How I have treated my Lyme disease

 

I got Lyme disease a couple of years ago and had the red ring, the classic symptoms,  positive test results, and diagnosis from a few independent specialists. Although some treatments helped for a while (antibiotics, hyperthermia etc.), the symptoms always returned.

So far, two treatments seem to help me the most.

Vortex Healing. Highest level Vortex Healers use a Lyme protocol that seems to make the Lyme go dormant. From what I hear, it may also clear it completely although that may take several sessions.  (I know many are skeptical to energy healing but it has worked for me.) Until I started with the essential oils, I needed to repeat the VH Lyme treatment every half year or so.

Essential oils. A friend of a friend recommended essential oils for Lyme, and specifically, something called the Doterra protocol. (See details below.) She treated herself for a year or so, became free of any symptoms, and have so far – about two years later? – not had any recurrence.

I should add that I know people who report becoming Lyme free through using either Vortex Healing OR the essential oils, so the combination is clearly not necessary for everyone. With something as serious as Lyme, I personally tend to choose simple combinations of the best candidates instead of just one approach.

It’s hard for me to say how much my Lyme symptoms are reduced, if I am actually symptom-free, and if the Lyme is gone or not, since the Lyme symptoms are very similar to CFS and I still have CFS. The senior Vortex Healers I have checked with say they can’t find any indication of active Lyme in my system, and possibly also no dormant Lyme. I am still using the essential oils and will for perhaps a total of 1 1/2 years. I keep an eye out for the typical Lyme symptoms (for me, numb arms, legs, and face, stronger fatigue and brain fog, and emotional instability), and plan on scheduling another VH session if I notice them.

How I use the essential oils.

This is just how I use the essential oils. It’s not a recommendation or prescription. (Some say it can be harmful to take essential oils internally over longer periods of time.)

I use Doterra oils in OO (medium size) capsules.

In each capsule:
12 drops On Guard
6 drops Oregano
2 drops Frankincense
= 20 drops total in a capsule

I take one capsule a day for 14 days. Then 14 days break where I apply 2 drops of lemongrass and 1 drop of oregano on each foot daily. Repeat the cycle. As far as I understand, it’s not good to indefinitely take essential oils internally so I plan to stop after a year or so, or perhaps 1 1/2 years.

Here is how I have done it:

I got the Doterra oils. A bag of empty OO capsules. A regular dropper bottle. And a dropper with a milliliter scale. (The oils from eBay, the capsules from Amazon, and the dropper bottle can be found at any pharmacy or online.)

I fill the dropper bottle with 6 parts On Guard, 3 parts Oregano, 1 part Frankincense, and mix it by gently shaking it. (For instance, 15ml On Guard, 7.5ml Oregano, and 2.5ml Frankincense.)

Each morning, I fill a capsule with 20 drops from the dropper bottle and swallow the capsule with water right away. (The oils melt the capsules after a few minutes so the filled capsules can’t be stored.)

Thanks to Zora for sharing the Doterra info with me!

I plan on giving an update after a few more months.

P.S. The reason these are specifically Doterra oils is because of the On Guard mix. The other two oils can be from another company, although it should be a company with good quality oils.

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.

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

 

IMG_1597

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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