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Rachel's log

#11 · March 6, 2020, 4:54 am

Hi Rachel

I’m glad you are moving on in your recovery. It’s a very individual thing I think & finding everything that is going on is a big challenge. I’m just focused on one (CFS for 10 years) & now two (CFS for 3 years) people in my family & what their situations are & trying to help them. It’s very difficult though. Until both have full sustained recoveries I won’t know what has worked for them & what works for them may not be the path for others.

Thank you so much for the information about the eye movement therapy. I’ve heard of it but not really researched it. I think it’s finding something that works for you & your situation. I shall be googling 😀 I’ve also looked at the tapping solution but not in detail. I don’t have CFS but have intermittent anxiety issues that have got worse after 2 years caring for my Mum with a rare illness. I fit into the category of limbic system dysfunction too I think and am trying DNRS at the moment. Work in progress 😀

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#12 · May 25, 2020, 4:34 am

Quote from Rachel on May 25, 2020, 4:34 am
Sun exposure and Heart Rate Variability

This isn't really an update but a sharing of my experience with sun exposure. There have been a few posts about this recently since we are now seeing some sunshine. I have also been wanting to share what happens with my heart rate variability when in the sun as it is pretty dramatic and shows that more is going on than simply a skin sensitivity. I would love to hear if anyone has any thoughts about this aspect in particular. I've given quite a bit of background first. The heart rate bit is at the end.

I am one of those that is often described as "intolerant" of the sun. When I was a child I was told I was "allergic" to the sun. The term polymorphic light eruption is used to describe the type of reaction I have.

As a child I was prescribed high factor sun cream and was often seen in long sleeved blouses and wide brimmed sun hats. I did also play in paddling pools in swim wear but long periods in the sun were out. We did not go on beach holidays. My mum also had severe reactions to the sun and although ok as a child my sister too developed sun sensitivity at around 18 years of age. Maybe a common toxitiy issue, maybe a genetic issue, maybe a combination of the two. Who knows?

I come out in a red itchy rash. The spots are quite small but often merge together to form a continuous red mass. Before the spots appear, my skin starts to prickle. It is not instantaneous, depending on the strenghth of the sun I may be able to have up to a few hours of sun before reacting or it may be after a few days each with some sun exposure before I react. At other times I may start to react within 10 mins.

Once I have had a full blown reaction, I need to avoid the sun for several days. Any exposure before I have recovered will result in a rapid reaction.

I can to some degree aclimatise and build up some resistance so that I can tolerate more sun. Unfortunately the British weather is not reliable or consistent enough for me to do this with much success. In my teens we had a sunbed and I was able to build up some tolerance using that. I had to start with seconds at a time.

It is not prickly heat. I only react on skin exposed to the sun and do not have to be hot. I am fine in saunas.

Back in 2013 / 2014 I was experimenting with a heart rate variability (HRV) monitor. I had an emwave for those familiar with such things. I bought it hoping to improve my emotional and mental health. Around then I was starting to experience increasing gut problems and had the idea of using my emwave to track my heart rate variability to identify problematic foods. I had a startling reaction one day where my HRV basically flat lined. I then ate each food from that meal in isolation to identify the problem food but did not get a repeat. It finally dawned on me that the meal with the flat line tracing was eaten outdoors in the sun whereas the others were eaten inside.

Long story, short, some experimentation showed that it was sun exposure that was causing my HRV to deteriorate. I have some screen shots showing the tracings. The first two (indoors and outside at night) are typical for me. I do get some jagged and erratic tracings according to my mood and other factors. You can see the indoors one is smoother than the outside at night one but they are both good illustrations of the typical HRV I experience. In contrast the one in the sun shows virtually no variability in my heart rate!
Lack of variability in your heart rate is not at all good from a health perspective and I found this rather alarming (and still do to be honest). It is particularly interesting that this effect on my HRV happened way before my skin started to react. I had no idea that my sun exposure was problematic.

I haven't done any more recordings or experimentation to see what happens at different times of the day. No matter the HRV I can't avoid all sun and don't believe it is healthy to do so. To avoid becoming paranoid about going out in the sun, I try not to think about it. However, given the discussions currently taking place,I thought others might be interested in this, and decided I would share.

Added: the top photo is indoors, the next one outside at night, the bottom one in full sun.

Sun exposure and Heart Rate Variability

This isn't really an update but a sharing of my experience with sun exposure. There have been a few posts about this recently since we are now seeing some sunshine. I have also been wanting to share what happens with my heart rate variability when in the sun as it is pretty dramatic and shows that more is going on than simply a skin sensitivity. I would love to hear if anyone has any thoughts about this aspect in particular. I've given quite a bit of background first. The heart rate bit is at the end.

I am one of those that is often described as "intolerant" of the sun. When I was a child I was told I was "allergic" to the sun. The term polymorphic light eruption is used to describe the type of reaction I have.

As a child I was prescribed high factor sun cream and was often seen in long sleeved blouses and wide brimmed sun hats. I did also play in paddling pools in swim wear but long periods in the sun were out. We did not go on beach holidays. My mum also had severe reactions to the sun and although ok as a child my sister too developed sun sensitivity at around 18 years of age. Maybe a common toxitiy issue, maybe a genetic issue, maybe a combination of the two. Who knows?

I come out in a red itchy rash. The spots are quite small but often merge together to form a continuous red mass. Before the spots appear, my skin starts to prickle. It is not instantaneous, depending on the strenghth of the sun I may be able to have up to a few hours of sun before reacting or it may be after a few days each with some sun exposure before I react. At other times I may start to react within 10 mins.

Once I have had a full blown reaction, I need to avoid the sun for several days. Any exposure before I have recovered will result in a rapid reaction.

I can to some degree aclimatise and build up some resistance so that I can tolerate more sun. Unfortunately the British weather is not reliable or consistent enough for me to do this with much success. In my teens we had a sunbed and I was able to build up some tolerance using that. I had to start with seconds at a time.

It is not prickly heat. I only react on skin exposed to the sun and do not have to be hot. I am fine in saunas.

Back in 2013 / 2014 I was experimenting with a heart rate variability (HRV) monitor. I had an emwave for those familiar with such things. I bought it hoping to improve my emotional and mental health. Around then I was starting to experience increasing gut problems and had the idea of using my emwave to track my heart rate variability to identify problematic foods. I had a startling reaction one day where my HRV basically flat lined. I then ate each food from that meal in isolation to identify the problem food but did not get a repeat. It finally dawned on me that the meal with the flat line tracing was eaten outdoors in the sun whereas the others were eaten inside.

Long story, short, some experimentation showed that it was sun exposure that was causing my HRV to deteriorate. I have some screen shots showing the tracings. The first two (indoors and outside at night) are typical for me. I do get some jagged and erratic tracings according to my mood and other factors. You can see the indoors one is smoother than the outside at night one but they are both good illustrations of the typical HRV I experience. In contrast the one in the sun shows virtually no variability in my heart rate!
Lack of variability in your heart rate is not at all good from a health perspective and I found this rather alarming (and still do to be honest). It is particularly interesting that this effect on my HRV happened way before my skin started to react. I had no idea that my sun exposure was problematic.

I haven't done any more recordings or experimentation to see what happens at different times of the day. No matter the HRV I can't avoid all sun and don't believe it is healthy to do so. To avoid becoming paranoid about going out in the sun, I try not to think about it. However, given the discussions currently taking place,I thought others might be interested in this, and decided I would share.

Added: the top photo is indoors, the next one outside at night, the bottom one in full sun.

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#13 · June 23, 2020, 7:03 am

I love following your log, @rachel ! 🙂 You share such interesting observations.

I do not know much HRV, but from what you have explained that is absolutely amazing. 🤯 There is so much to learn about the human body, eh? I have little knowledge, so I couldn’t even begin to guess at an explanation, but as you said it is super interesting that your heart reacted so quickly, well before you skin. Crazy stuff...

“I have noticed a dark green tinge to my stool and wonder what this is. Hopefully it is a sign that I am excreting some nasties.”

Apparently iron supplements can cause the stool to turn green. Maybe you are lowering iron? 🤞If possible, that’d be super cool. 😃

Yeah, I think I lowered my legume intake initially for similar “diet theory” reasons... WHYYY? Lol.

It’s cool the homeopathy seems to be doing something! I have reservations about it too, but I can’t see a reason to criticize something that harmless.

“I am considering testing my hair as I would like to assess my mineral status, in particular Molydenum and Selenium. I might trial these cautiously first to see if I tolerate them since there is no point paying for tests if I can't act on the results.”

Did you ever give these a try? I still have not had my consultation with Dr. Smith, but from what they told me he focuses on minerals with POTS patients.

ETA: Now that I think about it... I wonder if the sun affects electrolytes and mineral balance somehow? Vitamin D affects calcium, but you wouldn’t think it be something that could happen rapidly enough to affect your heart so quickly. Anyway, I know nothing about it, but thought I would mention it in case someone else knows more.

The progress you have made so far is exciting. I do not have much to add on the CFS/ME discussion at this point (although I found it interesting, thanks guys), but I do hope we are on the right track with this.

#14 · June 23, 2020, 8:32 am

Quote from Rachel on June 23, 2020, 8:32 am
@puddleduck Thanks so much for your reply. I get quite anxious when posting and you've given me quite a boost!
Yeah, it's really weird the HRV in the sun. I'm eager to see if my reactivity goes down once I'm further along in the detox.

Unfortunately the green in the stool is unlikely to be iron 🙁 Would have been nice. I've just had my levels checked and am off tomorrow to have a phlebotomy, with another scheduled next month. I'm no longer getting that (green stool) so whatever it was it seems to have passed for now. I do often get stool changes with the homeopathic detox so perhaps it was that. It's hard to sort it all out when you are doing several things at once.

No I haven't tried the minerals yet but I have decided to work with Dr Smith regardless. I'm awaiting my hair test kit.

I tested my serum retinol recently and it has gone up. (attached file with results)

The first test was done when I was still ingesting a lot of VA (and continued to do so until end feb 2019). I was actually concerned about deficiency - oh how we laugh!!! The second test was after about 6 months low VA but with no soluble fibre. The third test is after 2 - 3 months soluble fibre. I think I have higher levels in test 3 because of the soluble fibre. Hoping it shows that I'm finally mobilising and detoxing the stuff. It's probably a more accurate reflection of where I'm at in the detox process so still a way to go.

It was disappointing to see my levels go up but I had a feeling it might so it wasn't a total shock. The next test will be more interesting.

Frustratingly I think I made little progress in my first year of low VA due to the lack of soluble fibre. I wasn't increasing my toxicity but I doubt I cleared much of the stored VA in my body. I really don't want there to be a bottle neck in my detox pathways due to mineral deficiences that will hamper my progress further so I decided I would take the plunge with the testing and consult. I've been dithering about for ages wondering if I should wait until my gut improves somewhat before getting tested but then what if my gut won't improve until I get the right nutrients? Kind of a circular dilema. We shall see.

I hope your consult goes well.

@puddleduck Thanks so much for your reply. I get quite anxious when posting and you've given me quite a boost!
Yeah, it's really weird the HRV in the sun. I'm eager to see if my reactivity goes down once I'm further along in the detox.

Unfortunately the green in the stool is unlikely to be iron 🙁 Would have been nice. I've just had my levels checked and am off tomorrow to have a phlebotomy, with another scheduled next month. I'm no longer getting that (green stool) so whatever it was it seems to have passed for now. I do often get stool changes with the homeopathic detox so perhaps it was that. It's hard to sort it all out when you are doing several things at once.

No I haven't tried the minerals yet but I have decided to work with Dr Smith regardless. I'm awaiting my hair test kit.

I tested my serum retinol recently and it has gone up. (attached file with results)

The first test was done when I was still ingesting a lot of VA (and continued to do so until end feb 2019). I was actually concerned about deficiency - oh how we laugh!!! The second test was after about 6 months low VA but with no soluble fibre. The third test is after 2 - 3 months soluble fibre. I think I have higher levels in test 3 because of the soluble fibre. Hoping it shows that I'm finally mobilising and detoxing the stuff. It's probably a more accurate reflection of where I'm at in the detox process so still a way to go.

It was disappointing to see my levels go up but I had a feeling it might so it wasn't a total shock. The next test will be more interesting.

Frustratingly I think I made little progress in my first year of low VA due to the lack of soluble fibre. I wasn't increasing my toxicity but I doubt I cleared much of the stored VA in my body. I really don't want there to be a bottle neck in my detox pathways due to mineral deficiences that will hamper my progress further so I decided I would take the plunge with the testing and consult. I've been dithering about for ages wondering if I should wait until my gut improves somewhat before getting tested but then what if my gut won't improve until I get the right nutrients? Kind of a circular dilema. We shall see.

I hope your consult goes well.

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#15 · June 23, 2020, 10:25 am

Quote from salt on June 23, 2020, 10:25 am

Quote from Rachel on June 23, 2020, 8:32 am

@puddleduck Thanks so much for your reply. I get quite anxious when posting and you've given me quite a boost!
Yeah, it's really weird the HRV in the sun. I'm eager to see if my reactivity goes down once I'm further along in the detox.

Unfortunately the green in the stool is unlikely to be iron 🙁 Would have been nice. I've just had my levels checked and am off tomorrow to have a phlebotomy, with another scheduled next month. I'm no longer getting that (green stool) so whatever it was it seems to have passed for now. I do often get stool changes with the homeopathic detox so perhaps it was that. It's hard to sort it all out when you are doing several things at once.

No I haven't tried the minerals yet but I have decided to work with Dr Smith regardless. I'm awaiting my hair test kit.

I tested my serum retinol recently and it has gone up. (attached file with results)

The first test was done when I was still ingesting a lot of VA (and continued to do so until end feb 2019). I was actually concerned about deficiency - oh how we laugh!!! The second test was after about 6 months low VA but with no soluble fibre. The third test is after 2 - 3 months soluble fibre. I think I have higher levels in test 3 because of the soluble fibre. Hoping it shows that I'm finally mobilising and detoxing the stuff. It's probably a more accurate reflection of where I'm at in the detox process so still a way to go.

It was disappointing to see my levels go up but I had a feeling it might so it wasn't a total shock. The next test will be more interesting.

Frustratingly I think I made little progress in my first year of low VA due to the lack of soluble fibre. I wasn't increasing my toxicity but I doubt I cleared much of the stored VA in my body. I really don't want there to be a bottle neck in my detox pathways due to mineral deficiences that will hamper my progress further so I decided I would take the plunge with the testing and consult. I've been dithering about for ages wondering if I should wait until my gut improves somewhat before getting tested but then what if my gut won't improve until I get the right nutrients? Kind of a circular dilema. We shall see.

I hope your consult goes well.

Do you feel better or worse since you started with soluble fibre?

Quote from Rachel on June 23, 2020, 8:32 am

@puddleduck Thanks so much for your reply. I get quite anxious when posting and you've given me quite a boost!
Yeah, it's really weird the HRV in the sun. I'm eager to see if my reactivity goes down once I'm further along in the detox.

Unfortunately the green in the stool is unlikely to be iron 🙁 Would have been nice. I've just had my levels checked and am off tomorrow to have a phlebotomy, with another scheduled next month. I'm no longer getting that (green stool) so whatever it was it seems to have passed for now. I do often get stool changes with the homeopathic detox so perhaps it was that. It's hard to sort it all out when you are doing several things at once.

No I haven't tried the minerals yet but I have decided to work with Dr Smith regardless. I'm awaiting my hair test kit.

I tested my serum retinol recently and it has gone up. (attached file with results)

The first test was done when I was still ingesting a lot of VA (and continued to do so until end feb 2019). I was actually concerned about deficiency - oh how we laugh!!! The second test was after about 6 months low VA but with no soluble fibre. The third test is after 2 - 3 months soluble fibre. I think I have higher levels in test 3 because of the soluble fibre. Hoping it shows that I'm finally mobilising and detoxing the stuff. It's probably a more accurate reflection of where I'm at in the detox process so still a way to go.

It was disappointing to see my levels go up but I had a feeling it might so it wasn't a total shock. The next test will be more interesting.

Frustratingly I think I made little progress in my first year of low VA due to the lack of soluble fibre. I wasn't increasing my toxicity but I doubt I cleared much of the stored VA in my body. I really don't want there to be a bottle neck in my detox pathways due to mineral deficiences that will hamper my progress further so I decided I would take the plunge with the testing and consult. I've been dithering about for ages wondering if I should wait until my gut improves somewhat before getting tested but then what if my gut won't improve until I get the right nutrients? Kind of a circular dilema. We shall see.

I hope your consult goes well.

Do you feel better or worse since you started with soluble fibre?

#16 · June 23, 2020, 10:26 am

I think some of us believe that VA has some usages (such as, as a weapon) and so having some extra circulating that day might just be because you were "fighting" something? And I suppose that it is a good thing to be using your VA? And maybe in primitive times we used more? I liked the idea posted the other day that perhaps we should be testing our abdominal fat vs our blood.

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#17 · June 24, 2020, 3:03 am

Quote from Rachel on June 24, 2020, 3:03 am
@salt "Do you feel better or worse since you started with soluble fibre?"

I haven't seen any massive changes so it's difficult to say for sure. My impression is that my basic energy levels have improved slightly. They seem more stable - the peaks and troughs are smoother. My health is so poor that I'm not expecting any quick changes. It's going to be long and slow for me I suspect.

My gut is still very sensitive but I have less pain when I'm sticking to my safe foods than previously. I haven't introduced any new foods.

The biggest change is to my bowel movements. I go daily now and am no longer constipated. This had improved a bit before the soluble fibre but has improved a lot more since.

I have had periods where I have felt worse which seems to be common when introducing soluble fibre. If you go too fast you can stimulate your detox pathways more quickly than your body can cope with. These have soon passed though.

Pychologically I feel better because when I look at nutrition data bases I am now covering my nutrients pretty well. The beans have brought up some vitamins and minerals I was low in. Theoretically at least, assuming I am absorbing them.

@lil-chick I hadn't considered a short term blip in my levels but it is a possibility. I haven't had any signs that I'm fighting anything off or any injury. Also serum ferritin tends to spike with inflammation and immune responses and although mine has gone up it's in line with my usual increases and not out of the ordinary for me. I had that tested at the same time, alongside other blood work which didn't throw up anything abnormal. My increased serum VA fits with what Dr Smith has observed in many of his patients when they introduce soluble fibre so I'm inclined to think my increase is related to the soluble fibre. (Maybe that's just wishful thinking as I would welcome signs that I am on the right track. As I get further along in the process and get more tests done, a clearer pattern should emerge.)

@salt "Do you feel better or worse since you started with soluble fibre?"

I haven't seen any massive changes so it's difficult to say for sure. My impression is that my basic energy levels have improved slightly. They seem more stable - the peaks and troughs are smoother. My health is so poor that I'm not expecting any quick changes. It's going to be long and slow for me I suspect.

My gut is still very sensitive but I have less pain when I'm sticking to my safe foods than previously. I haven't introduced any new foods.

The biggest change is to my bowel movements. I go daily now and am no longer constipated. This had improved a bit before the soluble fibre but has improved a lot more since.

I have had periods where I have felt worse which seems to be common when introducing soluble fibre. If you go too fast you can stimulate your detox pathways more quickly than your body can cope with. These have soon passed though.

Pychologically I feel better because when I look at nutrition data bases I am now covering my nutrients pretty well. The beans have brought up some vitamins and minerals I was low in. Theoretically at least, assuming I am absorbing them.

@lil-chick I hadn't considered a short term blip in my levels but it is a possibility. I haven't had any signs that I'm fighting anything off or any injury. Also serum ferritin tends to spike with inflammation and immune responses and although mine has gone up it's in line with my usual increases and not out of the ordinary for me. I had that tested at the same time, alongside other blood work which didn't throw up anything abnormal. My increased serum VA fits with what Dr Smith has observed in many of his patients when they introduce soluble fibre so I'm inclined to think my increase is related to the soluble fibre. (Maybe that's just wishful thinking as I would welcome signs that I am on the right track. As I get further along in the process and get more tests done, a clearer pattern should emerge.)

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#18 · May 25, 2021, 4:19 pm

Quote from Rachel on June 24, 2020, 3:03 am

Also serum ferritin tends to spike with inflammation and immune responses and although mine has gone up it's in line with my usual increases and not out of the ordinary for me.

Rachel, to what degree your ferritin grown if you don't mind me asking?

Ferritin is usually associated with viral based inflammation, while CRP with bacterial one:

https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1005973

^^. Bacterial- and viral-induced inflammation are characterized by differential plasma levels of CRP and ferritin.

Another thing is when your A levels will finally start to drop you could probably expect another spike in ferritin, also it could make you anemic(due to raised hepcidin):

https://www.ncbi.nlm.nih.gov/pubmed/31052280

In populations with a high risk of anemia and micronutrient deficiency, vitamin A supplementation (VA-Sup) has been suggested as a strategy for improving Hb levels and ameliorating anemia. A recent meta-analysis of VA-Sup on anemia and iron status in different life stages (not including OA) showed that VA-Sup reduced the risk of anemia by 26% by improving hemoglobin and ferritin levels in individuals with low serum retinol (but without effects on the prevalence of ID by using serum ferritin as biomarker).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6566922/table/nutrients-11-00988-t002/?report=objectonly

Retinol <20 μg/dL
High s-ferritin (≥350 ng/mL) 22%

Retinol >= 20 μg/dL
High s-ferritin (≥350 ng/mL) 6.7%

#19 · March 4, 2022, 7:38 pm

Hello @rachel! 😊

It’s been a little while. How have you been doing? 🙂 I presume you’re still plodding along this frustratingly winding path of detox?

Haha, yeah when you think about it, what a weird wild world we have...sending out such personal stories through the internet wondering if anyone will respond. I do so appreciate being able to connect in this web space though, however strange and anxiety-provoking it might be at times! 😁

Are you still doing the hair testing with Dr. Smith? How did that end up going? Are you continuing to track your serum retinol level? Are you still keeping the supplements as minimal as possible, or are you able to tolerate experimenting with more now than you were before? Oh and yes, has there been any change to your sun tolerance?

I am so curious about the process our individual bodies go through in repairing ourselves... What is prioritized and why?

I hope you are doing well, but regardless I’m sending more healing vibes and hope your way, Rachel! 🌈

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#20 · March 25, 2022, 9:25 am

Hi @puddleduck
Thanks for asking after me. I'm not ignoring you! I've just read your updates on your log and I'm going through a similar period of feeling dispirited and I don't want to write when I'm feeling down.
I did have some improvements last year which was encouraging. They were small but in the context of my snails paced recovery quite pleasing. However I'm struggling somewhat this year. I'll write soon. 🙂

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