Patients with IBM all over the world are told that there is no cure. And what is more important the consensus in the medical society is there is no treatment. But what if someone told you that even though he cannot cure your IBM, but can make you feel stronger and treat your body?
Deep understanding of the immune system, years of research and clinical practice in autoimmune diseases treatment made it possible for us to tell you that we CAN treat you.
From five to six hours, seemingly countless injections, magnetic stimulation, and one-on-one physical therapy with a doctor. Daily. And this daily treatment lasts for 4 to 6 weeks on average. Does that sound like some sort of boot camp? Perhaps, but the results make it worth it. It is not just an effort to stop the progression of symptoms, it is a likely chance to fight back what was lost from the disease: pick a cup with one hand, get up from the chair, walk without fear of falling, or even thinking how to take the next step.
Let's talk about what we in Lymphatech Clinic, Perm, Russia believe to be the approach to IBM therapy, based on our experience with patients from around the world.
Approach to Diagnostics
We believe that both the patient and the doctor understand that every situation is unique. We are committed to proper expectations so that the patient can make an informed decision on whether to travel to Russia for medical treatment or not. Therefore, before we start planning the trip, we must first make a preliminary analysis of the patient. After you contact us, we will ask for more details, including the full patient history, any medical documents, and test results, vitals, photos, and much more. This is the most critical part of our undertaking as a thorough study gives both sides confidence and hope.
We do not study IBM only. It is foundational that everything in the human body is interconnected. The first week of the medical program is usually busy for the patient. We do not hesitate to jump right in: treatment begins on the very first day. At the same time, the primary appointments, physical examinations, bloodwork, diagnostic tests take place. One of our patients called the first day to be an Executive exam. Other patients have said that it only took a few days for our clinic to know more about them than all of the other doctors they have met combined.
We provide a thorough approach to collecting all the required data to fully understand your current condition and use it as the benchmark when evaluating the treatment results.
The metrics that we use to track down progress are:
Bloodwork results
EMG with central motor pathways
Motor neuron excitability
Motor unit potential studies
Muscle MRI
The volume of the muscle
The range of the movements
Oxford scale of muscle strength grading
Dynamometry as well as the patient’s subjective assessment.
We do all of the above, during, and after the course of treatment.
While the world is waiting for a single silver bullet to treat inclusion body myositis, our view is that as doctors we already have the keys to suppress IBM and increase muscle force via a multi-disciplinary approach.
Here are the 8 Steps we use for inclusion body myositis treatment:
Step 1. Improve General Metabolism
Target: Improve general metabolism and microcirculation and create the environment for new muscle to grow.
Procedure: Intravenous infusion.
Duration of the procedure: 1 hour.
You already know that Inclusion Body Myositis is characterized by progressive muscle damage, i.e. muscle cells die. This process is not uncommon, it actually happens all the time in every human body. Dead cells with all their waste products are contained in pericellular space and then “flushed” through the lymphatic system. The challenge is that the scale of this process is bigger with inclusion body myositis, both the metabolism and microcirculation are depressed. To assist the body with this issue, we use the compound drug with riboxin, nicotinamide and others.
Riboxin promotes carbohydrate, protein, and fat metabolism, tissue oxygenation. It also limits the area of necrosis, has an anabolic effect, and activates tissue regeneration. Nicotinamide improves cerebral blood flow, metabolic processes in the central nervous system, eliminate reflex disturbances, sensory disorders, and improves intellectual and mnestic functions of the brain.Given its features, it is widely used in intensive care units in neurological departments across Russia.
Step 2. Enhance Lymphatic System
Target: Increase lymphatic drainage function in the affected muscles.
Procedure: Subcutaneous «Lymphatropic» infusion.
Duration of the procedure: 30 minutes.
Along with the depressed metabolism, the body is not able to clean itself. Drainage function is compromised, especially in the affected muscles. So we need to bring in the cleaner that will provide support to the lymphatic system. We use a compound drug with succinic acid and other agents and target it to the lymphatic region of the affected muscles via subcutaneous injections with help of an infusion pump. You may have seen the yellow substance in the syringes in our video.
Lymphatic System is the physical infrastructure for your immunity. The lymphatic system transports chemical data from the affected site to the lymphatic nodes. Lymphatic nodes are training centers for immune cells. If it does not work properly, the immunity will be imbalanced despite the efforts of different doctors.
Succinic acid shows cerebroprotective, antihypoxic, antioxidant, and metabolic effects, and prevents amyloid accumulation. Due to its regulatory effect, the energy potential of cells, in general, is being restored. Succinic acid has a pronounced antitoxic effect, providing the necessary energy support to the systems of detoxification and elimination.
For many years we have successfully used this patented technology for treating multiple diseases, including lymphedema (swelling) and atherosclerosis.
Step 3. Reduce Creatine Phosphokinase (CPK)
Target: Reduce inflammation.
Procedure: Subcutaneous «Lymphatropic» injection.
Duration of the procedure: 30 minutes.
It is not just about creatine phosphokinase but about the inflammatory process in general. You probably heard that high-dose prednisone does not work «while decreasing inflammation but increases amyloid accumulation and worsens strength». We use dexamethasone instead, which has a more pronounced immunosuppressive effect. A desired pharmacological effect is achieved with targeted doses up to 7 times less than with prednisone if used intravenously. Though IBM is a system process, it usually affects very specific muscle groups. We address the medication locally to the region of inflammation via the subcutaneous lymphotropic injections creating a remedy depot and reducing the dose even further.
Step 4. Calm The Cytokine Storm and Absorb Antibodies
Target: Balance the immune system and reduce the autoimmune component.
Procedure: Subcutaneous «Lymphatropic» injection.
Duration of the procedure: 15 minutes.
A common immunopathogenic mechanism of idiopathic inflammatory myopathies is the cytokine-driven infiltration of immune cells into the muscle tissue. Cytokines are produced by a specific population of T Cells. We use an immunogram to find out the ratio of aggressive and inhibitory cells. Separately, we test drugs that may affect the immune system and choose a combination of the two. The purpose of this therapy is to give instruction to the immune system to "educate" other populations of cells that will act differently.
One of these drugs is Polyoxidonium. Recent research showed the potential benefit of azoximer bromide (Polyoxidonium) in the normalization of the immune status parameters. The results of treatment showed the predominant effect of the drug on the cellular effector mechanisms of the immune system, as well as on the normalization of the content of pro-inflammatory cytokines. At the same time, a unique feature of Polyoxidonium is that when interacting with human peripheral blood monocytes, it activates TNF (tumor necrosis factor) synthesis only in people with initially low or medium levels of its production. In individuals with initially high levels, the drug has no effect or slightly reduces the production of this cytokine. Such properties exclude the minimal possibility of hyperactivation of the immune system under its influence, which is an important condition for the use of any immunotropic drug.
This is a long-term therapy, so the patient takes some of the drugs home to continue the treatment while not in the clinic.
Step 5. Restore innervation
Target: Enhance the functions of the peripheral and central nervous systems.
Procedure: Subcutaneous «Lymphatropic» injection.
Duration of the procedure: 15 minutes.
When muscle atrophy occurs, the nervous system is also affected: the conductivity of the nerve fiber deteriorates, reflexes suffer, and neuropathy appears. We use cholinesterase inhibitors in the treatment of this part of the IBM picture.
The use of cholinesterase inhibitors has a direct stimulating effect on the conduction of impulses along nerve fibers, interneuronal and neuromuscular synapses of the peripheral and central nervous systems. Pharmacological action is based on a combination of two mechanisms of action: blockage of potassium channels in the membrane of neurons and muscle cells and reversible inhibition of cholinesterase at synapses.
Step 6. Improve the plasticity of the brain and work on new synapses
Target: Increase cortical excitability, motor response.
Procedure: Repetitive Transcranial Magnetic Stimulation (rTMS).
Duration of the procedure: 30 minutes — 1 hour.
It is known that repetitive transcranial magnetic stimulation (rTMS) has an effect on the development of new synapses in the brain. Research in the field of long-term potentiation of the cortex is still underway, but today we see in our patients that the excitability of motor neurons responds to transcranial magnetic stimulation and, in combination with physiotherapy, persists for 4-6 months and more.
Why is it important? By increasing the excitability of the motor representation in the cortex, while ensuring the normalization of impulse conductivity along with the peripheral nervous system due to lymphotropic therapy using cholinesterase inhibitors, we increase the motor response, thereby increasing the strength of muscle contractions during physiotherapy.
Step 7. Stimulate The Muscles
Target: Increase the muscle strength, sensory response, cortical excitability.
Procedure: Repetitive Peripheral Magnetic Stimulation (rPMS).
Duration of the procedure: 1 — 2 hours.
Repetitive peripheral magnetic stimulation lets us concentrate on the muscles. High-frequency protocols work out the desired group of muscles while low-frequency protocols reduce spasticity and hypertonicity. At the same time, the rPMS improves sensory response and cortical excitability.
Using the rPMS for the stimulation of the lower motor neuron works on the motor response in the innervated group of muscles and the conductivity of the peripheral nervous system.
Step 8. Physical Training
Target: Increase the muscle strength, mobility in the joints.
Procedure: Physical therapy.
Duration of the procedure: 1 hour.
So we come to physiotherapy.
What have we achieved so far? Comprehensive treatment allows us to:
Improve overall metabolism and microcirculation, transfer metabolism to the anabolic phase.
Improve the drainage function of the lymphatic system in areas of inflammation.
Relieve tissue inflammation.
Normalize the immune response.
Improve conductivity in the central and peripheral nervous systems.
"Preheat" motor neurons and increase the amplitude of muscle contractions.
Locally train muscle groups, enhance the sensory component of the peripheral nervous system and indirectly enhance cortical excitability even more.
Only after completing these seven steps, we are ready to start physiotherapy under the full supervision of an experienced physician. During training, we focus on muscle strength, joint mobility, fine motor skills.
We repeat these steps six days a week providing a team of 3 doctors and a nurse for each patient.
Sample Results
We believe no one here expects an IBM patient to jump and go after two weeks. This is obviously because if muscles, and hence, nerves and joints have been deteriorating for years it takes time to recover even if we had a magic pill. However, with our treatment, we see day-by-day improvements which we collect and wright down. Watch this short Youtube video of one of our last patients with IBM (pending).
This gentleman on the video was not able to cut his bird leg with his right arm when we started treatment 4 weeks ago. This was due to insufficient muscle force, decreased fine motor. For most folks, this video may mean nothing, but for IBM patients it is definitely a step forward. We hope to upload more soon.
When we start our clinical trial we will be able to record much more evidence.
Visiting Russia for Medical Care is Safe and Comfortable
Coming to Perm, Russia for medical treatment is a leap of faith on its own, we understand that. But also the idea to travel and stay in another country for 4-6 weeks may be an even bigger concern: how to travel during the pandemic? Where to stay? How to get to the clinic and back? How to stay in touch with your loved ones back home? How to communicate with the people both in and outside the clinic? Where to eat? What to see? How to get out shopping? Is there a church? And so on. Read here more about visiting Russia for medical care.
Your personal assistant meets you on arrival and takes you home. Though there is a variety of hotels in Perm we always recommend picking an apartment as a place to stay, particularly due to the length of time you will be in Russia. In fact, the clinic provides an apartment where both you and the people that will accompany you can feel comfortable and safe. There are three separate apartments: 2 beds, a small studio, a large studio. Every apartment is completely furnished to your needs and has an equipped kitchen, bed, working area, TV, bathroom, washing machine, iron, ironing board, drying rack, high-speed internet, and a beautiful view of the city and the banks of the river Kama.
Perm is a 2-hour flight east of Moscow, has a population of over 1 million people, and is situated on the banks of the Kama River. A business and cultural center, Perm has a thriving restaurant and entertainment scene.
Every morning, your assistant will meet you, take you to the clinic and accompany you throughout the day as you go through all of the steps of your medical treatment. When there is time for a break, we are ready to take you to one of the many local cafes or restaurants. Or we are can help you place an order for food delivery, of course, following the recommendations for an anti-autoimmune diet from your doctor. At the end of the treatment day, we take you back home or if you feel adventurous and ready to explore the city we show you more of Perm. And there are places to see and visit: the scenic river walkway, the opera house, the famous pastry shop «Violet», the Kungur ice cave and many many more. Whenever needed, we will take you shopping. And if you are looking to get out on Sunday, your assistant can even take you to one of Perm’s churches.
How To Get Started?
Of course, every situation is unique. We are not calling this treatment a cure. At the same time, we are proud to be able to offer you a very real treatment that is likely to improve your general well-being and strength. If you are ready to join a growing number of IBM patients who have chosen to take action, rather than waiting for a magic pill, contact us or follow this link and learn how to get started.
For all our colleagues from the medical world, this blog piece was not intended to be a scientific paper for peer reviews. We simplified and adjusted the language for all people to be able to read and understand. However, our claims have their grounds which may be found via references. Many of the drugs listed in the article are patented in Russia and may not have ClinicalTrials.gov identification numbers. If you have any questions or concerns please do not hesitate to contact us directly. We are happy to collaborate for the benefit of a global community of patients with degenerative muscle disorders.
References
Greenberg SA. Inclusion body myositis: clinical features and pathogenesis. Nat Rev Rheumatol. 2019;15(5):257-272. [PubMed]
Griggs RC. The current status of treatment for inclusion-body myositis. Neurology. 2006. [Neurology]
Bliss TVP, Cooke SF. Long-term potentiation and long-term depression: a clinical perspective. Clinics (Sao Paulo). 2011;66(Suppl 1):3-17. [NCBI]
Cohen DA et al. Enhancing plasticity through repeated rTMS sessions: the benefits of a night of sleep. Clin Neurophysiol. 2010;121(12):2159-2164. [NCBI]
Ogawa M et al. Repetitive Peripheral Magnetic Stimulation for Strengthening of the Suprahyoid Muscles: A Randomized Controlled Trial. Neuromodulation. 2020;23(6):778-783. [PubMed]
Zschorlich VR et al. Repetitive Peripheral Magnetic Nerve Stimulation (rPMS) as Adjuvant Therapy Reduces Skeletal Muscle Reflex Activity. Front. Neurol. 2019. [Front. Neurol.]
Roy FD, Gorassini MA. Peripheral sensory activation of cortical circuits in the leg motor cortex of man. J Physiol. 2008;586(Pt 17):4091-4105. [NCBI]
Gariaeva N et al. Fundamental grounds for lymphotropic chemotherapy. Lymphology. 2017;50(Suppl):73-77.
Gariaeva N, Zavgorodnii I, Garyaev K. A case report revealing lymphatic drainage as a disease control mechanism over atherosclerosis. Lymphology. ISL XXVII World Congress 2019.
Gariaeva NA, Zavgorodnii IG, Garyaev KP. Lymphotropic therapy of atherosclerosis of carotid arteries. PPC NSMU. 2020(Vol 1).
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