28 replies to this topic

[Picard]

Hi, folks. I'm a long-time lurker attempting to unravel the mysteries of my health complaints and finally decided it best to ask for more perspectives on this. Generally, I think highly of the people here and value your insight.

I had a bizarre flu-like episode about two and half years ago that has caused a plethora of strange problems. Naturally, I've seen numerous physicians who have scratched their heads at some length and not arrived at a concrete diagnosis. My inclination to pursue this is driven by cognitive involvement. My ability to digest high-level, scholarly material is worse. My memory is a shadow of its former glory. Fatigue is significantly sapping my motivation.

We could go on ad nauseum about various tests that have yielded unremarkable results, but it might be best to focus on the suspect ones.

Most recently, I had a sleep study which prompted a diagnosis of severe sleep apnea. While this is highly unusual because of my youth (early 20s) and light weight (just over a hundred lbs), the objective metrics are undeniable. I had an apnea-hyponea-index of around 40, predominantly consisting of obstructive-airway events.

That could explain everything, right? Sure. But, I've had the gold standard for treatment in my home for the past two weeks and am not experiencing relief (despite perfect compliance). Based on my analysis of the data generated by this contraceptive, I can see the obstructive events are mostly treated by it. However, it's reporting a fairly high number of clear airway events presumably indicating presence of central apneas.

Also worthy of note is the fact that another sleep study performed in May found no presence of sleep apnea. The AHI was below 5. However, my awakenings/arousals were quite high even in the absence of respiratory difficulties. These are awakenings that I'm normally unconscious of, but I typically can't sleep for longer than two hours without consciously waking anyway. Well, ****.

My attempt to reconcile these conflicting reports has led me through a maze of poorly understood neuropsychiatric doorways. Could I have some undiagnosed form of insomnia which manifests as frequent nocturnal awakenings, thus undermining adequate, restorative sleep? Is that disorder caused by another depressive disorder, which results from some deficiency, surplus, or imbalance of hormones? Is that depressive disorder somehow connected back to the flu-like episode 2.5 years ago?

Articles like this make me wonder about that last question.
http://www.psycholog...-deal-the-devil

Regardless, I admit that I'm in way over my head. I would love to begin addressing these complaints with a treatment regimen of some kind. This isn't necessarily a good idea without a better grasp of what's going on, but that appears to be the name of the game with neuropsychiatric treatments.

What are your impressions of this? I'm glad to post more details regarding prior test results, featuring other seemingly unrelated and bizarre outliers... However, I'd like to gauge feedback thus far before confusing things further.

Thank you for your time.

[niner]

The flu-like episode, could it have been Lyme? Did you live in a Lyme-endemic area, and/or were you tested? Did you have sleep problems prior to the episode, or did that all come later? It doesn't sound like you have typical apnea, at any rate.

[Picard]

I suspected Lyme, at least partly because of bizarre combination of symptoms and multiple bug bites in the days before. I had ELISA and Western Blot Assays performed within two months of onset that were both negative. However, I went on combination antibiotics (doxy and amox) with multiple, high doses per day for 2 months. I'd assume that would be sufficient to eradicate a potential Lyme infection at an early stage. I also had Igenex panels run later with negative results. 2 bands on one test were positive, with an indeterminate on another band. Every other test was clear on all bands.

Here's a brief run-down of symptom presentation:

Acute onset of flu-like symptoms consisting of migratory joint pains (worst in my fingers and knees), fever of 103-104F, malaise, neck pain, tachycardia, severe diarrhea, and dehydration (likely from the diarrhea). Went to the ER with no concrete diagnosis; they gave me a saline drip and tylenol, which seemed to treat the fever and tachycardia pretty well. Minimal bloodwork showed an elevation in WBC, but little else. Chest X-Ray was clear. After tiring of waiting, I was discharged with paperwork documenting an acute enteritis.

Roughly a week later, I developed raging tinnitus with no predisposition toward loud noises/environments/etc. After 4-6 weeks, fasciculations began in random areas, mostly when at rest. 2 years later, many symptoms have persisted in differing degrees. The fatigue and effect on my cognition are the most pressing for me. Previously, I could wake refreshed with 6-7 hours of sleep. Now, I never feel refreshed, even after 8-10 hours. I still have gastrointestinal pain and problems, which have been diagnosed as IBS. I still have neck pain, though now accompanied by crackling, which is worst in the mornings. I still have seemingly random joint pains, though they are worst in my left big toe, right middle and index fingers, and right knee. Crackling quickly developed in my left big toe, though it also presented in the two fingers in my right hand more recently.

Fortunately, I am and have been insured during this period. MRI of my brain 2 months after onset yielded nothing. Evaluations by an ENT show a minor drop in hearing in my left ear, though hearing for both ears is still within normal ranges. All bloodwork has been inconclusive, though My CD-57 is low, WBC figure low on recent CBC, albumin has been high several times, platelets low, testosterone low (recent test). Upper endoscopy showed gastrititis. Colonoscopy couldn't be completed due to acute angulature at splenic flexure. Breath tests showed no enzyme defficiencies. Skin allergy tests showed reactions to the majority of allergens tested, but no positives for food.

[Hebbeh]

Severe cases of west nile virus with similiar symptoms are known.

What Are the Symptoms of WNV?

• Serious Symptoms in a Few People. About one in 150 people infected with WNV will develop severe illness. The severe symptoms can include high fever, headache, neck stiffness, stupor, disorientation, coma, tremors, convulsions, muscle weakness, vision loss, numbness and paralysis. These symptoms may last several weeks, and neurological effects may be permanent.

Edited by Hebbeh, 01 October 2012 - 03:35 AM.

[Picard]

I believe my WNV titers came back negative. My coxsackie panel registered positive on at least one band, though.

Really appreciate the ideas, everyone.

[Psychonaut]

I hate to say this but just about everything you mention sounds like a case of ME/CFS caused by the viral episode which is the classic trigger, the cognitive and unrefreshing sleep are hallmark symptoms, a fully blown diagnosis probably depends on whether you have PEM (post exertional malaise) and your symptoms, especially the cognitive ones become much worse after activity/exercise, which is basically a latent infection reactivating all the time causing mild-moderate brain inflammation.

You should find a lab who can run extensive viral tests, EBV, HHV-6, Enterovirus, Parvovirus ect. Recently I have read once you get EBV is can trigger off other viral infections as well but I do not know the details of this, could be untrue.

Also did you do anything to combat 2 months of anti-biotics as well? That is surely going to have an impact on your immune system and you would need to diet and supplement to replace good stomach flora. I wonder whether this might even hint to a gut brain bacterial problem?

[Picard]

I'm not sure of the criteria for PEM off-hand, but may fit an intuitive definition of it. Physical and mental fatigue are more pronounced post-workout. I can't help wondering if this might be better attributed to the non-restorative sleep issue.

I've tried many probiotics. What gives me hope of some lingering digestive issue is my response to some. VSL#3 basically triggered diarrhea and expulsion of mucus. Florastor dried out my mouth and worsened joint pains. Yet, I still have gas shortly after eating some foods. I also still have residual regularity issues, though they are much milder after courses of metronidazole and tinidazole.

[niner]

One thing that crosses my mind is something like a reactive arthritis with CNS involvement. This would entail being infected by a bug that presents an antigen which is similar enough to your own body that you get an autoimmune attack. The persisting symptoms would probably require that you have a persisting low level infection. Have you ever had an immuno-suppressive anti-inflammatory like prednisone (corticosteroid) ? If so, did it help a lot? The long course of doxy/amox, not to mention the azoles, makes me feel like this is a long shot, but it's conceivable that something slipped through the coverage of the drugs you've had, assuming that the initial infection was in fact bacterial.

[Psychonaut]

I'm not sure of the criteria for PEM off-hand, but may fit an intuitive definition of it. Physical and mental fatigue are more pronounced post-workout. I can't help wondering if this might be better attributed to the non-restorative sleep issue.

I've tried many probiotics. What gives me hope of some lingering digestive issue is my response to some. VSL#3 basically triggered diarrhea and expulsion of mucus. Florastor dried out my mouth and worsened joint pains. Yet, I still have gas shortly after eating some foods. I also still have residual regularity issues, though they are much milder after courses of metronidazole and tinidazole.

Hey Picard, I do not think there is a definitive definition for PEM but is generally a feeling of unease or being unwell, exacerbation of cognitive symptoms, possible pressure around the head/ears, increased pain for some and of course 'fatigue'. Cognitively you can also have a 'wired' type feeling which is what leads to feeling a little uneasy/restlessness even though you are tired as hell and really need to rest and sleep it will end up preventing sleep; your circadian rhythm will go to sh*t too because of the neurological problems. When we talk about physical and mental fatigue in ME it is a whole different ball game to what the average person experiences as well, so I hope what you are experiencing is more of the normal type.

Never heard of those probiotics, used garden of life primal defence myself for a long time and spirulina but I think the key to healthy flora is avoiding simple carbs, too much dairy and getting good micros from vegies; eat a rubbish diet and your stomach has no hope.

Do hope it is just your sleep issues because you would not wish ME on anyone and as it stands no real treatment except maybe Rituximab if you can afford it or get in a trial. If your symptoms progress you would really need to be mindful of managing your activities, just something to keep in mind.

[Picard]

Niner, I haven't tried a systemic steroid. The idea of a persistent low level infection causing reactive arthritis is interesting. I've never had a blood culture or LP performed. A work-up by a rheumatologist originally yielded an ANA result of 8.0, which he described as a strong positive. Though, I've since been told by another doctor this isn't a positive, the usual range a minimum threshold of 30. My sed rate has been low. Tests of my C-reactive Protein are similarly uninteresting.

The trials of metronidazole and tinidazole were very short: 5 days on metro and 6 days on tini. Interestingly, my oral health improved noticeably. Prior to the trials, I had issues with low salivation causing dry mouth. I'm not sure if I can attribute this exclusively to those drugs due to my cessation of Florastor just before starting; it seems there's a chance this probiotic can go systemic.

Psychonaut, I'd hate to chalk this up to being another case of unsolvable ME/CFS. While I'm hopeful my complaints are primarily caused by sleep issues, the frequent nocturnal awakenings are concerning. Even on rare nights where my apnea events are very low (both central and obstructive), I still wake within 2-4 hours of sleeping.

This is especially frustrating given my circumstances. I'm accepted to a truly amazing graduate school, but have deferred in order to figure this mess out.

[niner]

Niner, I haven't tried a systemic steroid. The idea of a persistent low level infection causing reactive arthritis is interesting. I've never had a blood culture or LP performed. A work-up by a rheumatologist originally yielded an ANA result of 8.0, which he described as a strong positive. Though, I've since been told by another doctor this isn't a positive, the usual range a minimum threshold of 30. My sed rate has been low. Tests of my C-reactive Protein are similarly uninteresting.

You probably wouldn't find it with a culture; it could be at a very low level and still cause problems. Your rheumatologist might be using an unusual scale for the ANA- the typical output is a titre presented as 1:n, which corresponds to the highest dilution at which an antibody reaction is observed. On that scale, 1:8 would be really weak. But if the rheumatologist calls it a strong positive, I'd take his or her word on it, rather than ignore it on the advice of someone who might be misinterpreting the number. It really might be worth trying a single dose of a steroid as a diagnostic. If a dose of prednisone makes you feel a lot better, I'd be looking for an autoimmune problem. You can take a single low dose (say 5-10 mg) without worrying about HPA suppression or with any need for tapering.

[Picard]

I have an appointment scheduled with the same rheumatologist in roughly two weeks and will definitely bring this up. Would one low dose be all that's necessary for me to notice an effect?

Another point in the theory's favor is I've developed a form of skin mottling associated with some autoimmune conditions. Basically, some spots on my skin appear white or lighter in contrast to the surrounding skin color. They're particularly noticeable when the rest of the area is pink/red, such as after working out or during a niacin flush. I can send you a picture if this may be relevant/helpful.

Thanks again for your time.

[niner]

I have an appointment scheduled with the same rheumatologist in roughly two weeks and will definitely bring this up. Would one low dose be all that's necessary for me to notice an effect?

Another point in the theory's favor is I've developed a form of skin mottling associated with some autoimmune conditions. Basically, some spots on my skin appear white or lighter in contrast to the surrounding skin color. They're particularly noticeable when the rest of the area is pink/red, such as after working out or during a niacin flush. I can send you a picture if this may be relevant/helpful.

Thanks again for your time.

I'd think one dose would be enough to notice, yes. I'm not familiar with the skin mottling as an autoimmune signifier, so I probably wouldn't be much help on that, but autoimmune conditions are a rheumatologist's bread and butter, so there should be some expertise there.

[Psychonaut]

Picard if you do not have any of the classic symptoms I described you are probably safe from ME, especially massive cognitive decline, exhaustion and sleeping problems from exercise.

One thing I did forget to add before though is you might consider getting a T cell count to check if you may have lymphocytosis, this could show whether you do have a reactivating infection or not; since you say all this started from a flu like episode you would be crazy not to check things like this off including a full viral check.

Good luck man, I am 12 years into ME but one of the lucky ones to be nearly out of it, am 32 and looking to go back to school; as much as we think we need to be on top of things there is no rush

[Picard]

Psycho, do you mean the sleep problems are exacerbated by exercise? I do feel more fatigued and slower after, but don't think it worsens my sleep quality. On the opposite side of the token, I suspect it may improve my rest.

The T Cell count is a good recommendation. Is there a more specific name for the test? One catch is I'm finding references to total lymphocyte involvement in connective tissue disorders.

After articles like the following, I wonder if there are viral triggers for more autoimmune conditions:
http://discovermagaz...start:int=0&-C=

[Psychonaut]

Hey Picard, yes sleep problems can be made much worse from PEM, if exercise is helping your sleep this is good. People with ME never have anything resembling proper sleep likely due to constant immune response/brain inflammation/neurological problems, the same reason for the drastic cognitive decline.

I can not help on the details of T Cell/lymphocytic testing since I have never had it done myself, best to just find a specialist, at least one who might take the idea that the viral episode might have been a trigger and will help you clear it up one way or the other.

There is an interesting run down of lymphocytosis from someone with ME here,

http://forums.phoeni...ocytosis.19673/

No doubt there could be viral triggers to autoimmune conditions, it has been speculated Epstein Barr could have a role in MS, MS has many similarities to ME as well and EBV has suspect in ME for a long time. There just seems to still be a real lack of understanding of the mechanisms of some of these viral infections and what they do in the body; the problem with EBV also it is so wide spread it has almost been ignored in medical science because it is near impossible to make correlation. Even the standard test for EBV is suppose to be unreliable, let alone the possibility that viruses can hide in B cells, can hide in tissue, for example EBV gets in bone marrow and is a suspect in rheumatoid arthritis. Rituximab was actually found to help rheumatoid arthritis patients who tested positive for EBV in their bone marrow, now it is helping some with ME.

Situations like this which can be a reminder how young science really is and how random finding answers can be, or even when a treatment is found the actual mechanisms are still unknown; Rituximab for ME was discovered when a few people getting treated for cancer who also had ME found their ME dramatically improve.

Anyway I am rambling like a mofo

[Hip]

Hi Picard

Do the following symptoms resonate with you:-


EARLY SYMPTOMS (first few weeks of infection):

✔ Chronic Sore Throat that never fully heals (but many don’t get this).
✔ Constant Congested Nose/Sinuses/Post Nasal Drip with unusually thick mucus.

ADDITIONAL SYMPTOMS (appear after a few months):

✔ Depression and low mood.
✔ Generalized Anxiety Disorder – anxiety which can get VERY extreme.
✔ Powerful Psychological Changes and cognition disruptions.
✔ Loss of Desires and sense of pleasure (anhedonia); loss of libido.
✔ Social Withdrawal – escaping social activities more and more.
✔ Loss of Drive and motivation (athymhormia).
✔ Memory Problems, both short-term and long-term recall.
✔ Unusual Sleepiness and a tendency to fall asleep more.
✔ Chronic Fatigue – notable loss of energy.
✔ Stomach Ache and Pains, with stomach / bowel rumbling.
✔ Pins and Needles (paresthesias), especially in the legs.
✔ Receding Gums — a sudden onset of periodontitis, with brown plaque appearing on teeth.

LATER SYMPTOMS (appear at approximately 12 to 18 months):

✔ Slight Wrinkling of the Skin with unusual, fine-textured wrinkles.
✔ Weak Legs and hips: legs and hip girdle feel loose.
✔ Weight Gain on Belly (Abdomen) — central obesity.
✔ Subtle Loss of Hearing Acuity in identifying sounds.
✔ Progressive Hearing Loss in elderly.
✔ Emotional Frailty, emotional lability, emotional flatness; irritability.
✔ Less Frequently: tinnitus; blurred vision; occasional transient joint pains.


If you have symptoms similar to the above, you may have caught the very same respiratory virus as I did. This potent virus I caught precipitated all these symptoms in me (and also in some other people who caught the same virus). Further details of this virus and its symptoms can be found on my website here.

I suspect the virus I caught is a coxsackievirus B (which is part of the enterovirus genus), so the fact that you said you had at least one positive in your coxsackievirus B panel fits in with the possibility of you having caught the same virus.

Having said that, there are in fact 6 different types of coxsackievirus B (CVB1 to CVB6), and all the Coxsackie B viruses produce roughly similar symptoms, so you may have caught a different serotype of coxsackievirus B.

In any case, coxsackievirus B is strongly linked to precipitating chronic fatigue syndrome (ME/CFS), so your cognitive dysfunction ("brain fog" as CFS patients call it), fatigue, PEM all fit into this possible ME/CFS diagnosis.

By the way, which lab did your coxsackievirus B panel? Was it ARUP Lab? Can you post up the results of this panel? I'd be interested to see them.

Edited by Hip, 04 October 2012 - 04:20 AM.

[Picard]

Hip,

I have some hits on the list and perused your site. Alas, I do not have a similar manifestation of respiratory symptoms. I do have sore throat complaints now, but can likely blame my CPAP treatment for it. Any other irritation is minimal and more probably stems from my massive allergies. I tested positive for every grass featured and also for household dustmites on my allergy skin test.

Dr. Chia's work caught my eye a few months ago; unfortunately, I feel his research has very limited treatment utility. Current antivirals do not adequately target coxsackies viruses. Other remedies have poorly understood mechanisms for treatment or may have little medical value entirely. This isn't through Chia's fault, but is better assigned to the patients themselves.

What happens when people are so desperate to be taken seriously by a disinterested medical community? The placebo effect can hit especially hard through mere conferment of hope. Or, symptomatic improvement can be realized through the therapeutic properties of a sympathetic ear. I don't mean to imply these symptoms are any less real for those afflicted by them, but do strongly feel one's mental outlook can impact perception of severity. And, there's a point where a depressed mood might cause additional symptoms which displace the original ones.

I also place a lot of stock in viral episodes triggering autoimmune conditions that closely resemble active infection. We have very intriguing papers concerning MS and schizophrenia involvement, for which one company is actively pursuing phase IIa clinical trials of an endogenous retrovirus treatment:
http://www.geneuro.c...ss_articles.php

It would not surprise me to see similar treatments being used for more autoimmune conditions and ME/CFS over the next decade.

You've definitely had a more exotic course of symptoms than I. Have you had tissue biopsies taken? Any interesting things to report?

Edited by Picard, 04 October 2012 - 11:59 PM.

[Hip]

Microbial infections, and especially enterovirus infections, are definitely known to trigger and maintain autoimmunity, and then once autoimmunity arises, many of the symptoms you get are in fact caused by the autoimmune attack on the body, rather than the microbe itself.

And of course allergies and hypersensitivity reactions are closely linked to autoimmunity, so allergies can often appear after you have contracted an infectious pathogen, and it remains as a chronic infection.

Have you seen the rituximab trials for ME/CFS? Bedbound ME/CFS patients are getting up an going on active vacations after rituximab treatment. Rituximab deletes B-cells in the blood, and since B-cells make antibodies, rituximab inhibits the production of antibodies and, moreover, autoantibodies. So the fact that some ME/CFS patients can achieve near full remission with rituximab indicates that much of ME/CFS may be an autoimmune condition, driven by autoantibodies that attack the body. This is exciting new research in the world of ME/CFS.


I came across some work that seems to show that the viral capsid of enteroviruses contains an allergen that may promote allergies and autoimmunity (see this post for details). So while you have an enterovirus infection smoldering away, you have these allergens being produced. Though as you say, there is not much in the way of antiviral treatments for enterovirus.

The interesting, easy-to-do treatment that Dr Chia has worked on for ME/CFS patients is oxymatrine treatment (oxymatrine is an over-the-counter oral herbal medication). Oxymatrine seems to help around 50% of ME/CFS patients with enterovirus infections, with around 25% doing very well on oxymatrine.


A lot of ME/CFS patients also have active infections with one or more herpes family viruses. The members of the herpes family (Herpesviridae) includes: herpes simplex 1, herpes simplex 2, Epstein-Barr virus, cytomegalovirus, varicella zoster virus, herpes 6 virus, herpes 7 virus, and Kaposi's-sarcoma virus. Adults generally have many of these herpes family viruses in their body, but usually in a dormant state, not an active state. But with the immunosuppression found in ME/CFS, one or more Herpesviridae can spring back to life and become active infections. So if is worth checking to see if you have any active herpes family infections. If so, antivirals such as Valtrex can be useful.


Certainly the therapeutic properties of a sympathetic ear are always beneficial, though in the case of ME/CFS, you often are confronted with unbelieving, cynical ears rather than sympathetic ones, as unfortunately many doctors and members of the general public alike mistakenly think that ME/CFS is all in the mind.

I have not had any biopsies done, but I am slowly trying out a range of ME/CFS treatments, hoping to find one or more that works well for me.

[Picard]

Well, I thought I'd update with some results after seeing the Rheumatologist. He ran a battery of tests suspecting Lupus again. Some results appear abnormal:
WBC 4.1 4.6-10.2 K/uL
MCH 32.3
27.0-31.2 pg
SGPT/ALTi 81.0 0.0-69.0 U/L
C4 10.5 17.4-52.2 mg/dL
Ketones * Trace
LYMPHS 18 19-48 %
Vitamin D, 25-Hydroxy 22.3 30.0-100.0 ng/mL

My WBC and platelets have been known to dip just below the bottoms of the normal ranges. The C4 may point toward some autoimmune condition; if we consider the WBC and platelet readings as low, that may indicate lupus. Low D values are correlated with autoimmunity. The SGPT/ALTi seems kinda scary, but this is the first time I've had an issue with elevated liver enzymes. Low testosterone may also related to autoimmune conditions.

Any thoughts?

[niner]

Well, I wouldn't worry too much about the liver enzymes, if it's one-time event. It's really easy for them to get elevated for a couple days- all you need to do is have a couple drinks sometimes. The correlation of D with autoimmunity- is that thought to be a causal relationship? If so, which direction does it go? D is easy to supplement, at least.

[nameless]

Although you already tested for Lyme, did you test for co-infections as well? Ticks may have multiple diseases, not just Lyme... and the co-infections can be just as nasty, or worse, than Lyme.

As Niner mentioned, I wouldn't worry about the liver enzyme thing, unless it's consistently high.

[Picard]

niner, I left with the impression low D values could cause or aggravate autoimmune conditions. Recent research also suggests supplementing D can be helpful in treatment of SLE:
http://www.ncbi.nlm....pubmed/23075451

nameless, I also had the complete coinfection panels run without positive results. If there is some underlying infection, it's very difficult to identify. I've never had a work-up performed by an ID doctor, but may have more cause to do so now with spread of this rash.

Thanks to the both of you for reassurance on the liver enzymes. I'm taking a hard look at what supplements to begin dosing for symptomatic improvement and am interested in the following:
Testosterone
-Forskolin
-Vitamin E
Inflammation
-Curcumin
-Vitamin D
-Vitamin A (from carrots)
-Vitamin K
Cognition
-Sulbutiamine
-Inositol
-Luteolin

[niner]

Picard, I would definitely get some vitamin D on board, with a target level for 25-OH-vitamin D in the 40-50 ng/ml range. If you use an oil-based formulation (softgel), this will probably mean supplementing at a level of 2000-4000 IU/day. Dry forms of vitamin D usually require higher doses and are less consistent in absorption, so I'd avoid them. Because of the involvement of Reactive Oxygen Species in chronic inflammation, I think a trial of C60-olive oil would be warranted.

[mabingham]

Picard, any progress on your condition?

[triffid113]

I hate to say this but just about everything you mention sounds like a case of ME/CFS caused by the viral episode which is the classic trigger, the cognitive and unrefreshing sleep are hallmark symptoms, a fully blown diagnosis probably depends on whether you have PEM (post exertional malaise) and your symptoms, especially the cognitive ones become much worse after activity/exercise, which is basically a latent infection reactivating all the time causing mild-moderate brain inflammation.

You should find a lab who can run extensive viral tests, EBV, HHV-6, Enterovirus, Parvovirus ect. Recently I have read once you get EBV is can trigger off other viral infections as well but I do not know the details of this, could be untrue.

Also did you do anything to combat 2 months of anti-biotics as well? That is surely going to have an impact on your immune system and you would need to diet and supplement to replace good stomach flora. I wonder whether this might even hint to a gut brain bacterial problem?

I agree with everything said above. But I would most concentrate on fixing the gut. I suspect you have gut issues which are interfering with mineral absorption, specifically magnesium, which is needed for productive sleep. when you took antibiotics for 2 months you killed your gut flora which allows buildup of pathogens. Abosolutely all I would do is this:

take 1g/day olive leaf extract to kill pathogens (use one bottle then assess if you need to continue...if you have low stomach acid you may need to continue)
eat yogurt (no need for fancy probiotics)
take a magnesium supplement (I use and recommend cal:mag 1:1 citrate by Nutricology. The citrate prevents stone formation.
If you suspect low HCL, take zinc.
You prolly should take a good multi (one bottle anyway) to jump start your nutrition to recover from poor digestion. I would choose a Thorne multi because they have active B's, and poor nutrition can take down the methyl cycle requiring active B's to fix

Edited by triffid113, 04 March 2013 - 08:56 PM.

[Tom_]

Your sleep presentation is very weird. An AHI of 40 isn't normally seen in 50 year old men with a BMI of 40-45. Then to have an AHI below 5, quite simply what the fuck.

Can you publish the results for both of the sleep studies? Information on

TST
sleep latency
REM latency
AHI
Arousals
and time spent in stages 1,2 SWS and REM.

In no order I would suspect:

CFS - its a shitty diagnosis but with a mix of antidepressants, modafinil, proper sleep hygine/medication, CBT (most effective for completely idiopathic cases), graded exercise where approiate immuno/antibac/viral therapy
depressive disorder (generally should be treated as primary regardless of cause) - easy to treat, treatment resistance is common so nuke it hard
sub-clinical infections - Not my area of expertise at all
Somatazisation with or without associated medical problems and hypochondria - While often a stigmatising diagnosis somatazisation should always be considered in the case of idiopathic and sub clinical syndromes
Primary idiopathic/psychophyiological insomnia - treatment for psychophysiological is effective, for primary its normally life long
some kind of respiratory disease - not a clue whats going on with your AHI - may even be worth a few imaging studies, hell it could even be treatment resistant TB - plant a PPD?
HPAG axis - nothing specific jumps to mind
Genetic disease - there are at least 6000, I know at a push maybe 30, they tend to be obvious from birth and have severe health effects but its not always the case here is a maybe a few hundred for you to look at http://en.wikipedia....netic_disorders
prodromal autoimmune disease

I'm not an advocate of the treat the symptoms approach but while you are testing for what I estimate at atleast 20,000 diseases you might as well try a few stimulant medications and try and rule out/treat psych causes. Trials of modafinil and Venlafaxine are worth a shot.

Good news is...its properly not cancer, you're still alive :L

[Picard]

Your sleep presentation is very weird. An AHI of 40 isn't normally seen in 50 year old men with a BMI of 40-45. Then to have an AHI below 5, quite simply what the fuck.

Actually, the AHI below 5 was from my first study conducted May '12. The one performed in August was the 40+. I've since had another one using my CPAP that shows the AHI is below 5.

However, I'm still dealing with frequent arousals and disrupted sleep (which I suspect may be due to breathing difficulties that heighten during REM sleep). I typically get two blocks of sleep each night that last between 2 to 3 hours apiece. Despite this, I feel my daytime energy levels are slowly improving. I've also noticed some improvements in cognition, but attribute a number of problems to the constantly disrupted/restricted sleep.

Can you publish the results for both of the sleep studies?

I assume you're more interested in the one which first diagnosed the apnea? It was split after half the night to attempt to titrate me for CPAP. This is the reason for the short length.
TST - 208.5 min
sleep latency - 7.2 min
REM latency - 141.5 min
AHI - 6.5/hr supine; 49.1/hr right side; 58.7/hr REM
Arousals - 40/hr in REM and 41/hr in NREM
and time spent in stages 1,2 SWS and REM. - WASO: 28.2; N1: 18.5 (8.9%); N2: 116 (55.6%); N3: 51.5 (24.7%) REM: 22.5 (10.8%)

If you would like to see the other results, I'm glad to post them.

Good news is...its properly not cancer, you're still alive :L

I think it's plausible that the viral episode managed to cause some neurological damage... That may extended to the sleep-disordered breathing issues now. An example of the presumed neurological damage is that curling my toes, flexing my foot toward my torso, whilst holding my leg straight causes my foot to twitch uncontrollably. It happens every time, regardless of mood or circumstance.

I agree with everything said above. But I would most concentrate on fixing the gut. I suspect you have gut issues which are interfering with mineral absorption, specifically magnesium, which is needed for productive sleep. when you took antibiotics for 2 months you killed your gut flora which allows buildup of pathogens.

I'm suspicious of persistent gut problems... I've had inconsistent bowel habits and gas (flatulence and belching) since this started up. However, a GI work-up yielded nothing.

[cudBwrong]

A few words of encouragement for Picard. It's very frustrating, and sometimes frightening, not to have a firm diagnosis. You want to find the problem and fix it. I hope that will happen for you soon, but sometimes it takes longer to resolve things. In that case, it helps to be prepared to cope and manage the situation, in a state of incomplete knowledge but with opportunities for at least partial improvements.

You're doing the right things, working with your docs, getting advice here from people who know a lot more than I do.

33 years ago I had many neuro symptoms and no diagnosis. Extensive numbness, tremors, other abnormal signs. Many tests, generally inconclusive. The symptoms gradually disappeared over a period of years with no specific treatment.

The best advice I can give is never to be disappointed by a normal test result. You want a definitive answer, but sometimes things don't work that way. Our knowledge is limited.

Right now you have become your own research project. It's not what you signed up for, but there it is. Keep on being determined and systematic, as you have been doing. Look for things that make a positive difference, however small.

Sleep disturbances can have far reaching consequences. You were receiving a specific treatment for it, I don't know if you are continuing with it. If it seems to help, even a little, you may want to continue that, even if it does not fix the total problem.

Antibiotics can be lifesaving but also very disruptive. It can take a long time to restore balanced flora, even with probiotics.

Time is the common denominator here. Your plans were interrupted, you want to get this over with, but you may have to turn it around and use time to your advantage. it can take time to isolate the effects of different therapies, to see which ones work. it can take time for the body to heal.

There are lots of good people on this forum who are willing to help. Best wishes and good luck.