I am new to this blog and also quite new to this disease (unfortunately). I had an infection last December from an insect bite in Asia, which lead to treatment for presumed lymes disease due to quite heavy neurological symptoms and response I had to doxycycline.
Blood results were not straight forward, but it has been decided to treat due to the severity of the neurological symptoms. I had one month of IV Rocephine, followed by 3 weeks of iv Aciclovir (due to high level of viruses in my blood , HSV, VZV, HHV6, EBV, etc), tough they could not determine which one was active or not (again, blood results were quite murky). This was followed by one month of minocycline and ciprofloxacine, which has ameliorated my symptoms (albeit mystery infection still there), unfortunately, this antibiotic treatment was followed by a huge bout of heavy fatigue.
Could barely move, let alone get out of bed. Luckily for me, I found treatment from a naturopath who specialises on CFS and EBV pretty much the same week and he ran various test and put me straight on an iv regimen with high doses of vitamins etc, plus oral regimen inbetween ivs (2x week)
My lab results showed low NK killer cells, low NK cell activity, low CD 57 (41), reduced ATP, reduced intracellular glutathione in my immune cells, reduced oxidative burst, nitrostative stress with peroxinitrite (but acceptable citrulin and MMA), neurotransmitter imbalances (increased Adrenaline, increased Dopamine, increased GABA, increased Glutamate, increased DHEA and reduced cortisol profile).
Huge gut dysbiosis. No food intolerance so far. Thyroid goes into hypothyroidism and back, positive Anti-Tg Ab.
Metal toxicity test after provocation with EDTA and DMSA revealed high levels of aluminium, plumb, cadmium and only low levels of mercury.
As far as viral load is concerned, an lymphocyte transformation test (LTT) revealed high level of EBV, followed by HHV6, HSV, VZV. Coxacie antibodies positive on IgG, nothing on IgM. Bacterial load on LTT is staph/strep (highest of all exposures). IgG for Ehrlichia and Bartonella positive, no IgM, Lyme negative on elisa, blot or LTT. Sent blood to Igenex for PcR.
So far my supplementation regimen consists of the following:
IV 2x week, including 7,5g Vitamine C, 3000ng Hydroxycolbalamine, B vitamine complexe, foloc acid, 600mg Glutathion, Inzolene, 300mg Alpha Liponic Acid, Taurine 1g, L-Lysine 2g
Orally, I take daily 800mg of magnesium, 600g of zink, 300ng of selenium, Omega 3-6-9 acid, Vitamin B 100 complex (including 400ng of folic acid), CQ10, Vit A, E, D, glutamine, NAC, glycine, n-acetlylglutathione, l-lysine with beta glucane and other herbal supplements (cats claw, artemisinine, etc., curcuma complex with 900ng of molybdaenum). Additional Vit B5 and cytozyme for adrenal support. 5-HTP supplements for serotonine
Ater approx two months of treatment, I am feeling generally better, the glutathione and alpha liponic acid are helping me a lot to detox, moving around and even biking for a few miles. Still feel the tiredness though and brain fog....I have a few good days, followed by a few bad days and so on. Symptoms of initial infection still there though.
Now my questions: Since I started on the methylation protocol, my hair is falling out like crazy. My gut feel is that it has something to do with ammonia and sulphites and probably a disturbed CBS gene. Recent blood results showed the following:
No more peroxonitrite, huge levels of B12, but MMA higher then previously. This would mean a methyliation block I assume?
Strong increased levels of glutamate 432nmol/g (ref 117-262). This is mainly derived from high glutamine levels. 414nmol/g. I read somewhere that ammonia is converted to glutamine, by way of the glutamine synthetase pathways.
Despite high levels of molybdenum supplement (900nmol/g), I still have a deficiency in blood (0,6ng/l (ref 1,0ng/l-10,0ng/l).
Vitamin B6 in blood is within the reference range
MCV is elevated 98fl/nl (ref 80-96). Does that mean I have a folic acid deficiency, or do I need to use the methylfolate insead of the folic acid? Blood levels for folic acid were within range (23,7ng/ml) ref is over 5.3
Borderline positive for HPU
Other notable results: homocysteine in plasma level is mid-range 5,1 nmol/l (ref <10), low erythrocytes (below range), low vit K. TSH at 1,98.
Before the end of last year, I was healthy. I am 34 years old, live now alcohol, smoke, coffeine, sugar free. Try to eat a balanced diet with no gluten at the moment. Meat roughly 4 times per week (lean chicken or lean steak), cooked vegetable, potatoes, rice.
I have now ordered the HH genetic test, to see where I might have any gene methyliation problems and am also considering the NutraEval test. Aminoacid in blood test in on its way and results should be here in a week, but I am keen to stop the hair loss urgently.
Any ideas? Thanks.
PS, does anybody know a practitioner in Germany or Switzerland who works with Genova Diagnostics? The don't want to send me a test kit, unless I am going via a practitioner who is registered with them.
Blood results were not straight forward, but it has been decided to treat due to the severity of the neurological symptoms. I had one month of IV Rocephine, followed by 3 weeks of iv Aciclovir (due to high level of viruses in my blood , HSV, VZV, HHV6, EBV, etc), tough they could not determine which one was active or not (again, blood results were quite murky). This was followed by one month of minocycline and ciprofloxacine, which has ameliorated my symptoms (albeit mystery infection still there), unfortunately, this antibiotic treatment was followed by a huge bout of heavy fatigue.
Could barely move, let alone get out of bed. Luckily for me, I found treatment from a naturopath who specialises on CFS and EBV pretty much the same week and he ran various test and put me straight on an iv regimen with high doses of vitamins etc, plus oral regimen inbetween ivs (2x week)
My lab results showed low NK killer cells, low NK cell activity, low CD 57 (41), reduced ATP, reduced intracellular glutathione in my immune cells, reduced oxidative burst, nitrostative stress with peroxinitrite (but acceptable citrulin and MMA), neurotransmitter imbalances (increased Adrenaline, increased Dopamine, increased GABA, increased Glutamate, increased DHEA and reduced cortisol profile).
Huge gut dysbiosis. No food intolerance so far. Thyroid goes into hypothyroidism and back, positive Anti-Tg Ab.
Metal toxicity test after provocation with EDTA and DMSA revealed high levels of aluminium, plumb, cadmium and only low levels of mercury.
As far as viral load is concerned, an lymphocyte transformation test (LTT) revealed high level of EBV, followed by HHV6, HSV, VZV. Coxacie antibodies positive on IgG, nothing on IgM. Bacterial load on LTT is staph/strep (highest of all exposures). IgG for Ehrlichia and Bartonella positive, no IgM, Lyme negative on elisa, blot or LTT. Sent blood to Igenex for PcR.
So far my supplementation regimen consists of the following:
IV 2x week, including 7,5g Vitamine C, 3000ng Hydroxycolbalamine, B vitamine complexe, foloc acid, 600mg Glutathion, Inzolene, 300mg Alpha Liponic Acid, Taurine 1g, L-Lysine 2g
Orally, I take daily 800mg of magnesium, 600g of zink, 300ng of selenium, Omega 3-6-9 acid, Vitamin B 100 complex (including 400ng of folic acid), CQ10, Vit A, E, D, glutamine, NAC, glycine, n-acetlylglutathione, l-lysine with beta glucane and other herbal supplements (cats claw, artemisinine, etc., curcuma complex with 900ng of molybdaenum). Additional Vit B5 and cytozyme for adrenal support. 5-HTP supplements for serotonine
Ater approx two months of treatment, I am feeling generally better, the glutathione and alpha liponic acid are helping me a lot to detox, moving around and even biking for a few miles. Still feel the tiredness though and brain fog....I have a few good days, followed by a few bad days and so on. Symptoms of initial infection still there though.
Now my questions: Since I started on the methylation protocol, my hair is falling out like crazy. My gut feel is that it has something to do with ammonia and sulphites and probably a disturbed CBS gene. Recent blood results showed the following:
No more peroxonitrite, huge levels of B12, but MMA higher then previously. This would mean a methyliation block I assume?
Strong increased levels of glutamate 432nmol/g (ref 117-262). This is mainly derived from high glutamine levels. 414nmol/g. I read somewhere that ammonia is converted to glutamine, by way of the glutamine synthetase pathways.
Despite high levels of molybdenum supplement (900nmol/g), I still have a deficiency in blood (0,6ng/l (ref 1,0ng/l-10,0ng/l).
Vitamin B6 in blood is within the reference range
MCV is elevated 98fl/nl (ref 80-96). Does that mean I have a folic acid deficiency, or do I need to use the methylfolate insead of the folic acid? Blood levels for folic acid were within range (23,7ng/ml) ref is over 5.3
Borderline positive for HPU
Other notable results: homocysteine in plasma level is mid-range 5,1 nmol/l (ref <10), low erythrocytes (below range), low vit K. TSH at 1,98.
Before the end of last year, I was healthy. I am 34 years old, live now alcohol, smoke, coffeine, sugar free. Try to eat a balanced diet with no gluten at the moment. Meat roughly 4 times per week (lean chicken or lean steak), cooked vegetable, potatoes, rice.
I have now ordered the HH genetic test, to see where I might have any gene methyliation problems and am also considering the NutraEval test. Aminoacid in blood test in on its way and results should be here in a week, but I am keen to stop the hair loss urgently.
Any ideas? Thanks.
PS, does anybody know a practitioner in Germany or Switzerland who works with Genova Diagnostics? The don't want to send me a test kit, unless I am going via a practitioner who is registered with them.