How long does ivig stay active ? Bad reaction

[401dave]

I had ivig September 9th and 10th 2016 and I had the most terrible case of my symtoms getting worse and they have just stayed like that. It's now oct 24 and I still feel the effects along with a stiff neck body aches and throwing up. Does anyone know how long ivig stays in your body? Or the effects? Thank you

[LNN]

The half life of IVIG antibodies is roughly 3 weeks. By now, most would be out of your system. Two things come to mind - First, has your doctor reviewed your symptoms to make sure this isn't some sort of meningitis or encephalitic response?

 

Second, if the IVIG made your immune system stronger and you have a chronic infection (e.g. Lyme) then you could be experiencing a continued response to your body finally being able to attack the infection. When Lyme bacteria are killed, they release toxins as a last-ditch attempt at chemical warfare. This is known as a die-off, or herxheimer reaction (called a herx in the lyme community). When my son had IVIG, he experienced a 10-week long herx that was just horrible in so many ways. Because his body didn't "follow the script" and respond the way it should have for Pandas, we tested for Lyme through Igenex labs (waited 10 weeks to make sure all donor antibodies were out of the picture). His Lyme test was negative prior to IVIG but positive afterward, because the IVIG strengthened his immune system to a point where it could finally start fighting the Lyme and producing its own antibodies - which resulted in the test finally turning positive for Lyme.

[LNN]

In case you aren't familiar with Igenex, they are the preferred lab for Lyme testing because other labs don't screen for certain markers (known as bands) that are very specific for Lyme. Igenex does screen for these bands and catches many positives that other labs miss. You can browse the threads pinned under the "Helpful Lyme Discussions" heading at the top of the Pandas forum page for a full explanation of testing and what the bands mean.

 

Bottom line - using Quest or Labcorp to test for Lyme is unreliable because they don't look for some important markers. You need to test through Igenex.

[401dave]

Yes actually my Lyme test just came back positive twice , it was done at mass general, and another doctor said the same thing your saying but it's just hard to believe because I've been on antibiotics right threw so I feel like it would have taking care of the Lyme ?. This flare is so bad after this treatment and no antibiotics are relieving the symtoms so I'm in a pretty bad spot right now.

[Rachel]

Do You know the levels of your IgA? My son's levels were low but not considered deficient (41 and normal lab ranges 50-90). Research states that people may have a hard time tolerating IVIG with low levels of IgA. It has something to do with the body rejecting the doner antibodies. I tried to get my son's doctor to order an IVIG that did not contain IgA but hospital only used one brand and would not make exceptions. My son only had 3 IVIG treatments but after each treatment, his symptoms got worse. If you do have an active Lyme infection, your body will react to IVIG and plasma exchange. My son tested negative for Lyme and coinfections but I was still uneasy after I saw how his body reacted after IVIG. Testing for Lyme or coinfections is not always reliable. However, IgneX is one of the more accurate labs. If you really suspect Lyme or coinfections, you need to be checked before doing Plasma Exchange. Plasma exchange takes the good and bad antibodies out. It takes out what your immune system needs to fight off an infection. My son's body was suppressed with plasma exchange. If he had Lyme or any type of coinfection, he might not have made it. As far as I know plasma exchange is not used to treat Lyme or coinfections but it is a secondary treatment for Basal Ganglia Antibodies.

 

Oh my! Just read your above post. Please don't attempt PEX. Get to an LLMD quickly as possible.

Edited October 25, 2016 by Rachel

[401dave]

I would love for it it to be Lyme , get treated and get better but I was treated with iv antibiotics 7 years ago and have been on all different antibiotics since... it did test positive but how would I still have that ? It's making it hard to believe.

[Rachel]

Have you joined any of the Lyme facebook forums? Lyme is hard to get rid of and to treat. Have you been checked for coinfections?

 

Low dose naltrexone is also being used by Lyme patients It helps with pain issues and helps regulate the immune system. Not sure how much it would help with some of your issues but it might be worth a trial. My best advice is to go see an LLMD and get back on antibiotics or try a herbal protocol.

[401dave]

O I tried LDN once and it flared my symtoms so bad for some odd reason. And yes I'm trying right now to get in with infectious disease at mass general in boston. Thanks for everyone's input

[LNN]

An infectious disease doctor will be, at best, a waste of time. At worst, they will charge you to spend 20 minutes telling you why you don't have Lyme, that chronic lyme doesn't exist, despite hundreds of research papers proving that it does indeed persist despite antibiotics.

 

What you need to understand is that the Lyme bacteria can take 3 different forms - it can be in the form of a spirochete - a corkscrew shaped bacteria that moves itself thru the blood using a flagella (a tail). Extracellular antibiotics like augmentin, cephalosporins, doxycycline - can kill this form. Lyme can also get inside your cells and hide from your immune system. Intra-cellular antibiotics like azithromycin can kill it when it's in this form. It can also curl itself up to make a hard exterior - a cyst form - that is nearly impossible for these antibiotics to attack. Then, once the antibiotic is stopped, it uncurls itself and begins to replicate again. Drugs like flagyl and tindamax can be somewhat effective against the cyst form. Finally, Lyme loves to colonize in biofilms - slimy, plaque-like communities of bacterias and viruses that cloak themselves from the immune system, exchange dna amongst themselves and re-emerge from the film periodically to travel thru the blood stream into a new part of the body to begin re-colonization. Biofilms are tough to attack and produce painful systems on a cyclical basis when the "pioneer" bacteria break from the film to forge new colonies.

 

So most LLMDs will treat you with multiple antibiotics at the same time - one extracellular, one intracellular, and then a few months into treatment, a cyst-buster. They may also use supplements that weaken biofilms. Using one antibiotic at a time, even via IV - isn't effective for chronic lyme.

 

The fact that you have a positive Lyme test using a standard lab tells me beyond any doubt that you aren't going to feel better until you work with an LLMD who will use this multi-pronged approach following ILADS protocols, either with pharmaceutical antibiotics, herbal antibiotics or both. An infectious disease doctor is going to follow IDSA protocols, which is using one antibiotic for 3-4 weeks and then when you aren't better, telling you that you have post-lyme syndrome and that you just have to learn to live with it.

 

There's a good LLMD in the northern Boston area, there's a Pandas/Lyme treatment center in the southern Boston area and a great LLMD in the Hartford area. If you're willing to pursue this route, let me know and I'll get you their contact info. They don't accept insurance but do you give you a claim form so you can submit to insurance to be reimbursed (you pay out of pocket at the time of visit and then get reimbursed from insurance once you've hit your deductible).

 

I highly recommend you spend a little time on ILADS website www.ilads.org and read the book Cure Unknown by Pamela Weintraub. It will explain a lot and is an easy, fascinating read.

 

I agree with Rachel - you do not want to pursue Pex. My son had Pex prior to his Lyme being diagnosed and it set him backward. Not horribly, but it did nothing to help him and was a very expensive, failed treatment. We didn't know any better at the time. But my son was eventually brought back to 100% by working with an LLMD.

[401dave]

Yes if you know any Lyme doctors that would be great. My family is calling on stop everyday looking for doctors because I'm that bad.

[401dave]

Do you think that's why I got such a flare after the ivig ? I can't see any other explanation . This is confusing

[LNN]

I happened to see my daughter's LLMD this afternoon and asked him who he'd recommend in the Boston area. He suggested this LLMD http://www.mypathmedical.com/meet-dr-lantsman/

You can also look into this practice - http://www.lymeandpanstreatmentcenter.com/about-us

 

Yes, I absolutely think your post-IVIG flare is because you have untreated/chronic Lyme. The why behind this is what I explained in my earlier post.

 

There were a number of Pandas kids who weren't getting better with standard Pandas treatments - many found out that Lyme was the reason. The researchers heard this so often that they created the broader category of Pans to cover Lyme, mycoplasma and other infections that can also trigger Pandas symptoms.

 

If you have family members who are actively involved in your care, please have them read the ILADS website and the book Cure Unknown that I mentioned above. You may be too sick to be able to absorb all the information, but these are excellent resources to help a caregiver understand what's happening. You may also want to see the movie Under Our Skin, which is on Netflix

[401dave]

Ok we left her a message. Thank you so much.

[MEB84]

Hi there. Could someone help me understand the below thread? My 3 yr old son has pans. Positive for Lyme, Mycoplasma. He had his first IVIG and it went great for a few days…then he CRASHED. All Pans symptoms got worse. We do 2nd a IVIG next week. Are people saying don’t do IVIG with Lyme or that it will cause a herx and hi just need to power through?