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» LymeNet Flash » Questions and Discussion » General Support » Scared to start treatment...

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Author Topic: Scared to start treatment...
phorts
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10+ years of increasing fatigue and unexplaind systems. 10+ years of feeling like I have this unknown degenerative disease...10+ years of hope that one day I will find the answer....and now I have it...or so i HOPE, again.

Seeing a highly recommended and seemingly fantastic LLND who's treated hundreds of Lyme Patients and follows Dr B's Protocol along with other thing she's learned along the way. started Supplements 2 weeks ago (almost out now!), but have yet to build up the courage to start on the Abx.

first my excuse was Thanksgiving, i didnt want to feel like hell during the holiday. Then it was that my wife was sick (didnt want to start off with us both being useless), then it was me getting sick (or so it thought, now i just think it's the Magnesium Chloride i started on that night and since stopped)...now i've run out of excuses..and it's time to go.

But im having a real hard time. I'm questioning my diagnosis. I'm question if the treatment hell is worth the releif. Will it work? What if I get a major allergic reaction? Should i try this w/o the Abx like so many people have? AH!

I've read SO many treatment protocols. So many horror stories of people being misdiagnosed and mistreated for YEARS without relelif.

I am in the middle of some major changes in my life (Just got married..how i got through THAT I dont know!, having a baby in 8 months, financial struggles, job insecurity, etc, etc, etc) And life just seems to keep piling up.

I cant afford to be down and out any more than I am, especially not for any length of time.

My Doctor is great and I have a lifeline to her at all times. But she hasnt been through it herself, just seen it, so that's why I'm here.

How did you build up the courage to pop those first pills?

Thanks for the encouragement and insight. You can find my brief story here if you wish to read the details of my situation.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/26067#000000

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jlp38
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I'm 2 weeks in to my first dose of antibiotics. I have to admit that I'm not sure if it was courage or just desperation that made me do it. I'm not a "medical" person. Before I got sick we didn't have so much as tylenol or cough medicine in our house. So it was a big leap for me to start abx. I think you just have to go with your gut and hope you're making the right choice.
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BoxerMom
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I was also scared to start my antibiotics. This whole Lyme thing was overwhelming to me.

With the complicated treatment regimens, anticipated herxing, extended time frame to wellness and expensive doctor visits and supplements, I questioned whether I should treat at all.

But why else was I seeing doctors and scouring medical books for the past 15 years? To try to get my health back. And here was the answer.

I hope this doesn't sound insensitive, but you are not at your most rational when you have a brain infection. You have a serious, debilitating illness that will only get worse and could take your life. You need to treat it.

And it's not that bad. Most likely you'll herx. But that's a good thing. It means you are making progress.

You have an experienced doctor. That is key. You have us here at Lymenet. We are key.

I'm now 2 years and 8 months into treatment, and I'm having my best month yet. I don't even feel sick. In fact, I feel like training for a triathlon.

I didn't have my first herx until several months into treatment. Then I had a full-on brain herx that was like an acid trip. It was kind of fun. I wasn't scared at all. I was relieved that something was finally working!

Look to the future, phorts. You have an unlimited future, but you have to take your pills.

Good luck.

--------------------
 - Must...find...BRAIN!!!

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phyl6648
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Phorts, when I read your post I thought I had written it.. That is exactly almost word by word what I wrote and feel..

Maybe we can support one another.. I am taking my supplements but the antibiotic scares me .. Then so does this disease.

I have gotten some good advice from here ..I have no advice but so can relate to how you feel. I did break down yesterday and took 1/2 of my antibiotic dose..So going to give it a try. but so scared.

Good luck and God bless,

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phyl6648
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Me again, What exactly is your protocol? IV or oral antibiotics? I don't have a LLMD just my internist.
So many unanswered questions.

Congrats. about the new baby but sorry about the financial struggles, you sure aren't alone on that one.. We are facing the same problems or my children are and we are trying to help them some but can't do much...

Would like to hear from you and what you decided..

Prayers

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phorts
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Thank You so much for the kind words and replies. I know what i must do, and i know that I wont know until i do them.

I'm glad i started the supplements first because the only thing worse than feeling like crap, is not knowing why (as we all know FAR too well). So i feared that if i just innodated my body with all these supps and Abx, and DID have a reaction, I wouldnt know what.

So i startd on ALL my supps 2 weeks ago and have been doing just fine (no change either way) on them. I then added the Magnesium Chloride solution (without food or water...bad move). And the next day i felt like i was coming down the the flu (ExTREMELY achy, Fatigued, Sore Back/neck, Fever, Nausea, Cramps). Especially since my wife was just getting over a bigtime GI bug.

I waited another day and the symptoms were gone...so it must have been the Mag. But if i took everything all at once, how was i to know!?

So, maybe tomorrow i'll take just the Zith and start that for a week, and then bring in the Bactrim next week.

I know some people are just gung-ho let's get these bastards out! But, I'm SO sensetive to medication and I've presumably had this infection for a VERY long time...so i just have this real unnerving feeling that these guys are NOT going to go quietly.

Just wanted to see how other people felt when they were faced with the mountain of recovery. On the one hand, I'm glad that I can finally SEE the mountain through the clouds, and the stories I hear about the other side sound blissful and well worth the journey.

On the other hand...that is one big ass Mountain.

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phorts
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Supps:

Probiotics
Fiber
Fish Oil
Serrapeptase
Alpha Lipoic Acid
Magnesium Chloride

Abx:

Bactrim
Azithromycin

Sleep
Water
Diet
Excercise
PMA (Postive Mental Attitude)

Easy Said.

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jlp38
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There are people here who've healed without antibiotics. I do think you have to do something, but it's up to you what that is.
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phyl6648
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Would love to hear from those that were healed without antibiotics..

You sound so much like me in your thinking and the way you are going about the meds..

I am so scared of antibiotics..

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Remember to Smile
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The greater danger is remaining infected & infectious, worsening, becoming severely disabled permanently and passing on LD to others.

I now know I've had LD & co's for more than 40 yrs.

This Spring, I was losing cognitive skills to the Lyme disease complex. After doing well in grad school, I could barely read 2nd grade level.

Often couldn't speak. Would have to write a note, but my handwriting had deteriorated, too.

I could only crawl up my staircase. I'd get totally winded & exhausted getting my mail.

Couldn't cook or clean at all. Barely able to microwave something and use paper plates. For months.

Stopped driving for 6 wks due to focal seizures.

After starting abx, herbs & supps with a great ILADS LLMD, I am psyched to be improving every month! I can walk, talk, read, even run short distances! Driving again, even doing some grocery shopping without needing the elec cart.

The potential benefits of appropriate abx FAR outweigh the REAL life-altering risks of untreated chronic LD. Babesiosis can be fatal. Etc.

Please read this excellent journal article by a CA LLMD. It explains clearly how long-term abx Improve Persistent Symptoms associated with Lyme Disease

http://www.ilads.org/files/publications_stricker_06_2007.pdf

Best wishes,
Smile

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lou
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The time to treat the disease is before you are completely incapacitated. Then it is iffy at best.

My symptoms did not get bad until more than two years after the bite. I had to diagnose it myself, go out of state for treatment, had to get a central line placed although I was extremely medical phobic up to that time. It was clear that I HAD to do something, so I did it and have been doing it ever since.

Maybe you will not be faced with such a bad case as I have, but the only way to find out is to skip treatment and gamble. I did not want to gamble with my health. I could see it was a serious situation.

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Robin123
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You say you're sensitive to meds - so am I. I've learned to test a very small amount of each one, separately, to see if I can handle it. Means breaking open a capsule or cutting a small amount of a tablet.

Then once you see you can handle something, you go up slowly on it. That way you stay more in control.

Also, test days or nights need to happen when you don't have something important scheduled for the next day, in case you have to recover from a response.

You actually never know what's going to happen. I happened to have a wonderful first month on antibiotics, and then I herxed and lowered the dose.

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annier1071
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I was just clinically diagnosed, no bloodwork back yet wtih chronic neuro lyme by Dr R llmd. I was told that I needed IV therapy asasp and they are going to put the chest port in very soon. He started me on OMNICEF..suppose to be the new abx treatment..liquid form...one teas 2x a day this week.If I get dont get dizzierthan I am,2teas 2x a day next week. Ialso have to take sublingual b12, high dose natural thyroid med, culturelle, magnesium, and CoQ something..all from a very expensive pharmacy..I ordered them today..385 dollars to start. I have severe brain shocks, blurry vision, MRI showed brain scars,and serous balance and dizziness. I have not worked in 6 mths and going nuts home. I too question whether Itruly have lyme since I suffered from menieres for 30 years. I did bet bit 2x by lyme ticks but the elisas were all negative this past three years. It is controversial I know and this herxing thing to me seems like it can just be bad reactions to meds..I know I am throwing up from the simple antibiotic he gave me now? I am unsure what I am going to do...putting a picc line or chest shunt is serious stuff and abx in high doses is the same as chemo...so the decision is rough....I know what you are all facing...

--------------------
Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin.

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annier1071
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Phorts..you were told exercise is good with lyme? I hurt so bad in my knees and arms but my LLMD told me it would make things much worse..no excercize for a very long time..then he will gradually build me up.I see how every doc has a diffferent course?

--------------------
Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin.

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momlyme
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There is a section in the ILADS guidelines that states:

If treatment can be continued long term, then a remarkable degree of recovery is possible.

However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
----------------
Later in the same document:
Aggressive exercises are required and should be initiated as soon as possible.
-------------
More from the guidelines:
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.

Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise
program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.

Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B burgdorferi is very heat sensitive...

To read more: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

_____________________

I refer to this document more than any other on Lyme + co-infections.

My LLMD (who I trust) told me my son is much to sick for exercise right now...

I am biting my tongue hard on this one. I think he should at least be stretching. Maybe I am wrong... and I expect too much. At least that's what he thinks.

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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mcg08002
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Hey there!

Take your meds!!!! lol. It was soooo scary for me at first to start ten months ago.

But because I did, I can continue school and run for the first time in 10 months.

With faith, anything is possible! ;-)

--------------------
Stephanie, University Student.

Ehrlichia [POSITIVE]
IGG/IGM AB [H] 1.49
indexLyme AB interp. EIA [A] POSITIVE
IGG P93 AB [PRESENT]
IGG P41 AB [PRESENT]
IGM P41 AB [PRESENT]
IGM P23 AB [PRESENT]
Lyme IGM WB interp. [A] [PRESENT]

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phorts
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Here goes. Taking 1 Zith with food just in case i have a reaction i can know which Abx it is.

Thanks for the support everyone. I'm sure i'll be back.

Wish me luck!

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phyl6648
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Keep us posted. I am starting my clindamycin this morning will get to the doxy later. Prayers for both of us..Oh, I am cheating I am only going to start out on a small dose.. Why are we so scared??
I for one have had bad reactions to meds but lets get real what choice do we have.. I have great gran babies to care for... Best of luck..

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phorts & phyl6648,
We're rooting for you, "ph Class of Oct 2010!" [Big Grin]

Know you're in our prayers, and the supportive LymeNet community wants you enjoying the best of health. [group hug]

momlyme,
Trust that your son is SO challenged now that his body must stabilize before physical therapy. Everyone is unique. Your LLMD has seen your son; no printed Guidelines have looked into his eyes.

I've read and re-read the same pages you quote. My successful LLMD didn't push me to exercise too soon 'cause I was so far gone.

Keep the faith.

Toasting you all with a glass of organic lemon juice in water,
Smile
[spinning smile]

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phorts
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Thanks RTS and other posters! I started my Zithro on Saturday and i'm over the fear hump. No adverse reactions to it and no noticeable Herxing as of yet. Will add in the Bactrim on this coming Saturday and maybe add in the Magnesium the following week.

Just feelin achy and exhausted but that's par for the course. Pretty bad headache today and fighting mild neusea since starting Rx but nothing i cant handle, yet.

THanks for the postive energy...


I was perusing this forum and others and it seems my post is not unique, by any stretch. And when i look back at my question i cant help but think how silly I was, and what i would say to myself only 5 short days ago.

I've been seeking answers for SO long, and tried SO many other treatments for things that were pretty much a stab in the dark. Now theres some pretty concrete evidence and a treatment protocol that has helped 10s of thousands get positive results and all I have to do is take a pill...(well..several hundred pills a day..lol).

Just keep the eye on the prize. Of course it may be easier for me to say now that I've started and had no immediate reaction to it, and the Herxing hasnt started...but i simply REFUSE to continue to let my health degrade without doing something about it..

the only way we know, is to try.... So my original post was more geared to requesting support for entering on this dark journey, and less about whether or not i should do it.

Thanks for the support...

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MamaBear11
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Phorts, like so many others have already said, I could have written your post myself. In my case though, it isn't so much a matter of fear of taking all of these meds, but more a feeling of "why bother?" After all, it has been 15 years for me of chasing my tail. Nothing has worked, and I've tried a lot of things. So why should this time be any different?

I really have to struggle on a daily basis to take all of my meds. I have such a fear of bombarding my body with all of these medications, and I am really scared that they won't work either and it was all for nothing. But I force myself to do it and deal with the consequences and outcome later.

Feel free to check out my blog. I'm pretty sure I have blogged about similar feelings. (Memory problems prevent me from being certain about that, though! Lol.)

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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phorts
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Well Kristin, I just read your blog and, well suffice to say i can save myself some time and energy in setting up a blog myself and just refer people to yours...lol.

We can be Lyme Buddies. [Wink]

I'm curious to find out more about your history, symptoms and treatment..I sent you a PM.

We'll get through this.....I'm sure of it.

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missing
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I was so happy when I was diagnosed and given my meds! I could hardly wait.

Within days! some of the symptoms already disappreared.

It has been a year though, and there are many struggles.

I think the quicker you treat this disease the easier and faster you will recover.

I take my meds on an empty stomach. I want them to work as well as possible.

The more meds I took, the clearer I began to think, the smarter I got, and things didn't smell and taste weird. I was starting to black out too. I was so sick before treatment that I thought I was dying.

Reading "Cure Unknown" really helps, and watching "Under Our Skin" really helps as well.

I don't know about the excercise thing though. I started to excercise a lot when I first got sick. I was up to 35 hours per week of excercise, hot yoga, and weight training. I have not doing any excercise except grocery shopping for 2 years.

I think excercise made things worse for me. My LLMD wants me to rest and sleep more than anything. If I do too much, I get sicker. If I rest and sleep, I feel much better.

Treating co-infections is very important, and require different meds. than abx.

--------------------
I am not a doctor. I have no clue.

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phorts
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So i sent my Doc an update to my LLND about my little RX alteration of just taking the Zith. She told me that she was not surprised that i had no effect either way on just the zithromycin as it's relatively ineffective in and of itself. It assists the effectiveness of Bactrim.

Soooo, i basically just wasted 1/3 of my Zithro stash, and have done zero to aid in the removal of the bad guys.

Moral of the story: Listen to the Doctor.


New plan. Listening to Doctor. Will add Bactrim tomorrow AM.

ugh.

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BoxerMom
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phorts - Relax. You have a long way and many prescriptions to go. I didn't take my first Rx of Alinia at all, because I was too nervous.

It took a couple months to gain confidence in my body's ability to handle all the antibiotics that are required to treat this complex disease. Now, I look forward to my abx changes and the new herx symptoms. With every herx, I gain ground.

But I have had some set-backs, and you will, too. We all do. The point is to keep going. It's a marathon, not a sprint.

Don't beat yourself up. Let the 'chetes do it. Ha!

--------------------
 - Must...find...BRAIN!!!

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BoxerMom
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missing - Ummm....No critcism here, but I think the point of exercise is to work within your current limits. Even the revered B. Guidelines say you must rest as much as your body requires.

If your body says rest, you need rest. If your body says do 30 minutes of yoga, but spend half of it just lying on the mat, you do that.

I commend your efforts, but who exercises 35 hours/week?! With Lyme?!

I'm glad you are resting. When your body is ready for exercise, you'll know. I spent my first year of treatment on my couch. I couldn't have moved if I wanted to. Now, I exercise. Sanely.

Seriously. 35 hours/week??!!!

--------------------
 - Must...find...BRAIN!!!

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momlyme
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quote:
Originally posted by Remember to Smile:


momlyme,
Trust that your son is SO challenged now that his body must stabilize before physical therapy. Everyone is unique. Your LLMD has seen your son; no printed Guidelines have looked into his eyes.

I've read and re-read the same pages you quote. My successful LLMD didn't push me to exercise too soon 'cause I was so far gone.

Keep the faith.

Smile- thanks for reinforcing what the doctor says. She know best! I must remember that!

Phorts- I need the same mantra as you... Listen to the Doctor.

Ph & Ph- Congrats on starting your meds. Adding one at a time is a good idea. Keep up the courage!

"The journey of a thousand miles begins with one step." ~Lao Tzu.

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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phyl6648
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Phorts, I did the same as you .. Started my abx for a week adding supplements slowly. I didn't even take the full dose of clindamycin as was ordered but gradually worked up.. Maybe I wasted all meds and supplements but for my peace of mind I had to do it that way. I felt some was better than none.

I told my doc I was going to proceed this way. Don't think she liked it but she said ok. Monday I am going to add everything.

I guess its mental but I have actually felt somewhat better this week. Or should I say I have been out of bed more. Yesterday I started taking a bad cold and sore throat that has been going around . Goes to show a lot of the colds, sinus must be viral..

Don't beat yourself up it gave you peace of mind starting slowly and who knows maybe was good for your body to go slow..

Might not of helped myself but at least I didn't live in a panic.

I do hope we can get this creature killed..

Posts: 1058 | From VA | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
phorts
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So what's it been, 2 months almost right? well, no major reactions one way or the other with the zythro/bactrim combo so my doc beleives that her suspicion of bartonella was not accurate.

So, she's switching me to a more lyme specific Abx combo of Paguenil and Biaxin. Started with just the one Biaxin today (as per my usual ease into the treatment method). I'll definitely hit the 2nd Abx within a couple days of not having any acute reactions (None so far).

Feeling a bit discouraged to the no response to the heavy, HEAVY Abx that i've been on, but i'm still optimistic and reserving judgement until at least a couple months of being on the Lyme targeted Abx I'm on now.

I was really good with EVERYTHING the first 6 weeks or so. No bread, minimal flour of any sort, no alcohol, extremely limited sugar, etc...AND taking all my supplements regularly... The last 3 weeks i've been not good, drinking occasionally (albeit just a couple beers at most at xmas and NYE) eating pizza, having some sweets..etc... But now that i'm on the new Abx i'll have to get back to the basics.

It's so tough, really, because we are so used to having high expectations and really focusing on instant gratification that, if we don't get it, we bail. However, if we DO get it, then i'll stick to anything. It's also easy to stick with a regimine if you're feeling like CRAP. I know that, when i felt like crap before, i wouldnt even tempt fate by doing ANYTHING even remotely considered not beneficial or counterproductive to my treatment.

SO, hopefully, i'll have some reaction one way or another to this treatment and i will feel that progress is being made and that i'm on the right track. Confirmation is a HUGE thing with me (and i imagine it is with most here as Lyme is such a mysterious and questionable Dx)... I just need something.

Ok, nothing really else to report... hope this finds everyone well and i'll keep ya posted!

Peace.

Posts: 47 | From NH | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
AlanaSuzanne
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"having a baby in 8 months"

phorts since you are pregnant I strongly suggest you seek advice from Dr. J. From what I understand amoxicillin is given during pregnancy to prevent LD in the newborn.

Also, you say that "The last 3 weeks i've been not good, drinking occasionally (albeit just a couple beers at most at xmas and NYE)"

You cannot drink at all now that you are pregnant--I'm sure you know that.

--------------------
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

Posts: 748 | From somewhere | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
phorts
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I'M not pregnant. My wife is. Thanks for your concern though [Wink] Sorry for the confusion.

Really, though, having a baby in 6 months means an even greater urgency to get better. I pray every day that this works.

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BoxerMom
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It's great to hear from you!

Stay the course. I didn't have my first herx until several months into treatment.

If you have Babesia, often nothing makes you feel any different until you hit the Babesia.

Although I would have expected some Babs die-off with the Zith/Bactrim. Were you on single strength (round) or double strength (oval) Bactrim?

Often it takes a few different abx combos to find out which ones work for you.

Best,
BoxerMom

--------------------
 - Must...find...BRAIN!!!

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AlanaSuzanne
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LOL well I'm glad you're not the one who is preggo!

I can appreciate the urgency you feel in wanting to get better. Being here on lymenet is a great resource.

Best wishes to you in your quest for wellness, and congratulations on the upcoming birth of your child.

May God bless your family with health and happiness.

--------------------
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

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Satya
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"People have a hard time letting go of their suffering. Out of a fear of the unknown, they prefer suffering that is familiar."
-- Thich Nhat Hanh

Posts: 64 | From North Carolina | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
phorts
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[Big Grin] Well said. ty.
Posts: 47 | From NH | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
   

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