posted
Hi, My husband was diagnosed with Lyme 2 months ago. He was on oral antibiotics for two months and is now on the generic IV Rosephin. I am wondering on average how long it takes until someone may start to feel better. Also, my husband's doctor said that in New York, the insurance will only cover 1 month of IV treatment. If other people have had this experience, what did you do after this one month? The doctor said we could either go back to oral antibiotics or we could pay out of pocket for the IV. Thanks for all of your help.
Posts: 25 | From New York | Registered: Feb 2009
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posted
I had to pay out of pocket for my Rocephin and supplies. The insurance company would pay for the nurse to come out once a week to change the dressing.
I was originally on for 6 months and had tons of improvement after 5 weeks. I kept getting better but then had to have the line pulled because of gallstones.
I am not sure how long it takes but I would have stayed on if not for my gallstones. I had to have my gallbladder out but the doctor pulled the picc anyway.
I live in NH but my doctor is in NY and he even wrote my insurance company a letter but they wouldn't pay for more than 30 days.
I never understood why they would pay for picc line maintainence but not the medication...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
Wow. How much did you have to pay for the medication (if you don't mind me asking)? After you went off, did you continue taking oral antiobiotics. Are you better today? Thanks alot!
Posts: 25 | From New York | Registered: Feb 2009
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posted
i have been on it since feb. slowly getting better.
did have gallbladder issues and had gallbladder removed 2 wk ago (new portal lap, 1 incision procedure) and kept on dosing. missed the day. dose day of the surj only bc hubby wanted me to sleep--i planned on doing infusion. was home from surj. by noon.
so far, no prob. with insurance. LLMD at this appt said expect another 6-12 mo. of aggressive tx. first time we have been given an "estimate" since dx.
i have VERY good home health nurse (who i trained.. She has documentation every week when she comes out to access my port , showing continued issues, improvements, pain, etc. her notes go to ins. co and help justify ongoing tx.
this part is importnat. more that people realize. if getting home health, be involved. your nurse should be asking questions that cover all body systems (neruo, heart, GI, GU, new/changed med, med teaching, cognative issues) The better the documentation, the more you have in your corner
if u have a nurse who comes in, and takes vitals and leaves without assessment every visit---- you have the right to request a change of home health nurse and entire company!!!
hope this info helps!!! documentation can make/break a case
if i can help explain this anymore or if have specific questions PM me, been in the business for over 10 yrs
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I and my friends and acquantances all got well taking oral antibiotics only. Anymore, IV is usually only necessary for very severe cases of lyme with lots of neurological (brain) involvement.
Have you read what the Burrascano guidelines say about Rocephin (ceftriaxone) treatment? Here is a quote:
"A subset of patients who have severe, longstanding illness due to Borrelia burgdorferi carry persistent infection despite having previously received antibiotic treatments which have eliminated the disease in less ill individuals. ...
One successful approach in the more ill patient, published in the early 1990s, is to use higher doses of ceftriaxone in a pulsed-dose regimen...
Treatment with ceftriaxone is dosed at 4 grams daily- given either as 2 grams IV twice daily, or 4 grams slowly once a day, four days in a row each week, usually for 14 or more weeks. Such a regimen is not only more effective in the Chronic Lyme patient, but regular interruptions in treatment lessen the potential complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis.... This regimen is now considered the current standard of care in the use of ceftriaxone." (p.16)
So, we would have to have a lot more information before advising you on necessity of Rocephin in this case. Is your husband a patient with a severe, long-standing case of lyme that has not responded to other lyme treatment (oral, etc.)?
If not, then I would try more conventional lyme treatment before paying out of pocket for IV. As you may have noticed, Burrascano says 14 or more weeks of IV Rocephin may be necessary.
Also, a person may start to feel better at any time during treatment. No one can tell you how long it takes on the average. There is no such thing.
Some people may start to feel better on IV and as soon as it is stopped, they feel worse. In fact, with lyme treatment, the patient often starts to feel better and then feels worse. That's just the way it is.
When a doc switches drugs and more disease is being killed, the patient often feels worse temporarily, but over time eventually feels better than before that drug was added.
You may want to inquire as to why your doc decided to put hubby on IV at this time since it seems rather early in his lyme treatment. The reason for his action is the key to what you should do.
Suggest you become familiar with them. This is the best reference document regarding good lyme disease treatment that exists.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
My husband became sick in October, but was not diagnosed until 2 months ago (we had seen tons of specialists and no one knew what was wrong). He was on oral antibiotics (amox and flagyl) for 2 months and no change. This is why he was put on the IV. I think the infection was building up for so long that now it is going to be more difficult to treat. He does the IV once a day (1 gram). I am hearing all of these problems with the gallbladder. Is there any way to prevent this??
Posts: 25 | From New York | Registered: Feb 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
October 2008 until now is not considered "long standing illness."
I had lyme disease undiagnosed for 10 years at least. That might be considered long-standing illness. Nevertheless, I got well with just oral antibiotics.
So, your husband has been ill only a few months with lyme disease if you are correct on your October 2008 date. That is considered very recent illness. Anything less than a year is recent.
Typically, lyme patients take years to get a diagnosis. So, your husband is extremely lucky. His story is not typical, believe me.
Sometimes it takes looking back with a knowledge of lyme symptoms to really know when a person began to show symptoms. Sometimes a second tick bite brings on the major symptoms, but minor ones were there for years from an earlier tick bite. You will have to think about this to decide whether or not October 2008 was the real start date of his illness.
This is my main message to you: The doc is the key to getting well from this disease. Study the Burrascano guidelines and find a doc who follows them. Ask the doc if he follows them. Then, don't take his word for it. Compare his treatment to the Burrascano guidelines and see if it lines up. Many doctors SAY they follow Burrascano, but they really don't. It's up to you to decide whether or not the treatment hubby is getting lines up with Burrascano guidelines.
I recommend that people only go to docs who follow the Burrascano guidelines. He is the guru regarding lyme in this country and around the world.
If my doc wasn't following Burrascano, I would find one who does.
Find the most experienced one you can because lyme is a very complex disease to treat. (That's why it takes Burrascano 37 pages to tell docs how to do it.) It takes many years of experience to have a good success record with this disease.
Did the doc test him for co-infections through Igenex (a tick-borne disease specialty lab, recommended by Dr. B)? This is a must. At first appt, this should be done. Then, the doc knows what diseases he must treat. If hubby tests negative for certain coinfections, but has the symptoms of them, the doc is to treat him for these coinfections anyway based on the symptoms. The diagnosis of these diseases is always based on symptoms, not test results as no tests are 100% accurate for lyme and its coinfections.
Usually, a good Burrascano type doc will start the patient out on lyme treatment AND babesiosis treatment together (if it looks like the patient has babesiosis). Then, treat lyme and bartonella together, etc. In other words, a good doc treats for lyme AND one of the coinfections together and advises the patient not to expect any change for a number of months.
Your doc treated only lyme for 2 months. (Amoxi and flagyl are lyme only treatment). Rarely will a person feel better on that treatment alone.
Generally, it takes a number of months of high dose combination antibiotic therapy to even start to feel better.
If he has a bad case of babesiosis--and he has not be given anything for babesiosis yet--he will never feel better until he is treated for babesiosis along with lyme treatment.
Most people with lyme also have babesiosis. That requires treatment with levaquin and mepron and artimesinin.
You need to study the Burrascano guidelines. Here is a quote regarding babesiosis (piroplasm):
"Piroplasms are not bacteria, they are protozoans. Therefore, they will not be eradicated by any of the currently used Lyme treatment regimens. Therein lies the significance of co-infections- if a Lyme patient has been extensively treated yet is still ill, and especially if they are experiencing atypical symptoms, suspect a coinfection.
From the literature:
� ``Co-infection generally results in more intense acute illness, a greater array of symptoms, and a more prolonged convalescence than accompany either infection alone.''
� ``The possibility of concomitant Babesia infection should be considered when moderate to severe Lyme Disease has been diagnosed.''
Babesia infection is becoming more commonly recognized, especially in patients who already have Lyme Disease. It has been published that as many as 66% of Lyme patients show serologic evidence of co-infection with Babesia microti." (p.22-23)
One of Burrascano's major points is that lyme doctors MUST test and treat for coinfections. People don't get just lyme disease from a tick bite. They get a whole soup of diseases. Each one requires different treatment. Read it in Burrascano.
If we knew your husband's symptoms, we could make a guess as to what coinfections he has since each disease has some unique symptoms. He needs treated for every coinfection he has and every one you suspect he has too!
Regarding the gallbladder, look up what Burrascano has to say. Looking at the document online, you can search for any word. Search for "biliary" and read what he says.
Here are two quotes for you:
"When choosing a third generation cephalosporin, there are several points to remember: 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." (p. 14)
"Ceftriaxone- Risk of biliary sludging (therefore often Actigall is co-administered- one to three tablets daily)." (p. 18)
So, to try to prevent gallbladder problems, he is saying to take Actigall with the Rocephin or to take cefotaxime instead. It has a very small effect on the gallbladder.
Believe me, I am very glad my doc (a now famous lyme doc who follows Burrascano) never put me on IV. I would rather not have to worry about having to have a gallbladder removal surgery, problems with the IV line, etc.
I know the Guidelines are not an easy read since they are written for doctors and use medical terms. But, there is no substitute for getting an education on this illness.
Sorry, but I don't think 2 months of lyme only treatment with no change calls for IV treatment. I think the treatment should have been addressing more than just lyme disease. It should have included coinfection treatment appropriate to your husband's symptoms. Also, 2 months is rarely long enough to notice a change in the patient infected with lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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Member # 14183
posted
By the way, Burrascano says to give 2 grams every 12 hours of the IV Rocephin (Read it at top of page 18) OR 4 grams slowly once per day (p. 16)
So your husband's treatment does not line up with Burrascano at all. It is way too low--1 gram versus the recommended 4 grams per day.
Perhaps your doctor's doses of doxy and flagyl were too low also. Read Burrascano for doses and compare to what doc gave your husband.
Low doses of antibiotics will never get rid of lyme disease and its coinfections.
How did you find this doctor?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi, Thanks for taking the time to give me all of that info. I actually found the doctor through this website when I suspected that my husband had Lyme. He was tested at IGINEX and has the coinfections Rocky Mountain Spotted Fever and Chronic Ehrlichiosis. He was put on Doxyclycline before the other antibiotics. My husband started to feel symptoms in October 2008, but I think this was building up in his system way before October. I will look into these guidelines you talked about. I am not sure if his doc follows them, I suspect he doesn't since the treatment doesn't match.
Posts: 25 | From New York | Registered: Feb 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just so you know, this site gives the names of all doctors who believe in treating lyme disease until symptoms are gone. Some docs are better than others. Not all can be top notch. It is your job to find out from other lyme patients who is the best at getting people well.
I got all my lyme doctors through the lyme support groups on this site. The first 2 didn't follow Burrascano.
I wasted two years of my life with these guys, continuously taking antibiotics.
Once I learned that Burrascano was the lyme guru, I had my husband take me to hear him speak at two lyme conferences. Burrascano is the name that draws a crowd anywhere in the world that he speaks. It was obvious to me that he knew a lot more than my current lyme doctor.
Even so, I still didn't leave my current doc until his treatment failed me and he told me it looked like I would just have to remain on antibiotics for the rest of my life.
Then I called a lyme support group and asked for a doc who followed Burrascano. Bingo!
It took 1 year with the Burrascano doc and I was rid of all my diseases. I finished treatment 4 years ago and am symtom-free, enjoying my life.
For 5 years now I have been sending friends and acquintances to Burrascano type docs, and I have seen over and over that they are the docs who are getting people well.
That's why I still hang around LymeNet--to spread the word of how to get the best doc right off the bat and get rid of these diseases without having to spend years and years doing it.
The Burrascano Guidelines are the ones recommended by the International Lyme and Associated Diseases Association (ILADS), BettyG in her message to newcomers, and everyone in the lyme community.
Burrascano's lyme treatment guidelines are the only ones on the ILADS site. ILADS is the website that represents us against the rest of the medical community.
ILADS is the one that says lyme is difficult to get rid of and takes long courses of antibiotics.
Burrascano's Guidelines are the gold standard for lyme disease treatment.
If your doc is not giving the Burrascano recommended doses or combinations of drugs, don't expect anything good to happen. Burrascano developed his expertise by treating lyme for over 25 years in the most endemic region of the country--New York at the Hamptons.
He testified before the United States Congress in the 1990s regarding the inadequate treatment lyme patients got from the medical community and why the medical establishment was not doing anything to correct the situation.
His fame is world-wide.
Please contact some support groups and ask for a doctor who follows the Burrascano guidelines. You can also ask for other peoples' experiences with your current doc. Has he gotten anyone well?
According to Pam Weintraub in her book "Cure Unknown," the lyme docs in the northeastern part of the U.S. have become afraid to treat aggressively as required by the Burrascano guidelines. They fear being hauled up on charges by medical boards like Burrascano himself and many of the Burrascano type doctors have been. They have changed how they treat lyme patients based on fear.
So, it may be difficult for you to find good treatment for hubby in your area. But, don't give up.
A Boston TV station did a great show on lyme disease a few months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
In the case of lyme disease, the patient really has to learn about the disease and evaluate the doc's treatment of them. That's what the Burrascano guidelines allow the patient to do.
Please educate yourself for your husband's sake.
You can send me a private message if you would like to talk further about this.
Posts: 9931 | From Maryland | Registered: Dec 2007
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My LLmD has told me for months I need IV Rocephin. My ins will pay for only 28days.
He said if you are self pay and go through Infuserve you can do it for about $400 a month. I have gotten a little info from them and when I find out more about dosage etc. I will call them.
Posts: 847 | From upstateNY | Registered: Dec 2007
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My daughter was treated with Doxy and Zith for 2 months with slow improvement. Then LLMD ordered IV Rocephin and she has been on that for 3 months along with Zith and Rifampin.
She is basically symptom free and I am thrilled our LLMD treated her aggressively and went right to IV when he saw she was only having slow baby steps to improvement.
She was sick for 7 weeks when LLMD dx her 1/09. Insurance paid for 28 days and now I am in self pay. I will fight this when all my ducks in a row and paperwork has been completed. Right now I am mixing it myself which saves me about $200 a week. But its still expensive but worth it for us.
Good luck...
Deb G
Posts: 499 | From Malta, NY | Registered: Dec 2008
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I was on IV rocephin for 5 months for severe neuro problems. My symptoms started to clear after 3 months, though not well enough for my doc to take me off for another couple. Since then I have continued my orals and have remained relatively stable.
Mixing it myself, having a friend change my dressings, and pleading with my pharmacist for a better deal (god bless them!) made the whole lot much cheaper.
good luck!
E
Posts: 36 | From Corvallis, OR | Registered: Jul 2008
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She has documentation every week when she comes out to access my port , showing continued issues, improvements, pain, etc. her notes go to ins. co and help justify ongoing tx. 
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