82 replies to this topic

[odspot]

I've had symptoms over that past year that seem to be connected to some kind of chronic infection: 'adrenal fatigue' (hypoglycemia, inability to tolerate any activity, stress etc.), thyroid issues, dysautonomia/POTS etc.

 

I've seen a lot of doctors/specialists: most were a waste of money, but good for ruling stuff out at least. With nothing left to lose, I decided to see a chronic fatigue specialist at a reputable clinic here that supposedly works in tandem with European doctors.
 

Anyway, she seemed quite intuitively knowledgeable, i.e. picking up on stuff and making suggestions that no one else had mentioned up until this point, but I also don't know how much to believe. 

So far, prior to seeing her, I have tested negative for Chlamydia Pneumoniae, Mycoplasma, EBV, Herpes, H. Pylori etc. I did a Lyme & co. panel that was all negative too.

I have low Vit D, low B12, anemia of chronic disease, high RT3, low zinc, slightly elevated homocysteine and high monocytes.

Initially, she thought Lyme based on the monocytes and the fact that I scored high on the Horowitz questionnaire, but she retracted that later on: I can't specifically recall why .. I think because my neck glands felt okay to her, and I don't have any joint pain or night sweats. She said the Horowitz questionnaire can cover any multi-system infection. She then said she thinks my primary infectious issue is Candida, backed up by the fact that I have visible bloating and have developed fungal infections on my feet and red spots on my arms etc.

She said we could test for it, but it would cost; I've read a lot of conflicting info on how legitimate Candida overgrowth in the gut is .. She also gave me a form for a comprehensive stool analysis to check for dysbiosis, but it's $350 and not something I can afford right now.

She thinks I have copper overload, based on my low Zinc and psychiatric symptoms (a lot of revved up energy, nerviness, paranoid, anger etc.). 

Given that I can't tolerate any supplements without crashing -- including probiotics, Vit D, B12 etc. --, she wants me to start with coffee enemas to improve my immunity and relieve the copper burden. She seemed pretty confident that doing 2-3 a week for a few weeks will allow me to then tolerate supplements more effectively. I've read the gut screening is a core part of the clinic's protocol (they prescribe antibiotics based on the results), so suppose I'll have to find the money for that at some point. She also mentioned anti-fungals to treat the Candida.

 

Anyway, I suppose it's possible I might still have Lyme, given the tests aren't all that accurate, but is it a stretch to believe it's Candida? I feel so physically and emotionally broken at this point that I will happily funnel coffee into my *ss, if it  means any kind of improvement .. but I also feel like getting on top of my health issues at this point is gonna be pretty impossible. 

Edited by odspot, 23 August 2016 - 05:53 PM.

[musicman4534]

I would say it sounds like lyme, but when you say things like revved up energy, nervousness, paranoia, etc., these symptoms point toward problems with the gut. My father and one of my sister's friends have had lyme disease, and it's a very sluggish, internally and externally chronically tired feeling, whereas a lot of gut problems make you physically tired, but have different mental effects like the ones you've described.

 

There has been a lot of studies coming out lately on the importance of gut bacteria and mental/physical health. While it might not be candida specifically, it could be another infection/imbalance in the gut.

 

Look up this supplement and try it -- EpiCor. I've personally had crazy experiences with this extract (solved my weird gut problem of over a year, and then I went on to feel amazing and started having amazing dreams when I took it before bed), and I've read many other good reports of it here and on reddit. u/MrYouAreSoDumb of Ceretropic shared his story on it as well... crazy gut problem from India wouldn't go away, EpiCor solved it, been sick only once in past three years since he started taking it daily. I still take it to this day as well.

 

Take one capsule before bed (because this is when the body does it's best healing), and that's it. One bottle lasts 2 months, and that should be more than enough to clear your problem up if it's microbiome-related. The thing with EpiCor is that along with all its benefits it also creates a beneficial environment in the gut for beneficial bacteria to thrive, so it's a two-for-one.

 

You might also look into GHK peptide! It's great for the immune system, healing, and several other things.

 

Also, have you tried cutting things out of your diet like wheat, dairy, fructose (yes, you can be allergic to oranges), etc.?

 

P.P.S. I don't care what you say, you should be taking AT LEAST Vitamin D. No buts. Zinc gluconate, magnesium glycinate, and spirulina are all very easy on the body and very beneficial as well. If I had to pick one I'd say spirulina, because it has zinc, magnesium, and other nutrients in it, and can also help detox heavy metals and balance other metal ions.

 

http://nootropicsdep...500mg-capsules/

https://en.wikipedia..._peptide_GHK-Cu

https://examine.com/...ents/spirulina/

 

Wishing you well,

Evan

Edited by musicman4534, 23 August 2016 - 10:19 PM.

[birthdaysuit]

Have you tested with iGeneX yet (Lyme, Babesiosis, Bartonella). I know you live in Australia but like I said everything you are experiencing symptom wise I too have experienced. It's likely a bacterial or viral infection. Prior to treatment, I too had low Vit D, low B12, an elevated  RT3 and high monocytes, which is usually seen high in cases of acute bacterial infection. In my case it was Lyme, Bartonella and Babesiosis. You need to rule out Lyme, a Lyme panel ELISA test does not cut it. It only is 15% accurate. I tested negative each time. It is vitally important to get iGeneX Lyme Test and either a co-infection test from iGeneX or Galaxy Labs. Not sure if they take blood from Australia. Lyme is largely a clinical diagnosis and many doctors in Australia will deny that you have it as they did to me. Tick-borne infections are markedly common in Australia and the surveillance data is outdated and under-reported.

 

Lyme Arthritis is a Chronic infection and manifests itself months to years after contraction. Meningitis and Neurological issues are in many cases the acute stage of Lyme if left untreated for a few months. Anxiety, depression, paranoia, derealization are all part of CNS Lyme. Antibiotcs can cause the spirochetes to retreat to the joints of a host, so relapse can happen and this is when chronic Lyme arthritis likely occurs.

 

It is possible that you have disseminated candidiasis. Do you have difficulty swallowing, nausea and/or vomit often? Hold off on the antibiotics if you are sure you have candidia becuase you don't want dybiosis. That being said, grounding a diagnosis on the absence of an explanation is extremely problematic, so it is important to get the full scope and ask for the tests. Candida can be tested for and Lyme believe it or not can cause Candida.

 

IF MANY OF YOUR SYMPTOMS are NEUROLOGICAL, please consider the fact that you may be suffering from a bacterial infection of the CNS. Candida does not produce sufficient neurotoxins that it can cause significant neurological problems. From what you told me in the past, these issues seemed fairly significant. I'm also not denying that disseminated candidiasis can cause neurological problems, just not at the extent Lyme can. I did read that "Candida impairs the liver's ability to store vitamin B12." So, there's that, but one deficiency isn't a clear cut way to diagnose.

Edited by birthdaysuit, 24 August 2016 - 02:14 AM.

[birthdaysuit]

Yes, supplement Vitamin D, magnesium and Zinc 15-20mg every other day. Try to cut out sugars and see if that helps.

[odspot]

I would say it sounds like lyme, but when you say things like revved up energy, nervousness, paranoia, etc., these symptoms point toward problems with the gut. My father and one of my sister's friends have had lyme disease, and it's a very sluggish, internally and externally chronically tired feeling, whereas a lot of gut problems make you physically tired, but have different mental effects like the ones you've described.

 

There has been a lot of studies coming out lately on the importance of gut bacteria and mental/physical health. While it might not be candida specifically, it could be another infection/imbalance in the gut.

 

Look up this supplement and try it -- EpiCor. I've personally had crazy experiences with this extract (solved my weird gut problem of over a year, and then I went on to feel amazing and started having amazing dreams when I took it before bed), and I've read many other good reports of it here and on reddit. u/MrYouAreSoDumb of Ceretropic shared his story on it as well... crazy gut problem from India wouldn't go away, EpiCor solved it, been sick only once in past three years since he started taking it daily. I still take it to this day as well.

 

Take one capsule before bed (because this is when the body does it's best healing), and that's it. One bottle lasts 2 months, and that should be more than enough to clear your problem up if it's microbiome-related. The thing with EpiCor is that along with all its benefits it also creates a beneficial environment in the gut for beneficial bacteria to thrive, so it's a two-for-one.

 

You might also look into GHK peptide! It's great for the immune system, healing, and several other things.

 

Also, have you tried cutting things out of your diet like wheat, dairy, fructose (yes, you can be allergic to oranges), etc.?

 

P.P.S. I don't care what you say, you should be taking AT LEAST Vitamin D. No buts. Zinc gluconate, magnesium glycinate, and spirulina are all very easy on the body and very beneficial as well. If I had to pick one I'd say spirulina, because it has zinc, magnesium, and other nutrients in it, and can also help detox heavy metals and balance other metal ions.

 

http://nootropicsdep...500mg-capsules/

https://en.wikipedia..._peptide_GHK-Cu

https://examine.com/...ents/spirulina/

 

Wishing you well,

Evan

 

That's interesting. I have read about Lyme causing similar psychological disturbances, but maybe they are more prominent in gut infections. As I said, the doctor I saw seemed to think it was linked to copper accumulation (which in turn seems to be linked to Candida). 

 

I tried EpiCor early into my symptoms and it made me Herx pretty badly. I also felt foggy and depressed (maybe due to Herxing?). 

 

I really can't tolerate supplements. If I take Vit D, I feel more 'hypoglycemic' (which might be a crash from immune activation), Magnesium crashes me (presumably due to lowering cortisol), Zinc as well. The doctor said to stay away from what makes me worse in the meantime and try to lighten my immune system's load via enemas.

 

As I said, the clinic does a relatively expensive gut screening ($350), but maybe it would be worth trying to get done, because I know they target antibiotic therapy according to the results.

 

My friend's mom, a retired doctor, has been insisting I see a gastroenterologist, but I don't know how helpful they would be for something like this. 

Edited by odspot, 24 August 2016 - 04:19 AM.

[odspot]

Have you tested with iGeneX yet (Lyme, Babesiosis, Bartonella). I know you live in Australia but like I said everything you are experiencing symptom wise I too have experienced. It's likely a bacterial or viral infection. Prior to treatment, I too had low Vit D, low B12, an elevated  RT3 and high monocytes, which is usually seen high in cases of acute bacterial infection. In my case it was Lyme, Bartonella and Babesiosis. You need to rule out Lyme, a Lyme panel ELISA test does not cut it. It only is 15% accurate. I tested negative each time. It is vitally important to get iGeneX Lyme Test and either a co-infection test from iGeneX or Galaxy Labs. Not sure if they take blood from Australia. Lyme is largely a clinical diagnosis and many doctors in Australia will deny that you have it as they did to me. Tick-borne infections are markedly common in Australia and the surveillance data is outdated and under-reported.

 

Lyme Arthritis is a Chronic infection and manifests itself months to years after contraction. Meningitis and Neurological issues are in many cases the acute stage of Lyme if left untreated for a few months. Anxiety, depression, paranoia, derealization are all part of CNS Lyme. Antibiotcs can cause the spirochetes to retreat to the joints of a host, so relapse can happen and this is when chronic Lyme arthritis likely occurs.

 

It is possible that you have disseminated candidiasis. Do you have difficulty swallowing, nausea and/or vomit often? Hold off on the antibiotics if you are sure you have candidia becuase you don't want dybiosis. That being said, grounding a diagnosis on the absence of an explanation is extremely problematic, so it is important to get the full scope and ask for the tests. Candida can be tested for and Lyme believe it or not can cause Candida.

 

IF MANY OF YOUR SYMPTOMS are NEUROLOGICAL, please consider the fact that you may be suffering from a bacterial infection of the CNS. Candida does not produce sufficient neurotoxins that it can cause significant neurological problems. From what you told me in the past, these issues seemed fairly significant. I'm also not denying that disseminated candidiasis can cause neurological problems, just not at the extent Lyme can. I did read that "Candida impairs the liver's ability to store vitamin B12." So, there's that, but one deficiency isn't a clear cut way to diagnose.

 

I can't afford to get any further Lyme testing done. I believe it is bacterial, and this clinic places a strong belief in Lyme being the root cause of a lot of CFS cases, but she did not seem to think it was Lyme in my case .. as I say, I can't recall why exactly. Regardless, she said she wouldn't use any medication (anti-fungal or antibiotics etc.) until I saw her again in 2 months, and to just focus on detoxing for now. 

 

I don't have trouble swallowing, but have frequent nausea -- I gag and dry-heave pretty much every time I eat. 

 

Do you have links to any legitimate reviews on disseminated candidasis? I really can't find much on it. 

[odspot]

This is the test the doctor wants done:

 

http://www.bioscreen...58/Default.aspx

[birthdaysuit]

By chance, do you work as a veterinary, or a farmer, or kill and cull Kangaroos? Anything to do with animals for that matter? I know Q-fever is not that common around the world but it is fairly common in Australia where it was first discovered in Brisbane. Most infected exhibit zero symptoms but a compromised immune system and if left untreated for years symptoms can manifest and cause serious problems. Flu-like problems are the acute start to infection and they slowly go away. Followed by bouts of nausea, dry heaving, malaise, profuse sweating, loss of appetite, cough, severe gastrointestinal problems, and diarrhea. It takes one to four years of antibiotics to treat infection. I find this infection very interesting. 

 

Start detoxing though and see if you feel better. For me it took a few years to figure out what I had, I actually had suicidal thoughts pop into my head. IV antibiotics riddled of all of my neurological symptoms. I just hope you find out what you're suffering from and get the appropriate treatment.

 

 

Edited by birthdaysuit, 24 August 2016 - 03:40 PM.

[odspot]

By chance, do you work as a veterinary, or a farmer, or kill and cull Kangaroos? Anything to do with animals for that matter? I know Q-fever is not that common around the world but it is fairly common in Australia where it was first discovered in Brisbane. Most infected exhibit zero symptoms but a compromised immune system and if left untreated for years symptoms can manifest and cause serious problems. Flu-like problems are the acute start to infection and they slowly go away. Followed by bouts of nausea, dry heaving, malaise, profuse sweating, loss of appetite, cough, severe gastrointestinal problems, and diarrhea. It takes one to four years of antibiotics to treat infection. I find this infection very interesting. 

 

Start detoxing though and see if you feel better. For me it took a few years to figure out what I had, I actually had suicidal thoughts pop into my head. IV antibiotics riddled of all of my neurological symptoms. I just hope you find out what you're suffering from and get the appropriate treatment.

 

Nope, never worked around animals and Q-fever was tested on the Lyme panel I did (it came back negative). I don't sweat at all really, which is why I think the doctor doubted Babesia; I can't remember why she didn't believe I have Lyme. She said that if she suspects Lyme, she will prescribe antibiotics or herbals.

 

I am having frank suicidal thoughts lately, so hope something can help. 

[odspot]

Starting to feel really hopeless. Suicidal ideation is intensifying and I wonder how I'm ever going to overcome this. I hate how much my cognition has deteriorated since I was experimenting with nootropics 2 years ago; now I can barely handle a cup of coffee. It just feels like a pointless Sisyphian struggle. 

I started the coffee enemas today, at least trying to take a step in the right direction. 

[odspot]

I would say it sounds like lyme, but when you say things like revved up energy, nervousness, paranoia, etc., these symptoms point toward problems with the gut. My father and one of my sister's friends have had lyme disease, and it's a very sluggish, internally and externally chronically tired feeling, whereas a lot of gut problems make you physically tired, but have different mental effects like the ones you've described.

 

Just curious, but do you have anything I could read re: gut problems and the mental effects I described?

 

As an update, my mood symptoms are still horrific. I am doing 4-5 coffee enemas a week, but may slow down because they feel a little taxing on my system. Most people report feeling wonderful afterwards, but they make me feel like sh*t, I suspect either due to copper elimination or die-off. As an aside, I am pooping out lots of weird stuff, including what appears to be -- upon googling -- Candida. That, coupled with all my GI symptoms, new food sensitivities and musicman's remark, was enough to convince me to ask a friend to borrow the $360 necessary to get a stool analysis done.

 

The downside is that it will take 4 weeks to complete, but I would be very surprised if it doesn't reveal significant dysbiosis. The question then is whether dysbiosis is actually at the root of my issues, or just a byproduct of stress and poor immunity. There sadly seem to be cases popping up here that are similar to mine where prolonged, extreme stress, stimulant overuse, PTSD etc. leads to dysautonomia, physical breakdowns etc. 

 

Not sure how much chance I have of recovering physically at this point. Every hour is a battle to get through. I've polled some people on a chronic fatigue group who did the same gut test and most didn't see significant changes in addressing bad bacteria overgrowth.

[Omega 3 Snake Oil]

I have Lyme and bartonella (and EBV). I thought I had copper toxicity but was just tested via hair sample and not only do I not have high copper, I have higher zinc, so it's unlikely I have copper tox.

If you think you may have Lyme, I recommend Igenex. That was key for my being diagnosed...

[sbenton]

Hey Odspot, keep it hopeful. Itll clear up faster than you think.

 

First thing: Check your house, car, work for mold exposure. If you have pets double up on the air filters you need to get. CNS complications get super inflamed with any sort of mold. It like that nagging mosquito while your working outside. 

 

Even if its not intestinal, you must start with cleaning the nasal passages. If you have anything residing up there it will continue to inoculate your system persistently, even after bowel cleanses. Polyps are a for sure sign of fungal related species like Aspergillus. typically sea salt, Xylitol and another killing agent will suffice. At least 25 rinses.  

 

Do you get constipated?

Are you under or overweight?

Is your hair falling out?

Do you have white spots on your nails?

Are Symptoms worst in the morning or night?
Do stimulants like Sudafed or a caffeine pills help?

Any head trauma?

 

(Im not a Dr so be diligent here)

 

Stop those freaking enemas until your completely restored!!!

 

If your not having 1-3 daily bowel movements of perfect stool then you focus there first. 1-3 weeks tops!

You need to get your nourishment up to par before going to war against your nervous system

This means bowel scraping-killing-healing-replenishing.

Colon Cleanse- (Dr. Schulze works well-follow the directions)

Liver Cleanse if really needed.

Essiac Tea for two weeks

Possibly 1/2-1 teaspoon in sugar of Pure Gum Turpentine daily for a few weeks if your way worst then expected. 

Aloe Vera Fasts and Bone broth fasts!!! 2 Days

After fasting you mega dose the hell out of probiotics. Look into Elixar. Don't be afraid of 200 billion+

Start getting used to HCL tablets when eating. 1000-2000mg per big meal.

ketogenic diet- Look into Perfect Health Diet (PHD.com)

 

Once bowels are stabilized

Cinnamon Oil from Sri Lanka( Few Drops into a 1/4 cup olive oil tincture-then a few drops from that)

Turpentine Protocol(Be very carful)

Infrared Sauna + Niacin (the flushing kind)

8 Min of Ice cold baths with Cayenne pepper in your system

Make it utterly miserable for any pathogen to live.

 

These are just tactics. Imagine filling a large bucket up with assorted balls.

Some tactics are bigger than others but they are all needed to fill the bucket.

 

One supplement isn't going to cut it if your CNS has been compromised.

Your diet wont heal you but it will prevent further damage and stabilize your success markers. EAT as much nourishment as possible. NO grains, limit glucose exposure, no soy, no corn. Dairy can be very helpful for those that tolerate. Real dairy not the grocery store kind that wreaks havoc on people.

 

The money spent on this short term will be well worth the investment. Imagine how productive you'll be once you get your life back.

 

Do what you need to thrive then write a book on your success. Or just go enjoy life. We all know its just a bug passing through. I'm hoping for the best.  

 

[gamesguru]

get the vitamin d and zinc up asap.  try NAC too

[Polyamine]

It is very rare for sick people like yourself to only have one pathogen causing issues.  Candida overgrowth is often a byproduct of having another infection and it is very common in Lyme patients.  Does eating sugars or carbohydrates make you feel better or worse?  Yeasts ferment sugars in our GI tract to make energy and if you often crave sweets or sugar, Candida may be the reason.  Taking Florastor or the Epicor mentioned above just puts good yeasts back in your GI tract.  They compete with Candida and lessen their numbers.  If you herx, it's because you aren't methylating enough to eliminate the byproducts of the dying Candida. 

 

One thing that often happens with chronic infections that can lead to suicidal thoughts is a decrease in BH4.  Eating colored fruit daily helps increase deficient pterins used to make BH4.  There is a lot more to it but that would be the first step.  If you do have a Candida infection, eating fruit may be problematic and your detoxing may need to be increased before you start eating fruit.  Glutamate levels most likely need to be decreased and what you eat is certainly important. 

[odspot]

It is very rare for sick people like yourself to only have one pathogen causing issues.  Candida overgrowth is often a byproduct of having another infection and it is very common in Lyme patients.  Does eating sugars or carbohydrates make you feel better or worse?  Yeasts ferment sugars in our GI tract to make energy and if you often crave sweets or sugar, Candida may be the reason.  Taking Florastor or the Epicor mentioned above just puts good yeasts back in your GI tract.  They compete with Candida and lessen their numbers.  If you herx, it's because you aren't methylating enough to eliminate the byproducts of the dying Candida. 

 

One thing that often happens with chronic infections that can lead to suicidal thoughts is a decrease in BH4.  Eating colored fruit daily helps increase deficient pterins used to make BH4.  There is a lot more to it but that would be the first step.  If you do have a Candida infection, eating fruit may be problematic and your detoxing may need to be increased before you start eating fruit.  Glutamate levels most likely need to be decreased and what you eat is certainly important. 

 

Yes, carbohydrates were making me worse. I cut out carbs and sugar pretty early into the illness when I switched to Keto due to the hypoglycemia I was getting. My doctor didn't think I have Lyme. I think the gut is a good place to look, so I am still just holding out for the results of the stool analysis (3 weeks), as well as a parasite test she's ordered; seeing something tangibly wrong would at least give me some hope to keep going. I notice after the coffee enemas, I get intense cravings for sugar and bread (which I don't normally crave on Keto); then, the next day I typically have 3-4 bowel movements and pass a lot of stringy white stuff that resembles images of Candida. My fear though is that I've read Keto can actually feed Candida, but it's the only thing that controls the hypoglycemic attacks I was getting.

 

She's testing me for MTHFR. I'm a little scared to start addressing methylation or mess around with supplements too much yet, due to my strong reactions. I may just keep sticking to the enemas + diet for now.  

[odspot]

Taking Florastor or the Epicor mentioned above just puts good yeasts back in your GI tract.  They compete with Candida and lessen their numbers.  If you herx, it's because you aren't methylating enough to eliminate the byproducts of the dying Candida. 

 

By the way, I noticed a lot of gut-related supplements make me feel like crap. Just before I 'crashed', I was eating a lot of sauerkraut, which would make me depressed and unbearably foggy (but I didn't connect the two). There's a probiotic that people on phoenixrising were raving about -- Miyarisan from Japan -- but one dose left me, again, depressed, foggy, tired etc. The Epicor likewise made me foggy and exacerbated some of my neurological symptoms like feeling off-balance etc. 

 

I generally only took one dose of each though, so would it possibly be worth trialing e.g. the Epicor for longer to see if things improve, or should I look at addressing methylation etc. first? 

[Hip]

It is possible you have chronic fatigue syndrome (myalgic encephalomyelitis), which is usually triggered by infection. You might like to look at the CDC definition of ME/CFS, or the stricter CCC definition (see page 2), and check if your symptoms match those ME/CFS diagnostic criteria.

 

The usual infectious pathogens linked to triggering ME/CFS are Epstein-Barr virus, HHV-6, coxsackievirus B, echovirus, parvovirus B19, Chlamydia pneumoniae, Borrelia, and in Australia, Ross River virus can also cause ME/CFS.

 

Coxsackievirus B and echovirus are hard to test for, but ARUP Lab in Utah USA can test for them.

 

Some more info here: Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment

 

Edited by Hip, 18 September 2016 - 04:56 AM.

[odspot]

It is possible you have chronic fatigue syndrome (myalgic encephalomyelitis), which is usually triggered by infection. You might like to look at the CDC definition of ME/CFS, or the stricter CCC definition (see page 2), and check if your symptoms match those ME/CFS diagnostic criteria.

 

The usual infectious pathogens linked to triggering ME/CFS are Epstein-Barr virus, HHV-6, coxsackievirus B, echovirus, parvovirus B19, Chlamydia pneumoniae, Borrelia, and in Australia, Ross River virus can also cause ME/CFS.

 

Coxsackievirus B and echovirus are hard to test for, but ARUP Lab in Utah USA can test for them.

 

Some more info here: Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment

 

Yes, I was diagnosed with CFS -- as I mentioned in my first post, I saw a CFS specialist. I tested negative for all viral infections, aside from the chicken pox virus, varicella-zoster virus (VZV). 

 

However, that still doesn't really help me in terms of finding what is causing such severe symptoms. I must admit, I was skeptical about the heavy metals idea at first, but everything I've read about copper toxicity(i.e. biounavailable copper) makes sense. That also explains why coffee enemas -- which I have been keeping up, and which mobilize copper out of storage -- give me such intense reactions: since beginning them, I have been feeling nauseous, have a metallic taste in my mouth, body odor has worsened, my skin is peeling, I'm more frequently cold, and the anxiety/dissociation is horrific etc. I guess this correlates with a 'detox' reaction. However, I am also having extremely vivid dreams, my cognition is better and less disorganized, and I am less riddled by low cortisol symptoms.

 

My stools are also very strange. They smell strongly of ammonia and contain lots of weird material. My doctor has given me a referral to a gastroenterologist. I think it's worth pursuing, especially since gut issues run in my family (my brother has Chrohn's, mom has IBS, grandfather suffered from ulcers etc.).

 

The other thing I am looking into is an earthing mat. Some people claim they've helped a lot with 'adrenal issues' and can upregulate/normalize cortisol. I'm kind of wondering if a more indirect approach like that taken towards improving my stress response might then allow me to tolerate other treatments such as methylation etc.

[Hip]

 I tested negative for all viral infections

 

Were you tested for the two enteroviruses most commonly linked to ME/CFS, coxsackievirus B and echovirus? These are probably the major cause of ME/CFS.

 

In the chronic long term infections found in ME/CFS patients, these enteroviruses live inside human cells, as an intracellular infection (called a non-cytolytic enterovirus infection), and so are hard to detect by regular blood tests (because there is not much virus in the blood; the virus is living in the body tissues).

 

You have to have a very sensitive enterovirus test to detect these viruses. Do you know if you were tested for these enteroviruses, and if so, which type of test did you use? Enterovirus and ME/CFS expert Dr John Chia uses neutralization tests to detect enterovirus in his ME/CFS patients, as he found that other types of test often miss enterovirus infections.

 

My own ME/CFS appeared to be triggered by coxsackievirus B, and I came out as a high positive for this virus using a neutralization test (but I was negative by the insensitive complement fixation test)

 

If you are positive for enterovirus, Dr Chia has found that the immunomodulator oxymatrine can be very effective in fighting this virus, although oxymatrine does not work for all patients. 

 

 

 

It does seem that your body is in a pretty toxic state at the moment, given that you find it hard to tolerate supplements. So it might be a good idea to try to address this. Someone here found that malic acid is a good treatment for his high ammonia.   

 

I have read that ME/CFS patients who took liver supporting supplements such as milk thistle  to boost the liver's detoxification mechanisms became more tolerant to supplements. 

Edited by Hip, 18 September 2016 - 03:46 PM.

[birthdaysuit]

One thing that often happens with chronic infections that can lead to suicidal thoughts is a decrease in BH4.  Eating colored fruit daily helps increase deficient pterins used to make BH4.  There is a lot more to it but that would be the first step.  If you do have a Candida infection, eating fruit may be problematic and your detoxing may need to be increased before you start eating fruit.  Glutamate levels most likely need to be decreased and what you eat is certainly important. 

 

Not only can we see an increase in BH4 but almost anyone who is chronically sick will have elevated IL-6 which has been noted to increase suicidal tendencies as well as avoidance behavior.
 

[birthdaysuit]

 

It is possible you have chronic fatigue syndrome (myalgic encephalomyelitis), which is usually triggered by infection. You might like to look at the CDC definition of ME/CFS, or the stricter CCC definition (see page 2), and check if your symptoms match those ME/CFS diagnostic criteria.

 

The usual infectious pathogens linked to triggering ME/CFS are Epstein-Barr virus, HHV-6, coxsackievirus B, echovirus, parvovirus B19, Chlamydia pneumoniae, Borrelia, and in Australia, Ross River virus can also cause ME/CFS.

 

Coxsackievirus B and echovirus are hard to test for, but ARUP Lab in Utah USA can test for them.

 

Some more info here: Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment

 

Yes, I was diagnosed with CFS -- as I mentioned in my first post, I saw a CFS specialist. I tested negative for all viral infections, aside from the chicken pox virus, varicella-zoster virus (VZV). 

 

However, that still doesn't really help me in terms of finding what is causing such severe symptoms. I must admit, I was skeptical about the heavy metals idea at first, but everything I've read about copper toxicity(i.e. biounavailable copper) makes sense. That also explains why coffee enemas -- which I have been keeping up, and which mobilize copper out of storage -- give me such intense reactions: since beginning them, I have been feeling nauseous, have a metallic taste in my mouth, body odor has worsened, my skin is peeling, I'm more frequently cold, and the anxiety/dissociation is horrific etc. I guess this correlates with a 'detox' reaction. However, I am also having extremely vivid dreams, my cognition is better and less disorganized, and I am less riddled by low cortisol symptoms.

 

My stools are also very strange. They smell strongly of ammonia and contain lots of weird material. My doctor has given me a referral to a gastroenterologist. I think it's worth pursuing, especially since gut issues run in my family (my brother has Chrohn's, mom has IBS, grandfather suffered from ulcers etc.).

 

The other thing I am looking into is an earthing mat. Some people claim they've helped a lot with 'adrenal issues' and can upregulate/normalize cortisol. I'm kind of wondering if a more indirect approach like that taken towards improving my stress response might then allow me to tolerate other treatments such as methylation etc.

 

Elevated ammonia levels in the body are one example of Lyme disease infection, other bacterial infections can causes these elevated levels as well. My stools also smelt of ammonia. The Lyme bacteria release ammonia as an exotoxin within the body, which has the potential to damage neurotransmitter receptors and induce psychological disturbances of the brain, i.e. depersonalization.

[odspot]

 

 I tested negative for all viral infections

 

Were you tested for the two enteroviruses most commonly linked to ME/CFS, coxsackievirus B and echovirus? These are probably the major cause of ME/CFS.

 

In the chronic long term infections found in ME/CFS patients, these enteroviruses live inside human cells, as an intracellular infection (called a non-cytolytic enterovirus infection), and so are hard to detect by regular blood tests (because there is not much virus in the blood; the virus is living in the body tissues).

 

You have to have a very sensitive enterovirus test to detect these viruses. Do you know if you were tested for these enteroviruses, and if so, which type of test did you use? Enterovirus and ME/CFS expert Dr John Chia uses neutralization tests to detect enterovirus in his ME/CFS patients, as he found that other types of test often miss enterovirus infections.

 

My own ME/CFS appeared to be triggered by coxsackievirus B, and I came out as a high positive for this virus using a neutralization test (but I was negative by the insensitive complement fixation test)

 

If you are positive for enterovirus, Dr Chia has found that the immunomodulator oxymatrine can be very effective in fighting this virus, although oxymatrine does not work for all patients. 

 

 

 

It does seem that your body is in a pretty toxic state at the moment, given that you find it hard to tolerate supplements. So it might be a good idea to try to address this. Someone here found that malic acid is a good treatment for his high ammonia.   

 

I have read that ME/CFS patients who took liver supporting supplements such as milk thistle  to boost the liver's detoxification mechanisms became more tolerant to supplements. 

 

 

Yeah, the liver detoxification was the reasoning behind my doctor suggesting enemas. She said after a month or so, I should be able to tolerate supplements. 

 

I was tested for Coxsackie Virus; I can't recall if I was tested for echovirus. The testing was just done through a standard government lab, I'm not sure what test they used. Even so, would that information help me? I believe anti-viral drugs are extremely expensive in Australia, and the CFS clinic I attend doesn't prescribe them (from speaking to other patients). 

[odspot]

Elevated ammonia levels in the body are one example of Lyme disease infection, other bacterial infections can causes these elevated levels as well. My stools also smelt of ammonia. The Lyme bacteria release ammonia as an exotoxin within the body, which has the potential to damage neurotransmitter receptors and induce psychological disturbances of the brain, i.e. depersonalization.

 

 

 

 

Yes, I was diagnosed with CFS -- as I mentioned in my first post, I saw a CFS specialist. I tested negative for all viral infections, aside from the chicken pox virus, varicella-zoster virus (VZV). 

 

However, that still doesn't really help me in terms of finding what is causing such severe symptoms. I must admit, I was skeptical about the heavy metals idea at first, but everything I've read about copper toxicity(i.e. biounavailable copper) makes sense. That also explains why coffee enemas -- which I have been keeping up, and which mobilize copper out of storage -- give me such intense reactions: since beginning them, I have been feeling nauseous, have a metallic taste in my mouth, body odor has worsened, my skin is peeling, I'm more frequently cold, and the anxiety/dissociation is horrific etc. I guess this correlates with a 'detox' reaction. However, I am also having extremely vivid dreams, my cognition is better and less disorganized, and I am less riddled by low cortisol symptoms.

 

My stools are also very strange. They smell strongly of ammonia and contain lots of weird material. My doctor has given me a referral to a gastroenterologist. I think it's worth pursuing, especially since gut issues run in my family (my brother has Chrohn's, mom has IBS, grandfather suffered from ulcers etc.).

 

The other thing I am looking into is an earthing mat. Some people claim they've helped a lot with 'adrenal issues' and can upregulate/normalize cortisol. I'm kind of wondering if a more indirect approach like that taken towards improving my stress response might then allow me to tolerate other treatments such as methylation etc.

 

 

 

I know you have mentioned Lyme, but the more I learn, the more I just don't think it makes sense for me. As you say, other bacterial infections are linked to ammonia, and I've only been experiencing it since starting enemas, so it might be linked to killing off something in my gut. I am very curious to get my stool test back in the next 2 weeks or so.

[Hip]

 

I was tested for Coxsackie Virus; I can't recall if I was tested for echovirus. The testing was just done through a standard government lab, I'm not sure what test they used. Even so, would that information help me? I believe anti-viral drugs are extremely expensive in Australia, and the CFS clinic I attend doesn't prescribe them (from speaking to other patients). 

 

 

It probably was not a neutralization test (these are very rare and complex to perform); it was probably a CFT or ELISA test, which are insensitive, so even though you have a negative result, you may well have an ongoing coxsackievirus B infection.

 

You can of course try oxymatrine without knowing for sure that you have coxsackievirus B / echovirus. That is what I did, because I had a good inkling that my ME/CFS-triggering virus was an enterovirus, based on symptoms and other factors, even before I got around to testing.

 

Oxymatrine can be bought as a dietary supplement, and it is inexpensive. It is derived from the herb Sophora root. More info about buying and taking oxymatrine in this post.

[odspot]

 

 

I was tested for Coxsackie Virus; I can't recall if I was tested for echovirus. The testing was just done through a standard government lab, I'm not sure what test they used. Even so, would that information help me? I believe anti-viral drugs are extremely expensive in Australia, and the CFS clinic I attend doesn't prescribe them (from speaking to other patients). 

 

 

It probably was not a neutralization test (these are very rare and complex to perform); it was probably a CFT or ELISA test, which are insensitive, so even though you have a negative result, you may well have an ongoing coxsackievirus B infection.

 

You can of course try oxymatrine without knowing for sure that you have coxsackievirus B / echovirus. That is what I did, because I had a good inkling that my ME/CFS-triggering virus was an enterovirus, based on symptoms and other factors, even before I got around to testing.

 

Oxymatrine can be bought as a dietary supplement, and it is inexpensive. It is derived from the herb Sophora root. More info about buying and taking oxymatrine in this post.

 

 

What symptoms usually suggest an enterovirus-triggered CFS?

[Hip]

What symptoms usually suggest an enterovirus-triggered CFS?

 

When you first catch an enterovirus like coxsackievirus B or echovirus, the first symptoms are often a gastrointestinal illness lasting a few days (sickness or vomiting), which can involve abdominal pain, or a herpangina sore throat (Google this to see images of the herpangina sore throat). 

 

In my case, I was able to work out the incubation period of the virus I caught (this is the time between first catching the virus, and the appearance of its first acute symptoms). I caught my virus from kissing someone on a first date, through saliva. The first symptoms then appeared within 24 hours. So that's how I was able to know the incubation period. This is not always possible, because many people do not know where and when they caught their virus. 

 

This 24 hour incubation period of the virus I caught rules out most other viruses, because most viruses have much longer incubation periods. For example, the incubation period of Epstein-Barr virus, when it causes mononucleosis / glandular fever is four to eight weeks, so the virus I caught could not possibly have been EBV. However, coxsackievirus B and echovirus have quite short incubation periods, just a few days, so by the incubation period, it looks like what I caught was likely an enterovirus.

 

There are not that many options, because only relatively small number of viruses and bacteria are linked to triggering ME/CFS. So because there are so few options, it makes it easier to home in on the likely infectious cause of your ME/CFS.

Edited by Hip, 18 September 2016 - 08:34 PM.

[odspot]

 

What symptoms usually suggest an enterovirus-triggered CFS?

 

When you first catch an enterovirus like coxsackievirus B or echovirus, the first symptoms are often a gastrointestinal illness lasting a few days (sickness or vomiting), which can involve abdominal pain, or a herpangina sore throat (Google this to see images of the herpangina sore throat). 

 

In my case, I was able to work out the incubation period of the virus I caught (this is the time between first catching the virus, and the appearance of its first acute symptoms). I caught my virus from kissing someone on a first date, through saliva. The first symptoms then appeared within 24 hours. So that's how I was able to know the incubation period. This is not always possible, because many people do not know where and when they caught their virus. 

 

This 24 hour incubation period of the virus I caught rules out most other viruses, because most viruses have much longer incubation periods. For example, the incubation period of Epstein-Barr virus, when it causes mononucleosis / glandular fever is four to eight weeks, so the virus I caught could not possibly have been EBV. However, coxsackievirus B and echovirus have quite short incubation periods, just a few days, so by the incubation period, it looks like what I caught was likely an enterovirus.

 

There are not that many options, because only relatively small number of viruses and bacteria are linked to triggering ME/CFS. So because there are so few options, it makes it easier to home in on the likely infectious cause of your ME/CFS.

 

 

So is that first contact with the virus, or also related to the 'reactivation' that can accompany CFS? My understanding was that the viruses might not initially trigger CFS but that their reactivation can accompany it somehow

 

Anyway, a couple of months before my major crash, I was in bed for a week with vomiting, but I would still have difficulty working out when I first caught the virus.

 

What I have been wondering is whether gut dysbiosis itself (which might qualify as a bacterial issue?) could trigger CFS. That was the angle I've been looking at since my symptoms are predominantly gut-related at this point, but I'm not sure if the dysbiosis just accompanied a weakening immune system.

[Hip]

IBS is very strongly linked to ME/CFS, and lots of ME/CFS patients have gut issues like dysbiosis, leaky gut or SIBO. Some people find that treating gut issues helps ME/CFS. There are some studies showing that fixing leaky gut gut via diet and supplements can help improve ME/CFS symptoms. See here:

 

Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

 

 

Viral reactivation is a little different to catching a virus that you never had before. Reactivation is an old virus (that you may have caught decades before) coming back to life. Old viruses in the body are usually held in check by the immune system. However, if there is some immune weakness, then these old dormant (latent) viruses can reactivate. These reactivated viruses may then make your ME/CFS symptom worse. However, they cannot be the triggering virus of your ME/CFS, because they were already in your body. So logically, it is only a new virus that you catch that can be a trigger.

 

When you first catch enteroviruses, these tend to produce immune weakness for a few months, which can result in the reactivation of the varicella virus in your body, so that you get an outbreak of shingles. 

[odspot]

IBS is very strongly linked to ME/CFS, and lots of ME/CFS patients have gut issues like dysbiosis, leaky gut or SIBO. Some people find that treating gut issues helps ME/CFS. There are some studies showing that fixing leaky gut gut via diet and supplements can help improve ME/CFS symptoms. See here:

 

Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

 

 

Viral reactivation is a little different to catching a virus that you never had before. Reactivation is an old virus (that you may have caught decades before) coming back to life. Old viruses in the body are usually held in check by the immune system. However, if there is some immune weakness, then these old dormant (latent) viruses can reactivate. These reactivated viruses may then make your ME/CFS symptom worse. However, they cannot be the triggering virus of your ME/CFS, because they were already in your body. So logically, it is only a new virus that you catch that can be a trigger.

 

When you first catch enteroviruses, these tend to produce immune weakness for a few months, which can result in the reactivation of the varicella virus in your body, so that you get an outbreak of shingles. 

 

Okay, that makes sense, thank you. I never had a shingles outbreak. I basically just went through several years of severe, significant stress, depression, anxiety where looking back it seems like I was in a chronic 'high cortisol' state. Following that, the first symptoms I noticed were 'adrenal fatigue', i.e. hypoglycemia, poorer stress tolerance etc. This continued until the more severe crash involving dizziness, balance problems etc. and then the progressively worse GI issues.

 

Is it possible I could have CFS without an enterovirus? Also, do you know what chronically high monocytes would indicate in the context of CFS? Are they usually linked to viral or bacterial infections?