Results of Cytokine Multiplex 18 Report

[Hip]

PhoenixBurger

Checking on Google, there does not seem to be any supplements that reduce IL-2, but the drugs xanthohumol, rapamycin and cyclosporin A all IL-2 inhibitors. However, whether it would be advisable to take these drugs is another question.


Inhibiting IL-17 and Th17

Though the anti-IL-17 and anti-Th17 supplement N-acetylglucosamine is very safe.

In your post, you put IL-17 in the anti-inflammatory group, but I believe IL-17 is in fact pro-inflammatory. IL-17 switches on the Th17 branch of the immune system — a branch which is linked to producing autoimmune effects.

Furthermore, it seems that IL-17 and Th17 are critically involved in immune reconstitution inflammatory syndrome (IRIS): this study found that in IRIS, there is an imbalance in the Treg / Th17 ratio.

The above-cited study says that "immunohistochemistry evaluation of the granulomas showed strong intensity of staining for IL-17 (Th17 response)," meaning that there seems to be high levels of IL-17 and Th17 in IRIS. Your own cytokine profile tests confirm the high levels of IL-17. So my guess is that reducing IL-17 and Th17 would be a good idea.

And this study on the mechanism of IRIS says "Th17 cells, characterized by the production of IL-17 and IL-22, promote potent proinflammatory responses and induce chemokines and metalloproteinases for recruitment of neutrophils for pathogen eradication. Tregs, on the other hand, play a critical role in limiting inflammation and subsequent tissue damage caused by vigorous immune response". So again in IRIS, we see that IL-17 and Th17 appear to be too high.

Thus inhibiting IL-17 and Th17 using the supplement N-acetylglucosamine may well be very beneficial.

This study details the anti-IL-17 and anti-Th17 effects of N-acetylglucosamine.


Anti-Inflammatory Diet and Supplements

Since you say that inflammatory foods make your symptoms worse (which is not surprising if you have the inflammatory condition immune reconstitution inflammatory syndrome), it may be a good idea to also take a range of anti-inflammatory supplements, as well as follow an anti-inflammatory diet. In particular, high doses of probiotics and prebiotics are well advised, as these will significantly reduce gut inflammation. Inflammation would appear to be your enemy here, so you want to combat it in every way possiible.

I wrote two threads on how I used anti-inflammatory supplements to cure my severe anxiety disorder symptoms. I had dire anxiety symptom for many years, but I eventually figured out that my hideously unpleasant anxiety symptom were caused by systemic bodily inflammation and brain inflammation.

Once I adopted several anti-inflammatory interventions, I got dramatically goods results, and these days my anxiety is cured. So I think the same anti-inflammatory supplements that helped me so much may also be beneficial for you. At least this is something you can safely try. My two threads on the anti-inflammatory treatment of anxiety are here:

Completely eliminated my severe anxiety symptoms with three supplements!
Non-Standard Anti-Anxiety Treatment

Just have a look at the supplements used, and consider trying them out. You will probably need to take a good 5 or 10 supplements together to get results.


Long Term Persistent HIV Drug Side Effects

I have just been Googling to see if there were any long-term persistent side effects of the HIV drugs you took. Here is what I found:

Kaletra (a combination of lopinavir and ritonavir):​

​

No persistent side effects found in my Google search.​

​

Combivir (a combination lamivudine and zidovudine):​

​

Lamivudine: "There is evidence that nucleoside analogues may be associated with mitochondrial toxicity leading to potentially serious long-term side effects such as lactic acidosis and disorders of lipid metabolism" ᐞ​

​

The symptoms of lactic acidosis include: nausea, vomiting, hyperventilation, abdominal pain, lethargy, anxiety, severe anemia, hypotension, irregular heart rate, tachycardia.​

​

Efavirenz:​

​

"Spanish researchers found that high plasma efavirenz levels correlated with CNS symptoms even after weeks or months of treatment." ᐞ​

So it seems that efavirenz and lamivudine are the HIV drugs most associated with long-term persistent side effects.

If you want to search more for long-term persistent side effects of all these drugs, THIS is the Google query I used.

 

[PhoenixBurger]

Thanks Hip

In your post, you put IL-17 in the anti-inflammatory group, but I believe IL-17 is in fact pro-inflammatory.

You're dead right. I don't know why its definitely listed under Anti-Inflammatory. The description next to it may indicate a clue. "Th17 (IL-17 and IL-23) affect anti-microbial immunity and produce IL-22, which stimulates cells to produce anti-microbial proteins to clear out microbes. Low Th17 levels leave the host susceptible to infection" So maybe IL-17 by itself is one thing, but IL-17+IL23 (both were high on my result) equals Th17 ... which is anti inflammatory.

------------------

Definitely well versed on all the things HIV meds can do. Its been the focus of my research for 14 months. Unfortunately the mental torment I am in right now centers around the immune function results. As I can see it, there is nothing to indicate that I have an inflammatory reaction going on. All the pro inflammatory markers are normal or low. What I do decipher from the results listed at the top, is that my body is viciously fighting something inside of itself. And in the absence of any relevant viral or bacterial infection, not to mention the sheer duration (14 months) of symptoms, all signs point to cancer. This is my concern at the moment, and inhibiting the immune function would be the worst thing I could possibly do if that is the case. My ANA is normal, SED rate is extremely low, RA negative. I have no markers indicating autoimmune or inflammatory. Only cancer.

Based on my clinical symptoms of bodywide muscle twitching, neuropathy, and lower back pain, the only conclusion I can come up with is Myeloma. While paraneoplastic syndromes are heavily associated with unexplained bodywide fasciculations, Myeloma would be the one exception to this. I don't know why I'm settling on Myeloma as my bloodwork for the most part doesn't indicate it. Maybe just the extreme lower back pain I've had this whole time.

Needless to say I did not sleep well last night, and have been trying desperately to get a discussion with Dr. Rey on the phone, but she is off today. I pretty much have nobody with actual training in this stuff, that I can talk to. I really despise the state of the medical system in this regard. It truly is still 1984. You have to wait a week just to talk to someone. Snail mail correspondence speed. Inefficient and unacceptable. I managed to get an appointment with a hemotologist/oncologist on Monday, so I guess I wait the weekend then try to state my case for a bone marrow biopsy request as well as other things like Light Chain, Monoclonal antibodies, Bence Jones, Immunofixation, etc. These were done unbeknownst to me back in October (minus light chain and bence), but significant time has passed since then.

Stressed isn't even the word. Upset and zero mental peace. Mostly because there is nobody, nowhere, that I can have a discussion with right now.

 

[Hip]

As I can see it, there is nothing to indicate that I have an inflammatory reaction going on. All the pro inflammatory markers are normal or low.

You have very high IL-2 and IL-17, both of which are pro-inflammatory cytokines, so you definitely have something very inflammatory going on.


You seem to show lots of worry and concern: have you considered that you might have anxiety disorder? Have a look at these symptom of anxiety disorder.

 

[PhoenixBurger]

Hip No. I don't have anxiety disorder. Lets stay focused on the medical discussion if possible. I was waiting to see how long it would take you to go that route, given you are in the medical field. Never fails.

Can you point me to where it indicates IL-2 (not IL-2 receptor) is associated with autoimmunity or inflammatory immune response?

As I understand, its low IL-2 (and high IL-2 receptors) which are directly responsible for autoimmunity.

Also, IL-2 is not listed as proinflammatory on this report. IL-2 creates Helper T Cells which are there to fight cancers. And increase Natural Killer cells for the same reason, as I understand it.

You have very high IL-2 and IL-17, both of which are pro-inflammatory cytokines, so you definitely have something very inflammatory going on.

Keep in mind that fighting cancer is an inflammatory process. The question is how do you differentiate between the three possibilities? autoimmune. pathogen. cancer.

 

[Hip]

I obviously touched on a sore spot there. Anxiety disorder is just a suggestion, based on the fact that you painted a picture of yourself in a state of high stress and worry over health issues, and anxiety disorder can certainly cause that. I know this, as I have had anxiety disorder myself, so I know how this can ramp up the level of worry and concern about things. Once I fixed my anxiety disorder, all the things that I worried about no longer seemed like the big deal I had made them into.

I am not in the medical field. Nobody on this website is; pretty much everyone here is a patient.

 

[Hip]

Here is a list of pro-inflammatory cytokines. You see that IL-2 and IL-17 are listed.

Although I believe IL-6 and IL-2 may be more complex, and although they are pro-inflammatory, they can sometimes also act as anti-inflammatories. It's context-dependent.

The Th17 immune response (which IL-17 kicks off) fights certain pathogens, but is also known to cause problems. For example, Th17 seems to promote persistent viral infections and their associated chronic diseases. Ref: 1.

 

[PhoenixBurger]

a state of high stress and worry over health issues, and anxiety disorder can certainly cause that.

So can 14 months of serious health problems.

Maybe one day doctors will figure out that the two are related. Its not a difficult connection to make. Not everybody responds to a possible death sentence with swagger and nonchalance. They shouldn't be expected to. I'd appreciate it if you'd avoid the topic from here forward. Not because you touched on a sore spot. But because it is condescending, as it implies that I am not operating rationally, and because it doesn't help me achieve my goals of understanding my current health situation.

That being said, I appreciate the responses you've given me. It's been the only semblance of an explanation I've come close to, despite a whole industry of experts supposedly available to me, yet whom i can't even have a single conversation with. I like that we are getting into the nitty gritty right now though. We might struggle through it, and repeat some things, but i enjoy this type of discussion either way. Overanalyzing can also be fun. Not just bad.

Regarding the IL's .... if I hadn't swam through a sea of studies last night correlating high IL-2 with cancers like Myeloma, I wouldn't have become worried. With my bodywide twitching, neuropathy, and generalized wasting, three options are on the table: Paranepolastic Malignancies, Multiple Myeloma, and undefined Autoimmunity. Last night I saw endless references to IL-2 and Myeloma. That is what set me off.

1) Fighting cancer is also an inflammatory process, and you would expect to see high pro-inflammatory markers. Yes/No?

2) Do you also see myriads of references to IL-2 elevation in numerous types of cancers? I do. Yes/No? How about IL-2 and Myeloma?

3) My final question was: since inflammatory responses are seen in Cancer, Autoimmunity, and Pathogens, how do we differentiate and identify which one is actually occurring?

Hip

 

[Hip]

I don't know anything about cancer. My knowledge relates to ME/CFS, generalized anxiety disorder, and stuff like how the immune system can create various mental and cognitive symptoms by perturbing brain function.

 

[PhoenixBurger]

Hip So you're giving up on me?

You seemed pretty certain that this was not cancer, but an inflammatory immune situation. How were you able to make that statement if you aren't familiar with cancer?

 

[Hip]

Hip So you're giving up on me?

It seems to be you who is giving up on the suggestions that I provided.

You said you thought you may have IRIS, but after I spent some time looking into the inflammatory mechanisms of IRIS, and suggested a targeted anti-inflammatory approach that might well prove beneficial in treating IRIS inflammation, you appear to have lost interest in this angle.

 

[PhoenixBurger]

Hip Sorry, no. Not at all. Its actually Dr. Rey who is distracting me from that train of thought. She called me back yesterday and was fairly stern about the fact that my immune test functions were "outstanding", and completely healthy and active. Is she comparing me to a CFS patient? I assume so. She said that i "only have mild viral reactivation", [but is she reading the [coxsackie results] wrong? igm is negative, igg is positive]. She says my EBV is past infection, but that I am undergoing an "acute" reactivation. [again, [the results] do not reflect that, and past Labcorp results with the same general numbers called "Past infection with no reactivation"]. The only test result which makes any sense is CMV, which has positive IGM that have slowly gone down, as I have begun to feel better.

Despite our hour long discussion about HIV meds causing IRIS in HIV negative individuals a month ago, and the statement she made "you may be swimming in cytokines and natural killer cells" as a result of IRIS ..... she makes no mention of IRIS now. Only Coxsackie. And EBV. And CMV. My results seem to reflect that I *am* swimming in Cytokines and Natural Killer Cells (mildly) but viral reactivation (mild) is the only topic of discussion. [Natural Killer Cells (CD3-CD56+) - 297 (range 98-294)]

This is why i went the "cancer" route. Because she isn't acknowledging any autoimmunity possibility, and I sure don't see any relevant viral reactivations. So I was left to think that my body is fighting something viciously. If not a virus, then I thought surely it must be a cancer.

Despite Coxsackie showing only positive IGG, she wants me to take Equilibrant, which is an immune boosting supplement. Despite having told her that immune boosters only make me 10 times worse. I was willing to suffer the supposed "herxing" (side effects?) if I knew I had an active Coxsackie infection, but I can't get a firm yes or no on that from a 2nd party. There is a warning on the Equilibrant site that people dealing with inflammatory immune conditions or autoimmunity should avoid it. So you see the quandry I am in. Unfortunately I can't get a word in edgewise when I spoke to her on the phone, and she sounded frustrated with me, so I just stayed quiet and let her go.

I wonder where the IRIS discussion went. I wonder if the immune results actually indicated it wasn't inflammatory immune syndrome. She hasn't articulated that to me, but that would be helpful to hear. I took the Equilibrant for 2 days and it was the worst idea ever. I felt so horrible. I immediately reverted back to 6 months ago when i was in the "acute" stage of whatever this is. My theory is that my immune system was going haywire back then. The symptoms i felt at that time, all came back in 2 days on equilibrant. Just like every other time I've taken immune boosters like [ProBoost with Thymic Protein]. I should note - unexplained bodywide twitching is a form of Neuromyotonia, which is often related to Thymoma (cancer). When I took proboost, a Thymic stimulator, my twitching quadrupled in 30 minutes. Coincidence? Indicator of Thymoma?

When I calm my immune system, things get better. When i reduce inflammation, avoid stress, inflammatory foods and gluten /immune triggers, i begin to recover. 2 days of Equilibrant has set me back 3 months. I believe maybe it triggered more immune activity, which triggered more immune related symptoms. I don't know. Some will claim "herxing" but I am certain most people can't tell the difference between a herx and a side effect. So that's my current situation. Cancer is still in the back of my mind, but I've received no real clear answers from this process.

One thing is for sure: I now have proof that my immune system is not "Sluggish" ...

So how can anyone claim that it has taken me 14 months to clear something a six year old clears in 4-6 weeks? (Coxsackie).

How can anyone tell me its taken me over 8 months to clear something a child clears in 1 month (CMV).

It seems far more likely that I have felt terrible because my immune system is the culprit. Clearly its not underactive.

And if these viruses are still here and replicating, why are all my PCR tests negative?

I would be far more willing to believe that these infections are old infections that my immune system is now responding to with an exaggerated reaction, even though they themselves are not reactivating at all. This is the very definition of Paradoxical IRIS.


http://www.ncbi.nlm.nih.gov/pubmed/23285453

IRIS is an inflammatory reaction which occurs due to the exuberant immune responses to occult, or apparent opportunistic infections.
Exaggerated immune response to existing pathogens. Not viral reactivation.
The hallmark of the syndrome is the paradoxical worsening of an *existing* infection.
Or the appearance of a new infection or a disease process, soon after the initiation of the antiretroviral therapy.

Two Forms of IRIS (i may be wrong about this):

1) The immune system has a temper tantrum on pathogens it is already successfully suppressing. Pathogens it has already conquered. I assume this means creation of cytokines and possibly even IGM antibodies, with negative PCR results. Because there is no actual reactivation occurring. Just an exaggerated immune response to existing pathogens.

2) The immune system crashes and restores, resulting in the true reactivation of past viruses. They begin new activity and the immune system has a difficult time suppressing them all at once. This might explain why it takes months and months to resolve things that took only weeks the first time around. In this case, treating the virus is suggested. However only CMV shows any sign of actual reactivation.

Maybe there's another virus we don't even know about, or maybe another 10 of them which have reactivated ... and that's why I feel terrible. Shoot, maybe an entire lifetime of past viruses have reactivated in me.... But they're just not on the "blood test" radar. Or maybe this is simply a cancer.

-----------------------------------
Other Results from the Labs

CD4+CD38+ HIGH
CD8+CD38+ LOW
CD8+CD28+ HIGH

She labeled the three above "VIRAL REACTIVATION".

CD2+CD26+ LOW
CD8+CD26+ LOW
CD8+CD95+ LOW

CD4 Ancuor CD45RA-CD62L+ HIGH

 

[Hip]

I think the immune reconstitution inflammatory syndrome (IRIS) theory of your symptoms is a good one that makes sense. You did not say whether the IRIS theory was your own one, or suggested to you by one of your doctors, but in any case, the IRIS theory of your symptoms seems like a good hypothesis to test and work on.

I am suggesting the we need to move forward, and you actually need to start taking some of the anti-inflammatory supplements that I have a hunch will help calm the IRIS that you may well have, and lead your body back towards normal health.

Even if you do not have IRIS, the fact that you felt much better on an anti-inflammatory diet should suggest to you that you need to pursue the anti-inflammatory approach in more depth. This is just what your own intuition will tell you. Even in cancer, the anti-inflammatory is useful and generally desirable. In fact, anti-inflammatory drugs often help protect against cancer. Ref: here.

You sometimes need to intuitively feel your way forward, by sensing yourself what makes you feel better and what makes you feel worse. You have already done this, by intuitively sensing that anti-inflammatory diets improve your symptoms. But now we need to capitalize on that intuitive finding of yours, and see if you symptoms further improve when you take anti-inflammatory supplements as well as an anti-inflammatory diet. You need to try treatments out, otherwise there is little point is discussing these things. Doctors are very useful, but sometimes you can make more progress on you own by simply trying out supplements on spec, and following a combination of your own intuition, and a bit of your own analysis. In other words, use both the right (intuitive), and the left (analytical), side of your brain to move forward with your health issues.

Take your cue from the way ME/CFS patients here are always very willing and eager to try out a supplement or drug on spec, in the hope that it will improve their situation. You need to try supplements out sometimes, just to see if they help. Of course, if a supplement or drug makes you feel worse, then you can stop taking it.

Though even if a supplement does makes you feel worse, this fact in itself can be very valuable information, so nothing is lost, even in this case, provided you are prepared to think and research about why you had a bad reaction from a supplement. You can actually think of a supplement or drug as a "test probe" into your condition: if you feel better — or worse — when taking that supplement or drug, that info can give you a valuable insight into your illness.

A case in point is you immediate worsening of symptoms when taking oxymatrine (Equilibrant). This is useful information. I think this response you had to oxymatrine may support the IRIS theory for your symptoms, as the following explains.

Normally oxymatrine does in fact make ME/CFS patients feel much worse before they get better, and feeling much worse is a good sign (at least for ME/CFS patients), as Dr John Chia found that the patients who felt much worse on oxymatrine were the ones that ultimately would benefit from it the most. However, I believe it takes several weeks on oxymatrine before the time of feeling worse arrives. In your case, you felt worse immediately, which I don't think is the normal response, and to my mind suggests something different is going on — something that supports the IRIS theory. Bear with me here, and I will explain.

Oxymatrine is not in fact an immune system booster, but rather is thought to be an immunomodulator. An immunomodulator is a supplement or drug that does not boost the immune system, but changes the focus of attack of the immune system. That is to say, an immunomodulator like oxymatrine changes which branch of the immune system is active, and which branch is dormant. Two well-known branches of the immune system are the Th1 and Th2 branches. The Th1 branch of the immune system is designed to attack microbes that live within human cells (like viruses and certain bacteria), and Th2 branch is designed to attack microbes that live outside of human cells, in the tissues (like most bacteria). What oxymatrine does is switch the focus of attack of the immune system from Th2 to Th1. In ME/CFS patients, the Th1 response is weak and the Th2 response too strong, which is why oxymatrine can be helpful in ME/CFS.

So why did oxymatrine make you feel much worse so quickly? Well, if we assume that cytomegalovirus is the target microbe that your IRIS focuses on (which makes sense given your high CMV titers), then clearly you will already have an overactive Th1 response (because the Th1 branch is used to fight viruses like cytomegalovirus). So taking oxymatrine will have even further increased your already overactive Th1 immune response, thereby making you feel worse. So in hindsight, we know oxymatrine is not a good idea for you; but nevertheless, we have learnt something from your experience with oxymatrine: it tends to support the IRIS theory.

Incidentally, the usual target microbes of IRIS tend to be: ophthalmic cytomegalovirus disease, disseminated infection with Mycobacterium tuberculosis or Mycobacterium avium complex, and central nervous system involvement with Cryptococcus neoformans. Ref: here. So the fact that you have high titers to cytomegalovirus tends to support the IRIS theory.


Anyway, enough words; it is time for action. Go out and buy some anti-inflammatory supplements, and start taking them, and see if they further improve your condition.

I suggest start by taking N-acetylglucosamine (NAG) 750 mg twice daily, and see how you feel. The reasons for taking NAG for IRIS were given in my above posts (basically, in IRIS, the Th17 branch of the immune system seems to be overactivated, and NAG reduces the overactivation of Th17). Of course, if you feel worse on NAG, then stop. You always need to be on the lookout for worsening symptoms when you try any new supplement, and be prepared to stop taking it if symptoms worsen.

N-acetylglucosamine also seems to have an anti-cytomegalovirus action (it inhibits viral infectivity), so it should be particularly useful for you, for more than one reason. Ref: here.

You can buy NAG online. See HERE. The Jarrow brand of NAG is good.

Since you appear to have viral IRIS, you should probably avoid corticosteroids, as per the advice in this study.

Though I suspect that non-steroidal anti-inflammatory drugs (NSAIDs) will be of benefit to you. There are several potent herbal NSAID COX-2 inhibitor herbs that you should try, such as the following:

Potent COX-2 inhibitor herbs:

Rhodiola rosea 500 mg
Rosemary (rosmanol) 1000 mg
Curcumin 1000 mg
Propolis 3000 mg
Boswellia serrata extract 300 mg
EGCG green tea extract 300 mg
Terminalia chebula 1000 mg
Holy basil (tulsi) 1000 mg

So I suggest you get on with testing out these anti-inflammatories, and seeing if they do indeed make you better.

 

[PhoenixBurger]

ResI think the immune reconstitution inflammatory syndrome (IRIS) theory of your symptoms is a good one that makes sense. You did not say whether the IRIS theory was your own one, or suggested to you by one of your doctors, but in any case, the IRIS theory of your symptoms seems like a good hypothesis to test and work on.

I agree with you, but Dr. Rey does not seem to think so. She has stated very clearly to me "What are you worrying about? You have mild viral reactivation. Your immune system has mild elevation of cytokines. They will settle down when you handle the viruses". My fear in going to the Klimas clinic was that they are looking for viruses, and that this might cloud the diagnosis. My fear now is that my fears have been confirmed. Just like posting on this site, I feel a little out of place in her clinic, because I know I don't have CFS nor a struggling immune system. But I went there, like I come here, because I wanted to be around smart people who might help. They are the best neuro-immune doctors in south florida, but the entire focus seems to be on Infectious Disease. No matter what. The IRIS theory was mine, after having gotten in touch with others who took HIV Prophylaxis and became very sick for months, and years afterwards. Nearly all developed inflammatory immune conditions like Sarcoidosis, GBS, and CIDP. Dr. Rey was the first out of 15 doctors to acknowledge that IRIS was possible in my situation, while all the rest cite studies stating one must be immunocompromised with a CD4 level below 260 (ish) in order for IRIS to occur.

I am suggesting the we need to move forward, and you actually need to start taking some of the anti-inflammatory supplements that I have a hunch will help calm the IRIS that you may well have, and lead your body back towards normal health.

I hear you loud and clear Hip. I'm not ignoring. In fact it has been me who has been pursuing anti-inflammatory techniques for the last 6 months already, as well as promoting this with various doctors, as they laughed at me. I have investigated turmeric, quercetin (as it has cytokine calming effects), dietary changes, stress mitigation, the benefits of exercise on reducing cytokines, dead sea salt baths with bromide which is a CNS sedative, Gatorade when it still had bromelain, pineapples for the same reason, and even tart cherry juice. You can google all of these with the suffix "anti inflammatory" to see how they all play a role. And I have been actively pursuing them already for months with overall improvement. My Cytomegalovirus IGM levels have also, during this time, gone from very high, to just above "positive", in direct correlation to my fatigue going away, etc. So you see there *is* some overlap here with Rey's theories. She feels this is an issue of viral reactivation and subsequent cytokine inflammation. But she and I may have a disconnect when it comes to how to handle this. Equlilibrant will further inflame those cytokines and bring on a "cytokine storm", but she feels this is necessary to clear the Coxsackie. I am of the opinion that my only problem *is* the cytokines. Just like you are theorizing. I appreciate all the research you did on my behalf in this thread, and you can be 1,000% assured that your suggestions are going to be my next step. I am just concerned that I am wrong. And that my cytokines are indeed high because of viral or cancer activity, and reducing them may prolong this, or cause me damage.

So once again, the million dollar question is: Are my cytokines out of whack because of inflammatory immune syndrome, viral reactivation, or a cancer? The answer to this is will result in *very* different types of treatments. If I pick the wrong one, I damage myself. Suppress my immune system while its trying to fight a cancer, and you have a problem on your hands. Same with viruses. Boost my immune system when its developing autoimmunity, and you have a problem on your hands. See the problem? I guess I just wish I was having this discussion with my doctor, who is a trained neuro immunologist. But as I mentioned, I have become somewhat intimidated, and I can't seem to convey my thoughts, or get a word in edgewise during discussions now. Its frustrating. I can sense that I truly am perceived as the paranoid hypochondriac civilian without the medical degree in the conversation, and that is a feeling I utterly hate...

But now we need to capitalize on that intuitive finding of yours, and see if you symptoms further improve when you take anti-inflammatory supplements

Fair enough. I feel like I gave the Equlibrant a try, and had the expected response. You should know that I tried Quercetin and had an incredible "calm" come over my entire body after taking it. It was the only thing which caused an immediate and positive reaction. The "peace" i felt mentally and physically was astounding, and as per Google searches, it inhibits cytokine activity. I quickly suggested this to another individual in my situation. We both began it, however after a week, we both developed muscle pain, and nerve damage symptoms again. Stabbing, and myopathy. It was determined that Quercetin was doing something well, but there was another element of it which was making things bad. I also tried Curcumin. Unfortunately I have had allergies to things like food colorings and strong spices in the past, so i actually felt somewhat inflamed on Curcumin. It was disappointing, because its obviously a potent anti-inflammatory. My skin felt strange and itchy while on it, after just a dose or two.

You need to try supplements out sometimes, just to see if they help

I will. Believe me I will. I have a meeting with my doctor on Wednesday to discuss this a little further, and I have an appointment with an Oncologist tomorrow morning, to rule out some paraneoplastic causes of this bodywide muscle twitching, and run some myeloma diagnostics for good measure. Once I am past all of that, I am fairly certain I will feel 100% on my own, without any better understanding of what is going on. Because that's what happens when I go to doctors. Why? Because they don't have the ability to sit down like we are, and actually have a conversation like we are having. Even with a solid hour in the office, I cant squash 14 months of research, viewpoints, discussions with others, and hypothesis into 60 minutes and make a convincing argument. And even when that 60 minutes is done, to figure out a mystery like this would require ongoing thought, experimenting, and researching. Talking and considering things. But as with every other doctor, when I walk out that door, the thinking ends. And I am on my own again. Its just insufficient. Someone needs to start an institute dedicated solely to researching people's conditions. A bunch of interns or med students maybe, who sit there for 3 weeks and actually pour the time and effort into something, then produce theories and suggestions. Without that, I quite honestly don't know how anybody will find answers. Yet we are discouraged from doing the research ourselves. Lose lose situation.

As a side note: Quercetin apparently inhibits what they call "pro-inflammatory cytokines" and I keep seeing IL-6 listed there. I am not elevated on 6 nor the other "traditionally" pro-inflammatory ones. In fact, my IL6 is so low, its almost off the charts low. Maybe this is why my Dr. isn't discussing IRIS with me. I've read your comments regarding 17. That's next on my radar. Who knows, maybe my IL-6 and other pro inflammatories are low because I have been juicing quercetin-rich veggies and fruits for the last 6 months daily. Maybe i need to focus on the others now. Wish it wasn't a blind guess. See here, interesting: http://www.ncbi.nlm.nih.gov/pubmed/21282043

Regarding IL-2, here's an interesting one: http://www.ncbi.nlm.nih.gov/pubmed/18468581
Regarding IL-17, check this out: http://www.ncbi.nlm.nih.gov/pubmed/21092705
(i am high on 17 and low on 10 ... so read the above "Results" paragraph w that in mind)

 

[Sushi]

PhoenixBurger

You might also want to check out berberine.

Sushi

 

[Hip]

Quercetin and had an incredible "calm" come over my entire body after taking it. It was the only thing which caused an immediate and positive reaction. The "peace" i felt mentally and physically was astounding,

Quercetin is an anti-inflammatory that suppresses COX-2 mediated inflammation. If you had good effects from quercetin, you ought to try the other COX-2 anti-inflammatories I listed above. Try bee propolis, up to 5000 mg a day. Propolis is a quite potent inhibitor of the COX-2 immune response.

Though as the link you provided says, quercetin also reduces IL-2, so this may well be the reason that quercetin makes you feel better, given that you have high IL-2 levels.

And the other link you provided says that quercetin reduces the activity of the Th17 branch of the immune system, and since you have high IL-17 and Th17, this may be another reason why quercetin helps. If so, N-acetylglucosamine (which also reduces Th17) should help you too.

Are my cytokines out of whack because of inflammatory immune syndrome, viral reactivation, or a cancer? The answer to this is will result in *very* different types of treatments. If I pick the wrong one, I damage myself. Suppress my immune system while its trying to fight a cancer, and you have a problem on your hands. Same with viruses. Boost my immune system when its developing autoimmunity, and you have a problem on your hands. See the problem?

This general assumption that "boosting the immune system" fights cancer, and "suppressing the immune system" allows cancer to grow is a bit too simplistic. Sometimes suppressing certain parts of the immune system helps fight cancer, believe it or not.

In the case of supplements that inhibit COX-2 inflammation, thereby suppressing the COX-2 immune response, these supplements actually help prevent certain types of cancer, such as colon cancer. Ref: here.

The immune system has many parts and subsystems, so the black and white concepts of "boosting the immune system" or "suppressing the immune system" are really too vague. In reality, the boosting or suppressing of the immune system that certain supplements or drugs achieve only affects specific subsystems of the immune system.

In general, if cancer is a concern, when you are about to take an anti-inflammatory supplement that suppresses a certain subsystem of the immune system, you can check on Google if inhibiting that subsystem is good or bad for cancer.



Toxins From Mold

Don't forget to keep working on the mold toxin hypothesis for your symptoms.

I found this study which says that satratoxin (a type of mold toxin) significantly increases levels of IL-2. Furthermore, this webpage (owned by Dr Ritchie Shoemaker, an expert in mold illness), says that an imbalance in the ratio Th17 / T reg is found in mold illness.

So it is very possible that your high IL-2 and high Th17 are in fact due to mold toxin exposure.

Have you ever thought of taking a vacation away from your moldy condo, just to see if your symptoms improve? That fact that you said all your symptom began as soon as you moved into that condo does tend to support the mold toxin hypothesis for your illness. It would be really tragic if all your symptom were in fact simply caused by your moldy apartment, but because you never took a break away from your apartment, you were never able to check on this possibility.

 

[Hip]

You should know that I tried Quercetin and had an incredible "calm" come over my entire body after taking it. It was the only thing which caused an immediate and positive reaction. The "peace" i felt mentally and physically was astounding.

I know you said above that you don't want to talk about anxiety symptoms, because you feel such discussion is giving you the brush off, and dismissing your symptoms. However, this is not the case at all, at least as far as I am concerned.

When I talk about anxiety, far from dismissing your symptoms, it is the reverse: I think if you do have some anxiety, this in fact confirms that you have something wrong with your bodily health, that is to say, it convinces me you do have a significant illness.

In other words, I take all your symptoms seriously, and I think they could well be caused by excessive inflammation triggered by mold toxin exposure, or by IRIS (or even both). But excessive inflammation in the body can also create a state of anxiety in the brain, and in this respect, anxiety can be just another symptom, added to your list of physical symptoms. It is not uncommon to have both physical and mental symptoms in an illness. Both depression and anxiety symptoms often arise in many physical illnesses, including ME/CFS.

I know this all too well myself: I caught a nasty virus that produced a strong inflammatory response in my body, and precipitated all sorts of physical symptoms. But in addition to the physical symptoms, this virus also caused a severe anxiety state in my mind, due to the biochemical changes the virus caused in my brain. There was no external cause for my anxiety, other that the biochemical, inflammatory changes that the virus created in my brain. This virus-induced anxiety was a hideous experience for me, that went on for years. Really, it was so bad I just wanted to die.

After years of suffering, I finally managed to cure my anxiety by means of the anti-inflammatory supplements I detailed on this thread. Ever since then, whenever I come across someone online who appears to be suffering from biochemically-induced anxiety symptoms, I try my best to help, as I know how awful severe anxiety can be.

After taking quercetin, you said "the peace i felt mentally and physically was astounding". If by that you mean that quercetin made you fell much calmer and much more relaxed, then it does suggest the possibility that the anti-inflammatory effects of quercetin are calming some anxiety symptoms that the inflammation in your body and brain is creating.

So let me reiterate: if you do indeed have anxiety symptoms, that does not mean that all your other symptoms are not real. Quite the reverse: if you have anxiety, it means you definitely have something wrong with your health, most likely an inflammatory condition.

Anyway, the practical upshot of all this is that if quercetin gave you great mental and physical peace, other anti-inflammatories might also help in this area.

 

[Hip]

Just by coincidence, I was reading about a drug called pentoxifylline, which is a potent IL-2 inhibitor. So this might be good for you. And if you are concerned that pentoxifylline might impede the anti-cancer response, this study in fact found that it does not.

 

[PhoenixBurger]

1) The calm and peace I was referring to was physical. Not mental or emotional. I have experienced nothing but physical inflammation, agitation, and tension from an outside source since this began. That's the best description I can come up with. It was 100% external from my own doing. Inflammation in my brain, spine, muscles.... lungs, skin, etc. The calm I felt from Quercetin was a sensation similar to taking an Excedrine after a severe migraine. That sudden moment where you feel just complete and utter "release" physically, as the pain is gone.

2) In your response I don't see that you noted the problem I had with Quercetin. After several days on it, my symptoms got notably worse. The same happened with the friend I suggested it to. An initial calming of symptoms, followed by pains everywhere, in joints, stabbing pains, etc. We both decided to stop the Quercetin as a result. It was a *different* sensation than prior to Quercetin, which had absolutely calmed things. But it was worse than before. In a different way.

3) I felt the most benefit from Quercetin back when things were really bad. Back when I would wake up to urinate and would stand there half awake with my lips and muscles just vibrating. Quivering in tremor. I often felt like I was on the verge of seizure. My brain wasn't in a good place. It was during this time that Quercetin did something beneficial. However when I take it today, I feel no real change. Maybe because I have come such a long way from those days (in December). My system is much more calm.

4) I spoke to my oncologist yesterday and I must say - he has been the most helpful doctor out of all the doctors I have seen. As a result, i will say his name for the record. Israel Wiznitzer. He's a UMiami in Plantation, FL. I have never had a doctor sit there for 45 minutes and explore thought experiments with me like this man did. He asked me every question in the book, even though he felt immediately that cancer was not on the table "Because it likely would have shown itself by now in bloodwork". Nevertheless, he accepted the challenge of trying to figure out what might be going on with me, and put real effort into exploring ideas. Syndromes less likely. Obscure possibilities. And consequently ordering bloodwork for each and every one of them. Something I have never seen any other doctor bother to do. He is still checking for myeloma, thymoma, and generalized blood diseases and cancers. But he's also checking for several other things I had never heard of. I walked out of there with an MRI order, and 26 blood panels to be done by the lab. For the first time, I feel like someone is putting some effort into helping me figure this out.

Will update later. Hip

 

[Hip]

In your response I don't see that you noted the problem I had with Quercetin. After several days on it, my symptoms got notably worse. The same happened with the friend I suggested it to. An initial calming of symptoms, followed by pains everywhere, in joints, stabbing pains, etc. We both decided to stop the Quercetin as a result. It was a *different* sensation than prior to Quercetin, which had absolutely calmed things. But it was worse than before. In a different way.

I did note it, but I could not come up with a theory to explain it.

Quercetin does have a longer half life than most supplements: 24 hours. (That is, 24 hours for half the dose you take to leave your body, and then another 24 hours for half of the remaining 50% to leave your body, and so on). This means that you can get some buildup of quercetin in your body if you take it every day, and you will get higher levels of quercetin in your blood than you might have expected. Most supplements have a half life of typically around 4 to 8 hours, so are out of your system quicker. Whether a build-up effect leading to too high a level of quercetin might explain why you started to feel worse after a few days taking it, I don't know. It is a possibility, I guess.

Quercetin acts in similar way to caffeine as an adenosine antagonist, so too much quercetin may lead to overstimulation, like drinking too much coffee.

I felt the most benefit from Quercetin back when things were really bad. Back when I would wake up to urinate and would stand there half awake with my lips and muscles just vibrating. Quivering in tremor. I often felt like I was on the verge of seizure. My brain wasn't in a good place. It was during this time that Quercetin did something beneficial. However when I take it today, I feel no real change. Maybe because I have come such a long way from those days (in December). My system is much more calm.

Quercetin is also an antihistamine, and antihistamines can reduce muscle twitching. That may be the mechanism of the beneficial effects. You might therefore want to try a pharmaceutical antihistamine, such as cetirizine.

4) I spoke to my oncologist yesterday and I must say - he has been the most helpful doctor out of all the doctors I have seen. As a result, i will say his name for the record. Israel Wiznitzer. He's a UMiami in Plantation, FL. I have never had a doctor sit there for 45 minutes and explore thought experiments with me like this man did. He asked me every question in the book, even though he felt immediately that cancer was not on the table "Because it likely would have shown itself by now in bloodwork". Nevertheless, he accepted the challenge of trying to figure out what might be going on with me, and put real effort into exploring ideas. Syndromes less likely. Obscure possibilities. And consequently ordering bloodwork for each and every one of them. Something I have never seen any other doctor bother to do. He is still checking for myeloma, thymoma, and generalized blood diseases and cancers. But he's also checking for several other things I had never heard of. I walked out of there with an MRI order, and 26 blood panels to be done by the lab. For the first time, I feel like someone is putting some effort into helping me figure this out.

Pleased you have found doctor who is interested in probing your symptoms. Some doctors are like that: they like the challenge of looking into obscure mystery symptoms. It's down to personality. Not everybody has the type of mind that can solve these lateral thinking problems.

 

[PhoenixBurger]

I have a feeling (as long as Hip has the stamina for it at least) that this thread may go on forever. And I am enjoying it. Maybe a solution will be found by the time we hit page 27. I hope everyone who is a member of this site doesn't mind my intrusion here. I guess technically we all have something "unexplained" going on.

Hip one thing I wanted to clarify - that my problems did not start when I moved into this condo. They started 7 months prior while on the meds, and did their first "evolution" into sensory issues and fatigue and myopathy immediately after the meds. It wasn't until I moved into the condo (coincidentally or not) that they again transitioned into something more severe. I think you mentioned maybe the meds affecting my physiology, which subsequently caused dysfunction, in the presence of mold. That may be a valid theory for sure. But just wanted to clarify that my body was a mess long before I moved in here. I remember 4 months prior, physically unable to go to dinner with friends because of how horrible I felt. Losing lots of weight for no known reason, etc etc.

Regarding the mold:

1) A lot of people live in this building, and I would expect a lot of people would be sick from it by now.

2) Granted, its one of those "snowbird" condo towers in Miami where many just own, and don't stay here year round.

3) I have lived in two units here, and the water has the same issue, thoguh when I reported it to Management, they said it was merely the pea-traps needing replacement.

4) Yes I could get the water tested. Probably should. Will look into it.

5) They spray pesticides throughout the building once a month. This has also been a topic of interest for me.