How food influences CFS in my experience

 

I have had CFS since my teens, and especially strongly in two periods (including right now).

From the beginning, I knew that food played a role in how well I do. The type of food plays a role, as does when I eat, and – as I discovered more recently – having some minimal fat reserves.

Type of food. I tend to do best when I eat mostly vegetables and meat, with smaller amounts of grains and fruit, and minimal to no dairy and sugar. The less processed the better. And I prefer organic and locally produced food. I am from Northern Europe, and I notice I do well on traditional Northern European foods. Perhaps it’s genetics, or just what my body is used to, or the climate, I don’t quite know.

I especially like warm food that’s delicious and easy and quick to prepare. Slow cooked stews with bone broth is a favorite.

When I eat. I tend to eat relatively frequently. My main meal is often breakfast, and it’s often vegetables and meat. Lunch and dinner are typically similar. Although I do mix it up according to what I notice I am drawn to. It’s good to not be too strict. (For instance, I had muesli with kefir a couple of days ago and it felt right and good then. And I do sometimes eat chocolate.)

Fat reserves. I have been slim to skinny my whole life, and unable to put on weight even when I have intentionally tried to. This spring, I did a combination of Vortex Healing and using an app in order to put on more weight, and it worked within a week. (The Vortex Healing was for my digestive system and to support my body in absorbing and making use of nutrients.)

I am now up to 84kg (184cm tall) and have a minimal to moderate layer of fat on my body for the first time. It feels like an important and helpful buffer for me. I used to have energy crashes if a meal was delayed or I missed a meal. Now, that doesn’t seem to happen anymore. Joey Lott and others talk about the importance of eating enough in order to deal with and perhaps recover from CFS, and that fits my experience as well.

Additional notes. As I mentioned above, I am not terribly strict in my diet. Now and then, I do eat some grains, some dairy (cheese, kefir), and some sugar (mostly in the form of chocolate). I also find that butter seems to really help me, so I tend to melt butter on most warm meals. I should also say that I do some strength training and typically walk a good deal, so I try to stay as fit as I can within the limitations of having CFS.

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Dampness

 

From my late teens, I have known that I have dampness in my system according to Chinese medicine.

I assume it’s connected to some of my health challenges, including the fatigue and brain fog.

Adam S. has given me Vortex Healing sessions to strengthen and optimize my system, and he has started working on the dampness more directly. After that, we’ll work on the emotional issues behind it which he says seems to be a sense of deep aloneness and feeling sorry for myself. (“I am totally alone, nobody is here for me, it’s all just horrible”.)

I see that these are also connected to beliefs and identities about missing out and being unloved.

About the dampness, I have noticed since my teens that dry and warm climates work much better for me than cold and damp, fireplaces are helpful when it’s cold or damp, and it’s also much better for me to avoid foods like dairy, sugar, and bananas.

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My crashes

 

After I got CFS some years ago, I have had occasional crashes.

These typically happen through a combination of three factors:

(a) A disappointment about the day. I had looked forward to something, it didn’t happen or didn’t happen the way I thought it would, so I got disappointed. (I had invested certain images and ideas about the day with energy.)

(b) I didn’t have enough food or the right type of food soon enough.

(c) The reason was that I didn’t take care of my own food needs fully due to being with others, and wanting to not bother them too much. (Without knowing it at the time, I want to be liked and not inconvenience others more than avoiding a crash.)

This sounds very specific, but it has happened a few times just like this. The next thing that typically happens is that I feel out of it, I go quiet, and I don’t have much energy. And the one(s) I am with tend to take it personally. They think it’s about them, that I don’t like them, don’t want to be with them etc. even if that’s far from my experience.

There are several lessons for me here:

Bring food, and especially protein rich food, even if I think I’ll have a meal soon. (A meal that is postponed is often a precursor to these crashes.)

Speak up for myself and take care of my own needs, even if I think it’s an inconvenience to the one(s) I am with. It’s more of an inconvenience for them and me if I don’t and then crash.

Work on my tendency to get my hopes up for doing certain things on a special day out and then get disappointed when it doesn’t happen. I often am very aware that my images about the future are just that, and I don’t invest them with that much energy or hope. But sometimes, I do, and that’s when these crashes tend to happen.

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Vortex on kidneys and other of my own issues

 

Kidneys. For many years, I have noticed a weak kidney energy. Initially, it seemed like an energetic “hole” in the kidney area/lower back, and then – especially through Breema – it started filling up. Since then, it’s been quite weak although it fluctuates. (It may have to do with fear and/or trauma, and I have also had kidney stones which may be related.)

I have been using Vortex Healing on this weak kidney energy. Right now, I am especially drawn to running Vortex to clear and energize the energy pathways in and related to the kidney area. I notice that the energy seems to be working on blockages. and there is some discomfort coming up. This discomfort is something I have noticed before related to the weak kidney energy, and it seems to have an emotional component. I may ask to be shown what is is about. And I plan to add to this as I discover more or things shift.

Update: After doing this for a morning, there was a shift. The energy in the kidney area/lower back feels softer and more full now. I have been drawn to run Vortex on the tissue in the area since. (I do it off and on as I have time and remember.)

Brain fog. For a day or two, I have used vortex on my brain fog. Initially, the energy worked in the frontal lobe/forehead area. Now, in the evening, it’s working more in the lower brain/brainstem area. I’ll keep running the energy.

Vortex Healing

 

I have had three vortex healing sessions since last Thursday. I initially dismissed it because of the new agey name and terminology but decided to try it based on testimonials. After the first session, I changed my view.

Here is a brief report on each session with the most recent on top. I may add more here as I do more sessions.

Basics course April 12-17, 2016

Prior to the workshop: A lot has come up over the last few weeks leading up to the course. I have also felt the VH energy work in different areas of my body at times (or so it seems). Both the VH people I know says that this is not uncommon. It’s the energy preparing me for the course.

What I have noticed the most is mostly two things: (a) Heartbreak, fear in the heart connected to a sense of abandonment that’s wordless and agonizing. And (b) the energy at times working on my frontal lobes. I have noticed that this area has felt “off” energetically since I got the strong CFS/PTSD and has been in need of healing. (The “off” sense and need for healing may be related to the diksha I received just before all this happened.)

Day one. The energy was quite strong through my body and also moving between areas (especially head). I walked a lot today to get fresh air and movement.

Day two. The vortex wheel was operation by the end of the afternoon so I spent a couple of hour in the evening running different types of vortex lights, and running vortex for different issues. The energies were quite strong, in different areas of the body depending on the issue, and the different vortex lights had very different qualities. I slept well and through the night for the first time in weeks, perhaps because I used the dream blue vortex before falling sleep.

Day three. A deepening from the previous day. I went on a long walk in the evening (from Rudramandir in Berkeley to where I am staying in Rockridge) and ran vortex on a self-destructive pattern I have noticed in myself. (This self-destructive pattern came in or was amplified when I went against my guidance on a major life issue. I was very much aware of it and struggled with myself since I wanted to follow what was so clearly right but was unable to do so. I was paralyzed by fear and conditioning and unable to break free from it until I finally was able to.)

Day four. I received a 10 minute session from Gailynn before class on trauma and a hyperactive/hypervigilant nervous system. (This takes a lot of energy and takes the form of sound sensitivity, discomfort when I am in noisy places or places with lot of people.) She said I had the energy of a soldier whose been to war, and that’s my experience as well. It’s possible this is from “being pushed into war” in past lives, as she said, or there may also be things from this life. She also gave me and another student a mini-session on Lyme. And she pointed out that I have a depleted energy system, which I am very aware of (the kidney energy is especially low), and that it will be good for me to use Vortex to energize my system (which I am doing and plan to continue with).

Day five. I am getting a better sense of how to connect with the Vortex wheel etc. (ask for it), the different qualities available, and how to use them. I also started doing VH on myself at different ages, which has been an interesting experience. (I assume it heals any wounds left in me from what happened at different ages from before conception and up.)

#9 April 9

A session in person with NW in Oakland. He worked on subtle energy pathways since that’s one of the things that needs to be done in person. Apparently, there were some blocks in the heart area. He then worked on draining the manifesting energy behind the Epstein-Barr virus. For the rest of the session, he worked on me feeling undeserving of a good life and a self-sabotaging dynamic. (I have a pattern of getting close to what feels deeply right to me, or even having it, and it then falling apart and away within a very short time. This dynamic came gradually more to the foreground after I went against my clear inner guidance on a major life decision some years ago.)

My “homework” is to recognize the undeserving dynamic for what it is: Created by the mind. Inherently without substance. Made up by energies and imaginations.

Mini session April 8

On and off for at least a couple of weeks now, I have had an energy/sensation in my heart area that’s familiar to me. As mentioned below, it feels preverbal (from infancy?) and as a matter of life-and-death. The sensation itself is not so strong, but it’s what my mind does with it – the stories it attaches to it – that makes it seem almost unbearable. I asked my friend KD to do a brief VH session on it, and he agreed. The session lasted about 15 minutes. I noticed that the uncomfortable sensation in the heart area disappeared and/or shifted almost right away. The VH energy then seemed to go down to the solar plexus and finally up to the frontal lobes.

After the session, KD said there was some fear in the heart, he did a few things to transform it, and also some repatterning of the consciousness.

#8 Sunday April 3 

Sixth session with NW. This was focused on a deep abandonment issue that comes up for me now and then. (It seems preverbal and almost as a matter of life-and-death, and it may be from infancy.) He did all the steps of the protocol, and said it was a straightforward session. I noticed a (comfortable) burning energy in my head, moving down to the heart, moving down legs to the feet, and then a warmth at the solar plexus.

NW also explained that in the month leading up to a basics/foundations class (which I am doing in about 10 days) the energy will work on and prepare the participants. That may explain why my sleep has been unusually fragmented for the last few weeks. I had a sense it had to do with the VH energy.

Update the following day: I woke up this morning and my first impression and thought was that something was missing from me. Then I remembered the session the night before.

I also have had a sense of the energy/intelligence working on me before and after sessions, sometimes for days, and that may be true. It does fit what NW said about the energy/intelligence working on participants of the basics course starting a month or so before the course. (I know this sounds woo-woo to many, but it does seem accurate based on my own experience.)

Update some days later: At times, it seems that the VH energy is working on me quite strongly on its own accord. Right now, mainly in the head and forehead area. (With the CFS and PTSD, I have for a while had an energetic sense that the frontal cortex has especially needed healing.)

#7 Monday March 28 (1/2 hour) 

Fifth session with NW. He focused mostly on the remaining Epstein-Barr viruses and said they were about 95% gone at the end of the session. (Most or all of the active infection gone, the dormant left.) He also strengthened the immune system and made it more alert to the remaining EPV.

#6 Monday March 21

Fourth session with NW. This was mainly focused on the Epstein-Barr virus (EPV) infection. He said the EPV is cleared about 70% so far. He also finished the main steps for working on the brain fog, although there is more that can be done. And he spent a few minutes energizing the kidneys. (I have noticed a weak kidney energy since my twenties.)

I didn’t notice that much effect of this session, perhaps because it mainly focused on an infection already “knocked back” to some extent with herbal medicines.

#5 Monday March 14

Third session with NW. He first focused on the Epstein-Barr infection and “knocked it back” although need more work to eliminate it completely he said. He also removed some conditioning around the brain fog. And strenthened my kidney energy (which I have known/felt is weak for long time) and improved the chi flow through my cells. As I was curious, he checked and said I have about 22 karmic knots.

#4 Monday March 7 

This session was my second with NW from the Bay Area and we decided to focus on the victim identity. (An identity that has surfaced more strongly since the onset of CFS / PTSD.) I did notice some energies during the session, and especially in/around the head during the last 10 minutes.

I’ll spend some time exploring the victim identity more intentionally. Right now, I notice the energy that makes it up, and that it’s connected to stories giving it meaning. He did say that he sensed the particular flavor has to do with nobody helping, and that fits my experience. Especially during elementary school, I felt quite alone and that nobody (or very few) were on my side. I especially felt that nobody were consistently on my side, there were nobody I could lean on or trust to always be there for me.

I am writing this within an hour of the session so there may be more to report tomorrow morning and in the next few days.

Update: The vicitm identity came up quite strongly the following one or two days, but it was much easier to be present with it and see it more for what it is. (Created by images and thoughts without further reality.) It hasn’t come up much since. (I am writing this three weeks later.)

In general after the first three sessions

I have noticed a “high” from two of the three first sessions, and this naturally tapers off over a few days. What stays seems to be the deeper (structural?) changes, such as the healing of the 2nd chakra divine line (very noticable difference) and a deeper sense of strength following the third session.

Another change I notice, as mentioned below, is that I am listening to Arvo Part again, I do tonglen, and I do sitting meditation again.

#3 Tuesday night

A session over Skype with NW in the Bay Area. (Who happens to be a friend of friends of mine there.)

He focused mostly on strengthening my system. Again, I experienced some presence and energies during the session, and lasting for perhaps one or two days. I also did feel stronger when I woke up this morning and through the day.

After this session, I have experienced a good deal of energy running through my system and I have had several nights where I only slept 2-3 hours due to this. (I take it as a good sign. It may be that my system just needs time to figure out how to deal with and integrate it.)

I have also been inspired to do more formal sitting meditation again on my own, which I haven’t since I got the CFS some years ago. And I have listened to Byron Katie which I haven’t for a long time.

#2 Sunday morning 

A session over Skype with JC in England.

This was mostly focused on the Lyme infection. I experienced some energies during the session. About half an hour following the session I experienced a burning sensation through my body. This lasted for two or three days, and longest in the head area.

#1 Thursday night 

A session in person with KD.

During the session, I could feel a strong presence and energy in and around me, and a lot of movement in my belly.

Here are some notes he sent to NW in the Bay Area whom I did a session with a few days later.

  • fixed broken divine line in 2nd chakra (yay!)
  • put in most of the standard treatment structures available at Omega level (his system really liked the fascia alignment structures)
  • energized the system with All-Energetics wherever it was most needed (in his case, the sacral/lumbar spine)
  • broke timelines twice in P’s “gut brain”
  • broke timeline on how his system is still in the broad holding pattern of the chronic fatigue
  • checked to see if an infection was present and confirmed it was since I was able to run some tools on it, but for only 10 mins (I had limitations on time)
  • re-patterning and integration at the end

The broken (or blocked?) divine line at the 2nd chakra can apparently create a range of health, emotional, and life problems. I have certainly had my fair share of these since the sudden onset of CFS, PTSD and the darkest part of the dark night.

The morning after this session, I woke up noticing a significant change and thought “I have my old belly back”. The much more healthy belly than what I have experienced over the last 6-7 years (with CFS, PTSD etc.).

I also experienced the full and nourishing feeling I do after having a Five Element acupuncture session, although the energy this time was stronger and lasted longer.

After the session, I found myself drawn to music and practices that were an important part of my life before the onset of the strong CFS / dark night phase. Specifically, the music of Arvo Part and the tonglen practice. (During the strong CFS / dark night phase, I still theoretically appreciated it but found it very difficult to listen to the music or actually do tonglen. Something in me was not aligned with it.)

It seems that Vortex Healing is without the backlash that most energy healing modalities have for me. I suspect it’s because it’s guided by – as they say – divine intelligence.

CFS, Lyme and personality changes

 

The real reasons behind the CFS label, and also Lyme infections and co-infections, often create personality changes. Along with fatigue and brain fog and some other things, these personality changes can be among the most challenging symptoms. They certainly have been for me.

In my case they include:

Reduced executive functions. Poor memory. Difficulty making and following through on plans. Difficulty taking care of essentials in life.

Hypersensitivity to sound, chemicals, and my environment in general. Avoiding noisy places.

Having to say no to or cancelling invitations due to fatigue and feeling terrible. (And people sometimes interpreting it differently and getting upset.)

Withdrawing from family and friends due to fatigue and brain fog. (Again, with people sometimes interpreting it differently and perhaps themselves withdrawing.)

Emotional rawness, turmoil and instability. Anxiety. Dread. Irritability. Bursts of anger. All of these are uncharacteristic for me as they have played out after the serious CFS returned and also after I got Lyme.

Vulnerabilities, weaknesses, and hangups amplified and coming to the surface. These surface since there isn’t much energy to cope with them as I did before the CFS.

And the fatigue, brain fog, and what’s listed above, often leads to missing opportunities, losing much of what’s important to me, and finding myself in life situations I couldn’t have imagined finding myself in.

Chronic fatigue (CFS) means…..

 

I am also reminded of how the chronic fatigue (CFS) label really says “we don’t know what’s going on”. And for dedicated doctors, it says “we are going to find out what’s really going on with you”. (For other doctors, it says “I can’t help you”.) In my case, I was lucky to finally find a doctor who could diagnose it and help with treatment.

From a previous post.

The CFS label is a temporary and somewhat lazy label. It can be helpful as a label that includes a typical cluster of symptoms, and it does give some doctors an idea of what to look for.

I have certainly had my share of doctors who half-heartedly asked some questions and did a few tests, and for whom the label really meant “I can’t help you”. And now finally, one for whom the label meant “I can help you. I won’t give up until I figure out what’s going on with you. I have found several reasons for your fatigue and brain fog, and it can be treated”.

Chronic fatigue and spirituality

 

I have wondered about CFS and spirituality. It does seem that more people with CFS are into spirituality than average. It may be that people with CFS get into spirituality as a way to deal with it. Or that there is another connection. For instance, it’s possible that both CFS and getting into spirituality has to do with a wish to find refuge or escape from this world. That may be part of it for me as well. (And that doesn’t mean that spirituality can be reduced to wishing to finding refuge or escaping.)

From a previous post.

In my case, I got CFS at age 15 a few months after mononucleosis. There was a sense of the world becoming very far away, my head felt filled with cotton, I was severely fatigued, my brain didn’t work properly. (I didn’t think of it as CFS then, but looking back the label fits.) After about a year, there was a spontaneous opening or awakening where everything without exception was revealed as God, Spirit, consciousness, love. And that opening never really closed down. The CFS continued, although I learned to regulate it more following high school, and it was compensation for by my passion for what I did.

I then got severe CFS again some years ago, and a few months after pneumonia. (I was bedridden for 3 weeks and terribly sick. My doctor called it “walking pneumonia”! I normally don’t like to take medicines, but at that time I strongly felt I needed it, but my doctor didn’t agree.)

In both of those phases of my life, I felt quite lost and off track. Initially, combined with or because of typical teenage angst. More recently because I found myself in a situation that didn’t feel right at all, and it felt difficult to get out of it. (Getting out of it in a real way meant I had to go against or confront some very core beliefs and fears.)

So it may be that CFS is connected with feeling off track. Or seeking refuge from a difficult situation or world. Or there may be personality characteristics – such as being highly sensitivie – that makes us both interested in spirituality and susceptible to CFS. Or that may just be the mind trying to make sense of things.

What’s more real is that CFS and other illnesses does bring up our fears, beliefs, and identifications, and we can look at these. It tends to bring up what’s unfelt, unloved, and unquestioned in us, with an invitation to us to feel it, find love for it, and question the stories behind or associated with it.

Similar symptoms for multiple health problems

 

I find it interesting that most of the health problems I am diagnosed with have similar symptoms (CFS, EBV, Lyme, B12 deficiency etc.). These symptoms are mainly fatigue, brain fog (including a feeling of “cotton in the head”), and diminished executive and frontal lobe functions (planning, following through on plans, reading, remembering, reaction time).

The conventional explanation is quite simple: My system was gradually weakened, initially by stress and then EBV, which made me susceptible to all the following things (parasites, B12 deficiency etc.). And many health problems, including these, have symptoms such as fatigue and brain fog. It’s not too mysterious.

Another approach is to ask myself: If life wanted me to experience fatigue and brain fog, what would the reason be? What can I learn from it? How can it help me reorient? What’s the invitation?

To experience more of the human condition? Deepening empathy?

Get to see “what’s left” in terms of hangups, beliefs, wounds, trauma, and identifications?

Or, if the fatigue and brain fog had a protective function, what would it be? To find a sense of safety (from the world)?

There may be some truth or validity to each of these. These symptoms are common for a range of health issues. I can definitely take it as an invitation to learn and perhaps mature and deepen as a human being. And the symptoms may also have a protective function, and it’s good to look at that too.

Note: I have wondered about CFS and spirituality. It does seem that more people with CFS are into spirituality than average. It may be that people with CFS get into spirituality as a way to deal with it. Or that there is another connection. For instance, it’s possible that both CFS and getting into spirituality has to do with a wish to find refuge or escape from this world. That may be part of it for me as well. (And that doesn’t mean that spirituality can be reduced to wishing to finding refuge or escaping.)

Note 2: I am also reminded of how the chronic fatigue (CFS) label really says “we don’t know what’s going on”. And for dedicated doctors, it says “we are going to find out what’s really going on with you”. (For other doctors, it says “I can’t help you”.) In my case, I was lucky to finally find a doctor who could diagnose it and help with treatment.

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Chronic Fatigue & Lyme Update

 

I just spent two weeks in Poland and went to the Lyme/CFS clinic almost daily. It’s good to get some answers, and yet the treatments this time had less effect than last summer. I think it is because the treatment mainly focused on repairing the mitochondria, while what I more acutely need is to focus on active infections.

Here are some highlights:

Lab Reports February 2016

Active Epstein-Barr, Lyme, and two pneumonia bacteria. (I am not surprised about this. For instance, my Lyme symptoms return when I am off Artemisinin for two days a week.)

Epstein-Barr (these should be less than 2)

EBV LTT antigen 1 ug/ml  6.6

EBV LTT antigen 0,5 ug/ml  2.9

Borrelia (Lyme) (these should be less than 2)

afzelli 5.5

sensu stricto 3.1

garini 5.4

OspC 3.7

Pneumonia (these levels have increased since July 2015, which matches my experience)

Mycoplasma pneumoniae IgG  118 (has increased, was 96 in July 2015)

Chlamydia pneumoniae IgG  159 (has increased, was 118 in July 2015)

OK vitamin D3 level.

Vit. 25-OH D3 73,4 ng/ml
Not active candida.
Candida albicans IgA    < 10 U/ml
Candida albicans IgM    < 10 U/ml
OK B12 level? This was very low (127) last summer and I have taken sublingual B12 (methylcobalamin) since then. The reason my body doesn’t absorb B12 through the intestines may be parasites.

Methylmalonic acid  17 ug/l   normal range 9-32 (an indirect indicator for B12)

Magnesium are at normal levels. Selenium is at 135 ug/l (normal is 50-120) so it’s a little high, and the symptoms of high selenium fits with what I have. (It seems that just about all of the positive findings have similar symptoms, and fit with mine….!)

It’s also possible that I have heavy metals in my body (increasing the load) and parasites.

A “Food Detective” test found that my body reacts strongly to almonds and cow’s milk, and mildly to wheat, rye, oats, mushrooms, and yeast. (None of these are surprising to me. I have known about my reaction to sugar, what, and diary, and also some other grains and almonds.) It may be even more important for me to stay away from these foods since my body mobilizes against them, which means it will have fewer resources to take care of the real threats (intracellular EBV, Lyme, pneumonia).

Lab Reports from June 2015

EBV IgG 284 U/ml (Epstein-Barr antibodies, over 20 is positive)

C3A / C4A serum levels. These were low and suggested Sjøgren’s disease. Later results were negative for Sjøgren’s.

C3A serum level 0.27 (low, o.58 – 1.90 is normal range)

C4A serum level 0.37 (low, 0.57 – 1.68 is normal range)

VEGF 0.86 (within normal range)

Glucose 6 phosphate dehydrogenase 10.2 U/g Hb (normal range 7.20 – 10.50. This is a metabolic pathway providing energy to cells.)

ADH antidiurethic hormone 5.0 ng/l (normal is below 8)

Epstein-Barr

Antibodies p/EBV IgM 0.25 S/CO (negative, below 0.50 is negative)

Antibodies p/EBV IgG 59.16 S/CO (postive, over 1.00 is positive)

Vitamin 25-OH D3 37.0 ng/ml (normal/optimal range is 30-50)

Vitamin B12 127.4 pg/ml (very low, should be 200-800 range – or really 400-800 from what I read other places)

Borrelia IgM Western-Blot – negative, no reaction. (This is likely a false negative based on symptoms and other tests.)

CD3/CD8 (T-cell co-receptors)

% CD3+CD4+  13.3 (low, normal range is 19.0-38.9)

CD3+CD4+ 242  (low, normal range is 300-1200)

CD4/CD8 3.54 (high, normal range is 0.80-2.50)

CD57

% CD3+CD8+ 14.6 (low, normal range is 19.0-38.9)

CD3+CD8+ 266 (low, normal range is 300-1200)

Cortisol 472.3 nmol/l (normal range is 171-536)

Pneumonia

Antibodies p/Mycolasma pneumoniae IgA  negative

Antibodies p/Mycoplasma pneumoniae IgG 95.7 RU/ml  (over 20 is positive)

Antibodies p/Chlamydia pneumoniae IgG  118.39 RU/ml  (over 22 is positive)

Antibodies p/Chlamydia pneumoniae IgA  negative

Minerals

Sodium  146 mmol/l (little high, normal range is 136-145)

Potassium 3.97 mmpl/l (normal range is 3.5-5.1)

Chloride 109 mml/l (little high, normal range is 98-107)

ALT 24.1 U/l (normal is above 4 – not sure what this is)

AST 25.4 U/l (normal is below 39 – not sure what this is)

Hormones

TSH 2.480 ulU/ml (normal range is 0.270-4.200 – thyroid stimulating hormone)

Free thyroxine FT4  17.89 pmol/l (normal range is 12.00-22.00 – thyroid)

Triidothyrine FT3  5.68 pmol/l (normal range is 3.10-6.80 – thyroid)

Testosteron 22.36 nmol/l (normal range is 9.90-27.80)

 

Lab results from Ahus (hospital in Norway, February 2016)

Cytomegalovirus

CMV IgG Negative

CMV IgM Negative

Epstein-Barr Virus

EBV EBNA-IgG Negative

EBV VCA-IgG  345 (The Norwegian doctor says this suggest past infection. When I look at it, I see a higher number than the results June 2015 which suggests active infection.) 

EBV VCA-IgM Negative

Hepatitis

Hepatitis B virus core antigens  Negative

Hepatitis B virus surface antigens  Negative

Hepatitis C virus antigens Negative

Treatment February 2016

While at the clinic this time, I received i.v. to repair mitochondria and remove heavy metals from my body. I also did two hyperthermia treatments.

What I was prescribed while I was there:

Multimessenger (for immune system). Consists of: Colostrum/ betainehydrochlorid / Larix occidentalis/ Green Tea extract/ Punica granatum/ astragalus membranaceus/ Lentinula edodes/ Grofila Frondosa
Artemisinin 500mg x 2/day
Black cumin oil 5ml away from food – black seed oil “Ethiopia” from El-Hawag
Cholestyremine (to remove heavy metals)
Plaquenil (for parasites + possible Sjogren’s syndrome)
LDN 4.5mg
Vit D3
Probiotics

As I suspected, my doctor also recommends I go back to using antibiotics to take care of the EPV, Lyme, and pneumonia.

I also take vitamin A+K, magnesium, and eleuthero (Siberian ginseng for strength) and echinacea (for immune function).

What I am prescribed from my herbalist:

Echinacea 5g

Eleuthero to max comfort

Kapi kachu to max comfort

Methyl Folate work up to 5g

Weakened system and accumulation

Here is what I suspect happened:

I had mononucleosis at 14 or 15 followed by an initial CFS a few months later. I was sick most of high school.

I did better after high school, as long as I was careful about what I ate and to get rest when I needed.

I had a severe pneumonia 6-7 years ago which never left my system, and I had a strong return of the CFS a few months later.

I got Lyme May of 2015 (numb arms, legs, face, tongue, poor memory, severe fatigue).

It seems that each of these – the Epstein-Barr, pneumonia, and Lyme stayed in and increased the load on my system. The two periods of CFS both came a few months after a serious infection (mononucleosis and pneumonia). It’s likely that my body was initially weakened by the EPB and was then less able to fight off the rest.

It’s also possible that my system was weakened by feeling lost and off track, which I did both at age 14-15, and 6-7 years ago. During times when I have experienced a strong sense of purpose and being on track, I tend to do better.

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Health update

 

As mentioned in an earlier post, I went to a doctor in Poland this summer. He is a specialist in Lyme, and – as it turns out – also in chronic fatigue (CFS). He sent my blood off to a number of labs, and I received the results in August. The results show a number of things that all contribute to fatigue and brain fog (including poor executive functions and shaky/raw emotions).

These include: Very low B12 levels (127), epstein-barr virus (mononucleosis, often associated with CFS), two pneumonia viruses, an auto-immune disease, and Lyme.

It’s a relief to finally have more specific information about what’s been going on with me. Now, I can say it’s the things listed above, instead of using the fuzzy term CFS.

I don’t know the exact sequence of how I got these things, but here is my best guess:

When I was 14 or 15, I had mononucleosis. Some months later, I got CFS for the first time and this lasted 2-4 years quite severely. I felt I never recovered from this, and that may be true if the Epstein-Barr virus is still in my system (intracellular). After this, in my twenties and early thirties, I was able to function reasonably well as long as I could organize my own schedule and include rest when I needed it. (I was unable to follow a regular work schedule, and fortunately didn’t have to.)

Seven or eight years ago, I had pneumonia, and I never felt I got over this too. It now turns out I didn’t. The viruses are still there (also intracellular). This pneumonia preceded (and may have led to?) my second severe CFS episode some months later, much more severe than the initial one in my teens.

I assume the B12 deficiency developed over several years. It may have made me more susceptible to the pneumonia and Lyme by weakening my system so I couldn’t fight them off. It’s also possible that some of these led or contributed to (?) the B12 deficiency (not sure if that’s how it works).

It’s also possible that I have had Lyme for far longer than just this summer. Several people have suggested it, although I didn’t have any tests until now.

My doctor thinks that these are all treatable, so I am optimistic. I also know how important it is to help my system relax and strengthen in general, through diet, sleep, nourishing relationships and activities, moderate physical activity, helping my nervous system release tension and relax, doing inquiry on stressful beliefs/identities/apparent threats, and more.

Any prayers for my full recovery are welcome.

My experience with Lyme in Norway

 

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In mid-May, I noticed a numbness in hands, feet, and face, and weakness in my hands. Two weeks later, I discovered a red ring on the underside of my arm, near the armpit. I went to a doctor who thought it could be Lyme disease and gave me a five day antibiotics treatment (this was in the US). The numbness went away after one day.

Two weeks later, in Norway, the symptoms returned and were much stronger. The numbness was back in my hands, feet, and face, and now also tongue and mouth (and a bit later lower arms), along with stiff neck, very strong brain fog and grogginess, and fatigue. (The initial extremely strong fatigue and brain fog could be related to jet lag, and I also have a baseline fatigue and brain fog from the CFS. Although the unusually strong grogginess remains now even after the jetlag is gone.) I also have weak grip (things slip out of my hands), and when I get up after resting I move and feel like an old man.

I had gathered that Lyme is a controversial topic in Norway. The official position seems to be that the infection itself doesn’t last very long. (If the symptoms are longer lasting, it’s something else.) Doctors who treat this “non-existing” disease in Norway risk loosing their license, and one did even last year.

When I called my regular doctor, I got an appointment the same day by the receptionist. She called back within an hour and said that when the doctor had heard why I wanted to see him, he cancelled the appointment and said I could possibly get an appointment two months later. A bright spot: Some days later, I was able to get an appointment. My doctor looked at the red ring, did some neurological tests, and agreed that Lyme is a probable diagnosis. He gave me a relatively mild two-week antibiotics treatment.

From what I understand, it’s important to treat it more thoroughly, especially early in the process, to prevent problems later on. I got the names of some doctors who may be more knowledgeable about Lyme, and contacted several of them. The pattern was the same with all of them: When they heard why I wanted to see them, they either didn’t respond or said they possibly had an appointment about two months in the future (and to call them then to set it up).

The last one I talked with was initially friendly and welcoming, and when heard why I called responded “that’s a controversial topic in Norway, I need to go now and will call you back later, goodbye”. And then didn’t respond to my later attempts at contacting him.

The essence is that it seems impossible to get quality treatment for Lyme disease in Norway. That’s why most Norwegians with Lyme disease go to Germany or Poland to see doctors there.

Several things come up for me around this:

I had expected Norwegian doctors to at least have the integrity to tell me they can’t treat me since they may loose their license if they do. Instead, they either cancel my appointment, don’t respond, or tell me to call back in two months. (Which seems irresponsible considering my symptoms,)

Since there is disagreement about Lyme internationally, I would expect the Norwegian doctors and government to take a precautionary approach. To treat any possible or likely Lyme disease thoroughly (initial four or six week antibiotics treatment + anti-cyst medication). Instead, they chose to not treat it, avoid patients who may have it, or they treat it in a minimalistic way that may make it worse in the long run.

I don’t know the politics around this, but the official policy on Lyme in Norway does seem to be influenced by politics, and perhaps arrogance and wounded egos.

I should mention that I am among the more cautious when it comes to using medication and antibiotics (also to reduce the risk of creating more antibiotic resistant strains), but in this case, the risks of leaving it untreated or wrongly treated seem serious enough so I chose to go the medical and precautionary route.

This also triggers the victim identity in me, since it comes on top of my existing struggles with CFS, and it happened just as I left the US (where I could have received proper treatment) for Norway (where I can’t).

Update: It seems there are three possibilities when people are infected by Lyme. (a) It lasts for a relatively short period of time, and then is gone, perhaps due to antibiotics treatment. (b) It can become longer lasting, due to continued infection. (c) There may be an auto-immune response which creates problems. I am sure there are other possibilities too. I haven’t read much about it yet.

Update 2, mid-July 2015: I went to Poland to see a Lyme specialist there. It turns out that he also specializes in CFS. It’s possible that there is a weakness in my system that makes me more susceptible to both CFS and Lyme. He took a good number of tests to get an idea of what’s going on, and what the best course of treatment may be. One of the main questions is why my mitochondria seem compromised, and unable to produce as much energy as they normally would. I feel a little better, partly from what he gave me, and partly from feeling I am in good hands and that someone actually takes my case seriously and may be able to do something about it.

Update 3, July 16, 2015: I had an appointment with my regular doctor in Norway (about referal to nevrologist for CFS), and he interrupted me and changed the topic as soon as I tried to give him an update about the Lyme. I still have numbness in arms, legs, and face, a stiff neck, strong headache, very strong grogginess, memory problems, diarrhea, and more, so it seems irresponsible by him to dismiss it – to the point of not even wanting to hear about it. (The symptoms are stronger some days than other, and obviously quite debilitating.)

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