Fibromyalgia Trial Shows Promise...For Chronic Fatigue Syndrome? Mast Cells and Ketiotifen in FM an

The difference between the two is actually the amount of rutin and quercetin they contain. Before buying either of the two NeuroProtek, maybe you could buy quercetin and rutin and see if you tolerate them well. If you do, then you know that you don't need the LP version. By the way, I am actually adding more quercetin to allow more of the luteolin in NeuroProtek to escape metabolism by the liver.

 

Ive been about 95% sure i have mast cell disorder for years but havent been able to find a doctor to pay attention to that thou one specialist did give me a blood test (which is unrealiable thou) to test me for it one time when I didnt have any symptoms at the time.

I once went to a doctor due to a strong darier sign on my arm .. I had a rash which suddenly developed a big blister when I touched it.. doctor just said she had no idea what it was (back then I didnt know about darier sign.. and this doctor tried to say maybe the rash area just got sunburnt but it wasnt that.. I hadnt even been in the sun and it happened on touch). I really really wish I'd taken a photo of it to take to a specialist to see.
For anyone who wants to see more what a darier sign looks like http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=991706671 has various photos of them.

Dermographism (which I used to get) also is a strong sign of mast cell disorder. (and I also have a family history of mast cell disorder .. my dads brother has systemic mastocytosis.. his mum has FM, his daughter who's on disability too has ME/FM but hasnt been diagnosed. Thou her doctors cant find a mast cell issue with her.. they wont give her a ME/CFS diagnoses thou she'd fit a canadian consensus criteria.. so her diagnoses is listed as "severe but unknown").

I personally think mast cell disorder may be a subgroup of ME/CFS as thou I know I probably do have mast cell disorder but still believe I do have also ME (I got severe mono when a teen.. also my ME was strong viral symptoms onset. My disease has progressed in the way Dr Cheney talks about ME doing). I believe the ME triggered the mast cell disorder off which I probably already carried a genetic trait for.

I'd like to point out something which was missed in Corts article. There was no mention of orthostatic HYPERTENSION also being a possible sign of mast cell disorder. I know there has been at least two POTS, orthostatic hypertension, mast cell activation studies done.. one which showed extremely high results of having a mast cell disorder if you have orthostatic hypertension and POTS while the other study found it at 38%

"In a recent study of patients with POTS in the context of disordered mast-cell activation, 38% (3/8) were shown to have orthostatic hypertension. Interestingly, in this group of patients, the orthostatic hypertension manifested as either a persistent hypertensive response to upright posture or as a hyptensive crisis, with BP as high as 240/140, with upright posture" (this quote come from under the part headed "orthostatic hypertension and dysautonomia") www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html

I get orthostatic hypertension of up to 170/138, along with POTS and did have FM so bad that I couldnt be touched for some time. (I dont now thou get FM)

 

Tania, I loved your post.

I remember being a kid with several weird symptoms and doctor's just couldn't really understand what was going on. Then, in my late teens, I had a terrible intestinal infection and that's when my "CFS" and "IBS" started. As such, and as of right now, I am somewhat convinced that infections may be triggers for the nastier aspects of MCAS. Given that "ME/CFS" is just a set of symptoms while MCAS is a real, testable condition, I feel compelled to disagree with you. However, I reserve the right to change my mind in the very near future!

 

I just came across a notice from the Mastocytosis Society that ketotifen was recently made available directly from the manufacturer with a doctor's prescription. You can read about it at their site http://www.tmsforacure.org/welcome.php. Just scroll down to the August 13th announcement.

 

So has anyone tried the drug, Ketotifen, that they are using in this study?

 

I've been taking ketotifen fumerate in the form of 1 mg. tablets since 2000, when I developed chronic idiopathic uritcaria and angioedema (caused by degranulating mast cells). It keeps the symptoms in check but does not completely eliminate them. I developed CFS/ME in 2010 while on a daily 2 mg. dose of ketotifen. Last December, because of a reaction to an antibiotic, I needed to increase my dose of ketotifen to 8 mg. a day for a month. I did not notice an effect on my CFS symptoms. However, I was feeling quite unwell due to the high-dose prednisone I also needed to take, that I'm not sure I would have noticed. I buy the ketotifen from a Canadian pharmacy with a prescription from a U.S. physician.

 

It's on sale in Spain http://www.vademecum.es/principios-activos-ketotifeno-r06ax17

I have been after Mastocytosis for a long time. The Mastocytosis Institute near Madrid (http://www.mastocitosis.org/) (one of the best in the world with an internationally leading Dr.Escribano) told me after seeing my tests and medical reports that I don't have it.

However when I spoke to him on the phone he told me that my history and symptoms matched pefectly and urged me to go there. Since I couldn't travel the 70km distance I sent my medical tests and reports by email and a member of his team reviewed them. She said I don't have it but advised me to try Cromoglicate, which I couldn't do because of a long story. Still, I insisted that I wanted at least to take more specific tests for mastocytosis and she refused. I explained her I have this wild dysautonomia along with the thousand respiratory, digestive or skin diseases and symptoms... but she still denied.

I will follow this with much interest. This is nothing new in CFS and probably it is not the cause neither the total picture or cure, but perhaps helps. I will try to get Ketofiten, which is very cheap here, by the way. In case it is sold free without a required prescription at the pharmacy I will buy it and give it a try.

Regards.

 

Bumping this great article ... Tc ... X

 

When I looked up the ingredients of Neuroprotek they are, Luteolin from Chomomile, Quercetin and Rutin.

So presumably you could take the ingredients separately, one at a time, increasing slowly to see the effect.

I'm going to order some chamomile extract today and see if it helps with the inflammation!

 

Hi Linda,

It's interesting that you bring up herbals today. I was just getting ready to post that I'm actually having better results from feverfew than I did from Neuroprotek.

Feverfew naturally contains both luteolin and quercetin and inhibits histamine release and prostaglandin synthesis (that takes care of 2 of the mast cells 100 mediators!). It's also about a quarter of the cost of Neuroprotek. You can even grow it in your garden and eat a few leaves every day, which I might just do. Here's an article about all that it does.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3210009/

I have ketotifen sitting on the shelf, but haven't tried it yet. Trying to test just one thing at a time.

 

Camas

Thanks for posting these links. I didn't realise feverfew had both Luteolin and querciten or I would have tried this first as it reduces the amount of 'stuff' to take and I already take enough.

I've just started the chamomile and will see what effects it gives.

As you say Neuroprotek is expensive as is Lutemax.

Linda