lismom

I have started with 1500mg. But I didn't know how to increase. I think I'll do 500 every 5 days?

I bought nature's way chlorella because I wasn't sure about all the other brands. It didn't make all the claims about cultured in Japan and such, so I hope this brand is ok. Kathy

I needed this post. I don't know what I would have done without this site. My money is extremely tight but I can spare 25. I was letting others donate. This website is the main reason my son is on the right path.

I want to add this because of all the benefits it claims. Immune, antiparasitic, electrolytes, antiviral ... Wondering if anyone is incorporating this daily?

I'm sorry things have taken this turn. I think you need to keep investigating what is holding you back from getting well. Someone may have ask you this already but have you tested for lyme?

Got back from our LLMD appt. today. Went well. Confirmed lyme and Bart. Testing for Babesia. She is switching up the zith for mino with the rifampin. She also gave a sample of the glutathione liquid. So I think I'll start with that for one detox tx. She did pick up on a lab report we had that showed my son has a gene mutation HLA-27 with can make detoxing harder. We will add in chlorystamine if necessary. May look into burbur too. Kathy

We saw very quick relief from it. But...you aren't supposed to take milk thistle if you're allergic to ragweed (they're related). So my first question is whether your child could be allergic to ragweed? (which I assumed would trigger a respiratory/allergic reaction but I suppose you could see behavioral?) Wish I had words or wisdom to share. Just push fluids, BMs, and anti-inflammatories. Stay strong... Oh my gosh. I'm an idiot. Yes he is 100% allergic to ragweed. Been tested and taking shots to that and others. Your words of wisdom were spot on. Thanks.

Any thoughts towards this is appreciated. To exhausted to search the net. I was wondering whether things might flare some with the start of Milk Thistle. I know its an antioxidant as well as liver detox. Started this two days ago and yesterday things were horrid. Just wondering if that may have played a part.

I did. I took some with my phone to bring. But she won't have any problem seeing that tommorrow. It kind of confirms everything for me if you know what I mean. Kathy

Yes, I think we will definitely get a positive on the Bart. The purplish stretch marks have come out full view on lower back. Kathy

Oh my gosh. We are 2 weeks into rifampin and son's symptoms are the worst ever. He's in so much pain. I'm not sure whether we don't have his monthly flare on top of herxing. It went from 0 to 60mph. I'm barely holding it together.

Well, I rec. a link from my dad about Dr. H. This particular site had very mixed reviews. Some loved her. But I'd say more than half said they could never get in contact with her again. Never answered emails, didn't call back, staff to small and inconsiderate. I think her practice is very small with just her, office assistant and phlembotomist. They also said very expensive and expensive treatment plans. But if she had a great treatment plan I know we would pay what we have to, to get our child better. So, I don't know. Sounds like she is very knowledgable on alternative meds.

Ok, the instruction manual the hospital gave you when your son was born - the one that told you how to do all this stuff - did you lose it? If so, you have every right to be down on yourself. If you didn't get an instruction manual, then you're no more of a bad parent than the rest of us. I hear you on the overwhelmed feeling. I was there last Friday. Thankfully, starting milk thistle took things down to a manageable level again. But it's easy to feel like you've been run over by a freight train. We do not do a GFCF diet - would never happen in my house. DH and kids would sooner starve (or sneak out to McDs) then give that one a try. I personally wouldn't experiment with herbs on your own - they interact and change balances and I think you can do more harm unless you know what you're doing with them. Same with the supplements. They're not harmless candies. People take them because they're supposed to change things in the body. Someone who's treating the patient is, IMO, the one who should be guiding you. So I think it's good you're considering a professional and not doing a lot on your own, at least not before doing a great deal of research on each one. That said, I also understand the cash hemorrhage. None of this stuff is cheap. So you do what you can and focus on baby steps. Prioritize what works, what you can afford, what gives you the most bang for the buck, what's covered by insurance, etc...Then do the stuff you can and try not to beat yourself up over the rest. You are not super human. You are doing your best. And while that may not feel like enough some days, it probably is. We all have warts, we all fail sometimes, we all have regrets. But you just keep moving forward and loving your child. Thanks. I appreciate it. Do you work with just one Dr. or more?

I don't live in MA but my family does and I just saw this post and am having my father who lives in Newton, call and/or see what he can. I have an appt. thurs with a ped LLMD in albany, ny but am keeping my options open. I also have an appt with DR.J in CT in April. I trust was he does but I don't think he addresses detox and other immune stuff so I am so confused as to who to go to. Kathy

I'm taking a day to just do detox and probiotics for my son. He is not doing well. Like really bad. Worst couple days yet. I am a bit overwhelmed today. I have been keeping it together but not today. I am not doing all the things that seem to be recomended for a really good recovery. I am not doing a GFCF diet. We did that for a year in the past and son refuses. Can't blame him. I am not incorporating any herbs that do sound like they are a good idea. No direction on that yet. I am not giving probably the right amount of supplements I should because he reacts to so many. Tics flare. I am overwhelmed and under supported professionaly at the moment. I don't think the Ped LLMD will be enough even though I do need a LLMD. There is only one Naturopathic Dr. here that is probably any good and I am not sure I can pay out of pocket any more. Feeling sad, Kathy

Wendy, I am very interested in this comment. I can't find info on mom2alex. Was the cholestryramine given because her son had poor detox paths? My son has the HLA-B27 gene type and after reading the article I am wondering if this is making his ability to detox harder.

Thank you, very helpful.

We have been using one or two lemons a day in water. Son will drink this and I know it is good for ph. But wanted to add milk thistle at 4th weekly intense herx. Yes, after all this time not putting things together, I can now see a pattern. I read you should start low, maybe around 100mg or so. I bought Gaia milk thistle. seems very pure. Son is almost adult size in height and weight. Also, can you take this with other supplements?

Wow, thanks for taking the time to tell your story. Very inspirational.

Yes, our appt is 3/31. The peds and I started the rifampin a week ago. My peds saw his bartonella rash and son has been on cefdinir since end of Jan so we thought we would add rif and go back on zith. Interesting thing when we started rif, the first few days were so positive. It gave me a look into how things could possibly be after. I hope. The appt I have is with a Pediatrician who had lyme herself and is rec by ILADS. She did work under Dr.J of CT for several months. I may or may not like her approach. I do have an appt with Dr.J in April just in case. I only know that DR.J uses rifampin for bartonella from what I have read. Not trying to be my sons doctor, tired of steering this ship for 2 1/2 years, but just wanted to get started.

I was told that the first two weeks are usually the worst. Wow, so true. I hope this lasts only the 2 weeks or so. Please!!!! If it doesn't I don't think I could bear to see my son suffer to much longer than that. This has brought on some symptoms and made others intensive. I would love to hear positive outcomes from adding this to the mix, adult and child. Keeping my fingers crossed. kathy

It looks like you have a good probiotic. My son seemed to not tolerate the sacc b. I did have to stopped that one though. Some one on the board said they have to alternate one day bentonite clay, next probiotic. Maybe that would work. If your just using bentonite clay wouldn't your son take it?

Bill, you may want to play around with some other probiotics. I believe one very important aspect to healing my 13 year old Lyme/PANDAS son's gut is the probiotic I finally bit the bullet to buy. How long has he been on one? What kind are you using? You will find that it takes much more billions cfu and a better product to really help these kids on high dose antibiotics. I personally wouldn't stop for to long. 80% of the immune system is in the gut.

Yes my son does have Bartonella. The red/purlple stretch marks came out full force once we started omnicef. I have since convinced my Peds to start rifampin and zithromax. Day one of the latter. With my son it is the joint pain and fatigue that have stopped him from going to school. I'm holding my breath to see what happens with the zith and rifampin. I'm prepared. Son's tics in this past fall were the worst ever.

Prayers to you as well.