How Is It Treated
Facial palsy is treated with oral antibiotics and Lyme meningitis/radiculoneuritis can either be treated with oral or intravenous antibiotics, depending on severity . Most people with Lyme disease respond well to antibiotics and fully recover. Varying degrees of permanent nervous system damage may develop in people who do not receive treatment in the early stages of illness and who develop late-stage Lyme disease.
Uses Of Intravenous Immunoglobulin
IVIG is used to treat various autoimmune, infectious, and idiopathic diseases. IVIG is an approved treatment for multifocal motor neuropathy, chronic lymphocytic lymphoma, chronic inflammatory demyelinating polyneuropathy, Kawasaki disease and ITP. The beneficial effects of an intramuscular injection of immune globulin for the prophylactic treatment of patients with primary immunodeficiency syndromes are well established. The therapeutic effects of IVIG go beyond antibody replacement in those patients with antibody deficiency. The number of inflammatory and autoimmune diseases for which IVIG is used has expanded enormously. These diverse disorders range from blistering skin diseases to transplant rejection, neurologic diseases. It is widely accepted for use in persons with multiple other diseases including, but not limited to, Guillain-Barré syndrome, multiple myeloma, myasthenia gravis, acquired factor VIII inhibitor syndrome, autoimmune neutropenia, post-transfusion purpura, and polymyositis/dermatomyositis.
However, it does not work for all diseases for example, a Korean study of 63 patients with recalcitrant suppurative skin diseases reported that it helped 59% of patients, but with only a 20% success rate in treating hidradenitis.
Diseases that are purely of hematological or clotting factor defects such as Degos disease or paroxysmal nocturnal hemoglobinuria do not respond to IVIG.
Obstetrics: IVIG may be helpful for recurrent pregnancy loss.
What Are Side Effects To Ivig
Typically there are no side effects from receiving IVIG, but, of course, side effects are possible. Treatment is administered based upon the patients weight and would typically be one dose per month. This dose could be administered at one time, two times , four times in one week, or on another schedule. It all depends on what the patient can handle.
Studies show that about half of people may experience mild to moderate side effects. These side effects will typically happen during the first dose, so adjustments are able to be made for future doses and hopefully does not continue through treatment.
These are some side effects that can happen right away:chills, fever, flushing, flu-like muscle pains or joint pains, feeling tired, having nausea, vomiting, headache, and allergic-type reactions.
Its important to stay hydrated and helpful to take a Tylenol or Motrin prior to treatment.
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Tumor Necrosis Factor Antagonists
Demyelinating neuropathy is a rare adverse reaction to anti-TNF therapy, including adalimumab, etanercept, and infliximab improvement usually occurs after drug interruption and/or in association with usual treatments for demyelinating neuropathies .
During treatment with TNF antagonists in 67 patients, four had thrombocytopenia. The platelet count recovered after withdrawal in three patients and recurred after re-exposure in two. The overall estimated frequency of thrombocytopenia in this study was 4.3% .
Reactivation of hepatitis B virus has been reported in patients who are chronic carriers and who are receiving TNF antagonists . Use of these agents in patients with hepatitis virus infections can be associated with transient increases in aminotransferases but appears to be safe overall.
Cutaneous adverse reactions to TNF antagonists have been studied in 252 patients with rheumatoid arthritis and in 183 with spondyloarthropathies . Of the former, 11 developed psoriatic skin lesions and 10 granuloma annulare there were five cases of vasculitis, two of alopecia areata, two of discoid lupus erythematosus, one of lichen planus, and one vitiligo. Of the 183 patients with spondyloarthropathies, six developed psoriatic skin lesions, one developed granuloma annulare one lichen planus, and one alopecia areata there was one case of vasculitis.
A. Javed, B.G.W. Arnason, in, 2009
Enhancing Healthcare Team Outcomes
The onus for IVIG therapy’s success lies mainly in the treating clinician to achieve treatment goals, as every patient needs a unique and tailored infusion regime. The first and primary means of achieving this is by having a correct diagnosis, and this occurs through efficient interprofessional communication between specialists. More often than not, the diagnosis may fall on the category where off-label use of IVIG is required , and assessing the appropriateness of IVIG therapy must be balanced against the morbidity of the condition. Clinicians and other providers can accomplish this by staying up-to-date on the current guidelines from the authorities such as the American Academy of Allergy, Asthma & Immunology, the European Academy of Allergy and Clinical Immunology, and the World Allergy Organization. Recently available scientific evidence of IVIG use in specific disease trials or studies should always be used along with clinician’s experience to guide the decision on dosage, targeted optimal IgG levels, choice of IVIG product, and course of treatment and should be modified in a patient-centric setting. The choice of IVIG products needs special attention as the products are not generic and only a particular product, but not the other may meet the patient’s needs.
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Neurological Symptoms Of Early Lyme Disease
The onset of neurological symptoms can occur between one week and two months following a tick bite. In this early stage of neurological involvement, common symptoms have emerged. Meningitis from the Borrelia bacteria will present with nausea/vomiting, mild to severe headaches and a stiff neck. Light sensitivity and fever may also occur. However, meningitis caused by Lyme disease may be less severe than other bacterial infections so may be misdiagnosed as viral meningitis.
Encephalitis, or inflammation of the brain, can cause confusion, sleepiness, mood swings, personality changes or hallucinations. When the cranial nerves are affected in early Lyme disease, facial nerve palsy can cause muscle weakness or paralysis on one or both sides of the face leading to facial drooping. Additional cranial nerve symptoms include difficulty with eye closure, moving lips and smiling, and wrinkling of the forehead. Vision and smell can also be affected by cranial nerve inflammation.
Ivig Reduces Symptoms In Covid
Four years later, at age 64, she was diagnosed with COVID-19 pneumonia. She was treated with a 5-day course of hydroxychloroquine and azithromycin. She improved to near baseline within a week of treatment.
Two weeks later she experienced new symptoms such as severe leg pain with burning sensation at feet and hands, twitching and vibration feeling at her face, blurred vision, headaches, brain fog, forgetfulness, chronic fatigue, orthostatic dizziness and urinary incontinence but no weakness or dyspnea, wrote Novak.
She was diagnosed clinically with autonomic disease as the testing could not be performed due to COVID-19 related safety restrictions.
She improved with immunotherapy with IVIG. Immunotherapy successfully resolved her leg pain, brain fog, urinary problems, and blurred vision. Her headaches and chronic fatigue improved by about 50%.
Editors note: I would have questioned whether the autonomic dysfunction was related to COVID-19 or Lyme disease. Fortunately, the 64-year-old woman with a history of headaches, hypothyroidism, and autonomic dysfunction from PTLDS was able to recover from COVID-19.
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Treatment Of Chronic Lyme Disease
Damage to the peripheral and autonomic nervous system is common in late-stage Lyme disease. Numbness, tingling, burning and nerve pain experienced in peripheral neuropathy and radiculitis require effective treatment of the involved infections. Therapies directed at decreasing the inflammatory response by the immune system and repair of the damaged nerves is also part of the strategy when treating symptoms associated with chronic neurological Lyme disease.
Neuropathy is one of the most debilitating and challenging to treat symptoms of chronic neurological Lyme disease. Intravenous immunoglobulin therapy can be useful at reversing any form of neuropathy including CIDP caused by Lyme disease. The biggest hurdle in using IVIG as a therapy is the expense , so insurance coverage of this therapy is typically necessary. Often, criteria for health insurance approval is a positive nerve conduction study and a biopsy demonstrating small fiber neuropathy. Treatments are usually once per month, and it can take 6-18 months to see results.
Other therapies can also be helpful in treating the untoward neurological effects of Lyme disease. Work with a Lyme-literate doctor to determine the most effective therapies for the infection and subsequent immune-mediated inflammatory response that is causing your symptoms.
How Does It Work
Immunoglobulin is part of your bloodâs plasma. It has antibodies in it to fight germs or disease. When people donate blood, this part can be separated out. Then it can be given to you through a vein in your arm, or IV. If you get IVIg, it can help strengthen your immune system so you can fight infections and stay healthy.
Liquid immunoglobulin is taken from the blood plasma of donors who are screened to make sure they are healthy. The plasma is tested for serious infections like hepatitis and AIDS. The plasma is purified before it’s used for IVIg therapy.
During the therapy, prepared immunoglobulin is infused into your veins. A health care provider uses a needle to get into your vein. Then the medicine can flow from a bag through a tube into your arm. This takes about 2 to 4 hours.
You’ll probably go to an infusion center, hospital, clinic, or doctorâs office to get the treatment. Sometimes you can have treatments done at your home by a medical professional.
Typically you’ll have treatments every 3 to 4 weeks to keep your immune system strong. Your blood may break down about half of the immunoglobulin over that period, so you’ll need another dose to keep fighting infections.
Your IVIg dosage depends on how much you weigh. The standard starting dosage is 400 to 600 mg/kg of your body weight per month.
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Mom Credits Ivig With Turning Around Childs Powassan Infection
Three-year-old Jonathan Simonson, of Pennsylvania, contracted Powassan virus from a tick bite in June. In the following first-person account, his mother describes what happened next.
Oh June 15, Jonny was swimming in a neighbors pool when I noticed a small speck on his right shoulder blade. A tick. It was smaller than a pen point, not embedded or engorged. I removed it easily.
On June 28th, our daycare director called to say that Jonny was not himself. He was mopey, had no appetite and was complaining about a headache. It was really all of a sudden. That morning, he had been eating breakfast, playing with water guns and engaging in normal play.
Over the next two days, we noticed his symptoms got worse. We visited our pediatrician twice and were assured it was viral and needed to run its course. They sent us home with some supportive medicines.
We did not agree and took Jonny straight to the ER after the second visit. He had a fever of 104.3, threw up in the office and did not flinch when given a Tylenol suppository. We knew this was completely abnormal for our rambunctious little man!
Why Is It Used
Your bodyâs immune system normally makes enough antibodies to fight germs that cause infections. But if you have an immune deficiency, your body canât make enough of them. This puts you at greater risk for infections that could make you very sick. IVIg gives you antibodies that your body is not making on its own so you can fight infections.
In autoimmune diseases like lupus, the treatment may help your body raise low red-blood-cell counts. Not enough of these and you can become anemic and feel very tired. IVIg helps stop the white blood cells of people with lupus from destroying their red blood cells. In people with myositis, the treatment may block your immune systemâs destruction of muscle cells.
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How Long Does Ivig Treatment Last
Most patients will be on IVIG treatment for 6 months up to two years. Its important to monitor the patient progress while on treatment. There are many studies that show great success with patients using IVIG.
Some even call it liquid gold for those who are suffering chronically.
Heres a bit of an update on my health:
Yesterday, I had my autonomic function retested and learned that IVIG is likely my next step in my better health.
During the tilt test my blood pressure changed dramatically and I just about passed out. It was brief episode, but intense .
Last year, when I had this test, I did not have this reaction, but the biopsy revealed that I have Small Fiber Neuropathy and the autonomic testing showed I have Mild Adrenergic Failure with Transient Orthostatic Hypotension .I am currently not taking ANY
Yes, I said it, ZERO!
This time last year I was IV antibiotics along with 30+ daily supplements!
I understand that I may be heading back into getting further treatment, but this is okay.I will be okay.I have a fantastic support system and a lot of love to get me through it. I am SO much better now that I was before & I AM STRONGER THAN I KNOW.-Tommy
Cdc Shuts Off All Prolonged Antibiotic Or Immunoglobulin Therapy For Lyme Patients
According to the article entitled Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease United States:
These cases highlight the severity and scope of adverse effects that can be caused by the use of unproven treatments for chronic Lyme disease. In addition to the dangers associated with inappropriate antibiotic use, such as selection of antibiotic-resistant bacteria, these treatments can lead to injuries related to unnecessary procedures, bacteremia and resulting metastatic infection, venous thromboses, and missed opportunities to diagnose and treat the actual underlying cause of the patients symptoms.
The CDC told the Lyme Disease Association this morning that this article was provided to inform patients and providers so they can make informed decisions on this issue, since they felt patients were unaware of the dangers associated with IV treatments for Lyme diseaseit is for the good of the patient.
See LDAs Response on the issue:
MMWR article link to complete article
LDA May Lyme Awareness Blogs Begin May 1
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Pat Smith: Milestones in 47-year History of Lyme Disease & Her Story
Presented by PA Lyme Resources Impact SeriesMay 2022
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What Are The Possible Side Effects
Most people tolerate IVIg well, but side effects can include low-grade fever, muscle or joint aches, and headaches just after your infusion.
You might feel your best soon after your treatment, when the highest amount of immunoglobulin is in your body. As your body absorbs it , though, you may start to feel more weak or tired. You might feel your worst just before your next treatment.
If you have severe side effects from IVIg, you might be able to switch to another type of treatment called subcutaneous immunoglobulin therapy, or SCIG. You’d get shots with small amounts of immunoglobulin under your skin either once a week or every few days. Talk to your doctor about your treatment options.
Chronic Inflammatory Demyelinating Neuropathy
Chronic inflammatory demyelinating neuropathy may be an AIDP variant. The illness is characterized by progressive loss of motor and sensory function that evolves over many years. The process is roughly symmetrical, weakness of proximal and distal muscles predominating. Sensory dominant forms are uncommon. The onset is usually insidious without, unlike AIDP, any evident precipitating event. Some patients have a series of relapses prior to developing a progressive course. CIDP can occur at any age but is more common with advancing years. CIDP predominantly affects spinal roots, major plexuses, and proximal nerve trunks. The process is demyelinating, as readily documented by electrophysiologic testing. This reveals dispersed slowing of nerve conduction velocity. The spinal fluid protein is elevated, in keeping with leakage from damaged spinal roots. Tendon reflexes are usually lost.
The process is held to be primarily T cell mediated, but T cell reactivity to characterized myelin proteins is seldom found, and the putative antigen, or antigens, against which the T cell response is directed remains unknown. A role for antibody in CIDP has also been proposed since a small proportion of patients have antibody to the Po protein of peripheral nerve myelin.
Tulio E. Bertorini MD, in, 2008
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Case Study Pandas And Lyme With Ivig As Treatment
This case study emphasizes the need to investigate for tick-borne infections in patients with PANDAS and there is increasing evidence for the use of IVIG in autoimmune neuropsychiatric illness.
- Patients with chronic neuropsychiatric symptoms who do not respond adequately to traditional psychotropic medications may have an underlying immune-mediated condition triggered by one or more infections as evidenced in this case report.
- Improvement in neuropsychiatric symptoms does not typically occur unless all co-infections are addressed and resolved, according to the treating physicians clinical experience.
- The presence of elevated antineuronal antibodies identified by the Cunningham Panel provided an aid in diagnosis and in directing immunomodulatory treatment.
- The post-treatment resolution of these autoantibodies provided pathophysiological support for addressing both the infection and the underlying immune system dysfunction which resulted in a positive medical outcome for this patient.
- There is increasing evidence that IVIg and immunoglobulins are effective in treating autoimmune neuropsychiatric illness although the mechanism of action is uncertain.
Cross Amy, Bouboulis Denis, Shimasaki Craig, Jones Charles Ray. Case Report: PANDAS and Persistent Lyme Disease With Neuropsychiatric Symptoms: Treatment, Resolution, and Recovery. Frontiers in Psychiatry. Vol 12, 2021. DOI:10.3389/fpsyt.2021.505941
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