90% cured from bed bound with Histrelief / Histame / Daosin

[Sushi]

Hi Sushi
I'm also taking GcMAF and the hydroxy B12 injections.

I'm still having allergic type reactions to the Nexavir injection sites, despite stopping for a bit and then titreing up again from a small dose.

Curiously, I've also noticed a worsening of vertigo/ OI symptoms that seem to correspond to increasing B12 doses. I had trouble injecting B12 as I found it very painful but am now using xylocaine at the injection site and have increased the dose to 2 mls 3/wk. Not sure if this is the cause of my worsening vertigo/OI, but very interesting that you're experiencing this symptom too!

Hi Girl,

Hopefully they will get the phenol out of the Nexavir so you won't have reactions at the injection site. I'm not sure what country you are in, but the B12 that people are getting in Belgium--everyone is reporting that the injections are painful. The Hydrox B12 I am getting in the States is not at all painful--for me or others.

I would just like to figure out which of the 3 is causing vertigo! It was definitely better when I skipped a couple of days of B12 and Nexavir. Yesterday I took half doses of both. Maybe I'll try taking a full dose of Nexavir and a tiny dose of B12 and try to narrow down the causes.

Thanks for your input. I am injecting the Nexavir by pulling up a fold of belly fat and injecting straight down with a half inch, 30 gauge needle. I get about 10 minutes of a bit of redness and itching, but I guess I don't react so much to phenol.

Best wishes,
Sushi

 

[Valentijn]

I get a little loopy if I have too much B12 at once. I do sublingual, and if I take 2 at once, or within an hour or two of each other ... yikes! So I be sure to space them out by 3-4 hours.

 

[girlinthesnow]

Hi Sushi

Yeah, it's a hard one to figure out when there are so many different inputs and a corresponding large number of symptoms...

I'm sort of relieved that all the Belgian B12 is painful! I worried that I was just being wimpy...
The xylocaine is not really helping as the pain is not at the injection site as such but appears as severe muscle pain somewhere else nearby in my leg. I'm not able to walk for an hour or so afterward. I thought it was myofascial trigger point induced referred pain?

I titred up again as the B12 is wasted if not injected as it's in a glass vial broken open. I might try to source elsewhere. Is it definitely hydroxycobalamin and not methyl that others are taking and finding pain-free?

On reflection, I think the symptoms associated with B12 are more like 'wired brain' symptoms, a kind of swishing sensation if I move my head, not sure of where I am in space rather than vertigo as such.

It's good that you're not reacting to the phenols. Hopefully a phenol-free nexavir will be manufactured soon and eliminate this problem altogether.

Do you react to histamine rich foods? This problem has been greatly exaggerated for me since starting nexavir, alot of foods that I could tolerate before now cause brain inflammation, in particular even tiny amounts of chocolate.

As far as the vertigo, IO is concerned, when brain inflammation is bad, I have to be horizontal or just fall over,black out etc. This is certainly worse since titreing up to a full dose of nexavir again. So the connection for me, seems to be nexavir = histamine= brain inflammation=OI, etc. But I am not sure... really too brain inflamed to work it out. I'm seeing KDM next week so will try to go through this with him and see what's what.

Sorry for the confused and confusing answers!

All the best to you,

girlinthesnow

 

[Mij]

"the B12 that people are getting in Belgium--everyone is reporting that the injections are painful. The Hydrox B12 I am getting in the States is not at all painful--for me or others."


Years ago I had a Hydroxy B12 solution made up for me at a compounding pharmacy and it was very painfull so I called the chemist to ask what the problem might be and she told me that it was probably the water based preservative they used so they made me a new batch with a saline base and it was no longer painfull.

 

[Sushi]

Hi Sushi
...
I'm sort of relieved that all the Belgian B12 is painful! I worried that I was just being wimpy... ...
Is it definitely hydroxycobalamin and not methyl that others are taking and finding pain-free? ...

Do you react to histamine rich foods? This problem has been greatly exaggerated for me since starting nexavir, alot of foods that I could tolerate before now cause brain inflammation, in particular even tiny amounts of chocolate.

As far as the vertigo, IO is concerned, when brain inflammation is bad, I have to be horizontal or just fall over,black out etc. This is certainly worse since titreing up to a full dose of nexavir again. So the connection for me, seems to be nexavir = histamine= brain inflammation=OI, etc. But I am not sure... really too brain inflamed to work it out. I'm seeing KDM next week so will try to go through this with him and see what's what.

Sorry for the confused and confusing answers!

All the best to you,

girlinthesnow

Hi Girl,

Yes, the B12 that I and others are getting in the States is injectable hydrox at a dilution of 5mg per ml. It really doesn't hurt at all! I inject it very slowly though. The post that came after yours might give an explanation.

I have tried cutting the B12 in half to see if that is causing the vertigo. It is definitely less on a half dose--but it could be a synergistic reaction with Nexavir and GcMAF.

When you see KDM next week, I'd love to hear what he says about this problem. Mine is true vertigo--room spinning upside down so that I have to hold onto something so as not to fall over. But I have always had ear sinus infections so something may be being "fixed" in my inner ear. It only happens when I go quickly from lying to sitting or standing.

I'm not sure about the histamine free foods. I usually avoid chocolate as it can provoke a migraine. I am about to try Daosin or Histame to see if it helps.

Best wishes!
Sushi

 

[globalpilot]

Xlynx , May I ask how much you paid for the test ? I ask because I was able to locate someone in Canada who does the test but the cost is $295. If it is much cheaper in the UK, I may send my blood there.

Also, I sent you a private message.

 

[undcvr]

Hey Xlynx, did Betaine HCL ever work for you ? It helps me and I always thot that the way behind how it worked was that the HCL would break down all the histamine containing and producing foods.

 

[sandralee]

Hi everyone,

I would like to let everyone know about something that has worked well for me for the past 6 months.

I am aware that everyone on this forum has very different needs and I think after having been a member for over a year I know I have tried protocols that worked for others that didnt work for me but this is something that has really worked for me.

It has worked so well I am actually in amazement. After having had tried every supplement (almost ) out there I want to share this with anyone that may have similar symptoms to me.

My main symptoms are:

Anxiety, palpitations, extreme fatigue, confusion, inflammation, dizziness and air hunger. At my worst I was bed bound / wheel chair bound for a year and a half.

The most obvious reactions I have had are to B12 (within 30 mins of ingesting I can be completely wiped out for hours) although I could tolerate it initially (for a few months until the reactions started) and can react to different foods at different times but nothing consistent. I did even manage to build up some tolerance to B12 but was always detrimental to me (although I am aware other have had great success with this and don't wish to undermine this treatment at all).

By taking histrelief or Daosin (histame in the US) has given me a 90% recovery.

Taking this product has had a very obvious effect quickly. I could tell from my first week that something was happening (it did take 3 months to see the full effect but was obvious for me the whole way through).

I was diagnosed by Dirk Budka (to whom I am forever grateful, I am in london!).

The key difference I have noticed between histrelief (is in patient trial stage only) and daosin (available online) is that histrelief seems to have a much more long term effect where as daosin is very much just for the small period in which you take it before a meal but still works well.

Before becoming ill I suffered for several years with my intestines and stomach and so I always felt that my illness stemmed from my digestive system. As my illness progressed it was very hard to tell what was causing it as I had so many symptoms I started to believe it could be anything even psychological.

Hi Xlynx and the group,

I started Histame today. I haven't had any tests and it wasn't recommended by a doctor, but I'm at the stage where I'll try anything if I think that someone with similar syhmptoms to me has had success with a treatment.

I know that this supplement must be taken in conjunction with a low histamine diet, but can anyone give me an accurate food list apart from the undisputed ones such as fermented and aged foods, processed foods, alcohol, tomatoes and spinach. I'm aware that there are histamine containing foods, histamine releasing foods, and DAO reducing foods, all of which have an impact on histamine levels, but the lists on the net however, are somewhat contradictory. For example, are eggs, nuts, bananas and coffee in or out.

I know that Histame is supposed to be taken when ingesting those foods to which you know that you have a reaction, but like Xlynx, my food responses are so inconsistent and variable, it's hard to work out who the real culprits are.

Has anyone else started Histame or Daosin, and if so, how are you going with it? Are you taking anything to enhance the effects of DAO? Have you had any side effects?

If my usual pattern is anything to go on, I should know by the third day if I can tolerate it or not.

Any feedback from anyone would be very much appreciated.

Best wishes,

Sandra

 

[xlynx]

globalpilot

Sorry I have been on the site for a couple of weeks.
I will find out on the test and let you know.


undcvr

Betaine HCL is something that I was never sure about. It never gave me problems and at one stage I though it had slowed down my burping but it is something I may give it another shot as I never continued it for more than a few days at a time. How long did you use it before you felt the results and how do you know how many to take?

sandralee

Before taking histrelief etc I would react to almost anything and without a great deal of pattern and logic.
Initially I really cared about the diet and watching for histamine products. Now I just see how each food effects me. I think you will know very quickly is a food does not agree with you, up to several hours after eating it (some people say more than that but it is always quick for me). I particularly had serious issues and still do have small issues whilst on the supplement with pineapple, dates
too many nuts in one sitting, too much tomato based products and mouldy soft cheese. Funnily beer does not effect me but wine and champagne is more of a problem. However if this does work for you like it did for me as soon as you body stops reacting to just everything it should become clear.

However the tablets work so well that if I want to indulge I take 3 or so and have very few effects.

The main issue in my mind now is why I am struggling with histamine so much.

I even find that when I wake up in the morning feeling a little groggy if I take one on an empty stomach it helps. I think it must be due to bacteria in the intestine producing histamine but I have no clue really. I have at so many times though I knew what was wrong with me but didn't .

 

[maryb]

xlynx - did you suffer from MCS as well?
Sandralee - I've been buying freshly cooked chickens from my local supermarket for a couple of years, I now know that as soon as food is cooked it starts releasing histamine so its been the worst thing for me to do. I now buy just a breast or leg and eat it straight away if I don't feel like cooking. Ready meals are a no no for that reason(not that I eat them)Its bad that the sickest people need the freshest food cooking, how the hell do we do it, its a nightmare.
I've found any type of berry - strawberry, raspberry (which I love) are histamine inducers. I ate 2 raspberries on Saturday and within two hours I was dizzy and my left eyelid had drooped a few centimetres, this last happened 2 years ago when I ate a couple of strawberries. You really need to see a good person to go through your diet or become your own detective.

 

[sandralee]

Hi Xlynx,

Thanks very much for your response. It was really helpful. Well, I'm keeping my fingers crossed.

Best wishes,

Sandra

 

[sandralee]

Hi Maryb,

Thanks for the tip about the chicken. I've been doing the same thing myself for years. It's just really so hard when you don't have the energy to cook.

I think I'll have to work it out myself, as I now realise that the diet I was prescribed has turned out to be all wrong for me. Would you believe that the only fruit I was supposed to be eating was berries?

Best wishes,

Sandra

 

[undcvr]

I felt that when ever I took Betaine HCL (Betaine:TMG), I felt much better than taking TMG alone. Also I really havent found an upper limit to how much Betaine HCL I can take. I hv noticed this in some other pple with CFS as well. It seems to fit the theory that pple with CFS do not produce enough stomach acid and have to be supplemented. With enough HCL to go with each meal, the HCL will be able to break dwn either histamine containing or producing foods. Further the TMG in Betaine can go on and be methylators in the bloodstream.

I am suggesting this since you respond to Histame so well and it is not a cheap product. I thought that Betaine HCL might help too.

"The main issue in my mind now is why I am struggling with histamine so much.

I even find that when I wake up in the morning feeling a little groggy if I take one on an empty stomach it helps. I think it must be due to bacteria in the intestine producing histamine but I have no clue really. I have at so many times though I knew what was wrong with me but didn't . "

If i may, my advise is to not think about it at all, otherwise it would drive you crazy. In the beginning i was struggling with CFS, after that I was struggling with why i had the symptoms and why it took so much of drugs to find me any relief. I finally decided to be kind to myself and not be so hard on myself as to why I was suffering from all these conditions.

Life is already so hard, no need to make it even harder for myself I decided.

 

[xlynx]

maryb

I would definitely agree with the berries, strawberry and raspberry are issues for me also.

undcvr

I think your right, its better not to worry about why and just appreciate that it works . I will definitely try betain hcl again.

I have seen that it has been mentioned in this chat to try and take b2, b6 and copper as co factors for producing dao (or at least that what I am understanding) Unfortunately I cannot tolerate copper supplements, don't know why but they just make me feel worse, same problem with zinc. Maybe trying with the hcl will improve things.

 

[illsince1977]

Has anyone else started Histame or Daosin, and if so, how are you going with it? Are you taking anything to enhance the effects of DAO? Have you had any side effects?

If my usual pattern is anything to go on, I should know by the third day if I can tolerate it or not.

Any feedback from anyone would be very much appreciated.

Best wishes,

Sandra

I'm reading this thread with interest and thinking of trying Histame, as well.
Sandralee, my feedback is that it often takes 3 days for me for it to be apparent that something agrees or disagrees with me, or to "get over" something. Interesting that anyone else has noticed that.

 

[Sushi]

I justed started it yesterday. Haven't noticed anything yet though.

I'll let you know if I do!

Sushi

 

[zoe.a.m.]

I've been following this thread and bought a box of Histame but I'm not sure (maybe I've misunderstood some posts or just am not retaining what I am reading?!) if one has to be on a special diet in order to use this?? I thought it was for general intolerances/reactions to food--maybe especially helpful for people who don't know exactly what they are reacting to b/c they react to everything, or nothing in a clear way... Which is right? I'm worried about taking it and not doing whatever it is that ME/CFSer's need to know about it. Thanks!

 

[sandralee]

I'm reading this thread with interest and thinking of trying Histame, as well.
Sandralee, my feedback is that it often takes 3 days for me for it to be apparent that something agrees or disagrees with me, or to "get over" something. Interesting that anyone else has noticed that.

Hi Illsince 1977,

Well, I'm at the end of day 5, and I definitely have a little more energy than usual. I haven't experienced any side effects, which is really unusual for me. So far there has not been any improvement in gut function, but it's still early days.

It might be worth giving Histame a go.

Best wishes,

Sandra

 

[sandralee]

I justed started it yesterday. Haven't noticed anything yet though.

I'll let you know if I do!

Sushi

Hi Sushi,

I've been on Histame for 5 days, with some improvement in energy, which I didn't notice until day 4. I'll be interested to hear how you go with it.

Best wishes,

Sandra

 

[sandralee]

I've been following this thread and bought a box of Histame but I'm not sure (maybe I've misunderstood some posts or just am not retaining what I am reading?!) if one has to be on a special diet in order to use this?? I thought it was for general intolerances/reactions to food--maybe especially helpful for people who don't know exactly what they are reacting to b/c they react to everything, or nothing in a clear way... Which is right? I'm worried about taking it and not doing whatever it is that ME/CFSer's need to know about it. Thanks!

Hi Zoe,

It is sometimes suggested that Histame be taken in conjunction with a low histamine diet. As Histame is designed to break down histamine in the body, it makes sense not to add to your histamine levels by ingesting histamine promoting foods.

I'm only new at this myself, so I'm reluctant to offer advice, but I wouldn't let the whole diet thing stop you from starting. Take a look at post #49 by Xlynx, and it might make things a bit clearer. Xlynx is the expert on this issue here.

Maybe others can chime in as well.

Best wishes,

Sandra