Topic: Whats your opinon on this? Been doing well for a year.
TheCrimeOfLyme
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Quick history:
I got sick in 2002. My life changed in the blink of an eye. Iw as sitting at work- got a severe splitting headache, vertigo, neck pain, eye pain, confusion.
That was the beginning of my lyme battle. Took me nine months to get diagnosed and I got on meds.
I did two years of steady non stop antibiotics: Amoxy 3000 mg a day for six months Clindamycin and quinine for 6 months Doxy for 3 months Rifampin for 3 months then Biaxin and Mepron for about 6 months.
After the biaxin and mepron, my stomach bottomed out and I got leaky gut syndrome BAD.
I couldnt touch food, antibiotics or anything. My leaky gut was so bad, I developed orthostatic hypotension from THAT and NOT the lyme and I didnt have it previously.
It took me 18 MONTHS to find a doctor who knew what *it* was. I knew it wasnt lyme.
It just so happens tht doc is my current LLMD ( and a very popular one)
He helped with me wtih the leaky gut and put me back on antibiotics. I had been off them since November of 2004. At first, I thought I was doing to die.
But basically, by the time I made it to my LLMD- I felt OK as long as I didnt eat certain things or drink certain things or take oral antibiotics ( darn leaky gut)
So, as I said- he helped me with the leaky gut and started me on bicillin so we could not make the leaky gut any worse.
I ONLY do Bicillin CR once a week. I don't do LA.
What I am getting at is this:
From November of 2004 to August of 2005, I had no treatment , no antibiotics at all, and I didnt relapse. I didnt feel GREat and was still sick, but I held strong.
I went from having 15 symtpoms down to like 5 BY GOING OFF abx. So by the time I found my current llmd in August of 2005 who helped me,
I had 5 symptoms left, but enough to make a train wreak out of me - especially with orthostatic hypotension.
DIFLUCAN cleared that up for me. I had to do 100 mg a day for about a month, but it worked, so that leaves four symptoms from August of 2005 til now, almost a year later, those four symptoms remain
BUT they wax and wane. I STILL have a regular 28 day cycle.
But.... I mean basically what I am saying is that since November of 2004 to August of 2005, NO treatment. From August of 2005 til now, I have only taken ONE bicillin shot PER MONTH ( when I flare)
Im driving again I have no orthostatic hypotension I have energy I have.. well... a life.
I am SO close to remission it is pathetic.
Im just at this point wondering how my lyme didn't come BACK ( and I had it HORRIBLE) that time off antibiotics and why I havent back slid at ALL
taking bicillin only ONCE a month. I take nothing else but I do detox. Liver flushes, sauana, bentonite clay, epsom salt , etc.
I think I have my lyme pretty beaten...? You????
I am wondering if I should just take the bicillin CR consistently every week until no more flares or
continue to do this "slow and steady pace" because for me the slow and steady saved me- the
every day antibiotic stuff was actually killing the lyme so bad, I just felt like crap.
I also DO want to add a cyst buster.
I just... anyone think Im close, real close to beating this?
My remaining symptoms are: sleep apnea ( only near period and flare or when herxing on bicillin) Headaches - mild thank god and head pressure ( flare or herxing) brain fog-cant think- feel drunk ( period, flare or herx does that to me) neck-shoulder-jaw pain ( only when herxing or pms)
Uh, add five cause PMS itself is a symptom for *me*
BUT my PMS flare is WORSE than a herx.
I can work through my herxes, even stay awake during them.
I just wanna punch this lyme out of my body now. I feel very fortunate.
Does this sound like Im about there? Any knock out suggestions. Im tired of it nagging me to death.
COL
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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minoucat
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Crime -- That's great, really. I'm so happy about the good things you've made happen in your life (and that have come floating into it all by themselves). You sure deserve them.
I don't have any knock out suggestions, but here's my opinion after 18 years of LD:
If you've eliminated other possible causes for your continuing sx e.g., yeast, mold, thyroid, etc. -- I'd treat this as if you have your situation under control doing what you're doing.
I regret to say that I've had several periods of apparent wellness (during which I discontinued abx, but took fairly good care of myself [except when I let myself get too run down from work]), but always ended up in relapse. Relapses usually took about 1 year to hit completely from the time that I stopped tx with abxand/or herbs.
Also, your sx still sound significant to me. We're so used to feeling horrendous that our standards for feeling healthy are very low. You might just need time to recover and detoxify (from what I've read, people who really do get better (which I define as 4 years without sx) report that it takes about a year to get back to a normally active life) -- but you might just as well still have an active infection.
As long as you have sx, you have to suspect infection of something lyme-related, and I'm including the coinfections and viruses along with Bb. These things just get worse if untreated.
You might try stopping one thing at a time for a decent (at least 3 month) trial period, and be ready to track every sx minutely and restart tx should you have problems again. And take care of yourself very very well for evermore.
I'd also take a close and honest look at what you do every day and compare it to what you did when you were healthy. Are you really doing the same amount of stuff with the same resiliance and energy, or are you just doing much more than you did when you were feeling sick? If you're not operating at full capacity, try gently increasing your activities for a while (maybe add extra exercise time) and see how you feel. If sx increase, you still have something going on, infectionwise.
Anyway, these tactics are what I'm doing for myself. I expect to stop abx next month, but I'm continuing aggressively with herbs and essential oils, (mostly per Stephen Buhner,with some modifications) and I'm slowly increasing my level of exercise.
I have some formal written milestonse I've set for defining health, so that I don't (once again) brainwash myself into believing that I'm just fine. I'm convinced that if I pay attention and nip any relapses in the bud I'll do just fine. I don't tease myself with the hope of cure anymore, but I do think I've got myself to where I can manage my health successfully and do the things I love to do.
Best of luck.
BTW, editing to add that in the past 3 years I've treated, for the first time, babs and bart, apparently effectively, which makes me optimistic that I'll do better than previous times I've gone off abx.
Melanie Reber
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Member # 3707
posted
Oh Miss Minou, You are SO good at this! We sure do appreciate your careful and thoughtful replies!
Hey Jodie Love, Nice to see you again. Yes, congrats on the vast improvement in health...AND on the recent engagement! YIPPEE!
I whole-heatedly agree with Miss Minou here about many points, the first being that we have a very low standard of what feeling "good" actually is.
I know for myself, that I have been putting up with so many ouches for so long, that I tend to ignore them until someone else brings those issues back up...and then I think- "Oh, yes...I have that too!".
Anyway, May I suggest in light of this, that you breeze back through a thorough SYX list and "look" for other things that may be going on?
IF in fact these are the only SYX you are having right now...I would strongly suspect a co-infection still holding you back.
Headaches, brain fog, and severe neck and shoulder pain are key issues with me right now too...and the good doc thinks Babs.
Something to consider...
Oh, and YES! I DO think you are very close to putting this behind you.
TheCrimeOfLyme
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Member # 4019
posted
Thanks for your reply Minocat. My treatment has been so touch and go, I figured since basically not doing much since November of 2004, if it was still lyme, it would have slammed me back down.
Though I think that is wishful thinking. I dont want to wait to "see" if its going to slam me back donw, I'd rather keep kicking it now cause obviously, even if I still do have it, its not very strong anymore.
My herxes are barely nothing and my flares are hardly anything. Its my darn menstral cycle that gets me bad.
I think I still have bartonella, personally. Anytime I get a killer headache that wont go away, Rifampin always seems to work. In fact, alot of improvement came this winter after I took Rifampin ( small amounts) for three weeks.
I KNOW i have yeast , there is no guessing on that. My thryoid was just diagnosed and I started taking meds for that ( low) WOW, what an energy improvement, even libido.
My strength, etc is pretty much basically pre lyme. I mowed my grass ( push mowed) three times this year for 8 hours each. ( I have a large large yard and the lawn tractor broke).
It didn't bother me except a KILLER bad three day migraine after each one, so SOMETHING is definately still there. I laid out the other day and I think I fried some keets cause I got a bad migraine after that as well.
Im going to keep going with the bicillin and diflucan and talk to my doctor about throwing in some cyst busters. Ive NEVER had one. If he doesn't give me one soon, Im going to drink Pepto Bismol on a daily basis.
Thanks foryour thoughts. Jodie
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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TheCrimeOfLyme
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You replied when I was mel, so I missed your post at first.
You know, the first time I seen my current LLMD, he said "well you have lyme, but you have something else as well".
He did find a PCR Positive bartonella. But he never treated it. While I love my LLMD, I dont know what he is waiting for- that was a year ago.
He said he was REALLY looking for erlichia and was surprised the bart came back. And all THAT time IIII was really thinking babesia.
I took biaxin and mepron for six months and that was my first remission. I felt GREAT. Come to think of it, better than I do now.
I still can't touch the herb artemisinin. One puts me in bed for about three days.
And I did do clindamycin and quinine for six months and there was some great improvement done there too. Hmm.
Two other sxs that I did think of are these:
Right before my period, when I am first waking up, I get earthquakes. Thats the only way I can describe it. Its like a full body earthquake and I cannto figure out where its coming from cause its so prevalent.
The other one is - sweating, under my underarms. I have had this since I was 16. THey told me it was hyperhydrosis and I had it on a daily basis. I soaked through shirts, etc every day of my life for ten years.
Once I got lyme treatment ( some ten years later) that symptom went AWAY but it comes back during my period for two days and I can't control it.
So SOMETHING I took knocked it out. I BELIEVE it was rifampin however that knocked it out.
I just wish my LLMD would get on the ball.I wish I would get on the ball as well.I may try artemisinin again just to "see" what happens. I still have two bottles of mepron never opened.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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I'm no expert but when I read your list of your 4 remaining symptoms - like Melanie - I immediately thought Babs.
Reason is that my hubby used to have sleep apnea and Lyme treatment didn't help against it. Only when he started Babesia treatment it went away. It still comes creeping back when he discontinues the Babs meds.
The other symptoms: Headaches, brain fog, neck-shoulder-jaw pain do sound a lot like Babs, too.
Hope you can get rid of these last problems, too.
All the best,
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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kelmo
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I do have ONE suggestion that may help level your PMS symptoms. Try a good bio-identical progesterone cream. With all the stress in your body, you are probably estrogen dominant.
I can send you some information if you like, but you would only need to use it from day 12 to 26 of your cycle.
It can't hurt.
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GiGi
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J, you posted under another thread that you had been seeing Dr. G. in Wa. What did ART (Autonomic Response Testing) reveal? besides the emotional clearing. Was that your first session?
I know if you can continue ART, you are on a good road. I do wish you the best and most of all - have patience. ART is literally the only way I have found over a period of many years that can guide you to complete wellness. It takes the guessing out of the picture and each step as determined by ART will get you a little closer to success and health.
Hope you can share some of your experience.
Take care.
P.S. What I really mean to say is that ART will eventually answer your questions raised above. The answers will not all surface at once, but you will get to the missing links. The body has its own way revealing itself; i.e. as you remove one layer that was an obstacle to healing, the other one will surface. Sounds complicated, but there are many different layers to our body. Wish it would work like turning an old sock inside out to see what gave you the sore on your foot!
[ 03. June 2006, 02:10 PM: Message edited by: GiGi ]
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GiGi
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Kelmo, I am using that type of thing, and am always interested in what others know. Please post your info.
Thank you.
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AZURE WISH
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What does your llmd think?
I would talk to him about your concerns about the coinfections holding you back. Especially the fact that you tested positive from bartonella and had good improvement with babs treatment.
Hopefully you have a llmd that listens.
Maybe he is still worried about your gut. Maybe he forgot about your test and expereinces with coinfection treatment.
If you talk to him about it at least you will know why waiting to treat it is more favorable in your llmd's eyes or maybe your llmd will change the treatment plan.
minoucat
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Crime -- just wanted to add that there seems to be a link between candida and estrogen.
It's still controversial (of course), but the main thrust seems to be that Candida overgrowth can cause an autoimmune-like reaction to the sex hormones, particularly estrogen, which seriously worsens (and in some cases causes) PMS sx.
At one point in my LD career I seemed to have an imbalance between estrogen and progesterone. My Gyno said "endometriosis" and said I'd have to have a hysterectomy. My naturopath had treated for Candida and gave me progesterone cream to apply at certain times in my cycle. This helped enormously and I didn't need the hysterectomy.
So I agree with Kelmo that it's worth it to get your hormone balance checked. And treating any imbalance might help get the Candida under control, and vice versa.
lymemomtooo
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Crime, I am so happy that you are doing so well, even if you have a ways to go..YOu and yours have been thru a lot.
There are great answers here.But what mino said about if you have treated other things that may be causing it made me think of your exposure to mold
I would think long and hard about the mold issues. Your detoxing should help but not sure if that is enough..
It can wreck havoc and cause the same symptoms as lyme..I also agree with you about the abx. It may kill the bugs but can be harmful to some..
My daughter can only tolerate low doses, when she will even consider taking meds.
Also just a personal theory here but lyme has been around for a long time..Maybe not the super strains we are living with but it has been here.
And either people had it and never knew, which is possible but maybe it was in check with penacilin. In the 50's, every time I went to the dr with a cold, etc..He came at me with a hypodermic filled with penacilin.
I hated to go to him but maybe he had a handle on this before he knew it existed.
Good luck..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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liz28
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Hi, this is some pretty fantastic advice you've got here.
When you said that you felt better going off abx, and described these symptoms, what immediately came to mind is out-of-control yeast. It can take months to rebuild your system to its pre-Lyme levels. I've never been able to control the yeast problem with just one drug, and diflucan wasn't that great for some reason. It's always required a prescription drug, an herbal extract that contains berberine, and a mega-probiotic. Even so, I can't go more than two days off this protocol without the symptoms returning.
Also, and this is really corny so please just put it at the bottom of your list until you feel like dealing with it, are you able to do any kind of exercise, even walking on a treadmill for 20 minutes every day? Lack of exercise is not, of course, the cause of all your symptoms, but it sounds like your situation may be harder to read because of the need for conditioning. You have no idea, if you were formerly an active person who still thinks of themselves that way, just how fast your body can veer into couch potato-hood without your knowledge, because you don't think of yourself as a person who would voluntarily choose to live that way, and remember how easily you used to be able to turn around a few days of laziness.
I'm a real running snob who always scoffed at walking (hmmph), and also would always say, arrghh, I have to feel perfect before exercising or it will just lead to a relapse. But sometimes I'll start on the treadmill with a sore throat, stomachache, headache, lowgrade fever, et cetera, pad along like a tortoise, and in an hour the symptoms will be gone. Walking will also start building your aerobic capacity again, so you can make the jump to more strenuous exercise when you are ready.
Maybe others experience babesia differently, but for me it has always been clear-cut. There is a lowgrade fever that periodically spikes, causing seizures, obsessive thinking, vertigo, dizzyness, headaches, and sweating. Sleep alternates between insomnia and daytime exhaustion. Some of these symptoms became so familiar, I was shocked when certain babesia/malaria drugs abruptly made them lessen or disappear. You mean I don't actually care about whatever I was up in arms about? Uh oh.
It's a bit confusing that you still herx, though, if there is no more Lyme left. If you are still experiencing a real herx, a flare up in response to an anti-spirochete medication, then there's still Lyme. If you have not tried a cyst busting drug yet, and have some free time available for the possible herx, give it a try on a pulsed schedule. Flagyl is no picnic, but it can knock the socks off Lyme & Co.
I have also found mepron to be a horrible, horrible drug to take longterm, and also find other drugs to be working much better on babesia. That's not to be an ingrate--mepron saved my life, and is still holding things together as I experiment with other options. But it is viciously harsh on the body.
This is so old-school, but I'm a sold believer that the cephalosporin/macrolide combination should be tried for at least a month to see if it makes a dent (and it's always a month before it kicks in). Cephalosporins are the only drugs that have ever truly held my Lyme in check--that's really not true for everyone, but if you've never ever tried it before, and are still having problems, it might be worth a shot.
And if you've got a real-deal LLMD, you could always try heavy metal detox for a week just to see what happens.
And finally, ketek really can be a great drug. Yeah yeah, it's harsh, but mepron and flagyl are just as bad, and people accept them as necessary evils just because they are more familiar. There's no rule saying that if you decide to try an antibiotic, you have to take it for six months or you didn't give it a chance. Ketek can initiate a herx within two days.
As always, please be advised I'm not a medical professional in any way, and am just offering suggestions to add to the conversation.
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TheCrimeOfLyme
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Hi all, thanks for your replies. Im trying to remember them so I can answer them.
Gigi, when I first went to Dr. G, I seen "E" there, who I didn't know did ART testing, by only by means for allergy elimination. E didn't know what lyme was, etc. I had to guide her. Had I known this before the appointment, I would have insisted on Dr. G, but E was a cheaper route to go.
She did find bartonella once, then retested twice and it was negatiev. Then she found sia once, retested twice and that was negative. She found lyme three different times and a sensitivity to caffeine and chocolate, as I had expected.
I do follow up, but this time with Dr. G. I am working with someone who does applied kinesiology up here - who found the same exact thing but got more in depth. Plus, found massive yeast. Only working with him until I can go back to Dr. G.
I had trigger point therapy done and that totally knocked the socks out of the pain in my jaw/neck/shoulder area. That only comes back when I herx or flare and I was told it was actually toxins of lyme, not the lyme itself.
Lymemomtoo- I KNOW there is mold here, and where i work. The work, I got sick after a month working there. Now that I am well "enough" so to speak, I am getting a new job. I belive that building has been a major contributor to my getting sick. In fact, even when at my sickest, I got better over the weekend when I didn't work. Now, on the weekends, I feel PRETTY darn normal not working there.
I think I may have somehow became used to it, though it still makes me sick. In my home, I can smell mold but for the life of me, I cannot locate it. A pinpoint seems to be my hallway and living room- I just don't know what the culprit is here, but I do feel MUCH MUCH better here than at work.
When I travel, I feel NORMAL- so I know environmental crap is definately playing a role. I moved into this house to get away from mold-surprise.
Liz, thank you for all of your suggestions. I think yeast all the time too. I DO know I have it. I remain on diflucan because anything stronger ( even herbs) HOLY COW. I took oregano oil once. HAHA... bad, it was all bad. I herxed to high heaven, but I do liver flushes and probiotics and will
start doing other stuff for candida soon as well. I do want to try on a cyst buster.
kelmo- yes, I would be interested. Could you email me some information on that. That is my most horrible time. My flares and herxes are NOTHING compared to what my period puts me through. It's insane.
Im definately just going to keep going about this slow, and go back to Dr. G and incorporate more and more alternative stuff into my plan. Im so CLOSE it's starting to depress me.
Someone asked if I exercise. No. I'll be honest, I don't. I had orthostatic hypotension ( which is now gone, by alternative means) for so long, that any exercise set that off, so I avoided it like the plague.
I think a major reason why I had orthostatic hypotesnion WAS from deconditioning. I DO use my exercise bike and realized it did notflare me.
I used to be a runner , running is OUT. I can walk though thank god, so I can start doing more and more types of exercise.
The poll seems to be sia. For the longest time, I had thought that until I tested PCR for bartonella. I STILL think sia. I know I have lyme, but my herxes are almostnothing.
I took some oral antibiotics just to "see" what would happen.. and nothing did. But something is making this hang on, its just finding out what
and with more indepth ART testing, I think I will.
thank you all for your replies. Jodie
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
Crime, you had the best improvement with fluconazole? you continue with 100mg/day?; do you herx with it?
about the cyst burster i think that is the weak point of bb; is imposible maintain all the life (years?) of a spiroquet under antibiotic, always find a site without antibiotic where clean the efect; antibiotic look thinked for bugs with minutes of duplicate; and spiroquets can slow its metabolism until zero, invincible; but cyst are quiet and disrup with busters in hours...
Posts: 108 | From spain eur | Registered: Apr 2005
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do you still have food allergies? how long did it take to heal your leaky gut and how did you do it? i have leaky gut and i can hardly eat anything without a food reaction.
Posts: 70 | From Quakertown, PA | Registered: Sep 2005
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TheCrimeOfLyme
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GoingCrazy,
I used allergy elimination (NAET) to get rid of the reactions to foods caused by the leaky gut.
For the leaky gut itself, I HAD to stop oral antibiotics- only take shots now. I used L-cartine and L-arginine ( I think I spelled those right) and did liver flushes as well as massive doses of probiotics and nystatin and diflucan, as well as cold pressed coconut oil and oregano oil.
and simply avoiding the foods that I couldn't eat- though at that time, was just about anything. The biggest improvement was the stopping of oral antibiotics. The second was the NAET ( allergy elimination technique).
Not many perform this, and some consider it hocus pocus, but it WORKED. i can now eat just about anything without ANY problems. However, caffeine- forget it. I was desensitized and its still a big problem, so I just dont ingest it
I also have a problem with tomatoes still, but Im working through it.
But.. other than that, I can eat anything. Mashed potatoes freaked my head out big time the other day ( felt drunk, got neck pain, total mess) after I ate them, so I know its time for more NAET probably.
I hope this helped you some! I saw an alternative practioner during this tiem as well who did contact reflex analysis and she usd certain supplements and "frequency waters" that my body tested strong for.
After 18 months of getting no where with my leaky gut ( not even with my LLMDs because they didnt kow what was going on).. only alternative methods have cured it.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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TheCrimeOfLyme
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Ant, I had the best improvement for orthostatic hypotension with diflucan. It did nothign for my lyme, but it cured my orthostatic hypotension- a symptom of lyme, among other things.
I still take it. I take 100 mg a day, yes. I had GREAT improvement on it. Ok, actually, I felt the improvemetn once I quit taking it for a while- I was herxing to high heaven on it ( or having yeast die off) technically.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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