Alexandra Gibbs's blog

On fibrinolytics for over a month plus CAP

Submitted by Alexandra Gibbs on Fri, 2007-11-23 06:03
I'm now on my 39th/40th pulse of metronidazole and have completed over a month on 2 fibrinolytics, lumbrokinase and serrapeptase. As the course of this month has worn on I have noticed that I have greatly increased tingling in both feet and especially in the newly formed deficits in my left knee and calf. My walking has become very bad and I can barely manage 400 meters. It is especially bad in the mornings and has seemed incredibly stiff and malcoordinated since starting this pulse. The bladder has been very overactive as well and has disrupted my sleep more than usual. I have noticed quite a lot of pain in my head especially at night and I'm cold a lot of the time. I've also developed incredibly tiredness which is not something I have experienced very much before.

Using the fibrinolytic, lumbrokinase in an attempt to break down fibrin deposits

Submitted by Alexandra Gibbs on Sat, 2007-10-20 08:24
I resumed doxicycline and roxithromycin after getting the all clear on liver function. I then managed 5 days on metronidazole and 400mg of plaquenil daily. I've added the plaquenil to my metronidazole pulse as this may also be effective in killing off spirochetes/chlamydia/mycoplasma. This is slightly clutching at straws since I've done a good, long 2.75 years on the combination of doxicycline, roxithromycin and metronidazole and have seen no sustained improvements and recently have developed new deficits affecting my left leg and right hand. These have improved somewhat but the disease has definitely spread since starting the antibiotics.

Fibrin accumulates in MS lesions?

Submitted by Alexandra Gibbs on Tue, 2007-10-09 06:05
I was very interested by Marie's postings on peat mud baths and fibrinolytics and hypercoagulation. I recall reading that fibrin is excessive in people with MS and I think it accumulates around MS lesions. I'm wondering if we should all be taking fibrinolytics as well as antibiotics or should the antibiotics clear up the fibrin anyway?

Chickened out from break from antibiotics now back on doxy and roxy

Submitted by Alexandra Gibbs on Fri, 2007-10-05 05:04
After many days and telephone calls I finally got clear liver function tests back and so IMMEDIATELY gobbled some doxycycline and roxithromycin as I've been very worried about the new twitchiness in my right finger and want to restart the CAP after my 2 week break. I hope that after 2 and 3/4 years I shan't have given the bugs resistance! I think it very odd that the twitchiness in my right finger appeared after about 5 days of double dose doxycycline. However maybe I have ALS as well...see below! Interestingly I came across this excerpt from an ALS webiste on Lyme and antibiotics: "

Left leg symptoms from latest relapse on the wane

Submitted by Alexandra Gibbs on Tue, 2007-10-02 13:27
I have got some good news to report. The new needling sensation in the left knee from my August relapse has not been felt for about a week. The stiffness around the left knee is also much improved and I've had barely any burning sensation in the left calf. However a revived twitchiness in the little finger of the right hand and a strange coldness between the index and third finger is still a bit anxiety inducing as I hadn't noticed these much before and they are really quite noticeable. The movement induced phosphenes also seem rather prevalent and my walking is still terrible at about 400 meters and the steroid induced silkiness has gone right back to peg leg. I'm still not back on ANY antibiotics but am religiously consuming antioxidants, D and NAC and inosine.

More symptoms

Submitted by Alexandra Gibbs on Tue, 2007-09-25 12:15
I am very sorry to report that yet more symptoms have worsened, this time in my right hand. I am suffering quite badly from a new twitchiness in the right little finger and a new coldness between the index finger and third finger. I may have had these symptoms much more mildly in the past but barely noticed them. I came off double dose doxycline at the weekend after a bout of stomach trouble and can't wait to go back on it as the right hand trouble seemed to start when I came off the doxycycline. All the other symptoms seem much the same. Ho hum.

More doxycycline

Submitted by Alexandra Gibbs on Mon, 2007-09-17 05:24
The new problems in my left leg remain pretty active and painful. I have therefore decided to increase the amount of doxycycline and roxithromycin which I take over the next week to see if this has any effect on the new deficits in my left leg. I intend to double the dose to 400mg doxycycline daily and 600mg of roxithromycin daily.

I love steroids!

Submitted by Alexandra Gibbs on Fri, 2007-09-14 05:40
I am on my final 5th day of 500mg of oral methylprednisolone and what a difference this drug makes to the relapse in my legs and my mental state. I feel very happy at yesterday managing about 400 meters which is so much better than the last month or so. My right leg is no longer stiff but rather floppy and silky. The brand new rawness and stiffness in my left knee has improved a bit and the needling sensation has diminished. However the tingling in the whole of the left calf has been flaring quite a bit especially in the evenings. In fact the steroids seem to have really provoked quite a lot of tingling throughout both legs and feet. The night spasms immediately returned on the first day steroids and I've had to use 4mg of zanaflex every night.

Yet another relapse after 2.6yrs on the combined antibiotic protocol

Submitted by Alexandra Gibbs on Sun, 2007-09-09 12:55
I have had a disastrous trip to Scotland. On arrival in Edinburgh last Friday we tried valiantly to celebrate our holiday with a few drinks but my bad right leg was more than usually flumoxed by alcohol and my bladder seemed much weaker. As the weekend prgressed it was evident both Martin and I had some kind of cold so that Saturday we spent simply visiting Stockbridge by taxi and I managed about 100 meters on the Royal Mile before my leg failed. By mid-week we had travelled by car to Perthshire and this is when the relapse really kicked in and I could barely manage 5 meters again and was stumbling badly. The numbness and rawness which had recently hit my left knee returned with a vengeance and a new needling sensation appeared on the left calf.