Help: scary relapse this weekend, fainting, rectal bleeding, nausea...

Hi Antares;

This Drugs.com link lists rectal bleeding as a possible GI side effect of NAC.
http://www.drugs.com/sfx/nac-side-effects.html

I've had bleeding problems from B12 deficiency, but not rectal.
I surely hope you find the cause, it is very frightening.

 

"Hopefully the implementation of the new health care law will ease this situation."

I do hope so, for all of you over there!

 

Thanks, Crux. I think the NAC contributed more to the drop in blod pressure. The severe bleeding started on Wednesday night, a good two days prior to taking NAC. I'm sure it contributed to some of the bleeding, but that started earlier.

This whole intestinal bleeding business has been going on almost as long as I've had CFS, but it used to be less common. Now it happens every few months. For the record, this increase of bleeding episodes started this January, alongside an increase in brain fog and cognitive issues (as if I didn't already have massive problems with that!)

I'm also B12 deficient, together with a number of other vitamin and mineral issues.

 

Large amounts of GI bleeding is indeed an ER issue, but if you don't have good coverage hopefully your GI doc can suggest a workaround (I had a specialist who did that for me after we figured out they didn't know what to do with me in ER for this one problem I was having).

On my Medicare Advantage plan it costs $65 to go to ER.

They should give you IV fluid to help you recover. (Besides doing testing to check to see how bad the bleeding is and what's causing it.)

I hope you feel better and figure it out.

 

PS one can always search "low-cost doctor" plus their city name, to find free clinics and clinics with sliding fee scales based on income

 

second attempt tp post . Now have new symp to add to the pile , intestinal bleeding with stool, quite a bit, kinda scary. I have added Levothyroxine, Lityium Orotate and Adrenogen in the last month but the reasch so far I'm not seeing any strong indication of bleeding as a side affect. Anyone take these currently or in the past and had this problem?

 

Anyone with blood in their stool should report it to their doc. And if it's enough to cause you to faint or feel like you're going to faint, make your chest hurt, or have problems breathing.........you need to go to the Emergency Room rather than waiting on hold for your doc! I have seen people die, quickly in some cases, from either throwing up blood or from rectal bleeding. Don't attribute it to the CFS.....because it's not a part of any criteria for ME/CFS.

Blood in the stool can be anything from benign hemorrhoids to fatal colon cancer. Also a bunch of other conditions. For the original poster, if your GI docs have not done it, there are tests where they inject special substances into the blood stream and can track from where in your gut you are bleeding from. How well the test performs though depends on your rate of bleeding.
http://www.medscape.com/viewarticle/747036_8

 

@Antares in NYC
Thanks for posting this. Did you ever get to the bottom of your rectal bleeding? (sorry for the inadvertent pun).

The reason I ask is that two days ago, I felt very nauseous and went to the toilet. The toilet bowl filled with a lot of blood and there were clots on the toilet paper. There was a bit of blood later in the day but nothing since.

This rectal bleeding wasn't caused by constipation and I have no history or indication of hemorrhoids. I had a colonoscopy about a year ago due to gut issues and all was clear. I have felt more tired than usual for the last two days and have high pressure in one ear and my head in general and a heaviness in my abdomen/kidneys. And a migraine today.

I haven't got to my doctor yet, but will. But I was interested to see your experience had similarities to mine and so am curious about what you might have found out.

I have been taking Florinef for a few weeks.

 

Hi Antares,

Kenny de meirleir told my daughter not to take NAC,because he said many of his patients didn't tolerate it.

As for the bleeding: my adult daughter ( ill,with CFS for 13 years now) has had four major GI haemorrhages, in the last three years. These required transfusions because she lost so much blood, and the hemoglobin dropped. During the first haemorrhage the blood came out like from a garden hose. It was frightening. She was resuscitated because BP dropped, etc. many tests were done and nothing acute was found! One diverticulum, was localized.

She has now relapsed from the last bleed and can't walk, and I need suggestions about that.

But the colour of the blood is also important. If it's dark it's from higher up the tract. You say yours was bright red, so it's lower down the tract.

Please go to emergency when the bleeding is constant,please. I know the hospitals aren't often what they should be in a civilized country,but you can ask for an RBC scan to locate the place. But this has to be done whilst bleeding. The fools in emergency didn't do this for my daughter, so now she carries a letter from a physician just in case.....

Please update...

 

Hi Hutan,

Well, several colonoscopies and endoscopies later we still don’t have a clear idea of what causes these strange bouts of profuse bleeding. The colonoscopies have at least discarded any scary problems. All of the tests, with the exception of finding a small polyp, came out fine. No major issues in upper or lower intestinal tracts.

What my gastro doctors have determined is that the intestinal bleeding may be the result of some sort of autoimmune mechanism. By carefully observing an elimination diet, I noticed that those episodes of intestinal bleeding tended to be more common after consuming dairy products. By just eliminating dairy (cow’s milk and cheese) from my diet, I have been able to reduce the frequency of those episodes dramatically.

Funny thing: two different studies show that I’m not lactose intolerant, so it’s not a reaction to that specific milk protein.

One of my doctors said that given my condition (ME/CFS, Lyme) my immune system could be overreacting to something in dairy that reminds it of whatever pathogen I’ve been fighting for 16 years. That may be the case.

I have noticed that, in addition to dairy, sometimes a very stressful situation also brings an episode of severe gastric bleeding.

So in conclusion, not sure we have a full picture of what’s causing this problem, but it may be related to the immune dysfunction at the core of ME/CFS. Changing my diet has helped curb the number of occurrences considerably., but it still happens every few months. Hope it helps.

 

Hi folks,
This discussion is very important because Gi bleeding is not associated with CFS. And yet, here we have people who do experience this nightmare. And if I'm guessing correctly, these people did not bleed prior to getting sick. What you highlight, Antares, is very interesting: could the immune system be the partial reason. I don't know. My daughter doesn't take any diary, and she bled too many times and too dangerously.

 

I used to bleed all the time. I was young and ignored it. Mine was from too many antibiotics. I think they are part of the reason that my body collapsed.

 

Maybe you're having a reaction to something un-natural that is in the milk. Anti-biotics or medications given to cows which then pass into the milk (if non-organic), or residue from cleaning products used on industrial milking machinery, or maybe even the type of plastic container used to store the milk, cheese, or other dairy products. Or to get really tricky, maybe one of the previous items listed is interacting with one of your supplements.

Nice that you've found a way to reduce the reactions.

 

This is gripping stuff! I want to know what the medics conclude. But fibre optic equipment won't get far into the small intestine. So maybe the haemorrhage is from there.

Hope you get sorted out soon. Good luck.

 

Interesting new stuff I have discovered:

In recent weeks I have visited two new doctors, including a prominent Lyme specialist and Chinese herbals specialist. Both told me different theories about the unusual intestinal bleeding, and wanted to share them in case it helps some other folks around here.

- The Lyme disease specialist told me that he doesn't see that often, but on occasion he saw a couple of Lyme patients with severe and random bouts of intestinal bleeding. He said this can happen if Bartonella, one of the nasty Lyme co-infections, gets to settle in your intestine. I happen to test positive for both Lyme and Bartonella (my titers for Bartonella were very high, like 3 times as high as the norm). Bartonella is known for producing nasty IBS symptoms.

- The Chinese herbalist -also specialized in Lyme and CFS- told me he thinks it's an autoimmune reaction. My immune system is exhausted and hyperactive, after fighting these many infections at once for so many years. Anything that may remind my immune system of any of those pathogens (maybe a protein in food that may resemble any of the outer proteins of those pathogens) will send my immune system into overdrive and attack the lining of my digestive system.

Both interesting theories, not sure which one is right, but I thought I would share.

 

Hi everyone, just a quick update on the mysterious intestinal bleeding with no apparent cause. I hope this info helps:

So my new Lyme doctor said he's seen intestinal bleeding with bartonella, a common Lyme co-infection that I happened to test positive. As I explained before, since my GI troubles started a few years ago, I became increasingly deficient in all sorts of nutrients: B12, D, C, Magnesium, Zinc... My gut is no longer absorbing these nutrients, or something else is robbing them from me (infection).

Interesting development: a new test also shows I'm deficient for vitamin K too! Lack of vitamin K produces profuse bleeding and the inability to properly coagulate wounds. This would go a long way to explain some of the bouts of profuse bleeding. It's worth checking.

 

Thank you for the update. It interesting and encouraging to see your progress. Hopefully you'll soon have the problem solved and be on the way to better health.

 

One quick recommendation: I switched to a brand of probiotics that is highly recommended for people with IBS problems, and I have to say it has helped considerably (alongside small doses of vitamin K) in reducing those random bouts of intestinal bleeding:

VSL3 Probiotic:
http://www.amazon.com/gp/product/B0014R4RZW

It's more expensive than other brands, but in my case it has helped reduce the problem noticeably.

Hope it helps.

 

@Antares in NYC that's great you've seen big improvements with Vit k and the probiotic! Have you read the resistant starch thread around here? It seems to be a huge help for a lot of people with stomach problems and autoimmune disorders. Lots of people are taking that bobs unmodified potato starch that's only $4 a bag. Thought it might be worth mentioning to you.