Could there be a blood vessel problem?

[Merida]

Recently I learned of a disease called fibromuscular dysplasia. It is a non-atherosclerotic, non-inflammatory disease of blood vessels that causes abnormal growth in the artery wall. Middle aged women are most commonly affected, but men and children can also have the disorder.

The renal and carotid arteries ( in the neck ) are most commonly affected, but mesenteric, intestinal, and other areas can also have this abnormal growth in the arterial walls. Symptoms depend on what arteries are affected. If the arteries in the neck are affected, then blood flow to the brain is compromised. Fibromuscular dysplasia seems capable of producing all of the symptoms we have.

Blood flow in the vertebral and carotid arteries in the neck can also be compromised by rotated vertebrae associated with neck trauma and / or scoliosis. Additionally, some people are born with small holes in the lateral parts of the neck vertebrae - sometimes smaller on just one side. The vertebral arteries thread through these small holes, and thus blood flow to the brain can be affected by holes that are too small and by rotated vertebrae.

These various issues can predispose to little tears in the arteries - ie arterial dissection. Not good.

Has anyone had magnetic reasonance angiography on their neck arteries to see if blood flow is normal?

 

[JennyJenny]

No. My doctor has mentioned it and now I wonder if he feels that it is part of our illness. He is a Rheumatologist that specialized in CFS. (If only I had him a couple decades ago I might not be where I am now.)

But, I have a $150.00 co-pay on tests AND getting out for another test might kill me.

I think he was looking for cholesterol blockage as it was a little high but now I am on a low dose of cholesterol medication.

My mom had the test years ago and it was perfect. But I have a feeling I am more like my dad. But thanks for the reminder and I might have the test done next year. (I just can't pull it off this year, financially and physically.)

 

[Issie]

I've had ultrasound and is ok.

Issie

 

[Merida]

I just discussed this with my doc today. The test that needs to be done is an MR angiogram. It is just an MRI with some dye injected in a vein. The vertebral arteries are surrounded bone and can not be imaged well with ultrasound.

I am going to have this done, and will report results. Interesting that it looks like these carotid and vertebral arteries ultimately supply blood to the pituitary and hypothalamus, among other things. Anyone know about this??

I also see that various autoimmune problems can cause a vasculitis or inflammation of these arteries. hmmm.

 

[Cort]

Recently I learned of a disease called fibromuscular dysplasia. It is a non-atherosclerotic, non-inflammatory disease of blood vessels that causes abnormal growth in the artery wall. Middle aged women are most commonly affected, but men and children can also have the disorder.

The renal and carotid arteries ( in the neck ) are most commonly affected, but mesenteric, intestinal, and other areas can also have this abnormal growth in the arterial walls. Symptoms depend on what arteries are affected. If the arteries in the neck are affected, then blood flow to the brain is compromised. Fibromuscular dysplasia seems capable of producing all of the symptoms we have.

Blood flow in the vertebral and carotid arteries in the neck can also be compromised by rotated vertebrae associated with neck trauma and / or scoliosis. Additionally, some people are born with small holes in the lateral parts of the neck vertebrae - sometimes smaller on just one side. The vertebral arteries thread through these small holes, and thus blood flow to the brain can be affected by holes that are too small and by rotated vertebrae.

These various issues can predispose to little tears in the arteries - ie arterial dissection. Not good.

Has anyone had magnetic reasonance angiography on their neck arteries to see if blood flow is normal?

It's amazing how many different disorders there are! It would make sense although blood flow to the muscles in ME/CFS also may be affected. Check this out:

Another female dominated disease.

FMD predominantly affects middle-aged women, but has been found in men and people of all ages.[1] Pediatric cases of FMD are vastly different from that of the adult population. The prevalence of FMD is not known. Although the disease was initially thought to be rare, recent studies have suggested that FMD may be under diagnosed.[5]

Symptoms of craniocervical involvement include headaches (mostly migraine), pulsatile tinnitus, dizziness, and neck pain, although patients are often asymptomatic.
Symptoms may include headaches, insomnia, fatigue and chest or abdominal pain.

Theories of hormonal influence, mechanical stress from trauma and stress to the artery walls, and also the effect of loss of oxygen supply to the blood vessel wall caused by fibrous lesions.[7] It has been suggested that environmental factors, such as smoking and estrogen, may play role in addition to genetic factors.

Patients may present with FMD in multiple vessels. FMD has been pathologically categorized into three types of classifications:

The most accurate diagnosis comes from combining clinical presentation and angiographic imaging. According to the Michigan Outcomes Research and Reporting Program (MCORRP, 2013) the length of time from a patient’s first signs or symptoms to diagnosis is commonly 5 years.
FMD is currently diagnosed through the use of both invasive and non-invasive tests. Non-invasive testing includes duplex ultrasonography, magnetic resonance angiography (MRA), and computed tomographic angiography (CTA).[4] Invasive testing through angiography is the gold standard. However, due to the higher risk of complications this is typically not done early on. Occasionally, FMD is diagnosed asymptomatically after an unrelated x-ray presents the classic ‘string of beads’ appearance of the arteries, or when a practitioner investigates an unexpected bruit found during an exam. When a diagnosis of FMD is considered for a patient thorough medical history, family history as well as vascular examination should be completed.

The vascular sub type of Ehlers-Danlos Syndrome (type IV) has been associated with medial FMD.

What do you bet that a subset of ME/CFS and FM patients have this.....

 

[Cort]

I just discussed this with my doc today. The test that needs to be done is an MR angiogram. It is just an MRI with some dye injected in a vein. The vertebral arteries are surrounded bone and can not be imaged well with ultrasound.

I am going to have this done, and will report results. Interesting that it looks like these carotid and vertebral arteries ultimately supply blood to the pituitary and hypothalamus, among other things. Anyone know about this??

I also see that various autoimmune problems can cause a vasculitis or inflammation of these arteries. hmmm.

Hey, I think it's coming down to the blood vessels - I really do. I've felt that for years. Maybe blood vessels get tweaked in a variety of ways in ME/CFS (???)

Thanks for the interesting info!

 

[Issie]

Could the blood vessel problem be because of biofilm communities affecting the blood vessels. They protect Protozoa (Lyme and co infection, bacteria and virus). I feel, The core issue is autoimmune related. There are only a few things that form biofilm.

http://www.cortjohnson.org/forums/threads/cause-and-effect.2718/page-2#post-5747

Issie

 

[greg hay]

i believe most likely in vessels.....inflammation and biofilm adherence on vessel wall.
caused by autoimmune reaction....many suggest from leaky gut.
but if it was leaky gut a 5 day fast would cure autoimmune.....and it doesnt. so most likely NOT food or food antibody.
more likely is autoimmune to existing infection.
blood flow,oyygen supply to cells and CO2 removal seriously inhibited by the vessel inflammation and biofilms.
hence d-lactate...PEM....etc.
this why regular medicine cant find anything....our blood contains all the essential nutrients and RBc,WBC as all good.
Problem is blood to cell transfer due to biofilm intrusion.
ourbloodwork is "ok"....cell work is f@@*ed.
you can take vitamins and supplements for 10 years....you just boost your already ok bloodwork.
need to concentrate in biofilm breaker and infection removal.
I am patient of KDM and he uses 10Mg X 24 infusions of B12 to break biofilm.

 

[Issie]

My biofilm breaker is Lumberkinase. Very potent. Also doc wants me to eat Papaya daily. Timing is everything on how you do your supplements and attacks.

Issie

 

[Merida]

Well, I will see what I can find out.
Biofilms are an interesting idea. Issie, wow - you have tried everything.
Greg, interesting that the mesenteric vessels of the gut can be affected in this fibromuscular dysplasia - maybe even peripheral vessels. Another intestinal problem is a long, redundant colon. I have been dx with this. The problem is that it can twist and kink. Yes, I developed a large ulcer due to telescoping of the sigmoid colon.

Our bodies really seem different from the norm - but exactly what is the big problem that is causing so many symptoms? I have lots of ideas, but no answers (

 

[Merida]

It's amazing how many different disorders there are! It would make sense although blood flow to the muscles in ME/CFS also may be affected. Check this out:

Another female dominated disease.


What do you bet that a subset of ME/CFS and FM patients have this.....

Thank you! Yes!!!

 

[Cort]

i believe most likely in vessels.....inflammation and biofilm adherence on vessel wall.
caused by autoimmune reaction....many suggest from leaky gut.
but if it was leaky gut a 5 day fast would cure autoimmune.....and it doesnt. so most likely NOT food or food antibody.
more likely is autoimmune to existing infection.
blood flow,oyygen supply to cells and CO2 removal seriously inhibited by the vessel inflammation and biofilms.
hence d-lactate...PEM....etc.
this why regular medicine cant find anything....our blood contains all the essential nutrients and RBc,WBC as all good.
Problem is blood to cell transfer due to biofilm intrusion.
ourbloodwork is "ok"....cell work is f@@*ed.
you can take vitamins and supplements for 10 years....you just boost your already ok bloodwork.
need to concentrate in biofilm breaker and infection removal.
I am patient of KDM and he uses 10Mg X 24 infusions of B12 to break biofilm.

Gotta learn more about biofilms! I know almost nothing about them. Anyone want to do a blog on biofilms?

 

[Merida]

As I keep reading about collagen disorders so many family /my health issues begin to fall into place. I see that collagen is the main component of connective tissue, and the most abundant protein in the body - found in bones, muscles, skin, and tendons. There are many types.

The filum terminale ( suspected to have abnormal elasticity in tethered cord syndrome) has a special longitudinal arrangement of collagen bundles, as well as elastin and other fibers that should give good elastic properties to the filum.

For years I have tried to understand the foundational problem for all these health issues in me/ my family: spina bifida occulta, congenital heart problems in several- niece had surgery at 3 months for holes in her heart, mitral valve prolapse, club feet, repeat bladder infections/pain / symptoms ( bladder lining is a special collagen - a glycosaminoglycans - thought to be faulty in Interstitial cystitis) , eye issues - severe myopia/ torn retina at young age, scoliosis !!!, pelvic floor prolapse, hemangiomas , fatty lumps all over body, repeat mastitis, osteoporosis, sacral instability, more.

Well, all of these health issues can be associated with collagen disorders. Wow. Will get my MR angiogram ASAP.

Cort, it was these great discussions and information that brought me to this point. I think I may have arrived at the genetic problem for my family - some collagen disorder, but not Ehlers - Danlos. Wow.

 

[Issie]

There are many varieties of EDS. Don't rule it out. Many of the things you listed are EDS related issues.

Issie

 

[Merida]

There are many varieties of EDS. Don't rule it out. Many of the things you listed are EDS related issues.

Issie

Wow.

 

[Zapped]

This thread caught my eye as I have CAD (and a couple of stents in the LAD). Great cardiologist tests regularly for
everything and he likes gadgets - my man!

'Had the MRI's to neck as well well as usual ultrasounds - no vascular disease.

In my 'readings' to stay ahead of what the doc terms a 'numbers game' (i.e. ahead of snake eyes,) I came across a supplement, Reservatrol. While it's aimed at several sytemic conditions in reducing histamine effecs I found one cryptic note for application relevant to this thread's interests.

It's alleged to be good for circulation in general AND, surprisingly, for strengthening the INNER walls of of arteries. (Talk about looking in obscure places...!) This was just a couple of months ago but I immediately incorporated the stuff into my daily load of get-well-soon pills.

No efficacy feedback yet (if ever) as I haven't looked into any artery walls of late. However, I recall the tome from which I dug it out. (Before you ask for the source name and specific page I can recall it's in one of those multi-thousand page esoteric texts and that I had to mortgage the house and sell a few relatives to buy in duplicate (hard copy and download) - but fwiw it's got solid credentialed multi-editioned authors who do impeccable research.

Probably best just to check it out with ease and add it to your regimen, unless you want the whole elephant.

 

[Merida]

Zapped,
This is great info. Thanks so much. So glad those neck arteries are clear. No worry about references for Resevatrol. I thrive on anecdotal information - it runs my life and is often better than doctor info.

Isn't Resevatrol found in red wine? Woohoo - I could just go to the source, but I would never wake up.

The fact that you got this "thing" in Lake Tahoe in 1985 is very interesting to me. My son, age 5, got a severe viral infection in early June 1986 - determined by early lab work to be EBV. Was sick for years with multiple neuro symptoms/health issues. Two of his friends were sick for 2 weeks, and got better. His kindergarten teacher missed the whole next year of school. I have similar problems, but after a neck /pelvis injury in 1998. I am trying to understand what the common denominator is.

Going to read all of your posts.

 

[Issie]

Zapped, what brand did you get and can you tell ANY difference in how you feel? Does it help with your circulation. I do horrible with wine. Another thread - similar subject. One guy said he is drinking wine to help break down biofilms due to Lyme disease. He suggested reservatrol to me.

Issie

 

[Zapped]

...Isn't Resevatrol found in red wine? Woohoo - I could just go to the source, but I would never wake up.
...The fact that you got this "thing" in Lake Tahoe in 1985 is very interesting to me. My son, age 5, got a severe viral infection in early June 1986 - I am trying to understand what the common denominator is.
Going to read all of your posts.

'Sorry to hear that you, too, have dismal connections to Tahoe. I'm sure you know the history re: Cheney, et al and the CDC' mishandling of the whole episode.

Yours is the million dollar question, i.e. re some common denominator. I'll compound that question by adding
onto it: did locals contine to become ill there in the years that followed, e.g. with a similar affliction, or
was it an outbreak that effected those caught in that window of time, some of which was carried away by
those passing through?

Maybe someone has dug into the demographic/epidemiology figures prior and afer, say 1983 - 1989, for
Lake Tahoe and surrounds (for population illness). As you're likely aware there's mass ingress and egress there
and to/from Reno (north side of Tahoe) from busloads of CA tourists. This might explain some proliferation out of the area into CA; but did Tahoe itself remain at constant sickness levels, adjusted for statistical variants? (Good research topic if not already concluded, likely; and I'd sure like to know the answer.)

Indeed, I understand Reservatrol to be the ingredient that is often attributed to the 'Mediterranean diet' as
being healthier, relative to a long life, more specifically found in red wine. Personally, I had to give up the
grape years ago - seems I was somehow related to 'Old Stewball' (of song and lore,)

Thanks for the words of encouragement to keep at it.

 

[Zapped]

Zapped, what brand did you get and can you tell ANY difference in how you feel? Does it help with your circulation. I do horrible with wine. Another thread - similar subject. One guy said he is drinking wine to help break down biofilms due to Lyme disease. He suggested reservatrol to me.
Issie

The bottom line is no, I can not discern any affect within the last couple of months, but then would one really feel measurable effects from one contributor (of many, varied supplements) which is so miniscule; or would it be like 'eating healthy' and the effect would just occur with adaptation, e.g. like a homeostatic condition?

I continue to try a couple of different 'quality' brands, willing to pay more for that perception, hopefully correlated but not naive:& (Some quality ratings are found at labdoor.com.) I continue to up the dosage under the premise that maybe a condition of feeling better takes more time...? (Other studies had to do with avoidance of topic related ischemic events and technical observations by researchers; IMO, useful in concept but not practical for feeling better usage. I think that's where I came across the 'biofilm' discussions but frankly, passed them over as not relevant for me. I'll look again.)

To paraphrase a couple of doctors from a group of studies: '...red wine will do the job a lot more
effectively with a lot less volume due to the biochemical process. It would take a 1000 times the suggested dose
of reservatrol to get past the stomach and do the same thing... .' The party-pooper docs cautioned about keeping the red wine intake at the 2 - 3 glasses a day (vs joining a bacchus club). Opinions were also consistent that quality in brands is significant (as usual) but no specific brand was mentioned nor singled out, either way.

This raises the subjective issues of which to use. I started with Life Extension's Reservatrol, (from amazon.com at about the same price as direct, lei.org or lef.com) as their input seems reasonable (irrespective of past controversy). If I can find an enteric coated capsules, singularly or in combo with an optimizer (synergistic) I'll try those and re-post if there are some noticeable differences.

Please follow up if you find something that fits well.