justinekno

Hmm. Well I guess we can give it a try and back down on it for a few days. My concern is that my ds had alot of gut issues (constipation) prior to antibiotics that we were able to correct once we did stool testing. I don't want to mess up his gut again now that we are on antibiotics. Justine -- I've been told that S. Boulardii is especially effective with regard to diarrhea, so maybe if you cut back on that, your child would have fewer issues regarding constipation? Yes, Florastor can constipate you. When we started on it, our LLMD said it can do that and to increase Vit C and magnesium to help offset it. As stated above, maybe cut back a bit on the Florator but continue the regular probiotics and lots of water.

We have this same problem. I increased the fiber - we already did fruits & vegis but I switched our bread to whole wheat grains and upped the vegis and fruits that begin with P - peaches, pears, plums. I also give my son aloe vera juice which is supposed to help with constipation (dr's suggestion). We don't do dairy so I am at a loss for what else to add. I didn't like the ingredients in the Metameucil type products so we're trying to go the natural way. We also do probiotics and S. Boulardii twice a day and lots of water. I don't know about constipation being caused by yeast.

I read an article recently (ugh, can't remember where though) that said that the problem/concern is that antibiotics aren't being created as often as they were in the past.

If you scroll down on this Lyme forum, we had a thread going about supplements.

I think I read HIV is the only other one.

I think that's true for any dr you see. You have to do your homework on the dr and his credentials & experience and in the beginning, take everything they say with a grain of salt. I think that's why second opinions are always a good idea too.

I think you could try a search on the PANDAS site for CD57 and you would get some threads about it. I went the CD57 route and my number was low (20 something) but from what I understand, not all Lyme dr's feel it is a good indicator of Lyme. If you google CD57, there's a lot of info about it too. I guess since insurance usually pays for it, it's a good first step. I have a history of a tick bite (bulls eye rash) and symptoms despite being treated by doxy for 10 days 14 years ago so the CD57 test was just one more indicator that I should look into the possibility of Lyme still being with me One thing to note, it's supposedly only appropriate for adults.

He does not take insurance

Maybe this is a question worth emailing to Dr. Cunningham? I know she has had some emails from some of us on the Forum asking about the relation of Lyme and CamKinase. Maybe if she doesn't know the answer, she could include it with the other Lyme info she is looking into (one being congenital Lyme).

Is Yale open to things like PANDAS and Lyme?

Is it Folic Acid or Folinic Acid?

We had our integrative dr sign the order. I am still waiting to see if we get reimbursed (sent the paperwork to ins co yesterday).

Thanks for this info. We are going to see a holistic LLMD next month so I have been doing some research on more natural ways to treat PANDAS and Lyme.

Thank you for this info. I was able to email them and receive confirmation that the dr we are going to see is an ILADS member. They also gave me some info about his training which was very helpful.

If you have a particular dr in mind, do you know if you can contact ILAD and see if they are a member?

It seems like in the Lyme world, the terms LLMD and ILADS trained are used interchangeably. Can anyone explain the difference? Is it better to see an LLMD or ILADS trained MD? Does it make a difference in the treatment? Are there different beliefs?

In my opinion, anyone who can sit down and play Life and be happy, must be feeling better. I could never get into that game We are about three weeks into antibiotics/antifungals. Maybe that is what we are seeing-a regression?! Funny, after I typed this last night, we sat down and played Life with a friend and he was wonderful. Go figure.

But from what I have read and experienced personally, not all dr's (even LLMD's) agree with the CD57 being used a Lyme test. My CD57 was 22 but a couple of dr's I have seen say that the body has so few natural killer cells anyway, it's not surprising that at times, only a few would show up on a slide. I don't really know enough to argue either way.

We have a first appt next month with an LLMD. My son tested negative for co-infections through Labcorp and Clinical Pathology. We only did the Lyme test through IGenex.

So does that mean you are giving the probiotic with the antibiotic?

We have had abnormal EEG's in the past. We went to a neurologist years ago bc my son had an eye tic. The neurologist said that he thought the eye blink was a tic but sometimes it was a seizure. The only way to decipher between the two was when he was attached to an EEG monitor. He was put on a low dose of Topamax which did not change the eye tic. The dr then decided to wean him off of the Topamax after he had several overnight and short term EEG's that read normal. That was three years ago. He said my son would grow out of the tic (he still has it though). We are now treating for congenital Lyme and PANDAS. What did the dr think your son's seizure symptoms were? Did he say what part of the brain was involved? Did he recommend medication?

We are on the same regimen for Lyme although we have not done IVIG. We saw improvement after about a week on the antibiotics. We then had some herxing and then regression about three weeks after we first started the antibiotics. We are now starting to see improvement again. What a rollercoaster this is.

Am I correct that neither one can be taken at the same time as supplements, probiotic or antibiotic? There's just not enough hours in the day!!

I see alot of talk about Bentonite Clay on this board and the Lyme board but not so much about Activated Charcoal? Is there a difference? One better than the other for detox?

Does anyone know what supplements shouldn't be taken at the same time as a probiotic or antibiotic? I have Dr. Bock's book which is helpful in knowing what supplement to take with other supplements but he doesn't really address antibiotic use in relation to timing of supplements. I give supplements with antibiotics but wondering if I shouldn't.