I have been taking Samento for over a month and I would like to start antibiotics, as well.
My doctor said I might be able to go on IV - do you think it's a good idea to start on IV? If so, what do you recommend? I am quite put off about Rocephin after hearing so many people getting Gall bladder problems, severe herx's etc...
If you don't think starting on IV is a good idea, why not? And what oral antibiotics would you suggest?
My main symptoms are;
Fatiuge Aches and pains (joints and just about everywhere) Confusion/dizziness/can't concentrate Vision problems Anxiety
They are my main 5 symptoms. I have been ill since Nov 2003 and havent been able to work. I am housebound most the time.
Any help would be good.
Posts: 263 | From UK | Registered: Mar 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I personally have only taken oral abx. It is easier logistically, often easier with insurance, and not so obvious to others. I also live alone and have cats, so a picc line would be very difficult...I would't want to clean litter with a picc line in my arm
I felt it made sense to start with orals and leave iv as a possibility if necessary.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Chris,
Rocephin seems to be the primary IV antibiotic used to treat Lyme. Some have used IV Doxycycline or Claforan. Rocephin seems to give people a good jump start but seems to be followed by a lot of relapses, especially if the patient isn't on a combination of Rocephin and an oral.
Since you sound like you are not very active right now, having an IV in your arm might not be too inconvenient. For people who are active, it can be very confining. Rocephin can also be given IM (intramuscular). Mixed with Lidocaine, it's relatively painless and doesn't impede activities.
Another option might be a combination of Benzathine Penicillin G and a macrolide such as Clarithromycin. Many here, including myself, have done well on that regimen. If you use the search funtion on this site and type in Bicillin, you will read about a lot of satisfied customers.
A lot of people have gotten good results with orals only. Others will be along to offer ideas.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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I was going to go into hospital and have IV, not at home. The hospital is just down the road so I can go home after having the infusion - which will save money, also I should be able to get the antibiotics free from my NHS doctor, which is an added bonus. It will probably only be for 4 weeks if I do decide to do it, after the 4 weeks I would finish off on orals. Has anyone had good improvments on IV Doxycycline? I would go for Rocephin but I have heard so many people have 'Gall bladder attacks' it kinda scares me! Posts: 263 | From UK | Registered: Mar 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
My recommendation is that you factor into your consideration the sustainability any given intervention. If you have been ill for three years, this is going to take a while.
If you are facing an arbitrary cut-off point with IV's, you may be better off to stay with oral and/or intramuscular preparations.
posted
I was treated entirely with orals. I agree that IV Rocephin has many pitfalls. I've heard plenty of negative stories here over the past 5+ yrs.
If I did Roc it would be for a short period of time, followed by orals. I think the Bicillin shots are great too, but I didn't want to give myself that kind of shot!
[I've done years of other shots, but they are much easier to do for yourself than the Bicillin in my opinion.]
The main thing is to find a good LLMD who comes HIGHLY recommended by several "happy satisfied customers."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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I do have a great LLMD that is recommended by tons of people, the problem is he is extremely busy and his office is the other side of the country, so I do phone consultations - I have only spoken to him for 30 mins when he told me he had seen the spirochetes in my blood, I decided to try Samento because I was a bit worried about going on long term antibiotics - I'm not worried anymore though. There are only 2 LLMD's in the U.K. I did find a doctor in a private hospital 5 minutes from my house who has treated a few others, he is the one who said I might be able to go on IV. I have another phone consultation with my LLMD in a month, so I will ask him about IV. I just wanted to hear suggestions from other sufferers. I just feel people in the U.K fight and fight with their doctors to get just oral antibiotics, and I am fortunate enough to have been offered IV by a doctor just down the road for practically free and if it will be more effective and give me a boost I will go for it.
Keep the suggestions coming!
Posts: 263 | From UK | Registered: Mar 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Hello
Did the Dr recommend IV as the best option or did he offer you the choice of which you wanted to be treated with?
It sounds odd that a Dr would ask what you prefer rather than say what he prefers. This to me puts up a red flag.
If you were given this option the correct response should be to ask which he recommends and why. If there is a toss up in his mind, then fine... read on.
In terms of general guidelines,on initial treatment the use of IV is indicated only with certain manifestations.
Severe neurological and /or severe heart involvement are really the only two indicators for initial treatment with IV.
This route is to a large degree driven by cost, but IV antibiotics can also be much harder on the body than orals.
There have been more cases of people dying from alergic reactions with IV anti-biotics than for orals, mainly becase IV gives you a much higher peak dose in a much shorted time.
In general, oral or IV antibiotics both work but IV works faster.
Unfortunately faster is not always better in the case of Lyme.
IV drugs are expensive relative to orals so if orals work the preference is to go with the orals first.
In some cases specific orals do not work that well and only help in slowing down the infection. In that case some Dr's would switch to a different drug or go the IV route.
Beyond general comments like this, I don't think anyone can advise you on anything more specific.
The above guideline are recommended by both ILADS and the IDSA. The duration of treatment is however, a totally different story.
Also on the spriocettes observed in the blood. It is VERY rare to see free floating spirocettes.
Are you sure you didn't mean spirocette anti-bodies?
good luck
Posts: 1184 | From north america | Registered: Feb 2003
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posted
david said, "It sounds odd that a Dr would ask what you prefer rather than say what he prefers. This to me puts up a red flag."
I think that depends upon the dr and how he worded it. My LLMD gives his patients a choice and a say in what they would like to try.
I don't think that's always a bad thing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I agree with your comment about it not being a bad thing in all cases.
My Dr does also offer the option but he phrases it, "do you want to try the IV route" this after explaining why that is an option that might be bennificial and its pit falls.
On the other hand, if he said on initial visit/treatment it's your choice which treatment to use, I would be worried that he has no idea what he wants to do or why he wants to do it and even more worried that he has not weighed the risks/costs involved in each option.
Hope that clarifies what I wanted to convey.
Posts: 1184 | From north america | Registered: Feb 2003
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I just wanted to let you know that zinthromax is also an IV option.
I have had success with both orals, bicillin injections and IV.
Best wishes in whatever you and your dr. decide will work best for you.
I think I might try the orals first then, and if I don't see much happening it's good to know the IV route is there. My Doctor (not my LLMD) said I could go on IV but he is listening my LLMD. They both know each other from a while ago. My LLMD uses a Bradford Darkfield Microscope to see the spirochetes - A bit like the Bowen test I think.
Posts: 263 | From UK | Registered: Mar 2006
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bettyg
Unregistered
posted
breaking this up for us neuro lymies to read...
Chris, please hit enter often and double space each paragraph ok; thanks so much.
Good luck on your treatment. I've been on orals for 20 months; no desire to go on IV. Bettyg
quote:Originally posted by ChrisBtheLymie:
Thanks for the replies.
I do have a great LLMD that is recommended by tons of people, the problem is he is extremely busy and his office is the other side of the country,
so I do phone consultations - I have only spoken to him for 30 mins when he told me he had seen the spirochetes in my blood,
I decided to try Samento because I was a bit worried about going on long term antibiotics - I'm not worried anymore though.
There are only 2 LLMD's in the U.K. I did find a doctor in a private hospital 5 minutes from my house who has treated a few others, he is the one who said I might be able to go on IV.
I have another phone consultation with my LLMD in a month, so I will ask him about IV.
I just wanted to hear suggestions from other sufferers. I just feel people in the U.K fight and fight with their doctors to get just oral antibiotics,
and I am fortunate enough to have been offered IV by a doctor just down the road for practically free, and if it will be more effective and give me a boost I will go for it. Keep the suggestions coming!
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