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).

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.

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!

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.

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.

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!

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.

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.

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.

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

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

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.

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.

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 . . .

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).

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!!

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

Just wanted to add one other alternative that works well on neuro lyme...Rife.

I have pretty much done every abx that has been mentioned in high doses...I tolerated meds well, was on orals, but mainly IV meds (the only thing that ever touched my neuro/brain symptoms)..including IV Flagyl along with Rocephin, Claforan, Zithromax, Unasyn, gosh the list goes on.

I always felt MUCH BETTER when on IV...as long as it worked(for about 6-12 weeks), then I quickly relapsed. That was the problem...my meds never worked longer than 6-12 weeks before those darn keets mutated and adapted and my IV meds became ineffective and had to be changed.

I finally used up every abx family available to me and became an abx failure.

I thought for sure my life was over as I quickly went back to square one despite almost a year of intense IV therapy...and it seemed I had no more options to get relief.

But then I discovered Rife...and IT'S WORKING!!...even on my most bothersome neuro symptoms!!

It's been 4 months now off IV and doing Rife and 2 months of being off all orals as well...I NEVER thought I would see the day I could get off abx and be ok...and I'm not just ok, I actually went rollerblading the otherday, I work full time again...I am rediscovering people and activities I haven't been a part of in 3 years! I am getting my life back!!

I am not totally symptom free yet, but it was just a few months ago that I was so sick, planning another medical leave, preparing to sell my place and move in with my parents...I could not function...yet here I am today SO MUCH BETTER...and continually improving!

Knowing what I know now...with how sick I was when finally diagnosed... I still think I would do the 2-3 months of IV...that stabalized me. (I was having recurrent menigitis attacks, seizures, intense head pressure, vision and hearing loss and much more...I needed to be stabalized! In my case at least, the meds put the keets into dormancy and I stabalized...I needed that.

But now instead of bombarding my body with intense abx dosages, constantly swapping to different abx families to find relief, dealing with the consequences of all the abx (like awful yeast infections)etc...I wish I knew and believed in Rife and started Rife right away once I became stabalized!!

I know Rife is not mainstream, and most LLMD's won't know about it and if they do they can't advocate for it (it's not FDA Approved)... so it's hard to trust that this therapy works...but it does...and I just wanted to put this option out there along with the various abx options!

P.S. I know a lot of people are going to ask "what is Rife?"...so here are some links to read up and do some research if interested.

Websites to do research http://flash.lymnet.org/ubb/Forum1/HTML/016260.html

My personal Lyme and Rife story http://flash.lymenet.org/ubb/Forum1/HTML/016033.html

Also check out http://members.aol.com/Theskyking/myhomepage/listings.htm

I am having an intense neuro-focused-Lyme crisis with my son, so I won't be able to get into this as much as I'd like..

But this is a discussion that is great, and I will toss in my experiences.

I presented with mostly neuro symptoms last June, and was diagnosed with Lyme, and also came up with a pos Babesia test. Babesia was treated for five courses of Mepron and Zith..and the symptoms that we managed to isolate as Babs are gone and have not come back..so Babs MAY be gone. But it did complicate things..

That said...along the way, I underwent the high dose Amoxil therapy that has had some success in treating the other spirochetal brain infection..Syphillus..

Basically..anywhere from 12 to 20 grams of Amoxil per day, based on weight and rate of absorbtion (measured by blood draws till it is around a level 12ish???)

That was a good thing to try, I thought, but you need a truckload of acidophillus...

It did not stop the progression of symptoms after five months on it, though, at least not for me..

Maybe because of the Babs? Don't know..

My symptoms were extreme memory loss, extreme delay in response time, complete lack of access to my vocabulary, could not put a stamp in the right place on an envelope, slurred speech, spinning thoughts, total sleeplassness, and neuro-infection-driven depression and anxiety (beyond the naturally occurring depression one might feel when slammed with this illness.) It was feuled by something I felt was "outside of me".

After MRI, SPECT, and neuro-psych testing, we went to IV Rocephin, with Zithro initially.

I had my first Herx..which lasted two months..then snails pace improvement, which I can now track with old symptoms diaries.

We added Plaquanil after two months...to get at cysts and synergize with Rocephin..still on Zithro with that.

I am in my seventh month. I still have a delay in response time..but the gap is closing..I have some memory problems, but much less (in the fall..I would forget things that happened twenty minutes earlier)..I have access to I'd say about 60- 70% of my vocabulary..but still do alot of fishing there, writing easier than speaking, still have sleep problems, but better..my depression and anxiety seems to now be the "natural" kind, as my son is now quite ill again.

I will stay on so long as it is tolerated, with no adverse reactions or lab results, and so long as I feel improvement, do not plateau or get worse.

My Doc does surveilance labs weekly, bi weeklt blood cultures to see the line is not causing infection..dressing changes in his office always..monthly sonograms of the billiary tract to check for GB trouble (early signs..sludging)..we track symptoms, and check periodically pcr for Lyme, and co-infections.

We also use actigall in order to prevent Gall Bladder problems, new for him..but many Docs say it is effective..

So far so good. I was even able to perform again recently, something I could not have done three months ago, due to memory and anxiety.

This discussion is great, we are all different in response, symptoms, immune, co-infections...

and I am now trying to figure out (with the Docs) what is going on with my son. What to do in his case..

Mo

Sorry I didn't update you sooner. I thought of you often over the past week, and almost emailed you once. So you saw my other post. I mean, since I have to travel anyway, what difference does it make if my physician is in Canada or Miami?

I take every physician that I see a stack of manilla folders complete and separated by topic and area of expertise . . . ophthalmology . . . infectious disease workup . . . mayo workup . . . lab tests . . . diagnostic studies . . . etc.

Anyway, before the trip, I had already been on 4 weeks of IV Rocephin. The only person that I know who is better after a one-year-plus illness with neuro symptoms including depression was treated by Dr. F highlighted in the People article. I am sure others have beat it too. I mean I know that everybody is different, but I gotta start somewhere. Anyway, so this person was on 12 weeks Roc followed by a few months of Biaxin. Years later he has no pain, but says that he has some nerve tingling and twitching and lives a normal life. (Making a long story longer, but if you are like me you want to hear it all).

So I went up to see the ladyneuro in NYC. She works with the best. Our initial consultation didn't offer any warm fuzzies. She is a busy lady and her schedule (sounds cooler when Brits say it . . . shedule . .) was already messed up and I was a 9am. She looked me over pretty quick. We talked. We talked some more.

Somewhere toward the end she said something about 6-11 months of IV Roc. I am thinking, did she mean weeks? Don't think so. Anyway, I know a guy who relapsed after 5 months of Roc. The literature is really solid on the cyst form and how it comes back after treatments. But she advised against a combo approach right now. I think she was thinking "study candidate." But I am pretty confident that I won't be a study candidate since I doubt that I will meet any criteria.

Incidentally, for what it is worth, I actually got Dr. M of Yale and early lyme research fame on the phone last month - kind of by accident but I got him to talk. He seemed like a nice guy. He said to me, "Rarely does a genuine case of Lyme Disease require more than one or two months of Rocephin." Think about that statement cause it says a lot. It says (1) sometimes he treats for 8 weeks with Rocephin, and (2) he believes that some cases might require longer duration. Um, 12 sounds good. Laugh out loud again. Sorry, got to laugh.

After my neuro visit, the Lyme WB test goes to StonyBrook and results expected about a week from today. I am not optimistic given 5 neg seronegative and PCR tests already except a positive Bowen Lab result. Plus, I had completed week 4 of the IV just the night before our consult. I got CBC and liver enzyme tests since it was two weeks since the last ones.

So spinal tap option was out since I had just been on treatment. Four weeks earlier I was begging for an "LP," but the Johns Hopkins phys said foggetaboutit. Anyway. So I get a SPECT scan the morning after the consult. They shoot me up with radiopharmaceuticals, leave me in a dark room for 15 mins, then put me in the waiting room for 20 mins, they scan my brain. Report was back the next day . . . "borderline abnormal hypoperfusion." That's the game with the SPECT, it can see if blood flows to your brain like it should. If not, then "hypo - perfusion." Maybe I am not that bad off, or maybe 4 weeks of IV started to work. Don't know. Anyway, I'll take borderline anything after a year of tests that say I am a tri-athlete. (I must be feeling better. I am feeling kind of uppity and its after midnight.)

The neuro docs written evaluation will probably arrive in another 10-15 days. Our visit was the 9th, figure 3.5 weeks for StonyBrook test results. One week to write eval. Probably the week after July 4. In the meantime, the prospect of a good eval with a strong rec is lending my current physician some comfort and so the IV Roc scripts keep coming. Again, I am lucky.

I want to try the flagyl, which is doing nothing for one person I know. But that research makes sense. Plus, I talked to another person who felt that flagyl was key. Plus, some on this site say that it causes them to herx badly. Anyway. that is the full report about my NYC trip.

I was sooo tired when I got back. The Monday of my visit was my B-day. I turned 28. I spent Tuesday, June 10 afternoon after my SPECT on the floor of the NYSE, which was cool. Legs hurt after all that walking around. But I am lucky.

Lost my second midline this past week. Piece of flooey sprung another leak. Thursday am I had a PICC line put in before I headed into the office. Cool, I guess, if you're into it.

Friday am I gave a presentation to a bunch of brokers and almost fainted while I was answering a question on the bond market outlook. Literally, left the front of the room where I was standing and walked to the back of the room where I grabbed a bottle of agua which helped a lot.

My gut is holding up well. Knock Knock. I am taking that part of the treatment very seriously, because people say they are miserable if their gut goes bad on them. I take 3 mega flora caps in the am, and three at night. I eat plain yogurt with live cultures with raisins and bran flakes morning and night (tastes good). I also take the pro-biotic tablet with my vitamins. I don't touch dairy, fruit juice, or alcohol - anything spicey or acidic. I eat low-sugar oatmeal raisin cookies cause I read that grains are really good for tummy Ph balance. Good tummy. Good tummy. Say it with me. I love my tummy . . .

Nice work on the second herx. What was it like? Is it a 30-day cycle or were you off the meds for a while? I am curious to know since my only herx was after I was off meds for 5 days and went back on. And I was off again for 5 days recently and nothing happened when I went back on.

So you're thinking about another physician. What's up? And . . . who do I go see next week?

Again, awfully sorry about not getting back to you earlier.

All of your info is so exciting and interesting thanks so much for sharing. Which doc sent you for a test thru bowen? My problems right now are that my llmd will only test thru quest - duh ofcourse its negative!

Is bowen the only lab that can pick up a positive result while you are on abx? I know some tests will be negative while on abx.

I'm sorry, i'm just too tired now, promise to come back in the morning (after maybe a few hours of sleep) and write more! Glad you are back, was worried about you. Lets definitely catch up on symptoms and docs, etc.

Hey Tim, sorry bout the last post, thats what i get for insomnia and having a computer!!!

So which doc are you leaning towards believing the one who said no more than 12 weeks rocephin? But also taking flagyl with it for cyst form.

I brought up cyst form with my doc and swear to god she was offended and blew me off - hence my reason for wanting a new doc. Ofcourse it was the beginning of this herx and it could be a misunderstanding and i could have read it wrong!!!

My doc doesn't seem to think that rocephin should be used longer than i think 6 months max - then she moves onto doxy i'm pretty sure. But once again i haven't heard mention of cyst form!!!

So which doc did the wb test thru stony brook? Won't that always be negative if you are on abx? I have no clue but also want/need a positive but wasn't doing one for fear of it being negative due to abx.

I have no faith in the spinal tap, i had one and ofcourse it was right after my first 7 weeks of rocephin last year but it was negative and my neurologist said it proved i'd never had lyme! Yeah we believe him.

Ofcourse i've had 2 spect exams and shockingly they have come back NORMAL that is a shock since my head is always feeling like it will explode and all the other symptoms - got a new one too (on top of others) - double - triple vision - that's a fun one!

My doc has no problem keeping me on rocephin as my symptoms are so many and she clinically has me down as systemic lyme. But my insurance company has cancelled my rocephin so now i'm paying for it - and am broke, we're in the 3rd appeal and i've never been so angry. Why do we have insurance???

That is interesting about what you are doing for your tummy. I got Burrascano's candida diet this week and basically it is a revised atkins diet - no complex carbs, no starches. only fruits that are fiber fruits. Only leafy veggies (this is what i remember) meat, foul, fish, chicken. no sugar ofcourse.
I take it as eat nothing!!! I'm living on grilled chicken and celery myself and the docs are getting mad at me for losing weight - i can't win. I also take tons of probiotics and acidophilus. Turns out i still had overgrowth of yeast, probably from last year when i did rocephin and the id doc didn't tell me about taking acidophilus or anything. So now i have to take diflucan.

I'm so sick of my doctor because the amount of pain i'm in - she described it to my husband like this exactly - "There is no difference in the amount of pain your wife has and any cancer patient due to bone spurs, fasciatis(?), bone pain, etc" - then i ask for pain medicine - she says "I don't feel comfortable taking over your pain mgmt" - well i told her that my 'pain mgmt doc' doesn't understand the pain that comes with lyme or a flare so he won't treat me for it.

Anyway I'm so ready to give up right now!!!!!

Second herx has been very emotional rollercoasterish. And the pain is about 500% more than ever, seriously. plus flu symptoms. I can cry at the drop of a hat (not at all like me) plus OCD symptoms, totally not like me. Then the usual nerve pain, etc. But the emotional stuff is really tough on me. and my eye sight and panic attacks from my eyes are just amazingly tough. Herx's suck, especially neuro ones!!!

Keep me updated on your progress and test results - I am thinking of finding a GOOD llmd that is relatively close to home (Northern VA) and just getting a second opinion. I'm also needing to take my kids to a good ped LLMD which i imagine is only Dr. Jones so this will be a busy summer!!!

I have kind of the same story as everyone else. I was dx last year. My symtoms got so bad they made me leave work! I couldn't drive, couldn't even take a shower sometimes without help because of disequilibrium. I have cognitive problems and drop things from my left hand. I also have hyperreflexia, nystagmus and some other hard core neuro symtoms. And sometimes premature heartbeats.

I was treated originally with 4 weeks of Rocephin and got almost 100% better but the jerk who gave me the Rocephin(well known to this board ) cut me off after the 4 weeks as that is his limit on treatment. I am sure if I had had a few more weeks at that time I would have been cured or close to it.

My primary and neurologist got me 6 more weeks after I relapsed (of Rocephin) and then I went to a Lyme MD who has been treating me.

I am oral Doxy 300-400mg a day,. I had to go off for a few months in Feb as I was having severe stomach pain and nausea. It was not from Doxy and I restarted it 2 weeks ago at 300mg a day so far.

I feel it is helping me. My Lyme MD is willing to give me IV, if I want. I am trying to avoid IV as I am a nurse and it-a PICC-would restrict my lifting ability and I work in a hospital and I am exposed to all types of infectious agents and I don't want to get an infected PICC. I missed about 10 weeks of work last year (was on disability).

My primary has been great he will help me with antibiotics(if I decide not to go to the LLMD) and my neurologist also is great. The Lyme MD is ok I mainly go to her for documentation on my Lyme.

Sometimes all the information can be overwhemling but at least we know we have lots of treatment choices and lots of support and help on this board.

Take care,
Grace

BETSY: I am 100% gemini. Half workaholic pretending to be a stock market analyst. Other half pathetic, curled-up lyme sufferer. Incidentally, one physician at Columbia Pres said that they found that MDL Labs and Stony Brook achieved very similar results on their WBs. Bowen is neat and some people swear by them. Call em up and see who offers their stuff near you. Insurance will probably laugh in your face if you attempt a dx using a Bowen test, but then I haven't tried that angle. For another LLMD, other than DocJ, call the LDA. They are nice folks. Marie is a really caring person and she is all the while fighting her own battle. Hang in there Betsy, you are going to get better. I always tell investors that "hope is four-letter word. We don't make decisions using hope." Well, now I am on the other side of the moon and H-O-P-E is the key. That sounds nice if you say it out loud.

GACE24: Yep, I saw ladyneuro Dr. B. I can understand your concerns regarding a PICC given your situation. I can feel mine in my armpit which is a bummer. I hsd it put in a previous puncture below my elbow on my left forearm. It's a good stable site and I was running out of places in my left arm and didn't want to go to my right arm. (After all, then all those long-sleeve shirts that I turned into right-arm short sleeve shirts would be useless. Ha! I kill me!)

A bunch of people have very positive things to say about Biaxin. At some point, I believe I will try to be on Biaxin/Flagyl. Dr. Burr say biaxin is better than azithro in his work. I also want to alert you to something Gace. When I was on only 200 mg of Doxy daily, my yoga workouts almost always caused a herx.

Seriously. It was a total fluke. I was being treated by an ophthalmologist for "inner blepharitis" (it's been a winding road). I would do prolonged muscle stretching and exercises in a heated room. Within two hours of my workout I would have pronounced muscle twitching and very red eyes. That was when I first knew something was very wrong and it was what put me on a warpath going over/around/through clueless physicians.

Also, the medical abstracts that I have read indicate that whereas higher doses of Rocephin do not change the kill rate on the organism, increasing doses of tetra (and therefore I must also assume Doxy) correlate to increased efficacy on the borrelia. I can't figure it out, since then other studies show that the borrelia just go into cysts, but anyway . . .

It's important for us to all know that some believe that the benefits of the IV abx trail their utilization by many months. That is the official position of the IDSA (Infect. Diseases Society of America). They say that the inflammation associated with the disease's pathology declines over a long period of time. Now I know a lot of people will say it is baloney but I keep it in the back of my mind just the same.

MO: It sounds like you have a really good doc now. What do you perform? I love to sing. I am thinking about gittin a geetar - wonder if insurance will pay for it.

PONYTAIL: If you are around I'd love to hear what you thought of Dr. H in TX. Is he the man?

Oh yeah, one other thing . . .
CAN ANYONE TELL ME HOW TO REMOVE THIS ALIEN FROM MY LEFT EAR AND NECK????!!!

Alien in the figurative sense, of course. Sorry, just had to ask.

Best wishes. Tim

I do yoga also, although my symptoms for the last 2 months have kept me away. I always know when I am doing better because I can do certain poses like triangle and warrior and tree. Now I can't even stand with my feet together and not lose my balance. I think I am herxing from the doxy.

During the winter before my stomach problems
I was symtom free for quite awhile on the doxy. I hadn't felt like that in a long time.
So this is why I am giving doxy a chance,. I am also negative for co-infections. Yoga was a joy I could do every pose no problem! Even my yoga instructor and classmates were impressed!

I guess my peace of mind is that my doc is willing to put me on IV if I need it.I am personally at a point with Lyme that I don't want it to control my life.

I did like Dr B. If you get a copy of your report and she can document Lyme or Chronic Lyme or whatever kind of Lyme they call now it will be great documentation for insurance etc. As she is fairly well respected in the field along with Columbia.

Four years ago, I was all over the east coast, from Dutchess County to Putnam and Columbia County and even Mystic, CT near Lyme. I tramped pastures in New Jersey and Pennsylvannia. I loved the great outdoors.

Diagnosed this year when I took myself to an LLMD because I could not subtract or memorize anything anymore and walking was getting dicey. Left arm didn't move back or up.

Positive IgM from Igenex, MRI shows 15 lesions with typical Lyme distribution. SPECT scan shows hypoperfusion. Natural Killer T cells abnormally low. Been on 400 mg of doxy since. I herxed within 24 hours and my improvements have been up and down.

I have a heavy neuro component to my Lyme: Memory problems, geographic disorientation, retrieval problems (really embarrassing when you don't know what you're working on), hallucinations (a.k.a. dreams don't turn off when I open my eyes).

Vertigo comes and goes. I have ringing in my ears and ear pain. With vertigo I have nausea. I use a walking stick (don't call it a cane yet!) to help me stand up and walk without falling when I'm dizzy.

But hey, what's better since Dx? My hips and my left arm--they don't hurt as much anymore. I am not fatigued. No zoom-zoom tachycardia each day. I can sleep through the night. Muscle tightness isn't as bad, nor do I have the awful cramping in my upper body. Vibrations not so bad, palpitatons only occasionally annoying. Some days I can think fairly well, but my driving still sucks (I turned left with oncoming traffic the last time I tried, braked on green), so that's off-limits.

I may be switching to IV soon. My LLMD thinks the doxy isn't doing anything for me anymore. I am not sure. I have good weeks then weeks when I seem to slide back. This is a good week, so I am reluctant to give up too soon.

anyway.. it has made a big difference for me.. and I trust Donta & his approach to treatment more than any other I've come across in the past few years. lol.. or it could also just be that i love the man for giving me, 10 minutes into an office visit, the diagnosis I'd been fighting for for 2 years! Actually... if I remember correctly... he was the first of like 11 doctors who didn't recommend a psychological evaluation! LOL!

anyway.. long answer, but the point is: yes, my symptoms are primarily neuro, and the tetra regimen has made a difference for me.

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Originally posted by mammachase:
How do I find this article on Dr. D, I am a patient of his being under treatment for only 5 months and started off on Biaxin & Plaquenil, and after 4 months he's added Doxy. My problem is the muscle spasms/hard as rocks in my legs, my primary gave me Flexerill but is making me sick and dizzy, she mentioned theres a medication that people with MS take for muscle spasms that I could try, anyone know of this?

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I think the drug you're talking about is Baclofen. It's a safe, time-tested drug commonly used to counteract the discomfort of ms spasms/tightness.

quote:

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Originally posted by TheCrimeOfLyme:
This post is over a year old

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LOL.. you'd think I would have noticed this! LOL! dummy me... now I feel like such a hypocrite... run the official Alison Moyet forum & spend hours of my day being frustrated with people who have done exactly as I just have... lol... have to say, you are much nicer than I've become... lol