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paulalbert
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| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 859 |
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Posted: Wed Mar 16th, 2005 20:06 |
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This is a private thread made public (of course, with permission). Thought some of the uninitiated would appreciate reading this.
Paul
_____Original Message_____
From: Ames
Date: 2005-03-15 17:28:53
Subject:
I've been reading posts and notice that you are on phase 3 of the MP and also have CFS. I am 23 and have had CFS for three years and am planning to start the MP. Just wanted to know-do you feel you made the right choice by doing the MP, do you feel better? Should I do it? I have what it takes, I just want to make sure this works for CFS people also
Thanks for any advice,
Amy
_____Original Message_____
From: paulalbert
Date: 2005-03-16 03:48:27
Subject: Re:
Amy,
Funny you should ask. I was just wondering the same thing myself-- exactly how am I doing? So I JUST started an "antibiotic vacation" (though I'm continuing with the Benicar). It has been about 9 months since I took a break and I just want to see how I am doing. We'll see how I feel in a week.... I'm only six years older than you but I'm young and impatient. I want results NOW. This process takes time. It takes organization and it means finding a doctor willing to give this a shot.
What symptom improvement have I noticed? I had an issue with food-- certain kinds of food made me feel terrible. Also, I had these waves of melancholy which I can only assume were related to my condition. Those went away rather quickly (the food problem in the first weeks, and the melancholy in the first months).
My sleep is also better, but sometimes those gains are clouded by the phase these three antibiotics which are the pharmaceutical equivalent of a kick to the groin. Hence, the antibiotic vacation.
Our conditions are probably more alike than those of a lot of folks on this board, but even within the CFS subset there is considerable variability. So it's hard to say exactly how you'll react.
Should you try out the MP? Yes, absolutely. At the very least, get going on the regular administration of Benicar. (That yielded the most noticeable results for me.)
Do you have "what it takes"? I'm sure you do. I don't understand people, especially young ones, in our position who might say otherwise. Either you want to get better or not. What other choice do you have?
I am pleased with my decision because I have indeed become better. The only question remains-- how much better will I get?
Paul
p.s. Would you object to having this conversation moved to one of the forums? (Other people might be able to benefit from your question.)
_____Original Message_____
From: Ames
Date: 2005-03-16 07:21:19
Subject: Re: Re:
Hi Paul,
Thanks for your input. I would not mind moving this conversation to a forum at all, in fact I think it would be great if everyone with CFS doing the MP could write a little about how they have reacted so far to the protocol.
The MP is a great hope for me-I refuse to give into my CFS, ever since I have been sick I have sought out every doctor and possible treatment, but obviously without much success. Before I got sick, I was so active and driven that it is hard for me to adapt to processes like the MP that don't have immediate results, however I am so thankful there is this option to actually get well despite the long process.
Right now that I haven't even started, it seems a little daunting, knowing that what I embark on will take years.
It is encouraging that those first symptoms of your's disapeared. My symptoms have changed a lot during the years that I have been sick, so I am actually interested to see what symptoms appear or reappear during the MP. Did you herx from just the Benicar?
Also, how much of a normal life would you say you are able to live? Have you started to feel well enough to work or do things outside of the house? Has avoiding light really altered your life?
We should post this on a board-I'd love to know how everyone with CFS has reacted!
I hope the antibiotic vacation goes well!
Amy
_____Original Message_____
From: paulalbert
Date: 2005-03-16 08:20:54
Subject: Re: Re:
Amy,
It's daunting, but the alternative is resigning yourself to the fact that this probably will never go away. I don't know about you but that is not acceptable to me. Now, being younger, your chances for recovery are as good as anyone's.
The herxing thus far has actually been rather light, but then maybe my experience will be different from yours, and yours may be different from another's. Don't take anything from granted when ramping up your antibiotics!
Benicar made me feel better within weeks. The dizziness was an unpleasant side effect but that went away shortly. And that side effect pales in comparison to almost suddenly being able to eat foods I hadn't been able to tolerate before.
I have trouble wrapping my head around this discussion of "making accommodations". Wearing sunglasses and staying out of the sun may be an accommodation, but it is nothing compared to having to take one to two naps a day or having to contend with these waves of melancholy. I would have done a whole lot more to make those symptoms go away.
As for the toll the antibiotics take on a person, they really haven't made life that much tougher for me. It's not like I was hang-gliding before. I felt awful. I couldn't go out. Can't drink. I had to have a low/no stress lifestyle. Same deal.
While it may take years, it is my opinion you will most likely "get a return on your investment" in 4-6 months.
Paul
_____Original Message_____
From: Ames
Date: 2005-03-16 10:23:20
Subject: Re: Re:
I agree-I will not accept the idea that I will feel like this forever. I was more concerned about how difficult it is to avoid light, basically because I want to do this right-so I am wondering if people can manage to successfully avoid light if they leave the house. But as for making accomodations, there is literally nothing I wouldn't do to feel better. Avoiding light is nothing, if I can feel any better in the process. As you said, I feel terrible. I have already had to give up going out, drinking, exercise, a whole bunch of foods, travelling, essentially everything that made up my life before I got sick. So it's not like it can get much worse!
It's a strange point in my life right now because I am finally graduating from Georgetown (did a 5th year) this May, and I guess I'll be moving into my parent's basement. I feel I've watched every movie that exists...not sure what to do with myself.
It's interesting to talk to someone else around my age with CFS. I've never met anyone else my age with the illness. We probably do differ in our symptoms etc, but I'm sure we've been through a lot of the same hell. But hopefully we'll both get better!?
Keep in touch,
Amy
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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KFaucher
Member in Phase 3
| Joined: | Sun Aug 1st, 2004 |
| Location: | USA |
| Posts: | 217 |
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Posted: Wed Mar 16th, 2005 23:25 |
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Paul,
Thanks for going public with this. You seem to be one of the earliest PWC’s on the MP and many of us are curious as to how you (and any others out there) are doing. Please let us know how the "vacation" goes. Also, how is your light sensitivity??? It seems that you should be getting real close to losing it. Ahhh, won’t that be nice?!
Amy,
The funny thing is that, like Paul, I too have been looking at my gains and losses since beginning the MP. My situation is very different from you and Paul. My first recognizable symptoms were when I was 24, I am now 45. I have spent weeks in bed, a couple years in nearly full remission, and everything in between. I have been on the MP for 3 months.
The biggest change is the Brain Fog. It is very minimal now, only becoming noticeable with strong herx or over exertion. It is a huge difference!!
I now have less pain and stiffness. Over the last 2 years I have had increased joint pain and muscle pain and stiffness. Last summer I was starting to consider carrying a cane. Lower back pain was getting worse. I felt about 100 years old. All that pretty much disappeared within 3 days of starting Benicar! Unbelievable!
In general, I feel much better now than I did pre-MP. Some of the herxes can be rough. Some pain has been intense, though transitory. My light sensitivity is very strong. Worse than I was capable of imagining. I was warned, but I could not really believe it. There is also a general weakness, although that isn’t quite accurate. I have more strength than I did last year, but I have no endurance. And by that I mean that my endurance could be measured in seconds! I am still maintaining my office work on the computer, but I recently had to admit that I will be unavailable for fieldwork (survey work) until further notice. I had thought the problem would be light, but I just can not physically handle it.
I am now on 100mg mino, and will likely move to phase 2 in a few weeks. A lot of people want to quantify our experiences, "are you 50%? 70%?", "do you feel better or worse than before?". Well, it’s more complex than that. The best I can say is that I have been responding very much like the earlier sarcs, and just like Trevor predicted. Based on that I believe that my light sensitivity will go away, my strength will return, and I will get my life back. So will you. It is nice that you can do this while you are young. I know sick people don’t hear this often, but I envy you. Live a long healthy life, kid.
Ken
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