posted
I have been on disability for 12 years, but only 6 months ago did my doctor say I might have Lyme. Oral doxycyclene makes me throw up. 100mg. I've tried for a few days to find out about the IV antibiotics, but can only find bits and pieces. 1) IV won't hurt your stomach? 2) Do you go to the hospital or clinic or what? 3) How long for a session and how many days a week? 4) Can they add things to the IV bag besides just antibiotics? Like saline or demerol? 5) How does Blue Cross approach this therapy? 6) Is there an injectable to the muscle doxy I could use instead? 7) What about the risk a trainee nurse might make a mistake? They tried to kill my Dad TWICE in the hospital. I'm telling you, I'm not looking forward to the diet, the exercise, the meds, all at the same time and for two straight years or longer. I'm not used to asking for help, but anybody who has been through this, I will appreciate your reply. Thank you.
Posts: 18 | From No. Va. | Registered: Aug 2007
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Do you have a lyme literete medical doctor (LLMD)? Since you have been sick for an extended period of time you will need strong oral antibiotics or IV therapy. The key to getting good treatment is finding a doctor that understands the disease.
Are you only on 100 mg of doxy a day? Most people need at least 400 mg to penetrate the blood brain barrier. Doxtxycline also upset my stomach so I had to eat a huge meal before taking the medication along with anti-nausa medication. You asked about IV antibiotics
I am currently receiving IV Rocephin 2 times a day for five days a week. I do the infusions at home myself using my PICC line. It is actually pretty easy and is not painful at all.
Depending on the doctor you can take other medications through IV too, including doxycycline. They can also draw blood and give your saline through your IV. From my understanding, doxy takes about four hours to infuse via IV.
Depending on your doctor will determine how long you will need antibiotics or if IV is even right for you. Please consult with your doctor with these questions.
Take care, Lindsay
PS: I have BCBS and they are paying for my IV antibiotics and for a home care nurse. However, modt insurances will only pay for a few months of treatment. Theres also a risk for complication with IV just liek there are with any medications!
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
I think he's LLMD, he is quite a drive for me, and this is all just dawning on me. I fell off the tilt table in 7 minutes. My pituitary and thyroid don't work. My SPECT showed CFS. My psychologist said I was clinically depressed. I thought you weren't allowed to eat with doxycyclene. Do you have like a shunt in your arm? What's a PICC? Rocephin can be taken in place of doxycyclene? I just found out I had Babesia last visit, so we're concentrating on that. THANK YOU for your help.
Posts: 18 | From No. Va. | Registered: Aug 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Have you been tested for co-infections?
Do you see a llmd?
Have you ever thought about using IM bicillin LA?
I think you should double check and make sure your doctor is knowledgable about lyme and other TBD's.
I would hate to see you treat lyme with IV, without addressing a possible co-infection first.
Feel better.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Without writing a book here, I have problems that you don't need to hear about,anxiety attacks, brain fog, issues. I am being treated for babesia right now. I have never had a positive for Lyme disease. I definately can't handle oral doxycyclene. Which is what my doctor was hoping I could handle. So I've got two weeks to prepare before I see my doctor again. I only get 11 minutes every 2 or 3 months. I want a clear definition of my problem and a clear plan of action. I'm the last one who should be in charge of this. I've seen one hundred doctors the last 12 years. I searched IV before I wrote this and read threads for days. I guess I'll just have to stand in line like everybody else. If anybody clicks with all my questions from your past, I'd love to hear from you. And I appreciate everyone's help. Thanx-Grady
Posts: 18 | From No. Va. | Registered: Aug 2007
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posted
Thank you, I just looked it up. My dad had a calf vein sewn in his arm for dialysis. This actually looks pretty good. I could handle that. If I get meds from Caremark (bluecross) I can get anything for three months for $35. My Mepron that costs $1200 cost me $35. So if I could inject myself, or hook up a drip in my own bed? I could handle that. I'll ask my doctor, thanks.
Posts: 18 | From No. Va. | Registered: Aug 2007
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posted
Grady, Eating with doxycycline lowers the effectiveness of the medication but not by much. Just be sure not to eat dairy products with it. My doctor told me it would be better to eat and take it then end up throwing up the medication.
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
See below:
1) IV won't hurt your stomach?
With IV you will not have the upset stomach. It will likely give you the runs for a few days if you have not already had the pill form.
2) Do you go to the hospital or clinic or what?
You can infuse at home, on your own. Some people go to a clinic, some have home care. The infusion takes 2 hours
3) How long for a session and how many days a week?
As per above, 2 hours per infusion, 7 days per week (some might do it 4 days on, 3 days off).
4) Can they add things to the IV bag besides just antibiotics? Like saline or demerol?
The powder from antibiotic is mixed into a 500 ml saline bag. I strongly doubt that they would mix anything else into the bag due to the posibility of chemical reaction.
5) How does Blue Cross approach this therapy?
I have no Idea.
6) Is there an injectable to the muscle doxy I could use instead?
No. The drug is relatively caustic so you will need a central line that pipes the IV directly to the heart where there is a high volume of blood to dilute it.
7) What about the risk a trainee nurse might make a mistake? They tried to kill my Dad TWICE in the hospital.
If you use a pump it is quite difficult to screw up the infusion. Of course if you pump too fast or pump air, this could be a problem. In either of those cases it hurts like hell so you have plenty of warning.
I have first hand experience with both oral doxycycline as well as IV form. BE AWARE THAT DOXYCYCLINE WILL REDUCE THE EFEFCTIVENESS OF MALARONE OR MEPRON.
Why are you going on doxy as a first IV, I would have figured that it would be ceftriaxone (rocephine) as first go?
Posts: 1184 | From north america | Registered: Feb 2003
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posted
My doctor has never even mentioned IV, and to be honest I didn't even want to ask him about it til I found out how it works. I reread some of the many blood tests I've had over the past ..almost two years. He's been trying to make the case for Lyme, but repeated tests showed I didn't have it. I didn't have babesia on one test, on another I did. My last visit was the first postive babesia test, 1:160. You know how sometimes doctors are stupid, and sometimes you think they're stupid but they're not? It wasn't til the positive babesia test that I googled NMH and Lyme together. And then all my problems fell in line under chronic Lyme disease. Pituitary, thyroid, panic attacks, depression, CFS, I approached them all singly, one at a time over 12 years. The doctors avoid talking about one of the main symptoms, being poor after working 25 years. Losing your job, house, friends, health, everything. My biggest fear of having to go to the hospital for the next 4 years every day has resolved, thank you. My doctor has been trying to sell me on Lyme for awhile, but since I've been tested for it for over 12 years with no evidence, I thought he was grasping at straws. But slowly I'm coming around. I'm not looking forward to changing my life AGAIN for lyme. Special diet, special exercise. I've tryed every one there is, with miserable results. I guess you all know the story. I think with your help, I'm coming around. My moments of clarity are terrifying! I'm sure I'm not a good patient, after driving an hour in traffic, sitting in a waiting room and then having just 10 minutes with the doctor is bad when you've been doing it 12 years with no real results. Live in hope, die in despair. I think now my doctor is doing the right approach. It's just after so long the recovery is going to be long and tough. Even if I get well, I'll be an old man. Nobody buys wisdom. It's too expensive. Once again, thanks for the help everybody, I think I'm starting to make sense of this, it's like learning a new language. It will take awhile to sink in. If I had THE book on the subject, I'd read it over and over. But the facts change all the time and there is debate over which book is best. I'm going to have to get my tablet out and write my own book. I'm in the research stage. Too bad I never went to Med School. There's alot to digest. By the time I can understand what's going on, I'll be cured. It's doom alone that counts. Whew, I think that does it. I feel better and more optimistic than before I wrote this. Thank you again, I'm glad I found this site and to Condor, who linked me here. After going down countless blind alleys, I hope I'm finally on the right road. -Grady
Posts: 18 | From No. Va. | Registered: Aug 2007
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