I have been off abx treatment for the past 10 months, after figuring out and healing from gut problems.
Now it seems clear I need to go back on treatment. The nerve pain is severe, and old problems of no energy, fatigue, fever, etc. are SO here.
Since I still cannot tolerate abx thru the gut, I've been given 2 choices 1) IM bicillin shots 2) an alternative approach in which someone has isolated the Bb and gives it to you in distilled, sterilized form (like homeopathy) to stimulate the body's immune response to it.
I am thinking I will try the alternative approach first. At least until after the holidays.
I have tried taking Samento but it gives me a tummy ache; I seem Xtra sensitive to everything these days.
One Dr. is afraid if I do the bicillin 3 x a week I will develop allergy to penicillin, as sometimes happens.
Has anyone done this homeopathic treatment? Ever heard of it? An LLMD told me about it, altho he said I would be the first in his practice to do this. Most people want the abx. But I really cannot tolerate abx, or, it seems, the herbs, at this point.
I'll do a search on the bicillin shots for info on those. Are they really awful?
I'm still trying to develop a professional life - don't know if this is going to happen.... I get very worried about even managing on my own, being able to support myself.
Thanks for any replies. Not doing well and spirits very low. SO tired of pain.... I can't even tell myself to "hang in there thru this Herx" because I cannot tolerate the abx and it isn't a Herx!
Thanks for any replies! Grateful for support....
Posted by gardenoflyme (Member # 9261) on :
if the homeopathic product is from Deseret i have done 4 boxes of it(LLMD wanted me to use that many)and just completed the treatment this past week.
Has it helped or did it do anything? It definitely produced a herx during vial 2 and 4 (as the box stated it might)going up and the same when taking the product in reverse. Box three and four produced only very monor herxes. You take the first box starting with the strongest product and start the second box in reverse with the weakest.
I only know that this has been the best fall yet. I am on abx with this although much lower doses than in the past.
My LLMD has used their erlichia product personally and had good results.
I believe that other than probiotics, this product, dr zhang's allicin, and himalaya liver care have been a the most useful products for me.
wished i had a way to tell you it would work for you.
i do know of someone else who also has taken a homeopathic product with good results but am uncertain which one it is. she was NOT on abx while using it, although had taken that route for awhile.
Posted by gardenoflyme (Member # 9261) on :
forgot to add i have also done bicillin shots for 5 months early on in the treatment. talk about herxes from hell. of course, i was pretty sick to begin with.
as for the allergic stuff-- i can only say that my doc at the time had me do allergy testing first as i had a strange reaction to rocephin under a different docs care. i was told that if after the first shot or two you show no allergic reaction you probably won't have one unless you stop treatment and restart. that is the most common time to show allergy reactions. Of course there are exceptions to everything when it comes to the human body.
a friend of mine who was allergic to penicillin as a child developed complications with her lyme and needed the shots. doc felt that many outgrow allergic reactions if had in childhood. he ordered allergy testing, she showed negativity, took 10 weeks of shots and has been fine ever since--over two years and counting.
good luck with your decision and hope this helps
Posted by SForsgren (Member # 7686) on :
Bicillin has been tolerable for me, but you still likely need other ABX to cover the other forms. You cannot just take Bicillin. I had increased symptom flares for a bit, but it was not too bad and the shots, though painful, were nothing like what I expected after listening to other people's stories...very tolerable.
Posted by henson2 (Member # 463) on :
Dear Garden and Scott,
Thanks so much for your replies.
Garden, I am very heartened by your message. I will find out if this is the product.
Scott, I do think I need to research bicillin more. Thanks for the heads up on taking it with something else.
I'm grateful for your responses. Thank you
Posted by luvs2ride (Member # 8090) on :
I began my treatment with homeopathy under a medical doctor who is also a certified homeopath.
I was given 13 combination remedies to treat many things. All my lyme symptoms resolved completely except the arthritis pain which increased dramatically.
I took 2 strengths of one remedy called Borrelia by Deseret Biologicals. These vials were taken once a week each and I can tell you it was TKO! It produced major herxing in me I believe because I was not eliminating well. My doctor was 4 hrs away which I think was a bad thing. I was agressive in my approach and hung tough with the herxing. Eventually, I was swollen from head to toe and all joints were severely inflamed. It was at this time I was diagnosed with Rheum. Arthritis.
I stopped the homeopathic remedies and began working on my leaky gut, systemic yeast, metals, etc.
I am thriving under the care of my new doctor. He does not believe in toughing out the herx. He uses pain as his indicator we are going to hard. He also is doing lots to detox me so I pass the toxins on out of my body.
Do I recommend the remedies? Oh yeah! Absolutely. If you want to kill lyme, these are your guys. However, if like me, you do not eliminate the toxic die off well and you herx too much, stop the remedy and then go MUCH slower. Also, work on detoxing. Serious detoxing!!
Posted by henson2 (Member # 463) on :
Hi,
Thanks so much!! I've been feeling so disheartened recently; it helps a LOT to come to Lymenet and "talk" to people who really understand, and who share their wisdom and support. ((A Huge Thank You)))
So it sounds like this distilled Bb product is made by Deseret; I am getting set up with it this coming Weds. I'm really bowled over that others know about it and have tried it.
I have a mainstream MD in my family and had sort of inherited a large dose of scepticism about homeopathy. I would be *thrilled* if it did something for me.
Cave, my LLMD believed that I would not get worse quickly from where I am. He just said I would not improve at this point w/o some intervention. (My gut is still reeaaaly sensitive). And he (the mainstream, evidence-based scientific one!) suggested I consult with this person who has the Bb organism product. The more alternative Dr. wants to do the bicillin shots. (A pretty funny switch).
I am SO heartened to learn that people responded to the Bb organism, the "homeopathy" approach.
Thanks for writing. My spirits need a lift and I'm grateful to you all.
Posted by clairenotes (Member # 10392) on :
I have had extremely good results with homeopathy for many different ailments that I had had to deal with in my life.
With LD, however, I have only had partial success. I was able to reduce the borrelia bacteria, and other bacterial and viral issues that come with it, but not the co-infections.
I am using other remedies (non-homeopathic) to reduce the other infections.
LD requires many different approaches, I think. There are many different medicines and/or alternatives to try, so if one is not working, or only getting part of the problem, there are others to chose from. That is the good news.
Best wishes,
Claire
Posted by gardenoflyme (Member # 9261) on :
just to comment on the dosing schedule of one vial per week as luvs2ride spoke about. I took one vial every three days. it depends on your germ load, etc what the dosing is. if the herx is too bad my doc just lengthens the time between doses. i had no problem every three days but then i have been treating for 5 years now and feel almost normal most of the time.
Posted by henson2 (Member # 463) on :
You guys really give me heart. Thank you so much.
I did not know there was a transdermal patch for abx!! WOW. That is totally what I need! I need the abx treatment - all the Drs agree on that -- but the gut is just waaay too sensitive. I had a whole imbalance of flora, bad bugs getting in, candida out of control, leaky gut, multiple food intolerances, the whole 9 yards.... even now just the Amoxy dose for dental work (due to Mitral Valve Prolapse) will cause major problems. Just one dose!
I guess I'm partly so upset because for a while I could be in denial about being so sick, and just keep pushing forward like it was a viral thing that would go away.... But no, you cannot ignore it. It has me in its clutches and I have to go back to fighting.
As you can see from when I joined, I've been fighting a long time. That's because at the university where I am, no one found the Lyme until I was almost 6 years into the disease. Undiagnosed and untreated for that long. It's a very common story, isn't it?
I have my own evidence for how unreliable the tests are: I got tested at different times and I would swing from negative to positive.... different bands showing up.... the tests clearly mean nothing (certainly Quest tests). Think we'll have to wait until all the IDSA Drs. get disseminated Lyme in their families, or among themselves to see a difference?
Anyway, I'm back into the fight, back to not being able to pretend it doesn't have a grip on me.
Thank you SO MUCH for your very kind replies. Every single person who writes is so very much appreciated. (((Thank you)))
Posted by bettyg (Member # 6147) on :
Hensen, my heart feels your pain, etc. We love you and will help you thru this! Get out those comedy movies to watch, joke books, or funny, belly-laughing books to help you thru. my best to you!
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