Breakspear medical clinic (UK)

[brenda]

Mog, I am not sure why my GP agreed. I had said that I dont fit into the criteria for cfs as fatigue is not my main symptom, and as the NHS will not accept my German Lyme blood test, then I would like to know what I have got.

 

[Glynis Steele]

Can I ask how you managed to get it on the NHS? That would be good!

I had the autonomic testing done but don't know what the results mean.
"The baseline autonomic index test shows frequent abnormal spontaneous brainstem activations (ASBAs). The cardiac vagal tone and CSB are also on the lower levels."
Can anyone interpret that for me please? I was told that the brainstem activations were caused by viral infection. What is CSB?

Hi Mog,

Not sure if this is helpful, I googled this part of your comment "The cardiac vagal tone and CSB are also on the lower levels." and found this article:

Reduced cardiac parasympathetic activity in children with autism

• Xue Minga, b, , ,
• Peter O.O. Juluc,
• Michael Brimacombed,
• Susan Connore,
• Mary L. Danielsd

• a Department of Neuroscience, New Jersey Medical School, UMDNJ, Newark, 90 Bergen Street, DOC 8100, NJ 07103, USA
• b Center for Childhood Exposure and Assessment, Robert Wood Johnson Medical School, UMDNJ, Pitscataway, NJ 08854, USA
• c Department of Neurology, Peripheral Nerve and Autonomic Unit, Central Middlesex Hospital, Park Royal, London, UK
• d Department of Preventive Medicine, School of Public Health, UMDNJ, Newark, NJ 07103, USA
• e Department of Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, MD 21205, USA

• Received 29 September 2004. Revised 27 December 2004. Accepted 7 January 2005. Available online 16 March 2005.

Abstract

Many of the clinical symptoms of autism suggest autonomic dysfunction. The aim of this study was to measure baseline cardiovascular autonomic function in children with autism using the NeuroScope, a device that can measure this brainstem function in real-time. Resting cardiac vagal tone (CVT), cardiac sensitivity to baroreflex (CSB), mean arterial blood pressure (MAP), diastolic blood pressure (DBP), systolic blood pressure (SBP) and heart rate (HR) were recorded in three different groups of children. The symptomatic group (n=15) consisted of those with autism who exhibited symptoms or signs of autonomic dysfunction. The asymptomatic group (n=13) consisted of children with autism but without symptoms or signs of autonomic dysfunction and the healthy children were in the control group (n=117). The CVT and CSB were significantly lower in association with a significant elevation in HR, MAP and DBP in all children with autism compared with the healthy controls. Further more, the levels of CVT and CSB were lower in the symptomatic than in the asymptomatic group. The levels of CVT and CSB were not related to age in all the three groups. These results suggest that there is low baseline cardiac parasympathetic activity with evidence of elevated sympathetic tone in children with autism whether or not they have symptoms or signs of autonomic abnormalities.

 

[bertiedog]

I think you missed the point I was making. The oxygen has made a massive difference to my severe dysautonomia I have obviously been short in oxygen for probably over 12 years. I can do so much more and feel and look so much better so much so I am going to order my own machine. With severe POTS I don't believe its possible to reverse it especially at my age of 64 so I am more than happy to use oxygen as needed.

I am also going to follow up on the yeast/mold issues I have but I can order tests for that myself through Genova. Depending on the results if it comes out I am actually allergic to the mold then I might consider immunotherapy for it but that is as far as I would go.

I am also taking Immunovir which I get from the Breakspear so again I am very thankful for that because my GP would not prescribe it. All in all I am looking for answers but with POTS its a slightly different story.

Having done some more thinking and research I posted this on the oxygen thread as to reasons why I am short of oxygen and thought it might be useful to post it here -


Reasons for needing oxygen in ME/CFS


I read a very informative article from the Medical Insider which I think has helped me to identify why it might be that I need oxygen and wonder if others have worked out why they benefit from oxygen?


In the section about Hydrogen Sulphide (H2S) it says that this is an endotoxin equivalent to Hydrogen Cyanide and the reason for having high levels is the action of bad bacteria, yeasts, fungi and parasites fermenting sugar in the GI tract. As H2S is a natural byproduct of various bodily processes (producted by the brain, pancreas and GI tract) it plays a role in regulation of the blood pressure, body temperature, vascular smooth muscle, cardiac function, cerebral ischemia and in modulation the HPA axis (most of these involved in the POTS I suffer with),


Because it is a natural substance oxidative enzymes exist in the body capable of detoxifying H2S by oxidation to harmless sulphate. Elevated levels of H2S in the blood and tissues show that the body’s oxidative enzymes cannot effectively deal with other chemical toxins from the blood in addition to the H2S (from bad bacteria, yeasts, parasites) or chemical drugs. All this causes damage to the mitochondria thereby blocking oxygen from binding and stopping cellular respiration.


Many of you may remember in 2009 Kenny De Meirleir brought out a simple home test to see the level of H2S in the urine. I remember mine turned dark black very quickly which meant I had high levels of H2S. However I am not sure if anybody else has replicated his work on H2S?


In addition a test I had on Cardiolipin Function showed the Cytochrome C Oxidative enzyme which is involved in ATP production showed that I had low numbers of this enzyme and 50% of the ones I had were being blocked by nickel instead of manganese which is needed to activate the enzyme. I also had raised nickel in my red blood cells. Dr McClaren Howard who did the test said that the nickel could basically stop the Cytochrome enzyme from working properly.


Unfortunately for whatever reason I have been unable to get rid of the nickel or the mold I have in my gut despite rotating anti-fungals since 2008 and also good probiotics. Could it be the low oxygen environment stopping my cells from dealing with the mold and the nickel? I have checked out what it is I need to get rid of nickel and its 500 mg L-methionine before breakfast with 500 mg reduced glutathione after breakfast together with 30 mg zinc and 500 mcg selenium. After one month do the same at lunchtime. Repeat blood test after 3 months to see if the nickel has gone down.

Another point about the nickel is to limit what one takes in every day so I am now using a glass teapot rather than a stainless steal one because I have at least 5 cups of tea daily.

Pam

 

[justy]

Having done some more thinking and research I posted this on the oxygen thread as to reasons why I am short of oxygen and thought it might be useful to post it here -


Reasons for needing oxygen in ME/CFS


I read a very informative article from the Medical Insider which I think has helped me to identify why it might be that I need oxygen and wonder if others have worked out why they benefit from oxygen?


In the section about Hydrogen Sulphide (H2S) it says that this is an endotoxin equivalent to Hydrogen Cyanide and the reason for having high levels is the action of bad bacteria, yeasts, fungi and parasites fermenting sugar in the GI tract. As H2S is a natural byproduct of various bodily processes (producted by the brain, pancreas and GI tract) it plays a role in regulation of the blood pressure, body temperature, vascular smooth muscle, cardiac function, cerebral ischemia and in modulation the HPA axis (most of these involved in the POTS I suffer with),


Because it is a natural substance oxidative enzymes exist in the body capable of detoxifying H2S by oxidation to harmless sulphate. Elevated levels of H2S in the blood and tissues show that the body’s oxidative enzymes cannot effectively deal with other chemical toxins from the blood in addition to the H2S (from bad bacteria, yeasts, parasites) or chemical drugs. All this causes damage to the mitochondria thereby blocking oxygen from binding and stopping cellular respiration.


Many of you may remember in 2009 Kenny De Meirleir brought out a simple home test to see the level of H2S in the urine. I remember mine turned dark black very quickly which meant I had high levels of H2S. However I am not sure if anybody else has replicated his work on H2S?


In addition a test I had on Cardiolipin Function showed the Cytochrome C Oxidative enzyme which is involved in ATP production showed that I had low numbers of this enzyme and 50% of the ones I had were being blocked by nickel instead of manganese which is needed to activate the enzyme. I also had raised nickel in my red blood cells. Dr McClaren Howard who did the test said that the nickel could basically stop the Cytochrome enzyme from working properly.


Unfortunately for whatever reason I have been unable to get rid of the nickel or the mold I have in my gut despite rotating anti-fungals since 2008 and also good probiotics. Could it be the low oxygen environment stopping my cells from dealing with the mold and the nickel? I have checked out what it is I need to get rid of nickel and its 500 mg L-methionine before breakfast with 500 mg reduced glutathione after breakfast together with 30 mg zinc and 500 mcg selenium. After one month do the same at lunchtime. Repeat blood test after 3 months to see if the nickel has gone down.

Another point about the nickel is to limit what one takes in every day so I am now using a glass teapot rather than a stainless steal one because I have at least 5 cups of tea daily.

Pam

Hi Pam - bit tired to do a full post but noticed you said 500mcg a day of Selenium? that sounds an awful lot. (you probably already know this) Selenium is extremely dangerous at high doses.
Just concerned for you and others who might read this and think thats a satndard dose.
All ther best, Justy.

 

[aquariusgirl]

i think u probably have some form of iron deficient anemia.. but not the classic kind.. more due to problems with iron transport.. I say this based on my response to Christine/dog person's manganese/b2 protocol.

I wish she had something published because I can't explain the theory ....but she's on to something.

Imagine being iron deficient on top of having a screwed up krebs cycle due to too many metals/low glutathione... I guess that would mean our brains are not just short of ATP, but oxygen also...

The manganese and B2 is helping my brain like nothing else has done.. ... it's quite extraordinary.

All the usual caveats. YMMV. Manganese esp. seems to be problematic at certain dosages. I am doing tiny dosages spread out over the day...I am being supervised etc, etc.

Interesting tho to note that I was looking at the markers for iron deficient anemia, MCHC, RBCW.. stuff like that.. & that all sounded really familiar. I need to pull my labs and check...but it seems like the dots are being connected.

 

[bertiedog]

With regard to the high dose selenium it helps to transport the nickel out of the body (the idea being the nickel latches onto it I think). This has been recommended by the biochemist that Dr Myhill uses, Dr McClaren Howard.

I already take high dose B2 to prevent migraines and all the supplements to aid methylation.
Pam

 

[aquariusgirl]

that's interesting.. i thot JMcLarenHoward was using methionine for the nickel. Will have to check w/him on that. thanks.

 

[justy]

With regard to the high dose selenium it helps to transport the nickel out of the body (the idea being the nickel latches onto it I think). This has been recommended by the biochemist that Dr Myhill uses, Dr McClaren Howard.

I already take high dose B2 to prevent migraines and all the supplements to aid methylation.
Pam

Hi Pam, thats interesting. Ive had tests done through Dr Maclaren Howard as well. I understand what they are saying - and i dont want to be dramatic, but an overdose of selenium can cause death. It really is a mineral that needs to be treated carefully - i take it, on dr Myhill recommendation at 200mcg a day - which is considered a high end dose - 100mcg is a maintenance dose.
Again, only concerned that no one overdoes it with this one!
Take care, Justy.

 

[globalpilot]

i think u probably have some form of iron deficient anemia.. but not the classic kind.. more due to problems with iron transport.. I say this based on my response to Christine/dog person's manganese/b2 protocol.

I wish she had something published because I can't explain the theory ....but she's on to something.

Imagine being iron deficient on top of having a screwed up krebs cycle due to too many metals/low glutathione... I guess that would mean our brains are not just short of ATP, but oxygen also...

The manganese and B2 is helping my brain like nothing else has done.. ... it's quite extraordinary.

All the usual caveats. YMMV. Manganese esp. seems to be problematic at certain dosages. I am doing tiny dosages spread out over the day...I am being supervised etc, etc.

Interesting tho to note that I was looking at the markers for iron deficient anemia, MCHC, RBCW.. stuff like that.. & that all sounded really familiar. I need to pull my labs and check...but it seems like the dots are being connected.

Where can we find more information on this ?

Also, wanted to mention that iron is involved in the electron transport chain so needed for ATP production as well as oxygen delivery. So, even if you don't have iron deficiency anemia you could still have a problem with low iron. That's the situation I face.

 

[aquariusgirl]

frou corrected me on another forum. It's not iron deficiency anemia. It's anemia of chronic disease. I think Klimas just published a paper on this. It was posted on this forum.

Treatment of course is another issue. I am working with dog person/christine... early days.. but some gains.

 

[Mog]

Glynis, thank you very much for the link.
Brenda, lucky you for getting your GP to send you there! I would be battering against a brick wall if I even suggested it to my GP unfortunately. When I try the "but I don't know what is actually wrong with me", he says "you've just got post-viral fatigue". Which I believed for the first couple of years, but 19 years on... please.

How much B2 do people take for migraine prevention? I take 100mg a day and I do think it helps.

 

[bertiedog]

Hi Mog

I find that 100 mg B2 with breakfast and 50 mg B2 with lunch has really helped my severe migraines. I started this 2 April and since then I haven't had one migraine go on into the next day. Even if I do get one the pain isn't so severe and it responds to Paracetemol, Ibrufen and if necessary 50 mg Sumatriptan. It is gone by lunchtime, something unheard for me. Its the best thing I have found to both stop migraines starting and if they do break through they are much milder.

I have told 2 other migraine sufferers about high dose B2 and it has helped them too.

BW
Pam