The symptoms started in me after a flight to NZ, I felt so unwell there and horrid on my return!!! Symptoms are various and bad. Very similar to Lyme and parasites. So many on Lyme forums complain of being sick after travelling somewhere on aircraft, this makes me really think!
Still on the same merry-go-round. I’ve put many hours and a fortune into this and it would seem there are a billion different permutations as to whats going on here!
I recently had a 23andme.com genetic test performed and then put the results through geneticgenie and mthfrsupport.com reporting process, it quite neatly shows that all of my methylation and detox pathway gene’s are turned off by the bugs that have been through me or are still in me (not sure what to think but I feel they are still in me). Its nice to know this as it tells me not to try too much killing or detoxing as my body cannot handle the ramifications of these harsh actions currently. My accupuncturist/naturopath says that my immune system and nervous system are just ‘shot to pieces’ by the lifestyle stressors over 20 years, then serious infection of the gut hurts even further as that is where the majority of your immune and nervous system are housed. So now the tricky part, HOW THE HELL DO YOU TREAT THAT? I’d love to know.
Seems the general consensus in the wider CFS/ME, Chronic infection (lyme etc.) and digestive health circles is help the body heal by ways of minimising stress, repopulating the enteric microbial balance (microbiome) of the gut and focusing on the positives in life (even if you feel you are on deaths door (sounds much easier than they point out!!)). The autonomic nervous system is very sensitive to all it comes into contact with and the thought of it not being able to recover from an infection is almost on par with Post Traumatic Stress Disorder, infection is still thought to exist in the body so weakens continually and then renders you susceptible to further infections over and over…….
Ok, I’ve rambled on enough…. but thats where I’m at, at the moment. LOVE YOURSELF!!!!!!!
I’ve been unwell for over 3 years now and if anyone reading this is at the start of an unknown health crisis, then I hope this may speed up your path to receovery.
It seems more and more research is pointing to gut infection or inbalance being the root of many health issues these days. Testing for me has shwon some very bizarre gut flora and pathogens along the way but it has been found too late to allow easy treatment.
Here are a few recent articles I feel are very important to read completely:
Well I think it is safe to say, the rectal infusion of antibiotics has not been a ‘silver bullet’ as I still feel very similar to how I felt prior to the procedure 2 weeks ago.
After visiting my gastroenterologist this week and him verifying that my condition is still yet to improve, he has now suggested I get a fecal microbiota transplantation (FMT), to replenish the good bacteria in my colon and potentially small intestine to crowd out the bad bacteria’s that seem to have set up shop.
When I had a Metametrix test 2 years ago it showed severe dysbiosis and today my symptoms are now different.
I’ve taken so many courses of antibiotics over the past two years so its now assumed the bacteria’s are now resistant which FMT may be able to do something about.
For those playing at home, I had a colonic infusion of Furazolidone 1500 mg, Iodoquinol 6500 mg, Paromomycin 7500 mg, treatment this morning with my gastroenterologist for a persistent dientamoeba fragilis gut infection.
Now 10 days of 1500mg Paromomycin. Feeling tired and a bit crampy.
Well its been a few months since I last posted here. The reason for the pause in posting is due to a number of reasons, not knowing what is going on, not having the energy or mental ability to piece something together and an attempt to remove myself from perpetually looking at web based material to try and get a grasp on feeling healthy again.
By posting here now I’m not saying I’ve got anywhere near better, in fact I’ve regressed substantially from where I was in December. I put the regression down to actually feeling better for a few months and thinking the worst was behind me and by worst, I mean it!
For me I was feeling like I could drive around and socialise much more, without the internal feeling of fatigue telling me not to go too far from home or to stay out too long. I was able to work more, talk more, laugh more and then it hit me, one morning in early May I woke up feeling like a truck had run over me. I was tingling all over and feeling super brain fogged, plus it was like my stomach had stopped processing food as it was all jammed up.
This went on for a few weeks so I thought I’d see what is going on and looked within myself, to determine if I’d felt this way before and then it hit me, I felt this way when I was diagnosed with a parasite by MetaMetrix back June 2011. I received a Parasite Present Taxonomy Unavailable (PPTU) but it was enough for my gastro Dr to treat me then and I felt pretty good using the CDD.com.au triple therapy for blasto. in that month. Due to the PPTU last time and then symptoms being similar this time, I thought I better use a better lab to determine what is the actual beast to deal with as PPTU is too loose!
I looked into the pptu.lefora.com site and noticed a number of people had used parawellnessresearch.com with great result. So I sent a FedEx stool and urine sample off in fixative to Colorado for assessment. Result came back:
“The analysis of your urine and stool revealed the following results:
I did not detect any parasites in the microscopic examination of urine.
I did detect parasites in the microscopic examination of stool:
Dientamoeba fragilis trophozoites (protozoa) – many Iodamoeba butschii cysts (protozoa) – few
These organisms are considered pathogenic in that they can cause or contribute to tissue inflammation and destruction. It is best practice to work on eliminating them.”
So for all this time I’ve been harbouring an amoeba in my system, no wonder I’ve been feeling so unwell for so long!!!!!
Whilst waiting for the results though my gastro suggested I try a large dose of Albendazole and then a course of Doxycycline, unfortunately it made my symptoms 10 times worse and I though I was going to have to be put into a mental hospital. I’m thinking it must have raised my fungi levels to a higher level and also caused a huge die-off event, to compensate for the loss of beneficial bacterial due to these drugs I thought I’d give prescript assist probiotic a try (as it had a great write up), it made the symptoms 20 times worse…… aaarrrggghhhh! Now I’ve learnt that Dientamoeba Fragilis (DF) lives on bacteria and heavy metals etc. they love it, so I was effectively feeding this already large colony of DF and setting myself up for more pain.
“Parasites also survive by by ingesting bacteria and fungi, and many people – but not all – experience an increase in symptoms whilst taking probiotics. This anomaly could be explained because:
“Axenisation is successful with some cultures but fails in other because some B.hominis strains seem to depend on bacterial support.” (B.hominis – Past and Future. Zierdt. 1991)” http://www.badbugs.org/diet.htm
From here I’m not exactly sure what to do to treat this as I’ve tried the first and second line treatment for this infection without much success. The third line is a visit to the CDD.com.au operation in Sydney, Australia and have a rectal infusion of antiparasitic medications.
I’m now just trying to rebuild a little strength and composing myself for the next move, by gentle energy medicine and accupuncture, as my body is fried.
For the past few years I’ve tried a number of things that were all put up as solutions to rectifying the health challenge’s I’ve been facing. Sounds sad to think that I haven’t been chasing my dreams and aspirations, instead following blog’s, post’s and medical articles/papers, searching for help that no trained medical practioners could offer me.
Each attempt I’ve tried to supplement or detoxify along the way has been met with symptoms best left out of my memory! Crippling fatigue, ache’s, pain’s, vision loss, vertigo, numbness, suicidal thoughts, the list goes on, SCARY!
Early on in this journey I was advised to have my homocysteine level checked, if it was high, it might explain something, it wasn’t so the naturopath left it there. Little did I know that she was looking to then perform an MTHFR (Methylenetetrahydrofolate reductase) test, to check to see if I have a genetic mutation, predisposing me to issues known to occur in MTHFR gene carriers.
Well is been a while since posting. I’m still not progressing to the levels of health I would’ve expected after attempting a number of treatment modalities.
I have seen a number of practitioners that specialise in different areas.
Ozone and UBI/UVI (Ultra viilet blood irradiation)
The practitioner was an MD with an interest in cancer and chronic illness. I’d read a lot about ultra violet options and combining it with ozone. So I went for a treatment which took about two hours, from the start of the conversation to the end of the transfusion (here is a great explaination of the procedure http://www.youtube.com/watch?v=Sr3ti1p0uMQ&feature=plcp). I felt no noticable benefit after one session, they do say you need more. Ozone was added to the transfusion and I was injected with ozone also, all in an attempt to raise my immune system.
PEMF – Pulsed Electro Magnetic Field therapy
There are many devices, but apparently the clinical model is the PMT-100, sold by Dr Gordon via pemf.us. Here is an idea of what it looks like https://www.youtube.com/watch?v=4r2HrwRfsYM. I went along to the practitioner and had a health assesment. Then started with treatment of the device. It is a very unusual sensation, something that I have not felt in my life. A tingling, vibrating, pulsing and relaxing feeling occured (as long as the intensity isn’t to high). If an area is affected in some way by illness or weakness, it apparently starts to pulsate. For me, my intestines, liver, spleen and spine seemed to bounce around internally for a number of minutes. At the end of the sessions (I’ve had 4 sessions, 9 minutes, 15 minutes, 18 minutes, 21 minutes) I have an ‘up’ feeling but the next day have a herx feeling, all day, a laggy depressed feeling. Seems to go away bu the next day. I take the herx and a sign of it working but others may see it as an impact to the fine electrical circuit that is the human body.
Herbs have always turned me into a mental case or a zombie, once again it would seem they are working to put me into this state. I’ve started on Samento (Cats claw) and Burdock. These herbs are well known in Lyme/natural circles for raising the immune system and killing bacteria. For me at this stage, I’m feeling they are killing something but I just cannot detox the toxins being generated.
Diflucan – Antifungal
Diflucan (50mg, 100mg or 200mg) is a pharmacuetical product known to inhibit the 2c9 p450 cytochrome enzyme and also to kill off fungus, yeast, mold and candida on contact. For me, Diflucan has made me feel strength, stability and mental clarity. This is something I’ve been striving for over the past few years, which indicates to me that I have either an issue with fungus yeast mold (MetaMetrix seem to think so) or I have an issue with the CYP2C9 enzyme and it needs to be inhibited. I’m studying this area for a sign.
MTHFR - methylenetetrahydrofolate reductase
MTHFR is a methylation genotype, that affects the liver and its ability to detoxify many substances and cause serious illness, infertility and the list goes on and on. http://www.mthfrsupport.com/ is a site which spells out a lot. The mthfrsupport group on facebook is really helpful. Why am I talking about MTHFR? because I have a feeling its the reason why the items I’ve written about struggling with above are directly related to the reason why I am struggling. If the liver pathways are blocked and I’m trying to kill off ‘X’, then what ever ‘X’ is will be recirculated around my body and never be able to be removed. There is a test from Dr Amy Yasko and 23andme.com to check the MTHFR status. I intend to order this test to see what my genetic mutation may be. L-methylfolate-Metafolin and Phosphatidyl Choline (not for SOY intolerant crew) are supposed to be very helpful to the MTHFR condition.
I hope you find some of this information helpful. I’ve gone through agony, fear and pleasure to bring you this information. My lyme treatment with Tetracycline Hydrochloride has also stopped after 3 1/2 months. I was taking 1500mg a day and didn’t seem to be assisting in symptom reduction.
When I initially sampled Siberian Pine nut oil 2 months ago, I noticed subtle differences that were not realised to be associated with its use at the time. Fast forward to now and the fact that I am taking it again, I’m noticing the same subtle differences again.
One obvious feeling I get is an overall calm, that isn’t constant, it comes in waves, mostly just after taking it. The other feeling that comes in similar waves is a feeling of content. It’s a nice feeling, to feel at ease and calm, even if only for periods of time.
This calm feeling seems to come from my gut, deep inside my gut, which makes sense as I’m sure my gut is in turmoil from parasites and a myriad of infections. Lyme, mercury, Leaky gut, IBS and IBD coupled with a hiatus / hiatal hernia, are recipes for complete and utter nervous system demise and mitochondrial dysfunction leading to CFS etc.
I’ll keep up my use of Siberian Pine nut oil and see where it takes me.
Over the past years of being chronically unwell, I’ve tended to look at any product that has been written up or suggested to assist in the areas of detoxification, nutrition, digestion and vitality. Too often I have found the products are not tolerated well and subsequently leave me feeling worse.
Due to the nature of my condition centring around the digestive tract and nervous system, if a supplement or product affects me, it can knock me out of action for days, to weeks.
Obviously this has rendered me to be very cautious of what I even consider taking now, so I was very surprised to find Siberian Pine Nut Oil to be well tolerated.
When you read the good things about that are contained within Siberian Pine Nut Oil and the benefits it provides the body, you could be left thinking it is all a little too good to be true. From what I have found so far, it is well tolerated and seems to provide the suggested benefits. I’ve only taken Siberian Pine Nut Oil for a few days, so I cannot 100% endorse the product fully.
Here are a few places that you may find helpful to learn more about Siberian Pine Nut Oil:
“Extra virgin Siberian pine nut oil is a rich source of natural antioxidants, such as vitamin E, carotenoids (including beta-carotene, used by our bodies to produce vitamin A), niacin (vitamin PP), magnesium, copper, iron, zinc, manganese, and sulfur-containing amino acids. Lately, the problems of lipid peroxidation and the antioxidant status of our bodies have become a focus of major attention. Many metabolic and other physiological processes in the human body lead to the production of so-called “free radicals”. These very active, chemically aggressive molecules take part in the accumulation and biotransformation of energy, detoxify and neutralize certain harmful substances, and participate in the functioning of the immune system.” from http://www.siberiantigernaturals.com
I’ll be updating my progress as I go. At the moment I’m using Siberian Pine Nut Oil from theotheroption.co.nz, as they seem to have the best price and from what I can sense so far, taste also.