posted
I have been putting off asking this because I am afraid of the answer, but I don't know what to do next. Have any of you been in treatment for this long and still presenting new or worsening symptoms? Anyone gotten better after being treated this long or longer?
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
I have been treated on and off since 01 been great a couple of times but believe wife and I have been passing it back and forth.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
I HAVE!!! I've had prehaps over 3 years of treatment and am now around 90% better. And, believe me that figure is up from what I thought a couple of years ago that I would actually die from this disease.
Hang in there, prehaps you are just around the corner from being a whole lot better. One never knows with this disease.
It's hard to compare actually. Like apples and oranges.
Some folks get remission right away; some do not.
Many things depend on ones success in treating this disease....how long one has had LD, prior treatment, involvement of ones organs or not.
Also, getting better depends on the treatment by your LLMD...many LLMD's do different things for the patient to get better. Sort of like different roads leading to the same place.
The roads traveled are different (treatments), but, the destination is the same (wellness).
Again, hang in there and you may start to see a change for the better real soon.
I don't know all the things you've tried so far. I was treated for over 2 years for Lyme and had little or no improvement.
I then was treated for babesia and have improved a lot. I'd say that I'm 80% at this point. I have been up to 100% but I think my bartonella is dragging me back down.
The cold winter always takes a toll on me as well.
If you're not getting better and you're complying with your doc's recommendations, suspect coinfections or try another treatment.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Yes I did 3 years of abx and continued to go downhill. When I hit rock bottom, I started thinking outside the box and now I do alternative things. Rife, naturopath, muscle testing doc. Life can get better when you are doing things that are helpful to YOUR body. There maybe be things you are currently doing which may be harmful and doing more damage than good.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Did the woman who told you about lyme post on lymenet? can we read her past posts?
I am almost a year into treatment with no improvement and an MS dx as well as LD and babesia. Thanks.
Posts: 830 | From Colorado | Registered: Mar 2005
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posted
4 years of orals with little or no improvement,now on my 3rd month of IV and still waiting to turn the corner,its scary.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
For those not improving, what treatments are you implementing? Did you get tested for co-infections? Are you addressing heavy metals such as mercury? There are so many reasons that someone may not improve. Sadly, treatment with conventional ABX alone may be one of the major ones.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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I understand your worries. I was infected in 1996, diagnosed with MS, etc. in 2003 and started treatment for lyme aggressively in early 2004. Here I am almost 2 years later and ~70% better on most days, sometimes even close to 90%.
BUT, I still have flares and I still have crazy new symptoms that come with the flares and at those times, I feel as though I am back to square one. I have consistently been serologically positive for lyme, bartonella and babesia - I am "lucky" in that way I suppose.
What has worked for me? Aggressive combos of antibiotics (I have been blessed with the GI tract of steel) including IV, IM and orals. Combine this with acupuncture, a strict diet (not a low-carb diet but a special autoimmune diet), massage, gentle exercise...
Treatment is definately a full-body approach. A few months ago I felt "stuck" in my treatment. I began to pursue other avenues on the alternative side of things: food, non-seasonal and seasonal allergy testing, heavy metal testing, adrenal exhaustion testing, leaky gut testing and a whole bunch of other similar type tests looking for allergies, parasites, vitamin and mineral imbalances, etc.
My PCP wanted to make sure that there was nothing else stimulating my immune system or causing me not to feel well. She figures that she will let my LLMD do his thing but that she should work on strengthening my body so that it can use its own defenses at some point.
Guess what? There was other things going on and I only have about 1/4 of the results back so far. I have some very strong allergies and since I began treatment I feel a whole lot better!
I refuse to pull the lyme card for everything that is wrong with me - I think that I was hindering my progress by not exploring and treating other ailments. Allergies can make you feel crummy. Imbalances can make you feel crummy. You get my point.
I am excited to address heavy metals next thanks in large part to Gigi's inspiring posts. Abx will never be the silver bullet unfortunately.
Also, sadly, I have started to accept, with the help of a therapist and my LLMD, that I may never be the 100% well that I imagine in my mind. I will probably bear this burden in some respect forever and I will have to live a lifestyle that will keep it in remission. I dream that I will be 100% well at one point but I keep a grip on reality that my goal should probably be to be as good as I can be.
Good luck. People DO get well and live "normal" lives. I think that it is just a matter of finding the right combination of treatments and attacking the beast from all angles.
Posts: 98 | From MA | Registered: Dec 2005
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JimBoB
Unregistered
posted
I have the tendency to agree with Scott on this one.
IF I knew almost 6 years ago, what I know NOW, I would PROBABLY be cured a long time ago. The WAITING GAME is what did me in, along with the abx ONLY of Cipro for only 24 days.
While it worked miracles at the time; they only lasted about 8 months. And since he STILL continues to insist that we are CURED after 21 days of antibiotic treatment, there is not much hope for me and anyone else around here to get good treatment.
I respond quickly to whatever regimen I am on, but it appears it is not lasting. So NOW I am on a long term regimen of mostly herbs, but also abx as part of it, to kill as many chetes as possible to help the herbs to do their job as quickly as possible.
BUT after doing more research lately, I am going to start working on coinfections too, even IF I don't have them, just in case, as like I just read again, and refreshed my memory, that IF we get rid of Babesia, it will make the LD protocol work better and faster, so will hit that as soon as my babs herbs get here, for my NEXT protocol, in a little over a week. THEN back to this LD protocol.
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Addressing Co-infections and Metals has made the most difference for me. Finding specific LLMD and MDs who are adept at these areas has been essential. While the progress comes in baby steps, I'll take progress over inertia.
Switching LLMDs was very significant for me. Finding a LLMD who treats coinfections with specific abx and anti-malarials and diagnoses both clinically and by serology has also been key.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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I just remembered another thing that REALLY helped to make me feel better.
Detox.
I was tested for the gene that specifies your ablity to relase toxins through the digestive system. I'm genetically incapable of doing this along with 25% of the population. You can find out more about this by going to:
I'm not trying to sell anything by giving you that link. I don't even own the book that they are selling.
I started taking cholestyramine and using air purifiers at my workplace and at home. My LLMD says I work in a sick building and that I should get a new job but I'm just not up for that yet.
This is getting longer than I anticipated but toxins are a big part of this disease and if you just keep killing chetes and not releasing the toxins, you're going to end up feeling REALLY BAD. I know.
So, I hope this helps some.
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
Thank you for your responses. I look for every little sliver of success. We see two LLMDs, both very good. My daughter has been treated for co-infections, has been tested for and has the genetic type making her vulnerable to mold toxins, has no MSH therefore can't eliminate. Was treated successfully with cholestyramine. When gastric problems seemed to be the obstacle, our ever-searching llmd started her on a detox and acid balancing regimen, which did greatly improve her system. Starting ketek on an improved stomach brought very frightening NEW symptoms - jerking of head, often several times in a row, and an awful fluttering sensation in chest, back and extremities that is quieted only by oxycodone.
This is what scares me. I always thought that, at least we were halting the progress of this disease, even if we weren't curing it. That doesn't seem to be the case. Her doctors consider her a very tough case.
I am trying to find the balance between abx and homeopathic remedies, since both seem to have worked to some degree at certain stages. I guess my big questions are do you reach a point where abx no longer work and homeopathics are more effective; do you think it is possible that there is a course to this disease, with a specific pattern, and that it has to run that course? And the really scary concern. Somewhere I read that it is the genetic coding of the particular tick that we need to be concerned with. We know that ticks can carry different bacterium. What about their genetic coding?
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
JimBob,
I think you can address LD and Babesia together, but it depends on what your system can handle. You have to listen to your body and work with a medical professional.
I am using Mepron for Babesia along with Biaxin and Doxy for Lyme. So, many LLMDs will treat for both and you could extend this same approach to herbal and other therapies.
Just don't go too fast and listen to how your body reacts as you work your way through the treatments - there may be times when you have to go slower.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I took Cholestyramine as well and have decided that Chrlorella is a better option. I am starting that now and will see but I feel that the natural option makes more sense, has fewer side effects, and can be implemented longer-term.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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JimBoB
Unregistered
posted
Scott: Since Buhner Red Root and Artemisinin for the Babesia, and I have seen that Doxycycline is used for BOTH LD and Babesia, I thought I would go with that. I was thinking of stopping the Cats Claw and Devils Claw while taking the Red Root and Art., for the time I need to address Babesia.
Does that sound right to you and/or Gigi?
My stomach is really kind of bad right now. In a turmoil all day, almost, everyday. IT needs a rest, I think. At least IF I am addressing SOMETHING, I will feel like I am doing something. WHich will make me feel better overall.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Take under account that many unknown factors interfere with your treatment.
For example, you may develop small diarhea on abx and because of that you blood level of abx may be too low to fight infection. Or your abx maybe malabsorbed because of some small allergy. Again, as a result your drug blood level may be too low.
To some abx your bug may be resistant.
Any of these occurences will will extent the time of your treatment.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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liz28
Unregistered
posted
It's a little early to say any of this is set in stone, but I was disabled with Lyme, bartonella, and babesia for four years before there was a change. Now I still have severe babesia which is getting much better with proper treatment, and have not had Lyme or bartonella symptoms for a while. I jog three miles every other day, and just took my first full-time job in six years.
I agree with everyone who expressed the opinion that co-infections cause chronic Lyme.
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