issie

Yes, silver along with Xclear, mixed together and sprayed in my nose 2x a day is part of my treatment for mold. Seems to make a difference. 

Issie

The antibiotics and antibiotic like herbals can potentially affect the autoimmune system. Low dose antibiotics for 3 years, for Lyme and other protozoa gave me my life back. Many times of nearly not having POTS. Although still there, my function improved considerably. Until, my latest issue of mold exposure. Working on that now. Starting to have improvement again. 

Issie

I posted this in response to a question asked of me on my rather long thread. But didn't want it to get overlooked as it is a very important finding. I've often said I felt a polio vaccine triggered my sis and my downward spiral around age 8, for me. 

http://m.lup.sagepub.com/content/25/4/339.long?view=long&pmid=26846691

Issie

http://m.lup.sagepub.com/content/25/4/339.long?view=long&pmid=26846691

Here is the article showing that vaccines can trigger autoimmune response and possible contribute to autoimmune POTS. 

Issie

4 hours ago, RichGotsPots said:

Issie, not sure what you are getting at with your update.. What is your vit d level?

Rich, my Vit D is within the range that the labs consider normal, but Life Extension docs say it should be up around 80. Mine the last time had gone down from 50 to 30. Despite taking 10,000 a day. That's why I think it is my body trying to compensate for too high levels of calcium. If the D were higher, my calcium would increase even more. To keep calcium in bones and out of soft tissue and arteries,  while on Vit D, it requires Vit K to keep it there. And magnesium helps to keep the ratio of calcium to magnesium more balanced. 

You also asked in a PM about whether or not I am still doing the biofilm protocol. I felt it important to share that answer too. Yes, most definitely I'm still using enzymes and oils to break down biofilms.  Biofilms encase and protect protozoa,  bacteria and virus that it encases. First you have to break down biofilm to get to it, or nothing you do changes much. If it's shield isn't weakened for the immune system to be able to detect it then either, antibiotic or herbals can't get to what you are trying to destroy - it's pretty much a waste of effort and money. That being said, there is new research showing that POTS has a strong connection to autoimmune dysfunction. Some of these pathogens are so tricky for the immune system to detect. It is possible for them to take on some of our DNA and look to be a part of us and then the body attacks self. It knows something is foreign but can't detect what . Happens with vaccines too.  I've always felt a polio vaccine when I was around 8 triggered the start of my battle. I'll try to get the link to the new article. I have it in pdf form and can't print it. 

Issie

EDIT 2016 - I found that I am getting calcification in soft tissues. Research shows two things that could cause this. One is not using Vit K with Vit D. It helps keep the calcium in the bone. The other is lack of magnesium which moderates calcium. More current research on Lyme shows that yes biofilm does use magnesium to get stronger. But it also uses calcium and iron. Another Lyme doc I recently read about feels calcium is more an issue than magnesium. So knowing that my body is showing signs of a magnesium deficiency and too much calcium - I'm using transdermal magnesium spray a few times a week. Can't say that I feel any different, but maybe it's helping to get calcium more in balance. Also, added Vit K to my supplements. Another interesting note is Vit D can be low in your body to try to adjust too high calcium. If your calcium is high, likely Vit D will be low. It's a self regulating thing. I stopped mega dosing Vit D, it just wasn't coming up with more and now I think I know why. 

Issie

EDIT 2016 - I found that I am getting calcification in soft tissues. Research shows two things that could cause this. One is not using Vit K with Vit D. It helps keep the calcium in the bone. The other is lack of magnesium which moderates calcium. More current research on Lyme shows that yes biofilm does use magnesium to get stronger. But it also uses calcium and iron. Another Lyme doc I recently read about feels calcium is more an issue than magnesium. So knowing that my body is showing signs of a magnesium deficiency and too much calcium - I'm using transdermal magnesium spray a few times a week. Can't say that I feel any different, but maybe it's helping to get calcium more in balance. Also, added Vit K to my supplements. Another interesting note is Vit D can be low in your body to try to adjust too high calcium. If your calcium is high, likely Vit D will be low. It's a self regulating thing. I stopped mega dosing Vit D, it just wasn't coming up with more and now I think I know why. 

Issie

For me, treating my mast cell issues helped me all around with blood pressure, POTS symptoms etc. BB was one of the worst things I tried as it degranulates mast cells. 

Issie

6 hours ago, Ebrahimi said:

I have experienced dysautonomia like symptoms since 2013. For the first two years, i did many tests (several blood tests, several 24 h urinary tests, brain and adrenal glands MRI, endoscopy, sonography, ecocardiography, etc.) but the illness was not diagnosed and different doctors said different things.

In the last months i have been diagnosed with Pure autonomic failure, but some of my symptoms are non-specific. i want to know is there anybody with symptoms similar to mine? my symptoms are:

- Postural hypo-tension. ( I do not experience postural hypotension constantly, somedays my postural hypo-tension is severe and i experience severe dizziness, heart palpitation (hard heart beat) and severe breathless when changing position or after eating, but somedays i am good and the postural hypo-tension becomes mild.)

- hypohidrosis ( I am experiencing severe hypohidrosis and severe heat intolerance)

-I do not have supine hypertension (which is common in PAF)

-i do not feel better with salt and sometimes it causes dizziness.

Is anyone with the same symptoms? specially irregular postural hypo-tension.

Tank you

 

Look into MCAS. When I started treating that alot of my symptoms, similar to yours, got much better. 

Issie

For sure I'm one with vasoconstriction. I do better to vasodilate. But only to a certain level or I'm worse. Many ideas as to why there is vasoconstriction issues. One being biofilms due to Chronic Lyme and other protozoa. It attaches to vein walls and interferes with proper vein function. (These can also be passed to unborn  children and passed with sex.) There is also some genetic components with easy blood clots and thick blood in my family. (Some have been DXD with Hughes Syndrome.)  POTS is in my family and goes back 4 generations, that we know of. 

Issie

My long held belief is it is faulty autoimmune system and inflammation. 

Issie

On 3/30/2016 at 2:35 AM, ramakentesh said:

This symptom seems related to the ineffectual attempts the body makes to adjust for reduced cerebral perfusion.

the body attempts to rely on beta receptor activation and ramps up sympatgetic activity to compensate for impaired sympathetic vasoconstriction.

it is also possible that there are central abnormalities in norepinephrine and dopamine regulation in some patients.

Serotonin could be at play but I suspect fatigue is centrally mediated from reduced norepinephrine or dopamine release the former which is centrally calming and is intimately involved in governing levels if glutamate and perhaps nitric oxide.

I've been saying for years that I felt my high NE levels were necessary as a compensation to help with blood flow to vital areas. Trying to lower that response, for me, was not a good move. 

I have also felt there are issues more with glutamate and dopamine. Actually too high levels of glutamate and imbalance in dopamine causing a more than necessary anxiety feeling. Ramping up the sympathetic nervous system too much. I found this out with my over doing of aspartame in sugar free gum and a miserable night in the hospital. (There is a thread on this.) Aspartame triggered what turned out to be a major mast cell degranulation that hit me at heart level. The treatment was nitroglycerin and massive antihistamines. For me, I'm much better to vasodilate. But only to a certain degree. 

Issie

I've been trying more organic, less chemical products. I found a place that will send samples so you can try them before you purchase. I have found my shampoo and conditioner makes a difference. I wash my hair in the shower and the product gets on your skin. I'm also using more organic, natural soaps. Making a difference. The name of the store is online and is called Revescent. 

Issie

This is just a quick note. Recently we discovered I have some calcification in soft tissue. My research on this may indicate my use of Vit D without Vit K and magnesium could potentially cause this. I never could get my Vit D levels up to desired level. Maybe this was a compensatory thing. Seems I may have issues with higher calcium or inability to moderate. Having MCAS, and GastroCrom being one of my best meds for this, makes sense. It is a mild calcium channel blocker.

My latest discovery is I too got a mold exposure that has me in a flare. I'm positive with high MMP9 and VCS study showing positive. I even took it one step further and had a thyroid nodule biopsy and it was positive for a type mold/fungus that causes tumors in the body. We are trying to sort what next. I'm doing cleanses and did 3 weeks of chlostrotyromine. The whole time on it I had horrible headaches. I also have protozoa issues and that complicates the issue. I've had the thyroid nodule and menigioma and other tumors for over 8 years. But this latest exposure to mold for going on 2 years put me over my threshold. So all my symptoms are rather intense at the moment.

Issie

That type magnesium was horrible for me. It affects brain function as it can somehow cross the blood brain barrier. I actually called the company about how severe my reaction was to it. I also have/had ehrlichiosis. Magnesium causes biofilms to be stronger and harder for us to breakdown to get to the protozoa. My doc has found his patients to get worse with supplemental magnesium.

Issie

I find turmeric and ginger helps with the pain and the herx symptoms. As mentioned earlier, some docs think the herx is excess cytokines. Things that work on cytokines and inflammation help.

I also have MCAS and the herx cause that to be a lot worse. I get headaches and naseau with that. It causes hot flashes and with it severe anxiety from sympathetic nervous system activation.

I have neurological issues with my Lyme, coinfections and Protomyzoa Rehumatica. Seems to affect mitochondria and gives leg weakness and muscles just giving out.

As for POTS, there is the tachycardia with upright posture. Standing still too long brings on naseau, dizziness and the need instantly for a chair to sit in and some way to get your feet up. Of course there is the anxiousness all those symptoms bring.

BUT.......I was good for nearly two years. My POTS at times was under control. At times I did not qualify to say I had it. The MCAS stuff was there, but not too bad. And EDS of course, brings pain that doesn't really seem to get much better. I do have a FMS label and not sure where one ends and other starts. But I was living my life, traveling and doing some very stressful caregiving for my parents who both passed away within two weeks of each other. I think that stress and being exposed to mold in their house triggered things to get out of balance again.

My DIET is my key. That also got messed up and now I'm back stricter again. I know that makes a difference.

Since Lyme and some of these other protozoa form biofilm - magnesium makes that stronger. My doc has found his patients to get much worse with it. He doesn't recommend Epsom salt either - since it's magnesium. We have to break down the biofilm to get to the protozoa, virus and bacteria that it houses and forms a forcefield around. I do that with either Lumberkinanse or Serrapeptase hours before I take either my antibiotics or antimalarialal herb.

Doxy was not as hard of a herx and I did really well with it while it worked. I'm sure, with time, I will get back to "mostly good". If I had it once, I will have it again. Try to stay positive. Attitude makes a huge difference.

Issie

I'm in another flare and my doxy quit working. He switched my meds and I was herxing bad and couldn't function with the new med. It caused all SORTS OF POTS symptoms and severe brain fog. I think it also imbalnce my gut flora. I stopped b it this week. He will have to try something else. That last med really affected me worse than the Doxy. Hoping to go back on it later. So could be a herx for sure. And may have to change med. This one caused severe leg weakness for me.

Issie

http://forums.dinet.org/index.php?/topic/26246-long-awaited-article-the-best-thing-now-seldom-have-severe-pots-or-mcas/

Maybe this will help.

Issie

I reversed my CKD with diet. I'm Low fat, whole food, Vegan. Went from 3rd stage to now normal. I never did high salt and don't think it's a good choice, for me. I have low renin and aldosterone. My subset is HyperPOTS, with MCAS and EDS.

If you do a search, I've written about my experience.

Issie

Should I update the options here or leave it. its missing a few and clearly some havent had many hits.

My best POTS meds are:

Tramadol and Bentyl

Addressing my immune system with:

Doxycycline and antimalarial herbs

Artemisinin and grapefruit seed ext. and serrapeptase or lumberkinase to break down biofilms ( addressing Lyme and coinfections with Protozoa ---- in turn will address bacteria and virus with breakdown of biofilm. Allows immune system to detect.)

Becoming Lowfat, whole food Vegan.

And addressing MCAS with:

Zantac 1/2 pill

Allegra

GastroCrom

Support for known dysfunction in methylation pathways with gene mutations

Numerous supplements

Very necessary for me is Turmeric helps with pain, depression and helps with immune system and to keep blood thinner for better blood flows. Lots of articles on its benefits.

Olive leaf as needed. Natural antibiotic.

(I no longer supplement with magnesium. It makes biofilms stronger and I'm trying to break those down. But it used to help with muscle pain and sleep.)

Issie

Dear Nova,

My view is I think the demarkation between "mental" and "physical" illness is, outside the realm of dysatonomia and especially within it, very blurry. In my case, I know my dysautonomia, which came on with a whallop this year, emerged from a traumatic work situation: on top of the fact I struggled with depression and PTSD for years. There is much in the literature about this: look up "allostatic load," or the effects of profound stress: it is highly associated with chronic disease in general, and and dysautonomia is acknowledged in particular. Dysautonomia can emerge from physical or mental trauma, infection, co-morbid syndromes, or seemingly nothing at all!

Like you, I tend to blame myself for being dysfunctional now. However, I am brightening, knowing that this disorder is truly out of my hands and head in a way I can truly control. However, this was also true for depression, which frankly, until recently, I handled extremely well. The medical world has created a great rift which is reflected in society. No one chooses or has true contral over either a "physical" or "mental" illness: in our cases, the boundaries are truly blurred. Perhaps your mother created such a stressful environment for you that your were susceptible to your current illness, but maybe not. It is confusing to doctors; it is confusing to us. Yet the origins or manifestations of our illness should not be a source of self-blame. It should not make a difference: we should be treated (and treat ourselves) with compassion and respect.

I am working hard to put together a goods medical team -- with some success after eight months of searching. Meditation, in the context of Zen Buddhism, is teaching me a lot. Like how to "detach:" in your case from your mother, in mine from my now former work situation and the preceding experiences that led to my becoming ill over it. I also need to detach from my obsession with my symptoms (not there yet!). We must learn compassion towards ourselves. Try taking care of yourself as you wish your own mother had -- with warmth, sympathy and kindness.

It really makes no difference whether our dysautonomia is the result of physical or mental illness and/or trauma, or whether it came out of the blue. We are all in the same boat here, and we need to associate ourselves, in our personal and medical worlds, with those that keep us bouyant and optimistic.

I wish you (and all out there) the best,

Sylvie

Beautiful and well written. Nice comment!!!

Issie

You are not the only one to think this might be one piece of their puzzle. But I don't believe it is all of the puzzle. Just one piece of it. You are not alone.

Issie

Hops affects the central nervous system.

Some other articles I read people think it may also affect GABA which is calming to the sympathetic system.

Maybe, Try the herb by itself and see if it does the same thing.

Some get benefit from valerian and Passion flower. My sis takes these two together and says it works great for her.

Issie

http://www.nytimes.com/1989/08/22/science/doubts-raised-about-a-heart-attack-treatment.html

Here is one article on soda and how it was found to slow blood flow and lower o2.

Issie

https://m.youtube.com/watch?v=HKYLOLptkHM&feature=youtu.be

Heres the link on surgery. Doesnt sound like it was a complete fix, But there were some improvements but not for long with some. I think we have to get to the core problem.

Issie