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FreeStanler
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Posted: Tue Aug 21st, 2012 11:25 |
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Hi All
I am posting on behalf of my wife, who is too sick to deal with these matters.
We've been researching the MP quite a bit (for weeks now), but we're both foggy brainish (me less so), so there's some more reading to do. But the mpkb site is basically covered.
We live in Durban, South Africa. We have terrible luck in finding a doctor willing to prescribe the MP. Even our own health practicioner. Notwithstanding that we provided them with the info suggested in the mpkb, and the emotional pleas. We are trying with overseas doctors now.
Other South Africans listed on this site, all of them, have not responded to my private messages and emails. I asked them which doctor in SA helped them; perhaps they will help my wife, even though we might not be in the same city. I will continue messaging them.
That being said, if there are any South Africans seeing this message, PLEASE contact me. We could use advice about how to procure the medication, and perhaps your doctor will help us!
So my first question is: can I order Olmesartan Medoxomil and Minocycline without a prescription somewhere? Any South Africans with experience regarding this?
Second question: Will the curemyth1.org and marshallprotocol.com moderators and health consultants be OK with that, ie. us basically medicating without the direct assistance of a local doctor? We will post regularly (maybe too regularly for your liking!)
My wife has - very diligently - restricted all vitamin D: sunlight and supplements/foods. Always wearing long sleeves and wide brim hats, and zinc oxide sunscreen covering what little exposed parts. It definitely seems as though her symptoms have gotten much worse, and she's experiencing some new symptoms, and old symptoms that she experienced years ago.
Third Question:
Is that immunopathology? We think it is. Is it possible without yet using Olmesarton and Minocycline? It makes a very bad situation even worse...but if it is indeed IP, we will be very happy that, finally, we have reached a solution, and a curative one at that!!!
Fourth Question:
Can we get login details for the site marshallprotocol.com? This is so we might more easily research other posts over there, and be ready to post once Colene has received her medications (pending some more advice regarding how to get it; please see above).
My wife has been living with her illness for 10+ years. She is 29 years old. She is at her breaking point. Your consideration and advice would be intensely appreciated. Her best diagnosis is CFS/Fibromyalgia.
I don't know how much to write over her RE her symptoms, I don't want to flood your screen  so I will try to be salient about it. Forgive me if I fail.
Here follows a list of her symptoms, with no more questions after that.
Intense, constant headache.
Tight trapezius and neck muscles. Also feels like many 'trigger points'.
Extreme fatigue. Lethargy, weakness, fragility. Would have varying degrees
of bursts of energies, more like a 'high', not a stable increase in energy.
If she utilise those 'high energy' moments, she would "pay for it" in the
following days with worsened symptoms.
Difficulty in doing basic tasks, like getting dressed or showering. Will
be very tired after being dressed. Will have all the intention of going
out, but after the difficulty of choosing what to wear (brain fog), she is
exhausted after dressing herself.
Couldn't make her own food for many years
Foggy brain
Bad short term memory
Nausea
Digestion sensitivity: oily/rich foods.
She wakes up every morning with nausea, no matter what she ate, or whether
she ate.
Weakness and soreness in muscles, can't stand for long periods of time
Overreaction in muscles when doing any activity, even low activities like
just walking. After a short walk, the muscles/her body would feel as though she had run a marathon.
Random immunity related illnesses: flu like symptoms, stomache issues and
pains, Had lung TB in 2006
Insomnia/hyper arousal – never feel refreshed after a night’s sleep. In
fact, most the time awakes feeling exhausted, and it stays that way.
Feel sicker when she looks at computer screen
Would feel momentarily better when being in the sun, but even worse a short while after being back in the house.
She has to urinate more frequent than other people, and a few times at
night.
Stopped driving, or very little thereof. (not a symptom but an effect)
TMJ pain. She feels as though her jaws have moved over the course of the
last 10 years. She doesn’t have a proper bite at all, her front teeth don't meet. Before the last 10 years, she had a perfect bite.
Skin is sensitive to the touch, and bruises more easily (though not
freakishly so).
When she feels very bad overall, she presents with slurred speech.
She has a strange wetness in ears at times.
Dizziness. When her eyes are closed, at feels as though the room is
spinning. Feels like this a few times a day.
Psychological issues, she believe relating to being physically sick; not
the other way around:
Anxiety, most of time
Depression, every now and then.
Random claustrophobic reactions in even normal venues. Felt more easily
depressed in dark spaces.
Since restricting Vitamin D, her eyes have varying degrees of a burning sensation. Her back that broke out in acne. Moderate diarhea since last week. We don't know whether that is due to possible immunopathology.
*The most prominent symptoms she definitely experiences everyday:
Varying degrees of headache (but non-stop)
Very fatigued
Nausea
Dizziness
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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djr
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Posted: Tue Aug 21st, 2012 11:55 |
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I can't answer all your questions - I'm sure a moderator will do that - but I'm doing the MP without a doctor and get great support from everyone here and at the study site. I buy olmesartan from Hong Kong and it gets through UK customs fine.
My symptoms are very similar to your wife, but a bit less severe. I'm three months into the MP and happy with progress. I noticed a big change too with just avoiding sunlight and vitamin D foods, and I'm currently getting all sorts of old and weird new symptoms.
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MP May'12 (no breaks) | CFS, Depression | IBS | Probable AS
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FreeStanler
Member
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Posted: Tue Aug 21st, 2012 12:10 |
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Wow, djr, thanks for quick reply!
So, you order your meds without prescription directly from Hong Kong? Could you please send me the contact details for that pharmacy? Do you also order Minocycline from them?
Have you had no trips to the ER yet? We are afraid of that happening 
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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djr
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Posted: Tue Aug 21st, 2012 12:29 |
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Have PM'd pharmacy details.
I haven't been anywhere near ER, but I don't think my overall symptoms are as bad as your wife.
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MP May'12 (no breaks) | CFS, Depression | IBS | Probable AS
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FreeStanler
Member
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Posted: Tue Aug 21st, 2012 15:56 |
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| If anybody else has some answers to my other questions, it would still be much appreciated :-)
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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Symptomatic
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Posted: Tue Aug 21st, 2012 16:48 |
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While I'm sure it's not the only cause of polyuria (excess urination), mine was due to hypercalcemia. When I did my 24-hour urine test, I actually had to return to the lab to get another jug since I had exceeded the volume of the first one! Another symptom of hypercalcemia is nocturnia (night urination).
My hypercalcemia is tied to hypervitaminosis D. My 1,25D was 140.7 ng/mL before I started taking Benicar. The 1,25D came down, and the calcium came down with it, which led to the polyuria/nocturnia going away.
Interestingly, I also had the shoulder/back pain with trigger points, and migraine. That seemed to go away as well.
Unfortunately, I've "relapsed" somewhat at the moment. My 1,25D and calcium are both up again. I'm almost positive this was due to a supplement I was taking (I've since stopped it, nearly a month ago now, but it may take me a few months to get the levels back down where they were).
Again, not sure if any of this is relevant to you, but thought I'd throw it out there.Last edited on Tue Aug 21st, 2012 16:49 by Symptomatic
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FreeStanler
Member
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Posted: Tue Aug 21st, 2012 18:29 |
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| Thanks symptomatic, I'll pass the info onto my wife. So glad to hear the shoulder and back pain (with trigger points) and migraines that went away for you. That is heartening for us. And although the polyuria seems a bit less with Colene, that is also heartening news. Thank you.
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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Symptomatic
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Posted: Tue Aug 21st, 2012 19:04 |
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And correction, my 1,25D was 140.7 pg/mL (not ng/mL as I said above). Sorry 'bout that!
I wish the best for you and your wife.
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Cynthia Schnitz
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Posted: Tue Aug 21st, 2012 19:38 |
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HI Colene and hubby. While we can not tell you it is alright to go on the MP without a doctor, we understand the necessity some people face. So, you will not be given a hard time over this. But, it might be good to tell your family doctor about what you are doing on your own responsibility, and ask if he could at least do some basic lab work. Some where on the MPKB there is discussion of what labs you should be checking, and certainly the vit D as often as your doctor will agree to, hopefully as often as once every 3 months.
I believe there were some mail order pharmacies mentioned in this old, old thread, so you can check them out. But being in SA may add to the problems. But someone in SA will have to break the ice for those to come. 
Check out garyv's post here, http://www.curemyth1.org/forum7/1576-3.html
Try really hard to find some IR blocking sunglasses. You can try calling and ordering the NoIR glasses, or you can check out welding supply companies in your area.
http://mpkb.org/home/lifestyle/light/noirs
http://mpkb.org/home/lifestyle/light/prescriptionsunglasses
And there are more articles that might help if you use the word NoIR or "eye protection", etc. in the MPKB search box. Using eye protection may help with the brain fog (for both of you), and Colene's headaches and problem with computer screens.
If Colene is getting too much discomfort from the vit D avoidance, she may have to back track a bit on that until she starts the olmesartan. The ARB effects of the olmesartan may help this new set of symptoms/worsening of the previous symptoms. It is most likely IP, not a real worsening of what she has, which is properly called TH1 disease.
Here is where you ask for access to the Study Site. I believe they are now signing up those planning to go on the MP, so go ahead and ask for membership.
It's time to move to The MarshallProtocol.com site . . . . . . . for those on the protocol
Frequent urination may not only be a high production of urine, but an overly sensitive bladder. I have had both at the same time pre-MP, and both are much better, but not completely gone (~4 yrs on MP).
The bite problem may be from the microbiota infection in the jaw, and inflammation in that area, causing a change in position of teeth. It should return to normal eventually with the eventually elimination of the inflammation. I personally had a recession in an area of my gums on the MP, but just waited it out, and eventually the area filled in again.
All of her symptoms I have seen in our cohort, except claustrophobia, but I would expect that if you were to put this word, or variations of the word, in the search boxes in the 2 sites (Study site when you get access) or the MPKB, you would find it also is a TH1 symptom.
Welcome to our forums, Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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FreeStanler
Member
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Posted: Tue Aug 21st, 2012 19:46 |
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Wow, Cynthia. Thank you for the warm welcome, and the great info. If this works I am going to cry for a month. A cry of immense joy, of course. Will keep in touch!
Oh, and we want to help as many SA's as possible. We can't wait to start doing that too.
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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Cynthia Schnitz
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Posted: Tue Aug 21st, 2012 19:50 |
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I hope you have seen Natalie's Story and the videos at the end of this page.
http://www.marshallprotocol.com/forum30/12125-4.html
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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FreeStanler
Member
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Posted: Tue Aug 21st, 2012 19:59 |
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Yes, we did, thank you! So inspirational. It meant so much to my wife. You can clearly see the marked improvement in the videos as the time goes by.
We are almost afraid of hoping too much, you know? You don't want to be completely shattered, after everything we've tried these past 10 years! But we have no choice but to do it!!! The evidence is very compelling. Thanks for your help, Cynthia...
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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Cynthia Schnitz
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Posted: Wed Aug 22nd, 2012 04:35 |
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| Well, this is a very slow process, so don't be expecting too much too soon. But be looking for little things along the way to give you some sign things are going as expected. As you can see, dropping the vit D is doing something, so that is a start on validating the science. Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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FreeStanler
Member
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Posted: Wed Aug 22nd, 2012 10:21 |
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Hi all
I would just like to state that I have, since my first post, received some heartening messages from fellow South Africans.
One of them has success with ordering Olmesartan (Olmecip) from the following online pharmacy:
http://www.inhousepharmacy.biz/p-298-olmecip-40mg-olmesartan.aspx
They ship once a week and it takes about 5-days to arrive at your front
door using FedEX. You don't need a prescription to order. It costs approximately R1500 per month.
Although Olmesartan is expensive (ouch!) we are overjoyed at seeing the light at the end of the tunnel towards finally starting this treatment.
Thanks for everyone who has replied via pm and on this thread as well.
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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Cynthia Schnitz
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Posted: Wed Aug 22nd, 2012 18:29 |
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Is that item being purchased the name brand Benicar, or the generic version? Most mail order pharmacies have both, and the generic is much cheaper and just as useful. The Benicar is enteric coated, and a few members need the enteric coating, but most don't.
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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FreeStanler
Member
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Posted: Wed Aug 22nd, 2012 18:32 |
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Thank you for the advice :-)
It is Olmecip...if her stomach is too sensitive, I guess we'll go with the Benicar...
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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Cynthia Schnitz
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Posted: Wed Aug 22nd, 2012 18:45 |
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These people are pretty high, almost twice what I pay,and maybe, if they also charge shipping, it is twice, but that is what you pay without a prescription I guess. You may want to shop around, if the person who gave this to you did not do a good enough job.
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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FreeStanler
Member
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Posted: Wed Aug 22nd, 2012 18:47 |
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| OK, thank you. The insight is much appreciated, because we do need to save money :-(
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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FreeStanler
Member
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Posted: Thu Aug 30th, 2012 15:55 |
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Hi Cynthia and others
I've filled out the form for my wife, Colene, to join the main study site (her profile is thus not active yet). We already have e Olmecip and Minocycline, but have not started using it yet. We are at unease to start without having quick and direct access to the main studysite forum. That's also why I ask a few pressing questions now over here, if that's OK.
(1) Colene got a disturbing result for her latest 25-D test done on the 23/08: it was 48nl/mg, higher than the previous result of 45.8 ng/ml more than a month ago (see signature), and she was very diligent in stopping all sunlight and vit D foods! We know there might be an explanation for strange results (Candida, difference between serum level and cellular level D-counts) but it is still very disconcerting, especially when you have so much hope for a curative process. Should we be worried?
We are trying to cover all our bases before she starts taking Olmecip. She is worried that she might end up in the ER in the beginning, and that the doctors don't listen to us with just the letter and our pleading, that we might be seen as stupid patients, so we are going to try inform a few emergencies doctors at our hospital, besides our GP who is not THAT into the MP, of the do's and dont's in case of emergency. Flowing from that, we would also like to ask:
(2) How much symptoms can one expect right in the beginning?
(3)She takes up to 3 Rivotril a day, is this OK? And cymgen (but it doesn't work) - can and should she wean off these? The Rivotril is the only thing she has right now that palliates her intense headache symptoms.
(4)As part of her symptoms she used to have, she used to get what felt like heart palpitations quite often, a few times a week at certain stages. Fortunately, those have now receded 99.9%. However, we've read that the MP can bring back old symptoms when experiencing immunopathology, and the mpkb.org website says that if you experience heart palpitations or irregualr heartbeats, that you should go to the hospital immediately. What if, like a time gone past, she does relive heart palpitations a few times a week? Should we definitely race to the hospital each time? Or is it a matter of judging each palpatative episode by itself? A Rivotril (or two,0.5mg each) is what always helps in situations like those. It immediately calms the whole body.
(5)So, should Colene wait to go on the MP, until her profile is active on e study site, or can she start using Olmesartan Medoximil (at 40mg 4 times a day)?
(6)We are thinking of using only the Olmesartan Medoximil, and not yet any Minocycline, in case the IP would be too intolerable with the Minocycline. If no IP or little IP is experienced after 4 days, she will then start the Minocycline at 25mg every 2nd day, and if still little IP, ramp up an extra 25mg per week until strong IP is experienced, right? Up to a maximum of 100mg every other day.
Sorry about all the questions! The help would be so much appreciated...
Last edited on Thu Aug 30th, 2012 19:52 by FreeStanler
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MP not started | restricted light & vit D foods since 25/07/'12 | best diagnosis = fibromyalgia/CFS '02 | severe fatigue, non-stop headache (literally), constant nausea, dizziness, foggy brain, random flu-like symptoms, others too | last 25D= 48ng/m 2
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Cynthia Schnitz
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Posted: Thu Aug 30th, 2012 20:29 |
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1) I wouldn't worry too much about the fact that her 25D did not go down. Lots of MPers have had this problem, but eventually it does go down for most people.
2) I also would not worry too much about initial high IP, as the most likely scenario is that she would have less IP because of the high 25D. If anything, if you and she are worried about some initial high IP, then starting the olmesartan with high 25D should give you a chance to ease into the MP, as the IP should start in a more modest form. However, you may want to forget about the Minocycline ABx until you feel much more comfortable about what is to happen on the MP. There is plenty of time to think about ABx later.
3) Rivitril is usually called Clonazepam on our forums, and you may want to put the name in the search box here and on the MPKB, and see what is said about it. i believe there are members using that.
http://mpkb.org/home/othertreatments/anticonvulsants
The cymgen is usually referred to as Cymbalta here. You can check this out the same way. But I know that this one is particularly discouraged by Dr. Marshall. If it is not providing any important benefit, then weaning is a very good idea. Just don't try to wean too fast, as I think there were reports of difficulty weaning.
When you get access to the study site, do the search again, and you will get many more results that you can read.
4) I am going to have to leave it up to you on this one. We can not give you medical advice. A trip to the hospital in the early stages of the MP is not as dangerous to the patient as it is in later stages when the immune system is working extremely well, and removal of the olmesartan could be life threatening for some. We have a few that never bothered to tell the staff that they were taking it, a few told and then slipped the olmesartan to the patient without the staff knowing, but the best is to get the hospital staff on board so that such measures won't be necessary.
5) She can probably start the MP now, as we will forward any major concerns to the rest of the moderators if there is a problem while reporting here. Most people have started the MP before they have gotten access to the study site.
6) You really shouldn't start the Mino for a couple of weeks at least. It will take that long for the rebalancing of the hormones. There really isn't any rush to get on the Mino, so take your time.
We are here to answer questions, so keep them coming.
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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