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Natalia
Member in Phase 3
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Posted: Tue Aug 7th, 2007 11:32 |
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As I have just started Phase 2 so I thought it would be appropriate to post a (end of Phase 1) progress report on my symptoms and their progression since starting the MP. As I generally don’t post my symptoms unless I need help, so I have been thorough in this progress report so the info can be used as research data. I have had CFS for 8.5 years now, but suffered a dramatic worsening of the condition in late 2005 after an acute viral illness. I have not been able to work since then.
Since going on the MP some symptoms have vanished completely while others have gotten worse which I have attributed to immunopathology. I started the MP at the start of March 2007.
Symptoms before starting the MP
Fatigue: I have been unable to work since Dec 2005. Prior to starting the MP I could walk only approx 20 min a day and could only do 3 hours of desk work a day.
Sleep: Sleep had been prolong and broken in early-through to late 2006, had normalized in late 2006 in both duration and quality (although I required 3mg Melatonin).
Immunity: Has been poor for the entirety of my 8.5 years of CFS only varying in the frequency of illness (from being sick twice a week to at best once a month). I have generally particularly susceptible to upper respiratory tract infections and would often get sick because of over exertion, stress, or any exposure to a virus. Immediately before starting the MP I was getting sick between once every fortnight to once a month.
Migraines: Started in 2003 and in 2006 I started to take daily feverfew tablets migraine tablets to prevent monthly migraines which always occurred with my period.
Hairloss: was heavy in early 2006 (about two handfuls a week- I lost about a third of my hair in about 3 months). It had eased off in late 2006 but by early 2007 I was still losing hair a rate in excess of my ‘pre relapse rate’.
General muscle and joint pain: had been intense in early 2006 but had faded throughout the year. Still had faint joint and sporadic (but not intense) muscle pain in early 2007. Muscles were still tender to touch in 2007.
Lower Backpain: Has been infrequent in the past few years but reasonably intense when it does occur preventing me from leaning over. It would only ever last a few days and I never associated it with my illness but rather my teenage training as a (rather average) gymnast.
Anxiety: A time pressure was all that was require to make me feel stressed and panicky which left me drained and could trigger illness. The pressure could be as trivial as running late for a medical appointment or coffee with a friend. This symptom was particularly bad in early and mid 2006. It has slowly improved since then but was still present albeit in a more mild form, prior to commencing the MP.
Impact of the MP
I have been on Phase 1 of MP for about 5 months which is a relatively long time (I had teething problems). Since that time this has been the change in my symptoms: Migraines have vanished.
Hair loss has normalized
Lower back pain: I had major flare in low back pain in the middle of Phase 1 which
seemed to emanate from the lower spine (may have had muscle involvement too). I couldn’t walk at all for about 4 days and had to use crutches for another 3. But I increased the Olmesartan dosage and it slowly faded and has not come back.Greatly improved (60%): Immunity: When I started the MP I suddenly had 4 respiratory tract infections/viruses in a row. Looking back, I think 3 were herxs and one was probably a virus from my darling brother. After avoiding light more diligently and wearing sunglasses my immunity improved a lot and I did not get sick for 3 months! So a lot of my prior illnesses were probably caused by those pesky bacteria in my upper respiratory tract. However my immune system is still partly impaired. The spell was broken two weeks ago when my dad brought home a bug from overseas I got it instantly and was sicker for twice as long as he was. But nonetheless there has been a vast improvement in my rate of illness which is very welcomeJ Mildly improved (15%): Anxiety: My capacity to cope with time pressures has improved and I get stressed and panicky less often and to a lesser degree. However this symptom was also progressively improving prior to the MP so it cannot necessarily be attributed to it. The same: Muscle pain flared a lot when I started the MP (I yelped during the lightest massage) but slowly subsided as more bacteria were killed. Now I can tolerate a strong massage. Localised pains flare up in various back muscles from time to time but there is no noticeable daily pain. The muscles between my shoulder blades also really start to hurt a couple of days after a big herx, by a massage there usually clears the pain. Mildly worse (-15%): Joint pain also initially flared when I started the MP and then subsided although there is still a constant background pain which intensifies with any Herx (especially in the elbows and knees). Moderately worse (-40%) Fatigue: My walking stamina has at least halved from 20 mins to 5-10 mins a day since starting the MP, although my capacity to do desk work has only dropped from about 3hours to 2-2.5 hours (on a non-herx day). I suspect this is all due to immunopathology as the fatigue really intensifies with a big herx so much so that I have to lay in bed all day and just read.
Moderately worse (-50%) Sleep: Sleep now is consistently broken and often prolonged (depending on how strong the herx is). I usually wake up after only 4-5 hours sleep and have difficultly returning to sleep. I usually succeed after between 2 to 5 hours of listening to meditation CDs etc…4mg Melatonin is no longer effectual at resolving the insomnia, so I am currently experimenting with combining it with other sleep medications like Dramamine (anti-nausea med but does the trick) or Stilnox in pursuit of a good nights sleep. Interestingly, when the herx is really strong, it knocks me out automatically and I sleep long and hard. So there has been clear progress with my health on the MP, but there is still a way to go. The easily discernable herxs are clear evidence to me that CWD bacteria are in fact behind my illness and that I am on the right path with the MP. I am most looking forward to a resolution to fatigue and sleep problems, as the fatigue, in particular, is disabling. But I understand that this is one of the last things to resolve so I am prepared to be patient and march on through the MP!
I hope this is encouraging to other Phase 1 MPers and is sufficiently detailed to be used as research data.
Thank you to all the MP researchers for your innovative and invaluable contribution to medical research and many thanks also to the support team for their ongoing advice and support with treatment. I would msot certainly have not made it this far out without Barbara's prompt and thorough advice!
Keep up the great work!
Natalia
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CFS 9.5 years| 4mg melatonin & 10mg Stilnox/night| 1-25D 6/06 51.25pg/ml, 7/07 29.6pg/ml| 25D Jun06 18ng/ml, Jun07 11.2ng/ml, Oct07 <8 ng/ml| Feb08 5ng/ml| Avoid light| NOIRs| 27Feb07 Ben q6h| Mino 12Mar07| Ph2 4Aug07|Ph3 24Sep08
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Natalia
Member in Phase 3
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Posted: Wed Aug 8th, 2007 01:37 |
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THIS IS A REPOSTING OF MY PROGRESS REPORT WITH ALLERGIES AND LIGHT SENSITIVITY INCLUDED AND FOOTNOTE FIXED. PLEASE IGNORE/REPLACE THE PREVIOUS POSTING.
As I have just started Phase 2 so I thought it would be appropriate to post a progress report on my symptoms and their progression since starting the MP. As I generally don’t post my symptoms unless I need help, I have been thorough so the information can be used as research data. I have had CFS for 8.5 years now, but suffered a dramatic worsening of the condition in late 2005 after an acute viral illness. I have not been able to work since then.
Since going on the MP some symptoms have vanished completely while others have gotten worse which I have attributed to immunopathology. I started the MP at the start of March 2007.
Symptoms before starting the MP
Fatigue: I have been unable to work since Dec 2005. Prior to starting the MP I could walk only approx 20 min a day and could only do 3 hours of desk work a day.
Sleep: Sleep had been prolong and broken in early-through to late 2006, had normalized in late 2006 in both duration and quality (although I required 3mg Melatonin).
Immunity: Has been poor for the entirety of my 8.5 years of CFS only varying in the frequency of illness (from being sick twice a week to at best once a month). I have generally particularly susceptible to upper respiratory tract infections and would often get sick because of over exertion, stress, or any exposure to a virus. Immediately before starting the MP I was getting sick between once every fortnight to once a month.
Migraines: Started in 2003 and in 2006 I started to take daily feverfew tablets migraine tablets to prevent monthly migraines which always occurred with my period.
Hairloss: was heavy in early 2006 (about two handfuls a week- I lost about a third of my hair in about 3 months). It had eased off in late 2006 but by early 2007 I was still losing hair a rate in excess of my ‘pre relapse rate’.
General muscle and joint pain: had been intense in early 2006 but had faded throughout the year. Still had faint joint and sporadic (but not intense) muscle pain in early 2007. Muscles were still tender to touch in 2007.
Lower Backpain: Has been infrequent in the past few years but reasonably intense when it does occur preventing me from leaning over. It would only ever last a few days and I never associated it with my illness but rather my teenage training as a (rather average) gymnast.
Anxiety: A time pressure was all that was require to make me feel stressed and panicky which left me drained and could trigger illness. The pressure could be as trivial as running late for a medical appointment or coffee with a friend. This symptom was particularly bad in early and mid 2006. It has slowly improved since then but was still present albeit in a more mild form, prior to commencing the MP.
Allergies: I had multiple food and respiratory allergies which a desensitization (for respiratory allergies) program was unable to eliminate. The consumption of any food (such as gluten) to which I was allergic would result in stomach pains 4-5 hours later, constipation and a broken night’s sleep. See the first post in this thread for my pre MP RAST test results which were taken after an allergy desensitization program was complete.
Light sensitivity: In retrospect my eyes were mildly sensitive to the light pre MP. I always had to wear dark glasses when driving even if it was very overcast. But as this was the least of my problems, I never gave it a second thought. I had previously thought that laying in the sun made me, at least temporarily, feel better. Even though my condition deteriorated over the summer of 05-06 I never made the connection to sunlight,
Impact of the MP
I have been on Phase 1 of MP for about 5 months which is a relatively long time (I had teething problems). Since that time this has been the change in my symptoms:
Vanished (100%):
Migraines have vanished.
Hair loss has normalized
Lower back pain: I had major flare in low back pain in the middle of Phase 1 which seemed to emanate from the lower spine (may have had muscle involvement too). I couldn’t walk at all for about 4 days and had to use crutches for another 3 days. But I increased the Olmesartan dosage and it slowly faded and has not come back.
Greatly improved (60%): Immunity: When I started the MP I suddenly had 4 respiratory tract infections/viruses in a row. Looking back, I think 3 were herxs and one was probably a virus from my darling brother. After avoiding light more diligently and wearing sunglasses my immunity improved a lot and I did not get sick for 3 months! So a lot of my prior illnesses were probably caused by those pesky bacteria in my upper respiratory tract. However my immune system is still partly impaired. The spell was broken two weeks ago when my dad brought home a bug from overseas I got it instantly and was sicker for twice as long as he was. But nonetheless there has been a vast improvement in my rate of illness which is very welcome. Mildly improved (15%): Anxiety: My capacity to cope with time pressures has improved and I get stressed and panicky less often and to a lesser degree. However this symptom was also progressively improving prior to the MP so it cannot necessarily be attributed to it. Mildly improved: (? %) Allergies: Before the MP began I had multiple food and respiratory allergies (see my first post on this thread for RAST results). While I have not had a follow up RAST test since starting the MP, I have noticed that I no longer get a tummy ache 4 hours after eating gluten. I ate a whole bowl of porridge the other day with no follow up pain. I will test my allergies via blood test at the end of Phase 2. The same: Muscle pain flared a lot when I started the MP (I yelped during the lightest massage) but slowly subsided as more bacteria were killed. Now I can tolerate a strong massage. Localised pains flare up in various back muscles from time to time but there is no noticeable daily pain. The muscles between my shoulder blades also really start to hurt a couple of days after a big herx, by a massage there usually clears the pain. A bit worse (-15%): Joint pain also initially flared when I started the MP and then subsided although there is still a constant background pain which intensifies with any Herx (especially in the elbows and knees). Moderately worse (-40%) Fatigue: My walking stamina has at least halved from 20 mins to 5-10 mins a day since starting the MP, although my capacity to do desk work has only dropped from about 3hours to 2-2.5 hours (on a non-herx day). I suspect this is all due to immunopathology as the fatigue really intensifies with a big herx so much so that I have to lay in bed all day and just read. Moderately worse (-50%) Sleep: Sleep now is consistently broken and often prolonged (depending on how strong the herx is). I usually wake up after only 4-5 hours sleep and have difficultly returning to sleep. I usually succeed after between 2 to 5 hours of listening to meditation CDs etc…4mg Melatonin is no longer effectual at resolving the insomnia, so I am currently experimenting with combining it with other sleep medications like Dramamine (anti-nausea med but does the trick) or Stilnox in pursuit of a good nights sleep. Interestingly, when the herx is really strong, it knocks me out automatically and I sleep long and hard. Substantially worse (>-200%) Light sensitivity: My prior very mild light sensitivity (to the eyes) has become substantially worse on the MP (as expected ). With the glasses off, my eyes start to hurt at very low light levels. My skin is also light sensitive and I have had 2 sun flares so far from a drive in the car and a short walk from incidental radiation on my face. This is further evidence of CWD inflammation. So there has been clear progress with my health on the MP, but there is still a way to go. The easily discernable herxs are clear evidence to me that CWD bacteria are in fact behind my illness and that I am on the right path with the MP. I am most looking forward to a resolution to fatigue and sleep problems, as the fatigue, in particular, is disabling. But I understand that this is one of the last things to resolve so I am prepared to be patient and march on through the MP!
I hope this is encouraging to other Phase 1 MPers and is sufficiently detailed to be used as research data.
Cheers
Natalia
Last edited on Wed Aug 8th, 2007 01:46 by Natalia
____________________
CFS 9.5 years| 4mg melatonin & 10mg Stilnox/night| 1-25D 6/06 51.25pg/ml, 7/07 29.6pg/ml| 25D Jun06 18ng/ml, Jun07 11.2ng/ml, Oct07 <8 ng/ml| Feb08 5ng/ml| Avoid light| NOIRs| 27Feb07 Ben q6h| Mino 12Mar07| Ph2 4Aug07|Ph3 24Sep08
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Natalia
Member in Phase 3
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Posted: Sat Sep 27th, 2008 02:57 |
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End of Phase 2 Report
Improvements on MP so far
Migraines stopped (from start of MP)
Hair stopped falling out (from start of MP)
Back pain (phase 1)
Circadian rhythms back in sync and only sleep 7-8 hours (however I need both melatonin and stilnox to be able to sleep) (Phase 2)
Adaptive immune system has improved during phase 2. I have been sick less often and for shorter periods this year. However, I still get ill with any stress. (Unclear to what extent immune system has improved as being housebound I am only exposed to my family and occasional visitors)
Sinuses and throat flare up less often.(phase 2)
Unchanged symptoms
Anxiety
Sleep is very broken without stilnox and melatonin
Worsened symptoms
Fatigue (2-3 times worse)
Joint pain (daily)
Muscle pain (regular and can be very painful)
Light sensitivity vastly increased (I am unable to tolerate any natural light whether direct or indirect)
Tinnitus (constant)
Orthostatic intolerance has dropped from 4 minutes to less than a minute.
All over body sweating/ temperature deregulation.
Concentration (2 times worse)
Heart strain and palpitations
Unknown
Food intolerances
Comments:
After 18 months I have had some improvements but over all I feel much worse than before starting the MP. I spend about 9 hours out of it in bed everyday where as preMP I used to spend only about 4. However now my symptoms flare in response to antibiotics rather than being random so I realise that they are herx symptoms and not a deterioration in the condition. In saying this, many of the improvements I had noted at the end of Phase 1 have been since swamped by herxs in Phase 2. I react strongly to zith.
As someone who has had CFS for 9.5 years now I have realised that my illness is quite progressed and it will take a while to reverse the bacterial load. The herxs a strong and never ending and really restrict my ability to go out be social (which I could do before th MP) or even go outside at all because of light sensitivity My motivation has been waning the past couple of months so I am considering taking an abx break over Christmas so i can at least enjoy life and check on my progress before getting back to the grind. I think this would be good for my mental health, but I will see how manageable Phase 3 is first. I’ve noticed that people with strong CFS tend to improve somewhere between the 18-36 month mark so hopefully it will turn around next year, if not I will have to revise my treatment options.
____________________
CFS 9.5 years| 4mg melatonin & 10mg Stilnox/night| 1-25D 6/06 51.25pg/ml, 7/07 29.6pg/ml| 25D Jun06 18ng/ml, Jun07 11.2ng/ml, Oct07 <8 ng/ml| Feb08 5ng/ml| Avoid light| NOIRs| 27Feb07 Ben q6h| Mino 12Mar07| Ph2 4Aug07|Ph3 24Sep08
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