posted
I have some questions about IV treatment....
I have been treating--with oral antibiotics, which have consisted of two antibiotics and pulsing tindamax or flagyl-- since February.
My main symptom is, and has always been, fatigue. But I've also had some minor symptoms(muscle twitching, hot flashes, night sweats).
My minor symptoms seem to have gotten somewhat better, but I dont' feel like the fatigue has improved.
I have never really felt like I've 'herxed' and at my last appointment w my LLND, she prescribed liquid oral antibiotics because she was wondering if I was absorbing them very well.
Would IV antibiotics be a good option? I have the option of treating with IV antibiotics with ceftriaxone 2g for 20 days....
What are the risks of IV treatment? Is it more effective than oral antibiotics?
I would really like to get over this disease(I know we all would!) so that I can get back to my college life and competitive swimming.
Does IV treatment speed up the treatment process?
Any & all information would be greatly appreciated.
Thanks!!
-------------------- College Student Suspected tick bite: 07/2007 Diagnosed and started treatment: 01/10 Posts: 33 | From Ohio | Registered: Nov 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Which 2 abx are you on?
It could be symptoms of Babesia which would require antimalarials.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
I'm on amoxicillan and azithromycin 600 mg, pulsing tindamax 250
mg, and I'm also taking artemisinin ( I think this is an antimalarial).
-------------------- College Student Suspected tick bite: 07/2007 Diagnosed and started treatment: 01/10 Posts: 33 | From Ohio | Registered: Nov 2009
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posted
That is a very low dose of tindamax FYI. I have heard the fatigue is one of the last symptoms to go...Dr B suggest NT factor for that I believe. Have you read his guidelines?
The standard dose of flagyl is between 500-1500mg and tindamax is usually given at the same dosing I believe. I started at 500mg tindamax daily, and now pulse at a higher dosage.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
One more thing, Dr B states the IV is more effective...especially for neuro/cardiac symptoms. Honestly, rocephin is a a great med, but why only 20 days worth? I got my PICC line placed 4 months into my disease and am still on IV treatment...getting better, but still have 6-8 weeks left of IV before I can switch to orals.
What supplements are you on? PM me if you need Dr B's guidelines and you can learn more about the supplements he recommends and the NT factor.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
I just did 3 months with IV and it didn't help me at all. Fatigue is my worst symptom. I had Ehrlichia, but we didn't think I had babs/bart because I don't have many other symptoms, but now we are going to treat for that.
I hope this is what helps me, because if not, I may just give up. I am not one minute better from nearly 2 years of treatment.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
How exactly does IV treatment work? Do you have to go into the dr
each day for treatment? Has anyone done ceftriaxone?
-------------------- College Student Suspected tick bite: 07/2007 Diagnosed and started treatment: 01/10 Posts: 33 | From Ohio | Registered: Nov 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What matters more than anything is the expertise of the doctor. Orals are good treatment if you are on high enough doses and the correct combinations.
If your doc doesn't know how to use orals, then he/she probably doesn't know how to use IV either. See what I mean?
I and all my friends got rid of this disease by oral antibiotics only. But, the doc is the key.
For example, I was on amoxicillin 1,500 mg 3 times per day, plus probinecid. The probenicid keeps the body from filtering out the amoxi. So, it is essential to maintain a high enough dose of amoxi. Is your amoxi dose as high as mine?
Plus, the doc had me on flagyl, 250 mg 3 times per day. The tindamax is equivalent to the flagy. I took the flagyl for 60 days straight. I didn't pulse it. That is how I got rid of lyme disease in 2 months on orals.
Then, my doc moved on to treat bartonella and babesiosis.
So, my advice is not to focus on the method of getting the antibiotics into you, focus on whether your doctor is good a curing lyme disease. If your current oral doses are too low, I don't have much hope that the doc will be any better when it comes to IV doses.
Artimesinin is used along with babesia medications to treat babesiosis. Taking it alone, I don't believe, is very useful for anything.
The meds you are on do not treat babesiosis, so you are essentially taking the art alone.
I was told not to take the artemesinin continually. You have to take breaks or the body stops absorbing it. I took art with babesiosis meds and that's how I got rid of babesiosis. So, again, consider the expertise of the doc.
Regarding IV, the IV line is placed in you by a surgery at a hospital, etc. Then, daily, you infuse the medications into it. You have an infusion company that brings you everything you need and teaches you how to do it. They also check up on you once per week, looking for any sign of infection at the site, etc.
You flush out your line, then drip in the meds. It takes about an hour or so. Then, you flush out the line again. Generally, you do this twice per day.
Dangers of having a line are that if you get an infection in your line, you can be dead in 48 hours. So, they teach you what to look for. At the first sign of an infection, you go to the ER to have the line pulled out.
Have you read the Burrascano lyme treatment guidelines found here:
They are a difficult read because they were written to doctors, but they will give you your education on this disease.
You can also look up the recommended dosages of each of your meds, and the recommended combos--what meds should be taken with what.
For example, from page 14, regarding ceftriaxone:
"Ceftriaxone is administered twice daily (an advantage for home therapy), but has 95% biliary excretion and can crystallize in the biliary tree with resultant colic and possible cholecystitis. GI excretion results in a large impact on gut flora.
Biliary and superinfection problems with ceftriaxone can be lessened if this drug is given in interrupted courses (known commonly as ``pulse therapy''- refer to chapter on this on page 20), so the current recommendation is to administer it four days in a row each week. Cefotaxime, which must be given at least every eight hours or as a continuous infusion, is less convenient, but as it has only 5% biliary excretion, it never causes biliary concretions, and may have less impact on gut flora."
You want a doc who knows what they are doing because if you go on this med and bilary sludging occurs, you can end up losing your gall bladder, having pancreatitis, etc. Look up bilary sludging and read about it.
So, the doc is very important when treating this disease. You won't make progress on orals or IV or whatever if the doc doesn't know enough. Many doctors treat lyme disease, but not many know how to get rid of it for someone. I found that out the hard way.
It has now been over 5 years since I completed my lyme treatment (all orals) and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease. But, I had to find out who the good docs were and get to one before I got my cure.
Contact your lyme support groups (see Support Groups on left side of page) and find out if your doc has gotten others well. You want the doc who is getting rid of this disease for people.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lymeboy
Unregistered
posted
typically its a home care kit, and a nurse or the Dr dress it once a week. you do the infusing with the home care. its super easy. They will show you how. The IV helped me quite a bit, but made me feel worse before better. weakened me pretty badly. But lessened my neuro symptoms. Though now I am in the middle of the worst herx of my life with a new combo regimen. The IV works pretty well. I would ask for a cystbuster to go along with it. This is where My IV didnt go far enough , I think. In fact, definitely ask for a cyst buster. 20 days isnt going to do it. you might want to try for a good 6-8 weeks at least. in any case get a cystbuster. You will be miserable, but the bugs will die.
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posted
We got rid of our home health nurse. My husband learned how to do the sterile dressing change weekly (pretty easy), I go get my labs drawn every 3-4 weeks and I order my IV meds from Colorado and infuse them myself. It really is pretty simple. My 9 year old daughters even know how to flush my line and connect me to the antibiotics...they think it is fun.
Cyst buster is a must as it has really kicked in my neuro symptoms, but I am so much better.
Best of luck
Posts: 747 | From Utah | Registered: Apr 2010
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by mallory: How exactly does IV treatment work? Do you have to go into the dr
each day for treatment? Has anyone done ceftriaxone?
I have been on IV Rocephin for three months. That's another word for ceftriaxone, but I don't know why it is used.
My insurance stopped paying for treatment as of last Sunday and I am still trying to figure out what to do about the situation, but in answer to your questions:
Here's how my LLMD handled it: He wrote an Rx for the IV abx. Then he referred me to a home health care agency. They made the arrangements with a local hospital (radiology dept.) to have the PICC line inserted in my arm. That sounds worse than it is. It really isn't bad at all and only took me a total of a couple hours.
That evening the home health agency delivered one week's worth of Rocephin to my home, plus other supplies. They continued to do that weekly for three months.
Once a week they sent a nurse to my home to draw my blood for lab work and change the dressing.
As for the infusion part(getting the abx into your IV/PICC line), my home health nurse taught me how to do it. I did it everyday and it took about half an hour.
Other people order their IV abx from on-line pharmacies instead of using a home health agency. I may do that as well if I continue on IV. Many learn to change the dressings themselves so a nurse is never needed.
I hope that helps.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Wow! thank you all so much for the information. It has been really helpful!
-------------------- College Student Suspected tick bite: 07/2007 Diagnosed and started treatment: 01/10 Posts: 33 | From Ohio | Registered: Nov 2009
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