posted
I use stephania root - an extract that I make myself. It keeps the headaches away but I am still sick.
Posts: 258 | From Spokane, WA | Registered: Oct 2008
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I don't know the answer to your question, but willshare how my husband's LLMD approached the IV question.
My husband had been on various orals for about 3 years. He had improved, but his most troublesome symptoms continued to be neuro--cognitive in particular (working memory, cognitive stamina, ability to read, "frontal lobe" stuff--attention, planning).
His LLMD has now put him on IV to try to get at this "brain stuff" more directly. He's done 3 months of Rocephin, and has just started Doxy (thought to hit Lyme as well as bart).
He has noticed improvement in his cognitive functioning in ways that the orals did not provide. He's certainly not 100%, but he's able to read, and is planning to begin a career retraining class (he was a professor whose career was completely derailed by Lyme).
Anyway, just one person's experience, still ongoing, but hope it helps.
Best regards, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
I think kayak is wondering if we can indeed get rid of neuro stuff even WITH IV.
I think........
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I have been fairly successful with long-term oral abx and IM bicillin for lyme and neuro symptoms.
Surprisingly, some long standing neuro symptoms really began to improve with mepron and zith. I am sure your llmd will assess your need for treatment for babesia and co-infections as well as lyme.
I think it can be done without IV, but it may be quicker with IV. If I could have done months of rocephin I would have, but I was not in the position to do IV for a number of reasons.
Posts: 2557 | From home | Registered: Aug 2006
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
i agree, Lymetoo. And I think a lot of people are wondering about just these 2 things. 'Getting RID of this thing', whether with pills or IV. I sure as heck know I am!
My SUSPICION is that many remaining neuro symtoms are there due to lingering B.B. activity- along with your own immune system's response in trying to get AT it- in the neural cells & nerve bundles and parts of the brain.
I was recently reviewing studies of Lyme in mice that cause nerological manifestations. The B.B. appear to resort to a non-dividing form after a couple months of high-level abx, and lose the ability to infect new hosts. (i.e: fresh ticks apparently can't- or atleast don't- transfer Lyme infection from a 'treated' mouse to another mouse.) This may be comforting to some spouses, but doesn't solve the problem.
IV abx therapy has shown to Definitely be better in knocking down these hold-outs, though it seems to need oral followup to maintain the improvements that are gained.
I've been reading about various Oral abx therapy studies w/ 3rd & 4th generation cephalosporins that sound promising, but most are $$$. Still, they compare results (typ 90-120 days) with 30 days of IV Rocephin. Some are quite comparable, others are disappointing. I will post a couple such study summaries here by the weekend.
It still appears that "IV" is the best route, but as I don't have insurance, & blew most of what I had on docs, tests & meds to get better, I don't see a PICC line anywhere in my near future.
Am very interested in the original question, though. Hope someone has good results to report... & is still here on Lymenet to tell us. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
I have been treating Lyme and company for one year with various high dose orals, Mepron, supps etc. I have seen slight improvement.
After seeing my LLND just a couple of days ago, it appears we will evaluate for IV next month. My infections seem highly concentrated in my CNS and cranial nerves. She said some people do respond to orals with the neuro symptoms that I have; but, that after one year, she feels I should have seen more improvement and that maybe I need the better penetration that the IV will provide.
I really don't like the thought of having to go IV. At the same time, I am so tired of trying to buck these horrible CNS symptoms that I am ready to attack full force and see what happens. Time is so precious, this disease has already consumed plenty of my time/life, I guess I want to move things along if I can. I am trying to be patient, but after a full year of orals it does seem like I might need to look at something more aggressive.
If my insurance will cover it, I think I want to see if IV will accelerate things, get me "over the hump" if you will. Then follow up with oral tx to, hopefully, get me to a good place. This is just my experience up to this point, we'll see. So I guess Geet, to answer our question of when? It's probably different for all of us. Depends on your symptoms, improvement or lack thereof with orals, your LLMD's thoughts and really what you want to do.
Everyone says this is a marathon and not a race; but, for me, after a one year marathon with very little improvement, I guess I want to sprint for a little bit and see where it gets me.
From what I've read from others, I certainly don't expect IV to be a magic, quick cure all; I know it's not. I am just trying to remain hopeful that it might be another effective component to regaining my previous good health.
I'm still on the front-end of all of this. Hopefully, someone will come along who can share their past experience of when they made that decision, if they saw improvement, etc. etc.
Good luck to you.
TS
Posts: 566 | From West Coast | Registered: May 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Greet
Yes you can -- ether way it take Time --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I sure hope so as its all I have going for me. I have two lyme friends who have come a long, long way on orals! They weren't sick as long as me. It seems possible.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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Thanks for the explaination, I completely understand being in a mood as I find myself in one often these days...
I'm glad you were able to get 80-90% better!!!!
Melissa
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I used orals only and am almost completely 100% all the time. That said, I'm not so sure it was the antibiotics that got rid of all of the neuro stuff. My brain DEFINITELY got clearer when I did massive yeast killing and detox, and this was many months prior to going off antibiotics. Although I think abx got rid of the panic attacks, migraines and neck pain.
My point is - not everything is Lyme, and some of the medications themselves cause issues.
When you've hit the point that your symptoms have gone neuro, you'll need to address way more than just the Lyme.
You'll need to address coinfections, mineral level restoration, fungi and viruses, and implement major lifestyle changes that got you into this mess to begin with.
We're all different and end up in different conditions, so whether it be oral or IV really depends upon your personal situation.
There is a light at the end of the tunnel - an attentive LLMD should be able to guide you toward it. Just make sure you pay attention to your own body's signals, because no one knows you like you do.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Think it depends on who you talk to...many lymies have had good progress on just orals - as long as it can cross the blood brain barrior.
I did make major progress with my neuor symptoms on IV . It's a bit tricker to keep the progress i had made on orals. But if you have a strong stomach it helps alot.
none of the above is medical advise...just my 2 cents
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I HAVE had improvement of some of my cognitive symptoms from IM bicillin. If you can do bicillin, and you haven't done it yet, I definitely encourage you to try it.
I herxed very badly the first 1-2 months @ 3xwk, then had gradual improvement, then increased my dose to every-other day, herxed ~2 weeks, then had better improvement, and recently had most improvement to date.
I credit the bicllin, esp. because I had to go off Mepron and Zithro due to other issues. I'm in a holding pattern now because I can't start any new abx (oral, IM, or IV) until my liver enzymes normalize.
My neuro issues have included cognitive, psychological, inability to speak, migraines, and occasional partial paralysis (which might be more musculoskeletal/immune, though, as it goes with pain and exhaustion).
I do still have a lot of neuro issues, though. I've had improvement the most in terms of major reduction in migraines, significant improvement in psych stuff (though that has been my most constant, sometimes most severe symptom, and I do still have some -- it can be hard to measure), and limb mobility.
Just recently, my voicing had improved a lot, and now it's gotten worse again, though not as bad as before. My cognitive impairment has not been helped by anything, as far as I can tell.
I've started to backslide or plateau in some of my neuro issues, and I'm not sure if that's because I had to stop babs tx (for example, the voicing issue definitely seems to be a confluence of babs w/Lyme) or if it's because the bicillin has done all it can do.
Right now, I'm considering try IM Rocephin (if my LLMD will agree to it) as a way to avoid the complications with IV while still getting the benefits of Rocephin and a more direct route than oral, although I can't keep that up forever because I will run out of injection sites quickly.
I'm also considering which babs or bart tx I should try, and whether that will get to the neuro issues more.
I have backslid recently in other areas as well, such as pain and exhaustion, so it's hard to know if this is the Bb lifecycle thing (and I'll improve again) or if it's not treating babs or if it's that the bicillin has stopped being as effective.
So, I don't know if this helps or not. I debate this issue with myself constantly, and my LLMD and I are both torn between the pros and cons.
I have severe MCS, which makes IV much more complicated, and I've had two friends die in the past year from blood clots in their lungs (not related to Lyme or IV), so I have a lot of pretty rational concerns over IV, as well as just fear because of my friends.
I hope this is of help. Take good care. -sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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