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)
sensu stricto 3.1
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.
Candida albicans IgM < 10 U/ml
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)
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)
% 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)
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
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)
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)
CMV IgG Negative
CMV IgM Negative
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 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)
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:
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.
Symptom list February 2016
Numb hands/lower arms + feet/lower legs + half of face/tongue (started after Lyme infection summer 2015)
Headaches, shoulder tension / pain (after Lyme infection)
Fatigue / tiredness / exhaustion
Never feel rested / restored
Cannot predict when have more energy / feel better and when I need rest
If don’t get rest when I need it, then crash
If over-exert myself, especially physically, crash hard
Crash = feel completely depleted physically and mentally, unable to do much at all
Food intolerance/allergies (when eat sugar, dairy, wheat)
Sugar – fatigued, increased brain fog
Dairy – feel sluggish, increased brain fog
Wheat – increased brain fog
Chemical sensitivities (fragrances, chemicals)
Need to eat every 2-4 hours, or I crash
Unable to metabolize alcohol (don’t drink it)
Easily get heat exhaustion, unable to deal with heat very well
Poor sleep, often difficult to fall and stay asleep. Exhausted but not sleepy.
Dizzy, lightheaded (after Lyme)
Brain fog / weakened executive functions
Experience of “cotton” in the head
Unable to process multitude of sensory input / uncomfortable driving
Sound sensitivity (overwhelmed by sounds / noise, several people talking etc., irritable)
Poor decision-making / poor decisions (know what I would do if felt better, but unable to do it)
Difficult to create / follow through on plans
Difficult to read anything longer than 1-3 paragraphs
Emotional instability / irritability / fears
Caught in regrets/fears when fatigued
Weaknesses/tendencies in me are amplified (things I could override when had more energy)
Here is the clinic in Poland I have gone to:
Centrum Medyczne sw. Lukasza (St. Luke Medical Centre)
And my herbalist in Oregon:
Karta Purk Singh Khalsa
Update February 10
I did my second hyperthermia treatment on my last day in Poland, and felt very sick for a week afterwards and still feel far more sick than before. This may be because the heat killed off things (Lyme etc.) in me which have been releasing toxins into my systems. It may also be a reaction to the heat. I typically don’t do well in the heat, and have had heat exhaustion several times. When I look back, I also see that the Lyme
When I look back, I also see that the Lyme symptoms mostly went away after several weeks of antibiotics last summer and fall, but then gradually returned after that. Now, I have the numbness in arms, legs, face and tongue again, along with strong headaches, strong shoulder stiffness, and much increased fatigue and brain fog. I am a little frustrated that my doctor didn’t take this seriously when I talked with him, although it seems he is catching on due to the blood test results.
I also see a few things I would have liked to do differently: (a) Schedule a shorter visit. (b) Schedule more appointments in advance. (And ask the doctor what he has planned before coming so I would be able to schedule it in advance.) (c) Be more assertive in talking with the doctor and make sure he takes what’s important to me seriously. (I did tell him the indications of active Lyme but didn’t emphasize my interpretation or how important it is for me, so it ended up not being addressed when I was there. Now, after the blood test results, he is taking it seriously.)
Update February 14
Here is the prescription from the doctor based on blood test results:
Tetracycline 250mg 2×2/day [Antibiotic often used for Lyme. Doxycylcine is a type of tetracycline. Can cause light-sensitive skin. Note: Take with a light meal and not with calcium.]
Metronidazole 500mg 2×1 w. food (only Saturday and Sunday) [Flagyl. Antiobiotic, antiparasitic.]
Plaquenil 200mg 2×1 w. food [Hydroxychloroquine. Antiparasitic, helps with rheumatism.]
Flukonazole 100mg 1/day [Antifungal.]
Update February 17
I have ordered Takuna for help with mycoplasma and Lyme. Seems that a multi-faceted approach is the best. I am currently using a combination of diet, western medicine, herbal medicine, along with inquiry, therapeutic tremoring etc.
From the description, it seems that Takuna has anti-viral and anti-microbial properties. Taken every hour, it’s supposed to resolve flu. It may also work against Epstein-Barr?
Update February 19
Tests from a hospital in Norway (Ahus) shows I don’t have Sjøgren’s disease which is a relief. Both the doctor and the hospital and my doctor in Poland agree. (Earlier tests suggested I may have it.)
I am still waiting for results from co-infection and heavy metal tests. I think there may be possible co-infections, although my doctor thinks it’s less likely. Seems I may have moderate to low amounts of heavy metals in my body, considering I had some reactions to an i.v. meant to flush them out.
My relatively strong reaction to the second hypethermia treatment (39.6 degrees) may have been a reaction to the Lyme die-off following the treatment. My symptoms intensified for more than two weeks, and I felt generally unwell and experienced strong discomfort in my body.
I’ll try some essential oils in addition to the rest. Mainly Young Living Thieves and Immupower, in addition to cloves, cinnamon, and perhaps a few more. I found a website with simple and clear instructions which seem to align with what I see from other sources.
My main focus remains Lyme, Epstein-Barr (EBV), and the two pneumonia infections. And, of course, to strengthen my system as much as possible, and support my immune system.
Update February 22
I started with the Takuna two days ago, 10-15 drops two to three times a day. After the first evening and morning of taking it, I felt quite sick with the typical symptoms: increased fatigue, brain fog, dizziness, light-headedness, nausea, and feeling generally sick and unwell. This cleared up but returned the morning after when I took 30 drops as an experiment. I assume this means it works to some extent, and the reaction may be from the die-off of various little critters (microbes, viruses?, parasites?).
Update February 29
A friend at the Breema Center says her chiropractor treats her Lyme infection using bee-sting therapy. It’s just what it sounds like….! I’ll look into it.
I received my first Vortex Healing session on the 25th and I was very impressed. I’ll write more about it in another post but the highlights were (a) repairing a broken divine line at the second chakra (which I think happened early in the recent CFS / PTSD phase, maybe 6-7 years ago), (b) repatterning and working with the gut brain, (c) acupuncture emulation. When I woke up the morning after, it felt like I had my old (healthy) belly back! I also had more energy, and felt much better and more stable in general.