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Ugh. I have had it.

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Posted 10/3/2012 2:58 AM (GMT 0)
I am at my witt's end here...I am mostly a lurker here but I am just at a loss right now.

I was bitten, best guess, back in '93, treated for some sort of *infection* as noone looked for Lyme then and even though I pulled a tick off me(while living VERY near Lyme CT)my rash was *atypical* and then I had a bad reaction to the abx so had to stop with nothing to replace it. Never was healthy from then on.

Had another bout of unknown illness that lasted a good month on numerous abx after a car accident in '97?

Have been battling Lyme fairly regularly now since the birth of my 3rd child in '05.

I have spent MONTHS on both abx and herbal protocols. Started LDN about 1.5 yrs ago and was able to stop abx and had an illness-free year plus, then I got stung by a wasp(allergic) ended up in the ER and on steroids to stop the reaction...I stopped them after 3 days('roid rage)but the damage was done...been on a downward spiral since then(beginning of May)

Since then I have done 6 weeks of ammox, a month of doxy, took a break, backslid, and am back on doxy and zith...but I feel like its killing me.

I am also on ketoconazole for Candida.

I want to stop the abx. I feel like my immune system is SO trashed from the abx that even if my body WANTED to do its job, it couldn't. I am junk, I feel awful, and I have no idea if it the abx that are making me sick or that I am actually sick. I feel like if I could be abx free, get some good bacteria back into my system and heal my immune system(along with getting rid of the candida) I might have a shot at getting back into remission.

I have a wonderful Dr...but he is not a LLMD. I cannot afford to go to one so its me and my Dr. trying to sort this out. He believes I have Lyme, and I was clinically dx'd in 2005 by a Dr. who no longer takes insurance so I cannot see him(plus he is sort of a dolt) so I am somewhat on my own here.

I guess I am looking for ome advice, btdt opinions, etc. I do not know where to go from here and it is really begining to depress me... :(

 

Posted 10/3/2012 3:55 AM (GMT 0)
Sorry Raw to hear about your situation. LDN? Are you taking probiotics? Only if you can't see a LLMD, you might have to treat yourself with natural abx: Banderol, Samento and for me a very powerful one is A-L Complex by Byron White, it made me herx big time. Without a Lyme Dr, you are really going to have to educate yourself on the natural stuff before starting anything. I'm sure that everybody on here can help you, but, it is, ultimately, going to be your decision.
I would forget about the A-L C for now and when you are ready, start on the Banderol and Samento. I don't dare recommend a dosage. Time to do your "homework".
Best of luck, Dan
Posted 10/3/2012 11:59 AM (GMT 0)
Thanks Dan, as I said, I have done herbal protocols for extended periods of time in the past, and have used Samento, teasel, OLE, etc, and believe me, I have done my homework! :) I actually am the local *expert* on Lyme as anyone who has questions, gets bitten, etc, etc comes to me, emails me, etc while I was *well*...I had accumulated quite a file of Lyme info, websites, etc to give to others....I have just gotten to the point where I am not sure what to do for myself.

I felt likeI was on the right track until the steroid debacle...and I have no idea if the issues I am having are due to the steroids in my system and I need to ride it out, Candida die-off, mold... ho knows. Hen you have had Lyme for the better part of 20 years its hard to know the forest for the trees...sigh.

Posted 10/3/2012 3:07 PM (GMT 0)
First off, let me say that my doctor had Lyme for 20 yrs. as well and she DID GET RID OF IT (!!!) so DO NOT lose hope. Secondly, I was on antibiotics for 2 months for Bartonella (haven't started treating the Lyme yet) and had to come off because I lost my hearing in my right ear which we *think* is due to the meds. Other than my neuropathy and irritable bladder, I feel pretty darn good. Like my body isn't being poisoned or something. I don't know. I know die-off is the main culprit in making us feel terrible and I detox religiously, but my energy is the best it's been in 5 months. We are now going herbal and my doctor said she's had great success with treating with herbs. I've done my fair share of research too (so much for the summer of me, LOL) and I really, really do believe that you CANNOT get better if your immune system is trashed. You need to change your diet, detox take the supplements, etc. I don't think that the steroids helped you at all. I think you pretty much gave the Lyme bacteria steroids as well and God knows we don't need to make them any stronger. I would start with building your immune system back up and worry about killing Lyme later. Also, did you get checked for co-infections?? The Lyme won't go away until you kill those first. Just my two cents. I'm so flippin' fed up with this consuming my life as well. I'm sorry you aren't feeling good. Just remember, people DO GET BETTER!!!
Posted 10/3/2012 10:39 PM (GMT 0)
Raw Runner,
First of all, I'm so sorry that you have reached this point!! It's not an easy path to walk, as you know. I think you already know my story & how long I've been infected, but if not, I can share that with you again.

If you are interested in just Lyme treatment, I can share with you what worked for me - it's not one of the typical protocols that are used. I was on it for 9 months, and for the last 9 months I've been treating other infections without any issues from the Lyme as far as we can tell. I know that I was at 60% improvement after I stopped the Lyme herbs that I took.

If you are interested, please email me or I can share it here on the forum.

Also, as Shabbychic said, are you sure you don't have another tick-borne infection holding you back from healing? That's a common issue.
Posted 10/3/2012 11:25 PM (GMT 0)
Thanks Shabby and Traveler...I know I am not alone :) So, in just the 24hrs since I stopped taking the doxy I am significantly better. It is unbelievable. The Zith does not have the same *poisoning affect* on me. I have Candida, proven by a blood test which I KNOW I am dealing with die off from, and also fairly sure I have bart. Traveler I would love to hear about what you did, I am not opposed to going back to herbals again when I can afford to do so, but I am bound and determined to heal my immune system I am also not in the camp that thinks you have to herx hard and fast in order to heal...how can that help? Beating a dead horse? No. :)

Post Edited By Moderator (Traveler) : 10/3/2012 5:28:38 PM (GMT-6)

Posted 10/3/2012 11:29 PM (GMT 0)
Raw Runner, I got your email address then deleted it out of your post - no need to share it with the rest of the world!! I'll get back to you tomorrow with the info!
Posted 10/4/2012 1:16 AM (GMT 0)
Raw runner - no expert here - just channeling my LLND who says that steroids is the worst thing one can be on with Lyme. That may indeed be why things have kicked up so strongly for you.

Says one of the reasons some people have a really hard time to kick Lyme is that they get mis-diagosed with something like RA, put on steroids and end up a mess.

I'm not sure there is anything you can do about it but be aware and then move forward.
Posted 10/4/2012 1:48 AM (GMT 0)
When you've tried herbal protocols, have you done it on your own, or with the help of an herbalist? I'm not sure what you have/have not tried, but I was sort of in the same boat - abx not really doing it for me, and then the herbal protocol I followed (Buhner's) which worked GREAT for months started dwindling out - now I'm seeking out help from an herbalist in the hopes that she can specialize a treatment plan specifically to me, rather than for lyme disease in general.

Candida is definitely a huge factor, as you know - and I'm a big fan of trusting intuition so if you feel like you need to focus on getting your immune system back on track, then that's definitely worth attending to. I would take some time to focus on diet and on detoxing (including some of the more out there approaches) - and maybe some of the extra stuff that it's easier to take for granted - the whole mind/body connection. For me it seems that I've been getting better as all the different areas of my life are all in sync, if that makes sense. It's just my opinion, but I feel like we need to be in a "good place" emotionally/mentally/etc. in order to heal.
Posted 10/5/2012 1:37 AM (GMT 0)
Thank you for all the replies...I so appreciate it :)
Trav I got your email and will write you in the am as my nook is anawful thing to type on, lol...
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