posted 05 June 2003 18:52            

So I want to know. If you are like me - neuro symptom prominent with likely "only" a borrelia infection. What worked for you?
(a) Some think Donta's high-dose tetra regimen (using his name cause it's published) can get to the brain. Did you try it?
(b) How about Biaxin and Flagyl, did you try that?
(c) How about Azithro and Flagyl?
(d) Are we talking months of Rocephin here? Pair it up with the Flagyl maybe.

Please resond only if you had/have prominent neuro symptoms and let me know what has/has not worked for you. (And, oh yeah, I'd love to hear a success story).

posted 05 June 2003 19:34              

Have you started on any antibiotics? I have all of the neuro symptoms you mention and they are my worst symptoms also, do have the arthritis but it is relatively minor.

I am on iv rocephin and do feel it is being hit - I don't have a success story for you yet, only been on it for 6 weeks - doc says i need atleast 4 months.

But I can tell my double vision is getting better. I know the rocephin is definitely getting to the symptoms and causing herxing, that's supposed to be a good sign. My foggy brain is getting a little better too but the eye pain, ear pain and ringing, and especially nerve pain is still in full force but can be controlled measureably(sp?) with lots of magnesium, b vitamins and topomax.

Good luck to you.

posted 05 June 2003 21:13               

I, too, have only neurological symptoms (plus fatigue) but none of the arthritis symptoms.

For some reason that doesn't seem to make a whole lot of sense when I read up on this, I was first tried on suprax (oral antibiotic, now omnicef is the alternative because they don't make suprax in US anymore). It's in the same class as rocephin but apparently doesn't have as good brain penetration as the IV rocephin. For me, it worked about 60% all by itself. The brain fog cleared, the twitching and face pain stopped, my eye had hours of coming back into focus and no longer felt so dry, my eyelids stopped feeling like they weighed 2 tons, and my stamina improved a lot. I went from bedridden for many months to partial functioning within the first month and within 4 months, I was working part-time, living a life, and I even began jogs around the track again!

I was still bothered by the tinnitus. It had improved a lot but was still horribly bothersome, plus I still wanted my vision in my one eye back completely and consistently! Plus, I was still getting more headaches than I was used to getting.

With the discovery of a coinfection of Erlichia, Biaxin was added, and I got rid of Erlichia in 2 months. The biaxin/omnicef combination hit the neurological symptoms harder (I had some pretty rough days again) but overall, although I felt a lot worse, I had days where I felt so much better than before. I felt I was nearing the home stretch. I had a couple of "windows" of being almost symptom-free for hours at a time (mild tinnitus only remaining).

Then the IV rocephin because my doc said it is the "gold standard" for neurological lyme, and I got my hardship case with Roche approved. I also met someone who has the same doctor, and her neurological Lyme completely cleared once she was on the rocephin. It took 4-5 months though, but it really worked for her. My doc says it takes at least 3-5 months for it to work. I was hopeful, but although the first month created bad herxing with breaks where I felt good and tinnitus was going down again, I was one of those unfortunate people with low tolerance to meds and I developed gall bladder problems and HUGE GI problems. So, my advice if you begin the rocephin, is do what everyone on this net says and take good care of your stomach, control yeast, and follow-up with liver and gall bladder tests. I also have learned that it can be very useful to pulse the treatment and not push through continuously. I wish I had been up on all of this when I started!

Now, I'm back on Omnicef and herxing. I will add Biaxin or Xithromax (depending on which I can better handle). And oh yes, Flagyl. I tried it briefly and it really caused a herx, which my doc takes as a good indication. Unfortunately, I couldn't stomach it at the time (still recovering from gut problems related to rocephin), so it's still in my future plans when my gut clears. My doc wants to rotate between biaxin (or xithromax)/omnicef and biaxin (or xithromax)/flagyl.

Hope that is helpful. For me Omnicef/Biaxin was working. Flagyl seems like it may kick it over the top. Rocephin seems to work so well for many people. I just wish I could have tolerated it. Unfortunately, it really set me back. I still have the picc line in with the hope that I may be able to return to it (or the alternative, claforan). By the way, the picc line, once in, isn't as bad as I worried it might be.

My doc says that if you can tolerate the antibiotics, the neurological symptoms WILL go away. I was surprised he was so definitive and not wishy-washy about answering my question wanting assurance I will be cured! Unfortunately, I'm turning out to be one of those people who has a hard time on antibiotics. Again, do all the additional things to tolerate antibiotics, and from what I hear, the prognosis can be excellent!

I certainly wish you the best!

posted 06 June 2003 09:22               

These started to improve on Azithromycin alone and have continued to improve pretty remarkably with the addition of Bicillin. LabRat had a very similar experience.

Good luck.

posted 06 June 2003 11:49               

I'm a Neuro Lymie also and I can appreciate what you're going through.

Reading all the posts so far reinforces my belief that everyone (mostly) gets better by a different route. Not that some protocols aren't more likely than others to help.

But Biaxin seems to be mentioned quite a few times--- and that sorta fits in with what seemed to be a good drug for my neuro complaints. (I've tried it several times with some success--- but avoid it now because it seems to enhance my music hallucinations. If it weren't for that, I'd try it again.)

So, my feeling is that people almost have to keep trying to find what works for them, individually. (With the help of a good llmd, who will know which ones are better bets than others.)

Sorry I can't point to the one perfect drug that helps everyone.There isn't one.

But it sounds as if you're determined and I know that you'll find one that can help you. And being male doesn't hurt! Men seem to respond better, in general.

cave76
Have you been tested for co-infections?

posted 06 June 2003 19:23            

To answer Betsy's question. I am on week 4 of Rocephin. The only herx I achieved on this Rocephin was after I was off for five days due to a low WBC. The restart sent my temp to 100 with all kinds of fun-ness. Since then, I have that airplane-engine pitched ring in my ears. Luv it.

If it's okay with you, I am thinking we could use this as a little forum for those of us else with prominent Neurological Lyme for a while. That is if you want to participate. I have a few thoughts and some more questions.

Key for us is getting to the brain, and I read that the accomplished researcher Dr. Phillips believes that tetra can be effective and cross the BB barrier at high enough dosages. Tetra is also believed to inhibit cyst formation so maybe it is the complete package. My problem with it is that I think you can't mix it with the Flagyl right? If there are some who have failed with a 2-year 1500-2000 mg/day tetra program then I'd like to hear about it.

NP, you said that you are using Dr. Donta's regimen. Can you elaborate on what you are doing and what kind of results you are seeing? I am most interested. Did you say that you are switching between Biaxin/Plaq and Tetra? Maybe this IV in my arm should take a hike after all.

The lab research has some interesting insight. It seems to say that the Rocephin will often cause the borrelia to go to the cyst form and that Flagyl can be affective against this form, so I am thinking that I would like to try the Flagyl (despite the kind warning of S2S regarding the GI and the gall bladder.) Weird science.

On the GI: My maintenance is probiotics, acidophilus/lactobacillus, yogurt, and lots of oatmeal raisin cookies. I read somewhere that grains in the GI reduce the acidity. A more basic PH is less bacteria-friendly, as I understand it. Let me know your thoughts if you got em. Love the cookies.

posted 06 June 2003 19:36               

I'm happy to use this as a forum to focus on neurological Lyme symptoms. I sure need all the input I can get! I also want to hear as many success or even partial success stories as I can! I hate this stuff in my head!

posted 06 June 2003 20:30              

I am planning to ask my llmd about the cyst form also with the rocephin, i had not heard much about people taking anything for it in combo with rocephin and was wondering about that.

It would be really great if there was a non-IV drug that worked as well or better for neuro-lyme - right now my insurance has cut my coverage off for rocephin so i could definitely use another option that would work.

posted 06 June 2003 21:20               

The only pain I had was a 2-week long severe headache. Felt like I was wearing an extremely tight ski cap. Was sent for an MRI - nothing, of course.

First treatment was with doxy for 3 months then biaxin/plaq for 3 months. There has been noticible improvement from day 1.

The memory and organization are returning slowly, but steadily. Panic attacks gone, so is depression.

posted 06 June 2003 23:40            

I even bought Lida Mattman's text reference
book for $125.00, and had to have a medical dictionary on hand, as it's not written for the layman.

It's my personally opinion after reading that book and other bacteria research, that once Lyme morphs and turns into a variant (the proper name for cyst or L-form) most antibiotics will not touch it.
And also in my opinion - once that occurs
some abx does nothing but screw up your GI tract... although in some cases I think the presence of the abx in the tissues keeps
it in variant form (so people do have fewer Lyme symptoms).
But the varant form can also cause symptoms (and if it's in the CNS it's most likely in variant form). Constant inflammation is the variant's side-kick.

Tetracycline in vitro will keep the Lyme Bacteria from BECOMING a variant , but if it's ALREADY a variant (as it is in some people) - I don't think Tetracycline will bust them open. There can be replication
in the varaint form - or it can stay dormant.

I know the most about Plaquenil, because that's what I used (with Doxycycxline) and I have a very high tolerance for it.

Plaquenil at high doses in vitro (the petrie dish) will bust the cyst (high dose is 800 mg). BUT increased ocular pressure
is a side effect, so you have to have that checked if you do that dose. Plaquenil is
also accumulative in the body.

FLagyl has bad side effects too (weakens tendons) so I guess you have to pick your poison..

From reading about the herx, I became convinced that the body needed time to recover from a herx (if it was bad) because
bacterial debrie and the resulting inflammation has to be cleared from the body
or that starts to cause it's own set of problems.

I think everyone has to take a look at their own individual situation (including neurolyme symptoms) - and do what they think is best for them.

posted 07 June 2003 00:51            

Right now, nothing seems to be helping me and I'm really becoming quite depressed over it!

I've been on oral Zith + Flagyl for about 12 weeks. Prior to that it was Zith and Bactrim DS. The list goes one from there and includes 8 months of IV Claforen in 2000 and 6 months of IV Rocephin in 2002, oral amoxy alone and w/ either Zith or Bactrim, Rifampin + BActrim DS, Doxy, and Levaquin (which I can't take due to side effects). Hmmmmmmm - I think the only thing we haven't tried is the Plaquenil/Biaxin!!

I gained the most improvement on the Claforen as it did improve most of my arthritic, upper respiratory, and GI complaints but, the neuro stuff rages on!

Lately I've been experiencing significanat pain in my feet (peripheal neuropathy) w/ all over stinging sensations, itching, numbness, strange eye stuff (probs focusing, dryness, and other bizare things and frequent horrendous headaches + the ever lovely neck grinding and tingling). I'm so frustrated w/ it all. I can't think or remember stuff to save my life and eventhough I just returned to my job, I don't think I'll be able to hang on long enuf to ever get well.

Sometimes . . . better off "dead" really sounds like a viable option.

I see my doc in a couple of weeks and hope to obtain a new plan.

Also, of importance here is the fact that we just received positive test results (MDL) for Bartonella.

I'm not sure how much that comes into play w/ the difficulty "rounding the corner" as my doc says . . . he's proposing a 7 day IV treatment w/ some really scary sounding abx that I've just forgotten -starts w/ a "c" I think??

Anyway - thanks again for the topic. I'll continue to watch w/ interest. Good luck to you.

Sherry R

posted 07 June 2003 08:29               

Once I addressed the coinfections with another llmd I am doing better..still on biaxin/plaquneil and have added other abx along the way to help with coinfections...

hope this helps

posted 07 June 2003 11:03            

DawnE: Yoo said that you wouldn't waste your time on orals cause you tried them for six months for neuro Lyme and they were ineffective. Could you share with us which orals and what dosage you tried?

NP: I would love to hear more about your treatment successes/failures using the Donta methodologies.

Ponytail: You're a poster child for the position that IV's are not the cure-all. Thanks for the post. See below.

Betsy (AaronKatie): Have you herxed on the Rocephin? My only herx was after a 5-day interruption and then WHAM! I think this is consistent with the hypothesis that Rocephin causes the borrelia to morph into cysts.

I put Flagyl on my todo list just because there seems to be quite a bit of research (much of it from Europe) that shows that the Flagyl (a.k.a. metronidazole) is quite effective against the cyst form (intracellular). Now if I can just convince a doc to try it. I was on Flagyl once before when I had a stomach parasite many years ago and ten days did not hurt.

(& everyone) I can't say that Dr. Donta is the expert cause I don't know. But if you have not read his article "Late and Chronic Lyme Disease" published in the March '02 Tick-Borne Diseases then read it. (Do an advanced google search with the "" title in the exact phrase section and it pops right up.) Dr. Donta indicates that he believes that the IV drugs do not have greater efficacy than macrolides (clarithro/Biaxin/erithro/etc.) and high-dose tetra therapies.

BPeck: Good stuff Barb. I had "L-form" per Bowen and all I had been on was low-dose Doxy, so I question the ability of tetra to avert the development of cysts. But, you're right, research shows that tetra will inhibit its formation. On the bright side, research also shows that the longer an individual cyst is around, the less likely it is to revert back to viable spirochetes (sorry can't cite it for you). So that also points to the importance of a long-term treatment approach. Sounds like you have gotten cozy with a really good book. Can you tell us more about the herx and why you feel our bodies need time after them?

I'll check in tomorrow and then I'll be in NYC talking to an expert Neuro LLMD thru Tuesday. Can you say $600 consult and won't even mail papers to insurance? Sometimes, all you can do is smile.

posted 07 June 2003 11:31              

Tim,

I have definitely herxed big time with the rocephin this year. Oddly though, last year when i was on it for 6 weeks I did not herx at all.

I started herxing the end of the first week. It wasn't terrible, the neuro symptoms definitely increased, mostly neuropathy got worse and confusion, word finding, etc.

Then at the end of the 4th week I totally lost it. I had total confusion, I ended up hitting a post and not remembering how i'd damaged my car - the doc thinks maybe i'd had some seizures which i'd never had before. I was in state of paranoia that i'd never had been in. I had the worst tremors of my hands and my legs kept shaking - this lasted about a week - and thank God so far it has not been that bad since. It is somewhat worse than before the rocephin but nowhere near as bad as that herx.

I am definitely interested in the cyst formation though - i want to know about flagyl, i have some research that i've done and need to bring into my appt. on june 18th and anything you do find out I'd be interested in and i will post to you whatever i find out.

posted 08 June 2003 10:40            

But just the same Betsy and me are gonna hold hands. Right Betsy!? Sounds like you had some serious Herxing going on there. Dr. B say every four weeks and that was right on for you. Betsy, how long had you been suffering before you were diagnosed? It sounds like you are two weeks ahead of me on the Rocephin. What is next for you? I am always trying to think about the next step. Right now I don't like my options which is why I am headed up to NYC.

For more info on the cyst form and Flagyl check out a compilation called "Studies on the Cystic Form of Borrelia Burgdorferi." A google search can get you there. It's actually at www.lymeinfo.net/LDCysts.pdf. It shows why latency and relapses occur, and it is the chief reason why I will see if I can get a doc to use Flagyl. Again, this doesn't mean the other drugs don't work over time . . .

posted 08 June 2003 11:32            

I had that feeling like a cap was tightly squeezing my head, weird "pressurized" feelings.

Before I went on antibiotics, I upped my dose of garlic to 4000mg.....was shooting for 20,000 or somewhere inbetween but haven't made it there yet.

I don't know if it's just coincidence, but in two days my head weirdness was completely gone. Now I still have cognitive problems but then I've had to back off garlic temporarily due to Biaxin bothering my stomach.

But I swear, it's like the garlic opened up the blood flow to my brain or something. Guess that's possible, since it is a blood thinner, of sorts. It sure worked for me and I'm not so sure the other cognitive problems wouldn't have improved had I been able to keep it up.

Don't take mega garlic if you already are on blood thinners, by the way.

This next week I am upping my garlic again and I will keep you posted. They sell 1000mg doses at WalMart which makes less pills to take. And it can't hurt, I researched a full day and found no negative info on high doses of garlic (besides the blood thinner warning).

posted 08 June 2003 18:18              

I'm right there with ya!!! Yeah you are like 2 weeks behind me.
_____________________________________________
how long had you been suffering before you were diagnosed? It sounds like you are two weeks ahead of me on the Rocephin. What is next for you?
_______________________________________________
I suffered for atleast 20 years before being dx'd with lyme, I had so many misdiagnos' and docs telling me i was crazy (and i wondered myself). I don't really know what is next, I have an appt in a week and a half and we have alot to talk about for sure!!!

Please let me know what happens in NYC, I'm very interested. I will check out the website on the flagyl, need to have some amunition(sp?) for my appt.

Hey, i have a new odd neuro symptom, everything seems to be moving side to side (maybe i already mentioned this, no memory either), like my eyes are moving back and forth though they aren't. Have you ever had that one? Not sure if its part of a flare or what!!

posted 21 June 2003 10:36              

I'm starting my second herx again, yuck! I, too am wondering about switching llmd's.

posted 21 June 2003 20:15            

The Cyst form document is posted there & has numerous abstracts to read, including the one on Flagyl & cysts.

But even more comprehensive information is in the "Photographs" document (at the same website). It has pages & pages of photos of coccoid forms of 'chetes, accompanied by quotes from peer-reviewed studies explaining all the information. VERY worth reading and a good one to share with your doc(s).