SUMMARY OF MY CASE
My name is Carlos Gonzalez and I live and work in The Netherlands since November 1.999.
I started to feel not well in October 2004, when I experienced pain in my wrist. The neurologist in Amsterdam (Dr. Stenvers) diagnosed me with RSI (Repetitive Strain Injury). He explained to me that this pain is caused by computer overuse and stress is a factor that worsens the symptoms. In order to control the symptoms I should reduce the number of hours and follow some exercise program plus physiotherapy.
My RSI complains did not improved as I had to face a difficult period of stress at work, and I searched for second opinions in Spain.
Dr. Verduras diagnosed fibromialgia and prescribed Neubrofen 600Mg and a Muscular Relaxant. I saw no improvement from his treatment, and I did not met the 11 points of fibromialgia, therefore I think I was misdiagnosed.
I went to see Dr. Domingo, and She diagnosed Chronic Neuropathic Pain and prescribed Gabapentine from 300Mg to 1.800Mg during 3 months. The 4th month She adds Amitriptiline to my medication, which I only take for 20 days, and I decide to stop the whole medication because of bad side effects. It was my mistake to do it in a sudden way, because I was supposed to do it gradually.
It was right after this episode, in September 2.005, that I start to feel very sick with extreme fatigue, dizziness, muscle pain, light fever, soar throat, high levels of anxiety, and a panic attack. I was not aware that I was suffering an infectious mononucleosis.
I was persuaded my the Arbo Doctor from the Bank to go to Spain to seek medical diagnostic and treatment. I went to a medical center to do a thorough study. In this medical center I saw every kind of specialist, and also they did all kind of test: Blood test, X-rays, Cervical Resonance, eco etc. What I did not know until then is that I had viruses attacking me and altering all my defenses, increasing dramatically my GOP-53,GPT-61 and cholesterol levels LDL-183. I had an active Epstein Barr Virus (IgM 33>20 IgG 560>20), and very high titers in the IgG of Cytomegalovirus 490 and HHV6 1/320, slight spleen inflammation, and low count of thrombocytes, which all pointed to an infectious mononucleosis, which normally do not last more than 12 weeks.
Commonly, when someone contracts an acute Epstein-Barr virus infection, their doctor says they have mononucleosis (mono). Acute mono causes swelling of the lymph glands, sore throat, sometimes swollen liver and extreme lassitude or fatigue; the patient is usually very ill. Most physicians recognize acute mono readily.
Doctors used to think that mono was just something teenagers contracted. In fact, mono earned the nickname the “kissing disease” because doctors believed teenagers passed the virus back and forth by kissing each other. The symptoms of patients suffering a reactivation phenomenon are usually not as severe. They don’t have the full-blown disease, yet they are not healthy. If they get more rest and take better care of themselves, their immune system becomes stronger and their symptoms improve somewhat. Unfortunately, if they ignore their body’s needs and push themselves too hard, their immune system slows down a little bit more, the virus is able to reproduce more, and their symptoms become worse. However some people with ME/CFS undergo the same viral reactivation scenario as people with acute mono. They endure swollen glands, sore throat, tenderness of the liver or spleen and severe fatigue.
Also, sometimes people with Chronic Fatigue have several of the laboratory changes associated with mononucleosis; for example, positive EBV/CMV titers and a lowering of the white blood cell count.
Because my symptoms were particularly suspicious, from Madrid they directed me to an internist in Barcelona Ana Garcia Quintana specialized in CFS (Chronic Fatigue Syndrome). After exploring me, and checking the test I run in Madrid, She told me that I definitely presented the symptoms of CFS, but there were strong reasons to hold the diagnostic, because I had an infectious mononucleosis still active, and I was in a window period of less than 6 months with extreme fatigue, and other illnesses needed to be ruled out. She also pointed I did have cysts of giardias in my intestines, bacterial entamoebe coli and blastocyste hominis and kidney stones as seen in the lab test and the eco.
Dr. Garcia Quintana performed the 26th of January 2.006 the biological marker on 2-Ä synthetase/RNaseL Antiviral pathway test in Barcelona to confirm her diagnosis for CFS. The lab test results came out positive and finally in February 2.006, I was diagnosed with Chronic Fatigue Syndrome after 6 months of extreme fatigue together with additional symptoms such as myalgia, joint pain, numbness, diarrhea, light fever, cognitive impairment, migraines, low respiration, general discomfort post exercise that extends more than 24 hours, non restorative sleep... These continue to be my symptoms currently with relapses and remissions.
This diagnosis has been supported by five specialist so far: Dr. Garcia Quintana, Pr. Dr. De Meirleir, Dr. Fernandez Sola and Dr. Kurk, Dr Rodriguez de Rivera. Many other test were performed to rule out other diseases such as cancer, depression, lyme, etc…
Dr. De Meirleir recently prescribed a treatment that overlaps at some extent with the one I was taking from Dr. Quintana, but adds new things such as antiviral and anti-inflammatory medications. Dr. Quintana supported his view and I add it to my treatment (see below).
As a result of my sickness, the length of the symptoms, and the hostile work environment, I experienced anxiety, which I treated through cognitive therapy in Madrid from January to April 2006, with psychologist (Javier Rodriguez de Rivera), who ruled out the depression, and agreed with the explanation of the internist for CFS.
There was definitely a before and after in my health and symptoms since September 2005 when I got the infectious mononucleosis, I never recovered from that and it is since then that I feel sick and tired as a default.
For people who are genetically predisposed to CFS, a major stressful event is all that it takes to set off the illness, and interferon could be that stressful event, an Epstein Barr infection could have also been the trigger, a major stressful situation at work could have started the whole immune activation...
If some outside agent such as a viral infection comes along during a period of high stress, the system may overreact or even spiral permanently out of whack. This may have very well been my case, because after being exposed to high stress at work, I contracted a viral infection by Epstein Barr, and I haven't recovered since then. In this respect this disease started at work.
That being said, we do know that there are a lot of immune system activation problems in patients with CFS, but we do not necessarily know what the cause is, although the research done points to viral infections as the main responsible.
What defines CFS are the symptoms, the most obvious one is fatigue. Basically you feel jet-lagged most of the time. Is like having a hangover without the fun of having gone out the previous night. There are other symptoms like nausea, joint pain, muscle pain, gases, and diarrhea... There's no known cure. Is like living in someone else body, that from now on is going to be yours. I cannot always think as clearly, and basically I have to relearn how to live life with my new body. It is a little bit like having mononucleosis that never goes. You feel very fatigued, very drained. And no matter how much you sleep, you're still going to feel tired.
A good example to understand how I feel is the following: Imaging that you are wealthy and own a credit card, you could spend a lot normally, and even if you run out of money for the day, you count on your credit card, and your balance will be guaranteed by your reserves. Now imagine that you are very poor, and you only have a debit card, that means that you can only spend what you have, and what you have is very little. Now substitute the word money for energy, and then you will understand your limitations, and if you exceed them they will put you in "jail", bedridden and very sick for a few days...
Since October 2005, my blood also shows typical abnormalities that help to mark this illness, such as low sedimentation rate, atypical high lymphocyte count and high cholesterol ratio. I mark positive for Tandem Romberg, I also show an active Epstein Barr virus, IgG 490 Normal <20 IgM 33 Normal <20.
At the time of the infection it could be observed a past mycoplasma pneumonia infection, Herpes Zoster, Herpes Simplex and high IgG titers of Cytomegalovirus and HHV6. Nevertheless, in recent lab test I did on November 2006 a PCR on HHV6 came negative, but on the other hand they obtained the following findings:
I do have various viruses in activity at the moment:
A) Bartonella henselae AL IgG 1/128. In the opinion of the doctor, Bartonella is a recent infection because of the elevated IgG. I remember that I went to my doctor a month ago because I suffered pleurisies with a strong chest pain, now I make the connection with this bartonella infection, because the pleurisies can be one of the symptoms after the infection. Basically my immune system is so low that I catch all kind of opportunistic infections.
Other bacteria observed in the intestines at the IgM level such as Hafnia alvei/M, Pseudomonas aeruginosa/M, Morganella morganii/M, Pseudomonas putida/M, Citrobacter koseri/M, Klebsiella pneumo/M, Hafnia alvei/A, Pseudomonas aeruginosa/A, Morganella morganii/A, Pseudomonas putida/A, Citrobacter koseri/A, Klebsiella pneumo/A...
Besides muscle tissue was found in my heces, which shows clear problems with undigested proteins.
B) Epstein Barr Virus is still active after one year of the infection; this is a fact after performing a PCR (Polymerase Chain Reaction) which is a DNA detection of this virus in the blood. This can't be put into question, like my arbo doctor or UWV used to suggest that it was an old infection. This shows that this virus actually reactivates and is the main responsible for my dizziness and fatigue. The reason for these viral reactivations is my impaired immune system, as it will be demonstrated by the count of my NK cells.
C) I also show lactose intolerance. Lactose intolerance is the inability to digest lactose, a type of sugar found in milk and other dairy products. It is caused by a deficiency of the enzyme lactase. Lactose intolerance occurs when the small intestine does not produce enough of the enzyme lactase. Lactase deficiency may also occur as a result of intestinal diseases such as celiac sprue and gastroenteritis. Temporary lactase deficiency can result from viral and bacterial enteritis, which could very well be my case.
D) My RNASe L Activity and Quantity remains more less at the same level than 9 months ago. Nevertheless my elastases have come down due to the antibiotics that I took during 4 months, I probably need to take more in the future.
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
Elastase 654 in January 2006 vs 358 in October 2006 vs Reference Value <150
The deviation of RNASe from the Reference Value varies. In the Quantity (1 vs 0,5) and the Activity (187 vs 50). Basically RNASe Quantity is the double than the reference value, and therefore from the 187 counted of the RNASe Activity, 100 is the real deviation, and the extra 87 counted is explained by the active Epstein Barr viral infection. This is relevant in the sense that there is treatment for my case, by helping my immune system to get rid of the virus, and keeping on reducing my elastases, we can try to normalize my RNASe so that it can work properly against viral infections.
E) Natural Killer Cells show a totally depressed immune system in my case. Natural killer cell is a cell that can react against and destroy another cell without prior sensitization to it. Natural killer (NK) cells are part of our first line of defense against cancer cells and virus-infected cells.
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)
NOSL Nitric Oxide Serum Level 27,7 (abnormally high vs Normal Range <12)
Basically, the interpretation of these abnormally high numbers is the following.
RNASE is located at the interferon level and is responsible for acting as the main antiviral response of the human body. When RNASE is abnormally high, means that there is a rupture in the molecule, and the immune system cannot work properly.
The high elastase is responsible for this anomaly in the RNASE, and that is why antibiotics that have an inhibitor role of the elastases are recommended, in order to normalize the RNASE.
The PKR is also affected, and this one is responsible for the functioning of the programmed intracellular dead, which is more less the cleaning of corrupted or infected cells. This malfunction may lead to an intracellular inflammation.
The RNASE test is the most specific immune system abnormality that has been discovered in ME/ICD-CFS. There is an increased activity and dysfunction of the 2-5A RNase-L antiviral pathway in lymphocytes. The deregulation of the RNase-L pathway strongly supports the hypothesis that viral infection plays a role in the pathogenesis of the illness. Between 80 - 94.7% of M.E. patients have evidence of an up-regulated 2-5A antiviral pathway; are so positive for this marker. The degree of elevation of 37 kDa Rnase L has also been shown to correlate with symptom severity. This test is as yet not widely available but looks like being one of the most useful tests in helping to diagnose ME/ICD-CFS in the future. (See "Red Labs" for testing information, and see the links:” diagnostic marker”,” markers" and "RNASA & PKR" to know more on this subject)
Dr Quintana originally prescribed the treatment that I follow, but recently She supported some additions of Dr. De Meirleir that I will start in December 2006 as well:
Diet Low in Lactose (Since December 2006)
Drink 3 litter of water
a) 2redoxon tablets a day (Vitamin-C) (Since December 2005)
b) Recuperat-ion (Sodium 740mg + Potassium 200mg + Calcium 15mg + Magnesium 15mg) (Since December 2005)
c) 2Flumicil 600mg (Acetylcisteine) From December 2005 until January 2007 (Not anymore, because I started taking a similar supplement: L- Glutathione n)
d) Acidophilus NAS super strain +B. bifidum Malyoth super strain L bulgaricus LB-51 super strain (Since September 2006)
e) Saccharomyces boulardi 56,5mg (2 pills a day) (Since May 2006)
f) Vitamin B12 injections weekly for 5 week cycles on and off (From July 2006 to December 2006)
g) Denterococo (Since August 2006)
h) Tranxilium 10mg (when required to reduce anxiety and sleep well, once or twice a month)
i) Zithromax (Azytromicine) Mondays, Wednesdays and Fridays with a stomach protector consistent of probiotics during 4 months (Since May until August 2006). They did reduce my elastases from 654 to 358.
j) Gabbroral 250mg (In Spain is called Humatin, generic is paromomycin) is an intestinal antibiotic for chronic giardias and amebiosis, which I had in the past, but i do not have now, at least they do not show up in the lab test.(Since January 2007 til March 2007 - 4 pills a day, the first 4 days of the month only)
k) Zelitrex 500mg is an antiviral for herpes virus, i guess that is meant for my Epstein barr that came positive. (14 days during December 2006)
l) VSL-3 is a probiotic (Since January 2007) ...for a few months, I will skip acidophilus d)
m) Hydrozyme(tm) is an all-natural non-toxic enzyme product that safely digests most forms of proteins, dead roots and other organic matter (Since January 2007)
n) L- Glutathione 500mg is a biologically active sulfur amino acid tripetide compound containing three amino acids: L- Cysteine, L- Glutamic Acid, and Glycine (Since January 2007) ...for a few months
(I will skip the Acetylcisteine (c) I was taking, because it becomes Glutathione after digestion, so I will stick to the L-Glutathione only)
o) COLITOFALK 500MG TABLETS (in Netherlands is called Salofalk, in Spain Claversal) is used to treat inflammatory bowel disease, such as ulcerative colitis or Crohn disease. It works inside the bowel by helping to reduce the inflammation and other symptoms of the disease that take place in the thin intestine, due to bacteria overgrowth, and this can't be seen with a colonoscopy.(Since January 2007) ...for a few months
p) Vitamin B12 sublingual 10000mcg a day (Since January 2007) ...for a few months
q) Additionally for recurrent infections I have used Flagyl to treat cysts of giardias twice in the past and fluconazol to treat fungi in my penis twice as well.
The antibiotics were not prescribed as such in my case, they are used to reduce the intracellular inflammation given by my RNASE, Elastase and PKR, and indeed my symptoms evolved favorably, and my elastase came down from 654 to 358 because of the antibiotics intake.
The treatment with certain antibiotics essentially of the group of the beta-lactámicos can be useful in cases of increase of elastasas, because indeed they have an inhibiting role on them.
A very frustrating thing of this illness is the combination of remission of symptoms periods followed by relapsing periods where the symptoms come back in a stronger way. It is very important not to overpass oneself limits, because normally when there is a remission of the symptoms, we tend to overdo physical and mental efforts, which leads us into a worse relapsing period with stronger symptoms. Once we fall into the relapsing period, we could expect to see ourselves in bed for a whole week.
Basically, what doctors are doing is treating my symptoms at the moment, because is the only thing that is possible to do, given that there is no cure currently for this illness. The best treatment is to rest and practice low aerobic exercise. The main triggers for the symptoms are stress, physical effort and mental effort. Her words to me were: "You have to be specially careful, precisely in your "good days", because is then when patients tend to overdo things"
The Following is a Summary of the Medical test performed in the last 3 years:
BLOOD TEST (DECEMBER 2006)
In the last Lab test of December 2006, besides a positive PCR on EBV it was found a high IgG of Bartonella Henselae 1/128 (showing a recent infection) Low Number of NKC1 NKC2 and High Levels of Nitric Oxide in Serum. Also Elastase levels were high and RNASe L was abnormally high showing a current infection.
BLOOD TEST OCTOBER-NOVEMBER-DECEMBER-MARCH-JUNE (2005-2006)
Acute Epstein Barr Virus Infection IgM 23,7(Ref >20) POSITIVE IgG 489(Ref >20) (INFECTIOUS MONONUCLEOSIS)
High Levels of GOP-53 (Ref 5-40), GPT-61 (Ref 5-45) and cholesterol LDL-183 (Ref 120-160)
Elevated IgG of HHV6 IgG 1/320, CMV IgG 490 and Mycoplasma Pneumonia IgG 37 signaling recent infection or reactivation.
Abnormally low level of thrombocytes 122 (Ref <150)
Abnormally high level of % linfocytes 48 (Ref 20-45)
High Levels of Bilirrubine 31 (Ref 1-17)
In the following months additional blood test were performed, and everything gradually normalized except for Bilirrubine and EBV. By Definition shows an Acute infection when IgM is higher than 20, and a past infection when only IgG is higher than 20. These are the registered results so far:
October 05........................ IgM 23,70 IgG 489
November 05................... IgM 22,90 IgG 438
December 05................... IgM 33,30 IgG 493
March 7th 06.................... IgM 32,00 IgG 560
March 24th 06.................... IgM 4,00 IgG 26 for the first time negative after going to a naturist clinic with an extreme detoxify program of fruits and vegetables
June 20th 06 ………………..IgM 32,00 IgG 490 (Again reactivated)
December 06 ………………PCR EBV POSITIVE
POLYSOMNOGRAPHY STUDY (2006)
Summary: little snoring patient with normally developed sleep pattern, but with somewhat low oxygen saturation (gem O2=57,4%) AHI=1,1
Conclusion: No indications for obstructive sleep apnea syndrome, normal hypnogram.
A) I do present 7 episodes of Apnea+Hypopnea, this means that every hour my respiration slows down almost to the point of not breathing, but immediately afterwards I start to breath again.
B) I also showed 33 Oxygen Desaturation Events. The total time analyzed was 477 minutes, in which the sleep period was 443 minutes with a Wake up during Sleep time of 68 minutes. The sleep efficiency was 85% with 2 awakenings.
Average Oxygen Saturation: 87.4% Saturation <90% 60.7% of the time 217 minutes
Lowest Oxygen Saturation: 54% Saturation <80% 6.9% of the time 25 minutes
Average Desaturation 6.7% Saturation <70% 3.3% of the time 12 minutes
Average Oxygen Saturation during wake: 89.7%
Average Oxygen Saturation during REM: 81.9%
Average Oxygen Saturation during NREM: 88.7%
C) The architecture of the sleep was normal: S1-34 minutes, S2-36 minutes, S3 or S4-47 minutes, and REM 79 minutes.
(It is tipical in CFS patients a greater % spent in Stage 3 and REM phase)
D) From the 5036 number of breaths detected 846 (16.8%) were below threshold.
Under the opinion of the specialist this results do not show a serious sleep apnea problem to treat, as it would be the case if it was Obstructive apnea. In his opinion my fatigue does not come from my sleep quality, but from the reasons my internist indicated in Spain: Post Viral Fatigue Syndrome.
EFFORT CAPACITY (FEBRUARY 2006)
Capacity of effort realized ́ a progressive test in cicloergómetro up to the maximum. The cardiovascular function was monitored ́ and respiration during the realization of the test. Is realized ́ the analysis of the production of lactate in the immediate post-effort. − observing values slightly below with regard to the expected theóric values, given his specifics characteristics (sex, age...) when reaching the maximum aerobic power, evaluated by the maximum consumption of oxygen realized during the test. An irregular adaptation was observed ́ to the successive imposed charges, observing a diminution of the consumption in proportion to the load realized in the high charges. - The working capacity evaluated by means of the developed work, was slightly low with regard to the theoric value given his characteristics. - The taquicardia was proportional with regard to the realized load
ABDOMINAL ECO (NOVEMBER 2005) CONCLUSION: ESPLENOMEGALIA (spleen inflammation) and Kidney Stone of 4 MM.
CERVICAL RESONANCE (NOVEMBER 2005) Beginning Degenerative Alteration in the Intravertebral discs C4-C5 and C6-C7, with diminishing intensity of signal in the sequence harnessed in T2, with a discreet degree of global protrusion of the disc ring in both levels, without alteration in the configuration of the neural channel.
LATERAL RX TORAX (NOVEMBER 2005) there are not appraised Pleuropulmonar alterations of interest. Cardio Silhouette of normal size and morphology and visible regional skeleton without alterations.
COLONOSCOPY (JANUARY 2006) Everything Normal, only a few INTERNAL HEMORROIDS were found.
COPROCULTIVE: EGGS and PARASITES IN LEES (JANUARY - 2006) Detect Cysts of GIARDIA in the second sample of three.
UROLOGIST EXPLORATION OF MY RIGHT TESTICULE (AUGUST 2005) is appraised a cyst in my right testicle, but it seems to be benign and made of fat. Besides is not right in the testicule but in a membrane adhered which is confirmed with an eco.
ELECTROMIOGRAMA (2004) is appraised an anomaly in the left annular finger, where apparently a conductive nerve does not exist, since two nerves go to the same finger. This fact does not seem to have relevance for the opinion of the neurologist and his diagnostic is RSI (Repetitive Strain Injury)