I am the concerned mother of a 16 yr old Boy who has lyme disease and has had a positive western blot. He is on oral antibiotics and we see slow progress. However he is also having regular headaches, fogginess, difficulty with concentration and with focusing (eyes) and our Dr. is considering IV antibiotics. Has anyone out there seen a significant improvement with IV meds vs oral antibiotics? He had a tick bite last April, but did not show symptoms (flu etc..) until August. He has been on oral antibiotics for approx 3 months.
Posted by MysteryGirl44 (Member # 10201) on :
Hi! Even though there are a lot of risks of taking IV antibiotics, I have heard of a lot of success with it. It can pass the blood-brain barrier, which helps with neurological difficulties and in general is usually stronger. It also tends to be easier on the stomach. Good luck! Posted by sfcharm (Member # 9392) on :
I have been on Rocephin IV for almost nine months. I was probably back to 60% prior to the Rocephin IV. I'm now at 90% and hope to make it too one year.
I did orals for the first year and that is what got me back to 60%. I would personally recommend the Rocephin IV especially if neuro symptoms are involved.
I'm not a Dr. and that's ultimately who you need to make the decision with.
I had severe neuro symptoms (seizures,myoclonus). The seizures have resolved but I do have some myoclonus still.
Hope this helps.
Barb
Posted by Noni (Member # 15169) on :
Thank you so much for the helpful information!
Posted by justag (Member # 11145) on :
Is there any particular IV abx good for cognitive issues and brain fog? I guess I'm asking if there's any drug that can make me feel more responsive and smarter?
I've been have IV Rocepin (2g) + IV Zithromax (500mg) for almost three months, but didn't see much improvement. I don't have seisures.
Posted by Neil M Martin (Member # 2357) on :
From 6/99 to 7/03 I had three long term courses of IV antibiotics: Rocephin, Claforan, Zithromax (azithromycin) and finally Flagyl (metronidazole).
These greatly reduced my cognitive problems, muscle weakness and fatigue. Prior to Lyme treatment my physicians diagnosed CIDP and treated me with multiple courses of IVIG.
I do not recall benefit from oral antibiotics I took 2/99 to 5/99 but since 7/03 my strength and stamina have improved steadily on oral abx alone. Some days are better than others but my relapses are less pronounced, the paralysis and seizures are gone & good days are more frequent.
There are also reports of children benefitted by IV immune globulin for LD. IVIG may boost the immune system as it battles bugs.
I am not a physician. My experience is not advice. You need a good Lyme pedriatrician.
Posted by METALLlC BLUE (Member # 6628) on :
Depends on which IV antibiotic you use. IV R has a high rate of relapse, though has helped alot of people. IV Vanco on the other hand is much more potent, but also a bit more dangerous and requires a central PICC or more -- also few doctors would be willing to use it as anything but a last resort. Personally, I think with debilitating Lyme, it should be a first resort as long as the patient is monitored at least a couple times weekly, and a doctor or nurse specifically handles each PICC infusion. The risk of line sepsis is too great with PICC lines for me to feel comfortable recommending laymen do their own. IV R doesn't require a PICC which makes it the more likely choice, but it's also got side effects and Lyme patients in particular are susceptible to Gallbladder ailments. Medications can be given in advance for slowing or decreasing the probability of gallbladder issues, but most physicians don't consider them. You "should" consider them if you go that route. You may also wish to follow IV R with an oral antibiotic like Tetracycline. Other IV options exist, but are less effective in later stages, but aren't entirely off the table as possibilities. IV Doxy, IV Zithro, etc.
Personally, if one oral therapy doesn't work, I say switch and switch some more before turning to the IV. Tetracycline is the most effective of the cyclines overall, with Minocycline in combination with Zithromax, or Biaxen and Plaquenil packing a punch. Biaxen/Plaquenil alone packs a punch for a lot of patients. If co-infections are involved, like Bartonella or Babesia, typical antibiotics used for Lyme will be unlikely to be effective as Bartonella requires different antibiotic therapy like Levaquin, Rifampin, or even Rifabuten in combination occasionally with other drugs. Bactrim is another that packs a punch, but can be harsh, but perhaps not as harsh as Levaquin, which is highly toxic, but highly effective. It's one of the tough antibiotics that should be monitored carefully by the patient, especially constant attention to ligament and tendon issues, as well as Neurological toxicity. The cillin family, Amox, Pen, are useful while drugs in the Sporn family like Ceftin and derivitives can be very useful -- IV R is in that family too.
Combination therapy is most useful, going with the drugs that have the least risk early on to start, then increasing riskier meds as you go, until you reach a risk level that is equal to IV.
Some herbal therapies are also effective in conjunction with antibiotic therapy, but you would need to do your homework on which weapons to choose. Some basics are Samentto, Cumanda, etc. Nutramedix seems to get a lot of attenion. I'm not associated with them financially, but as a consumer, I know the Burbur for detox during Herxheimer reactions is effective, and I know the Samentto was effective. There are many more options through them, or other quality manufactures. If you went with any type of herb, be sure to research the company carefully, a good rep and high quality product is important, as most companies do not standarize or particularly care about the quality since the FDA isn't riding their backside.
My opinion is to always start with antibiotics, and while working with a medical doctor who understands Lyme disease in depth or LLMD, then can guide you if you chose supplements or to later go a different route should antibiotics not be entirely successful.
I'm personally going the Rife route shortly. I've been on antibiotics for 6 years, both IV, and orally. There was a period where I did IV Vanco, Bactrim, and Levaquin all within a month of each other - and I don't know which was responsible, but I dramatically improved. It didn't last of course, over two years the progress gradually slumped a little, but I maintained it with orals as best as I could.
Remember, testing is important: Igenex, Bowen, Stonybrook (Most credible but not necessarily most accurate), and Fry, as well as a few stragglers like MDL. Even Labcorp has it's place but only for the Stricker CD57 test, as far as I know. These are just a few. Testing can be expensive so choose which you get carefully -- if you get them at all.
With a positive test already, that won't mean much after 4-6 weeks of antibiotic treatment. The only one who would care would be an lyme literate physician, but anyone else will simply claim "cured" -- and you'd be screwed since the boy would remain positive anyway in many cases, thus testing positive again even if the infection were gone (That's their logic)
This is just some extra information. I'm not a doctor, just another patient passing on what I've heard from other patients, experienced myself, or heard or read from other doctors.
Posted by Noni (Member # 15169) on :
I really appreciate your detailed reply!
Posted by daise (Member # 13622) on :
Hi Noni,
I'm sorry your 16 year old son got Lyme.
But on the other hand, wow, you got him diagnosed fast, compared to most others.
He's had signs and symptoms about 7 months.
If your doctor is considering IV, well, IV Rocephen certainly helped me with cognitive problems, exhaustion and arthritis. Also muscle pain.
6 months of it (pulsing 4 days a week, three days off) put a big dent in my Lyme germ load.
It's disgusting how long it takes to heal, huh?
I wish him and you the best!
daise Posted by daise (Member # 13622) on :
Hi justag,
My first three months of IV Rocephen: after 4 weeks I herxed constantly for about 2 months, had a 1 or 2 day break and then right back to herxing.
The herxes had overlapped. Then they got shorter. In between I noticed improvement!
It just takes time, so stay with it.
Guess what? Rocephen made me more responsive and smarter. Ya. How about that!
I know the misery of Rocephen herxes. The saying, "hang-in there" is true.
After 6 months I went immediatly to LA Bicillin shots, which were also wonderful--after each intense, long herx!
daise Posted by CraigC (Member # 13732) on :
"I do not recall benefit from oral antibiotics I took 2/99 to 5/99"
Three months of orals isn't very long. It might just be that you didn't give it long enough, or the right combination wasn't tried.
Posted by listenswithcare (Member # 10719) on :
I agree that 3 months on orals is not very long and it may be the combination that is being used.
I used IV Rocephin for 5 months after I had relapsed after treatment with orals and bicillin. Rocephin gave me my brain back, I can now think and read again! I didn't get a whole lot in terms of energy, so it was mostly the brain fog, heart palpitations, lyme rage that was helped.
My doctor switched me to Bicillin LA injections right after stopping the Rocephin (and continued the orals I was on at the time). This is to prevent an immediate relapse after stopping the Rocephin. It did prevent that. So far, so good. I've been on Bicillin for 7 months now and will stay on until I am not cycling anymore for 2 months.
Robin
Posted by daise (Member # 13622) on :
listens with care,
You wrote: "Rocephin gave me my brain back, I can now think and read again!"
I know exactly what you mean. Oh ya!
10 months of LA Bicillin shots gave me a lot of my energy back, and other pluses. (Plus biaxin, later pulsing that and pulsing flagyl.)
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