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Posted 3/20/2016 3:05 PM (GMT 0)
My daughter has been on two antibiotics for 6 weeks and has had basically no changes--no herx and no improvement. Her LLMD says her problem may be her immune system response to the lyme and not really the lyme itself, so wants to stop the abx and start low dose immunotherapy. This seems to make sense, but then why did she test positive for lyme in the first place?
Posted 3/20/2016 3:47 PM (GMT 0)
I am not sure, but 6 wks isn't very long. It may be that this particular combo she's not responding to. I personally would try a few other combos before jumping to LDI. I did exactly what you are contemplating (6 wks of abx then LDI). I had improvement with LDI but ultimately ended up stopping because I felt I didn't give abx long enough. Also, not enough research on how LDI is actually working. Most docs won't let you use herbs/antibiotics while on LDI, but if I found a doc that would let me do both I would.

Also, on the facebook LDI group there are some that have gotten worse with it and stopped. May be a good idea to join the group and ask questions.

What antibiotic combo is your daughter doing? Does she have coinfections?
Posted 3/20/2016 3:55 PM (GMT 0)
I tested positive for lyme and was given Ceftin and Biaxin and at the 30 day mark I still felt absolutely no change. Well, except I had nauseous and sometimes vomiting, not horribly but just a tad. I decided to go to herbs.

Just remember that whatever she decides, it is not in stone and you can always change.
Posted 3/20/2016 4:18 PM (GMT 0)
I agree with what others have said. - Maybe try another combo - if the LLMD is willing to prescribe it.
I wouldn't just go with the LDI and nothing else - I don't think it's been around long enough for Lyme disease to know if it's really a good treatment.

So, personally, I would try another combo...or try an herbal...or both.

And, 6 weeks isn't very long.

How long has your daughter been ill?
Posted 3/20/2016 5:44 PM (GMT 0)
Dad-Your older posts state your daughter has leaky gut issues. Some people with leaky gut need to resolve that before they can start treating. It's something to consider.
Posted 3/20/2016 6:21 PM (GMT 0)
6 weeks and your LLMD is throwing up the proverbial white flag? wow. i'm 1 year into treatment and i've been on a dozen antibiotic combinations and can't seem to get my main symptoms to persistently stay low yet i've not even contemplated LDI nor has my LLMD. many times with these infections its the right combination of medicine that works for a particular patient hence the need for an experienced LLMD. don't want to question the one you're using but 6 weeks and done doesn't sound like anything i've heard from another LLMD in my 2 years being sick.
Posted 3/20/2016 6:26 PM (GMT 0)
Thanks for the replies! I also would like to continue with abx or herbs before trying LDI.

Girlie, We believe she has had lyme for years, but just diagnosed at the beginning of this year.

jrpsf, Yes, we started treating her candida and leaky gut before and during lyme. She just got back a much improved food allergy report, so we are feeling better about her gut.
Posted 3/20/2016 10:55 PM (GMT 0)
Generally speaking - when we've had lyme for many years...it will take longer to see results.

I am surprised she hasn't herxed though.

Would you mind sharing what protocol she has been on? What antibiotics and dosages?
Posted 3/20/2016 11:41 PM (GMT 0)
Just fyi, i tried biaxin, doxy, tinidazole, flagyl, bactrim, ceftin - all for short periods. I never herxed or had noticable improvements. I tried azithromycin in January and noticed major improvements. Unfortunately, it effected my ears (side effect) so I had to stop. So I totally believe that certain drugs that work for others may not work for her.

I do believe I herxed after 10 days on Japanese Knotweed. Developed a stiff neck and nerve pain in elbow.
Posted 3/21/2016 2:23 AM (GMT 0)
I've herxed on nothing (just my immune system), and I've herxed on herbs. But 3 weeks into doxy I haven't herxed (yet), but when I introduced a new herb, Japanese knot weed, I had a small herx.

I believe my body responds better to herbs and immune boosting supps. However I'm going to stick with both antibiotics and herbs for now.

Has your daughter tried any herbs? It's known to be safe to do both.
Posted 3/21/2016 3:36 AM (GMT 0)
She started herbs 3 months ago--cats claw, bandoral bark, and comanda; then added abx 6 weeks ago including alinia (500 mg once a day) and ceftin (500 mg twice a day); then added rifampin (300 mg twice a day) 2 weeks ago for bartonella.
Posted 3/21/2016 3:40 AM (GMT 0)
So very hard for a Daddy to watch. My heart breaks for you.
Posted 3/21/2016 4:17 AM (GMT 0)
Dad- It may be the doses she's on. I took Alinia 500 mg 3 times a day with Rifampin and Biaxin 500 mg 2 times a day. Rifampin is typically dosed at 600 mg once a day. I didn't catch that I was supposed to take both pills at once for a week or so.
Posted 3/21/2016 4:25 AM (GMT 0)
jrpsf - Thank you for your response. How long did you take Alinia for and did you see results? Did you hx at all? Thanks
Posted 3/21/2016 4:31 AM (GMT 0)
I was on it last spring and my memory still kind of stinks. I was on it for 3(?) months. The Alinia , Rifampin, Biaxin combination made me herx like crazy. I have pre existing nerve damage and it set my nerves on fire. I made great progress with that protocol.

All protocols are best in when the meds are used in combination with other meds.

Janet
Posted 3/21/2016 2:59 PM (GMT 0)
so sorry to hear this - how old is she?
my kids had lyme too but they started treatment only a few months after they had it. as the others have said, if she has had lyme for years, it will take much longer to see results. did she have the MTFR gene tested? no herx can mean that her body is having trouble getting rid of toxins. my kids herxed by sleeping a ton and being extra cranky. a herx in a child is not necessarily like we would herx. what are her main symptoms? is she detoxing?
Posted 3/21/2016 4:01 PM (GMT 0)
Chappelle-If you don't mind-put your tag line back so new people know that the info you provide comes from someone with your depth of knowledge. I know I found that very comforting when I was starting out.
Posted 3/21/2016 4:04 PM (GMT 0)
i don't know how to? i thought it happened automatically...its on my profile?
Posted 3/21/2016 4:08 PM (GMT 0)
now that is weird - it just popped up on my last message, but didnt show up on the first one...hmmmmm
Posted 3/22/2016 1:29 PM (GMT 0)
Chapelle, She is 21. Main symptoms are severe dry eyes, fatigue, constant low grade headache, ankle and knee joint paint (constant, not moving). We haven't had her MTFR gene tested. I'll look into that. She is doing a lot of detoxing. I love your success story; congratulations!
Posted 3/22/2016 2:04 PM (GMT 0)
DryEyeDad,

To cover all the bases, can you tell me if your daughter has ever had thyroid testing?

If yes, did she have Free T4 (T4 or thyroxine, free, direct) and Free T3 (tri-iodothyronine, free, serum) testing?

Even if her levels were "normal" (aka in-range), that doesn't mean they are healthy levels.

And, if she hasn't had the tests I mentioned, I suggest you push for them and share the results here. Actually, even if she already had Free T4 and Free T3 testing, I hope you share the results here....I will show you how to interpret them.

The fact that her joint pain is constant got me thinking about low thyroid which can cause that issue (along with dry eyes, fatigue and constant low grade headache...among hundreds of other possible symptoms)
Posted 3/23/2016 4:33 AM (GMT 0)
cd3764, Yes, she has high reverse T3 (19.5), low T3 (2.4, 3.3) and fluctuating TSH (.9-3.6). She starting taking Irodorol last October (12.5mg) and compounded T3 at the beginning of this year. Would you suggest additional testing or treatment?
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