Sunday, February 3, 2013

CVID and Lyme

My 25 year old patient is a  liberal arts major at a small, prestigious college. He has missed multiple semesters from college because of Lyme associated cognitive problems. He seems brilliant to me. We converse about a variety of topics in literature and philosophy in a way which seems fluid and cogent. He shares a problem with so many Lyme patients. On the outside he looks OK, but observers don't know what its like inside his brain. He complains of executive dysfunction, difficulty concentrating and difficulty connecting thoughts. Reading, comprehension, and writing can all be difficult. Invisible psychiatric symptoms, mood swings, irritability and anxiety co-exist when things are bad. But - he has been stable for the last 8 months except when I try to wean him off antibiotics. The only thing that works is quadruple antibiotics, two for Lyme and two for bartonella syndrome. If I take away any one of the 4 and symptoms return quickly. A recent cold set him back for a month. He seems he holds on only by a tenuous thread. But there is something else going on, a pattern I have seen repeated in many other patients.

I ask him question of life before Lyme. He has a history of chronic, recurrent, difficult to resolve sinus infections and bronchitis.

I ordered another test: an immunoglobulin profile. Total levels of IgG, IgM, IgA, IgD and IgG. IgG subclasses 1-4.

There are deficiencies of IgG, IgM and several IgG subclasses.

I ordered a pneumonia vaccine, 23 strains, measure immune responses in 3 weeks. There is minimal IgG antibody response in 13 strains within the vaccine.

The patient has CVID - common variable immune deficiency syndrome(s), a collection of genetically predisposed, acquired disorders. This may explain much of what has been going on with this patient.

Other patients have responded to IVIG or especially the newer subcutaneous form he is scheduled to start as soon as possible.

Hopefully this will be a game changer.













6 comments:

Unknown said...

I'm curious..how below baseline values were the subclass levels? Very early on in getting ill (eventually came up with multiple positive babesia smears and positive bartonella culture), I was found to have low IGG subclass levels (and a lowered overall as well). Also have lots of neuropathy. Insurance rejected IVIG, paid for one dose of it out of pocket. Didn't improve, docs said if I didn't improve at all after one dose, then it wasn't the issue.

At the time, didn't know what to think, because I didn't have a lifetime history of destructive respiratory infections--though did have one massive sinus infection that required surgery many years ago. And since lyme-tick (whatever) infections, often fighting very persistent sinus infections. But NOT in intervening years.

Been in treatment with very well known LLMD for almost 4 years now. Not getting well. Wondering if IVIG should be revisited. Doc would be open to it.

Just wondering what is considered a significant deficiency.

thanks so much for your blog.

Pearl said...

Nice to see you back!

Colleen Gibson said...

Could this be why many children get PANDAS on top of the lyme diagnosis?

TJ said...

I also seem to have the same problem. I've had a bad lyme case since June 2011. Sometime in 2012 my IgG serum levels dropped to about 230, with all 4 subclasses deficient. My lyme doc has never seen this attributed to lyme, nor has my immunologist at Mt. Sinai in NYC. They are trying to get IVIG approved by my insurance to see if it helps. They also think I may have babesia, but they can't tell what I have because of the low IgG levels I don't test positive for anything. I had bands 41, 45, and 58 when I first got ill but all have since disappeared. Antibiotics have kept me from getting worse, maybe reduced the neuropathy a little, but every time they take me off antibiotics I get very sick again.

Barb said...

I was diagnosed with Lyme disease in 2006 with only a positive IGM test, which signaled early infection to my LLMD. Which was strange to me, as I got pretty sick the year before, with all kinds of strange symptoms occurring daily up until that point.

I also have had severe reactions to many antibiotics over the years, so he did the best he could with what I could take. After 2 years of treatment trying different oral antibiotics and many herbal/vitamin supplements, I didn't feel any better.

With getting hassled by my primary physician about her doubts that I had Lyme disease, and having the insurance company getting fed up with the 2 year treatment with no results I left the LLMD's practice, and went searching for what was really wrong with me.

I found that I had CVID, with super low numbers on my IGA, and IGG, with all of the IGG subclasses being below normal as well.

I currently get treatment with IVIG once a month, and it has been a godsend for me. Not to say that I feel like I used to, those days are gone, as the Lyme,or CVID really did a number on my nervous system, and brain.

I still have issues to this day which become more obvious as my levels of IGG go lower in the week before my scheduled treatment every month.

Now I wonder what came first? I think because of my history of sinus infections, bronchitis, and pneumonia, I had a low IGA most of my life. Genetics or Lyme or both then caused my IGG to tank as well.

I'm currently not on any treatment for Lyme, as none of my current physicians believe that I have it, or had it for that matter.

Either way, I wanted to tell you that I think it was wonderful that you thought to check your patients IG levels and are working to help him recover from this nasty disease. I can really relate to the cognitive problems he has as I struggle with them too.

Thank you for being such a great doctor!

TJ said...

Barb, the reason you may not be testing positive for anything other than the IgM with Lyme can be because of the CVID. I had multiple other IgG bands early on in my Lyme which have since vanished as I developed CVID. The IgM bands are the only ones that show up now. You might want to check the research from Hastey at UC Davis. They showed in immune deficient mice similar to human CVID, the mice could not clear the Lyme infection with out the IgG response. If you have CVID, you might not be able to make the right IgG against Lyme anymore. They also suspect that Lyme may actually contribute to CVID, and hence you don't make IgGs against lyme after you have had it more than a month and then so you have a hard time getting rid of it. It continues to drive a strong inflammatory IgM response because they are prevented from switching into IgG, which you need to beat the disease.

"The data further suggest that B. burgdorferi infection drives the humoral response away from protective, high-affinity, and long-lived antibody responses and toward the rapid induction of strongly induced, short-lived antibodies of limited efficacy."
AKA drives IgM production and blocks IgG production. You need to be able to make IgGs against Lyme to get rid of it for good.
http://www.ncbi.nlm.nih.gov/pubmed/25312948