lyme literate doctors?

[Anonymous]

Anonymous wrote:Any rheumatologist should suffice?

nope

[Anonymous]

Anonymous wrote:

Anonymous wrote:I don’t have any recommendations OP, but a functional doctor/psychiatrist changed my son’s life by figuring out mold exposure was causing his mental issues. We addressed that and his problems went away. I believe Lyme can be similar with similar result.

evidence? this sounds like pure woo.

you sound naive

[Anonymous]

Anonymous wrote:Just googled Dr Heffner. OP you need to take your child to see an actual psychiatrist and actual neurologist. In the interim, if you don’t have this already, support from a child psychologist.

and you need actual experience, not just a google search.

OP, I think there is a doctor listing on the ILADS website
https://www.ilads.org/

[Anonymous]

https://foxcareintegrativehealth.com/about-dr-fox/

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here.

Our child has been seen and diagnosed by a mainstream neurologist with PANS post covid infection. I believe there is more to the underlying cause. On standard Western Blot he tested positive for one band of lymes which is not enough to be considered positive. After reading, I think he has more going on. It might be Lyme, Mold or something else. He has had a ton of behavioral and physical ailments since 1/23. We are currently under care of a psychiatrist and a behaivoral therpist to work on the behaviors. I do not think this help will suffice unless we determine true underlying health issues.

you’re wasting your money and possibly going to harm your kid with uneccesary treatments.

and you have no idea what you are talking about

[Anonymous]

Anonymous wrote:I'm sorry your child is struggling so much but you aren't doing him any favors by doctor shopping for a stylish diagnosis. PANS and Lyme are likely not causes of your child's issues but some doctors will gladly take your business and tell you what you want to hear. It doesn't make it true, though. I'm sorry.

what do you mean a "stylish" diagnosis? PANS and Lyme are all too real.

[Anonymous]

Anonymous wrote:We have an appointment with Dr. Heffner but not for weeks. WE are in crisis now and i believe their is a root cause for my child's mental distress. Any other doctors either functional or lyme literate you recommend in the area? We already have a PANS diagnosis, but we need more help.

I sorry things are so bad. Lyme is awful. You said you are in crisis. What do you mean? I ask because you may need tyo treat crises ASAP even without a lyme expert. Lyme manifest in so many ways. Is the crisis physical pain? Sleep issues? if so, call the pediatrician to find out what can be done now. Is the crisis severe depression or extreme emotional lability? If so get guidance from your pediatrician and see if you need to go to the ER. You aren't going to suddenly get in with a lyme expert, but you can at least keep calling in case someone cancels. Also, keep collecting names so you can go for second and this opinions if needed. The crisis will likely need to be addressed now. You put out the fire and then you can determine cause and how to prevent future fires and how to handle if you start to see sparks.

[Anonymous]

Ignore the nay-sayers; I would’ve been one of them too until our household went through this ourselves, and our DC’s longstanding “mental” and physical health issues were resolved by antibiotics for a Bartonella infection discovered via Igenix testing and a course of antifungals to resolve colonization turned up by Great Plains testing.

I am a conventional medicine believer and like some PPs, was skeptical of the mold/Lyme/Bartonella/Babesia/PANS types of issues, until we went through it ourselves and spent several years trying to get answers via conventional medicine, which did jack-all. I now firmly believe that there is a subset of people who are vulnerable to systemic dysregulation caused by vectors like these; I hope that the research around long covid will shed some light, but that’s probably years off.

While I wouldn’t wish these experiences on anyone, I do think you have to have gone through it to really understand what it’s like, and how very little the typical PCP & referral-tour of specialities will do to remedy the situation. I’d be surprised if many people get to the point of looking for Lyme-literate doctors without having tried the regular pathways first without success.

ILADS, as PP said, should be a good source of knowledgeable providers. Good luck - I hope you find your path back to health!

[Anonymous]

Anonymous wrote:Ignore the nay-sayers; I would’ve been one of them too until our household went through this ourselves, and our DC’s longstanding “mental” and physical health issues were resolved by antibiotics for a Bartonella infection discovered via Igenix testing and a course of antifungals to resolve colonization turned up by Great Plains testing.

I am a conventional medicine believer and like some PPs, was skeptical of the mold/Lyme/Bartonella/Babesia/PANS types of issues, until we went through it ourselves and spent several years trying to get answers via conventional medicine, which did jack-all. I now firmly believe that there is a subset of people who are vulnerable to systemic dysregulation caused by vectors like these; I hope that the research around long covid will shed some light, but that’s probably years off.

While I wouldn’t wish these experiences on anyone, I do think you have to have gone through it to really understand what it’s like, and how very little the typical PCP & referral-tour of specialities will do to remedy the situation. I’d be surprised if many people get to the point of looking for Lyme-literate doctors without having tried the regular pathways first without success.

ILADS, as PP said, should be a good source of knowledgeable providers. Good luck - I hope you find your path back to health!

Igenix is a scam with a long history making fraudulent tests. Mycotoxin “panels” are likewise scams. Guys this is all fake.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don’t have any recommendations OP, but a functional doctor/psychiatrist changed my son’s life by figuring out mold exposure was causing his mental issues. We addressed that and his problems went away. I believe Lyme can be similar with similar result.

evidence? this sounds like pure woo.

I believe you, PP. For me, neurological lyme caused anxiety and depression as well as a slew of other issues. Luckily I worked with a great doctor and am feeling significantly better.

Check out Tavicare in Chevy Chase. She will help your child.

Did you have a known tick exposure and test positive per CDC guidelines? I sure hope the GYN who runs Tavicare is not purporting to treat children with serious neurological issues.

Yes and yes. Why are you so quick to criticize something you have not experienced?

[Anonymous]

I had a very severe Lyme infection (ended up hospitalized) and once I was accurately diagnosed there was pretty clear treatment from both infectious disease doctors I saw. I don’t have specific recommendations for a doctor but I would find a good infectious disease doctor and get tested.

[Anonymous]

It seems much more plausible that long covid could be the cause of your child's symptoms. I've definitely read articles about it triggering new mental health issues in kids and teens. It really might help to get your child involved in a pediatric long covid program at a reputable hospital or university. These functional Lyme doctors don't accept insurance for a reason. They have no evidence-based therapeutic benefit to what they prescribe and can't justify it to an insurance company.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don’t have any recommendations OP, but a functional doctor/psychiatrist changed my son’s life by figuring out mold exposure was causing his mental issues. We addressed that and his problems went away. I believe Lyme can be similar with similar result.

evidence? this sounds like pure woo.

I believe you, PP. For me, neurological lyme caused anxiety and depression as well as a slew of other issues. Luckily I worked with a great doctor and am feeling significantly better.

Check out Tavicare in Chevy Chase. She will help your child.

Did you have a known tick exposure and test positive per CDC guidelines? I sure hope the GYN who runs Tavicare is not purporting to treat children with serious neurological issues.

Yes and yes. Why are you so quick to criticize something you have not experienced?

Because a kid with actual Lyme will be treated by a mainstream infectious disease doctor not a quack.

[Anonymous]

Long COVID itself is a diagnosis that explains what you are describing.

I am so sorry. I know it’s very hard, and hard to accept.

[Anonymous]

Good luck OP. Mystery and/or hard to treat medical issues are so so tough.