LDN 1.4 and other things

I've been on 1.4 mg/ml LDN for a couple of days, had been on 1.3 mg/ml for 5 days before that.

My sleeping is chaotic - got up yesterday at about 10am, slept from 4.30pm until 9.30pm, stayed up until 8am this morning, then back to bed and slept until 3pm this afternoon. Currently awake...

The facial pain and pressure is still being held at bay, though I keep having bouts of low level dizziness. Also feeling quite foggy brained; have extra loud tinnitus, have low level feelings of nausea; heavy legs and symptoms of sinusitis (post nasal drip, and bubbling noises from various bits of my face).

I had Acupuncture at the NHS Gateway Clinic in Clapham North, on Wednesday, and that cleared the dizziness and nausea for for a couple of days, but it's back again now.

Both my Acupuncturist and Osteopath have remarked, separately, that no matter what they do, they can't get their treatments to 'stick' ie they can rectify an imbalance but it constantly defaults back to the unbalanced state.

The only things that haven't been ME symptoms recently, pre-LDN, are the feelings of nausea and the heavy legs.

Saw my HRT Consultant (Nick Panay) a few days ago, he had the results of my blood tests from before Xmas. He said he's not seen such low levels of Estrogen in someone using HRT. My Estrogen levels were still those of someone post-meopausal, not someone who's been on a relatively high dose of supplementation for months. I've had my dose bumped up to the highest he's prepared to go with it, on the proviso I cut back down if there are any side effects, and I'll see him again in early March.
He suggested this may be due to ultrafast metabolisation in the liver. Though there's always the question of why, if I have a fast metabolism, I've doubled my body weight (105lbs to 210lbs) since I've been ill.

My GP has now referred me to St. Thomas' for investigation into liver functioning. The fast metabolism hypothesis might explain my odd experiences with drugs.

It occurred to my the other day, when I go to some Consultant or other for investigation into a symptom. eg breathing problems (query asthma), and their method of diagnosis is based on whether I respond to salbutamol or not, which I didn't, then I may be going undiagnosed for really 'simple' things. Same situation with sinusitus - I didn't respond to the antibiotics or the steroid nasal drops so it's been concluded that I don't have sinusitis.

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Hi.. there was some research done here in Australia on Staph in the nose in CFS which causes sinus like symptoms. They are saying that some varieties of Staph which are usually thought of as being harmless in CFS people may be producing toxins.

I had to have a nasel swab done to see if i had staph and what variety and they also tested what antibiotics worked on the staph i had before I got given antibiotics (the one i had was immune to more then half the antibiotics they tested on it).

So make sure you had a nasel swab done!! (as you may of been given the wrong antibiotics if you have staph causing your sinustitis symptoms.

The fast metabolism thing sounds a bit far fetched to me... esp since you have CFS.
 
Also take care with hormones as Dr Mikoviks is saying that many hormones (including oestrogen i think it was) can trigger off XMRV worst.. so if your CFS/ME gets any worst at all consider this.

Many of my hormonal levels have gone abnormally low.. and Im wondering if its my own body trying to stop the XMRV from worsening.
 
Hi, thanks for your comments.

The metabolism thing has always been an odd feature, since I was a teenager. I've never been able to get drunk (!), I develop tolerances incredibly quickly to certain drugs, and, conversely, I'm very very sensitive to others (LDN, possibly?).
It seems there are a number of different detoxing systems within the liver, so maybe it's a specific process that is working too quickly, rather than every system?

So far, in the 13 years I've had ME, the best thing, for me, has been to go on HRT - Estradot (estradiol); Intrinsa (testosterone) and Mirena IUD. It's 90% resolved the temperature problems and it's helped massively with stiff joints. Lots of other symptoms not touched, but I'm grateful that some things are better!
I stopped the HRT for a few months last year, to gauge what effects it was having, and the temperature and joint pain symptoms were exacerbated tremendously.
I think I read on Jaime Deckoff-Jones' blog that she was on high doses of hormone replacement, but I've been unable to find out exactly what she's on.

My ME appeared very suddenly after an operation I had to remove a fibroid. Looking back, it appears almost as if my ovaries shut down immediately after the surgery. There seems to be some anecdotal knowledge of this effect (according to one of the nurses at my Gynecology clinic), but no research has been done to investigate yet.
My Gyn Consultant thinks that a huge number of women diagnosed with ME/CFS are actually suffering from hormone imbalance, though whether he'll continue thinking that after dealing with me and my oddnesses, I don't know, lol.

From my experience, I'd say try hormone replacement, it's certainly helped me.

The info about the staph infection is interesting - I'll chase that up. I've had terrible vertigo and dizziness for the past couple of years since my sinus probs really got bad. I'd love to get that under some control!
 

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