 |
| Author | Post |
|---|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Wed Jun 18th, 2008 11:57 |
|
Hi everyone, 
Thought i'd introduce myself. I'm a 17 year old girl living in the UK, recently housebound with my symptoms, such as;
severe IBS, PCOS, OCD, food sensitivities, candida, liver problems (gilberts and jaundice),anxiety, mood swings, hot flushes, general fatigue and post exertional fatigue, vertigo/dizziness, painful eyes, restless legs, muscle pains, persistent sore throat, swollen glands, UTIs, lack of concentration and clarity of thought, insomnia. In the recent past iv had glandular fever and recurrent acute tonillitis which continued even post tonsillectomy. From a very young age i've had an irritable neck of bladder and bad constipation. 2 years ago i was bitten by a tick and so also have possible lyme??
My mums called fix22 on here and shes been ill with CFS/ME for about 18 years and i'm really worried that im heading down the same path as her.
We're both getting our D blood tests done tomorrow at a lab in London. I'm currently on samento and am generally really worried that my tests will come back at normal levels and doctors will continue to dismiss the fact that im unwell. I wish people would believe that im unwell, it's hard hearing "you don't look ill" over and over again especially when its from your friends. Ive had to drop out of school because of my ill health and iv lost contact with all of my friends because they dont believe/understand me. I'm lucky in that i have a supportive boyfriend (at the moment) but im worried that he'll find someone else who can be on the go constantly.
Both me and my mum have tried to get a dr (using the UK drs list on here and all the drs we know gps and specialists) to prescribe the MP but we've had no luck. We were really hoping to do the MP in september.
I wanted to ask if theres anyone with similar symptoms? as im feeling very alone atm.
Also does anyone know if samento (antimicrobials) will affect the D level blood tests (25 and 1,25)/ the other MP protocol blood tests??
Hope to hear from someone/anyone soon!!
take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
Julia
Member
|
Posted: Wed Jun 18th, 2008 14:37 |
|
Hi Treefrog, and welcome!
Your story is all too common. It's so infuriating to be told "you don't look sick", and to have people thinking you're just a hypochondriac. You end up feeling guilty about something you've no control over.
When we last heard from your mum she was being treated by a doc who was MP-sympathetic - is that no longer the case? There are a couple of new names on the UK doctors list - if you haven't had it since your mum got it a few months ago, please request it again at this link: REQUEST FOR DOCTORS LIST.
Make sure the lab handles the samples right. Details are in D-Metabolites tests.
See How to post your D-metabolites tests results - when you post your results tell the medical moderators any meds/supplements you're on, such as samento, and they will take them into account when they analyse the results.
Suggestions To Get Your Doctor On Board With the MP
Chin up - you are not alone
Julia 
____________________
Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Wed Jun 18th, 2008 16:56 |
|
Hi Julia,
I think that when ur told so much that u r being a hypochondriac its easy to start believing you are when u really really arent! it's all very hurtful and frustrating but it's comforting to know im not alone even though i wish none of us had to deal with it at all.
I asked my mum about the doctor you mentioned and she said that the drs (including the one u mentioned) do have patients on the MP (a limited number at that) however they are trying to get them off the MP and are definitely not keen on offering any new patients the treatment. So the search continues... Will ask mum if she's got the new list of drs from the link u provided later because she's resting now.
Thanks, I will definitely mention the samento and vit c i'm taking, to the moderators when i post the D results.
Hope ur having a good day! take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
seanlane
Member
|
Posted: Thu Jun 19th, 2008 04:53 |
|
Hello,
I saw your post and can really identify with your issues,
My wife is very kind hearted and I love her deeply, but she like many other people cannot "see" the disease, esp. doctors,councelors etc.I don't take issue with them anymore since learning about MP, and that in itself has lowered my anxiety/isolation.
I have not started MP yet.....but just knowing that it is almost an impossibility that my symptoms.....many of which you have....are not a result of Th-1 pathogens/bio film.
This has helped me to stop trying to drill it in to others how sick I am and how bad I feel, and gives me great hope about the future. The more I understand about the process the more patience I have when everythng crashes.
Knowing what is going on in your body is really where the treatment begins, as it alters the hopelessness that comes from no end in sight.
However, cognitive therapy with someone who understands or is constructive can even alter your perception of fatigue.
Researchers have shown that energy levels show consistant rise in patients with Multiple Sclerosis after cognitive therapy.
Even better, knowing what the Marshall Protocol is ---is a tremendous thing because it is not based on guessing. I have much more courage now....I don't have to convince anybody of anything....which allows me to have better sessions and better relationships.
So very glad that you found out about this.
Sean
____________________
Bi-polar hypervitaminosis d neuropathy CFS food sensitivities 125D58 Ph1Jul/08 Ph2Oct/08 25D=17.8[Sept/08] 25D=11.7 July/09 Ph3 9/09
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Thu Jun 19th, 2008 12:47 |
|
Hi Sean,
I definitely know what you mean when you say that having a greater understanding of what is going on in your body can help with the anxiety and the worry that there's "no hope". I also like the fact that the MP is based on science and has coherent explanations that make sense rather than "guesswork". Since i found the MP i've been a lot more hopeful and just eager to do it!
I'm also trying to be more like you say and be more understanding when people can't "see" that im ill and therefore don't understand why i can't do a lot of things. i just guess it sometimes gets on top of me a bit sometimes and im a bit prone to getting quite down.
The good thing about writing on here and reading other peoples stories and experiences is that i can see there are other people, with similar issues, who understand and do believe me. So hopefully that will help me keep it seperate and diminish my desire for everyone around me to understand it all the time.
take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Thu Jun 19th, 2008 13:14 |
|
Hi,
Does anyone know where i can find some MP info on how bacteria are passed down the blood lines/down generations??
Also, recently i've started getting really painful eyes. They sting, water and are constantly a yellow colour. They sting especially if i have my contacts in so i have to give up and wear my glasses. Does anyone know what this could be??
Thankyou and take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Thu Jun 19th, 2008 22:11 |
|
| ooo, dont worry have found some great info on bacteriality!
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Sun Jun 22nd, 2008 23:11 |
|
Hi,
Have started to cut out high "vit"D foods and was wondering if rice dream original rice milk was ok?? it says it contains sunflower oil which is mentioned on the MP website as not being allowed but wanted to check as someone said they were using it. If not, if there are any other alternatives to milk available in the UK that anybody knows of, that would be much appreciated!
Also any ideas for gravy substitutes (again avaliable in the UK) - my mum loves the stuff and is determined she WILL find a substitue for it!
Thanks in advance,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
Julia
Member
|
Posted: Mon Jun 23rd, 2008 09:35 |
|
Treefrog,
Rice Dream contains added vitamin D.
Ordinary milk in the UK is not fortified with D . It will have a little naturally, but not enough to worry about unless you drink gallons. Our fresh cheese is okay too, and many yoghurts - read the labels. Butter is okay, but all marg has added D.
UK Foods List
UK ONLY
Food Tips (general, some not UK)
For gravy, I make my own, for which the base is usually Tesco 'Beefy' (comes in a Marmite/Bovril style jar). It's the only gravy base I've ever found that doesn't have MSG or other baddies. It does have a little soy, but the amount you're going to get in a serving is insignificant. Salt content is high, so don't add any extra.
Try adding a few dashes of fruit juice (whatever happens to be around - grape juice is probably the best for beef/lamb, orange for poultry, apple for pork) and a couple of shakes of cider vinegar. Thicken with cornflour or potato starch (McDougall's Thickening Granules), season with a little white pepper, onion powder and/or garlic powder. And of course add the meat juices if available, strained of most of the fat. Makes a gravy to die for 
Julia
____________________
Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Tue Jun 24th, 2008 17:23 |
|
Hi Julia!
Thanx for the gravy tip - mum is now very happy! Shame about the rice dream because im very intolerant to ordinary milk (IBS goes haywire!!) but i'll just have to think of something else!
I want to do a nursing degree after the MP but i'll need a hepatitisB jab for that. i was wondering wether u thought it was a better idea to have it done before i go on the MP or after the MP. I'm worried about doing it now because im already really ill and don't want the jab to "finish me off"! However after the MP i dont want to take the jab and then find out its made me ill again. Your advice would be much appreciated!!
Thanx very much,
Treefrog
Also, just thought that i'd share this with everyone as it really really annoyed me this morning. It's very VERY frustrating!
http://www.dailyexpress.co.uk/posts/view/49567
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
Julia
Member
|
Posted: Tue Jun 24th, 2008 22:53 |
|
Treefrog,
I think I'd be inclined to hold off the hep jab until after the MP, but I'm not a medic. I just feel you've got enough on your plate.
The comments after that article at least expressed a healthy cynicism
Julia
____________________
Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Wed Jun 25th, 2008 11:18 |
|
Hi Julia,
Thanx for your opinion, think it's probably best not to have the jab now too, will deal with it when i feel better
Also another question, do you know of a good zinc oxide sun cream in the UK?
Thankyou once again!
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
Julia
Member
|
Posted: Wed Jun 25th, 2008 15:09 |
|
I wish I did know of a zinc oxide sunscreen over here. I got Soleo by post, but it's too greasy for me. I have eczema and the sunscreen made my face too hot, which made me itchy.
Boots Soltan range includes some that have a mix of zinc oxide and titanium dioxide, but you need to read the labels as they sometimes change their ingredients.
Julia 
____________________
Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Tue Jul 1st, 2008 21:44 |
|
chronic fatigue, PCOS, IBS, OCD, candida, recurrent tonsilitis, anxiety, bitten by tick lyme?, food sensitivities, Gilbert's syndrome, EBV
-The date the blood was drawn - Thursday 19th June
-Which lab did the tests? - Doctors laboratory, Wimpole street, London, UK
-Was the 1,25-D sample was frozen for shipment? - Yes (as far as we know)
-How long have you been avoiding foods with vitamin D in them? - avoiding obvious vit D foods (e.g. fish, eggs, mushrooms etc)
-How long have you been avoiding sun/lights? - housebound over last few months, been out twice very briefly - no coverings
-List all meds, supplements (both prescription and OTC) you have been taking and why. - samento (for about 2 months - am still increasing doseage) for tonsilitis and lyme? also senna(occasionally), mintec(occasionally), use glycerin suppositories(every day) for IBS and severe constipation
-When and for how long have you taken prednisone or any other immunosuppressant in any form? - Never
-When and for how long did you take Vitamin D supplements (including any vitamin-mineral supplements), omega-3 supplements and/or any kind of fish oil? - took cod liver oil with added omega3 for 6 years prior to exams (!)
-Were you taking Benicar when the sample was drawn? - no
-Were you taking an ARB or or an ACE inhibitor when the sample was drawn? - no
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick (lyme?), food sensitivities
no D supplements, no light avoidance
English/metric
D25:42nmol/l
D125:96pmol/l
American
D25:16.8ng/ml
D125:40pg/ml
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Wed Sep 3rd, 2008 23:27 |
|
Hi again,
I'm meant to be doing a nuclear radiation test to show heavy inflammation. They take blood and then add radioactive markers to it and then reinject it back in. Then they periodically scan me over 2 days to see for places of heavy inflammation.
I was just wondering if this would harm me in any way to prevent me from doing the MP? Or wether it's a valuable test to do and recommended to support the MP? I hope this questions is ok to ask, it's just that my drs want me to do it but i don't want to if it's not in line with the MP or will affect anything in conjunction with it.
Thankyou!
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
Julia
Member
|
Posted: Thu Sep 4th, 2008 09:00 |
|
Treefrog,
Respectfully ask the doc who wants to do this how the recommendations for treatment would be altered by a high or low result. I certainly wouldn't want to submit myself to even low-dose radiation for nothing. Your D test results are the only ones needed to show that you need the MP.
Which diagnostic tests do I need?
Julia
____________________
Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Wed Sep 10th, 2008 11:36 |
|
Thanx Julia - have cancelled the appointment - i wasnt terribly keen on the whole excess radiation idea anyway!!
Was also wondering if you could recommend a good benicar timer to use?? My mum and i have been looking on the internet and following the links on the main site but we were wondering if anyone could recommend an easy to use one - seeing as we are both easily confused by technology!!
Thankyou!!
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
Julia
Member
|
Posted: Wed Sep 10th, 2008 12:05 |
|
| See Helpful Tools, in the Essential Information section
____________________
Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
|
treefrog
Member
| Joined: | Tue Jun 17th, 2008 |
| Location: | United Kingdom |
| Posts: | 79 |
| Status: |
Offline
|
|
Posted: Fri Oct 3rd, 2008 19:20 |
|
Hi,
I have been off D-foods for a while now and had a blood test the other day for general bloods as well as my D25. The trouble is that my D25 level has increased and i've been trying to stop ingesting any D foods. Could you help me out i eat fruit, veg, porridge with lacto-free milk (could this be a problem i.e. have D in??) also eat oatibix sometimes. Another thing is eating an apple or a pear a day ok?? I read somewhere not to eat them together or more than once a day?? is palm oil and honey ok?? philidelphia cheese (original brand)-(this one's for my mum)?? Could i be doing anything else that would be increasing those levels?? I'm already avoiding the light - as im housebound.
Those are the only things i can think of and im really frustrated that my D25levels arent decreasing. I'm trying really hard - any help would be much appreciated!
Thankyou!
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
|
Julia
Member
|
Posted: Sat Oct 4th, 2008 08:47 |
|
What is your actual figure for 25-D?
All the products you mention are okay (except you'd want to read the labels for Oatibix - some versions of it have folic acid).
In July you said you were on Samento - is that still the case? If you want to do the MP you need to stop that, as it affects the immune system. I take it you've checked the label for added D. I'm even wondering if Samento could affect your D result... but that's a long shot.
____________________
Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good!Julia's story
|
Current time is 23:54 | Page: 1 2 3 4 5   |
|
|
|
|
