you could add achey, tired ones too.
I have been doing CAPi (Wheldon Protocol) now for well over 6 months. I have found the whole CPNorg website immensely illuminating on so many subjects, but it is inevitable around this point that I question how I am progressing, especially in light of some continued difficulties.
May was a very tough month for me. I seemed to get one of my many infectionsi (HHV6/Epstine Barr flare ups?) that just took me down a further notch. Weirdly, I even got spots on my face, something I never, ever, get. Plus large coldsores round my mouth.
Now all this has died down as we move into mid-June. My skin has returned to normal. Though my hair still falls out; if I just pull a strand it just pulls out so easily, and it is greasy nearly all the time. But worst of course, I am still just tired, exhausted, and ATM can’t walk hardly without feeling the worst after-affects in terms of pain. I haven’t been able to make any social arrangements for weeks now, though I am desperate to take me and my son out at the weekend. Even going to the local shops or cooking a very basic meal is exhausting. My legs are killing me for no particular reason - I don’t think I have been that active this last week, and the last few days hardly at all.
So, I have quite a pertinent question. It is my understanding that it is pretty normal to feel worse when beginning CAP. But how about 6-8 months down the line? I still feel worse than before I began, and after 6 months this is beginning to concern me.
I remember managing going to the seaside in early June in 2007, before I started CAP. Whereas this May I had to cancel a holiday as I felt so rough. But perhaps the problem is that ME, like CAP, is patchy.
Where I am in my protocol is now is that :
1. I have added calcium pyvurate (did that make me feel better first, then worse, or did I imagine that?)
2. have just started L-Lysine to see if that helps.
3. I am now taking my activated charcoal twice a day. It seems to help with the general ‘feeling ill’ part, but not fatigue or pain.
I did hesitate about posting this. I felt it was negative, and I wanted to hold out another month to see if things improved as I hoped. I will do another post mid-July to compare.___________________________________________________________
M.E./CFSii 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsii Sept 2007. Doxyii and Roxy full dose by Dec '07. First Flagylii pulse January 2008.
Just an addition: My
Just an addition: My illness history is that I had ME/CFSi in my mid-20s, following glandular fever, but was functioning reasonably well in my 30s (I worked, had a social life, etc, but prone to lots of minor illnesses). When I was 44 (and my son was just turning his 4th birthday) I had this clear ‘relapse’ that went on for a year before I found CPNhelp and started CAPi.
M.E./CFS 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
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M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
Blackfoot, As we are
Blackfoot, As we are going through this process it seems like FOREVER.....Patience is something this teaches you.
I thought I'd start feeling better by 6 months. Actually by that time I was feeling the worst! My body kept telling me I was still sick. I also have EBVi and HHV-6.
I completely shutdown with severe bronchitus/pneumonia in March of 2007 I had a "life" (working, able to do things physically and socially) was able to drive. Ahh, then the diagnosis of CPNi and the beginning of treatment.
Just working up to the full dose of doxyi took a few months. I became very very ill... and bedridden. When I added the azith a few months later -- I had to work up to the full dose on that over a period of a few months. I got all sorts of "fun" surprises! (I developed reactive arthritis and joint pain, started using a transport chair. Another biggie was orthostatic hypotension which created a situation where I could no longer drive).
These reactions are getting better it's just taking me longer. Each person is different! I am just now (1 year and a few months later) starting to be somewhat functional -- (still not able to work, drive, shop, or keep up my home). I just finished my second pulse......
I understand your concern re not feeling better after 6 months -- it may be you have a high load of CPN. Your body is obviously working hard at fighting this bacteria and it could take you longer to start feeling better. Just hang in there -- it will get better as the abxi clears the bacteria from your body.
Blessings, Jeanneroz
Jeanneroz ~CPN diagnosed & started protocol 4/2007, also HV6, EBV. CFIDSi/FM diagnosed: 6/07; 200 mg/doxy/day~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.2nd Tini pulse 5/24/08: 1-250 mg 4 days,supplmnts___________________________________________________________
JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupBlackfoot I know how you
Blackfoot I know how you feel because approaching my one year anniversary of starting this protocol I too begin to wonder when the light will shine. I seem to recall someone saying that the first year is the worst, then improvements begin to show...come on then, show yourselves...I am still waiting!
When I was building up the pulse lengths and metroi quantities I felt that I was improving steadily, but with the full strength/length pulses I seem to have taken the proverbial two steps back. So it's a bummer now, but I have to keep on remembering Rica's story and as Jeanneroz says be patient. It took me a long time to get ill, so I am not going to get well in a few months am I?
But iI agree it is so frustrating when you look back at what you think you may have lost isn't it?
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 #17...I can because I think I can.
Blackfoot - Sorry to hear
Blackfoot - Sorry to hear you are down.
Re the viral exacerbations - that seems to be pretty common for a number of posters here - both MS and ME/CFSi. Your immunei system is busy dealing with the bacteria and bacterial die off and it is so over taxed it likely lets previously marginally controlled viruses break back through.
Just my opinion but this seems to happen to many here between 4 to 9 months of treatment. Some here try Valtrex with positive results to beat the viruses down while they treat the bacteria. Just a thought...
You might try increasing your anti-porphyriai measures and endotoxini measures. Both can make for sleepy, tired and achy bunnies...
Re your progress or lack there of - For my husband, he went steadily and rapidly down hill for six month before (knock wood) he hit rock bottom. Then he began to show glimmers and whispers which gradually developed into clear improvement.
If you were a MS'er at 12 months and hadn't reached at least a halting of disease progression and begun to experience some good days I would suggest you consider adjusting your antibiotic combo but as you have ME/CFS which is truly a different disease hopefully others with ME/CFS can comment on realistic expectations.
Daisy - Husband on CAPi 5/07. Roxithromycin, Minocycline, Rifampin, Bactrim DS,
Mepron, Prednisone,Novantrone, Doxyi, Azithromycin, Flagyli,Diflucan___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Thanks for all your comments
Thanks for all your comments and concerns. I think, in a way, if i was by myself it wouldn't concern me quite so much; at my age i can wait another year. But, for me being stuck in this place is very difficult having a 5 year old boy that I am solely responsible for. In a sense I see him suffer in a way too because of all the constant restrictions on activities, his educational choices, general plans and socialising. In a way I feel that an important joyful part of his childhood is passing us (both) by. Anyway thats a strong emotional component of the frustration for me.
M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
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M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
Hi Blackfoot, I really
Hi Blackfoot,
I really empathize with your situation with your son. I know you must feel this is causing him to miss out on parts of his life as well, but if this does prove to improve your health in the long run, all this will be long forgotten, and your son will be so much the better for it, as will you. In addition, your son may grow to be a man who can better understand and empathize with those who have chronic health problems. You're doing the best you can for him, and children are resilient, so don't despair! He's still very young, and you have many better years to come.
I've been at this for about 9 months now, and I'm definitely at a very difficult stage. The winter was really tough, and I haven't bounced back from that yet. In fact, there seems to be no bounce at all really. I try and try to pull some energy out of this body, but it's nowhere to be found. I've been worried myself lately. I increased the moppers the past few days, and I've also added the Simplified Methylation Protocol developed by Rich Van Konynenberg, and I actually had a couple of good days the past two. Of course, there's no way to tell whether this will last or what exactly allowed it to happen, but it's a glimmer of what may come if I can just get through this somehow. Since the only options are to keep trying or to give in to the illness, I guess trying is the best option to choose here.
I hope those bunnies feel like hopping a little bit before too long!
Finch - Western PA USA
ME/CFSi since 1991 - CPni dx 6/07 - began Cipro 1500mg per day - added NACi 7/07 - switched to Doxyi 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc
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Finch - Western PA USA
ME/CFSi since 1991 - CPni dx 6/07 - began Cipro 1500mg per day - added NACi 7/07 - switched to Doxyi 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc
Susan- this getting stuck
Susan- this getting stuck is very familiar to me. I seemed to go in stages of improvements and then plateau, from different things as it turns out. The sneaky build up of porphyrins was something I totally underestimated for the first two years. Did a period of Valtrex and I think it helped. Dr. Powell added in INHi at 150mg when I first started with him and this also helped after an initial adjustment period. You'll sort it out, but I'd start with amping up the porphyriai/endotoxini measures and then go from there.
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
I've been on the protocol
I've been on the protocol for over two years and although my hair is much better the alopeciai is not cured, my hair still falls out in patches, but the patches are getting smaller and smaller. My joint pain is improving, my skin does not flare up like it used to but I still get spots and itches at times. Since starting the protocol, my age has caught up with me and the skin of my arms has become very wrinkled. I can't complain I'm in my sixties, but it has been quite dramatic and shocking at time to look down on the arms of an old woman. Whether in time it will improve remains to be seen, I hope so.
There are days now when the pain in my gut is so much better than in the past three years, but there are still many days when it is quite sore.
All these tales of woe are just to demonstrate that the treatment takes a long time, the length of time may be relative to the length of time a person has been infected and the load of Cpni they carry. But since the start of treatment there have been some positive changes especially in relation to my sinusitis, asthmai, and lower back pain, but these improvements did not come overnight. And there were times in the first year when I felt a lot worse than before I started, especially in my joints and gut.
I hope things improve for you in the next few months, don't loose heart, your son would not swap you for any other mother.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
hey Susan, hope you start
hey Susan,
hope you start feeling some improvements soon. You seem to be pretty alert in your writing, has there been improvement in the "fog"
I 2nd what Finch said about your boy, he is going to be a very good husband having gone through this. If he has some play mates to see, perhaps the parents could help out. I know it is hard for me to reach out for help so it isn't easy, but we do what we have to.
I have been treating for 1 year now & just finished pulse #11 yesterday 1gm total flagyli X 5 d. Since coming back from 3 months in AZ I have really been struggling with energy probably because of my sleep issue, that being the lack of it. I recall in my 20's having had mono; people told me that you sleep alot. I did not, I was completely exhausted, sooo tired, yet, all I could muster was a few hours at a time.
Perhaps this worsened insomnia is my revisit to that time. No REM sleep makes for a crabby, hurtin unit. I am vigilant with the moppers in whatever quantity it takes as the Troll Queen added to crabby hurtin unit could be a bad combination for anyone around me! Good thing husband is in San Diego working until Thursday!
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#10 1000 mg 3 days & 750mg 2 days, 5-17-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days