IVIG Treatment
December 28, 2016
Lyme & Tick Borne Disease Patient's Experiences
Original Post
Q- Just returned from consultation regarding acceptance into IVIG treatments. I've been diagnosised with CIVD (common immune variable disorder.)
I have been told by my LLMD that without IVIG treatments, I would never get better.
My immunologist said I was a PERFECT candidate and sent referral, blood tests, and office visit notes.
But at today's consult, they said I would have to halt all my Lyme antibiotic treatment and recieve a Pneumovax vaccine. I would wait 4 weeks after the shot and have blood work draw to determine if my immune system produced antibodies.
I refused the vaccine until I cleared it with my LLMD. When I returned home, I called LLMD but the office is on holiday until the second week of January.
They also said the vaccine wasn't a live vaccine so I couldn't get sick from it, yet they said they would prescribe me Bactrim for 4weeks.
So I asked them why I would need Bactrim. And they said I have no antibodies for pneumonia. 0 out of 23 antibodies titters from recent blood work.
I look and feel like the walking dead.
They also said NO insurance company will approve of IVIG treatments unless this necessary step is taken first.(vaccine).
Any input appreciated.
Multiple Responses
A1- I would just take antibiotics and not tell them you're doing it. Abx has nothing to do with viruses and you can certainly get sick with a virus while you're on antibiotics.
A2- It's really too bad that your LLMD is on vacation for now, as you should get his/her input.
HOWEVER, there are several indications for IVIG, one of which is small fiber neuropathy, which many people with Lyme have, although not everyone knows it. To see if you have SFN, you would get a punch skin biopsy to test to see if you have reduced nerve fibers. They now can also test to see if you have autonomic nerve fibers affected, too, via nerve fibers affecting the sweat glands.
If you do have it, and the likelihood is good, the protocol would be IVIG at a greater dose and at a greater frequency. You would have to find a doctor that does that test, which, hopefully, your LLMD knows. Or you could also ask your local Lyme group (via online or in-person group) who does that test nearby, someone who is Lyme-friendly, hopefully. I know who is good up north, but not down in FL.
So, either you can wait and do that test, or you could do what Jordana suggested. If I were you, I would leave a message, or email, your LLMD's office to see if they have anyone monitoring for important questions, like this, while they are on vacation.
Going without your abx for that long, while exposing yourself to the pneumonia vaccine is worrisome for people like us; many have gone through the same situation.
Try to see if you can get a message through to your LLMD's office; surely there must be some on-call phone contact (I hope!).
sammy has gone through this, so she may have some input on this, too. (I hope it's ok that I said that!).
A3- I don't know the answer to your questions, but I do know that my daughter's immunity was low and she got the Prevnar vaccine last Feb.
She had terrible arm pain from it that lasted over two weeks. I do think they need to prove whether your numbers can rebound with this?
She was on Amoxy for three months afterwards (to "protect her" since she had low antibodies) before she was retested. At that time though we have moved on from Immunologist and were seeing LLMD who felt co-infections were the cause of her issues.
She conts. to have lower immunity, but was able to maintain a lot of what was provided by vaccine.
A4- Have you shared your IgG and IgA levels somewhere here?
I've read if your IgG is <200 no vaccine challlenge required.
Otherwise - yes - one needs to do the VC to get approved.
I did the Pneumovax 23 and HiB.
I'm sensitive to everything and did fine with the vaccines. I failed the Pn23 but passed the HiB. Apparently the Pn23 is the most important one to fail to qualify for Gamma replacement.
So I qualified for IVIG/SCIG.
To mention: IIRC there's a theory that those who respond feel sickly after the vaccines. Those who don't respond don't. Makes sense if the immune system doesn't react.
Some insurance companies - and doctors? - require a VC for viruses - like tetanus.
The Pn23 and HiB are for bacterial pathogens.
I'm not sure if taking your Lyme Abx would effect the challenge one way or another. ie "help" you pass or fail.
I assume you want/feel you need to be on IVIG/Gamma replacement - thereby needing to do the VC and fail it.
Someone mentioned taking your Abx anyway - not telling. You could do that - probably anyway fail the VC and get what you need.
If you passed - ask to get the post vac. titers retested. Off Abx for a month to do so.
If you had zero protection on your Pn23 pre vaccine titer test - I have a feeling you would fail the Pn 23 VC. Just make sure it's the Pneumovax 23 and get it documented.
Hope this helps.
A5- Think perhaps about your insurance coverage. It is not a sure thing if you get the vaccine and meet the criteria that you will be approved.
Since it is a life-long treatment that will need to be re-evaluated ever so often, that is another consideration. Insurance could insist you go thru the same procedure over and over again and can deny it at any time for no reason at all.
This organization, Immune Deficiency Foundation, has a patient advocate you can speak with about your treatment and insurance issues, and a list of FAQ.
http://primaryimmune.org/services/patient-insurance-center/
A6- Columbia states:
Mild infusion-related reactions occur often but these can often be controlled by slowing the infusion rate or by symptomatic medications.
Serious adverse effects, although rare, may include thromboembolic events (esp among patients with pre-existing vascular disease), renal failure (among patients with renal insufficiency), anaphylaxis (esp among patients with IgA deficiency), or septic meningitis (especially among patients with migraine).
Patients with these risk factors should carefully discuss the risks and benefits of IVIg treatment with his/her physician. At this point, given the lack of systematic or controlled studies, IVIg for Lyme neuropathies is an experimental treatment.
http://www.columbia-lyme.org/patients/ld_treatment.html
It is not a cure all. Even when successful you can still have symptoms and/or damage.
http://www.beyondthebite4life.com/2015/06/hope-for-healing-ivig-and-chronic-lyme-disease.html
A7- Small fiber neuropathy is not a condition that is approved for IVIG. You have to have a specific autoimmune condition (for instance Sjogren's Syndrome) along with the small fiber neuropathy.
A8- A post dated today about IVIg. I haven't read it yet, but thought it MIGHT be helpful? Hope so!
http://davidsyounger.com/blog/immune-globulin-therapy-overview-and-recommendations-new-patients
A9- You've just been diagnosed with a life- altering Immune Deficiency (CVID), you probably feel stressed and overwhelmed by the whole situation.
I also have CVID and have learned (the hard way, from experience...) that you really must complete the Vaccine Challenge if you are needing to be evaluated for a Primary Immune Deficiency.
Insurance companies are notorious for challenging diagnoses. If you do not have ALL of the standard requirements, they will deny your treatment request.
Insurance Co's are difficult to please. They may even force you to stop the IVIG for at least 3mo to "see how sick you get" then have you rerun many tests again each month for another 3mo to prove your diagnosis. (That happened to me, I had more than enough proof for my diagnosis. Insurance Co decided to see if my condition was temporary...)
Insurance Co's typically require IVIG recertification every 3-6 months to evaluate your current state of health. This includes immunoglobulin titers but you will NOT have to repeat the vaccine challenge once done completely. (Even if you change insurance groups, your tests will follow you!)
Back to the vaccine challenge I was given the Pneumovax, Prevnar, and Hib vaccines. (Not all of those are required but they are helpful with diagnosis and special treatment. Some immune deficiencies only show up with the vaccine challenge...)
My (very well known and highly respected) LLMD assured me that the vaccines would not cause my Lyme to relapse or get worse. All I felt afterwards was 1 slightly achy arm after 3 shots! No other noticeable effects!
The vaccine challenge is very important because when compared to previous titers, they can show IF you respond and build appropriate antibody response. What happens with the vaccine translates over to your body's response to viruses and bacteria.
When you do not respond to a certain vaccine, that will show your doctor what specific type of infections you will be more prone to catching and have more difficulty fighting off. This is very very important.
I know that it is a difficult decision for you. I hope that you have an LLMD and Clinical Immunologist to help you.
PrimaryImmune.org is a good resource for more information.
A10- I took the jab in order to start vaccine challenge.
Had no reaction. Had no pain in injection site.
Still have sinus infection, over 2 weeks now.
Retest blood in 4weeks. Ugh . . .
New Question- Same Post
Q- 1 year 2 months in on bvt ,roceph and everything else ...some ok days ..
i wonder how to get iv ig ...or do i need to go to mexico?
A11- Go to your primary doc or an immunologist doc and request
IGG. 1
IGG. 2
IGG. 3
IGG. 4
IGG serum
This blood work will get you answers.
A12- I've been in a similar situation for the last three years. Need IVIG but have no diagnosis for it. It is also used to treat neuromuscular disoders (of which I have) but I'm getting the run around from drs and not getting the proper tests that I need. Let me know if you have any success getting these infusions.
A13- I will share my experiences with IVIG.
I started on dec 27, 2016 on quest for IVIG.. It took 2 months starting with vaccine challenge, blood work, immunologist appointments (necessary) to get approved by insurance. IVIG started in March.
It has now been 6 months of treatment so I m in the process of getting recertified.
After 2nd month of IVIG, I woke up with that AWLFUL hangover feeling gone ! No toxic feeling. Pain level lowered. Energy level higher. I have steadily made major improvements the past 6 months.
I attribute gains to a variety of things, not just IVIG.
Aggressive antibiotics
Clean diet
Sleep
IVIG
Supplements
Epsom salt baths
Just added weight resistance and exercise
I ve also had some MAJOR relapses.
IC bladder surgery
2 new tick bites
Diverticulosis
I almost fainted when I looked at today s date. It is now August 2017 and I haven't been able to work since June 2016 !
So I must add that it takes a long amount of time to get well regardless of treatment options. It s a horrendous disease.
Hope this helps. Wishing you well.
Link Here
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/135289#000000
August 28, 2017