In the last year or so, my kids have told me that they have felt that my "give a damn" got busted. I guess the country song gave words to what they felt had been happening to me. Yesterday, my youngest told me that she feels that I might be getting my "give a damn" back. We were planning supper at the time and she said that I never used to think that far ahead before I started to take the treatment. Sounds subtle, I know, but she has a point. I have found my frustration level has gone through the roof these last few days. I attribute that to the possiblity that as my mind become sharper, so does my tongue. LOL. Actually, it's more like I feel the full brunt of my disablity now that things seem more real. I have worked in the yard with my oldest daughter the last few days and I have been horrified at the reality of how much my disability has progressed from last spring. I was able to do much more last year at this time and am completely unable to do some of these same tasks this season. It has caused me such a sadness that I have been in tears. I HATE HATE HATE when I can't do things for myself and refuse to ask for help sometimes and it gets me in to trouble with my family often. I get mad when no one else does the things that I can't do but I don't ask anyone to do them so how would they know. In the last month I have had some symptoms dissappear, like the bladder and bowel issues that I had been dealing with for a couple years, the swelling my feet and ankles, the burning pain in my feet, the vision inconsistancy, so it has not been without very instant encouragement. But I am still more discouraged then I have ever been before and I am starting to believe that it might be a good thing. My husband pointed out yesterday that maybe it is what happened to me when my mental fog lifted. The brutality of the realilty sent me into a tailspin. I guess that is what they mean by truth hurts. So I will keep on keeping on. I can honestly say that if this is as good as it gets as in if I don't get any improvement in my legs, this is the last year for a big garden and high maintenance yard. My oldest is living across the street with her new baby and so is willing to do all the leg work but that won't continue indefinately. She has physically picked me up out of the dirt and sat me on the grass and told me to let her do it several times and that really bites. So maybe when you clear your brain fog you have some real issues to deal with. Not what I expected to feel. But like someone said to me on here, expect the unexpected.
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SPMSii< Supplementsii & NACi, Doxyii 200 mg, Azith 250 mg 3X/wk, starting flagylii slowly
Todybear, I just know that
Todybear, I just know that there will be a good number of MSers from the other side of the pond here in the morning to give you good feedback. Cognitive improvement of many types seems to return first. It was for me. When you are numb your are just that. A bit like sleeping on your arm as a child and waking with the pain as it returns to full function. I see for myself that happened in the emotional rhelm first as well long before my overwhelming fatigue and lack of ability to be more active returned.
Mostly I let the MSers tell it like it was for them, because I feel that how could I say anything that would be helpful to someone who's dx I seemingly do not have. Imobility and dysfunction comes in many shapes and colors, not are easy and all take from the quality of life.
What I found from the information and support from this site and the participants is hope and a can do attitude. I attempt to focus on what is better even those small seemingly insignificant things to a fully functioning self. There may be a needed brief time of grieving to go through then fix your eye on the prize, read the stories again, celebrate with everyone their statements of triumph and adaptation.
Your family sounds beautiful, a real blessing in this world. And helpful too. I know the frustration of not asking for help and getting irritated that no one sees that I need it. We don't want to need it who would?
This is not an easy treatment, there are no easy treatments and we know it. You sound like a can do person strong willed person from the account of your day and those are the folks that stick with this approach and often reap the rewards.
Blessings and sleep well, you have earned it.
Louise
Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi.
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Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3TID[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}
Frustration? Tell me about
Frustration? Tell me about it Todybear; I truly think that the returning clarity of mind also brings a proper awareness of our lack of physical strength and dexterity, something that before had been only seen through a softening mist. Now I have to think is this the flagellation effect, or am I really frustrated with myself? Is this a lack of progress, or is the CAPi not working for me...but I hear Rica's description of her journey and know that it is too soon to think like that. My husband reminded me today of how good I was after the small first pulses - by that he means that my walking was very much better, more fluid, with good balance and lots of energy. These were the "whispers" that Rica talked about as being indicators of future progress.
So as I have not yet completed a year of treatment and Stratton estimates that the length of treatment can be 3-5 years then this has to be only impatience on my part. Who knows how long this infection has beeen brewing in my body, I don't and can only believe that I am experiencing Rica's uneven ride as well (although not with such devastating effects).
I have to confess that with the forward thinking returning I do plan jobs that I can't do alone and ask my husband to help. He forgets about it and tries to tell me that I didn't ask him - that won't wash any more pal, my memory is better too.
New Forest, UK. Progressive MSi dx 12/06 LDNi 3/07 CAP 6/07: Wheldon version. Pulses so far #10
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #12...I can because I think I can.
I too continue to struggle
I too continue to struggle along with the protocol. I should be starting my 5th pulse of tinidazole on Monday. I am in more pain than usual and often have feelings of just quittin. Yet, I go on always hoping and hoping and hoping.
Next month is neurologist appt. where, he, no doubt will no nothing nor even want to about what I'm doing. This very attitude and that of so many others just sets me back even more so. Mind-body is vitally important.I am convinced.My emotional state has to change but it remains ever so difficult especially when there doesn't seem to be an iota of improvement.The folks who post are so helpful. I hope to hear from someone.
Loulou
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diagnosed MSi Jan.2000 , diagnosed chronic neurological lyme disease Nov.2002.
Loulou you sound
Loulou you sound discouraged. I am sorry that you are feeling low. It's not fun being sick and tired and those around us don't know how we feel and sometimes appear like they don't even care. Dr's don't understand either and they are the ones that you hope will be there for you and support your recovery. We all have to support one another even if we have to sit on our computers to do it. Blessings to you.
SPMSi< Supplementsi & NACi, Doxyi 100 mg, Azith 250 mg 3X/wk
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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, starting flagyli slowly
Hi loulou You sound very
Hi loulou
You sound very down & this can be a sign of the toxins running a muck in your body. I too get down, these toxins & porphyriai can make life like someone who is manic depressive!
Please increase your moppers to help you with this. It takes time to clear the CPni out of our brains. Please keep at it & check in with us often. You can PM me if you like.
Please search for the positives, I pray you will see & feel sunshine soon.
CFIDSi/ME 26yrs, FMSi,
IBSi, EBVi, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08Loulou, since I am on the
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 51 pulses NC USA
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 52 pulses LDNi Rifampin 8/08 again NC USA
Hi TB, you are starting
Hi TB, you are starting the long path of getting better and you have reached the first rest stage. Some people actually give up at this point because they don't like the realisation of how bad they are. They prefer just to sink back into the slough of somewhat euphoric despond. I became very down when I realised how bad I really was, whereas before I started on doxycycline, I thought that the paralysis of my right hand was just a passing thing and would soon be better, even after six months. I told David blithely that I didn't need an MRI, even whilst stumbling along the corridor to the MRI suite, clinging onto the wall.
It does pass in time, though.The toxicity which makes you like this is usually the first thing to leave and you are not alone in feeling the way you do at the moment. Try t think of this when you feel really down. It was the very first thing to happen in my case, followed by losing my slightly slurred speech. A month or so later I remember putting my feet onto the polished wooden floor in our bedroom, first thing in the morning. For the first time in years I was aware of the cold beneath my feet and it felt SO good. I knew I was on the way..........Sarah
An Itinerary in Light and Shadow...........Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Tody and lou lou, I too
Tody and lou lou, I too feel extremelely discouraged and the mere reality of just how sick I was prior to the abxi and where I was potentially headed had I had not started CAPi...it is just so horrifically traumatic to me when i think about it.
However, based on what Ive been through so far... I agree with what ruth said about toxins. They seem to somehow contribute to ones ability to deal with this horrid reality. That is why its important to get rid of them whenever we can. A simple dose of charcol can increase ones tolerance level to this stressful reality by simply getting rid of those accumulated toxins.
Regardless of ones motivation for the fight, we dont have the option to give up because the one thing that Cap absolutly does seem to bring (as mentioned) is improved cognitive function and that, even if its the only thing that ever improved ... would make this worth it.
Dont ever give up, just push on.. like a robot, just keep doing. We only have this one life as "us" so why not try to get better for the mere hope that maybe we will and we can then know what " living" is supposed to be like.
CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBS neutropenia, pus found in facial bone, Doxy 100x2, zithro 250x1 alternate days. Metroi pulses each month.
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CPNi pcri and antibody positive , treating MSi,
CFSi, TMJ, trigeminal neuralgia,IBSineutropenia, pus found in facial bone,Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.TD, I understand what you
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Currently on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, back to pulses of flagyli winter '08 all supplementsi. "Color out side the lines
Started Vanderbilt
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It is one of those days! I
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Lori I have been saying that
Lori I have been saying that misery likes company but I would rather say recovery thrives on support. We are a whole bunch of ailing people here and we are free to share our disappointments as well as our small victories. I have had very sharp stomach pains for the last couple days so have started to try the glucose and the charcoal. Nothing has improved yet but I did rock my grandson to sleep this morning and it felt so good. His little warm squirmy body against my sore tummy actually eased the discomfort. So finding the flowers in amongst the weeds is a blessing.
SPMSi< Supplementsi & NACi, Doxyi 100 mg, Azith 250 mg 3X/wk
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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, starting flagyli slowly
Todybear perhaps you can
Todybear perhaps you can replace the little boy's warm body with a hot water bottle (or microwaved heat pad) in future. Much like we were told to do by our mothers at period time - the old ones are often the best remedies!
Now I am off to have a hot/warm shower to try and feel human again...
New Forest, UK. Progressive MSi dx 12/06 LDNi 3/07 CAPi 6/07: Wheldon version. Pulses so far #10
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #12...I can because I think I can.
Ya speedbird, I doubt if my
Ya speedbird, I doubt if my daughter will want to wake her newborn and bring him over to my house at every whim. I will do the heating pad thing instead. I remember the hot water bottle and cramps very well years ago. Oh btw, I don't have to use my shower chair anymore after two months on protocol, one on the abx. So that's a nice change for me.
SPMSi< Supplementsi & NACi, Doxyi 100 mg, Azith 250 mg 3X/wk
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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, starting flagyli slowly
Nice change? I call that
Nice change? I call that bl**dy marvellous! I thought that my tolerating hotter showers and not wall walking in the cubicle was good progress, but not to need a seat anymore beats that.
New Forest, UK. Progressive MSi dx 12/06 LDNi 3/07 CAPi 6/07: Wheldon version. Pulses so far #10
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #12...I can because I think I can.