blogs

P

Pulse 4!

Nearly done! Two more tabs and I get three weeks off! And, yes, it has been tough, as DW and Sarah warned me. I've been much better at taking my ABXi on an empty tummy. I lost so much weight when I was first diagnosed, I was very skinny! But, 10 years later, I'm putting weight on, maybe too much, but I've a feeling it's good, and I feel sure, I'll be walking my very loved guide dog, soon.

It goes like this ...

I pop Metroi as soon as I wake and again, about, 8 hours later.  The third, again, 7 or 8 hours later, just before bed, taking Roxyi an hour, or so, before tea and Doxyi, after, and supplementsi then, although I sometimes forget, but always take Bs.

NAC and massage - updated

I've been lucky, I've had reactions, but nothing too terrible.

My story of cpn (???)

Ok. To cut the long story short. 

For 2 years I have been dealing with prostatitis, urethritis and reactive arthritis after an intercourse. I have also problems with fast heart rate and body tempature which  I am always very sensitive to cold.

I had symptom free time for almost 4 months. Then the thing came back again. Countless semen culture, urine culture ,some specific tests for chlamydia trachomatis pcri , mycoplasma pcr were negative. However last week a cpni test IgGi came positive. Test value was 48 which was over the normal test value 22.

I live in Turkey. I must say doctors are not helping me much because they are imcompetent even in the research universities. 

The Fallout

it’s been a fortnight since i finished pulse 3. After effects were nausea, fatigue, more fatigue, exhaustion,  more aching, basically, every reason to jump off the world. Then it, suddenly, felt so much better! Today, my drop-foot was quite severe, but, as Paul was there, to lean on, i still went for a long, long dog walk. I ache, as much as  before, but, really, that isn’t too much. Sleep has been elusive, i have drunk a little and blamrd that, but I had to drink champagne, at a funeral, two days ago, and, still, felt good  yesterday! i’ve  had night sweats but,  at 49, i think that is probably to be expected!

Pulse # 45

Last Monday, I was so inspired by JaneK's post, I decided to start a pulse myself. I am early this time but at least I get it in before my holiday. This is, I think, pulse # 45. I have one more day to go.

Pulse 3

Finished pulse number 3 yesterday, it wasn't a walk in the park, but nor was it too difficult. Yesterday I was more awake than for ages, but, slept dreadfully last night, so i'm tired today and our long dog walk, on the beach, exhausted me, i ached (strangely, n my arms,hands and and elbows) but, again,not too much. I haven't had the CPni test, and won't, for the same reason haven't asked for an updated MS dxi ... suggestion!  I don't think many of us here are 'victims', just people carrying their crosses with as much grace and humour as possible. And i'm looking forward to a drink tomorrow night!

Jane

Stopping the cycle

What can one do to kill CPNi without taking antibioticsi?

I have read that Ozone can kill one phase of CPN. Will that stop the cycle?

Pulse # 44

After my marathon cold coming to an stubborn end, I have finally been able to pulse again. This morning, I got up early (for me) and took a tinii tab. This is pulse 44. I had planned on using metroi but the tini were close at hand. Let's see how we go with this one.

need advice please

Hi all

I am writing again in the hopes of some advice as i didnt receive much of a response.

Summary:

51 yr old australian woman, with chronically remitting, unexplained symptoms ie joint pain, headaches, utis, nausea etc

I re developed severe thoracic joint pain with headaches late April 17

Stem cells ( had a bad cold) in may. Mild asthmai like symptoms phx childhood asthma

2 days later, 1st episode rapid af

2 days after this, respiratory symptoms. Initially thought to be asthma exac by a respiratory infection. Didnt respond to medication

Symptoms are..low grade fever, cough, shortness of breath especially on exertion, chest tightness and a feeling of suffocation.

Fever responded to keflex.

Tests;

lipoic acid and SPMS

Oral lipoic acid, a powerful antioxidant">i, has been found to reduce the progress of brain atrophy in secondary progressive MSi.

 

Here is a link to this fascinating paper. http://nn.neurology.org/content/4/5/e374.full.pdf<   The trial was a small one, but the authors hope to conduct larger multicentre trials in the future.

Reaction

The day before yesterday I walked home, an easy peesy walk, wearing my ruck sack, which had very little weight, but some. As I reached the end of my street the weight threw my balance off, so I couldn't help but stumble backwards into the road and fall. Thankfully our quiet road was empty so, having righted myself, I continued on my way, staying close to the wall and now I take hubby out with me. I've always been very, very strong and capable and walked fast, but can't now,so this scared me, and convinced the neighbours that I'm a boozer! I began pulse 2 today with a little trepidation but realised my vibrating ear drum has been quiet for a few weeks, so I'm feeling it willall be worth it, just take David's advice, to be careful of falls, seriously!

Astaxanthin

Here is a fascinating paper entitled “Neuroprotective mechanisms of astaxanthin: a potential therapeutic role in preserving cognitive function in age and neurodegeneration.” Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5352583/<  The complete paper is available as a pdf. 

Astaxanthin supplementation sounds a good idea.

Hello, I am new here, suffer from CF and need advice for CAP

Hello everybody,

After much exploring and reading this very informative site, and after much thinking and hesitation, I have decided to finally make my debut on here.

I have been suffering from Chronic Fatigue syndromei since being a teenager in the late 1980’s, but have only been diagnosed in 2011.

Pulse #41

Hi folks, pleased to say that Terri completed her 41st pulse yesterday, improvements are still coming slowly but more importantly they are staying with us.The pulses are much easier now but it is still apparent that the Tinni is still doing its job. Tiredness and extra inflamation during or after pulsing is now down to just a few days and is so much easier to cope with.

Syndicate content