Aa
Allergic to Minocycline - Now what do I do?
I am now nursing a nasty rash and spent the entire day in doctor's offices scared to death. At one point, I felt something wrong with my throat, as if it were swelling too, or closing off. It really scared me. Now I'm loaded up with Benadryl and look like a leper.
I am so disappointed. All I wanted was to take my little abx and get better, and I am allergic to the very thing that can help me. I feel a little hopeless, but I know it is just a bad day:(
Has anyone had this problem and switched to another antibiotic successfully? I've never been allergic to anything. To beat it all, my acne is worse than before the minocycline! It's supposed to help. I not only feel aweful, I look aweful.
My doc wants me to get my hives under control before we consider the next treatment. I don't have an appt. again until July though! What am I supposed to do? I need more reassurance, more contact from my MD so that I know he is trying everything he can. I guess I'll have to wait until I see the LLMD in Sept. to get "real" treatment. I hate to say that, because he has stepped up to the plate pretty well.
I am so disappointed. All I wanted was to take my little abx and get better, and I am allergic to the very thing that can help me. I feel a little hopeless, but I know it is just a bad day:(
Has anyone had this problem and switched to another antibiotic successfully? I've never been allergic to anything. To beat it all, my acne is worse than before the minocycline! It's supposed to help. I not only feel aweful, I look aweful.
My doc wants me to get my hives under control before we consider the next treatment. I don't have an appt. again until July though! What am I supposed to do? I need more reassurance, more contact from my MD so that I know he is trying everything he can. I guess I'll have to wait until I see the LLMD in Sept. to get "real" treatment. I hate to say that, because he has stepped up to the plate pretty well.
Good for you, you're doing all the right things. Not like you don't have enough to deal with being sick and having a medication reactions, you get to battle the Bureaucratic Blizzard. Hang in there.
I agree with pushing on all fronts. I have an appt. with an LLMD, but it's not until Sept. I am willing to wait though. I haven't stopped breaking out in a rash from the minocycline yet. Every evening, I'll have a little outbreak of hives! I don't know why he is putting me off. I know my coinfection testing is back and just collecting dust. Maybe I'll call tomorrow. They get so PO'd when you call and ask! It's ridiculous. I don't have time for people to be jerks when it comes to my health. Friends who don't believe in Lyme are saying, "I told you so, the treatment is worse than the disease." ARGH!
I'm with you on no steroids, but they've never been offered to me. Wonko has experience with them, I believe.
May I strongly suggest: Rather than wait for June 23 to the dr and then decide whether to make an appointment with an LLMD, make the LLMD appointment NOW. They often have a wait list, and there is no law against making overlapping appointments. You can even cancel and they most likely won't charge for the cancellation -- it happens to them all the time. Usually they tell you they will charge for a cancellation within x days of the appointment.
Don't wait. Push ahead on all fronts simultaneously. And I never told any doctor I was seeing other doctors, only if I was on some medication, which I wasn't, since nobody knew what was wrong with me.
And get copies of ALL your test results to take with you. I've become a freakin' file clerk tracking all the paperwork, broken down by doctor and year, in date order, and keeping a detailed daily symptoms and medication log, and a short summary of significant events to show the dr. Aggh. (And hey, nobody get too excited about electronic medical records: they will be just as hard to deal with for entirely different reasons.)
Pick up the phone! Now!! Let us know how it goes.
May I strongly suggest: Rather than wait for June 23 to the dr and then decide whether to make an appointment with an LLMD, make the LLMD appointment NOW. They often have a wait list, and there is no law against making overlapping appointments. You can even cancel and they most likely won't charge for the cancellation -- it happens to them all the time. Usually they tell you they will charge for a cancellation within x days of the appointment.
Don't wait. Push ahead on all fronts simultaneously. And I never told any doctor I was seeing other doctors, only if I was on some medication, which I wasn't, since nobody knew what was wrong with me.
And get copies of ALL your test results to take with you. I've become a freakin' file clerk tracking all the paperwork, broken down by doctor and year, in date order, and keeping a detailed daily symptoms and medication log, and a short summary of significant events to show the dr. Aggh. (And hey, nobody get too excited about electronic medical records: they will be just as hard to deal with for entirely different reasons.)
Pick up the phone! Now!! Let us know how it goes.
I don't get why your doctor didn't change the antibiotic to something else. This is delaying your treatment several more weeks. Could you call and insist on it?
Thanks all for the responses. I am currently attempting to get another antibiotic. I say "attempting" because my doc is in NO hurry to reschedule me to start another and it's starting to get annoying. I wasn't scheduled until July, so I called in and asked if I could get in earlier, since the rash is gone and the throat issue is gone. They said they could get me in June 23rd. I took it. Why is he making me wait so long between appts?!!! I think he is not sure about my case for some reason. I mean, I have a positive ELISA, CDC positive IgM Igenex Western Blot and one lesion on MRI. What else do you need? I guess he will start me on something else on June 23rd. This is why I am going to see an LLMD in Sept. if this keeps up. I'm not waiting anymore. Sorry. Also, my coinfections labwork should be done by now and nobody has called to let me know they are in and they will not call me when they do - just like with the Igenex. They act like I'm being impatient. They would want answers ASAP too, if they were sick like me for the last three years!
Also, on the steroids, - I would NOT take them. They allow the bug to run rampant. I got that one steroid shot and regretted it - and then I trashed the pills. A Lyme friend of mine took them and got terribly worse. That's why I toughed out the rash with Benadryl. Just think twice and ask your LLMD if you have one.
Also, on the steroids, - I would NOT take them. They allow the bug to run rampant. I got that one steroid shot and regretted it - and then I trashed the pills. A Lyme friend of mine took them and got terribly worse. That's why I toughed out the rash with Benadryl. Just think twice and ask your LLMD if you have one.
Well you are not alone now. I was taking zithromax and made it through 10 days before I started itching all over and started developing a rash. Due to past allergic reactions from other anitibiotics I didn't waste any time getting treatment. I stopped taking the med on Sunday and saw my Dr. yesterday who also agreed I needed to stop the zith and had me go to the ER. AT the ER they gave ma an injection of Decadron (a steriod) and want me to continue on steriods and Atarax.
They are concerned though because they know what Anaplasmosis is and steriods are not a good thing but they are worried that because zith has such a long life in the system that I would need the extra steriods. I also checked with me Dr. who agrees with them saying I need to be on the steriods and the fact that the zith should still be in my system for another 10 days since stopping it. He is also interested in seeing if the steriods help with my a couple of my other issues he feels are being caused by inflamation.
He plans to re-check my blood in a couple of weeks so only time will tell how things will work out. I am wondering if this means I can no longer take Zithromax anymore. If that is the case my choices of antibiotics is now very small. Dava
They are concerned though because they know what Anaplasmosis is and steriods are not a good thing but they are worried that because zith has such a long life in the system that I would need the extra steriods. I also checked with me Dr. who agrees with them saying I need to be on the steriods and the fact that the zith should still be in my system for another 10 days since stopping it. He is also interested in seeing if the steriods help with my a couple of my other issues he feels are being caused by inflamation.
He plans to re-check my blood in a couple of weeks so only time will tell how things will work out. I am wondering if this means I can no longer take Zithromax anymore. If that is the case my choices of antibiotics is now very small. Dava
I am pretty sure there is something stronger than Benedryl that you can take (probably by prescription) but the name escapes me -- it's what you get if you have a bad reaction to a bee sting, for example.
I was on azithromycin for several months, and it worked very well. A thought: a month's worth might not be enough to treat, so you might want to keep appealing with the insurance company just to keep the ball rolling in case you have to go for more than one month's meds. It's a mystery to me why even the generic zithromycin is so expensive.
I was on azithromycin for several months, and it worked very well. A thought: a month's worth might not be enough to treat, so you might want to keep appealing with the insurance company just to keep the ball rolling in case you have to go for more than one month's meds. It's a mystery to me why even the generic zithromycin is so expensive.
There are other meds you can take. Someone here recently posted about a similar reaction to doxy with the throat swelling, shortness of breath etc...I never took doxy until the past year. I had great improvement on other antibiotics.
Stacey; Yes it is the generic form of Zithromax (Azithromycin). I thought the cost was awful myself and that is probably why my insurance didn't want to pay for it. They wanted a cheaper drug, but like I said I am allergic to most. My Dr. even tried appealing their decision but they still wouldn't give in. They did say we could try for a 2nd appeal but we had already spent almost a month dealing with them so I just paid for it myself. I didn't do much checking around accept on the internet but a couple of pharmacies around me all charged the same.
My insurance kept looking at the normal dosage of Zithromax 500mg was a 3 day course not 30 days. They didn't consider that I am not treating a normal infection that requires a longer course of treatment. When I talked to them they didn't even know what the anaplasmosis was my Dr. stated as the diagnosis . They might have finally approved it on the 2nd appeal, but I just didn't want to waste any more time. Dava
My insurance kept looking at the normal dosage of Zithromax 500mg was a 3 day course not 30 days. They didn't consider that I am not treating a normal infection that requires a longer course of treatment. When I talked to them they didn't even know what the anaplasmosis was my Dr. stated as the diagnosis . They might have finally approved it on the 2nd appeal, but I just didn't want to waste any more time. Dava
I've actually had just as many herxing symptoms on the natural formulas as I've had with the antibiotics. My specialist told me to continue to do what I'm doing and so I am... with success !
I'm sorry all of this has happened to you! I would describe what you had as anaphylactic allergic reaction. If you are sure it wasn't the antiviral med you had just started and it WAS the minocycline. I wouldn't ever take another drug (like doxycycline) in that class again (tetracycline) and always list it as an allergy. In addition to the benadryl by mouth, you could apply hydrocortisone cream and use aveno baths to help with the rash. You might even consider getting an rx for an epipen, I'm pretty sure my LLMD gave me one.
The good news is that there are other classes of drug to treat lyme disease. Penicillins (amoxil, augmentin), cephalosporins (ceftin, omnicef), and macrolides (biaxin, zithromax)..there are others, these just come to mind.
I have just emerged from an adverse drug reaction that took me a while to get over and am now seriously considering herbal treatments that I am reading about in "Healing Lyme". I have already been through about 9 months of abx already, though. I think with this disease, we all have to find our way and I have been extremely surprised with my way of thinking now.
I guess that this is where an LLMD can come in handy, because they have treated MANY people with different kinds of abx and have that experience going for them.
Dava, that price for the zith sounds pretty expensive. Did you call around to get different quotes? You did get the generic, right? That was my favorite abx!! Maybe you are taking more than I was.
Stacey
The good news is that there are other classes of drug to treat lyme disease. Penicillins (amoxil, augmentin), cephalosporins (ceftin, omnicef), and macrolides (biaxin, zithromax)..there are others, these just come to mind.
I have just emerged from an adverse drug reaction that took me a while to get over and am now seriously considering herbal treatments that I am reading about in "Healing Lyme". I have already been through about 9 months of abx already, though. I think with this disease, we all have to find our way and I have been extremely surprised with my way of thinking now.
I guess that this is where an LLMD can come in handy, because they have treated MANY people with different kinds of abx and have that experience going for them.
Dava, that price for the zith sounds pretty expensive. Did you call around to get different quotes? You did get the generic, right? That was my favorite abx!! Maybe you are taking more than I was.
Stacey
I cannot take alot of anitibiotics as I am allergic to them, so my Dr. has me on Zithromax right now for 30 days. It wasn't his 1st choice but my options are very limited. I am on a low dose since my stomach doesn't tolerate the meds well either. He told me I would probably have to be on the Zith longer than I might be on another med, but only time will tell.
I just found this new Dr. last month. He is the 1st one that finally checked me for co-infections of Lyme and found I have HGE ( also known as Ehrlichiosis or Anaplasmosis) which shows as a past infection. Since 2002 I have been telling many other Drs. I have felt I had, Lyme but because that test always came back negative I never recieved any treatment and nobody ever checked for co-infections before now. I suspected Lyme as I had been bit 4 times before 2002 as I had the ticks attached, but because I never got the bullseye rash and always tested negative, I was never treated.
I have developed many symptoms and my health has gone downhill since that time but yet I couldn't get treatment due to "negative tests". At least this new Dr. did the extra testing. He has even told me he has no doubt that I also have Lyme even though the tests don't show it. He says it's not uncommon to have a negative test and still have Lyme.
Not only did I have to fight to get this diagnosis but then I have been fighting with my insurance company who would not cover the Zithromax, so finally I paid out of pocket ($435.00 for 30 days supply). I am only into my 8th day of taking the Zithromax so I am hoping I will be able to tolerate the 30 day course ( at minimum), and I will see some improvement. I am just worried that this has gone on for so long I might never fully recover.
Take care, Dava54
I just found this new Dr. last month. He is the 1st one that finally checked me for co-infections of Lyme and found I have HGE ( also known as Ehrlichiosis or Anaplasmosis) which shows as a past infection. Since 2002 I have been telling many other Drs. I have felt I had, Lyme but because that test always came back negative I never recieved any treatment and nobody ever checked for co-infections before now. I suspected Lyme as I had been bit 4 times before 2002 as I had the ticks attached, but because I never got the bullseye rash and always tested negative, I was never treated.
I have developed many symptoms and my health has gone downhill since that time but yet I couldn't get treatment due to "negative tests". At least this new Dr. did the extra testing. He has even told me he has no doubt that I also have Lyme even though the tests don't show it. He says it's not uncommon to have a negative test and still have Lyme.
Not only did I have to fight to get this diagnosis but then I have been fighting with my insurance company who would not cover the Zithromax, so finally I paid out of pocket ($435.00 for 30 days supply). I am only into my 8th day of taking the Zithromax so I am hoping I will be able to tolerate the 30 day course ( at minimum), and I will see some improvement. I am just worried that this has gone on for so long I might never fully recover.
Take care, Dava54
I had problems with my 'throat' on doxy. - felt like a lump - also a lot of 'mucus' [or something !] draining down the back of throat - my ears aren't as painful since though - am seeing LLMD. Monday - to discuss my symptoms whilst on doxy and see if he thinks I should start them again.
I know this is an embarassing topic !! - but also after taking doxy - I had a lot - and I mean a lot !! of 'white stuff ?' in bowel movement [ o.k. pooh !!!! ] - that's another ? for LLMD.
[atleast know one can see my blushes - no point discussing symptoms without the 'whole picture ! ]
take care
gorbs x
I know this is an embarassing topic !! - but also after taking doxy - I had a lot - and I mean a lot !! of 'white stuff ?' in bowel movement [ o.k. pooh !!!! ] - that's another ? for LLMD.
[atleast know one can see my blushes - no point discussing symptoms without the 'whole picture ! ]
take care
gorbs x
The formulas I am taking were so strong (but natural) that I literally had tachycardia symptoms two days last week ! Don't underestimate "alternative" (AKA: pre-western medicine). These Naturopathic physicians believed and started treating both lyme and CFS long before western medicine practitioners believed these conditions were real and knew how to treat them with prescription medications.
I'm finding out why Cher goes to Germany for her EBV/CFS treatments. Their homeopathic formulas (the UNDA and PLEO's) kick butt !
I do believe in alternative medicine, but right now, I am wanting to get a kickstart with abx and then perhaps supplement with alternative medicine. That's just my preference for now. I might be changing my mind if this is how conventional medicine is going to treat me!
There are a lot of natural remedies!
The upside of this is I've been looking into side effects of long-term antibiotic use that I've encountered since taking the massive doses that the LLMDs prefer and in combinations unheard of for any other disease of which I'm aware. And, there are side effects. Everyone is different and the side-effects may or may not occur for each person. Side effects from antibiotic use at these levels and for years are rarely mentioned ever because doctors generally weigh the risk with the benefit. (I am sure everyone will say that ABX has helped them and/or cured them here -- and I believe they have. I'm just saying there is a silver lining if you can find another way.)
So, this is indeed a mixed blessing. There could be acupuncture, herbal remedies, or some kind of combination to restore your health.
Wishing you well!
The upside of this is I've been looking into side effects of long-term antibiotic use that I've encountered since taking the massive doses that the LLMDs prefer and in combinations unheard of for any other disease of which I'm aware. And, there are side effects. Everyone is different and the side-effects may or may not occur for each person. Side effects from antibiotic use at these levels and for years are rarely mentioned ever because doctors generally weigh the risk with the benefit. (I am sure everyone will say that ABX has helped them and/or cured them here -- and I believe they have. I'm just saying there is a silver lining if you can find another way.)
So, this is indeed a mixed blessing. There could be acupuncture, herbal remedies, or some kind of combination to restore your health.
Wishing you well!
There are effective natural treatments for lyme disease. If you would like more information, let me know !
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
