Cause and effect.

[Issie]

I have Hyoer POTS. I am one of the rarer subset types with higher blood pressures. POTS is not based on your blood pressure but on your heart rate with upright posture. I do have the drops in my blood pressure but it starts from a higher baseline. So when it drops it may appear into a normal range - but it's too much of a drop too fast and can still cause extreme dizziness, naseau, near fainting and tachycardia to try to pull the Bp back up. The blood in the lower body,below heart level, can pool and not circulate properly and that's why probably there is an extreme release of NE to cause the heart to pump harder to get the much needed blood to the heart and head. If you have this Protozoa and biofilm issue, and narrowed veins due to it, with the autonomic nervous system is in overdrive because it needs to be as a compensation - that causes an extreme anxious feeling with the surge of too many catacholomines. Plus you may have pooling of you blood - mine because I have EDS (Ehlers Danlos) and this seems to be common in this subset type of POTS with MCAS. That's a cliff note version - it is much more complex. But you get the picture. For me, an abdominal binder works better than compression hose. The compression hose actually seem to cause more nerve damage to the small nerves and more issues with neuropathy. But I do wear them with long trip travel and if I pool too bad and have edema going on. Because of the higher BP I don't salt load like most POTS people do. And also having kidney issues - that's not a good thing. I'm not low salt - but I don't over salt either. I have research on this and the affect it can do to the veins and affects on kidneys. Corrosive. Also upsets kidney function of renin and aldosterone. Some POTS people are low in these two things - I am.

Issie

 

[greg hay]

Hi.
so your pots come at same times as your cfs onset....or it come.along later time.
sounds scary.....
yea sounds like vessels are not dilating fast enough to allow for xtra blood requirement on standing.
cant dilate cos they are stiff with biofilm.
same reason my blood pressure jumps nearly 100% on light.exertion.
vessels dont have required flexibility for aerobic dilation....
Fluge and mella noticed already that cfs patients dont have "spring" or flex in their vessels. They did a paper on it.
did you ever.try.cowden protocol....i have been in touch with a few cfs buddies...great success.on it.
Remove the infection.......tear away biofilm...support immune system....and keep fingers.crossed.
MMS may help in this regard.

 

[Issie]

Hi.
so your pots come at same times as your cfs onset....or it come.along later time.
sounds scary.....
yea sounds like vessels are not dilating fast enough to allow for xtra blood requirement on standing.
cant dilate cos they are stiff with biofilm.
same reason my blood pressure jumps nearly 100% on light.exertion.
vessels dont have required flexibility for aerobic dilation....
Fluge and mella noticed already that cfs patients dont have "spring" or flex in their vessels. They did a paper on it.
did you ever.try.cowden protocol....i have been in touch with a few cfs buddies...great success.on it.
Remove the infection.......tear away biofilm...support immune system....and keep fingers.crossed.
MMS may help in this regard.

No not tried that protcol. Mostly trial and error and a lot of research to come up with what I take and do. Doc does use doxy and I was on that for 2 years now. Just trying to come off and see what happens. Off all meds for last 2 weeks.

I looked up that MMS a I had not heard of it. looks very toxic. Not something I would try - especially with weak kidneys.

As for CFS. If I compare my fatigue to my sisters fatigue I would wonder if I have it. I can check off all the criteria boxes. But, my level of dysfunction from fatigue is not as bad as my sisters. I have more dysfunctions or labels of illness - but I feel I function better than she does. What came first - the chicken or the egg. For me this has a family history of multiple members having and Ive been struggling since being a child. I grew up in a very chemical laden environment with them being spewed into the air. Played behind mosquito fog trucks and rolled in the grass after it was poisoned. Had tons of mosquito bites and a tick bite. Was probably damaged by vaccines. And genetically had some predisposed things tuned on by epigenetics. That being said - I'm soooooo much better now. Addressing the immune system and inflammation and tweaking known mutations and pathway dysfunctions and DIET is key.

Issie

 

[Issie]

I just looked at that protocol. I dont think ALL those supplements are necessary. I also listen to a Lyme webinar (Dr. M Ross - he does free webinars) and the treatments they use are a whole lot less than whats there. Curcumin is one that most advised in high doses (I use the turmeric spice) and they also recommend samento and banderol. (They felt these two worked 90% of the time. If it doesnt then they try antibiotics.) They are of the opinion to get the immune system working properly and hopefully keep them at bay. They talked about flares coming when under stress. So it sounded like they didnt think one could totally get rid of it. They said the best antibiotic is doxy as it actually kills the protozoa by breaking its shell down and it exploding. It also works on all three forms. Thats the one Ive been on. They feel the herx is because of an increase in cytokines. So addressing detox and inflammation is important. Glutathione is also spoken highly of. To calm the nervous system and adrenals they said ashwagandha is the best choice as it will swing the system to calming because it is a neutral in heat herb.(They do IV of the glutathione - but do recommend a supplement too.) Too hot herbs like ginseng and ridolia will over heat and swing you to hyper response. (I took notes - this is coming from them .) They felt yeast is likely an issue. And with those not responding as a last thing to check is heavy metals. But, this they seldom check. I did have high aresinic and lowered it with lots of cilantro and sodium aliganate.

My doc believes the DIET is the key and we might could do it without any additional supplementation if we adhere close enough to it. I do my best, but I'm not perfect. So I do supplements too. And I did the doxy and Artemisinin with lumberkinase. Also probiotics at a different time.

Lots to learn on this one. Takes time and patience with lots of ups and downs.

Issie

 

[greg hay]

Hi issie.
yea maybe not all are.critical on cowden....but little point to leave ones out unless on a cost savings.
mostly.good reviews i have read on it.

 

[Issie]

My argument to taking everything is: we are already in a somewhat dysfunctional autoimmune response mode. If that were working correctly we would be at the very least able to keep things in balance and under control and would be none symptomatic.

Our bodies have to break down and detox whatever we put into it. If we cause ourselves a herx and have to process/eliminate a die off of the organisms and also have to process supplements we may not need - then we are taxing the body unnecessarily. If I can get the same desired result with less that's the way I'd rather go. And if I save some extra money by not buying unnessary supplements - I'll take a vacation to OZ or New Zealand. (Two places on my bucket list.)

Issie

 

[Merida]

I have learned about a disease I have never heard of: fibromuscular dysplasia. It is a non atherosclerotic, no inflammatory disease of the blood vessels. The carotid and vertebral arteries are most commonly affected. Well, that is the blood supply to the brain! However any artery can be affected. Read about this!!!

 

[Issie]

I have learned about a disease I have never heard of: fibromuscular dysplasia. It is a non atherosclerotic, no inflammatory disease of the blood vessels. The carotid and vertebral arteries are most commonly affected. Well, that is the blood supply to the brain! However any artery can be affected. Read about this!!!

That is interesting. This biofilm attaches to vein walls. The small ones. It may also be in the arteries. Makes sense that it would. My doc has a new paper soon to be published about some interesting findings with testing they had done. Ill post it when it comes out. But these protozos along with bacteria and virus live in them. Its like the biofilm is a forcefield around them to protect them and keep them thriving while keeping free from detection from the immune system.

Issie

 

[Issie]

http://www.termedia.pl/Original-pap...nd-review-of-the-literature,76,23697,1,1.html


Heres the paper from Dr Fry. Its interesting what all illnesses they are connecting to these biofilm communities and the protozoa, virus and bacteria they protect from detection from the immune system.

Issie

 

[greg hay]

its the most likely scenario.
This is why semi-pro atheletes etc can turn to wrecks in weeks with CFS/ME......in most cases post infection/virus.

This is the CFS model by Fluge/Mella:http://bildr.no/image/b2xkWnlV.jpeg
In my opinion its right on the money.

 

[Issie]

http://forbesindia.com/blog/health/when-malaria-bug-resists-its-best-antidote/

Here's something of interest. Appears in some countries malaria is becoming resistant to Arteminsin alone. Adding curcurmin is helping avoid that. (The Protozoa Dr Fry discovered is a malaria like Protozoa. The latest thing he told me to do was add massive doses of curcurmin. And we also use Arteminsin. However, this caused a horrible herx and I went back to using turmeric which is milder for me.)

Issie

 

[greg hay]

#why not use plaquenil?
tried and tested for effectiveness against malaria.
safe also.
So Dr Fry believes an infection is caused by some sort of malaria type strain?
if this was case CFS incidence should be higher in malaria countries.....but its the opposite....its more prevalent in the Europe and US.....developed countries.

 

[greg hay]

also very good for biofilms war is bicarb soda drink X 3 day. hence the use of bicarb in toothpaste, excellent plaque remover.
lemon water.....dissolve anything if its strong enough. (2 lemons per pint)
MMS. (bit of the dark side).

 

[Issie]

The Protozoa that he discovered and his lab is researching is a malaria type Protozoa. He has discovered it in Mosquitos and ticks and spiders. I'm from the South originally and we had tons of Mosquitos. There are few that know about this Protozoa. He developed the stain to detect it. Still a rather new discovery that he is trying to get the word out about. He feels that there may be many with it, but their immune systems fight it off and they may not have issues. But for those who don't fight it off - there are real problems. I also have Lyme co infections. Positive labs.

He does use Plaquinol with some. But I don't have the enzyme to break it down properly and that could be a disaster for me. Curcurmin or turmeric is the alternative.

I drink lemon water daily. Helps liver detox. Very necessary.

Issie

 

[greg hay]

Hi.
how much circumin do you take a day??
Maybe this is why plaquenil works for sjorgens so well. It.works but they dont really know why!!!

 

[Issie]

I use about a teaspoon turmeric in a 1/2 cup green tea with a teaspoon black cumin seeds ground.

This is my starting dose. Will be going up with it. He prefers curcurmin as it is more potent. But caused a bad herx for me. Turmeric is milder.

Issie

 

[greg hay]

Hi.
I use curamed....10 times better absorption.
http://www.europharmausa.com/products/curamed-750-mg/

 

[Merida]

A great discussion. The biofilms in the blood vessels is all new to me - and very interesting. Back at the beginning of my career in clinical diagnostic microbiology (1970s) we were discussing new information on bacterial Biofilms in the bladder. A real dilemma for those of us trying to grow out organisms.

 

[Issie]

I use about a teaspoon turmeric in a 1/2 cup green tea with a teaspoon black cumin seeds ground.

This is my starting dose. Will be going up with it. He prefers curcurmin as it is more potent. But caused a bad herx for me. Turmeric is milder.

Issie

I found out that black cumin seed can lower your blood pressure. After 3 weeks lowering mine a little to much. Going to not take it daily and rotate now. Still using green tea and turmeric.

FYI - turmeric has been found to help depression too.

Issie

 

[Issie]

Article on turmeric

http://www.greenmedinfo.com/blog/gr...s-turmeric-extract-superior-prozac-depression

Issie