OMG, this fever....

[jeannea]

Can you get some Zofran too? Ask for the ODT. Keep pushing for that specialist.

[cariad]

Thanks for the suggestions, Aleta and Jeannea. I have been on doxycycline for about 2 weeks now and it is only just starting to be tolerable, I think switching to having it with food as suggested has made a considerable difference. Normally mornings are the worst with dizzy spells and feeling sick, which gives way to a low-grade headache that only responds to Ibuprofen, which I don't like to take too much of. This morning I felt well enough to get up and make the tea and coffee plus the lunches for everyone, and do my portion of the school drop off, so that was a good start to the day, and here it is early evening and still no headache. I need to email my surgeon in Chicago and ask if he thinks I can come off this drug anytime soon. I am terrible at remembering to take drugs, and years off them has not helped me improve.

Does anyone know if you can have alcohol with doxycycline? I do so love a glass or two of red wine with dinner. I've already had a small glass on several separate nights while on doxy, and one large one when my husband surprised me with a dinner out, no kids. It says in the patient leaflet in large print to not have alcohol with the drug, but then I've read that most antibiotics can be mixed with moderate alcohol with no problems. According to the old story, the blanket 'no alcohol' rule comes from World War II when soldiers would take antibiotic for venereal disease. By telling them it was dangerous to have alcohol with the antibiotics, they were trying to prevent them from getting soused and spreading the disease, or contracting fresh trouble. Does this sound like a just so story?

[MooseMom]

Cariad, I can give only anecdotal evidence:

I don't usually need antibiotics, but when I do, I always take them with food. (But I'm still not the most interesting girl in the world.   )  It does make an enormous difference in fending off nausea.

As for alcohol and antibiotics, I vividly remember an instance decades ago when I was told by my then-prescribing physician not to drink alcohol with an antibiotic I'd just been given.  I didn't think much of it, and that afternoon I had lunch with a business colleague.  He had ordered a dark ale, and I had a sip.  ONE SIP.  By the time I got back to the office, I was entirely lucid but could not keep my head upright because the room was spinning and lurching.  I think I had to be driven home.  You might be able to tolerate alcohol while taking antibiotics, but I most certainly cannot.  Since you've had no problems, I'm not sure why you should stop enjoying your wine with dinner!

[cariad]

Since you've had no problems, I'm not sure why you should stop enjoying your wine with dinner!

Well, I went without any wine for a few nights, then had a desperately needed glass Sunday night. We have these perfect glasses from a wine tasting we attended, if you fill it to near the top it is still only 175ml, or what a restaurant will serve you if you ask for their smaller pour. I had one of these, near the top, and woke next morning with a headache that I just knew was the wine. Had nothing last night and feel pretty great this morning, so I am giving up alcohol while on this med. It will certainly give me incentive to follow up with doctors and get off it as soon as recommended. I'll probably double my hot tea intake as that is the only other drink that truly relaxes me.
 
Thanks for your input. I'm off for a cry now. 

[MooseMom]

Oh, I'm sorry to hear this!  For how long do you think you'll be on this particular med?

[cariad]

 So worn down. I'm sick again, and Gwyn is struggling, too. Vomited violently yesterday for about 4 hours. The only other symptom I had was the dizzy spells which they are calling vertigo. I have an intense headache over my right eye at the moment and ibuprofen doesn't seem to have touched it. Unable to take antibiotic yesterday and nausea today has brought me to the conclusion that I should skip it tonight. My stomach and chest muscles are sore from all the upchucking. If this is the meningitis coming back then I give up.

 

[willowtreewren]

Cariad,

Ask about cyproheptadine. I am lost without it.

I have not had a drop of alcohol for over a year now. Oh how I long for a margarita, but getting well is far more important to me than the short pleasure of drinking alcohol.

I wish you could catch a break! 

Aleta

[jeannea]

How is your BP? When I have vomiting episodes with headaches, I often check and have pretty high BP and need an extra clonidine. That may be tough depending on what BP meds you have or don't have. Do you have a fever? Check that often. Can you keep anything down yet? If you can't keep anything down for days or get a bad fever, pls call your doctor.

[cariad]

How is your BP? When I have vomiting episodes with headaches, I often check and have pretty high BP and need an extra clonidine. That may be tough depending on what BP meds you have or don't have. Do you have a fever? Check that often. Can you keep anything down yet? If you can't keep anything down for days or get a bad fever, pls call your doctor.

Embarrassingly, I don't have my own BP monitor. I used to, perhaps I gave it away during the big move overseas, or perhaps it's in our endless supply of boxes. Blood pressure is an interesting measure that I didn't think of - the vertigo makes it feel like I may actually have low blood pressure. No fever, that I have been checking. I started up the doxycycline last night after skipping two days due to being unable to keep anything down. That may be why I feel so wrecked this morning, although I was able to eat last night. I am supposed to call the GP and try to make an afternoon appointment with him, but I don't even want to leave the bed. I need to email my surgeon in Chicago, too. (I know, I keep saying I will....) I am going to see if we can just blank the doxycycline. Thanks for the suggestions and concern, Jeannea.

Ask about cyproheptadine. I am lost without it.

I will, thanks!

I have not had a drop of alcohol for over a year now. Oh how I long for a margarita, but getting well is far more important to me than the short pleasure of drinking alcohol.

Wow, a year! You're right though, if I had to give up alcohol forever but it meant never going through this madness again, well who wouldn't be happy to make that trade off? Hopefully we'll both be able to enjoy the occasional libation soon.

I wish you could catch a break! 

And you, Aleta! You've been fighting far too long.... Thanks for supporting me through this battle!

[willowtreewren]

My Lyme doctor switched me to penicillin (in addition to doxycycline and tindamax) at my last visit. Oiy! 3000mg of penicillin a day really does a number on my gut. I pretty much have to nibble my way through the day. If my stomach gets empty, I'm in for some real pain! I take probiotics and eat yogurt at lunch when I'm not taking any antibiotics to keep the gut flora happy.

If you continue to have the headaches, do press for cyproheptadine. I have no side effects from it and it keeps my head pain at a hardly noticeable level.

You may not know that Carl was in the hospital all last week on a heparin drip as a cautionary measure to keep a blood clot from going from an aneurism in an artery in his arm into his hand, causing him to lose the hand. He had the artery replaced on Friday, leaving an 8 inch incision to heal. We are tough old birds, though. 

Get yourself better, dear Cariad.

Aleta

[cariad]

My Lyme doctor switched me to penicillin (in addition to doxycycline and tindamax) at my last visit. Oiy! 3000mg of penicillin a day really does a number on my gut. I pretty much have to nibble my way through the day. If my stomach gets empty, I'm in for some real pain! I take probiotics and eat yogurt at lunch when I'm not taking any antibiotics to keep the gut flora happy.

That is quite a course you're on! Probiotics are fantastic. Gwyn just bought a load of Rachel's Youghurt, which just happens to be a Welsh brand. Soooo expensive in the US!

If you continue to have the headaches, do press for cyproheptadine. I have no side effects from it and it keeps my head pain at a hardly noticeable level.

That's superb news! Definitely a drug I will remember if/when needed.

You may not know that Carl was in the hospital all last week on a heparin drip as a cautionary measure to keep a blood clot from going from an aneurism in an artery in his arm into his hand, causing him to lose the hand. He had the artery replaced on Friday, leaving an 8 inch incision to heal. We are tough old birds, though. 

I was telling the woman at the veg stand at our weekly market about how 2014 was shaping up for us (poor thing did open the door by asking!) and she said that at least things will have to get better for us because our start was just so catastrophic. Hopefully there's truth in that for you both, too. It's got as bad as it can get, so now things will begin to improve. I don't know about the 'old' (you two don't act it!) but you don't have to tell me about the tough. Nothing like struggling to keep pace with a newly transplanted friend to impress upon a person just how rugged you both are. 

[cariad]

Most. Pointless. GP. Visit. EVER.

Apparently, since I made this appointment on an urgent basis, they just put me with whomever had availability, which was not my usual GP.

He said I had to stay on the doxycycline, that it was not a drug that gave people any real problems, but I could take a few days off to let this stomach virus clear if I wanted. My blood pressure was 100 over some mumbled number. Everything else was just sort of "I don't know, ask your GP." I said I was only there because NHSDirect told me to see someone urgently and he said "They always say that." Oh.

I am so lucky to have a surgeon in Chicago looking out for me. I finally got an email out and he emailed me back within an hour saying "sounds like the doxycycline doesn't agree with you". Yes, thank you, appropriate response! He contacted the infectious disease specialists there and given that I've had problems with penicillin and zithromax, the following suggestion was made:

"I would specifically ask if she has ever taken a cephalosporin - if so, keflex 500mg once a day is one option; alternatively levofloxacin 500mg QD or moxifloxacin 400mg QD would be a good alternative."

Oh, man! These sound like biological weapons. The surgeon favours levofloxacin, but I have a feeling I will go to the NHS with this list and they will say "Are you a soldier in a current war...? Then no dice, sister!" We'll see. I think first I'll take that break from antibiotics that the GP mentioned. 

[willowtreewren]

Geeze! 

I hope the yoghurt does some good for you!

There are several "families" of antibiotics and surely you will be able to find one that works without working you over. 

Aleta

[jeannea]

I don't know what your trouble with penicillin was. As a reminder there is a 10% crossover of penicillin and cephalosporin allergies. I am allergic to penicillin from childhood. I tried a cephalosporin as an adult. Awful hives and large swelling of the joints. I itched and hurt.

[obsidianom]

In 25 years of practice I have never seen a crossover cephalosporin allergy with penicillin. Yes it can happen but it is very rare. Cephalosporins are about the safest and easiest to tolerate of all the broad spectrum antibiotics. I use Keflex (cephalexin) a lot in practice.  Levoquin and the other quinolones like it are more risky and have more potential for issues like tendon problems and are effected a lot by kidney disease.

[noahvale]

^

[obsidianom]

  Levoquin and the other quinolones like it are more risky and have more potential for issues like tendon problems and are effected a lot by kidney disease.

I took levaquin and after just one dose began having soreness in my Achilles heel tendons.  Was really irked at my dialysis neph for prescribing, especially since it is a "Black box" warning antibiotic (she said I was her first patient exhibiting this side effect).  Fortunately, I never experienced the more serious tendon problems like rupturing.

I was one of the first doctors to see this problem in the achilles back about 15 years ago. I researched it and helped patients with a class action lawsuit at the time. I have seen many cases of this . The drugs (cipro and levaquin) cause damage to the cells of the tendons causing cell death and holes in the micro archtitecture of the tendons. This can lead to ruptures in some cases. They are difficult to treat. We eneded up having to purchase a cold laser for the office to treat these as it is one of the better treatments for this condition.
I only use these antibiotics when I  have no other choices.   Keflex is far safer and most people can tolerate it well.

[cariad]

I mentioned the Levaquin black box warning to my nephrologist in Long Beach back when I believe the news was first coming out (2007/2008). He looked concerned but said he had never seen this himself. I took Levaquin after transplant because I had pleaded my way into this trial and my surgeon had got a protocol deviation from the FDA just for me, so I didn't feel I had very solid ground to be a further nuisance by demanding different drugs as well. It does make me horribly nauseous, though, so I use that more than the black box warning which does not exactly seem to have revolutionized antibiotic prescribing in the US.

When I was being discharged from the hospital here, I said I didn't want to take Levaquin because of the black box warning. They had no idea what Levaquin was, so I said it goes by another name, I think it begins with a c.... OK, they call it cipro. I said it could cause ruptured tendons and his response was "that's pretty rare...." Lovely doctor, too, I just think he felt the walls closing in on him as here was this person who underwent some operation or other that just complicated everything, and was supposedly allergic to two different classes of antibiotic, and now was refusing to take a third. I don't even know if they do black box warnings over here. It's refreshing to hear that I'm not the only one who finds this a colossal risk that is only worth taking under the most dire of circumstances.

[cariad]

I don't know what your trouble with penicillin was. As a reminder there is a 10% crossover of penicillin and cephalosporin allergies. I am allergic to penicillin from childhood. I tried a cephalosporin as an adult. Awful hives and large swelling of the joints. I itched and hurt.

Oh, sounds miserable! This is the kind of thing I would probably get.

Whether or not I am actually allergic to pen and zithromax is debatable. It's not a true allergy in the sense that my lips do not turn blue within moments of taking it. It is, however, a fast-acting rash that my surgeon has finally said once and for all "I would avoid it if you've had past problems with it." Not being a true allergy, they gave it to me intravenously to combat the bacterial meningitis and decided they would just treat the rash. (Well done Gwyn for explaining this so well that they knew the way forward.) And guess what, no rash. There did seem to be a small rash developing near one of the IV sites, but that was over a week in to treatment. Strange. I blame the clinical trial. I react so differently to everything now, my life has been split into pre and post-transplant halves. My last reaction to penicillin was pre-transplant.

Come to think of it, Gwyn is allergic to penicillin as well, so it really doesn't make sense that I would react differently to pen post-transplant. (He donated his immune system with his kidney, and at least one other participant in the trial developed a Bactrim allergy after receiving stem cells/kidney from a donor who had a sulfa drug allergy.)

Thanks for the warning, Jeannea. I will be on alert if they prescribe the new drug to me.

[obsidianom]

Cipro and levaquin are not the same drugs. They are in the same family but are different. Levaquin is once a day dosing and cipro is twice a day usually. Also they have a slightly different bacterial sensitivity. Levaquin is more broad spectrum while cipro is stronger against gram negative bacteria like e-coli. That is why cipro is often used for UTIs as most UTis are e-coli.

[MooseMom]

Cariad, how are you feeling today?  Are things getting any better at all?

[Iona]

 Just the question I've tuned in to ask..
 I've been away a little while and was shocked to hear what you've been through - thank goodness you saw  a doctor all those weeks ago. You've really been through the mill but I love your sense of humour!

" I've been putting Gwyn through the occasional random word game. The last one was after I had a vision/memory of a dead bird that had flown into the window at my parents house. Very common bird in Santa Barbara, CA so I said to Gwyn "What is that bird that runs around in little packs.... It begins with an S?.... You know, they're everywhere in Southern California.... They can fly but if you chase them their first instinct is to run.... You've eaten one, if you've ever been to Santa Barbara, you've paid $8 for two bites of one on a pile of lettuce.... Quail! Sorry, doesn't begin with an S...."
(Sorry, I can't get to grips with that highlighting option though I know it'll be something simple!)

You did make me laugh! Only last night I took my partner on a long and winding track down the wrong path. .again.
Also very glad to hear you are coming to Cambridge- in the UK? If so, and you fancy a meal with a complete stranger, message me. I'd like to offer a fellow IHD-er and amazing family a meal. Sounds like you all need a good break. Hope you have a splendid time here. We live in the centre of town so easy to find.

By the way I'm on Keflex everyday - no problems.
Would really like to know how you're getting on...

[Sugarlump]

Hello Iona Do you live in central Cambridge??? 

[Iona]

 Hello Sugarlump...yes I do.. Cambridge UK. Are you in Cambridge? Visiting Cambridge?

[cariad]

Wow, once again overwhelmed with the concern and support shown here. Thanks all of you!

I don't have a load of time this morning so forgive me if I seem short with everyone, but I wanted to know if this sounds familiar to anyone:

I have been struggling with a total lack of energy. I walked to the  hospital and back (maybe just over a mile) on Tuesday and needed days to recover. I don't really eat anymore, not like I used to anyhow. I used to eat quite a lot, in my opinion, perhaps too much even. I don't know, really, since my views of food were screwed up so long ago thanks to my post-transplant experience.

Yesterday was a typical day post-meningitis. I had a muffin in the morning and felt nauseous straight after, then a cereal bar right before I went to volunteer at the charity shop. Charity shop manager who also likes to experiment in the kitchen made cranberry almond cake, so I had a slice of that to be polite (not that it wasn't lovely, it was) and again felt nauseous. My husband made pasta for dinner, I hadn't really thought about food all day (which is not like me) had a few bites of the pasta, felt too sick to continue and stopped. I don't drink anything with calories, so while the GP said to drink Lucozade I truly do not see that happening. I was trained early in life not to "waste" calories on drinks, so it's just not in me to do this. (And I hate the taste!)

In summary: no longer feel hungry, when I do eat I cannot tolerate much food. I tend to want simple carbs now, where I had little taste for them before the illness. Could this be why I feel so exhausted all the time? What is going on and how do I fix it? I feel like I cannot go out to restaurants anymore because I won't want to eat and if I try I'll feel sick and need to lie down. Thanks for any tips or thoughts!

Iona, you are so sweet. Thank you for your message, you really lifted my spirits! Please read this thread http://ihatedialysis.com/forum/index.php?topic=29113.0
and then JOIN US!!! We have people flying in from Australia and America, so I don't think we'll be able to accept any excuses from someone who lives in Cambridge! I live in the Midlands, and we are still making arrangements, but we intend to be there for some or all of the festivities! Hope to meet you soon!