Inflammation As Cause Of Pots/ans Dysfunction?

[ramakentesh]

We dont have lyme in australia so i cant blame it! But Ive been to the states - but only two years ago when I fighting fit and able, fishing for salmon and drinking beer (ah the good times when im feeling well...).

I dont think its so much a lyme issue, more that lyme seems more likely to set off some sort of long term autoimmune or inflammatory responses in certain people.

Of note, many pateints with other unrelated autoimmune illnesses frequently report that they suffer a crazy amount of allergies and food intolerances. I know because I used to frequent sites for ankylosing spondylitis (which I have) and graves disease (which my mum had)

[issie]

I too have allot of allergies. I've recently been reading about Mast Cell Activation Disorders. It causes a histamine reaction, like an allergy. Many people use different types of allergy medicines for this. I had been using large amounts of Quercetin to suppress this histamine release and ran out. Now, I'm having allergies to everything I'm trying to eat.

As for the antibiotics that caused the colitis. I was on antibiotics for several months for a chronic urinary tract infection that wouldn't go away. (Fresh Parsley tea is the best thing for this.) Then I started having appendix symptoms. Because I didn't have insurance, they wouldn't operate on me. My appendix ruptured and they then gave me massive antibiotics IV. At the same time I got pneumonia. Then because of the IV antibiotics (which in one way probably saved my life) I got the colitis. Long story, short-----I didn't get surgery for the ruptured appendix until 2 years later. At that time the damage was so severe that my chances of getting pregnant were slim to none. Also, at that time they found endometrosis. I was only 23 when all this happened. I wanted Kids. Finally after so many clean ups for scar tissue and endometrosis ---my 8th and final surgery (I hope) was a complete hysterectomy. No Kids!!!

As far as the colitis, that was the most painful and horrible thing of this whole episode. I had to come up with $1,000 to have a colonoscopy. My husband was employed only off and on and I didn't have insurance. Somehow, my husband got a night job and they prepaid him $1,000 and I had my test money. When I had the test done, I was 5 days into a nightmare. The doctor said that I should be dead. Most people die within 2 days of having it as bad as I had it. In his career it was the worst he'd seen. So, I did oral chemo. The pills were $100 each. The first RX didn't stop it. He said we could try one more RX of the same kind and if that didn't work, the pills would be $500. We had no money. The job my husband got, was a blessing for us. He gave them a bid for what those expenses would be and they agreed to his price. The second RX stopped the colitis. I had to be with someone the whole time I was on this medicine. Because (against my knowledge---my husband didn't tell me til later), the medicine could have killed me. Given me a heart attack. I survived through it all. I think the trauma that I went through and some childhood illness that was unexplained, is what caused my POTS. I've had these symptoms for a long time and been searching for answers. As for anitibiotics, I avoid them. I have to be really sick to use them. I do use the olive leaf or collidiol silver and I believe in apple cider vinegar. These and probiotics are my first line of defense. You see why I don't trust doctors and feel I have to educate myself and look after myself. I've had near death experiences, more than once. I feel like its up to me to be my own advocate. I had no help when I was younger and didn't know what to do. I've suffered all my life for ignorance. I'm trying to never let that happen again.

[Noreen]

{{Issie}}

You have certainly been through the wringer and back again.

Thank God everything worked out eventually although not how may have wanted it to and you are here to share your hard won strength.

noreen

[juliegee]

Issie-

I'm so sorry that you went through all of that- without health insurance. What a nightmare, to say the least. I am certain that you have survived for a very special reason.

I never cease to learn from the members of this forum. I had never heard of quercetin before. I just read about it- "Nature's Antihistamine & ant-inflammatory." I was shocked to realize that I consumed massive amounts of this every day. It is heavily found in green tea, which I drink cold (and unsweetened) all day every day. I have felt so much better than when I drank plain water.

Do check into MCAD. I was also on antibiotics for years for a bladder infection that wouldn't go away. It ended up being interstitial cystitis- very common in MCAD patients. You seem to have many of the symptoms. Treating MCAD is fairly simple & has made me much more stable.

So sorry for all you've been through-

Julie

[issie]

Thank you for your support. Life has been a struggle. But, at least now, I know what I'm dealing with. I was so happy to FIANALLY get the POTS and EDS diagnosis. It made everything --make sense. I know there are some finer details that I need clarified, but just knowing what everything has been about all my life, is such a relief.

I do believe the Mast Cell may play a part. I think my mom has this issue too. I feel like allot of the componenets of these illnesses are gentic in nature. I want to get the Zyrtec and whatever else you do to treat for the mast cell and just see if it makes a difference. How do you start out?

[juliegee]

Thank you for your support. Life has been a struggle. But, at least now, I know what I'm dealing with. I was so happy to FIANALLY get the POTS and EDS diagnosis. It made everything --make sense. I know there are some finer details that I need clarified, but just knowing what everything has been about all my life, is such a relief.

I do believe the Mast Cell may play a part. I think my mom has this issue too. I feel like allot of the componenets of these illnesses are gentic in nature. I want to get the Zyrtec and whatever else you do to treat for the mast cell and just see if it makes a difference. How do you start out?

Hey Issie,

Just zyrtec & zantac (ranitidine) both OTC. I belong to a list serve for folks with mast cells disorders and MANY there also have autonomic dysfunctions and connective tissue disorders. Something connects the three.

Julie

[scarfgirl]

Unfortunately, Zyrtec knocks me out. Right now I'm avoiding anything that makes me even slightly dopey in an effort to fend off this nasty case of brain fog, so the zyrtec/zantac thing will have to wait for me. Would Zantac make me sleepy as well?

@Julie - Awww, I really thought that the antibiotics had been helping your son. Sorry to hear that isn't the case.

[ramakentesh]

Sympathetic excess results in increased neuropeptide Y release which has potent effects on inflammation, nitric oxide bioavailability and mast cell release. Inflammatoruy markers in teh blood can sometimes act similarly to histamine??

[lauralulu]

Can anyone give any symptom markers for low-flow vs. high-flow or normal-flow POTS? I really don't think I understand all the mechanisms very well.

Wondering because dizziness, fainting and brain fog are not symptoms for me. Walking is a help to my symptoms. I also think Vit D is a help for me, but still testing that out.

That's interesting, as I've discovered walking helps me too, in a way I think anyway, as I feel better (for a while) whilst I'm walking. For instance this Sunday I got up feeling terrible, really fatigued and exhausted- went out walking, walked about 6 miles, by the end I felt shattered and had a headache, but once I'd eaten I felt much, much better overall.

I've also discovered sitting around/resting if anything make me feel worse, whereas when I am 'on the go' I feel better. Not normal, not 100% or well or anything, but better than when I'm just being inactive.

I guess this high flow/low flow stuff is off the original topic of the thread though, but I just found your remark about walking helping your symptoms interesting and wanted to respond!

[juliegee]

Unfortunately, Zyrtec knocks me out. Right now I'm avoiding anything that makes me even slightly dopey in an effort to fend off this nasty case of brain fog, so the zyrtec/zantac thing will have to wait for me. Would Zantac make me sleepy as well?

@Julie - Awww, I really thought that the antibiotics had been helping your son. Sorry to hear that isn't the case.

KeXia-

Mack had that same reaction to zyrtec. He does fine with claritin instead (another H-1.) I never heard of zantac/ranitidine causing drowsiness.

We may know how much the antibiotics are helping (if at all) when we take him off . If he stays the same, probably didn't help. If he worsens without them, maybe they did....

Thanks for your support-

Julie

[juliegee]

Sympathetic excess results in increased neuropeptide Y release which has potent effects on inflammation, nitric oxide bioavailability and mast cell release. Inflammatoruy markers in teh blood can sometimes act similarly to histamine??

Help me understand, Rama. If your theory is correct, is there a scientific basis for WHY antihistamines help- aside from the dampening effect on the sympathetic nervous system? Non-drowsy H-1's (like zyrtec) can often reverse things for me.

Most importantly, WHY does epinepherine reverse my episodes? If they are truly caused by a sympathetic excess, wouldn't adding more adrenaline flame the fire?

Your theory seems to hold water in that MCAD sufferers experience non IgE mediated symptoms (unlike traditonal allergy sufferers.) Even when I'm covered in hives and all swollen up, my IgE is low....

Thanks for your input.

Julie

[Elegiamore]

Great post, Fire. Thanks!

I have been diagnosed with CFS/ME and POTS. I have low sed rates so nobody thinks I have an inflammation problem, except for the obvious symptoms, which include constant, severe herpes infections and lots of pain. I also have very high homocystine levels, which are signs of inflammation and now considered major heart attack factors.

Recently I went to the U of Miami to see Dr. Nancy Klimas, CFS/ME expert and immunologist. I found out that I have defective natural killer cells that are not fighting viruses. As the bad killer cells do not general white cells when they should, it then appears I have no inflammation. Her advanced, expensive tests found 14 times the normal inflammatory response to viral assaults and extremely high TNF readings - all showing massive inflammation.

Dr. Klimas says she has much proof that the inflammation affects the HPA axis in your brain, which regulates hormones such as aldosterone, which causes you to RETAIN WATER. No aldosterone = low blood volume = sympathetic pickup. More sympathetic response lowers your natural killer cell function and the cycle escalates. She also claims that pain meds for inflammatory pain increase NE, further screwing with this cycle.

So in my case, ME/CFS and POTS are one and the same...an immune dysfunction that manifests itself as POTS.

WARNING: I attempted to reduce my viral load with medication - antivirals did nothing, so Dr. Klimas put me on immune modulators (AIDS type stuff). WHAM - the worst flair up imaginable (see my emergency posts last week) with massive adrenaline releases and the other usual stuff. Apparently it worked, but my body blew a fuse.

Go figure.

In closing, let me state again that approximately 50-70% of ALL ME and CFS patients have some form of POTS (per the national experts). We may wonder what the opposite stats are: how many POTS suffers really have CFS/ME? And would GREATLY improve their POTS with ME treatment? I am willing to share my med records and written explanation from Dr. Klimas if interested - PM me.

[issie]

Great post, Fire. Thanks!

I have been diagnosed with CFS/ME and POTS. I have low sed rates so nobody thinks I have an inflammation problem, except for the obvious symptoms, which include constant, severe herpes infections and lots of pain. I also have very high homocystine levels, which are signs of inflammation and now considered major heart attack factors.

Recently I went to the U of Miami to see Dr. Nancy Klimas, CFS/ME expert and immunologist. I found out that I have defective natural killer cells that are not fighting viruses. As the bad killer cells do not general white cells when they should, it then appears I have no inflammation. Her advanced, expensive tests found 14 times the normal inflammatory response to viral assaults and extremely high TNF readings - all showing massive inflammation.

Dr. Klimas says she has much proof that the inflammation affects the HPA axis in your brain, which regulates hormones such as aldosterone, which causes you to RETAIN WATER. No aldosterone = low blood volume = sympathetic pickup. More sympathetic response lowers your natural killer cell function and the cycle escalates. She also claims that pain meds for inflammatory pain increase NE, further screwing with this cycle.

So in my case, ME/CFS and POTS are one and the same...an immune dysfunction that manifests itself as POTS.

WARNING: I attempted to reduce my viral load with medication - antivirals did nothing, so Dr. Klimas put me on immune modulators (AIDS type stuff). WHAM - the worst flair up imaginable (see my emergency posts last week) with massive adrenaline releases and the other usual stuff. Apparently it worked, but my body blew a fuse.

Go figure.

In closing, let me state again that approximately 50-70% of ALL ME and CFS patients have some form of POTS (per the national experts). We may wonder what the opposite stats are: how many POTS suffers really have CFS/ME? And would GREATLY improve their POTS with ME treatment? I am willing to share my med records and written explanation from Dr. Klimas if interested - PM me.

So are they increasing or decreasing your immune system? (I know, this question is because of ignorance.) One person here, is decreasing her immune system with plasmapherese. I haven't heard how this is working for her. If the NSAIDS increase the inflammation, what do you do? I thought NSAIDS and aspirin was supposed to decrease inflammation. I guess, I'm not totally understanding your DX. For the life of me I can't figure out what ME is. Can you clarify a little more. I think what you have to say is very relative for all of us. I, just need to understand it better.

[firewatcher]

ME=Alternate names for chronic fatigue syndrome (CFS).

Several countries currently call the condition myalgic encephalomyelitis, ME/CFS or CFS/ME. Some experts use the terms interchangeably, while others consider one a subgroup of the other.

In the United States, advocates are working to have the name of CFS officially changed to ME/CFS due to the widespread belief that the name CFS trivializes the condition and leads to misperceptions of it. Disagreement over whether encephalomyelitis or encephalopathy is more accurate led to the decision to push for the simple acronym ME.

Myalgic means muscle pain or tenderness. Encephalomyelitis means inflammation of the brain and spinal cord. Encephalopathy means altered brain function and structure caused by diffuse brain disease.

Pronunciation: Myalgic: my-AL-jik

Encephalomyelitis: en-SEF-uh-lo-MY-uh-LY-tis

Encephalopathy: en-CEF-uh-LOP-uh-thee

Also Known As: CFIDS (chronic fatigue and immune dysfunction syndrome)

[juliegee]

Great post, Fire. Thanks!

I have been diagnosed with CFS/ME and POTS. I have low sed rates so nobody thinks I have an inflammation problem, except for the obvious symptoms, which include constant, severe herpes infections and lots of pain. I also have very high homocystine levels, which are signs of inflammation and now considered major heart attack factors.

Recently I went to the U of Miami to see Dr. Nancy Klimas, CFS/ME expert and immunologist. I found out that I have defective natural killer cells that are not fighting viruses. As the bad killer cells do not general white cells when they should, it then appears I have no inflammation. Her advanced, expensive tests found 14 times the normal inflammatory response to viral assaults and extremely high TNF readings - all showing massive inflammation.

Dr. Klimas says she has much proof that the inflammation affects the HPA axis in your brain, which regulates hormones such as aldosterone, which causes you to RETAIN WATER. No aldosterone = low blood volume = sympathetic pickup. More sympathetic response lowers your natural killer cell function and the cycle escalates. She also claims that pain meds for inflammatory pain increase NE, further screwing with this cycle.

So in my case, ME/CFS and POTS are one and the same...an immune dysfunction that manifests itself as POTS.

WARNING: I attempted to reduce my viral load with medication - antivirals did nothing, so Dr. Klimas put me on immune modulators (AIDS type stuff). WHAM - the worst flair up imaginable (see my emergency posts last week) with massive adrenaline releases and the other usual stuff. Apparently it worked, but my body blew a fuse.

Go figure.

In closing, let me state again that approximately 50-70% of ALL ME and CFS patients have some form of POTS (per the national experts). We may wonder what the opposite stats are: how many POTS suffers really have CFS/ME? And would GREATLY improve their POTS with ME treatment? I am willing to share my med records and written explanation from Dr. Klimas if interested - PM me.

Very interesting. I have every symptom of CFS/ME, but am much improved since my menses stopped and I am taking a bio-identical estrogen and progesterone patch. I no longer retain gallons and gallons of water in my belly (and breasts) every month and I fell so much better...not sure how that related to the aldosterone but certain there is a connection.

I also have a consistently low sed rate & low C-reactive protein AND a very impaired immune system. My IgG is around 500 (normal 750-1500.)

I have heard statistics closer to 90% of CFS/ME patients have dysautonomia. WHAT treatment specifically addresses your CFS/ME?

Thanks-

Julie

[yogini]

Stupid question: How do you know whether you have inflammation in your body? Are there certain symptoms related to it and/or a test?

[Noreen]

I, too, have all the symptoms of CFS and have had for 20 years although the dx I was given then was fibro. Since then other dx which can cause fatigue have been added.

I went on Enbrel the anti-TNF when it first came out and was on it for six years. It did wonders for my fatigue. I stopped it because of increasing migraines and a change in my visual field - symptoms which I now attribute more to the dysautonomia rearing its head as an early 'change' occurred. Your post about your doc's ability to test TNF levels was intriguing and I wondered whether the rheumatics were considered as an alternative to the antivirals.

BTW, I do not endorse the overuse of these drugs and have a problem with the marketing of them for trivial ailments but your CFS is far from this category. On a cautionary note, all is not known yet about these drugs as to the effect on the thymus gland.

Recently I went to the U of Miami to see Dr. Nancy Klimas, CFS/ME expert and immunologist. I found out that I have defective natural killer cells that are not fighting viruses. As the bad killer cells do not general white cells when they should, it then appears I have no inflammation. Her advanced, expensive tests found 14 times the normal inflammatory response to viral assaults and extremely high TNF readings - all showing massive inflammation.

[ramakentesh]

Actually recent work by some researchers suggests that as many as 80% of patients diagnosed with CFS (which is a lose diagnosis of exclusion) have reduced blood flow to the brain on quiet standing.

Recent research by Medow and Stewart found POTS in as many as 80% of CFS patients. Nearly all CFS patients tested had elevated cerebral lactate levels - a cardinal sign of tissue hypoxia - reduced blood flow.

Therefore i think in about five years it will be established that the majority of CFS patients suffere from a disoirder of circulatory regulation or dysautonomia.

Chronic sympathetic activation may prove be account for increased release of inflammatory markers and chronic inflammation. Immune disregulation could be caused by sympathetic excess and increased oxidisivei stress found in POTS rather than the opposite as some CFS researchers suggest.

CFS research is confusing and often poor. The research in POTS and related conditions is usually published in reputable medical journals and while the findings are still confusing, they are slowly finding the primary etiology.

I think most of the symptoms of CFS can be explained by POTS - whereas the symptoms of CFS are ambigious and unclear.

Mack's mom - im just thinking out allowed.

[ramakentesh]

I went on Enbrel the anti-TNF when it first came out and was on it for six years. It did wonders for my fatigue. I stopped it because of increasing migraines and a change in my visual field - symptoms which I now attribute more to the dysautonomia rearing its head as an early 'change' occurred. Your post about your doc's ability to test TNF levels was intriguing and I wondered whether the rheumatics were considered as an alternative to the antivirals.

Interesting - im being offered Humira for Ankylosing Spondylitis and im considering it as long as it doesnt worsen POTS. However perhaps elevated TNF alpha might provide a link between chronic inflammation and disregulation of the autonomic and circulatory system - TNF alpha is a potent vasoconstrictor, neuropeptide Y has vasoactive effects and substance P is a potent vasodilator.

A few people who have taken tnf alpha blockers for other conditions and who have POTS have found that they help perhaps with fatigue

[Elegiamore]

Actually there IS a difference between CFS and M.E., depending on the sources. In my case, I believe ave M.E. for several reasons: I have large entervirus loads (coxsackie), I can tell you the day this happened to me (7/82), and cardiac symptoms are the main issue with me. And I have documented brain stem neuropathy by Mayo Clinic.

http://www.hfme.org/memedicalfacts.htm

Also google Dr. Bryan Hyde in Canada, who has a great book out on this. Next look at the work of Dr. Paul Cheney, one of the original "discovers" of CFS/ME during an apparent epidemic in Nevada in the 80's - he wrote the bible on POTS and left ventricular diastolic failure being the key to CFS/ME. Too bad he wants $8000 cash for one visit and doesn't take insurance, or I would be on his doorstep tomorrow.

Here is my first summary letter from Dr. Klimas to attempt to get me IVs from my cardio:

Ms More has a complex problem underlying her chronic fatiguing condition. Clearly the most pressing is her autonomic dysfunction. Previously she had an evaluation by an excellent autonomies expert, who used a tilt challenge under various therapeutic modalities to discover that clonidine, which stimulates alpha2-adrenergic receptors mediated her autonomic

dysfunction better than other standard treatments.

That was more than a decade ago, and since that time her neurally mediated hypotension and autonomic dysfunction has

transitioned into periods of extreme hypertension. In my clinic I was able to monitor her BP while infusing 500 cc saline, thinking the volume contracted state seen in CFSjME and documented in this patient previously might be inducing vasospasm and reactive hypertension.

She has had episodes thought to be congestive heart failure as well, so this was done with extreme caution. Still the results were gratifying. Her high blood pressure came down with this infusion underscoring the role of volume contraction in her

hypertension.

Our studies also documented poor antiviral cell function, T cell activation and antibody titers to EBV and HHV 6 suggesting viral reactivation. Coxsackie A and B virus titers are also elevated, Dr Chia notes this occurs in his biopsy proven GI reactivation patients.

I prescribed Immunovir, a protein supplement, isoprinosine, known to enhance NK cell function. Because her pro-inflammatory cytokines are elevated, TNF inhibitors are another option, but Immunovir is cost effective and less toxic, so I suggested this first. She tolerated her first week of Immunovir well, but on her second week she developed increasing

dysautonomia, fatigue, increasing htn and eventually a distorted out of focus vision. She lowered to immunovir to once a day but the symptoms persisted, though the visual disturbance did resolve.

She saw her cardiologist who felt she might be volume overloaded (NO-HE NEVER SAID THAT!) and started an ARB, though her BP has remained high.

I also think that cautious use of IV saline in small boluses (e.g. 500 cc) might be useful to prevent volume contraction induced htn, though I do not have her most recent echo and don't know if there is evidence of volume overload at the present time. (NO OVERLOAD!) If she has not had a renal artery ultrasound it would be indicated, given the very high readings and fairly sudden onset of the hypertension.

In the future we will address her non restorative sleep pattern, avoiding medications that would enhance norepinephrine (e.g. daytime stimulants) as her dysautonomia would be negatively impacted.

Nancy K1masMD

Medical Director, Chronic Fatigue Center

Second letter is on the inflammation/immune issues...

Ms More is followed by this clinic for a complex disorder characterized by inflammation and pain. She came to our center to evaluate the role of her immune system in her health problems. We did a number of lab studies that look at immune function, immune activation,inflammatory cytokines, and secondary viral reactivation. We documented poor antiviral cell

function, marked chronic T cell activation and antibody titers to EBV and HHV 6 suggesting viral reactivation. Coxsackie A and B virus titers are also elevated.

This sort of immune dysfunction can be secondary to something driving the ?on? signaling of the immune system ? infection and autoimmunity being the most common. When infection is a cause, it has to be the sort of infection that can persist for years, and some few viruses (HIV, hep C, or B, reactivated EBV, enteroviruses such as coxsackie) are the most common. There are rare cases of lyme that can persist, and a few mycobacteria infections that can do this, though usually in more immunocompromised states. Autoimmune causes include seronegative rheumatoid arthritis.

One of the more striking elevations was the TNF-a receptor levels, which reflect a chronic elevation of the pro-inflammatory cytokine TNF. TNFa is a primary mediator of inflammation in inflammatory rheumatic conditions, but it can also seen in response to chronic infection.

SO the dilemma in this patient is to sort out infection vs. autoimmunity or a mixed picture of some sort. She was started on supplement, immunovir (Isoprinosine) that boosts NK cell function, which should in turn improve antiviral function, without risking kicking up an ongoing autoimmune response.

Because her pro-inflammatory cytokines are elevated, TNF inhibitors are another option. There are some that are less effective but have low toxicity e.g. high dose omega 3, though the most focused treatment would be a drug like Embrel. Ideally a rheumatologist would manage this sort of treatment, as the dose adjustments early in therapy require monitoring and local management.

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

Yes, I have been on NSAIDS (when they don't make me throw up) and they have helped some. The way I know I have inflammation is PAIN, PAIN, PAIN. I have stopped washing my hair more than three times as week, or my right arms hurts so badly that I cannot even turn a door knob. I have such severe pain in my feet that I sometimes cry in public when attempting to walk. Klimas says, however, that the pain meds just INCREASE NE and to attempt not to take them. Easy for her to say...

Reen, you see she mentions Embrel, but now she is gunshy because of my outrageous sickness from the Imunivor. She is downplaying how sick she made me, and I have not recovered after four weeks off of the drug.

Ram - TNF alpha is a potent vasoconstrictor. Whoa. Does this make sense or what? Ram, I personally have no doubt that CFS = POTS and those without POTS have been misdiagnosed, but I don't DARE tell my cardiologist that I have CFS or ME, as that information is what has led to my poor treatment. Including a cardio that fired me when he heard (he said he didn't treat mental patients - disgusting in itself) and one that laughed his head off in my face and asked me to leave his office.

My neurologist smiled and said "what is CFS?" sarcastically when I met him. I then said, "OK, then, I have POTS" which turned our relationship around.

I have a sense of hope now, as Firewalker (God bless her) has helped me find a cardiologist in Atlanta that recognizes the combo of CFS/ME and severe cardiac impairment.

Hope this is of help to some of you. THANK YOU For the wonderful responses to my recent plea of help and the unbelievable kindness from almost strangers I have received.

Elegia

[Noreen]

Interesting - im being offered Humira for Ankylosing Spondylitis and im considering it as long as it doesnt worsen POTS. However perhaps elevated TNF alpha might provide a link between chronic inflammation and disregulation of the autonomic and circulatory system - TNF alpha is a potent vasoconstrictor, neuropeptide Y has vasoactive effects and substance P is a potent vasodilator.

Rama-

the enbrel was taken early in disease course and did protect my bones. At the time there were no recommendations for taking it early but I didn't see a lot of alternatives as my pred dose was reaching as high as 40 mg. Now there is more information available for you to base your decision upon. I think you will find this excerpt from the Journal of Neuroinflammation interesting.

Of particular relevance to intersections between neuroinflammation and neurodegeneration is the ability of TNF to increase expression of interleukin-1 (IL-1), which in turn increases production of the precursors necessary for formation of amyloid plaques, neurofibrillary tangles, and Lewy bodies. More recent data have revealed that TNF, one of the few gliotransmitters, has strikingly acute effects on synaptic physiology. These complex influences on neural health suggest that manipulation of this cytokine might have important impacts on diseases characterized by glial activation, cytokine-mediated neuroinflammation, and synaptic dysfunction.

full journal article

The researchers were working with Alzheimers patients so this article is not going to be everyone's cup of tea.

[ramakentesh]

No i believe that CFS exists, but that its poorly understood, characterised and that there is no agreement on primary causes - anda lot schetchy theories that dont really hold up to much scrutiny.

There are many angles, methylation cycles, immuno disfuction, amyloid proteins in the spinal fluid, neuropeptide Y, glial overactivity, chronic infection, candida, adrenal fatigue, etc but none really explain the majority of cases.

I dont doubt you have high titers and immuno disfunction - but did you know that people with many chronic inflammatory or autoimmune disorders also have paradoxical immune disfunction. Some believe now that autoimmunity occurs when the immune system is poor rather than too zealous.

Im not saying i have the answers but i believe that there is a definate connection between the whole thing - but its unclear yet what that is.