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

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

We all want total recovery, not these percentages you read about….we want it GONE!

Now that I am truly on the road to recovery, I am eager to share my experiences, with the clear understanding that we are all different and what is working for me may not work for you.  The key is to keep trying – never give up and cling to those good days.  Whatever you do, DON’T ignore it hoping it will go away!

After bumping along on the bottom in spite of many false hopes and wild gyrations in between (the roller-coaster ride – you know what I am talking about), I was diagnosed as immune deficient last year and began IVIG infusions in October of 2010 every 3 weeks.

I was originally diagnosed and prescribed this treatment by Dr. Katz in Orange, CT who has been very successful in helping people recover from Lyme using IVIG infusions, however, he is the first person to say that IVIG is not a protocol for chronic Lyme disease.

Are you confused yet?

I am not a medical doctor, so I can only share my experience and report on what I have researched.  Ironically, the only post on Dr. Yaller’s blog this year (excellent LLD in Germantown, MD) is entitled, “Immune Disfuntion and Antibiotics”that helps explain what happens to the immune system when you have Lyme disease (and you can imagine far worse consequences with multiple co-infections.)

I am finding that many people are afraid of the IVIG infusions.  If you picture your immune system as an army to protect your body from invaders, and imagine all of the great and small pathogens that wear down our body and demand immune response, then add to that lack of sleep, over-programmed lives, stress overload, improper diet, pollution, allergies, heavy metal poisoning…our bodies have become little toxic waste dumps with our immune systems running on empty.

Some people with Lyme disease have an over-active immune system that will attack the body and cause additional physical problems, some of which can be life threatening.  So the first step is getting a complete evaluation by an expert immunologist or neurologist on the condition of your immune system.

If your immune system is compromised – and it doesn’t necessarily need to be by that much if the condition has been persisting for many years – then a systematic plan needs to be put in place to jump-start and permanently strengthen your immune system so that it can better battle your chronic Lyme disease and co-infections.

I have waited since November to write this post so that I could give a thorough report of the consequences of my strategies – including some independent decisions I made that backfired in a bad way (but taught me a lesson I am happy to share.)

Every three weeks, I felt my energy increase.  A side effect of the infusion is a throbbing headache – my first one last 3 days – as bad as my worst migraine – but with lots of water and Benadryl (doctor’s orders), the headaches became less severe until they are now almost completely gone (I take Excedrin Migraine at the first hint of the throbbing and it dissipates.)

The energy level built slowly.  A few good days with the rest comatose in bed because I tried to do too much while feeling good for the first time in so many years.  As the months passed and the cold Maine winter passed, I found I could spend more time outside walking, mucked stalls and filled water buckets for the first time in five years (OK, it took me ten times longer but I was on my feet doing it!), and in the last few weeks, having found help for the chores, I am able to use the blossoming energy to actually ride my horses – not a one day celebration being lead around on a line, but holding the reins in my hands and trotting – even cantering my huge warmbloods – without any fear!  Yes, I have a long way to go to regain my stamina, muscle tone, independent muscle control, strength…but my dreams are coming true!

Your dreams can come true too!

(Originally posted on July 27, 2011)

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12 Responses to Happiness is…Total Recovery From Chronic Lyme Disease. IVIG Part One

  1. Meri says:

    Jenna, you are a GODSENT!! your blog is so precious to me and so well done. I cant thank you enough.
    Among many other symptoms, my biggest one is that I lost feeling in both my legs due to lyme disease (it gave me brain lesions) and I am terrified at using IVIG. Ive been thru 6 months of iv abx and now the doctor is recommending IVIG BUT I am NOT immune deficient, so I am trying to read as much as possible before actually doing it. Do any other people that write to you have benefit from this without being immune defficient?
    God bless you, you inspire me and I am sure many others!!! thanks so very much, looking forward to feel better and be able to take pictures as wonderful as yours!

    • Jenna Smith says:

      Hi Meri –
      Sorry it took me awhile to respond! No, I have not read where it has helped people without immune deficiency other than to increase energy but it is VERY expensive! You are better off going to Dr. Sponaugle in Florida or Envita Center where they have experience helping people lie you recover. It is expensive but the testimonials are tear-jerkers!

      Please be well Meri…

      Blessings,
      Jenna

  2. Carlos Aguilar says:

    Hello Jenna,

    Thanks for the blog. I’m looking forward to doing IV IG. However, I’m not just immune deficient because of possible lyme and co infections, but also because I take 4 mg of medrol per day for the past 3 years. I know steroids are a huge no no but it was given to me because i was bedbound for almost 8 months. The steroid did help me eventually get up and going but it also has caused a severe muscle wasting and connective tissue wasting that is annoying. It’s like i don’t suffer from pain at all and never have. I don’t take the steroids for pain, i take them for hormone therapy, to raise my cortisol. I too am working with a dr in orange county but to protect my doc i will not mention any names. I am definitely immune deficient. I want to get off the steroid medrol and thats the whole point of trying this IV IG. How are you doing these days? Did the IV IG work after all this time? Are you still taking it?

    • Jenna Smith says:

      Hi Carlos –

      If you have Lyme the steroids will make you worse – short term relief for long term horrors! But IVIG is very expensive unless you have insurance that pays 100%. It wiped me out again! But it did help while I was on it I felt great! As soon as I was off my immune markers dropped back to the levels before. They didn’t start to rise until I started taking Propax NT at the advice of my LLMD and megadoses of Vitamin D. Then adding Maca gave me more energy so I was able to tolerate a strong killing protocol for my Borrelia and co-infections. Taking Serrapeptase has also been critical for my recovery.

  3. Angel says:

    My daughter has lyme and we have been treating with iv antibiotics for a year with 8 more mo ths to go. She is very weak from treatment. Also, she has a double mthfr mutation. Do you have that? I would like to see if ivig would help her, but I didn’t know if it would be ok with that mutation. Any advice you can give us would be great.
    Angel

    • Jenna Smith says:

      Antibiotics will cure whereas IVIG will boost immune system so both are important. I have had both and it is not easy to say just what treatment was the most important to get me out of bed and on my way to full recovery (still not there yet), however, Therelac probiotic is SO important to protect intestinal health – she can’t skip one day. Parasite eradication is CRITICAL, also without biofilm eradication she will never fully recover (Prohealth has a great price on Nutramedix Serrapeptase – I take 4 capsules daily with ABX) and B Complex for energy – I actually take lots of supplements but I’m 53. Your daughter should bounce back faster as her immune system is probably not as bad as a 20-plus year chronic case like mine. It seems like you have a good LLMD so stick with he or she. It is tempting to second guess when it takes so long to recover but that can be due to co-infections also.

      Sorry I don’t know anything about the double mutation…but I hope she finds full recovery!

      Blessings,
      Jenna

  4. debbie heverly says:

    did you have solumedrol administered along with the IVIG? My daughter is due to start IVIG on wed.(for chronic lyme and hypogammaglobulinemia) and one doc recommends solumendrol and one does not – so I’m hoping you will share whether or not you had solumedrol (versus just benadryl, tylenol and an epipen if necessary) thank you!

    • Jenna Seaver says:

      Interesting question – I am not sure but I think it was straight IVIG – I know I always suffered from headaches and ended up frequently taking Benadryl on my own. But as I said, in the end it just put me deeper in debt and improved my immune system only temporarily. I hope your daughter finds a more lasting cure from her treatment. I would love to hear how it goes!

      Blessings,
      Jenna

  5. Tracy says:

    Hi, Jenna!

    My son was diagnosed with Post Lyme Autoimmune Syndrome last night by Dr. Amiram Katz, who you saw. It’s been a very long process to get this far and he’s probably been dealing with this for about 7 seven years. He was also told he had Babesia, and he’s been dealing with Crohn’s disease for 6 years. We were treating the extreme anxiety and depression and Crohn’s, (with remicade) but nothing ever changed, he had no relief from the neurological symptoms. Many doctors kept prescribing anti-depressants, and nothing worked. My son kept thinking he had the power to get through this, blamed himself, felt guilty for feeling bad every day. Until we met Dr. Katz we were running in circles.

    He is now getting penicillin injections and the next step I was told was immunoglobulin treatment. What I’m wondering is how long it took you to start feeling like yourself? My son can play sports and workout, but it’s the neurological symptoms that are the most painful, it’s like he’s watching his life go on and is not part of his life. He feels removed from himself and can’t remember or connect to who he used to be before the disease. Any contact with people causes anxiety and stress. However, you’d never know this to meet him. I’m wondering if you ever felt this way? Any information on relief that you felt from the IVIG would be appreciated. This is a new direction for us and I’m just trying to anticipate the reality, given every patient is different.

    Thank you,

    Tracy

    • Jenna Seaver says:

      Hi Tracy –

      I am glad Dr. Katz is treating your son aggressively. He did not want to treat me long distance when my heart started causing problems, but the IVIG did help with energy while I was on it however, as soon as I got off my numbers dropped (not as low but almost as low) – I did not befin to recover steadily until I started on 2 grams of penicillin daily and I have been on that over 2 years and continue to feel better each month. The IVIG gave me hope at a time I really needed it but it ended up just layering on major debt and stress without a permanent solution however I have had this and other tick-borne diseases for decades. Dr. Katz has been credited with helping many recover to a normal life. I believe it is possible but I am still not there yet…getting closer every week.

      God bless,
      Jenna

  6. Jim Ford says:

    Hello Jenna, I don’t know where to start. I’m 53 andI tested positive six years ago for Lyme after feeling a little fluish and sluggish. It was a walk in clinic. Dr. gave me 7 days of amoxacillan and that was it. About 8 months later the nightmare began. Couldn’t get enough sleep, crazy headaches, face numbness, joint aches, night sweats, tremors, body shocks, fogginess. I was no longer testing positive for Lyme and the Dr parade began. Hematologist, Neurologist, orthopedist, psychiatrist, Rheumatologist……..going from Dr to Dr and getting nowhere. Four years ago I collapsed at work, I couldn’t stand up because the symptoms just owned me. I got to a lyme literate Dr who put me on Rocephine in June 2012. I was certain I would be dead by 4th of July. After 4 months on the Rocephine, I was doing better (By the way I have been on and off of Doxy and for the past 6 years also) but far from great. I am a health and PE teacher I was 255lbs 6’6″ tall when this began and I have been as low as 205lbs. I did not work May and June 2012 but went back to work that September. I have great insurance but they managed to leave me on the hook for 20K in medication. The next year 2013 was like a roller coaster. The symptoms rolled in and out. I kept searching for Dr.s and answers but was going nowhere fast. I began taking anti depressants condemned to a life of doing what I absolutely needed to do but nothing more. My blood work was sent all over the country and came back inconclusive always. The feeling was, if it is inconclusive it has to be there but nobody had any answers or would treat it and I couldn’t shell out 20K every 4 months for rocephine because the insurance company deemed it “dangerous” even though it was prescribed by an in net work Dr. In March of 2014 I began to have this incredible upper abdominal pain and had every test known to man but nothing came up so now they added oxycodone. On April 30 i went to the ER…one of many trips with excruciating pain. The surgeon came in and said my appendix didn’t look infected but it didn’t look right so they took it out. (I should tell you I live on eastern Long Island and have horses and dogs in the middle of tick central) A week after my appendectomy the hospital called to tell me that when the Dr cut out my appendix, he cut through a tumor he did not know was there. So the question was what was left of the tumor and where did the cells of the tumor wind up in my abdominal cavity. Again I was out of work May and June I went to Sloan in NYC and New York Presbyterian. On July 3rd they took out 18″ of my colin and did an open Chemo. I spent 3 weeks in the hospital recovering from the surgery while they also looked into the Lyme. I went home and somehow pulled myself together and went back to work again. I maintained, just existed barely back in the cycle of symptoms rolling in and out. In January 2015 it seemed the symptoms were increasing again. I slept a lot…12 hours a day and all weekend and it was never enough. I got through the school year and went to visit my sister in Colorado. It was a very relaxed trip but on day 4 of a 7 day trip it was like somebody flicked a switch. I was back to where I was in June of 2012. The pain in my joints and muscle cramps were unbearable. I got hooked up with a neurologist at NYU and he did a nerve and muscle biopsy, and EMG and a lumbar puncture. This has all become an immune disease now being called CIDP. My nerves in my legs are falling apart. I have no reflexes in my ankles and my knees are just about gone. There is nerve damage in my spine and small clusters on a brain scan. This Dr. is out of network for insurance and has cost me over 15K The insurance refuses to pay the 80% they are supposed to because they claim his fees are not usual and customary but they have approved and are paying for the meds. He put me back On IV Rocephin for a month. In my spinal fluid they found new bands of Lyme they have never seen before. My Igg and Igm are the lowest he has ever seen. There are also other peculiar findings but the scariest one is HHv 6 virus which is a type of herpes virus but more in the line of shingles. The can’t tell if it has been dormant since I was a child or was this passed on by a tick. Being that it has shown up in spinal fluid he was guessing the tick. Apparently this is a new problem that has arisen across the country. I had my first test dose of IVIG at NYU last night. I will receive 40 grams a week for 6 months but it is likely I will be on it the rest of my life. I can’t believe it but the insurance company is paying for it. 40 grams a week that takes 5 hours to go in and a nurse must be at my house for the administering the drug. Jenna if this doesn’t work I will have to go out on Permanent disability and if I have to do that I am done. If anybody has any questions please ask. I know I went long but I really didn’t even go into the effects this has had on my work and family. Hang in there everyone and thanks for listening. Jim

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