Check This Out

[juliegee]

I am very excited to have found a site that connects MCA/dysautonomia/CFS/Anti-phospholipid syndrome- all of my stuff!!! It seems to have been created by a Microsoft employee that was struck by this combination of illnesses as were his wife and children???? It's a bit difficult to get around the site. But years and years of research, experience, observation are included. I've only begun to peruse it, but it's gratifying and thrilling to find someone is dealing with the same things my family and (many here) are AND he's taken the time to share all of this. Look around the site & tell me what you think.

http://www.lassesen.com/cfids/statement.htm

http://www.lassesen.com/cfids/familyhistory.htm

Julie

[juliegee]

More that connects anti-phospholipid syndrome with CFS (and therefore dysautonomia) This is possibly HUGE...

http://www.ncf-net.org/library/hemex-APS-1999.htm

Interestingly, MCAD is mentioned in this one:

http://www.doveclinic.com/downloads/specific/Chronic%20Fatiuge%20Syndrome%20part2.pdf

So exciting- I'm doing my happy dance

[firewatcher]

Julie,

Can you get in touch with the author of the site or his family doc? There was no contact info that I could find on the site, but there are ways to see who owns it...

Will your rheumatologist take this seriously?

[lieze]

I think you are onto something there.

I wonder if you could contact him via email and talk to him about your symptoms and get his insight on it.

It's shocking that his entire family was affected by this.

The one child being allergic to green vegetables, yeah I believe thar but I'm still in the process of trying to figure out what I can eat and not and my husband can't figure out why I don't feel like going out to eat at Bob Evans!!!,

Can we just have an ambulance on standby outside.?

Maybe they can go ahead and hook me up to an IV before I take the first bite just so they are ready.

Why does he not get that?

The part that really interests me personally is this Chronic fatigue connection,

This might be a route for me to explore myself.

Thanks for sharing and I hope that you can find a direction for treatment through this connection.

[lissy]

You know something very bizarre when I first got severe ill I went to a rheumy and I had the all the tests for Lupus and the aPPt test was a part of that panel. Which is the APS test and it was positive and you have to have the test repeated 3 times all positive with a certain amount of time in between each test anyway the next tests were negative but it was kinda interesting why it was positive to begin with and no you are bringing up this correlation with dys. I am so glad your getting more information and putting all the pieces together in your case:)

[sue1234]

It was really interesting. I was reading about mast cells and histamine this morning, then ran into cytokines within the reading, looked it up on Wikipedia, and at the bottom, it said to look up Antiphospholid disorder for further reading!! It is all so connected, for sure.

When I read the Microsoft guy's article, I saw that one of his family members tested positive for h. pylori, and it made me remember my post about a possible bacterial connection to POTS back in August:

You can reread what I wrote in my initial post, and see how h. pylori(for instance) could set off the whole cascade of events that lead to:

MCAD, which would lead to

leaky vessels, which would lead to

lower blood volume, which would lead to

POTS, which would lead to

activation of the sympathetic nervous system, which would lead to

tachycardia, erratic b/p, gastroparesis, insomnia, and all of our other symptoms.

This is the kind of thing I keep trying to get a doctor to try and figure out. I can see the sequelae happening, just need to find the root cause. My gosh, if we can figure it out, where are the doctors to connect the dots???

I tell you, every time I leave another disappointing appointment, my husband always says, "You know, at the way things are going, you're going to have to figure this out by yourself because, at this rate, we won't find a doctor that will figure this out".

Well, I think maybe WE ALL might figure out some contributing factors that are not hereditary. As long as we keep our brains functioning and contributing!

[Sarah4444]

I was also wondering how we could potentially contact Mr. Lassesen. The only contact address I found was on his professional website, www.lassesen.com, under the privacy statement, and was listed as admin@admin.com. It is interesting that he mentions NMH as a symptoms of CFS on his original CFS website. A lot of the stuff on the site though, is his personal experience and opinion.

[issie]

Julie,

I think you're on to something here. If you guys remember, I wrote a post on aldesterone and renin. One of the things mentioned in this guys review was low aldesterone. This is true for those with LOW blood pressures. Usually, us hyper POTS patients wouldn't do well with more aldesterone (although mine was low). I have a long compiled version (what was supposed to be printed) if anyone wants a copy I'll PM them. But, I also contacted a compounding lab and they are willing to compound aldesterone in a transdermal form and work with doctors if we can find a doctor to take this approach - it is an RX. But, on the site you just found it list some over the counter herbal things that can naturally increase the aldesterone levels.

I also have been doing so many of the things he suggest - olive leaf, tumeric, enzymes, etc.

I too have had some supposed TIA's and feel that my blood is not carrying the oxygen correctly. Especially, since at times I have to use oxygen and a CPAP. I recently added Vinpocetine by Solaray and it has Gota Kola, Butchers Broom, Rosemary and Ginger in it - all these help blood flow.

I've also realized that autoimmune and mast cell issues are involved - and closely connected. I'm doing the olive leaf and colostrum with beta glucans (Symbiotics - Immune Defense Colostrum) for that - along with quercetin, B-complex and Vit C. The elimination diet of glutten, sugar and dairy - go along with this too.

So, unknowingly - I've been doing some of the things he suggested and I'm doing better. Not cured - but better.

I agree sue1234 - we just might get this figured out on our own. Then we'll need to present it to a doctor that will look into it - and THEN maybe, we'll get the needed treatments and help and not just a bandaid. I really believe that some of the things being done - are FLAT WRONG. I think they are making people worse off - in the long run. A temporary fix - isn't worth it if we cause renal or heart failure because of the meds/salt we're on.

Keep up the good work - keep digging. We will get these pieces put together.

[cordellia]

knowledge is power. julie, thank you for sharing. with my best, cordelia

[juliegee]

Thank you all for checking the site out- so much to pour over and links to many other sites. I want to respond individually to everyone, but have a hectic couple of days. Issie, I am with you on the salt. It seems to be a band-aid for too many and a lazy way of treatment. It helps- in the short run, but could hurt long term. Patients need to get to the bottom of WHY they have orthostatic issues. Inexplicably, I have been found to be in stage one heart failure. This is relatively common in patients with connective tissue disorders- which MANY of us have- ALL the more reason to limit salt. I have quit all table salt & tablets, etc. I feel better. I am weaning my son off of florinef (his BP allows at this point.) Salt is next. So much to be said for stress reduction, clean living, clean eating, and supporting the body's natural defenses- that are haywire in so many of us

I am sad to say that I have not heard back from the creator of this site. I sent him an E-mail. I am very curious to see how he, his wife, and children are faring. It is eery how similar their experience is to mine & Mack's. I fee blessed to have found this treasure trove & have lots more reading to do to absorb it all.

Hugs-

Julie

[Sarah4444]

If anyone has read these, can you tell me why the chronic infection is a necessary part of his theory? Wouldn't having APS, an autoimmune condition, be enough to explain the increased tendency to coagulate even without the chronic infection? (Although it does make sense that infections would trigger/exacerbate epiosedes of coagulation, I just don't get the chronic part).

[issie]

Julie,

I'm sorry to hear that about your heart. I too, have the connective tissue disorders. I wonder though if the salt and flornef didn't contribute to the issues. We know that most heart doctors warn against a high salt diet. People are using high salt and using flornef. Were the adrenals tested to see if flornef was even needed??????? Or, were people put on it to try to up their pressures because of the orthostatic issues? If the adrenals were'nt the cause - then you create another problem within the body. Not only do you lower the aldesterone that is normally produced in the body with the syntehtic version of it (flornef), but then your body will stop producing it on it's own. So, go slowly in getting off the flornef or you could really crash. You have to give your body time to start it's own production. The transdermal form doesn't go through the liver and would be less toxic to the system. But, I think, that supplemental aldesterone should probably not be used if the person is a hyper POTS patient. Hyper POTS people already have their bp's being on the higher side - at times. You don't want your high bp's to go higher with additional salt retention. Aldesterone is the salt modulater and fluid balancer. It has to be mointered very, very closely - if it goes too high (as could happen with florneff or even the transdermal aldesterone) there could be grave issues. Are doctors mointering this in patients that use florneff???????

I doubt it. I worry that some of these younger people are being given the standard treatments for POTS and their young lives could be so adversly affected FOREVER. We need a new perspective - a new way of looking at this - a different approach. I'm thinking the autoimmune - food sensitivity -maybe even gentic components are what we should be looking at. I'm looking into something I just learned about. More later - after I form an opinion on it.

Issie

[juliegee]

If anyone has read these, can you tell me why the chronic infection is a necessary part of his theory? Wouldn't having APS, an autoimmune condition, be enough to explain the increased tendency to coagulate even without the chronic infection? (Although it does make sense that infections would trigger/exacerbate epiosedes of coagulation, I just don't get the chronic part).

Here's a quote from the more recent Lassen site:

"Hughes syndrome is caused by antibodies that result in deficiency of certain enzymes, such as annexin V. These enzymes normally form a shield around certain phospholipid molecules that blocks their entry into coagulation (clotting) reactions. In the Hughes syndrome, the formation of this shield is disrupted by these abnormal antibodies. Without the shield, there is an increased quantity of phospholipid molecules on cell membranes, speeding up coagulation reactions and causing the abnormal blood clotting characteristic of the Hughes syndrome.

In terms of CFS, this ?sticky? blood means that oxygen delivery to the brain and to the body is reduced. Many of the cognitive characteristics of hypoxia or acute altitude sickness are also seen with CFS ? for example, insomnia. ?Sticky? blood also mean reduced nutrients to the body and impeded removal of toxins ? for example, higher level of carbon monoxide and increase in lactic acid concentration.

What causes these antibodies? Many different type of infections have been implicated ? including viral (EBV), mycoplasma, chlamydia, rickettsia and even helicobacter pylori[ii]. It is interesting to note that many of these infections prosper in a low oxygen environment, so the disruption of coagulation has probably been beneficial to these infections? desire for low oxygen."

He seems to hypothesize that one acquires Hughes Syndrome as opposed to being born with it. In my case, I never exhibited symptoms until I was already sick- which seems to go along with his theory. It takes the infection to set this process off.

BTW, he talks about Hughes and variants of Hughes. He seems to imply that some with sticky blood will NOT have certain genetic markers that are typical with Hughes.

I have found 2 versions of his disease model and each is different. Confusing. I'm trying to stick to his most recent stuff.

Julie

[Sarah4444]

Maybe what he is saying is that with Hughes Syndrome, your genetics make you more likely to be vulnerable to hypercoagulation, but it takes something like an infection to trigger the process?

[juliegee]

Maybe what he is saying is that with Hughes Syndrome, your genetics make you more likely to be vulnerable to hypercoagulation, but it takes something like an infection to trigger the process?

I think you got it- kind of hard for me to grasp. I'm still working on it.

I'm going to print out Lassen's model for my rheumy & let her take a crack at it. In many ways, Dr. Rowe (Hopkins) seems to be implementing portions of it as he's had my son on antibiotics for almost a year now.

Hugs-

Julie

[sue1234]

Wouldn't it be nice if some of our causes were bacterial and simply taking an antibiotic at the right dose for the right length of time could give us an improvement??!! Let's keep our fingers crossed it boils down to something treatable.

As far as genetics go, I feel genetics doesn't mean black or white automatically all the time. I feel that there is alot of gray area where it might be "switched on" or "switched off". I think environment(food, living situation, stress, etc.) plays a huge part in developing something or not. So, I agree with y'all that something must have "pulled the trigger" in causing it to develop. Hopefully the pieces keep falling into place.

[Sarah4444]

Although I guess if Epstein Barr virus was the trigger antibiotics wouldn't be the answer. Does he say anything about treatments if the supposed trigger is viral?