30 days of Azithromycin... and nothing?

[Jyes]

After almost 2 years of having I was able to finally see a LLMD. A wonderful man who took his time, listened to me, talked to me, and made me feel comfortable.
He said I could be looking at 3-6 months of treatment, possibly IV. He feels I'm too far into this for things like Cat's Claw, etc. So it was a good and bad appointment at the same.

It ended with him starting me on 500mg Azithromycin for 30 days. I have 8 days left and then a phone consult with him to decide what's next. My concern now is that NOTHING has changed. If anything, I feel worse. Initially I thought maybe it was a Herx. But it's been 3 weeks. Is that normal?

My biggest problem is this: My eyes and face. I live with a feeling 24/7 that my eyeballs are being ripped out of my skull. And any kind of light makes it worse. It's hard for me to go outside. And going to places that open big and open, NO NO. I get panic attacks and can't focus and have to leave. That means the grocery store, etc.

So now I'm sort of second guessing whether the Lyme is my eye problem or not. I've been to my eye doctor about this 2 times and he's ran every test possible to show me my eyes are perfectly healthy. So maybe it's my sinuses? Even then, could the Lyme be in there doing bad things?

Ugh. I'm just annoyed with being confused about all of this. I used to enjoy getting out of the house and going places. Now I'm afraid. When I look out the window, my eyes hurt so bad I have to look away.

So... I know that I'm not done with medicines yet, but I thought after 3 weeks of 500mg's, I would feel something better. Or does it take longer?

I won't lie... I'm terrified. Terrified I'll never get better, feel better, think better, and just be better. I'm about to turn 30 and I feel like my life is over. Gosh, I hate typing that, but it's the truth. I used to run 20+ miles a week. I used to go to concerts, the mall, stores, dinner, and just have damn fun. Now all I do is try to grasp at my surroundings, wondering if the sun will be too bright or a noise might hurt my ears or that I'll forget something important.

[Gnienay]

I am no longer on Doxy.  I was put on clarithromycin, amoxicillin and I switch out every 4 days between tindazole and hydroxychloroquine.  The amoxicillin 875 mg 2x per day had to be substituted for cefuroxime because I couldn't tolerate the taste.  Made me sick.  I went off the antibiotics for a week to rest and to detox a bit.  I see my LLMD in 2 days.  He will probably change up something.  I am still having daily anxiety/ panic attacks.  My CNS and HPA axis has been affected...not resolved yet.  I can no longer work because of these daily attacks.  My anxiety follows my diurnal cycle 8 am to 5 pm.  I am fine by 6pm albeit tired from fighting the anxiety all day.  Does anyone else have this symptom?  Called diurnal anxiety.  Thanks Greta

[JackieCalifornia]

Hello -- I just read your posts above ... is there a reason your doc is treating with doxycycline instead of other antibiotics?  The reason I ask is that everything I recall reading about using doxy against Lyme (except almost immediately after the initial bite, which is very difficult to pinpoint as to when).  The Lyme bacteria are less susceptible to doxycycline the longer you have been infected with Lyme.  Just wonderin' --

Take care!

[Gnienay]

You will be dealing with Lyme for a while.  3 months minimum on meds.  I took one month of doxycycline and it was rough...My LLMD to a month to get my body in detox mode before restarting.  Using homeopathic remedies.  I am now on my second course of doxycycline which I expect to last at least 3 months plus my doctor has prescribed other things to help boast my immunity, as well as help me detox.  I'm starting week 4.  Last week was horrible with the anxiety and panic.  I have felt like you, like this is surreal, a bad dream....when will I see improvements.  Lyme disease affects everyone differently.  I have read many times about it affecting the eyes.  I have had blurry vision.  I used to vegetative...going out, working out at the gym.  Now I can barely leave my home.  It is all very stressful.  I have to have more patience and stick with treatment.  You too.  My hormones are affected.  My stomach hurts constantly, it's in knots...so bad I cannot tell when I an hungry.

Lyme affects many systems.   Mine is mainly Neuro and endocrine.  The above person who commented was right,  the bacteria is killed off at a certain stage in its life cycle...that is why, don't stop the meds.  Or do as your doctor directs.  They may change your meds too because the bacteria tries to resist and will change from.  Different antibiotics work on the different forms it may take.  Be sure to take macrobiotic and vitamin c and anything else to keep your gut healthy.  The antibiotic threrapy will do a number on your gut.  You will spend months restoring it.

Keep posting.  I am with you.  Hard to stay positive all the time.  3-6 months does not seem that long...but when you are suffering everyday, it can feel like a lifetime.  We have to hang in there.

[JackieCalifornia]

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You say, "My biggest problem is this: My eyes and face. I live with a feeling 24/7 that my eyeballs are being ripped out of my skull. And any kind of light makes it worse. It's hard for me to go outside. And going to places that open big and open, NO NO. I get panic attacks and can't focus and have to leave. That means the grocery store, etc."  Be sure to tell your doc, and if you are concerned before the next appointment, don't hesitate to call the doc's office and leave a brief message about your symptoms.

You say, "So now I'm sort of second guessing whether the Lyme is my eye problem or not."  Until your doc says your eye issues are NOT related to Lyme, I would assume that it IS related to Lyme.  Although I didn't have any eye symptoms when I had Lyme, I mentioned to my 'eye specialist' doc (an ophthalmologist) when I went in for an annual eye check that I had been diagnosed with Lyme and was under treatment.  I was braced for the ophthalmologist to shrug or scoff at my Lyme diagnosis (as many other non-Lyme-docs did during my treatment months), but the ophthalmologist was quite interested in my Lyme diagnosis and said it's important for him to know.  

You say, "I've been to my eye doctor about this 2 times and he's ran every test possible to show me my eyes are perfectly healthy. So maybe it's my sinuses? Even then, could the Lyme be in there doing bad things?"  If you're not comfortable that your eye doc may blowing off the Lyme diagnosis, ask your Lyme doc for the name of an eye doc s/he would recommend.  That's a fair thing to do.  I would.

   --->>>  Also, I would be sure to see an ophthalmologist, not just a optician or optometrist.  An ophthalmologist is an MD who specialized in eyes, while an optician only makes glasses and an optometrist is somewhere in the middle -- but only the *ophthalmologist* is an MD, and they do understand Lyme.

You say, "I know that I'm not done with medicines yet, but I thought after 3 weeks of 500mg's, I would feel something better. Or does it take longer?"  Three weeks is a very short time to treat Lyme:  Lyme bacteria have very slow reproductive cycles, so think months, not weeks.  Even after antibiotics are done, your body may feel like you've had a bad case of the flu or have run a marathon.  It took me another 6 or so months AFTER treatment was done before I began to feel like a human again, and a full year to feel like the 'old me'.  Your mileage may vary, but don't push yourself.  

You say, "I won't lie... I'm terrified. Terrified I'll never get better, feel better, think better, and just be better. I'm about to turn 30 and I feel like my life is over. Gosh, I hate typing that, but it's the truth."  That's a reasonable thing to think and to fear, and it's good that you have recognized how you are feeling.  As mentioned above, Lyme is a hard thing to get through, but it does go away with appropriate treatment and a wise MD and the passage of time.  Be kind to your body even after you are officially 'cured', because like any major illness, Lyme leaves a bit of wreckage behind, but it will gradually go away.  For me, it was about 6 months after treatment ended that I began to feel like the old me, and a year or so before I was totally back to normal.  Be kind to your body, and it will come back.

... And one more point about how you are feeling:  Lyme messes with the whole endocrine [hormonal] system, from what I read, so your reaction to how you are feeling is *not* out of the ordinary.  I went through that too.

You say, "I used to run 20+ miles a week. I used to go to concerts, the mall, stores, dinner, and just have damn fun. Now all I do is try to grasp at my surroundings, wondering if the sun will be too bright or a noise might hurt my ears or that I'll forget something important."  Yep, sound like Lyme's tricks -- it is a major illness.  But you will have the last word.  

I'm now a good five years beyond Lyme, and real life does return.  Just be kind to your body and yourself, and to your family and friends -- it's hard on you, and to all of them too, just in a different way.

All good wishes to you -- let us know how you do --

[JackieCalifornia]

Welcome to MedHelp Lyme --

Glad you have found a good Lyme doc -- that makes a great difference in diagnosis and treatment.  

You say, "He said I could be looking at 3-6 months of treatment, possibly IV."  There is not a one-size-fits-all approach to Lyme, for several reasons, and 3 to 6 months is not a particularly long treatment period, based on my experience and that of others.  It all depends on what specific infection(s) you have, because different meds are often needed for each infection and can't be done all at  the same time.  

I don't remember exactly how long I was in treatment (meaning taking antibiotics) for Lyme and a co-infection that comes along with a Lyme infection, but the meds are often given piecemeal:  first come the meds for infection #1, then when it's gone, move to the meds for infection #2, etc.  As I recall, I was on various antibiotics for about 9 months total.  When treatment is over, there is often still a recuperation period of some months, when you may feel tired and worn out just because of the war your body has been through.  Bottom line:  there's no quick fix, but the results are definitely worth the wait.

You say, "He feels I'm too far into this for things like Cat's Claw, etc."  There are two general approaches to Lyme treatment:  modern medicines [like antibiotics], and herbs.  Both meds and herbs are chemicals in the larger sense, but docs usually treat one way or the other:  chemical pharmaceuticals [antibiotics] or herbs [from Mother Nature].  I was treated with antibiotics, not herbs, and it worked very well.  If you want to try herbs, I would NOT take them or any other medications not specified by your Lyme doc without telling the doc first.  More is not always better when it comes to meds, and it could be quite a bad result.  

You say, "So it was a good and bad appointment at the same."  There is nothing bad about not taking herbal treatments.  I took various antibiotics as prescribed by my Lyme doc, and it worked splendidly.  

You say, "My concern now is that NOTHING has changed. If anything, I feel worse. Initially I thought maybe it was a Herx. But it's been 3 weeks. Is that normal?"  Three weeks is just a beginning.  Lyme bacteria have a very slow reproductive rate, and it is when the bacteria are reproducing that they are most vulnerable to the effects of antibiotics.  Two weeks antibiotics may be enough for an earache, but Lyme is in a completely different league.  Above all, do NOT stop the meds before your MD says to do so.  If you are having bad side effects that aren't tolerable, CALL your doc's office and do not change the treatment in any way until your doc says okay.  

Bottom line:  no freelancing on meds.  You could mess up the treatment and cause yourself problems by not following the doc's orders in even small ways.

You say, "It ended with him starting me on 500mg Azithromycin for 30 days. I have 8 days left and then a phone consult with him to decide what's next."  Okay.  

"My concern now is that NOTHING has changed."  Your treatment is still in process.  Too soon to feel wonderful again.  Relax.  Lyme works at a much slower speed than many illnesses, and the same goes for treatment and even after treatment.  Lyme is a major illness, so prepare for a long haul:  but it's worth it to stay in the fight.

"If anything, I feel worse."  That's not uncommon, to my understanding.  Again, Lyme works at a slow speed.  "Initially I thought maybe it was a Herx."  Might be.  Keep a written daily diary of this sort of feelings and reactions (I kept my on my computer and printed out new comments before each appointment with my Lyme doc.)  

You'll be surprised what you forget during all this, so take the diary/printout to your dr's appointment to show the doc and/or to use it as notes for yourself while you tell the doc how you've been doing.  My doc got a copy, and I kept one in my own files at home.  This approach kept us both on the same page.  

(Some docs don't like this approach, but it's worth a try, and in any event, my memory was still a little dodgy back then, so when I went to an appointment with my Lyme doc, my written/typed notes refreshed my memory before and during the appointment.  I also gave the receptionist a copy of my notes that the doc took into his office to read before talking with me.  That way the doc saw the details and had a copy for his files.)

You say, "But it's been 3 weeks. Is that normal?"  Might well be.  Lyme affects everyone differently, and if you have any co-infections along with Lyme, that can affect how you feel too.  This is another reason to keep a diary -- doesn't need to be long and fancy -- just a paragraph per day can do.  (How I felt, how I slept, what meds and supplements I took in what doses, and anything out of the ordinary.)  The doc sees things in your notes that you might not think to mention at the appointment, and small details can add up to big data for the doc.

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