lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Ok, so it's official.
One year antibiotics free.
No relapses, only improvements and a return to being a normal person and feeling 'normal'.
A few lingering symptoms - mainly tinnitus, and I still take Flexeril at bedtime. Despite daily rebounding, massage therapy, my shoulders still are a bit tight. LLMD thinks they are related.
I continue to take Cat's Claw and acidophillus, and will do so for the forseeable future. I am also on a very exhaustive supplement regime (including of course, Magnesium), that I am committed to taking for the rest of my life.
I am currently also giving myself weekly IM Magnesium injections. My levels have returned to the low end of normal, so hopefully I won't have to do those forever.
I try to exercise 4-5 days a week on trampoline and treadmill, and although my diet isn't completely 'no yeast', I do watch my carbs and avoid pure sugar like the plague. But as you feel better, sticking to it gets kind of tough (and if I go off the wagon, my friend Candida returns). But sugar no longer makes me dizzy or feel drunk, so I must be winning the war.
From where I was 2 1/2 years ago, (and even 1 year ago when I was deemed 'ready'), it's a situation I can live with. And with time, I hope it resolves like everything else has.
I've come a really long way even in the last year since I've been off.
I was fortunate to be able to work throughout my entire illness in an extremely stressful job. I work about 45-50 hours a week, and commute an hour each way.
Early on there were many days I couldn't make it to work, but this experience has shown me how wonderful my employers are. I couldn't have asked for more supportive bosses.
Just wanted to share my good news, because yes, people do get better. I'm still around, because without this board I would still be trying to figure out what was wrong with me (or in a wheelchair, or in a psych ward, because after all, it's all just in our head and stress related).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
can you briefly summarize your treatment with antibiotics before you went abx free? congratulations, by the way, and thanks for posting.
Posts: 204 | Registered: Jan 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Hi Julie-
Wonderful news! Glad you are committed to the mag. I think it has made a huge differnce in my recovery too. I think my llmd will be taking me off abx/diflucan in a few months.
Do any sailing? I was over at Metedakonk a couple of week-ends ago sailing! Very nice area.
posted
Wonderful to hear, esp for us newbies who keep wondering if we'll ever see the end to this...
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Thanks for the encouraging news. We all need to hear stories like yours.
In addition to posting briefly the antibiotic regime that you were on, would you mind posting how long you were ill before being diagnosed and what your symptoms were?
Thanks so much...and STAY WELL!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Thanks for your kind support.
I'll try to keep this brief... (but how could it possibly be??)
Late in 1994, I came down with a flu like illness. My body hurt so bad, bone pain, fevers, chronic runs and dizziness. I was put on antibiotics briefly for a 'sinus infection', and after that, my stomach got worse.
I started the doctor shuffle, and was finally labeled with 'Epstein Barr'. I was told I had mono and it would take me at least 6 months to recover. It took about 2 years. I bought a water bed to get some relief. I was never the same again.
(I've since found the tests that the specialist ran - they never ran an EBV test. It was a label they used because they had no other answers).
Whenever I faced stress, my glands would swell. My knees cracked like a bowl of Rice Krispies.
Fast forward 9 YEARS to June 2003. I was under a lot of stress at work. Then I found the tiniest tick I ever saw in my bed. I then noticed I started getting dizzy at night, and the bottom of my feet got ultra sensative.
By July 4th, I was so dizzy I was vomiting if I moved off the couch. I went to a quack who said sinus infection and put me on Levaquin and Allegra D for 2 weeks. During which time a brown circle broke out on my right shoulder. I started to feel better after 10 days, but ran out of abx. I went back for more and they gave me another week. The second I stopped Levaquin, wham with the dizzies. Only now, the neck pain started. And my stomach was a disaster... And around 7 pm each night, I got hit with panic attacks and migraines. If I went into a large space, like the foodstore, I was doomed. My right eye was swollen like someone punched me.
I went to my PCP (non Lyme literate) and demanded a Lyme test. They did a PCR and it came out negative...
The summer went by and I started researching and found Lymenet. And demanded a Western Blot and test for coinfections. All 'negative.
By September, I thought my life was over. Went to ER, who sent me to Neuro, ENT, Pain Mgt. At this point, the floaters were so bad I couldn't go out in the daylight, nor could I manage to get off the couch many days. I spent most days with an ice pack on my neck and right arm. The swelling in my right eye spread to my whole face.
The CAT scan and bloodwork indicated infection and they put my on Levaquin and said get to ENT and Neuro.
The Neuro (god bless him) put me on low doses of Valium (2mg) to help with the dizziness which by now was unbearable.
The ENT kept me on Levaquin for 'chronic sinusitus' (and of course I herxed my brains out). My sinuses slowly responded, but I started to develop sciatic pain and tendon pain - bc of course they don't tell you quinolones cause tendon damage. But the neck pain and floaters were unreal. In December, I had a cervical epidural to help deal with the neck pain.
I was finally taken off Levaquin around Christmas.. And had another sinus infection in 6 days. And was put on Augmentin. And thought I would DIE!!!
Again, I demanded another Lyme test from my PCP, this time by IgeneX. He said let's send you to another neuro.... who at first glance said I sounded like I had Lyme, and changed her mind once she saw past test work. An MRI revealed lesions of unknown origin... And of course she wanted to do a spinal to 'rule out' MS.
And that's when I ran to the nearest LLMD. I knew it all along, but I guess I didn't want to face it, or was too braindead to get it at the time.
I was put on 600mg Rifampin and 375mg flagyl. From day one. Clinically dxd on the spot with Lyme and Bartonella. My Stryker panel showed almost NO CD57 Natural Killer Cells. My IgeneX WB was CDC positive, although the PCR from MDL drawn the same day was negative. And so were coinfection tests.
I herxed my brains out and went through all the fun stuff we all go through. My muscles were in such bad shape, I had lumps from muscle spazms all over the back of my head and my shoulders. Weekly Trigger point injections of lidocaine finally took care of the situation. Who'd think you'd be happy about getting shots in the HEAD??? I was.
I went through all the scary stuff. Heart herxes, dizzies, pass out tired, blood sugar problems, UTI's from yeast... all of it..
My LLMD combines traditional treatment with homeopathy. She put me on an exhaustive vitamin regimen (www.bodywise.com, oil of oregano(from www.youngliving.com), and I used the foot detox patches every night for a year (www.real-world-health.com).
Instead of just stopping abx like some here do, my transition was sooooo slow I don't think my body had time to realize. After 6 mos of successful treatment, continual improvement, she added in Cat's Claw (Prima una de Gato from Allergy Research). I herxed off 1/3rd capsule in about 30 minutes. And cut my Rifampin dose in half. And a month later, cut the Flagyl dose to weekends (although I think I pushed it to 4 days a week, and then cut back to weekends).
And then started cutting Rifampin dose by 1 pill, every 2 weeks. And when I got down to 1 pill a week, cut flagyl to 1 day a week. And on November 10, I took my last pill.
I was a bit scared to stop, and my body was still quite messed up. I still was herxing, albeit slightly, every month.
Last December my LLMD told me the benefits of using a mini-trampoline (in terms of keeping body loose and detoxing) - I bought one and never looked back. My blood sugar is now normal and I no longer get loopy after eating. And I seem to no longer herx.
If you've actually read this far, hallelujah!! Many here helped me and held my hand when I needed it. And I have you all to thank.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
congrats, julie!
one question - how frequently do you use the minitrampoline, and for how long each time?
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Heiwa,
I started with just a few minutes each day. I now do no less than 20 minutes, but some days do 30-40 minutes, and even follow up with treadmill.
Google rebounding - it's effects on your immune system are astounding. And really help those clogged lymph nodes (which I've been very prone to for the last 10 years).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Thanks for posting this. I have a couple of questions for you if you don't mind. Did you take 600 mg of Rif in one dose, or 2 x 300 mg, and did you start off at a lower dose, or just right to the max?.
I am having a problem with my PH. I read before that you use organic lemon oil to raise yours. I tried 4 drps in some water, but it made me feel kind of crummy. Did your Dr say that the oil was better than the juice? I read somewhere that lemon oil has an ingredient in it that can cause cancer. Did your Dr mention anything about this?
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Micul,
I took 300mg Rifampin, twice a day. At first, I started in full dose, but within 10 days my skin was on fire. I had to stop for 3 days, and then restart at 1/2 300 mg capsule once a day and gradually build up to full dose.
I use Lemon Oil to change my PH to more alkaline. I originally started using at my LLMD's suggestion for good kidney cleanse (and to break up the monotony of drinking 10 16 oz. glasses of water a day), as I was very prone to UTI's (most likely yeast related).
I only use oils from www.youngliving.com. Totally pure. And no, I am not selling anything. As far as I know, no health risks.
I would imagine you could try doing the same thing with real lemon, but it would take an awful lot of lemon since lemon oil is so concentrated. I can't imagine why you would feel awful, unless you have some type of citrus allergy. But I would definitely let your Dr. know about it.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
YEA! Your report makes my heart sing.
I commend your effort to take control and help YOURSELF to get well (the exercise, attention to your diet, etc.)!
Thanks for sharing your success story.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hey Marnie!!
Despite my successful treatment, it wasn't until last April or so that I had my LLMD focus on my Magnesium levels (because of all of the information you've here for us).
RBC tests indicated significantly low levels when tested (at my request), and we begun IM therapy every few weeks. It worked, but not enough. My muscles in my shoulders would still really cramp up after about 3 weeks. And my b.p. would creep up for no apparent reason, despite being on a beta blocker. So we bumped it to an IV every 3-4 weeks. After just one IV, upon testing one month later, my levels returned to low normal. And no more muscle pain (and my bp remains in healthy normal ranges, and my periods are no longer endless, heavy, and painful).
I have you to thank for this!! Magnesium really is the magic bullet. Even if you do everything else right, if you don't address Magnesium depletion, you won't recover.
Everyone pay attention to the invaluable information Marnie has made available to us - it really is true!! Thanks again!!!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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I'm so happy for you that you are getting your life back!
I have to echo the sentiments of the folks who are at the beginning of their treatment. I've only been on abx for 6 months and just had a med change.
It's so good to hear that there might be a successful outcome at some point in the future. I know it varies from person to person but your post really gives us hope.
Thanks so much for taking the time to tell us your story.
Posts: 105 | From CA | Registered: Apr 2005
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posted
Hi, you mentioned that you have used detoxing footpads for a year. Did they ever get white? I have used them now for 2 months and they are night after night as brown as in the beginning. Posts: 35 | Registered: Oct 2002
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liz28
Unregistered
posted
Thank you, Julie/Lymeinhell. Your posts have been literal lifesavers.
Also, thank you so, so much for telling us the absolute longest we may have to be on rifampin once we start it. You are saying that a year is the absolute longest, right? And also, you seem to be saying that once bartonella is addressed, if it is your only co-infection, then the Lyme melts away over time.
It's interesting, too, that when you finally went off longterm meds, your immune system was back online, instead of being permanently damaged. That's a huge fear for me, after five years of this junk.
BTW, am thinking about training for a local marathon next year. Kind of a long shot, but the training will produce benefits in the meantime.
P.S. Did the magnesium help your insomnia? Which symptoms did it get rid of?
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Eric, I've been using the detox pads since started treatment in June -- every night some places on my foot and two or three nights a week over my entire foot.
Mine are still as yucky as they were almost 5 months ago.
What type are you using? I get mine from ebay, a seller I really like.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
You should get someone that isn't sick to try the patches for a few nights and see what happens. Maybe they get yucky just by being in contact with skin? Just cause they turn yucky isn't proof that they are actually doing any good.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Liz,
Magnesium took care of muscle cramps, high blood pressure caused by a fast heart rate and occasional heart palps (palps gone, but pulse would go to 100), sleep issues - omg - get an IV Mag or even IM. You sleep like the dead for days!!! I'm going to get my hormones checked again and see if they've normalized now and suspect they have.
I'd say the Bart was gone in 4-6 months. And the rest of the stuff I had was really yeast. I really do credit my LLMD for going for Bart treatment from Day 1 (despite negative repeated tests). I think my body had sort of learned to 'live with Lyme', but the Bart pushed me over the edge.
I think my immune system was tricked into taking over because the withdrawal from abx was so gradual. I was terrified to go off abx - at that point I was having some 'normal' days, but still had moments that were kinda strange. But I think my LLMD felt abx did all they could. My CD57 count hasn't recovered though, but the jury's still out on the real meaning of that.
I do feel better now than I have in at least 10 years.
Micul - everyone needs to detox, even healthy people. In this polluted world we live in, all the pesticides we eat, chemicals we inhale from the carpeting in our homes, the teflon pans we cook in, the fluoride in our water, the paint on our walls,.... it's endless. Even healthy people would turn the patches black. And I know a few that have used them just 'to see what happens'.
I have no doubt in my mind that the patches helped me recover. The difference was like day and night. You're free to make your own decisions.
I also employed a lot of essential oils to help address some of the symptoms that make life so annoying. Especially for sleep. I still use them, although I no longer need them for most things - but like Pavlov's dogs, am so trained to associating the scents with relaxing and falling asleep, I still use them (unless I fall asleep without them). And on weekends sleep 10 hours without getting up once!!
Antibiotic treatment, lifestyle changes including exercise and diet change and requiring myself to get min. 8 hrs a night, detox, parasite treatment**, and magnesium restoration. It's pretty much the standard program at my LLMD's. It worked for her, and seems to have worked for me.
** I failed to mention in my earlier posted that I also used 'The Zapper' for 9 days for parasite treatment last April. From obvious evidence , it worked... and I gained 5 pounds in a week.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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I agree that detox is extremely important. I do a lot of things that I know actually do work, like chlorella, IV glutathione and mag, steam saunas, and exercise. The rebounding that you mentioned is a good tool that helps with detox.
I do question the podi patches though. I am not saying that they don't do anything, just that the jury is out. There use to be a lot of threads about them in the past, but it seems like most people stopped using them because they weren't getting results. Not to mention that they aren't cheap.
Best wishes for your continued success.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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My kidney/frequent urination problems have become much better since using the pads. I was skeptic when started to use them and thought that maybe they get always dirty when they are in contact with the skin. So I tried them on my wrists overnight. The next morning I took them away and they were totally clean - no brown colour. So I suppose there has to be something in them.
Posts: 35 | Registered: Oct 2002
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Eric, The pads you use are the same ones I do. The podi patches (which cost a lot more) have an odor I absolutely can't tolerate, because my sense of smell has become so highly exaggerated with Lyme
Anyway, you might want to do an ebay search for your patches, Eric. Maybe you can find a better price...just a thought.
I'm so glad they help you. I would almost always wake up with debilitating headaches; those are completely gone now. I really think they've made a lot of difference for me already!
Gary, I just heard about this new UK show where contestants end up exposed to Lyme disease carriers. How horrible is that!
posted
I�be been exposed (for instance) to lead quite a lot. Here is a study about lead/kidney failure. Maybe that is why my kidneys are now doing better after using detox pads for a long time.
Is kidney disease an environmental disease? TAIPEI, TAIWAN. Exposure to high levels of lead may result in kidney failure. Now medical researchers at the Chang Gung Memorial Hospital report that long-term exposure to low levels of environmental lead may also be associated with kidney disease (chronic renal insufficiency). Chronic renal insufficiency manifests itself by a decreased filtration capability and an increase in creatinine level in the blood. The study involved 32 patients with chronic renal insufficiency (serum creatinine levels between 1.5 mg/dL and 4.0 mg/dL) and slightly elevated lead levels. After a 12-month baseline observation the patients were randomized into two groups. The first group received weekly, intravenous EDTA chelation treatments for a two-month period while the second group received no treatment and acted as a control. After chelation the mean body lead burden decreased from 1.23 micromol to 0.19 micromol in the treatment group. The rate of progression of renal insufficiency also slowed remarkably in the treatment group with a marked drop in serum creatinine after the treatment and a levelling off in the following 12 months. The creatinine levels in the control group continued to rise. The researchers conclude that long-term exposure to low levels of lead in the environment may lead to chronic renal disease. Lin, Ja-Liang, et al. Chelation therapy for patients with elevated body lead burden and progressive renal insufficiency. Annals of Internal Medicine, Vol. 130, January 5, 1999, pp. 7-13
Posts: 35 | Registered: Oct 2002
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
lymeinhell,
I'm so happy for you.
Please, if I were to start detoxing, what do you suggest? I'm taking mephron, zith & Bactrim DS. Have been in aggressive treatment for three years and another year before that of not so aggressive tx. Any ideas of how to start?
thanks hopeful23
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I use Kenrico patches as well. I think there is a cheaper source in the US at 85 cents per patch. They are www.HealthMarvels.net. Those are the ones that I use.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hi Hopeful,
I'd check with my LLMD first before adding anything to my treatment plan. But the patches might be a good place to start. (They were recommended to me by my LLMD about 5 months into treatment). I believe she asks all her patients to try for at least 30 days. If you need some info, try www.podipatch.com and bring the info about detoxing to your LLMD.
You could also try using a mini-trampoline. Inexpensive ones can be found - I got one at Bob Kislin's ( NJ sporting store chain) for $30. Of course you get what you pay for and the springs broke after 6 months. But still worth using.
Good luck to you.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
lymeinhell,
I will try the patches, although I don't understand how they can be for pain AND detox. Maybe I don't understand detox.
can't do the trampoline, however. way too dizzy for that.
any other ideas?
thanks again hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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, it worked... and I gained 5 pounds in a week.
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