Hi this is a page about my journey from recovering from Chronic Illness.
I have had sleep problems for a long time – since 2005 at least or earlier. It started as mild noise sensitivity when falling asleep. But the real problems started in university before exams as insomnia. It then became ongoing unrefreshing sleep, then trouble falling asleep. And then mild digestive problems and fatigue started. And then the skin problems – lichen planus pigmentosus (which thankfully have gone!). And then I burnt out at work. Twice. Along the way, a severe sinus infection. By then I had been diagnosed with IBS which worsened. On top of that, Chronic Fatigue Syndrome. As well as a whole host of other symptoms apart from the debilitating fatigue including dizziness, balance issues, bloating, chronic belching, severe PMS, hand pain (both hands!), anxiety and then subsequent depression from being unwell over the years. So … it’s been difficult. And it’s nice to share it with you. I’ll focus less on the issues, and more on the treatment.
April 2017 – Dr. Rashmi Cabena, Melbourne
I saw Dr. Rashmi Cabena around 3 times and had phone appointments about 3 times. She was very nice. She diagnosed me with Chronic Inflammatory Response Syndrome or CIRS which she herself apparently has. It’s also known as biotoxin or mould illness. This was based on symptoms and expensive Quest Mould tests that got sent to the US. The diagnosis was both overwhelming and somewhat positive. The overwhelming part was understanding the problem, and the treatment, which is a 14 step Schoemacker treatment. However, it hasn’t been clear cut – as the Quest mould results support the diagnosis in a half hearted way. I’ve still got the Neuroquant MRI (a volumetric MRI which also gets sent to the USA) to do. Dr. Rashmi gave some supplements and medications which worked well, and some that didn’t and gave me terrible side effects. I continued treatment over the phone in Sydney, but I hadn’t started her main protocol (Cholestyramine) yet. There were a lot of supplements!
At this point, I also connected with Dr. Sandeep Gupta who Dr. Rashmi told me about, a mould illness survivor who also created the Mold Illness Made Simple course.
Aug 2017 – Dr. Michael Beilby
I moved from Melbourne to Sydney due to falling sick and being bedridden. I fell far more unwell in winter and do far better in summer. So the Melbourne weather was a terrible bummer. I decided to give Dr. Beilby a call, as an acquaintance I recommended him. Furthermore, betterhealthguy.com also managed to be diagnosed correct via bioresonance. I wanted to know if I really had CIRS. Dr. Beilby has a unique diagnostics bioresonance machines – a Listen machine and Cyberscan. I was diagnosed with everything – overgrowth of mould and candida, especially in the spleen and gut, certain bacterias, a tapeworm and heavy metal toxicity (gallium, arsenic, steel). He said because of my MTHFR genes I didn’t detox heavy metals well. He gave me homeopathic medicines and Toxaprevent to bind the heavy metals out of the body, and told me to increase my iodine intake. He also did a ‘treatment’. I’m still unsure of what that is! He said I’d feel doubly better in 2 months!
I started with just the Toxaprevent to see if I could tolerate it. And got side effects! As usual! Yay! Not. After speaking with the kind people at toxaprevent.co.uk who explained the effects I lowered the dose to just half a sachet in the morning, and then built up to 1 sachet which I could tolerate.
Sep 2017 – Dr. Michael Beilby
I noticed something positive – my periods looked normal. Menstrual blood should be a bright cherry red, and mine had been brownish for so long along with clots. But this time, it looked right. Due to magnesium? Toxaprevent?
I finally started the homeopathic medicines. I started to have a lot of trouble sleeping, even with all the sleeping pills I took.
I saw Dr. Beilby again who said my mould and candida levels had halved but my indium was high. I had just started the homeopathics so he attributed the improvement to the previous treatment. He treated me a bit via his machines and gave me an additional medicine for indium and my sleep issues.
I continued to have trouble sleeping (not too severe, but awful when ongoing) and got severe nausea and then took only the morning dose of the homeopathics and started to sleep better. It could be a coincidence. The nausea also has gone away the next day. I did try 2 or 3 times to take a higher dose. The sleep deprivation certainly left it’s toll on me. I may try just the additional doses of the additional medicine for sleep and indium. I am unfortunately getting loose stools so I hope it’s just my system detoxing and getting better.
I hired a home carer as well to keep my company for a few hours during the day, and so far she’s very good. I feel much better emotionally.
I had to stop the homeopathic medicines completely because I continued to have sleep problems and a LOT of very loose stools. I also started to get closer to my periods, a pretty horrid time for me. In the end I was going to the toilet 3 times a day, then one day I went 5 times a day and stopped. I figured it’s probably not a good idea to have loose stools for so long (about 1.5-2 weeks), and I don’t want to stress my already stressed system. Within a day of stopping the side effects of loose stools lessened significantly. I have emailed Dr. Beilby, who said to go see him, avoid Indium (from laptops and TVs – or to use them only wrapped in plastic). He said he would really work on my sleep. I may restart the homeopathic medicines at an even lower dose of 2 drops a day.
I also connected with a hypnotherapist from North Shore and City Hypnotherapy. She mentioned she suspects she herself has CIRS and has completely recovered with diatomaceous earth and thyroid medication. Although her thyroid blood results are normal. I may be in a similar boat, as I also have many symptoms related with hypothyroidism. I also know of another acquaintance who recovered from CFS after being treated for her thyroid with diet changes and daily temperature measurement.
I do have high thyroid antibodies. There is also an alternative test for thyroid which claims 98.5% accuracy – Thyroflex which I will try to see if it uncovers anything.
My extended family in India have found someone who is apparently able to clear the bad ‘grah’. He seems like a miracle man for my Uncles who have had some serious issue or another completely resolve. I am so tempted to go there, but travelling overseas at this point is very very difficult for me. It seems he will not talk over video chat! In the mean while I got a sade saati yantra in my home. I don’t know but I seem to be winning at cards more now that the yantra is there. Perhaps it will help! 😀
I continue to do 45 mins of evening restorative yoga and meditation daily, and 15 mins of morning anulom vilom pranayaam. I also practice sleep hygiene.
Sigh – so much testing left: Thyroflex, Neuroquant and to see Dr. Beilby again!
In the last week of September I started Biological Therapies B dose (not B dose forte) intramuscular injections 3 times a week, which in the past after 6 injections probably has been very beneficial for me. I derive no improvement from daily subcutaneous B12 (cyanocobalamin) shots or oral vitamin B complexes. I notice an improvement with the B injections almost straight away. Within an hour I feel a sense of calm. It’s almost like my body sighs with relief. It doesn’t last very long yet. I luckily found sublingual B complex (without B1 however!) and will try them once I’m out of the injections as the injections are very inconvenient and quite painful.
I’ve been having a bit of trouble sleeping recently. I was tossing and turning – it looks like restless legs, possibly from my iron deficiency from my time of the month. Plus I had a stomach ache from eating half a bag of corn chips! However, nothing a wheat bag and Himalaya Himcospaz didn’t solve. Anyway, I’m sure I’ll be fine with some iron and some healthier and lighter eating!
I restarted DNRS with a buddy. This has been really great.
I’m considering whether to start low dose homeopathic medicines. I’ve noticed some improvements over the last 2 months – asides from the menstrual blood, less PMS, my muscles are more relaxed and my blood sugar levels seem more stable. I don’t feel like I need to eat quickly. I don’t know whether to attribute these changes to the magnesium, toxaprevent or the homeopathic treatment.
The magnesium I recently found is Nature’s Way Amino Acid Chelate. It is the first magnesium I’ve found to be really great and I felt a difference pretty much straight away. I’ve tried so many others. I even had better sleep after taking it at night.
After speaking to the Toxaprevent folks regarding my chronic belching I switched to the Toxaprevent capsules – starting with just 2 in the morning. The first few days I felt so irritated and so I went down to 1 capsule. I’d feel irritated after taking it! Sigh. Perhaps it will pass.
I continued to have loose stools and reduced magnesium to just one 200mg capsule. And the loose stools stopped. Too many changes though, as I also stopped the Toxaprevent sachet and switched to capsule. So not sure what it is from!
I’ve decided to continue with DNRS, magnesium (fine tuning to the right dose) and toxaprevent (sachet or capsules) and not do the homeopathic medicines yet, but to restart them later when I feel ready. I like doing one thing at a time.
DNRS is so powerful for me, and I’m hoping that this time around, I will have the motivation to keep on doing it. I’ve found a great buddy, so hopefully it will! Mariah’s health journey blog has really been so helpful.
I started to get a jittery / irritated feeling. Initially I attributed it to Toxaprevent capsules. But now I’m thinking it’s the B dose injections. I decided to reduce the dose from 3 times a week to once a week, or maybe even stop completely. This is odd, because when I took the B dose injections last year in May 3-4 times a week, I didn’t get the jittery feeling.
Also my Uncle called and the astrologer from India has given me an ‘upay’ to do everyday which works very quickly (within 2-3 days). He said it would enable me to fly to India to finish the cure. I started it and felt better … perhaps it will work. This would be the biggest win and I hope it happens!
I also started Bioceuticals Paracea Forte (1 cap, 2x) to kill the parasite in my body. I got a bit of a sharp pain for a short time in the day then a lot of gas at night. Gas makes my sleep really bad. So I stopped it – perhaps I will take it later.
Another good news is the Thorne Biogest digestive enzymes (1 cap with each meal) I’ve been taking for maybe 2 weeks now. I stopped having stomach aches and feel less gas. I’m at half the recommended dose and will increase soon. This is really positive for me as most enzymes don’t suit me. I guess it’s the plant based ones.
Hmmm … so I discontinued the DNRS (being lazy again!). And I figured out the cause of my jitteriness – the Thorne Biogest enzymes :(.
I also started the Upay (mung, urad+sarso, haldi+perfume x3, shahad bath x2) at the end of October and guess what it works! For one week I felt much calmer and my gas halved. I was sleeping a lot in the daytime. I started to walk normally. But then my periods came and it got really stuffed. So I asked the Swami ji what to do and he said to add koyla and chawal mishri. I didn’t get the instant improvement from koyla like the swamiji said and got mixed results. The best time it seems to do the koyla is in the morning. Anyway, I’ve found a big improvement from the upay, so I’m going to continue!
Another thing I tried is food grade diatomaceous earth from superchargedfood.com. I ditched Toxaprevent to switch to this. I only took 1/2 tsp each morning for 2 days and drank the 2L of water. I got a lot of gas, bloating and constipation pretty much straight away. On the second night I had a lot of trouble sleeping with weird brain jerks and had to take sleeping pills. BUT … I am not sure but I do feel happier. I need to know if it’s from the DE, or something else! Let’s see. Lee Holmes from supercharged food has so far been incredibly helpful. I’m waiting for her response on the negative side effects.
The problem is doing too many things at once. I’m at a crossroads as to whether to do the Upay or the homeopathic medicine. I suppose I could do an ultra low dose of the homeopathic medicine. Hmmmmm :). At this point I would love the loose stools the homeopathic medicine gives as I feel pretty blocked up after the DE!
Mycotox house inspection
The other news is that Vince Neil from Mycotox came and inspected our house. His conclusion was that the house itself is fine and the toxins are coming from our old furniture and to get rid of the sofas, clean the timber furniture and house walls, and get an Air Oasis air purifier. He also focused quite a bit on VOCs. The purifiers he rec ommended are incredibly expensive. We bought a smaller Air Oasis for the bedroom to see whether it’s good. I haven’t tried it yet but it sure has a funny smell!
I ended up crashing for days afterwards. It was difficult, and I’ve realised I need to take more care about my energy levels. I think right now the max time I can talk to someone new to me is about 20 mins before needing to take a break.
Update: After about a week of use I didn’t notice anything about the small Air Oasis air purifier in terms of my sleep or any symptoms. It does sure seem like a waste of $800 of money.
I took a bit of break from my morning Pranayama to do the Upay and I realised how important it is to keep going. Perhaps if I hadn’t stopped the post period blues would have not been so bad!
After some more experimentation I decided to give up on Dr. Beilby as the side effects were too strong for me to handle.
I discovered flower essences – Bach and Bush flower. I found the results amazing – within 2-3 days, but also could not tolerate the side effects.
I then consulted a homeopath in the UK and was prescribed some homeopathic medicine – Lycopodium 30C and felt an improvement in terms of anxiety. However, I would get severely constipated, and jittery. So I was told to stop by the homeopath after 7 doses spaced apart. I felt better for an entire month and restarted the flower essences and was able to tolerate them better. But silly me, tried to switch to a better version of the flower essences and stopped the ones that were already working. However, by this time I was not able to tolerate the side effects of the “better” flower essences. So it was a lesson learnt – if something works, stick to it like glue especially if it works well.
I also was prescribed Gelsenium 30C and after only one dose, got bad hypnic jerks at night for a week. It was quite terrible.
I ended up seeing my old doctor in Double Bay, Dr. Daniel Hameiri a CFS specialist who I had good results the first time I saw him back in 2016, possibly due to doing an intensive intravenous vitamin C and B program.
I saw him after having a lot of trouble sleeping – getting continuous explosive head syndrome.
With his treatment that has thankfully mostly gone.
First he tried Avanza and unfortunately I got restless less syndrome. However, other than that I really liked the feeling of calm on it. He then prescribed me Rivotril. To improve my sleep he tried various things like high dose melatonin 10mg, redormin. I explained to him that melatonin makes me wake up in the middle of the night and that is why I used to take the time release one, but that makes me really irritated (Circadin, Life extension 6 hour time release) in the day which is why I stopped. As a side note – I found that Kirkman Labs makes a 4 hour sustained release or time release melatonin. This may solve the problem I had with irritation.
Dr. Hameiri suggested I take redormin + high dose melatonin but this gave me explosive head syndrome. So I switched back to just melatonin. I wonder if just Redormin (without melatonin) is also something I can tolerate. Perhaps, just remotiv on it’s own would be enough.
Dr Hameiri has put me on a regimen of 10 supplements and 3 intravenous vitamin treatments a week and things look a bit better. Next month, when his office reopens I will restart the 4 intravenous treatments I had done the first time, and maybe a supplement called AdreenoBoost, because I think that was a major game changer for me.
He has also prescribed Mutaflor … to improve my digestion – especially the bloating. He put me on a low dose of just one capsule a day. The first day I noticed increased bowel movements. After that I started to get badly constipated. This is strange because constipation is not a side effect of Mutaflor, so I am not sure where that’s coming from. It’s actually a treatment for constipation! A glass of prune juice and 3 triphala tablets did the trick. I wonder if the constipation is coming from the high dose melatonin, as they are compounded and sure do smell funny! Today I will try the Life extension 3mg 6 hour time release melatonin I have sitting at home … and see if I get that day time irritation still. I’m sure I’ll sleep well on them. I also feel better on 3 caps of Remotiv a day, instead of the usual 2.
I’ve taken Mutaflor for 6 days now, just one cap a day. I’m taking the 3 triphala tablets as a laxative. I don’t expect any improvements until around the 10-14 days mark.
And on Christmas day, finally summer arrived.