Strange 'Atypical' Symptoms - Any Idea What's Going On?

Onslow

Active Member
He is not in work. He stands all day purely as a preventative measure to stop the horrible waves of brain fog/spaciness - if he relaxes and sits down that is when he starts to feel worse. He has to constantly be doing something as if to keep his blood circulating.
Has he tried relaxing and taking a nap when he feels like this?

I'm not sure if standing all day is really a good solution.
 

Issie

Well-Known Member
DDawn, so sorry to hear about your son and what he is going through. And also about the family connections. I can so relate and you could have been writing my story and that of my family. It for definite sure, sounds like a form of dysautonomia - of which there are many subset forms. The high catachlomines with standing (depending on high high they go from lying to standing) can determine if his subset type is HyperPOTS. With this form we (including me) have very high NE (norepinephrine) and usually along with it comes some pretty uncomfortable tachycardia. It is felt this is probably a compensatory response to get the blood to go to our heart and head. As these are very vital areas to have blood and it may divert it from our extremities. This can make one feel very faint, dizzy, naseaus and have some pretty bad anxiety. But it's absolutely necessary to keep us alive. It is thought that we have low oxygen levels due to the lack of blood flow. Some of us have apena and none of us seem to breathe properly. With the type of POTS I have, I tend to have higher blood pressure, but I still have the orthostatic drops that cause the surge of tachycardia to bring up my pressure. Not all have the severe drops in pressure and seemingly smallish drops can trigger the autonomic nervous system and we have this response. Some (and more common) have lower blood pressure and faint with these drops. Thankfully I've only fainted twice, but I have enough symptoms to alert me to get down before that happens.

With the HyperPOTS subset, also seems to be with many of us, what we call the trilogy. We have MCAS (mast cell activation syndrome). This is very unpredictable and is not a true allergy, but an over response or degranulation of mast cells. This can cause anaphylaxis. It can be triggered by strong emotions, physical activity, over heating, foods etc. You may be fine one time and react the next. It can cause symptoms of hot flashes, flushing, and with it severe anxiety and feeling like you can't catch your breath. Many of us have epipens on hand, just in case. But many of us can keep things managed with H1 (Allegra) H2 (Zantac) antihistamines and mast cell stabilizers (GastroCrom).

And the third part of the trilogy is (EDS) Ehlers Danlos (usually EDS3). EDS can be tested by genetics, except for the EDS3 form and it is sometimes refered to as Hypermobile Joint Syndrome. This can cause all sorts if issues. Many of us have lots of pain and get osteoarthritis at young ages. We tend to be the ones as children that were easy to turn our ankles and seemed to always have a bruise somewhere. Many of us have subluxations of our backs, shoulders, neck, fingers etc. We get good at putting things in and being very aware of how we sit, stand, and sleep or else we are out and in pain. This can also cause issues with the veins. We are over stretchy and our veins can be too. However, (and this is odd) with me, I do better using things to vasodilate (but not to much) rather than vasoconstrict. And I'll explain why I think this a little further down. Not all POTS people can be treated the same. What works for me, will not work for someone else. Sadly, many docs are still not aware of this fact and they give all of us the same meds and same instructions. But, that can be diasterous for some of us when our subset type hasn't been properly determined.

A little history - mine goes back 4 generations, that we know of. My grandmother we are quit certain had POTS and EDS. My mom had EDS and MCAS. My sister has severe CFS and is in most all the research studies that are in progress, right now. She also has severe OI (orthostatic intolerance) to the point of her heart stopping on her tilt table test - 3 minutes into the test. Her kids have EDS, MCAS, and POTS. I have all three of those things and many autoimmune problems - including hypogamaglobulinemia. So you see it can run in families. And like you, my sister had anorexia. Our family has been asked to be in the genetic study that is going on for CFS. The boys are not yet old enough for consent and so far, we don't have approval for them to be accepted yet.

There also are methylation issues involved in our family. MTHFR and other mutations involved in this process. This would be worth taking a look at. Treatment fory mutations have helped me alot. This was also a family issue. The child born before me had spina bifida. A sign of Folate methylation dysfunction.

The other thing to consider is vaccines. My sister and I started manifesting more issues after polio vaccines. This was back in the 60s and there was a big cover up in regard to these vaccines. But there seems to be other vaccines that some have connected to their children seeming to get worse after them.

The other thing I have found with myself is I have Lyme and coinfections along with another protozoa called Protomyzoa Rehumatica. This last protozoa can be gotten by mosquitoes. Makes you think of the new Zika virus. (Just announced today they have the first case in AZ. I don't need any more protozoa/viruses from mosquitoes.) My doctor feels alot of the symptoms I have of POTS is connected to these protozoa. They form biofilms in the veins. Biofilms are a protective housing for pathogens, virus and bacteria. (Dental plaque is a biofilm.) They attach to the vein walls and can affect function of veins and blood flow. He (Dr Stephen Fry ) recently released a paper in London. They analyzed plaque pulled from a heart bypass and found these protozoa in it. I feel part of my dysfunction of blood flow is connected to the biofilm and what it houses because of the effect they have in the veins. That, I feel, is why dilation helps me. But ultimately, the problem is - my immune system isn't working properly. If it were, it would detect and fight these things off on its own. But it doesn't. Getting the immune system to recognize these organisms and breaking down the biofilm so it can recognize and destroy - seems to be what is helping me the most. I was on low dose Doxycycoline and antimalarial herbs for years. Now I'm doing it with herbs and essential oils. I'm also finding cleanses to be very helpful. I became a lower fat, Vegan. That reversed Chronic Kidney Disease from stage 3 to high range normal. For those having chronic Lyme it has recently been found there may be issues with mold. This is my latest discovery. A thyroid biopsy of a growing nodule - has found mold in it that causes tumors in the body. My cleanses are addressing the mold and other pathogens.

It makes sense that exercise helps your son. If there is pooling in his legs and possibly dysfunction of his veins either because of EDS or Biofilm, he could have high catachlomines of NE to make his heart increase pumping to get his blood up to his heart and head. If he is getting horizontal and exercising he is shifting his blood out of his feet aiding his heart in pumping with the exercise and he gets better. Until he stands in one place too long, without moving and it starts all over again. It can cause severe brain fog and just generally a sick, anxiety filled, panic feeling. With tachycardia, shortness of breath and likely alot of weakness. If EDS is involved there is pain and lack of endurance. And if MCAS is involved we react to everything out of the blue with no rhyme or reason to it. There is PEM for sure and yes there is fatigue. If your heart is running away with you, it's like running on a treadmill from sitting to standing. If we stand you will see us dance. We move around, sway and just generally can't stand still. We have to keep our blood moving while upright. You may see us fidget while sitting too. The leg shake, tapping feet, fidget. Again, us compensating for blood flow issues.

I feel there is also issues with low testosterone for guys. Many of us POTS girls have had endometrosis and that is thought to be an estrogen dominent issue. (Has the balance between testosterone to estrogen been checked?)

There may be a connection to dopamine and glutamate as well. I've written quite a bit on the DINET site about those things. As well as here on Cort blogs and forums. I personally feel there may be too high glutamate and that may be more of an issue with POTS, than what was previously thought. NE, I feel, is necessary as a compensation. Lowering my high level was a diasterous experience. Many times, what we consider as symptoms are the bodies compensation for another problem. If we stop our body from compensating for whatever the "cause" is, that will cause us worse dysfunction.

I could keep going, but you get the jest of what may be the issues. I'm glad that DINET was suggested. Go on there and search topics. Lots of the more technical things were discussed several years ago. Many of us that researched alot are no longer there. But you can do a search on the profile of those you may like to read about, what they have researched and what they have to say. I still visit there, but seldom participate. Also Healthrising blogs and forums have some very good comments, research and information about these things. Cort wrote to asked me to comment on this thread. I hope some of this will be helpful.

Issie
This is an update to my rather long post here.

The doc who was calling Protomyxzoa Rehumatica has since learned that what he thought was a protozoa is in fact molds. We verified his findings with a biopsy of my thyroid and finding them in one of the 5 tumors. Since that time, I've gone through all the genetic/other testing for CIRS and Marcons. Of which I was extremely positive. I had the worst genetic markers for being unable to throw off molds and biotoxins. I was exposed for about 10 months to a moldy house. But when I got back to my own home and checked it for mold - it's clear. Despite detoxing for about 3 years now, my markers still look as if I'm in present exposure. I'm not. The only conclusion I can come to is its internal. This doc says we are missing a protein and there is a genetic mutation causing this. He stopped seeing patients and went into research exclusively to try to find a way for us to get this needed protein. In the meantime, we keep trying to break biofilms down, treat mold and fungal issues and detox as much as possible. I'm doing the Shoemaker protocol with a little Klinghardt protocol and my doctor spin on all she has learned. We are also having to treat me for Lyme and babesia. I've finally starting to feel like I'm turning a corner - however slightly.

Issie
 

Merida

Well-Known Member
@Issie
Thanks so much for your continued up dates. I haven't been on for a while due to family needs and ridiculous fatigue. I am interested in this whole mold phenomenon. As a diagnostic microbiologist I was in charge of pathogenic fungus at my lab. These were pretty rare, but turned up in chemo patients and suppressed immune patients. And some of them were odd organisms and hard to grow on standard media - like Nocardia asteroides.

I am very curious about exactly what the name of the fungus in your thyroid is called?

Have you been treated for low thyroid?
 

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