When last I blogged, I was starting Azithromycin I had already started NACi, 1000mg/day months before. Then, Doxycyclinei 200mg/day for two months. I was tolerating both, quite well. When I started the Doxy, I immediately no longer needed my cane with which to walk! But, then came the Azith.
I started off with the full Wheldon regime dose of 250mg 3X/week. But, I gradually started to experience some very strange symptoms. Whenever I’d take a step, I felt as if I was placing my foot in ice. My whole body and nervous system responded accordingly with immediately wanting to withdraw that foot. And, with pain, as if I hadn’t. That’s what it felt like while walking. Dealing with such reaction was exhausting. I cut the Azith dose down to half. And, having the recommendation that Roxithromycini might be a gentler alternative, I placed an online order.
Then, alarmingly, the pores and lymph nodes on my neck and head began weeping. I called my prescribing GP to take a look, hoping he could culture the exudate. Neither he nor his PA had ever seen anything like it. He told me he believed it to be die-off reaction. But, after his PA nudged him, he said that I should stop the Azith immediately in case this was allergic reaction. Nor did he have the means to have it cultured, but that the Health Dept. did.
Having no other symptoms of allergic reaction, and based on my doctor’s opinion, I decided to continue with taking the half doses of Azith for the remainder of that week. And, I also decided not to go to the Health Dept., afraid of anything that might possibly show up on the culture, that would then mandate their dictation of treatment for.
But the die-off reactions became increasingly unbearable. There were times where while I could sit or recline, I could not raise my body from the waist up, to stand. Therefore I could not walk, even with my cane. So, I stopped the Azith, completely. And, cut my Doxy dose in half, while waiting for the Roxithromycin to arrive. Occasionally, I was successful in relieving the symptoms temporarily with the Samento drops I take (NOTE: these are not part of the Wheldon regime, but are a homeopathic viral treatment. And I do not recommend taking them randomly, and without researching dosages and precautions due to possible severe Herxheimer reaction).
Fortunately, the Roxithromycin finally arrived. That was 3 weeks ago. I started with half doses, having learned how high my CPn load really must be, by my reactions to Azith. After taking that first dose, I immediately could walk again, as I had been able to when starting the Doxy. I have had only two occasions when such symptoms arose again, but they both happened in the evening (I take my Roxi dose an hour before bed) and when I had missed a Samento dose (5 drops, 3X/day, But see my note!). I do think that the low dose of Roxi wears off in the evenings, and I am also exhausted by then, too. And both were relieved, immediately when I took my Samento dose (again, see note!).
While the Roxi is expensive, not available in the States, nor covered by insurance; if I had not obtained it and experienced the results that I am experiencing, I truly do not believe I would still be attempting treatment. And, I am even noticing improvements of MSi symptoms, such as urinary hesitation and retention and better balance. Less ringing and deafness in my ears and improvement of damage caused by Bell’s Palsy to the nerves on one side of my face. Less pain along my spine where I have lesions, too. My pores are still weeping, but not nearly as bad while on Azith.
While I think it is going to be a long time before I will even be able to consider the next steps of the regime (pusles); I will continue to work slowly, in consideration of my diagnosis and obviously high pathogenic load.
--Minai
RRMSi, diagnosed 2/04. Started Wheldon Regime 8/30/06. Doxycyclinei 100 mg/day-working up to 200 mg/day, Roxithromycini 150 mg/day-working up to 300 mg/day. Initially started with Azithromycini, now finding Roxithromycin much more effective and tolerable. USA
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You are a model to us all
You are a model to us all Minai. We should all listen to our bodies like you do, even if we don't have such alarming reactions as leaking pores.
I have noticed an improvement in my skin on my face, the pores seem to be closing down. My skin does not look like orange skin any more, that is good. I do however have an itchy rash with spots that pop up all over my body and go away after a couple of days, so maybe what I have is a less exptreme form of what you experienced on Azi, which is what I take.
Keep it up, we need people like you.
Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAPi 16th March 2006 for RRMSi
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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
Minai, reading the whole
Reading back through your experiences, I now feel that I must have had some lesions in my spine. I have always said I hadn't because I was only ever given an MRI to the head. I presumed that the neuroi thought my spine was clear. I now feel certain that he just wanted to save the NHS money on doing something without need, not because my spine was clear but because I was so far gone there was no point. I will have to do a new blog on this because I don't want to sabotage yours, but I did experience very similar feelings as you in the early days, which is why for a while, I thought I was just getting worse. The good thing from your point of view is that I have always, like you been able to walk, although at one time only just, I managed to find ways around these lesions quite quickly so you should be able to do the same. Just don't attempt to walk without a cane for long distances for a while because if you put too much strain on your body by walking awkwardly, you will make things more difficult.
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Minai,I found my way over
Minai,
I found my way over here to your blog!
I would say 'alarming' is the word for the reaction to those weeping pores. That must have been very frightening.
Thank you for detailing your progress. It made for a most interesting read.
I hope you continue to see big improvements in your condition.
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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.
Thank you, Michele! I
Thank you, Michele!
I certainly value your opinion. I can't even begin to tell you how much reading your posts cheer me. From the encouraging progress that you and your Ella are making, to hearing about your lovely, recent holiday!
Due to a particular religious upbringing, I had to learn how to listen to my body as an adult. As a child, my survival method for pain, illness and problems was just to ignore. While I did develop a very high pain threshold, I still do have to remind myself to listen, at times :-)
How encouraging to hear that your pores are "closing down." Maybe mine will too. This exudate itches, too. And, the skin on my neck below my ears, is actually red from the drainage. I've thought about taking a picture of it, like you have done with your hair growth!
Thanks for all you do to contribute to this forum!
--Minai
RRMSi, diagnosed 2/04. Started Wheldon regime 8/30/06. Doxycyclinei 100 mg/day-working up to 200 mg/day, Roxithromycini 150 mg/day-working up to 300 mg/day. Initially started with Azithromycin, now finding Roxithromycin much more effective and tolerable. USA
Dear Sarah, Yes, I am
Dear Sarah,
Yes, I am certain that me even being able to write a blog update is because of the Roxi! And even in spite of all the other extreme, ongoing issues in my life, that you are aware of, too. :-)
Agreed! That I have even responded to abxi, especially as extremely as I am, is proof that I am infected. No, viruses do not respond to antibiotics. Am so glad I have chosen to start CAPi, since I was all but convinced that just taking the Samento for chronic henchman viruses would be my MSi "cure." Now, no way!
The last MRI that I had, nearly a year ago, was of only my cervical spine. I wanted more, further down. As I obviously have symptoms related to that region, too. And, because of it, my neurologist refused, saying he didn't need it to know that it was there, as well. So, I certainly think that your guess is right about your Neuroi "giving up."
Your worries about sabatoging this blog...blog all you want about it. I am still so very fascinated by your Neuro experiences, and others, reading here may be, too. Blog specific, or not!
Also, this was when I tried to pin this Neuro down on my diagnosis. I asked him, "are you telling me I have progressive MS?" He didn't answer, which was easy since while he has practiced in this country for nearly 30 years, he still speaks primarily in his mother tongue which is Polish.
He is the 4th Neuro I've seen since the initial diagnosis of RRMSi. And, I now am not convinced that it is an accurate diagnosis. But, I suppose that it is the only one that I can officially keep in my signature.
Thanks, so much, for the encouragement about the spinal lesions. My cane remains in my car, just in case :-)
--Minai
RRMS, diagnosed 2/04. Started Wheldon regime 8/30/06. Doxycyclinei 100 mg/day-working up to 200 mg/day, Roxithromycini 150 mg/day-working up to 300 mg/day. Initially started with Azithromycin, now finding Roxithromycin much more effective and tolerable. USA
Hi Annette, Thanks for
Hi Annette,
Thanks for reading!
Yes, I am still a bit frightened by the weeping pores. I want to know what's in the exudate, in case it may be contagious, or something.
Best wishes for all you are facing, too. I will continue to read your updates, finding so much encourgement by the spirited example of finding your right answers!
I would love to find an excuse to travel to Greece. My mother's stepfather was from Greece, and growing up I learned a bit of the language and many stories :-)
Thanks, again!
--Minai
RRMSi, diagnosed 2/04. Started Wheldon regime 8/30/06. Doxycyclinei 100 mg/day-working up to 200 mg/day, Roxithromycini 150 mg/day-working up to 300 mg/day. Initially started with Azithromycin, now finding Roxithromycin much more effective and tolerable. USA
 Minai please be careful
Minai please be careful with Samento, it is NOT a homeopathic medicine but a herbal preparation made from cat's claw , it's being used by many people with lyme because it kills off borrelia. Herbal medicines may be natural but that doesn't mean they are harmless. If you take this you could be causing die-off from other bacteria that you are not aware of carrying and that will be making you feel far more ill than you should be.
Please talk about this with your doctor as combining Samento with antibioticsi might cause problems and slow down your progress. The main problem with Samento is that there have not been any independent studies or trials, all the info available comes from the company that makes it or the ones that sell it.
Having said that - there are many people taking samento and finding it very helpful but if you want to take it along with the CAPi be aware that you could be dealing with unnecessarily large amounts of die-off.
Elinor ..... from England UK, on Wheldon protocol for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug 05, 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.
Yes, thanks Elinor. That's
Yes, thanks Elinor. That's why I included warning notes everytime I mentioned Samento in my blog. I referred to it as "homeopathic," as it is classified as a drug in the country where it is grown (Peru). And, is an herb that has been modified, too.
It is my doctor who "prescribed" it. Not specifically for Lyme, but as a general anti-viral treatment. I had already been taking it 3 months before starting CAPi. And, it is also he, who is prescribing the ABX, as well. So, not to worry. :-)
CPn viral henchmen be gone!
Will add this additional note requesting that anyone else interested in further info or discussion about Samento, please just PM, instead. Thanks! :-)
Now, back to studying for Finals.
--Minai
RRMSi, diagnosed 2/04. Started Wheldon regime 8/30/06. Doxycyclinei 100 mg/day-working up to 200 mg/day, Roxithromycini 150 mg/day-working up to 300 mg/day. Initially started with Azithromycin, now finding Roxithromycin much more effective and tolerable. USA
Minai!I made it back to
Minai!
I made it back to your blog. I admit I'm having great difficulty negociating this site. I have only ever been used to basic MSi forums before and this style is completely new to me. I guess my cognitive difficulties don't help much either but as I always sing...."I can see clearly now my brain has gone..."
Anyway, I would love to see you over here. Yes, Greece is one of the most interesting countries I have ever visited. It is bursting with culture and traditions..... and craziness.
We could trawl our way round the local pharmacies stocking you up on a case of Roxyi for your return in between taking in all the amazing sights and smashing plates by night!
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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.