New Immune System Treatments for Fibromyalgia Pain: Dr. Ginevra's Research Update #2
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- čas přidán 12. 08. 2023
- New ways to treat fibromyalgia are just around the corner! Recent research implicating the immune system in fibromyalgia pain should open many potential new treatment options. This video reviews published case reports on the immune-modulating drugs Tocilizumab and methotrexate in reducing fibromyalgia pain and discusses the potential roles of Rituximab and Bee Venom therapy. You can find study references below.
Learn all about the immune system and fibromyalgia pain here • New Research Reveals R...
About me: I graduated from Tufts University School of Medicine and am board-certified in internal medicine. After developing fibromyalgia in medical school I was able to find integrative treatments that helped me feel much better. I share my complete treatment approach in my book The FibroManual amzn.to/3Uql7wg
In my videos I hope to inspire everyone dealing with #fibromyalgia to remember they are #fibrofierce!
Sign for my email newsletter for all things #drginevra and #fibro at www.drginevra.com/
References:
Goebel A, et al. Passive transfer of fibromyalgia symptoms from patients to mice. J Clin Invest. 2021 Jul 1;131(13):e144201
Tang KT et al. Subcutaneous Tocilizumab May Be Effective in Refractory Fibromyalgia Patients. Biomedicines. 2023 Jun 21;11(7):1774
Omoigui S, et al. Relief and Resolution of Fibromyalgia Symptoms with Low Dose Methotrexate - The Origin of Pain is Inflammation and the Inflammatory Response Rheumatology 2014 4: (1)129
Sung SH & Lee G. Bee Venom Acupuncture Effects on Pain and Its Mechanisms: An Updated Review. Toxins (Basel). 2021 Aug 29;13(9):608
Li D et al. Preventive Effects of Bee Venom Derived Phospholipase A₂ on Oxaliplatin-Induced Neuropathic Pain in Mice. Toxins (Basel). 2016 Jan 19;8(1):27
Hi. I was diagnosed with fibromyalgia by 2 separate doctors back in 2012. I did use a wheelchair, walker,arm crutches and a service dog throughout my experience. Fibromyalgia effects us all individually.The symptoms started showing around 2003 while exercising a race horse on the track at a college. My limbs lost feeling and i couldn't grasp the reins and my horse took off on me. I had all i could do to hang on and the horse bolted to the barn thankfully and i had to have help getting off the horse because my limbs were not functioning up to par.I had to switch majors 3/4 the way through my Equine Science degree to a lesser Applied Science for general science. That way the degree can still branch out to other fields of science. The feelings of my limbs came back but super tingly and unstable. I started falling a lot and breaking bones.I started developing painful scoliosis in my spine which ive always had a super strong back from sports and work.I also have diagnosed mild epilepsy back in 1993 so i thought it was some kind of weird seizure or exhaustion before my diagnosis? Nothing could be done because the doctors could only see nerve damage and not the fibromyalgia at that time. So i was put on variousmeds over time which worked a little,made me worse,or didn't work at all and that was a long process.I was also diagnosed with severe IBS in 2006 after falling down a flight of stairs due to intense bowel pain and passing out at the college i attended.In 2018, i was diagnosed with celiac disease through a CDC DNA blood test with high sensitivity to shrimp after experiencing anaphylaxis during an ER visit. Also, the egg allergy i jave is only to eggs which the chickens that were fed gluten, so i look for grass fed/ gluten-free fed chickens.Now,2023, another disease showed up in my bloodwork a couple of weeks ago called Graves Disease. I eat a pretty healthy whole foods diet,no junk. Traded table salt for sea salt and the only oil i use is olive oil. My diet is super strict and necessary, no sugar,no chips,no sodas,no dairy,no gluten of coarse, no pork,no candy,no artificial anything.It took years to weed all of the junk out with corn being the last food i must stay away from. I'm still experiencing debilitating symptoms which still desturb my sleep as well. In 2019, i was diagnosed with DD/ASD. I also struggle with asthma at times. I just make sure if i go far to take my inhaler with me. With all of these health concerns on Medicaid and strict budget, I feel overwhelmed at times but thankful doctors are finding what is truly wrong and we are trying to keep me as healthy as possible. As of 2012,with a heavy heart,i had to make the decision to stop working as i obviously could not do, to get government aid called SSI. Its not much compared to what i used to earn but im grateful its there. It took a few tries and my lawyer helped me get it as i missed just a month to meet the SSDI standard of tax collection. I keep as active as i can by daily walks and stretching. Riding bicycles is still a challenge as i love riding but it debilitates my body,so I'll stick to walking. I try to jog a little but cannot remain stable for long and fall if i force my body too much. I did have a service dog to help retrieve items and help with seizure detection but he passed away from old age and a full and happy life at 16 and a half years young and on my income, i cannot afford another dog because of out of pocket food and medicalcosts and cuts. I live with my best friend who i call "sis" and we help each other through daily tasks. I like to rake leaves with a lightweight rake and vacuum the floors with my super lightweight stick vacuum. It may be small tasks now compared to the physical hard labour i used to be able to do,but it keeps me busy. As for hobbies, i like to draw and drum on my marching drum pad. I'm not trying out for DCI anytime soon but you never know😂 🥁. I hope this helps other sufferers work through this tough disease with a positive outlook to,thank you for the video💜
I am so sorry you have struggled like this for so long. It doesn't feel fair that you have had to deal with all of these things! ...I felt the same way several years ago. I have had fibromyalgia and chronic fatigue syndrome for about 12 years. I also was so frustrated and really discouraged about my life. I kept going back to my doctor and asking for additional help but he didn't know what to do. I prayed and asked God to show me what to do since no one seemed to know what to do to help me. God did show me what the solution was and is. There were other people suffering what I was going through and God showed me some people who had started getting better and feeling better.
Short story: Fibromyalgia and Chronic Fatigue are often related so I am going to assume (in my case) that they are a part of the same health issue that I was having. They started at about the same time. I found out that the key to understanding my health issues (where I was in bed most of the time for several years) had to do with my sleep. .....Let me explain.
People who have fibromyalgia and chronic fatigue have an underlying auto-immune issue related to certain nutritional deficiencies that prevent restorative sleep. At least this was my situation. These nutritional deficiencies often can't be discovered by simple blood tests because the problem is in the brain stem and not in the body's vitamin and mineral blood levels. Sometimes blood tests can show these deficiencies but sometimes they can't.
Here is the protocol I use to feel about 90%. When I wake up in the morning I try to get up about an hour before I really need to eat any food. I take a 3,000 mg packet of liquid liposomal vitamin C (sometimes I take 6,000 mg). You can find these packets on Amazon. The liposomal vitamin C tablets don't really work as well so you have to take the liquid liposomal vitamin C found in packets. Liposomal vitamin C packets (3000 mg packets) must be taken on an empty stomach so that it absorbs better into the body. These liposomal vitamin C packets boost my immune system and help me feel better overall.
After about an hour I eat breakfast and take these supplements 1) 1000 mg of Benfotiamine (Fat soluble vitamin B1). This is the most important supplement that you actually must take to feel better. You can get this reformulated B1 (look for Benfotiamine on Amazon). 1000 mg is a very high dose of B1 but your body is likely very deficient in B1. 2) Next take 6,000 to 10,000 mg vitamin D3. Also take 1 pill of a K2 supplement (the dosage of the K2 does not matter). B1 and D3 are the two supplements that will directly improve your symptoms. You must take high doses of both of these supplements. When I started taking high doses of both of these supplements everything started to change.
3) Take a multi-B supplement in addition to your B1 supplement. Many different B vitamins work together. Make sure your multi-B supplement has 50 mg or less of pantothenic acid. If your supplement has more than 50 mg of pantothenic acid in it, you will not be able to have restful sleep at night. 4) Take a prebiotic and probiotic of your choice. These supplements provide the body with certain types of bacteria that will help the vitamins and minerals work better. If you are frequently constipated also take Tudca. Tudca is a bile salt that helps improve digestion and this one supplement can aid your body in processing and absorbing nutrients. Your digestive system will work better.
Drink filtered water during the day (without Chlorine or Fluoride), eat a healthy diet, and avoid foods or medicines that deplete your vitamin B stores in your body (avoid alcohol, tobacco, drugs, sugar, junk food, etc). Eat organic as much as possible. It sounds like you are already doing this!
One hour before bedtime take these supplements. 1) Magnesium supplement of your choice (take 2 x the recommended dose on the bottle). Magnesium comes in several different forms so find one that doesn't upset your stomach. 2) Take a zinc supplement (take 2 x the recommended dose on the bottle). 3) Take a food-based iron supplement such as beet root powder. Food based iron supplements generally have much smaller particles of iron than the regular iron supplements found in pill form over-the-counter. This allows the iron to pass through the blood-brain barrier in your body and gives the brain the iron it may be lacking. Blood tests for iron deficiency will not show if there is actually a brain deficiency in iron so taking a food-based iron supplement is important. ...I take a beet root supplement and notice this helps my overall health. It is very noticeable to me. 4) Take a nascent iodine supplement. I take one called Detoxadine which you can find on Amazon. The bottle says that 3 drops is the regular serving size but often I take more when I start feeling symptoms come back.
Also try to lower your overall stress and realize that your body needs different things than the average person does. In my mind I often tell myself that my body "Burns through vitamin B1 (Benfotiamine) like a leaky engine burns through oil!" For some reason vitamin B1 (Benfotiamine) , vitamin D3, and magnesium are the only things that seemed to start changing my life-long health problems overnight. Liposomal C packets also helped my immune system act almost well again.
More recently I learned that people who have fibromyalgia and chronic fatigue generally have underlying sleep disorders that are hard to assess and eradicate. My sleep has greatly improved since taking these supplements. I sleep more deeply and I have been told that without deep sleep the brain and body are not able to repair themselves properly and so pain, tiredness, fogginess, are the result. This has definitely been my case. I have very little pain or achiness now and my sleep has improved. I feel like I can control my symptoms and I understand my body more now than ever. Most doctors don't understand the underlying causes of these problems.
Just a note: You might have an underlying infection. Why do I say this? Because when you don't have restorative sleep because of B1, D3, and magnesium deficiencies, your immune system suffers and your body has a much harder time throwing off viruses and infections. Once you restore your sleep so that your immune system works properly, you may find that you don't have any symptoms of infection.
Let me know if this treatment protocol helps you. If you have any other questions about why certain supplements are suggested I can answer more questions.
Much Love!
@crystallevin thank you and God bless 🙏
Thank you for writing this. I was just diagnosed with fibromyalgia and I suffered from it since my childhood. Now it got really bad, legs are weak, I get tired just from preparing food then after eating I need to sit down. I can't work out anymore and I'm scared because I don't want to become bed ridden. Your message really helps.@@crystallevin
Thank you so much for the updates and interruptions of the current research.
Thanks so much for your online help for us!! I have studied your book for about 6 years. It is very helpful
You're very welcome!
Told I had undifff connective tissue disorder along with fibromyalgia. Thanks for the wi rk you do
I listened to you videos with fascination. I have been diagnosed with fibromyalgia without my doctors really investigating properly. I asked for the blood tests you specifically say... my doctor told me there is no such thing as these tests and point blank refused me! She was VERY ignorant about what fibromyalgia is for a start. I tried to educate her. As usual, just ended in an argument. I'm following the carnivore diet and I'm starting to feel a lot better: lost a lot of weight which is annoying as I'm a gym goer but I don't feel so awful. Keep up the great work. ❤
Glad you have found some benefit! Sadly your experience with doctor is far too common.
Great update . Looking forward to anything you post
More to come!
I'm excited!!!!
Thank you for your work! You look and sound very fibro strong today!
Awwwh, thank you! I am getting fiercer every day as I recover from recent life setbacks.
@@DrGinevra I follow you and totally understand. You support us, we support you!
Thank you Thank you Thank you for your work and sharing about this ❤❤❤❤
You are so welcome
Thank you for you do for us!
My pleasure!
Great video
They say that LDN works as an immunomodulator in the other diseases they're using it for, the more "classically autoimmune" diseases. Has there been any theorizing that LDN is also working for FMS patients who are helped by it, by acting as an immunomodulator in FMS? I find it odd that LDN researchers shrug and say they don't know how it helps FMS, but I am grateful that they at least offer it to us.
I’ve dealt with the diagnosis of fibromyalgia for about 20 years. I’ve experienced anxiety all of my life. I’ve been more the exception of the rule in many ways.
Diagnosed with FMS in 2010. Suffered from long COVID for 2 years. Low histamine diet and ketotifen have been a life safer for me as it gave me the strength to keep fighting the medical gaslighting. Turns out I have hypogammaglobulinemia + specific polysaccharide antibody deficiency AKA Common variable immuno deficiency (CVID). I get 3 weekly IVIG and no longer bedridden. But the older I get the more issues from hyper mobility. So the immune system is definitely involved as is histamine intolerance ( ➡️ anxiety!!). Maybe some variants on the MTHFR genome.
When this first happened to me....long story......... I said 24 years ago, this pain is exactly like the HV and genital wart pain I had, where my legs would shake and scream in pain, like severe RLS....and so much more to the story........but, this is big, and about time!
HV virus apparantly can cause fybromyalgia
I took maharasanadi kadha ,and ayurvedic tonic,which healed pain completely.
For fatigue,neuroplasticity helped.
Pl try this
Am from India.
Which tonic ? What followed in neuroplasticity? Please guide, thanks
My immune system seems to work overtime. Except for having the Asian flu when I was an infant and a cold 8 years ago, I haven't been sick at all. With fibromyalgia I feel like I have the flu all of the time. I've taken everything from A to Z for the pain and nothing has helped, until a friend introduced me to kratom, and it's been a godsend for the pain.
What is Kratom
@kaylabryson1932
If you Google it, (kratom powder) you can find out more than I could put in a text. Not everyone will be able to take it. I'm so thankful that I am able to.
I am so tired of trying this and that and getting minimal results. Some days I wonder how much more of this I can do.
I was diagnosed with fibromyalgia in 2006. Six months before, I was cleaning in the yard and pushed my hand into a nest of red wasps(Polistes carolina). I had over 17 stings and have always thought their neurotoxins and chemicals caused my fibromyalgia! My doctor initially threw it out as a cause, but I still think this was a cause. Could I be right?
Do believe there is an autoimmune component with fibromyalgia. Symptoms significantly worsened once I discontinued prednisone for my lupus.
Dear doctor what treatment is there fore a person with fybromyalgia and von willebrands disease.
I have h & BP. I have mild MCAS and I get almost instant infections from any insect bite-mosquito bites I get huge red inflamed area. I have always wondered about immune drugs and I wonder if any studies have been done, I figured probably as not ever heard anything about them. I am a retired nurse and ran our community support group. I sure they come up with something. They think my EDS-hypermobility & MCTD is what started my Fibro up. I have always been a "bendy".
I have AS and sometimes think I have fibro. I don’t get cold I freeze, often my muscles when pressed on sting. I am more achey the joint pain.
Current estimates are that about 1/3 patients with autoimmune and inflammatory diseases like AS also have fibromyalgia. Definitely worth asking your doctor about it!
What about chronic fatigue syndrome please 😊
Any thoughts on Low Dose Naltrexone for use on fibromyalgia ?
Yes, LDN can definitely help in fibromyalgia with reducing central nervous system inflammation. Check out my video on low dose naltrexone here czcams.com/video/iDwouWXtztw/video.htmlsi=SoDDaAqv8NOgyr3o
@@DrGinevraThank you ! I also have Primary Evans syndrome and a host of other things I am hoping the LDN will help,,,,,,it's been a long road , and all uphill . Only one who suffers will understand !! cheers
I tried mexotrexate with folic acid. No dice.
Does it work? Thank you
I find that prednisolone lessens the symptoms of fibromyalgia and chronic fatigue. Sadly that comes with possible nasty side effects although I haven't had them fortunately.
Have you heard of this before?
Yes Dr Sarah myhill says this but says it's part with thyroid
@@Truerealism7471:07
I have Hashimotos . I think there is a link. Thank you
So if antibodies can transfer fibromyalgia should fibro patients be donating blood?
Great question! At this point there is no restriction to donating blood. The antibodies will be filtered out by the recipients body within a few weeks. It’s only if the body itself is continually creating those antibodies that symptoms would develop.
You mentioned LDN with opioids. Can you take both at the same time and what doses? Thank you
I've been told no. The LDN blocks the opioid from working
Nope apart from low dose tramadol
czcams.com/video/rK8rz19ySP0/video.html answers that very good question
Petrolia ontario name of clinic. Name of nursing home on murphy road sarnia ontario😊
Anyone else have a flare up after the vax?
Very little information
I can’t stand my clothing touching me!
Bras are the worst 😢