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scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/15/2009 7:50 PM (GMT -6)   
Has anyone been on IV Doxy and if so what can I expect other than the typical herxes, not that a herx can ever really be called typical.  lol  I've been on so many different meds and experienced so many strange things but the one thing I'm dreading most is the return of severe bouts of depression and mood swings.
 
Any suggestions, tips or words of advice re IV Doxy would be greatly appreciated.
 
I was diagnosed in February by one of the top llmds and have been on IV Rocephin, Mepron, Zithro, Mino, Art, among other meds and many supplements since February/March 2009.  I have not made the progress on these meds that was hoped for and he has taken me off these antibiotics and tomorrow I'll be starting IV Doxycycline 2 x day. 

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 10/19/2009 12:27 PM (GMT -6)   
My friend was on IV Doxy and didn't notice any amazing improvement over oral. Have you had any luck? My advice is to stay on Babesial treatment and consider IV Clindamycin or Claforan- both have really helped me and I pulse in Bactrim and Flagyl. Clindamycin appears to cover anaerobic strains of Lyme/ Claforan hits Lyme and Bart. If you are not improving move on, that's what I believe.Babesia is the lynch pin if you ask me- it is the harest to eradicate and drags us down.

Dr J (SC) first uses IV Clindamycin on anyone failing other treatments ......he has some very good info on his website about this. I am doing really well on his protocol. Mostly functional again after 3 weeks.
Grew up on Cape Cod with Lyme... (TB aged 12 so did 2 yrs antibiotics as a kid). Weak immune system lifelong-self diagnosed Lyme 2003. Treated successfully with Cowden herbs until rebit 2007. Babs, Bart and Lyme treatments- currently using IV Clindamycin/Azithromycin and oral Mepron, Bactrim and Flagy- pulsed therapy.


Cmacaran
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 10/19/2009 1:22 PM (GMT -6)   
Myself and my friend both started IV Doxy two months ago. Our herx varied in intensity. Hers was worse. We both have CNS lyme, and I also have moderate brain encephalitis. Anyhow, the herx for us both was pressure headaches all over, she had neck pain (I didn't), she had eye pain (I didn't), I had about 4 migraines the first month and still have constant headaches but after 6 weeks they aren't really so bad any more, I function fine. My head felt made of lead and 4 times its size for 6 weeks. I was in bed for 6 weeks, and also very dizzy.

I hate to tell you that it was the worst herx I ever had, but it was. However, I do believe my brain infection was also at the worst point it had ever been, so that makes sense. If you don't have Central Nevous System lyme you might not herx like this, I think the doxy if very good with brain and nerve infections. I have lyme, bartonella and babesia. The Doxy is for the lyme and bart, I take 2 malaron a day for the babesia and nystatin. I take Silphos to protect my liver and various vitamins when my stomach feels good enough. I tried sauna and it was a nightmare combo for me. I don't recommend you sauna on IV doxy, but I could have just had a weird unique reaction.

Anyhow, thankfully the worse is now over for both of us. Niether of us have been able to acheive the top theraputic dosage due to our herxes. I have gotten up to 100 mg twice a day and think I will slowly be able to hit 200 twice a day. The key for us both to surviving the herx was to cut back the dosage and go up slower, I even skipped two days here or there just to ease the pain. Other side effects I had were dry mouth and overall dryness. Brain fog. My mood was suppressed but not as crazy as it had been earlier so mood wasn't really the focus of the herx, it was headaches. I wish you the best of luck with the IV Doxy. It has made my life better after 2 months, but the first 6 weeks were tough.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/19/2009 6:30 PM (GMT -6)   
Hi Pcpc, I'm so glad you're doing well. It must feel great to be functional and I hope it continues for you.

You were kind enough to respond to my posts before and did discuss the meds you suggested and others with the doc. Right now he wants me to give the iv doxy a try starting at 100 mg 2 x day, I think. He is always willing to listen to suggestions and gives reasons for his decisions but I can't always remember what those reasons are. lol I did six months of iv rocephin which did result in significant improvement on the SPECT scan but unfortunately I don't feel significant improvement yet, although many little things have improved. I have been herxing with the doxy so hopefully that's a good sign.

I'm going to check out Dr. J's website. Thanks.

Cmacaran, Thanks for responding. I wish you and your sister all the best and am glad the worst is over for both of you. I've been herxing but it's not unbearable, not yet anyway. lol

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/19/2009 7:02 PM (GMT -6)   
Pcpc, I checked out Dr. J's website as you suggested and plan on printing out the portion re IV clindamycin. Now I am not positive my doc and I discussed this particular med but I will ask him at my next appointment. I think we did but I can't find my notes. lol Thanks again for the information.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/21/2009 12:00 AM (GMT -6)   
Cmacaran, I'm sorry. I meant to refer to "you and your friend" in my reply, not "sister". Obviously, I still have major brain fog so please excuse my many mistakes. It's even worse when I speak. lol

I'm sorry both you and your friend have LD but at least you don't have to go it alone. Do you have any idea how long your doc wants you to be on iv doxy?

Kristiana
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 10/21/2009 10:53 PM (GMT -6)   
Hi Scorpio1960,
I also see Dr. J. (in S.C. til he moves to D.C.) He is an AMAZING doctor! I fly to see him but wouldn't have it any other way because I wasted so much time seeing a doctor that was just 1 1/2 hours away. My braini SPECT scan just kept getting worse and the doc I WAS seeing, didn't see anything wrong with it. YIKES! I knew I needed to switch to something more aggressive. Most of my Lyme is neurological and wow, you should see the words I come up with while trying to find the "right" word! My mom says she will have a separate dictionary for me - she's very sweet and tries to make me laugh when I get down.

Well the reason for me writing is that I have trouble with depression and when I was just on Tetracycline for a year with the other doc, my depression got extremely bad - like my brain was being blocked by the Lyme and nothing was letting the antidressants through - a real Lyme block! IT wasn't until I had IV Rocephin that my head finally started to clear up a little. Too bad the doc didn't put me on Actigall or Ursodiol to prevent my gallbladder from collapsing from the Rocephin - oh well, I had to go off of that because of my gallbladder attacks. BUT, just like you saw on Dr. J.s website, Clindamycin has been a HUGE new effective IV med for Lymies like us who have the Lyme in our brain. It breaks through the Blood-Brain-Barrier and goes after those nasty little spirochetes that are inflaming everything they can. I've only had ONE treatment and already I feel less tired and more clear-headed. Better than anything I've had in over 2 years! I'm hoping that will continue with the treatment plan. But what I really wanted to tell you about is a prescription med called DEPLIN - I had to search for it on Yahoo. Dr. J. prescribed it for me because it boosts the antidepressant meds and so far, no one has had a negative complaint about it. They make it sound like a miracle pill - however, it's actually some type of neurotransmitter that breaks down folic acid and helps the serotonin, dopamine, and norepinephrine. My psychiatrist called today and gave me the "go ahead" to try it. There's no harm in trying it, he said. So, as soon as my pharmacy gets it in stock, I'm going to try it. I'll let you know if it helps. I can't afford to let the Lyme block my antidepressants again! And this is supposed to not only improve mood, but also increase energy and lessen anxiety! Certain people can't break down Folic Acid and would need 66 doses of 833mg of Folic Acid to get the same benefit of this prescription "vitamin/mineral/med?"
Hope this is helpful - sorry so long!!!!
Kristiana

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 10/21/2009 11:31 PM (GMT -6)   
Kristiana, Thank you so much for all the information. I find it to all be very helpful. lol I'm sorry for what you've been through but glad you're finally seeing results. Hopefully, it will just continue to get better for you. Please keep us updated.

Thankfully, I'm not experiencing the horrible depression with the IV Doxy that I did when I first started the IV Rocephin. It would come in sudden severe bouts and I was afraid I would go throught that again with the Doxy but don't seem to be. My llmd couldn't believe how many other doctors dismissed the brain scans that showed severe abnormalities. Definitely going to ask him about the clindamycin at my next appointment.

Hang in there and thanks again.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/22/2009 12:08 AM (GMT -6)   
Hey guys:) Thanks for the information. I'm going to be starting IV Rocephin in a few weeks so the clindamycin information is very helpful. I will talk with my doctor about clindamycin if Rocephin doesn't help.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Cmacaran
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 10/24/2009 8:00 PM (GMT -6)   
I have been on IV Doxy for 7 or 8 weeks now and it just really started to help. I expect to be on it until I have a crisis of some sort (lose the PICC line, start getting side effects, whatever) or until my major symptoms resolve and I get back to work. Who knows how long that will be. I optimistically feel like I have about a two months to go, but I could be too optimistic. Orals have never cured me of symptoms they only slowed my decline. IV's have improved my health but I relapse as soon as I am off them, so I have no real answers.

CatDuck
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 10/24/2009 10:55 PM (GMT -6)   
Scorpio, the last IV I did was doxy and it changed my quality of life. I knew after about 3 days that there was a substantial dif. I was probably lucky with that but I think it was one of those hit or miss things that are typical with Lyme treatments. I think everyone needs to just try the options available to see what will kill the buggers for them. Hope it works for you as it did for me.
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