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I’m having a hard time getting an appt with an AP doctor in my state. Looking to travel to Southern Calif. Anyone here being treated by Dr. F?
I am currently a patient and have seen Dr. F for a little less than a year. It is well worth the trip. Dr. F was the only one that was able to diagnose and treat me properly. The in house laboratories are excellent as well. If you have the means and can travel, I highly recommend it.
I am also a patient of Dr.F. I traveled all the way from Toronto, Canada to see him! He also was the only one to diagnose me properly and provide the right treatment. I’ll probably be going back to see him some time in the future again!
Hi Martina,
We think Dr. F. is on medical leave right now. Unfortunately no other updates to share but we will listen out for any further patient feedback that comes in to share here in this regard.
Oh gosh, I’d love to get my son into see him. I talked with them yesterday day and it would be $5,000-$7,000 out of pocked since our insurance is HMO. My son is so sick with horrible cough for a week. Getting him to get a PFT and CXR. The other thing Sylvia mentioned is that he doesn’t usually take patients under 15. He might make an exception. Are there any other AP docs anywhere that are open to AP with younger patients. You could PM if that is preferable. Thank you Peachy, Maz, Monmar and Cary for your responses!
That’s great news, Peachy! Thanks for checking and feedback. Feedback is the only way to keep the doc lists updated.
I’m in Utah Maz. I’ve talked with a couple of receptionists (referred by RBF for possible AP). They seem possibly open. It sounds like I’d have to jump through their hoops with other possible protocols first/too and pay out of pocket. I don’t know if I have it in me to be honest to try and convince yet again, more doctors this time for my son. They are not as open with younger people. I’m sure liability is a bigger concern with kids…
On the other hand, the Cal doctor is very expensive! Of course, I’d spare no expense for my son even if I need to sell my house. His PFT showed inflammation in his lungs. Mild obstruction. Probably not allergy induced as his pre and post bronchodilator were the same, no improvement. His DlCO is still really good. But this dry hacking has me completely overwhelmed. I don’t mind experimenting on myself but I’m paralyzed with fear trying to figure out how to help my son. My husband is supportive but he doesn’t understand my panic.Any other docs familiar with peds in another state that will be easy to work with?
Thank you!
I know of a Doctor that treats kids in this age group. He has not been nearly as expensive as the Doctor you mentioned in California. Since we just started with him and are new to AP I can’t say whether or not he is very experienced but at least he is willing to give AP a try with tweens and teens. I’ll private message you his details.
Here are the things I would consider as far as expense:
You would be seeing a local doctor much more often and those visits add up. I definitely know that because my daughter was so young that we always did both.
What drugs did the ped rheum who diagnosed your son recommend? How do those costs compare? In our case, the last azithromycin refill was $4.72. Does anyone know what Enbrel is going for these days?
Tax laws are always changing, but we kept good records and got a lot back as unreimbursed medical expenses.
As far as feeling like your are experimenting on your son, please consider that he has a rare condition so anything you use is pretty much like an experiment. We felt much safer using drugs that have been around for decades. The side effects are well-documented. You can be very prepared for what to look for. You are also in the position to have your own history to go by, and I think that will play a role with how any doctor you choose to see will treat your son.
The thing I would consider about an inexperienced AP dr is not that they would provide lesser care, but that they would get scared and dump you. Dr. F is established and the steps he has you follow are to protect everyone. It comes at a price, but he isn’t going anywhere.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Thank you Suzanne for your reply. You’ve been at this for awhile and I appreciate your wisdom. I’ve seen some variation on dosages and combos of AP. With Dr. T years ago, I started with 200mg BID of Minocin. I think that’s what he put everyone on in order to hit it hard right away. After a year, I did have a period of terrible vertigo to the point of throwing up. I guess that’s where an experienced doctor helps.
could someone PM me to tell me this doctors name? might make an appointment
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin
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