randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
after reading what you all have posted (and you all are a godsend. wow, i can't believe the good stuff i learn on here!! thank you, thank you.) i am stopping all meds.
well really it's only biaxin and diflucan. but i've been on diflucan on and off and this last bout for 2 weeks and i have 2 weeks of diflucan left.
i've got three refills left on the biaxin.
but i am stopping it and getting everything out of my system, doing the diet and then going to ask for dilfucan only.
i'm also going to ask for thyroid, hormone, and a full panel of everything (that's assuming he will do it of course).
the diet has been a nightmare for me. i can't keep my mouth shut when i should!!! gads, eating has become a pain in the rear.
the headache is less this morning and the swelling is down in front of the right ear.
i think the combination of biaxin and dilfucan was literally overwhelming my body and it just started to rebell.
has anyone just stopped everything and had to start over? has any doc just given you diflucan and nothing else?
i am so tired and frustrated with all this. i had been feeling better until i took that trip and now it's all downhill.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey Randi,
I stopped everything for a month and 1/2 earlier this Summer. Like you, it was thought that I might have some fungal issues going on.
During that time I also went on a 80% raw food diet and juiced a lot. I also took only diflucan.
For what it is worth, since going back on meds, I have had a few good days....the first in almost 2 years.
I hope that you expereince the same when you clear yourself out!
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"has anyone just stopped everything and had to start over?"
All the time.
When your body is acting worse ON meds than off meds...
It isn't suppose to be!
Lyme treatment does NOT have to be torture and you MUST listen to your body!
Give yourself time to clear out and act right.. THEN reassess and start slowly, one thing at a time.
posted
Wow Randibear, I feel like I'm listening to myself speak lol
I have been on abx for a long while started with Doxy, Biaxin, Bicillin, Plaq, supplements, etc. then switched to mino instead of Doxy, then dropped Bicillin, then dropped mino and plaq and boy was that rough.
Now and for the last 4-5 months or so been on Biaxin and Diflucan only. My LLMD think I am in remission but i still have symptoms so I dont know but he is very very sure I have a yeast problem.
I am to have a phone conference in a few weeks and I am also going to ask for just the diflucan for a bit and oh yeah did I mention I was sooo good with the diet for soo long but in the last 1 or 2 I cant stop eating everything I mean everything I've even had some booze which is a big no no lol
I did a few weeks back stop taking everything for just a weekend not because I was feeling bad just because I wanted to run a test, you know what I had a great few days. I am certainly not recommending you do this without speaking to your doctor but for me I felt good.
I think sometimes Rebooting (alt ctrl delete) is a good thing. Give your body a break and think re assess the situtation. I am not a doctor please speak with yours.
I wish you much luck and good health Melissa
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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I, too, stopped everything until I started going down hill, then started salt/c. I did do some Nystatin/Diflucan, as needed, because I figured after two years on oral abx I really needed to.
It has been a challenge, but I can honestly say I am doing so much better than I was on abx. Now workin on Humaworm, next kidney cleanse, then liver fluish.
I wish you all the best. Keep on Keepin' on.
Amy
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Randibear >>>>>,
Sounds like an excellent plan...I hope you get better quickly... those headaches and facial swelling are awful to put up with.
Here'shoping your Dr.visit goes well too!!!
Just Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
I stopped everything 2 weeks ago when I wound up with ideopatheic thrombocytopenia which dropped my platelet level to a scary bleed to death level of 7000. The ITP may have been caused by my lyme treatment since ceftin is on the the drugs that can cause it. I was on a ceftin/zithro oral combo for about 11 months post iv.
Treatment for ITP is prednesone, so now I'm on steroids!!! My LLMD agreed by phone consult with my hemotologist this was necessary. I see my LLMD next week. I can't tell what's what about how I feel. I have fatigue, eye dryness, and some other steroid related issues, but so far I seem to be eaking out my workdays and responsibilities.
I am very nervous about facing a relapse however, since in finishing prior lyme treatments I relapsed between 2 to 6 weeks and then took months to get back on my feet.
Best of luck to us all!
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
up
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I knew I had a problem when I got 10 large black and blue bruises with burst blood vessels in the middle of them, plus petichea (sp?) which is red dots all over my legs- more breaking capillaries.
I went to a walk in clinic, they did stat bloodwork that showed very low platelets. I would say unless you have unexplained bleeding (gums, nose bleeds) or unexplained bruising, you are fine on ceftin. It is actually a very very low risk.
Ceftin worked for me for a long time.
I am miserable where I am now though. I am on 40 mg of prednisone (not optional at this point) and tapering down. The taper is heck on wheels from the fatigue side. My face is so puffy it hurts and I'm having trouble walking-stiff hard to move legs with bad edema by the end of the day.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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jens
Unregistered
posted
i agree - My worst symptoms are pain and fatiuge, and those and 20 other symptoms just exploded. I figured I was chasing the angry beast from the cave, But i thought if i could just put up with a bit of hell short term, it would be so worth it long term.
But that just didn't happen. It turned into 3 plus years. - yeah tincup, it did feel like torture! I just kept thinking, next month, next month, it'll be different. They'll finally get knocked down once and for all.
I went off everything for the summer and feel better than ever. I think yeast was a huge issue for me too, so I spent the summer clearing it from my system and taking only supplements.
I am worried about fall with the mold and cold and dark days, so I'm going to up the Vitamin D and add infrared sauna and a "sun" lamp, and see how that goes.
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
randibear - The "Stop and Start-again" is something that many of us have practiced a number of times while in tx for TBD. Reassessment is necessary to find out what's going on with YOU! Smart move; I salute you! Keep us updated.
BTW - You said the "Diet" has been a nightmare for you... I assume you're talking about the low carb, yeast prevention type diet? (Everyone HATES it!)
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Biaxin was the final straw for me too. It just really did a number on my body and 4 months later I am still not ready to be on any meds.
The good news is that I haven't gotten a lot worse (not any better either, unfortunately). I've been doing acupuncture to try to keep from slipping backwards too much.
As much as I would like to get back to treatment, I know I have to listen to my body and try to be patient. Good luck to you!
Posts: 345 | From East Coast | Registered: Apr 2008
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