Hughes / antiphospholipid syndrome

[stevesayshi]

Curious if anyone had been tested and/or treated for this condition. I am not yet sure if I have true PEM or just a really rapid and progressive onset of exercise intolerance and autonomic dysfunction common in ME/CFS. I believe the hypercoagulability / hyperviscosity hypothesis has never really taken off, but given my sed rate of 2, elevated fibrinogen, and physical proximity to Dr Berg's lab, I am going to check it out. Will report back.

 

[Sidereal]

I have both autonomic dysfunction and antiphospholipid syndrome. A recent paper on the link between the two issues may interest you.

http://lup.sagepub.com/content/early/2014/02/25/0961203314524468.abstract

Postural tachycardia syndrome (POTS) and other autonomic disorders in antiphospholipid (Hughes) syndrome (APS)

1. JR Schofield1
2. S Blitshteyn2
3. Y Shoenfeld3,4
4. GRV Hughes5

1. Graham.Hughes@HCAConsultant.co.uk

Abstract
Background Antiphospholipid syndrome (APS) is an autoimmune hypercoagulable disorder that has been shown to cause a large number of cardiac and neurological manifestations. Two recent studies have demonstrated abnormalities in cardiovascular autonomic function testing in APS patients without other cardiovascular or autoimmune disease. However, an association between autonomic disorders such as postural tachycardia syndrome and APS has not previously been described.

Methods and results Data were obtained by retrospective chart review. We identified 15 patients who have been diagnosed with APS and an autonomic disorder. The median age of the patients at the time of data analysis was 39 years. The autonomic disorders seen in these patients included postural tachycardia syndrome, neurocardiogenic syncope and orthostatic hypotension. The majority of patients (14/15) were female and the majority (14/15) had non-thrombotic neurological manifestations of APS, most commonly migraine, memory loss and balance disorder. Many also had livedo reticularis (11/15) and Raynaud’s phenomenon (nine of 15). In some patients, the autonomic manifestations improved with anticoagulation and/or anti-platelet therapy; in others they did not. Two patients with postural tachycardia syndrome who failed to improve with the usual treatment of APS have been treated with intravenous immunoglobulin with significant improvement in their autonomic symptoms.

Conclusion We believe that autonomic disorders in APS may represent an important clinical association with significant implications for treatment.

 

[stevesayshi]

Wow thanks that all sounds very familiar. I am wondering if you have had any luck with treatments? After a brief phone interview the naturopath Dr Berg recommended jumped straight away to ozone therapy which I am not so sure about -- don't know if my body needs more oxidative stress right now.

 

[alex3619]

Hmmm, this almost sounds like me. I don't have Raynauds, and I got my headaches under control a long time ago through diet, but I do have what sounds like livedo reticularis, which is a particular skin discoloration, particularly in the lower extremities. My feet are totally discoloured on the top, going up over the ankles, and no doc has ever been able to figure it out. I have moderate balance problems (as defined by the hospital) and definitely have memory issues. I will have to have this specifically investigated.

 

[Sidereal]

Wow thanks that all sounds very familiar. I am wondering if you have had any luck with treatments? After a brief phone interview the naturopath Dr Berg recommended jumped straight away to ozone therapy which I am not so sure about -- don't know if my body needs more oxidative stress right now.

Nope, no luck from conventional treatments (aspirin, prednisone) but I do think it's worth getting a rheumatology consult nonetheless to see if you have this and/or other autoimmune diseases. Autonomic dysfunction is common in various autoimmune diseases. See this for instance:

http://www.ncbi.nlm.nih.gov/m/pubmed/17432103/

I already had a diagnosis of OI/POTS before seeing a rheumatologist. He said he didn't know what that was but that in any case it doesn't go with connective tissue diseases. LOL, if only they spent even 20 minutes a day reading abstracts from their professional journals they wouldn't sound so foolish. Mind you, this is Europe, medicine here is free but abysmal, light years behind latest research. Maybe there are more clued in rheumatologists in the States?

Anything looks better than ME/CFS on the chart and will get you less abuse from MDs in the long run, even if the alternative diagnosis doesn't ultimately change your management (fixing leaky gut, pacing, supplements etc.)

 

[voner]

This may be of interest.

http://www.dysautonomiainternationa...-should-know-about-antiphospholipid-syndrome/

 

[stevesayshi]

Thanks guys, the more I read the more it seems like there's a whole lot of people out there whose symptoms are just thrown under the rug by the medical establishment. Sidereal, did you ever try heparin? It supposedly has beneficial effects on the brain and mast cell modulating properties
http://jcb.rupress.org/content/163/1/10.1
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2249.1997.4541471.x/pdf

 

[amaru7]

I also have tested Anti-Phospholipid Syndrome and got it. My internist didn't explain to me though, what it means

 

[Ema]

I'm actually just getting ready to start Lovenox. It supposedly also kills babesia as well...

 

[stevesayshi]

Amaru, it's potentially a serious condition. The links voner and Sidereal shared are very informative.

Ema, please let me know how it goes.

 

[Mya Symons]

I have been wanting to get tested for this for quite awhile, but can't get a doctor to do it. Can you tell me what the exact name of the test is. Please.

These studies are why:

http://journals.lww.com/bloodcoagul...igue_syndrome_and_or_fibromyalgia_as_a.6.aspx

http://europepmc.org/abstract/MED/9392689/reload=0;jsessionid=B57bSNo6sQpdzU09HG0j.20

http://link.springer.com/article/10.1007/BF01452251

Just had to add this last one because it is so confusing. It seems more than one study has found both anti-serotonin antibodies (or precursor antibodies) and anti-phospholipids antibodies in people with FMS or ME or both. However, this one says they found anti-serotonin antibodies but they randomly decided there is no diagnositic relevance for no apparent reason??? They do this a lot with ME/CFIDS and FMS, don't they? We found this but it can't have any meaning--it's just CFS or Fibromyalgia!!
http://www.jrheum.org/content/28/3/595.short

 

[Sidereal]

I have been wanting to get tested for this for quite awhile, but can't get a doctor to do it. Can you tell me what the exact name of the test is. Please.

It's a blood test where they measure a few antibodies. You may have one or more of these in APS. They can also occur in other diseases.

These antibiodies are: lupus anticoagulant, anti-cardiolipin and anti-β2-glycoprotein-I.[1]

http://en.m.wikipedia.org/wiki/Antiphospholipid_syndrome

Steve, no, I haven't tried heparin.

 

[Mya Symons]

It's a blood test where they measure a few antibodies. You may have one or more of these in APS. They can also occur in other diseases.



http://en.m.wikipedia.org/wiki/Antiphospholipid_syndrome

Steve, no, I haven't tried heparin.

Thank you! They offer one of these tests (anti-cardiolipin) at walkinlab.com.

 

[Ema]

I had the Esoterix panel for antiphospholipid syndrome...and it was totally negative. Phooey. That really would have tied together some symptoms for me.

But I think I'm still going to get to do the heparin...I probably won't find out now until after my appt in May though because I didn't have the right form for the ISAC panel.

 

[stevesayshi]

Thanks for the update. I hope you do get to try it.

 

[Wayne]

The following article by Ken Lassesen was eye-opening for me. Thought I'd post a link on this thread. The entire article is well worth reading if you like to hear about recovery / improvement stories.

Hughes Syndrome and Chronic Fatigue Syndrome

Adrenaline, commonly produced by stress, has a very interesting effect on many of these infections – New Scientist reported a 4000x growth over 24 hours with mycoplasma and chlamydia when adrenaline is present. Research from Australia found that a mycoplasma infection will cause viral infection re-activation (producing “mono” that never goes away).
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We know that not every one with CFS will not have a variant Hughes Syndrome – but we, and our MD(based on her testing of other patients), believe that over 70% of CFS patients does have this treatable condition.