Azithromycin Therapy Question

[Antoine3323]

Hi there,

WARNING: Long post.

New guy here looking for some insight. I was recently clinically diagnosed with Lyme and other potential coinfections by two separate LLMDs. Unfortunately, still waiting on the Igenex tests results to come back, which hopefully, will confirm this to shed some more light on my case.

The first LLMD I saw put me on 100mg doxycycline twice daily along with other herbal supplements to combat the infections just about two weeks ago. Things seemed to be going well. I began having typical herx reactions with exacerbation of many of my most recent symptoms.

However, on the recommendation of a friend, I was told to go see a different LLMD. This physician strongly believes I have Lyme, Bartonella, and Babesia. To more aggressively tackle the Lyme and Bartonella, I was prescribed 500mg azithromycin daily to go along with my current regimen. I began taking it 3 days ago, and it appears as though I am experiencing a number of adverse side effects of the medication.

If someone here who has used azithromycin to battle Lyme and Bart could help comfort me in my decision to continue with the azithromycin therapy that would be great. Below are my concerns:

I am still confused as to whether or not I am experiencing adverse drug effects or a 'herx.' It is difficult to know because this disease has literally affected every tissue in my body. However, there are a couple things that make me suspicious of a drug allergy/adverse effect.

1. I have an immediate reaction to the drug. As soon as it touches my tongue, I begin to experience effects.

2. My reaction to azithromycin is completely different than my reaction to doxycycline. With doxycycline, the herx reaction appears to fall more in line with my recent symptomology; body temperature fluctuations, bulging veins, brain fog, weakness, and seizure-like activity to name a few. My reaction to azithromycin exhibits hardly any of these same characteristics.

Below is a chronology of signs/symptoms experienced following each dose of azithromycin. I took my third dose last night. Signs/symptoms seem to wax and wane throughout the day, but are most intense following a dose. I will say that I have experienced some of these symptoms over the past couple of months. However, some are completely new, or are presenting with greater intensity. I should also note that those symptoms that appeared first have lessened with each consecutive dose, while new symptoms seem to present with greater intensity. I have also listed below the published adverse side effects of the medication for comparison.

1st Dose:

Fast Responses:

    Tingling on tongue and lips
    Dry, cracked lips
    Conjuctivitis
    Nausea
    Dyspepsia
    Flatulence
    Dizziness
    Pruritis
    Mild throat angioedema

Delayed Responses:

    Rashes on back and neck
    Mild malaise
    Mild anxiety/agitation

2nd Dose:

Fast Responses:

    Decreased dry, cracked lips
    Decreased conjuctivitis
    Increased nausea
    Increased dyspepsia
    Flatulence
    Decreased dizziness
    Decreased pruritis
    Pharyngitis
    Taste perversion

Delayed Responses:

    Mild rashes on arms
    Intense malaise
    Mild fatigue/weakness
    Full body myalgias/arthalgias
    Intense headaches
    Increased anxiety/agitation
    Mild hearing disturbances/tinnitus
    Respiratory weakness
    Mild left/right upper quadrant pain and tenderness (Dull/Aching/Burning) (Gastritis/Cholecystitis?)
    Mild right upper quadrant rash
    Spotty urticaria appearing on skin over liver surface area
    Chest/rib pain
    Increased sensitivity to lorazepam

3rd Dose:

Fast Responses:

    Decreased dry, cracked lips
    Decreased conjuctivitis
    Nausea
    Dyspepsia
    Flatulence
    Decreased dizziness
    Decreased pruritis
    Decreased pharyngitis
    Increased taste perversion
    Feeling of skin crawling

Delayed Responses:

    Decreased malaise
    Increased fatigue/weakness
    Mild myalgias/arthalgias
    Mild headaches
    Increased anxiety/agitation
    Increased hearing disturbances/tinnitus
    Intense respiratory weakness (Feels like elephant is on chest)
    Increased left/right upper quadrant pain and tenderness (Dull/Aching/Burning) (Gastritis/Cholecystitis?)
    Increased right upper quadrant rash with obvious internal inflammation
    Increased chest/rib pain
    Increased sensitivity to lorazepam

-------------------------------------------------------------------------------------

Azithromycin Post-Marketing Experience:

Adverse events reported with azithromycin during the post-marketing period in adult and/or pediatric patients for which a causal relationship may not be established include:

Allergic: Arthralgia, edema, urticaria, difficulty breathing, and angioedema.

Cardiovascular: Arrhythmias including ventricular tachycardia and hypotension. There have been rare reports of QT prolongation and torsades de pointes.

Gastrointestinal: Anorexia, constipation, dyspepsia, flatulence, vomiting/diarrhea rarely resulting in dehydration, pseudomembranous colitis, pancreatitis, oral candidiasis, pyloric stenosis, and rare reports of tongue discoloration.

General: Asthenia, paresthesia, fatigue, malaise and anaphylaxis (rarely fatal).

Genitourinary: Interstitial nephritis and acute renal failure and vaginitis.

Hematopoietic: Thrombocytopenia.

Liver/Biliary: Abnormal liver function, hepatitis, cholestatic jaundice, hepatic necrosis, and hepatic failure have been reported, some of which have resulted in death.

Nervous System: Convulsions, dizziness/vertigo, headache, somnolence, hyperactivity, nervousness, agitation and syncope.

Psychiatric: Aggressive reaction and anxiety.

Skin/Appendages: Pruritus, rarely serious skin reactions including erythema multiforme, Stevens Johnson Syndrome and toxic epidermal necrolysis.

Special Senses: Hearing disturbances including hearing loss, deafness and/or tinnitus and reports of taste/smell perversion and/or loss.

[mojogal]

That is what I take but I add a two week rotation of Flagyl.

[youvegottobekidding]

The therapy tat my doc likes, and says is being used a lot, is a therapy that targets lyme, babesia and bartonella.
It's clindamysin, Rifampicin, and doxycycline or minocycline.

It seems effective against one or all of those infections, so as I understand it, it's a good choice whether or not you really do have the coinfections.

[Antoine3323]

My doc thinks I've got both bartonella and babesia. I definitely think I have bart. Not so sure about babs. I guess we will see what happens when I start to treat for it

[youvegottobekidding]

Has your doc told you which co infections he thinks you have?

[youvegottobekidding]

You're right that some co infection are even harder to test for than lyme, and most good lyme docs do treat for those based on symptoms if they feel the clinical case is clear enough.
There are quite a few strains of bartonella for which there literally is no lab test.
They also do seem to be terribly hard to get rid of.

The good docs in America seem to be figuring out good antibiotic combos which treat for several infections at once. My doc has recently learned some of these and is really excited about the good results he's been seeing. So with any luck your doc will be up to date on those protocols.

[mojogal]

Many LLMD will treat for co-infections based on symptoms alone because it often takes many tries even with igeneX to get a positive result for co-infections.

I guess I was lucky to get a positive the first time with Bartonella however my Babesia took many more tries and I started treating on symptoms alone.

[JackieCalifornia]

Others here are more conversant with these issues, but I understand that tests may well come back negative a long time after infection, because the immune system has largely stopped reacting.  Sometimes an antibiotic challenge is done, giving a short course of abx to wake up your immune reactions.  

That your doc uses IGeneX for testing is a good sign, but keep up with your own reading.  Sometimes even the best-intentioned docs go down stray paths.

If you are going to use various 'protocols', clear them with your doc first.  Herbs, supplements etc. may support a pharmaceutical approach, but they may also interfere with it.  Herbs = chemicals just as drugs = chemicals.

[Antoine3323]

I was tested for coinfections, as well. I got the new western regional panel done by iGenex. Everything came back negative for those, but I believe my physician is still going to try to treat for them. From my understanding, they can be even more difficult to detect than Lyme.

I'll definitely look into that James Wilson protocol. I'm willing to try just about anything to help in my recovery. I'm trying all sorts of detox remedies and supplements.

[JackieCalifornia]

Thank you!  You write wonderfully -- focussed and detailed, but very understandable for such technical/medical stuff.

I could see many of the symptoms in myself from back when I was so ill.

[youvegottobekidding]

NB you need to delete the spaces I inserted in the link above.

[youvegottobekidding]

Sorry to hear about the really bad ER episode, but I'm glad it wasn't a heart problem from the azith.

I had extremely bad adrenal insufficiency (to the extent I was investigated for Addisons disease) and I managed to resolve it by following a nutritional protocol in a book by James Wilson.
You just have to take nutritional supplements and give up a few foods (ones which are bad for us anyway).
It got rid of a very long list of symptoms for me (low BP, constantly waking in the night, endlessly urinating, headaches, exhaustion, lack of sex drive).
So, as you can tell, i'd stronly recommend trying this approach.

I summarised the protocol here
http://ihateticks. wordpress. com/2012/10/09/do-you-feel-tired-all-the-time/
But I'd recommend buying the book to get the full details.

Good luck with the new abx.
I havenì't had rocefin but my son had it and it worked extremely well for him.
When on that (especially IV) you have avoid getting too much calcium, do ask your docs for advice about that when the time comes.

[mojogal]

Congrats on getting the confirmation. Now it will be much easier for you. Your LLMD can test for co-infections.

I am on oral abx but was on IV Rocephin for a week in the hospital and I had no problems but I was already 10 months into my treatment.

Others may have more experience with it.

[JackieCalifornia]

Well, if bad news can also be good news, getting those Lyme results counts.

So congratulations!  Others here can speak to IV meds ... I took only oral abx.

Were you tested for any co-infections?

[Antoine3323]

Well, I didn't quite make it to the appointment yesterday. I started having palpitations, chest pain, and episodes of fainting that began the night before and worsened through the morning. Took a trip to the ER instead.

I was worried about the cardiac side effects of azithromycin causing them. Turns out, my fears were unwarranted. My EKG and echocardiogram were fine. The cardiologist pointed out that it seems like experiencing adrenal insufficiency. Oh the joys of Lyme!

On a brighter note, I guess, my IGenex WB results came back CDC positive yesterday, which removes much of the uncertainty many of my normal physicians had about my condition. Hard to believe how many doctors out there that are just so adamantly against a diagnosis of chronic Lyme.

My LLMD is going to switch up my meds for a bit. I'm going to stay on some orals until I can get a port installed, then it's IV Rocephin. How are peoples' experiences with that drug? Can I expect to herx even harder? I can't imagine that would be possible after what I experienced this past weekend. My herx was out of control

[youvegottobekidding]

Good luck tomorrow.
Let's hope she gives you something that works much better for you.

I think there are actually more effective drug combos than azithromycin anyway, my doc put me on it but he told me recently he doesn't use it so much any more.

[Antoine3323]

Thanks for all the advice everyone. After day 5, I just couldn't take it anymore. I felt like I was dying from the inside out, so I discontinued use. I went on a drug vacation yesterday, and simply focused on detox. Unfortunately, the drug hangs around in your system for a while, so I had a lot of residual effects for the next 36 hours. I'm feeling much better today though.

Still, I believe the drug was effective. I just think I may have an allergy to it, which may have exacerbated my herxes.

I was able to get in to see my LLMD tomorrow about it. I think she got tired of me calling nearly every day since our first visit. Hopefully, we can adjust some things for a smoother treatment.

[youvegottobekidding]

I just read over your message again and forgot the basic rule, IF YOU GET ANYTHING ON YOUR SKIN WHEN TAKING AN ANTIBIOTIC YOU HAVE TO STOP TAKING IT IMMEDIATELY.

Sorry I didn't emphasise that enough. in the previous message!!!

If you cannot get the lyme doc at short notice, go to your family doctor or even the pharmacist - they all know who to identify a dangerous skin reaction when they see one.

[youvegottobekidding]

Hi Antoine,

Azith and doxy is the combo I started lyme treatment on.

What you've got sounds like an adverse reaction to me.
You seriously need to talk to your doctor asap.

How often are you having ECG checks and blood tests? On azithro, you need an E CG before you start, another one after 2 weeks and repeats every 3 weeks for at lest teh first 3 months, then monthly thereafter.
You also need a full blood count done once a month.

Azith can cause life threatening heart arrhythmia as a side effect, it can also cause dangerous suppression of white blood cell production by damaging bone marrow. (which happened to me)
These are some of the side effects but it has many others.

If your doc has prescribed this combo he should be all over you with checks to make sure you are safe.

Phoe him and harass him, he cannot just send you off with no backup.
What you're having sounds more like an adverse reaction than a herx to me (as you must already have deduced) but you do need a doctor to figure it out, and tell you what to do.

Good luck, and please report back to let us know how you get on, OK?

[Ricobord]

You keep good records!  

My first thought at reading your list of reactions to Zith is concern about the tingling on your tongue. If this happens as soon as you put the medication on your tongue, then that sounds like an allergy. Herxing doesn't work like that.  You did good in contacting your doctor.  Much of what you describe I would guess is a combination of herxing and side effects.  I am sensitive to meds and I've had side effects on every drug I've taken.  My doc also started me out on Zith and then added in Rifampin for my Bartonella. We didn't figure out that I had Babesia until nearly a year later well after the Bart was gone. I'm still treating Babesia and my leftover Lyme at this point (16 months in).

If I were you, I'd call the doc back and ask specifically about the ttingling on the tongue when you put a pill on it. Allergic reactions can become serious, and if this is an allergic reaction, you need to know right away.  (If you already talked about this specific symptom and they say it's a known side effect, then certainly ignore my suggestion!)

Zith is not the best drug for either Lyme or Bart, which is why it's good to start with it.  You're less likely to have an overwhelming herx as compared to being put straight onto IV Rocephin. I took Rifampin for Bart, which made my stomach hurt, and then I took Avelox briefly until I had a cramp in my Achilles heel, and then I took Levaquin, which worked beautifully. It generated a vibration and cramp in my Achilles heel, too, so that family of drugs is now off the list for me.  Fortunately, the Levaquin seems to have cured the Bart by the time I had to stop.

FYI - I've had worse herxing with Babesia treatment than I did with Lyme treatment. I didn't know this going into it, so it's been a surprise for me. Be sure to ask your doc about it when you start Mepron.  (Mepron needs to be taken with ZIth.)

[mojogal]

I was on doxy 400 MG a day and Zithromax at the same time. The Zithromax was added when I came out positive for Bartonella. I used that along with Rifampin and rotations of Flagyl which is a cyst buster. I had many reactions or herxes but nobody is the same. I also had Babesia which I hope has been cured from Malarone.

I want to warn you that last week I asked to be taken off Zithromax because of the warning that came out that it caused  heart problems in many. Lyme has been in my body over 20 years and has caused a lot of nerve damage and some heart issues. I switched to Biaxin and will soon add ivermectin.

Keep us posted and feel better.

[JackieCalifornia]

Good, glad you're following closely with the docs.  No two people react the same way to Lyme treatment (and/or its co-infections, like babesia and bartonella), so it's often hard to tell what is going on.  

I had very few side effects from treatment, compared to some who come here and have a rough time -- all due to different infections and different immune systems.  That's part of what baffles nonLLMDs:  the variety.

I had Lyme and babesia.  The 'babs' was treated first, with Mepron and .... I forget!  It's been a while.  Then when that was cleared, on to Lyme treatment, and that was a pretty straight shot for me too.  I am a real lightweight when it comes to meds of all kinds, and I was very run down when I started treatment, so it was good that I tolerated the meds well.  Everybody is different, due to immune system differences and to the various combinations of co-infections and the many strains there are of those.

Has your doc prescribed/suggested probiotics?  The abx will kill all the good bacteria in your gut, along with the bad, and that leaves the way open to serious fungal infections.  My doc insisted on S. boulardii probiotics (brand name: Florastor), which are themselves a form of yeast, but supposedly 'good' yeast.  However it gave me problems, which are said to be rare.  The meds were no problem for me; just the yeast.  Go figure.  I know now that I am yeast-sensitive, and so I myself would take non-yeast-based probiotics like acidophilus, but not near medication time.

The data chart you posted up above is a good habit to have imo.  I kept one too, partly because my brain fog was so bad I couldn't remember anything, esp. longitudinally to report back to the doc.  I kept a spreadsheet on my computer, with columns for date, time, meds taken, food, symptoms, changes, and misc.  I would take a copy to my doc at appointment time, and he would skim through it for things that were significant to his eye.  My memory was so bad that I couldn't remember much when asked a question, and this was the only effective way to give feedback to the doc.  Your notes above in this thread are a good start on that approach too, and I would encourage you to keep it up.  Even if your doc doesn't like the 'notes' approach, you may find it helpful to chart your progress and to distill into talking points before an appointment.

Another note:  eat healthy food, with a minimum of junk.  Food is a form of medicine, so feed your body the best quality nourishment you can.  It will definitely help.

Bottom line:  listen to your body, keep your doc in the loop, and you'll find your way.  You're off to a good start.

Keep us posted -- !

[Antoine3323]

Thanks for all the advice guys. I already contacted my physician and was assured that most of the stuff is relatively normal. I am still concerned though. Just wondering if anyone else has been through something similar.

I was thinking that it was a possibility that I am reacting much worse to the azithromycin was because it was a stronger med/dose.

I have chosen to stick with the more aggressive LLMD, and the doc is aware that I am on doxycycline, as well.

I was bitten by a tick more than 10 years ago, and both LLMDs believe I have multiple coinfections. The more aggressive one believes I strongly have both Bartonella and Babesia, as I am going to be started on Mepron in 2 weeks, too.

[leilajax]

Sorry, you are having a rough time!  I started doxy roughly 3 weeks ago and am having a really terrible time myself, so i can't imagine your confusion having added the zith to the mix.  I, too, am having a difficult time telling if i'm just getting worse, having a reaction to the meds, or herxing.  I would think that intense immediate reactions would not be due to herxing.  Like, stated above call your doctor, probably the more aggressive one since they're the one who prescribed you the zith.  I'm jealous you not only have one LLMD, but 2!  Lucky;)
Also, so glad you posted "bulging veins" as a symptom.  Mine are increasingly huge with pressure to boot.  My mind was spinning with awful thoughts about "now, what else is wrong with me".  Always good to feel not alone, but terrible that someone else feels as bad.  Wishing you feel better soon!

[JackieCalifornia]

Welcome.  Sorry to hear you're having a rough time.

Three words of advice:  call the doc.  Tell him/his service/his nurse what you are experiencing and ask what to do.  

500 mg of zith versus 200 mg of doxy are two different worlds, and I would not be surprised you are reacting differently.  Doxy is usually used early in the infection, before it settles in and is harder to evict.  Zith is heftier stuff, to my understanding.

I was on Zith, not doxy, so can't compare, but then again, everyone reacts differently to the different meds, depending on several variables:  what infections you have, how long you have had them, what your personal tolerance is for different meds.

You say above, if I read correctly, that you are on both Zith and doxy?  "I was prescribed 500mg azithromycin daily to go along with my current regimen."  Do your doc(s) know you are taking them both?  I would not do so without medical okay.

Seriously, freelancing is not a good idea.  Pick one of the docs to go with (at least for a while) and use that doc's approach.  No mix and match.

Do call the doc's service and leave a message about all of the meds you are on and what to do.

It may be that the Zith is attacking infections that doxy doesn't touch, hence a more extreme reaction, but that's for your doc to say.  Doxy is the old first-line med for Lyme, but it still has its uses early in an infection, so I understand.

I don't blame you for being a bit wigged out by the reaction your body is having, but really -- don't freelance with meds.  Please go call your doc's service and confess, and ask for guidance.