posted
Hey everyone! As I continue to struggle with this @#$% disease, I am, once again, turning to you all for some opinions, thoughts, etc.
1. I understand that you are supposed to get worse before you get better. But, what, really, causes this? After all, with all other illnesses, you get better with meds, not worse...well, except for maybe cancer...where you either get better or die. I feel like I am not really ``living'' my life anymore...I am just a warm body staying in my house. How long is the ``worse before better'' thing supposed to last? Mine has been straight with no relief what-so-ever for almost four months. No herxing really, just the same to worse. It just, to me at least, seems like no meds are working and the disease is progressively getting worse!
2. My LLMD recommended taking Florastor. I read some older posts about it and that you can't take it with Nystatin, or when you have a PICC line, etc. I understand that I am to be taking it to try to prevent C. Diff. Since it is ``good'' yeast, does it also prevent ``bad'' yeast from flourishing?
3. How soon to see results on rifampin?
4. I had my LLMD appointment yesterday. Since I am still seeing no improvement, he switched my meds yet again. I was on biaxin/ceftin for 2.5 months with no improvement; then he put me on rifampin/zith for a month to go after the bart, no improvement; now he switched me to amoxy (3000mg) with 1000mg probenecid/1000 biaxin. I have been on welchol and plaquenil throughout. He also said that, since I have neuroborreliosis, this will be the last ditch effort on orals before he starts me on IV Rocephin next month, if I don't see any improvement! I also have an appointment with another LLMD for a second opinion, the end of this month. My LLMD said yesterday that I have all three...lyme, babs and bart. Any thoughts on this?
Thanks in advance!
This disease SUCKS!!!!
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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I am sorry to hear about your suffering. There are a few things that I can share with you. First, like you, I was very active and athletic when I contracted Lyme disease. Unlike you, I went undiagnosed for 17 years. You are way ahead of the game because you haven't given these bugs years of time to mess with your body.
The one thing I have learned through the years is that patience is essential. You are in treatment. Stay in treatment. Get as many opinions as you can.
The "you will get worse before you get better"..that to me, like you is a vague statement that doesn't offer much consolation when one is ill. Some people herx dramatically, some don't. I am not one of those, so when I feel worse, I just feel like I'm worse!
Everyone is different, but it may take a long time before you can recover your total physical capacity. If you need counseling, get some...but find somebody who understands and can give you coping tools. This is important. I was luck to find a yoga teacher who has been invaluable to me in terms of helping me think that this can be overcome, while working within my limitations.
Remember, this is an infectious disease, therefore you have an excellent chance of controlling it with the right medications. My doctor says it is a matter of trying different combinations until you find the one that works...but this takes time.
Cultivate some additional hobbies, read good books, watch inspiring movies...
I am still in treatment many years later. I have not been able to do all that I wanted to do, but live a wonderful life and have accomplished most of my dreams. Stick with it, every day learn something new!
have a good day, and yes, it is not a fun or easy disease, I am a biologist and I can't get a grip on it....
Posts: 172 | From ohio | Registered: Feb 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I think they may have switched you too quickly and if he said you had all 3, why the heck stop the Rifampin for Bart? Takes longer than a month to get anywhere.
The worse before better - it's the bacteria dieoff making you toxic, which is why you get worse.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 10/09 your symptoms began
4/10 you were diagnosed, after 6 mos. ER visits, tons of docs/tests
Your LLMD said yesterday that you have all three --neuroborreliosis, babs and bart
You ask: " How long is the ``worse before better'' thing supposed to last? " ----------------
I imagine your LLMD has discussed this but you're just wondering about others' experiences to get some hope.
It could be a few more months, or even a few years. I hate to be so brutally honest but I'm surprised you've not been told this yet. Lyme is a very, very serious infection of great complexity. It can do a lot of damage. And, treatment does not make people feel better until the fires have been put out.
So much depends on the severity, other infections involved, etc. As you have more than just lyme, it will likely take longer.
So, if what I say makes you sad or scared, I'm sorry. Still, there are many things you can do along the way to help - in a decisive but gentle fashion. You may be lucky and see improvement in a couple more months, but it could be longer. The more you can understand about the nature of these infections, the easier it is to then work with your body on this.
It also involves a grief process for such shocking news. For something that most doctors know nearly nothing about to being told that this will likely make you fell ill for some time still can knock one off their chair. I think if patients were told early on that this is very serious and what that means, they would not be so crushed when a miracle did not happen right away.
Have you see the film "UNDER OUR SKIIN" yet? The Park Ranger there made very good progress but it was not until the 3 year mark that he really felt he turned the corner. You may feel somewhat better in a 6 more months or a year - and then improve from there - but it's nearly impossible to say.
Still, you can enjoy many things about life along the way.
Be sure your liver and adrenal support is top notch, always. Probiotics, too. Rest when you feel the need as your body can't keep you up and moving and also repair all at the same time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have been sick for 14 months. My symptoms have never been extreme or neuro. No coinfections have shown themselves so far. I thought I should get well very quickly.
Got treatment 10 weeks after the tick bite. Too low a dose, but I took Ceftin for 3 months. Relapsed 2 days later.
Finally saw an LLMD and got diagnosed about 6 months after tick bite and started doxy. I had a bad herx, then just felt a little worse than I had before, lasting 4 months.
After 3 months of doxy, added Biaxin, and after the first month of both, FINALLY started to notice a little improvement. It wasn't until a week and a half ago that I had any day where I felt like 99% of my old self, and then I got 3 of them in a row, but have felt pretty bad for the 10 days since then.
I mention all that to point out that even if you get treatment early and have what seems like a mild and uncomplicated case, recovery is not quick, and it may take many months to see the first improvement even when it is working.
The other thing is, I spent months in denial, anxiety, anger and mourning for everything this illness has taken away from me. I'm grateful that I still have a lot left compared to some people, but that just gives me more I might lose in the future.
At first I grieved for every lost thing individually. Finally I realized that the disease was going to keep stealing things from me as long as I was sick, and I had best come to terms with the major change in my life and accept it as a long-term one.
It is going to keep on hurting me and taking things from me for a while, but I know I am going to win in the end, and get better, however long that takes.
Reaching that attitude (with difficulty) has finally allowed me to get through it with a lot more calm.
It still gets to me, though. I just had a meltdown this morning, because I just get so TIRED of it all.
But giving up is not an option, so I guess we have to just pick ourselves up yet again, and keep on going.
Good luck, and I hope you get some relief soon.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
these guys have said very eloquently what I have mentioned before. Find the positive, stay in that space, take your meds, you'll get better.
Posts: 299 | From New Hampshire | Registered: Jul 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I've gotten a lot better treating HHV-6, EBV and coxsackie B.
Get tested for those, if you haven't been. HHV-6 and EBV are best tested at Focus Diagnostics lab, and Coxsackie B is best tested at ARUP.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
After a year of treatment (and being stuck on the couch), I had a reprieve and was able to start running (distance) again. I'm backsliding now, but it was great while it lasted. It's a rollercoaster ride, and a long one. Eventually, hopefully, the good periods last longer and longer.
Yes, the good yeast in Florastor is supposed to prevent the bad yeast from flourishing.
This detour is maddening, but hopefully you will come out even stronger. My 2 cents worth: learn all you can about detox. Good luck!
Posts: 57 | From western Virginia | Registered: Apr 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
My sister did Rifampin for about 9 months - two years into treatment and she felt realy crappy the entire time she was on it. It did wonders for her Bart, though.
I felt really bad for the first 6 months of treatment - like a lump.
Posts: 1761 | From USA | Registered: May 2006
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