I have just recently learned the hard way, how correct Sarah and Jim are about this!
Was only taking 100mgs Doxycycline for severals months, following pseudo-relapse. Had been holding off on the 200mgs and re-starting Roxithromycin, until I had adjusted taking LDNi. But, was having trouble doing so.
Nearly three weeks ago, I developed what my husband and I thought must be the only ingrown toenail I had ever had in my entire life. So, I called my prescribing GP who told me to get it taken care of immediately with a Podiatrist. When seen, however, I was told that this was not an ingrown toenail at all. But a mild case of cellulitis! Both he and the GP were astounded, since I was taking the Doxy so it shouldn’t be happening.
I immediately decided to start taking the Roxi, again. Within a day, the cellulitis was gone! Both docs were astounded. While it’s highly likely that the100mgs of Doxy had just not been enough to prevent it; the synergistic effect of adding the Roxi, seems to have been the cure. I now need to ramp up both Doxy and Roxi to full dosage. Am still going about it slow, but it must be done soon, given what I have just learned through this experience that could definitely have gotten, or been, much worse!
Since re-starting the Roxi, I cannot believe how much my overall condition has now improved! I was quite frightened to do so, given what I had experienced as pseudo-relapse. But, I also think adding the LDN is the reason that I can now tolerate it. While ABXi is the cure, LDN sure seems to be helping me with die-off reactions. If not mistaken, I also think that perhaps most who have been more easily able to tolerate Doxy and Azith/Roxi, had already been taking something prior to starting. Whether it was D3, statins, LDN, etc.
For me, LDN has a price of spasticity…but if I don’t take it, I start heading towards experiencing all of the extreme symptoms that led to hospitalization—-pain of many types (the worst being, as if my legs from knees down, encased in ice), vasculitisi-like symptoms, and bi-lateral footdrop. Spasticity or not, I am certainly willing to continue paying this price for CAPi !
This is my first blog in months…that’s how much better I am now doing since adding Roxi back in!
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. USA
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Let's hope you have turned
Let's hope you have turned a corner and are now able to creep towards the full protocol.
Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi 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 5.5 Wheldon CAP 16th March 2006
Wow Minai, what a lot to go
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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
Hi Minai, Glad to hear you
Hi Minai,
Glad to hear you are getting up to speed again. Everyone at their own pace--that's the key.
Lexy
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"Chance favors the prepared mind." --Louis Pasteur
Husband treating MSi with CAPi
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--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi
Minai, I feel like we're
Minai,
I feel like we're going through this together!! I'm still trying to build up to full doses too. But have just started 200mg Doxy and will stick with it. I also realise now that there's no low-dose of Abx as with Naltrexone.
About toes, last year before the CAPi I got such bad fungal infections my nails started falling off. Since the CAP, I've had no recurrent bouts.
I'm sorry about the cellulitis. That sounds wretched.
Good luck with getting up to full dose!! Maybe we need to perform a ritual tribal dance and provide offerings to the gods or something??
Began CAP Oct.06 for SPMSi. Currently on Doxy/Roxy. No pulses as yet.
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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.
Well done Minai, great to
Well done Minai, great to hear you are back on track again ......best wishes to you with dancing and singing all the way! Elinor
Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
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Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
Great News Minai! On
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
A very good news Minai.
A very good news Minai.
I had been on LDNi, NACi and statins long before starting antibiotic therapy. I always assumed that I had very incredibly high bacterial load, however I never had a noticeble Herxeimer reaction except for the first two months. I know that both statins and NAC were antichlamydial, but I always thought that LDN helped me only with tiredness.
One of my patient on the antibiotic protocol since October developed twice nasty bladder infection. She had to take quinolones to get over it. The first infection happenen after the third metronidazolei pulse.
Wish you good luck.
Barbara.
Multiple sclerosis, on Wheldon protocol since February 2004, EDSSi 0 for over 4 years
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Cured of multiple sclerosisi, on the intermittent Wheldon protocol since March 2006, EDSSi 0 for over 4 years.
Thank you, All!!!
Thank you, All!!!
Michele: I hope so…maybe creeping along hasn’t been the best idea for me. Ella, with your help, has certainly been much braver about it, than I.
Marie: Coming from you, this means so much! Thank you for all that you provide us with, here. And, in the context in which you are providing it, being well on your own road to recovery. I find this amazing!
Lexy: Yes, slow going, but can’t give up…it’s my best and only hope. Hope that Jim is making good progress, too!
Annette: I feel the same! Was trying to just ramp the Doxyi back up, too. But, when I got cellulitis, while on it; added the Roxi hoping for the synergistic effect. And, also afraid I had developed resistance to the Doxy. Am just glad that for whatever reason it was, that it worked. Were you on probiotics when you developed those fungal infectionsi? I think that the only reason that I haven’t is because I have been taking them for years, now. Offerings? My cats are running to hide
Elinor: Much appreciated…thanks for all that you are doing here, and with such great success! Yes, much singing and dancing (nevermind gimpy feet)
Wiggy: Thanks! Hope that you will feel much better soon, too. And, your daughter.
Barbara: Oh, yes…if it were not for reading your patient story and postings about LDNi, I would never have tried it! And, I find your experience with statins and the MRI results and EDSSi scores, following, remarkable! But, having seen so many doctors in the past, who warn against using statins, I had never considered trying them. I have no idea whether or not it is the LDN that is promoting my sudden tolerance for Roxi; just that die-off symptoms return, if I don’t take it, or decrease the dosage. I think I read that Marie was also taking LDN, too, before starting the CAPi. And also that she did not react much to the Doxy or Azith. Just to the Metroi. I do find it curious. Am just hoping I continue to experience such effects from LDN in order to continue CAP tolerance. I will certainly keep the quinolones in mind for future Tinii pulses. Was very impressed with Cipro when one of my daughters caught EBVi, was immediately given it, and seemed to recover so quickly. Thank you, so very much!
Well, I did do another dosage increase, this AM. So far, so good. Doxy-->150mgs, Roxi-->225mgs. Am getting closer!!! Maybe I should just go all of the way!
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. USAMinai, I feel tempted to
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Minai, First off. Someone
Minai,
First off. Someone is gonna have to explain how to insert smileys cause I love 'em.
Secondly, to answer your question about fungal infections, yes, I have been on probiotics for a few years now. It all started when I meddled in MSi diets and because I had candida.
But the horrid fungal infection I had last year was probably precipitated by a 3 day dose of IVSM I did. Of course, the steroids didn't have much effect on my MS but the side-effects of the rx itself were nasty. Picture a spider monkey on speed. That was me for a week or so.
Anyhow, I'm back up to 200mg Doxy and feeling like I've been run over. Have constant sharp 'slicing' pains in my neck, and feeling extremely fatigued + worn out, with new outbreaks of cold sores and also my tongue is all fuzzy and my mouth sore. I wonder if that is from the Doxy?
I'm glad the LDNi has made a difference to you and that you are managing to ramp up on the Abx. Great job!
As for animal sacrifces, have no worries-your cats are safe, I have the perfect candidate. My neighbour. He doesn't treat his dog too well. We shall sacrifice him.
Began CAPi Oct.06 for SPMSi. Currently on Doxy/Roxy. No pulses as yet.
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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.
Thanks, Sarah...Am glad
Hi Annette, Yes! You,
Hi Annette,
Yes! You, being whom I nominate as the "Best Humorous Analogist" of the forum, certainly should learn this mode of illustration. I'll try to explain:
1) Enable Rich-Text 2) Click on the place in the e-mail that you want the smiley 3) Click the smiley shown below on the toolbar, to bring up the smiley window 4) Click on the smiley that you want...voila, done! I just wish that there were an animated spider-monkey-on-speed icon included in the selections
Am very surprised that you ended up with the candida while on the probiotics. I never did. Not even on the several rounds of IV 'roids I've had over the past 2 years, either (just stopped the .5mg oral dose I had been taking, too) I know acidophillus alone, doesn't work. But the ones that do work for me contain high amounts of helpful bacteria. And, the one I'm taking now, also contains garlic, making for very pungent nightsweats.
I often feel run over, too. With the labrynitis making me feel as if I'm walking on the side of a wall, or something. None of the horrible pains in the neck as you describe, though. How horrible!
And all this talk on the forum about herpes, cold sores and shingles is certainly providing some good advise for my husband...he has been getting herpes outbreaks since his college days, and has two on the top of his head that just won't go away. We think shingles, sometimes, but this is just unilateral.
Yes, I just hope that the LDNi remains effective enough for me, to survive CAPi. That it's effect do not wear off as they did for you.
Yes, your neighbour, along with my mail carrier. He refuses to get out of his truck to deliver any packages, just placing them on the curb to be stolen or run over
Your analogies top any and all smileys!
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. USARe Smiley faces. Thanks
Re Smiley faces. Thanks Minai for the explanation of where to find a smiley face, however Annette you may not be suffering from brain fog it you can't find it there... It does not appear on mine, so I think that certain browsers may not support that feature.
Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi 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 5.5 Wheldon CAP 16th March 2006
I know, I'll send them to
I know, I'll send them to you by email, then you can cut and paste to your heart's content!
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Minai, D..d..did you say
Minai,
D..d..did you say Enable Rich Text link?? OMG That button equates to Psycho music for me. I can't tell you how many times I've accidentally clicked on it and lost post after post. So, I'll be trying to cadge the smileys off Sarah it seems!!
About the candida thing. I don't think I was clear in my post. I started taking probiotics to prevent and cure candida. I didn't get candida after taking the probiotics. But I did get a massive fungal infection while on the probiotics and after IVSM.
I've been on threelac for a while now but think I'm due for a change. What's the name of the probiotics you take?
I'll take slicing necks pains over your labyrinthitis anyday. Wall-walking like I'm in a storm at sea was one of my most horrid symptoms. I'm sorry you are going through that.
Your hubby needs to see someone about those herpes spots. Does he react well to acyclivir rx?
Wow. That's pretty bad about your mail carrier. Are you sure he doesn't have MSi!!??
Began CAPi Oct.06 for SPMSi. Currently on Doxy/Roxy. No pulses as yet.
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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.
HI all,This reminds me of
HI all,
This reminds me of discussions I have with my parents who keep getting bronchial infectionsi & colds. I tell them, are you taking your Vitamin C, they say yes, I say how much, they reply 500 Mg a day. To this I say, your body is telling you that is not enough because your still getting sick; take more & every 15 minutes. When you get the runs, then that is the time to back off a tad & keep it up!
Is there a problem with taking more Probiotics, acidophyllus?
I have added more as time has been progressing because the abxi is very hard on good flora in the intestines. In addition to that I eat yogurt about 3 times a week. This along with 1.5 gms of L-Lysine is keeping my herpes under check. Just in case, I have Valtrex on hand, but I prefer doing things the natural way whenever I can!
Blessings,
Ruth
CFIDSi/ME, FMSi, IBSi, EBVi, Cpni (375 mg Metroi, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, NAC 1 gm
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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 8-7-08Annette, So
Annette,
So sorry…while you are hearing the Psycho music, I have had the Muppet Theme song, playing repeatedly over in mine, for the 2nd day, now! Re: your blog.
Yes, I used to have trouble with the Rich Text option, too. But, not since the most recent forum site overhaul. (Thanks for the update on this, Michele!).
Am so glad that you were never stricken by candida. But the fungal infection sounds most monstrous! Had no idea that it was a side effect of IVSM, but it certainly does stand to reason. The probiotic I’m currently taking is this one: http://tinyurl.com/29ax5o
Pain over labrynthitis?! No way…am just glad that it isn’t pain as when I went through pseudo-relapse, it was both. It certainly gives me hope, that for you, the labrynthitis went away. While I don’t believe in fate…sometimes, I wonder if I should even say as much
Unfortunately, because my husband is a soldier, the military “owns” his body. Over a year ago, when he developed one of the eruptions on the end of his “bird” finger, he tried to drain it, before seeking help. But, thinking it infected, he reluctantly went to Walter Reed Army Hospital to have it checked. Not one, not two, but FIVE doctors converged upon him with their scalpels (well, yeah, it is a teaching hospital). End result? A deformed middle finger, after a short, low-dose course of ABXi. So, no, we are not brave enough to let them look at what’s there on his scalp. And, I have no idea why he’s never been prescribed something, such as Acyclivir, after the many years that he’s had this problem. It is all in his records, right there, for them to see.
I really need to study up on the L-lysine. Have been giving him Inositol-Choline supplementsi for months, now. And, I think Inositol somehow factors in with L-lysine, but have no idea how. “Must study..must study…must study.”
The mail carrier may now be following a course of redemption, after I filed a complaint, yesterday. Today, he actually drove up my drive and extracted his extremely rotund bottom from his truck to come to my door with the birthday packages that my Mum and daughter had sent for me. I very calmly, pleasantly and politely thanked him for doing so.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. USA
Hi Ruth, You know…I
Hi Ruth,
You know…I have not even been giving my husband the probiotics! I think I will put them in with all of the rest of the supplementsi that I give him (that he already thinks are too many), right now! 1.5 gms of the L-Lysine? Am glad to know all of this and that it is working for you.
Yes, we’ve both been taking 1-2000mg of the Vitamin C for years, now. And, that’s what we have been told about it, too. That it’s only too much when one get the trots
Thanks,
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. USAAnnette- Try enabling Rich
Annette- Try enabling Rich Text in your preferences: my account/edit and scroll down until you see the link "Enable Rich Text"
It should then be already "up" when you go to post or comment so you don't have to switch and lose anything. Of course, test it out...
A few browsers (the older versions of safari, for example) don't support it, but most do. Firefox seems reliable in both Mac and PC versions.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tinii daily (Continuous protocol)
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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
, "Pain over
,
"Pain over labrynthitis?! No way…."
Sounds like you're up for a game of Symtpom Poker Minai! You know, "I'll take your slicing pains + labyrithitis and raise you a gimpy numb leg and throw in a little drooling too!"
Haven't you ever noticed how non-MSers are always doing that if you mention any of your symptoms to them? It's like there is always something worse that they have??
"While I don’t believe in fate…sometimes, I wonder if I should even say as much"
HA HA! That's me too. Wait while I sweep aside the amulets, talismans and voodoo dolls stapled to my screen. There's been many a time when I've said "Wow! I feel so good!" Then wake up in full-relapse mode.
Crikey. That story about your husband is scary. They sliced it off?? You really need to try to L-Lysine. It does work.
I'm so glad your mail carrier has amended his errant ways. He is now off my voodoo list.
Thanks for the info on your probiotic.
Jim,
I tried the procedure you mentioned but just get kicked out of the site completely when I click on that button, even in my account info.
But I'm figuring out more and more each day. I just worked out the edit function and some of the html thingamibobs!
Began CAPi Oct.06 for SPMSi. Currently on Doxy/Roxy. No pulses as yet.
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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.