Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Right now my dr and insurance are fighting. Tricare is only approving 28 days of IV meds for me. Would that even be long enough to get a good treatment started for me?? I feel so discouraged! I have put it in Gods hands though-he decides, and I quit fighting.
As for my stomach. Saw the GI dr yesterday. Went the way I suspected. I actually told him that I though the prilosec was making things worse and that I thought I was having acid rebound because of it. He said nothing, nothing. I told him I was getting off of it. He said if that will help, then by all means do it but do it slowly.
What a big help he was!! Anyone here had to come off of PPI's slowly?? My tummy is still burning.
Im waiting for my theralac to come too. Will that help with some of the burning pain??
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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posted
Nal, and all~ My husband and a dear young friend of mine, BOTH on IV rocephin are having ABD pain- under the bottom of the sternum, kind of a hollow pit like pain/ache. The docs seem to have no answers. Gallbladder? stomach?? inflammation somewhere? Any ideas? it is so frustrating, and it is awful for them. Anyone else have ideas? SOMETIMES the acidophilus seems to help Mike, sometimes eating seems to help, other times, they seem to make it worse. His zantac doesn't affect it much, and he isn't on a PPI now. A LLMD told my friend to take ibuprofen... will that make it WORSE? the doc told them chostochondritis????? Thanks for your thoughts on this.
Posts: 6 | From Minnesota | Registered: Nov 2005
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posted
When I had been on Rocephin in my 3rd month I went ot the ER with the same pain they told me it was chostochondritis...2 days later I was back in the ER and admitted to have my gallbladder removed...
My gallbladder pain was on the right side under my rib cage and radiated to my chest and shoulder...It was a very uncomfortable full feeling and achy pain with stomach distentsion...if on rocephin I would definatelty consider gallbladder...Jill
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Getting back to my question. Would 28 days be sufficient or should I not even bother?
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Nal~ IMO 28 days is better than none. However, read my post in general support about insurance denials. I posted my letter there to my insurance company. They paid, and kept paying...all 6 1/2 months worth of my IV.
Insurance companies are not allowed to dictate your care. That is your doctor's job.
Good luck
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Nal~ I don't think that 28 days is sufficient. There is evidence that IV Rocephin can cause relapse, especially if not used long enough.
I had 56 days in 2001. It helped a lot but I needed to fight to get the second 28 days and I think they made a BIG difference in how long I went without meds afterwards and without symptoms. (almost 4 years)
As Timaca said, you CAN fight them. There is more and more literature about this issue in our favor all the time. Much more than there was in 2001.
I am not familiar with Tricare. Sometimes "smaller" insurance co's are BETTER at approving longer IV treatment. Also if you are in an area where not much is known about Lyme, then usually the Insurance co just shrugs and says...um...okay., AFTER you fight your head off with them for a few weeks.
That is my experience in New Mexico with Cigna. BCBS is another matter and California is even another matter. (where I live now )
IV will affect the gut but not in the same way as oral ABX.
IMO--I would start getting ready for the 28 days, and also begin an appeal BEFORE you even have your line put in and then after you are on the stuff, start fighting HARD. Sometimes it is BETTER to be currently in the middle of the treatment and then they rush the appeals and med neccessity stuff thru.
Hope this helps. Sorry to see you are still suffering in the tummy! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
How about trying the PPI'S every other dayfor a while. and then work up to every two days?
The only over the counter stuff I tryed for my stomach problems that works for me is exrta strenth gaviscon.I take it then don't eat or drink for a while while it coats my stomach. I do try not to take to often.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I originally had 4.5 weeks of IV. It made a tremendous difference and I WAS ALMOST back to normal after about 4 months after finishing the 4.5 weeks and going on orals.
That being said, i did relapse, but from what I could infer from my Lyme expert doctor, There lapse probability is on a case by case basis. In either case once you stop the IV It appears to be common practice with those that treat lyme regularly that you would then be put on orals until the symptoms subside. Orals did not stop the relapse for me but they did result in increased improvement until I started to slide backwards.
If you have objective signs of relapse, re-treatment is warranted under the CDC guidelines so I doubt that your insurance could argue/deny that. The only thing is that you do not want to relapse too far backwards as getting out of the hole the second (or third or fourth) time is harder than the time before (at least from what i have seen).
So as far as is 4 weeks good enough, maybe it is- maybe it is not. In ether case it WILL help A LOT. This documented improvement combined with your other symtoms can be taken as a proof of Lyme infection and at that point you would fall under the CDC guidelines (the COMPLETE guidelines including the relapse proviso) in no uncertain terms. So, I suggest go with it to start even of they don't allow more than 4 weeks and if there is any sign of a relapse in the months to follow after that DEMAND retreatment from the insurance company as it is clearly and unequivovally stated by the CDC that relapses DO occur and "re-treatment may be nessacary".
Good luck
Posts: 1184 | From north america | Registered: Feb 2003
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posted
The 28 days of rocephen might help, but I think you'll probably relapse after awhile. That is what happened to me. My dr. treated me with the iv for about a month and my symptoms all came back. This was several years ago. I had to do the iv again for another month. I went for about 4 years until I got severely depressed, which was the lyme coming back. I've now been on iv rocephen since April. My LD said they now know that it takes a long treatment time for it to work. I would try to fight the insurance company. Good luck to you.
-------------------- "I can see clearly now" Posts: 22 | From midwest | Registered: Dec 2005
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posted
every case is different,if your a bad neuro case i doubt 28 days will do anything.Ive been on it for three months and Im having some Ok days here and there but I havent had the big turn around yet.I was having right upper stomache problems for a couple of weeks ,thought it was the gallbladder but the ultrasound was clean,I now notice it when i eat certain food like to much fiber.Just for your info the generic rocephin is just under 400$ a week but supplies are another 400$.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
If you don't come off the prilosec slowly you will REALLY rebound. I need to get off of it myself, but haven't had much luck. The GERD sneaks up on me and then I'm in trouble again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Thanks guys. Once my primary care dr gets back into town next week,we'll try and get this all worked out. Im putting God in control. I don't want to stress about it because if I do that willl only make things worse for me.
I am definately coming off the prilosec slowly-very slowly. I started the Theralac today too. Time will tell right?
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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posted
Hubby and 2 friends have been on prescription Aciphex for 2 years. Someone told them to take one teaspoon of apple cider vinegar a day. That was 3 months ago. After 2 days they all needed no more meds, as well as blood sugar and cholesterol came down within 3 weeks.
Alot cheaper, and more beneficial! (This is just a suggestion, I'm not in the health care field!) Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Yep, Apple cidar vinegar does help. They say that if you take a teaspoon of that and do not get an increase in heartburn, then that means your stomach is not producing enough hydrochloric acid.
Anyone have good luck with Aloe Vera juice on heartburn as well?
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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