Hi all, I'm new to the board.I'm in Canada I've been sick for 13 yrs, diagnosed with Lupus last April, then diagnosed with lyme last Aug. I've done a ton of research on lyme since. I saw an LLMD for the first time 2 weeks ago and will see a homeopath tomorrow. I've been sitting on the fence on whether to take abx, natural meds or both. I'm terrified of taking abx. My Igenex results came back cdc neg, but the lyme bands were IND so my LLMD feels I have lyme. I hate taking meds thinking I may have it and not truly knowing. I'm all for taking all natural meds, but feel I may want to blast the lyme first and asks questions later. I was also thinking of doing the Cowden
Your thoughts?! Thanks Jen
Posted by tdtid (Member # 10276) on :
Jan,
I'm glad you found us. Sadly, I don't think anyone can tell you what you should do since there isn't any one set protocol.
I can talk about my personal experience, but even that may not fit what would work best for you. It's sad when we have to research ourselves, so much, just to figure out how to combat this illness.
For me, I did BOTH. I went the route of a lyme specialist that is a N.D., but is in an office with other lyme specialists that are M.D.'s so that lead me personally down the path of doing BOTH.
I honestly don't know the right answer, but was in a bad spot by the time of my diagnosis FINALLY, that I figured I would put trust in my LLMD and he personally recommended abx AND herbs. Mostly Zhang in my case, but he's got me on others at this time as well.
There is a wealth of information out here and hopefully you will feel a path that is right for you. I would DEFINITELY treat it though since you say you were sick so long and it sure beats the alternative of ignoring it until it gets worse.
Good luck and continue with your LLMD. They are our best courses of action in all this. Although working with a N.D. on the side is helpful too. Good luck.
Cathy
Posted by sixgoofykids (Member # 11141) on :
I have never been one to take pharmaceutical meds ... I always took herbs ...
However, I am on pharmaceuticals now. I take about three times as many supplements as I do drugs and I focus on diet and detox.
My LLMD, who is holistic, thinks it's best to beat down the bacterial load with abx and build up the immune system with herbs/supplements.
At some point, I will switch over to Cowden, but not until I'm finished dealing with coinfections and lower the Lyme load (which I think I've done).
I am in the process of adding Limited Cowden to my abx protocol -- Samento, Cumanda, Parsley, and Burbur.
I have always been of the belief that properly used, abx are helpful .... I think most doctors in the world blindly prescribe them, and that is what's dangerous. I am trying to use them in a helpful way, and in conjunction with the natural stuff.
Posted by Peacesoul (Member # 13709) on :
Hi, thanks for the input. I've been sitting on the fence for a while now wondering how I should proceed. Reading this board, along with my other lyme board and with the info from my LLMD (who is an MD and ND), I am pretty sure I will start with abx, adding some homeopathy, then finish with homeopathy. I'm lucky in that my ND is actually one of the top ones in my city and is my best friends sister ;-) Though she feels I should not take any abx, I think her experience with lyme is limited.
I am also anti meds, but I'm faced with no choice it seems. I didn't want to take time off of work (never did in the 13 yrs I've ben sick), but think I may have to. I can't face working knowing I'll prob get sicker at first from the meds.
Do you folks work full time?
Posted by CaliforniaLyme (Member # 7136) on :
WELCOME*)!*! !*)!)*!*)!*)!
Glad to have you on the board!*)!*)!! They thought I had lupus when I was younger but it went away with abx- and then when I got Lymed all my lupus symptoms came back PLUS some- adn that went away with abx, too- but took a lot longer & I needed IV- We also had a local woman with lupus/Lyme who also had Babs which I did as well- Babesiosis is a TBD often coinfecting with Lyme!!! I did return to work full time when I got better but am now home with my children as a stay-at-home MOm- Best wishes for a great recovery, Sarah 100% symptom free
Posted by Lymetoo (Member # 743) on :
Welcome!! Personally, I would do abx first, then plenty of natural stuff.....oh, and plenty of good supplements DURING abx treatment.
Be sure to get a good quality probiotic and watch that diet!!!!! No sugar, no simple carbs, etc.
Posted by Peacesoul (Member # 13709) on :
hi....yeah this lupus/lyme connection is something else. When I went to my Rheum with the fact that I had lyme and how I feel maybe lupus really us lyme... he was very obnoxious with me at first. Thought I was nuts! Then I started to email him info on lyme, info from many reputable places. Then when I needed to see an LLMD in the US, I knew I was in trouble, b/c I needed a DR in Canada to fill all the rx's (if I was going to take them). I emailed my rheum the info the LLMD sent me and forwarded all her emails to the rheum. I guess he thought about it, b/c he started to reply asking many questions and then agreed to treat me and work with the LLMD. He's actually off to the Rheum conference in Boston today and is going to search out info on lyme. He is so on board and is now a believer. He told me today that he feels some of his other lupus patients may have lyme and he is going to check with them if they want to get tested. We have no good testing here in Canada so you need the money to send blood to Igenex. He runs the largest lupus clinic in my city (Montreal), so his voice may help us all one day (I hope)
I'm a health buff (weight train and eat well) so have been on a smart diet for years and also have been taking probiotics for many years. I think I was ahead of the game. My LLMD thinks my symptoms are less severe from others b/c I was into my health. Who knows, but I will keep up a great diet and TRY to stay away from sugar. I need to have my sweet tooth pulled ;-)
Thanks again all.
Also, just to mention, the reason why I just spoke to my rheum, I asked him to fill the scripts given to me by the LLMD, which he did. I will pick them up later and start tonight :-) Wish me luck
Posted by sixgoofykids (Member # 11141) on :
I've been a health buff for years, too, and I think it really did help. I lived with the Lyme mostly in remission for 12 years after my last flare up (didn't know it was Lyme until last Dec.) until about 4 years ago when I got sick and couldn't get better.
I do not work, and when I started meds I wouldn't have been able to work, I had gotten that bad.
I think it's a good idea to take some time off if you can so that you can spend time detoxing, resting, exercising, etc. I think the payoff of making getting well your job is great, if you can do it.
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by sixgoofykids: I've been a health buff for years, too, and I think it really did help. I lived with the Lyme mostly in remission for 12 years after my last flare up (didn't know it was Lyme until last Dec.) until about 4 years ago when I got sick and couldn't get better.
I do not work, and when I started meds I wouldn't have been able to work, I had gotten that bad.
I think it's a good idea to take some time off if you can so that you can spend time detoxing, resting, exercising, etc. I think the payoff of making getting well your job is great, if you can do it.
I think I'm at the point where working is becoming very hard. I've always worked even when really ill, but I think I need to take some time off for me. Like you said, to heal. I do have disabilty insurance from work, so I may as well use it. But still a really tough decision to leave for a while.
Posted by map1131 (Member # 2022) on :
Peace, IMO you might be better off starting with ABX, like you where leaning to in your last post. Doesn't mean months and months or years of abx taking, but something to lessen the bacterial load as quickly as possible.
Your ND that's not real familiar with lyme is going to learn a thing or two from you. Let your ND help you focus on detoxing and mopping up and ridding your body of dead stuff. It is a must. Also I would recommend the best probiotic available in larger doses.
You've been ill for 13 yrs and you will need patience with treatment of TBI's. Slow and slower seems to be the process that works best. Don't start too many protocols at one time. Maybe add one every 2-3 weeks, so you can tell if something is not agreeing with you.
Pam
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by map1131: Peace, IMO you might be better off starting with ABX, like you where leaning to in your last post. Doesn't mean months and months or years of abx taking, but something to lessen the bacterial load as quickly as possible.
Your ND that's not real familiar with lyme is going to learn a thing or two from you. Let your ND help you focus on detoxing and mopping up and ridding your body of dead stuff. It is a must. Also I would recommend the best probiotic available in larger doses.
You've been ill for 13 yrs and you will need patience with treatment of TBI's. Slow and slower seems to be the process that works best. Don't start too many protocols at one time. Maybe add one every 2-3 weeks, so you can tell if something is not agreeing with you.
Pam
Thanks Pam :-) I started zithromax and Nystatin tonight. I also went to see the ND for the first time. She is familiar with lyme, but yes not as much as me. Not that I ever wanted to know this much about lyme ;-) I will start with the abx and she will help me detox. In a few months, I will go off the abx and she will get me on the homeopathic regime. I guess with lyme it's all hit and miss. Thanks for the input :-) Jen
Posted by Lymetoo (Member # 743) on :
That's great about your rheumie being receptive. Hope he doesn't change his mind after the conference!!
Posted by map1131 (Member # 2022) on :
Peace, I believe nystatin is a yeast killer, which is good but also need to replace the good bacteria in your gut etc that abx will wipe out. So you will need probiotic also.
Many experience die-offs from yeast killers also. I've never done the nystating, but have read many posts on how some react to it.
Pam
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by map1131: Peace, I believe nystatin is a yeast killer, which is good but also need to replace the good bacteria in your gut etc that abx will wipe out. So you will need probiotic also.
Many experience die-offs from yeast killers also. I've never done the nystating, but have read many posts on how some react to it.
Pam
thanks for the input. I've always been a big user of probiotics (been taking them for over 8 yrs due to ibs), so I was ahead of the game on that one. I think I may react to the die off, but I'm ready for it. Heck, I've been sick for so long not sure what else can phase me. I started to juice so hopefully I will keep the yeast to a min. Thanks again....you guys are so great
And I HOPE my rheum doesn't change his mind, but I doubt it, he was so keen on helping me. Keeping my fingers crossed ;-)
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