Help Please! Low Dose Immunotherapy?

[cobygurl]

Please help. Just wondering if anyone has tried lose dose immunotherapy for strep? Our ND wants to use in on my 7 year old son to see if this is part of the lingering problem.

 

My son's original pans trigger was coxsackie and he was treated for that and then was told he was positive for Lyme but we have only used supplements to treat.

 

He has been so good for the last 2 years but now something is off. We haven't done any blood testing as his medical doctor is in the States (we are in Canada) and we haven't been able to get out.

 

Strep didn't seem to be a big issue then but now his ND wants to use the low dose immunotherapy as a diagnostic tool for strep, basically to treat/ rule it out as the trigger. Anyone have any thoughts?

 

Really feeling sad and scared at this turn of events especially because we have been doing so well. Right now he has two tics, counting and hand flexing that he has recently developed. Thank you in advance.

[cobygurl]

I just wanted to say that I think low dose immunotherapy is also referred to as LDI or LDA. He would be given the dose not through injection but sublingually. I would be grateful for any feedback. Thanks.

[putting together the piece]

For what it is worth, both my boys have been on the LDI for

Lyme for a year now and that has proved to be beneficial. Last month

they started the LDI for strep. We had 1.5 days of disrupted

behavior and then things evened out. I am hoping to see good results

from this as well. We started at a very low dose of 7 parts per

million.

[cobygurl]

Thank you so much for your reply!

 

Can you tell me how old your boys are? I am wondering if 7 is too young for LDA.

 

I am glad to hear your boys are doing well! Can you tell me what kind of flare you experienced when you started the strep? My son seems to be in a flare right now, do you advise to start when they are flared up?

 

I really am just hesitant to try something that might make him worse temporarily even though it seems like it would be very beneficial.

 

Are there any protocols in place when you do the LDA with strep? I read somewhere that some people take an antibiotic in conjunction.

 

So I guess I'm still a little confused but my understanding is that LDA's end result is to help the immune system stop overreacting to the trigger? Does it also kill the virus/bacteria?

 

Thank you!!!

[chubbermommy]

Hi there. We are also in Canada! And trying LDI with our ND. I wonder if I know you from Facebook (are you on the PANDAS Ontario group by any chance)? Please PM me to let me know.

 

So far we haven't had much success yet, but I am committed to trying it for 6 months.

[NancyD]

Cobygurl, my DD19 has tried LDA for mold and LDI for Lyme, strep, and autologous - all sub-lingual. Thus far, she has tried 3 doses of LDI Lyme (14c, 17c, and 20c) and 1 dose of strep (20c) but unfortunately she flared from each. So she has to try a more diluted dose - maybe 30c. She also tried 3 doses of LDA mold (12c, 11.5c, and 11c) but she had no reaction whatsoever so she will try 10.5c next.

 

She had some success with LDI autologous on the first dose (12c), which I'm guessing contains strep from her sinuses. The purified proteins are a lot stronger than the proteins in the autologous LDI, which was created from a nasal wash. With the first dose my DD had a 20% improvement in her anxiety/OCD/ intrusive thoughts for 4 days and with the second dose she had a 20% improvement for 7 days. She will try a booster in between doses to see if she if she can extend the good days, but she should see improvement with every core dose. Once we have a steady 20% improvement we will circle back to LDI strep and Lyme.

 

I am very hopeful about LDI!

[cobygurl]

Hi Nancyd,

 

Thanks for sharing your experience. You said your daughter flared on the strep LDI. Was it bad and how long did the flare last? I won't lie, I am afraid to start something new in case of a bad flare especially since strep was never actually identified as a trigger in our case (it was coxsackie) We are supposed to start at 15c which we were told is a very low dose. Again, if you could let me know how bad the flares were and how you treated them and how long they lasted I would appreciate it. Thanks!!!

[NancyD]

Hi Cobygurl,

 

The flare was not nearly as bad as when she herxed on IV abx for Lyme. It lasted about a week. Increased anxiety/OCD/intrusive thoughts. We started with 20c, which is 500 times more diluted than 15c, yet that was too strong for DD. My DD is extremely sensitive to everything. That is why I want the next LDI strep and Lyme dose to be between 25c and 30c. From what I understand, the length of time of the flare is directly related to how strong the next dose should be.

 

If strep is not a problem for her then she won't flare. If she flares at all from any LDI then it's a good sign it will work. The trick is to start very diluted and go slowly so there is no flare. But you do have to start somewhere. 15c is a low dose for many, but for those who are very complex and sensitive it can be too high. If that is the case with your DS then ask for 20c.

 

There is not much you can do for a flare except detox more and take something for the inflammation. She takes Chinese Skullcap for inflammation, along with Querciplex, curcumin, Omega 3, etc. She also takes high doses of Ashwagandha, GABA, and magnesium, which helps with stress and anxiety. For detox she takes apo-Hepat, charcoal, pyrophylite clay, chlorella, Robert's Formula, milk thistle, lots of water, Epsom salts bath, etc. BTW, you should check to see if there is an LDI for coxsackie. There may be.

[cobygurl]

Hi All,

 

Thank you so much for all the information!

 

We started the strep 16c LDI today.

 

I would be lying if I said I wasn't nervous.

 

Could you please tell me for those of you who experienced a flare how long it took for you to notice that your child was flaring?

 

Thanks in advance as I am one nervous mama!

[NancyD]

Whether a flare or improvement I always noticed within 48 hours with my DD but for some it can take longer. Keep us posted on how you do with the LDI. Good luck!

[cobygurl]

Hi, just to update we did a 16c of strep on Friday and noticed an immediate improvement. It lasted about 2 days and some of his behaviours came back.

 

I would definitely say 5 days post LDI and he has improved slightly.

 

Our ND wants to try the 16c again to see what happens, if we again notice an improvement.

 

When you tried LDI, have you stayed with the same dose when noticing an improvement or do you move up? I'm still trying to figure out if the goal is to be able to take the highest dosage without reacting - then you know your immune system has stopped overreacting to the strep?

 

Thanks again for all your feedback!

[NancyD]

Cobygurl, that is GREAT NEWS! 16c should be his core dose. The number of good days should increase with each core dose. Your son's next dose should be exactly 7 weeks from the date of the first dose. You could try a booster at 16.5c or 17c, which is 50 and 100x more diluted respectively, to get you through until the next dose but not 16c. The goal is not to increase your dosage but to find your core dose and stick with that. You may, however, have to tweak your core dose moving forward depending upon how he does. If he starts to flare you may have to go to 16.5c or 17c for a core dose. And if you see no improvement after the second dose you may want to increase to 15.5 or 15c. This is awesome news...you should be very pleased!