22nd pulse 18th full 5 day

Forgot to post these lately(or may have lost one I think)

October 27-31

Hi, could I take amoxicilin with wheldon protocol?

Hi, I´m still on wheldon protocol, with roxi and doxyi and tinii, and my doctor gave me an amoxicillini with clavulanic acid. It is for inflammationi in my right ear, there were found streptococus agalactiae B and Enterococcus species. These germs makes me an inflammation of the ear canal and the middle ear, a big headache, dizziness, and I have found brain atrophy too. Brain atrophy is greater on the side of the sick ear..

Once again...

This time in the middle of the night.  Woke up with chills...lasted about 2 hours...then low grade fever.  Trying get up at 5am, and my legs were completely stiff.  I couldn't bend them at the knees.  I had to call the care attendents to get me out of bed and into my powerchair.  At 7am, I stood up to urinate and everything appeared normal.  We'll see how things are when I try to go to bed tonight.

This all puzzles me.  I'm still taking NACi, doxyi, and rithro daily.  Most days are pretty good.  I'm not walking any better, but its not any worse either.

I don't pulse anymore...last time my PA noticed my heart skipped beats and suggested I stop.  I did, and my last checkup two weeks ago showed no problems.

Pulse #37 and back to Tinidazole

Pulse #37 just started and back with Tinidazole again.  I have been very week so not keen to Start ... but hey-ho, it seems that there are girlies out there with more bottle than me.  I thought that I'd better crack on.



Vega machine / zapper

A week ago, I had just returned from London after having made a long round trip with an overnight stay. I'd met up with an ex-CAPer / Lyme survivor. This chap was hosting a visitor that was doing Vega testing on a whole tump of people.

Anyway, I had the test run on me. I was already well aware that this sort of thing is regarded as quackery by the medical establishment. After a good 40 minutes of testing, I was shown my results. I was told that I had all sorts of infectionsi, including an intestinal worm, babesia, CMV, flavivirus, borrelia and yes, Chlamydia Pneumonia.


Hi all I need some help .

 For those who are experienced :  what is it best in the snow a mobility scooter with chains or a wheelchair with front wheels' small skies.

it is my first time in the snow and I need some help !

thank you

Hothouse flower

I am getting to the point that under good conditions I can have what I call a normal (for me) life

I am doing much better than five years ago

I can work at non strenous jobs part time can get exercise twice a week and get some sleep at night

But  to my surprise I am still a hothouse flower

Recently I went to a workshop in the desert and camped for a few days  It was hot ( I don't do well in heat and cold ) I did not have the chance to lay down which I do frequently in my everyday life etc

I had a very hard time sleeping and got to the point where I could not walk very far I had to get into my car to get from point to point even short distances.

Francisco !!!!! Has just had a beautiful baby girl!


Hello, i am new to this, i have recently found out about Chlamydia Pneumoniae and i am requesting anyones help to find the antibioticsi for this. I suffer crom chronic pain amongst  other things. I live in the UK. Can anyone please help me. Thank you..Smile


Please i need advise

Hi all, i really need your advise. Specially from those living in the uk and progressing.

i am reaching cracking point. I had the occupational therapist i have phoned the council but i seem not to get good advise.

from the services you can get buy or pay ,.... which one is the one you value the most? Eg cleaner, someone to look after children take them to school,  carer. I have the help of my husband but he is reaching a point where all this is too much,  keeping his work, looking after children, cooking, shoping.... all too intense because of his demanding job. And he travels a lot too.

Pulse #31

Hi everyone, Terri starts pulse #31 next week and is still experiencing slow steady improvements and ample evidence that the anti’s are still doing their job.

We got to three week pulses but found them too onerous with not enough recovery time between pulses and so we reverted back to four week pulses.

Diferent antibiotics

The capsules consist of 95 mg of clarithromycin, 45 mg of rifabutin, and 10 mg of clofazimine. RHB-104 From Readhill. Interesting.<

5 year and 5 month update

This may be a long read – so probably best to settle down with a nice cup of herbal tea first!

I think it must be true that time really does fly when you’re having fun, as I really can’t believe I’ve been taking antibioticsi for 5 years and 5 months now.  Not exactly sure I can describe the whole adventure as ‘fun’, but it certainly continues to be both fascinating and bewildering. 

I had a really positive appointment with my neurologist yesterday – he’s been supportive all along and, whilst I’m quite happy to ‘go it alone’ with all of this, which I have to do most of the time, it’s still great to have the chance to impress a doctor with the improvements so far!

Recent update minocycline

 Hi all,

yesterday i came across with a talk from a canadian university were they talked about what is promising in MSi for the future. Thay talked about ocrelizumab for ppmsi , stem cells and minocycline .<

Pendant alarm

sorry, this is not cpni related. But i was wondering if any of you that lives in the UK has a pendant alarm that works well and could recommend. I am struggling since i have so many to choose from and they lack of info some of theM. Please help......

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