lismom

Im right there with you. With Lyme and coinfections plus HHV6, it seems near impossible for the body to fight this cronic fatigue symptom. It is the one symptom we're struggling with. Does the body have to lower the primary infections before being able to battle the herpes? Anyone with good results with antiviral I'd love to hear it!

Could you elaborate on the difference you feel on it and off? Thanks, Kathy

Kathy, Have you seen a decrease in your son's ASO titers since doing the grapefruit seed extract? My dd's titers have remained in the 500's and it is so frustrating to not see that number go down even more. yes slowly they have gone from the 500's as well to the low 300's. It makes sense finally why these were constant. You are reinfected after each cyst cycle and biofilm.

We use grapefruit seed extract and have been for close to a year now. It has the herxes. It packs a punch. My son was on antibiotics for almost 2 years before we started treating for lyme. I know he built up the cyst form. We have been able to follow this through his strep titers. Strep is gathered in these and biofilm. It made so much sense to me as to why my sons titers kept fluctuating and still remaining. I have seen slow progression over time. I have pulsed this differently thoughout the months. Sometimes taking time off. It doesn't hurt that it treats candida as well. I'm sure occasionaly there is die off from that. Kathy

I know this topic has been brought up before but i hope some can share what they are using with no major symptom increase. Thank you, Kathy

Hang in there. It probably means the abx is working. Insomnia is a classic bart symptom. My son was up until 3 or 4am for quite a while. Suddenly, he was then able to have a normal sleep pattern. You have to give the abx some time.

Lismom, What causes the fainting, do you know? Thanks! For my son I believe his blood pressure was low. Before I knew it was lyme/bart this was a piece of the puzzle that just didn't fit PANDAS. He hasn't had this prob since treatment. I know though that lyme can deplete minerals/vitamins and cause low blood sugar.

Some of my sons first symptoms were facial tics and periodic fainting spells. Thought PANDAS, 2 years later lyme. Vacations in Cape Cod and Nantucket.

Hi there, its Kathy and liam. You hit the nail right on the head for us. First off I'll start by saying I am in the process of a 504 being approved for liam. We are still not quite at a year for treatment and fatigue has its absolutely dibilitating moments for him, and lately he has been going to school maybe 3 days a week. And yes there are times where he his happy to see his friends on the weekend and probably pushes himself to do it and is wiped out the day after. I let him have those times because I know its importtant for his mental health. He just finished 8 months for Bart and we switched up meds for lyme for the time being. He is actually having moments where he is better than before. Fatigue has been our biggest battle. Compared to 1 year ago I'd say he is about 60% better in that department. For us to be honest nothing has help except for time. The supps I did try just messed things up in my opinion. message me if you want. kathy

My son was on mino and rifampin for 8 months for bart. He herxed for 8 months. We decided to change up to treat the lyme side of things for a while. He had started to get more "sickly" and it seemed like the lyme and pandas symptoms started to flare. He is actually doing fairly well right now after herxing from the med change. We will probably do cipro down the line.

I wasn't prepared again. I keep thinking, ok the next set back with med changes I'll be ready. No. Well maybe a little. The bumps in the road for lyme are huge Boston Massachuestts pot holes. I feel disoriented. Keep telling my son hang in there. First year of high school is challenging enough. Thanks for the vent. kathy

If anyone has any comments I would love to hear them. My son was on rifampin with mino to treat bart for about nine months. His body needed a break from rifampin. Getting depressed and seemed sicker. LLMD thought that lyme may be coming out more now so time to switch meds. I am puzzled as to why changing to augmentin xr and staying on mino would bring out the bart rash full force again. It had faded. Thanks, kathy

Laura thats fantastic news. Your persistance has been rewarded. Momcap, just wanted to let you know we are right where you are. We changed meds, and an old tic reappeared. However, I have to say that even though some tics are still around, and its been 9 months for my son with treatment, they have gotten milder and milder. And the one that reappeared is actually better than the one that just left. Fustrating I know though. The tics are relentless! Kathy

Oh my goodness. We use grapefruit seed extract for same purpose and it kicks the you know what out of my son. I waited two months to start up again because he just started high school this year and I wanted to let him get the first couple months under his belt before some more herxing. I only gave him some, medium dose, for two days and he was really bad for three days after. I think I am going to do two days every other week for a while. I know it works but.......

I ditto seeing a LLMD. You'll need more than amox. My son has had finger movements as one of his motor tics. It comes and goes. I have also seen his toes do this.

Yeast die-off can be as bad as any of the other die-offs. You can see the extact same lyme symptoms, amplified symptoms and new ones. I would suggest using something to soak up the die-off, charcoal or bentonite clay and if its that bad go slower. What probiotics do you supplement with?

Tindimax kills the bacteria from what I was told. Why the pull off antibiotics? didn't your daughter just start?

She takes augmentin xr and doxy? I dont think my son took both at the same time. My llmd put him on augmentin xr when I told him that having to take all those pills before school was making him sick and he was getting sick by the time he got to school. With augmentin xr he only had to take the pill w dinner. Good luck with the augmentin xr. I was told the dosage is 1000mg 2x day. Sound right for a teenager?

I just wanted to know if anyone is using this in their arsenal. We've attacked bart for 7 months and have seen improvement. However, time to add as we are in a state of holding. Little things creeping in. I think lyme is now coming to forefront. I have used ceftin at the beginning. But heard good things about the properties of augmentin xr. Any input would be appreciated. kathy

thanks so much for this. Can you tell me why the ge extract? Are you also doing treatment for the lyme/Bart? The gse extract is to address the lyme cyst form, yeast if its there and biofilm. I decided to use this instead of tindimax for the cyst busting. Just personal preference. I've used it for a while now and see something everytime so I know its doing something. And yes my son is on mino and rifampin.

Yes we have motor tics along with some typical lyme/bart symptoms. Some symptom lists have it classified as twitching but to me they are tics. My son has specific facial tics which is on the long list of symptoms. Throughout the last 3 years howvever, he's had mild vocal and body tics. I've seen them come, go and change. Right now I've added in grapefruit seed extract again, (I'm pulsing) and each time I see the tics leave and fatigue come. I believe the body reacts the same way it would with PANDAS.

Are you also treating for co=infections? It took my son over six months to shed the worst symptoms. He still has some minor lingering symptoms, its been eight months.

Interesting. 2 years ago before lyme/bart when I thought it was PANDAS I had my son on supplements for his tics. They were stable, just barely, but I decided to add nac. His tics went crazy. I thought it was a methylation problem but it could have been busting biofilm and spilling. Maybe makes sense now. Now when using GSE for cysts and biofilm, I see similar tics, just not quite as intense as we go along.

Ceftin decreased my sons tics to zero. Loved it. Then had to add rifampin and mino for bart. Explosion. 6 months later he has mild facial and throat tics. Going to add ceftin back in next month. Since cyst busting I know some strep has been released along with other things. We had blood work done in the middle of cyst busting and his titers were up. This truly is going to be a marathon.