Stanford University pages on infectious cause of CFS

[nord]

Although not directly relevant to rheumatic disease, interesting pages about chronic infection as cause of chronic fatigue, and even more interesting that the perspective gets attention.

http://chronicfatigue.stanford.edu/

[gordbentley]

I find this interesting however, after i was diagnosed with lead poisoning and i was chelated my chronic fatigue left me for good and never came back. 😀

[nord]

Hello,

congratulations to hitting the nail and having it done with one blow!

Yes, metal hypersensitivity seems another source of chronic illness (I’ve posted about Melisa, their page on CFS http://www.melisa.org/chronic-fatigue.php). Metal poisoning/hypersensitivity seems possible both be a single cause as well as hampering the immune system allowing for pathogens to cause chronic illness.

[gordbentley]

yah it was the metal poisoning which messed my immune system and made me sick. I was a steel fitter and pipe fitter for 4 years. i used to cover my hands in lead pipe dope and smoke 2 packs of ciggarettes a day and eat my lunch with lead covered hands. how smart does that sound? definitley have cleaned up my act. kicking myself repeatedly for feeling invincible 😛 heavy metals caused me to have food sensitivities (now gone), cfs (now gone), and a nasty stomach bug which i thought was cleared 3 years ago but has now come back in the form of arthritis. i now eat nothing but natural foods. wear a niosh mask rated for asbestos when im renovating, and take mino everyday. its a slow process but ive gotten lots better. i think everyone who has these ilnesses needs to look at heavy metals. lead soldering in your house can make you sick and mess your immune system. vaccines contain mercury as well as amalgram fillings in your teeth.

[Parisa]

The year or so before my husband became sick he ate tuna almost every day for lunch in his effort to reduce his cholesterol. After he became sick, we had his mercury levels tested and they were high. I’m sure it was one of the contributing factors in his disease.

[Maz]

This is a really interesting topic….one thing they’ve found with MSers is that they have a high concentration of iron in the brain due to venous stenosis causing backflow of blood to the brain. This leaves iron-rich blood pooling in the brain that becomes toxic and leaks past the blood-brain barrier into the spinal canal causing nerve damage. Meanwhile, the toxic levels of iron in the brain is what causes the chronic fatigue and brain fog. The new CCSVI (chronic cerebral spinal venous insufficiency) procedure to open stenosed veins and create better blood flow in MSers is working miracles in many.

Question remains, what causes the venous stenosis in the first place? What if, like heart disease and sclerosed arteries, an infection is causing inflammation in the veins leading from the brain in MSers (and others with chronic fatigue symptoms) and causing them to crinkle up and prevent adequate blood flow?

http://circ.ahajournals.org/cgi/content/full/96/2/404

Could this be why minocycline works for neurodegenerative diseases like MS, too? The tetracyclines are highly chelative, binding to minerals, like iron, in the body. What if, therefore, minocycline was effective both for its chelative abilities and its anti-microbial props in all AI diseases in which inflammation may be causing chronic fatigue and brain fog?

http://mssociety.ca/en/releases/nr_20071025_faq.htm

I put this question to the interventional radiologist my brother saw when he received his CCSVI in Jan for his MS. The doctor said he was very interested in studying whether chronic fatigue patients also had these stenosed veins, similar to MSers. MSers can’t stand heat or being in the sun, much like those with lupus – well, if blood is pooling in the brain and unable to escape, then it would make anyone feel pretty heady…could other AI diseases have this same issue? Hopefully, researchers will make these kinds of connections soon!

My layman’s guess is that bugs thrive in mineral and cholesterol-rich environments and sequester these nutrients for themselves….what a perfect surival strategy for such bugs to create inflam in blood vessels to bring cholesterol to themselves (because the body causes cholesterol to rush to damaged arteries to act as bandaids) or to cause venous stenosis in what better venue than the brain, a naturally cholesterol-rich environment that is also iron-rich? Maybe it’s little wonder that chelation works for chronic fatigue, if so…but what of the bugs causing the problem in the first instance? Maybe the perfect protocol for an MSer or anyone with an “AI” disease and chronic fatigue is minocycline, CCSVI and chelation?

[lynnie_sydney]

My layman’s guess is that bugs thrive in mineral and cholesterol-rich environments and sequester these nutrients for themselves….

And possibly why some (though not all) LLMD’s dont recommend supplementing with magnesium and calcium. It’s a double edged sword really……e.g. symptoms from magnesium deficiency (tremors, severe muscle aches, restless legs etc) and the thought that too much magnesium will feeds the bugs. I know magnesium supplementation (oral and topical) was the only thing that fixed my very severe muscle aches post my liver crisis (now said to be a Lyme response in my liver). There was an interesting discussion on this topic initiated by fkendall (Frances) some time ago. viewtopic.php?t=4074. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[gordbentley]

yes i would say chelation with DMSA followed by mino is a good call. im starting to see a cycle the more i think about it. i chelated and felt great and the fatigue lifted, and knocked the pain out of my upper body and attempted at ridding it in the knees and ankles, but then my somewhat relieved immune system either made me herx hard or gave up the battle . i had done chelation for about 6 months in rounds of 3 days on 14 days off with liver detox, kidney detox and fibre for digestion with all natural candida fighters so then my knee blew up which is why i did the mino which opened my head to a whole other approach. im probably going to get my heavy metals tested again and see in the future if i should do another few rounds. so in my opinion i think its a good idea to look into

[nspiker]

@Maz wrote:

Could this be why minocycline works for neurodegenerative diseases like MS, too? The tetracyclines are highly chelative, binding to minerals, like iron, in the body. What if, therefore, minocycline was effective both for its chelative abilities and its anti-microbial props in all AI diseases in which inflammation may be causing chronic fatigue and brain fog?

My layman’s guess is that bugs thrive in mineral and cholesterol-rich environments and sequester these nutrients for themselves….what a perfect surival strategy for such bugs to create inflam in blood vessels to bring cholesterol to themselves (because the body causes cholesterol to rush to damaged arteries to act as bandaids) or to cause venous stenosis in what better venue than the brain, a naturally cholesterol-rich environment that is also iron-rich? Maybe it’s little wonder that chelation works for chronic fatigue, if so…but what of the bugs causing the problem in the first instance? Maybe the perfect protocol for an MSer or anyone with an “AI” disease and chronic fatigue is minocycline, CCSVI and chelation?

This is so interesting. What is your opinion on nanobacterium?

http://www.digitalnaturopath.com/cond/C637473.html
http://www.heartfixer.com/Nanobacterium/NB%20-%20Literature%20Review/Treatment_resistant_extremophi.htm

Treatment is basically the use of EDTA to break the calcium outer coating of the bacteria, and tetracycline to kill the bacteria. I had a electrodermal screening test which showed significant nanobacterium. My mother has a history of plaque build-up. It may or may not be contributing to my illness.

I wonder if Minocin and ALA are a combination that might chelate and kill nanobacteria?

The doctor said he was very interested in studying whether chronic fatigue patients also had these stenosed veins, similar to MSers. MSers can’t stand heat or being in the sun, much like those with lupus – well, if blood is pooling in the brain and unable to escape, then it would make anyone feel pretty heady…could other AI diseases have this same issue? Hopefully, researchers will make these kinds of connections soon!

I’ve never been able to tolerate heat, and I had CFS before lyme/babesia. There’s got to be a connection.
Any thoughts?

nancy

[nord]

Hello Maz, I hope both you and your brother are doing well!

Dr Wheldon’s (clinical pathologist) view on the effect of Cpn on blood vessels, and ccsvi:
http://www.cpnhelp.org/if_you_are_feeling_depres#comment-54707

Several other diseases with strong links to blood vessel changes (inflammation etc, the heat schock protein of Cpn is higly inflammatory) have been linked to Cpn, e g age-related macular degeneration (AMD), involving capillaries, Abdonimal aortic aneurysm (AAA) involving the largest vessel in the body. For AMD a causative mechanism has possibly been identified http://www.ncbi.nlm.nih.gov/pubmed/20393111

I also like explanations of why there are bodily changes (I don’t like “it’s genetic” or “it’s congenital”, too much of trash-can reasoning, but then I have a bit of personal bias).

Cpn thrives on iron, and can mess up the balance in several ways (perhaps even more than most other chronic infections), on top of effects of altered blood flow.

A couple of pages with background info for others:
http://www.cpnhelp.org/chlamydia_pneumoniae_in_0
http://www.cpnhelp.org/recentobservations

Nancy are you on a constant dose of Tinidazole 1g qd? There are several other good chelators and biofilm busters. If you had/have other signs, Cpn could be a good candidate for your CFS prior to Lyme (which then entered easily after Cpn limited your immune system).

Gord, there are a lot of nasty substances that can mess up our bodies, good that you are careful (I was similarly careless in my youth, fortunately only part-time in hobbies, but at rather young ages)!

[nspiker]

@nord wrote:

Nancy are you on a constant dose of Tinidazole 1g qd? There are several other good chelators and biofilm busters. If you had/have other signs, Cpn could be a good candidate for your CFS prior to Lyme (which then entered easily after Cpn limited your immune system).

Nord, I was tested for CpN by VIPdx pcr and it was negative. Thank goodness there’s one bug I don’t have!

I have been on Tindamax 1g for over a year, and recently was cut back to three weeks on, one week off. As I am weened off tindamax, will take GSE for cyst-busting.

nancy

[nord]

@nspiker wrote:

Nord, I was tested for CpN by VIPdx pcr and it was negative. Thank goodness there’s one bug I don’t have!

I have been on Tindamax 1g for over a year, and recently was cut back to three weeks on, one week off. As I am weened off tindamax, will take GSE for cyst-busting.

nancy

Nancy, with that combo, Cpn would have had very slim chances to survive, anyway! PCR for Cpn is very tricky, it seems.

I have tried GSE, but didn’t see any effect (perhaps wrong forulation/brand GSE seems a bit tricky to get right). Did you use other supplements for babs (like artiseminin, and perhaps green tea, noni)? Just curiosity, Bart seems to be what I have left to deal with.

I hope you do well off tini!

[Maz]

@nord wrote:

Hello Maz, I hope both you and your brother are doing well!

Dr Wheldon’s (clinical pathologist) view on the effect of Cpn on blood vessels, and ccsvi:
http://www.cpnhelp.org/if_you_are_feeling_depres#comment-54707

Several other diseases with strong links to blood vessel changes (inflammation etc, the heat schock protein of Cpn is higly inflammatory) have been linked to Cpn, e g age-related macular degeneration (AMD), involving capillaries, Abdonimal aortic aneurysm (AAA) involving the largest vessel in the body. For AMD a causative mechanism has possibly been identified http://www.ncbi.nlm.nih.gov/pubmed/20393111

I also like explanations of why there are bodily changes (I don’t like “it’s genetic” or “it’s congenital”, too much of trash-can reasoning, but then I have a bit of personal bias).

Cpn thrives on iron, and can mess up the balance in several ways (perhaps even more than most other chronic infections), on top of effects of altered blood flow.

A couple of pages with background info for others:
http://www.cpnhelp.org/chlamydia_pneumoniae_in_0
http://www.cpnhelp.org/recentobservations

Hi Nord,

Always nice to see you pop by here and you always bring such good links and research! 🙂 I will spend some time going over these, although I did get a chance to read Wheldon’s opinions of CCSVI. I actually agree with him and do think the procedure comes with some risks (my brother didn’t have any stenting performed which does bear risks of thrombosis, which is why they are now rxing blood thinners for several months post-CCSVI in these patients) and I also firmly believe that infections are involved in the development of stenosed veins in the first place.

However, the way I look at it is that if a heart patient has blocked arteries, one wouldn’t stop them having balloon angioplasty performed if these vessels were closed off…the procedure can be life-saving, even if not actually addressing root causes. So, if the procedure brings a return of some quality of life to MSers (less brain fog, less tingling/numbness, less chronic fatigue, return of use of limbs, etc), even temporarily, if re-stenosis occurs and the procedure needs to be repeated, then it should be a procedure that is widely available to those who choose it. I don’t think it’s a standalone curative procedure, though (more in the catagory of palliative), and think that infectious causes (plural) are definitely at the root of MS.

Just seeing my brother’s wan face flush with color, for his sense of taste to return, to regain his balance, his hearing and eyesight to improve, being able to lift his leg and walk independently of his cane…all these and more were pretty miraculous. He had 90% stenosis in his left jugular and two other veins in his chest that were blocked and refluxing…it was a miracle. Course, I’d love to see him on some type of abx protocols, too, but that has to be his decision. 😉

Thanks, again, Nord…I appreciate your sharing here.

[nord]

Thank you for the kind words, Maz! How good to hear that your brother improved so much from the ccsvi relief! As I read these exeriences of quick improvement, I conclude that if I were affected, to resist contemplating the ccsvi dx and surgery, I’d have had to have as quick improvement from abx that I’ve experienced for my condition! As long as one is aware of the reach of each intervention, they can be used alone or complimentary, as it fits the patient. Of course, I agree that there are multiple possibilties of infections, and even other culprits (like metal/other hypersensitivity, etc) both in MS, and in other chronic illnesses. I suspect some have more potential of being at the core of the problems, those affecting the immune system most.

I should correct that Dr Wheldon is clinical microbiologist (I think it’s the professional association he is Fellow of, Royal College of Pathologists or so, not sure of this).

His own story of reduction of hypertension from treating Cpn is rather compelling in itself, what incredible waste if only a small faction of hypertension sufferers could be improved in this way, and also another case of normalised blood vessel function from Cpn treatment (if it wasn’t some other pathogen, targeted by the therapy).
http://www.cpnhelp.org/david_wheldons_story_cpn_treatment_of_cardiac_myalgic_symptoms#comment-60958

So, I think almost any increase of attention that infections as cause of chronic conditions, including AI ones, is likely to be beneficial. There is still so much that is unknown, so much need for research.

[Author]

Posts