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Lyme Disease Message Board


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[QUOTE=gwynne81;2982488]I am a 25 year old female, and I was diagnosed with Lymes a year ago last month. It is believed that I've had it for about three to four years before I was diagnosed. I've been through eight months of oral antibiotics, with many cocktails and lowering or raising the dosage, with bad to no result. I have had a PICC Line put in three months. Then I went through three different types of IV antibiotics ending up with chest pains, shortness of breath, ER visit, in other words allergic reactions. Now I'm currently on Ampicillin three times a day and Flagyl once a day. It's been one month of these two and insurance is cutting me off on the 17 of this month, May. After all of this I feel no better! I think that my doc is very knowledgeable, but at this point I think that I am out of his league. I have been out of work for the past year, I'm filing for disability and I'm a single mother of two. Please if anyone has any information, advice, etc please help me get my life back!!!!!![/QUOTE]

Gwenn, Hi , sorry that you are feeling so bad, and dealing with so much. Is your INS cutting you off completely, no coverage at all, or just the meds? If it's just the med's is it the Rocephin, meaning if your LLMD switches med's will they be covered? My INS will only pay for 14 days of Biaxin XL, but will pay for regular Generic Biaxin for as long as I need it. I wouldn't reccommend the Amp. (but I am not a doc, just research alot. If it is possible to stay on med's ask your LLMD about Biaxin, Have you been on it? Combined minocycline and Plaquenil or Flagyl. I don't know what other combo's you have tried. But my son had LD for 6 years before getting diag. And this combo (plaq. not flagyl) has helped him so much. He is back in school 3-4 days a week 3/4th days, and has started going outside and playing again, he isn't having the tremors anymore, and his fatigue has let up significantly. I took him off for one month after 6 months straight and he didn't relapse, he is now back on for 6 months, then switch the plaq. to flagyl for 3 months and his LLMD says he should be good to go and off med's. I had LD for 8 years before diag. I am taking same combo as son, I am noticing improvement now. But after 4 months I couldn't afford to treat my son and myself so I had to stop taking ABX's for 2 months, have been back on them for almost 2 weeks. I felt really bad that 2 months I was off. But have been feeling better taking Wobenzym N. Have you been tested for Co-infections? Also have thyroid and adrenals tested. I have AI that is secondary (caused by the LD) and I wasn't having this treated and I think that is why I wasn't getting better like my son was, now am being treated for AI and LD, and I am feeling quite a bit better, I am getting up in the morning without an alarm. Which hasn't happened in years, and I don't go back to sleep, I am not napping during the day. I will lie on the couch for 10-15 min. I really feel like we are both on our way to a complete recovery. They only thing we are still dealing with severely is the neck pain and fatigue, and I have shoulder and arm pain, but it has let up some the last week. I am really wondering if the palquenil is a major factor in our feeling better because 6 years ago my rheumi insisted that I would come up pos. for Lupus some day, and put me on just Plaq. which is also used for Lupus. And after a year of being on just the plaq. I went into remission for 2 years. I didn't feel completely healthy but was working and coaching soccer all I really had was the neck pain and it wasn't really bad. Then I relapsed. But I know it was the plaq. that put me in remission. And I do not have Lupus, still neg. 9 years after first testing. I am tested every 6 months. If you have tried everything else with no results but haven't tried this combo, it is worth a try. Good luck with your Disability. I was turned down 3 times and finally just gave up. Now I don't have enough credits to apply. Get a good attorney, and make sure you have the complete backing of your doc. And that they send all your med rcords in. Keep in touch and let us know how you are doing, this board is a blessing, and is alot of help, we are here for you, Sincerely, Sarah:wave:





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