I have neuroborreliosis (big time) as well as lyme arthritis.

My stomach is in bad shape and I can not put it through much more.

I have been off antibiotics (was taking amantadine and clarithro for 5 months)with Quamatel(for my stomach),it seemed to relieve many of these flipping symptoms.

When I stopped the majority returned, some worse than before, and some new ones that I did not have showed up...............

So tired (CFS and depression)of fighting this battle but know that I need to.

Someone help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Ideas, suggestions, anything!!!!!!!!!!!!!!!

I thought since i couldnt give much advice i could at least bump this back up to the top for some one who may have some advice.

And, it didn't work.

Doxy IV helped in many ways, but we relapsed off it, possibly because we hadn't treated for coinfections, possibly because the cyst form is just too insidious with the IV.

We're doing much better on bicillin, and after coinfection treatment, and with lots of herbal supplements and detox and liver support etc.

Don't want to be discouraging, but that's my experience. After doing EVERYTHING under the sun, practically, I really feel that the IV's throw the body badly out of whack, and that a gentler approach and attention to detox and immune system support of all kinds is more effective.

My husband just finished 2 months of levaquin. This med scared me to death, and I got the direst warnings from people who had been seriously and possibly permanently harmed by the quinolones. They were honest and specific, and I really appreciated the caring and time it took those folks to write to me directly.

But -- the levaquin worked well for my husband, and his head is clearer and he's feeling better after it. He took all the precautions he could, based on what our research told us, and upped his intake of magnesium, vit C, and glucosamine/chrondroitin to offset the effects of the Levaquin.

So, that's my cautionary tale about a cautionary tale.

Have to make a decision on what to do, if there are any other suggestions regarding
abx I'd appreciate them.

I AM ALLERGIC TO CEPHALOSPORINS AND CILLINS!

I am already concerned about taking flagyl but do not see many alternatives for the combo fight.

Thought I was being conservative on the doses my doc and I had agreed to and the breaks in b/t. What dosage were you guys taking, did you take any breaks?

If I understand the spirochete correctly it is cyclical. My doc and I believe that 4 days off is not enough time to give them the chance to recycle.

Sorry to be a pest, but, again the same ?

PLEASE HELP!!!!!!!!!!

I can't remember the IV flagyl doses, but we didn't take breaks and that may have been the problem.

The search isn't working for me right now, so I haven't been able to see what your history was.

Have you treated for coinfections at all? Because that seems to be a critical factor with the neuro stuff. After 16 years, we FINALLY treated for babs and for bart, and what a difference.

What about for yeast?

I've also had major stomach issues in the past. I think you need to watch these very carefully, as they can both affect your ability to absorb oral abx AND cause serious leaky-gut problems -- including related neuro problems. For me it was a matter of watching my diet, repairing the mucous membrane with sacchromyces boulardii and probiotics, and addressing h pylori and c difficile.

For my husband, it was also a matter of hiatal hernia and using a proton pump inhibitor (his esophagus was ulcerated from acid reflux).

Were you taking the amantadine primarily as an antiviral, or also for the stiffness and fatigue?

Many people pulse AND vary their abx over days or weeks, so I'm not sure that's a problem -- might even be a good thing. Bb does have a long reproductive cycle, but some people report doing very well on a sort of staggered/pulsed schedule that appears to "surprise" the bugs.

There are alternatives to the cephlasporins and penicillins; also there's Ketek to explore. I truly can't advise you on your choices, but maybe you can talk through other abx options with your doc as you go, depending on your response? It sounds as if you're working with an LLMD?

For me, doxy (oral) was easier to take than biaxin. IV doxy worked well, as far as it went; I have a feeling if we'd done the coinfection stuff at that time, we might have gotten a lot further.

I know this is way more indefinite than you want, but it's pretty much been trial and error me and, I think, for all of us. The mechanism of how different individuals respond to different pharmaceuticals is just not well understood. It's frustrating that it can take so long to see results; be sure that you keep a good journal. Sometimes you just have to start, and then keep careful watch.

Wish I could be more helpful. Maybe Tincups reports on the recent LD conference can shed some light for you, including the Marshall Protocol stuff.

And maybe someone else can come by with better suggestions. At 2 AM my time I'm anxious to be doing something useful but I'm not sure this is it....

I have had a really bad day and have no energy left to write more but wanted you to know I appreciate your help!

I will write a longer response tomorrow morning, I live in a different time zone as you can see.

Again, my sincere thanks!

If you don't want to go the Flagyl route, you might want to try higher doses of standard antibiotics. If the clarithromycin relieved your symptoms, albeit temporarily, I would definitely get back on it, although at a higher dose. If you just go back to the same dosages , you're just going to relapse again. I think Zithromax (which is another macrolide) is the better drug because you only have to take it once every 24 hours which makes it easier to fit into a busy schedule. You should take it with food especially if you are having stomach problems.

I had success with Doxy and Zithromax. I would take the doxy at lunch ( 100 mg before lunch and 100 mg after). Then I would take 250 mg of Zithromax after dinner. If I were you I'd up the Zithromax to 600 mg since you already relapsed at standard doses.

Good luck,

Jack

I had to print your response and go through it step by step, don't seem to have the recall I used to (wonder why) so it takes me longer to respond, trouble keeping things straight in my mind ya know....

Answers to your ?'s:

Have you treated for coinfections at all?

Tested for coinfections in Feb 2002 when I was diagnosed 2nd time with borrelia (long story), tests were neg. not sure if I should be retested but maybe it is a good idea.

What about for yeast?

Take nizoral (ketoconazolum 200mg) 2x/day when taking abx. Keep a supply on hand at all times.

For me it was a matter of watching my diet, repairing the mucous membrane with sacchromyces boulardii and probiotics, and addressing h pylori and c difficile.

I drink Acidko (acidophillus/1% fat, I gained weight since I became ill) everyday.

Were you taking the amantadine primarily as an antiviral, or also for the stiffness and fatigue?

I used amantadine for 2 reasons:
I have been diagnosed with cervical cranial syndrome, cervical brachial syndrome with radiculopathy C6, C7 bilaterally, dorsal protrusion of C5/6 and C6/7 discs and spondylosis deformans C5-C7 (had several MRI's done), it helps with the myalgia and arthralgia.

2nd reason, to change the ph allowing the clarithro to have better results in attack process.

Many people pulse AND vary their abx over days or weeks, so I'm not sure that's a problem -- might even be a good thing. Bb does have a long reproductive cycle, but some people report doing very well on a sort of staggered/pulsed schedule that appears to "surprise" the bugs.

Am trying combo now, will see how it goes, maybe pulse will be next, each day is a new page in this book!

There are alternatives to the cephlasporins and penicillins; also there's Ketek to explore.

Not familiar with Ketex, will check it out.

It sounds as if you're working with an LLMD?

My wonderful neurologist (actually my angel as she saved my life) is becoming a LLMD, she is the only specialist here that I know of. I collect all of the most recent info coming out by the best docs out there from Europe and US, she has no time because she is a doc for a lot of folks with borrelia. She works with me, not against me, because she wants to find solutions and we both hope that through our research that we can help others through her treatment. I know I am very fortunate to have a doctor that believes.

For me, doxy (oral) was easier to take than biaxin.

I have big stomach problems with doxy (oral) usually have to take quametel for my stomach when I take it but at least I'm not allergic to it, yet!

IV doxy worked well

Haven't tried it, but will think about it.

I know this is way more indefinite than you want, but it's pretty much been trial and error me and, I think, for all of us. The mechanism of how different individuals respond to different pharmaceuticals is just not well understood.

I understand and agree, each of us has specific factors that contribute to what is happening to us, I also spent time in the persian gulf in 90/91 as a commander and chances are big+++ that it is also a contributor to what is happening to me.

It's frustrating that it can take so long to see results; be sure that you keep a good journal.

Have started this many times, keep forgetting where I put the damn thing and start a new one. Even carried a pocket notebook (computerized) for awhile and lost it somewhere along the line.

Sometimes you just have to start, and then keep careful watch.

Will do it!!!!!

Wish I could be more helpful.

Please forgive me if I do not seem apprecaitive, I am believe me!! Sometimes I feel very much alone in this and just need some one to say you aren't and that this is what I did and maybe I can get a new idea. NO ONE UNDERSTAND BETTER WHAT THIS DISEASE FROM HELL IS LIKE UNLESS THEY HAVE IT, even my doctor, bless her heart, doesn't exactly get it.

Maybe Tincups reports on the recent LD conference can shed some light for you, including the Marshall Protocol stuff.

Am watching her reports carefully and they are helpful/useful and I am grateful not only that she is doing this but that she maintains a wonderful sense of humor as well, it's uplifting!

Not sure what I think a/b Marshall Protocol yet. Am entertaining it though.

And maybe someone else can come by with better suggestions. At 2 AM my time I'm anxious to be doing something useful but I'm not sure this is it....

I thank you for taking the time to answer me, you have been most gracious and kind. I know I get so frustrated sometimes that I push hard, I'm sorry if I didn't sound grateful.

best regards,
ladyhawk

[This message has been edited by minoucat (edited 04 November 2004).][/B][/QUOTE]

Hey Jack, thanks!

If you don't want to go the Flagyl route, you might want to try higher doses of standard antibiotics. If the clarithromycin relieved your symptoms, albeit temporarily, I would definitely get back on it, although at a higher dose.

Good idea, something I will entertain.

If you just go back to the same dosages , you're just going to relapse again.

Also something for me to think about.

I think Zithromax (which is another macrolide) is the better drug because you only have to take it once every 24 hours which makes it easier to fit into a busy schedule.

? with Zith is will it attack C and L forms without assistance. I took amantadine with clarithro to achieve the best results.

I'm just sorry (for me, too) that the answers aren't more definite.

Some time several months ago I posted an article from ImmuneSupport.com about gulf-war syndrome, specifically relating chronic fatigue, LD, and some others to stress AND exposure to chemicals. Just stress didn't cause illness; just exposure to the GW chemicals didn't cause illness. But together -- and the stress was fairly minor -- whammo, illness.

I do a heck of a lot of research but sometimes find (even though I have a couple years of premed) that I can't understand all of the microbiology or psysiology. Almost have to be a doctor yourself to figure some of this out!

RE: GWS, many of us suspected long ago that there were a multitude of factors preying on us in the gulf. If you are interested a friend of mine has published a book "America's Disposable Soldiers", his name is Robert Miller, he is a retired LTC from the Air Force. He was a Senior Intelligence Officer at the Defense Intelligence Agency in DC in 90/91. He explains with FACTS what actually happened and why GWS exists. Dr Robert Haley, Univ. Texas, is the big guy responsible for finding the neurological connection and actually proving that GWS is real!! He is one of our Heros.

So, the way I look at it is now people will only think I am half crazy because Chronic Borreliosis isn't considered "real" according to some "folks"! In time, all in time!

Ladyhawk - with Zith, will it attack C and L forms without assistance. I took amantadine with clarithro to achieve the best results.

According to my second doc it does, but I still took flagyl anyway. You can read my symptom/treatment history here, if you scroll down to the end of the page:
http://flash.lymenet.org/ubb/Forum1/HTML/022173-3.html