EBV test positive for ME

[Manoj Nadgouda]

@GloriaDG
Actually after dengu fever he has following symptoms

ME/CFS severity and level of activity (scale of 8 to 10)1 — SEVERE: Bedridden most of day, very rarely leave house.
1.Constant fever like feeling (although fever is not present) , bitter taste in mouth , extreme fatigue and exhaustion, rapid breathing rate , heart palpitation , increase heart beats , dizziness , lightheadedness ,thirstiness , body/ muscle pain, body seems extremly heavy, hands and feet get cold after small amount of exertion (physical or mental or talking) .

2. 85% Decline in Physical / Mental activties
can do very minimal physical , mental activities, or talking
while doing physical activities , I need to drag myself and feel extremly fatigue and exhausted like I am constantly on brake mode
If I do little bit overexertion I face post exertion malise.

3. even digesting food seems heavy task for body ,
I feel fatigue , exhaustion , heart palpitation, even during digestion as If all bodys energy is used for digestion.
gases, flatulence, bloating in gut. Hunger feeling is also reduced significantly.I need to eat semi solid easily digestible food ,one pot meal otherwise my fatigue , exhaustion and Gut problems increases tremendously.

4. need to take bed rest for 4 to 5 hrs per day and cannot stand or sit for long time also cannot talk for more than 5 to 10 mins.

Symptoms when crash occurs-
1. Feeling unsteady while walking also little diziness
2. Pressure in head and base of head as if something is flowing in head. Also fainting feeling,lightheadeness and kind of unconsciousness
3. Strong nausea feeling and bitter taste in mouth
4. Pressure behind eyes and on eyes
5. Not able to think clearly sometimes lack of coordination
6. Feeling restless and feverish malaise feeling
7. Digestion gets disturbed more (gut)
8. Not able to tolerate bright light and sound
9. Heart palpitation
10. Breathlessness

So GI digestion and metabolism is not happening at all , PEM is very high , BP is 95-105( on lower side) i do not reason after all test and scan everything getting normal I m not understanding where to go.

 

[GloriaDG]

@GloriaDG
Actually after dengu fever he has following symptoms

ME/CFS severity and level of activity (scale of 8 to 10)1 — SEVERE: Bedridden most of day, very rarely leave house.
1.Constant fever like feeling (although fever is not present) , bitter taste in mouth , extreme fatigue and exhaustion, rapid breathing rate , heart palpitation , increase heart beats , dizziness , lightheadedness ,thirstiness , body/ muscle pain, body seems extremly heavy, hands and feet get cold after small amount of exertion (physical or mental or talking) .

2. 85% Decline in Physical / Mental activties
can do very minimal physical , mental activities, or talking
while doing physical activities , I need to drag myself and feel extremly fatigue and exhausted like I am constantly on brake mode
If I do little bit overexertion I face post exertion malise.

3. even digesting food seems heavy task for body ,
I feel fatigue , exhaustion , heart palpitation, even during digestion as If all bodys energy is used for digestion.
gases, flatulence, bloating in gut. Hunger feeling is also reduced significantly.I need to eat semi solid easily digestible food ,one pot meal otherwise my fatigue , exhaustion and Gut problems increases tremendously.

4. need to take bed rest for 4 to 5 hrs per day and cannot stand or sit for long time also cannot talk for more than 5 to 10 mins.

Symptoms when crash occurs-
1. Feeling unsteady while walking also little diziness
2. Pressure in head and base of head as if something is flowing in head. Also fainting feeling,lightheadeness and kind of unconsciousness
3. Strong nausea feeling and bitter taste in mouth
4. Pressure behind eyes and on eyes
5. Not able to think clearly sometimes lack of coordination
6. Feeling restless and feverish malaise feeling
7. Digestion gets disturbed more (gut)
8. Not able to tolerate bright light and sound
9. Heart palpitation
10. Breathlessness

So GI digestion and metabolism is not happening at all , PEM is very high , BP is 95-105( on lower side) i do not reason after all test and scan everything getting normal I m not understanding where to go.

What has really helped me was taking medication to improve blood flow, in particular Stugeron. Another similar medication that is safe and can be trialled is called Pentoxifylline. They both improve red blood cell deformability and reduce blood viscosity, so that blood can flow better. Better blood flow leads to better oxygenation and delivery of nutrients throughout the body. There is also a theory that ME/CFS patients have problems with coagulation, therefore anticoagulants like heparin can help. Dengue is a virus that disrupts the coagulation process and directly attacks platelets and the integrity of blood vessels. I have a feeling that I may have a predisposition for developing problems with coagulation/blood viscosity, probably genetic. Stugeron and Pentoxifylline are safe and extremely suitable for this kind of issues, I'd definitely recommend a trial! Plus there are other sorts of mechanical disorders of intracranial pressure that can be explored if drugs don't resolve it completely. For example, I discovered I have stenosis of both my jugular veins and occlusion of one of my intracranial transverse sinuses (major draining vein inside the head). This means that my intracranial venous pressure is too high and the blood can't return easily to the heart, remaining trapped inside the head and leading to a state of cerebral hypoxia. I'm getting angioplasty to treat that and it can be diagnosed with ultrasound doppler of the neck (that looks at the jugular veins, not carotid arteries) or a brain MRV.
Here are some links to case studies of possible other conditions that can lead to ME/CFS symptoms and can be investigated:
Intracranial Hypertension and Venous Insufficiency: https://www.ncbi.nlm.nih.gov/pubmed/28735654
https://www.ncbi.nlm.nih.gov/pubmed/26623235
Cervical Stenosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5796598/
Cranio-cervical Instability / Antlanto-Axial Instability / Tethered Cord Syndrome
https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71
https://www.mechanicalbasis.org/
The relationship between ME/CFS, Intracranial Hypertention and Hypermobility Syndrome or Ehlers Danlos Syndrome
https://osf.io/qwn5h/?fbclid=IwAR0F7ROkjDjfcBJG5az5-tIzj9x8tlIolT6y1OokZFiRkpo4sC7chEglPXY
Blood flow impairment: https://www.ncbi.nlm.nih.gov/pubmed/30594919
Hypercoagulation in ME/CFS (this is just an hypothesis though, not fully verified): http://www.anapsid.org/cnd/diffdx/hypercoagulation.html

 

[Tella]

@GloriaDG
Actually after dengu fever he has following symptoms

ME/CFS severity and level of activity (scale of 8 to 10)1 — SEVERE: Bedridden most of day, very rarely leave house.
1.Constant fever like feeling (although fever is not present) , bitter taste in mouth , extreme fatigue and exhaustion, rapid breathing rate , heart palpitation , increase heart beats , dizziness , lightheadedness ,thirstiness , body/ muscle pain, body seems extremly heavy, hands and feet get cold after small amount of exertion (physical or mental or talking) .

2. 85% Decline in Physical / Mental activties
can do very minimal physical , mental activities, or talking
while doing physical activities , I need to drag myself and feel extremly fatigue and exhausted like I am constantly on brake mode
If I do little bit overexertion I face post exertion malise.

3. even digesting food seems heavy task for body ,
I feel fatigue , exhaustion , heart palpitation, even during digestion as If all bodys energy is used for digestion.
gases, flatulence, bloating in gut. Hunger feeling is also reduced significantly.I need to eat semi solid easily digestible food ,one pot meal otherwise my fatigue , exhaustion and Gut problems increases tremendously.

4. need to take bed rest for 4 to 5 hrs per day and cannot stand or sit for long time also cannot talk for more than 5 to 10 mins.

Symptoms when crash occurs-
1. Feeling unsteady while walking also little diziness
2. Pressure in head and base of head as if something is flowing in head. Also fainting feeling,lightheadeness and kind of unconsciousness
3. Strong nausea feeling and bitter taste in mouth
4. Pressure behind eyes and on eyes
5. Not able to think clearly sometimes lack of coordination
6. Feeling restless and feverish malaise feeling
7. Digestion gets disturbed more (gut)
8. Not able to tolerate bright light and sound
9. Heart palpitation
10. Breathlessness

So GI digestion and metabolism is not happening at all , PEM is very high , BP is 95-105( on lower side) i do not reason after all test and scan everything getting normal I m not understanding where to go.

How r u

 

[Manoj Nadgouda]

Condition is same , if I do even small activities there is PEM it's so much horrible I have one post describing my sitwation during crash. Where I was admitted in causality .
__ Not tried Stugeron or Pentoxifylline for RBC deformability / improper blood flow.
__ Had Scans of
1.Cervical Spine for structural cause CCI
2.Lumbnar MRI Tethered cord
(Tethered cord show finding )
Findings are s/o tethered cord with conus tip at upper border of L3.
Lipomatous slightly thick filum terminale is noted. ... But here in India neurosurgeon say that could not be causing ME conditions I,e it is not reason
3. 3D CT of head and neck
4. Venogram and angiogram
But here in India I do not find educated neurosurgeon who could diagnose structural problems as cause of ME .
COULD YOU TELL ME GOOD NEUROSURGEON who could give me online / skype consultation .
I want help FROM ME / CFS experts physicians as well who could provide me online consultation.


Most of the day I have to lie down on bed even small talk conversation for 5m give me PEM

 

[GloriaDG]

Condition is same , if I do even small activities there is PEM it's so much horrible I have one post describing my sitwation during crash. Where I was admitted in causality .
__ Not tried Stugeron or Pentoxifylline for RBC deformability / improper blood flow.
__ Had Scans of
1.Cervical Spine for structural cause CCI
2.Lumbnar MRI Tethered cord
(Tethered cord show finding )
Findings are s/o tethered cord with conus tip at upper border of L3.
Lipomatous slightly thick filum terminale is noted. ... But here in India neurosurgeon say that could not be causing ME conditions I,e it is not reason
3. 3D CT of head and neck
4. Venogram and angiogram
But here in India I do not find educated neurosurgeon who could diagnose structural problems as cause of ME .
COULD YOU TELL ME GOOD NEUROSURGEON who could give me online / skype consultation .
I want help FROM ME / CFS experts physicians as well who could provide me online consultation.


Most of the day I have to lie down on bed even small talk conversation for 5m give me PEM

There are different options, as most surgeons specialise on one of these issues at a time (for example, one specialise in CCI, one in Tethered Cord, one in vascular issues). As a general rule, Dr Paolo Bolognese in New York offers online consultations, but you need to contact their office and ask them what type of information they need. Dr Gilete in Barcelona also offers online consultation. There is also an Indian neurosurgeon who might diagnose CCI or Atlanto axial instability, his name is Dr Atul Goel. However, I think he only consults in person.
Are you on Facebook? There is a group on Facebook that I heartily recommend you to join, which is focused on discussing these structural issues and on finding knowledgeable doctors. Here's the link: https://www.facebook.com/groups/1353765701467793/.

 

[Manoj Nadgouda]

@Gloria
What is the doseage of Stugeron or Pentoxifylline did you take and how long it took to show difference (improvement)

 

[GloriaDG]

@Gloria
What is the doseage of Stugeron or Pentoxifylline did you take and how long it took to show difference (improvement)

Stugeron 25 mg every 4 - 6 hours (3 or 4 times a day). The effect was immediate for me and then I kept on taking it for several months. I gradually reduced the dosage after six months and now I'm currently taking one 25 mg pill per day. It doesn't work for everybody, so I hope it does work for you if you want to try it.