Frank ABX diary

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

Postby Frank » Sun Aug 05, 2007 10:22 am

Thanks for all your encouraging words :) !
I currently think the ABX are working very good for me.
The little setbacks I saw are not too difficult to tolerate when I look at the benefits I had since I stated with the protocol.

Sara, the "L'Hermittes sign" does look like the symptom I tried to describe, thanks.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
Family Elder
 
Posts: 543
Joined: Wed Jan 03, 2007 4:00 pm
Location: Germany

Advertisement

Postby MacKintosh » Sun Aug 05, 2007 7:25 pm

Frank, Having finally read your entire diary, I can't tell you how pleased I am for you!!! I've been on antibiotics for 22 months now and I can confirm you are going through what all the rest of us did and I see nothing out of the ordinary in your tale.

I keep saying, 'you will revisit all your old symptoms on this protocol'. I should revise it to 'and you will find a few you don't know you have', as it's likely you have cpn infection in places you aren't aware of. (It's only logical, really.)

I've been very lucky and have had few reactions to treatment, but they are scary when they do happen. Keep writing and someone will be here to walk you through it.
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
MacKintosh
Family Elder
 
Posts: 467
Joined: Sat Sep 24, 2005 3:00 pm
Location: Chicago area

Postby Frank » Sun Aug 12, 2007 3:05 pm

1st. roundup - after 4 month (1 pulse completed)
--------------------------------------------------------------

I regard the past four month as the first real drug related improvement for me. Besides the ABX I also take LDN (I will also put this post in the LDN forum) so its not easy to say where the benefits come from.

I'm still cautious not to get too enthusiastic about it, because I always used to do better during the spring/summer month. The next four month will make clear how much of the improvements I can maintain throughout autumn and winter.


Here is a list of the improvements I have seen:
-----------------------------------------------------------

-- The stability/strength in my right foot got better (aprox. 30%).

-- My right leg became really heavy after walking for an hour (comparable to a healthy person who would mount 3kg around his ankel), that got better (aprox. 40%)

-- I can walk much further. When I started the maximum distance I managed to walk was 70 minutes at about 5km/h. Now I am able to walk for 120min at about 6km/h and feeling better afterwards.

-- When I started I was not able to run after 35min of walking. Now (I tried it today), I can run (not long and not that perfect) after 45 minutes even after 65 Minutes I could run even though I clearly felt a motoric handicap.

-- I used to feel a moderate fatique after longer walks or similar workout, that is nearly gone now.

-- Spacticity (which becomes evident after waking up or when I sit for a long (1 hour+) time) impoved noticeable - this might get worse again when it gets colder outside.

-- L'Hermittes signs in my feet improved, though I think it has been even better when I reported that impovement about a week ago.

-- Regarding the balance I'm not sure. I was doing pretty good during my holidays. I think I'm still a bit better when I'm trying to stand on one foot, but my walking balance might sill be the same as when I started with the ABX.


The numbness in all my fingertips of both hands, that occured during the first puls of Tinidazole, is still not completly gone, but its much better now and I think it is still getting better slowly.


--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
Family Elder
 
Posts: 543
Joined: Wed Jan 03, 2007 4:00 pm
Location: Germany

Postby MacKintosh » Sun Aug 12, 2007 7:23 pm

Wow; better and better news!
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
MacKintosh
Family Elder
 
Posts: 467
Joined: Sat Sep 24, 2005 3:00 pm
Location: Chicago area

Postby SarahLonglands » Mon Aug 13, 2007 10:43 am

Now, that will be interesting Frank, to see how you fare over the coming few months. I never found an difference relapse-wise between the seasons and in act my biggest relapse ever happened in the middle of August, six years ago. Make it through to the spring and you should be well away!

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.
SarahLonglands
Family Elder
 
Posts: 2109
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby Frank » Sun Aug 19, 2007 8:06 am

I'm going to start my second pulse tomorrow.
The numbness in my fingers is still not completly gone but I would start the pulse anyway.

Currently I feel pretty good and I go for longer walks two times a week now: 1x90 min and 1x120min.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
Family Elder
 
Posts: 543
Joined: Wed Jan 03, 2007 4:00 pm
Location: Germany

Postby Frank » Sat Aug 25, 2007 5:55 am

I completed my second pulse yesterday.
There was no exacerbation regarding the numbness of my fingers this time.
I also did not experience any additional fatique like I did on the first pulse.

I noticed that the controle of my right arm (one of my minor MS symptoms) got slightly worse on the fourth day, which might still be remaining but I only notice it on some occations.
On the third and on the fifth day I felt a mild to moderate pressure and a dragging pain in both of my hips joints.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
Family Elder
 
Posts: 543
Joined: Wed Jan 03, 2007 4:00 pm
Location: Germany

Postby SarahLonglands » Wed Aug 29, 2007 5:33 am

Frank, you're doing well! Lets's hope that it continues right through to the spring, then you'll be well away.

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.
SarahLonglands
Family Elder
 
Posts: 2109
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby Frank » Sat Sep 01, 2007 7:15 am

Since six days I holded all physical activities, because at the site where I had a torn ligament about ten years ago my ankle is swollen.
I cant really say how that came and regardles the protection it did not get much better over the past week.
I certainly had more physical activities over the past weeks (which is acually a good sign regarding my MS state), but that kind of
workout is not thought to do any harm.

On that occation I want to report some other health related things I noticed, which are not worth to tell each by itself, but they
come kind too frequent.

Maybe six weeks ago I had a herpes simplex on one side of my nose. When it was gone I had some sort of rash (herpes too?) above
my lips. After that I had some blisters on the left inner side of my lower lips.
Then the right corner of my mouth was slightly ripped.
Today I noticed some bisters on the right side of my lower lips.
As I saw yesterday I also have some kind of rash on the left and right side of my back up to the shoulders.

I get such "symptoms" from time to time (maybe once per year) but this is much more frequent...

Would you guess that this comes togehter with the ABX, as a direct sideeffect or due to a weakened immunesystem (herpes simplex)?
I'm surely going to see a doctor for my ankle next week. I also had a blood test a week before and will check the results.

Thanks
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
Family Elder
 
Posts: 543
Joined: Wed Jan 03, 2007 4:00 pm
Location: Germany

Postby MacKintosh » Thu Sep 06, 2007 9:27 am

Frank, A lot of us noticed skin rashes or breakouts, especially in the early days of abx treatment. I'd say it's normal. In my case, after about a month, my hair started to fall out. It was alarming, since I have shoulder length hair and lots of it. Turns out, as more people do the protocol, we find hair loss and regrowth are our normal. Cpn bacteria must really find a great environment in hair follicles. It's probably the same for skin and any number of other prime lodging spots for this insidious disease.
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
MacKintosh
Family Elder
 
Posts: 467
Joined: Sat Sep 24, 2005 3:00 pm
Location: Chicago area

Postby CureOrBust » Thu Sep 06, 2007 5:12 pm

MacKintosh wrote:Cpn bacteria must really find a great environment in hair follicles. It's probably the same for skin and any number of other prime lodging spots for this insidious disease.
If this is the reason, it sounds like a prime target for testing.
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby MacKintosh » Thu Sep 06, 2007 5:26 pm

Wow! Could it be that easy?! Why don't you post your idea over on the other site... I would never take credit for such a (maybe profound) insight. Excellent idea!
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
MacKintosh
Family Elder
 
Posts: 467
Joined: Sat Sep 24, 2005 3:00 pm
Location: Chicago area

Postby Dovechick » Fri Sep 07, 2007 12:11 am

I'm a prime example of the prevalence of Cpn in hair follicles. I have alopecia areata, and at the beginning of the treatment I had a dramatic growth of hair. But the story does not stop there, the hair does not reappear and stay. The balance is now towards regrowth but the falling out is still going on. I have recorded the progress over the months and have illustrated it with a number of sequential photographs.
The story goes on, and I will update my progress in a little while, but in the mean time to get a graphic illustration of what Cpn can do to a scalp, have a look at Patients' stories at the top of the page in CPn Help.org.

I have also noticed an increase in things that have bothered me in the past, such as warts, rashes and an old foot injury. I think it was Dr Stratton who said that gravity also plays a part in where Cpn settles. Quite a few people have swollen feet and ankles, burning sensations, joint problems, soft tissue problems in their lower limbs, especially during a pulse.
Michele
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
User avatar
Dovechick
Family Elder
 
Posts: 349
Joined: Sun Feb 12, 2006 4:00 pm
Location: Sussex UK

Postby speedbird » Fri Sep 07, 2007 5:10 am

I can confirm Dovechick's reference to gravity playing a part in where Cpn settles especially with regard to skin symptoms. For a number of years before I had the dx of MS I would get recurring "bull's eye" lesions on my lower legs. My doctor said that he didn't know what it was and left it at that; I of course thought that it was Lyme disease after searching for pictures of the rash on the internet. When I saw Dr Wheldon he said that it could be a vasculitic effect of Cpn and even if it was Lyme then the CAP would deal with it. In the first month of treatment I recorded that.

The leg lesions are still spreading and itchy, I have not had anything like this before; when they appeared previously they stayed much smaller, less of them, not itchy and burning. The first one appeared around the NAC testing time.


Cortisone cream helped with the itching, which was intense and within about 2 weeks the addition of the supplement Chlorella helped to reduce the effects of the antibiotic kill. It's all about helping your body to help itself.

I have some pictures of the onset of the leg rash when I began the abx regime at http://www.hartsgrove.doncaz.co.uk/legs.html
HTH, Carol :)
PS. I didn't notice any hair loss, but it's growing awfully fast. :wink:
Progressive MS dx. 12/06. Currently on CAP for CPN: Wheldon protocol. LDN 4.5ml.
User avatar
speedbird
Getting to Know You...
 
Posts: 13
Joined: Wed May 09, 2007 3:00 pm
Location: UK

Postby SarahLonglands » Fri Sep 07, 2007 6:04 am

Oops, I thought I had replied to this one, but I guess I forgot to press the submit button. Anyway, everyone has come out with their tales of rashes and so forth, so I won't be repetitive!

I hope your torn ligament gets better soon, Frank. I did the same with my left knee when I was fourteen and it took ages to repair. For a while my knee was twice its normal size. 8O

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.
SarahLonglands
Family Elder
 
Posts: 2109
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

PreviousNext

Return to Antibiotics

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service