Son with Autism and Bart

I am new here, but I found out I have Bartonella a little over a year ago. I figured out I had it when I was pregnant with my now 25 year old son. (Thought bart marks were stretch marks from my pregnancy)

My son is autistic and I have been scared it was caused by my bartonella. I am very disabled from my bart now, and have been thinking I would ask my doc about it when I was a bit better.

Well we have my son for a visit today (he lives in a group home) and he showed me some stretch marks that I know are bart marks. I am freaking out about it.

He is on SSDI because of his autism, I am worried about the cost of treatment and if his treatment will be covered at all, not to mention all the supplements. I am not even going to get into if he will tolerate the treatments...

We are a financial mess thanks to my treatment, and we think my husband may have CFS, on top of everything else. So I don't think we can do anything to help my son. I am devastated by this.

I have been sick for a long time, but I have never felt this helpless or scared.

Do any of you have any experience with bart and SSDI? I know this is a lyme forum, and we don't have it, but I didn't find any active bartonella groups. You guys seem to know a thing or two about bartonella, so I thought I would ask here. I am going to call my llmd on Monday, but I am literally feeling sick about this, and Monday is a long time away.

Girlie-
I was planing on introducing myself properly, but as I said I am freaking out about my kid, so it pushed me to posting before I formed everything I have going on into something cohesive.

In short (kind of), it started with foot pain, I mean I can't walk at all without massive pain, had several surgeries, no improvement, told I had over active nerve pain.

I had crazy nausea for close to 6 months dxed with spastic esophagus, and GERD.

about 10 years after the foot pain started, like 6+ years ago (I am fuzzy on exactly how long I have been this screwed up) I woke up with fibro and arthritis in my pointer finger (seriously it was literally overnight), dxed in two weeks. It's funny now, but I was relived to "know" what was going on.

After that, I just kept getting worse at a rate way faster than anyone on the Fibro boards did. Got geographic tongue and Hashimotos, complete with goiter (it's small, thank goodness) Started having tingling and vibration in my limbs, then I fell down the stairs while I was over medicated on lyrica, tore a ligament, my ankle never healed. Stopped driving because of it. Developed burning feet a few months later though it was CRPS, I don't think so any more, but I still get it.

Started brain fog, also dry mouth, eyes, and skin around then, blamed it on the meds I was on. Started having bad joint pain (knees), burning skin, a kidney stone, and my full body pain was just horrible. Also about 3 years ago I dxed myself with Histamine intolerance... Kept talking myself out of lyme. Finally I looked it up and talked to my MD about it, she actually referred me to my current LLMD.

He tested me for everything under the sun. He took so much blood the nurse misread it, and only took half and I had to come back the next day, and still by the end, my vein was barely filling the tubes. He took a weird picture of me that was like in negative, it showed a tree like pattern. under my skin He told me to get ready for a Bartonella positive, to him I was a classic case, complete with my very obvious bart marks. I was shocked, and very foggy at this point. Tests came back Bartonella, Yersina, and Salmonella. I now test negative for everything but bart. I have developed Sorjen's in the last year though.

He did test me for Lyme, he didn't think I presented with lyme, and I came back negative. He uses Quest and Galaxy labs, so I didn't have the crappy test I keep reading about. He treats a lot of people with lyme, but told me he has been getting about one new case of just bart a week in the last year and thinks it's on the rise...

I know even the best labs are iffy with lyme, but he does seem to know what he is doing. He comes up with something that to me seems crazy, and sure enough, when I try it, it works. I have been just too foggy to dig into everything he has done, but I am almost to the point I can, and I plan too.

I have only been treating for a little over a year, but most of it was pure hell. I have just started to feel a bit better. I am detox compromised, and everything I add makes me herx like crazy. I can't even soak my feet in Epsom salts cause my ankle feels like it is going to explode while it is on fire. He has me on Chlolestyramine, it seems to be helping. He wants me to go for magnesium and ozone infusions, but I cannot wrap my head around going out twice a week for that. Any ride in the car equals more pain for me.

My pain is just crazy, and I am impressed I have not killed myself over it. (I am not suicidal, but I feel like I should be, if that makes sense.) We have bought softer furniture, several times at this point. Any pressure hurts me. Unless I am leaving the house I don't get dressed, ever. I only leave the house for doc appointments, I can't even take out the trash any more. Sorry I think I am off track now, but I don't think even my doctors really understand how totally disabled I am.

Still I have been dealing, then slowly my husband has started coming to terms with his total exhaustion. For him it started in his early 20s. We are in our late 40s at this point. We still don't know what is going on, he has an appointment with my LLMD in August, we need to rule everything out. He is my total caregiver, including cooking my super weird diet, and the house breadwinner. I am very worried it is chronic fatigue and everything he has to do is making him worse. I was just dealing with this blow, when my son pops up with his "stretch marks". He has had numbness when he gets up for a while now too. He says his foot, ankle, or leg falls asleep. It happens a lot. Until I saw the marks, I just thought he was exaggerating, he has a history of doing that. My son is an entire post himself.

This took me way longer to explain than I thought it would. I have to go to bed, I am getting up with my son tomorrow at 6 and I have to take ambien to sleep. Should be a fun morning!

Please feel free to ask me anything you want, I will be happy to answer anything I can actually remember the answers to.

Hi acarined,
My son has like no budget. He gets $130 a month for his personal use (any fun or clothes). Other than that the home he is in gets everything for his room and food. Up till now all his medical costs are covered by Medical. This is standard where I live. This is the third home he has lived in and they are all the same. He is more like a pre-teen in behavior, and I have conservitorship of him, so if he doesn't want to be treated I can over rule him. I have so many things I am worried about with him though. He has been violent through most his life, we got that under control a few years ago, with the exception of what seem like every few months he will have an episode. They had to call the police on him one time. I don't know if they can deal with him if he gets super violent again during treatment. I can't do it now, I can't even function at this point. They have homes that are coded for violent behavior, but we have fought to keep him out of that situation for so many reasons. When he isn't raging he is really caring and funny.

My husband has had thyroid check, they put him on meds, even though his thyroid is normal, just to see if it helped, it didn't. His adrenals were a bit low a couple of years ago, treated that, no difference. He has sleep apnea, for a long time we thought that was the problem, but every time he goes in for a check, his machine is working like it should and he never sleeps with out it. He recently tried going Whole 30, cause our GP recommended it, he found some foods he reacted too, but it made no difference in his exhaustion. Last thing we did was test him for narcolepsy. They say he didn't reach the dream state fast enough to be positive on it, his sleep doc is calling it idiopathic something or another. They gave him low dose provigil, after the first three days of some improvement , it stopped working. He is trying to get up the energy to call and have them raise his dose (as per instructions), but everything is like swimming through syrup for him... I finally convinced him to go get checked out by my LLMD. Even if it's to rule everything out. That is where we are with him.

As for my diet, I went on a low histamine, high anti-inflammatory diet about 3 years ago, stopped eating meat cause I always reacted to it. It has helped with a lot of the Mast Cell issues I have, as long as I am strict. My llmd says it's full on mast cell disorder caused by the bart.

Just recently he noticed I was WAY to acidic and now I am trying to only eat alkaline foods that are histamine friendly. Then a little over a month ago I thought I would try spinach, cause it's super good for alkalinity. Big mistake! I thought I was having a heart attack, all my bart symptoms went through the roof (I get heart palpitations). It was like I had the mother of all herxes, but all I had was spinach. I see my doc and he immediately asks what I ate, he told me to stay away from iron, bart feeds on iron.

So now I am pretty much just eating certain vegetables, cashews cooked in to sauces, and watermelon, I don't seem to react to it. I was having regular kidney pain before, and I would have flair ups of bart for no reason I could figure out, turns out it was the iron in the lentils I was eating regularly. Things are calming down now, and my kidney pain is getting better, but it has taken a long time to get over the spinach incident (as I now call it).

Oh I forgot to say earlier, that I do think it is bart because I was in a bad situation starting when I was 17. A super long story, but my boyfriend (who I was living with) had a million cats. We had fleas so bad they killed a litter of kittens. Sorry, I know it's a terrible story. He refused to get them fixed or take them to the vet, so they were practically strays with a house to live in. This is when I think I got it. I am not an outdoors type of person, and I live in California. This was all in the late 80s/ early 90s.

Sorry I know my posts have been long so far, but everything is so complex in my situation, I don't know how to explain things with shorter posts!

bvt and houttynia tea is about 30$ a week ...zhang is pricey ...little bit oil of oregano in a cup of whole milk in hot bath can be effective way to start also

I read everything you wrote. Here are my comments:

- Welcome and very glad you posted.

- I'm very sorry for the suffering you and your family have endured for so long.

- I believe there is always hope and something we can do to get better no matter how long we've been sick or how complicated our situation has gotten.

about your son:
- Rage is a strong symptom of bartonella, in case you didn't know.
- Recommend he get on Japanese knotweed if nothing else. You can buy a 1 lb bag for about $25-$30 that will last for months. That's affordable.
- Recommend getting Stephen Buhner's books Healing Lyme, 2nd edition and his bartonella book (yes, even if you don't have Lyme). His books contain a wealth of information and herbs to treat not only the infections, but also symptoms. This could be very helpful to your son given his financial situation.
- If Medicaid will not cover an LLMD or treatment, consider consulting with Buhner's herbalist partner, Julie McIntyre. She has experience with difficult cases and violent behavior. She could be immensely helpful. Don't know how much she costs, but much less than an LLMD I'm sure. She will do phone consultations.

about You and Husband:
- Are you being exposed to mold in your home?
- You mentioned cholestyramine. That is a pharma binder used for mold and biotoxins.
- Have you done an ERMI test from Mycometrics lab on your house? If you haven't, then I urge you to do so. The cost is $300. It is worth every penny for someone in the dire health situation you are in. The fact that you continue spiralling downward with more and more diagnoses and now your husband has CFS raises HUGE red flags to me about ongoing mold and/or mycotoxin exposure.

WalkingbyFaith- Thanks for sticking in there and reading my crazy long posts! I have Buhner's Bartonella book, I was going to try and read it before I got the Lyme one. I just haven't been mentally clear enough to understand it yet. I am part way through Horowitz's "How Can I Get Better?" but I had issues understanding even that. I am a bit clearer now, so I will try again.

I actually did know about the rage, I have had some of it myself, I just scream and yell at things around my house though. Anxiety is also thanks to bart and that was the very first thing I noticed in my son. He had bad separation anxiety, and a lot of fear. I just didn't know anything about it then. They say all that stuff is thanks to his autism, now I am not so sure... He has almost no fear now, it's like he completely flipped on that, not even healthy fear of injury. I worry about that.

I think I have to get him dxed with it so the home he is in will give him the meds for it. They are highly regulated and I think they need a script before they can give him anything, for example he has a script for vitamins. This is one of the issues I am facing. We only see him once a month, so I can't just treat him when he is here. Plus he is on a few meds already so I need to make sure nothing will clash with what he already has. I wish more than anything that I could just bring him home, but there is no way I can take care of him now, he needs to be watched constantly, and you have to make sure he does basic things like wash and brush his teeth, I mean you have to stand and watch him do it. I barely manage to take care of myself now.

I will absolutely look into the mold test. I looked into mold early on when I was dxed with fibro, it didn't fit at the time, but things have gotten worse since then.

My doc is giving me cholestyramine because he thinks I am not cleaning my own blood of the die off, it does make sense with my history, but I am keeping an open mind at this point.

Again thanks for taking the time to read all this and for your help.

Sorry to hear of your illness. My symptoms seemed to line up with bart the most but I never tested positive. I tried some burner herbs but they didn't help. The best thing I've found was monolaurin by Inspired nutrition.

I herxed for 2-3 months and then felt much better although I still feel a few symptoms. It's not too expensive and it's easy to start slowly because it comes in tiny pellets. I would start with 1 a day for a while and then ramp up. You can buy it on amazon.

It doesn't work for everyone but many people get relief from it. It made me feel worse for a while but it was worth it.