Haven't ventured outdoors in light as yet (too unwell), but have 2% noirs at hand plus zinc cream and would cover up well.
Took 20mgNTR Benicar 2 hourly from 12 midday yesterday till 6am this morning and symptoms/pain were kept stable except fast heart rate at rest, even more so when mobilising, more comfortable than before 2 hourly dosing though. Switched to 4 hourly Benicar after 6 am this morning, most symptoms stable but pain starting to increase and already heart rate very fast/uncomfortable. Will return to 2hrly dosing if need be or becomes intolerable.
If all symptoms are stable/tolerable except heart rate, should benicar be increased or should/could verapamil be used to get the heart rate down a little?
Should I be aiming to get back to 6 hourly (40mg Beni) dosing (with all symptoms being stable) before I start the mino?
Am I likely to regain 6 hourly (40mg beni) dosing in 2-3 weeks as my hormones/immune system normalise or is my immune system too wired now and how will that impact on starting mino?
Thank you so much for your time and attention, sorry to burden you. Thank you also for bringing the MP into the public domain and giving many chronically ill people the chance to get well and lead normal fulfilled lives .
One last question, sorry!!!! My eldest and middle daughter both have th1 (cfs/lyme) My youngest daughter (age 12 now, first noticed age 4) has linear morphea which affects much of the left side of her face, causing deformity, she has several brown patches on that side of her face and where the patches are, her skin is very thin with veins prominently showing through the skin and the fat layer is also very thin. The bone structure on that side of the face has slowed growing as has the whole of her lower jaw which is much too small, with an abnmormally large overbite and half of her tongue (left side) is withered, whilst the other half is normal. She is being treated with methotrexate and takes folic acid, initially had 3 bolus doses of intravenous steroids to try to disable the immune system. Aesthetically she has improved on this regime, but it has a 75% relapse rate!!!!This disease seems to be under the umbrella of Parry Romberg and is linked to scleroderma. Would this disease respond to the MP?
Thank you, thank you, thank you .
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cfs since 1991 cardiac rhythm probs + chest pain, balance,fatigue, multiple active bacterial/viral infections, lyme. No Ds in diet,darkened house,rarely leave house. 10/08 D25 4.8
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