Getting ready to go see Dr. T

[cobbiemommy]

Before lunch time we will see the venerable Dr. T for the first time. I feel like we have reached the end of the line with docs and treatments and he is our last hope (at least for now). We started this journey when DS was 9 and I knew the diagnosis of Asperger's was just wrong. Don't ask me how I knew; it was just bits and pieces of things did not add up correctly.

 

We have been on GF/Cf/SF/EF diets, which were all inappropriate for him. He has been on Bicillin shots, allergy shots, he has had multiple IVIgs (which helped some), he has been on antibiotics, social skills programs, OCD therapy, and horrible psych meds.

 

The day before we left, we received copies of the lab results. Viral markers were wonky, not horribly, but still wonky. The interesting thing is these same viral markers were wonky two years ago. I think there is something to that. I hope Dr. T can sort some of this out for us. Like most of you, we have a huge file full of lab tests, treatments, and questions.

 

I am tired, DS is exhausted (a common state of affairs) and we are flying home to our little town, tonight. I love the docs of the big city, but I still love farmer I married from the small town, more!

 

Wish us luck.

 

Cobbie

[mdmom]

Best of luck to you today. Dr. T is a real warrior for kids like ours. I hope you will get your questions answered.

 

Not sure of your son's history, but have you ever seen an LLMD? Not suggesting he has Lyme, however, many LLMDs are very good at diagnosing strange infections that other docs don't think to look for. Also, they tend to diagnose based on the clinical picture and use test results only as further proof of a suspected infection.

 

Sounds like you've done it all at this point, so forgive me if I'm speaking out of turn.

 

Hang in there....and know there are others out there fighting the fight like you.

[smartyjones]

cobbie -- do you have on your list to discuss copper/zinc issues with dr T? how about toxoplasma gondii?

 

 

good luck at the appt -- keep us posted.

[cobbiemommy]

He did check for copper and zinc issues. We do go to an LLMD, Dr. J. Turns out we have plenty of issues, some genetic. Tomorrow, when I am home and can focus on it more, I will have many question to ask.

[mama2alex]

Has Dr. J had you look at mold exposure/toxicity? Many of the symptoms overlap with Lyme, and many Lyme patients find they are also susceptible to mold toxicity. We are dealing with it right now. You can test your home for $300 and there are several blood tests that can be indicators (C4A, MSH, VEGF, and HLA genetic testing). I think there are several others on here/Lyme forum who've dealt with mold toxicity too. Its easy to look at your house and think there couldn't be mold, but you can't tell by looking. Also, many schools have flat roofs that are many years old and are susceptible to water damage/mold.

[michelew]

Cobbie-We were feeling like we were at our wit's end, as well. But, now we're thinking that maybe we're finally onto something. My son has high Myco P numbers, also has Lyme bands (Igenex positive) and is also immunodeficient. After about two months, post-HD IVIG in October of 2011, we felt that we were finally moving in the right direction. However, since my son was also receiving antibiotics, we did not know what treatment was having the biggest impact, and because the IVIG seemed to have a delayed reaction, we weren't really sure that this was what was helping.

 

We kept our son on ABX alone for a period of 7 mos, and did not see any improvements on the ABX alone. Then in June of 2012, he was receiving IV abx for the Lyme and also a weekly dose of IVIG at 20 mg per week. This lasted for 2 mos. During this time, our son was definitely improving, albeit slowly. Again, we weren't really sure what to attribute the improvement to, since we were doing two treatments simultaneously.

 

Well, my son's white blood cells had gone down, so the doctor wanted to halt all therapy for a period of one month, so we stopped everything. During this time, I slowly saw my son regressing. Because of this, the doctor decided to put him back on a broad spectrum abx in November of 2012, one month after everything had stopped. My son has been on abx now since that time, but has not resumed any IVIG, and he is currently in a crisis mode.

 

We never felt we'd ever be in this place again. The only good to come of this, is the fact that now we realize that the IVIG was probably doing much more than we thought, and that we probably are dealing with more of an autoimmune situation, then the infections causing these problems themselves.

 

There's a new paper that was posted on PANDASNETWORK.org, entitled "Latest Research on Autoimmune Encephalitis. They recommend as the first line of defense, either doing PEX or IVIG in combination with IV steroids. Given my son's history of other autoimmune issues, I'm convinced that this is a much bigger player than the infections themselves.

 

We would love to get PEX for our son, but it seems as though this will be almost an impossibility, so the next thing we're going to try is IVIG with IV steroids. We are hoping this will stop his immune system from continuing the assault on his brain. This is something we are going to try to get set up on a monthly basis, until he is hopefully in remission.

 

Before we were just taking shots in the dark, not really knowing what exactly we were treating or what exactly was working, but now we are feeling pretty confident that the immune system is what needs to be targeted, in a planned methodical way. I know that there are a lot of people who say that PEX and IVIG were not permanent solutions for their children, but perhaps had they followed up with monthly treatments, they would have been able to hold onto their gains, and possibly gone into remission. Just my two cents.

 

Good luck...I feel your pain.

 

Michele

[dcmom]

Hey Michelle-

 

I am running out- but just wanted to say that IV steroids (solumedral) alone, has been a literal lifesaver for both of my girls!

 

Good luck!

[sf_mom]

Like others have said... If treatment has stalled for your son there are a few issues that absolutely get in the way of full recovery that should to be investigated when dealing with chronic infections. It is hard to pick and choose which tests and it all seems important: KPU testing, Zinc/Copper ratios, Mold, Comprehensive Stool Analysis (yeast, parasites, enzymes), biofilm's, etc. Obviously you have unraveled wonky elevated viral numbers.... that seem to be remain consistently high. Our family has been dealing with similar and more than one virus: EBV, HHV6 and several very high strains of Coxsackies. What I have learned is viruses love to bind to heavy metals sooooooooooo since his titers remain high you should consider investigating heavy metal toxicity. We used Doctors Data, its a urine analysis and most of the cost was covered by insurance. With a compromised immune system the body wants to load up and that includes all kinds of stuff like heavy metals. We have had success treating viruses for the past two years and most of our titers are now within normal range however we anticipate viral titers to rise again as we start chelation.

 

I thought I'd include to link to copper toxicity 'I've posted before'. Its very interesting read and explains a lot of cause and effect http://www.tvernonlac.com/copper-toxicity.html