posted
OK...so after 3.5 years of abx (2.5 of oral, 11 months of IV), I am consulting with more alternative docs next month. I've been off of abx and most everything else for 7 months.
Basically, for me, the abx haven't helped much, but I sure gave it a go....for YEARS. So, maybe it's metals, mold, parasites, KPU, candida etc. etc. etc. I've read many of the ideas until my head spins. I pray, the docs I see can help me regain some health, figure out some of my barriers and lessen the horrific neuro symptoms that I have daily.
I have a good "Lyme friend" that's been on abx now for 4+ years, 1.5 - 2 years of that has been IV, still on IV. Her along with all 4 kids.
All are still sick. They have to decide what is right for them and find their path.
I understand the marathon not a race mantra.
My question....has anyone here seen improvement on abx, but it took 3-4 years to start seeing it? If so, please let me know. I can't steer the direction for my friend, but can give her information that I learn. Thanks. TS
Posts: 566 | From West Coast | Registered: May 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know it so hard to think that it should take years to treat / manage this. But, look at those with HIV or other serious health matters.
IMO, lyme can be just as complex and devastating as HIV. It's very intricate and demands full attention for as long as necessary.
Still there are many ways to approach it. In one of the treads above, see the LL ND thread. RIFE might be considered. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
^ What is rife? Im just wondering. I see so many people on here comment about rife and I haven't the slightest clue what it is.
Also. to answer your question. i dont think its all that crazy that it can takes years and years of treatment
it really messes up your body. like you said. candida, hormones, thryoid. detoxing capabilities. etc
it can take a long time to balance things out so that you can feel better again.
did you get your detox gene thing tested? maybe you have an inability to detox....
Posts: 995 | From somewhere out there | Registered: Oct 2010
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Keebler, thanks, as always. Yes, I guess there are many ways to approach it, so I should just figure out my path and not try to influence my friend's; she's confused, scared etc.(much like me), but so much more so as it involves her 4 children. As any mother would know, you'd trade places in an instant with your kids. No one should have to sustain what they're going through, unimaginable, unless you've been there, really.
Lymegal23, I will be getting my HD gene(s) tested...I'm sure I don't detox well, have been told so, but don't remember test or specific gene information. I am having further testing next month - it's on my current blood work lab req for my new LLMD. Also, do a search for Rife (yes, I own one, have tried it for months), wish it was helpful, didn't see any improvement, though sounds like an effective tool for some. You'll find a plethora of information on it.
I guess - for me, with little to no change on the various, aggressive abx, I wondered why would it change now, after 3-4 years? So I quit.
I think it is member Nefferdun who sometimes has stated, "insanity is repeating the same thing over and over and expecting different results" (or something like that anyway). It rang true to me, that's how I was feeling, so needed to re-evaluate.
If someone can tell me they were put into remission after 4,5,6,7 years - I would certainly share that with my friend to give her motivation/hope.
If I don't hear this, I will continue to just try to be supportive and let her figure out what she thinks is the best path for herself and kids.
I'm still blown away by this crazy illness...how doubted, questioned etc. If they could just walk in our shoes, the truth would be known, sigh. One crazy ride....thanks for input. TS
Posts: 566 | From West Coast | Registered: May 2008
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(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
tickssuck,
I was on abx for 4 yrs, incl 5 mos of IV Rocephin. What turned the corner for me was antiparasitic herbs and salt/c. Parasites/worms can play a MAJOR role in lyme disease, and is often an overlooked co-infection of Lyme.
Dr. K. treats all of his patients FIRST for parasites and SECOND for lyme and co. I can't for the life of me understand why these doctors are not treating for this infection.
Burdorfer found Filarial worms in the ticks he dissected, and Eva Sapi is finding them in over 40% of the ones she has dissected.
Check out www.lymephotos.com I had EVERYTHING pictured here come out of me after 6 mos of antiparasitic herbs and salt/c.
Google parasite symptoms and check out the symptom list at Humaworm. Do some research on parasites as well. Some here are having success with Ivermectin and doxy.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I have to say that I also question the idea of several YEARS of ABX as the answer , though I do not intend to offend . Even people with TB do not treat that long ( in most cases ) . I question the idea that we may still be taking ABX and are still sick , but the lingering symptoms are from something other than lyme . However , I am no scientist , so my opinion is nothing significant . I can understand why some doctors do not want to use ABX for years, as there are INDEED consequences that may be negative, like kidney and liver issues , and worst of all resistance to ABX . When I read stories about flesh eating bacteria and how fast it spreads , I feel uneasy personally with YEARS of ABX . Especially reading posts here of people who have spent a fortune , taken years of ABX and still "relapsing ". There are many factors and risks to consider , but there is NO garauntee that years of ABX will work . This disease is still very much a mystery .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Gael, according toEva Sapi , doxy and ivermectin is working for many doctors in Europe. Wish we had more info on that .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Like annxyzz, I by no means am judging or knocking a long-term abx strategy. I did that, for about 3.5 years! How I wish it made me well, of course.
I'm just trying to get information. If there are actually people out there where it took 3-4 years to see improvement and then 1-3 years after that to feel like they got "well." This would be useful information for me, for likely many of us.
Yes Gael, I am going to see one of Dr. K's ND's. I need someone to guide me and help me get figured out. So we'll see what the parasite issue reveals. Thanks again. TS
Posts: 566 | From West Coast | Registered: May 2008
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annxyzz
Frequent Contributor (1K+ posts)
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posted
I am not a medical professional - only a simpleton with a few observations. One thing that is pretty established is that glutathione and liver function are critical FOR ANY PATHOGEN. Glutathione deficiency goes with all illness and it is produced by the liver .
I just started a liver detox and renerator formula by NOW and am herxing like my first day of doxycycline years ago . I do believe toxins and parasites are not a fluff issue . I also had the same response with ivermectin for a while . Intense reaction. Even if abx do not work , there are things you can do to help your body with infection like a metal detox, chaga mushrooms, and intiinfectives that target a variety of pathogens like GSE or oil of oregano , or andrographis, artemesia annua. Everything is experimental because the underlying cause is unclear . I also think that the MTHFR gene may prove to be an issue with lyme CFIDS since so many of us have it , and once agin that affects body's ability to detox .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
If you go to "General Support", click on the thread "I made it!".
It took this person seven years of antibiotic therapy, but they finally got well and have been off antibiotics for four years.
Hope this helps.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
I know that people do get better on antibiotics, but if you are looking for other options...
My son, his step mom, and her two year old twins are all being treated by photon treatment. (based on the same theory as the bionic 880). My son has gone from bed ridden feeling awful everyday to about 70% better, walking again and feeling reasonably well in three months. If you want more info feel free to pm me.
The only book I have found with info on photon treatment is Connie Strasheim's "Insights..." everything else is in German(it's a German technology).
It may be too alternative for you and your friend, but I had to mention it as I can only imagine what your friend is going through with all her sick kids.
Take care!
Posts: 372 | From british columbia | Registered: Feb 2012
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I wish I never went off abxs. I've declined rapidly in last 2 years since stopping.
If abxs aren't working for you... maybe you need to find the right combo (attack surfaced bug) or consider diet, metals, detox, etc.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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annxyzz
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posted
There is a man here who took ABX for years and always relapsed . Then he went to rife therapy because the best health care money could buy was not working . The few people I know with long term lyme have not improved on ABX . I am speaking from a personal and limited experience and not discouraging anyone to choose my ideas . But the risk of kidney damage , liver damage and and antibiotic resistance if unnerving . I would risk it if I knew personally anyone with long term lyme who got well with ABX . I took them 3 1/2 years , and while I am pain free they did nothing else but cause kidney / bladder problems for me. Just my experience , and I am only a peon who reads and searches.
I have read so many posts of "relapsing again after .....years of ....." We have to ask ourselves if we are throwing an agent at the source of our infection that does not fit the pathogen.
I personally had ( only for myself ) a gut feeling that they would not solve my problem if I did them for years , so switched to antiinfectives from plants and rife . I do not know the answer , but I personally am not confident they help UNLESS you get DXed within 2-3 years, because it has not worked for people I know and have communicated with .
I hope others have BETTER luck!!
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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glm1111
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posted
Perhaps a COMBO of abx, antiparasitics, and antifungals are needed. Parasites are protecting the bacteria, and allowing the candida to survive as well, so when you get rid of the parasites, it will be easier to attack the other infections.
Honestly, I am for whatever works. Just want to see everyone get well.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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quote:Originally posted by annxyzz: There is a man here who took ABX for years and always relapsed . Then he went to rife therapy because the best health care money could buy was not working . The few people I know with long term lyme have not improved on ABX . I am speaking from a personal and limited experience and not discouraging anyone to choose my ideas . But the risk of kidney damage , liver damage and and antibiotic resistance if unnerving . I would risk it if I knew personally anyone with long term lyme who got well with ABX . I took them 3 1/2 years , and while I am pain free they did nothing else but cause kidney / bladder problems for me. Just my experience , and I am only a peon who reads and searches.
I have read so many posts of "relapsing again after .....years of ....." We have to ask ourselves if we are throwing an agent at the source of our infection that does not fit the pathogen.
I personally had ( only for myself ) a gut feeling that they would not solve my problem if I did them for years , so switched to antiinfectives from plants and rife . I do not know the answer , but I personally am not confident they help UNLESS you get DXed within 2-3 years, because it has not worked for people I know and have communicated with .
I hope others have BETTER luck!!
I kind of feel the same way. Antibiotics have helped me and have helped others, but there is definitely an overprescribing problem with this disease.
When I first started treatment I immediately herxed and subsequently improved, but my doctor insisted I stayed on the antibiotics long after I plateaued.
Fortunately there was no damage done but those antibiotics had run their course about 4 months before I stopped taking them.
I've found that for me, and this may not apply to everyone, that if something is not working, it's not working, and there is no reason to stay on something for an extended period with no results. Having said that, I may just be a fast responder.
Good luck everyone Posts: 169 | From The Poconos | Registered: Jun 2011
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
did 5 yrs oral antimicrobials then 4 month IV tigecyl...been off lyme/bart/babs treatment for 3 yrs. No tbi symptoms - knock on wood.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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annxyzz
Frequent Contributor (1K+ posts)
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posted
DMC - great to hear it worked for you ! Or anybody !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
I just got my lyme dot blot assay back (supposedly difficult to be positive on) and after four years of very aggressive abx, I am positive with a current infection. Thus, my looking at photon treatment. I definitely think they helped reduce the load and a ton with my coinfections but to get the Lyme, my doc - Dr. H swears that as long as there are drugs in the body, lyme knows and hides. Sure has proved true for me.
I think you have to NEVER give up... and you have to take the road that most makes sense to you... Dr. H was a wonderful choice for me and I owe him my life to have me at this place.
I am off all drugs in prep for my treatment in June and I am doing much better than I would have expected. Hang in there...
Posts: 859 | From Southeast | Registered: Mar 2011
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I think you are on the verge of some positive changes. All the abx in the world will not help with metals, mold, parasites, detox, deficiencies, etc. etc. etc. etc. From all that I've seen throughout many many years, there are not many people who can go off abx without eventually crashing. Dr. H says this himself. That tells me that something else needs to be addressed. I think parasites have been long over-looked. Thank God Dr. K has put it under a spotlight. I think it's because of his research and teachings that a lot of LLMDs are now learning the importance of it. He is the reason that it's now become a well-known issue. However, many docs still are not sure HOW to treat. You will be in good hands in Seattle.
I think it is so important to rebuild/repair the gut. And, of PARAMOUNT importance, to treat parasites. They tend to address that very early on out in Seattle.
I just started paarasite 6 days ago and have seen huge (neuro) improvements. I am feeling very encouraged.
Wishing you the best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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Actually it may be a very positive sign that you finally have a positive lyme test.
One very knowledgeable person told hubby long ago that until he started producing antibodies to lyme he would never get well. So far his Western Blots are still totally negative -- no positive or indicative bands at all. But he has actually had some positive antibody tests in the last couple of years for babesia and ehrlichia and anaplasma and rocky mountain spotted fever and typhus so we hope those are all good signs that he is finally making progress.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
For me, my antibiotics worked right away, and continued to work for 5 years, then stopped working. I was under the impression that treatment protocols shift as we need to change them in order to fight the illness.
Posts: 13116 | From San Francisco | Registered: May 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Adding antiparasitics to the abx could make a big difference. The combo of doxy and Ivermectin seems to be helping quite a few people.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Hi Bea you are so encouraging. Well, I don't want to get too hopeful here but I have been of abxs (everything) weaning -bicillin etc. (about five drugs) and it has been total since Monday and I am feeling better than I have in a long time.
Bea, your husband is so lucky to have you as his partner. You both are always in my prayers. I am thrilled he has begun to build antibodies to some tough critters to fight. That is encouraging.
I really do think it is a matter of not giving up and willing to try to address all pieces of this immense puzzle. Gael you are so helpful too to so many... I just read a post by Catina and it made me cry as I was there. I Pmd her and told her to get into Dr. H's hands. Thank you all for your wonderful support here. You have been a light on a dark night...
Ticksuck... I am sorry for what you are going through. I have learned this is a marathon not a race... and we are all here for you...
Ticksuck, hang in there. You have a wonderful resource here... these folks got me through... and continue to get me through. Blessings
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Yes, I can't thank you all enough for your information and support. I am blessed to have a supportive husband and family. However, no one can really relate to this illness unless they're living it themselves. So, thanks for your understanding, it really is priceless.
To those who have seen results on abx, or whatever methods, I am so happy for you. I do believe it is a matter of trial and error. As someone above mentioned, for me, my gut is telling me that abx will not get me there, I need to look at other avenues.
By no means am I opposed to abx in the future if I have a trusted to doc who thinks I'm at a point they might be more useful. It just seems, for me, I am at a cross-roads where other things should be looked at first...time will tell. And, I won't give up.
Thanks again...you guys rock. TS
Posts: 566 | From West Coast | Registered: May 2008
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