help! please give some input

[robfar]

please, any help is appreciated.

was diagnosed with lyme 2 months ago and put on amoxy for 1 month.
was then put on doxy for 5 days but got a rash and i discontinued it. around the time of the rash i began to lose my appetite and this contiued for 10 days with also nausea and chills at night. just feeling sick. the worst was the loss of appetite where food actually looked horrible. my doctor gave me diflucan and i seemed to get better for 2 days when it started again. also i had one day of diarrhea and that was when i felt better.
symptoms began again, still no D just the nausea, night chills, anxiety, and out of it feeling. this lasted 10 days with 2 trips to the ER. blood work normal, iv water and sent home a virus.


finally the symptoms got better and my lyme doc out me on cedax which is a cephosporin, . 10 days into the cedax i started losing my appetite and all the symtoms with it returned with even more anxiety(never been anxious or depressed). this time i had D for about 5 days, mustard yellow and bad smelling. he stopped the cedax and told me to take s. bour. this did seem to help the D but not the nausea and loss of appetite. also started developing cold night sweats and the anxiety is through the roof.

went to a GP he said c diff and put me on flagyl. stool test done before flagyl but not with D came back negative. on my 5th day of flagyl and no change except for the D seems better. had a little last night and no bm today.

my lyme doctor thinks that the gastro and anxiety is being caused by lyme and wants me on zithromycin IV on monday. should i listen to him and do the IV.i feel like i do have lyme psych symptoms and may do it. could the anxiety be causing the D. also just had a brain MRI which came back normal except of spots consitent with neuro lyme pt.s

i tested positive for lyme. does it sound like C DIFF?

[anlockwood]

If you have lymes that can be very serious and is not something to mess around with or second guess. If the dr was 100% sure of diagnosis then I would treat it if it were me. Lyme can have very nasty permanent side effects that aren't worth messing with. You could have had c diff or just antibiotic associated D but it is hard to say. Only time will probably tell now. Do you have an id doc? Sometimes they are the best to consult with when you have a double issue like c diff and lymes. There is a gentleman on here his name is Trob25(I believe) and he is very familiar with Lymes, you might pm him. If you have to treat because you have lymes, you can treat the c diff at the same time if it was c diff or comes back again. Then once you beat the lyme you can focus on the c diff. I am sorry for what you are going through, I know it is not easy. My mom also had lymes.

[monacat]

i had killer anxiety attacks when i was on flagyl(never had them before!!!) so bad i went to emerg. (sacred, heartbeating through the roof, felt like i was having a heart attack, going to pass out ect...)cap this off with a tingling head, thick white tongue and swelling throat. Not a nice experience. i stopped on day 8 of my 10 day dose as i just couldn't handle it anymore. i don't know the med stats per say but i do know that this drug can mess with your nerves (tingling limbs and in my case the top of my head!) so i would imagine that it is all inter-twined. hang in there. Sending you good thoughts and prayers. This forum is a great place for info and support.

[robfar]

thanks. just wondering are my symptoms conducive to c diff?
the loss of appetite being the worst with the anxiety? had the anxiety before the flagyl though it seems worse

[anlockwood]

I don't know about the anxiety. Many people experience anxiety after diagnosis of c diff simply because they become aware of what they are facing. I personally didn't experience anxiety but did after I knew what I had because of fears. As far as loss of appetite that seems to be a huge problem for alot of people with c diff. That was my first symptom. I coulnd't eat anything. Food made me want to gag at the thought of it. I had that for about 5 days before the D started. The loss of appetite continued with the Flagyl. Flagyl is very harsh medicine on your GI tract. I found that once I was off it for awhile things improved. Honestly I just started getting my appetitie back this week and I am 10 months post c diff but that was ok with me because it worked great for weight loss...LOL! Gotta see something positive in my c diff experience.

Amanda

[Nancy1]

robfar,
I too don't know if you have cdiff or not, but here is the official welcome: Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

There are a lot of false negative test results for cdiff. I only had one positive result in my 8 months of cdiff. Cephalosporins are some of the antibiotics most often associated with causing cdiff. So you could possibly have cdiff, even with a negative test result. I hope you don't have it! Good luck. Let us know how it goes.

[trob25]

Hey Rob, I'm a lyme sufferer as well, maybe I can help you out. I had lyme in 2005, cured quickly with two weeks of abx, but relapsed in 2007 and suffered with it through 2008 before it went away. Currently I possibly have it again, with a relapse that may have occurred in mid June.

First off, how long do you think you had lyme before you went on antibiotics? For people with cases that were found with in the first 1-2 months, the typical course of medicine is 2 weeks of Doxy. Amox is only used in special cases, pregnant women, children, and people who don't do well on Doxy. Curious as to why he had you take a month of Amox first, then Doxy?

The IV drip is something I've never had as my lyme specialist said it is only needed in cases of neurological damage, which I've been told, can be seen in the eyes first. I'm not sure what exactly they look for, but if your eyes show the neuro symptoms they give you the IV drip. You say you have psyche symptoms though? If accurate that means you are in Stage 3 lyme and had the disease for a long time before being treated, do you think that is possible?

Now to your C-Diff. My C-diff happened after taking antibiotics for lyme, on and off for a year and a half. You probably did not have C-Diff before taking antibiotics, but after taking them you could have gotten it. One month is a long time followed by 5 days of Doxy. Lyme can cause bowl symptoms in some, it never caused that for me, but everyone is different. There is a chance you are dealing with lyme and C-Diff now, which happens to many lyme suffers after prolonged abx.

Now here is the tricky part. Lyme can cause chills and sweats, stomach/intestinal issues, racing heart at first, then later heart blockages, muscle and joint aches and the later neuro symptoms. C-diff can also cause chills/sweats, stomach issues, racing heart and some get muscle aches after prolonged bouts. Question is, what were your symptoms before going on antibiotics?

The D of course, could be C-diff, I wouldn't be surprised, but you need to try and match lyme symptoms first, then see if you are experiencing something new here.

[robfar]

thanks
my lyme began 2 1/2 months ago . my stomach symptoms started 3 weeks into the amoxy. i was fine before the lyme and antibiotics. the flagyl has done nothing for me(7 days) except no D. the stomach and sweats are still there. i am also mentally like a different person with no motivation or happiness and anxiety. the big thing is NO APPETITE and i used to LOVE TO EAT. SCARED!! supposed to have the IV in tomorrow with zithromycin. my lyme doc seems to think the lyme is neural and affecting my stress wich is affecting my no appetite.

[trob25]

Ok, here is my assessment, keep in mind I'm not a doctor but have dealt with lyme for four years and then C-Diff last year. Lyme does not typically cause stomach issues, it started three weeks into your Amox, that is most likely what caused it. The Antibiotics can wipe out your good intestinal flora and cause C-Diff, this is what may have happened to you, it happened to me, granted after a year of antibiotics, but it happened. Everyone is different.

Here is the thing with Flagyl, it causes nausea and sweats! I had been lyme free for 8 months when I went on Flagyl, it caused me to have sweats, hand pain and stomach upset (a little, some people become violently ill on it, this is an official side effect) that all mimics lyme. I was tested for lyme when these symptoms were happening and the tests came back negative. After I went off the Flagyl for 3-5 days, sweats and hand pain stopped, appetite returned. Flagyl was brutal on my body, weakening me to the point I nearly collapsed one day, I'm not surprised you feel like that. But, if you have C-Diff you have to take it to stop the D, which it sounds like it's doing for you, you need it to stop. C-Diff untreated will kill you.

So if all you had were lyme symptoms without appetite loss before hand, then I think your amox could have caused C-Diff and the Flagyl, while working, can be causing these other side effects. I would be hesitant to go on IV antibiotics so soon because if you have already been treated for lyme for a month, and now are being treated for C-Diff, the C-Diff needs to get under control first before you can assess if you still have lyme and need to be treated further for it. Are you still going to be taking Flagyl when he tries to give you the IV antibiotics tomorrow? That doesn't sound right to me at all.

Keep in mind Lyme symptoms, aches etc. can persist for months after being cured of the disease, my joint pain lasted 6 months after mine was gone then finally it stopped on its own.

Neural damage only occurs if you have had lyme for like a year or more untreated, unless you doc think that's the case, I'm not certain you are at that stage! I don't know what he knows about you though, you might want to ask him "how long do you think I've had lyme?" Because if the answer is 2 months, and you were treated last month, neural damage does not typically occur that fast.

You still need a professional opinion, but if I were you, I would look into getting a second opinion from a lyme specialist if possible. I just can't believe that they are treating you for C-diff right now, and while he's doing that, he wants to put you on IV antibiotics!

Keep in mind, some docs use flagyl to treat lyme as well, Flagyl busts the lyme cysts. It's a tough call to make, and again, I am not a doctor, but I would recommend you try and seek a second opinion.

[robfar]

hi
thanks again for the advice. my doctor is a llmd. i went to a gastro guy when i got the D and he put me on flagyl. saying that is probably the stomach trouble. i am to stop the flagyl today as the zithro is tomorrow.
i am so lost as what to do as i was fine up to 2.5 months ago when the intial lyme symptons started. if it is the lyme then i am wasting time if it isn't then i could make it worse with the zithro. my life is so messed up right now and i can't believe it. it is like a bad dream. would c diff symtoms cause

such unhappiness and un motivated feeling in someone,
no appetite,
chills,
nausea at times,
night sweats
anxiety

[robfar]

also he thinks i probably have bartonella because i have gotten rashes and the symptoms match with the neural stuff. also, bartonella is very prevalent in nj.

[Vikingjeff28]

I had C diff twice followed by Colitis for 6 months, lost 30 pounds. My wife was scared because she saw me trans form from a man who worked out 6 days a week to a guy who did not want to leave the hospital(because of pain) and then laid on the couch for months in agony. No motivation, just wanted to die at times. I UNDERSTAND completely. I also collected about 5 more problems from my immune system breaking down. I finally made up my mind to attack one problem at a time and just go from there. Slowly, I made my way back. I have gained all weight back and am working out 6 days a week again. ONE DAY at a time, stay as positive as you can. Try not to look at tomorrow but the next hour, how you can make it rewarding. I pray for you, you will get through it!!

[robfar]

thanks
i guess i will try the lyme iv tomorrow and if the d comes back i will deal with it. my wife is convinced it is the lyme and so is the lyme doctor. i am torn but need to make a choice as i kind of recognise the lyme mental symptoms(though this is 10x worse) from a prior bout with it, but i never had the loss of appetite, sweats etc..
thanks for the imput and prayers