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Posted 7/9/2015 12:23 PM (GMT 0)
So today will be day 16 of my IV rocephin treatment and I am seeing good improvements. I dropped the herbal protocol for now, I think I was having some extra herxing with both that I was not enjoying so I cut back and finally came to believe I need to slow down.
So the Non LLMD STARTED NE WITH 1 month of doxy but stopped it when starting the Rocephin. So I have 14 days left and I won't be healed and I know the dr will think that I am. So that leaves me with where do I go from here.
I am in the process if getting a rife machine, I have spoke to two different homeopaths and want to see me after I finish the antibiotics. But the there is a gap of treatment.
I had the PA at neuro's office say she would refer me to a Infectious disease dr but looks like unless I submit to a lumbar puncture to see if it is in my CNS I'm not going to get a referral because the referral hasn't happened yet and that was 3 weeks ago or so when I saw her.
My mother said that I should see what the current dr says when finishing the IV antibiotics but her already said that the standard protocol is 30 days.
Some may believe I am getting the cart before the horse but I want a plan.
I know this is all such a personal decision I am looking for direction and encouragement.

Thank you,

Iheartx
Posted 7/9/2015 12:30 PM (GMT 0)
Oh and I do have an appt at the end of this month with the ILAD LLMD but all he does is long term antibiotics and I don't bieve that is the path I want to take but the antibiotics I am on are helping.
Urg!

Iheartx
Posted 7/9/2015 12:34 PM (GMT 0)
Okay, you snuck that second post in on me there. You are going to see an LLMD then, but you don't want to continue on the antibiotics, even though they've been seeming to help you.

I dunno. I mean, me, I'd use whatever showed me benefit. Though, I can understand not wanting to use them - they can be very damaging, if people aren't careful, or even when they are.

Maybe you could use them for a couple few months, to knock out a chunk of the infection(s), then try some herbals?

Hm.

Dunno. Hopefully someone else will have better ideas. I'm kind of poop.

Luck to you..

Post Edited (Antonio192X) : 7/9/2015 6:37:14 AM (GMT-6)

Posted 7/9/2015 12:49 PM (GMT 0)
Thank you Antonio! You hit on where and why I'm torn! The antibiotics are helping! The LLMD Is very expensive, $450 to see him 1st time, then $250 every time after that.
Doesn't take insurance.

I guess I need to call the Dr that is administering the IV stuff and see what his plan is, I haven't heard from him since he ordered the IV, so about 3 weeks.

Iheartx
Posted 7/9/2015 3:14 PM (GMT 0)
I would encourage you to find out what each doctors plan is as well - they may have some decent options for you and don't hesitate to talk about alternative treatments with them. Even if they don't believe that they work, at least you have given them a chance to help further. And if you agree to using the pharma abx for a bit it will give you time to figure out what alternative protocol(s) you wish to use.

Like Antonio said - since the abx have been helping, it might be good to stay on them for a few months while you figure out the rest of this.
Posted 7/10/2015 3:02 AM (GMT 0)
Thank you Traveler, you always have this way of being logical and reassuring! What a blessing! I woke up kinda down this morning, not enough sleep. My mother and son left this morning to drive to Michigan for a week. What a great adventure for them but nerve racking for me! They made it halfway there. :-)

Iheartx
Posted 7/10/2015 8:45 PM (GMT 0)

Iheartx said...
Thank you Traveler, you always have this way of being logical and reassuring! What a blessing! I woke up kinda down this morning, not enough sleep. My mother and son left this morning to drive to Michigan for a week. What a great adventure for them but nerve racking for me! They made it halfway there. :-)

Iheartx

Thank you Iheart. I'm glad that I can have that affect. I know what it's like living through some really bad spells with treatments, getting frustrated and wanting to just quit everything when it gets so messed up, waking up wondering if I can do this all again or not and so on - you know, the life of a Lyme patient!!! eyes I'm glad that I can continue to provide support here. and I have another advantage on top of that - I'm on the outside looking in on your issues, not trying to find the way out in a swirling mess of information and emotions!! Well, most of the time anyway!

I can imagine how nerve racking that must be for you. My kids never got too far from me when they still lived at home. I'm sure he'll be well watched over though. But, please remember that this does add stress to your already stressed out body!
Posted 7/10/2015 9:20 PM (GMT 0)
Thank you Happyjo and Trav!
I must like inflicting misery upon myself in hopes of recovery I know that's what it will take. I have been thinking on so much of my symptoms and so much of what I have read here. I know that I have Bart and from some symptoms and discussions with the weird rash I have on my legs that has gotten better but not gone I have Babs as well. I also know that you all have said that sometimes in treatment when one bacteria load is lowered another shows it's ugly face as the most predominant. So I did some rereading in Buhners book and website about treatment for Bart and Babs. I had bought the Bart tinctures in the very beginning and not taken it? Well Sida is the for both and I decided to give it a whirl....at a very low dose. I say very low but it's really a third of a full dose for a day. Low and behold I have brain fog, itching, aches in all my joints, now that I type this I feel flu'ish hot flashes, sweating and tremoring. Something is working enough to make me feel bad. I will keep this dose for awhile and keep detoxing. I despise Lyme and buddies!
I am trying to remain low stress and rest. My son and mom are almost there and he is so proud that he is actually using a road atlas instead of GPS on his phone. I do have an amazing mother to do all that she does.
One day I will be on your side looking in as well.

Thank you again,

Iheartx
Posted 7/10/2015 10:21 PM (GMT 0)
AHA!! Another part of the puzzle for you!!! That's great that you figured it out!! Of course, now you have to get through it! LOL! But at least you know. Slow and steady wins this race, but you already know that.

I think you are doing very well - you are continuing to educate yourself and are trying your best to stay on top of the detoxing, while looking for more answers - it's a full time job all by itself!!!

I have great confidence that you will be looking in at those who are sick from these infections one day as well - and helping where you can. :-) That's all it takes to change someone's life that day - and that is what makes me happy!!!

Each time I can help someone, it makes me feel like what I went through wasn't really just a waste of my life - at least I can help others with what I have learned. But because it took most of my life, I've got a ways to go yet to feel like I've made much of a difference....but I'll get there. And so will you!
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