unrelenting flu feeling

[Avenger]

Dear think tank,
Thank you for this information. You describe it perfectly, even the temperature issue.

Our family member has also had every test, and treatment, and nothing has helped. But I am still looking and trying and hoping to find some relief for her.

Please see my last message in this thread. I was recently diagnosed with D-Lactic acidosis, I had Flu like illness, but I had the same low/normal temperature that you describe with infection or Flu like symptoms. I also had Drunk like and Hangover like symptoms.

Do you feel dizzy or confused at times, or have difficulty thinking when the symptoms are at worst, or even breathing difficulty/hyperventilating or neurological symptoms....?

What other symptoms do you have? any tachyarrhythms at times or with PEM.

Drunk like symptoms can be symptoms of D-Lactic acidosis. I can relate to a lot of the symptoms you have described. D-La can cause a wide range of symptoms and is really a form of poisoning which is why it feels like Flu or infection without any temperature.

Paul.

 

[Avenger]

I forgot to say that I had constantly described the worst illness as infections but every time that I was checked for infection I had no temperature (it was normal).
D-Lactic acidosis is systemic poisoning and affects everything even your heartrate. But it fluctuates depending on how much D-Lactic acid that you produce through digesting Carbohydrates and Simple Sugars which can no longer be Metabolised because you have abnormal Overgrowth of Bacteria.

I identify with many of the descriptions of similar illness in this thread. Dunk like feeling and feeling like death. D-La can be fatal and can cause Seizure Coma and Death but may vary from person to person. I had felt that I was going to die during many of the worst exaccerbations. But you can feel mildly unwell one day and like death the next or symptoms can just temporarily abate or fluctuate during the day and worsen with any activity.

With D-Lactic acidosis every test can be normal (although I did have a number of abnormal tests including low mitochondrial function found by Neurologists on different occasions that they could not explain and so told me must be normal for me! Other general tests would be normal including Oxygen although I could have breathing difficulty that felt like suffocating at times and would Hyperventilate at times).

There are only a few tests for D-La and one is Blood Gasses. I was tested for just about everything even when very unwell and after two years of having 'many tests' my symptoms were diagnosed as psychological (if the Doctor cannot understand what is making you ill, you must be the problem!)

Simon Wessely had made a statement about Hyperventilation in ME/CFS. Wessely 'established the lack of relationship between Hyperventilation and CFS'. Hyperventilation is a natural response to D-Lactic acidosis (The statement can be found in Wikipedia; I hope someone passes this on to him and gives his knighthood to someone who deserves one).

Paul.

 

[perrier]

Hello dear Avenger,

I can't thank you enough for your posts.

Does the breath test Lactose have anything to do with D-La?

My daughter had one done by KDM, and it came out normal.

You say there are only a few tests for D-La. Can you let me know please which ones you had?

I have to ask how available these are. We are in the cold northern wilds of Canada, where not much is available.

 

[Avenger]

Hello dear Avenger,

I can't thank you enough for your posts.

Does the breath test Lactose have anything to do with D-La?

My daughter had one done by KDM, and it came out normal.

You say there are only a few tests for D-La. Can you let me know please which ones you had?

I have to ask how available these are. We are in the cold northern wilds of Canada, where not much is available.

Dear Perrier,
the Breath Test is for Bacterial Overgrowth not for D-La, although D-La is due to Bacterial Overgrowth. But the only tests for D-La would be Fecal analysis of Blood Gasses (Blood Gasses are only ever taken during an exacerbation when a patient with suspected D-La becomes confused or drunk like). Can you tell me what KDM stands for?

Dr. Luke White 'D-Lactic acidosis more prevalent than we think' states that anyone with Bacterial Overgrowth is at risk for D-La. Many ME/CFS have been found to have Bacterial Overgrowth and I included the Australian Researchers Abstract where D-Lactic producing Bacteria had been found in all of their CFS patients (Sheedy)

You need to ask for a D-Lactic or Bacterial Overgrowth Consultant Gastroenterologist. The first Gastroenterologist who I saw did not understand D-La. You will have to enquire before making an appointment that they have experience in D-La. D-La can be dangerous when high levels of Carbohydrates or Sugars are consumed because the Bacteria increase production of D-La which is a poison and makes you feel as though you have Flu or an infection and at worst like you are going to die. The symptoms can be mild to traumatic affecting every organ.

A DIY test for D-La would be to exclude all Carbohydrates and Simple Sugars completely for a few weeks. It can take 64 hours to reduce symptoms. Or ask for Metronidazole antibiotics to trial for 7 days through your Doctor. If you respond to either diet or antibiotics then press for tests for D-La. You must talk to your Doctor first and make sure the diet is appropriate and that your daughter does not have something like Glycogen storage disease where high Carbs are necessary. I had been given antibiotics cyclically every month, but now control the symptoms with diet only.

In the UK Dr. Myhill puts all of her ME/CFS patients on a 'Stone Age Diet' which can be found free online.

I found that I experienced Flu like symptoms, but when the symptoms worsened I would feel dizzy and then could have difficulty thinking and the next stage would be confusion and becoming very unwell. But my symptoms could fluctuate day by day, or even hour by hour and could come and go or be almost constant or remit. Everyone's symptoms may be different and it has caused me a number of different problems.

D-Lactic acidosis is supposed to be a rare disorder and usually due to short bowel syndrome. I am an example of D-La without short bowel syndrome (which means that anybody can develop the same problem). I do not believe that it is rare, I just think that it has not been investigated because it has been taken for granted for so long that it is rare and due to short bowel syndrome. My belief is that it has been occurring since the general use of antibiotics.

I believe that the overuse of antibiotics and unjustified overuse in agriculture can select for Bacterial Overgrowth through resistance and decimation of bacterial colonies although there are a number of other reasons for D-La including Diabetes, and Methane producing Bacteria can be self sustaining Overgrowth through decreasing motility through slowing muscle contractions.

With Bacterial Overgrowth there are two main gasses produced, Hydrogen and Methane in the Breath Test. If your Bacteria produce Methane you may well develop motility problems including constipation. If Hydrogen you may develop loose stools and can suffer malabsorption. You can have both Hydrogen and Methane producing Bacteria and some Bacteria (Methane Producing) will live off the Hydrogen producing Bacteria. My own belief is that there may be a number of combinations of Bacteria in Overgrowth, but they may all be resolved through exclusion diet as in D-La.

I am hoping that this information will help. After losing 18 years to this illness, it will make it all worthwhile if this is of benefit to others. I hope and pray for success with your daughter.

Paul.

 

[Avenger]

Dear Perrier,
I now believe that D-Lactic acidosis is a form of infection but without giving rise to a temperature and this may be why it has been misunderstood for so long in ME/CFS.

Criteria for infection is the invasion of an organism's body tissues by disease causing agents, their multiplication and the reaction of the host tissues to infectious agents and the toxins they produce. In D-La the infection is due to Overgrowth multiplication that remains in the Gut, but the toxins that cannot be metabolised invade the hosts tissues without giving rise to any temperarure because the immune system is not activated as it would normally be in an infection.

So the host feels the symptoms of infection (flu like) without any change in temperature. Doctors who are trained to look for temperature are blind to the underlying cause, because it breaks the rules and appears as though that nothing is happening except psychologically and will then blame the patient.

With D-La the infection is caused by Overgrowth of a particular Species producing the toxin D-Lactic acid (and there may also be other metabolites involved with unknown attributes found by Sheedy).

The reason that this has been misunderstood for so long is that although you get the symptoms of an infection such as Flu like, or Infection like symptoms, D-Lactic acidosis it generates no change in temperature (I have also describes for 18 years as Flu like, Infection and poisoning). Every time that i was unwell Doctors took my temperature. I diagnosed my own problem when I realized that no one would help me or was even interested in what they perceived as a psychological problem.

Doctors do not understand infection unless it comes with temperature. In D-La you have all the symptoms but no temperature. Many of you have reported the same lack of temperature in this thread.

My belief is that Bacterial Overgrowth barely describes the condition and should be viewed as an infection (and there may be more than one form of Overgrowth). Sheedy found two D-Lactic producing Bacteria, but Fungal infections such as Candida also produce D-Lactic acid. It may be the toxins or metabolites produced by Bacterial Overgrowth that causes illness and Flu like symptoms in ME/CFS for at the least a Subset (and possibly more).

Paul.

 

[Nanni]

@ljimbo423 I’m so interested in the comments about treating mitochondria before leaky gut. Sorry I’m very un techi and haven’t mastered inserting quotes. I’m wondering what protocol to try. I’ve done 23 and me which doesn’t look like a terrible mthfr picture but some of it, and I don’t detox well. So I’ll try a new methyl b12 and have a good day and hurt the next. Sometimes from over doing it but not every time. What in your opinion is a good methylation protocol to follow ?

 

[Nanni]

Yes I had 24/7 horrible flu-like symptoms every day...........no breaks.......for 20 yrs. I no longer have those symptoms thanks to anti-viral protocol I've been on for a little over 2 and 1/2 yrs. I still have challenges..(nothing like before)............but no longer feel like death.

Hi Tammy, I just came across this post. I’m wanting to try anti viral protocol and was wondering what worked for you. Are you still doing well? I hope so. Thanks, Dianna

 

[Tammy]

Hi Tammy, I just came across this post. I’m wanting to try anti viral protocol and was wondering what worked for you. Are you still doing well? I hope so. Thanks, Dianna

I'm still better than I was but still on the healing path. The formula I have been following includes natural anti-virals/bacterials, diet, other supplements to support body as a whole. I have been following recommendations of Anthony William. If you have any other questions you can PM me.

 

[BeADocToGoTo1]

It was one of the most frustrating, long lasting and debilitating symptoms. It is a strong warning signal from your body that something is wrong. This is how I would describe it to friends, family and doctors to try to have them understand it:

Imagine you have a flu with high fever, malaise and bodyache that makes you want to curl up in a corner and die, but then 24/7 for years with no end in sight.

I spent a fortune looking for viral and bacterial causes, but it only showed many of the usual past infections (CMV, EBV, Coxsackie, HSV1, Mycoplasma pneumonia, etc.) and was a dead end in my case. Lyme and all its coinfections would definitely be one to check for.

This is just my own experience and opinion... It is not necessarily the virus, bacteria or toxin that makes you feel so bad, but your own body's reaction to the insults and damage, forcing you to stop and rest. The bodily insults these days can come from so many directions as we are constantly bombarded with toxins through air, water, EMF, food, medicines, excess sugar, on top of the viruses, fungi and bacteria that our immune system normally should be able handle. But the chronic assault will set the immune system in a constant state of war.

Just one example of a cause, but an important one is when your microbiome is out of balance, not only are you fighting the excess pathogens and the toxins they release, but you also have less of the beneficial critters that help our immune system, help break down food, help in vitamin production, etc. A vicious cycle that takes a number of actions, determination, patience and time to rebalance.

But also important is that unless insults that you have control over are also stopped or minimized, your body will still feel like it is under attack. And it remembers and can overreact. If I am not careful still, and eat or drink something with chemicals my body 'remembers' as intruders I get a stern warning. If I overdo things and forget to meditate or rest I still get a strong warning signal.

I am of the opinion that every little action can help calm the system. But once hit this bad, you have to be very careful even when you start to have better days.

ljimbo423 comments on microbiome, mitochondrial support and the PEM Buster list from Hip are a big help.

 

[ljimbo423]

@ljimbo423 I’m so interested in the comments about treating mitochondria before leaky gut. Sorry I’m very un techi and haven’t mastered inserting quotes. I’m wondering what protocol to try. I’ve done 23 and me which doesn’t look like a terrible mthfr picture but some of it, and I don’t detox well. So I’ll try a new methyl b12 and have a good day and hurt the next. Sometimes from over doing it but not every time. What in your opinion is a good methylation protocol to follow ?

Treating methylation is very individual. Increasing methylation creates more glutathione and glutathione is a powerful detoxifying substance. I'm guessing that's why you feel worse after taking methyl b12, it's probably from mobilizing toxins in your body.

When I first started methylation I got horrific detox symptoms. I had to start at a low dose of methylfolate, like 50-100 mcgs and increase it 50-100 mcgs every 3-4 days. For some reason methyl b12 doesn't give me any side effects at all.

That's why I say treating methylation is very individual. Having said that, I think methy b12 and methylfolate are the cornerstones of supporting methylation.

As far as supporting mitochondria goes. I have found that branched chain amino acids, coq10 and acetyl carnitine very helpful. I have also learned that high doses work best but it takes time to slowly get to those high doses.

 

[Nanni]

@ljimbo423 Thanks for the feedback. I do see how individual treating methylation is and I share everything you mentioned. I’m getting a lot of help from the methyl b12 and folate. But I get the detox symptoms when I take the multi methyl supplement which has 30 ingredients. So are you doing/taking anything for the detoxing that I assume is taking place but slowly enough that it’s not making you sick? I

 

[ljimbo423]

@ljimbo423 Thanks for the feedback. I do see how individual treating methylation is and I share everything you mentioned. I’m getting a lot of help from the methyl b12 and folate. But I get the detox symptoms when I take the multi methyl supplement which has 30 ingredients. So are you doing/taking anything for the detoxing that I assume is taking place but slowly enough that it’s not making you sick? I

Yes, I take charcoal to help absorb toxins from my gut, which helps VERY noticeably. I take 2.5 grams or about 2 teaspoons, every day on an empty stomach. I buy a powder.

A lot of toxins end up in the gut to be eliminated from the body. The charcoal helps to absorb them, so they don't get reabsorbed into the body and recycled again.

 

[MartinK]

Interesting reading about D-lactic acid...thanks a lot.
I think, there is really close connection between FLU-LIKE - INFLAMMATION - PEM in many of us.
When I have more inflammation feeling, it will increase flu-like symptom and propensity for PEM as well.

I want to try to remove the carbohydrates/sugars for 3-4 weeks in close future.
I've done a lot for the diet, but not this type.

For me works really well HBOT - oxygen reduce all my symptoms every time for me... we cannot talk about remission, but about a little relief. No one could explain to me what it could be related to...or what it might point to.

 

[Nanni]

I have noticed the same thing about the inflammation, pain,PEM grouping. I see so much leading back to stress. I don’t understand the mechanics of oxidative stress but I know the HBOT treatments help. Anything to mop up the junk stress brings.Do you have your own equipment?

I just saw a YouTube interview with college basketball star Donald Watts who got ME/CFS. He’s basically recovered but sticks strictly to what worked for him. Number one was diet and of that he said sugar and gluten were are the most important. I’ve been reading about the pancreas and the effects of carbs. A lot of stress is diet related. It’s all tied together. I’m going to do it but kicking and screaming. I already have a lot of restrictions but anything is worth feeling better.

 

[MartinK]

Dear @Avenger please, is possible to have d-lactic acidosis even if I not respond to rifaximin?
I didn't know any change in these meds.
I'm wondering how accurate it is...;-) thanks a lot!

 

[MartinK]

@Nanni I go for hospital to hard chamber - dive info 15 meters to 2 hours. Im little bit confused about benefits from soft chamber.

 

[maggie3]

The flu feeling is my main symptom (and also PEM feels fluey for me). I have felt like I have a severe flu for 15 years every day, since December 2002. A severe flu (and a hangover) is how I try to explain my ME to other people.
.

Yes I always describe how I feel to people as having a terrible hangover. The flu feeling is also my main symptom. I have never really experience just straight PEM but rather extreme flu crashes. Ugh those crashes are when I feel like I am in a living hell

 

[Tammykinz]

I am 16 months from onset. For me I had that daily in the beginning for months. It was horrid to say the least. I figured I would just stay that way. However after about 10 months it just started getting less and less. Now 16 months in when I get it...its way more mild and infrequent.

The only thing that helped me was rest and I hate that word because that's all I do. I dont work..I'm housebound I rest all the time !!

 

[Avenger]

Dear @Avenger please, is possible to have d-lactic acidosis even if I not respond to rifaximin?
I didn't know any change in these meds.
I'm wondering how accurate it is...;-) thanks a lot!

Naltrexone Prokinetic;

Hi, sorry not to get back sooner, must have gone into my junk mail.

I also did not respond at all to 200mg Rifaximin twice a day which was my prescription.

For SIBO and Presumably D-Lactic acidosis I have read that 1200mg to 1600mg per day is the correct dose (3 x 400 etc.), but check with your Doctor.

I found Metronidazole to be the best antibiotic (it is also an anti-inflammatory and will help with inflammation in the Gut due to bacteria damaging the mucosal lining). I used this for 12 years before resistance.

Long term antibiotics may worsen any overgrowth, and will eventually lead to antibiotic resistance, but if they relieve traumatic and painful symptoms that give your life back then they may be worth considering, especially if your symptoms are serious or neurological.

I am now using Naltrexone as a prokinetic to speed up transit in my small intestine. For those who have slow transit and constipation, this drug may help or even alleviate your symptoms without having to use antibiotics and may help Gastrointestinal inflammation. They may also relieve other symptoms caused by Bacterial Overgrowth including auto-immune problems.

Some of us will have either fast or slow transit depending on the type of Bacterial Overgrowth.

In D-Lactic acidosis it may be that Motility changes are the cause of, or contribute to illness. My illness started with constipation in 1999. I no longer have this motility problem after using low dose Naltrexone (0.5 to 3.5 mg). It has also been used for MS. Studies reveal it may help people with complex autoimmune diseases, chronic pain, inflammation, cancer, infections, and autism.

It will take some time for me to properly evaluate the benefits, but it seems that there are few drug interactions and side effects at low dose, but it is still being investigated. The only side effect was that it kept me awake when taken at night and so I take it early morning. But this side effect may also stop after a few weeks.

Naltrexone is now given for SIBO with constipation as a prokinetic, but need to be discussed with your Doctor.


Paul.

 

[Avenger]

Yes I always describe how I feel to people as having a terrible hangover. The flu feeling is also my main symptom. I have never really experience just straight PEM but rather extreme flu crashes. Ugh those crashes are when I feel like I am in a living hell

Hi Maggie,
it felt like flu or at times a serious infection for me. Bacterial Overgrowth or D-Lactic acidosis feel like Flu. My illness started in 1999. I expect that we all suffer variations of similar problems due to different metabolites produced by combinations of different bacteria. I have just sent a post concerning Naltrexone which may help.

Paul.