First, I'm not sure what I believe anymore. I used to believe that we all had this infection that we could treat with long term abx. I used to believe that LLMDS were the unsung heroes we needed to get better. Now, not so much. I still think LLMDS are heroes. I mean they believe in us, and listen to us and TRY to help us. I just don't think they have the answers yet. I'm somewhere in the middle of this IDSA VS Ilads thing.
You know how they say when you are in the middle of something you can't see the full picture. For example when you are in a bad relationship, you need to get your friend's viewpoint right? Because you know you are biased, you want a certain outcome. Well, doing what I do online, gives me an outside view of what's going on in the Lyme world. And I don't like what I see.
I see a lot of people spending lots of money on treatments that are not helping. And I'm not talking one treatment, I'm talking all of them. Whether it's antibiotics, picc lines, rife machines, zyto or ozone. I know a lot of people doing desperate things, and treatments that only desperate people would do. And spending lots of money doing them. The usual outcome: not much. Either you stay the same or get worse. So why do we keep doing these things?
1. Desperation. We want to get better.
3. The "herx" theory. Until we can really tell under a microscope, and drs are actually deploying it, I am not buying it. I know we herx, and I know there is such a thing. But honestly folks, let's face it, how many of these reactions or not true herxes and are just "flares," bad reactions to meds, or simply just over toxicity to meds.
Read this written by my friend PJ Langhoff. I think she describes this subject well.
My wish for us all, is that there be more research. We need to figure out exactly what this is that we have, and we need accurate tests. How can we continue fighting different strains and species and infections if we don't even know for sure what we have? And we need research on the damage that "Lyme and friends" has done to us. Don't you all feel like you have circulation problems? I do. Is this damage or infection. We need to look more into it. I believe we have both, damage and infection.
So anyways, this is not to take away hope. This is not to make people feel stupid, this is not to say that noone has gotten better. This is just a little of my viewpoint on the reality I see in this "Lyme" situation.
And again, I will repeat, I know some people get better. Just not enough.
How long have you been in Lyme treatment?
Has Treatment Helped You?
Not a hundred percent but a hell of lot better than before Night and Day difference and I'll take just hope it stays this way...
ReplyDeleteJust to be clear what i said before i am not a 100 percent but after 2 and half years of oral abx combo, i switched over to some natural stuff like olive leaf extract and some semento ( cats claw).. I still detox and take E. baths etc.. i am in some kind of remission but not sure if it will stay this way or get better in time.. I believe what Dr. B says that some patients might have residual damage from Lyme and treatments, he is the most in touch and correct medical doctor in my opinion since he has his own battle with Lyme..
ReplyDeleteGary Glaser
ReplyDeleteLisa, I agree with your assessment pretty much 100%. I just took a 3-4 week vacation from my meds. I was remembering that before I was diagnosed I would have brief periods of time when I felt pretty good. Back then I would interpret that as "getting better." I could have weeks on end where I was so sick I couldnt stay awake - then out of nowhere most of my symptoms vanished. I actually had a 6 week stretch of feeling good the fall before I was diagnosed. When I first started meds after 3 months I had about 5-6 weeks feeling very good. So that time I interpreted it that the meds were working and I would continue on that trajectory. Only I didnt. I have been up and down just like before. During my vacation I initially felt good, then I had to take Zyvox for MRSA which has very bad side effects. It seemed like what I would say is a herx BUT Zyvox doesnt mess with the Lyme infections - so I had to interpret it as a side effect. Now I have been off of it for about 10 days and after feeling very sick for a few days my breathing and balance have been much better - with no meds! I have to agree with PJ's statement on Herx. It seems to me we interpret it as that because we are on meds. If we werent on meds and had the same experience we would have to choose another reason for it. A few months ago I went to a "specialist" on mold. That made zero sense to me. WHY? First is because I was on heavy meds when I took the tests. Then I have lived in the same house and never had these issues until recently. Now they say the symptoms from mold are exactly the same as what we are told is Lyme and Co's. ??? None of the cause and effect that we experience make any kind of scientific sense. I know that the meds I have been taking have seriously compromised my digestion and immune functions. One day I started googling to see if there is any other disease that is treated with such a harsh barrage of abx and anti malaria drugs. NOPE. None that I could find. That alone is cause for some logical consideration. My LLMD takes insurance. He is a well respected LLMD among his peers. On a regular monthly visit he spends about 45 minutes with me. I know darn well that Blue Shield is not compensating him for anything resembling that. I trust him and also consider him to be a hero. I do not have the same opinion of some of these LLMD's that do not take insurance and charge large sums of money for simple visits. I havent seen many lymies get that much better. But if they experience a ""good" few weeks or months they classify it as the results of the meds when it may just be a normal cycle of whatever it is we have. I agree Lisa - there is so much we do not know. To me it is scary since as the IDSA says long term abx are dangerous. When I questioned that in the past the line was - we have no choice. I am not so sure anymore.
From someone who wanted to remain annonymous~ "I think the issue with treatment is that they are missing a piece of the puzzle in how to use the antibiotics. Maybe we need a new antibiotic, but I'd bet that using what we have in a different way, in the correct combination, would probably get people well. The research needed to figure this out has not been conducted thoroughly enough, with proper funding and the zeal and support of mainstream medicine and research universities that is needed. If antibiotics are such a concern for mainstream medicine and the risks that their usage entail, research into developing a medication that would stop the replication process of the bacterium would solve the problem. For now, I believe people are not getting better because we don't have enough knowledge of how to use the antibiotics to do the job. It seems that many of the doctors are grabbing at the tools, but at times we're using a screw driver on the head of a nail only because no manual has been provided. In the mean time, patients...people, human beings, suffer as a result. I believe Lyme Disease and it's associated opportunistic infections will become a story that will go down in history as a great injustice inflicted on people. Similar to the beginning of AIDS and the experimentation on people with Syphillis went through. Lyme Disease and coinfections will be something that someday people will click their tongues at and talk about not being able to imagine how people suffered in such a way, without the benefit of what will become modern and effective treatment for this constellation of illnesses. We have the antibiotics and the tools, but no one has figured out the "perfect" formula yet on how to use them effectively. I also think they should be looking into..if and when research starts getting poured into this in the way it should be..something similar to an anti-toxin like what they use in treating botulism. It would eliminate the herx reaction harming the body, stop inflammation which provides a hurdle for the antibiotics to do their job, and lessen the risk of treating the patient. 7% of Japan's population has Lyme Disease and coinfections. The research will happen, the storm is brewing and picking up speed, it's just a matter of when."
ReplyDeleteThis response leaves us with some hope:-
ReplyDeleteChronic Lyme Disease: Agree On The Questions First
Stella R Huyshe-Shires, Chair
Lyme Disease Action, Cornwall, England
Laurie McClellan's experience is echoed this side of the Atlantic; in the UK and across Europe. There is no doubt that the number of people suffering from undiagnosed chronic Lyme disease is growing. Every patient who is told "you have had adequate treatment" is added to the heap. Yet very few doctors realize that the guidelines defining "adequate" are not built on evidence, they are mostly built on opinion -- simply because the good-quality trials do not exist.
I agree wholeheartedly that we need research. But before initiating research, we need to agree on the questions that matter. To this end, Lyme Disease Action, a UK charity, is funding a project to document the uncertainties in diagnosis and treatment of Lyme disease. This process will result in doctors' and patients' top 10 research questions that currently have no answers. These will be submitted to the national research agenda.
How are we getting doctors and patients together to discuss this politically charged controversy? We are using the James Lind Alliance, which was established as an independent body to facilitate precisely this sort of exercise and has been successful in a number of other conditions and diseases (http://www.lindalliance.org/Patient_Clinician_Partnerships.asp). We are partway through this process: read the report on our website, http://www.LymeDiseaseAction.org.uk.
It is important to agree on the questions before searching for solutions. Do we know the best treatment for Lyme disease? Does chronic Lyme exist? We'll have a consensus on this before very long, and then at last we can start finding out what to do about it.
http://content.healthaffairs.org/content/31/3/647.short/reply#healthaff_el_461936
response to Chronic Lyme Disease:
It’s Time To Solve The
Medical Mystery Inside
An Enigma
http://content.healthaffairs.org/content/31/3/647.full.pdf+html
Such a tangled web Lyme weaves. The answer is often varied and way to often detrimental.
ReplyDeleteLisa, I couldn't have stated it any better and agree with you 100%. We are part of an experiment of treatment but at least the LLMDs are willing to try.
ReplyDeleteMy life has improved quite a bit just by balancing hormones and correcting deficiencies and supporting the immune system. EBV and other viruses seem to be in the mix for me too. It isn't all just the Lyme, that is the problem. I couldn't do ABX due to severe allergies. At least have some kind of life now but suffer frequent inflammatory flares. No local docs will deal with me because my disease is not clearly defined. It stinks
Research and better testing are definitely what is needed.
I've never been a fan of all these expensive treatments. I've tried several of the less expensive ones like MMS, salt/C, GSE/teasel..... my problem is commitment! LOL! I can't seem to stay on any one for very long! The only thing that I have stuck with, and I KNOW helped me a lot was straightening out my hormones. It has not been perfect, and I've screwed myself up a few times, but it's been the most consistent and most helpful thing I've done. I'm now doing Liposomal Vit C... I plan on doing this for a while and sticking to it. I don't have a good LLMD to guide me, so I'm self treating... I'm doing what I can!
ReplyDeleteYou speak of the reality and truth of the matter, Lisa, and I commend you very much for this blog post. It certainly will not win you any popularity contests, though, as I can attest to from my own experience regarding this subject/opinion. Of course, I also very much agree with you – my opinions are very similar, and I have come to this point after researching myriad angles of this multi-faceted beast for nearly 30 years. Maybe “Lyme” disease is not too much of a problem for those who are not left untreated for decades and decades. But for those of us who have been left to rot for most of our lives, reality is not a very pretty picture.
ReplyDeleteWe appear to be dealing with something that was likely created, on purpose (and in secret, obviously) or was a MASSIVE mistake of a monstrous experiment gone awry, to NOT be easily remedied. There are no true answers, and thus we continue to suffer horrifically with little compassion, nor understanding, nor answers. Mutations, bioweaponization, nanotechnology, etc – try asking your doctor about these components -- lol. You’ll more likely get locked up in the psych ward than receive and sound understanding, advice, compassion, or treatment(s).
Allopathic treatments are horrifically antiquated and toxic, while naturopathic therapies tend to be stabs in the dark and can also be toxic. And healthcare providers are trained at universities across this country to NOT know anything about any of this (again, on purpose). They are actually not taught anything even remotely close to anything that would help them to acknowledge/diagnose/treat/research what is really going on here. So, yes, there is very little difference between the literates, the non-literates, and even the conspirators/”bad guys,” in a sense.
We are the canaries in the coal mine, the human guinea pigs. I know that this is not a popular opinion. But I am a realist. I see what I see and I know what I know. Even more importantly, I sense and feel what I sense and feel.
This whole thing is huger than most people will ever dare to imagine.
Lisa, I agree with you on this line of thinking and am quite relieved to find that there are a few other people in agreement as well. Heck, Lyme Disease can be a very isolating thing to have as it is, let alone having views on it that are a lot different yet. I admire you for putting yourself out there and writing about this!
ReplyDeleteIt has taken me 14 years to come to similar conclusions. I found myself very angry recently at the two opposing Lyme "camps" wishing all the disagreement and bickering about the name "Chronic" Lyme Disease would stop. I really dont care anymore what they call it. The whole antibiotic topic, persistant infection or not topic, diagnostic testing validity, IDSA vs ILADS, mainstream medicine vs natural, is tiring and not getting us what we really need. What we need is help that we can trust. Come on guys in charge, put your egos away, thinking caps on and focus on helping us overcome this monster illness and heal so we may live and prosper once more.
What has helped me more than anything else was to make changes in my life that were towards better health. Dietary changes, not the restrictive thing so many are now doing, but simple back to basic clean living. One small change at a time, no help from doctors anymore, I got much better on my own. Still not 100%, more like 70% healthy. Still have flares but I know what causes them and it usually my own fault. Too much stress will do it every time!
Thank you so much for writing in Muggole! Glad to know there are other like minded people. I really thought I would get "hate mail" from other lymies when I wrote this but it has been quite the opposite. I think many people think this way but are scared to say it on the Lyme boards.
DeleteIn the meanwhile I just see a whole lot of desperate people clinging to the same old treatments because what other choice do they have? We need better choices for sure, more research research research!! From someone who is non biased and starting at the beginning.
I also think there is more to this including chem trails, pesticides and all the other bad stuff in our enviroment, and I'm like you. I think we need back to basic living. I am also doing diet changes right now, and it really helped to read your experience has been good with this. Really that made my day to read that. I no longer can afford lyme drs or even gas to go to one that medcaire might approve. I have to take this into my own hands and make changes, so diet it is. Thanks again Muggoogle!