RFK's ABX Log

A forum for the discussion of antibiotics as a potential therapy for MS

RFK's ABX Log

Postby RFK » Thu Sep 13, 2007 10:42 pm

I just started the Wheldon protocol on September 2nd. I started with 2X100mg of doxy for one week (morning and evening) and did not have major reactions for the first five days. At the end of the frist week, I noticed increased brain fog and difficulty forming thoughts. On the 7th day, I took the first dose of azithro, at which point I had a worsening in many of my pre-existing symptoms, mainly, in my ability to walk. Before I started, my EDSS was at 6.5; by now it could be at 7.0. Some of my most prevalent symptoms are: fatigue, sleepiness, loss of balance, vertigo, itchiness, redness around my fingers and toes, and a lot of numbness and heaviness in my limbs. I have even noticed that my hair is falling when I shower. My energy level is low and has not gone up since I started.

One week after the beginning of the treatment, I started taking the antibiotics before going to bed, in an effort to avoid the drousiness and the sleepiness during the day. This has worked to some extent.

Does anyone see any problem with taking both doxy doses and the azithro at the same time in the evening?

Had I not started the protocol, I would consider these symptoms to be an exacerbation. At this point I assume that I am going through a Herx reaction. It is quite unsettling, though, and I can only hope that it is the treatment working. It feels like I am miles away from home.

Any feedback would be greatly appreciated.

Thanks, Bobby.
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Postby wiggy » Fri Sep 14, 2007 12:07 am

Hi Bobby,
Yes, everything you discuss is perfectly normal. I take my doxy and azi together but I did space them 2 hours apart when I first started antibiotics. Are you taking the supplements? The supplements help counter some of reactions from medications. You may want to visit http://www.davidwheldon.co.uk/ms-treatment.html for more information.
also, in the regime section here there are a lot of patient stories. I am also edss 6.5 and I did get worse before I got better. You will notice small improvements along the way and the first thing I noticed was increased energy but it took at least 6 months for me which seems like a long time but if you are like me - I never in the past had improvements over the 10 years I had this disease and now 1 year into it antibiotics I am getting a reversal of some symptoms and most important I am STABLE and not getting worse.

So try to hang in there and remember it doesn't improve for most overnight.
I just got my haircut yesterday and told my hairdresser my hair is falling out and she said she noticed. This is also a common complaint and at times it will grow like crazy and a few months later it could be falling out. It will stop one day. When I feel bad , I find reading other peoples stories very helpful. A few months into antibiotics I too had a bad Herx, thought I was relapsing and it took 2-3 weeks to recover and was very scary.
Take Care
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Postby Dovechick » Fri Sep 14, 2007 12:55 am

Hi Bobby,
All your symptoms are what we expect when starting on this protocol, it is unsettling especially if you have RRMS, because your first thought is: am I having a relapse. It takes time for this reaction to die down. My daughter (in similar circumstances to you) had quite frightening reactions for about six months on just doxy and azi/roxy.
When things quietened down a little we added the flagyl, and once again she had some more pseudo relapses. Now eighteen months into the treatment she is much more stable and feels well enough to jump out of a plane for charity (tomorrow). Her eyes and upper body strength are much improved, her brain is sharp and she is putting on weight. There are days when her gait is better, but that tends to come and go at the moment.
I found it made no difference to when or how I took the doxy and Azi, (I tried all kinds of permutations) however when I started the flagyl I could not take the Azi at night as I would wake up in the middle of the night with bile in my mouth.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Dovechick » Fri Sep 14, 2007 1:07 am

Bobby, forgot to say in my previous post, that I have alopecia areata a relapsing remitting baldness, which made a marked recovery after first starting the CAP. (see patients stories at www.CPn Help.org ) Just over a year after recovering a nearly full head of hair, my hair is falling out again, in small patches after an attempt at extending my flagyl days from five to seven days, with a 7 day recovery period.
I've had to go back to the normal protocol, not so much because of the hair loss which takes up to four weeks to manifest itself, but because of my gastro problems.
But I'll keep trying
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby SarahLonglands » Fri Sep 14, 2007 2:53 am

Hi Bobbie, there is no problem about taking both abx in the evening as long as you don't lie down for about thirty minutes after taking doxycycline.

I have difficulty remembering exactly how I was when I first started treatment but I have been assured that there was a worsening of symptoms for a week or so. I slept most of the time, which was unusual for me and when I eventually woke up I was much brighter!

I had nearly completely numb and heavy legs anyway, but balance worsened and I got bouts of extreme itchiness, more than redness around the fingers and toes, it extended right up my bad right arm and stayed for quite a while. Also I had very short hair at the time, but David was having to clean it out of the u-bend in the shower every coulee of weeks. Now it is very long, but he only cleans out the u-bend about once every six months.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby MacKintosh » Fri Sep 14, 2007 10:51 pm

Wow! Did you ever start FAST. Maybe, if the side effects are too much, you should think about backing off the azith. Very few people start doxy and azith in one week (I know, I know; I was one of the few who did).

The directions for the Wheldon protocol say to start one only after the other is well tolerated and it's hard to tell after only one week what is tolerated and what is just waiting to become a delayed reaction, after peak blood levels are reached and maintained.

All that being said, if you can handle these reactions, which are normal for abx treatment, then great. It sounds like you're doing everything right so far. And the hair grows back, maybe better than before. Been there, lived through that... :wink:
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby tory2457 » Sat Sep 15, 2007 5:47 am

I agree with everyone else along with my own experience(s).

Feeling like I was getting a relapse is a rather normal process. It's actually a good sign; bugs are dying off. This isn't an easy thing because feeling worse before feeling better just isn't what we're used to "feeling".

Most meds are supposed to make us better....abx does the opposite. Worse, than better. :D

Are you taking a probiotic? I can recommend Theralac. theralac.com
replacing the good bacteria is important now that you're on antibiotics.

Also, are you detoxing? I found Chlorella to be very effective along with epson salt baths.

Keep posting and telling us how you're doing.
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Almost a month on ABX...

Postby RFK » Sun Sep 30, 2007 6:22 pm

Dear friends or should I say commrads?

I want to thank all of you who responded to my post. Your encouragement and advice has been very helpful. I am greatful to all you all...

I have had MS for 22 years out of which the last 4 have been progressive without any remissions. Up to 5 years ago I led a normal life with an EDSS score of less than 2. Now I don't even want to think about my score. In the last 5 years it has increased by at least 5 points. It has been a very rough road. I have lost many things due to this disease. My primary relationship, the home we owned together, my job and the ability to travel just to mention a few.

It has been close to a month since I started the Weldon protocol. I can't say that it has been easy. I have taken a turn for the worse. My deficits have increased and especially my walking has gotten a lot worse. I have lost the ability to walk and balance with out a cane and my core strength is less too. I seem to get fatigued much faster in the day and vertigo sets in around 10am. The only good part of this story is that I did have a reaction to the ABX tratment which tells me that I am heading in the right direction. (Hopefully.)

I started with 200mg of doxy and then on day 8, I added 250mg of Azithro. Things got a lot crazier at that point. In total, I took 3 doses of the Azithro over 9 days and then stopped it to give my self some time to acclimate.

After I stopped the Azithro my symtoms got milder but never returned to pre ABX levels. At this point it feels like I have had an excaserbation or worsening of my condition.

Now I am about to start the Azithro again but I am afraid it might be another part of the rollercoaster ride where I begin to freefall again.
All the suppliments and chinese herbs I'm taking, dont seem to be easing the ride although I would need to stop taking them all together to be certain.

If you could share your thoughts on my predicament I would appriciate it.

Thank you.

Bobbie
Last edited by RFK on Mon Oct 01, 2007 11:38 am, edited 1 time in total.
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Postby MacKintosh » Sun Sep 30, 2007 6:53 pm

Wow! You dove in both feet first, didn't you?! Most people do the recommended supps and vitamins for at least a month, start with doxy, then add azith SLOWLY. (I did the whole thing at once, but that's another story.)

So, you already know a reaction like yours says the abx are already addressing your infection. You should probably read Dr. Wheldon's paper again, where he addresses pseudo-exacerbations, which is what you're experiencing. The inflammation from the die-off of the bacteria will act exactly like an MS exacerbation, so you, naturally, think you're sliding. You're not. This is the standard two steps forward, one back, syndrome.

You WILL experience most of your MS symptoms again, even the forgotten ones, as you progress through this protocol. You WILL doubt that it's working for you (the "Im the only one this protocol won't work for" syndrome). You WILL get better and not even realize certain aspects of your MS have improved or disappeared. (Hmmm, the selective memory syndrome.)

I would suggest one azith a week til you tolerate it well. Then two a week, then the full three. Meanwhile, drink plenty of water to flush the toxic remains of the bacteria from your body, make sure you keep to your antioxidant regimen and take a probiotic or eat yoghurt (far from the time you take doxy) to keep the GOOD bacteria functioning well.

You've been sick with cpn/MS for a long time. Coming back won't be the easiest thing you've ever done, but coming back it is, nonetheless. Katman will likely be along soon to tell you she experienced what you are experiencing, but far, far worse. And it went on for months before she saw improvement, but her EDSS has dropped some five points and yours can, too. Hang in. We are all here with you and for you.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby Dovechick » Sun Sep 30, 2007 10:43 pm

Bobbie, I would say that your experience although scary is what it expect especially considering the number of years you have been ill. It is so hard trusting that this will work for you when all you feel is worse. I can only use my daughter's example to reassure you.
The difference between you and my daughter is that she was expecting a remission; however at the time of her third relapse in December 2005 (which went on for 5 months) she was going down hill so fast without let up that she spent 8 weeks in hospital, received 5 courses of predisnolone and at her worse was unable to do anything for herself, including breathing. After starting the ABX, some things got markedly worse and she was unable to tolerate the full doses of ABX. I reintroduced the Azi some 4 weeks later and it took a while for her to feel comfortable taking it.
The steroids helped to minimize the pseudo relapses that she was experiencing one after the other. It was July before she reached some sort of stability. In hind sight what has happened to her condition is that the damage that has not recovered so far is that which happened before the treatment, what has recovered is the 'damage' done since the treatment, although it can take up to 4 months to recover. Maybe you will notice that some parts of you are getting worse whilst some parts are getting better.
At her worse Ella's EDSS was 9, when she left hospital it was 7.5; now it is 5.5. Some aspect which are not measured by EDSS are much better: brain fog, sight, attitude to life, fatigue.
Its a tough ride, this treatment, a bit like riding a bucking horse, but it will be your saviour in the end.
Don't rush into the last antibiotic, Ella waited six months until she started it and when you do start slow one dose at a time. If you don't have any too severe reaction then you can double your dose.
To most people the effect of the supplements is not immediately noticeable. Basically they make sure that the body has the building block it needs to rebuild. But that takes time. B12 is maybe an exception for some people who feel a benefit from taking it almost immediately (in Ella's case B12 and D3 had an immediate effect on her body temperature) but some people are missing some vital elements to metabolise B12, but that is another story. NAC which is vital can cause quite noticeable reactions when you first take it which can add to your feeling less than healthy at the moment.
It is so sad and terrible this disease. It ruins young lives full of promise and expectation. Ella like you lost her primary relationship, her job, her chosen career, her home, her ability to move around at will. It has changed her life completely, but the treatment has given her the tools to start living again and she has embraced life wholeheartedly as you can see here: http://uk.youtube.com/user/ellafindlay
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby SarahLonglands » Mon Oct 01, 2007 4:10 am

Bobby, You can take just doxycycline for a long while and just add the azithromycin before you start pulses, which sounds like it will be a way off.

I started on doxy, with he supplements I was already taking and because at the time, David wanted to start me on roxithromycin because of the information then available, we had to get it from France and it took about three to our weeks. Doxy by itself is fine for far longer than that, though.

I had had MS for about the same time you have had, also progressive for about the same time. I was very bad cognitively when I started so didn't realize how bad I was. I slept for most of the first month so don't remember a lot of it. David assures me though, that I was delirious much of the time, often couldn't walk at all, and more which I am embarrassed to mention.

Vitamins D3 and B12 are essential, and as Michele says, the effect of B12 is noticeable straight away,especially if you can have regular injections for a while. NAC is eventually essential to avoid reinfection, but not essential whilst you are on abx. I didn't take it for eighteen months and then found it easy.

Remember that antibiotics don't cause a relapse and if someone has no need to take them, they will have no effect, and although it sounds awful to say you just have to grin and bear it, you do. Don't worry about cutting out the azith and NAC for now, if it helps.

And remember what you said at the end of your first ever post :wink: :
Ps: Seems like today my typing is better and my brain fog is (slightly) less.Ps: Seems like today my typing is better and my brain fog is (slightly) less.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Katman » Mon Oct 01, 2007 7:10 am

Bobby,

Very little can be added to the bright, optimistic, and true words already written here. Mainly I say that you have acknowledged that you have a foe and identified it and have undertaken the battle. The part that could be unfortunate is that we each have to fight alone but our cheering is deafening. We are all cheering for you. None of this is easy, but every day there are more of us who are getting better and more of us who have come back further than was ever thought possible. Indeed, "they" said you can't come back.

On the practical side: do you work, have children at home, or can you (as you have apparently done) put this as first priority? In my experience, all the discomfort (a euphemism if ever I heard one) has to be endured. It seems to depend on the circumstances of the individual - whether comfort is very important or "damn the torpedoes, full speed ahead". Or even a sane middle ground. In other words, as Dr. Stratton says: "Those with MS should go as fast as they can" We have a group on the other site who say "Whatever is worth doing, is worth overdoing" I don't necessarily advocate that, but it is essentially what I did at the beginning, and my improvement is much more than just dramatic. I started three years ago where you are and walking in from the barn yesterday after a very long day of hard work, nobody could ever have even suspected that I was once almost an invalid. So, we are here, and delighted that you came to the party.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Approaching 100 days...

Postby RFK » Thu Dec 06, 2007 8:42 pm

Dear friends,

I'm writing to give you an update of my experience on the ABX protocol. Its been 3 months since I began the Weldon protocol (13 weeks to be exact).

After the first 2 months I switched from doxy to roxy and have continued on that for the last 5 weeks. Once every 2 weeks I do 1 dose of Azithro and tend to feel worse the day after that. I take all my ABX doses late in the evening and I don't have any digestive counter indication.

I have continued to have some light Herx reactions, although they seem very mild to me. I continue to loose some hair and have transient light rashes as well as itching. I'm concerned that I am not having more intense side effects but as long as its working I'm grateful for the light Herx, if that's what it is.

The most noticeable improvement is in my incontinence and urinary urgency issues which almost completely gone. My Acupuncturist also notes that there is less heat in my system compared to the past, which translates to less inflammation.

Overall I have seen little improvement when it comes to my mobility, to the contrary I seem to be getting worse. I have gotten physically weaker and my balance and mobility are still worse than before I started this protocol. My balance is especially bad.

At this point I can't tell if I'm benefiting much from the ABX's but its also hard to tell from where I stand or rather attempt to stand, while still using the wall to prop myself up and maintain my balance.

I know that it might be impossible to answer this question but how soon should I expect to see any improvement from this ABX protocol? What was your experience?

When does one know its time to stop taking ABX and look for something else...
Another way to put it, when will I know that it hasn't worked.

If in 3 months from now everything is still the same should I keep doing the ABX's?

On an emotional level it is lonely out here. Like, searching in the dark with outstretched arms not knowing if I am even going in the right direction.

The tangible parts of my ABX experience are not encouraging yet.

Thank you for your support and presence,

Bobbie
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Postby MacKintosh » Thu Dec 06, 2007 9:29 pm

Bobbie, You are describing typical reactions to treatment. It sounds trite, but we remind everyone 'you'll probably feel worse before you feel better'. It's the nature of the beast; the beast doesn't go quietly. You will probably also heal opposite of the road you traveled as you got sicker. Your more recent symptoms will probably go away soonest, as the more recent damage is likely less severe and entrenched, so it recovers more easily.

When you begin to kill the bacteria, its death causes inflammation. Inflammation irritates MS symptoms. This is not a flare, nor is it a worsening. Remember, you've just hit a very comfortably ensconced, long-term resident of your body's cells with the eviction notice. It's going to fight back and the ensuing battle leaves you with depleted energy stores. Remember how you felt fighting a cold or flu? Like trash: exhausted and punky. Now multiply the severity of the infection and you realize you're right on target.

As for setting a timetable... Don't. Everybody has a different recovery rate. Oddly, many including myself, report the feeling of 'turning a corner' around the eight-month mark. Your hair loss mirrors mine, so maybe you'll have the same regrowth, which came for me at the five month mark. (And, boy, did it ever come back with a vengeance! All at once, about half an inch every three weeks, with far less grey!)

So, when are you going to add in the rest of the azithromycin dose?
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby Dovechick » Thu Dec 06, 2007 10:54 pm

Bobbie,
Sounds typical to me. I'm not surprised that your hair is still falling out, mine is 18 months after I started the protocol, but from being very nearly bald (from alopecia) and white haired (beause it appears to be made of stronger stuff) I now have dark hair all over my head and lots of it. Having said that I am still getting bald patched appearing regularly and then regrowth.
Of course getting your mobility back is your most important goal, but when you think how much circuitry is needed for your legs to work properly you will realise that this will take a while. Your bladder improvements are encouraging though and I'd say that after 13 weeks of treatment that was a good result.
As to the loneliness, you could always come and join us at CPn Help.org. That is not to say you should stop blogging here. This is a great site, but there are lots of people with MS and others suffering from other complaints whose experience on the ABX will help you answer the questions and provide examples on which to base your understnding of the process.
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