CFS/ ME can’t straight leg raise?

[ponypanic]

I had iraqibacter ( acinetobacter bunamii )sp I’ve had ME for 6 months

 

[Apo Sci]

That one is drug resistant but doesn't block apoptosis (would be a coinfection) so I suspect you have another viral infection(s) going on. EBV, HHV6, borrelia afzelli?

 

[ponypanic]

Have been tested for EBV which was negative , but not the others. Thankyou I will ask my consultant to see if they can test for those

 

[Apo Sci]

The ones that do it are CMV, EBV, HHV6, lyme afzelli, rickettsia and bartonella. Prob HHV6. If you're able you can also get a nagalase blood test to see where your levels are at. Prob not high yet because you have apoptosis signs.

 

[ponypanic]

What’s interesting about the herpes one is that I have had shingles 4 or 5 times and a reoccurring cold sore to my nose ( following a dog bite as a child) probably about 30 times, but I haven’t had either pop up for about 3 years!

 

[Apo Sci]

I did some more digging. It turns out that the chicken pox virus blocks apoptosis too (varicella zoster).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302337

I'll have to add it to the list. So you know one of the culprits. I suspect more are around though because most people with varicella zoster recover. Different organisms block apoptosis in different ways with a cumulative total effect. Also, they accelerate the spread of later infections by priming them so infections can get into tissues they normally wouldn't have access to.

 

[ponypanic]

That makes sense, I suppose I must have had a weakened immune system prior to the varicella and zosters and that’s weakened my immune system even more! I just found out what the leg tremors are called - orthostatic tremor!

 

[Apo Sci]

That makes sense, I suppose I must have had a weakened immune system prior to the varicella and zosters and that’s weakened my immune system even more! I just found out what the leg tremors are called - orthostatic tremor!

If you understand what you have then one can look up the pathways that are blocked and try supplements and treatments to unblock them. That's my approach. By the way, I had chickenpox and shingles too. However, it's very tricky because a lot of supplements can interfere with the process, the process is painful and healing takes a long time because the body has to clear tissue layer by layer.

By the way, my experience is only with the twitches (fasciculation) so if you're experiencing that I would pursue it. However, since I didn't have orthostatic tremors I can't say whether there might be a relationship. MDs don't yet know the cause of that one either and it's considered very rare. Do you have any neck problems and postural orthostatic hypotension (POTS)? These might be CCI. Given the ligament laxity problem people are having I'd ask the doc about the possibility of craniocervical instability which some CFS patients have had, I assume due to damage to the ligaments.

 

[ponypanic]

If you understand what you have then one can look up the pathways that are blocked and try supplements and treatments to unblock them. That's my approach. By the way, I had chickenpox and shingles too. However, it's very tricky because a lot of supplements can interfere with the process, the process is painful and healing takes a long time because the body has to clear tissue layer by layer.

By the way, my experience is only with the twitches (fasciculation) so if you're experiencing that I would pursue it. However, since I didn't have orthostatic tremors I can't say whether there might be a relationship. MDs don't yet know the cause of that one either and it's considered very rare. Do you have any neck problems and postural orthostatic hypotension (POTS)? These might be CCI. Given the ligament laxity problem people are having I'd ask the doc about the possibility of craniocervical instability which some CFS patients have had, I assume due to damage to the ligaments.

Sorry for late reply!
im not sure Re pots, when I stand legs start to shake and Iget back pain, then I start swaying, tipping forward and feel sick. I only have a ManualBP machine so need to get an automatic one to test. I had considered CCI , I’ve had a lot of neck/ shoulder issues in the past- torticollis, frozen shoulders ( both sides) osteoporosis in neck so wouldn’t be surprised if I have this!
Re- the cold sores, I’ll have a look at supplements.
Thankyou for taking the time to discuss this with me. I find this disease to be very isolating and with so little understanding from even medical people. I saw my gp recently, in a 10 minute consultation she offered painkillers, antidepressants and hrt! She told me to go swimming ( I’m allergic to chlorine) and I’m not at a going swimming stage!!! I need a knowledgable & understanding GP !

 

[Apo Sci]

Sorry for late reply!
im not sure Re pots, when I stand legs start to shake and Iget back pain, then I start swaying, tipping forward and feel sick. I only have a ManualBP machine so need to get an automatic one to test. I had considered CCI , I’ve had a lot of neck/ shoulder issues in the past- torticollis, frozen shoulders ( both sides) osteoporosis in neck so wouldn’t be surprised if I have this!
Re- the cold sores, I’ll have a look at supplements.
Thankyou for taking the time to discuss this with me. I find this disease to be very isolating and with so little understanding from even medical people. I saw my gp recently, in a 10 minute consultation she offered painkillers, antidepressants and hrt! She told me to go swimming ( I’m allergic to chlorine) and I’m not at a going swimming stage!!! I need a knowledgable & understanding GP !

Sorry for late reply!
im not sure Re pots, when I stand legs start to shake and Iget back pain, then I start swaying, tipping forward and feel sick. I only have a ManualBP machine so need to get an automatic one to test. I had considered CCI , I’ve had a lot of neck/ shoulder issues in the past- torticollis, frozen shoulders ( both sides) osteoporosis in neck so wouldn’t be surprised if I have this!
Re- the cold sores, I’ll have a look at supplements.
Thankyou for taking the time to discuss this with me. I find this disease to be very isolating and with so little understanding from even medical people. I saw my gp recently, in a 10 minute consultation she offered painkillers, antidepressants and hrt! She told me to go swimming ( I’m allergic to chlorine) and I’m not at a going swimming stage!!! I need a knowledgable & understanding GP !

You're most welcome. MDs are very busy people so they rely on guidelines like UpToDate. Unfortunately, drugs and other medical therapies haven't been effective yet so they just don't have much to offer.

Keep asking questions.

Best,
Apo

 

[ponypanic]

You're most welcome. MDs are very busy people so they rely on guidelines like UpToDate. Unfortunately, drugs and other medical therapies haven't been effective yet so they just don't have much to offer.

Keep asking questions.

Best,
Apo

That’s true, I’m actually a advanced nurse practitioner but unable to practice now. I know They are trying their best and the nice guidelines are not helpful !
how long have you have ME/ CFS

 

[Apo Sci]

Since 2008. I'm a long-term very high functioning, ME patient because I've been researching and self-experimenting with the apoptosis approach. I live alone, get SSD disability, can tolerate light without glasses and do my own cleaning, cooking and chores. It's taken a long time because a lot of things don't work and diet is also important. I want to bring it to market but don't yet have the energy to put the work in to get the business going. I've tried approaching researchers but they all seem busy with their pet theories.

The body wants to kill virally infected cells with apoptosis however persistant viruses block this. Prior to treatment areas are cold, weak and painful. When apoptosis is triggered it kills the infected cells then there is localized swelling like the phalanges in this hand. The process takes months because the body has to do it layer by layer. For comparison, nerve regeneration is 1 mm/day and this takes longer because muscle, fascia, tendons, bone and periosteum are infected. The inflammation is painful but then areas go numb and get temporarily tingly due to peripheral nerve injury and heals pain free. Eventually the swelling goes down and the area is much stronger. The picture of the foot with the suction cup is from Sept 14, 2019. Here's the same foot five months later with the swollen area lessened, notice the improvement and lessening of the inflammed areas as it heals. My goal is to market an apoptosis regimen for herpes infections (including CFS and Raynauds disease). This occurs throughout the body, ribs, head etc and is time consuming to treat. I've seen some amazing effects, like Raynaud's disease, cold skin, light/sound sensitivity and headaches disappearing. Also big cognitive, energy and exercise tolerance gains. Prior to treatment I could only do two sets of light strength training, now I can do three heavy sets and recover almost normally except for areas which are still being treated.

 

[ponypanic]

Since 2008. I'm a long-term very high functioning, ME patient because I've been researching and self-experimenting with the apoptosis approach. I live alone, get SSD disability, can tolerate light without glasses and do my own cleaning, cooking and chores. It's taken a long time because a lot of things don't work and diet is also important. I want to bring it to market but don't yet have the energy to put the work in to get the business going. I've tried approaching researchers but they all seem busy with their pet theories.

The body wants to kill virally infected cells with apoptosis however persistant viruses block this. Prior to treatment areas are cold, weak and painful. When apoptosis is triggered it kills the infected cells then there is localized swelling like the phalanges in this hand. The process takes months because the body has to do it layer by layer. For comparison, nerve regeneration is 1 mm/day and this takes longer because muscle, fascia, tendons, bone and periosteum are infected. The inflammation is painful but then areas go numb and get temporarily tingly due to peripheral nerve injury and heals pain free. Eventually the swelling goes down and the area is much stronger. The picture of the foot with the suction cup is from Sept 14, 2019. Here's the same foot five months later with the swollen area lessened, notice the improvement and lessening of the inflammed areas as it heals. My goal is to market an apoptosis regimen for herpes infections (including CFS and Raynauds disease). This occurs throughout the body, ribs, head etc and is time consuming to treat. I've seen some amazing effects, like Raynaud's disease, cold skin, light/sound sensitivity and headaches disappearing. Also big cognitive, energy and exercise tolerance gains. Prior to treatment I could only do two sets of light strength training, now I can do three heavy sets and recover almost normally except for areas which are still being treated.

That’s amazing and very promising! Is it just suctioning or are supplements involved?
I am so surprised that no one has taken this up, researching is so time consuming though and you have To go through lots of processes before you could even start a study!
I’m glad you’ve had some improvements, gives hope as I can’t even think about having 12 years of this as I’m way less functioning, not able to do chores! I’m dependant on my husband for meals and transport etc

 

[Apo Sci]

That’s amazing and very promising! Is it just suctioning or are supplements involved?
I am so surprised that no one has taken this up, researching is so time consuming though and you have To go through lots of processes before you could even start a study!
I’m glad you’ve had some improvements, gives hope as I can’t even think about having 12 years of this as I’m way less functioning, not able to do chores! I’m dependant on my husband for meals and transport etc

Thank you. I use supplements, herb combinations, individual vitamins, targeted exercise, electrical stimulation, nicotine, nutritional support, drugs for pain (gabapentin, ibuprofen, naproxen sodium, vicodin as needed), and antihistamine to manage the swelling. I also take drugs for systemic lupus erythematosis which I contracted four years after I contracted ME.

Apoptosis was the only way I knew of that the body could clear persistent viruses. It is used in cancer therapy. The problem is you can't do it too fast or you get a excessive pain and possibly a cytokine storm.

I don't think suctioning would do anything for the process. It's all through apoptosis from the treatment. The suction cup was just from something unrelated.

 

[Not dead yet!]

Hi
So just a bit of background , 6 m method ago i was for and well, active, working, holidays hobbies and interest, then
Had what I thought was onset of flu and have not recovered, I am mostly housebound, have shortness of breath on slightest exertion, even dressing/ tinnitus/ brain fog/ trembling limbs , headaches, back pain etc etc
I’ve applied for PIP and learnt that part of the test was straight leg raises , so I thought I would test myself
I can’t do it! I can’t lift my legs up when laid straight, I can bend my knees , but I can’t lift up my legs , the most I got was 3 inches, my leg start to shake and feels heavy , and then I get short of breath
I do get back pain but it’s intermittent, occasional sciatica is all.
Has anyone experienced this ?
Feeling a bit freaked out
Thankyou in advance

I can raise my legs straight out while lying on the floor. I am generally weak lately and the weakness comes and goes depending on if I've been mildly glutened or not, or whether I have an infection or not. Both of those make me too weak to stand up without holding on to something, even a cane, just something. Right now, I don't need a cane.

What's PIP?

I've been chairbound almost daily since I went to visit family last fall. It's been a long recovery. I'm going to try and use the spring momentum to intensify my vitamin protocol and see if I can get more active this summer. I need some sunshine, I can feel the drop in vitamin D like an ache in my bones.

 

[ponypanic]

Aw sorry to hear that, as a qualified nurse before this illness I had no idea of the suffering this disease causes, the daily struggle people have just to do simple tasks. We rarely received lectures on CFS/Me/ fibromyalgia an yet I’ve been to lectures on neurology and immunology !
PIP is the U.K. disability payments fromt
He government.
do you take a vitamin d supplement? If not, start taking one!

 

[ponypanic]

Thank you. I use supplements, herb combinations, individual vitamins, targeted exercise, electrical stimulation, nicotine, nutritional support, drugs for pain (gabapentin, ibuprofen, naproxen sodium, vicodin as needed), and antihistamine to manage the swelling. I also take drugs for systemic lupus erythematosis which I contracted four years after I contracted ME.

Apoptosis was the only way I knew of that the body could clear persistent viruses. It is used in cancer therapy. The problem is you can't do it too fast or you get a excessive pain and possibly a cytokine storm.

I don't think suctioning would do anything for the process. It's all through apoptosis from the treatment. The suction cup was just from

 

[ponypanic]

Oh no you have SLE ! I was wondering if I had this but apparently not, lot of crossover symptoms! I can’t take many painkillers ,I cope with the pain, use heat pads and when it really bad take paracetamol , which knocks me out! I eat mostly plant based & fish, rarely cheese. i do vape with nicotine ( my only vice)
I don’t understand what apoptosis treatment is ? How do I find more info on this, I tried google but just getting scientific articles that I’m finding too taxing to read!

 

[Apo Sci]

Oh no you have SLE ! I was wondering if I had this but apparently not, lot of crossover symptoms! I can’t take many painkillers ,I cope with the pain, use heat pads and when it really bad take paracetamol , which knocks me out! I eat mostly plant based & fish, rarely cheese. i do vape with nicotine ( my only vice)
I don’t understand what apoptosis treatment is ? How do I find more info on this, I tried google but just getting scientific articles that I’m finding too taxing to read!

Actually according to my rheumatologist I have SLE and ME. I had ME first then, four years later, developed SLE. Original cause was EBV, HHV6 infections then developed SLE after doing GcMAF therapy for high nagalase. There was no warning that this may be a side effect.

Brain fog/difficulty concentrating is a hallmark of ME. I had problems with animal naming neuropsychology test but I've improved a lot. As ME improves, it also improves.

Here are a few articles on apoptosis. It's basically a self-destruct system for cell suicide designed to kill cancer and viruses.

Apoptosis (article) | Developmental biology | Khan Academy

Programmed cell death and how it is different from necrosis (cell death due to injury).

www.khanacademy.org

This one is a bit more complicated.

Apoptosis in cancer: from pathogenesis to treatment - Journal of Experimental & Clinical Cancer Research

Apoptosis is an ordered and orchestrated cellular process that occurs in physiological and pathological conditions. It is also one of the most studied topics among cell biologists. An understanding of the underlying mechanism of apoptosis is important as it plays a pivotal role in the...

jeccr.biomedcentral.com

Actually, ME is worse than SLE. SLE is managed well with immunosuppressants. It makes me more prone to depression and fatigue but much less than ME does.

 

[ponypanic]

Actually according to my rheumatologist I have SLE and ME. I had ME first then, four years later, developed SLE. Original cause was EBV, HHV6 infections then developed SLE after doing GcMAF therapy for high nagalase. There was no warning that this may be a side effect.

Brain fog/difficulty concentrating is a hallmark of ME. I had problems with animal naming neuropsychology test but I've improved a lot. As ME improves, it also improves.

Here are a few articles on apoptosis. It's basically a self-destruct system for cell suicide designed to kill cancer and viruses.

Apoptosis (article) | Developmental biology | Khan Academy

Programmed cell death and how it is different from necrosis (cell death due to injury).

www.khanacademy.org

This one is a bit more complicated.

Apoptosis in cancer: from pathogenesis to treatment - Journal of Experimental & Clinical Cancer Research

Apoptosis is an ordered and orchestrated cellular process that occurs in physiological and pathological conditions. It is also one of the most studied topics among cell biologists. An understanding of the underlying mechanism of apoptosis is important as it plays a pivotal role in the...

jeccr.biomedcentral.com

Actually, ME is worse than SLE. SLE is managed well with immunosuppressants. It makes me more prone to depression and fatigue but much less than ME does.

Thankyou , I read the first one, this makes sense! That’s interesting regarding the T cells as I read somewhere they found or theorised a link with the a particular T cell that is also responsible for asthma and psoriasis, both conditions which I suffer from. What is interesting is my asthma inexplicably became much worse 18 months ago, a year before the ME started, the psoriasis was managed with vitamin d and is kept under control with vitamin d tablets! Also interesting I had random chemical reactions one to SLS and the other to a earring prior to illness, I suspect that my ME. did not just start August 2019 with iraqibacter but that I’ve had something for a while and it just became way worse!
the second article I will read later as my brain is a bit fried today!
It’s the th 17 cell, I was referring too!