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Saw Dr. B today, the next road....Lyme...


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The drive wasn't too bad, the wait was awful, 2+ hours. not good for a hyper 9 year old boy who is afraid of blood work. But we made it. Then 3 hours home. Anyway, so we are at a fork in the road again. The IVIGs did nothing, yeast treatment did nothing. Antibiotics do a little, and the prozac helps the OCD, yet causes ADHD symptoms. So we were stumped. Today Dr. B looks at Ian's Igenex tests from 1 1/2 years ago, and says, "Yes, they are negative according to the CDC, but to me these would say positive." Huh? Well, I hemmed and hawed for the last year to make an appointment with the LLMD, Dr. B said he couldn't say I should since Ian was negative. But then today he says, yes, I would say this could mean something. I like Dr. B a lot. Even though we wait so long there for our appointment. I know it is because he is so busy and trying to help so many. I just wish he would have said that when the test results first came back. I should have made the appointment myself anyway, but I didn't. So now I feel it is the necessary next step. WE just found out DH is going to lose his job. We don't know exactly when yet, they are not laying off exactly, so he is not sure about severance, etc. Or if he will even get any. Unemployment will barely cover our mortgage. I own my own business but it has really covered the extras like all the medical treatment, travel expenses, etc. plus hockey fees, vacations, Christmas, etc. Now it will have to go to pay the important bills. So I have no idea about health insurance (not that LLMDs take it anyway) but I sure know I can't afford these huge fees they charge at the first appointment and for tests, etc. So on one hand I am a bit irritated he didn't say something earlier, when money wasn't an issue. But on the other hand I am hopeful. Maybe this can help Ian finally. The antibiotics still keep the tics away. So something is going on. Other co-infections aren't an issue according to blood tests. So this seems the logical path. I am going to have to wait a bit to see if we find out job info before I can make the appointment. Uggh. It is never easy and we can never get a break.

 

Does anyone know about how long it is to get an appointment with Dr. Jones? And could anyone tell me what to expect with the first appointment? I can't fund tons of supplements right now, to be honest with the unknown....Does he require more tests that are out of pocket? Or will he go on the Igenex so we don't have to do that again? Thanks!

 

Lisa

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Lisa, first I'm sorry to hear that you are going through this. I would advise you to make the appointment with Dr. Jones tomorrow. I would be surprised if you get an appointment earlier then March. Our appointment with him is in February, and we scheduled it in September. His first appointment, I believe is $900. According to the nurse, he spends a good two hours with the family and they advise writing down all your questions for him. I know others on this board have been to see him so hopefully they will chime in. I'm not sure where you live but another option for you might be the Jemsek clinic in DC. You can get in sooner there, but there are other trade offs. best of luck! The uncertainly of Lyme is a pain in the butt.

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When we called Dr J 2 yrs ago, we were given an appt 3 months out. But two weeks later, they called and offered us an appt. two days from the day they were calling. We couldn't make it and ended up with a different LLMD. But with most LLMDs, if you can go at the drop of a hat, you might get in pretty quickly. While LLMDs don't accept insurance, they usually give you the insurance claim form you need to submit your own claim. Once we hit our deductible, our LLMD appts get reimbursed at 60% (because he's considered out of network). When you make an appt, ask to be put on a cancellation list and they'll call you if time slots open up before your scheduled appt.

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Wow, I didn't realize he was that much. There is a local one I have thought about calling that is less and I have heard good things about. I hate to make it seem about money, but with job uncertainties right now, I just can't take that kind of funding out of pocket until we know more. I guess I can make the appointment and then cancel if I have to. If he is booking out until March, maybe I can figure something out by then or we will know more job wise. I hate thinking I am making my son wait for something that could help him, but basic necessities have to come first at this point until the job issue is settled. I feel like I try and try to help him, yet I keep getting backed into a corner.

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At least making the appointment won't cost you anything and then it buys you some time to see what happens on the job front. They don't ask for a deposit the way our first LLMD did. (That should have been the first sign for us but that's another story...) I think we all understand what it's like with the money situation so don't beat yourself up over it! You're doing the right thing-

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Just PM'd you with a more local referral. I believe you are in MA area...

 

I love Dr. B. and credit him (and LLM) with saving my dd's life. But I really don't think he's a Lyme expert (yet). I do think he's learning more and more though. Our dd's first Lyme (almost 3 years ago) test was negative, but showed a specific Borrelia band, which, Dr J., when I showed it to him a couple of years later, said indicated my dd had been exposed.

 

So perhaps Dr. B. has learned more about the testing since your child's first round of tests....

 

The good thing is he at least knows now to test for it and co-infections, then to refer out if necessary.

 

Kara

 

(Just had to edit the post to include LLM ;):wub:)

Edited by KaraM
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THanks, everyone. Thanks Kara, I got your PMs and will be in touch! I think he is learning and I totally love him. My frustration isn't with him at all, just wishing I knew more earlier. I think we all have that frustration at one time or another. He is helping us figure out this puzzle. Looks like it just time to find the next piece.....

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