I have been treating for 2.5 years straight...orals the entire time, three different LLMDs, and a 7-month bout with IV. I now have the PICC line again. 'Started with vanco, but had to switch to IV doxy now due to the vanco plummeting my white blood cell count. I'm still on orals too. I was on the vanco for three weeks, took a week off to check blood levels and now have been on the doxy for three weeks so far.
I have a few questions for anyone who has felt that IV was the turning point for you in treatment:
1. Was it gradual steady improvement?
2. How long did it take before you started to see/notice improvement?
3. Did the IV help you to turn the corner, even after long-term consistent orals and/or a prior bout with IV caused limited to no improvement?
4. Which IV drug helped you the most?
5. Which symptoms abated with IV treatment, that were left untouched by orals?
Thanks!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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gmb
Unregistered
posted
I started orals ABX in March 2010, then switch LLMD in March 2011 and continued orals, but a bit more aggressive protocol and addresses Babs and Bart.
IV Rocephin was started last December. Then added back a variety of orals (Zith, Mepron, Bactrim)over time. My biggest issues I believe is the Babs and I have been at a plateau level (no better no worse) for a few months
I just add TindaMax on Monday. I hope this will be the key to put Lyme down and then see what to do with the stubborn Babs.
For me the IV has been gradual improvements, but no magic bullet. Most all joint pain and stiffness is gone, and only neuro stuff remains and it fluctuates.
But the head pressure and brain fog could be Babs, Lyme, Candida, and/or parasites.
I wish I could help more... Most folks who have gotten better with IV's have moved on with their lives and seldom visit.
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posted
I did oral ABX for 3.5 years and tried every one. I have to say the MAGICAL oral for me was Ceftin.. Ceftin took away my burning nerve pain, skin sensitivity. My physical body pain, like deep bone pain is the worst thing i've ever felt. I do have to say that I felt like the picc line IV ABX that I did also helped kick it in the rear. I did Claforan as well for the picc line and was on it for 5 months. But I've developed just a few mysterious heart problems. Early on I had blood clots just show up out of the blue, which no Dr. could understand, that nearly killed me.. that was before I was tested for Lyme.. and then during the picc line, my body was on it's way to having a heart attack, I was sitting doing nothing.. had my feet up, typing on computer and felt crushing pain in chest and back, jaw pain, shoulder pain, no pain down the arm.. but ended up in ER with Triponin levels high as if there had been a cardiac event.. My LLMD pretty much demanded that they pull the picc line after that, since blood work had proven that I have a genetic blood clotting disorder, so he doesn't want me to have picc line ever again. So I am now back on Injections, but have switched to Rocephin, which is working good.. but I just cannot get rid of the deep bone pain....I wear Fentanyl patches 225 mcg..which is the only way that I'm getting thru my life right now.. along with God's help! I would say the only symptoms that have hung on are the drunken fatigue, new symptoms are chest pain, rib pain and bone pain, which proves to me that the enemy has gone deeper into my bones.. One thing that helps me greatly with pain and with blood is to take the original Alka Seltzer, and the amount of aspirin in there really helps, Advil Liqui-Gels, hot showers and bath, Rife machine, Infra-Red Jade mattress, to sleep on it..
I don't think I've ever heard of Vanco, is that short for Vancomycin? I too, have felt like I've had gradual improvements, but not sure if there is a magic bullet. I don't have a lot of neuro stuff, do have lots of headaches, leg pain, arm pain, back pain.. and just all over deep bone pain.
Unlike what the last person said,.. I do know plenty of folks who have done IV's that have gotten better, but have NOT moved on with their lives to where it feels like it never existed for them.. they are still struggling..
One thing to remember, if you are female, like I am, we have to remember that our mentrual cycle effects us, and we tend to have waves of pain that come and go depending on that cycle.. also the full moon, or barometric pressure has it's effect as well..
There's no easy answer, but staying as positive as you can, continually praying for God's intervention and relief are vital.. having a great support system of others that are walking this out with you, praying for you.. having church group praying for you... stay close to God and He will be close to you... blessings!
Posts: 120 | From nashville, TN | Registered: Nov 2008
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posted
Hubby has had picc since last December. Tried all different IV Meds. For one reason or another, they haven't worked. They would start to work and he'd either have an allergic reaction or just plain plateau on it. He also did Vanco. Rocephan, Claforan (allergic reaction). Starting IV Levaquin tomorrow. Makes me nervous with what I read about tendonitis. But maybe this will be "the one". Good luck to you
Posts: 305 | From United States | Registered: Nov 2011
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posted
I had great improvements with the picc and Rocephin. That was after 5 months of orals that I had improved but then plateau'd on.
I started out getting worse and worse after I got the picc in, to my worst ever about 6 weeks later. Then we added in some malerone, I had a horrendous night, and suddenly things improved greatly.
The picc is out now, but I still have some lingering issues - joint pain and headaches mostly, although they are better than they were. Just on herbals at the moment.
Good luck!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son started IV Rocoephin after only 3 month of orals because of congenital Lyme and the severity. He improved a lot over 9 months. It was about month 3 that we really started to see things improve. His frozen stomach started working, his nausea was gone, body pain improved, neurological issues improved and bi-polar type stuff disappeared. He was able to get back to school.
Wish we had done IV Rocephin longer. He is now trying bicillin shots to clear last remaining stuff. He doesn't want to be a senior with a PICC.
Good luck to you. Stay positive.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
My DD was on IV's for 16 months. She had some improvement in the first six months but not as much after that. I feel like the Rocephin is what was helping her the most. She had to switch to Clafaron after five months because of gallbladder issues. We had to take out her line due to blood clots.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I started oral treatment in Nov. 2011. No improvements at all after several months.
Had port put in Feb. 2012 and started Rocephin. At about the third month I noticed slow steady improvement with less pain. I crashed about two months later.
Changed orals and IV after the crash and went on IV Clindamycin which I feel made a huge difference. For orals, I take cipro, ceftin, flagyl-two weeks on and two weeks off plus arteminisin 4 days a week.
I am slowly getting better, pain is much less and I am seeing a difference in my gut problems. I am diligent with probiotics and use garlic capsules to avoid candida.
My LLMD says that what you should see when doing any treatment is slow and steady improvement.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Had lyme for 7 years, started orals aug 2011 with great results within 8 weeks but crashed after 2 months. Treated for babs in march. 3 weeks in, herxed like crazy for a week then developed severe tinnitus and pressure. Quit everything, went natural. Got Worse so started pulse iv Rocephin 6 weeks ago. 3rd week got Major herx 103 temp. Have had couple days feel ok, bad leg pain gone but neuro still pretty bad. Anyone dealing with depersonalization? Good luck all
Posts: 2 | From minnesota | Registered: Nov 2012
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posted
Had lyme for 7 years, started orals aug 2011 with great results within 8 weeks but crashed after 2 months. Treated for babs in march. 3 weeks in, herxed like crazy for a week then developed severe tinnitus and pressure. Quit everything, went natural. Got Worse so started pulse iv Rocephin 6 weeks ago. 3rd week got Major herx 103 temp. Have had couple days feel ok, bad leg pain gone but neuro still pretty bad. Anyone dealing with depersonalization? Good luck all
Posts: 2 | From minnesota | Registered: Nov 2012
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I've been on IV antibiotics for nearly a year and a half. I started on IV rocephin, but had an allergic reaction after 3 months, have been on IV azithromyocin since. I have made great gains on IV meds (oral meds for 2 years only slowed the progression of my symptoms), but it took 7 or 8 months to feel like I was rounding the corner. I had ALS type presentation with muscle fasciculations (involuntary contractions), muscle atrophy, weight loss and progressive weakness, along with hypotension, nausea, fatigue, low respiratory rate, etc.... Most days I feel 90% or better, I really think, as Dr. Burrascano mentions in his protocols, if it's chronic with neurological presentation, IV is needed to cross the blood brain barrier.....
Posts: 143 | From Louisville KY | Registered: May 2010
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posted
Just wanted to add, that I have done either Flagyl or Tindamax along with IV azith for cyst form, etc.....as well as cycling samento and banderol when not pulsing Tindamax.
Posts: 143 | From Louisville KY | Registered: May 2010
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posted
My LLMD said to look for improvement around 3 months time on IV. If you don't improve soon, might be you need to look at other orals you might be taking.
You might need to tweak something, or a coinfection you are not treating is in the way of getting improvement.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I certainly can't say with certainty, but after all this time if none of these meds dented your issues, I'd seriously start to consider it's not Lyme/TBIs as the real culprit. I know they are said to be persistent, but at some point, you have to open the box and look at more. You've taken tons of stuff. I hope your doc has looked outside the Lyme box too. Best of luck. You deserve a break after all this.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I noticed some changes right at the three month mark on IV Rocephin. Small changes, but noticeable.
I can process more than one voice at a time now, until three weeks ago I couldn't talk to my wife if the TV was on, the dogs were barking, or my kids were arguing. There's gotta be a wife joke in here somewhere.......but when she talked all I heard was noise.
Posts: 99 | From Cali | Registered: Dec 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
triathletelymie - have you ever checked your house for mold? ERMI test or air test?
My son had no improvement on IV rocephin... WBC plummeted and liver enzymes skyrocketed. Found out we had toxic mold in the house. Couldn't see it or smell it... only way to know is to test $150-$180 for testing.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My first time on Iv rocephin, took me 6 months for clarity, depersonalization gone. It took another four months for rest of
symptoms to be dormant ( joint pain, heart palps). Rocephin and Iv Zithromax 3x a week. Stayed on orals till I crashed
(ceftin, zithro and tindamax combo). Did this for 6 years on and off until the routine got old and antibiotics didn't do
anything. Now doing a mix of Byron white herbs and ondamed. Some improvement, just takes a long time.
Everybody is so different with this, it's so frustrating. Had my gallbladder out from gallstones from rocephin. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Everyone is going to react differently from the next on any orals or IV. Although IV turned me around in a short time very slowly, some may take longer.
As it was said before in many posts, Lyme is not a cookie cutter approach. There are so many variables that can affect treatment. We know mold, metals, coinfections are just a few things that complicate treatment.
I know patience is not something we all have when we feel so sick, but it takes time for abx to work with all these other forces in play.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
1. Every time I've been on IV, I seemed to get a very quick boost, followed by much smaller but still steady improvements.
2. The first time I went on IV Rocephin, my joint pain was gone in the first two weeks. I usually notice a pretty big improvement within the first month, followed by much smaller gains.
3. I've generally done better on IV than orals. I did orals this last run for nearly a year before going back to IV, and had seen almost no improvement with the orals. I seem to need that to knock down the majority of the bacteria.
4. I've only been on Rocephin and Zithromax (had a bad reaction to Vanco also). I've found them both really helpful, but for different symptoms. The Rocephin seemed especially helpful with the joint pain, the Zith with pretty much everything else.
5. Join pain, and neurological symptoms were much improved on IV after not seeing much progress on orals. NOTHING seems to be handling the crazy fatigue, though.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
My daughter was diagnosed in Feb 2010. She was bitten by a tick in 1998. She tested positive for Lyme, Erlichea and Bartonella. Her Babesia tests were negative, however she was clinically diagnosed with Babs.
With orals she saw some improvement, the best combo being doxy and Mepron. However, 9 months in she started getting terrible GI issues and had a difficult time tolerating anything including food.
She tried for 2 years doing every oral combo under the sun but because of GI issues she could never get enough in her to make a difference.
Last December (2011) she began the Dr K protocol and we worked on healing her gut. Once that got better they began to target infection with natural supplements. She improved for a few months, then ended up back in bed as sick as she was when we started this journey.
In late August she had a central line placed and began IV. Her dr pulses the meds. She only infuses 3 days a week, and also pulses orals. On non treatment days she infuses Lactated ringers which really help with the herx symptoms and inflammation..
This approach works for her and the pulsing allows her body to heal. Her general cycle is 2 weeks on abx 1 week off, and so on. She has also been on many different IV drugs and orals.
So in 4 months she has been pulsing IV Zith, merrepenem, clythrimycin and coffin. The doses are high. She is also on Bactrim DS, Flagyl and Mepron.
Now the good news. She is getting better! I would say that at the three month mark we really began to notice improvement. Now her breaks are 2 weeks off to see how well she does. The goal is to get her immune system to wake up and start fighting the infection. Each break she has some good days and the. Crashes. The good days are lasting longer, and its longer before she crashes.
Her Dr anticipates that she is at the half way mark with IV. All I know is the girl who couldn't get out of bed most days is now in school, planning for college and is out of bed more days than in. I believe that it takes time, but for her, the key is pulsing and rotating drugs.
Best wishes!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Had mis/un diagnosed lyme bab erlich for over 20yrs( not sure how long i had co infections) finally found llmd started meprin and azith then onto iv for 5 months... it has been 8 yrs I am definitely better!!! saved my life.. tweaks along the way with antibiotics .... eating well. no sugar.. reduce stress... push yourself to be active.. vitamins really help good luck God Bless!
Posts: 7 | From new jersey new york | Registered: Jan 2010
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Unsure...nope, no changes for me yet, actually a little worst brain-wise maybe.
Due to lack of improvement, my LLMD (the famed Dr. H in NY), is opting to take me off of all antibiotics, both oral and IV for a week or two to focus on heavy detox. I'm not buying into that, but I'm gonna try it. My guess is that I'll be back on the meds within two weeks.
Ugh...
Anyone else?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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I feel for you, my symptoms are all neuro as well. I'm just a little "ahead" of you as far as tx, dx'd in 2008.
For me, 2.5 years of multiple, high-dose orals, then 11 months of IV. I am still searching for wellness. I hope you see benefit/improvement with detoxing.
I only say this because, where have the meds gotten you? Maybe give thought to that.
For me, after 3.5 years combined, orals and IV, I finally had to question, "If nothing has changed in this amount of time, why would it change now?" Each new abx/med, I would hope THIS would be "the one." Unfortunately, that never really happened.
I think there's every reason to remain hopeful; but maybe looking outside of the abx box is what you'll have to do, as it appears your LLMD is doing; that's not necessarily a bad thing. Just my 2 cents. Sure hope you see improvement. Good luck. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
I would like to suggest infusing Lactated Ringers in-between abx. They really help with detoxing and herx. Really help!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hey Tri
Maybe your body could use a rest like Dr h suggests. Perhaps you could focus on making sure you are taking in enough vitamins and minerals, especially calcium and vitamin d and magnesium....those drugs can be harsh on your body...
What r your residual symptoms?
Posts: 1155 | From Southeast | Registered: Oct 2005
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Katie, You hit a Home Run! The rabbit analogy is perfect! That's why I asked my husband to tell me what is better after 6 months on IVRocephan+Biaxin. I still spend too much time in bed, tremble and stammer when tired, etc. So I tend to think I'm not improving.
He, on the other hand, says "You're more agitated than ever, probably because you can think better and feel frustrated. Your mind is working better and overall you ARE improving!"
Foolish me, I thought I was just grumpy from being in bed too much. The fatigue is overwhelming. If I get up and do things I start to tremble, sweat, hurt, my glands swell and I get hoarse. So it's back to bed. Rats!!! And my memory loss is a family joke. It is really bad!
I do have 3 or 4 days at a time of terrible herxing when I need to be close to a bathroom. I sometimes run a fever and feel absolutely awful. But then it gets better. I think that may be when the miserable little bugs are dying off.
I was on Vancomycin IV's 2xday for 6 wks in hospitl for septacemia. Talk about herxing! It was unbelievable! Docs thought it was just a normal reaction to the abx. Even got a rash all over my body. And no doc thought to test for Lyme. Brain dead doctors.
When I no longer needed a wheelchair or oxygen after more than 10 years of being totally bedridden with "CFS" they called it "a miracle" that I was walking, playing the piano, etc. It was my husband who realized what was happening when I began to relapse the following year. He demanded a test, found Lyme Disease (we had never heard of it) and the idiot IDS said it was probably wrong and he refused to treat me.
So we found our LLMD and I've been on abx pills, shots, IVs for nearly 3 years. He warned me it would be a long haul. Old medical records showed the rash, joint pain and fatigue in 1984! I continued to work and tough it out for 4 more years until I totally collapsed.
I think "roller coaster" is right because herxing is sporadic. But sometimes I wonder if I will ever know what it is like to feel healthy again.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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