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2125872 tn?1335238667
lyme diagnosis but can't get antibiotics wtf
so i have been dealing health issues for the beeter part of 4yrs now. severe fatigue heart palps tachycardia but all ekgs come back fine, as of the last 4-6 months been forgetting where i am or why i went to wherever i might be tons of muscle ticks(yes pun intended), severely stiff neck that comes and goes, muscle fatigue/weakness, bad headaches, dizzyness. i'm sure there is more but i don't have all the symptoms all the time so.. anyway i finally found a dr (a naturopath) who mentioned lyme about 1 year ago so i slowly started getting tests done as i have no medical and must pay out of pocket. he convinced me to get the igennix lyme test got the results on mon the 12th of nov. he says i have lyme though doesnt meet the cdc criteria. now i find out he doesnt like to prescribe antibiotics and wants me to do soome 2 month detox program, get checked for heavy metal toxins and treat that if needed, also remove/replace any metal fillings then and only then would begin to actually kill of the da&n spirochetes. wtf! i have lost my job my house missed out on the first year of my daughters life and now can't get antibiotics? here are the results of the igenex test:

IGM                                    IGG
18kda = ++++                     18kda = -
23-25kda = IND                    23-25kda = -
28kda = -                            28kda = -
30kda = +                           30kda = -
31kda = +                           31kda = IND
34kda = ++                         34kda = -
39kda = IND                        39kda = IND
41kda = ++                         41kda = ++
45kda = -                            45kda = -
58kda = +++                       58kda = ++
66kda = -                            66kda = -
83-93kda = ++                    83-93kda = -
any and thoughts much appreciated thanx
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It is counter productive for a doctor to skimp on abx for a particular patient, such as prescribing 10 days instead of 14 days. That just helps create more super bugs in the cases that needed 14.

I had a week of a strong penicillin when I first got sick with Lyme and coinfections. I had no idea what I had, but felt better within a day of starting the meds.  My symptoms went away, so I didn't think anything of it.  Assuming the easy-to-kill bacteria were wiped out in that week, I think my infection now consists of the harder to kill bugs.

What I find laughable is the argument against treating Lyme patients with long term abx because long term abx are "dangerous."  I never hear that word associated with a one year abx treatment for Q Fever or TB or MRSA or even acne!  Why can't they just inform the patient of the risks and let the patient decide?  I imagine most patients would choose the "dangerous" antibiotics over the misery of Lyme Disease.

Okay..I am done with my own rant, now.
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Colloidal silver (CS) is something I'd approach with great caution.  I just searched online for

                     colloidal silver lyme

and got quite a few hits, a number of them positive.  I've also seen photos online of people whose skin turned blue/grey from taking.

I haven't done enough to understand by what mechanism CS is supposed to act against Lyme, and I would be very sure to read ALL the literature out there about both about effectivenes AND safety/side effects, pro and con.  

I don't think, based on what I've read, that I would try it, since I'm pretty much an antibiotics kind of person.
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2125872 tn?1335238667
i completely agree i would much rather get antibiotics from a doc but it seems that isnt going to happen anytime soon. and i guess im being a little impatient but... and the coloidal silver thing i want to say my naturopath had even mentioned it dunno. thank you for all the response btw
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1763947 tn?1334058919
My LLMD did mention turning skin blue in larger amounts then I was using as a cream.
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colloidal silver ills various antibiotics, but specifically for lyme, you'll get better results with herbs.
You cannot take much colloidal silver as silver is toxic in large quantities.
Teasel is the number one herb against European strains of lyme.
You also need artemisia to bust the cysts.
You can take these very long term, for life if necessary.
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2125872 tn?1335238667
random update i guess haha. oddly enough for the last week or so my most diruptive symptom of heart palps and tachycardia has decreased alot yay! but it was replaced with even more severe fatigue and strangely my knees for the last 4 or 5 days will feel a little sore so ill sit down and notice they are bright red and radiating heat but it only does it for a few hrs then goes away odd. have an appt tomorrow with naturo talked to him earlier in the week and explained i couldnt follow his ideal treatment plan he agreed to start killin the bugs but sounds like he wants to use herbs instead of standard antibiotics. still want antibiotics but killin bugs is killin bugs so hopefully somthin will happen soon.
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Anti-Lyme herbs are better than nothing!  Many people have achieved remission or at least become functional again with herbal treatments.
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2125872 tn?1335238667
yeah i agree, kind of funny though my sister just called me and said she has like 2 weeks ish of amox. now i'm not sure if i should take it since im gonna see doc tomorrow...
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No, definitely don't tak abx without a doc guiding you.Amox alone may not be the right thing, and 2 weeks of any antibiotic isn't enough to do anything useful against lyme anyway.
I know it's really frustrating but doing it yourself is too risky.  :(
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2125872 tn?1335238667
ok update time : ) just got home from naturopath he has started me on samento, banderol and a crazy expensive garlic. so 300 dollars later i at least have a first attempt at treating this junk. the plan is to try these for a month and if nothing happens then switching to doxy. so i guess i just wait and see. anyone used or tried any of these?
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When I had to stop prescription meds to let my kidneys rest, I was put on Samento and Banderol. They are the two most common anti-Lyme herbals that I have heard of.

I did end up using a different brand of Cat's Claw than Samento. That was the first time I had a herx on herbals so I know it worked.  (I had read an article explaining that while TOA free Cat's Claw was more effective, the same benefit could be seen with a higher dose of the regular Cat's Claw. I just followed the directions on the bottle.)

Sounds like you're off to a good start.  
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2125872 tn?1335238667
random update i gues, i started the samento/banderol stuff 4 days ago and yesterday and today my heart palps, tachy and general chest pain seems a little better. the frequency, severity and duration has decreased at least. also fatigue is a little better not great but enough that i noticed. knees, hands, shoulders and back still hurting and headaches still there. not sure if i am gonna say the herbs are helping or if its just a coincedence but... time will tell i spose. going to cardiologist tomorrow to do another holter monitor i'm sure nothin will show up but worth a shot i guess. no sign of herxing, which seems to be making my naturopath concerned(?). he still seems unsure about the lyme diagnosis. i can definately say his seeming lack of confidence doesnt help at all and has me questioning if it really is lyme. annoying.... anyway hope everyone had a great thanksgiving g'night
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Not everybody has herxes.  And herbs don't usually pack as much of a punch as abx, so you're less like to have noticeable herxes.  (Except A-Bart...I've heard of significant herxes on that one.)

With four years of illness, you could be looking at a year or more of treatment, so think of it as a marathon, not a sprint.  Progress can be frustratingly slow sometimes.  Sometimes it's even two steps forward, one step back.  Just look at the overall picture to see if you're improving.

I even had brand new symptoms show up months after I started treatment. That was really annoying.  I was loaded up with antibiotics, how could it have moved to a new place??  Such is the nature of Lyme. You have to keep up the relentless pressure on it to beat it into submission, or like a chained attack dog, it will lurch forward if you give it slack.

It sounds like your NP is learning by doing.  If you are confident that it is Lyme, he'll feel better.  I know, it should be the other way around, but it is what it is.

We recently saw someone post here about Brucellosis. While usually associated with cattle/dairy and dogs, it is also tick borne.  It has almost the same presentation as Lyme Disease, and can be as difficult to treat.  If you have doubts about Lyme, you could always ask to be tested for Brucella.  
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2125872 tn?1335238667
question aboot herxing. most of what i could find inline said symptoms of a herx was stuff like fever and tiredness and basically flu like stuff. i seem to be just experiencing the i guess lyme symptoms worse than before i started the treatment plan. so my question is can a herx reaction just exacerbate whichever symptoms that i have already been experiencing?
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My herxes have been mostly an intensification of certain Lyme symptoms along with fatigue, brain fog, and mild headaches. Sometimes I just feel really crummy on a new drug or an increased dose. I haven't had any fevers.

I have had extensive and severe rib pain thanks to Lyme, and when I had my first Bicillin shot, I had horrible rib pain for the next couple days. I didn't have big herxes with oral abx until Biaxin and then also with Clindamycin. Both had a narcolepsy like effect on me about 18 hours after the first dose. I felt like I'd been run over by a truck for a day or so.

My herxing in the last month on Malarone for Babesia has been the worst of all....significant air hunger, breathlessness, fatigue, and malaise.
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2125872 tn?1335238667
ok yeah that helps, i have been on the herb stuff for like 9 days now and the first coupple of days i was feeling a little better then i started upping the dose per my dr's orders and now it's weird my fatigue is better but everything hurts like a crappy cold or flu where everyhting aches and is stiff and horrible headache again and just gnerally out of it but fri and sat i felt ok enough to get out of the house so i went to cabelas and just walked around for a couple hrs then hung out with my finace and daughter last night and today i feel like i got run over by a truck. hopefuy it is herx i guess since that means bugs are dying, right?
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1763947 tn?1334058919
Yes, herxing is from a die off which is what you want.

So I was told by lyme friends when i first herxed that you need to feel worse to feel better. A worsening of symptoms. My herxing has gotten easier with time. I had some new things happen to me with a herx.

My LLMD took a blood test to see how my body naturally detoxifies. I came out, that I don't detoxify well so I take meds for it, recommended by Burascano. You could also take activated charcoal which absorbs the toxins from a die off.
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2125872 tn?1335238667
ok this is awful! i have been to the er 3 times i think in two weeks for this chest pain tachycardia dizzyness blurry vision shortness of breath and horrible headaches. i just got the prelim results of my 24 holter all it showed was sinus tachy possibly inappropriate sinus tach. does any of this seem to match up with anyone elses lyme experience? btw those arent the only symptoms i have just the ones that freak me out i guess.
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1763947 tn?1334058919
Since I am not medically trained I can only tell you my own experience and I have had all those symptoms. I had to go on medications for the tachy, and the blurry vision has gotten better with time but I still have it.

Did they give you any meds or tell you anything to do for it?
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2125872 tn?1335238667
nope they didnt say much just to come back if it happens again and i just got a call from my gp and i guess im getting a refferal to cardiologist.
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My daughter at 13 started having tachycardia, chest pain, air hunger, dizziness and headaches. They gave her an ECG (abnormal) and put her on a halter monitor.  Her button pressing to mark her pain correlated with tachycardia. Sent her for an echocardiogram and a cardiac stress test which both came back normal....very frustrating. She was never given a diagnosis.....well we know what it is now.
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We get lots of rib pain with our symptoms too. All of us!
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2125872 tn?1335238667
well thank you for the responses. as far as rib pain not surre if that is my issue as most of my pain is the center of my chest and upper abdomen. very frustrating, sometimes gi cocktail helps sometimes it doesnt nitro has helped before but not always either. i guess my biggest concern is wether it is heart pain like angina or somethin else, and so far i can't get any dr's to consider checking my heart beyond an ekg. on the one hand it makes sense as far as my age, but i do smoke and used to have a horrible diet and heavy drinker and now havent been able to exercise for the last 4 or 5 months. but the lack of exercise has been due mainy to the tachy and not chest pain anyhow guess i'm kind of venting at this point. lol
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2125872 tn?1335238667
so i guess i'll mention the other stuff. i have been on the samento/banderol stuff for 14 days now and aside from the chest pain and all the stuff i mentioned previously. my muscle twitches and ticks have been almost nonexistent, the joint pain comes and goes instead of all the time, my focus is alot better and i'm not mispelling words as bad or using words incorrectly etc... my fatigue is better if nofor the chest issues i'd probably feel pretty good. so, dunno if it's coincedence or if the herbs are helping.
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Sounds like progress.

Also be aware that Lyme bacteria like to live in places where the immune system can't see them and therefore can't destroy them.

One of those hidden places is cartilage, which has relatively low blood flow compared to say muscle.  Your chest discomfort may be because of the cartilage that loops from the ends of your ribs to the breastbone (sternum) being irritated by Lyme bacteria -- and your knees too, but I'm NOT medically trained, so this is just a thought for your consideration.

Are you taking magnesium supplements?  Lyme bacteria are, so I read, greedy users of magnesium (Mg) in their reproductive process, and lack of Mg can lead to muscle twitches, cramps and aches, as well as other misc. misery.  Might have mentioned this before, but taking Mg supplements (any variety ending in "-ate", like Mg citrate, aspartate, malate, etc) are said to be the most absorbable.  It's also very soothing generally.  I still take it, since the American diet is said to be low in it.  

Be sure if you take supps that you always tell your doc (sometimes they forget to ask) what it is you are taking and how much each day or how often if not daily.  Supps can change your symptom array, and that can throw off the doc's diagnosis and treatment plans.

Having Lyme ain't for wimps, that's for certain.
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I have had chest pain, too, mostly in the area of my sternum.  I have also had terrible abdominal pain, which stumped multiple mainstream docs. I think I also had Lyme in and around where my diaphragm connects to my ribs. And my stomach hurt for a year. All known Lyme symptoms.  Sorry you're herxing so much.  If your shortness of breath is accompanied by sweats, you might also have Babesia.  After nearly two years of chronic shortness of breath and air hunger, we finally figured out that I have Babesia.  I tested negative three times, so testing was not helpful for me.

Robyn - Very interesting to hear you all have rib pain!  I have had very bad and persistent rib pain. After over a year, I am now down to chronically sore ribs.  It is not a very common symptom here in CA or even in the US from what I have read from others.  I wonder if it is more common in Aussie Lyme?  My collection of symptoms looks more like Borrelia Garinii, a European species, which I read (on Dr. Mayne's web site) has been identified in Oz.

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2125872 tn?1335238667
thanx for the responses, yes i have been on magnesium for about 8 to 10 months now. i just got home from appt with naturopath and i am starting doxy tonight or tomorrow depending on when the paharmacy gets it filled. so i guess we shall see what happens on those.
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I don't recall if anyone above has already mentioned the need for cyst-busting meds to crack the door open so doxy can get to the Lyme bugs to kill them.  Doxy seems to work in the earliest stages of Lyme before the bacteria are able to hide themselves in a cyst form that doxy can't break through.  Did your naturopath discuss that aspect?
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2125872 tn?1335238667
i believe that was part of the idea behind the samento/banderol combo which i did for like two weeks, also i have been looking into something called serrapeptase.
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Ah, got it.  My Lyme doc is an all-antibiotics-all-the-way kind of guy, so I don't know much about the herbal approaches.  

If you're head is clear enough to do reading on the topic, roaming around the web (with a skeptical eye) can provide a lot of information on these things, always with the caution that some percentage of it is wrong, misleading and/or dangerous. ... then again, docs can be that way too sometimes.  heh.

Hope you're feeling better soon --
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2125872 tn?1335238667
yeah i think since my doc is a naturopath and not specifically an llmd he tries to do everything naturally as much as possible. out of curiosity what antibiotics are capable of busting up the cyst forms? i havent stumbled onto any mention of that before. and yes having so much "information" available i.e. internet can be good and bad regarding any health concern too easy to get misinformation.
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1763947 tn?1334058919
I know that Flagyl and Topomax are cyst busters.
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My doc used Flagyl.  

But in the larger picture, Lyme treatment is not a do-it-yourself project.  It's a complex disease with a number of other diseases (co-infections) that often come along with Lyme.  Each of these infections, Lyme and the co-infections, need different meds and combinations of meds.

It's nice that the naturopath is trying to help you, and I know it's expensive to see an LLMD, but Lyme isn't a case of the flu that will eventually go away by action of your immune system.  Lyme can have real, serious, long term effects, and the longer it goes untreated, the harder it is to get rid of, and it can have long-lasting effects once established.  
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2125872 tn?1335238667
yeah i wish i could figure out a way to get the money to see a llmd but for now i can't do it. however i know my naturopath consults with a couple of local llmd's in my area regarding my case so... hopefully somethin will start to help.
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I hear you -- hope it goes well -- keep us posted!

(It was mentioned in the messages above, but Burrascano's treatment guidelines are worth reading on the ILADS website, for both you and your naturopath.  There is no hard-and-fast, one-size-fits-all treatment approach, since much depends on what co-infections you have and how long you've been infected.  Combine that with the individual variations in immune system function and the different strains of Lyme, and the number of variables to account for gets big pretty fast.  That's why the different treatment approaches and so-called protocols vary -- partly it's the still-developing understanding of Lyme and partly it's the interaction of various infections, strains of those infections, and your own immune system.)

Wishing you well ---
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1763947 tn?1334058919
Some co-infections like Bartonella, give many people, like myself, neurological problems, Babesia, which is a cousin of malaria, gives you other symptoms. For me I had air hunger and the sweats with a dry cough.

If you read Burascano's guidelines like Jackie suggested you may be able to pick out a co-infection that you have then you might start with herbal treatments.

Burascano recently spoke at the 2012 ILADS conference and says that almost everyone with Lyme has a co-infection.

Good luck!
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2125872 tn?1335238667
been a while since i posted anything. i have been with an llmd since the middle of jan was put on zithro and for about a month and a half was doing pretty good. but hit a wall. as of late my llmd thinks my major problem is bartonella. so about two weeks ago dr added rifampin to the mix. holy crap awful herxing. has anyone here successfully treated bart? i am supposed to take two rifampin a day but can only tolerate one pill every other day. its definately frustrating since i was feeling at least a little better and now that we added the rifampin im back to feeling horrible most days. anyway enough whining hope everyone else is making headway in their treatment.
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Sounds like you're making progress too, but progress can be ever so hard ... as you know.

Has the doc okayed taking rifampin every other day in half a dose?  I wouldn't do it without the doc's okay as to timing and dose.  Otherwise you could be creating drug-resistant bacteria.

Hang in there!
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2125872 tn?1335238667
@jackie, yeah my dr said for now take one pill every other day is fine. when i initially told her about the reaction i was getting she thought it was just a reaction to the med. but since the majority of my symptoms have been cardiac related and chest pains and dizzyness i told her i believed it was herx and so she agreed to continue but to monitor reactions very closely.
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I'm glad your doc is in the loop!  Sometimes people start freelancing in how they reduce or change their meds, and that way lies (more) misery.  Hang in there -- it's definitely a battle worth fighting against the bugs.

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1763947 tn?1334058919
My friend successfully is cured from Bart's.  I am cured from Babesia (I hope) but I would give anything to be done with Bart's since it affects me neurologically.

I take rifampin, and my first round was terrible herxing. I started at 150 MG and I am up to 300 MG twice a day.

Glad you found a good LLMD.
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2125872 tn?1335238667
Well thank you for the responses. And its nice to hear when anyone successfully treats any of these darn things. If I'm being completely honest the last few days I have been being a wuss with the rifampin because the reaction is so bad but after some self induced motivation have my mind back on track to keep going with it. Haha. Also wanted to mention ashwagandha it has helped tons with my energy levels.
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I had two separate trials of Rifampin and each one was horrific! I refused to take any more. (That's just me----some people can stand it.)

About colloidal silver:

This is from the National Center for Complementary and Alternative Medicine (NCCAM) about the use of colloidal silver:

http://nccam.nih.gov/health/silver

Another article by Tom Grier ("Tom Grier, M.S. Mr. Grier, a microbiologist who is a Lyme patient, writes about the complexities of Lyme disease in a simple, down-to-earth manner easily understood by all.")

http://www.lymeneteurope.org/info/real-concerns-about-colloidal-silver

The concern about argyria (where the skin turns blue) is real but to be truthful, I've not heard of that happening to the people who have used it. But it CAN happen and can't be reversed.

I know that people use it and claim it's beneficial. I won't use it though and not because of a fear of turning blue. :)
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I am so glad you're seeing a LLMD! That's great news!  I started out with azithromycin, too, but wasn't on it for very long. I think it's a good starter drug to avoid heavy herxing, but it's not a cure.  As soon as you plateau for a while on any drug, then it's time to switch up to a different one.  

Good call by your doc on the Bart. I tested positive for it and started on Rifampin a week after the Zith. I didn't have much herxing on it although my anxiety began to get better.  I really improved when I switched to Levaquin. It finished off the Bart for me. I think my case of Bart wasn't that bad.  

My Babesia, however, has been rather nasty.  I have definitely experienced chest wall pain as part of my herxing.  Right this moment, I feel uncomfortable "pressure" on my sternum. I've had some sharp pain, too.  When I had a nasty symptom flare of Babesia, my tachycardia bounced back up higher than it had in at least 8-10 months or so.  I looked it up and Babesia can indeed cause heart irregularities.  I was down to one of my beta blockers every day and a half, but now I am back up to one a day.  I also notice my heart rate is irregular when I don't feel good. It isn't arrythmia, it's just inconsistent beating, such as a few strong beats, followed by a 'normal' beat or two, followed by a few weak ones, and then big strong ones again.  The vertical bar on my finger pulse oximeter shows how variable it can be.

Are you taking a beta blocker. It definitely helps me. That and magnesium help soothe my irritated heart.
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You say above:  "I started out with azithromycin, too, but wasn't on it for very long. I think it's a good starter drug to avoid heavy herxing, but it's not a cure."

I had Lyme and babesia, with the following treatment approach (now 5 years ago):

-- Zithromax [azithromycin] and Mepron [atovaquone] -- 5 months

-- Biaxin [clarithromycin] and Omnicef [cefdinir] -- 5 months
     which was switched to:
-- Zithromax [azithromycin] and Flagyl [metronidazole] -- 6 months

So ... Zith worked for me.
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Mepron is taken along with Zithromax, and I believe some other anti-Lyme antibiotics cannot not be taken at the same time as Zith.  

Zithromax does work to some degree against Lyme, but from what I understand, it doesn't do a very good job of penetrating the nervous system.

Zith in fairly high doses does help some people.  The feedback from people with lots of neuro symptoms seems to be that it doesn't do much for them.
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2125872 tn?1335238667
so im not sure if i should ask here or start new thread but ill try this first. who here had bartonella and successfully treated it? what worked? i saw my llmd a week ago and out of curiousity asked about what i thought were stretch marks turns out dr is confident they are bart rashes wich since two weeks ago i did notice new ones and that also coincides with me moving up to the full dose of rifampin. the crappy thing is the majority of these "stretch" marks i first noticed when i was 16 but just thought it was from working out, sports etc... anyway im kind of bitching at this point. my tachy isues havent ben happening much only once or twice a week and not at all as bad as before but brain fog is horrible and chest pain, well pain in general but...ughh yeah so any successful stories would help im just feeling really beat up right now. hope all are doing well thanx
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I think that's a question worthy of a new thread -- "Successful bartonella treatments to recommend?" -- or something along that line.

It does take a while sometimes for infections to be identified, so as much of a drag as it is to be diagnosed with something you would just as soon not have, it's a good step to at last know it -- because the next step is getting rid of it.  Points to your doc for paying attention and responding when you mentioned the marks.

Others here who have had bart can comment more specifically, but I send you good wishes overall -- you're making progress.

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Hi All,
It is a crying shame that we are all dealing with Lymes and it is a constant scramble to figure out how, what, where and when to deal best with this horrible disease.
The worst part is that if one doesn't have health insurance or money to help themselves- it can be debilitating!
I have a book that may be helpful... It's called Lyme Disease in Australia.
By Nicola McFadzean, N.D
It is great how it really makes sense of it all and ways to treat it through medications or as naturally as possible.
I wish you all health and being able to think and function enough to figure out the best help.
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There are some charities that can help fund Lyme diagnosis and treatment for those financially ailing.

One is called:

                                 Lyme-TAP

and the other is:

                                 LymeLight Foundation.  

They have somewhat different approaches, from what I have read, so check out both websites.  

I have not dealt with either of them, so don't have any impressions, but it's a place to start.  
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