Bummed about LLMD appt

Sounds like your LLMD is really on the ball. It is great that she is treating for ehrlichia when your co-infection tests came in negative.

You need to address the ehrlichia before going after the Lyme. I do hope that you see improvement soon, the supplements should help.

I know it's hard at this point, but being positive about your treatment and prospects can really take you a long way.

Doxy is the "go-to" antibiotic for a few of the "extras" that come with lyme, ehrlichia being one of them. That may be why a lot of LL Docs start with doxy.
So, that seems like a good move....except the dose is usually 200 mg twice daily. 200 once daily may be okay for the ehrlichia...but for lyme you need double that.
You could always phone...and ask a quick question about the dosage.

Utahgal-Can you clarify what you are bummed about specifically?

Are you still not sure if you have lyme?
Did you not feel your llmd was helpful?

As for the dosage, my llmd has me on that same dosage and so far for me it is effective. I know there is controversy about doxy dosages for lyme. Some people say it has to be 400mg to be effective.
I think my llmd is pretty knowledgeable and he said- We find that the 200 mg a ay works even better than the 400 mg and has less side effects. I think they do this dosage deliberately, not indecently.

Are you bummed because you feel your treatment isn't working? Or because you are still not sure if it is lyme? What did your llmd say about it all? Do they think you have lyme, and do you think so?

Also, have you considered ( if you continue with this doctor practice) making your next appointment with the MD in the office? I imagine you could do that if you didn't feel you are getting enough help from the one you see.

I'm sorry you're not feeling confident about your treatment, utahgal. I'm only taking 200mg doxy as well and expressed my concern about the dose size to my LLMD. He feels it's sufficient.

While I know Dr. Burrascano recommends higher doses, I've read in many places that smaller doses for a longer duration can be just as effective.

I think we're all impatient to heal but it's become clear to me that treating Lyme is not like taking aspirin for a headache. It's a process.

In his book "The Lyme Disease Solution", Dr. Singleton mentions telling a patient with early Lyme that she should expect 3-6 months of treatment. Throw in cases of chronic Lyme and possibly co's and it makes sense that treatment will be longer. We all know that treatment for anything is individual-specific.

I did some research last night and doxy is the med of choice for ehrlichia.

For whatever it's worth, I'd be happy my labs didn't show more. More in this case means a bigger battle IMHO.

I understand your fears....having Lyme and being aware of people's extensive suffering makes things worse.

However, after my extensive research and recently watching the Norvect presentations by Drs. Horowitz and Burrascano, I have hope for healing.

You are in the case of an ILADS-trained LLMD....that's the best anyone can hope for.

If you do your part (appropriate diet, exercise, sleep, etc.), I think you have a good chance at healing.

I understand that you feel like you've been treading water. However, your LLMD is your flotation device and you will not sink.

Please keep the faith.

Thanks everyone. I have really been struggling lately. I appreciate your support.
Xxoo

The new ILADS guidelines state that it requires 400 mgs of Doxy - so if you are seeing an ILADS doctor, you can show them the hew 2014 guidelines. If they don't change your dosage, or offer a legitimate reason for keeping you on a lowered dose (introduction to abx needs to go slow, will be increasing dosage slowly, or will add in another abx at your next visit if you are doing well enough), then either get them to change you over to a different abx or switch doctors.

The science supports this stance - no matter what any doctor tells you. www.ilads.org/lyme/treatment-guideline.php

I am so sorry to hear you are so stressed with all of this, but rightly so. THis is frustrating, confusing, energy zapping, painful, and the list goes on.

With all of that said, one thing I try to remind myself, and it's not easy, is that
"Today I am closer to my health than I was yesterday."

And, so are you. It's so tough to deal with all of this, please be encouraged you can get through.

My suggestion, along with my present experience, is with the MTHFR supplements. Did you Dr explain that this supplement must be taken on a low dose, usually one per day, for a week. The next week, it's two per day, and the third week it's 3 per day. Continue adding one per week until you hit the dose Dr has you at. I hope they explained this to you. IF you take full dose at once to start, the detox issue will be 'opened' and you could get really nasty herxing. Please call you dr if this hasn't been addressed and make sure you take this properly. I do not want anyone to have to go through a severe overload detox herx. That would be pure hell.

I started my meds, low dose doxy for 2 months and then last month added to it low dose ceftin, and I also started taking my MTHFR (I tested positive for one of the gene issues). This past month has been hell! I haven't felt this bad in every way in a long time, and I had been feeling and doing great the past 3 months! I thought I was going nuts.

Yesterday I realized this is because I'm opening up my detox ability with taking the MTHFR supplements, and this is what herxing feels like!!!!! For me, having Lyme and Bart and Babs, the symptoms are both the Lyme physical as well as the Bart/Bab neuro physical/mental stuff. Until I figured this out, I though I was losing my mind.

Hang in there. Answers are there for YOU, and if you are taking the highest dose of the MTHFR supplements, I bet you'll start herxing. If you are to start low and slowly go higher every week, then the herxing might be better controlled. Just be aware, it took my body/mind about 3 wks of taking the supplements before I started to really see/feel something happening.

Good luck!

Wouldn't a 'like' or 'love' button be so cool on this site for the postings?

;)

great help, cd3764! I learned from you, too! LIKELIKELIKELIKELIKE LOL

I am so sorry you feel so bad.
I think they gave you 200 mg doxy because that is the am't they use in that practice.
I think it would be worth it for you to see the other doctor in the practice- I have seen them both ( the one you see and the main dr) and I think they are both good but the main doctor is better. I think it is the same cost, and he may answer your questions better. You can also do a phone consult with them ( expensive) to go over unanswered questions, and also send an email to the nurse who will get it to the doctor if you have one question.

Ummm...I screwed up when discussing my amox dosage. I'm not sure where it fits in the dosing range lol

The 2014 guidelines with the "2004" in the lower right hand corner list 3000-6000mg as the starting amox dose.

See #28 of page S9:

http://www.ilads.org/lyme/ILADS_Guidelines.pdf

#28 seems to be commentary.....while the other link I shared numbered the recommendations and used the term "recommendation" (also, the references to those numbered recommendations are highlighted on the ILADS site as corresponding to the new guidelines)

I am so confused as to which are the 2014 guidelines....

Can anyone help?

I was started on a low 100 mg doxy twice daily. This worked for me, as at that time I didn't know I was dealing with the MTHFR issue, so lower/slower for me was better.

Then, after 2 months, 250 mg ceftin twice daily was added to the same doxy as I was taking. Now, the Ceftin dose is also lower, 1/2 reg dose than usual. THis worked well for me to, to start, as I wasn't starting on the MTHFR supplements yet.

After a month getting my Methy-Guard MTHFR supplement upped to a closer 'normal' dose, my llmd has doubled my two abx, and is now adding an additional of cipro, and for me, that's to start working on the Bartenella issue.

Every person is unique, every dr is unique as well in treatment, etc., and boy, this is a challenging road for each of us.

We can not, we must not compare ourselves and our treatment against anyone else's treatment. We can only suggest, express our own experiences and pray the info helps others to ask the right questions, get the right care, etc. Keep on going......you are doing GREAT!!!!

The MTHFR supplement I take is from Thorne, and it's the Methyl-Guard. I am not a spokes person, nor have any personal gain from stating what I use for my MTHFR issue. This is a suggestion only. But, this is working for me.

BreakingFree makes some very valid points.

I was thinking about your situation, utahgal and remembered that you were also Rx'd flagyl.

It seems appropriate to start off with a lower dose of doxy in light of this.

I know my LLMD said it's important to not overburden the body. What good is a med if our bodies can't handle a higher dose? Things can always be changed.

The important thing is that we're getting treated....and I'm confident we will heal. That's why we're seeing LLMD's....they know what needs to happen to make that happen.