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I'm not so sure my treatment plan is working at this point....

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Posted 3/17/2015 11:22 PM (GMT 0)
I'm on a ton of stuff. For abx it's Rifampin, Azith, and Plaquenil. I take teasel, hydrocortisone, a mushroom blend, 100 billion probiotics, meriva, boswelia AKBA, cats claw, caprylic acid, broncheze, liposomal glutathione, mesosilver, mc-bfm-1, serraflazyme, hawthorne, d-mannose, b vitamins, liver c, taurine, A-Myco..... I think that's the majority of it.

But I feel like crap. I feel like I've had some herxing when my meds changed, and it's hard to tell the difference between herxing and flares. I feel as sick or maybe a little more sick than when I started this journey in September. My symptoms switch around like crazy still.

My hands have healed with this cool lyme rub my LLND made me. That is the only improvement that stands out. Which is HUGE becuase nothing else worked for about 3 years. The skin was literally falling off they were constantly bleeding I couldn't get them wet.... etc.

The mood swings seem worse. I feel more crazy right now. And "dumbed down". My pain is out of control and meds aren't helping lately. I have more problems than just that I'm just too lazy to write it out. I feel disappointed because my doc said usually by the 4th month people start having more good days then bad. I'm just not there yet..

I've explored lots of detoxing avenues. I don't think I've found a good balance there yet. It's either too much and I make myself sick for a day or too little and things start to snowball.

What do you do when you plateau like this? I feel like I'm taking sugar pills honestly. I took a couple weeks off of everything and still felt miserable. Maybe I'm just not remembering things right and that's why I feel like I haven't improved. I know i have a terrible memory..
Posted 3/17/2015 11:31 PM (GMT 0)
I felt immediate relief as soon as I started abx. The standard tx right now from what my llmd tells me is omnicef and doxycycline. Hope this helps.
Posted 3/18/2015 12:00 AM (GMT 0)
IHL, I'm sorry. I just wanted to let you know that I haven't had much relief at all from my antibiotics yet.

I was feeling really discouraged (and still am). I had an appointment with my LLMD yesterday and I was talking to him about this. He re-iterated that it just takes a LONG time. What works for one person won't necessarily work on another. Symptoms are different for everyone and ABX reactions are different too. I guess we have to see what clicks for us?

It's funny, I described it as I feel like I'm taking sugar pills too :)
Posted 3/18/2015 1:57 AM (GMT 0)
IHL - try not to be discouraged - I know you are desperately wanting to feel some improvement...I know that feeling.

But, when I feel like I'm not getting better fast enough, I read posts that others have written - and many of them say they didn't feel significantly better until 8 months, or 9 months, or a year.
It could be longer, if we are addressing lyme, and we have bart...etc.

I think mine is going slow because the bart infection hasn't been addressed yet.
On paper, it looks like I'm getting better, but I really don't feel great most days. Yes, I'm sleeping better, yes, my rib pain is gone, yes my anxiety is gone...but I would say I have about 25 more symptoms that are bad enough to overshadow the improvements that I should be feeling.

Did you write all your symptoms down when you first started treatment? And have you looked at them to see if there are any improvements?
Posted 3/18/2015 10:40 AM (GMT 0)
IHL if you just started Rifampin then that alone made me herx for 15 days straight till I finally back off and only took 300mg for several weeks then added in the other 300mg. You are taking a lot of stuff, did you add them slowly back in after your break?

I'm on my 2 nd month straight of rifampin and it has messed up my sleep, I ised to be able to sleep 8-10 hr, now I'm lucky to get 5-6, I'm awake 3 times at least getting up to go bathroom and my pain has been constant. I'm starting my 2nd yr of treatment and was doing well till the Rifampin and now I feel like I'm back to square one even though a bunch of symptoms are gone.

Glad you have relief with the hand issue and praying for you to start feeling better.
Posted 3/18/2015 11:37 AM (GMT 0)
Hi Hon!

I'm the same as you. Started treatment in September, and no improvement at all yet. So discouraging. Especially when I read posts from others where they almost instantly feel better on abx. I don't know why we have a lack of progress. I wish we could feel a little better so we know we are on the right path. I constantly find myself questioning if I even have Lyme!
Posted 3/18/2015 12:03 PM (GMT 0)
It took my son 6 months for the raging to subside and for him to start to come back to us. He is at 9 months and is back to part time school with struggles. OCD and Tics are not great though. Doxy 9 months, detoxes, cleanses, herbs, probiotics and Rifampin 1 month. All I keep hearing is that it takes a lot of time and to push on....

His LLMD started him for 6 mos. with 200mg. doxy then went to 300 in the fall and two months later, 400. Right now he's on 150mg Rifampin, once a day (almost 5 weeks). Guessing he will move to 300 next week's visit.. His LLMD takes everything really slowly. Drives me nuts, but I guess it's the best way to not overload him.

Hoping you all feel better soon!

Post Edited (Lovemychildren Mom) : 3/18/2015 6:06:33 AM (GMT-6)

Posted 3/18/2015 1:59 PM (GMT 0)
The thing is things seem to keep changing with you. Same as most of us. It is hard to gauge the progress with the constant changing symptoms. I am the same with that. I think we need to find the positive and really focus on that. I wish I had the answers for all of us. Hang in there and keep trying.
Posted 3/18/2015 2:43 PM (GMT 0)
I did not feel any better by the fourth month of treatment. Different, yes, but not better. It was a long, slow road back to wellness with some twists and turns, setbacks and plateaus. Improvement came all of a sudden, like turning a corner.

You have had some viruses (as in colds and flu), right? They always set me back and my LLMD is always reminding me that those infections always make symptoms worse.

So why the hydrocortisone? I thought that was not recommended for Lyme patients as it suppresses the immune system.

Hope you see some improvement soon.
Posted 3/18/2015 3:26 PM (GMT 0)
Thanks you everyone for your replies! Really helps to put things in perspective.

I'm taking the hydrocortisone for adrenals. I thought it was bad too, but I'm following my doctors orders.

I ramped up slowly when I started back on everything.

And ya, I definitely keep having things come up. I keep catching colds and the flu.. ugh. Makes me feel like I'm dying. I feel like such a wimp! It really is THAT terrible though. I get a little chest cold and start coughing up blood. I get a little flu and I'm 105 and hallucinating screaming for my dead mom all night. Crazy how hard it hits..

I love how you said to keep focusing on the positive dancingbear. Lol. I definitely struggle with that. I think we all must at certain points. This is a frustrating existence.

I know a lot of people don't feel well or any relief for a long time, sometimes years. I don't know why I go straight for questioning for my treatment. I'm just loopy. My brain isn't functioning the way it used to. and that makes me feel kinda silly.

I bet I'm going to look back on this sometime in the future and feel really petty And pathetic. just have to keep getting through the days. Ugh. Such to feel like you're backtracking. mountains and valleys. This too shall pass. Hopefully sooner rather than later.
Posted 3/18/2015 5:27 PM (GMT 0)
you will never look back and feel petty or pathetic. You will look back and think how strong you were to make it thru and keep going. Come on girl!!! This is hard and it sucks the suckiest crap ever! You are a strong young woman and you need to see that about yourself! Seriously!!!!!

Yesterday I was talking to my hair dresser and told her I have lyme. She says she has it too. This is the first person I have met face to face with lyme. She said she is living life and getting on with it. Not waiting for this stupid disease to clear. I thought that is great. So I am not going to give this lyme disease any more power over my life than it already has! I am not quitting, just moving on. Giving it back to the universe. Not dwelling on each and every symptom and not being scared of it anymore! I am done with all of the extra crap that creeps into life because of this. I am going to breath thru these symptoms and not hang on to them. I am not going to allow this to consume me any longer! I am going to work on being healthy and happy. I am going to walk and exercise, meditate and eat healthy and of course detox. I am going to release the pain and discomfort and concentrate on other things.

That is my latest goal. I probably sound a little crazy.

That might sound a little crazy, but it is where I am today.
Posted 3/18/2015 5:58 PM (GMT 0)
I think it's great dancingbear! Ive definitely had moments of power and strength although fleeting.. and then I have times like this where I'm just a complete mess.

My symptoms lately have made it to where I have a hard time swallowing, I'm off balance walking and I fall down, my vision is so bad I feel totally blind.. I can't drive. It's hard to even talk. I'm going pee about 60 times a day and bleeding really bad. The mood swings themselves are incapacitating.. These kinds of symptoms I can't just Go about my day anyway with. I just have to wait for them to subside. I've lost 11 pounds. If I remember right I was only 91 last time I was on a scale about a week ago and I should be at least 105. Can't swallow or stop puking. Swollen aching joints. Headaches that make me want to shoot myself in the face. Bald spots all over my head the size of dimes.

I can't stand up for more than a few minutes. Which wouldn't bother me so much if I didn't have a 3 year old to chase around. I think that's what puts the pressure on me so muCh. If it was OK for me to stay in bed and It was ok to rest every time I needed to I wouldn't feel like complaining so much. Whining rather lol. The light and sound sensitivity thing around a little kid is absolute torture. Him throwing tantrums and all that good stuff that 3 years old sends my stress level through the roof.

I literally can't pick him up without fearing I'll drop him or fall down and hurt him. Like yesterday being outside I felt myself slipping away and everything started going black like I was going to pass out and he wouldn't listen to me that it was time to go in the house and call someone for help. I couldn't leave him by himself. I couldn't pick him up and carry him in like a normal parent would. So I sat there on the ground with my head in my hands begging the universe to keep me conscience. It eventually subsided and he stopped screaming at me and everything turned out ok. But what if it didnt?

My cell phone just happened to die. And something that simple and stupid could end up being a huge deal. Stressful doesn't scratch the surface.
Posted 3/18/2015 7:52 PM (GMT 0)
yea IHL that really sucks bad. But you keep on going and you will get better. I think your last flu really put you back some. When do you see your LLMD again? I wish I lived in Oregon, I would come and help you! You really are a very strong person. You will see that some day.
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