Happiness is…Total Recovery From Chronic Lyme Disease. IVIG Part Two

Happiness is…Total Recovery From Chronic Lyme Disease. IVIG Part Two

I ended Part One sharing my joy about riding and wanted to start with a small glimpse into my baby steps. I do this tongue-in-cheek to emphasize that we must not give in to the depression that holds us so tightly as the years go by and we are forced to watch the world pass outside our window. No matter how outrageous the dream or goal may be…break it into baby steps.

This is a picture of me just weeks before I crashed – accomplishing my dream of qualifying for USDF (United States Dressage Federation) Championships for Region 8 (all of New England including New York) at Prix St. Georges – a “test” that is part of the International standard of testing.  For an adult amateur, it was a very ambitious goal, and to actually win third place was beyond my wildest dreams!

To go from such a high to such a low can only be understood by others who have experienced Lyme.  The profound weakness…the excruciating pain, the emotional breakdown…I called it a flu, but it didn’t allow me to get out of bed, let alone ride (I was riding two horses daily at that time).  I couldn’t conceive of being sick for more than a couple days, or at worst a week.  Five years later so much has changed – from values to social interaction (or lack thereof).

I ended Part One sharing my joy about riding and wanted to start with a small glimpse into my baby steps.  I do this tongue-in-cheek to emphasize that we must not give in to the depression that holds us so tightly as the years go by and we are forced to watch the world pass outside our window. No matter how outrageous the dream or goal may be…break it into baby steps.

Guided  by a friend so I don’t fall off – in 2009.

Riding on my own with my pal in December 2011
How I feel when I am actually riding – not as often as I want, especially in the cold Maine winters!

“Thoughts become things…” as Mike Dooley has coined, “…make them good ones!” (I recommend signing up for Mike’s “Notes from the Universe” – they are free, funny and sometimes profound – delivered daily to your inbox, sometimes the note is just what you need to here to feel better about yourself!) Another tip: If you have a good day mentally but are still stuck in the wheelchair, try reading Lance Armstrong’s book, “It’s Not About The Bike”

Start with baby steps.

Back to IVIG which stand for Intravenous immune globulin, and refers to the fraction of blood plasma that contains “immunoglobulins” or “antibodies.” It is the backbone of our immune system.

Individuals who are unable to produce adequate amounts of immunoglobulins or antibodies, such as patients with chronic Lyme disease – and especially those with multiple co-infections, and those with X-linked agammaglobulinemia, common variable immunodeficiency, hyper-IgM syndromes or other forms of hypogammaglobulinemia, may benefit from replacement therapy with immunoglobulin.

It is important to understand that the immunoglobulin that is given partly replaces what the body should be making, but it does not help the patient’s own immune system make more. Unfortunately, the immunoglobulin only provides temporary protection. Most antibodies, whether produced by the patient’s own immune system or given in the form of immunoglobulin, are used up or “metabolized” by the body. Approximately 1/2 of the infused antibodies are metabolized over 3 to 4 weeks, so repeat doses are required at regular intervals.

Depending on the route of administration, this may be done by giving small infusions under the skin as often as every 2 or 3 days, or larger intravenous infusions once every 3 or 4 weeks. Since it only replaces the missing end product, but does not correct the defect in antibody production, immunoglobulin replacement is usually necessary for the patient’s whole life.

B-lymphocytes mature into plasma cells, which manufacture antibodies and release them into the bloodstream. There are literally millions of different antibodies in every normal person, but because there are so many different germs, no one person has made antibodies to every germ. The best way to ensure that the immunoglobulin will contain a wide variety of antibodies is to combine, or “pool”, blood from many individuals.

To commercially prepare immunoglobulin that can be given to patients with a primary immunodeficiency, the immunoglobulin must first be purified (extracted) from the plasma, or liquid part, of the blood of normal healthy individuals. Donors are screened for travel or behavior that might increase the risk of acquiring an infectious disease. All immunoglobulin licensed in the U.S. is made from plasma collected in America. The blood or plasma from each donor is carefully tested for evidence of transmissible diseases, such as AIDS or hepatitis, and any sample that is even suspected of having one of those diseases is discarded.

Plasma is collected from tens of thousands of donors, and then pooled together. The first step in immunoglobulin production is to remove all the red and white blood cells. This is frequently done right as it comes out of the donor’s arm by a process called plasmapheresis, which returns the red and white cells directly back to the donor. Then, the immunoglobulins are chemically purified from the liquid plasma in a series of steps usually involving treatment with alcohol. This process results in the purification of antibodies of the immunoglobulin G (IgG) class; only trace amounts of IgA and IgM remain in the final product. The purification process removes blood proteins other than IgG and is also very effective at killing viruses and other germs that may be in the blood.

There are now several immunoglobulin preparations licensed in the U.S. for intravenous (IV) use. For the most part, the products are equivalent in antibody activity. However, there are some minor differences, which may make one particular preparation more suitable for a given individual. Most of the products that can be given intravenously contain some type of sugar or amino acids which help preserve the IgG molecules and prevent them from sticking together to form aggregates, which can cause severe side effects.

Although these additives are harmless for most people, some of them may cause problems for specific individuals. Your doctor is your best source of information about which product is best for you. IV infusions are usually given once every three or four weeks. This results in a very high “peak” IgG level in the blood right after the dose is given and may leave a relatively low IgG level in the blood at the “trough” just before the next dose is due.

Purified immunoglobulin has been used for nearly 50 years and has an excellent safety record. There has never been a case of AIDS due to the use of immunoglobulin. However, in 1993, before we had good tests for the presence of the Hepatitis C virus, there was an outbreak of hepatitis C associated with one of the immunoglobulin preparations. Since that time, all immunoglobulin preparations are treated with special steps which are included to specifically kill viruses such as the AIDS virus and the hepatitis viruses. Some processes treat the immunoglobulin with solvent and detergent to dissolve the envelopes of the viruses. Others pasteurize with heat or use acid treatment to kill them. These methods have been shown by FDA tests to destroy all AIDS and hepatitis viruses, and most manufacturers now perform several of these steps on every batch to make the chance of any virus getting through as low as possible.

Most patients usually tolerate the intravenous immunoglobulin products very well.

They can be administered either in an outpatient clinic or in the patient’s own home. A typical infusion will take two to four hours from start to finish. Some patients may tolerate certain preparations more quickly, while others may take longer to receive their dose of IgG. Use of intravenous products allows physicians to give larger doses of immunoglobulin than could be given intramuscularly. In fact, doses can be given that are large enough to keep the IgG levels in the patient’s serum in the normal range, even just before the next infusion when the level would be lowest.

Most patients have no side effects from the IV infusions, but sometimes low-grade fever or headaches occur. These symptoms can usually be alleviated or eliminated by infusing the immunoglobulin at a slower rate and/or by giving acetaminophen, aspirin or other common medications an hour or so before infusion. Less often, patients experience hives, chest tightness or wheezing. These symptoms usually respond to antihistamines such as diphenhydramine (Benadryl™) and/or asthma medications like albuterol.

As in my case, headaches may occasionally be severe, especially in patients with a history of migraines. These headaches may occur during the infusion or as long as three to five days later. I use Benadryl successfully, plus Excedrin “Migraine” and ice if the headaches get really bad.

Some with the more severe and persistent headaches have been found to have an increase in the number of white blood cells in the cerebral-spinal fluid, which surrounds the brain. This is known as aseptic meningitis. The cause of this apparent inflammation is not known, but it is not an infection and patients have not had permanent injury. It is bothersome, and usually requires treatment. In some patients merely changing brands of IVIG will eliminate the problem. In some cases, it is necessary to treat with a steroid, before, during, or after the infusion. You should notify your doctor if you experience headaches that do not respond to standard medications such as acetaminophen.

The dose of immunoglobulin varies from patient to patient. In part, the dose is determined by the patient’s condition and weight. It is also determined by measuring the level of IgG in the patient’s blood at some interval after infusion, and by determining how well a given dose of immunoglobulin treats or prevents symptoms in an individual patient. Studies have shown that patients with chronic sinusitis and chronic lung diseases such as bronchitis do better when given higher doses of immunoglobulin. Some patients, who lose IgG molecules from their digestive tracts or kidneys, may require more frequent doses.

It is important to remember that although our current immunoglobulin products are very good, they do not duplicate exactly what nature normally provides. The manufactured immunoglobulin is almost pure IgG, so essentially no IgA or IgM is transferred to the patient. The specific protective functions of these immunoglobulins are therefore not replaced.

Gaining a diagnosis for autoimmune deficiency or CIDP (Chronic Inflammatory Demyelinating Polyneuropathy  is an acquired immune-mediated inflammatory disorder of the peripheral nervous system. The disorder is sometimes called chronic relapsing polyneuropathy and is the opposite of autoimmune deficiency) with respect to your chronic Lyme disease can be a full time job and quite intimidating when most medical doctors want to throw you in a loony bin as soon as you mention chronic Lyme.

It is much more “politically correct” to use the term Post-Lyme Syndrome and for some reason easier to swallow by mainstream doctors but it is the same disease.  So finding a Lyme-literate neurologist or immunologist, and having your immune system thoroughly evaluated is the critical first step.  Read Part Three for the next steps.

(Originally posted on July 27, 2011 – Updated December 2011)

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5 Responses to Happiness is…Total Recovery From Chronic Lyme Disease. IVIG Part Two

  1. David A Martel says:

    Hello I was diaganosed with lyme about 4 years ago and my joints are ok a little stiff but the real issue is my head. I have this crazy head buzzing and pain. My memory is crap and I don’t get a lot of sleep. I am in KY for work and looking to get some info on treatment. I am from Vermont and they do not see lyme as a issue and will not treat it.
    I am schedueled to see a neuroligest on 09/25/12 and I am hearing a lot of good news about the IV IG but can not find anyone to prescrib it.
    If you like you can call me this weekend my cell is 802-399-0559. Or you can e-mail me.

    Thank you
    David A Martel

  2. Kirsten says:

    Hello! Thanks for this blog. I have chronic lyme and have been seeing a LLMD and treating for 1 year with very little improvement. I just found out that my IgG levels are low, the overall total and subclasses 1 and 3. My LLMD wants me to see an immunologist, but doesn’t know of a good one that may be “open” to chronic lyme. Do you have any recommendation? I live in OH, but will travel to see a good immunologist that won’t treat me like I’m nuts, lol!

    • Jenna Smith says:

      Thanks for your comment Kirsten –

      I need to update this post on IVIG…yes, it helped me SO much, but afterwards all my markers slid back to exactly where they were beforehand and even with Medicare paying the lion’s share of the cost, we were still stuck with over $12,000 in bills which we can’t pay! I should have kept track of what was being covered but I can’t deal with mail anymore and it tends to pile up…so I am still dealing with that years later. I suggest taking supplements to boost your immune system in conjunction with a strong killing protocol and a biofilm busting protocol. I will soon release a special ebook with new strategies for making a full recovery.

      Another thing to think about is that most of us with chronic Lyme get worse before getting better…sometimes sliding sideways for months before turning a corner. Don’t give up! One year seems like forever but depending on how long you have been infected, it may take years to recover. Just be prepared and live one day at a time…and try not to burn any bridges. I hope this helps – I am happy to give you more specific ideas if you wish but your LLMD is your best bet.

      Blessings,
      Jenna

  3. Jamie says:

    Hi!
    Are you still doing Ivig? If so, has it been worth it? If you are no longer doing it, did you benefit greatly from the treatments? I’m very interested in Ivig.
    Thank you!

    • Jenna Seaver says:

      Hi Jamie –

      Thanks for writing! No, I am not on IVIG anymore. You can read all about my experience and new protocol on http://lymediseaseresource.com/Jennas_Treatment.html. It was very expensive and within just months my immune system was just as bad as ever… after 9 months of infusions every 3 weeks I almost had to go through bankruptcy again even with Medicare! If your insurance covers all of it you might want to do it while you are doing other treatments to kill the infection/infections, kill parasites and dissolve biofilms. It definitely made me FEEL better but it didn’t help my energy.

      I am currently in the process of updating both websites (lymediseaseresource.com and neuro-lyme.com), especially my treatment page as I recently had the honor of speaking to Dr. Cowden about my condition and learned so much! I want to share this info with all my readers but have been very distracted with my move to Florida. If you are on my mailing list you will get a blog post about my conversation with Dr. Cowden in the next few weeks.

      I hope you haven’t had Lyme for too long because it certainly is easier to recover the shorter period of time you have been sick.

      Thanks again for reaching out!

      Be well,

      Jenna

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