issie

New direction now, seeing a Shoemaker/Klinghardt trained doc. Addressing CIRS and MARCONS.  Love her -----Dr Jennifer Smith in Scottsdale,  AZ.

I think trying to get our vitamins and minerals  through our food is best. Unless there is a known deficiency. And maybe herbs. Since they are in their whole form - just dried. As long as they are not standardized. That may take components out. 

I really like Supreme Nutrition products and feel they are making a huge difference. I'm also thinking the enzymes I'm using are good. As they help breakdown biofilm. 

I've cut supplements down a whole lot. Still cutting out. Will post when I land on a new game plan. 

Glad you are enjoying this thread and  I appreciate the positive feedback. 

Issie

Not necessarily. I'm a high Bp, considered HyperPOTS with high standing NE. With me, we just found APS which is an issue with blood viscosity. Too thick blood. I also have EDS and find I do better to vasodilate, rather than constrict. Whether or not that's because of the too thick blood - not sure. But I have fluid build up in my legs and feet too. And what appears to be blood pooling. If blood is too thick it doesn't move upwards easily. If blood is too thick it can push fluid out into tissues. We have faulty veins. Apparently our legs and muscles don't pump the blood up and there is a compensation with a norepinephrine release to increase heart rate and help to move blood up since the leg and veins are not doing it. Tachycardia is a very uncomfortable feeling, but probably is very necessary. May be a compensation to save us. I'm thinning my blood with herbals and treating a found fungal/mold problem and addressing issues with choline and calcium channels. I'm better than I have been in years. 

You are right, there is so much to learn. 

Issie

It's sort of odd feeling, posting this last finding. Sort of feels like closing a chapter - to a now complete book. Doing what I've been doing is making such a huge difference for me. 

I did modify my vegan diet to be mostly vegan and added back in occasionally some meat and cheese. But still mostly vegan.

I also found that I needed to add magnesium back. It's a  calcium channel blocker and I think there are some sort of issues there with the mast cell. GastroCrom being a mild calcium  channel blocker as well as a mast cell stabilizer. I take it a few days a week. 

I'm very conscious of using enzymes as a biofilm moderator. And use a lot of herbs for blood thinning since finding Lupus Anticoagulant  (too thick blood with APS).  Also using herbs for mold/fungus. 

Also find supporting choline and upping acetylcholine levels a huge help with brain fog and energy. 

I'm doing better than I've done in a long time. Hoping to continue in a positive direction. 

I'm not on forums much any more. But thought some may appreciate an update on this subject. It's had a lot of views - especially the initial post about it on this site - New Doctor - New Ideas.

Issie

For those who have been following me and know about what I've been pursuing - Here's some more information that has been learned. 

http://www.ncbi.nlm.nih.gov/pubmed/28411089

(You may need to copy and paste the link to go to the pubmed article.)

Dr Fry, Doctor/bioscientist - who found Protomyzoa Rehumatica - now has determined it's a type of mold/fungus. (We found it in my thyroid biopsy.) He just got a peer reviewed paper in Pubmed. He has determined that with us, who have issues with it, there is a genetic flaw and we don't have a certain protein to break this mold down. It can cause tumors, cancer, atherosclerosis and a host of other issues. He is going to stop seeing patients and go into lab only, for now, to try to develop a protein for us to use so our immune system will keep it in check. It will probably be a number of years before that will be available. 

I asked him what in the meantime. He said to keep with my herbs. I seem to have it under control. But we are going to see if an antifungal may help more. He has found using an antifungal along with Doxycycoline gives his best results. 

Exciting times ahead. I stick to what I've been saying forever --- Genetics/Epigenetics, autoimmune and inflammation. If we could get that "fixed" we'd be "Healed".

Issie

Some new information.

http://www.ncbi.nlm.nih.gov/pubmed/28411089 (you may need to copy and past this pubmed link.)

Dr Fry, Doctor/bioscientist - who found Protomyzoa Rehumatica - now has determined it's a type of mold/fungus. (We found it in my thyroid biopsy.) He just got a peer reviewed paper in Pubmed. He has determined that with us, who have issues with it, there is a genetic flaw and we don't have a certain protein to break this mold down. It can cause tumors, cancer, atherosclerosis and a host of other issues. He is going to stop seeing patients and go into lab only, for now, to try to develop a protein for us to use so our immune system will keep it in check. It will probably be a number of years before that will be available. 

I asked him what in the meantime. He said to keep with my herbs. I seem to have it under control. But we are going to see if an antifungal may help more. He has found using an antifungal along with Doxycycoline gives his best results. 

Exciting times ahead. I stick to what I've been saying forever --- Genetics/Epigenetics, autoimmune and inflammation. If we could get that "fixed" we'd be "Healed".

Issie

37 minutes ago, Nlightenup said:

Issue, please say more about using frankincense. I have plenty but have no knowledge about using it for pain relief.

Rather than my telling you what I have experienced in its help, may be better to Google it and see what docs have written about its use and why it works.  Lots of links there. 

Issie

14 hours ago, ANCY said:

Thanks Issie what is a bladder suspension? They are talking about putting a foley in for a temporary  solution. the Geneticists we saw didn't want to label EDS but he told us if we went to another Geneticists they would say EDS.

My bladder had dropped and they pull it back up and staple it in place. Seldom got infections after that. 

Are you not able to hold your urine or can't release it?  If it's a spasm and can't release - muscle relaxers help.  If it's you can't retain or hold - may be bladder drop or possibly the uterus has dropped pressing on bladder. (This was my case - it was EDS related.)

Issie

I'm using the oils, but do have teas too. 

Hope you can find something that helps. 

I used fresh parsley  heated in water, boil until green - drink water - got rid of urinary infection no medicine helped. I did have to have a bladder suspension.  But I have EDS.  

Issie

Ancy, some pain meds may not work for some. Morphine is like giving me water. I have to use Demoral along with Zofran for major surgeries. For not so major - Tramadol with Bentyl  works. Sometimes have to figure out which receptors we need to tweak for our pain. As for natural things - turmeric and ginger. Frankincense and myrrh very helpful. Also kills some bacterias, protozoa etc. All can potentially cause a die off affect (herx).

Heat is better for me, rather than cold. Big heating pad, is my friend. Lying here with one on my neck. 

Issie

Yes had many clean ups and finally complete hysterectomy after 8 surgeries. Endometrosis can be connected to MCAS (mast cell activation syndrime).  If you had any prolapse - dropped uterus, bladder - also look in to EDS (Ehlers Danlos).  I had all those things. I don't remember rectal bleeding either. I do wish I had known that there was an estrogen dominance issue connected to it. And had I balanced my other hormones, maybe things would have gone better. 

Issie

Do a search on the forum. We used to be able to get a discount on cooling vest from two different companies.  I don't know if they are still honoring the discounts. 

Issie

Tramadol along with Bentyl has been my best POTS medicines. Along with mast cell meds of Allegra, 1/2 Zantac and GastroCrom. 

Issie

1 minute ago, Kaitlyn said:

Yes I agree it's a balancing act and each person has to make their own informed choices with their providers.

Issie you mentioned raising normally low BP and wouldn't that be high BP for that person then. No not necessarily. Last winter I got a cold and my BP tanked to the point that my MAPs were in what could be considered danger zone. BPs of for example 67/39 and resistant to everything including 30 mg of midodrine per day, fluids, Mestinon etc. what eventually helped was 1. Time and 2. Homemade salt capsules. 

I guess my point is there is a time and a place and it is a personal choice. We all have to walk a line.

i sure appreciate your research and the point you are trying to make. For me right now it comes down to cost vs benefit. My cardiologist also seems to have much more immediate concern about my current BP than my arteries.

Best wishes ?

 

I hear ya. Desperate situations call for desperate measures. 

Issie

https://www.sciencedaily.com/releases/2015/03/150310160033.htm

Quote:

Finally, sodium may also affect the sympathetic nervous system, which activates what is often termed the fight-or-flight response.

"Chronically elevated dietary sodium may 'sensitize' sympathetic neurons in the brain, causing a greater response to a variety of stimuli, including skeletal muscle contraction," Farquhar says. "Again, even if blood pressure isn't increased, chronically increased sympathetic outflow may have harmful effects on target organs."

_____________

I've scanned Google and so far, on page 22 and it keeps going. High salt intake can affect so many organ, brain function, heart, kidneys and endothelial linings of blood vessels and arteries. It affects NO release and is thought to potentially contribute to atherosclerosis, possibly dementia, heart and kidney failure and other things.  Appears the raising of volume occurs because the kidneys are overtaxed and can't remove as much sodium as is taken in. That imbalances the electrolytes even further. And as time continues the kidneys start to not be able to eliminate waste products as efficiently. 

I just can't see how any doc would be able to "guarantee or assure" a patient that they would not have any adverse affect from something so corrosive. We do need a certain amount. But not like POTS people are mega dosing on.  To much points to adverse affect. 

Issie

http://www.bloodpressureuk.org/microsites/salt/Home/Whysaltisbad/Saltseffects

Here's an even better article showing what high use of salt can do to the kidneys, brain, heart and arteries. They are somewhat attributing some of the ill affects to higher blood pressures. But if some are normally low blood pressure and raising it - would that be considered high blood pressure for that person? 

Some salt is good, but high levels of salt......I question.

Issie

Arterial stiffness would create issues with blood flow. The arteries would not constrict and contract properly to push blood up to the heart and head, like we need for less symptoms. Salt may help with blood volume due to blood volume expansion. But.......

If our tachycardia is a response to help pump blood to the vital areas (head and heart) is further supressed with meds - when it's a body compensation to move blood out of the extremity, and up.  Then if you have veins and arteries compromised by arterial and vein "stiffness" due to salt (as this article suggest) - you have more issues than what you started with. 

My POTS doc at Mayo told me not to use salt. I'm so glad he notices the different subset types and apparently  is aware that it's not good for all (I question if for anyone). I have EDS too. Florinef was horrible for me. Drugs that vasoconstrict were also. And extra salt was not only not good or a help for my POTS but helped to contribute to kidney issues,  heart problems and severe edema.   (Yes I tried it before my subset type was determined.) And yes, too much salt will imbalance potassium and magnesium and other electrolytes.

As stated above, we are all different. But just because a doc "assures" you something is "safe" - doesn't mean science will agree with him. 

Issie

For me, I have tremors too. Was first DXD with Parkinson - that was wrong. I am HyperPOTS. Beta blockers made me so much worse. I think the hyper response for me is connected to too high glutamate. Certain foods can increase that. I became lowfat, Vegan. Made a huge difference. As for meds, my best ones are Tramadol and Bentyl and GastroCrom along with Allegra and 1/2 Zantac. Works for me. I also use herbals. Working on HyperPOTS,  MCAS and EDS......very helpful. 

Issie

According to the article........quote:

even in people whose blood pressure is unresponsive to salt intake, they still suffer significant suppression of their artery function. So, even independent of any effects on blood pressure, salt hurts our arteries, and that harm begins within minutes of it going into our mouth, for our major arteries, and even our itty bitty blood vessels.

So even if we exclude whether or not it helps our blood pressure - it damages our veins and arteries..

Issie

http://nutritionfacts.org/video/sodium-and-arterial-function-a-salting-our-endothelium/?utm_source=NutritionFacts.org&utm_campaign=c537b7af50-RSS_VIDEO_DAILY&utm_medium=email&utm_term=0_40f9e497d1-c537b7af50-23372221

I've questioned the use of salt in POTS almost from day one. I just can't see how, long term, it's good. For me it wasnt. 

Here are some old threads I started years ago. (I have since refined some of my thoughts as my knowledge increased.)

http://forums.dinet.org/index.php?/topic/16668-renin-aldesterone-the-article/

http://forums.dinet.org/index.php?/topic/15830-more-on-aldosterone-and-renin/

http://forums.dinet.org/index.php?/topic/15806-some-out-of-the-box-thinking-need-some-feedback/

http://forums.dinet.org/index.php?/topic/15869-cortisol-aldosterone-hormone-support-would-it-help/

Something to consider. We need our veins and arteries functioning to their best level to carry our blood and oxygen to where it needs to go. Damage vein function and/or make arteries stiff and things are NOT going to work properly. We may increase blood volume, but it may not help but hurt us in the long run. I have questioned many of the drugs used to treat POTS. They are masking the issues, not getting to the core problems. I've been saying for years it's autoimmune and inflammation problems.  Thankfully science is proving just that. 

Issie

@GypsySoulNicole

Wondering how you are doing. Ran across an old PM discussing diet from you. Wanted to discuss what your doing now. PM me. 

Issie

I have tremors too. I'm starting to think mast cell reactions are contributing. Maybe not completely,  but a part of it. If the Benadryl helped - could be that connection. 

Issie

Sue, I do that sometimes too. But if I keep my mast cell issues under better control - it's less. Have you tried treating that to see if it helps?  When I'm real bad and want it to work faster, I get children's liquid Allegra. I also take more GastroCrom. 

If it's POTS related, I find Motherswort or Blackstrap molasses to help. It seems the minerals (or something) in there help and calm the sympathetic system down. 

Issie