This Is MS Multiple Sclerosis Knowledge & Support Community

Hello

I'm going to see Dr Wheldon this week with a view to starting the combined antibiotic treatment for RRMS. Like others on this forum I'm going to chronicle my treatment journey - partly to keep track of how things go for myself and partly for the benefit of those who come after - I've found other people's treatment logs have helped me a great deal in understanding the treatment and in making the decision to go ahead - so I hope this will help someone else.

So, to summarise where I am now in July 2009:
I have RRMS - diagnosed in 2008 but have had symptoms for about 20 years. My physical disability is relatively mild - arms and legs a bit numb and tingly, sometimes a bit wobbly, a bit clumsy. For me the brain fog and mental fatigue are more severe. My memory is dodgy and I am starting to have problems with word-finding, my thinking is rather slow. I find talking is especially tiring and this is severely limiting my ability to work and also to have any kind of social life. I also have patches of depression particularly in the winter which feel entirely physiological rather than psychological in origin. My illness has become more agressive in the last 4 years since I had a mysterious and very painful chest infection.

I also suffer from chronic sinusitis, recurrent urinary tract infections and intestinal cramping and diarrhoea.

I started taking NAC two weeks ago and this has created quite a reaction (fevers, sweats, shivering, nausea, chesty, headaches, sinus pain, palpitations, temporary recurrence of old MS symptoms) - so according to the theory it looks as if CPn is an issue for me. I'm glad I started NAC at the lowest dose (600mg) as I think the reaction would have been really very unpleasant if I'd started higher than this - tho' I've now worked up to 2400mg.

I hope to start the abx next week if Dr Wheldon is in agreement and I will post again when I get started.
bw
Agatha

Hi Agatha!
Looking forward to seeing your treatment log. I have found it to be very helpful to keep mine as I refer back to it often. And you are right, it also may help others considering this treatment. Best of luck with your upcoming appointment with Dr. Wheldon!
Lori

Welcome onboard Agatha! You have reminded me to update my thread here. I'm excited and looking forward to hearing about your journey. Thank you for deciding to post and share your experience with us a t TIMS. Ken

Following a very helpful consultation with Dr Wheldon I have started my doxycycline today (hooray!)

A few little questions:
Can I take all the doxycycline in one dose (rather than twice a day)
Is it accurate that I shouldn't take the doxy with dairy products or other calcium supplements
Does it matter whether I take it with food?
How long before any Herxheimer reaction kicks in usually?
Thanks
Agatha

Hello Agatha,

Can I take all the doxycycline in one dose (rather than twice a day)
Is it accurate that I shouldn't take the doxy with dairy products or other calcium supplements
Does it matter whether I take it with food?
How long before any Herxheimer reaction kicks in usually?

After about a month I took both doses of doxycycline together because it saves remembering to take the second lot.

You can take doxycycline with a glass of milk or with cereals and milk, but not with calcium supplements. Its all to do with how much calcium there is in a glass of milk. With the old tetracyclines, any calcium was a no-no, but times have changed.

I couldn't take the stuff on an empty stomach though some do. I would sick it up.

When I first started abx the reaction kicked in within hours, just the once, but some people find it takes ages.


Sarah

Thanks for this info Sarah. The herx has now arrived...
Agatha

Oh, that didn't take awfully long! Hopefully it won't last too long either.

Sarah

Well, I've got through week one. For the first couple of days I just felt a bit tired and grumpy but by Day 5 after the second dose of azithro I started getting chills and uncontrollable shaking, followed by tingling in all my old sites of MS symptoms. By the next morning I could hardly walk - I'm so glad of the warnings to expect this kind of reaction - even with them I was kind of freaked! But by the end of the day my legs had almost completely recovered and my head felt clearer and my energy better than for ages - I did a full day's work, cooked dinner from scratch and had energy left over - amazing. The fog has descended a bit again today but I feel encouraged that I've made a good start.

I must remember next time I have a big herx to just hold on and stay calm. I completely understand now why Dr Wheldon advises not to jump straight in with the metronidazole. Also, I so admire the courage of those who pioneered the treatment - it must have taken nerves of steel to keep going in the face of hideous symptom flares trusting that these reactions were signs of healing and not harm.

Agatha

I did this treatment a few years ago for Lyme and never started slow. I would have some really bad Herxes. I just started again about a week ago and can't believe the fatigue I have. Good Luck.

Thanks for your good wishes Shaka. Let us know how you get on with things yourself. Why do you have to do the treatment again if you were treated for Lyme - was the treatment incomplete? Hope you have an easier time this time.

Sorry Shaka - I remember now you answered my question in your previous post - my memory aint what it was!
A

Ah, but it will be soon!

Sarah

Yes, I think it will Sarah - my brain already feels a great deal better.

I'm now 3 weeks into the treatment and here is my update:
I have had a weird reaction after every dose of Azithro - chills, aches, lymph pain, brief flares of old MS symptoms, shivering, a feeling of activity in my brain, muscle weakness etc. I also have been feeling very very grumpy (which I am told is porphyria rather than a herxheimer reaction). My reactions seem to have retraced my health history - beginning with the most recent symptoms and working back to symptoms I had 20 years ago.

However, in between these episodes I feel MUCH BETTER!!! My physical and mental energy have substantially increased - I can get through the day without a nap, I have been swimming, cycling and gardening (without feeling ill afterwards) and my brain now has enough energy left at the end of the day for bedtime reading. Just before starting the treatment doing a jigsaw for an hour was sufficiently tiring to bring on new symptoms so this is quite a turnaround. Despite the brief flare ups of old MS symptoms, I have the feeling (do I dare say this) that the heat has gone out of my MS - I no longer have that hideous sense of teetering on the edge of new symptoms every time I get tired. My legs are much less tingly and they no longer get worse after exercise. My brain feels kind of peaceful for the first time in several years. Also my sinusitis is improved (though not yet gone). Clearly things will get more difficult when I start metronidazole but I feel that I have made a very good response to the initial phase of treatment. I hope this will encourage somebody and thanks to all of you who have encouraged me.
love
Agatha

I did my first pulse of metronidazole yesterday (just 1 day to start with). It was an exceedingly strange experience - I could feel the medicine travelling round my body and now my whole body feels like it's fizzing inside - especially in areas where I've had MS symptoms in the past - this I think is a very good thing - something is clearly happening - and I feel very tired like having the flu too.

However, my husband is beginning to feel left out - this evening he claimed that he too was 'herxing' and needed to lie on the sofa, watching football and drinking wine as a curative measure.

Agatha

Agatha, Sometimes I feel so bad for my Husband and all he does. I have been herxing straight this whole month. I haven't noticed any good days. I make it through work barely, get home and lay down.

We have a 1 year old Baby that never stops and I feel so bad my Husband does almost everything around here. He is so great, I couldn't do this with out him.

Take Care,