Gaps diet put me in direction to recovery

[Hopeful1]

I developed CFS/ ME after 4 weeks of Levaquin treatment in June 2010 at 37 years, with 2 and 6 years old kids. My CFS/ME worsened and by June 2011, I was forced to quit my part time job and became house bound. December 2011, I developed heart muscle pains that worsened to severe ME (CFS/ME) mostly bed bound by April 2012.

During my illness, I tried all supplements as with Only some improvement. May 2012- I came to know about GAPS diet and in 2weeks, I started improving slowly but surely. Fast forward 2 years into the diet (on 3rd stage of introduction diet) , I was able to work again part time!
Now, 5 years into diet, I'm much better , still part time, but much reduced crashes. Now with relapse of symptoms for last few days, but my last major crash was 1year ago! I'm in stage4 at times stage 5 of introduction GAPS diet for last 1 year.
With this relapse, I was reading this forum and I hope sharing of my experience might help some one some where in the world. This diet with vsl#3 probiotic and at times enema is my only treatment for last 1 year- with flares- coq10, b12 and vitamin c.
My thinking is that cfs/ me is originally from gut dysbiosis and best thing to do is to stick to diet for at least 6 months before one give up on it.

 

[gettinbetter]

I developed CFS/ ME after 4 weeks of Levaquin treatment i

Do you have any idea why Levaquin caused it?

 

[Hopeful1]

I believe Levaquin as antibiotic (I had to take another antibiotic augmentin for teeth infection in may 2011which worsened my cfs further)killed my good gut microbes/flora, enabling candida/ other bad microflora to multiply- these can shoot poisons/ toxins, which can enter blood through damaged gut wall. Of course immunity notices this in blood and can start inflammatory reactions which is the reason of most of our symptoms. And these toxins damage muscles, (hence myoclonus and fibromyalgia) and any organ in our body. This is my understanding of our illness. And with my diet changes and probiotics good gut flora improves and so my symptoms.

 

[Thinktank]

Do you have any idea why Levaquin caused it?

Levaquin is a fluoroquinolone class antibiotic, it's known to induce fluoroquinolone toxicity syndrome in many users.
Ciprofloxacin, another fluoqoruinolone antibiotic induced my ME. I'm not alone in that, there are more forumusers which have been seriously damaged by fluoqoruinolones. This has nothing to do with the microbiome.

 

[Murph]

Interesting! I once saw a dietician who proposed the GAPS diet for me. I did some research and decided the evidence base wasn't there. (plus my doc had already taken me off eggs and they seem to be a big part of GAPS.)

Maybe I should look into it again. It looks like a lowrisk, low cost intervention. Plus there is more and more evidence that ME/CFS (and many more autoimmune diseases too ) are related to the Microbiome. For example, Multiple Sclerosis.

http://www.sciencemag.org/news/2017/09/gut-microbes-could-help-trigger-multiple-sclerosis

 

[Hopeful1]

I got generalized tendinopathy with achilles rupture also in 2010 from Levaquin. These from direct side effects of Levaquin, not from gut dysbiosis.
These symptoms improved very slowly in my case. My walking and driving distances improved over last 7 years, suddenly last year after 2 courses of anti parasitic treatment. I believe once gut heals and toxins reduce, tendons and ligaments getting more nutrients to heal.

 

[ahmo]

@Hopeful1 GAPS changed my life. My nervous system was so overwrought by then that life was unbearable. Within 5 days of starting the diet...quitting gluten and dairy...my nervous system calmed by 50%. I went on from the diet to detox and methylation correction. After 5 years, all the noxious symptoms have mostly gone, what I'm left with is the extremely limited energy and related issues of ME.

 

[Hip]

I developed CFS/ ME after 4 weeks of Levaquin treatment in June 2010 at 37 years,

What was the reason you were given the Levaquin treatment?

I got generalized tendinopathy with achilles rupture also in 2010 from Levaquin.

Have you looked at the symptoms of fluoroquinolone toxicity syndrome (FTS)? Have you considered whether you may have FTS rather than ME/CFS (although the symptoms of both diseases are very similar)?

FTS, which is an FDA-recognized condition, is thought may be due to damage to mitochondrial DNA caused by fluoroquinolone antibiotics such as Levaquin (levofloxacin). This study found that fluoroquinolone antibiotics caused an increase in oxidative stress in tendon cells, and caused a "decrease of electrical power" (a loss of mitochondrial membrane potential) in the mitochondria of these cells.

Interestingly, they found that the mitochondrially-targeted antioxidant MitoQ helped protect the mitochondria and tendon cells against these ill effects.


Glad the diet seems to be helping.

 

[Hopeful1]

My symptoms included severe postexertional malaise, sore throats,brain fogs symptoms , gut symptoms worsening over 2 years after Levaquin, Worsening after augmentin antibiotic and many more symptoms of CFS is why I was diagnosed with cfs/ me/FMS and also direct Levaquin side effects.

 

[Hip]

My symptoms included severe postexertional malaise

Was that the classic ME/CFS PEM, which typically is a delayed phenomenon (ie, typically appears one or two days after the bout of exercise or physical exertion)?

There is no known connection between taking antibiotics and the triggering of ME/CFS. ME/CFS usually appears after a viral infection (eg, a gastrointestinal upset or flu-like illness); more rarely it appears after vaccination, and very rarely it appears after major surgery; but there is nothing in the medical literature to suggest that antibiotics are a triggering factor, or even a risk factor.

Though gut dysbiosis is common in ME/CFS, and could well be an exacerbating factor in the disease, so it makes sense that treating it with the GAPS diet could bring positive results.


What was the reason you were given the Levaquin?

 

[Hopeful1]

Was that the classic ME/CFS PEM, which typically is a delayed phenomenon (ie, typically appears one or two days after the bout of exercise or physical exertion)?

Yes

Literature/ medical community doesn't know much about cause/ treatment/diagnosis of cfs/me either. Stil, some questions if mental illness- which we all know is NOT the case.

Pyelonephritis

 

[Hip]

Did you ever perform a stool analysis to see if you have any pathogenic bacteria in your gut?

 

[Hopeful1]

Did you ever perform a stool analysis to see if you have any pathogenic bacteria in your gut?

No. Since current diet treatment is working for me why waste money? And it's not going to change my treatment any further.

 

[Hip]

No. Since current diet treatment is working for me why waste money? And it's not going to change my treatment any further.

I know what you mean about the expense of testing, and I have also skimped on a lot of useful tests; but I ask because when other ME/CFS patients read accounts of treatments leading to improvements in symptoms (like your account above), it often useful to characterize the patient, and what medical circumstances they are in, including what infections they have, as it is possible that the treatment will work best for patients in similar circumstances.

It can also help understand how the treatment may have worked.

Did you ever do any other type of testing, like a leaky gut test, or a test for active infections with the viruses most commonly linked to ME/CFS (coxsackievirus B, echovirus, EBV, HHV-6 and cytomegalovirus)? The GAPS diet is considered to help leaky gut, and one study on 41 ME/CFS patients showed that a leaky gut diet plus leaky gut supplements lead to clinical improvement.



Your improvement appears pretty substantial: you were at one stage at the severe level (bedbound) on the ME/CFS scale of mild, moderate and severe, and now you have improved to such an extent that you only have mild ME/CFS (able to work full or part time). So that's two-level improvement on the scale, which is a very major success. Many ME/CFS patients are not even able to achieve a one-level improvement.

You say that the first signs of improvements appeared after just 2 weeks on the GAPS diet. Were you on stage 1 of the GAPS diet during those first two weeks? And can I ask, how long did you remain at stage 1?

The 6 stages of the GAPS diet are detailed here.

 

[Kenshin]

I got some improvement on a Gaps diet, I now know that carbs/starch make me worse so anything like gaps/ketogenic style diet is good, unfortunateley I also lose weight on them so only good short term.

 

[Hopeful1]

I know what you mean about the expense of testing, and I have also skimped on a lot of useful tests; but I ask because when other ME/CFS patients read accounts of treatments leading to improvements in symptoms (like your account above), it often useful to characterize the patient, and what medical circumstances they are in, including what infections they have, as it is possible that the treatment will work best for patients in similar circumstances.

It can also help understand how the treatment may have worked.

Did you ever do any other type of testing, like a leaky gut test, or a test for active infections with the viruses most commonly linked to ME/CFS (coxsackievirus B, echovirus, EBV, HHV-6 and cytomegalovirus)? The GAPS diet is considered to help leaky gut, and one study on 41 ME/CFS patients showed that a leaky gut diet plus leaky gut supplements lead to clinical improvement.

No

Your improvement appears pretty substantial: you were at one stage at the severe level (bedbound) on the ME/CFS scale of mild, moderate and severe, and now you have improved to such an extent that you only have mild ME/CFS (able to work full or part time). So that's two-level improvement on the scale, which is a very major success. Many ME/CFS patients are not even able to achieve a one-level improvement.
I was never 'very severe ' as never tube fed etc, though severe (bed bound) at the peak. Improved to mild. But now having major crash for last few days- after couple of months of organizing parties/ cooking a lot, kids activities, with more work at home and at work, socializing lot more plus lapsing on diet little bit in last couple of months etc. I learned my lesson again to slow down, when I recover from this crash!

You say that the first signs of improvements appeared after just 2 weeks on the GAPS diet. Were you on stage 1 of the GAPS diet during those first two weeks? And can I ask, how long did you remain at stage 1?

I started with full gaps diet for 1 week and then went down on introduction stage from 6 to 1 over the next week. Was on stage 1 for couple of months and still go down to stage 1/2 during major flare ups. A lot less cheating on diet in 1 st couple of years than now. It's a hard diet to follow!

 

[Hopeful1]

I got some improvement on a Gaps diet, I now know that carbs/starch make me worse so anything like gaps/ketogenic style diet is good, unfortunateley I also lose weight on them so only good short term.

I also lost weight from over 1 st couple of years, then started gaining with more muscle mass.

 

[msf]

I developed CFS/ ME after 4 weeks of Levaquin treatment in June 2010 at 37 years, with 2 and 6 years old kids. My CFS/ME worsened and by June 2011, I was forced to quit my part time job and became house bound. December 2011, I developed heart muscle pains that worsened to severe ME (CFS/ME) mostly bed bound by April 2012.

During my illness, I tried all supplements as with Only some improvement. May 2012- I came to know about GAPS diet and in 2weeks, I started improving slowly but surely. Fast forward 2 years into the diet (on 3rd stage of introduction diet) , I was able to work again part time!
Now, 5 years into diet, I'm much better , still part time, but much reduced crashes. Now with relapse of symptoms for last few days, but my last major crash was 1year ago! I'm in stage4 at times stage 5 of introduction GAPS diet for last 1 year.
With this relapse, I was reading this forum and I hope sharing of my experience might help some one some where in the world. This diet with vsl#3 probiotic and at times enema is my only treatment for last 1 year- with flares- coq10, b12 and vitamin c.
My thinking is that cfs/ me is originally from gut dysbiosis and best thing to do is to stick to diet for at least 6 months before one give up on it.

I have made similar progress with the FODMAP diet (which I think is based on GAPS), along with treating the gut.

 

[ljimbo423]

My thinking is that cfs/ me is originally from gut dysbiosis and best thing to do is to stick to diet for at least 6 months before one give up on it.

Hi @Hopeful1 - I also believe my cfs/me was caused by dozens of courses of antibiotics over many years, causing dysbiosis, leaky gut and my cfs symptoms.

I use to get bronchitis once or twice a year for many years and took antibiotics to get rid of it. I am on a diet similar to the gaps diet and making good progress in my recovery. I also take herbs to kill off the bad bacteria in my gut and probiotics to replace the good bacteria. Thank you for sharing your story.

I need to hear stories like yours to remind me that I am on the right track and to keep going!! Thanks again and continued good luck in your recovery!

Jim

 

[Daffodil]

@ahmo i have been trying to do these diets for ages but i am always so hungry and dont know what to eat. i can never get full. i have succeeded in giving up gluten but cannot seem to give up dairy. i also cheat a lot with stuff i am not supposed to have according to the testing.

what do you eat and how do you resist eating other things? do you live with other people? for me, it is much harder because the stuff is always in the house....and i seem to need to snack all day. its like i get anxious if i am not putting things in my mouth all the time.

so what kinds of things do you snack on?

thanks!