posted
I hope this doesn't come off like I'm complaining, but I am feeling 100% worse all of a sudden, and I am scared I might have the flu. I have done a bunch of searches for Babs threads and they did help but I guess I'm looking for more personal support.
My old LLMD dumped me last month, and I don't see my new one until Friday. I know we're not doctors giving medical advice here, but some anecdotal expertise would REALLY help me out.
I am clinically dx with Babesia. I was initially on 500mg IV Zith q24, with 1 tsp. Mepron 2x/day. I couldn't tolerate Mepron (constant vomiting), so I switched to 900mg IV Clindamycin q12 /with quinine 1x/day this month.
Yesterday my temperature started climbing. My normal body temp is low, around 97.3, and it hit 99.7 degrees last night. I was in so much pain that I was crying, despite taking extra Morphine. It hurt for anything to touch me, even my pajamas.
This morning, things have not improved. I feel incredibly... for lack of a better word... sick. What I want to know is, does this sound like a normal Babs herx, or do I need to start popping Tamiflu (my immune system isn't so great so I have a "just in case" Rx).
Mepron made me very sick very quickly, but it was more vomiting than this fever/pain combo. It just hurts so, so much, I am trying to work through the pain but even with the Morphine I am beside myself. I have been in pain for so long, I'm just so tired of hurting.
Is there anything I should/should not do for this? My dad is not willing to pay for herbs or supplements, so I am looking for some temporary home remedies, I guess.
Thanks for taking the time to read this and respond; it took all the strength I had to write it.
Cat
PS: I can't tell if this made sense or not. I'm sorry, I'm having trouble thinking clearly through the pain. My whole story is posted in General Support under "New to LymeNet, 20 yr. Lymie" if you want more info. I just can't type more here right now.
Posts: 54 | From Virginia | Registered: Jan 2008
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tailz
Unregistered
posted
I wish I had advice for you. I have babesia, and I'm in pain, too. My insurance won't cover Malarone, and Mepron is almost as much as my rent, so I'm taking artemisinin and quinine. Only I restarted Cipro today, so there goes my quinine.
I don't think it's fair at all that we can't see a local doctor to treat this disease. I cancelled my appointment because I'm too ill to drive 2 hours each way and then sit there under fluorescent lights in the midst of cell phone users until after midnight when my appointment is an noon.
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posted
Thanks for the support, taliz. I agree, it really stinks that we have to depend on doctors who may not be close to home when we are so ill.
And those flourescent lights... ahhhh! At my old LLMD it was lights, screaming kids, and cell phones (family practice), plus a minimum 3.5 hours at the office just to see the LLMD for 10 mins.
I hear my new LLMD is much more cognizant of Lyme patient needs. In the meantime, if I need to go to the ER to get my pain under control, I've got my iPod and my shades ready (and really, I have to go to the ER an average of 2x/month so they know me-- I call ahead to reserve a room now )
No solution to the cost problems that I know of with Babs. We spent the money on Mepron only to find out that I can't keep it down, and now the quinine is wreaking havoc...
I hope we both feel much better ASAP! Posts: 54 | From Virginia | Registered: Jan 2008
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posted
I'm sorry, I don't know what to do. I think you need to call a doctor, whether it's your new LLMD or your old (who I presume prescribed the meds you're taking), I don't know.
Babs herxes did hurt quite a bit .... I certainly don't miss the pain.
Have you tried epsom salt baths? I found them quite helpful. But be careful standing up afterwards as you will most likely be dizzy ... plus, with the fever, you probably don't want the water too warm.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
hi Im sorry that you are in so much pain It does sound like a herx to me.If you take herbal remedies I would suggest taking a few pain related herbs and taking stuff to help detoxify from the toxins built up in your body
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Drug induced fevers???
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Thanks for all the responses, everyone, I really need the support today. I'd address them individually but I can hardly sit up.
I wish I could try some of the supplements you've all suggested, but I lost my job last year in July when I became bedridden. I had only just graduated from college six months before that, and had no money saved. I did not qualify for SSDI, etc, because I had not worked long enough.
I am not covered under my dad's insurance bc I am not currently a student. He pays for an individual policy for me, but I'm at the mercy of what he considers reasonable, and while I can get a box of epsom salt or baby aspirin pretty easily, he will not pay for herbs or supplements.
However, I appreciate ALL advice, so if you guys have more ideas please share.
I am going to try an epsom salt bath tonight when I'm not alone in the house (I do get dizzy, thanks for thinking about that and for the idea, 6gk!) and I'm going to take extra pain medication to see if it will knock me out.
Babesia is not fun. I want my mom!
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
I am so sorry to hear you are in pain. I don't have a special medicine for you but please know lots of people are here for you- on the good days and the bad. I am also dealing with Babs and understand the pain that accompanies it. Although it sounds like you are dealing with so much more that I can imagine. Please stay strong and let us know how the new LLMD appointment goes. We are here for you!
Posts: 183 | From Texas | Registered: Nov 2007
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posted
dbourne your message could not have been more timely. I just threw up my attempt at dinner and I am feeling dreadful. I'm really sorry you hear you have Babesia too... I hope you feel better soon!
Updates for everyone else... I tried to take a salt bath, but discovered when it was time to wash my hair that the hot water is broken, so not only did I get soaked in freezing water but I didn't even get to wash properly.
Then I tried to eat, but my caretaker/boyfriend is feeling sick too, so we ordered baked chicken tenders for me and some salad, but I threw it up. My fever is still around 100 degrees and my pain is through the roof even with a third dose of Morphine (I usually take one dose per day).
I just don't know what to do, but the support here has gotten me through the day. It's nice to have a family here that "gets it" especially when my own family is several hours away.
I really am grateful for words of encouragement. We all have bad days and worse days... I just don't remember the last time I had a good one anymore.
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
Really sorry you are having such a hard time. I can tell you what my doctor told me to do when I got hit with a killer babs herx. He told me to lower my dose for a few days and they go back up (it didn't work).... so he told me to stop taking it all together. He told me to take Alka Setzer Gold (no aspirin)... it helps to neutralize your stomach if you are having herx. Also he told me to take charcoal tablets to absorb the toxins in your system for a few days... after I stopped taking the medicine that is (drink lots of water if you do this). After a week off medicine (I did feel much better) he switched my medicine to malarone and bactrim for a few months. These are suppose to be less strong? or work in another way. They worked really well and helped lessen the babesia load without sending me to bed. Now I'm back on the high dose that made me so sick last time and doing fine with it. Epsom Salt baths with baking soda helped with the pain in my legs. Hope you feel better soon.
Posts: 45 | From MA | Registered: Sep 2007
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
The hubby has tried pretty much all the tx for babesia that are available.
The quinine/clinda appears to be the only one that worked -- so far, anyway. No babs sx for 5 months. We're keeping our fingers crossed.
But it's a miserable, miserable treatment to go through. My dad remembers taking quinine by itself in WWII and absolutely hated it.
Double check with your doc (my standard advice). I presume you're getting bloodwork done to make sure your kidneys and liver are handling this OK? Also go over the side effects, and what you're to do about them, very carefully.
It may just be that you're in for some bad months.
Beware of the tinnitus with quinine -- it's inevitable that you will have some, but back off if it gets too intense. You don't want permanent hearing loss.
The hubby was not able to take the quinine for more than 3 weeks at a time, because of the tinnitus. He'd quit for a week, the tinnitus would fade, then he'd start treatment again. Some protocols, I understand, do it Q/C for 10 days on and 10 days off to make it bearable.
At the beginning of the treatment he had tremendous sweats, soaking through his shirts or PJs 2-3 times a day/night.
For the first several months he had a lot of pain in his joints and muscles, increased headaches, weird dreams, severe fatigue, and fairly significant depression. His temp fluctuated in and out of a light fever.
Hubby did Q/C (3 doses of Q per day) for 5.5 months. There was no wonderful breakthrough during the treatment, except that the sweats stopped after the 3rd week. All symptoms lessened a little by the end of the 3rd month -- I think at least half of the misery was the meds themselves.
But -- how great it's been for him to not have babesia symptoms for the first time in 20 years! You don't realize how much it affects you mentally ,emotionally, and physically until you don't have it any more.
I found that very gentle massage really helped my muscle pain when I was getting treated for babs, especially in my legs (my thighs in particular hurt SO SO much, and my headache was agonizing). Dunno if dad will spring for it, but your doc will probably write you a prescription for it and insurance may kick in. Make sure the massage therapist understands the need for a light-but-effective touch. Most LLMDs feel very strongly that massage is extremely helpful for LD patients.
I also found that hot packs on my forehead, cheeks, and back of my head helped with the headache.
I agree that doing whatever you can to get rid of the toxins really helps, and the suggestions above are good. The hubby didn't do so well on cholestyramine, but he's found that adding fiber to his diet (like Beneful) helps a lot, and also helps ease off the diarrhea. If you take charcoal, make sure to do it 2 hours away from oral meds.
Clay baths might help, too, and are fairly cheap at the health food store.
Several people in our LD group absolutely swear by coffee enemas. Doesn't help everyone, but for some people they provide enormous relief and they are certainly worth a try.
Herbal teas are fairly cheap and can help -- I use fresh ginger and mint with some parsley thrown in. You absolutely do need to be on some kind of liver support -- again, your doc might write you a prescription for a good herbal liver cleanser (or at least write out what he wants you to take on his official notepaper). That should help convince dad.
Please keep very careful daily notes about what does and doesn't work and how you're doing. Some lymies have a terrible time detoxing and have to go outside the standard detox protocols for more help. You'll need to figure out if you're one of them.
Best of luck.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
In Buhners book, he recommends letting it cool a bit if you are prone to nausea, but it works best hot or at least warm.
I rarely have had nausea, but when I have, I have eaten ginger snaps. See if you can find some sugar free ones at the grocery store, if not, find a good brand.
Please try some of the tips posted here. Be careful with the morphine, you do not want to become addicted to painkillers.
Good luck dear and feel better. This will pass.
Posts: 85 | From here | Registered: Jul 2007
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posted
Thank you SO much for the sympathy and advice, everyone. I will show this thread to my dad, and I'll ask my new doctor what he thinks when I see him on Friday in NY. He has an excellent reputation and works closely with Dr. F at Columbia.
I am looking forward to trying some of the remedies you all suggested. I am a big fan of ginger-- snaps, diet ginger ale, and sweetened uncrystalized ginger from Trader Joe. I also love tea, and I think baths will help more than I thought.
My dad has always been willing to pay for massage therapy. He lives in the Virginia Beach area, where there is a wonderful massage school with Lyme literate therapists. However, I live in Northern VA (Reston) and I have no idea where to go nearby... I can't drive, so I need a place with weekend and evening hours. Anyone know of one?
I do definitely exercise caution with painkillers and I have a pain specialist who closely monitors me. I hate taking them, but when my pain gets out of control (which inevitably happens if I undertreat my pain) it puts me in the hospital (and we know hospitals LOVE Lyme patients!). I appreciate the concern though-- it's sound advice!
As soon as I can walk again, we are going to try doing some strengthening physical therapy to build me back up, but because I am so ill we are not sure when that will be, which is frustrating.
My dad can't go with me to NY on Friday because he's in the middle of an acquisition at work, but my mom is going with me, and she will report whatever the doctor says back to him. She is an encyclopedia of my medical history, so I am happy to have her along. Dad will probably go next month.
I'm going to start another thread with an update on what happened overnight... please read it if you can find the energy, I am so grateful for all the kindness and wisdom here.
Thank you, thank you, thank you.
Cat
Posts: 54 | From Virginia | Registered: Jan 2008
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