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fix22
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| Joined: | Thu Feb 21st, 2008 |
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Posted: Sat Aug 8th, 2009 23:41 |
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Hi Everyone,
Thank you for replying Barney, it looks as if you were right, I was unintentionally going too fast (even though I was very cautiously following the MP guidlines to the letter and my Drs advice), the IP just suddenly crept up on me . Will go much slower from now on .
Sorry that I haven't written recently, but here is an update.
Day 267 on MP, day 187 on Mod. Phase 2.
In mid May I was on mino 100mg and clind 150mg when the retina/optic nerve of my right eye became inflamed and my vision in that eye became compromised, patchy. My prescribing Dr. dropped my meds down to mino 100mg 48hrly (phase 1). My eye inflammation cleared up gradually and then near the end of May I was given permission to start on Mod phase 2 again  . At the beginning of July, now on mino 100mg and 1/2 a clind and with very minor general IP I had my MP bloods done and was found to have inflammation in the kidney dept. (barely any aches or pains there as warning).
EGFR was 35 (normal >90), Urea 14.5 (normal range 2.5-6.4),Creatinine 147 (normal range <115), Total protein 62.6 (normal range 64-82). (some minor anaemia also)
once again I had to lower my antibiotics back down to 50mg mino and 1/4 clind and from the 5th of July that is the dose that I have remained at. IP continues to be very minor which is great as I can do a little more than usual around the house, with the children, etc.  . Just waiting for my kidney function to improve (still barely any aches/pains in that region).
Results of renal tests two weeks later show: EGFR 41, Urea 8.1, Creatinine 129, Total protein 65.1 (normal!) (anaemia not changed) All kidney results have improved, but not enough to increase the antibiotics yet.
Continue to take Benicar 40mg 6hrly as standard, more often and also sub lingual doses as necessary. No other medication. Drinking plenty of water and taking extra salt.
After 8.5 months on the MP I have noticed some improvements , the main ones being no IBS type symptoms, BMs regular, no constipation, no longer have jumpy retinas and can now read 100-200 pages of writing before getting dizzy/headache/feeling weak/faint/unable to focus or balance properly. Pure bliss. Pre-MP could only read half an A4 side of writing before getting sick. Cardiac rhythm irregularities have lessened, skin is softer, hair glossier and softer, sleep is much improved, pre-MP had beginning of fungal nail infection, but it has all gone, periods a lot less heavy and painful (a bit irregular tho). Generally feel more physically stable, less fragile and less anxious. Unfortunately some of these symptoms do return as IP intermittently. Am fully committed to the MP.
The things that I am not so happy about (but I guess are an essential part of the journey to get well) are dramatic weight loss (at beginning of MP), I eat enormous amounts, but only occasionally put on a pound or two which within a few days I lose  . Instead of looking like a beautiful, elegant, slim super model (wishful thinking), I look like a bag of bones with no womanly shape to me at all, every last bit of padding has vanished. My face is gaunt with deep lines from my nose to my lips, blotches of darker pigmentation on my forehead and neck (forehead ? due to previous sun damage, neck patches new) extended dark circles around eyes, although especially under eyes (had some dark circles from age 19 onwards, but these are now industrial sized  ). Pre-MP I always looked young for my age, but I seem to have aged significantly in the last few months. Its a good job that I live in a light restricted area and wear dark glasses, shouldn't frighten too many people that way  . I guess that the body is working flat out trying to cleanse itself of these bacteria and looking worn out is one of the effects. Will these things eventually improve on the MP?
Really pleased with both daughters on MP: Doing very well and seeing some lovely improvements. Third daughter to start MP in July 2010 after exams.
Take care everyone
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cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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fix22
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Posted: Tue Oct 20th, 2009 00:15 |
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Hi Everyone,
Just an update! Day 339 on MP, continued from above.
Am on Beni 40mg 6hrly with extra as needed. Unfortunately on 09/09/09 (day 299)went back onto phase 1 , 50mg mino 48hrly for a couple of doses and then 25mg mino 48hrly. This was due to uncontrollable cardiac IP , mainly rhythm irregularities (v v fast, too fast, too slow, missed beats, elongated beats, etc) and chest pain, pain down left arm and in left axilla area, shortness of breath. I have now had 16 doses of mino 25mg 48hrly and still have too much cardiac IP to move the mino up safely. Renal tests continue to be as unsatisfactory as before, but have not deteriorated further, am having them repeated on Friday. Have had bouts of increased photosensitivity and lightheadedness recently. Aches and pains in various places, but all tolerable. Will just have to sit it out, wish things were going a little smoother/faster. Especially can't wait for the cardiac problems to be cured. Am grateful to be on the MP though .
Eldest daughter progressing very well, 11.5 months on MP and on phase 3 (top doses of phase 1 and phase 2 antibiotics and 1/4 clind).
Youngest daughter also progressing very well, 6 months on MP and on Modified Phase 2 (top dose mino and 3/4 clind).
Middle daughter still on target to start MP in summer, after exams.
Take care everyone.
____________________
cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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Barney
Moderator
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Posted: Tue Oct 20th, 2009 03:21 |
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Hello Fix,
In your place, I would stop the Mino and stick w/Benicar 4hrs (if you can handle that often) w/20mg under the tongue.....until you calm your little heart down....then reconsider the Mino.
Folks w/strong cardiac IP....should take it very slow. We don't have to race to the finish line, we just have to get there no matter how long it takes to get there.
We seem to forget that it took us a long time to get this sick and we will need time to get well.
Renal tests can/will be out of wack a lot, but will come to a better ending, please be patient. (I only have 1 kidney doing MP).
Light sensitivity is a real pain, please be sure to wear your Noirs outside.
Please be sure and drink plenty of water, you will be surprised how much that helps. I even get out of wack forgetting to drink and then amazed at how well I feel w/plenty of water. As a matter of fact I will be right back, I need a drink.
Okay, I'm back, glad to hear your children are progressing well on MP.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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matthew.gatenby
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Posted: Tue Oct 20th, 2009 11:11 |
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Hi Fix ,
just a hello , you sound like you are having your ups and downs and hope you hang in there ..
i too was looking older for a while but i seem to be getting age back i think it is a strange thing ..
i am also getting hairier .. was never a real hairy man but lucky me 33yrs old and puberty is hitting me
i wanted to give you a laugh and just an expression of interest in your cardiac symptoms ..
have you been to a doctor and had it checked you seem to have had blood tests etc , but i just want to make sure if you have not that you will go and get and ekg ecg as it is fundamental.
sometimes its ip but it is better to be safe than sorry.
if you have disregard my comments ..
and take it easy .. no race here
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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treefrog
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Posted: Sat Oct 24th, 2009 19:47 |
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Thank you so much Barney and Matt for your support .
Got my renal test results back and they are equally as bad as before , also Hb has dropped significantly . Dr has advised me to stop taking the mino for the time being, so I haven't had any since Tuesday 20/10/09 .
I could do with some advice/HELP as my cardiac IP (since coming off mino) has increased ten fold. On Friday morning I had a very fast heart rate at 4.30 am, which luckily settled with a 20mg s/l benicar. This morning all hell broke loose , chest pain, fast heart rate, pain in left axilla, pain up left side of neck, pain down left arm, anxiety, adrenaline bursts. I started on 3 hrly 40mg benicar with a 20mg benicar s/l also 3 hrly. Unfortunately, it is barely holding the problem at bay and I am worried.
Is there anything else that I can take to dampen the IP further or take the Benicar in a more efficient way?
How much benicar can I take safely in 24 hours?
If I end up in casualty what sort of antiinflammatory medication can the Drs administer that is MP friendly? They will look to me for advice or take me off the protocol. I would like to know my options.
Why does my IP always go through the roof in the early hours of the morning? I just about got it under control by midday, but it is already revving up again now its 6pm.
My monitoring Dr is out of the country for two days and my prescribing Dr is not from the UK and is hard to get hold of on a weekend.
I had a thorough cardiac work up prior to starting on the MP, the ECG was normal despite meny cardiac symptoms. I had a cardiac monitor implanted into my chest wall for two years, but despite many rhythm disturbances including some very fast runs, my cardiologist chose to believe that the machine was faulty rather than listen to me or see the evidence . My tilt-table test was also halted for safety reasons (by the technologist performing it and the Dr overseeing it) as my heart rate went far too fast and my blood pressure dropped way too low during testing (according to their guidelines), they told me that my response to the test was grossly abnormal, but my cardiologist chose to ignore the results of this test too as I hadn't passed out during it (the gold standard apparently).
Any advice would be most welcome, I am actually very frightened of not being able to control the IP .
Thank you so much.
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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
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fix22
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Posted: Sat Oct 24th, 2009 19:53 |
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| Sorry, above post should have been on fix22 login NOT treefrog (treefrog is fine)
____________________
cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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fix22
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Posted: Sat Oct 24th, 2009 19:54 |
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Thank you so much Barney and Matt for your support .
Got my renal test results back and they are equally as bad as before , also Hb has dropped significantly . Dr has advised me to stop taking the mino for the time being, so I haven't had any since Tuesday 20/10/09 .
I could do with some advice/HELP as my cardiac IP (since coming off mino) has increased ten fold. On Friday morning I had a very fast heart rate at 4.30 am, which luckily settled with a 20mg s/l benicar. This morning all hell broke loose , chest pain, fast heart rate, pain in left axilla, pain up left side of neck, pain down left arm, anxiety, adrenaline bursts. I started on 3 hrly 40mg benicar with a 20mg benicar s/l also 3 hrly. Unfortunately, it is barely holding the problem at bay and I am worried.
Is there anything else that I can take to dampen the IP further or take the Benicar in a more efficient way?
How much benicar can I take safely in 24 hours?
If I end up in casualty what sort of antiinflammatory medication can the Drs administer that is MP friendly? They will look to me for advice or take me off the protocol. I would like to know my options.
Why does my IP always go through the roof in the early hours of the morning? I just about got it under control by midday, but it is already revving up again now its 6pm.
My monitoring Dr is out of the country for two days and my prescribing Dr is not from the UK and is hard to get hold of on a weekend.
I had a thorough cardiac work up prior to starting on the MP, the ECG was normal despite meny cardiac symptoms. I had a cardiac monitor implanted into my chest wall for two years, but despite many rhythm disturbances including some very fast runs, my cardiologist chose to believe that the machine was faulty rather than listen to me or see the evidence . My tilt-table test was also halted for safety reasons (by the technologist performing it and the Dr overseeing it) as my heart rate went far too fast and my blood pressure dropped way too low during testing (according to their guidelines), they told me that my response to the test was grossly abnormal, but my cardiologist chose to ignore the results of this test too as I hadn't passed out during it (the gold standard apparently).
Any advice would be most welcome, I am actually very frightened of not being able to control the IP .
Thank you so much.
____________________
cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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matthew.gatenby
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Posted: Sun Oct 25th, 2009 02:16 |
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Hi ,
i think you are doing the right thing at the moment, give it time to settle...
mabye change your benicar schedule take a tablet every 4 hrs but when are you taking them .. if your getting cariac ip about 6am try waking at 2am and taking a tablet.
also how much light exposure are you getting it could be hitting you hours later ..
perhaps if you cannot avoid the light try sunscreen and use your glasses inside for a bit i dont know your current situation in regards to this but it would be something i would consider
finally are you eating or drinking anything different ?
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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fix22
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Posted: Sun Oct 25th, 2009 23:51 |
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Hi Matt and everyone,
Thanks so much for replying to my SCARED OUT OF MY WITS last posting, Matt. I really appreciate it. Can't help, but panic when my heart starts playing up. Even more terrifying at night-time.
Luckily the pain and rhythm situation is a bit more under control now . I stayed on 3hrly benicar at 40mg and 3hrly benicar at 20mg s/l for approx. 48 hrs, now i'm just about managing Benicar 40mg 4hrly with taking benicar 20mg s/l for breakthrough pain.
The only thing that changed prior to this event was me stopping my mino (on Drs orders). Wow its amazing how much antiinflammatory effect the mino has and how much inflammation occurs when the mino is removed.
I don't go outside as yet as I am still too fatigued and my heart plays up on any mobilising even for short distances, so no daylight exposure so far. Home is dimly lit, do not need to wear noirs indoors, only to answer door. Computer and tv are dimmed. Eating and drinking ok (still no weight gain tho. ). Have to work a bit more on my salt intake, but blood levels are just about ok.
As it looks as if I will be on 'Benicar only' for a while, I wonder if anyone can explain to me how to proceed for max efficiency. Should I be aiming for being comfortable on 6hrly beni, 5 hrly beni, 4 hrly beni? A bit confused .
Any advice much appreciated. Thank you so much  .
____________________
cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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IngeD
Moderator
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Posted: Mon Oct 26th, 2009 09:28 |
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Hi fix22.
You may need to experiment with the benicar dosing yourself. I find that when my IP is too high I need to stay on 4 hourly benicar sometimes with additional s/l dose. Once it settles down I can work my way back to 6 hourly. However...since being on benicar only I seem to spend most of my time on 4 hourly benicar to keep the IP under control.
You are right re the mino. It does have anti inflammatory properties. So that could explain your increase in symptoms since going off mino.
Keep a record of symptoms as you experiment with the Benicar and see what works best for you.
All the best. IngeD
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Rickettsiosis;PerNeurop;Chron Bronch&cough; adhesions; IBS; pre-diabetes; IR; HTN; 1,25-D of 50.83 pg/ml;Benicar 40mg q6h start 24Jan07 Mod Ph2 start 28Mar07;25D(ng/ml):26.4 19Dec06;16.4 24Mar07;12.8 22Jun07
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fix22
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Posted: Tue Jan 19th, 2010 22:38 |
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Thank you IngeD for replying to my post and offering such good advice and reassurance .
Just a quick update as to my situation at the moment. 1 year and 66 days on the MP.
Previously reached full dose mino and clind, but severe inflammation in eye, then heart then kidneys saw me coming off the clind and then the mino in quick succession. Last took mino on 19th October 09. Since then have taken Benicar only. Took it at the dose of 40mg 4 hourly for a while with no problems, then took it 4.5, then 5, then 5.5 hrly for a while. Throughout took 20mg s/l as necessary. Now am on 40mg Benicar 6hrly, generally with very bearable IP.
I have had some blood tests back today (taken at 7.30am on 18/01/10 ) which are a mixed bag and i'm a bit confused as to what to do .
FULL BLOOD COUNT: Hb 108 (in Oct 09 was 104), RBC 3.62 (in Oct 09 was 3.47), PCV 0.325 (in Oct 09 was 0.312) Neutrophil levels are back to normal (in Oct 09 level was low at 1.94). My Dr and I are thrilled with these results as they are moving towards normal levels .
RENAL FUNCTION: Total protein 61.7 (in Oct 09 was 62.4), should be between 64-82. potassium 5.2 (in Oct 09 was 5.0), should be between 3.5-5.0. Urea 13.6 (in Oct 09 was 14.5) should be between 2.4-6.4. Creatinine 142 (in Oct 09 was 131) should be <115. EGFR 36 (in Oct 09 was 40) Should be > 90. Dr and I worried with these results .
I don't understand why my renal function is not improving and am very worried about the rising potassium level (I have heart rhythm/chest pain IP intermittently) . I do not eat any foods high in Potassium. How could I get the Potassium down to healthier levels? More water? Will taking more frequent Benicar (which I don't feel that I need at the moment) increase the potassium level or maybe cut the inflammation further in the kidneys (no kidney pains) so that they can perform better and therfore help to eliminate the excess potassium more efficiently? I'm confused, monitoring Dr is confused!!!!!!
Generally moderate to mild IP, mainly cardiac(rhythm irregularities, too slow, too fast, ectopics, elongated beats, chest pain) worse on mobilising. Breathlesssness on mobilising, occasionally at rest too, cramps, especially at night and in all muscle groups (neck abdo, arms, hands, fingers, legs, feet toes, breathing muscles etc), itching (mainly scalp and face), fatigue, lymph node aches, lightheadedness, low mood/irritability, the odd joint pain/tooth and gum pains, irritable legs, numbness in extremities, odd headache/bowel ache, gynae aches. starting to put on a tiny bit of weight at long last, but still painfully thin. All tolerable at the moment.
Still housebound, darkened home, noirs only for answering door, light sensitivity improved lately as can tolerate an artificially lighter environment at home. D25 results not back yet.
Best wishes to everyone .
____________________
cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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jcwat101
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Posted: Wed Jan 20th, 2010 05:54 |
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If you find a higher Benicar frequency palliative, then perhaps you should go back to the dosage every 4 hours. Although the change is slight, in your lab values between now and October, maybe it is from lowering the Benicar dosage? Trevor usually recommends increasing to every 4 hours when IP seems high, as you know, even kidney IP.
It is my understanding that drinking a lot of water (eg. 8 glasses a day) does help, but you may want to ask your doctor.
Perhaps you don't eat high potassium foods like bananas, but maybe there are some of the moderately high ones that could be reduced. You can google that and find out more. But you may just want to try an increase in water and/or increasing Benicar and retest.
Once IP gets going very strong, it can stay that way for quite a while, so it may just be that your own immune system has kept the kidney IP going strong, despite some of your other symptoms improving.
Joyce Waterhouse
PS You may want to assess your diet and see if you get enough magnesium (may help cardiac symptoms)
____________________
20 years with CFS/FM/Lyme/IBS, mostly recovered from MCS and food sensitivities after 4 years on MP, http://SynergyHN.com
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Deedee
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Posted: Wed Jan 20th, 2010 16:35 |
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I had some bad kidney labs and drastically dropped back on antibiotics from mid Phase II to mid Phase I for 60 days and all returned to normal. These were my values:
Urea Nitrogen 46H (7-25 mg/dL)
Creatinine 1.16 (.50-1.2 mg/dL)
eGFR Non-Afri American 48L (> or = 60 mL/min/1.73m2)
Bun/Creatine Ratio 40H (6-22)
My doctor explained to me that when there is a lot of bacterial killing, it will cause a kind of "traffic jam" of dead bacteria and white blood cells in the lymph nodes and kidneys as the body tries to process the debri and he told me not to worry. He also told me he hates the eGFR because it is a calculated value, based on the other results and factors like race, gender, age and it unnecessarily scares people. My family practice doctor said the same thing.
~~~~~
Also Trevor Marshall sent this to me:
During my presentation at West China Hospital i covered just this scenario when trying to explain how important it is for medicine to understand immunopathology. You might look at the transcript or the video for more info:
The video of the seminar is at:
http://www.vimeo.com/2599416
and a transcript is available at http://AutoimmunityResearch.org/transcripts/WCH_2008_seminar_transcript.pdf
This is what I told the Doc I spoke with earlier: The BUN rises because NO (nitric oxide) is given off as the bacteria in the microbiota are killed.
~~~~~
In addition to dropping back on the antibiotics, I also used Quercetin and guaifenisen during that time to dampen IP. I did not reduce or increase the Benicar but stayed at 4X per day. That is what worked for me. At the time I had the run-away IP, my D25also fell from 25 to 14, which I think may have been part of the reason I had such a big IP surprise. What is your D right now?
I am not trying to minimize your cardiac symptoms in any way, but wonder if you , have you ever been told you might have panic attacks? I used to have panic attacks when I was in my 20's and it was very scary with racing heart, dizziness and pains in my chest. My daughter also had them and her heart rate would go to 180's and skip beats. Most often it would just seem to come from out of nowhere. It is a serious health issue.
I hope you feel better and the IP lessens for you. Last edited on Wed Jan 20th, 2010 16:37 by Deedee
____________________
Sarcoidosis lymphopathy Dx 7/26/08| start MP 8/15/08|D25-15| Back to Phase I All labs normal except lipids high.100 mino/Benicar Quercetin, guaifenisenABC of MP|
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fix22
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Posted: Fri Feb 5th, 2010 21:41 |
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Thank you jcwat101 and Deedee for replying I really appreciate it..
I have increased the benicar to 40mg 5x a day, once again and symptoms have improved marginally. I am passing a bit more urine now and slightly more frequently (although I have increased my intake of water too). I will be getting my renal function re-tested in a week or twos time. Kidney area is aching, but quite tolerable. Only hope my potassium level doesn't increase with the extra benicar doses ! My kidneys showed inflammation and incompetency prior to starting the MP, but have as expected deteriorated more in function over the year or so that I have been taking the antibiotics and benicar. I am happy to stay on benicar alone until the function is restored to a more healthy level (just surprised at how much inflammation is in them and how long the process is taking ).
Deedee-I know how dibillitating panic attacks can be as my daughter has suffered from them for quite some time (on phase 3 now and only suffers v v mildly and v v occasionally from them now )and I also understand that they are of a physical nature rather than psycological, but I don't have them myself. My heart will strike up wierd rhythms at the drop of a hat even when I am calm, relaxed and happy. The ectopics, elongated beats, fast/slow rhythms and plainly erratic rhythms occur whenever and wherever, but I am guaranteed to have them if I exert myself physically, walking, laughing, cooking, cleaning, etc or if I have caffeinated foods/drinks (which I avoid like the plague) or if I am remotely anxious, nervous, scared or excited (adrenaline rise). I can't wait for them to resolve as they worry me the most and as well as the fatigue keep me stuck at home. My Father died far too young of cardiac disease (MI). He was a life long non smoker, drank very little alcohol, was not overweight, played lots of sport, cycled to work, ate healthily and was of a happy disposition, very much a family man. Unfortunately he did have malaria twice as a child, scarlet fever, recurrent tonsillitis, etc., etc. so I guess maybe that is where my cardiac bacteria came from . At least my brother, my 3 daughters and myself have a chance of regaining our health with the MP, my Dad would be happy to know that.
Take care everyone .
____________________
cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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fix22
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Posted: Tue Feb 16th, 2010 01:19 |
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I could do with some help/advice please (not about me for a change ).
My 14 year old daughter has been on the MP for 10months and has just started phase 3. So far she is doing brilliantly well and we are thrilled with her progress to date.
She started the MP in April '09 at age 13, her main diseases/symptoms were: Morphea, scleroderma, RA, asthma, eczema, IBS, cardiac rhythm irregularities, nausea/loss of appetite, severe fatigue, migraines, insomnia, anxiety, concentration/memory problems, mood swings, food intolerances, itchy skin, to name but a few.
For two and a half years prior to starting the MP (age 10)she only had Morphea as a diagnosis and other than that was leading a fully active life, loved gymnastics/sports, attended school full time, etc. Although it was obvious to me that she had serious 'skin lesions' from the age of 4 years, getting the Drs to take notice was very difficult.
At age 10, 2.5 years before starting the MP, she was treated with, three bolus doses of high dose intravenous steroids in quick succesion, months of oral steroids followed and added to those was methotrexate. Within months of starting this regime she was getting breathless on minimal exertion, her back and joints were agony, stiff as well as painful, she was finding it near impossible to walk and write, she lost her appetite due to constant nausea and regurgitation and pain in her oesophagus. She basically fell apart which was frightening and heartbreaking to watch.
Since starting the MP I am pleased to say that she is a changed person . Her monitoring Dr was trained by Dr Brown of The Roadback fame, so has some idea of bacteria causing RA. Her prescribing Dr is very experienced in the MP and is from Canada. She is being overseen by her local hospital Drs (the ones that oversaw her on her previous treatment), they are keen to keep a very close eye on her and are highly suspiscious of the MP (esp. the vit D bit). The professor that prescribed the steroids and methotrexate has not contacted us since we removed her from his research programme (he has always maintained that her health deterioration on his research plan was 'growing pains' ).
She went to her local hosp just before Christmas to see the general peadiatrician and rheumatologist and they seemed quite suprised by her progress, but still cautious and quite skeptical. The rheumatologist is by far more interested in her progress than the gen. pead. They requested a bone scan for her due to her D25 being <4. Her father (a Dr, who jumps from understanding the MP to not understanding the MP) and I (ex nursing sister)have explained in person and in writing on many occasions that her D125 was of average/to slightly above average levels before the MP, her ratio was >4.5 which showed a dysregulation of her D metabolites and strongly suggested a chronic inflammatory disease process present (her symptoms at that time would have backed that theory up). She drinks milk and loves cheese/butter, they all contain calcium and vit D.
They are quite eager to write a medical paper for publication in a medical journal on her 'new' treatment, but I feel that they need more non MP based information regarding the vit D issue (ricketts, osteoporosis, other bone deficiencies). The radiologist has told us, off the record that her bone density is slightly on the low side . We are not worried, but know what the Drs will be thinking. I am waiting for a phone call any day to tell me that she needs high dose vit D supplementation . This will not be the first time that they will have insisted on supplementation.
QUESTIONS:
Can you direct me to research that has not been produced by Prof Marshall/MP, but is relevant to bone disease? Any Vitamin D research that is relevant and also any evidence (once again not Prof M/MP linked) to show that steroids and/or methotrexate cause bone depletion (especially related to being given to children at the time of puberty).
Thank you so very much, I don't know where to start .
(sorry so long)
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cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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Deedee
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Posted: Tue Feb 16th, 2010 02:41 |
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One idea might be to look into the research articles referenced at the bottom of some of Trevor's and Amy's papers, for example, this one:
http://autoimmunityResearch.org/preprints/BlaneyAnnals2009Preprint.pdf to see if the information you are seeking is there.
There are also references to research in regard to bone density outside of the MP in these two articles:
http://bacteriality.com/2007/09/15/vitamind/
http://bacteriality.com/2007/10/24/brain_lesions/
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Sarcoidosis lymphopathy Dx 7/26/08| start MP 8/15/08|D25-15| Back to Phase I All labs normal except lipids high.100 mino/Benicar Quercetin, guaifenisenABC of MP|
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phillyguy
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Posted: Tue Feb 16th, 2010 02:44 |
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This study is in this month's (2/2010) issue of "Bone". The effects appear to be genotype specific. Not sure if this helps but the study was done on a female population of similar age to your daughter.
http://www.ncbi.nlm.nih/.gov/pubmed/19735754?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1
Does vitamin D supplementation of healthy Danish Caucasian girls affect bone turnover and bone mineralization?
INTRODUCTION: A high peak bone mass may be essential for reducing the risk of osteoporosis later in life and a sufficient vitamin D level during puberty may be necessary for optimal bone accretion and obtaining a high peak bone mass. Dietary intake and synthesis during winter of vitamin D might be limited but the effect of vitamin D supplementation in adolescence on bone mass is not well established. OBJECTIVE: To investigate the effect of supplementation with 5 and 10 mug/day vitamin D(3) for 12 months in 11- to 12-year-old girls on bone mass and bone turnover as well as the possible influence of VDR and ER genotype on the effect of the supplementation. METHODS: The girls (n=221) were randomized to receive either 5 mug or 10 mug vitamin D(3) supplementation per day or placebo for 12 months. Whole body and lumbar spine bone mass measured by DXA and pubertal status were determined at baseline and after 12 months whereas physical activity and dietary intake of calcium and vitamin D were assessed at baseline. Serum (S) 25-hydroxyvitamin D (25OHD), S-osteocalcin, S-parathyroid hormone, S-calcium, S-inorganic phosphate, urinary (U) pyridinoline (Pyr) and deoxpyridinoline (Dpyr) were measured at baseline and after 6 and 12 months. RESULTS: The S-25OHD concentration increased (p<0.001) relative to the baseline values in the groups receiving either 5 mug/day (mean+/-SD; 11.0+/-10.3 nmol/l, baseline 41.9+/-17.6 nmol/l) or 10 mug/day (13.3+/-11.8 nmol/l, baseline 44.4+/-16.6 nmol/l) vitamin D(3) for 12 months compared to placebo (-3.1+/-9.8 nmol/l, baseline 43.4+/-17.1 nmol/l). There was no effect of vitamin D-supplementation on biomarkers for bone turnover or on whole body or spine bone mineral augmentation. However, vitamin D supplementation increased whole body bone mineral density (BMD) (p=0.007) and bone mineral content (BMC) (p=0.048) in the FF VDR genotype but not in the Ff or ff VDR genotypes. CONCLUSION: Supplementation with vitamin D (5 or 10 mug/day) over 12 months increased the S-25OHD concentration but there was no effect on indices of bone health in the entire group of girls. However, there was an effect on BMD for a subgroup with the FF VDR genotype indicating an influence of genotype.
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Joyful
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Posted: Tue Feb 16th, 2010 06:27 |
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Here are a few links ... there are more in the MP knowledge base... Paul has spent many hours linking to published research in the KB articles:
Children and the Marshall Protocol
Rickets (osteomalacia)
Osteoporosis and osteopenia
Physicians' concerns about the Marshall Protocol
Science behind vitamin D
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fix22
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Posted: Tue Feb 23rd, 2010 00:29 |
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Thank you so much Deedee, phillyguy and Joyful, really much appreciated, some great research there, i've ploughed through it and selected some to show the Drs on our next visit. Thank you once again , fix.
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cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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fix22
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Posted: Tue Feb 23rd, 2010 00:45 |
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Just a quick note to say:
My renal blood tests are back and at long last seem to have improved a bit .
Total protein 60.7, Sodium 137, Potassium 4.9, Urea 11.1, Creatinine 129, EGFR 41
Urine output has also improved . Still have a long way to go, not very patient .
QUESTION: All going in the right direction except the Total protein, not sure why it would be dropping when all of the others are improving, any ideas? Can I do something to raise it? I do not have protein in my urine, all else -ve except +++ to leucocytes.
I have been on 5 hourly Benicar for the past few weeks with s/l as necessary and will continue with this until kidneys improve more and can start to tolerate antibiotics.
Thank you and best wishes, fix.
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cfs/lyme,multiple active bacterial/viral infections since 1991 cardiac rhythm probs/chest pain/balance/fatigue. No Ds in diet,darkened home,housebound. 10/08 D25 4.8 phase1 14/11/08, 01/09 D25 4.0 Mphase2 04/02/09 Re-start phse1 09/09
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