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Feeling very conflicted about my tx plan

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Posted 3/5/2014 6:19 PM (GMT -5)
I don't know if I dare to do the picc line abx.... I feel so ill already I'm so afraid my body won't be able to handle it. Talk to me :...(
Posted 3/5/2014 6:58 PM (GMT -5)
I was only on oral but I know that had it not been for that I would have been in a wheelchair. Would a midline make you feel better?
Posted 3/5/2014 7:08 PM (GMT -5)
Is it the picc line you're worried about, or antibiotics in general? It IS scary to take that first step in treatment. But as so many here reminded me when I was afraid to take that first Biaxin pill--you're not gonna get better until you start to attack the bugs!
Posted 3/5/2014 7:16 PM (GMT -5)
I was on 3000mg a day of amoxicillin on and off for a year. I'm scared of herxing too hard with IV abx. I asked if I could ease into with a few different oral abx but my doc said not the best idea bc the bugs are too smart and he wants to hit them hard.im just scared of what hitting the bugs hard will do to me because I've been sick so so long.
Posted 3/5/2014 7:34 PM (GMT -5)
hmm I can see why you are scared. What did he say about herxing? Was he concerned? I used to get an IV glutathione push if there is an alternative dr near you you may be able to get that on the day of your IV. Glutathione is an excellent detoxifier. I don't know if you can do it with an IV abx but I cannot imagine why not.
Posted 3/5/2014 7:54 PM (GMT -5)
He didn't really say.... I couldn't think of questions at the time.
Posted 3/5/2014 8:03 PM (GMT -5)
Can you ask if you can do oral instead ? I am chronic and late stage and the orals seem to be working.
I think you need to feel comfortable with it. And second opinions do not hurt either.
Posted 3/5/2014 8:58 PM (GMT -5)
How long have you been on antibiotics?
Posted 3/5/2014 11:42 PM (GMT -5)
Did your doctor mention MTHFR?
Posted 3/6/2014 12:00 AM (GMT -5)
I'm being tested :) thanks for asking
Posted 3/6/2014 12:03 AM (GMT -5)
I'm sorry.

Have you talked to other people who do the picc iv? Maybe it would help.

So . . . anyone out there on a picc line? Maine needs some encouragement.

A friend of mine does Rocephin injections. Is it possible you could start with injections?

Make sure you have some Burbur on hand. I just bought a bag of lemons :)

I know it's hard. I'm herxing today bc I did something last night called hyperthermia, and I overdid. My LLMD is trying to come up with all kinds of non-antibiotic suggestions, bc of the c. diff.

At least you can do abx!! Think of it as a privilege.

Some people get way better on iv abx. The writer Amy Tan did a lot better. Just imagine if you all of a sudden had more energy!

I got a little taste of feeling better while I was titrating up on Cowden.

IV abx have the highest success rate of any treatment for Lyme.

Talk to your LLMD!!!

Go girl!

smilewinkgrin

Margaret
Posted 3/6/2014 12:49 AM (GMT -5)
I've been on oral abx for the last 5 months and the herxing has been horrible headaches, dizzy like I've been hit by a "big" truck. I started IV abx last week and the herx has been much easier like a "small" truck. Other than having to go into the doctors office 3x/wk, I'd prefer IV any day. (At least that's how I feel today:)
Posted 3/6/2014 1:47 AM (GMT -5)
Thank you Margaret and picture of health!

Picture do mind if I ask how long you have had lyme and how old you are? Did you ever have cardiac issue, or severe widespread muscle, bone and joint pain.

I was on 3000mg of amoxicillin off and on for a year. I was infected as a child and I'm 37 now. I was only dx last march. I have many neuro issues.

I am supposed to start that Byron White AL complex leading up to the picc. I was supposed to start today and chickened out. My LLND said stop the amoxicillin and that it's useless. I believe I will be on Zithromax and a second gen cephalosporin IV. He doesn't like flouroquinolones. I will have my line placed in New Hampshire and come hike to maine with it. I'm just scared of the herxing. Lately I can't tell if I'm herxing or getting sicker.
Posted 3/6/2014 3:50 AM (GMT -5)
I Had the bulls-eye rash 3 years ago. I thought it was a spider bite but did take a picture of it. After the horrible flu I had strange symptoms come and go. Muscle spasms, joint pain, dropping things. By last summer I my hands and feet were going numb and zingers up my neck. Then came the anxiety, heart palp's and crazy thinking. My sister read an article about someone with Lyme that had these symptoms...I brought my bulls-eye picture to my doc and got tested in Oct. After 1 month on Doxy I found a LLND who has pulsed me with Mino, Cefdinir, azithromycin, Artemisinin,
Hydroxychloroquine, and Mepron.

My cardiac symptoms got really bad with chest pain, high heart rate, high BP. I saw a LL cardiologist who diagnosed me with POTS due to lyme. The same week my MTHFR results came back C677T 1 copy, A1298c 1 copy, so I'm not detoxing very well.

When the heart issues and air hunger got bad, so quickly I felt I had to attack the babs, bart and Lyme with IV's. I wish there was an easier softer way to get through this but I'm guessing not. Everyones journey is different, may we all heal!
Posted 3/6/2014 9:54 AM (GMT -5)
I had a lot of those symptoms amongst others most of those and they gave me Xanax. I have a little anger....
Posted 3/6/2014 11:23 AM (GMT -5)
He's right about the amox. I'm glad you are being tested for mthfr.

I'm also compound heterozygous for mthfr. B vitamins have been a miracle for me.
Posted 3/6/2014 12:33 PM (GMT -5)
Mthfr always makes me think of swears.
Posted 3/6/2014 2:24 PM (GMT -5)
Hi Maine,

It's scary to start new medication... I had moments that I was so scared that I waited a few weeks before starting new medication. I always told my dr though, just to be sure.

My dr often gives IV abx to patients that have a very bad digestive system. I had to stop abx end of last year, herxed non stop for 15 months on them. I had this bacterial infection that started 2/3 weeks ago, and went on IV abx (Amox.) for 6 days to fight it. I was really scared for the herxing. But it was ok, better than on oral abx (no digestive distress on top of the herxing).

LOLLL - I always say the curse instead of 'MTHFR' mutation. turn
Posted 3/6/2014 6:02 PM (GMT -5)
Thank you marie for sharing and encouraging. :)
Posted 3/6/2014 6:20 PM (GMT -5)
Pathogenkiller I also have compound MTHFR. It is so encouraging to hear you are doing well on the B vitamin! I am not on any medication yet, I have my appt in April. What exactly are you taking or are you doing shots? Have you always had problems related to MTHFR? I think I have had problems ever since I was little. I simply never felt well, always exhausted, felt like my potential was disproportionate to my actual performance to the point that I was borrowing books on executive functioning. And now all this which actually saved my life now that I am looking at my blood results and it has high deep vein thrombosis risk all over it!
Posted 3/6/2014 7:42 PM (GMT -5)
Lymebabe, I take L-MTHF (bioavailable folate) and methyl b-12. I felt crappy for the first 4-6 weeks but could tell I was detoxing as I started sweating for the first time every and I REEKED. I also take sodium butyrate for the ammonia issues that come with lyme and Co. Those things significantly helped the brainfog.
Posted 3/6/2014 8:50 PM (GMT -5)
Oh, so that's what that foul BO I sometimes get is! It's in my sweat, urine, and BMs. Even my bed sometimes smells like it.

I'm still taking Zeolite, so I hope that will help.

I've been taking L-methylfolate for a long time, so it must be from something else.

Margaret
Posted 3/6/2014 9:07 PM (GMT -5)
are you taking b12?
Posted 3/6/2014 10:04 PM (GMT -5)
How much of each? I heard you have to take both. Right now the easiest thing was to get on a B complex that has both of those in it 500mg each. But I heard people taking up to 4,000 mg. Then I also heard that B12 does not do anything taken orally that it must be taken as an injection. So I am left wondering.
Posted 3/6/2014 10:53 PM (GMT -5)
Lymebabe,
My doctor told me to start with 5000 iui sublingual methylcobalamin and 1000 mcg of lmthf, then work up adding 1000 mcg a week till I maxed out at 5000 mcg. I stayed on that dose for a bit till I began to feel over methylated and went down to a 5000 iui methyl b12 and 1000-2000mcg lmthf.
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