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Posted 5/3/2014 1:51 AM (GMT 0)
do you all think three months of antibiotics ( with herbs too) followed by a few months of herbal proptocol is a good plan?

!4 days into the antibiotics, as I have said the tinnitus is driving me nuts, and I feel that I am just poisoning my body and I keep even not knowing the state of the lyme---

and then I hear some people get rid of it withouth antibiotics, others say they have to do long term antibiotics,

and as others know it is so confusing.

Do you guys thing three months of antibiotics is a good and safe proptocol? my

Posted 5/3/2014 2:04 AM (GMT 0)
That's a good question. I am finding myself asking the same things.I have been on abx for almost 2 months and feel like I'm poisoning myself. Would like to hear some input on your question.
Posted 5/3/2014 2:16 AM (GMT 0)
it is a really tough question and especially because lyme is so weird and not like  other things-- in that doctors don't quite know how to treat it, some of it is such a guessing game. And given that it has these subtle symtoms that can all of a sudden turn into horrific symptoms. So someone in an early stage can not feel so bad- and then have to make the choice of how to treat it- but not really know.

That is why I stopped the antibiotics after ten days Three times in the seven months since the tick bite , , , ,  and this time I was like well I am gonna power through this time to get rid of this thing once and for all

and then I find myself feeling like I am doing mre harm to my body than good. Yes my panic attacks have subsided but other than that I feel awful on these antibiotics.

But then just doing an herbal treatment could not be effective if I really do have lyme-- which I don't quite know but my igenex seems to indicate. So then I think 6 months or a year from now if I get through this whole treatment I can detox and detox and then just be healthy and move on, versus if I don't complete the whole treatment, then a year from now or more I could have it really badly and have to start treatment all over again. But it ifeels like such a weird guessing game. again, I hope I can get this blood test this wk once and for all (three weeks to get results from it).

Right now the antibiotics feel awful in me and the whole thing feels so confusing.

The other thing is the doctor I am seeing seems to be pretty well aware of the whole body and I think he would ot prescribe the antibiotics if he did not think it wss necessary. But I do need to ask about it. It all sucks and I hate doing this long course of antibiotics. I just want to stop.

I am trying to get through at least thirty days but is three months really necessary??

Posted 5/3/2014 2:39 AM (GMT 0)
Hi Kate-- I share your concerns. I have been on almost 2.5 months of abx and my Rhuemy said these are not good for my body. He said
I do not have LD and I gave him my positive test results which he
blew off.
But since starting tx I have had a few more good days and more strength but not super yet.
So I am going to keep on with the LLMD and tx. I think I should
give it all more time. I have been sick for a long time...so maybe I need to treat it longer to have good results. I figure in a few months I should see some more improvmt.
You need to make your own decision, but if this is the only positive
test you have had among the many tests done then I
would keep on seeing the LLMD and treating for LD.
Posted 5/3/2014 2:51 AM (GMT 0)
Thanks. Thankflly I like my doctor so I am just going to call him on Monday and ask about this all.  I am going to ask him if he has a non antibiotic alternative, and I am going to get this other test. And meanwhile continue taking these antibiotics. ugh.
Posted 5/3/2014 3:07 AM (GMT 0)
I do not take more antibiotic than my body can handle. One and pulsing a second is fine for me. The way to see where you are with the disease is to stop antibiotics. I do not know how sick you were but I tried this at six months. I relapsed so I restarted them. I tried again around 8 months and went about 2 weeks. I have discussed it with the Dr. and he said you need to see where you are with the disease. Everyone is different. His advice to me was to try to get off them but keep them on the counter in case of relapse. I see myself needing them two years or so, God willing.
Posted 5/3/2014 3:13 AM (GMT 0)
Kate this is what you feel comfortable with and can tolerate. The only thing I will tell you is that once the disease rears its ugly head it can be a downward spiral into neuro symptoms. Some people do just fine on herbals. I could not tolerate my mental and physical deterioration that was quickly remedied by the antibiotics. Talk to Traveler here about using a herbs because she was able to use them with very good results.
Posted 5/3/2014 3:18 AM (GMT 0)
thank you. my only symptoms of lyme have been anxiety increae ( and some panic attacks) and fatigue. The ear thing only started once I started the antibiotics. So I did not really feel that sick from the lyme and was just not sure if I even had it but took the igenex test and it was positive so then O started this protocol. So confusing. I have only been on the current antibiotics for 14 days ( but abut a week or two prior to starting the I was on 10 days of doxy). So if I put that together 24 days so far. Doctor says about a month afte rthe symptoms stop but right now my only symptom is massive enraged tinnitus which I just have such a strong gut feeling is antibiotic related--- so how do I even asses my symptoms.

Also it is frustrating a sI just had this clear realization of this all now but actually saw the llmd just two days ago- sort of mentioned all this but was not really clear yet- actually at that meeting was where I even leardned he wanted to do about here months of antibiotics. I understand the theory of longer term antibiotics but the day to day living of it and the side effects are tough. Sorry to comlplain so much. I know the lyme itself is much worse than this if it progresses and that so many of you have it so much worse. I just don't really have anywhere else to process this!! I even have been seeing a therapist and last week she was kind of rude and dismissive when I was talking aobt lyme and my fear of ticks and the anxiety from lyme nd so forth, ugh. so that is why I am processing and trying to figure this out on here but I don' mean to be rude or anything to people who are going through much wore with farther progressed lyme.

I am just so uncomfortable and trying to find the right path for myself and so looking for some advice from people here hwo have experience with this.

Again I am also really glad my doctor seems knowledgaeable. As soon as I can I am going to ask him if-

-another antibiotic may work just as well with less problems (such as amoxi)

or if an all herbal regiment is possible.

And this german test feels like the holy grail or something. so weird that I found a doctor who has access to this test that can supposedly tell me for sure the actual status of my lyme- and I travelled a distance two weeks in a row to get the test and they could not get my blood- so werid- if they had I would almost have the results by now. so I am going once more. and I guess then I can sk the doctor if there is something I can be on that won't make me so uncomfortable or if he thinks I just need to do only this for the best long term result.

Still open to any opinions regarding the question of- if the igenex tests says I have lyme,. and I had some confusing symptoms, is it worth it to do three months of antibiotics?

Posted 5/3/2014 2:06 PM (GMT 0)
Kate--I think it is a great idea to call your doctor on Monday. Do
share with him how uneasy you are about the long term abx. Ask him about his other pt experiences with that and perhaps he would suggest a combo tx.

I know it is a rocky road but I have read that wellness is a possibility....
Posted 5/3/2014 2:24 PM (GMT 0)
Thanks. Right now I am stressing about this chlamydia pneumonia thing. I r have a of cough and chest issues and I hd no idea it was lyme related- but 2 wks in should I still be coughing so much? :(
Posted 5/3/2014 3:20 PM (GMT 0)
I also have fear and doubt about treatment. Wish there was a one size fits all model that I could point to and know if I follow that plan I will get better. It is very scary taking these antibiotics for so long. All we hear on tv is long term abx is bad for us and society. Doesnt hlp out case with family and friends cause they get the tv propaganda and assume we must be crazy to do long term abx as if this is something we want to do ..... all we want to do is find a solution that will allow us to get better and get our lives back to th extent we can. I am in week two of second round of abx tx. I have never liked taking pills, now I have to write down wht I take so I dont forget one each day. I try to comfort myself by saying feel the fear and keep moving forward. Telling myself to wait until after this round of 12 weeks before I let the fear interfere. Forums like this one do help me keep putting one foot in front of the other into the unknown.
Posted 5/3/2014 3:27 PM (GMT 0)
I have had Lyme 15 yrs, the longer you have it the more symptoms you get but mine seemed worse in the beginning like I wanted to die but long term I got more neuro Lyme and that's not fun either. I've been on ANX since December and hate taking 3 different ones, I feel like I am poisoning myself but long term what is the Lyme going to do to me if I don't do the treatment. Or what can ANX do long term? I guess it's a chance we have to take.

My husband just found out he has Lyme but it's already caused a heart problem (branch bundle block) something like that which is an electrical problem to the heart. He also has a tremor in his mouth and hands. Now his ears are starting to bother him, like the tindinitis and back pain and other pains.

I kept my Lyme at bay with Ayervedic herbal meds but it didn't kill it. Now that I don't have access to an Ayervedic doctor, I don't just want to take any herbal but like I said it didn't get rid of it. I do believe with the right herbs you can get rid of it.

I keep telling my doctor I want to get off ANX and do herbals and he says I can't get rid of it that way, maybe he means it will be faster with ANX. He also has me on A-L complex so I do partial herbals.

Just weigh it out and see, but I do know you don't want to full around with it and let it get worse.
Posted 5/3/2014 3:45 PM (GMT 0)
I hate this. so much. I think I will try to just power through the treatment just as the doc says ( but ask lots of questions) and try to put this horrendous thing behind me someday. Right now I feel so weak and feel weak in my chest and am really scared about this chlamydia pneumonia coinfection------ anyone else dealing with that? it is awful. I hate this.
Posted 5/3/2014 3:46 PM (GMT 0)
Hi Kate,

Please don't think in terms of 'others have it so much worse than I'. There should be no competition about this, there is always someone out there who has it worse than someone else. I hope you don't feel any competition out here? Please tell us if you feel it is the case.
This is about how you are feeling, so please don't appologize.

I have been on abx for 15 months in total. Been really scared to take some of them, when I read about their side effects. But I trusted my dr, he is knowledgeable enough to prescribe them and take the risks into account. Strangely enough, the most scary one helped me the best.
My dr switches abx every 2-3 months, to prevent resistance.

If I were you, I would talk to my doctor. Tell him about your worries. Tell him about side effects, he might find it necessary to change to another antibiotic or abx combination. I had it happen several times.

I have to say though that it is almost impossible to predict how long treatment will take. You might get well fast, but you also may not, or coinfections might start showing up.
If you have a good dr, you will be fine! Patience is so important, meanwhile, I started hating that word LOL

I know it is not easy, there is so much information, so many treatment options, so much to think about. Do one thing at a time, or you will start to feel lost (a few months after starting treatment everything became such chaos all of a sudden, and then Trav suggested me to get a whiteboard, a calendar and an agenda (I took 2, one for appointments, and one for medication). I didn't think of it, but it helped a lot). At a certain moment, I stopped everything, and then added one thing at a time. Go slow, and listen to what your body is telling you.

And please come on here if you need support, it can all get rather overwhelming.

MarieLS
Posted 5/3/2014 4:09 PM (GMT 0)
I am feeling much worse about 2 weeks into this treatment than before I started. Right now I have this chest thing I guess the cpn

I hate this

is it reasonable to expect that this hexking is going on 2 weeks in? I had expectedthe herxing to begin the first week but I feel worse now than before. I am so scared. I hate this and just want to be well. I can barely function.

Posted 5/3/2014 4:36 PM (GMT 0)
As for me, I find it not abnormal that you are still herxing. For me very reasonable. I'm 21 months into treatment and I still herx as much as when I started... I'm on a modified cowden protocol now, and the herxes are as bad as on abx. Means it works, but that's kind of a cold comfort wink

Please try to stay as calm as possible, stress will make you feel worse on top of the herx.
Is there anything you can do that can divert your mind a bit? Artwork? A good comedy on tv? something to read? Maybe have a short walk? Invite a friend to have a talk? Take a bath or go for a sauna? Just suggestions, maybe there are other things you like to do?
It is important to be able to step out of every now and then. I know it is not easy at all, I have been there. You should really talk about it with your dr about the anxiety getting so intense, he might give you something as a support.

How does this chest thing feel exactly?
Posted 5/3/2014 4:48 PM (GMT 0)
the chest thing is like a lingering chest col kind of sore and rough

The anxiety is actually a lot better than before treatment. I used to have panic attacks and felt really scared a lot.

Now I just feel- sick. run down and scared of the future but not as much anxiety.

Posted 5/3/2014 5:20 PM (GMT 0)
I also have c-pneumonia. My #'s have gone down and up with treatment. My Dr says it's not uncommon as she's treating lyme and co's. If you are under a dr's care I wouldn't worry about it too much.
As for feeling worse with abx treatment, also not uncommon. It sounds like you are herxing. That can go on for a long time. Are you detoxing? I do daily epsom salt baths, drink lot's of water, charcoal and chlorella. As awful as you feel, if you can remember you're killing off these bugs, it may help. There are many different protocols, herbs, abx's, iv's from what I've read you herx with all of them. Best of luck!
Posted 5/3/2014 6:29 PM (GMT 0)
Thanks. Just this week my doctor gave me liposomal glutathione to help with detox- I notice it right away when I use it so that is good. I am also drinking tons of water and water with lemon and taking lots of baths. Any other suggestions? I just had a weird moment- a good moment actually- where I was outside with my kid playing just now and I felt better for a while- like the chest stuff and tinnitus felt bette for a bit ( not gone but less harsh) and I had a feeing like I will be okay. Like when I feel bad it feels like this will be forever- then when I feel moments of good I feel like- okay  I will power through this treatment, beat this thing, and get my life back. of course I have the classic being sick feeling of- if I only get all the way better I will be so grateful for my life again. so a moment of hope.

Also I am super grateful that I found such a good doctor.

Posted 5/3/2014 6:47 PM (GMT 0)
Although that little bit of optimism faded again and I feel bad again- no surprise there. But I try to remind myself when I am feeling sick and low that things change and pass and there will be health and hope and joy again.
Posted 5/3/2014 6:57 PM (GMT 0)
I've been on ABX for 1.5 months. I have had a lot of bad days, but I'm starting to have some better days now. So hang in there and give your treatment a chance if you can.

I just got one of those portable FIR saunas on Amazon for detox and I love it. It looks a little ridiculous but it feels great to sweat and relax in the heat a little each day. My doctor also recommended doing it to get your body temperature up to better fight the bacteria.
Posted 5/3/2014 7:31 PM (GMT 0)
WWJD, while I'm really happy that you are healing, you can't say this - " the Synergy Protocol is a very thorough and thought-out (well researched) protocol." We know the person that "developed" this protocol and he only devoted 2 months to his "research" in putting together this 'protocol'.

Also, trying to kill off all things all at once can really be harmful for some who are very ill. It can set off cytokine storms and more.
Posted 5/3/2014 8:13 PM (GMT 0)
Katebirch, I would also agree that calling and talking with your doctor would be good. He/she needs to know your concerns and about the strength of your tinnitus. If it is being caused by the abx, then a change of abx should be the least that is done.
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