posted
I will preface this post by not meaning to discourage anyone from seeking treatment, nor to offend anyone...but...
I have been ill for five years and "in treatment" for 4½ of those five years. The first 6 months prior to starting treatment and attempting to find out what was wrong with me, I was on death’s door…seizures, coding in the ER, spiking blood pressure and heart rate, all bad stuff.
When I started treatment, however, six months into it, the REALLY bad stuff (the seizures, coding in the ER, spiking blood pressure and heart rate), seemed to have gone away…ON IT’S OWN.
I was just left with MAJOR brain fog, generally feeling crappy, short and long term memory loss, abnormal brain scans, that kind of stuff.
In my 4½ years of treatment, I am NO worse for the wear…I am no better and no worse. I was averaging about 40-50% functionality then and the same now.
But, I am much poorer! I went to three different LLMDs…kind of working my way up the food chain, and am currently with the heavy hitter, Dr. H, in New York.
Over the years, I did HBOT, acupuncture, numerous supplements, tons of oral antibiotics, months of bicillin shots and two PICC lines (one for 7 months and the other for 9 months). I am, probably, $100,000 poorer, not even counting whatever amounts my insurance picked up.
I was hoping and praying that, one day, I would be posting in the Success Stories. But, I don’t think that that is ever going to happen.
I don’t mean to discourage anyone because hope is something that a lot of folks cling to, and that some folks do, in fact, get better, but, the reality is, is that you may never get better! Hope is great, but false hope, well, not so much!
Chronic lyme is real and, while everyone is hoping and striving with all that they have in them to see wellness, know that it may never come.
Had I known then what I know now…i.e. that after 4½ YEARS of pouring money down the lyme toilet, would I have embarked down this long road, with no return for my investment what-so-ever? NO WAY!
Many folks have asked on here, where all of the folks are that really do get better…the answer was always that they are out living their lives now that they are better.
While that may very well be the case for some folks, I don’t think that that is the majority. I think that most folks on lymenet, do not get better and that’s why there are so many folks on here.
The better ones, the lucky ones, post their success stories…but, as all can see, it’s less than 170 people, while yet thousands are on this site. Sad, but true.
Again, not to discourage anyone from doing anything and taking all measures within their power to attempt to achieve good health, just know, though, that the result may not always be there!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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I no longer hold out hope for any kind of miracle, and only wish to minimize the misery as much as possible. After years of traditional therapy, and tons of $$, I have found some small relief using Rife, but it seems that for every symptom cluster that fades a new one comes to replace it. Oh joy.
I think, also, that most LLMDs greatly overestimate the success rate. While I know they provide a huge service to many, TBI's are so poorly understood that the reality is trx is a shot in the dark (at best).
All I know is I'm still sick and the money is not coming back.
Thank you for posting this.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I have said this before, but here it is again.
People do get better. And they do go away. That figure of thousands on the website is a cumulative total, not current total. Look at old threads when they come up again and see all the names of people that are no longer on the forum.
But for some of us, success has to be redefined as continuing to live and be functional vs. in bed with a care giver looking after us. That is what my success looks like now. Unless some miracle occurs, and the officials are not even looking for better treatment for chronic cases, then that is all I am going to get. Painful, but true.
It is puzzling that you said after a certain amount of treatment a number of symptoms went away on their own. Did you not consider that treatment took them away and is keeping them away? As for the other symptoms that are unchanged, we don't really know what all the tick gave us besides lyme, and lacking that knowledge, there doesn't seem to be any way to treat the whole shebang.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Very sorry to hear. Maybe you are barking up the wrong tree or you have not found the one thing that will work for YOU. We are all different.
Here's hoping you find the solution!
PS .. Sometimes you have to change course.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I am here to say I am better and have had my life back many many years now. Am I cured? No, I would never say that. But I do live in peaceful coexistence.
Was antibiotic treatment the magic fix? Not by a long shot. But it was the first key in unlocking the many doors that make up chronic lyme.
The treatment route is so different for so many, but I will say that you need to address not just the right infections, but the other messes the bacteria (and the treatments themselves) cause.
Here's to many more posts to support my claim
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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The treatment route is so different for so many, but I will say that you need to address not just the right infections, but the other messes the bacteria (and the treatments themselves) cause.
Here's to many more posts to support my claim
-
Totally agree with that!
Moving to General Support .. waiting there for more replies!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Poppy - Your statement ("It is puzzling that you said after a certain amount of treatment a number of symptoms went away on their own. Did you not consider that treatment took them away and is keeping them away?")...well, I wish that treatment actually took them away. But, what I meant was that they went away totally ON THEIR OWN, before I even started ANY kind of treatment.
And, personally, I think that folks move on, not because most are better, but because they, like me, are in a holding pattern...no better, no worse.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Thanks for posting honestly. I think there are so many factors to the issue of whether we get well or not. Some get well, some improve, some go up and down, and some struggle with longterm symptoms.
Factors like the extent of the illnesses we have - one strain of Lyme or multiple, the severity of the strain or strains, whether we have other illnesses too, whether we can detox easily or not, the toxic load in our body (heavy metals, mold, candida, exposure to pesticides and other chemicals), and more.
I would hope that the doctor can do as much as possible to test us, as in our blood test results and boost what is weak, like adrenals, thyroid, immune system, etc.
An approach would be to check in with all systems of the body, to blood test them, supplement them.
And even then, some people click with a particular treatment, like the recent TV program in San Francisco on abc7 TV where the young man got his health back after stem cell injections in India, in comparison to his sister who didn't and they said she has allergies and doesn't detox well.
Posts: 13116 | From San Francisco | Registered: May 2006
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momindeep
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posted
My daughter got better...she was sick for a long time...ten years in she started to slowly get better...four years out from that and she is doing really well...
Still see her docs tho...not sure if she and I will ever be comfortable not seeing her docs although he said in his opinion she could cut herself loose...but he totally understands our hesitation.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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hiker53
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Member # 6046
posted
triathletelymie,
I am sorry you don't feel close to being well. For some it can be a long journey.
However, please do not give up hope. I have been on this journey a long time, too, and while I am not where I want to be I am a lot better.
I find I have so many blessings in my life and I will not allow Lyme to take those away.
Hang in there.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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RZR
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Member # 20953
posted
I a beginning to believe the same. After 5 years of trying everything....3-1/2 years abx, 18 months Cowden, 2-1/2 years rife, months of Byron White, etc.
For the past 4 years, my worse issue is my digestive tract. It will flare up by starting pain in the GB area, then undigested food, burning, absolutely miserable. I am in that flare now and all tests are normal.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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For the past 4 years, my worse issue is my digestive tract. It will flare up by starting pain in the GB area, then undigested food, burning, absolutely miserable. I am in that flare now and all tests are normal.
- Now it is time to work on your gut. It has been under assault and it must be fixed or more woes will follow.
(trust me, I know)
Consider the Body Ecology Diet or the Paleo Diet to fix things.
What does Dr. H say, or are you plateauing there also?
The treatment protocols keep changing as more information is learned and it is moving fast. What we knew 3 years ago about Rife, PEMF, Ozone, ABX and other primary and complementary approaches has changed significantly by feedback from many really smart patients and several adventurous doctors.
I was bitten 2001 and did not start treatment 2010, when I discovered both my son and I had Lyme symptoms. Recently I have become pre-diabetic because of this awful disease. Went Paleo a month ago to see if that will help diabetic symptoms. My energy level that was mildly improving has regressed. I am on my second round of ABX with my second LLMD with 18 month herbal protocol in between.
I get really upset thinking about it partly because I have always been an optimist, and now I really have to work at staying that way. My good friend that I wrote may songs with, committed suicide as a result of his Lyme. We were both bitten in the same area, he was infected 5 or 6 years ahead of me. For him apparently it was too late when he was finally diagnosed with Lyme.
Dr. Terry Wahl's (The Wahl Protocol)new book may hold some keys to dealing with chronic infections. She does not treat infectious disease or is part of ILADS. She was very traditional in her protocols until they just stopped working.
So I thoroughly understand your point of view (we are all there or been there) but if I start getting lost in this disease, how can I help my sons. My other son was bitten in Arkansas on a camping trip, we recognized the symptoms 6 months later.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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Catgirl
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posted
I agree with Lymetoo, sometimes you have to change course. You might want to try parasite treatment. Most docs miss them.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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beaches
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Member # 38251
posted
Have you been tested for immune deficiencies?
IgG, IgA, IgM and IgG subclasses?
If those levels are low, you could have an immune system deficiency which will make it impossible to recover from Lyme/cos unless the deficiencies are addressed.
Tx for immune deficiencies is IVIG. Get yourself tested/evaluated.
Posts: 1885 | From here | Registered: Jul 2012
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posted
I think there are still many LLMD's who undertreat the coinfections of bartonella and babesia. Until those infections were under control hubby made little improvement.
I think supplements are almost equally as important as killing meds and herbs.
Probably the one thing I would have done differently with hubby was to try harder to support his immune system with adaptogenic herbs. We used them from time to time, but with limited dollars did not continuously address that issue.
Unfortunately since Dr H is in New York he is limited in his testing abilities. He cannot use either Galaxy Lab for bart or Fry Lab for babs or FL1953. So the tests he is using for those infections may not be sufficient to adequately diagnose bart or babs in my opinion.
One other mistake we made was staying with docs who were not really helping for too long. If you do not see improvement within a year with any doc I would at least get a 2nd opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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How aggressively have you treated babs? I am wondering if you have a low grade chronic babesia infection that was initially responsible for the seizures, high blood pressure etc and you are left with lingering brain effects from that infection.
I have been confused for a long time about the immune system response to lyme versus babs, and the most recent research I have read says that one needs a Th1 response and the other a Th2 response to control the infections.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
quote:Originally posted by beaches: Have you been tested for immune deficiencies?
IgG, IgA, IgM and IgG subclasses?
but there are other diseases that can cause immune disfunction. my dd was dx with not lyme or any other tick disease, but she was dx with persistent coxsackie and strep and a lymph problem.
all those can cause immune problems too. it's not just lyme and tick diseases that make us all sick. there are so many other things that can do it too.
and of course parasites. my ll dr wont' even treat lyme, until parasites are treated.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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posted
hang in there tri
It is hard, I know it.
on my bad days I try and distract myself with things that have nothing to do with my daily routine. like creating art or cleaning feverishly.
and I try and put all the tick stuff out of my head for the time it takes to come back to my animal instinct to survive at all costs.
today I am having a terrible day. terible time with all this. but on those good days it can be so good and I try and remember them.
I will be hoping and praying for you and for us all.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Matt - Well, kind of frustrating with Dr. H. He basically said at my last appointment with him "I'm not quitting on you, I'm not a quitter, but..." That certainly didn't give me any glimmer of hope, coming from reputedly the best lyme doctor on the planet!
Bea - I have treated aggressively all three of the beasts - lyme, bart and babs, as I tested positive for all of them. I never really thought that I had much babs, though, as I didn't really have that range of symptoms. I have always thought, though, that bartonella was more of my problem.
In any event, it sucks! And, Matt, I, too, have always been the eternal optimist, always helping others and ALWAYS seeing the glass as half full, but this is tough, even for me. I'm starting to lose hope of ever having my life back. Not a good place to be.
Thanks, everyone, for all of your thoughts. Much appreciated!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Matt, I hear you, and there are other Lyme-treating doctors besides Dr H and some with different approaches.
Posts: 13116 | From San Francisco | Registered: May 2006
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Lymedin2010
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Member # 34322
posted
I AGREE TOO.
My body has fought Lyme without me knowing it for years. When taking the best & most ABX, I went from assuming & guessing it must be Lyme to developing all the Lyme symptoms.
I see many people around my block who got treatment early & who walk around with symptoms. They don't even know it is Lyme. One guy just got knee surgery & poor man looks so sickly & tired and exhausted. Nothing like the energetic & hard working person he was before.
I see the gradual progression with my niece, daughter & even in my wife who is in denial. Both my niece & daughter were treated for about a year by the best kiddie doc.
Based just on my observation, I conclude that the body is very good at holding off the infection for as long as possible for most people. I am the only idiot out of 19 people on my block who got continued treatment because I educated myself & "knew" so much. What I did was instead was to take a bullet in this never ending battle.
The most important thing that I now recognize in the battle for Lyme is the importance of the immune system. If I could go back, I would have only taken 3-4 weeks of ABX & focused the rest on exercise, diet & detox.
Posts: 2087 | From NY | Registered: Oct 2011
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poppy
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posted
Well, that is one way of looking at it, and your choice of course. But there are many people who did take only 3 -4 weeks of abx and they are very sick. Chronic cases now. Some dead. If exercise, diet and detox worked, none of us would be taking abx.
Posts: 2888 | From USA | Registered: Mar 2004
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steve1906
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posted
I agree with Lymedin2010, maybe I'll go into detail later, already done that a number of times in the past.
But for now, I think Lymedin2010 is correct.
Immune System is the key![b]
Antibiotics can’t tell the difference, and kills good bacterial, as well as some bad.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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momindeep
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posted
To add to Steve's observation...healthy gut is the key...hands down.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Amen .. a healthy gut is SO vital to our immune systems. I treated for four years and wish I had stopped at about 2 yrs. I think I would have been better off.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Lymedin2010
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Member # 34322
posted
2-3 years ago I would have been outspoken about taking ABX with only a few symptoms, but now I cannot do the same.
With all that I know & have tried I cannot get myself, my daughter or niece better, nor any other family member.
Yes to gut flora. Basically anything immune related, such as supplements, hot baths/sauna, good low carb/sugar diet, no breads/pasta, no fruits that harbor mold (such as strawberries), do not overwork, tame stress, leave drama/stress people behind...etc.
Posts: 2087 | From NY | Registered: Oct 2011
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Judie
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posted
"I think there are still many LLMD's who undertreat the coinfections of bartonella and babesia"
I agree with Bea and also other infections need to be considered.
Here's a thread I started on other things to consider:
desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
IME, w/ my LLMD, it is not just about making $$$$$$$$. He/they have given me my life back and have been supportive on many different levels during the last few years of my treatment. After 2 brain surgeries and months of heavy duty steroids, all while having multiple TBI's, I would not be here had I not pretty much drowned myself in abx.'s for a long period of time.
Now I can focus on all the other things which keep me in remission. I can now run and bike and swim - I'm a triathlete as well so I can relate on that level.
My healing was no way linear and I went through four LLMD's till I found the one that was the right fit for me. I will never be "cured" but have found a way to remission and relative health. It has been a 10 year endeavor.
Maybe Dr. H. is not the LLMD for you. Perhaps you need to get a fresh set of eyes to look at your case. Don't stop fighting...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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momindeep
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posted
I wonder how many people have improved or gotten better using mostly abx? That is a question that is lingering in my mind.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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momindeep
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Member # 7618
posted
It took three doctors with three different specialties...all working together in a lyme-literate clinic...pow wowing together to fit the pieces of the puzzle of my daughter's uniqueness, to put together a game plan that took three years to show tangible results.
Long sentence...sorry.
This, after about seven years of failures with various other doctors...not that some didn't really try.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Steve, ALL doctors have to make money. Doesn't matter WHAT they treat.
momindeep, I got well mostly on abx, but I paid very close attention to what I ate and took really good care of myself. I still do.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Steve, I agree with you. So many are leeches who are all about the bucks. We stayed with one of them waaay too long.
But there are SO many other docs who truly help people and are worth their weight in gold. I don't mind paying them!
All docs have to make a living. It's a matter of finding one who is in this field for the right reason -- dedicated to getting his/her patients on a path to wellness.
Posts: 1885 | From here | Registered: Jul 2012
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steve1906
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posted
Don’t get me wrong, I’m not downgrading all LLMD’s, I know some are trying their best to get people better.
The problem I see is, why some doctors keep people on antibiotics for years on in (2, 5, 10 years) and in some cases (20 years +), and they never improve or feel any better.
Like most of you here, I’ve done research for years on everything under the sun regarding these diseases.
I truly believe antibiotics stop working at a point in treatment. At that point, we are only doing more harm to our body’s, and we’ll continue to go down hill as long as we keep taking abx’s.
PLEASE, don’t change your treatment regimen based on my beliefs, I’m not a doctor, it’s just what I believe to be true.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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surprise
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Member # 34987
posted
Maybe I'm naive, but I have to believe the only reason people stay on antibiotics for chronic Lyme and co-infections over 2-3 years
is simply that they regress and get much worse off them. I don't know a lot of patients lyme stories, but Amy Tan's been on TV lately saying she remains on an antibiotic: needs it.
In Burrascano guides, it says a small percentage may need an antibiotic long term (like Doxy, Amoxicillin I'm guessing) so they can function.
Anyway, the whole 13 nails in the foot bit: Is it your gut? Did you really 100% give up gluten and sugar? Then some swear it's mold- Thyroid, heavy metals, parasites. Exercise? Getting rid of unhealthy relationships? Adrenals?
It can go on and on. It's up to the patient/ unwell person to decide how far they want to go, how much money they can spend. In this disease, it's best to educate yourself. And then sometimes, getting quiet and seek intuition on the next step.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Brussels
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Member # 13480
posted
I agree with Steve and Surprise: fix the immune system, fix your body, that is the ONLY hope for the most severe cases of lyme.
Had I not done that, I wouldn't be here. I wouldn't be lyme free.
I get bitten every year, and so does my daughter. She got her 3rd bite today, only this summer!
I got 2 or 3 bites, I even can't remember. I see ticks virtually every single day where I live, either on my cat or on my clothes or walking on my skin.
No way I can ONLY treat the bacteria!! Every new bite could make me sick. That happened many times in the past. If I am now 5 years lyme free, it is not because I treated bacteria only.
That is why I keep telling people, without energy tests, and a method to test and find problems and treatments, I don't think there is a way out for most of us.
The bacterial /pathogenic part is only a tiny part of the problem to be addressed.
Many here though can get better, in lymenet, up to 60 or 70%, if they treat seriously, no matter what treatment they choose. That is my impression after years following the threads.
People do go out and live their lives!!
The problem is the rest 30%. How to solve the remaining problems to reach, about 90-100%? That is the problem.
If your aim is to reach about 70%, probably trial and error can do it, it just takes money, time, patience, good doctors, good luck. But to reach 100% lyme free, I can't believe it's possible only by trial and error and blood exams....
Our bodies are too complex, our problems so varied (from teeth, cavitations, occlusions, meridian imbalance, allergies, mold, intolerances, parasitism, hormone problems, electrosmog, ....
.... zillions of infections, psycho blockades, mineral imbalance, organ problems, lymph problems, HPU or KPU, vaccine damage, heavy metals and so on), each could block healing.
How on earth can a practioner test all these problems and give proper treatment in a reasonable time that allows 100% healing? I don't see how without a good method and without energy testing. We don't have 200 years of life to get healed!
Any of the above cited problems can cause immune deficiency. Healing vaccine damage may take a lot of time. Heavy metal detox takes years. HPU, probably a life time, even with the right treatment. Parasites, another great deal of time. And so on.
I'm lyme free, lyme treatement free. I'm still though trying to treat my KPU, still trying to see how to eliminate toxins better, how to increase my body temperature, sometimes still fighting candida on and off.
I continue then to try to fix my immune system, so that I don't fall again with this horrible disease, no matter how many new tick bites I may get now and in the future. There is no other way out, if you live in endemic area like I do.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
From Brussels "fix the immune system, fix your body,"
Can you elaborate more on what you did to fix your immune system?
Posts: 116 | From Upstate NY | Registered: Apr 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If you don't want to take antibiotics and think any one of a thousand other things people have tried and not been cured by either are the right choice, do it. But don't tell everyone that is the true path. One person "cured" by HBOT or mHBOT or whatever is not proof that it will work for everyone. It is very tiresome to have people slam abx and then recommend buying some expensive machine that won't cure either. Your solution is not everyone's solution.
Abx did not stop working for me. They just aren't enough to cure. When I stop them, bad things happen. People have died when abx were withheld from them.
[ 08-14-2014, 03:10 PM: Message edited by: sixgoofykids ]
Posts: 2888 | From USA | Registered: Mar 2004
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steve1906
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Member # 16206
posted
poppy, everyone has their own opinions, as do you. No one here is telling anyone how to treat, that's their choice.
I doubt it very much if the mods will stop this type of conversation; we’re sharing our treatments choices.
I personally have never believed in long term abx's, that my choice.
posted
Triathlete. I am so sorry about your lack of progress. I think we came on board about the same time and having the bond of being an athlete in common.
I had a lot of what you were experiencing, minus the coding. definitely the heart issues, BP, etc. There is part of me that wonders if it is our athlete's adrenals that played a part in this.
I am doing much better but I have come to terms that I will most likely not be that kind of athlete again. I have recently started yoga, Pilates, NIA,, etc. and it has been good.
Please keep trying different things. I know that competitive person in you will. It doesn't have to be ABX but just test out different things. I am confident that one day you will find that "thing" that helps you turn the corner.
Posts: 478 | From Third Coast | Registered: Feb 2011
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Without reading all the other posts I wonder if you have looked beyond lyme as a reason for not improving. Could your continued symptoms be due to other issues t this point?
As my LLNP said to me to continue to go after lyme when it may no longer be the major player will just cause more problems in the long run.
Posts: 1748 | From United States | Registered: Dec 2011
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quote:Originally posted by Ellen101: Without reading all the other posts I wonder if you have looked beyond lyme as a reason for not improving. Could your continued symptoms be due to other issues t this point?
As my LLNP said to me to continue to go after lyme when it may no longer be the major player will just cause more problems in the long run.
- Amen
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Have you done the 23andme or MTHFR testing?
Posts: 2249 | From USA | Registered: Aug 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Back to Basics...
There is no known cure for Lyme disease. Never has been.
Everything we do is to help relieve symptoms and prevent worsening, if at all possible. And all we can do is throw what we believe might be beneficial at the disease(s), and hope for the best. Some will do well, others won't.
To expect someone to cure Lyme when there is no known cure is not realistic. They may be able to treat the disease and treat you to make you feel better, but they can not cure Lyme disease.
On the flip side...
By treating with what is available we are trying to prevent mild to severe chronic disability and/or death. How much is that worth to you?
For some, what they do and what they spend in dollars will work and they will feel better, for others it won't work. No one has the answers. It is all trial and error.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
On the brighter side...
We learn. We think. We educate others. For example...
IDiot Hopkins, that doesn't even believe there is such a thing as "chronic Lyme disease", just published this...
"Of the 1524 drugs in the FDA-approved drug library tested, 165 had higher activity against B. burgdorferi persisters than doxycycline and amoxicillin."
In other words, the basic meds we've been told by the IDSA/CDC/Hopkins will work, well they really didn't mean it. They made that up.
Truth is, there are 165 other drugs they don't want us to have at all, according to their own guidelines, that after 30 years they just showed would work better!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I am better about 80%. Treat parasite, worms,Babesia like organism. Detox, PEMF. Buhner. Probiotics, juice, infrared sauna.
Posts: 697 | From CA | Registered: Dec 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am still working on it.... feeling way better from my herbal treatments from Monastery of Herbs.
I eat pretty healthy most of the time. no wheat. no cow milk products.
I have had this (tick deseases) forever it seems, but I am still such a baby when it comes to knowing anything and that is mostly because now that I know what is wrong with me but I cannot read and retain much any more so it is a very slow process.
I am looking into 23andme possibly, and heavy metals have been suggested by one test result, and I am planning other testing for that soon.
after my herbal tx my lingering sx that bother me the *most* are (besides my brain stuff that may be the HM)joint pain, overall muscle weakness and fatigue, and "gastritis" that comes and goes.
I am right now agreeing with what tincup says above- no cure. so I am starting to work on my immune system and how to build that up.
I am not saying I know for sure there is no one that gets cured after having it forever, but that is what I am thinking about my own case for sure. to me, that would be a miracle.
for me- would I do things different from beginning? yes. rememebr when it was all over the news to say "no" to ABX? that they were being over prescribed? that was like 11 years ago when I had one very smart rheumatologist suggest I take abx just to see if it would help and I declined.
I found this when I read through all my med papers while applying for disability.
He tested me for lyme and the good ol girl Elisa was neg. and he wanted to try abx anyway and I said no.
boy , if I could do it all over I sure would.
and I wish I would have listened to all the healthy food experts I spoke to in my 20s about eating healthy, and to the dr that knew everything about what my body needed to get right, but I was stuck on searching for a dx and while nothing is wrong with that,
but if I had listened to her and kept on the rd. at least I would have been more healthy and had a better immune system all along.
I am not ready to give up, but I sure have come to the crossroads (for me). not sure where I will go, but I am sure it will never be boring.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
What is frustrating for me and others on this Board is that often the posts in the Success Stories are too vague regarding what worked...what didn't...supplement lists...what was the main thing that helped them turn the corner...
I wish more people who post their success stories would take the time to be more specific
Posts: 1155 | From Southeast | Registered: Oct 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's also of help to search the poster's recent history to see what all is going on with them since any success post. Sometimes, the follow-up should also be considered. Success is not always clear and can have caveats. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
quote:Originally posted by Bugg: What is frustrating for me and others on this Board is that often the posts in the Success Stories are too vague regarding what worked...what didn't...supplement lists...what was the main thing that helped them turn the corner...
I wish more people who post their success stories would take the time to be more specific
Bugg...
Some of us do try.
I posted regarding my success with mild hyperbaric on this thread (about 14 posts up), but it was deleted. (You can still read the reactive commentary...)
I have put many hours into posting specifics regarding my recovery, as have others who are doing this therapy. You can read more on this thread:
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Hi Tri -
I've been on oral abx for 7 years. The past 5 have been buggered by C.diff, so staying on comprehensive protocols has been rough. I have to stop abx when C.diff flares and get that under control.
But I am still making progress. Babesia has been a bear, and I have the (somewhat less virulent) microti strain.
I am always treating Babesia. If I come off meds, I relapse. And I've become resistant to some of the meds.
I'm currently on Mepron, Zith, Rifampin, Tindamax. Full doses. Daily. And Cholestyramine for detox.
I'm actually doing well on this program and many symptoms are improving.
But my doc's office is now offering Dr. J style IV treatment and I'm going to do it.
I exercise and eat a clean diet. I work very little and manage my stress the best I can. I sauna and skin brush.
And I still need abx. Lots of them.
I remember you saying you had Babesia duncani. It can take many, many years of aggressive treatment to get that under control.
New tick-borne viruses are showing up in the Midwest. I think ticks are carrying more than ever.
All of these pathogens swap DNA and find ways to resist treatment. I know this paints a grim picture, but it also shows why we need years of comprehensive treatment. (I'm not even mentioning the cytokine cascades and organ dysfunction.)
My heart goes out to you. I know you've done lots of treatment. I hope you can keep going, even in the face of uncertainty.
What I'm finding is that my pathogens respond best to drugs they haven't seen before. I've been rotating the same ones for a long time. I think new meds by IV will pack a wallop, but I'm trying not to have high expectations.
People are still getting well. Abx, herbs, Rife, hyperbaric, detox, diet, exercise, traveling to Germany...we all try different things. Most of us find a way to at least manage our illness and many continue to make gains.
I am ALWAYS learning on Lymenet. And reading and posting here keep me motivated, even on my most awful days.
I hope you'll stick around. There are always options.
Much love, BoxerMom
P.S. If I were you, I would blast Babesia with both barrels.
-------------------- no bite, fatigue for 30 yrs diag Feb '13 (maybe) homebound w/ fatigue Dec '11 Posts: 14 | From W Mass | Registered: Mar 2015
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Clostridium difficile, an intestinal infection. The hallmark symptom is watery diarrhea. If it gets out of control, you can end up with an inflamed colon that's actually called Megacolon. It can be dangerous if left untreated.
It's often picked up in hospitals and nursing homes. It's also called Antibiotic Associated Diarrhea. When your healthy gut flora is diminished, the C.diff can flourish.
Oral meds are Flagyl or Tindamax. IV meds are Flagyl or Vancomycin. Cholestyramine will bind and neutralize the C.diff toxin that causes the diarrhea.
The best defense is a healthy gut, so I take lots of probiotics. Sacchromyces boulardi is good, too.
posted
Be sure to protect yourself from c.diff, catwoman!
Take probiotics, s.boulardii and watch your diet while on antibiotics... No sugar or white foods!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: Clostridium difficile
Proton Pump Inhibitors (prevacid, Prilosec, nexium, and others of this Rx class) should also be avoided as they can destroy good gut bacteria and their use can set the stage for &/or make c.diff all the more dangerous. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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