No real improvement after 6 mos. (Lyme)

[tu4four]

Wondering if we should continue down the same path. We have an appt with our llmd again in one month. I love our doc. He is the only one who has taken Us seriously and treated aggressively. All 6 members of my family have Lyme. Dd11 is extremely affected for 7 years--on psych mess for 4, , has PANDAS. My dd17 is in the middle of an episode with Lyme--which is how it goes with her. Usually involves a swollen joint, but this time no. More chest pain than ever before. OCD, heart rate as low as 36. Had an abnormal EKG yesterday,... I am havi g faith that Melton, Zithromax, cefdinir and a couple of supplements will be helping her.

 

My dd11 who is mainly psych affected, though....I just have rarely seen any improvement whatsoever. And when she did improve a little--ie--sleeping--she quickly lost it. She is so difficult to live with, very ODD can't function academically--specifically in mAth --we homeschool. Constant yelling, fighting, etc. I feel like we are In Dante's inferno...always some level of .

 

We have treated for viruses, etc. . We are in Texas and see a doc not on the coast---I love him and think he can help us, but any ideas on why no real improvement?

[philamom]

have you looked into co-infections, esp. bartonella.

[tu4four]

Yes, she has bartonella and babesia...I don't know about anything else..I sometimes wonder about west Nile as she had a ton of mosquito bites as a toddler.

[tu4four]

And she is being treated for those with Mepron, a-bab, a-Bart, Zithromax artemisinin. Is there something else I'm missing? She has been complaining that she doesn't feel we'll..stomach, etc.

[rowingmom]

You haven't really pulled out the big guns abx-wise. For bartonella positive, lyme IND our daughter was treated with 1 year of continuous biaxin/rifampin with pulsed tindamax added for the last 3 months. Tried to wean abx, but relapsed.

 

Then our LLMD used malarone (assuming babesia was a problem, although DD had no symptoms and tested negative), plaquinel, minocycline, zithromax, tindamax, at first all continuously (except tindamax which was still pulsed) and then all pulsed, 4 days on, 3 days off, because DD couldn't detox fast enough and symptoms kept ramping. This was when she really improved, so I think a protozoan of some sort could be involved.

 

During this whole time we used Japanese knotweed because Buhner says that if there is only one herb to take for these infections, this is it, to help decrease inflammation, especially in the brain.

 

DD used hugely high doses (30 drps BID) of A-Bart for 6 months, but bartonella remains - her herbal herxes are all bart. I'm not sure if it helped or not. We are back on it with Buhner herbs, but just at a low dose. I can't seem to get her past 2 drops BID, but on low dose she does well.

 

Many people think treating for parasites is necessary. We haven't really done that yet.

[mama2alex]

It sounds like there's something going on that's preventing her from healing. Have you done the 23andMe testing or just tested for MTHFR? Looking for any other methylation defects and treating those could help. I read one of your previous posts saying your doctors weren't really on board with this, but I think if you read the first 5 chapters of Yasko's book - http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf - it might help you understand why these genes matter for our kids. Some have found that KPU is a roadblock to healing from Lyme. Personally, we found that mold was a big issue for us, and after moving out of our house and treating with cholestyramine, we are both doing better.

[lismom]

Im on page with rowingmom. The bigger guns such as rifampin are the only thing working for us. Rifampin/biaxin xl. This is the second round of rifampin from 2 years ago. Cyst busting is rough, i can only give one dose of tindamax one day a month. Zithromax did nothing for my son, and without cyst busting, the 1 1/2 years we were on zithromax for pandas, turned the lyme and bartonella into cyst form. For some less invasive cyst busting and yeast control, I use grapefruit seed extract. Bartonella symptoms have been devastating at times when we weren't using the combinations right for us. You may have to find another combo.

[LNN]

I was going to write what Mama2Alex wrote. When my DS had been doing lyme treatment for 8 months, he was better than where he started but no where as well as other kids who'd started around the time we did. Something was holding him back. He tested positive for KPU (aka pyrroluria) and three days after we started treating, my DH looked at me and said "what you'd do to our kid?!" (in a good way). It took 5 months to get up to the dose of Core that he needed (you need to go slow, as you will see herxing as the immune system grows stronger). But from then on, he was better able to fight the lyme and we saw more sustainable progress. He then got stuck again at 90% and Yasko/methylation/23andMe got us to 100%.

 

If your DD is stuck, there's a reason. Perhaps stronger/different abx or perhaps other things in addition to the lyme need to be addressed. But hang in there. You'll find it!

[lfran]

What is Core?

[LNN]

Core is a supplement developed to treat pyrroluria http://retailbiopure.me/Core-240-Capsules.html When DS started it, it was like someone literally turned on a light switch in his brain.

[lfran]

Thanks!

[frikfrak]

LLM - was your son also taking other supplements when you started Core? namely zinc already?

 

How did you know what the correct dose was?

 

Did your LLMD suggest Core? At what dosage to start?

 

Sorry for all the questions. Just went to an ART doc who said my son tested positive for KPU but didn't put us on anything for it.

He only suggested a detox protocol.

 

Thinking of trying this for my DS.

 

Rowingmom - You stated you always used Japanese Knotweed, do you think this helped?

 

I recently started my DS on it as well....up to 2 pills 3x a day, we use the pills from Green Dragon Botanicals.

 

Would you mind telling me which brand you use? pills or powder? how much?

 

thank you

His Mom

[LNN]

LLM - was your son also taking other supplements when you started Core? namely zinc already?

 

How did you know what the correct dose was?

 

Did your LLMD suggest Core? At what dosage to start?

 

I'm sure he was taking supplements at the time but not zinc. Yes, our LLMD put him on this.

We started with one capsule daily for a month. We saw improvements in the first few days.

At the start of the 2nd month, we went up to 2/day. Saw some blips as his body got stronger and was better able to detox/fight infection, etc. but nothing severe.

At the third month, we went up to 3/day and this produced some blips we didn't like and didn't seem to go away. So we backed down to 2 again.

At the fourth month, we went back up to 3/day and he handled it well and we saw additional cognitive and behavior gains.

At the fifth month, we went up to 4/day and saw some more improvement. You're not supposed to take more than 4/day.

We stayed at 4/month for about 6 months. Then I backed down to 3/day mostly due to expense and pill load. He does well at 3, tho I bump up to 4 when he's fighting a cold, just to help the immune system.

 

I also have KPU and to save money, I take high dose zinc and P-5-P as separate supps plus one Core/day to get the other minerals. My sweet spot dose is determined by how well I'm dreaming. If I take too much, i get weird dreams. If I take too little, I can't recall my dreams. We also periodically do a "zinc challenege" - we take 10ml of this http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_1?s=hpc&ie=UTF8&qid=1381067799&sr=1-1&keywords=zinc+challenge According to Dr James Greenblatt, if you can taste zinc, you have enough. If you can't taste it, you're deficient. In most months, if he's been taking 3 core, he doesn't like the taste of this stuff, which tells me he's getting enough. But if he drops down to 2 core for awhile, he thinks the stuff has no taste.

[T_Anna]

Tu4four, maybe run a blood tests listed under the thread "Going to Mayo Clinic" you might be dealing with a more aggressive form of autoimmune encephalitis.

 

T.Anna

[PowPow]

Tu4for,

We did a similar Lyme treatment plan. Cdc pos lyme and babesia.

My daughter was a mess. Very very severe.

Five years post onset, we finally have figured out what is wrong. We had come to the conclusion it was an autoimmune prob, after much "detox", iv abx for lyme, integrative med did not help that much. Steroids did. PEX did.

My daughter was found to have an underlying autoimmune disorder.

I gave up on the Lyme avenue when my daughter became so ill she would not take any meds or even let us access her picc line to flush it. We had no choice but to stop.

I thought it was the end of all hope for her. However, the change in treatment focus was precisely what was needed.

Like t.anna said, the recent Mayo Clinic thread may help you.