Topic: Have you had a good experience with Levaquin? (really scared)
Judie
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posted
I need to hear some good stories about the drug. I've read the horrors and they aren't helping me.
I broke out in a full-blown bartonella rash last month, so I need to try to get this under control.
It's the only antibiotic I'm not allergic to that treats Bart and I'm about to start it.
I'm scared. I decided to wait until after the weekend for in case I react strangely.
Please, I really need to hear some good stuff about the drug. Only positive experiences please.
I kind of feel like this is my last hope.
(I already know about magnesium)
Posts: 2839 | From California | Registered: Jul 2012
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surprise
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I have a positive experience. For you Judie, I'll type it out, but I'm dead tired.
First antibx I ever took, because Bart came up high positive while waiting for further Lyme testing.
1x a day dose. I took vitamin C daily/ orally, probably 2-3 grams, also Oral magnesium supps (away from Levaquin)
And every single night, EVERY night, forced my self to do a dry body brush, then sit in a hot tub filled with 4 cups Epsom salts bath. For 30 minutes. I very much believe that got the magnesium in my leg muscles, feet, overall. And a sweat.
No weight lifting. I did walks.
I did 2 separate rounds of 6-7 weeks of Levaquin. No horrible herx stories- just odd- like I wanted to be left alone. HTH.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Last hope? Aren't there any other treatments like Buhner herbs, Cowden, Byron White - I'm just asking - I personally have no experience with bart.
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Judie
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Surprise - Thank you sooooo much for sharing your experience even though you're dead tired. I REALLY appreciate it.
Robin - Herbs aren't working. I tried. Too many allergies and just not cutting it when I'm not allergic.
I'm sticking with conventional for now.
I've had too many problems trying alternative treatment. That's something I just don't want to think about right now. Too many failures.
Posts: 2839 | From California | Registered: Jul 2012
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droid1226
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Best antibiotic hands down, for me. I prefer the IV which is cheap, but both oral and IV versions took bart down and made instant change.
Idk what happens after about 4 months of it, it stops work....well, I do know. But my favorite with least harmful impact. Keep up the mag
Apparently, others feel different. Just my opinion.
2roads
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posted
Hey Judie. I'm on it now for some funky ear and neck and throat infection. It's been dormant since May and now back again. A little discomfort over the summer in between. Tried zith in May but it lingered. So, here we go with Levaquin. I'm happy to have it. Will likely take my refill.
But now on to what your talking about. I took it for 7 months a couple year back under dr B. I had no discomfort until about month 4. Doc b said to push through it. I did, and the leg pain went away. I only stopped it because it had done its job.
So, please don't be afraid. If you feel discomfort you can back down without harm,IMO. Also, any pain didn't mean for me I had to stop. It went away on its own while still treating. No residual problems years later.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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TNT
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I only took it early into treatment when I was still stronger, but I definitely feel it helped (I'm not sure how it would affect me now). I was on it for 3 months straight.
While on Levaquin, I was more relaxed and in my element-felt like myself again when I was on it.
No trouble with tendons or nerve stuff while on it (except some nerve stuff WHEN I WAS ALSO ON FLAGYL). I did do pre-loading doses of Mag-Tab SR before and while on it (the magnesium supplement recommended by Dr. B in the treatment guidelines).
Levaquin helped with the random shooting nerve tingling that would momentarily come and go all over my body-especially in my face and forearms.
The mistake we made was to add my nemesis drug, Flagyl, for the 4th week of each month while on Levaquin. With Flagyl, I felt HORRIBLE during that time! (I felt mean and was so irritable. It gave me depersonalization as well). Flagyl was my greatest mistake drugwise. It really set me back each time!
So, don't add Flagyl with the Levaquin.
By itself, I would say go for it! I think it really helps with certain strains of Bart.
Just take the usual precautions with Levaquin; and take plenty of magnesium, and R-lipoic acid, away from your Levaquin dose. R-lipoic acid is protective for the nerves and I believe I remember Dr. H recommending that in his book.
Also, if it upsets your tummy, maybe check with your doc to see if he recommends taking it with food.
I really wish you success!
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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Judie
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Droid, 2Roads, and TNT -
Thank you soooooo much for your stories. It's really good to hear some success with the drug.
Droid - My doc is going to reevaluate in 2 weeks and I think I may be going on IV. I wouldn't be surprised if we're just doing a trial run with the orals to make sure I'm not allergic first. Good to know that the IV helped!
2Roads - So good to hear there weren't residual problems! I think that's one of my biggest fears.
TNT - No flagyl. Got it.
I totally have this zapping, nerve pain too! It's awful. It feel like I'm touching an electric cord, but inside my body.
I really hope it gets rid of it. My eyes have been a mess too.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
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Judie- I did what surprise did.
Major mag and epsom soaks and I was ok
Had to stop because doc wanted treat babs.
Was OK.
Had bladder inf about month back. Didn't preload with mag. 10 days levaquin. Feet got nerve issues. Felyt like they were always itchy or electrical.
Upped mag and is now gone.
Mag is very very important. I was taking 1000 mg elemental per day in 4 sep doses. (4000mg mag malate)
Good luck
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Everyone is different. I haven't taken levaquin, but Flagyl is a miracle drug for me! I was on it for two weeks for another reason, and almost all my pain went away! I was off it a few days and it all came back with a vengeance.
I just started it again yesterday. I can't wait to see if it does it again!
Posts: 27 | From North Carolina | Registered: Aug 2014
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Judie
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Thanks Greta and AML94.
After much anxiety, I just took my first dose of Levaquin. I feel a little nausea, so I'm making ginger tea.
I hope this is all that happens. Wish me luck!
This whole experience is terrifying me, but I'm doing my best to keep calm and think of how this med may help some of my worst symptoms.
Posts: 2839 | From California | Registered: Jul 2012
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surprise
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posted
Let us know Judie-- good thoughts-- don't forget your magnesium and vitamin C later...
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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2roads
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Hey Judie. I'm on day 6 now and plan to renew the script as my upper respiratory infection is about 70% better. But, like is aid for TBDs I have been on it sooo much longer.
The only thing I noticed was I am more susceptible to the sun with a sunburn. Just be sure to lotion up if headed to the pool.
That's about it. Nerves can make u nauseated so do try to be calm.
Hugs
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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TNT
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Originally posted by Judie:
"After much anxiety, I just took my first dose of Levaquin. I feel a little nausea, so I'm making ginger tea."
You sound like an ol' pro at this, Judie. (Too bad, huh!) Ginger tea is great for nausea.
When I started Levaquin, I had a little nausea too, but it soon passed...
Wish I had known about ginger tea then.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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Judie
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posted
Yep, I've just been sitting here for 1 1/2 waiting to see if anything weird happens. So far, nada...
Does anyone know if the exercise bike is gentle enough exercise with levaquin???
TNT - "You sound like an ol' pro at this, Judie. (Too bad, huh!) Ginger tea is great for nausea."
Aw schucks. That made me laugh!
Ginger tea did help.
2roads - Thanks for the sun reminder! I totally forgot about that one. I was in the sun yesterday since I'm off doxy. I'll be more careful now.
Surprise - Thanks again for your good thoughts! Just knowing I'm not alone in this is REALLY helpful. Sometimes I feel I'm going to lose my mind from the emotional strain.
Posts: 2839 | From California | Registered: Jul 2012
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TF
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posted
I did totally fine on Levaquin for 30 days. I was lifting light weights as I was able during that time also. So, the exercise bike should be fine. My lyme doc didn't put any restrictions on me regarding exercise while on levaquin. In fact, he wanted me to exercise.
I never herxed or had any other side effects.
If you haven't looked at this webpage regarding levaquin, take a look:
This tells how to take it correctly. Also, if you start getting tendonitis, what to do.
So, if you are alert to the warning signs, you should be fine.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lymeboy
Unregistered
posted
I took Levaquin for many months and I was ok. I took it 3 different times. It was one of the biggest helps for Bart. wiped out my anxiety for a good while.
One of the times I did it, I had a small scare with some pain in my shins so I stopped immediately. I had missed a week or two of Magnesium so that could have been it.
you MUST stock up on Magnesium for at least a week before taking it, and then you have to take it every day, away from the meds. The threat is real with Levaquin but it really seems to be a big help for Bart.
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Magnesium to the max or you will pay. Oxide is not good enough.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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GretaM
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posted
Thanks for the update Judie.
Glad it's OK so far.
My doc cautioned me strongly regarding exercise.
No impact exercises and no weight lifting. No starting of a new exercise program or routine.
Light easy walking and swimming were OK.
But I had tendon inflammation issues in the past, as well as prone to ligament issues so I was cautioned strongly.
I forgot to mention I had magnesium cream I would rub on my Achilles and backs of my knees every night also while on levaquin.
(for bart...for the bladder infection I dropped the ball)
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
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posted
The good: No tendon pain so far
The bad, questionable or possibly good:
Okay, I'm now DEFINITELY experiencing something. I hope it's a herx.
1) My throat is sore. I have the crimson crescent common to CFS. I've had these before.
2) My whole body feels extremely heavy. I generally feel muscle weakness, but this is A LOT. It feels like there are lead weights attached to all my muscles, including my eyelids.
It's a bit difficult to speak. I'm talking, but slowly, like the muscles don't want to move as quickly as I'd like.
I got some chills earlier and decided to take a warm bath. Even in the tub, my body feels heavy, not the floating feeling one usually gets in water.
Even typing is weird. It's an effort to lift my fingers.
I've had similar symptoms to this before, it just feels very strong and it must have to do with the levaquin.
TF- That's a great link! Thank you!
Lymeboy- Great to hear how much it helped!
Lymetoo- Magnesium, yes. I'm taking a lot away from the levaquin
Greta- Where do you get the magnesium cream and how are your eyes? Did the levaquin help your eyes?
Posts: 2839 | From California | Registered: Jul 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Judie
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posted
Yep, it wasn't easy to get through the evening feeling 1000 pounds.
I fell asleep faster than I usually do which was good though (one of these infections gives me bad insomnia).
I woke up this morning with less inflammation! YAY!!!
I don't seem to be allergic so far. I just took my second dose and I have a little nausea like yesterday, but nothing unbearable yet.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
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Hi Judie-sounds like a bart herx to me... Glad it is better today. The slow speech thing happens to me with enceph. Total inflammation in the brain for me.
Glad you are already giving bart a kick out the door. I know others say bart doesn't give a herx but I disagree.
Also some say bacteriostatic vs bacteriocidal and is levaquin cidal or static? Not sure...
But I also think bartonella like organisms and bartonella have similar symptoms but respond different to different meds.
So either way you are kicking one of those out the door. That is great!
The cream was from Kirkland-magnesium sulphate cream.
Not sure how your CBS gene is...
I am using a magnesium oil spray now called Life-Flo pure magnesium oil. Magnesium chloride brine.
It is great and works good too.
Right on my Achilles. Spritz spritz then rub it in.
Helps tremendously with cramping calves etc.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
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Greta - How are your eyes? I remember something about your eyes when you went on a quinolone.
Yes, this does seem to be a herx from bartonella or BLO. I've never tested positive, but I've had the red streaks for some strain. Who knows what levaquin is hitting.
Good question about static or cidal. I remember looking it up awhile back. This blog says it's static for bartonella. I can't take the cidal ones.
I have some CBS genes problem. I can't remember which. I'll have to look it up. My genes definitely play a role in this. I lack the genes to process rifampin and gentamycin which answered why rifampin gave me so much problems.
Posts: 2839 | From California | Registered: Jul 2012
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Judie
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Last night, the 1000 pound thing happened again. I wonder what makes my body feel that particular reaction.
I'm about to take my 3rd dose. No change with the eyes yet. I'm hoping it will help them though.
No allergies or pain. I hope this lasts through the weekend since my doc won't be available for emergencies.
So far, not too bad though.
Posts: 2839 | From California | Registered: Jul 2012
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TNT
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I'm so glad it's going well for you.
What do you do for the CBS mutation? If you are homozygous, that dumps most of your methyl groups or donors down the drain and then you have trouble methylating to detox and making some neurotransmitters.
I don't know how that affects the ability to process certain drugs, but could imagine how Rifampin would be harder on you (because of reduced ability to make hormones and to detox).
I eat raw yucca to address my heterozygous CBS mutation. Yucca soaks up the ammonia so the deficient gene doesn't have as much of a load. I think that's also why my doc has me taking P-5-P, but not sure.
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Judie
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TNT - I like yucca! I should get some.
You got me digging up my gene info.
I'm homozygous for CYP1B1 (Cytochrome P450 1B1) and some others. Yes, rifampin was a NIGHTMARE. I lost my sense of hearing and touch, then I started to hallucinate. NOT GOOD. There are a couple other drugs I'm never going to take that are associated with this along with rifampin.
It's also mentioned in Grace Ziem's paper as one to avoid:
I haven't looked at the list for awhile and there's an area of drugs I should do WELL on. One is cipro of all things. Maybe that's why levaquin has been a breeze so far.
I'm currently not taking vitamins for MTHFR and the other gene problems. I did it for a year and stopped a bunch of supplements recently. I seem to do better with less, but p-5-p was one of the along with Methyl Guard and folapro.
I'm doing other things for detox like nettles tea, whey protein, and green clay soaks. Those seem to be helping more than anything.
Posts: 2839 | From California | Registered: Jul 2012
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posted
All interesting comments re Levaquin - thanks to all! It answered questions I had wondered about. Levaquin is a very "powerful" drug and must be treated with caution.
I now have yet another new LLMD (the very LAST one in my city!) after federal agents (FA) with badges and holstered pistols ORDERED my (now ex) LLMD "drop all of your Lyme disease (LD) patients now or you lose your MD license in 48 hours" (she was in "hiding" as a "pediatrician" but apparently not "hiding" well enough).
The FA's probably noticed her youngest patient was 16. She should have used a specialty other than "pediatrician" on her on-line bio.
I plainly heard all that was said as I sat waiting in an adjoining patient treatment room. Paper thin walls. I was there to see her for a skin rash (not for LD). I also saw them walk past as they exited and noticed the holstered pistols.
Sorry - this REALLY did happen (late April of this year). She saw me next and probably now wishes she hadn't told me who they were and their agencies but she was crying and said "I need to tell someone and you're a good friend as well as a patient. You will understand."
She was beyond incredulous and still shaking (trauma? fear?). She knew nothing of the background of the Lyme disease controversy.
When she took over for another doctor who quit she inherited his hundreds of LD patients and was told "you must keep the treating of LD a secret". She just knew treating LD paid VERY well. She needed the money being a late starter in medicine.
The following week I delivered a copy of several books for her to her office including the book "Lab 257". She wrote me a brief tweet" "thank you - now I understand" from someone else's Twitter account.
I've not communicated with her since that day in April except for the short "tweet" she(?) sent me.
She then went home and her office cancelled her appointments for the rest of the day then for the rest of the week.
She DID drop all of her 400+ LD patients by form letter the same day (including me).
Three suicides have occurred among the 400+.
Because of suddenly losing their LLMD? I have no idea. I just know of the suicides.
She was then ordered by her hospital (owner of the practice) not to accept phone calls, office visits, letters - anything from the patients she dropped or from potential new LD patients.
Another LLMD doctor referred patients he suddenly dropped to her telling everyone "I retired without notice - I was burnt out and just snapped". Retired yhat same exact day after 38 years? A coincidence? I knew his office manager and called her so they would refer no other LD patients to her.
The receptionist of the younger LLMD told me she was ordered to refuse all requests and allow no one to speak with this particular doctor regarding Lyme be they a recently dropped patient or --
be they someone seeking to be added as an LD patient. This previously eleven doctor practice suddenly became just three doctors as eight quit, retired, moved etc. that same day (even though none of the eight had ever treated an LD patient).
Most near retirement thus most did not need the money. Most could afford to retire - even with no notice.
I still speak with her nurse practitioner and last week she told me "the doctor is now under psychiatric care but is still seeing non-LD patients".
That day the LLMD told me while still crying "I can't quit". I'm only 47 and still have large loans to repay even at my age".
She "inherited" the "regular (non LD) patients of the eight who quit. Thus she still has more patients than she can handle (her appointment nurse told me).
They all know me well in the office and I've stopped in several times but cannot see her. I've not tried to see her. I was told she now remains in her office and patients come to her office. No more moving from room to room seeing one patient after another.
I respect her enough I have not tried to communicate with her in any way at her home, by letter, e-mail - anything.
I did recently speak with one of the eight doctors who quit "bumping into him" at a Walmart.
He did respond to my question "why did you quit?". I already knew the reason but he perhaps knows my in-depth background in LD and that I saw and heard what happened to Dr. --- " so he did respond to me. I asked him only one question. WHY?
"I'm scared for my family; I'm scared for me. I quit for good as a doctor but I was just hired as a pharmaceutical salesman supervisor so I'm OK".
BTW - I am just the "messenger" in all of this - I confirm all of this happened exactly as written.
As they say, "please don't shoot the messenger!".
Two years ago she prescribed Levaquin for me as one of few ABXs I had never taken. It cleared up my chronic bronchitis (CB). No other ABX affected CB.
By my next bout with CB she was now VERY reluctant to prescribe Levaquin telling me of recent FDA(?) notice of problems with torn tendons and Levaquin.
I then found a new "official" government caution notice on-line (about Levaquin) using Google. She prescribed it anyway as only Levaquin worked for me for CB.
No matter how careful I am to not pick up germs bacteria, viruses that could lead to a respiratory illness, I STILL pick up CB a few times a year. Without Levaquin it stays with me forever (?) never going away.
A prior LLMD who is now in jail being too "aggressive" in filing insurance claims (she has $22 million SOMEWHERE the FBI hopes to eventually locate although she is now 85 years old).
Her much younger husband is also in jail (accounting fraud having completed and signed the insurance claims in question). Mostly for expensive office visits on days they proved she was out of town.
At age 85 if she does not outlive her jail term I'm sure he will "arrange" to "find" the fortune wherever it is or from whoever is holding it.
There is a 10% reward for finding the $22 million. I am waiting for she or her husband to leave prison (for an obvious reason).
"Episode" is on Quackwatch.com - under the name (ex)Dr. Ryser (I was a witness in the trial). I think it was Biaxin given to me prescribed by Dr. Ryser via IV (that she prescribed for CB). It also worked but the brand new LLMD will not do the same treatment.
Odd "treatment" as the Biaxin (?) had to be injected in both hips at the same time (two nurses - two needles). Different drugs perhaps?
I had to have weekly injections for three months but it finally cured the CB (for two years).
The later LLMD also prescribed Levaquin and it worked taking all ten tablets (one per day although it didn't go away until two days after I took the last Levaquin pill).
The more recent LLMD said "I've read cautions about Levaquin".
She tried many ABXs on me but nothing stopped the CB - except Levaquin.
My new (current) LLMD (who is the very last LLMD IN HIDING in my large city!) would not prescribe Levaquin when I asked for it two weeks ago. I remain sick with CB.
He only added me as a new patient by "serendipity".
I know all Lyme treatments so I'm not in his records as a Lyme patient -still after the last two LLMDs "stopped" LD practice the same day - (the other LLMD "retired" the same day as the encounter my ex-LLMD experienced so I assume he also received a "visit" -- a guess on my part).
My current LLMD is now beyond paranoid and told me "I have personally spoken to each of my patients asking (pleading?) they NEVER mention my name to anyone". He added I am taking on no new patients EVER".
He did add me having contributed to a book I wrote and because I provided him information he said he found useful in treating LD patients.
He knew my name when I called in and it was pure luck the receptionist I spoke with (telling me "Dr. -- is not taking on new patients and will instead just treat those he has now until he retires. sorry, no new patients - ever"
She repeated my full name and Dr. --- happened to hear her and immediately came on the line to speak with me. He did add me as a patient being VERY interested in learning exactly what happened to the other LLMD who was ordered to drop all of her LD patients.
He said he had spoken with her briefly and she had mentioned (my full name) saying "he heard it all". I am fairly well known in my city regarding LD. Thank heavens his receptionist spoke my name and the doctor was standing there and heard my name spoken!
BUT he is now also VERY reluctant to prescribe Levaquin and for the same reasons ("significant" recent history of people tearing tendons while taking Levaquin).
What is "significant"? I wish I knew. One in a thousand or 40%? I'll ask when I see him again. It has me spooked as well but Levaquin is the ONLY oral ABX that stops CB in my body.
Otherwise, I have the never ending sore throat, fever, low pH and tired and weak feeling of CB.
He prescribed another ABX (Zithromax) which I already have plenty of and it does nothing for CB at least for me. I also tried Cipro, amoxicillin, doxycycline and several other ABXs I have. Nothing did a thing for CB.
I have (legal) access to most ABXs. I took the Zithromax as he requested. It did nothing to the CB (as I expected).
Part of the problem I'm sure is I've taken ABXs for so many years for Lyme I've become resistant to some of them.
But what finally "broke the back" of LD for me allowing other drugs, diet, etc. to greatly lessen my Lyme "suffering" was six months of a PICC line feeding a rotating regimen of ABXs to a valve(?) near my heart.
I had to change to a different ABX every three weeks as the doctor (the same one who suddenly "retired") told me "your body becomes resistant to most ABXs after 3 to 6 weeks".
Zithromax, Ceftin, doxycycline, Rocephin and one other (forgot the name - sorry) were all in the rotation via the PICC line.
I injected the ABXs at home myself once a day. Anyway, I'm sure I'm resistant to most ABXs now which is not good but better than the condition I was in before the PICC line "major league" bombardment of ABXs into my body.
I have CB yet again! I know only Levaquin will stop the CB.
I am not a doctor thus I don't recommend anything. I am just repeating what I put in my body that does stop CB.
I am extra careful while taking Levaquin - especially no exercise or any movement that stresses any tendon in the slightest.
I've never experienced torn tissue (tendon or anything else) while taking Levaquin but I do nothing more than sit and type on my computer while on Levaquin.
I hope this info helps!
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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I did Levaquin for 7 weeks with little problem. I listened to the wise people of this group and loaded up on Magnesium and did the epsom salt baths religiously. When I would forget the Mag. I would start to feel the twinges.
The Levaquin helped me turn a corner after months of no progress. At about 7 weeks the twinges got scary and I stopped myself. Shortly after that I went to a ND and he muscle tested my zillions of supplements and rx. He found Levaquin to be a positive test which tells us I need it. I will try it again soon I think.
Another alternative MD. I like recently said he rarely prescribes Levaquin due to the high risk of spontaneous tendon rupture. Be super careful!
Posts: 143 | From Pittsburgh | Registered: Jan 2014
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Judie
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Member # 38323
posted
Still, no big issues with levaquin. Side effects are less each day. I'm just tired. I think it's really kicking out some big bugs.
Mvdr - That's so great to hear that levaquin was a turning point! Very encouraging. I've been in treatment for quite awhile and not progressing as quickly as me or my doctor would like.
w0tm - Sorry to hear that you're having trouble getting levaquin. I know some people get meds from online pharmacies, but I haven't done it myself.
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