Should I do IV antibiotics for a month?

I'd like some advice from people on if I should do a month of iv antibiotics or oral or no antibiotics. Here's my story with lyme. I am 24. I don't believe I have chronic lyme yet as it has been about 6 and a half months since my tick bit and chronic lyme is more than a year from what I read. I found a tick and had it removed properly by a first aid person where I worked at the end of May. At the end of July I woke up in the middle of the night with diarrhea, nausea and a fever of 102. I looked at where the tick bit was and it was a red circle the size of a quarter with a dark red dot in the center. I did a month of doxycycline 100mg, 2x a day. I also had a lyme test that came back reactive on all bands but 2.

Anyways, I still have symptoms and things are getting worse and it's almost been 7 months since the bit. I don't believe my original dose was enough. I am an athlete and this has affected my ability to do my hobbies, sports, play instruments etc. I pretty much can't work right now or do anything I used to do and it's very distressing. I also sustained some fairly bad injuries in July in my arms and the lyme probably made it easier for me to get injured. At first the doxy got ride of all symptoms except the injuries just wouldn't heal. My tendons and joints in my hands and arms where a mess and still are. For a while my hands where curled up when i woke up every day and I couldn't lay them flat on a table. Now I can sometimes get them flat on a table but only with extreme pain. I'm working on this with physical therapy though.

So in October I started banderol and some other natural products with a doctor who specializes in treating lyme holistically. I feel a lot better but the main symptoms and inflammation are not getting better and I am getting new symptoms. Now my knees hurt and there is some fluid in them. Still have the arm and hand problems. Soreness and stiffness over my whole body that migrates. Sometimes I get pains in my feet that make it hard to walk. Neck tightness and neck pain. My balance is off and I've fallen 4 or 5 times in the last month. Trouble sleeping sometimes, irritable and not too much of an apatite. Also I feel really foggy and easily confused or not myself mentally. Now I am taking natures sunshine detox products (bowel detox, lymphomax, liver cleanse, yeast/fungal detox, urinary maintenance), lots of supplements and Byron white al complex and banderol.

Long term antibiotics are out of the question for me since I just don't have the money and overall afraid of putting my body through that. Medicaid will cover one month of iv antibiotics and the id doctor I went to suggested I do one month of cefotraixone iv. I had an allergic reaction to cefaclor when I was an infant that caused a bruising rash over my whole body. I am getting an allergy test for cephalosporins to see if I am still allergic. She said we could also do pennicilin G through and iv. But I read that pennicillin G is not effective for lyme. I have also read some scary things about cefotraixone messing up your gall bladder and giving you GI problems. Does anyone have experience with iv antibiotics and recommend it? Also, are there safer antibiotics to take through an iv? I know a lot of people do it longer so I was wondering do you guys think a month would still be beneficial for me since I've had it less than 7 months. I might be able to get a month of oral antibiotics from her after the iv and would continue the natural products for longer. She also gave me the option of doing oral antibiotics but it would just be either amoxicillin 500 mg twice a day or doxycycline 100 msg's twice a day. Overall I'd like to do the iv, just really don't feel good about cefotraixone given the allergy risk, gall bladder thing etc. I would do penicillin G but now I'm not sure that it is a good option either. I don't even know if my doctor will give me another option with iv antibiotics. I'm getting allergy tested for both of them tomorrow so if I am allergic to both then she said she would get out her book and look for something else. I know this is a lot of info but I am really confused about what to do next and don't want this the rest of my life. I have been a physically active person my whole life and pretty much everything I plan on doing in the future depends on me getting back to the athletic level I was at before.

Post Edited (Green33) : 12/10/2014 8:24:04 PM (GMT-7)

Welcome Green33, Everyone's protocol is different and what works for me may not work for you...but I did IV clindamycin and rocephin which seemed to help. To protect the gallbladder I took oral actigall. Is there anyway you could get to a lyme literate Dr? Good luck with whatever you decide.

Hi Green, Welcome to the forum! I just want to say I was where you were at about 4 years ago. I got tick bite in the summer of 2010 and it left an oval rash. Lyme had came to mind but since my rash was an oval form and was not a bulls-eye rash I thought it couldnt be lyme! I thought I just had a reaction to the ticks saliva or something. Around that time, I had lost the man who I thought of as my hero-my grandfather, so I had been severely affected by that so was a bit blurry thinking on things during that time also.

Time elapsed and more and more physical symptoms kept coming up. I had a bad sinus infection that would not go away. My knee's started to hurt. Had CRAZY anxiety/panick attacks. My neck was going stiff. My back between shoulder blades was hurting. My heels of my feet were hurting-when I got out of bed I was walking funny until this leveled out in day some. Omgoodness, there was more Im sure.

I finally kept doing more extensive research on EVERYTHING and lyme made sense. Afterall, yes I was grieving the loss of my grandfather but all *this* shouldnt be happening. I was a very physical person! A real busy body & Go-getter!

So, after some hospital visits for (false) diagnosis's of chest pain, aseptic meneningitis, anxiety, etc......the doctors there kept saying if its lyme you need to see an Infectious disease doctor. They referred me to one.

I will say he was very nice and had a kind way about him. At this point, like you, it had been about 6-7 months since I pulled tick off me.

I did not have a positive lyme test(He knew the tests were always not reliable w/lyme) but he treated me with a month of oral Amoxicillin 875 bid. This helped "a lil bit". Then after that month he broke it down to me--I could either stop now or he could provide *one month* longer of IV Rocephin(ceftriaxone) treatment-my choice.....but he said anything after that if this treatment did not kill it, it would be considered "post lyme syndrome" and that would eventually just go away.

Sooo, I didnt know much but from what I had skimmed across on internet...IV rocephin picc line seemed like the way to my health returning! Woo-hoOOo.

I opted for it for the month and the nurse would come to my home. After the month they pulled it out.

So thinking hey, he's the doctor, well he knows whats right. I went ahead tried to be confident that lyme would be a thing of the past.

Months went by I wasnt too bad. Then a year had passed but I still wasnt *right*. Some new symptoms began to come on. After about a year, I definitely knew it wasnt any darn "post lyme syndrome" going on!

I started looking for an LLMD (Lyme literate medical doctor) but really didnt get a fire under my a** until last year around March 2014 because CRAZY symptom stuff started happening. While Im still not better now, Im happy to say Im not where I was in March but I have a ways to go still and sadly there really isnt even a certain time frame that I will BE healthy. Its hard. The lyme has got in my nervous system now.


All in all, mostly everyone here knows the deal with getting treated by an ID doc. They have these ridiculous book "guidelines" that they have to follow and that includes 1 to 2 months (if your lucky to get 2 months!) treatment....and after that, thats it.

I didnt know any better, so thats why Im hoping my story will help give you the knowledge I didnt have.

Looking back, I think because I was semi-early that the amox and rocephin wouldve did the trick. BUT, I ended up finding out once I got to my LLMD that I have co-infections that came from the tick also. They say about 50% or more dont just get the lyme but the Co's in addition as well. They are referring to this alot as MSIDS(Multi Systemic Infectious Disease Syndrome) these days.

Co-infections need to be treated with different meds. Especially babesiosis. If you dont get rid of the co-infection(s) while treating lyme, then you dont get better from lyme hence what pretty much happened with me.

So if the ID doc would have even considered this, and if I was not so naive in trusting him....I would be well already a long time ago! Unfortunately, the ID doc didnt even address co-infections with me.

If I were you, def take what good treatment you can get. Hopefully you can tolerate the Rocephin. I personally wouldnt worry too much about the gallbladder thing with only a months worth of IV. But the thing is it would be BEST if you can get to an LLMD that way he can treat everything. You said that is out of the question financially then you may have to resort to an herb protocol.

On the upside, my mom had lyme and got better with 1 month IV Rocephin! She must have only had lyme. So this could be the case for you (*Hopefully*) but if you are still having any symptoms following treatment, you are going to most likely have to pursue further treatment. Lyme & Co's are pretty complex bacteria esp when given the chance to dissiminate.

Moral of the story--just dont wait around and listen to the ID doc like I did :-// Keep on it so you dont become chronic and then it is much harder and the aim turns more towards a remission than a cure.


Best to you & Hugs-Courtney

(P.S. I thought that was going to be short but hopefully you got a good analysis of what happened to me so it DOESNT happen to you.....)

I may have co infections. My llmd said one of my rashes looks like Bart so my id doc just ordered a Bart and babesia test. Over all I'm wondering if there are other iv antibiotics. Not sure I want to take the cefatriaxone because of the allergic reaction I had to cefaclor. Does anyone know if pennicilin is good for lyme? It said in the illads website that it is not but if so many people use amoxicillin and it's in the pennicillin family then I would think they would be the same effectiveness. Can you do doxycycline in an iv or something similar? What drugs treat Bart and babesia? The studies I read on cefatriaxone had 30 percent of people having bile sludge problems and it says that 40 percent of the bile from the drug is dumped into your GI track. That just sounds like something that will be terrible for the body.

Thanks for revising your post Green33!

I am also glad you have an LLMD and that she's an ND! Perfect combo… some people search and search for someone like that.

I have a long sordid past w/ lyme & co that I won't go into. Suffice to say, I was likely infected 15-20 yrs ago. At the time I started seeing my LLMD I had read that chronic late stage needs abx but there seem to be some objection to that theory as well. I started with BW AL-Complex, A-Bart and A-Bab and had some good reaction—except to the AL-Complex. I had a "CDC-positive" IGeneX Western Blot for lyme, a weakly positive Fry Lab Bart test, and negative Babesia Duncani and Microti tests—but those are only two Babesia strains and at the time, Babs were my most dominant sx. Now, I'm not so sure.

Anyway, my LLMD does participate in a few insurance programs so I signed up with one of them so that it would be easier for me to get coverage. So far, it looks like I'll have three months of the IV Ceftriaxone covered (I'm at 1g per day now, likely increasing to 3g per day) and then she's adding in other abx—not sure what yet and malarone or mepron for Babs. I don't know how insurance coverage will be for the other abx yet… will have to cross that bridge later on.

I know some posters here are interested enough in the IV treatment that they are paying out of pocket, which could be as little as $300/mo or thousands—depends on your tx. It's a good idea to start out with home health care, but once you get used to the process for infusions, you can learn to do this on your own and forego the nursing costs.

Also, you need to decide if you should get a PICC or a port—to administer meds intravenously (by "IV").

- A PICC goes in your arm—a catheter is fed through the main artery coming out of your heart that goes into your arm—so it's a longer catheter that goes from your arm towards your neck and into the artery next to the heart.

- Or, you could get a port—this is a typical mechanism for chemo patients and it's a small round "pump" device (about the size of 6 stacked quarters) with a penetrable membrane over the front. They install it beneath your flesh about 2" to the south of your clavicle and a catheter is hooked up to it and threaded through the artery coming out of your heart—a shorter catheter since it's closer to your heart.

- Some people have no issues with either device. The PICC is said to have some shortcomings as the "opening" in your arm for the catheter area is prone to infections—it's the tube that comes out of your arm and that's what you hook up your syringes to for your injections.

- The port is all under the surface and once the installation incisions heal there is nothing "open"… but it comes with other complications—to facilitate infusions they punch a "huber needle" through your skin and through the membrane into your port. The needle is like an IV needle and is connected to tubing, and for your injections —very similar to the PICC. But the huber needle stays in all the time and sticks out about 1" from your chest—since the area around the needle is "open" you have to wear a badge over it all the time and no showers. My tx is 5 days a week so the needle goes in on Tues and comes out on Sat. I am stinky during those days and I'm showering like a fiend over the weekend.

I have severe GI issues and didn't want to make them worse by taking oral abx—so that was my main determining factor for doing IV. I was told multiple times that since I'm likely going to have long-term IV abx, the port will be less fussy. That might be true in the long run but I've had several complications with the port in the 5 wks I've had it in. I can share if you are interested.

I think the decision to go IV or not to Go IV… is based on what YOU prefer, how your LLMD wants to treat you (some people are lucky enough to have an option and choose a specialist based on what tx the specialist prefers that they like or their insurance participation) and of course, as you have stated, the tx that you can get covered.

I know that some people have done only one month of IV. If you think that is the best approach for you, and your sensitivity is not an issue then try it—like another poster mentioned, there is probably not much risk in one month. My LLMD also prescribed the Actigal. If you feel you have made huge progress in that one month, then perhaps you can pursue another month and figure out a way to pay out of pocket or buy meds over the internet.

Or perhaps after that month you might find that it didn't work as well. There are risks with the oral abx as well but that might be an option for you. And some people don't tolerate either and end up with the herbs. And you'll find lots of posters here who won't touch abx and are doing really great on herbs from the get-go. There is not one optimal approach to clear lyme & co…. not yet. And with most patients, we start out going down path A and eventually end up on path Q by the time all is said and done. Our treatments require a LOT of trial and error by both us and those who are treating us. They are all learning in many ways as much as we are.

Not sure if I hit all your concerns—hope that helps. Let us know if you have any more q's and what you decide!

-p

THat's good. Time will help. I also had a delay when I started and that helped me really dig into what I was about to take on.

BTW—
forgot to mention this. WHen the nurse first injected the ceftriaxone I had a little bit of light-headedness and itchy eyes. When I injected myself, I went a lot slower (one ml per minute) and had no problems at all. They give you an epi pen for any emergency.

-p

Green, I cant take penicillin as I have an allergy but can take amoxicillin so maybe you can handle the Rocephin(ceftriaxone) okay like you said since it is a new generation cephalosporin and not the cefaclor.

Unfortunately the allergy test only tells if you will have a severe anaphylactic reaction which I did not have. I had a delayed reactions about 10 days later. It was a bad rash sort of thing. But apparently many children reacted bad to cefaclor and it was discontinued. They will watch me during the first dose but unfortunately I won't know in advance if I will get a reaction similar to the last. I will probably take the risk.