posted
For about fifteen months or so now I haven't taken any antibiotics for any considerable length of time at all except for one, where I only ended up taking it for just a few weeks, because of my herxing and side effects I got from me taking it.
It's really hasn't been my choice to not take any antibiotics at all during the time, but unfortunately the herxing and/or side effects I get from taking them, at least the ones I've taken thus far, just wouldn't ever allow me to be able to take care of some of my complicated personal situations, which have happened to me and I must be able to do at this point in my life.
Sadly, in the meantime I've regressed rather quickly and lost any and all progress, which I actually made during the year I was taking them, and unfortunately it doesn't look like I'm going to be able to resolve any of my personal situations anytime in the near future.
Actually, due to the stress of my personal situations I'm feeling even worse than before I took any of them and even though I really don't want to I truly need to start taking at least one again and soon.
If the herxing and/or side effects I get from me taking them makes me too sick though I can't take care of my personal situations, which I have to be able to do.
I really need to find at least one antibiotic I can successfully take without me having too much herxing and/or side effects, including a way I can take it, where I'm not so sick I can only crawl from my bed to couch and back everyday, while I take it.
I've had lyme disease for so long now my bacterial load is very high, plus I have multiple chemical sensitivities, thus I believe that's why I always herx and/or have side effects really bad when I try to take any of them, at least the ones I've taken thus far.
The ones I've taken thus far include several different ones, where I always start by taking a low dose of them, then slowly increase my dosage until I can get to my full dosage if possible just for me to be on the safe side, especially for me to try to avoid me having an even worse reaction to taking a large amount of them at first, which might become uncontrollable for me and could cause my health to become even worse.
The first one I took was Doxycycline, where I ended up having either a bad seizure or panic attack a little while after I started taking it, which my doctor and I thought was most likely a seizure, but was probably just it treating my lyme in my nervous system instead of me just having a drug side effect, but they had me stop taking it and it hasn't happened to me anymore, except I still have my normal lyme panic attacks I've had for a long time since I got it.
The second one I took was Ceftin, which caused me to end up gaining about twenty pounds of fluid after I was on it for a little while, where it got so bad my doctor had to put me on a strong dosage of Lasix and potassium for it, but it just kept getting worse instead of better the longer I kept taking it, thus I had to stop taking it, then it completely resolved.
The third one I took the longest was Zithromax, where I was able to tolerate the herxing and side effects the best out of all of them I had tried taking before, although my liver enzymes rapidly elevated with my first dose, but eventually returned to nearly normal the longer I kept taking it, even after I had slowly worked my way up to taking my maximum dosage.
During the time I was taking it I ended up getting a really bad case of pneumonia, thus I had to stop taking it, as I then needed to take something else stronger instead to try to get rid of it.
I only took one pill of Levaquin for it, which severely affected my nervous system to say the least, and is the worst any drug side effects has ever made me feel, where I really felt like I was going to die for months, but they have since almost resolved except for a few relapses I have every now and then, which my doctor has told me is quite normal.
Sometime during the time I took the three of them for my lyme I also took one sliver of Flagyl, which gave me such awful overall weakness I couldn't even hardly get out of bed, thus I had to stop taking it.
I tried to take Zithromax again after I had my horrible reaction to taking Levaquin for my pneumonia, although unlike when I took it before it ended up causing me to have a really rapid heartbeat, thus I had to stop taking it, but my doctor and I think I probably just took it too early after my reaction to taking the Levaquin, which I was still not doing nearly as well with as I am now.
The last one I took was Clindamycin without Quinine, even though my doctor and I planned for me to take it later with it if I could tolerate it well enough alone, where they prescribed it to me in a liquid form I could carefully and even more slowly titrate my dosage upward, as my reaction to taking the Levaquin still hadn't resolved as much as my doctor and I had hoped it would have, but it ended up causing my lips to swell a little bit and the inside of my mouth to get so raw I could barely eat, which my doctor and I think it probably could have been due to me taking it in a liquid form, although I had to stop taking it.
Right now, my doctor and I feel like I just need to be able to find only one antibiotic, which will hopefully help me to slowly start reducing my bacterial load again without causing me to have too much unbearable herxing and/or side effects, where I can still take care of everything related to my personal situations, which I have to.
I don't believe me only ever taking antibiotics is going to enable me to be able to put my lyme disease into remission, thus during the time I haven't been taking any of them I've been researching other ways to accomplish that with alternative treatments, such as rifing, ionic foot baths, FIR sauna, a steam tent with oxygen and ozone, etc., although I'm not quite ready to incorporate them into my treatment plan just yet, but plan to alongside taking my antibiotics, when I'm more prepared to do so, which shouldn't be too much longer.
If you have any insights, thoughts, suggestions, and/or experiences, which I'd really like to share with my LLMD during my phone consultation with them this afternoon at 3 P.M., please feel free to share them with me as soon as possible.
Even if you end up not being able to do so before then, please feel free to share them with me anyway, as I can always call them back and ask them about them at a later date.
If there are any other alternative treatments other than those I've already mentioned, which you really feel like might be worth me considering incorporating into my treatment plan, please feel free to share them with me too anytime.
I've finally just reached a point to where my pain and fatigue are so out of control they are really limiting what I can do to a huge degree now I have come to realize I just can't hold out any longer on taking at least one antibiotic, while I continue to work toward resolving my personal situations, yet I have no idea whatsoever what to do about it, especially which one will cause me to feel the least sick from any herxing and/or side effects from me taking it, as well as what would be the best way for me to take it to try to avoid that happening to me again as much as possible, where I'm able to take care of my health and personal situations at the same time.
As always, especially for those of you who know and have a lot more experience with antibiotics and alternative treatments for lyme than I do, anything at all about them, which you really feel like would be very helpful for me to know about, if you don't mind taking your time to share it with me I would sincerely appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
a few ideas -
the buhner protocol the cowden protocol
and no matter what killing agents you end up taking, herbs or abx or both, use cleansers/toxin binders to help usher the bad stuff out of your body and alleviate herx reactions. very, very important in my opinion. here's a partial list:
chlorella (lots and lots - more is better than less) apple pectin destroxin MSM sarsaparilla red root to keep lymph flowing beta sitosterol cholestyramine bear garlic (also called wild garlic, ramson garlic) water w/ lemon (also look into lemon/olive oil mix)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Shoot I just lost a post. Sorry you are feeling so bad.
I also took many of those abx that you listed. I too had very hard periods from many of these meds. But first I'll give you my stress talk...
Stress is my biggest enemy. It is so hard on our bodies. Our bodies seem to be on constant alert and when you get yourself in a stressful situation, our immune system just seems to fall apart.
There is so many outside things that happen and set us back. That's life. All you can do is try to do things that can help your immune system. Stess effects us mentally, physically and spiritually.
Have you ever tried abx Biaxin? Recently I started using chlorella and it sure seems it is able to mop up alot of bad guys. (toxins) So maybe adding some things that can help eliminate toxins will help also.
Water is key. Everywhere that I go, my water quart goes with me. Don't use ice water. The organs will like it better when it is room temp or filtered from tap. I had two alternative docs tell me that you shouldn't add lemon, it then becomes lemonade, tea is tea.
Today I'm a water addict. My body craves water if I don't have at least a gallon a day. Also back a couple years ago when I was so toxic, I would use distilled water during those really rough days. It will also help detox.
Anything you can do to help detox with your chemical sensitivies will help. Heather gave you a good list of detoxifiers. Don't try to many things at one time. You body can only handle so much at one time.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Pam, You might look at Dr. S. work on biotoxins and look into testing for ADH and OSMO. Sounds suspect that you feel the need to drink that much water. Take care
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
You have many similarities with my story as well. Ditto on what everyone else said, especially the stress.
The best thing I do for my lyme and coinfections every day is exert myself by either swimming or walking and spending 1 hour doing guided imagery/relaxation and as much yoga as I can tolerate.
Seriously, we've watched my body at a cellular level on only supplements and the above and my Natural Killer count increased, my CD 57 increased and my wbc increased.
However, I cannot tolerate pharmeceutical abx for the most part. I, too herx on even one dose of many of them. some alternatives:
-detox baths (ginger or hydrogen peroxide and epsom salts with essential oils) -calcium bentonite clay ingestion and/or topical -cats claw (slowly) -artemissinin (very slowly)
I've found adding only one new thing at a time - that includes detox baths or exercise or homeopathic remedies - and VERY slowly is the only way for me.
Our bodies are so fragile after years of internal torture, that the slightest thing can set us off. Keep balance in your body and your life, breathe deep and often and take baby steps!
Good Luck!
Jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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posted
You have many similarities with my story as well. Ditto on what everyone else said, especially the stress.
The best thing I do for my lyme and coinfections every day is exert myself by either swimming or walking and spending 1 hour doing guided imagery/relaxation and as much yoga as I can tolerate.
Seriously, we've watched my body at a cellular level on only supplements and the above and my Natural Killer count increased, my CD 57 increased and my wbc increased.
However, I cannot tolerate pharmeceutical abx for the most part. I, too herx on even one dose of many of them. some alternatives:
-detox baths (ginger or hydrogen peroxide and epsom salts with essential oils) -calcium bentonite clay ingestion and/or topical -cats claw (slowly) -artemissinin (very slowly)
I've found adding only one new thing at a time - that includes detox baths or exercise or homeopathic remedies - and VERY slowly is the only way for me.
Our bodies are so fragile after years of internal torture, that the slightest thing can set us off. Keep balance in your body and your life, breathe deep and often and take baby steps!
Good Luck!
Jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Nutramedix Bubbur drops helps me with herxes. I've been taking cumanda since July and worked my way up to a full dose in 3 months. I've made some progress, but I want more.
My LLMD started me on amoxicillin (I herx from that) because I am so sensitive to ABX. In the past I've tried levaquin and Cipro which fry my brain and make me relapse bigtime.
Try the modified Cowden protocol. These South American herbal tictures were presented at the recent Lyme Conference. It seems many docs are using them.
Good luck.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Omnicef seemed like a mild antibiotic for me. I took it along with biaxin, which was not as mild.
Minocycline was one antibiotic I actually felt better while taking. It was the only one when I actually felt better. All the others made me feel worse in one way or another.
Those are my two suggestions for antibiotics so you can slowly introduce something back into your system without herxing galore and being able to keep to the details of your personal life.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Jennie, how did the LLMD appt go?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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As someone else suggested to me, I just joined the buhner protocol group on yahoo.
Are there any other good ones for it, which I can join?
If so, could you please tell me what they are?
I've heard and read a little bit about the cowden protocol.
Where would be the best place for me to go to find out all I need to know about it?
Are there any good groups for it, such as on yahoo or elsewhere, which I can join?
If so, could you please tell me what they are?
I, wholeheartedly, agree with you, no matter what I do to kill my infections, it is a, definite, must for me to use whatever binders I can find to help me to help get the bad stuff out of my body, where it will, hopefully, make my herxing more tolerable!
I have a really hard time with that, so I can, certainly, use all the help with it I can get!
I think, I am, most likely, someone who is genetically susceptible to not being able to detoxify very well, thus why my herxing always gets so bad, when I'm taking my antibiotics!
Thank you, very much, for the suggestions on how I can accomplish that better!
I'm already taking a few of the things you mentioned, but will see about trying the rest of them, as soon as possible!
It, definitely, can't hurt for me to try them, just to see if they will help me!
If I find out they do, then I can just keep taking them for the relief I really need!
Thank you, very much for the good luck wish!
I, certainly, need it, at this point!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I feel so bad for others, like me, who feel really bad too!
I'm so sorry to hear you've had problems, like me, with taking your antibiotics too!
I, firmly, believe stress is my biggest enemy also!
I agree with everything you said about it too!
Unfortunately, even though I'm avoiding as much of it as I possibly can, at this point, there is just so much of it, which I can't avoid!
I am trying to do everything I can to help my immune system, though, as you suggested!
I don't believe I've ever tried taking Biaxin, though.
Is it an effective lyme antibiotic, which you've been able to easily tolerate more than the others I mentioned?
If so, maybe I should ask my LLMD if I can try it?
Chlorella is the first thing on my list to try to help me with my herxing, for sure!
I, definitely, drink a lot of water everday, but I do put ice and lemon in it!
I will quit doing that, since you've suggested it as something, which will help me, just to see if it will!
I'll add distilled water to my list of helpful detox remedies and try some of it too, just to see if it will help me also!
Is it okay to drink it everyday?
I think, I remember reading something about you shouldn't drink it everyday, because it can deplete something in your body, but don't quote me on that!
Do you know anything about that?
I agree, anything I can do to further detoxify my body will help me with my chemical sensitivities!
I'm doing some things already to try to help me with that and, I think, they are, but I'm, probably, just not doing enough!
Yeah, I do think, she gave me a good list of some more things I can try to help my body detoxify better, but will take your advice and not try too many of them at one time, so I don't overload my body!
Right now, I'm, seriously, considering going to the Environmental Health Center in Dallas, Texas to see Dr. Rae, who my LLMD says is supposed to be very good at helping people, like me, who have a lot of chemical sensitivities.
Until I can get my infections treated more, though, I have my doubts they will resolve a whole lot!
Thank you, so very much, for all of your help with this!
I, sincerely, appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hi jennie,
the yahoo buhner group is a GREAT resource. so glad you're joining up with that.
i don't know of anything similar for the cowden protocol. though i'm on a couple of cowden's herbs right now, it seems to me that the whole protocol is really quite expensive, and buhner might be a better bet for you at this time. that said, certainly, and especially if you have access to someone who can accurately muscle test you for remedies, try some of the cowden herbs. all his herbs (and his protocol, too, maybe?) are available via nutramedix (just google and you'll find the site).
right now i'm only on ONE remedy that kills lyme/coinfections, and i'm taking a TON of mop-up agents/detoxifiers. if i don't, i herx like crazy, i get so, so sick. mostly chlorella (loads and loads of it - it's expensive, ugh), which has been so helpful to me. i also take MSM and occasionally destroxin. i've been taking red root every day for awhile. i don't think it helps with herx reactions but i'm pretty sure it assists with the detoxification process as a whole. i take bear garlic every day too, lots of it, my body seems to crave it - it helps with kidney support, and my kidneys are one of my prime lyme symptom hotspots.
but i agree, go slow, see what your body can handle. when you start chlorella, though, if you have a bad reaction, first try taking more, not less. if you only take a little, you mobilize toxins without mopping them up, which will make you feel like crap. so more is always better, in my opinion. of course if you still have a horrible reaction (particularly severe nausea/burping up the chlorella taste), then i would advise you discontinue.
i'm not a doctor, just sharing what has worked for me and what i've read on this board in terms of cautions/warnings regarding chlorella usage.
Yes, I agree with with what has been said about everything, especially stress!
Swimming, walking, guided imagery/relaxation, and yoga sound like they might be helpful for me too!
Thank you for the suggestions!
What exactly is guided imagery/relaxation?
Where can I find out what I need to know about it?
That's so awesome those things you've done have helped you very much in that way!
I'm happy for you and very encouraged by it!
I need some help in those areas too, so, maybe, if I will just find the time to make an effort to try them, then they will help me, like they have you?
I'm sorry to hear, like me, you can't hardly tolerate prescription antibiotics and herx on just one dose of a lot of them!
It's, certainly, a horrible feeling and complicates treating our lyme, for sure!
Thank you for some more helpful detoxification suggestions!
As for the detox baths, how much ginger or hydrogen peroxide, as well as epsom salts with essential oils, including what kinds, would I put in a full tub of warm water, I assume?
Which ones do you add at the same time?
I've done some of that, but never have figured out, exactly, how much I should be using, so I've just guessed!
Maybe, if I could find that out, then it would be more helpful to me?
Yes, like you, I always only add one new thing at a time to my treatment plan and very slowly!
To me, that's the only way I can ever figure out what helps or doesn't help me, as well as if I have a reaction to something I try, then it's usually not as bad as it would be, if I did it quicker!
I, certainly, agree with what you said about our bodies and, always, keep that in my mind!
Thank you for the helpful reminder though, as I do need to be reminded from time to time, since, sometimes, I find myself wanting to get in a hurry, just to get it all over with, so I can be healthy again!
Thanks for the good luck wish!
I wish you luck also!
Thank you, very much, for all of your help!
I, truly, appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I think, they do help me, but they just aren't helping me enough, as I need even more help than they can provide me!
I'm happy they are helping you too!
My LLMD mentioned me taking amoxicillin, but wants me to try to take some other antibiotics first!
I'm sorry to hear, like me, you're sensitive to antibiotics too and the fluoroquinolone antibiotics you took caused you to have such a horrible reaction!
I made a post here about a year ago concerning my absolutely horrendous experience from me taking just one pill of Levaquin for a really bad case of pneumonia I got.
That's a class of drugs I will never touch ever again, period, as I literally felt like I was going to die for months!
Thankfully, my symptoms have slowly gone away, but it was the worst and longest reaction I've ever had to taking any antibiotic!
That class is very toxic and horrible longtime, sometimes permanent, reactions to them really aren't all that uncommon!
I had a very severe nervous system reaction to taking it, to say the least, which is usually what happens if it really doesn't agree with you!
Where can I find the information I need about the cowden protocol?
Is there a group for it, such as on yahoo or elsewhere, which I can join?
Thanks for the good luck wish!
I wish you good luck also!
Thank you, so much, for helping me with this!
I, really, appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'm glad some of them didn't treat you too terribly bad!
I will suggest taking them to my LLMD, if the ones he's just suggested I try taking end up not working out for me!
Thank you, very much, for all of your help!
I, truly, appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'm now on my second, soon to be third, day of Rifampin.
If it doesn't work out for me, then I am to try to take Erythromycin instead.
If me taking one of those doesn't end up working out for me, then I am to call to get a different antibiotic called in for me to try to take and tolerate better.
Either of the two I am to try to take, right now, are supposed to be my best choices, though, so I hope I can, at least, tolerate taking one of them.
So far, I've had a pretty good increase in my pain and fatigue, but that's about it.
I hope it stays that way too, but I'm only on one-forth of a dose, so far!
Every 4 days I am suppposed to increase it another forth, until I get to my full dosage, which is 300mg twice a day.
That means in about 14 more days I'll know a lot more about how well I'm going to be able to tolerate it!
I've read a little bit about it on here and some say it's hard to tolerate, while others say it isn't.
So, I realize, I'm just going to have to try to take it, just to see how well it will agree with me.
It's my understanding it does treat lyme, but not as much as some of the other antibiotics, which I've tried to take.
Also, it mainly treats Bartonella, but also Erlichia and Chlamydia Pneumonia, in addition to it, possibly, being a cyst buster for lyme.
Please feel free to correct me, if I am wrong, as it would be good for me to know, but that's what I've gathered, thus far, from my reading of posts about it here.
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Thanks for providing me with the information to join the buhner group!
I haven't had a chance to check it out, thorougly, but based on what I have looked at on it, thus far, I think, you're right, it looks like it's a great resource for that!
Thanks for more information about the cowden protocol!
I just found out about a naturopathic doctor not too far from me, which I plan to make an appointment with soon, where I intend to talk with them then about the protocols and more.
Hopefully, they will be able to help me with them and more, as their website allowed me to gather some good information about them, which sounds like they are very knowledgeable and capable of doing a lot of things in that area of expertise!
Thanks for the additional information about the things you are doing to treat your infections!
I'm so glad they are helping you!
I will, definitely, keep them in mind to ask about during my appointment with the naturopathic doctor, too!
Thanks for even more helpful suggestions, as to what I can do to help treat my infections, in addition to the wise information about Chlorella!
I, gratefully and truly, appreciate all of your help with this!
It means a lot to me for you to take your time to do so!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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