Post Christmas hangover

I managed to eat a range of foods over Christmas including my father's famous cheesecake and baked custard with icecream.  Way outside the zone! (first time I have tasted it).

Today I am feeling the effects. .. was still feeling a bit brave and had some banana on my plain rice bubbles this morning...   not a good idea but it tasted so good!

Feel some discomfort in upper central abdomen, some nausea and fatigue but not as severe as in the past . .. I think I need a few days of strict diet to bring symptoms back under control.  Head is foggy and eyes want to close.  Rosacea rash seems constant even though I have beetroot dip, dairy, ham, homemade biscuits etc etc. I am curious to see what affect, if any, the hookworm therapy has on this horrible facial rash.

I have reduced PPI medication to two 10 mg tablets a day instead of the two 20mg a day to see how I manage this.  

Restless leg and low iron

When I reached 10 weeks of innoculation I developed restless leg syndrome which I thought was related to low magnesium .. after foot baths with epson salts and no noticeable improvement .. blood results revealed low iron levels due to hookworm activity.  I am now taking 105mg of elemental iron a day, sometimes double this depending on where I am in my cycle.  The restless leg has subsided, but my legs are still aching and feet throbbing.

I read gutbuddies blog on restless leg and it seems that for John? the worms improved his restless leg syndrome. .. . various reasons for restless leg.

I really don't want to start again with the hookworm therapy especially as I am nearly at the three month mark and from this point I am hoping to see some benefits.  If I do need to start again I will do so at a lower dose (10) after bolstering iron reserves more aggressively... so I am really hoping that the supplements do the trick. 

17 December 2010

The iron suppliments seem to be working, the restless leg is gone although my legs are aching a bit and feet throbbing  a little.  My energy has also been better, two days ago I was feeling amazingly well .. a great sense of wellbeing!  So well infact, that I ate well outside my dietary limitations.  Some gelato (only vanilla), some carob coated honeycomb, then the next day I felt really cocky and had some almonds and cashews.  Day 3 .. No good!  I was wiped out and had to lie down for a few hours, couldn't move or keep my eyes open .. it was like shooting up (I imagine), an overdose.  The rest of the day spent in a daze.  Today I am not so good but a little better .. abstinence is the only solution unless I want to spend days in recovery mode, my energy levels low, digestive system working overtime with dyspepsia, stomach and bowel pain.

The three month mark is just before Christmas day .. although I am not expecting a miraculous turn around at that marker .. I think I will be very conservative at Christmas, definitely no pudd, I will stick to what I know works for me as much as possible ... I have learnt my lesson (I keep forgetting it).

My immunologist noted the evidence of hookworm activity in my  body.  "Your immune system knows they are there" she said ... also said if my iron levels don't improve I will need to abort my experiment...

so still waiting for hard evidence of improvements ..

7 December 2010

It is only 2 weeks or so before the 3 month period.  My blood results came back today and my iron levels have gone down again.  I have started supplements .. "ferro-gradumet" .. which according to Dr Google are well tolerated by sensitive stomachs.  I need to see an improvement in my iron levels within about 3 weeks otherwise I will need to terminate the therapy, build my iron reserves and try again on a lower dose.

The worms may not like the iron and I may be battling worm symptoms as well as intolerance symptoms from the iron tablets. .. somehow they need to be absorbed as I really don't want to start again.

5 December 2010 (75 days)

I write today because I have been feeling particularly awful the last 2 days.  Bad indigestion .. even with PPI's .. debilitating energy loss.  Can't pin point a dietary misdemeanour although I did have some baked potato cut up small so they were nice and crunchy with perhaps a tad too much oil two days ago.  I am hoping it is the worms.  It will be only a few more weeks before things start to turn around according to the literature, and Garin (www.wormtherapy.com).

Will worms really be forever is my question!

I have had blood tests that indicate my iron levels are down and eosinophilia activity is up .. evidence of worm activity most likely.  I am trying to increase the iron in my diet.

31 November 2010

I am back in the coping stage, back to 40mg of PPI's a day .. a premature experiement I am thinking when I look at my last blog.  Maintaining diet, suffering from pains in stomach even on PPI's, constantly starving but unable to eat much, rosacea most unattractive (it has been much worse), restless legs at night, throbbing feet. .. some of these are newish symptoms.

Doing hookworm therapy as a peri-menopausal 49 year old woman is challenging, particularly when hormones are playing havoc with the immune system, throw in 20 hookworms in to the mix and abracadabra! .. nothing obvious to report as yet  .. perhaps a small change here and there .. a good day last week .. but generally still struggling to feel good.

26 November 2010

I get nervous saying I feel good .. but I do!  Earlier this week was a different story .. almost forgotten now what the problem was .. general digestive upsets and lower abdominal pain, restless legs and sore feet, toothache ...  All seem fine now ..  I haven't had a PPI today .. yet... , my stomach seems quite settled.  Shall wait until I lie down before getting too excited. 

I can't say I am running around like a kid, but I did move about 10 huge bags of ceiling batts, cleaned the bathroom and stove ... and went shopping ..  so energy levels good.

The worms seemed to have been quite creative in the last month or so making themselves known around the traps.  This is probably a good sign.  Now, some days are good, some days not so good. .. I think there might be some improvement generally, but not enough yet to expand the diet.  If my stomach settles down on the food I am now eating then that would be fantastic.  Then slow steps forward from there.  Time will tell.

20 November 2010 (59 days)

Things have settled down as far as worm world is concerned.  Feeling quite good, the lethargy and fatigue is gone.  Rosacea is calming down after a big flare (with rosex topical gel) and abstinance (from most food).  Feet are not throbbing.. life is good. . HHT (hormone hell time) hasn't been so hellish except for major dummy spit.  Still maintaining diet and PPIs for stomach... have already bought probiotics hoping that soon I will be able to tolerate them.


Another month or so before I will be game to lob a small piece of mango, or a slice of apple ... mmmm just in time for Christmas perhaps.  Fingers crossed as always.

51 days

Sore feet, sharp pains in joints and the strange sensation of throbbing .. imagine an electrical current pulsing throught the feet.  Two nights ago I had restless legs, moving involuntarily.  Rosacea is really bad.  I am a pretty picture all round.

The feet symptoms may be exacerbated by the hookworms heading into HHT (hormonal hell time).  Probably need to get thyroid rechecked .. feet could be related to Hashimotos, schleromderma, menopause (bring it on), lupus... according to Dr Google.

Waiting on results of blood tests from immunologist. 

Hormones, hookworm, immunity.  What fun!

9 November 2010

Not much to report .. have been feeling quite good last couple of days .. except for when I didn't take PPI for dyspepsia last night and couldn't sleep.  .. had to pop another pill.  PPI's are not good for long term use.  They play havoc with absorption of essential minerals increasing the risk of bone breaks. ( http://www.jonbarron.org/blog/2010/06/proton-pump-inhibitors-and-fractures.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+jonbarron%2FDGMO+%28The+Baseline+of+Health+Blog%29 ).

 

If I am able to tolerate a wider range of foods, I am hoping gut health will improve, and therefore my reliance on PPIs.  Another month and three weeks or so and I might be able to try reintroducing some foods and gut healing products I hope.  This might even improve my rosacea.  http://rosacea-support.org/sibo-eradication-clears-rosacea-are-you-serious.html

The immune system and digestive system are bedfellows.  A healthy digestive system therefore must improve immunity.  

My appointment with an immunologist did not provide any answers to my food intolerance problems and lupus like symptoms.  Blood results need to progress to the next level before autoimmune system labels are applied .. hopefully there will be no progression (40:1 4 years ago, 160:1 this year, 320:1 for the labelling to begin). 

When I told the specialist I had begun hookworm therapy she asked if it was working .. so no shock horror.

6 weeks tomorrow

Coming up to 42 days since innoculation with 20 hookworm and the waiting is almost unbearable.  I would love to feel good, a rarity at the moment.  I have had a couple of good days, but mostly they are parts of days rather than a whole days.  Not much to report... just waiting for the 3 month mark.  I read John Scott's blurb (see hookworm links) regularly hoping to see some parallels.. but ... different bodies, different disease processes..... I would love to report some noticeable improvements.

Today started out okay, not so good now.

Next week I see an immunologist for the first time.  Of course I am hoping that he has some interest in hookworm treatment. 

32 days and counting .. over 4 weeks!

The days are a blur .. fighting fatigue .. (or should I say giving in to fatigue) good days and bad .. today I was wiped out for most of the day in bed unable to even read.  I got out of bed, ate, had a shower, got dressed in my gardening gear and stumbled back in to bed (minus the gumboots)... great day for gardening too .. cloudy, cool and overcast .. I had plantings in mind .. another day wasted .. lying flat out with my eyes closed and feet throbbing! Incredible fatigue that seemed to come on after eating.  Tonight I am in recovery.

Fortunately I was okay yesterday .. I had put off a research trip to the museum the day before due to feeling weird .. my head was not functioning and I could only manage folding and other light housework jobs in slow motion.  The strangest head shaking experience.  Have had a frontal headache for last couple of days too ....  haven't had one of these for a while. .. avoiding particular foods with offending chemicals had eliminated these.

I can't recall having eaten anything that would have brought this on .. again ..  exacerbation of symptoms courtesy of my blood sucking friends. .. well at least that is what I am hoping they are.

Day 26 in Worm World

Mmmm bad night last night.  Dyspepsia has been more pronounced in last couple of days .. last night I took a second dose of a PPI (to reduce acid build up in stomach) something I haven't needed to do for some time.  I also took 3 bicarb soda capsules to calm things down abit.  I couldn't sleep for hours and consequently very tired today.  System seemed on overdrive .. this does happen in the second cycle of the month (after day 14) for one night for some reason .. but this was a particularly horrid experience .. the hookworms must be stirring things up.  It seems they intensify symptoms.

My face is also more reactive than usual ..  with lumpy sore red cheeks despite the use of low dose cortizone cream.  Oh joy.

Day 22 Fatigue

The time is measured in terms of milestones in hookworm world.  Day 22 represents the third day of fatigue.  Noding off in lectures, nearly falling off my chair .. not a good look.   A desire to lie down and close my eyes is very stong when I really need to be reading for upcoming deadlines.  When is the best time to start worm therapy?  ...  Today the fatigue was overwhelming particularly after lunch ... I spent half the day in bed today dozing and sleeping.  I did take 6 months of long service leave this year with the intention of getting my health sorted .. taking the plunge with worm therapy was late in this period .. back to work in 2 weeks .. interesting times ...

Itchy eyes ..  another symptom ..  and incredible irritability ... shorter fuse than usual .. I am almost scaring myself... fortunately .. both these experiences seem to have settled down now.

Day 14

Sometimes it is difficult to tell if the symptoms I have are related to food intolerance, lupus, hormones or hashimotos.  I used to be able to control my symptoms with diet alone (and thyroxin).  There is a link between food intolerance and autoimmune disease and my doctor tells me that it is now recognised that there is a link between lupus and food intolerance. 

The worst symptom I have is the dyspepsia or (GERD).  It has become worse over the last year or so that I now take medication for it.  If I have a weak moment and eat something nice this is when the symptoms become much worse to the point I cannot function.  Last week I had fresh white fish (allowed) but it was cooked on a BBQ plate which may have been the culprit .. or perhaps the fish wasn't fresh enough and the amines had built up in it.  I suffered for two days with fatigue, weakness, nausea and very uncomfortable dyspepsia. 

A couple of new symptoms have manifested over the past couple of days.  Even though I feel a bit sick and have lower abdominal pain these are symptoms that are most welcome!  I am sure the little soldiers are gaining a foothold so to speak.  Lets hope they are persistent in their quest.

Waiting for maturity.

It will take time for the worms to develop and to start to take their first blood meal.  I am impatient. The side effects I am hoping for will probably occur at the 2 -3 week period. (Garin, Wormtherapy.com). Then there is the wait to see what changes or improvements this therapy may bring... from 3 months after innoculation.

The effects I am having now are the ongoing symptoms of the disease and its interaction with body systems under stress.  I have read that lupus can become more pronounced with menopause and other ongoing monthly hormonal changes. Yes symptoms are more pronounced now with monthly hormonal changes ..   Roll on menopause!

Holidaying with worms.

It has been 4 days since my innoculation with hookworm.  The itching skin at site of innoculation and the redness has all but gone.  I am anxious that I am not having side effects, or obvious signs of infection that might indicate that I am a "responder" to this therapy.  I guess with only 20 worms on board it may not be as obvious as others who opt to start with a larger dose. 

On day two while waiting at the airport my feet suddenly started to cramp up with pain.  They have continued to be stiff and bit sore .. another symptom of lupus .. arthritis in the feet .. for one who loves walking this is so not fair!  I am hoping that the hookworm are creating an environment for this increased autoimmune activity .. until my immune system starts to fight them instead of me!  Is this a sign? .. from the inner team?

I am continuing with my very restricted diet (for 5 years now) and hoping for the best.  I haven't had to take a tablet for GERD today .. but this might just be the way I manage it.  Somedays I take 20mg of pariet, others 40mg, and some days none .. this may just be one of those days .. I shall wait and see.

Preparing the dose.

So near and yet so far!

The parcel arrived yesterday and as I didn't hear the door .. it was taken away and a parcel pickup note left.  I rushed to the post office and was told the parcel was now in the depot at a nearby town and could be picked up tomorrow  .. from the local post office fortunately. 

Meanwhile ... I am on a course of antibiotics ... not a good way to start the therapy, although WormTherapy tells me that the hookworm tolerates antibiotics well.  I was going to wait until finishing the course, as suggested, however it is cutting it a bit fine in the 10 day window in the life of a test tube larvae. .. given the 10 days began last week.  I will start them tomorrow. .. there will be a two day crossover.

I am using cortisone cream on my face to settle down the lupus rash, 40mg of pariet a day for stomach (dyspepsia in my case is a symptom of lupus).  100 micrograms of thyroxin for Hashimoto's, Elimination diet for other symptoms.  Yoga to get the internal muscles moving to improve symptoms. 

Thursday is the day!  I am very curious, and hopeful.

I am waiting for my 20 worms to arrive.

It has been a couple of years since I heard about hookworm for the treatment immune system dysfunction, and since then I have been researching. Finally I have taken the plunge after getting a formal diagnosis of lupus.

I have suffered from food intolerance for many years and follow the Royal Prince Alfred Hospital elimination diet with further modifications.  Being salicylate, amine, preservative, colour and flavour intolerant and highly sensitive to any deviation I am hopeful that hookworm therapy will be a positive step.  I cannot tolerate gluten, grains, processed grains/seeds.  Rice is the only exception.  Symptoms of fatigue, IBS, depression, mouth ulcers and worsening of lupus rash, dyspepsia and other symptoms all which take days, sometimes weeks to clear are on my list to cross off, or at least improve.  Symptoms can flair up with hormone changes.  I also have hashimotos disease and have recently increased thyroxin to 100 micrograms per day which has taken the edge of the dyspepsia. 

I just hope I get some relief from my symptoms so that I can eat and enjoy good food .. not just steamed potato, beans, choko and swede .. celery and lettuce.  I don't get invited to dinner, and if I do on the odd occasion I bring my own.  What a joy it would be to share a meal with friends .. or go out on a whim for dinner, or eat an apple. 

Life's simple pleasures.