I am feeling so bad! I was taken off IV vanco (9wks on) due to suspected drug fever.
Temp 99.0-100.0 everyday for a month.
Also taken off IV Doxycycline due extreme photosensitivity(5wks on).
I couldn't even walk outside with out my hands burning to a crisp.
I have been off both since July 25th.
I am still having fevers and now am really dizzy have blurred vision shortness of breath major pain in hips and back and neck and lots of heart palps.
I am having difficulty functioning due to the dizziness.
I had blood cultures drawn that show no growth in 12 hours.
I am so confused.
I also had an episode of thrush after stopping the abx and took diflucan for 3 days which my md said was aggressive?
Posted by sutherngrl (Member # 16270) on :
I am so sorry you are suffering so. Maybe these meds are too much for your body right now. You might need to try low doses of orals meds for a while. Some of us have to do the low and slow method.
Posted by Spindleshanks (Member # 32556) on :
oh and it feels like something is electrocuting me in the ankle.
Posted by Spindleshanks (Member # 32556) on :
Anyone else?
My MD is not giving me any insight as to what is going on and I just thought maybe someone else had gone through this.
I have been trying to research but it really hard. Nothing makes sense and there is so much info.
Would it help if i told my story? I am not sure if that is what people normaly do when they join?
Posted by AZURE WISH (Member # 804) on :
you got worse on iv abx or after?
as far as yeast are you taking probiotics? does your dr have you on any yeast killing supplements? do you still have yeast?
is your md a lyme literate one? do you have coinfections?
do you still have the line?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Spindleshanks:
I also had an episode of thrush after stopping the abx and took diflucan for 3 days which my md said was aggressive?
- This does not sound like a knowledgeable LLMD to me... but I could be wrong. 3 days of Diflucan after taking high doses of antibiotics and he says this is aggressive????
Be sure to get on the anti-yeast diet ASAP to avoid continued problems in that area. You don't need TWO major battles.
As for your problems with abx, ask for orals and see how you do.
PS... Were you prescribed Vanco for LYME??
Posted by Spindleshanks (Member # 32556) on :
you got worse on iv abx or after?
I have gotten worse on everything I have tried but thought I was herxing.Then stopped the IV abx and seem to be worse. Now not so sure what was happening.
as far as yeast are you taking probiotics? does your dr have you on any yeast killing supplements? do you still have yeast?
I am on really good probiotics. The thrush in my mouth is gone from the Diflucan but I have really bad acne that cleared for a few day and then just came back so I think it is a bigger issue. I am also taking Grapefruitseed extract.
is your md a lyme literate one? do you have coinfections?
Yes LLMD. So far all that has been mentioned is bart I have all the symptoms and herxed on the byron white and rifampin. No other coinfect test have been done or even mentioned.
do you still have the line? Yes I have a port
Posted by Spindleshanks (Member # 32556) on :
Lymetutu
I will take your advice on the candida.
I am hoping my MD is knowledgeable because I am struggling to keep up with what is going on and really need a more comprehensive plan.
Not just one thing at a time. Or take it as it comes approach doesn't seem to be the way this disease needs to be treated.
Yes I was on the vanco for Lyme because two weeks into the rocephin my liver enzymes went into the 700 and 800s!
My CD 57 is 14
Posted by Spindleshanks (Member # 32556) on :
I have another 3 days of 150mg Diflucan I can take.
I will start asap. I have a crazy amount of those symptons on the list.
Maybe I should ask for a higher dose for a londer period of time? Any suggestions?
Posted by philly78 (Member # 31069) on :
I was on diflucan for two months straight. 3 days is not aggressive. Just be sure to have liver enzymes checked. I stopped the diflucan on my own cause I don't think I need it but I actually have a refill for one more month.
Just letting you know my experience with that.
As someone else already suggested, you may need to start out slow. Some people's bodies are really just not ready to handle some things.
Were you ever on orals or did you just jump right into IV?
Posted by TerryK (Member # 8552) on :
An LLMD has a lot of knowledge that your regular MD does not have. Since you are feeling so bad and currently are not able to sink your teeth into the complexity of the illness, I would recommend that you go to the seeking doctor section and find an ILADS LLMD.
3 days of diflucan is nothing if you have a bad fungal infection.
From what you've written it sounds like you may have difficulty detoxing, possibly some co-infections and yeast too. It is not likely lyme that is making you feel bad after going off abx because it is slow growing. It could be a co-infection though but also sounds like yeast or maybe both.
Hopefully you are on good quality probiotics and adequate minerals. You need a good minerals base to ensure adequate detox.
Hope you feel better soon.
Terry
Posted by Spindleshanks (Member # 32556) on :
Did about a month of olive leaf and colloidal silver on my own while waiting.
I did oral Rifampin and Zithromax for bart and a little lyme from what my doctor said.
Then straight into the IV.
I wanted to because I had been so sick for so many years and was having bad neuro symptoms that was causing me diff working.
When my liver enzymes went up the first time I went off work and we jumped into IV but I just had one thing happen after another.
I am pretty sure I have MRSA as well.
My picc line got infected after only a couple days.
When my port was put in they gave me a dose of vanco to prevent it from getting an infection and I still got cellulitis under it after placement.
The plan was to get on IV hit it hard bring down my bacteria load and get me back to work.
Nothing went as planned and I have had very minimal improvement.
Something is missing. I don't test + for KPU and I don't have chlamydia PNA.
I don't blame my MD I am just so confused.
what mineral supp should I take?
Has anyone tried NTfactor Gold?
Posted by LymeAware (Member # 26195) on :
I'm so sorry you've been having such a rough time. I don't don't know all the specifics of the drugs you've been on, but I agree with Terry regarding detox. The fact that you felt worse after starting the drugs, and then continued to feel worse after stopping could mean that all the toxic die-off is just overloading your system.
I think you've been killing the bugs hard and doing a lot on that front, but wonder if you've also been doing plenty to clear the toxins that are building up? Not detoxing effectively will absolutely increase your symptoms.
Best wishes...
Posted by Spindleshanks (Member # 32556) on :
Thank you. I am going to see an acupuncturist tomorrow and will be discussing detox.
Posted by scorpiogirl (Member # 31907) on :
Yes, I agree w/ Terry as well. When you are on massive amount of IV meds you need to up your detox and immune support as well. The 3 things go hand in hand. If you have more toxins in your body than you can handle, taking more meds would do more damage than good!!
I am currently on two IV antibiotics, and I'm either attached to a Castor oil pack or in the bath soaking in my epsom salt almost daily. I was drinking lemon water too but it totally messed up my teeth (even w/ the straw) so now I have to stop that.
Anyway, I think you will feel a lot better if you can detox. I can't believe your Dr kept you on IV when your liver enzymes were in the 700s!! When mine went to 100ish both my LLMD and my pharmacist put a halt on everything and I had to get my blood work done twice that week. Luckily it went right down after 3 days.
Acupuncture is good for detox too. Good luck!
Posted by Spindleshanks (Member # 32556) on :
Just to clarify I was off all meds until my liver enzymes went back to normal.
Thank you for all the info. I will try and post info from my visit tomorrow.
Posted by scorpiogirl (Member # 31907) on :
Oh ok, phew!
I was going to say what are they trying to do kill you?
I love acupuncture so I hope it will help you. I'm starting PT next week and there is only so many hours in a day so I can't fit acupuncture in yet... perhaps after PT. Enjoy your sessions!
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