My son has Lyme

[LaurenK]

I don't know what to do for my son. He is suffering so much. I've read so much about Lyme on this forum and then so much about IVIG, but does IVIG work even if you have Lyme? Will it work for the autoimmune part of Lyme?

[tpotter]

I don't know what to do for my son. He is suffering so much. I've read so much about Lyme on this forum and then so much about IVIG, but does IVIG work even if you have Lyme? Will it work for the autoimmune part of Lyme?

 

My DS has lyme, bartonella, babesia and erlichiosis. He also has PANDAS, and who knows what else. He is seen by an LLMD for the Lyme and co- part, and he gets IVIG (got it every 6-8 weeks.) Definitely helped immensely with the neuropsych issues. But, it's really important to also get at the infections or the IVIG will not be able to work (we're still fighting infection, so it's been tough.) But, don't expect the IVIG to work on the first or second time if there's also lyme. And, keep in mind, that there may be some herxing (and some people have said it's really bad...for us, it wasn't.)

[NancyD]

My DD's PANDAS was helped by IVIg for a couple of years (she got two good remissions), BUT with untreated Lyme, Bartonella, and MycoP the infection kept coming back and while her tics never returned the anxiety and OCD kept getting worse. That changed once we started treatment for TBIs. We no longer needed the infusions. She was helped by multiple abx and supplements. We did also find out she has a methylation problem and we're still waiting for her KPU tests to come back, although we do know she is low on zinc.

[sf_mom]

Our older DS had 3 hdIVIG two years ago for PANDAS diagnoses. We did see improvement with treatments over the course of a one year period. Six months post his last hdIVIG he had minor PANDAS symptom of a mild TIC but also had mood liability and unfortunately blood in stool. We pursued an LLMD at that point to investigate chronic infection and the cause for blood in his stool further. We did eventually find Lyme Disease as well as co-infections. Since treating for Lyme we've seen further improvements and at this time he is in full remission of PANDAS like symptoms and has not required an hdIVIG since Jan. 2010. We now see 2 different integrative LLMD and have addressed many issues well beyond just Lyme that includes vitamin/mineral deficiencies, detox'ing abilities, gut issues, viruses, etc I believe every aspect of our Lyme treatment has been equally important and necessary for advancements towards full recovery. We were hopefully that some of the time spent treating for PANDAS (one year) would have accounted for a shorter treatment timeline of Lyme Disease et al (average two years). We are now 16 month into treating for Lyme for older DS and believe we will easily hit the two year mark of treatment but hopefully off antibiotics in the next year.

 

Due to our older son's diagnoses, we tested our younger children who also ended up positive for Lyme et al. One child had OCD and rage behavior but lacked sudden on-set, the other child had entirely different presentation of high anxiety, mood, under weight, speech issues (non verbal to slurred) and lupus like symptoms. Both children had low IgG 1s and IgG 3s. We do not feel they will require hdIVIG treatments for chronic infection and auto-immune aspect. However, I've learned never to rule out any form of treatment to get them well.

 

Good Luck. For us, it was finding a team of Dr.'s that truly understood LD as well as all the other issues that comes along with the immune system dysfunction that 'potentially' resulted from these infections. Hopefully your LLMD can guide on the use of IVIG and if its warranted in your son's case...

[sptcmom]

I don't know what to do for my son. He is suffering so much. I've read so much about Lyme on this forum and then so much about IVIG, but does IVIG work even if you have Lyme? Will it work for the autoimmune part of Lyme?

The autoimmune part of Lyme is very difficult to deal with. There can be upto four or more mechanisms in play once the autoimmunity is triggered.

My DS has PANDAS and lyme and coinfections but PANDAS is his primary problem we have come to discover. We are now trying to meticulously eliminate the infections one by one in the right order which is critical. We are also trying to determine his specific mechanism for his autoimmunity. DH's family has a VERy high genetic susceptibility to autoimmune but DH is fine. I used to have PANDAS from age 4 to 12 which resolved after puberty. So DS has a double whammy.

But

DH has no trace to any autoimmunity whatsover. DH received only two vaccines in his life and that too in his teens. My mom in law's side of the family is very high in autoimmune conditions- chorea, arthritis, motor tics, CFS, Fibromyalgia, Diabetes etc. BUT they all seem to be vaccine triggered in DH's family. His nieces and my DS ended up with severe autoimmunity (Ds also has Vitiligo)two weeks after their DTaP vaccination which is known to open up the blood brain barrier in susceptible children.

 

I have an 8 year old patient whose severe onset of PANDAS was triggered just days after a flu mist.

 

Anyways, we did one hd IVIG last year for DS which seemed to help with his anxiety quite a bit. But we also had 4 weeks of herxing and then he was exposed to strep so it all started all over again. The IVIG administering physician himself had told us that as per his experience with kids like Ds either just one IVIG would give us the epiphany moment or IVIG wasnt the way for us.

We are not ruling out IVIG but are currently pursuing other more natural immune modulating alternatives like GcMAF and Stem cells.

[LaurenK]

@ Nancy what infection kept coming back? Could your daughter have just relapsed because she got sick in general, like anyone with an autoimmune disease?

[NancyD]

Strep infection in sinuses kept coming back. Her titers spiked and she would go into severe exacerbation - with violent rages daily. Since being treated for Lyme/Bartonella she has had one sinus infection but no rages and tics never came back. First time this has EVER happened. In fact, we checked her titers recently and although Anti-DNASE B was elevated we did not see any of the severe behaviors -- just a little moodiness.

 

@ Nancy what infection kept coming back? Could your daughter have just relapsed because she got sick in general, like anyone with an autoimmune disease?

[tpotter]

 

Due to our older son's diagnoses, we tested our younger children who also ended up positive for Lyme et al. One child had OCD and rage behavior but lacked sudden on-set, the other child had entirely different presentation of high anxiety, mood, under weight, speech issues (non verbal to slurred) and lupus like symptoms.

 

 

I wonder if the sudden onset was there, but you just never recognized it. Case in point...younger DS had "sudden onset" with bad sinus infections in the ethmoid sinuses. Older DS with found at 15 yo, only because I saw paper written by Dr. K. as a result of younger DS already being diagnosed (otherwise, I would never have put 2 and 2 together, and older DS would no probably be committed to psych hospital indefinitely or have successfully committed suicide.) BUT, we have since found evidence of significant handwriting changes in a writing sample from 1st grade...found an old writing log...DS is now 19...and I can remember incidents which I would now say were clearly separation anxiety, OCD, a tic disorder in 4th grade. He definitely had allergic reaction to MMR, and was diagnosed with ADHD in 4th grade, and Aspeger's in 7th grade. Many of the symptoms have resolved since doing tx for Lyme and PANDAS (he's had PEX 1 time and IVIG about 6 times, plus about 1 1/2 years of abx for lyme.) And, I just found out that I have the same immune deficiency as both my kids (specific immune deficiency,) in which I even was "treated" with a pneumovax last year (didn't take!) So, we now know that there's definitely a genetic piece, and the "non-sudden" onset of my older DS was simply that we didn't know what we were looking at.

[LaurenK]

How is your 19 year old son doing now? Is he symptom free?

[momaine]

My dd has been diagnosed with lyme/bartonella and pandas. She has had ten high dose IVIG. Initially, she benefitted greatly from the IVIG....then she seemed to stop benefitting and that is when we discovered the lyme/bart piece. Now, once again, the IVIG's bring her great relief, for a time, then it seems to wear off and she she needs it done again. For her, it has been extremely beneficial.