Chronic Fatigue Syndrome, has been a lousy name for this illness. It has been inappropriately called like this, and that leads to stigmatization and lack of awareness among the medical opinion and undiagnosed patients.
I just came back from seeing my Doctor in Brussels (Kenny de Meirleir), and he told me that this illness should have been called cancer, aids, chron, or something like that, because indeed it shares a lo of similarities, like a deficiency of Natural Cell Killers necessary to fight viruses, damaged lining if the intestine that results in lack of absorption and inflammation, and an hyperactive immune system.
Luckily for me, the antiviral that I took in January this year have been able to put down my Epstein Barr Virus, which means my immune system is stronger as well. In December 2007 the PCR on EBV came positive, as it did always since September 2005 showing an acute infection by EBV. Nevertheless my Doctor prescribed after December 14 days under Zelitrex. This is a prodrug from acyclovir called Valaciclovir, which inhibits herpes DNA replication. This drug is a competitive inhibitor and when it gets incorporated into DNA, it acts as a chain terminator. This is probably the reason why the PCR on EBV performed 45 days after taking the drug came out negative. In April the test still showed a negative IgM, and a low IgG which shows no recent infection.
The fact that I was not suffering from EBV anymore since April 2007, as well as the fact that I have been eating without gluten and lactose for several months in order to avoid allergens, have allowed me to feel much better and functional. Indeed I have started to work again full time since June 15th. I hope that everything goes fine in this respect.
I am very careful with my health nevertheless, because I am aware that the genetic problem still remains with me, and this remission phase could be hampered by so many factors.
Currently Dr. De Meirleir is prescribing Nexavir during a maximum of one year to patients, weather that works or not, is still to be seen. He claims that 3 out of 4 patients responds well to the treatment, but he also said so when prescribed be intestinal antibiotics and probiotics to reestablish my flora in my intestines. And although I feel functional, I am still not at my 100%, lets say that I feel at 70% many of my days, instead of 30% like I used to feel, this is already a great achievement.
In April 2007 I showed presence of Blastocystis Hominis in my intestines, and apparently they were resistant to the antibiotics I took Jan-March (Paromomicice-Humatin). A new stool test performed in July 2007 revealed that I also have Helicobacter Pilory and Entamoeba Histolytica. I am currently treating E. Histolytica with YODOQUINOL 650mgr and METRONIDAZOL 750mgr. Lets see if that works within a month. I recommend everybody does a TFT (Three Faeces Test) in order to check for parasites, they can explain a lot of the symptoms and they are no so easy to detect in one single stool sample.
In April 2007, they found a positive ANA test in my blood. Low titer ANAs can also be found in the serum of many healthy elderly people, but I happen to be 37 years old. All positives will be further analyzed for DNA and ENA antibodies, which in my case were negative. There was also the presence of AC Anti-Gliadina IgA, and they will take a biopsy from my intestines to check if I could be celiac, or I am simply gluten intolerant and lactose intolerant due to the presence of long-term parasites and the long term Epstein Barr Virus infection that I had for almost 2 years.
I just suggest that governments should be spending more money research for health matters like this, instead of wars and guns. There is a still long way to go in terms of research for this illness. A lot has been done, but we still do not have a biomarker, neither an appropriate treatment that works for everybody. The Rnase-L has shown to be effective to distinguish ME/CFS patients from healthy patients, but still more money should be invested to see if this RNASe-L abnormalities are present in other illness. That still has to be done, because otherwise we run the risk to put in the bag of CFS/ME everything that we do not know or can't explain. It takes more than a year to rule out all the other possibilities before diagnosing ME/CFS, and indeed everything else needs to be ruled out.
I will update this, when I know more on the biopsy that I need to do.
This is a summary of the history of the lab test performed to me in the past:
HISTORY OF LAB TEST RESULTS:
HISTORY OF PARASITES:
August 2004 Strong flatulence after following a PEP treatment in July
25/08/05 Single White Worm 2.5 cm in stool (Medication taken:mebendazol) (I do not recall this...but is in my medical file)
August 2005 Blastocystis hominus and Entamoeba Coli
October 2005 No parasites found
Jan 2006 cysts of Giardia Lambia (Medication taken Flagyl)
March 2006 cysts of Entamoeba coli
June 2006 No parasites found
Jan 2007 No parasites found
April 2007 Blastocystis Hominis*
June 2007 Blastocystis Hominis, Helicobacter Pilory, Entamoeba Histolytica.
*Presence of Blastocytis Hominis. This presence of parasites came by surprise, specially after having taken intestinal antibiotic Humatin from January to March 2007, B.Hominis is quite difficult to erradicate, I was told to try Cotrimoxazol together with Humatin, but I will wait until I get rid of E. Histolytica first. There is a lot of controversy wether B. Hominis is a pathogen or not, but what seems to be clear is that when there are too many cysts in the sample, its might be pathogen or at least points the possibility that another pathogen is present, like in my case E. Histolytica.
HISTORY OF SEROLOGY TEST
September 05- March 05
Since I started the Infectious Mononucleosis by EBV in September 2005, cholesterol LDL-183 (Ref 120-160), spleen inflammation, GPT 61 (Ref 5-45), GOT 53 (Ref 5-40), low throbocytes level 122 (Ref <150), and high IgG titers of Mycoplasma Pneumonia IgG 37, HHV6 IgG 1/320 and CMV IgG 490 have been abnormal for many months, but most of them were normalized by March 2006.
Since March 2006, the only abnormally active infection was an abnormally high level of % lymphocytes 48 (Ref 20-45), High Levels of Bilirrubine 31 (Ref 1-17) and a still positive EBV which continued to show acute infection in blood samples either by IgM or by PCR until February 2007:
October 05.......................IgM 23,70 IgG 489 (INFECTIOUS MONONUCLEOSIS)
November 05................... IgM 22,90 IgG 438
December 05................... IgM 33,30 IgG 493
March 7th 06....................IgM 32,00 IgG 560
June 20th 06 ....................gM 32,00 IgG 490
December 06 ..................PCR EBV POSITIVE
February 2007.................PCR EBV NEGATIVE
April 2007.......................IgM NEGATIVE IgG1/160 very low, in the limit.
Augost 2007......................IgM 30 IgG 160
Other Laboratory Test performed in December 2006 in RED LABS in Belgium:
Bartonella Henselae antibody titer IgG 1/128 (this indicates recent infection, although I have not seen a cat in 2 years, which is why immune problem is suspected)
PCR for detection of EBV POSITIVE
PCR for detection of mycoplasma, HHV6, HHV7, CMV, chlamydia NEGATIVE
Melisa: Normal for Hg++/Nj++
Elastase: mildly increased
Elastase 654 in January 2006 vs 358 in October 2006 vs Reference Value <150 (Elastase came down after a 4 month antibiotic treatment with zithromax jam April 2006)
LMW RnaseL: ratio 1,0 (normal 0,5): increased enzymatic activity
RNASe Quantity 1,2 in January 2006 vs 1 in October 2006 vs Reference Value <0,5
RNASe Activity 224 in January 2006 vs 187 in October 2006 vs Reference Value <50
Natural Killer cells: low % and reduced activity
NKC1( %NK Cells in Blood) 4,2 (abnormally low vs Normal Range 9-21)
NKC2 Specific cell Lysis 15,8 (abnormally low vs Normal Range 18,4-43,8)
NKC3 Lytic Activity Index 37,6 (abnormally high vs Normal Range 10-30)
Nitric Oxide in serum: increased
NOSL Nitric Oxide Serum Level 27,7 (abnormally high vs Normal Range <12)
Lactose challenge test: Lactose intolerance (due to bacteria overgrowth probably)
Fructose challenge test: Normal
Stool test: Presence of undigested proteins. No parasites found at that time.
CURRENT SEROLOGY (IgG´s) April 2007
GOTA GRUESA NEGATIVE
MONONUCLEOSIS INFECCIOSA IN THE LIMIT IgG (1/160) IgM Negative
MYCOPLASMA PNEUMONIA POSITIVE IgG 1/512 (IgM Negative)
CMV POSITIVE (IgG 40 very low, no recent infection)
Anticuerpos Antinucleares (ANA) POSITIVE 1/80
Anticuerpos Anti-DNA 1.7 IU/mL Ref(0.0 - 15.0)
Anticuerpos Extractables (ENA) NEGATIVE
Ac. anti-tTransglutaminasa IgA NEGATIVE
Ac. Anti-Gliadina IgA POSITIVE (I will run biopsy soon in my thin intestine to rule out celiac disease)
RECENT CASUAL FINDINGS
Polyp observed through MRI in the left maxillary area close to the nose. It is supposed not to be pathogenic and precise no follow up. Is just mucus. 25% of population has it.
Papiloma observed in the throat by optical exploration by the specialist. (berruga) It is non pathogenic and precise no follow up.
Cyst observed in the right testicule. No pathogenic and precise no follow up.
STANDARD FOOD PANEL (July 2007)
FOOD stats ELISA (IgG)
Highly reactive foods:
Almond and egg whites.
Moderately reactive foods:
Blueberry, sesame seed, sugar cane
Gluten Wheat, Wheat Whole, dairy family products, egg yolk, coffee bean, banana, pineapple and oyster.
SPECIAL NOTE REGARDING BLASTOCYSTIS HOMINIS AND ITS TREATMENT
B hominis can suppress your immune system and worsen food allergies or intolerance. Some doctors think is a pathogen, some others think is a comensal, and therefore no need to be treated. What is probably sure is that its abundant presence in our flora denotes a poor immune system probably hiding another pathogen such as Entamoeba Hystolitica etc... Please do a TFT to make sure you do not have anything else. Beware that the antibiotica proposed below is quite controversial, and could damage your flora and immunity severily, and needs to be discussed with your physician.
Blastocystis hominis is a real pig of a parasite to treat. Metronidazole sometimes does the trick but there are no guarantees. Alternatively it can be tried the combination of paromomycin 20mg/kg/day with doxycycline 100 mg twice a day for 14 days.
And another alternatively is a stronger treatment proposed from an Australian website called www.badbugs.org which is the following:
The B.hominis treatment which cures 85% and more of Blasto. infections originate from a Sydney GI clinic. When the clinic began treating this parasite in 2001 they discovered just how resistant it can be to metronidazole (Flagyl), tinidazole (Tinidimax) and Septrin - all drugs which are regularly prescribed to treat this parasite. Because of this resistance problem they went on to trial a number of drug combinations over 3 years before finally settling on their current treatment (below).
Nitazoxinide 500mg 2x daily
Secnidazole 400mg 3 x daily
Furazolidone 100mg 3 x daily
all combined for 10 days
(*A cure is determined by resolution, or great reduction in symptoms combined with 3 fixed samples tested 4 weeks post-treatment)
The meds are available from www.medsmex.com (Mexican based on-line pharmacy) w/out a script. Furazolidone is listed as Furoxone and Secnidazole as Secnidal. They are also available from pharmacies inside of Mexico.
The clinic suggest the following alternatives if Furazolidone and/or Secnidazole are unavailable However Blasto. can be difficult to treat and these treatments may not be as effective as their primary.
Septrin DS (dosage standardized)
Tetracycline hydrochloride 500mg 3xdaily
Nitazoxanide 500mg twice daily
all combined for 10 days.
Iodoquinol 630 mg 3xdaily,
Humatin/Paromomycin: 500mg 3xdaily
all for 10 days.
The natural way with natural remedies suggests the following:
B hominis can suppress your immune system and worsen food allergies or intolerance. Both Berberis and Artemisia annua in combination offer an effective treatment (Tokai J Exp Clin Med, 1990; 15: 417-23), though you need to continue treatment for up to three months.
Amsterdam 8th of July, 2007