My son's NEW LLMD appointment in D.C.

Hi Huddie!

I'm so sorry for your struggles but so happy with the progress for your son. You are in my thoughts and prayers 😊. Hugs

Actually, Huddie, you've been under significant stress lately - if I may say so, as we have been emailing with each other.

And a 5 hour appt is beyond wearing!!! Do not discount that! I've actually been concerned about the stress you are under, but understand that there are times when we have to just do what we have to for our kids. You should rest and recover from these appts and the traveling it involved.

I won't comment on the abx choices because I simply don't know enough, but I am curious about your thoughts on them and what the new docs have to say? You have pretty good intuition on what's right for you and your son.

As you make your decisions about your son's treatment, you simply can not put aside the stress that it may bring to you, so consider carefully. Stress is a major issue when we are dealing with chronic anything.

Stress will bring me down in a heartbeat! I have to prepare for any stressful event, even if it's just a two hour drive to go see our kids! This is hardest on Mom's with sick kids, especially when the kids are sick too. It just adds too much stress, so do be careful to find ways to de-stress - this will be important for your own healing.

I know how much your worry about Will, and I don't blame you a bit, but do NOT forget about your own needs - they are really important right now too. If you are too sick to get out of bed, you won't be of much help with Will (sorry!), as he will then stress out worrying over you - if I understand your family dynamics right. So, you will need to find balance between his needs and yours. Not easy, and I used to always get flipped around when my kids were at home, so I get it, but we are talking about your health too.

Hang in there, take time to digest the appts, digest what others say about them, and then choose what you feel would be the best path for each of you.

And come here to vent!!!!
((((((((((((((HUGS!!))))))))))))))

Huddie, glad you are here, and I hope being with us helps.


Traveler, I discussed just now, with Huddie what has helped me with dealing with stress. And I need to take some right now!
Before this is over I will need tranquilizers.

I told her Sage woman carries the Avena Sativa.

One of my children recently relapsed after several years in remission and we are seeing a new llmd as his last one has stopped practicing. It definitely takes a few days to process the new approach and appointment procedures. You definitely need to trust the practitioner and the process; not easy to do when you know so much from your own experiences. I know unequivocally that my son will be a stronger and more evolved person from dealing with this and thats what I ride on. Can't really wrap my head around the rest of it...

Sounds like we have very similar upper back, shoulder, and neck issues happening; not fun. I have an arnica and peppermint oil blended gel I have been using along with frankincense oil and it provides some relief.

Feel better and keep us posted.

Huddie good to hear from you, but sorry that you are so stressed. It is incredibly hard to trust others especially when we do so much research and have seen so many different doctors and have gotten different perspectives from each one. So I agree with the others, you have to decide if you're going to trust the protocol that has been given. But I agree, it is hard. But here is the other thing, you've got great instincts. And our bodies are smart and give us clues as to what may be working and what's not working.

I'm seeing someone new myself as of today, and what he told me is that I've got to decide if I'm going to trust him and the current protocol. He told me that he understands how hard that is especially when you are used to doing the research and making all the decisions.

So I get it totally and completely. Please take care of you for your son's sake and for your health.

Yes, Dr J has a good rep, & hopefully you can do some consults by phone? It really is a crazy roller coaster. Anyway, just quick (((hugs))) & best to you & family!!

Hi,

I sent you an email on costs but suffice it to say subsequent visits (except the second one) should be 1/3 the initial cost and visits are 3-4 months apart. For DS they were 3 months apart the first year and now 4 months apart - so 3 per year? The cost of the second appt is about half or less than that first one. Then the price drops to 1/3 the initial appt cost, and for adults (you'd need to ask about kids), they may allow Skype calls - at least that's what I've read online but that also be for the numerous international patients.

Our NP always runs stuff by Dr. J so you are getting the benefit of his input even if you aren't seeing him, at least every time we've been there.

Also there is an online portal and for a small fee you can ask questions but with DS I usually just call and they have a system where someone calls back and takes detailed notes, gives them to your provider, who decides on any changes and the same nurse calls back and gives you the update. An example of how we have used it is to call in if a new protocol is making him miss too much school - or have some worsening symptoms - they want patients to have some relief from their worst symptoms and work to modify the protocol is it's really awful. Unfortunately with tick infections, there seems to be undoubtedly a lot of suffering in the initial treatment, regardless of whether it's herbal or pharma!

Hope this helps others looking for cost info.

Hi there,

I myself have been pretty absent from the site partly because I've been feeling better and I've seen improvement with the kids, which is great. I feel almost as soon as I posted a good update here, I jinxed myself and have a bit of a setback and even some of the kids too. But I guess it's to be expected.

Anyhow, as you know, I have gone to Jemsek myself and I even got my husband there as well. My kids went to Jones. Two totally different approaches and philosphies but both super expensive and hands off.

Normally, I don't love to see NP or PAs and would prefer an MD or a DO, but for some reason I didn't mind as much with Jemsek. I think part of it is that I feel my case was caught quickly and is relatively mild in terms of the chronic lyme world. Part of me would feel almost foolish insisting that my case requires some special thought by Jemsek, however, I don't think I'd feel that way if it were my child who was not diagnosed quickly. I will say that I preferred my NP/PA or my husband's. My husband's PA/NP really seemed to be reading from a script but I think maybe it was a personal chemistry thing because I've corresponded with others on here who really like her. One thing that did unnerve me is that my husband and I have the exact same protocol so it does feel like it's a bit of a formulaic approach to treatment lyme. Like a lyme treatment factory. That being said, they are cutting edge and I'm sure they would adjust their protocol if they happened upon something else that worked better. Yes, it's expensive to be sent on your way for months without a word and protocol of medicine, but I know they have succeeded in far more complex cases than mine.

One thing that I liked about my NP/PA is that she voluntarily gave me the option to do my follow-up by phone which was great. My husband's NP/PA wanted him to come back in but would accept phone if it wasn't possible. They want to see your son since he's a bit trickier and he's a child, but my next appointment in 3 months will be in person.

Now, my kids went to Dr. Jones and it was him and only him. He did a super thorough exam and I do feel like he also has a formula for treatment but he definitely felt more individualized. Dr. Jones is actually more expensive than Jemsek and while he did a phone follow-up, he wants to see them again a few months. Another thing is that Dr. Jones is quite old and I hate to say it, but I'm nervous he could get sick and die and my kids will be back at square 1.

The truth is that I called around to a few LLMD experts. There's a lady in PA who treats both kids and adults and her waiting list for new patients was 1.5 year away. I also called a so-called bartonella expert and he was making appointments for February 2018 back in December. If the doctor really saw everyone, then that's the kind of wait time you'd have which is not good.

I feel this way you are getting the benefit of the experts' experience but not the wait time that the individual attention would require.

I know it's expensive but I'd rather throw $1k at an expert who might actually kick this thing than waste $350 every month or so on someone who is just following the experts' lead and guessing the dark.

I'm not sure that any of this is really working but I've found for me the psychological benefit of feeling like I'm being uber aggressive calms my anxiety and allows me to live my life without going into a complete downward spiral of anxiety.