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Verena
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| Joined: | Fri May 15th, 2009 |
| Location: | Germany |
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Posted: Thu Jan 14th, 2010 18:47 |
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Hi all,
I recieved some questions, why I am not posting any more. Thanks to Dr. Marshal I moved to the MP - Study Site and am posting there. I am stil on Benicar only and just had a problem with Emotional IP (Depression, Fear) during my Pre-Menstrual phase. Besides that, everything is fine. The last flare up of "greetings from MS" where on November 19th, when I had that light double vision.
Best, Verena
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Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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Verena
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Posted: Sun Feb 28th, 2010 20:06 |
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Hi all,
I am on Benicar since a little more than 4 months now and doing fine.
Besides that, I must admit, that I did learn a lesson about sunlight, yesterday.
I spent some days with friends in Hamburg (North Germany), where the weather usually is cloudy and rainy at that time of the year. We left the house in the morning to buy some foods and I forgot to change my glasses. About ten minutes walk away from my friends house, suddenly the sun came out  Hey, if anyone ever plans to make a movie about the feelings of vampires, please do pm me, you will get a detailed report....
Well, all jokes aside, this was the first time since I started the MP, that I got into bright sunlight. It felt as if my brain was getting all foggy; and somehow as if I was loosing contact to my body. Hard to discribe. I took Beni Q4h for the rest of the day and was fine again the next morning.
I am posting this report in the open forum, as I got the impression, that some folks (me included in the beginning of the MP) don't take the warning to protect themselfs against sunlight serious enough. Do take it serious!!!
Best, Verena
____________________
Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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Verena
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| Joined: | Fri May 15th, 2009 |
| Location: | Germany |
| Posts: | 83 |
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Posted: Fri May 7th, 2010 18:34 |
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As someone seems to be spreading links to my thread through various german autoimmun boards (thanks a lot mate  ), it seems, that I have to keep posting short updates in this thread.
After about half a year on Olmesartan alone I had a neurological check up in a clinic specialized in MS. The neurological tests came out with "no abnormalities".
End of March I started Mino. The first few days where horrible. I had the worst headache sinds ages; it felt like a migraine- luckily without aura. The pain in my joints came back and little brainfog. Altogether, I felt like before I started Olmesartan. When I ramped up from 25 mg to 50 mg every other day, I got better.
Now, six weeks on Mino (50q48), I am fine again.
Light sensitivity is no major problem. When the sunshine is quite bright, I have to avoid the light, otherwise I get tired and dizzy. When the sun is still "soft", it does not matter that much (any more).
Recent results of my bloodtests are great. Everything is in the range; my kidney and livervalues are fine. CRP is quite low.
At the moment, I am working on a comparing sheet of all the bloodtests I did up to now, including pre MP ones. Will take some time, but will be posted in this thread as well.
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Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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Limburg
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Posted: Fri May 7th, 2010 20:13 |
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Hi Verena,
What a wonderful news! 
May I ask what neurological tests you have had?
We can toast on it this Monday  
Annemarie
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Annemarie
MS(DX1997)Auto-immune hepatitis (DX2008)
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Verena
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| Joined: | Fri May 15th, 2009 |
| Location: | Germany |
| Posts: | 83 |
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Posted: Sat May 8th, 2010 11:34 |
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Annemarie,
all the tests they do to find out, if you are enabled in any which way. Translating would be to much for now, tell you on Monday.
Best, Verena
____________________
Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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Verena
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| Joined: | Fri May 15th, 2009 |
| Location: | Germany |
| Posts: | 83 |
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Posted: Wed Jul 7th, 2010 19:47 |
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Just home from MRI and "after party". I have no new lesions and some old ones have disappeared or one can see just a shadow
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Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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Limburg
Member
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Posted: Wed Jul 7th, 2010 20:28 |
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Congratulations Verena!
Germany just lost the semi-finales football in Afrika, you are beating MS and are winning!
Eureka for Dr.Marshall !!
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Annemarie
MS(DX1997)Auto-immune hepatitis (DX2008)
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A.Klaas
Member
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Posted: Wed Jul 7th, 2010 20:31 |
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Great news, Verena!!!
Anne
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elevated cholesterol, high LDL, low HDL, bad ratio LDL/HDL. D.25: 18, D1.25: 52. (november 2009)
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Ron
Foundation Staff
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Posted: Wed Jul 7th, 2010 22:07 |
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Great!!!! 
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Opa's story (RA) | MPKB
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Verena
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| Joined: | Fri May 15th, 2009 |
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Posted: Thu Jul 8th, 2010 16:04 |
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Bedankt, jonges (thanks, guys)
Actually, I must admit, we used the results as an excuse for a big sin , we had (pssst...) grilled fisch and shrimps (/pssst...) at our Pre-MP-favorite Portuguese Restaurant ... just could not resist it. Today we are back on our diet :-)
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Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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A.Klaas
Member
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Posted: Thu Jul 8th, 2010 16:19 |
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Naughty girl! (I would do the same)
Anne
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elevated cholesterol, high LDL, low HDL, bad ratio LDL/HDL. D.25: 18, D1.25: 52. (november 2009)
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Diesel
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| Joined: | Sat Jun 13th, 2009 |
| Location: | Netherlands |
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Posted: Thu Jul 8th, 2010 18:15 |
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Very good news Verena
Diesel
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Vit.B12 Hydroxo-cobalamin injection dependant 1995 Sublingual Methyl-cobalamin and Adenosyl-cobalamin tabl. 2008
Osteoporosis 2007 True knowledge exists in knowing that you know nothing
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rudo
Member
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Posted: Mon Jul 26th, 2010 15:34 |
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Hallo Verena,
mit großem Interesse habe ich deine Berichte in diesem Forum gelesen.
Ich (Wohnort Möhnesee, in der Nähe von Dortmund) suche händeringend einen Arzt der mit dem MP in Deutschland arbeitet.
Ich habe Sarkoidose (u.a. Lunge, Stadium 2). Meine Symptome sind
z.Zt. überschaubar, frage mich aber trotzdem ob es sinnvoll ist diese
Therapieform anzugehen um evtl. auftretende Verschlechterungen oder
Folgeerkrankungen auszuschliessen.
Ich vermeide seit ca. 1 Jahr jegliche Form von Vitamin D und meide
Sonnenlicht. Meine Vitamin D 25-Werte sind bis auf 12 mg/l gefallen
während die 1,25 D-Werte sich noch bei 52 halten. ACE ist z.Zt. bei 36.
Leukos sind allerdings bis auf 3,7 gefallen.
Kannst du mir einen Arzt nennen, der mit dem MP arbeitet ?
Vielen Dank für deine Hilfe.
Rudo
Last edited on Mon Jul 26th, 2010 15:39 by rudo
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Verena
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| Joined: | Fri May 15th, 2009 |
| Location: | Germany |
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Posted: Tue Jul 27th, 2010 17:08 |
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For those, who can't read German, I (try to) translate Rudos Posting. I pmd an answer.
Best, Verena
---------
Hallo Verena,
Hello Verena
mit großem Interesse habe ich deine Berichte in diesem Forum gelesen.
with great interest I have read your report on the forum.
Ich (Wohnort Möhnesee, in der Nähe von Dortmund) suche händeringend einen Arzt der mit dem MP in Deutschland arbeitet.
I (living in Möhnesee, near Dortmund) am looking desperately for a doc working with the MP in Germany.
Ich habe Sarkoidose (u.a. Lunge, Stadium 2). Meine Symptome sind
z.Zt. überschaubar, frage mich aber trotzdem ob es sinnvoll ist diese
Therapieform anzugehen um evtl. auftretende Verschlechterungen oder
Folgeerkrankungen auszuschliessen.
I have Sarkoidosis (of the lung et al, second grade). My symptoms are bearable at the moment, I am asking myself nevertheless if it is appropriate to start this therapy in order to stop the disease or associated (following) diseases.
Ich vermeide seit ca. 1 Jahr jegliche Form von Vitamin D und meide
Sonnenlicht. Meine Vitamin D 25-Werte sind bis auf 12 mg/l gefallen
während die 1,25 D-Werte sich noch bei 52 halten. ACE ist z.Zt. bei 36.
Leukos sind allerdings bis auf 3,7 gefallen.
Since about a year I am avoiding every form of Vit D and I am avoiding the sunlight. My VIt D 25-Levels went down to 12 mg/l whereas the 1,25 D-values are still up at 52. ACE is at 36 at the moment, leukos are down to 3,7
Kannst du mir einen Arzt nennen, der mit dem MP arbeitet ?
Can you name a doc, who is working with the MP?
Vielen Dank für deine Hilfe.
Rudo
____________________
Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | North America |
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Posted: Fri Jul 30th, 2010 07:51 |
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Thank you for the translation Verena.
Rudo's questions are now in this thread:
http://www.curemyth1.org/view_topic.php?id=3709&forum_id=2
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Verena
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Posted: Sun Sep 5th, 2010 13:53 |
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Nearly 11 months on the MP
Hello,
I am just back from Holiday and plan to start modified phase 2 next weekend. Still doing very well. A few weeks ago, I thought, I finally got rid of IPs. Then I had a phase, when at days after taking Mino, I felt, what I thought was normal. The next day, I even felt better. Now, since about two weeks, the "better" became my normal state . So, definately time to move on to modified phase two.
By the way, I am getting the MP Medcines in a Pharmacy in Holland.
The Pharmacist offered to divide the 150 mg Capsules in 37,5 Capsules. I ordered 100 pieces. They will cost me about 50 €. I think, that this is a resonable price for not having to split them myself.
Best, Verena
____________________
Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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Ron
Foundation Staff
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Posted: Sun Sep 5th, 2010 21:37 |
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Hi Verena,
Good to hear you are doing so well!
Your Dutch pharmacy made a generous offer to prepare the clyndamycin in small capsules. My own pharmacist decided to deny me that service out of fear of the Health Inspector. I think it is a misinterpretation of this letter from our Health Minister in 2007.
Anyway, 50 Euro's indeed is a fair price. The alternative is the use of the liquid form of clyndamycin (Dalacin). I get that in dry form and can prepare it myself (just add water). Since it's liquid it's easy to divide. This practice lifts the dosing responsibility off the shoulders of the pharmacist and once you get used to the taste it's not that bad.
A drawback is the waste. It only lasts for 10 days according to the inlay and we only use use tiny amounts. This all applies even more to the liquid form of Azithromycin.
Best,
Ron
____________________
Opa's story (RA) | MPKB
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Verena
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Posted: Sat Sep 25th, 2010 21:07 |
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11 months and two weeks
Hi there,
besides having my hair cut, I started modified phase 2 last weekend - on a Sunday evening, stupid thing to do, really... I took the abx before going to sleep and did not think about IP, as I had read somewhere, it would /could take about two weeks until they would "kick in". Well, I was wrong and passed a horrible morning at work. In the meantime Dr. Marshall informed me, that the abx could kick in at any time.
They obviously do... At the moment, a few hours after taking them, I feel like in a mild stroke. I kind of lost contact to my hands. That was an issue, I had in the real strokes, as well, I dropped things and did not have much power in my right hand. This time, its obviously IP, as it fades away after a certain time and comes back, after taking the abx.
Well, not so nice to have, but it showes me, that I was right, doing modyfied phase 2, as clindy adresses the nerves, which in my case obviously is / was the main target of the disease. The reaction shows me, that there is still something to clean up...
@Ron: nice Avatar who did that? Looking forward to seeing you in Heidelberg!
Best, Verena
____________________
Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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Ron
Foundation Staff
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Posted: Mon Sep 27th, 2010 10:34 |
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Verena wrote: @Ron: nice Avatar who did that? Looking forward to seeing you in Heidelberg!
The cartoon was done in 1995 by Dik Bruynestein. Most Dutch MP members will be familiar with his work I think. Yes, it's very nice and since the MP is reversing my aging I will soon look much like that caricature again. 
Except for the glasses that is.
See you in Heidelberg!
Ron
____________________
Opa's story (RA) | MPKB
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Verena
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Posted: Tue Oct 19th, 2010 18:40 |
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One year on the MP - now doing modified phase 2
Well.... what can I say. I am fine. I only have moderate IP when I am ramping the abx. If I compare myself to those "healthy people" on the MP, people, who are doing the MP as a prophylactic treatment and are experiencing nearly no IP, I would say, my nearly non existing symptoms do very much indicate, that I am healthy.
Well, I know. Mustn't use this word. And MS beeing a disease, where you can have very long remissions, one never knows. Time will tell....
Verena
____________________
Migraine s. 1976, Eye Inflammation s. 1992, MS s. 2007, Olmesartan s. Oct/09 Phase 1 s. Mar/10, mod. Phase 2 s. Sept/10
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