• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

32 of 40 chronically ill have spirochetes in their blood

adreno

PR activist
Messages
4,841
Are the people with detected spirochetes in any kind of treatment and what is it? Is anyone improving? Has anyone been clear of these spirochetes upon reexamination?
 
Messages
37
Location
Sweden
Just so everyone will get a perspective what I, the "controversial, manipulative" person write about.

I have Google translated one post from my blog:

For researchers and treating physicians about ME / CFS
By Mats Lindström January 6, 2016

I have compiled what I find most interesting about the disease ME / CFS in some parts, even fibromyalgia. The purpose of this compilation is of course that my hope is that more will be done for these patient groups in Sweden. I hope there can be some benefit.

Examples of what we know about ME / CFS

ME / CFS is an extremely complex disease. But there are some tracks to immerse themselves in. The immune system has been the subject of medical research, especially in recent years. Several interesting research projects underway.

The discrepancies identified have included low / low activity of natural killer cells (NK cells), and increases in various types of "cytokines" that regulate the immune system. Some of these immune abnormalities are also consistent with cancer.

Immune Signatures
Researchers at Columbia University (Mady Hornig et al) discovered last year "distinct immune signatures" in the blood of ME / CFS patients and immune changes in the central nervous system. There is still much more to learn and a pressing issue is how immunological measurements change over time, they also relate to the severity of the disease.

Researchers at Griffith University in Queensland, Australia have examined these issues for several years, and their latest report compares groups of innate and adaptive immune cells in both moderate disease (variable) and our sick (home-bound) patients. They used a set of performance indicators to measure the severity of the disease, including classic self cat ing scales such as Bell Disability Scale.

The researchers found some changes in the immune cells and their receptors over time, particularly in certain natural killer cell receptors. However, a key finding was that people with severe ME / CFS have been significant changes in four key immune categories:
1. Invariant natural killer T cells (NKT cells) - increased compared with healthy controls
2. markers on CD8 + T cells - increased compared to moderately ill
3. Natural killer cell receptors (NK-cell activity) - decreased compared to healthy controls and moderately ill.
4a. γδ T2 cells - increased compared with healthy controls and moderately ill
4b. γδ T1 cells - decreased compared to healthy controls and moderately ill

Natural killer cell receptors (NK cells) particularly important for the immune system
One of the most consistent abnormalities reported in ME / CFS patients over the past 20 years is that NK cells have a lower activity than in healthy people. NK cells play a key role existing tumor cells and virus-infected cells. A reduced activity means obviously a weakened immune system.

A likely explanation for most of the differences in immune cells or receptors in severely ill ME / CFS patients is an ongoing immune activation in response to an infection. This could explain the elevated CD8 + T cell numbers and other findings, such γδ T cells changes; as the authors point out.

The scientific literature on ME / CFS and CFS contains about 6800 publications, but few have touched the details of critically ill patients.

Other known anomalies
CD4 + T cells
We know that there are changes in the CD4 + T cells which can turn off the T-cell mediated immunity at the end of a immune reaction and suppress autoreactive T cells. According to the study below, they also impact on methylation.

Neuro inflammation in ME / CFS and Fibromyalgia patients

So far, a study of neuro-inflammation in ME / CFS patients made - Nakatomistudy found evidence of neuroinflammation in the cingulate cortex, hippocampus, amygdala, thalamus, midbrain and ponsregioner in the brain. The fact that the degree of the widespread neuro-inflammation was strongly correlated with the severity of fatigue, pain, cognitive problems and depression that were in the ME / CFS group were positive. The Japanese study has found evidence of extensive inflammation in the brains of ME / CFS patients. The inflamed areas regulate the reticular activating system, which affects alertness, sensitivity to pain, cognitive impairment and mood.

Gene mutation in the MTHFR 677 and 1298
Gene mutation in the MTHFR 677 and 1298 is relatively common. Vitamin B12 and folic acid are more difficult to be converted to methylated form. Hence it can be so that those who have gene mutation feel better subcutaneously methylcobalamine and that perhaps should use methylfolate instead of folic acid. It is estimated that about half of all people with ME / CFS who feel better with this type of treatment although it can not be demonstrated any lack of B12 / B9 in blood. It seems unusual to take MTHFR test in Sweden.

Lactate in the brain
Researchers in New York have measured the levels of a metabolite called lactate in the cerebrospinal fluid (the fluid that surrounds the brain and spinal cord) of 19 ME/CFS patients, 31 people with major depression and 23 healthy controls.

The average lactate levels were highest in the ME / CFS group (0.92 units) compared to healthy subjects (0.04). The group with depression had an intermediate level (0.40). In addition, the researchers found a significant correlation between lactate and mental fatigue in ME / CFS patients, but not in depressed patients or healthy controls.
Source (p. 13 of the PDF)

Heart rate variability
Dr. Benjamin Natelson and Fumharu Togo undertook in 2013 a study of 52 female ME / CFS patients and saw the correlation between heart rate variability (HRV) and subjective sleep quality. The 52 female patients showed signs of sleep disorders in the form of greatly reduced total sleep time, decreased sleep efficiency, and changes in HRV compared with matched healthy controls.

Vitamin and mineral deficiencies
Many often have low levels of vitamin D. Deficiency include magnesium, zinc, calcium, potassium and iron are present.

Low blood volume = POTS
The evidence suggests that a majority of ME / CFS patients have low blood volume (hypovolemia) causing POTS, a disease characterized by orthostatic intolerance, which many people with ME / CFS have problems.

Hormone imbalance
It is common with the imbalance in the endocrine system. High TSH levels occur. Low DHEA and cortisol levels may be present. It is uncertain when few have undergone such tests.

The imbalance in the gut - Dysbiosis
Low number of lactobacilli and the high number e.colibakterier seems to be prevalent among the ME / CFS patients undergoing bowel foreign samples (not normally offered in Sweden). Incidence of imbalances in the intestinal flora (dysbiosis) among ME sufferers appear to be more the rule than the exception. There is indication that many people with ME / CFS also have high histamine levels, which can be due to lack of DAO enzyme. Food hypersensitivity and even allergies are fairly common.

AMPK enzyme
Researchers in Britain have found that patients with ME / CFS (Fukuda) has a defect in a molecule associated with the production of a protein called AMP kinase (AMPK). The enzyme is important for endurance in the muscles. Quercetine and medicine for diabetes 2 (Metformin Bluefish) have been shown to influence the activity of AMPK enzyme.

Post-Extertional Malaise (PEM) demonstrated - Variations in oxygen uptake

At the two-day cycle test is a significant difference of impaired syreupptagningsförmåga.De most important measurements is the aerobic capacity (VO2peak) and oxygen uptake at anaerobic threshold (VO2AT).

Post-Extertional Malaise (PEM) demonstrated - Intestinal bacteria are reflected in blood after physical exertion
Increased incidence of intestinal bacteria was reflected in ME / CFS patients' blood for up to 48 hours after the cycle test. Rifaximin may help some.

Heat Shock Protein 60 - autoimmunity?
Professor Jonas Blomberg have found an increased frequency of a particular type of auto-antibodies directed against a portion of the antigen.

Cytokine-abnormalities
We know that there is too much of several pro-inflammatory cytokines eg IL-1, IL-6 and IL-17A (Hornig). Fibromyalgia patients have been shown to have 3-fold higher levels of IL-8 (Kadetoff). That ME / CFS is thus a neuro-inflammatory disease seems to me to be quite obvious. It is unclear what causes inflammation. Right now, a study in the Netherlands concerning the IL-1 inhibitors. The study is reported in the spring / summer, 2016.

IL-10
We know that there are lower levels of IL-10, which is an anti-inflammatory cytokine

Mold Toxins common
104 of 112 pcs (93%) ME / CFS patients (JML Fukuda) had mycotoxins in the urine, compared with 0% in healthy control group.

The immune system's role
Most patients with ME / CFS have been diagnosed with the illness, a severe infection or after several infections that succeeded each other. In some cases, even after vaccinations and trauma. The question is whether these infections / loads can lead to parts of the immune system simply becomes weakened and / or lead to autoimmunity. I am no stranger to the non-specific immune system can go on the back burner while the specific may go on apace. The balance can be disturbed. It need not necessarily be so. However, indications are that it is non-specific immune system is weakened in cases ME / CFS developed.

Typical of the non-specific immune system is that it is the body's first line of defense against a pathogen. It responds quickly and can recognize different pathogens. It can attack and often kill pathogens by eating them, releasing substances that harm them or kill cells that become infected to stop the spread. It has no memory without responding in the same way if the body would be attacked by the same pathogen once again, and it can also activate the specific immune system.

If the unspecific immune system are "chronically" weakening does not take much to make someone sick.

To "wake up" the immune system with immunomodulating drugs do more patients with ME / CFS temporarily better - Why?
In several clinical studies, the majority of patients with ME / CFS treated with antiviral medications felt better, regardless of which drug to use - mainly Valtrex and Valcyte, but also Nexavir and later 4ME. Even "Gottfries stafylokockvaccin" seems to have had a positive effect, but mainly only during treatment. After completion of treatment, most disease recurrence. In the studies succeeded, it seems to be common to immune enhancement expires at the end of treatment.

Could it be that all the preparations have an immunomodulating effect and thus increases the activity of NK cells, which are found to have low activity in the majority of ME / CFS?
Increased activity of NK cells leads to increased production of interferon gamma, which in turn leads to increased activity of macrophages and thus a stronger innate immune system.

There is much more to do!

In addition to implementing many more samples there are today able to (in Sweden) to try some established forms of treatment that has proved successful for ME / CFS patients and even fibromyalgia patients in smaller studies, which are used in other medical cases. Not least when it comes to different forms of oxygen therapy.

The majority of ME / CFS patients have a lack of oxygen at the cellular level, I can not prove it when the blood seems to have normal oxygenation of the majority. It is not only reasonable but logical that the body's cells do not receive the amount of oxygen required. Many patients suffer light of lactic acid. If oxygenation works well as lactic acid should disappear relatively quickly. It does not in the small survey I have done in my FB group Database ME / CFS. If the lactic acid does not disappear after a short moment of rest it is more about a lack of oxygen for more than a lack of COQ10 example, D-ribose, NADH, SAMe and other matters related to the citric acid cycle to do.

There are som who do not get the lactic acid as easy, but (like the others) have a fatigue feeling in the body and in the brain. Oxygen can probably do wonders with them also.

I mention a few examples of treatments that I believe can work very well in both patients with ME / CFS and fibromyalgia. It has to do with oxygenation. Most people know that altitude training is good for increasing oxygenation. To affect the ability to produce more red blood.. That repeated treatments with Hyperbaric oxygen therapy (HBO) stimulates vascular formation and also can be provided in other conditions with poor micro-circulation and / or infection, may not everyone know. Oxygen strengthens the immune system!

1. Eporatio (EPO) treatment
In a study of 60 CFS patients treated with the low dose EPO (8,000 units). Even after 15 days of treatment was 51 pc (85%) of 60 patients improved - with reduced symptoms.

EPO is a drug for anemia.
There are three main types of anemia
1. As a result of blood loss
2. As a result of reduced production of red blood cells
3. Due to increased destruction of red blood cells.

If you specifically looking at p.1 and scroll up a bit on this page so can all see a connection. Many people with ME / CFS have as little blood in the body as one who needs a blood transfusion after a car accident! It has also found a strong correlation between increased lactate level in the brains of ME/CFS patients compared with healthy control group.
Source (p. 13 of the PDF)

2. Oxygen Chamber / High-pressure chamber (HBO)

A clinical trial with 48 women diagnosed with fibromyalgia, showed that the state improved in each of those who completed a two-month oxygen therapy - by staying in the oxygen chamber.
Source

https://newsaboutdisease.wordpress.com/2016/01/06/till-forskare-och-behandlande-lakare-om-mecfs/

2016-01-06

Mats Lindström
Relative
 
Messages
37
Location
Sweden
Are the people with detected spirochetes in any kind of treatment and what is it? Is anyone improving? Has anyone been clear of these spirochetes upon reexamination?

This is not a scientific method. This means that no doctor can help. Some get anyway antibiotics by their doctors now, but far from all. Some have sent blood samples to Germany where they have better and more reliable test. My wife has sent blood to arminlabs (ELISPOT and CD57). If she has a positive outcome of these cases, we will either go to Finland or Germany for long-term treatment with antibiotics, which are prohibited in Sweden.
 
Messages
37
Location
Sweden
@Kina I do not know more than you . It's the biomedical analyst who says it is spirochetes. Apparently, one sees more clearly direct in the microscope than by camera. I do not doubt her skills. She has worked in the laboratory for several years. She has also been trained by Boszic in Hungary. He invented the dualdur method.

I hope you understand me. I want this will be followed up. No matter what it is. There should not be in the blood. If it 's found in the blood of 32 chronically ill there maybe is a reason for the disease and symptoms?

This is a short movie on my wife's blood. You will see two "swimming things". The second is more obvious.
 
Messages
37
Location
Sweden
@Strawberry

Both Jonas and I are healthy. But our wifes have severe ME/CFS. We are doing our best to find out how to make them better. It is difficult, but I am sure we will find some bio markers soon. We will never give up!

ME / CFS is a severe disease which is also very difficult to diagnose. The cause of the disease is difficult to diagnose because obvious that tiredness (fatigue) occurs in so many other diseases. When other diseases have been excluded by laboratory tests and physical examinations, you can be diagnosed with ME / CFS if certain criteria are met. The cause or causes of ME / CFS is still unclear. There are a number of theories have been proposed:

- Virus infection
- Mycoplasma infection
- Immune or endocrine dysfunction
- Dysfunction of the autonomic nervous system
- Contaminants
- Genetic factors
- Candida overgrowth
- Dysbiosis
- Heavy metal poisoning
- Mould
- Lyme Disease and co-infections
 
Messages
37
Location
Sweden
I hope you all understand that I do what I can to find the reason why my wife and several others have this terrible disease. I have no laboratory. I appeal for help. I hope that researchers should do more and also be interested in this.

It looks like spirochete for me , but I'm not professionel and I was not present when investigations were made. Titti,
who is a trained biomedical scientist, is confident that there are spirochetes. You will see it much clearly when you look in the microscope instead of camera. I have no reason to doubt her skills when she worked in the laboratory and is also trained by Boszik in Hungary. However it would be interesting to find out what it is. Therefore, I would like to see a following up study with these 32 people who have these swimming findings. There are after all, something in their blood that obviously should not be there.

My wife and some more have sent blood to arminlabs in Germany for testing with Elispot (iSpot Lyme in US) and CD57.

iSpot Lyme is a highly reliable and accurate test with a sensitivity of 84% and specificity of 94%.

https://neurorelief.com/index.php?p=cms&cid=486&pid=149

I will return when we get answers.Have a nice weekend!

Mats
Sweden
 
Messages
1
I took my boy who has a positive on Borrelia and TWAR using Elispot LTT but negative on ELISA to do the blood test by Titti. Her video camera is a bit slow so you do not see the typical spirochetl like movement HOWEVER since I had a chance to look in the microscope I could confirm it is defintelly visible spirochets with typical spirochet like movement. She has found a very smart way to find the spirochets that is described in the paper. I have no doubit that her method is working. She also found probable Mycoplasma also:-(
 

SuzieSam

Senior Member
Messages
201
Location
Israel
@taniaaust1 I found this thread when I was searching for info about testing. I want to go to Prof De Meirleir in Belgium, but I'm wary that he seems to find everyone has Lyme, whereas all the other tests are very unreliable.

What's so special about his testing? Why did this patient group go to this trouble and expense instead of sending their blood to his lab? Should we all be doing this dark light blood examination?

@matsli I'd love your opinion!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@taniaaust1 I found this thread when I was searching for info about testing. I want to go to Prof De Meirleir in Belgium, but I'm wary that he seems to find everyone has Lyme, whereas all the other tests are very unreliable.

What's so special about his testing? Why did this patient group go to this trouble and expense instead of sending their blood to his lab? Should we all be doing this dark light blood examination?

Ive got no idea what Prof De Meirleir really does in Belgium, though I have met him once when he come to Australia and gave a talk on ME/CFS along with Dr Peterson and another well known ME expert.

My sister had her blood very closely looked at locally at a Naturopaths.. and they had it so it could be seen on a monitor and able to take pictures of it.
 

SuzieSam

Senior Member
Messages
201
Location
Israel
I've got to look into this myself, I guess. But so bloody brain fogged, and it's painful in my brain. Probably Lyme symptoms
 

Hip

Senior Member
Messages
17,824
Does anyone know if there are any updates on this method of detecting spirochete infection in the blood?

I find the method clever; quoting from the study:
Venous blood is centrifuged to separate plasma and blood cells. The liquid in the area between the plasma and blood cells is sucked up with a pipette. Then it is centrifuged again and finally applied to a glass lens for microscope (dark field), 800 x magnification.

By centrifuging a volume of blood in a test tube, the contents of the blood will be separated according to weight and density.

So the blood cells which are large and heavy will move to the bottom of the test tube being centrifuged, and then just on top of this blood cell layer you will find the spirochetes, as spirochetes are smaller and lighter than blood cells, so will float just above the blood cells.

So by centrifuging and then sucking up the liquid layer just above the blood cell layer, this increases you chances of finding a spirochete. This is a clever approach.

This is how a blood sample separates in a centrifuge:
705340387b52f621c59666110dc87b1d.gif




I am not sure how much blood they extracted from each patient, but I guess if you increase the volume of blood being extracted and centrifuged (eg, used say 200 ml of blood rather than the normal 2 ml of blood normally extracted in blood tests), that would further increase the chances of finding a spirochete by this centrifuge method.
 
Last edited:

Abha

Abha
Messages
267
Location
UK
I hope you all understand that I do what I can to find the reason why my wife and several others have this terrible disease. I have no laboratory. I appeal for help. I hope that researchers should do more and also be interested in this.

It looks like spirochete for me , but I'm not professionel and I was not present when investigations were made. Titti,
who is a trained biomedical scientist, is confident that there are spirochetes. You will see it much clearly when you look in the microscope instead of camera. I have no reason to doubt her skills when she worked in the laboratory and is also trained by Boszik in Hungary. However it would be interesting to find out what it is. Therefore, I would like to see a following up study with these 32 people who have these swimming findings. There are after all, something in their blood that obviously should not be there.

My wife and some more have sent blood to arminlabs in Germany for testing with Elispot (iSpot Lyme in US) and CD57.

iSpot Lyme is a highly reliable and accurate test with a sensitivity of 84% and specificity of 94%.

https://neurorelief.com/index.php?p=cms&cid=486&pid=149

I will return when we get answers.Have a nice weekend!

Mats
Sweden

Hi Mats

Sorry to read about your wife's illness.Have you made any progress re that?

I have just come upon this thread(still have to read it fully) and it interests me as I have had rickettsia infections(spirochetes involved) for years(probably got it in Zambia in late 60s early 70s but could be from other countries too.)This is all mentioned in Dr Cecile Jadin's book on"A disease called Fatigue"I have attended her clinics in Belgium and in Johannesburg too.These rickettsia can enter the brain(from my understanding and from what Dr Jadin has reported)They are probably the cause(OPs too) of my mitochondrial dysfunction(Dr Myhill's tests) and cause a lot of my gut/brain problems.Professor Jadin,Dr Jadin's father who worked in the Congo and other Tropical areas, studied intracellular bacterial infections, and was considered an authority on rickettsioses and neo-rickettsioses, on malaria, leishmaniasis and various other organisms. He worked at the Pasteur Institute in Paris and Tunisia.