LYME- Give me your thoughts.

[Tnmom]

OK- Just starting out on treatment end- daughter diagnosed with Lyme. Have appointment made with Dr. C in mount kisco….he usually sees 10 and up but thankfully is seeing my 8 year old.

 

So I know my DD does NOT tolerate med well- I feel like a broken record- we have gone through methylation routes etc with genetic workup and supplements etc….. I am open to herbals and will do regardless of abx protocol…..

 

Have read differing opinions on chronic lyme- she has had this 1.5 to 5 years or more….. about abx and immune system etc…. I DONT WANT TO DO NOTHING BECAUSE OF FEAR…..!!!

 

Can you tell me what you wish you had done different- what you are glad you did- did your kids get better on abx despite having chronic lyme…..i have to start SOMEwhere and don't want to do nothing bc of fear- hence we made an appt. ….. I think Im just realizing this is the start of a long journey and its ok to doctor shop and to JUST START already!!

 

So- questions- give me hope here!! Give me insight into your kids- especially if they had CHRONIC Lyme and how you treated etc….

 

I can get into Dr. C and am able to see Dr. J in Washington DC- have not made that appointment yet….have to discuss with the hub man- who is an MD and quite picky…. Dr. J- we would see the Nurse Practitioner……she does the peds….anyone seen her and how was it? anyone use Dr. C????

 

Thanks for your input- SOOOOOO appreciate this- and i thought getting a diagnosis was crazy???!!!

 

I will be back….dont worry……

 

SF mom I would LOVE your input- I tried to PM you but it won't let me?? Thanks!

[jan251]

I have no answers. In almost 2 years, my child has had absolutely zero improvement on a variety of lengthy antibiotic and herbal protocols for lyme/bart/bab as well as methylation protocols of varying types. He is positive for lyme through Igenex but negative (including WB, all negative bands) through Labcorp twice. He has had positive tests for myco and strep. He has an immune deficiency that has not yet been treated and that is our next step (IVIg, probably). What I worry is that he will need yet more, lengthy antibiotics after/during treatment for the immune deficiency, in other words, it may be that we need to treat the infections, the immune deficiency, and the methylation defects *all at once*, though it still seems odd to me that we really haven't seen any improvement at all on significant antibiotic protocols. (If anyone has thoughts on this, feel free to share )

 

If you don't mind me piggybacking here, I have a lyme-related question about steroids. I understand that steroids are contraindicated in cases of lyme. Before we had our lyme results, we did a couple of 5-day rounds of steroids, to no avail. I have heard (separate from the lyme discussion) about trying a 30-day steroid course to "re-set" the immune system and I wonder if anyone with lyme has done that and what happened.

Edited March 17, 2016 by jan251

[LNN]

My son's chronic lyme was treated with multiple antibiotics taken at the same time (2-4 abx at once) to treat the 3 different forms a Lyme spirochete can take. It was a long road but he's now symptom-free and has been off all medications for 3 yrs.

 

The best advice I have is to educate yourself ad nauseum. Become a walking encyclopedia of Lyme, the immune system, inflammation and mental health. Because no doctor, no matter how experienced, can ever know your child as well as you do, and will only see your child periodically, and will only know the facts you chose to report, which will in part shape the lab tests (s)he runs. So you need to become the expert, so you know what's relevant, what to look for, when to push thru a "herx" and when to say "hey, this isn't right". Yes, forums can help as sounding boards. But strangers on the internet can only point you in directions, we can't teach you everything there is to know. So read, watch youtube videos of doctors' presentations at conferences, scour PubMed as well as natural approaches to health.

 

To start, read the pinned Lyme discussions at the top of the forum. They contain some good links. Second, read this series of articles https://www.lymedisease.org/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys/ as well as Cure Unknown by Pam Weintraub and the articles on betterhealthguy.com. These will go a long way in getting a good background on a complex subject.

 

In terms of doctors, there is no "best" Lyme doctor or "best" treatment. Finding a doctor is like finding a spouse. My Mr Right may not be your Mr Right. Get a feel for the doctor's approach, accessibility and style. I love my LLMD because he presents various options and then asks which approach resonates with my family. But some of his patients have seen this as being "wishy washy" because they're too sick to delve into the details and just want someone else to drive the bus with definitive instructions. So understand your own needs as you develop a relationship with a doctor - just make sure that doctor is an LLMD. In my experience, working with someone who's not immersed in Lyme is a frustrating waste of money.

 

On steroids - my son did several 3 week tapers of prednisone before he was diagnosed with Lyme (when we thought it was "just" pandas). Two tapers helped immensely, one didn't. Steroids are generally avoided in Lyme because long-term dosing suppresses the immune system (a 3 week taper isn't "long term" IMO) and a short term dose (incl a 3 week taper) won't bring lasting improvement because the source of the inflammation (the infection) will still be there to re-start the inflammation as soon as you stop the prednisone. So if there's an active infection (of Lyme, or any other bacteria or virus), the immune system isn't going to be "re-set" because the immune system is doing exactly what it should be doing - creating inflammation as a way to call immune cells into action. Prednisone in my experience is helpful for temporary relief in a really bad situation caused by a chronic infection or when you're certain the infection is gone and you just want to speed up recovery - or long term use for autoimmune conditions where the inflammation can cause permanent damage to an organ).

 

So if your child is non functional, there's a place for steroids even in Lyme (IMO). But realize that the improvements probably won't be long lasting. Still, sometimes even a few weeks reprieve can be a God-send in a family that's tearing apart.

 

Oh - an in terms of having to treat multiple problems at once - yes, you have to. Lyme treatment is not linear. You don't have the luxury of treating just Lyme and then moving on to other problems. Biology is a complex web of inter-related systems. A good doctor may focus on the largest problem first, and then cycle thru other issues. This is like juggling. You may focus your attention on a particular ball at any moment in time, but you can never take your eye off the other balls.

 

Become well-informed and very organized and methodical. That's about the best advice I can give.

[sf_mom]

LLM said it all so well that I have very little to add.

 

I too believe the short term use of steroids or longer term small dose steroid can be extremely helpful for reprieve.

 

Things I would have done differently:

• Checked for mold earlier in our treatment process
• Considered alternative therapies sooner: Oxidative Therapies, PK Protocol, etc
• Utilized pulse therapies sooner: Need to train the body to fight infection on its own
• Sometimes I ignored the obvious due to being overwhelmed, the costs associated with treatment, fighting insurance, treatment fatigue, etc. It all added up to a longer treatment timeline for our children

For us antibiotics were very helpful. We also took multiple antibiotics, 2 to 4 at any given time.

[Tnmom]

Thanks for replies and input. Great advice.

 

On mold- we had our previous home tested before moving. My DD itched all the time and it was positive for mold. Great. Just great. But seriously, we built a house and are in it and examined every part of the building process so thankfully for now it's not an EXTErNAL issue at HOME. But can I ask what you did to check internal mold? I have heard of shoemaker.... Need to look into that more but curious what your LLMD(I assume it was the LLMD?) ordered or did to look into mold and what was done to treat? Thanks so much.

[LNN]

i agree I'd have looked for mold sooner - it was the last hurdle in my son's recovery and it was the trigger that caused my daughter to falter into some serious health issues that she's fighting now. But like SFMom, there was so much to tackle all at once, that while I wish we'd handled it sooner, I don't know that we could've because things were overlapping so much that it was too murky. For us, the mold was in the school building. My son's recovery wasn't complete until he matriculated from that school building and it wasn't until my daughter went thru the exact same classrooms (without Pandas or Lyme as an issue) and got better when home for winter break that we could see that mold was the issue.

 

For my daughter, we ran some of the labs on Shoemaker's website www.survivingmold.com - particularly the HLA-DR gene test, C4a and MSH. From his site, he says

"the labs we almost always obtain in kids: HLA,MSH, C4a, MMP9, TGF beta-1, CD4+CD25++CD127 lo/- (NB this is a test only obtained from

Quest Baltimore), AGA, ACLA." http://www.survivingmold.com/treatment/treatment-faqs

But...as SFMom points out, you also need to be mindful of cash flow. For us, Lyme was clearly an issue, mold was only a consideration after DS didn't get completely well after 1.5 yrs. So we couldn't have afforded to do it all at once and even positive C4a and other labs could've been caused by both lyme and mold. So while I wish we'd found mold sooner, I don't know if that was possible. We had to let other things play out first.

However, if you know you've moved out of a moldy environment, do spend some time on the survivingmold website and read up on cholestryamine and detox. If your daughter can't detox well, then the mold toxins from your last home may still be causing inflammation in her and you'd want to consider using cholestryamine as a step prior to Lyme treatment, as way to help her body reduce inflammation. Dr C should have some experience in this and should be able to guide you. Just be sure to mention it as part of the health history.

[bws1565]

My daughters dx was recently corrected to Lyme/Bart after 5 years of treating Lyme and close to 12 years of suffering.

 

We are using Lyme Literate natural/herbalist close to Mt Kisco with very good success up until now. I think her improvement, after about 6 months of treatment is close to 80%. We are expecting further improvement as per the doctor.

 

PM for further information if you would like

[Tnmom]

Well I now have an official reading assignment for this weekend:)

 

Gladly accepted!

 

Questions: I apologize in advance but am extremely grateful for direction. This may be a big part in some peoples not getting better despite abx....etc....all input helps and like I've said before this forum and peoples stories is what got us to this point in the first place. Thanks.

 

1. In regards to lab work up for mold I am looking in surviving mold website and see a number of labs to order..... Is there a particular lab this must be tested through? Quest ok?

 

2. I am suspecting my car actually -gad! And unfortunately our church(which is actually our kids school) as being a source of mold. Did you do an ERMI test? If so, do you do it yourself?? I can just see me sneaking into church with a vacuum or such to get samples.... And I would!

 

3. We did 23 and me.... Does anyone know if I can get HLA genes off of that???

 

4. I would assume a leading ILADS LLMD who does extensive research would be aware of mold right?? But I'm done assuming.... Did your LLMDs know about this....I'm sure llm yours did. ...

 

That's all my questions and if you don't know- no worries!!!

 

Grateful

[Tnmom]

to answer some of my own questions in case another person reads this

 

no i can't find results via 23 and me for HLA sub typing for mold specific markers

 

Yes labs run through quest and sent out to a special lab - national jewish laboratories…or so I read

 

I have read a great article by Chris Kessler in regards to mold sampling...

 

https://chriskresser.com/5-things-you-should-know-about-toxic-mold-illness/

 

I hate that we did air sampling--- we have since moved so I will never KNOW what mold it was or what was missed but really it doesn't change our current direction….

[Wombat140]

to answer some of my own questions in case another person reads this

 

no i can't find results via 23 and me for HLA sub typing for mold specific markers

 

Thanks very much! I was trying to get answers to that question myself. How do you know that, though, did somebody tell you? Or is it just that it isn't in 23andMe's own report? If so, a lot of other things that people here use it for aren't in that either (all the methylation stuff, for instance), but you can get those by plugging your raw 23andMe data into another website. Does anyone know whether the same's true of HLA?