2 weeks into rocephin - 2 steps back 2 1/2 forward

I just completed my fourteenth dose of rocephin. even though I did this a year ago I forgot how rough it can be. The first week was a breeze. The second week every symptom came back muscle twitching burning hypersensitivity to the point where I just couldn't take it anymore. It seems yesterday might have been the turn I was hoping for I woke up feeling just as crummy at the last few days, but by the evening most of the symptoms had subsided. Today as I got my second dressing change, I realize thatthe pain inthe soles of my feet had decreased and the burning wood now only in my feet not in my leg. Tags on my clothes aren'tbothering me as much today as they were the last few days.

while I am far from out of the woods, at least I am seeing some light now at the end of the tunnel. I saw my doctor on Wednesday and he agreed that even though I had great improvement last year with the rocephinI still experienced treatment failure. So he has decided that this time I should do 8 weeks instead of 4. I am very happy about that.

I have been supplementing the Rocephin with metronidazole that I have left over from previous months of treatment. I just hope my liver is fine.

I hope things keep getting better. Please post updates!

Daxwell—
Keep at it! You might want to add milk thistle seed and burdock root tinctures to support your liver—they have been very helpful for me.

I'm on my 4th wk of 1g Rocephin and boy, it has been rough. I stopped taking the Byron White formulas for lyme, bart and babs while we started the IV treatment so that any reactions would be clearer but doc wants me to start taking them again and thinks they will lessen the intensity of the sx.

My physical sx haven't changed that much (hip jt and knee pain and muscle aches are what plagues me most along with sight and sound oversensitivity). It's the neuropsycho sx that are knocking the life out of me. I have never felt so crazy and out of control.

But… those are signs that the meds are crossing the blood/brain barrier and getting at those !#^$^#@$@ critters in my brain.

I STRONGLY recommend taking low dose naltrexone (LDN) for your neuropathy. I, too, had stabbing migrating pain and shuddering or trembling, uncontrollable jerking motions and a lot of difficulty sleeping with all the pain and activity and I have almost none of those issues now. I've been on LDN since I started treatment in Feb.
- In high doses it's given to people trying to come off opiates safely but they found that at very low doses, it helps those MS-type neuro sx.
- It takes awhile to get used to. You'll likely start at 1g and it may take a few weeks for your body to adjust to it and then you might work up to 4g or so… people have different "sweet spots".
- Let me know if you would like more info on it.

Forge ahead!

-p

Yes, our poor nerves! But as long as they heal I will put up with all of it.

I am 15-20 years chronic late stage and have at least 2 other co-infections, likely more. I struggled for a very long time with yeast/fungal issues and a high viral load… It's taken while to get my immune system functioning again. I wanted—and LLMD encouraged me—to start slowly. She will likely increase it to 2g in a couple weeks and to 3g a month after that. Then she'll add in malarone or mepron for babesia. Not sure what happens after that for the bart.

She has suggested that I will likely be in treatment 18 months —probably not on abx that whole time (I HOPE NOT) but I got a long road ahead of me.

I'm glad you are making progress—please let us know how things are going and continue posting!

-p

I am following you both closely (Dax and P). I just have a funny feeling that I will need a PICC to beat this thing. I really hope and pray that you both find some improvement soon! And....No herxing allowed for Christmas/holidays!

Thank you both for posting updates. It helps relieve some of my anxiety, especially when you do have good news to report.

Xoxoxo

Thanks for that info - very interesting. I have read that a lot of LLMDs like to treat Bart first because it is so tough. I have to admit that when I first started treatment, I was SO OVERWHELMED and so sick and was just barely "in the room." I'm on my own so I didn't question too much.

As I've started to improve (in some ways, not others) I am able to do more research and be more proactive and I feel like I'm slowly getting a handle on the treatment. But I think your post is reminding me that it might be good to have this discussion about bart with my LLMD again.

I think I was also all "tested" out after spending $2k or so just getting started. We provoked for my IGeneX WB and got a CDC-positive result. But while the Fry Labs test was positive for Bart, LLMD didn't think it was positive enough for insurance to cover anything and at the time I was having some success w/ Byron White formulas.

Babs microti and duncani both came up negative, but babs sx are my most prominent (although that may have changed recently since starting the Rocephin). So, LLMD decided to start treating whatever was the least path of resistance (w/ insurance co.) If I had a sound mind and a little more strength and cognitive engagement at the time, I may have challenged that! I had quite a few other roadblocks just to get to this point to start w/ the abx (I first made an appt w/ LLMD Aug of 2013, and didn't start herbs until May 2014 and finally started abx Nov 2014. It's been an arduous start.

Anyway, I am very much interested in your journey with the Rocephin since I think our treatment is in parallel as far as timing goes. Did you discover your infection recently? SORRY—just saw your salutation. You were tested awhile back. What prompted you to start treatment again? I think I was confused by that.

-p

Utahgal—

I know how you are feeling—I had such a complicated start to my treatment (at the time, now, looking back my LLMD was kind of brilliant in dragging it out like she did to knock out other complications). But I was very very very worried about going on abx. I'm the type of person who refuses to take aspirin. ;) But I am relieved to not have to take abx orally with my GI disaster. And I hope you don't need a PICC. I think people have success with it. If you think you might have to go the IV route I'd opt for a port, not a PICC unless it's a short treatment (2 mos. or less). BUT… let's hope an herbal approach is your sweet spot. ;)

cccMama—
Thanks so much for including your progress in the discussion! That is awesome to hear. I needed some good news today. Based on what I've read and what my LLMD has told me, I think your LLMD is on the right track to see at least a month sx-free before taking you off. Will you switch to herbs? What is next, then? I think the duration of tx is very dependent on each individual case. 10 yrs is a long time, but you might be more receptive to the treatment (for various reasons—better functioning immune system, better detoxing) than someone else who hasn't been sick as long so your treatment might not last as long.

It would be so helpful to be able to plan things out a little better, wouldn't it? Hang in there and keep posting about your progress!

-p

Tickbite

Which neuro symptoms do you still have that the rocephin didn't help?

Utah,

Rosephin did little to help with fatigue, peripheral neuropathy, head pressure, sleep disturbances, and brain fog. After getting the PICC line out we played rotated thru some Babs combos, a couple rounds of coartem. and introducing some of Buhner's herbs with little success. I even took a couple of passes at parasites. with Parastroy. Then in Nov 2013 we took one more stab at Bart, and that got me over the hump to 80% like I've posted in the past.

Just goes to show you how much sx overlap there really is. And the need to change directions when progress has plateaued.

Daxwell—
I am so sorry you are having a rough time—yes, let's hope its a herx. Many people have suggested that week 3 is a tough one. It seems for me, every week of the 4 wks I've had my port in has been one strange thing after another.

Before I started my lyme tx, I spoke w/ my LLMD about treating more than one confection at a time. She felt that I would need to start slowly and then yes, we can add in another treatment but no more than 2 co-infections at a time. At the time, my most prominent sx were Babesia but I had a CDC positive WB for the lyme. So we targeted to treat those two first—although I know some LLMDs prefer to treat Bart first.

Please continue to let us know how things are going.

-p