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Severe ME/CFS 2013, Remission 2017, Relapse, Remission Dec 2022

Messages
32
My story from 2013-2017 can be found here. I recovered from severe ME/CFS after 4.5 years of various treatments, under the supervision of a MD/PhD. I returned to grad school in 2017 and relapsed. In Nov 2017, my treatments resumed. However, I was able to remain in school with a reduced schedule & graduate with my PhD in Aug 2022 (University of Southern California). I am finally done with treatment as of mid Dec 2022. I am now exercising on a daily basis, something I haven't been capable of doing in over 5 years. I will eventually write an updated case report, but I thought it would be helpful to share some key items:

1) Intestinal Candida has likely been my #1 problem (though I have no way to prove this). Please note when I was diagnosed with ME/CFS in 2013, I was tested for Candida via Quest Diagnostics. Labs were negative. However, the doctor (MD/PhD) who began treating me soon after suspected Candida & put me on Nystatin. I was eventually put on Fluconazole, so antifungals are NOT a new thing for me. I was on them for months/years during the 2013-2017 period.

2) In March 2020, my overseeing physician advised various herbs to help my immune system due to COVID. One was Epicor. I had a violet reaction to this, which included uncontrollable pain, itching, hypotension, and debilitating fatigue. I introduced Nystatin on my own, and this brought the itching down. When I saw my doctor again, he said I was likely still dealing with Candida (despite negative labs). He said it could take 12-18 months to treat. Well, it has taken 2 years & 9 months. My biggest challenges during this time has been uncontrollable itching & severe hypotension on a daily basis, with frequent outbursts of uncontrollable pain that have almost landed me in the ER. The fatigue has obviously been very debilitating. With COVID (and everything moving remote), I was able to stay in school. Otherwise, it would have been impossible as I had to remain supine most of the day. With my PhD advisor, we had to meet via phone; zoom was too painful.

3) All my treatments have not brought instant gratification. I have had to "die" and question my sanity more times than I care to confess. There has clearly been a “switch” but it has not happened without EXTREME suffering. Anyone wanting to know what has made the biggest difference in resolving my chronic pain, hypotension, dysautonomia, fatigue, etc. will not get a simple answer. For me, it has been treating the underlying causes. And with successful treatments, all my symptoms have disappeared (but this has taken years). Herbs have been crucial, but pharmaceuticals have also been necessary. The best sources for herbal advice worldwide (in my opinion) are Stephen Buhner's books. My doctor has also been a crucial source of information, but obviously is not an option for most.

4) From March 2020 to May 2021, my treatments for Candida included rotation of pharmaceuticals (Nystatin & Amphotericin B). The latter is expensive (requires a compound pharmacy) so I used sparingly. In addition, Berberine has been my #1 herb for Candida, though my doctor has advised numerous items to heal my GI tract / combat Candida (which I have taken, but not all regularly): VSL3 (prescription strength), Black Walnut, Ca/Mg Butyrate, Arjun/Guava, Artemisinin, Aged Garlic, Cat's Claw, Germanium, Otoba, and more. My doctor also advised various items to help Candida biofilms (such as NAC & EDTA).

5) In May 2021, my doctor added Fluconazole. After a few days, I rotated back to Nystatin. I had the most dangerous herx reaction of my life (systolic BP dropped to low 50s). I have required Fluconazole from May 2021 through mid Dec 2022, though it has been rotated.

6) Contrary to popular belief with regards to treating Candida, I did not make any changes to my diet. I ate a fairly balanced diet, devoid of processed foods (which is what I have been doing for decades). My doctor did not advise drastic diet changes. I have not been able to tolerate dairy & gluten products for years. When I developed ME/CFS in 2013, I was not eating gluten/dairy. In Spring 2022, I was able to reintroduce gluten; I have been eating gluten daily ever since. It is clear that healing my GI tract has reversed my gluten intolerance. The same cannot be said for dairy, however, which I think I was likely born with.

7) In Feb 2022 (~ 2 yrs after intense Candida treatments), a stool test with Parasitology indicated I was positive for Candida. This was the first time anything for Candida had been positive. Please note this was my first test with Parasitology. My doctor had previously used Labcorp, Quest diagnostics, and Diagnostic Solutions (all endless times). Nothing in my Candida treatment changed, despite the positive test. However, the Parasitology test also indicated I had a parasite (Cryptosporidium parvum), so my doctor advised the herb Vidanga. I took this for ~ 6 weeks. Please note my doctor had tested for parasites before with Diagnostic Solutions, but nothing ever showed.

8) In Sept 2022, a repeat stool test with Parasitology indicated I was still positive for Candida. Nothing in my Candida treatment changed. However, the Parasitology test also indicated I had a roundworm (Larval Nematode), so my doctor advised PinRid (from amazon). He said 1 dose should be enough, but I ended up needing 3 (separated ~1 week). Cryptosporidium parvum at this point was negative.

9) Since March 2020, I have seen both a urologist and gynecologist for severe bladder challenges (including itching & burning). Both these doctors were useless. My bladder problems have 100% resolved with Candida treatments (though this has taken years), though both doctors said I had no evidence of this (or anything else). The herb Lomatium has been crucial for my bladder challenges, which Stephen Buhner happens to recommend for Candida in one of his books. Without Stephen Buhner's books, I would not be where I am. Please note my doctor advised vaginal suppositories (such as Boric Acid), but these have done nothing for me (though 1000s of people on Amazon swear by them).

10) What made me finally enter remission? I believe it was the complete restoration of my GI system, which required more than simply antifungals. This has been a 2 year 9 month process (and I never took a break), which is the longest I have been on any single treatment plan. I 100% agree with @kurt that for some, ME/CFS is a complex fungal intolerance.
 
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36
Living with this illness is not easy, nor are the things we subject ourselves to in an attempt to get better, so it's wonderful to hear that you have reached remission! I hope this lasts for many years to come.

I'm just curious to know what level you were at during the period in 2017 which is described as "mild/asymptomatic." Were you completely free of all ME symptoms (complete remission) or just at a much higher level of functioning while still experiencing some limitations? I'm currently in complete remission and curious of what has pushed people back into relapses, and at what level of function they were at.
 
Messages
32
I'm just curious to know what level you were at during the period in 2017 which is described as "mild/asymptomatic." Were you completely free of all ME symptoms (complete remission) or just at a much higher level of functioning while still experiencing some limitations? I'm currently in complete remission and curious of what has pushed people back into relapses, and at what level of function they were at.

By Spring 2017, I was free of all ME symptoms (complete remission). I was exercising, but I never reached a high intensity. However, I rushed back to grad school in Aug 2017, after a 4.5 year medical leave (as I was never supposed to be away this long). Once I moved back to Los Angles & started school full-time, I began declining. In other words, once I started trying to live a 100% normal life, things went downhill. This is the bottom line. I had to stop exercising & driving a car shortly after I moved to Los Angeles to preserve energy for school. It was clear by Nov 2017, I was relapsing. My doctor suggested IV infusions with Alpha Lipoic Acid to help clear residual toxins. He thought this would help. Instead, I developed a 105 degree fever within 24 hrs, despite starting at an abnormally low dose (50 mg). After several months of infusions, I was diagnosed with Lyme disease & Bartonella. So I did several months of treatment for this, and struggled immensely. Eventually I was also diagnosed with dysautonomia, so being in Los Angeles was problematic for my health. Looking back, it's obvious I had not cleared all the underlying infections.
 

splusholia

Senior Member
Messages
240
‘10) What made me finally enter remission? I believe it was the complete restoration of my GI system, which required more than simply antifungals.’

What other things did it require; or do you mean all of the above that you’ve written about? Thank you.
 

Husband of

Senior Member
Messages
318
Hi Rachael, thanks for coming here to help out others.

i had a two questions

1. why did your doc suspect candida in 2013?

2. What was your MECFS onset like? Was there a clear trigger or tipping point? Was it a sudden onset?
 

Shanti1

Administrator
Messages
3,269
Hi Rachel,
Thank you for sharing your story. I hope you don't mind if I ask a couple of questions as well.

When your ammonia was high was your BUN also elevated? I am asking because I have a history of candida krusei and my BUN has always been mid-normal, but I have never checked ammonia. It would seem that, in someone with a normally functioning liver, a high ammonia would lead to high BUN, but perhaps this isn't always the case?​
Did you ever try sodium benzoate or phenylbutyrate to lower ammonia for symptomatic relief and, if so, did it help?​

Thank you and congratulations on your remission!
 
Messages
32
‘10) What made me finally enter remission? I believe it was the complete restoration of my GI system, which required more than simply antifungals.’

What other things did it require; or do you mean all of the above that you’ve written about? Thank you.

Yes, I highlighted what I felt were the KEY points, but my list was not exhaustive. I had a complex protocol that was constantly evolving in an effort to fully restore my health. Managing medications was a complex process & I relied on muscle testing for selection/dosage, which I eventually learned to do myself. My doctor has been 100% supportive of this and has repeatedly told me "you can muscle test x, y, and z and determine which is best. You can determine the dosage, but I wouldn't go higher than xxx." Without muscle testing medications, I would never have made it through treatment. I have a library of 150+ medications (predominantly herbs) I have accumulated over 10 years, so determining what (and how much) to take is not simple. You can find endless sources online for learning how to muscle test supplements. However, it's taken me YEARS to master. Stephen Buhner in his "Healing Lyme" book advises against muscle testing since he has seen more harm done by it than good. However, he also notes that there are rare people who have the ability to obtain valid results. I was fortunate to find someone with this rare skill who was able to teach me (and I have evolved it). I would use high caution for anyone wishing to explore muscle testing, as it's not easy to learn. But I do credit my mastering of muscle testing myself as an essential element in my recovery. Most people who muscle test sell supplements, which is problematic on multiple levels. The person who taught me was not in the business of selling supplements. Please note the medical literature is not supportive of muscle testing (but I have not read a single source that explains how to do it properly based on my personal experience). I have maintained the view of Albert Einstein when it comes to my medical treatment: "Only those who attempt the absurd can achieve the impossible."
 
Messages
32
Hi Rachael, thanks for coming here to help out others.

i had a two questions

1. why did your doc suspect candida in 2013?

2. What was your MECFS onset like? Was there a clear trigger or tipping point? Was it a sudden onset?

You can find the details for both of these in my case report, which is freely available. Candida was suspected based on elevated ammonia (47 umol/L, normal: 11–35) & my history of long-term antibiotics. My onset was gradual & is explained in my case report over several paragraphs. Here is one of the key paragraphs:

"The patient reported being bitten by several ticks in Central America 8 years ago. When she returned home, she began experiencing flu-like symptoms. However, she has never tested positive for Lyme disease nor displayed a bullseye rash. The patient also described that she has had declining health over the past 6 years, but she was semi-stable until recently. During the fall of 2012, the patient was continuously fighting ongoing infections and had several bouts of the flu. She was working on a limited basis while going to school, but she had to quit work completely. She no longer had the capacity to exercise, and minimal time away from home would force her to bed for several hours."
 
Messages
32
When your ammonia was high was your BUN also elevated? I am asking because I have a history of candida krusei and my BUN has always been mid-normal, but I have never checked ammonia. It would seem that, in someone with a normally functioning liver, a high ammonia would lead to high BUN, but perhaps this isn't always the case?Did you ever try sodium benzoate or phenylbutyrate to lower ammonia for symptomatic relief and, if so, did it help?

No, my BUN was not elevated. I cannot recall a single instance over the past 10 years when my BUN has been abnormal (or a concern of my doctor's). I have had elevated liver enzymes rarely, but my doctor has never been concerned as it's always come down with repeat testing. My elevated ammonia levels were treated with more detox support supplements (e.g., Succinic Acid, Bromelin, Milk Thistle, etc.). But when this was inadequate, I was switched to Fluconazole. This was before 2017. My doctor has not checked my ammonia levels in recent years. I have never taken sodium benzoate or phenylbutyrate.
 

Mary

Moderator Resource
Messages
17,466
Location
Southern California
@Rachel Straub - I second you re muscle testing. I'm quite a bit better than I was 12 years ago, and definitely way better than when I first fell ill in 1998, And I credit this all to muscle testing. I also completely agree that it's not that easy to master. I think it appears deceptively simple and is very easy to get it wrong. I always recommend that people have it done first by someone who is very good at it, to start to get an idea of what's involved.

Muscle testing helped get my liver and gallbladder working properly, it helped my detox pathways start working properly - prior to them I would detox at the job of a hat, several times a month. MT helped with a couple of refeeding syndrome problems involving potassium and phosphorus and methylfolate and thiamine, which made a huge difference for me - The list goes on. Unfortunately, it has not solved the central problem of ME/CFS for me, But without it I know I would feel quite helpless. It gives me a little bit of power and control over my life, which is invaluable.
 
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32
It's been approximately 5 months since my remission post. So a brief update:

1) I have had 3 gum surgeries since the end of December. Only the first was tortuous. I mentioned my first surgery here. The other 2 surgeries were mild in comparison. Long story short, I ended up relapsing from the surgeries and had a return of ME/CFS. It wasn't immediate, but rather gradual. My overseeing physician (MD, PhD) has since told me being on the steroid Dexamethasone was a HORRIBLE choice by my periodontist. Essentially, the surgery resurfaced severe itching (everywhere), and I had to reinstate fluconazole for ~ 8 weeks to get things under control. Being on the fluconazole caused me to herx / crash. My systolic BP was in the low 70s very frequently, so I had to remain supine for most of the day. I have learned that staying quiet (and not trying to take things to raise my BP) is the best course of action.

2) I repeated parasite stool testing in April and the results indicated I still had a roundworm (Larval Nematode). I was dealing with severe vaginal itching around the time of the testing, which I have a long history of fighting. But the fluconazole was no longer helping. I had to reinstate PinRid (Pyrantel Pamoate). I required 4 dosages, separated by a week. My doctor told me to NOT take PinRid more than once a week as it's too toxic. Pyrantel Pamoate is the same medicine used for Pinworms, which are a simple fix. But for more severe roundworms, my doctor has since told me it could take weeks/months of treatment. He also advised me to incorporate various herbs to target roundworms. Ashoka has worked best for me. Similar to fluconazole, the combination of PinRid and Ashoka caused me to herx/crash, with hypotension being the most debilitating. Ashoka is not a new herb for me, as my doctor previously suggested it for Candida.

3) At this point, I am back to where I was pre-surgery and no longer meet the criteria for ME/CFS. It's clear that if I hadn't resumed both candida and parasite treatments, I would be in HUGE trouble.

4) My experience again highlights that in my situation, ME/CFS has been 100% caused by immune dysfunction and infection.