is six months too long to wait for an llmd appt.?

Hi all,

I'm wondering something and would love your opinions. So many here know this lyme stuff so very much more than me.

Anyway, do you think that waiting 6-8 months to see a very good llmd is too long to wait.

(for anyone who's read any of my other posts, this will sound familiar and sorry to repeat myself.)
long story short (although that's hard for me, but I'll try) is that my son saw an llmd at the end of Dec. He has lyme and has been on amoxicillin for two weeks now. I'm grateful for the llmd, she's prescribe antibiotics until symptoms are gone, and she's ILADS trained, but she's very new to treating lyme, and there are a couple of other things that don't fit well with us.

I want a more experienced llmd for my son; husband insists on Dr. who takes insurance (I hate to say this, but my husband can be so stubborn and controlling. I'm trying my best to get this all worked out for our son's best).

Well, there's a dr. I've found, out of state (in CA where we used to live) who does take insurance, but we can't get there for an appt. until August or Sept. Then we'd stay for 6 months+ (we're self-employed and can take work with us) We could be flexible and maybe stay longer also. My husband LOVES CA and although this sounds extreme (to live elsewhere for awhile) he'd love it, as well as be happy we had a good doctor. And, me I'm just trying to find a way to get my son to an excellent doctor and I'll do anything.

Is that too long to wait? He's only had symptoms since Sept. 2013. (My theory though is that he got it from me, and that it's dormant in me, now THAT'S a long story, so I'll save it for another time. it's only a theory anyway.)

If we did see this llmd in August, I'd want him to keep taking antibiotics until symptoms are gone anyway until then. Oh my, this is complicated.

Bottom line is I want him in the hands of a very knowledgable llmd, and the one I'm thinking of has been treating lyme for I think 30 years, verses our current llmd who has been treating lyme for about 1-2 years.

Told you it's hard for me to keep posts short! Thank you for any ideas.

thanks for the ideas and book suggestions lymebabe.

I have Dr. McFadzean's book "The Lyme Diet", but not the other one. I'll look for that one and the Jernigan book too.

The doctor in California is a Dr. Y and it turns out that she is one of Dr. Macfadzean's mentors. (I only know this b/c Dr. McFadzean thanks Dr. Y in the intro of her Lyme Diet book, and calls her one of her mentors.)
This is what made me want to go to Dr. Y all the more.

But, I agree, I need to educate myself more and more, and see if there's a closer solution maybe.

I hear about experienced Dr.'s pulsing antibiotics and using more than one antibiotic and using herbs sometimes to support the whole person, but I think our llmd's plan is just to go with only amoxicillin until he's baseline. I don't enough to know if that's the best plan necessarily.

More research and reading needed on my part. It can be confusing, but
that's why I love any advice I find here.

Thanks again!

I agree, go somewhere as soon as possible. You can always keep the one in six months and go then to that dr if that's the one you really want for treatment.

Time is of the essence, and starting something sooner, in my opinion, is better than wating and letting things get worse without any treatment. Even if you research and start on some natural products. There's a lot out there and if you could get in to see a local lyme literate naturopath dr, that might be good to hold you over until the dr in six months. Often, they will see you in person for the first appt, then have consults over the phone.

I pray you find your direction and path soon. Hang in there and stay in touch with us here. Ask questions and try to stay strong.

Good for you Chapelle, and good luck! We can all use a success story! : )

Stacestar,
We have to do what we have to do. In order to keep peace in the family, why not? As long as your son stays in treatment and is keeping symptoms at least tolerable, why not wait and go to Calif? Don't forget that stress plays a large part in the whole disease process too, even for kids - and kids can tell when there's any stress between their parents.

Calif sounds like a good compromise from both sides actually. You might contact the Cal. LLMD and ask a few questions - you might be surprised to find out that the Cal LLMD will direct the new LLMD that you are using right now, and the worst they will do is tell you that they won't.

I got called first week of January telling me my first appointment with llmd is 7/9/14....7 months.

I should have added I have been sick at least eight years so probably chronic lyme. I also considered two other llmds and when I contacted them it was evenonger than 7 months at that time. I am hoping for a call that there was a cancellation but I suspect since it is all lyme patients I doubt there will be a lot of cancels since they are probably as urgent as I to see the llmd. My sit is different cause I am already probably chronic.

Post Edited (Roxie60) : 2/21/2014 8:32:14 PM (GMT-7)

I think so, that's going to be a long time of suffering with symptoms. I think you should be waiting a month at max.

Traveler,
thank you and don't be sorry! I think those are good ideas, definitely word of mouth, just even talking about it with others, the email idea too, all good.

Awareness. I think if we all keep talking to each other and with those who don't have a family member with lyme, people will be more aware of it.
I know now my sisters and my friends will be aware of what lyme symptoms are, and aware that it's not an uncommon problem (so to try to prevent with tick repellants, etc.)

And, now our pediatrician is aware it's not rare, and that the Infectious Disease Dr. told him we should treat even with just band 41 ++ and 39 IND. (Maybe that's not a typical ID doctor response, so I'm so grateful for it.)

But again, thank you for all your input, ideas and advice (and everyone else too.) I'm sure I'll be back sooner that later with more questions.

Oh, I agree, about not caring if the doctor is offended. To do what's right is what's important! Thanks!

Yeah, I can sometimes be like you and not want to make waves. That actually at times can create stress for me. Can you ask the doctor for Tinidazole to treat the cyst form? Otherwise I think with just one antibiotic it is creating more baby spirochetes in the long run. I believe Dr.Burrascano, Dr. McF and Dr. Y all treat the cyst form on an ongoing basis as in for the duration of the treatment. If your doc isn't open to that at this point, then anecdotally, people have said that grapefruit seed extract is effective at dealing with cysts. GSE comes in both tablets and drops. The drops are majorly sour so for a kid if they can swallow a tablet that is great...or crush the tablet and put it in applesauce or pb/j.

Here is a link to how Dr. Y treats babesia from her website.

http://dyfc.org/2013/04/babesia-treatment-suggestions/

I only link this page because she lists how she treats lyme in the protocol - by treating both l-form and cyst. You may have already seen this but if not it could be something for you to reference. Also, I think if your llmd is new to treating lyme, she may appreciate a reference from an experienced doc as well. Usually, I think they are open to learning but are cautious because they just don't want to make a mistake and cause harm to the patient. I gave one of my doc's Dr. McF's book while I was living in Australia because they were just learning how to treat lyme. She really appreciated it. I understand though, depending on the personality, they may actually be offended by such a gesture!

All the best to you and your family I love mom's who always do the best for their families. Your child is blessed to have you! He will never forget parents who were willing to move across the country to get him better. That is great example of a parent's love.

Post Edited (SLML) : 2/22/2014 6:36:09 PM (GMT-7)