posted
I heard the dreaded word, er, letters, yesterday.
I had an appointment with my LLNP yesterday. I continue to have tinnitus. It's so bad that I'm sleeping with a fan practically in bed with me.
I also continue to have eye issues, but they might not be directly caused by Lyme anymore, though Lyme kicked the problems off. I'm seeing a specialist optometrist in CT next month.
I had a wicked headache this past weekend. Right in the curve between the nose and the brow. The supratrochlear nerve is there.
I was in bed all day, at times laying completely still because it hurt too bad to move even the slightest bit.
I woke up with it. Usually, just using my eyes will induce a headache, but since I woke up with it, I don't know if it was eye related.
I'm also dealing with depression still. I don't know if it's situational or from Lyme. To keep it short, we are here alone, with no support. No family here and no friends. Lyme got me too quickly after we got here for me to be very social. We have nobody. I cry a lot. I'm pretty alone and trying to hold everything together for our boys.
I have some memory and some word-retrieval issues as well. Sometimes, I just can't THINK! I admit, I've always had some executive functioning issues but sometimes it goes beyond that, even.
I broke down with my LLNP yesterday. Told her about the tinnitus, the headache, the depression. She thinks I'm neuro and wants to put me on IV. She thinks I've got a lot of inflammation in my head/brain and IV is the way to get it taken care of.
I'm terrified. Scared of having a PICC line in my arm, and all it entails, for probably months.
Scared of how much it's going to cost my family and feeling a lot of guilt over it.
Scared of being rejected by my insurance company.
I have to be retested for Lyme since my positive test is over a year old. I go tomorrow for the blood draw. My integrative doc will also write the order for the PICC line if it gets to that point. Thanks goodness for my integrative doc. <3
I guess I just feel so unsure because in one respect, I feel pretty good. I'm not bed-ridden. I have some tired days that I think are from treating babesia, but I have some good days, too. My son's birthday, April 3, I felt GREAT. Lots of energy, my eyes didn't bother me much. It was a great day.
Then, three days later I'm in bed with a headache. Tinnitus screaming in my ears. I can't function to get a damn grocery list together. The depression monster creeping in.
I'm just having trouble reconciling that I might need IV because everything below my neck is great.
Can't I just cut my head off?
I just with I knew someone IRL who has BTDT who I could bounce things off of and who could walk me through this.
Just to give a reference point: I was bitten in May 2009, dx Sept 2011 and started treatment Oct 2011. I took abx for 1 year and went off in Oct. 2012.I probably shouldn't have. Symptoms began coming back/getting worse in Dec and I went back on abx on Feb 1, 2013. I'm taking Ketek, Augmentin, pulsed Flagyl and tons of supplements.
If you got through this entire thing, I thank you. Comments, suggestions, even constructive criticisms are welcome.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
Hey i thought I would write to you. Iam in the same predicament as you are and I even have the same symptoms. i often ask if I could just cut off my head. Just wondering if you have any coinfections? My llmd seems to think that my head roblems could be caused by bart but im unsure.
I think you should listen to your dr and get the IV!! Ive got to run but ill check in on this thread
good luck
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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gmb
Unregistered
posted
Babs treatment helped a lot with my constant head presssure and congnitive issues. I tried this for awhile before eventually going to IV.
Its a tough individual choice, and IV doesn't aways work for everyone.
Also look into Stephen Buhner's recommended herbs like Cryptolepis and Sida Acuta. These hit both babs and Bart
Keep on posting here to get more help, and contact a local Lyme support group
posted
IV saved me. I did orals for 6 months with zero improvement. The GI issues kept getting worse. I couldn't eat anything yet I kept gaining weight.
I do use the herbals in addition to the IV and oral abx. Within three months of starting IV I began to see a slow gradual improvement.
I use cyrptolepsis, sida acuta and alcornea.
I had been sick so long I just didn't want to waste any more of my life waiting for just orals to work. Plus, my husband has Lyme and coinfecions too. Twice the cost for everything.
I have a bard power slim port. It is surgically implanted and it was a breeze to have done. It allows me to swim, take a bath, shower and use my infrared sauna on the days the huber needle is out.
I had to learn to put the needle in myself when I took a vacation and now I do everything myself.
I access myself and my husband and don't need nursing care any more. We do have to have blood work every two weeks to make sure our levels are okay.
You must take proteolytic enzymes on any IV therapy. Our blood is thicker and using these enzymes keeps blood clots down and your line open.
Clindamycin was the drug that turned everything around for me.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I'm taking artmisinin right now and I'm about to start malarone since the I reacted to the art. Not a huge reaction, but a reaction nonetheless. So, we'll see what happens with the malarone added.
My husband is freaking out a little about the prospect of me going on IV. It's been hard with nobody here for support and I think he's afraid that I'm going to get sicker.
That and the financial end of it, too. I think he's envisioning our entire savings being wiped out.
He works with someone whose wife and daughter both have Lyme. He's going to talk to this guy tomorrow.
All of this just scares me.
I got my blood drawn for another Western Blot today. If it comes back negative, does that mean that port or PICC line insertion won't be covered by insurance? I know meds won't be.
Thanks for the input and for reading. (again)
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I read your post and can connect to so much of it. I'm sorry that you are going through this. I call Lyme the loneliest disease.
You may find that depression worsens with mepron. Just something to watch out for.
My son did 9 months of IV and it turned him around. It cleared up so many things. In hindsight, I wish we would have done a port and stayed on IV rocephin for longer.
As far as insurance, I can't help you as we have been fortunate with coverage. Many here will be able to help you find cheap ways to do IV.
Do you know if any of your abx can be worsening your tinnitus?
I hope you get answers and that things get easier for you.
Hang in there!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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When my tinnitus first started, I was on zithromax. When I stopped the zithromax, the tinnitus persisted. I still had it when I went off abx in October. It got worse when I was off the abx. It hasn't gotten any better since I've been back on.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
Good to know. Thanks.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
sideways, I relate so much to this post and your symptoms to have to make such a difficult decision. IV ABX was recommended to me for the very same symptoms, but I could not go through with it. I was too worried about the financial drain it would place on my family as well as the risks involved, as my LLNP at the time was very hard to communicate with in between visits.
I stopped ABX after 1 year and have been trying various herbs since then. My symptoms are all above my neck and the tinnitus is the worst. I feel much better off the ABX than on. But I can tell I still have a way to go. I don't know if it is co-infections, parasites, heavy metals, or something else still plaguing me.
I have recently started acupuncture for the tinnitus and it seems to be helping me. I also just started physical therapy for neck tightness (knots) and that seems to be helping too! (it is early, so I know I have to be cautiously optimistic)
Our state is in the process of working on a bill that would force the insurance companies to pay for recommended treatment for lyme. If that passes, I will probably consider the IV ABX with a doctor that I trust will monitor carefully.
I hope you will keep us posted on your decision.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
sideways- you mention supratrochlear nerve with your headaches?
I too have been getting these with tenderness right under my brow.
I think its a herx from the antibiotics, as I get them soon after I dose, but I'm not sure. Is there anything else to be aware of with this?
good luck with your decision!! I too feel anxiety of the IV.
One note for help from my accupuncturist: (if you do decide to get the IV), take your medicine with intention. Remind yourself while taking it that it will make you better!
I hope that helps! I too feel so lonely and am just starting to climb out of my shell, but I'm very new to all this... good luck!
Posts: 9 | From minnesota | Registered: Dec 2012
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
IV is not that big of a deal. My insurance paid for 1 month. So I got my supplies, and had a few nursing visits. My husband learned how to change my bandage- he's much better than the nurses!
My meds run around $350 a month. I order my PICC supplies on line- in bulk they are much cheaper
Don't fear the IV- I turned around quickly on it
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
beths is right. Order your supplies in bulk and you can bring your costs down. There are many here that have to be creative with finances to continue their treatment.
Just let us know what you are looking for in supplies once you get going. Someone here can point you to a few places to save money.
I now access myself and my husband with a port so we don't need nursing care anymore.
My husband went on IV a year after I did and so we have double the costs. We are heading into retirement in a few years and were very active people before we got sick.
Even with all the money we are spending and the sacrifices we also have to make, we want to be back to ourselves before we retire.
You can't put a price on your health. You do what you can afford to do to get better. Our meds for two people run $500 a month and I infuse twice a day and my husband infuses once a day.
IV has made a huge difference. No regrets being poor if I will be healthy in the end.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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I'm all for spending money to get better. But then I read about IV costing $1,000 a week after insurance stops paying and it tends to freak me out a bit.
And then there's fear of the unknown.
I'm not off the ledge yet, but the posts here help.
Faithful, I read in another thread about your port. Do you mind if I PM you with some questions? (probably not tonight though. I'm heading to bed soon)
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Sideways how are you doing?
Posts: 3528 | From US | Registered: Apr 2007
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