I have been diagnosed by my LLMD as late stage chronic neuro Lyme with co-infections (Babs, Ehrlichia). Hence - most of my symptoms are neuro.
My next session with LLMD will be to discuss oral antibiotics or IV. If we do the IV, my regular MD would need to order it so insurance covers (he has done this once already).
If anyone has overcome neuro (i.e. dull pain, achiness on all sides of head and forhead, dizziness, tingling on side of face) with orals alone, I would greatly value your sharing.
Personally I would prefer IVs, but would like to be prepared for my next LLMD visit. Much thanks.
Posted by Beverly (Member # 1271) on :
Hi MorningSong,
I am also a late stage chronic neuro lyme person with co-infections.
I have overcome many neuro symptoms with just oral abx. I was on a combo of meds and was treated for Babesia for nearly 3 years; and my Brain SPECT SCAN when from Moderate Global to Mild Global. My really bad headache days are in the past.
I responded really well to abx tho, not everyone does. I also did alternative stuff, I had all my mercury fillings out, did Vit C IV's and changed my diet.
I hope you see improvement soon.
Posted by DJP (Member # 5893) on :
I'm still struggling to overcome them after oral and IV. Deb
Posted by seekhelp (Member # 15067) on :
Bev, did you actually get a MI doc to treat you that long? WOW.
Posted by Beverly (Member # 1271) on :
Hi Seekhelp,
No, I had to go to New York for a doctor. I had my SPECT SCAN done at Columbia Presbyterian Medical Center.
Posted by MorningSong (Member # 19989) on :
Thank you everyone for sharing. I dont feel so alone.
Beverly~ Thank you for sharing your success story. How very encouraging. Babesia is what the doctor wants to treat me for first.
Posted by TF (Member # 14183) on :
I and my friends all got rid of our neuro symptoms and our lyme disease, babesiosis, and bartonella with orals only.
I had 2 UBOs (unidentified bright objects) on my brain scan and one episode of a "major CNS event" with gaps in my visual field, inability to talk, walk, move, or think.
I had trigeminal neuralgia, major unrelieved dental pain, 3 1/2 years of bilateral facial drooping, lots of headaches and neck pains, extreme muscle weakness (which is neurological in origin), memory loss, derealization, word block, feeling of being stabbed with thousands of pins, feeling of moving patches of sunburn all over my body, sound sensitivity, dry eye and dry mouth, etc. etc.
It all went away with Burrascano type treatment--high-dose combination antibiotics.
Posted by AliG (Member # 9734) on :
I treated for a full year with orals before switching to IV. My labs were positive for B.microti, B.duncani, Anaplasmosis and Lyme, SPECT indicative of neuro-lyme, Fry's "rare coccobaccili" and Sx/relapsing pattern of BLO.
My oral ABX and 1st round of IV Rocephin left me relapsing. One month of Levaquin seemed very helpful initially, however I believe that we should have still been addressing Lyme at that time because I developed MS symptoms of Optic Neuritis and Uhthoff's phenomenon.
My second round of Rocephin, after determining that the ON was caused by Lyme and not Levaquin, was done in combo with Biaxin. I also did Zhang's Artemesiae & Circulation P and periodically some of his other herbs during that time.
I believe that it took about 2 months before I started realizing improvement.
Biaxin (4 mos) & Rocephin (added after 1 mo. for 3 mos total, seemed to alleviate my MS symptoms. For the last 5 days I stopped the Biaxin & did Flagyl to address cysts.
Babs flared again during that Tx and I had to launch a full-out assault on that because I'd treated it several times early on.
I followed the Biaxin/Rocephin>Flagyl with Bactrim DS for 1 month and then did IV Clindamycin, IV Azithromycin and Mepron with pulses of Flagyl and Artemesiae (Zhang's).
Since I was still having BLO Sx we followed with Mino/Rifampin and have just added Levaquin in again after about 4 months.
I believe that I am still seeing cyclical improvement and trying to balance detox with Tx.
I don't believe that I would be functioning right now if it weren't for the IV.
Posted by steven (Member # 13101) on :
so far i have only seen improvement on iv - a similar regimen as ali g uses. unfortunately the progress "only" lasted for a year.
Posted by ebbakarin (Member # 16362) on :
I had severe neuro problems that progressed from not so bad to very very bad in the course of three months before treatment. 5 months of IV rocephin (with a few other things) was enough for me to get to the point where I would be stable enough continuing on just orals.
While I think I would have gotten to where I am now with only orals, as I understand it I got there much faster with the IV.
Good luck!
Posted by lymeinhell (Member # 4622) on :
I beat it with orals only. Have been off abx more than 4 1/2 years now and have my life back. I personally feel IV should be of last resort - why put yourself through that when it may not be necessary? But that's just my opinion.
The key is getting rid of the coinfections. (Babesia particularly tough to treat). And treating fungi, parasites, detoxing and rebalancing your minerals. And changing your life so you don't end up in the same mess again. Antibiotics alone will not get you completely over this, but for most a necessary step.
Hang in there - people do get better. Don't let the label 'chronic, late stage, stage number whatever bum you out - it's just a label.
Posted by LZOChicago (Member # 8641) on :
Julie - Thanks for your encouraging reply! I am glad you are better. Can I ask how long you had Lyme before diagnosis, and also what cos you had? Thanks so much.
Posted by steven (Member # 13101) on :
and of course, julie: which abx-regimen did you use?
Posted by ESG (Member # 4816) on :
YES, but it took years!
ESG
Posted by MY3BOYS (Member # 17830) on :
i tx with doxy from 9/08 - 2/09 with neruo worsening, cardio worse.
started iv rocphin 2/09 still on it. tx babs x4 mo and not sure if babs really ever a player ?
into 2mo of tx for bart and HAVE seen diff. symtoms flared first few wks, foot pain got lots worse before better.
neruo and cardio improving on iv rocphin. for me, is working. slow, steady.
IV's cross blood-brain barrier better, that is fact. high doses of doxy did not work as well as IV rocphin for me.
i still have deficeits, and headaches is still ongoing. LLMD at a loss for how to help the pain from headaches. i just try to visualize "bug zapper" brain when it happens. i basically get to run around with meningitis, inflammation. but it due to killing off Bb, and toxins.
am on the usual supps, and LLMD adds others for neruo.
on zyflamend, will try to see if something cheaper avail for inflammation, that one supp. is over $50 /mo.
best wishes, but with my medical knowledge worked into lyme world- am firm believer in IV meds, one thing the science is there on. IV good for infections where you need good blood-brain saturation.
Posted by lymeinhell (Member # 4622) on :
I had Lyme for more than 10 years when dxd. I also had Bartonella.
I was on Rifampin and Flagyl for about 9 months. I was weaned off (literally pill by pill) and switched to TOA free Cat's Claw and have remained on it ever since. November will be 5 years.
Just a reminder - Detox, Detox, Detox
And IV and IM Magnesium. Crucial (IMHO, but you can refer to the endless research Marnie has posted)
My story is under the Success Stories link under General.
Posted by MorningSong (Member # 19989) on :
Just wanted to thank everyone for sharing. In just beginning treatment, sometimes the mountain seems so big you just take a moment to cry, and then get back up again. It is encouraging to hear that neuro can be overcome with IV or oral. I thank you so much for sharing.
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