nicklemama

Thank you! This is a gem! When the rest of the black community realizes all the implications of forced vaccination, I believe we will see the tide turn again.

I took Levofloxacin for 2 months to help me get rid of bartonella. My LLMD also had me take high doses of magnesium (400-600mg). Use only magnesium taurate, malate or glycinate. Other forms are not readily absorbed. I also was told to take 100mg of B6 (P5P) twice a day. This is to mediate the possibility of tendonitis/rupture and also to mitigate potential neuropathy that can occur taking levofloxacin. I would also recommend taking high doses of Alpha Lipoic Acid. I am still taking 300mg, 3x a day. My integrative doctor recommended adding the ALA. I was also told NO jumping, running, lifting weights or doing ANYTHING, other than walking due to risk of achilles tendon rupture.

When bacteria are killed off, they produce bio toxins and you can see reactions, such as you are seeing with tics and a worsening of symptoms. This is called a Jarisch Herxheimer reaction. Things will get better. Unless you have tested with a lab like Igenex, the Lyme testing done was worthless. My son was originally diagnosed with PANDAS back in 2010. With proper testing, we learned he had Lyme, ehrlichia, anaplasma and bartonella and have been treating that and finding a lot of success.

That sounds suspiciously like PANDAS. Is he still symptomatic? If not, I would document this and keep a very close eye out for symptoms to return, especially if he has another illness or if he's exposed to illness, particularly strep. If he is still symptomatic, as in having these intrusive thoughts, I would skip the therapist and find an expert to evaluate him for PANDAS. If the intrusive thoughts or other symptoms of OCD, anxiety or tics pop up again, I would take him to the ped and insist on testing for strep and I would find a PANDAS expert to guide his treatment, strep positive or not.

Wow, thanks for thinking about us. A lot has happened in three years. After IVIG twice and relapsing, I took my son to an LLMD 2.5 years ago. He has Lyme, ehrlichia, anaplasma and bartonella. Treatment has brought the healing we were looking for. He is still being treated with antibiotics and supplements. He is as normal as the next kid. He can get hyper and overstimulated by other hyper kids but no one would tell you he acted out of the ordinary for an 11 yo boy. He goes to middle school in a few weeks and he's going into the academically gifted program. I urge you to find a good and reputable LLMD to do a thorough evaluation and testing of your son. Unless you see someone who truly knows and is qualified to diagnose Lyme and co infections, you will not get a proper evaluation for Lyme. Have you seen a PANDAS doctor? After my experience with my son, I would never accept a psychiatric diagnosis until PANDAS, PANS and Lyme/co infections had been thoroughly ruled out by qualified doctors. I wish you the best in your search for answers and healing. Contact ILADS for recommendations for doctors in your region. I'll send you a pm.

I've been on the same journey. IVIG with Dr. K. Only temporary relief. My son has Lyme and bartonella. We just started treating bartonella after two years of Lyme treatment. My best advice is to start put slowly. Dont give all the antibiotics at once when you start. Start one and dose it once a day for a week, then add the second dose for a week and work up until you can give the full dose, then add the next antibiotic in the same slow way. I use burbur as a detox. His doctor recently added activated charcoal and MediClay to be given once a day, between lunch and dinner on an empty stomach. I'm waiting for my order to arrive. My son has never had a bad herx from starting out slowly. We are upping his detox as we are seeing him start having tics from the bartonella treatment. I also have Lyme. I have a different doctor than my son but my doc also does the slow building of antibiotics to avoid a bad herx.

Try magnesium. Only magnesium taurate, citrate or glycinate. Other forms aren't easily absorbed. Start with 100mg and work your way up. I take 600mg at bedtime. I sleep better and I don't get leg and toe cramps. You will have to find th magic number of mgs 100 at a time. Magnesium will also cause loose stools so go up 100 mg at a time. My doctor recommended this to me. In addition I also take a bioidentical compounded progesterone at bedtime.n this combination has me sleeping like a baby.

We have online options in our county.

Yes, I agree Rowingmom. When I say Lyme I am implying Lyme and or coinfections. I use that term because most recognize it. Fact is, my son actually has MSIDS. Multiple Systemic infectious Disease Syndrome with Lyme and coinfections at the root of it all.

I came to this board in 2010, after my son had been suffering for a year without treatment. I was encouraged to seek treatment, even though my son never had strep and his titers were normal. I traveled out of state and treatment started helping but he never got really well. All during this time, any suggestion of looking for Lyme was met with strong opinions and objections by many and people got quite nasty about the mere suggestion of looking for Lyme, so I stayed the course with PANDAS and the board spun the Lyme group off separately. In two years, I spent tens of thousands of dollars on IVIG and expensive PANDAS providers out of state. My son got marginally better then relapsed after each IVIG. I found a local doctor who was beginning to treat PANDAS. She was also treating kids with ASD and quite a few Lyme patients unbeknownst to me at the time. She suggested to me my son needed to be tested for Lyme and coinfections. Surprisingly, he came up positive. It really bothers me, nearly five years later, to see others so easily discount and discourage a look into Lyme. I waisted valuable time and money by not looking into all infections before pigeon holing my son and taking even more time to achieve wellness. I sincerely hope this board is not going to go down the no Lyme road again. It's a disservice to every child. I don't know how long Sirena has been at this. She doesn't say in her signature. What I meant above is, if PANDAS treatment is not working or your child is relapsing and not achieving a good and lasting wellness, it's time to look at other things. Treating PANDAS does not treat Lyme, of that I can tell you absolutely and for certain.

Before I tried Abiify, which is an atypical antipsychotic, I would consider something with less potential for side effects, if you havent already. My son was on Lamictal for a year with good results. Lamictal is an anti seizure medication with a wide margin of safety and tolerance. It also has antianxiety properties and regulates brain glutamate, which can cause some symptoms in our kids. Lamictal has to be titrated up slowly to avoid a potential allergic reaction.

When PANDAS kids fail to get better, it's time to look at Lyme and coinfections. Been there, done that.

I sent you a pm.

I've heard this story too and I was the one telling it. My son was adopted from Russia as a 6 month old and he was a perfectly typically healthy 5 yo, when he suddenly wasn't after a flumist vaccine. Doctors told me it was adoption issues (which he had never had previously), then aspergers or bipolar, again, never had one symptom of either previously. Do NOT let them tell you its adoption issues. I urge you to explore PANDAS/PANS and the possibility of lyme disease. To make a very long story short, my son has PANS/lyme disease. I am from Michigan and I cannot recommend Dr. Chugani. He does not know PANDAS, although he likes to think he does. He does have an experimental CAT scan he's working on but its not reliable, at this point. He does not treat many PANDAS kids in Michigan because he has his own strict definition and your child must have tics and chorea like movements. He does not prescribe abx. If he decides your child has PANDAS, based on his criteria, you will be treated with IVIG. PM me and I'll give you some more information on treating physicians.

I guess I can skip most of my comments on DTaP since that has been fully covered, lol. It doesn't last and is not particularly effective the pertussis part. I think the meningococcal is required in my state but I could be wrong. Anyway, no, my son will not get it. He does not live in a dorm type environment. That makes him even less susceptible than worried dad listed. This vax started out for college students. Now they want to give it at 11 so they can make more money off kids not going to college, just my opinion. HPV. Not a chance in I'll give this one to my son. My son is 11. In my state, these are all given at age 12. My son will not be getting any of them. This mess we are in started after a flu mist vax.

Thanks Kim. We've done 23 and me testing. I don't see any of these for DS. His doctor drew blood for HLA testing last week. She told me she's been having success getting it covered by insurance.

In hindsight, my son displayed PANS symptoms after his second MMR and varicella at age 5. It lasted about six months. Then he had a flumist in the fall and fell into PANS . Now we know he had Lyme and co. He will be due for DTap and meningococcal vaccines in a year, at age 12. There is no way he is getting vaccinated again. It's really something every parent has to weigh the risks of. I'm not going to risk it.

I am so sorry you've reached this point. My son has similar snps. Before we knew about PANS, we tried Celexa and it was a disaster. He was then placed on lamictal. It tamped down the anger,irritability and rage. I recommend asking him to be placed on lamictal. It takes many weeks to slowly titer up lamictal because it has an adverse reaction when you go too fast. Lamictal is a seizure med that has anti anxiety properties and its frequently used in the bipolar. You could use risperdol tpn until you get where you need to be on lamictal. My son has Lyme, too.

You need to find a good LLMD to guide you. Contact ILADS for a list of names in your area. Join some Lyme groups to get recommendations.

Have you looked on pandasnetwork? It has a provider list by state.

This, in my mind, is the worst part of PANS. I could deal with the other stuff but the aggressive behavior made for a very stressful house. My son was very aggressive, angry and rageful, at times. Predicting those times was difficult in the beginning. As I better understand the. Nature of his OCD and rigid, inflexible thinking, I better avoided setting him off. Honestly,discipline was basically off the table when he was not dealing well with things. Taking away an iPad would have caused a major explosion. We just walked on eggshells until things passed. He was 5,6,7 at the time. I can't imagine how I could deal with that now at age 11. If the aggression is that bad, I highly recommend you make sure to rule out Lyme and co infections as the source of PANS. In the end, that is exactly what my son has and treatment has helped the tremendously.

I think you are in Canada. Let us know exactly where so we can guide you to doctors. Few of us have pediatrician helping us. Most of us go to doctors willing to help and that is where you need to head.

It could very well be a supplement. My son reacted poorly to transfer factor. Bartonella causes raging too.

This is exactly the response my son had to both his IVIG's with Dr K. The second just didn't work. I took him to see an integrative doc who has tons of experience with kids having infections. She tested him for what must have been everything under the sun,minfection wise and he had Lyme and coinfections. Treatment for those has brought lasting, long term improvement,mwith small,majors flairs. No one wants to hear Lyme. Trust me, I get that. I didn't think it possible in my son and I was wrong. You need to take him to a doctor that will be very thorough in testing of infectious causes, viral and bacterial, and who will run Lyme tests that are more accurate than the standard CDC recommended.

I don't know specifically what a high anti tubulin means but my sons was high as well. It was the highest of the 4. I was interested to read what was posted from the Cunningham website. I've never read that before. My son was in the research study and had the panel in 2010, just after starting treatment. You can google anti tubulin. There are several papers on it. It's thought to be linked to movement disorders. My son had chorea like movements rather than severe tics. He was primarily OCD, anger and emotional lability before treatment.