ME/CFS is a mast cell disorder (hypothesis)

[adreno]

I have been taking NeuroProtek for almost a month now, with an interruption of a couple of days while waiting for a shipment. For me, this stuff works! Those two days without NeuroProtek were absolutely terrible, with extreme fatigue and terrible brain fog. Once I restarted the NeuroProtek, things returned to "normal". I am not cured but life is much more bearable now. I take the maximum recommended dosage of 9 caps/day, three caps one hour before each of the three meals.

Good to hear that it works for you. Since luteolin on it's own had no effect, isn't it reasonable to presume that it is mainly the quercetin that is working for you? Did you ever try quercetin on it's own? Of course, there is also the possibility of a synergistic effect.

 

[nanonug]

Since luteolin on it's own had no effect, isn't it reasonable to presume that it is mainly the quercetin that is working for you? Did you ever try quercetin on it's own?

I did try quercetin, with and without bromelain. The latter helps quercetin's lousy bioavailability. In both cases, got no response and I took a ton.

there is also the possibility of a synergistic effect.

That and possibly the liposomal formulation of NeuroProtek.

 

[place]

Very interested in this. So... you were less tired. I have done well with the methlylation but I still have sinus issues. So if I have a bad sinus day, no amount of the b's is going to get up and going. Do you/have you had allergies or MCS or other type symptoms in the past that were reduced while on NeuroProtek?
Thanks!

 

[nanonug]

Do you/have you had allergies or MCS or other type symptoms in the past that were reduced while on NeuroProtek?

Yes, I do have allergies, including to all food I put in my stomach (possibly due to decades-long acid suppression). I also have constant rhinitis and almost constant sinusitis. Sinus pain is absolutely horrible and the only thing that helps are steroids which I take daily. Right now, I don't feel courageous enough to stop the steroids and see what happens...

 

[nanonug]

From Mastocytosis Society Canada Medical Lecture – June 6, 2011 (slide 4). Very funny and so very true!

 

[place]

For me, its all about the sinuses. I could be dead tired, emotionally sad, just not feeling good. Then I go clean them out and within 15 seconds--- yes seconds, I'm good to go. I feel good and have energy. I take 1200 of mucinex and two hours later flush it out. When its really bad I jump on the trampoline to force it out, and it works really well too! I have been battling them for 15 years and now its just a nuisance but it would be great to get rid of it! I have tried quercetin but with no effect. Im going to look into it.

 

[searcher]

@place- that's exactly how I feel. If my sinuses are a mess my brain is a mess and I can't function no matter what I do. Stimulants occasionally help me when my sinuses are clear, but only make things worse when they are stuffy. Sudafed has helped in the past but I don't like to take it too often since it's over-stimulating. I tried quercetein+bromelein last year after I first saw Dr Theo speak and read his research, and didn't get any effect. Neuroprotek is pretty expensive at full-dosage (which is why I tried the much-cheaper straight quercetin), but sounds like it's worth a try as there is nothing else on the market with this exact combination.

On a related note, I remember talking to a few fellow patients and several of us used to get hives when we exercised before we had CFS. It started for me when I was I was in high school; if I went running, my legs would get really itchy hives that would take hours to clear up. It only happened when I ran, which made me think it was linked to my heart rate staying high. I never had it when I played tennis, so it wasn't due to sweating or general exercise. I never knew anyone else who had this experience so I was surprised when it turned out several other patients had it.

 

[camas]

Thanks so much for posting all of the info and links, nanonug. I have, or have had, most of the symptoms described including the freckle-like skin lesions on my arms, legs, and back that flare when I do. They turn red and itch after a shower and after I've been in the sun, just as described in one of those videos. One doctor biopsied them and found nothing, but that was decades ago. Another suggested they were tinia veriscolor, but antifungals have no effect.

Also of interest is that the only drugs I've found helpful are klonopin and a child's dose of zyrtec. I notice that both are used in the treatment of the mast cell disease. Needless to say, I've printed out a ton of info for my doc and have ordered the NeuroProtek. Sure worth a shot!

 

[jeffrez]

Anyone try baicalensis or high dose nettle for this?

 

[jeffrez]

Forsythia is a component of many chinese anti-allergy remedies.
In Vitro Cell Dev Biol Anim. 2007 Jul-Aug;43(7):215-21. Epub 2007 Aug 25.
Observations of Forsythia koreana methanol extract on mastcell-mediated allergic reactions in experimental models.

Choi IY, Moon PD, Koo HN, Myung NY, Kim SJ, Lee JH, Han SH, Moon G, Seo SY, Sung HJ,Park RK, Jeong HJ, Um JY, Kim HM, Hong SH.
Source

Department of Pharmacology, College of Oriental Medicine, Institute of Oriental Medicine, Kyung Hee University, 1 Hoegi-Dong, Dongdaemun-Gu, Seoul 130-701, South Korea.
Abstract

To explore effects of Forsythia koreana methanol extract (FKME) on mast cell-mediated allergic and inflammatory properties, the effect of FKME was evaluated on compound 48/80-induced systemic anaphylaxis, ear swelling, and anti-dinitrophenyl (DNP) immunoglobulin E (IgE)-induced passive cutaneous anaphylaxis (PCA). In addition, the effect of FKME was investigated on the histamine release from rat peritoneal mast cells (RPMCs) stimulated by compound 48/80, which promotes histamine release. The human mast cell line HMC-1 was stimulated by phorbol 12-myristate 13-acetate plus calcium ionophore A23187. Activated HMC-1 can produce several proinflammatory and chemotactic cytokines such as tumor necrosis factor-alpha (TNF-alpha), interleukin (IL)-6, and IL-8. Cytokine levels in the culture supernatant were measured by an enzyme-linked immunosorbent assay. Cytotoxicity by FKME was determined by a 3-(4,5-dimethylthiazol-2-yl)-diphenyl-tetrazolium bromide (MTT) assay. FKME inhibited compound 48/80-induced systemic anaphylactic shock and ear swelling in mice. When 1 g/kg FKME was pretreated or posttreated with mice, compound 48/80-induced mice morality was 50 and 66.7%, respectively. One gram per kilogram of FKME pretreatment inhibited ear-swelling responses derived from compound 48/80 by 29.75%. A PCA reaction was inhibited by 17.9%. In an in vitro model, FKME (1 mg/ml) inhibited histamine release from the RPMCs by 13.8% and TNF-alpha, IL-6, and IL-8 production from HMC-1 cells by 71.16% (P < 0.001), 86.72% (P < 0.001), and 44.6%, respectively. However, FKME had no cytotoxic effects on cell viability. In conclusion, FKME inhibited not only systemic anaphylaxis and ear swelling induced by compound 48/80 but also inhibited a PCA reaction induced by anti-DNP IgE in vivo. Treatment with FKME showed significant inhibitory effects on histamine, TNF-alpha, IL-6, and IL-8 release from mast cells.
Inflammation. 2003 Jun;27(3):129-35.
Forsythia fructus inhibits the mast-cell-mediated allergic inflammatory reactions.

Kim MS, Na HJ, Han SW, Jin JS, Song UY, Lee EJ, Song BK, Hong SH, Kim HM.
Source

Department of Oriental Pharmacy, College of Pharmacy, Wonkwang University, Iksan, Jeonbuk, 571-749, South Korea.
Abstract

Mast cells are key as effector cells in the early phase allergic inflammation and in diverse immunological and pathological processes. Forsythia fructus (F. fructus) has used as a traditional medicine for inflammatory diseases. In the present study, we determined the effect of F. fructus extracts on compound 48/80-induced paw oedema and vascular permeability in vivo. In addition, we investigated in vitro whether F. fructus has inhibitory effects on compound 48/80-induced histamine releases from rat peritoneal mast cells (RPMC), and on phorbol 12-myristate 13-acetate (PMA) plus A23187-induced tumor necrosis factor-alpha (TNF-alpha) releases from human mast cells (HMC-1). In mice orally administrered F. fructus (100 microg/g) for 1 h, compound-48/80-induced oedema and vascular permeability were significantly reduced rather than those receiving intravenous injection of ketotifen, mast cell stabilizer. F. fructus dose-dependently inhibited the histamine release induced by compound 48/80 from RPMCs. Moreover, F. fructus had no cytotoxic effects on cell viability and had inhibitory effects on TNF-alpha secretion from HMC-1. These results suggest that F. fructus is a potential herb medicine for treatment of inflammatory diseases through downmodulating mast cell activation.

 

[camas]

I'm on day 4 of Neuroprotek with no noticeable effect which I take as a good sign after my short misadventure with MAF 878. I may have to take out a second mortgage to do it, but I'm committed to a two month trial. The more I read in Mastocytosis support groups, the more commonalities I find.

 

[alex3619]

Hi nanonug, in reply to the picture in post 45, that is very much what has been happening for decades. Many people who make a discovery say this one must be the cause, or the most impotant issue, or whatever. I usually use a diamond analogy because diamands have a lot of facets and ME or CFS have so many different findings. I have used the elephant analogy before, its a classic in philosophy, but its very nice to see this displayed in a cartoon.

However, unless the cause has multiple necessary factors causing it then sometime somebody is going to be right. If its multiple factors leading to a cause, then I think it more likely that different researchers will get a piece of the puzzle then realize its the same puzzle, and snap the pieces into place so we can get the big picture.

Bye, Alex

 

[merylg]

Anyone have slightly elevated IgA? I do...my main areas of inflammation are mucosal: nasal septal lining/sinuses, bronchial tree/lungs, stomach...and spinal (Cervical & Lumbar)...with general FM, mod-severe MCS, mod cognitive neuro symptoms, mod fatigue. Tomatoes cause joint pain in foot. Eggplant & drug Plaquenil cause painful joint swelling at base of thumb. Plaquenil gave me severe deep bone pain in cheeks & extreme facial flushing reaction...this seems like a mast cell reaction...in retrospect. It was accompanied by a red blotchy rash on arms & legs.

I test neg for basic tests for a Mast Cell Disorder, but as was pointed out the tests are limited.

Here's an interesting publication relating to Mast Cells, B Cells & IgA

http://www.ncbi.nlm.nih.gov/pubmed/20101023

 

[fozzaw]

Anyone try baicalensis or high dose nettle for this?

I tried New Chapters scutellaria baicalensis for four months and it really worked well for inhaled allergies, much better than quercetin did (1 capsule a day worked much much better than 3 or 4g of quercetin). I don't remember if it helped with reactions from ingested allergens. This was all before I knew I was high histamine or anything about methylation. I've since found that 20-30mg of manganese a day works almost as well as the skullcap, and 200mg of SAM-e in addition works even better but only for 4-6 hours. SAM-e allows me to tolerate leaf mold which makes half my body weak and lose coordination, the others aren't quite strong enough. I haven't tried the skullcap since but would like to. I just don't know the mechanism of why it worked.

The reason I tried it was that it was safe for people with liver damage, and fortunately I had no MCS or allergic reaction to it. I couldn't tolerate nettle.

 

[alex3619]

Allergies and chemical sensitivities are not the same thing. The gut immunology of all these is a balance of different factors. While mast cells are indeed implicated, they work in conjunction with other parts of the immune system. A huge allergy suppression factor in the gut is from gamma delta T cells. There is evidence that we have something wrong with them too. I am investigating the literature and hope to write a blog on this soon. It may be that the mast cells are fine, but the systems which suppress them are not working. Bye, Alex

 

[jeffrez]

Thanks for the info, fozzaw, all very interesting. Might try some manganese based on your comments.

I used to take S. baicalensis off and on (the worst tasting herb I've ever tried), but it was just one cap a day and I wasn't sure it was doing anything (I have New Chapter, too, seems like a good brand). I take eleuthero now, it's been a really good herb, think I'm going to add some baicalensis back in again at a higher dose.

Evid Based Complement Alternat Med. 2012;2012:673145. Epub 2012 Jan 5.
A Herbal Composition of Scutellaria baicalensis and Eleutherococcus senticosus Shows Potent Anti-Inflammatory Effects in an Ex Vivo Human Mucosal Tissue Model.

Zhang N, Van Crombruggen K, Holtappels G, Bachert C.
Source

Department of Oto-Rhino-Laryngology, Upper Airway Research Laboratory (URL), Ghent University Hospital, De Pintelaan 185, 9000 Ghent, Belgium.
Abstract

Background. Patients seek an effective alternative to pharmacotherapy including herbal treatment options for allergic rhinitis and rhinosinusitis. Material and Methods. Nasal mucosal tissue was obtained from 12 patients, fragmented, preincubated with tissue culture medium, S. baicalensis and/or E. senticosus and/or vitamin C (each compound 0.2 μg/mL and 2 μg/mL) for 1 hour at 37°C/5% CO2, and stimulated with anti-IgE for 30 minutes and 6 hours to imitate the allergic early and late phases. Furthermore, Staphylococcus aureus superantigen B (SEB) stimulation for 6 hours was used to imitate T-cell activation. Results. The combination of S. baicalensis and E. senticosus had a more potent suppressive effect on the release of PGD2, histamine, and IL-5 than S. baicalensis alone. The combination also resulted in a significant inhibition of SEB-induced cytokines comparable or superior to an established topical corticosteroid, fluticasone propionate. Vitamin C increased ciliary beat frequency, but had no anti-inflammatory effects. Discussion. The combination of S. baicalensis and E. senticosus may be able to significantly block allergic early-and late-phase mediators and substantially suppress the release of proinflammatory, and Th1-, Th2-, and Th17-derived cytokines.

 

[camas]

Saw a dermatologist today to have the freckle-like lesions I've had for 30 years with no diagnosis checked out yet again. I mentioned urticaria pigmentosa, and when he saw them he was as excited as a pig in slop! Did a couple of punch biopsies and took a lot of photos for his students up at OHSU (oh, yay). He promises they won't end up on the internet. Better not considering what he photographed.

He says he can't be 100% sure but he believes it is telangiectasia macularis eruptiva perstans (TMEP) which is a rare form of cutaneous mastocytosis. He's only seen one other case in his career. I also have dermographia. The marks he made on my back are still itching seven hours after the fact.

They have to use special dyes to check the biopsies for mast cells which takes a little longer, so I probably won't know anything for two weeks. In the meantime he said to stay on my zyrtec and not go anywhere without my epipen. Duh! He did tell me that I was a smart patient though. I just gave credit to you all.

 

[lansbergen]

Allergies and chemical sensitivities are not the same thing. The gut immunology of all these is a balance of different factors. While mast cells are indeed implicated, they work in conjunction with other parts of the immune system. A huge allergy suppression factor in the gut is from gamma delta T cells. There is evidence that we have something wrong with them too. I am investigating the literature and hope to write a blog on this soon. It may be that the mast cells are fine, but the systems which suppress them are not working. Bye, Alex

When first line defense fails, second line defense has to work harder.

 

[lansbergen]

http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/B/B_and_Tcells.html#Gamma_Delta

Curiously, many of the antigens to which γδ T cells respond are found not only on certain types of invaders (e.g., Mycobacterium tuberculosis, the agent of tuberculosis) but also on host cells that are under attack by pathogens.

 

[lansbergen]

http://www.google.nl/imgres?imgurl=...X&ei=xks3UJ6VN46DhQeMpIHgCg&ved=0CCgQ9QEwBTgK


Functional plasticity of human gamma/delta T cells

Our work implies that Vg9/Vd2 T cells are much more versatile than initially thought; not only that they can directly eliminate cells that are infected by pathogens and kill cancer cells, they can also coordinate the action of other immune cells.

The same gamma/delta T cell population may readily and rapidly assume distinct Th1- and Th2-like effector functions, and potentially provide B cell help in secondary lymphoid tissues.

Even more, Vg9/Vd2 T cells also acquire features of professional antigen-presenting cells (APCs) and induce primary responses of naive CD4+ and CD8+ alpha/beta T cells.

The unanticipated functional plasticity of gamma/deltaT cells is reminiscent of, and may even exceed, that of conventional T cells.

These findings suggest that gamma/delta T cells profoundly influence the complexion of the immune response

Dysregulation of gamma/delta T cell function may thus affect pathogen clearance, and lead to inflammation, allergy, and autoimmunity.






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