Last Thursday I woke up and felt like crap. Nothing unusual for a Lymie so I didn't think much of it. About lunch time I felt so bad that I could hardly keep my head up. Took my temperature and I had a 99.8 fever.
This is the first time in three years that I've run a fever. Within an hour or so I developed bad body aches, headache, joint aches etc.
Woke up in the middle of the night that night shivering, teeth chattering cold. Took my temp and it was 96.4. I got the heating pad, an extra blanket and put on socks and managed to fall back asleep. Woke up two hours later DRENCHED in sweat with a fever of 100.5.
The next day I had no fever when I woke up and felt pretty ok. Then about three that afternoon started feeling really bad again, started running a fever, body aches came back, headache etc. That was Friday and I've run a constant fever since then. I went to the Dr. and they did a strep test and flu test - both were negative.
Fast forward to this morning. I woke up with a horrible headache. My entire head feels like it's going to explode and my neck is really stiff and painful. When I look down the neck pain gets worse and spreads into my upper back and shoulders. Currently running a fever of 99.3 Keep in mind that like a lot of others my normal temp is about 97.4.
Wondering if I could possibly have viral or Lyme meningitis? If it were bacterial I'd be dead by now. I really don't want to go to the ER as I'm currently in the process of getting on my husbands health insurance...this is the last thing I need!!
But I am sick, sick, sick. Nauseas, zero appetite, weak, feverish, body aches, stiff neck, SEVERE headache like my brain is swollen inside my skull.
What to do, what to do........?
Posted by tricia386 (Member # 29623) on :
Are you currently on any medication?
Posted by BoxerMom (Member # 25251) on :
This is Babesia. Any chance you got a new bite? Recent stressors that caused a flare?
Have you been treating Lyme & Bart, so now the Babesia load is highest?
Babesia is notorious for waiting in the wings, showing few or no symptoms, then KAPOW! Full blown Babs.
Are you still with a LLMD?
Posted by seibertneurolyme (Member # 6416) on :
Sounds a lot like babesia to me also.
Bea Seibert
Posted by Atta (Member # 30786) on :
Is it possible it's a severe herx from the rife? I think you said you changed things up recently with adding in babesia? The stiff neck happens to me really bad along with the brain swelling during major periods of die-off and when my liver and gallbladder are congested. Have you thought about running an organ support program to see if that helps?
Posted by lymielauren28 (Member # 13742) on :
I was reinfected this past October with Bartonella. Started treatment for it about 3 months ago (doxy, Rifampin) then started having lots of old babs symptoms - nothing unbearable though. Light night sweats, some hot flashes, burning thigh pain, etc.
I stopped all abx about 3 weeks ago and started rifing heavily for babs. Two days prior to all this I rifed for Babesia and parasites. I've rifed long enough at this point (years) to know that this isn't a herx. I thought it was at first - but not a week later with symptoms worsening.
I put in a call to my LLMD and waiting to hear back. Bea - any reason why I would start to suddenly run fever with alternating shivering chills after rife? Do you think I could have killed off a bunch but not all in my red blood cells and now they're going into new red blood cells?
Thank you all so much for your replies. I'm honestly scared to death at this point and it really means a lot that I have people here who care.
Posted by lymielauren28 (Member # 13742) on :
Hey Atta....at first I thought it was a herx but I've gotten worse day by day since my last rife session. Don't know what to make of it.
Posted by Atta (Member # 30786) on :
Sending good thoughts your way and wishing your LLMD swiftness and clarity so you can get this figured out and feel better soon.
Posted by lymielauren28 (Member # 13742) on :
Thank you Atta:)
Posted by bcb1200 (Member # 25745) on :
I had all you describe last fall. Thought it was a herx. My WBC had plummeted due to the Rifabutin medication that I was on. (it is a common side effect.)
So...suggest you call your LLMD and get some bloodwork done.
Posted by lymielauren28 (Member # 13742) on :
Bcb, I stopped Rifampin almost a month ago, so don't think that would be it....
Posted by seibertneurolyme (Member # 6416) on :
Lauren,
Hubby has never done rife. But I do know that if something brings babs out of hiding it can act like a new acute infection with the alternating chills and fever.
Hubby has been running daily fevers now for about 2 months again. He had been off all antibiotics, antimalarials, antiparasitics and killing herbs for 50 days. Tried to do a 5 day med challenge and that is when the fevers started. LLMD thought babs -- we worked really hard for 6 weeks adjusting meds and herbs to go after babs. Finally found a combo that worked -- but it worked too well. Hubby had 5 ER visits and a 2 day hospitalization all within a week.
His really bad seizure-like spells were reactivated along with the brain swelling headaches. His bloodwork showed a severe hemolysis event --RBC went from 5.0 to 4.15 within 48 hours. Hemoglobin and hematocrit went down. Platelets went down and so did WBC. Bilirubin went up.
Hubby got a new PICC line put in today and is back on IV rocephin. His LLMD thinks we need to get the brain inflammation down before getting aggressive with babesia again. The doc is convinced that the die-off released whatever was hiding out in his red blood cells -- which is probably some bartonella and definitely lyme and those infections are once again active.
So actually I think babesia is your main problem but it can trigger encephalopathy type symptoms in some situations as it seems to have done for hubby.
Hubby tried oral minocycline and oral doxycycline but neither seemed to help his symptoms much. His PCP only wrote the script for 1 gram of IV rocephin for 9 days. We finally got things in place with the LLMD to increase the rocephin to 2 grams today and the plan is to increase it to 2 grams 2 times per day after 3 days. Hubby has never had more than 2 grams per day before. He definitely could tell a difference between 1 gram and 2 grams. He is also back on seizure meds.
I had hubby increase his dose of lumbrokinase and I have ordered some feverfew tincture and plan to put him back on that. But for really severe symptoms IV meds are about the only thing that will make a difference quickly. I wish herbs would work but by themselves just do not feel they are strong enough.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by lymielauren28 (Member # 13742) on :
Thanks Bea. My wonderful Lyme Dr. called me back yesterday afternoon. My Dr. actually works very closely with your Dr. and trained under him even though they're in different states. By the time he called me back I was in so much pain that I could barely talk, my brain was so swollen. Couldn't move. Managed to let him know everything that was going on and he said unequivocally, no questions asked that it was Babesia.
He called me in a script for Malarone and Zithromax and my husband picked it up last night. We went with Malarone instead of Mepron since it's generic now and a little cheaper until I get on hubby's insurance.
He was adamant that I start with only two Malarone a day for the next 10 days. He said that this was behaving like a new, acute infection and that my load was HIGH. He said because of that that if I went too much too fast that it would land me in the hospital.
I took my first dose last night about 7 and then slept all through the night. It was heavenly. I can't remember the last time I did that. My head pressure is still here this morning but I'm up and walking and talking which is an improvement from yesterday. I'm going to order some Artemisinin as well as cryptolepsis and may decide to add A-babs in the future as well. If there are any other herbs or supplements that you recommend please let me know.
Rife worked for me for a looong time and worked very well. This was after 3 years of high dose meeds and antimalarials and endless med rotations. This new infection in October is proving to be too much for machine to handle though and that's ok. I know it still has it's place somewhere in my future and I'm thankful that it gave me such a long run of wellness.
My heart really goes out to you and your hubby and all that you've been through and continue to go through. At the same time I'm touched and inspired by the the two of you. I've followed your posts on here for years and I don't think Ive seen a stronger advocate than you are for your hubby. You seem to be tireless...although I'm sure that it does get exhausting...I've never once heard you complain. I'm truly touched by that.
My husband was just diagnosed about three months ago. He received his positive Lyme diagnosis the day before our wedding. He also has a good case of Bartonella as well as high viral titers for EBV and HHV6. He was the picture of perfect health when we first started dating. Fast forward a year later and he was a different man. Every Lyme symptom under the sun.
Our life looks nothing like it did 18 months ago. It's been very humbling. We both try to be each others advocate and cheerleader and most of the time we do a pretty good job. My hubby is the eternal optimist and Im more of a realist and I find that that works perfect for us.
I had a nice pity party for the both of us about a week ago. I told him that this should be the best time of our life and then began complaining that we had yet to take a honeymoon due to our poor health and how unfair that was and on and on and on. He looked at me and put his hand on my face and he said..."But we're still happy, even in the midst of all this, even when we're sick. If we can be this happy and in love in the worst of circumstances just imagine how much better things will be in the best of circumstances".
Wow. Thank you hubby for that fine piece of humble pie:) I needed it. He shows me the light when all I can see are shadows. I'm so grateful for that and my soul rests on the fact that God has a plan and a purpose for us.
Anyways, I have rambled this morning. You will both be in my thoughts and prayers and thank you as always for your input and advice:)
[ 06-12-2012, 09:51 AM: Message edited by: lymielauren28 ]
Posted by soccermama (Member # 35101) on :
Your husband sounds like a keeper. What would we do without that kind of support? It lifts us up when we need it.
Posted by lymielauren28 (Member # 13742) on :
Soccermama - yeah he's a keeper! Manybites I'm now treating both babs and bartonella. Fingers crossed!
Posted by rainbowriver (Member # 24772) on :
Lymielauren, how are you doing now on babesia treatment?
my symptoms are very similar to yours just to a lesser degree. all around headache, pressure like, burning headache, spine pain, low fever. when it gets really bad, can't go to sleep, debilitating. it causes neuropathy,waves of sensation...
My main problem is the all around headache, back of my head, temples, top of my head, etc and spine pain.
Posted by rainbowriver (Member # 24772) on :
how do you treat both babs and bartonella?
Posted by lymielauren28 (Member # 13742) on :
Hey Rainbow,
Well, I'm one week in to Malarone and I don't feel like I'm on death's door anymore, so I'm taking that as a good sign. The difference between how I felt last weekend and how I feel this weekend is night and day.
I would definitely treat Babesia with your symptoms. My Dr. Has me on Levaquin for Bart - so far so good.