Healing crisis vs worsening of condition - how to tell the two apart?

[velcrowings]

I've been treating myself for Lyme, coinfections, and HHV6 for about 9 months now in total. Since I started treatment, the level of fatigue and sleeplessness I experience on a daily basis has significantly increased. Before, I would have a couple days or so a week of feeling somewhat okay and not having to take a nap, and would be able to sleep 8 or 9 hours a night. These days I absolutely need to take a nap every day and can generally not sleep more than 5 or 6 hours at a time.

I know that a healing crisis commonly makes one feel worse before they begin to get better. However, how do I know that I am not possibly hurting my body by taking the wrong treatment(s) or taking them too intensively, not detoxing enough, etc? I am taking some supportive herbs/adaptogens in combination with the more caustic stuff (herbs and supplements, no pharmaceuticals) but I can't tell if I'm striking the right balance.

How long can it take to start to feel better after a treatment has commenced? I know this is very individual and depends a lot on the cause(s) of one's CFS, but I am curious as to what the far end of this range is...

 

[wabi-sabi]

I know that this is not a popular idea, but I don't believe that "healing crises" exist. If you are feeling worse on a particular treatment-trust those feelings-the treatment is making you worse.

 

[Mohawk1995]

I would have to agree with @wabi-sabi During the many years and different treatments ((15-20) he received none of the ones that made him worse eventually helped him improve. There were times that we actually took a 1-2 month "vacation" from treatment or seeing doctors. For the first 4 years, he was treated with the diagnosis of Atypical Migraines before we found he had ME/CFS. I am thankful that the Migraine docs always played it cautious but definitely believed he had real physiologic issues going on and encouraged him to stay active within reason. When he did eventually receive treatment that helped him permanently (at least 7 years now), it was an immediate improvement then 3 years of recovery.

I would say even more so because it is impacting your sleep which we know is a significant issue with ME/CFS.

A rule of thumb with ME/CFS "Don't poke the bear". You will only piss him off!

 

[JES]

I would concur, I'm skeptical healing crises exist, especially if they go on about for months. Regarding sleep, for me lesser sleep is a sign that things are going in a worse direction, whereas more sleep, even sometimes too much, is a step back to a slightly better state.

 

[Rufous McKinney]

Regarding sleep, for me lesser sleep is a sign that things are going in a worse direction, whereas more sleep, even sometimes too much, is a step back to a slightly better state.

Lately I've noticed that on days I am going into PEM, I tend to go back to sleep and get up really late in the morning. I've noticed this since my guests left and I can get up whenever I like mostly. (thats so nice!). My sleep does get disrupted when I have intestinal issues- and those are usually worse when crashing, or induce crashes.

how do I know that I am not possibly hurting my body by taking the wrong treatment(s) or taking them too intensively, not detoxing enough, etc? I am taking some supportive herbs/adaptogens in combination with the more caustic stuff (herbs and supplements, no pharmaceuticals) but I can't tell if I'm striking the right balance.

Anything I take or do which causes me to feel like a detox effect has set in, tends to discourage me as then I get PEM pretty bad and feel: sick again. So there must be some other side- I seem to not ever really get there. Like I'm sure I should just keep trying to - cleanse the lymph, get the acupuncture treatments, work on my neck blockage...take a proteolytic enzyme. Get a massage. All that will make me sick.

I don't really know how to figure out this right balance issue. They seem to suggest that kidneys' and liver's be attended to when taking herbs, pharmaceuticals, etc., but what in fact does that really mean? I don't see anybody monitoring mine, really?

For me- lately I've been on giant break called- taking hardly anything. A personal boycott of sorts.

 

[sometexan84]

Guess I'm the odd man out here, as I totally DO get where you're coming from.

I think this is a great topic, I'd like to learn more about this as well. Unfortunately, I don't think the majority of people in this forum see things this way.

I think it's a valid question, especially considering you're working with Lyme. It's all so complex, so many moving parts. I often pose these questions to myself.

However, how do I know that I am not possibly hurting my body by taking the wrong treatment(s) or taking them too intensively, not detoxing enough, etc?

I mean, you could be...

There are treatments that could mess you up. You could be taking the wrong dose. There's always the possibility of treatment interactions. And there are definitely treatments that could flat out exacerbate everything. Plus the detox thing is a concern in my opinion.

For instance, I was using N-acetyl-cysteine (NAC) to treat Coxsackie B3, and because it's a common ME/CFS supplement to take. But then I found out it increases Chlamydia Pneumoniae replication, which I also have. So I stopped taking that.

I don't have answers, but here are some tips:

• Research (drug & infection) interactions - I look for any possible drug interactions for every drug and supplement I'm taking. And I do Google searches for all combos of [supplement] [infection], like "ldn coxsackie", "ldn enterovirus", "ldn ebv", etc etc.
• Dosage check - I check multiple resources to verify dosage. And see how long I can "safely" take it.
• Re-check labs - I regularly re-check to make sure titers are decreasing. I didn't see any effect after being on Ginkgo Biloba extract for a time.... so I stopped taking it. You can re-check labs for intestinal permeability, basics like blood counts, liver function, and whatever else.
• Detox support - If needed. I'm currently on Milk thistle and Dandelion root for detox support. Milk thistle helps to regenerate the liver, it is a super antioxidant, removing pollutants, going after pathogens, and preventing free radical damage in the body. Dandelion supports healthy liver function and natural detoxification in the body. Increases bile production. helps the liver flush out toxins. Bookmark this two part blog on ME/CFS detox and help on the detox.
• Document known herx reactions - I find it helpful to research herx reactions, and make note of when to expect herxes. For instance, I knew going in to expect herx from Valtrex 4-6 weeks in.
• Listen to your body - I can usually tell I'm herxing, when I suddenly have a very slight sore throat, a very slight headache, possibly a little nausea, and have to sleep for 14+ hours (amongst other signs that now make sense to me).
• Go slow - This tip is odd in the sense that I know to do it, yet I do not do it. But they say to not start multiple new supplements at the same time. And to start w/ low dosage, and to back down on dosage if needed.

I strongly believe that...

#1 MANY quit treatments too quickly, and...
#2 #1 has been a major issue for those hoping to recover

It makes sense. We don't freakin know what to expect. We are on our own for treatment. In the future (like 5 yrs and 50,000 studies from now), I'm sure doctors will be able to give precise treatment protocols that minimize this stuff, and that they'll know and tell you exactly what to expect so you can confidently go through the treatment process.

But for now, CFS patients will remain largely skeptical and apprehensive regarding treatments. And maybe that's for the better.

This is an uphill battle. For ME/CFS, our bodies have already "stabilized" or accepted this altered state of functioning. You can feel pretty okay by doing nothing. You'll still have the PEM, and whatever your normal symptoms are. But by treating aggressively, you're definitely going against the grain. Of course it's going to be difficult... you're fighting a multi-faceted SET of adversaries simultaneously, in a body that is ill-prepared to do battle.

How long can it take to start to feel better after a treatment has commenced?

If it's something like taking Valtrex for EBV... then I just look at all the research and past studies to get an idea. And I focus on lab results, and try not to pay much attention to how I feel. I'm pretty committed to looking at my numbers to gauge success, and confident that when my infections are back to "normal" range, my symptoms will improve accordingly.

If it's something else, like vitamin supplements, or CoQ10 or something, I don't really expect to feel much better from that sort of treatment. I take supplements to support the long-term recovery. And I just try my best to trust the supplements I'm on, knowing that I've done my due diligence.

And that's why I have a problem w/ the List of ME/CFS Recovery and Improvement Stories thread. I just do not believe there are many ME/CFS cases where a single drug or supplement would result in a significant, lasting improvement.

Hypothetically speaking, if you were to take the perfect treatment plan for yourself, I'd imagine you'd be healed up in under a year. Of course, this assumes one has actual ME/CFS. If it ends up being just Lyme, or something else, then I'm guessing recovery wouldn't take as long. Again, theoretically.

 

[velcrowings]

It makes sense. We don't freakin know what to expect. We are on our own for treatment. In the future (like 5 yrs and 50,000 studies from now), I'm sure doctors will be able to give precise treatment protocols that minimize this stuff, and that they'll know and tell you exactly what to expect so you can confidently go through the treatment process.

Hypothetically speaking, if you were to take the perfect treatment plan for yourself, I'd imagine you'd be healed up in under a year. Of course, this assumes one has actual ME/CFS. If it ends up being just Lyme, or something else, then I'm guessing recovery wouldn't take as long. Again, theoretically.

Thank you for your insightful reply, this is very helpful. The blog you linked looks pretty solid - I'm going to look into glutathione supplementation.

I share your sentiment - I feel like a guinea pig or test subject sometimes with the way I experiment on myself. It seems like this is some kind of absurd test of my resourcefulness, willpower, strength or creativity. If I heal, it will have been an "initiation" in the less romantic and spiritual sense of the term.

What exactly is "actual ME/CFS"? I thought that this was just a label placed on any condition that produces a certain set of symptoms, and not a discrete and specific entity.

I was using N-acetyl-cysteine (NAC) to treat Coxsackie B3, and because it's a common ME/CFS supplement to take. But then I found out it increases Chlamydia Pneumoniae replication, which I also have. So I stopped taking that.

My LLMD recommended I take NAC despite the fact that I had a positive IgG for Chlamydia Pneumoniae. Seems even the so-called experts today aren't so knowledgeable

 

[sometexan84]

I share your sentiment - I feel like a guinea pig or test subject sometimes with the way I experiment on myself. It seems like this is some kind of absurd test of my resourcefulness, willpower, strength or creativity. If I heal, it will have been an "initiation" in the less romantic and spiritual sense of the term.

Well said.

What exactly is "actual ME/CFS"? I thought that this was just a label placed on any condition that produces a certain set of symptoms, and not a discrete and specific entity.

Well, I think the ruling is still out on this. In my own mind, I don't consider it ME/CFS if it's fatigue from Lyme, or from something psychological, or from hepatitis, or severe sleep apnea, etc. Like, if someone's fatigue problems stem from this type of thing, where treating that alleviates symptoms, I don't consider it CFS. But that's just me.

That said, you can definitely have ME/CFS in addition to any of the above.

They've been tinkering w/ the terminology and criteria for many years now.

My LLMD recommended I take NAC despite the fact that I had a positive IgG for Chlamydia Pneumoniae. Seems even the so-called experts today aren't so knowledgeable

I don't know for sure about NAC and Cpn. It might be ok, that was just one article. But it scared me away from it.

 

[sometexan84]

Oh, another detox marker for me... whenever my pee is dark and list sort of cloudy... despite lots of water throughout the day.

 

[Mary]

@velcrowings - I'm hesitant to post here because I don't have clinical studies to back me up, so am open to a lot of criticism. Having said that, what has helped me a great deal in trying to determine if something is helping me or not - whether I'm having a detox or herx reaction, or whether something is just plain bad for me, is muscle testing performed by an experienced competent practitioner (e.g., I don't think watching a few youtube videos would be enough to learn how to do muscle testing)

I've been helped many times by muscle testing. A long time ago I used to go to my MD when something went wrong, when I felt like crap, until it became apparent they could do nothing for me. Many times however my chiro who did muscle testing WAS able to help me.

e.g. in 2014 I I tried gelatin at night for sleep due to its high glycine content. It hit me like a truck, yeah I slept but also felt like I'd been hit by a steamroller, got lost going to my sister's house, etc. My initial reaction was this stuff is bad for me, but muscle testing indicated that in very small doses, glycine was good for me. So I started taking plain glycine, but in very small doses and over a period of 6 months was able to gradually increase my dose and finally no longer reacted to it with a detox or any negative reaction. And coincidentally at the same time I had started inositol and glutamine and had a similar reaction but much milder, so I did the same with them. And at the end of 6 months, no more detox or negative reaction from these supplements. But the best part was that prior to then, I'd been detoxing several times a month, reacting to various things - eg., apple cider vinegar, cayenne, anything that had 'cleansing" properties would cause a detox reaction. The detox reaction made me feel sick and tired and usually screwed up my digestion. And that no longer happens to me - I think the glycine, inositol and glutamine got my detox pathways working properly.

I've had other similar experiences - MT. helped me do a liver detox. Prior to the detox my digestion was very bad, I couldn't even eat until after noon - turns out I had a lot of toxins from a job I'd had at age 19. I know that no MD could or would have helped me with this. The detox was unpleasant, I stuck it out for a month, but afterwards my digestion was much improved e.g., I could drink a few glasses of wine again without feeling like I'd been poisoned. And I was able to eat breakfast again, etc. I also learned I needed to start taking betaine HCL with meals which helped a lot too.

It's helped me numerous times. Of course I also have to do my own research. I don't follow muscle testing or any doctor's testing or recommendations blindly - Someone asked me once if I would rely on MT for an AIDS test - no, I wouldn't. It's not perfect and sometimes standard testing works just fine. But very often it doesn't.

So if something makes me feel worse, it can be difficult to tell why - educating oneself is important. e.g., when I first took thiamine - B1, it gave me a really nice boost in energy, followed quickly the next day by severe fatigue - WTH?? it took me a long time to figure it out, but I finally did - the severe fatigue was caused by my phosphorous levels tanking, due to a refeeding syndrome reaction from thiamine (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/ )

I had a similar reaction with methylfolate, only that time it was hypokalemia. So reading and muscle testing helped me sort both of these things out and I was able to keep taking the thiamine and methylfolate, both of which have helped my energy levels. And I don't think I could have sorted this out without muscle testing, which indicated they were both good for me, despite the severe fatigue. And my reading helped me sort out what was going on and why, and how I could remedy it.

 

[sometexan84]

I wish there was a detox pathways panel of some kind. To check function here.

@Mary Can you elaborate on "muscle testing" please? Maybe I'm missing something obvious. But I have no clue.

 

[Judee]

I do think it's important to only add one thing at a time and then only when you are sure you do not react to that before adding the next thing. Sometimes I think we get a very long laundry list of things were taking all at once it kinda muddies the water on what is working for us and what may actually be working against us.

Also don't assume because others say something is helpful that it will be for you as well. Because of sulfur/thiol sensitivities, I can't do that much glutathione. That or any high sulfur supplement is a guaranteed migraine for me.

I do think there are times when we do have "healing crises." For instance it used to be that when I got a flu, my temps would slowly build through the duration until I got a high temp one night and it finally broke sometime during the night and I woke up thinking, "Ahhh, I feel a little better."

1) So I would look for things in your protocol that may be undoing some of your positives and causing you to feel worse and rotate them out for a day or two and see if that improves anything. You may find some things need to be dropped from your protocol that way too. Don't throw them out because at some point they may help but maybe just not now.

2) Also I would see if there are things that mirror times in the past when you have recovered from something. When I started antibiotics for possible Lyme, I started getting fevers again. That was a big hurray for me even though they are unpleasant. I took it as a sign that something was working as it should.

Or I may even get some of the symptoms back that I had with the original illness like severe leg cramps (like when I was bit by something) or liver and spleen pain (like when I had mono). I feel that means a particular treatment is targeting the original something in my system.

3) And then, I would also do a mental catalog and see if there have been any improvements of any of your symptoms. They may be slight but if you look you will find them if the protocol is doing some good.

All that being said, if you are absolutely miserable where you are then you may want to back out of the protocol almost completely and start again as I said with one thing at a time.

 

[Mary]

I wish there was a detox pathways panel of some kind. To check function here.

@Mary Can you elaborate on "muscle testing" please? Maybe I'm missing something obvious. But I have no clue.

Hi @sometexan84 - sorry for the delay in responding - I had a busy week-end and lost track of this!

You might look into the Quicksilver Scientific Mercury Tri Test - see https://www.quicksilverscientific.com/mercury-tri-test/
I had this test done at the end of the 6 month period I wrote about above during which I took glycine (starting with very small amounts) and inositol and glutamine, and my results showed very low levels of mercury and also a good ability to excrete mercury. The tri test measures blood, urine and hair for two types of mercury: methylmercury and inorganic mercury, and also measures the body's ability to excrete mercury.

Prior to that 6 months, I was detoxing right and left, 2 or 3 or more times a month. It was endless, literally. and I had tried Andy Cutler's protocol with no results and a few other things. I know this tri test is specific for mercury but I do wonder if it also measures the body's ability to detox in general, because my near constant detoxing just stopped and this cessation seemed to be reflected on the testing.

I don't know if most of my detoxing was due to mercury or not.

As to checking detox function in general, I don't know of a test. However, I used to react to so many things prior to taking the glycine, inositol and glutamine for 6 months, and I no longer have that reaction, I am guessing that the mercury tri test which measures the body's ability to excrete mercury might be applicable to other toxins as well. It's just a guess though. I hope that makes sense! I had to type this twice and my brain's a little tired!

About muscle testing - it's sometimes called applied kinesiology, Many chiropractors do it and lots of other practitioners. Some chiropractors use it to find structural imbalances, to see what needs adjusting. However, it can also be used to measure nutritional deficiencies and in my experience, general functioning of various organs. e.g., it showed when my liver was toxic or my adrenals needed support. The proof for me was that various things improved when I followed my chiro's advice - e.g., on one of my first visits the chiro told me my adrenals were quite weak. I had been very weak, the doctors answer was to give me Prozac (!) which I only took for 2 days, I hated it. Anyways, the chiropractor gave me an adrenal glandular supplement and within 3 days or so my energy started coming back. It still amazes me, though I take it for granted now.

There are lots of different methods. This website can give you an idea of what's involved: https://www.crawellness.com/about/

Quackwatch calls it nonsense and I don't care what they say - I think it's nonsense to give someone Prozac when they are weak as a kitten!

You can find lots of youtube videos about MT, but I don't recommend that someone try it on their own first. To do it right does require some knowledge and if someone doesn't do it right, they won't get accurate results and then will write it off as, being nonsense!

 

[Judee]

I had this test done at the end of the 6 month period I wrote about above during which I took glycine (starting with very small amounts) and inositol and glutamine, and my results showed very low levels of mercury and also a good ability to excrete mercury.

Just wondering, @Mary, do you attribute your use of these nutrients to the "very low levels of mercury" test results? Also do you think you've ever had issues with Candida and if so, did these seem to help with that?

 

[Mary]

Just wondering, @Mary, do you attribute your use of these nutrients to the "very low levels of mercury" test results? Also do you think you've ever had issues with Candida and if so, did these seem to help with that?

Hi @Judee - I do attribute my low levels of mercury to the glycine, inositol and glutamine, though I think the glycine was the most important, as it caused the strongest detox reaction for me. I was tired when I wrote the above so probably didn't make it clear. Prior to taking the glycine, etc., I detoxed left and right, probably was detoxing more than I wasn't, and I'm sure some of it was due to mercury because of my symptoms - I would get very spacey, have trouble concentrating, felt like I was high or had taken a drug even, plus extra tired etc. And that all stopped after taking the glycine etc. for 6 months. And I'd had detox issues for several years. I did have 8 or 9 mercury fillings as a child (lived in Washington, land of soft water!) which were removed in about 1997, but it didn't seem to make much difference at the time.

I'm guessing that whatever pathways are responsible for excreting mercury would also help with other toxins, so that's why I think the Mercury Tri Test might be a good way to determine one's ability to excrete toxins in general.

I have had issues with candida but that was many years ago. Virgin coconut oil was very effective in dealing with it. If you google coconut oil and candida - you'll find a lot of information. Actually I had to go very slowly with the coconut oil because it caused a very strong herx reaction, so had to work gradually up to about 2 tablespoons a day, took it for 11 days as I recall, it was kind of rough, but that took care of the candida. You can also apply it topically if you get candida on your skin.