Friday, January 27, 2012

11 Rant: Why Dealing With Lyme Disease Drives Me Crazy. (Part 1)

Note: The content that follows is part one of a personal rant and is atypical of most content as well as context covered by this blog. 

I've been meaning to write this entry for a long time.

Many attempts have been made before this - many which have been scrapped because they neither met my general standards for publication nor managed to convey what I wanted to express.

 But I have to get it off my chest because face it, I've been dealing with this condition and its complications for years now and every so once in a while I've gotta just let it all rip, Camp Other style.

Why Dealing With Lyme Disease Drives Me Crazy

Where do I even begin?

Let's start with the more obvious, from a patient's perspective.

1) Because the lack of early diagnosis and treatment occurred for something which should have been obvious to not only the first family doctor who saw me - but the second one. 

I had a textbook case of Lyme disease: EM rash, history of a tick bite, and symptoms consistent with a Lyme disease diagnosis. I knew the geographic location in which the tick had bitten me because I found the tick within a day of hiking in an endemic area. The state health department and university researchers knew it was an endemic area.

The index of suspicion should have been high, but I was treated dismissively and told that Lyme disease doesn't happen in my state or the area in which I'd been bitten.

Admittedly, I myself did not know how endemic the area was for Lyme disease until after I received my bite and went to my first doctor's appointment. It's after that point when I decided to look it up, and discovered the doctor had made a mistake. People are human and doctors are human and make mistakes, but for me this has been a very costly one - the doctor I saw should have known more about surveillance and epidemiology in the area than I did.

The second doctor had an opportunity to see my larger than 5 cm expanding rash and still thought I just had a sinus infection. When I brought up that I thought I may have Lyme disease, the doctor ran an ELISA -  but this testing was too early to show an antibody response. What the hell, I already had an expanding EM rash - I was treatable on that count alone. Again, a sign of ignorance about the disease, even from a basic IDSA/CDC/State health department point of view.

After having read many other patients' stories about having had a similar experience, I can only suggest that doctors need more education about tickborne diseases and to be more vigilant about immediate treatment as the risks of early treatment are far less than managing complications that come from disseminated and late stage infection.

 2) Because of the lack of a timely and accurate diagnosis and treatment by a family doctor, I ended up seeing an LLMD for diagnosis and treatment.

After my initial research of Lyme disease, of course I came across information about the controversy in Lyme disease and both information singing the praises of LLMDs and how they saved patients' lives as well as information condemning them for their overpriced fees, lack of taking insurance, rude support staff, difficulty in getting appointments, and unproven protocols. I heard both sides from patients. I also got to hear criticisms about LLMDs from some science writers and medical professionals about how their diagnostic and treatment methods were not well supported by science and that LLMDs were only out there to take advantage of the gullible.

I got an earful early on, believe me. But despite hearing the negative reports, I still found myself in the position of having to make my own decision as what to do next and soon, because I was so sick.

I had to do something. I could barely think straight at the time. I was so ill I could barely follow someone else's conversation. I could only read in very short spurts. I was exhausted, in pain, could not work, and could barely take care of myself.

I had to network with people and figure out what I was willing to do. I had to rely on others' suggestions and concerns more than I usually would simply because I had trouble thinking straight. It was rough going.

In time, I realized not all LLMDs were cut from the same cloth and I already knew why I was sick - so controversy or not, I was going to go where I knew someone would help me. If an LLMD was going to treat my Lyme disease and the doctors I'd seen at my supposedly highly rated clinic weren't, I was going to see an LLMD. Simple as that.

At the time, I didn't want to get involved in the controversy at all - even as I felt sympathy for everyone dealing with long term symptoms. I thought that as long as I was treating this infection early that I would be one of the lucky ones - I would take antibiotics for 3-4 weeks and not have to face persisting symptoms.

However... I was wrong. Only I didn't know it at the time. My infection disseminated fairly quickly early on and I was already sicker than others who had acute Lyme disease and received treatment early. I developed symptoms of a coinfection later on that I would not have known to look for or even suspect. The LLMD did suspect this coinfection, then ran tests - for which I was positive - and as a result, I was treated for it and my symptoms improved.

I am still in less pain than I used to be and some of my symptoms completely disappeared from this treatment, so I think there were measurable gains and seeing an LLMD for treatment was the right thing to do when I did it. I genuinely had Lyme disease to begin with - and if two other doctors were not treating it - then someone else damn well was going to treat it.

My question is why did I have to see an LLMD for all of this when a well-trained family doctor should have known from day one what was wrong with me and treat it back then?

Maybe in my case, weeks or a few months of not having treatment or having inappropriate treatment made all the difference in the world for my outcome. The earlier the better, they say. And I could have had that and sidestepped this mess had the family doctors I'd seen earlier on knew what they were looking at and got right on top of it.

3) Because for some reason, having a Lyme disease history is either not calculated into any new symptoms I present to most doctors (both family practice and emergency medicine) and each symptom set I experience is either attributed to something entirely new and separate - or I am told that there is nothing the doctors can do for me (not even palliatively).

Again, I see this response as a lack of education of the doctors in question. I think that doctors have to take into account that even if they themselves do not believe in a chronic infection model of Lyme disease which the Lyme disease patient community supports - that they need to at least consider that the patient in front of them with a history of Lyme disease may be suffering complications related to having had the infection, and to consider the possibility of a coinfection or relapse of a coinfection where symptoms appear to overlap.

If Babesia is a growing problem in our national blood supply and has killed people through transfusions, it seems important to me to rule out Babesia in patients whether they have a mild presentation or a serious one. The risk to everyone's general health is involved.

Sometimes I think it is not just a lack of education which prevents family doctors from dealing with Lyme disease patients. Sometimes it's a matter of fear of not having enough expertise and making a mistake, and not knowing to whom one should refer a patient. If family doctors were better trained to begin with, though, then they could gain that expertise themselves and be the front line for diagnosis and treatment as most patients expect them to be.

Other times, I think part of the issue is that some doctors have decided to overgeneralize about what they read from various medical journals, letters, and reviews, wherein the author states that at least half of those patients claiming they have chronic Lyme disease never had Lyme disease in the first place. Once having digested that nugget, the doctor then may go on to think that a patient who tells them they either have or have had Lyme disease that because it's at least a 50/50 chance the patient never had it in the first place that it is data not worth considering.

Given the growing number of documented Lyme disease cases reported to the CDC annually, I'd like to suggest to these doctors that they nip that thought in the bud and just look at each patient as an individual and consider that their Lyme disease history may play a role in their current symptom set. They don't even have to enter into the controversy to go there.

4) Because of the changing face of the medical profession and doctor-patient relationship in an era of managed care, anyone with a chronic or hard-to-define illness is getting shortchanged these days - and sadly, at times readily receiving a mental illness diagnosis when the evidence for one is weak at best (or at least not the primary cause of their symptoms). 

After reading many different patient forums - not only for Lyme disease, but for conditions like fibromyalgia and CFS/ME or even rare, orphan illnesses which most people do not know anything about - I've seen this happen time and time again: Doctors trying to nail down a diagnosis for a patient within that 10-15 minute appointment window, and when there seems to be "too much going on" for the patient, the immediate suggestion by the doctor is that the patient's condition could be psychological.

Now, I acknowledge that a number of physical symptoms are related to depression and anxiety, as well as chronic stress. And if one is suffering from these conditions, they need to be recognized for what they are and receive proper care. However, I think some doctors are too quick to make this judgment and need more time to listen to patients and create a list of non-psychological physical, endocrinological, infectious, and/or immunological disorders and conditions to test for first before referring patients to a therapist.

Or if the person is obviously psychologically ill, to at least consider a biological basis for that illness or that it may be contributing to it. There is no reason not to run tests while referring one for therapy just to deal with the frustrations of being ill, either - and a caring, compassionate doctor will know how to finesse the situation so that both physical and mental bases are covered without being dismissive towards their patients.

For what it's worth, my family doctor has not diagnosed me with a mental illness. I myself have sought out therapy for depression while dealing with illness - and of the two therapists I have seen, both have told me to keep talking to doctors because it's their assessment I am physically ill and disabled and any depression I have stems from my health - not the other way around.

The biggest problem I have had with being told "it's all in your head" came from ER departments who could not figure out what was wrong with me in the handful of hours that I was there.

5) My treatment has not led to a full recovery or even closer to a life where my symptoms are stabilized.

Some patients within the Lyme disease community have gone off on me for what I'm about to say, but it's an honest assessment about where I am: I have come to accept that I may never regain my former health again and be 100% cured of the symptoms I'm having.

I don't have any expectations that I can return to my old life and do what I used to do and have the same amount of energy I once did. Even if I could be assured of being cured now, there may still be residual damage in my body - plus I am getting older and my body has been deconditioned by years of nearly total sedentary living.

At times I have felt like I've been fed a false hope that I could recover 100% from treatment, because I have certainly tried a lot, above and beyond what the original IDSA Lyme disease treatment guidelines stated. I have not fully recovered, and it's already been several years since I was first infected.

While I do what I can within my limits to try to stretch and improve my health to the degree that I can, I'm aware that there is so much that isn't known about or understood about my condition that it doesn't seem unreasonable to me that I may not get back to my previous state of health before the tick bite.

About the best thing that has helped me was Mepron for Babesia. It helped take care of a number of the most debilitating symptoms I've experienced. But everything else has either resulted in temporary gain or made me feel so much sicker for a longer period of time - that for months at a time, I actually feel much better doing nothing at all.

This is not to say I will never try anything again. It's to say that I want more evidence that the next thing I try is going to make a positive difference and have a good idea of why and how it is going to make a difference. But it seems to me that as time goes on, I still have bad days and less bad days and occasional good ones regardless of what medications or antibiotics I'm taking.

My experience leads me to believe that I either have permanent damage or long term damage that will take years to heal - or that the proper treatment for my condition has yet to be discovered. This is one key reason why I think more research - particularly treatment trials - is important.

6) Because there is a lack of societal and institutional support for someone suffering from my condition, as well as the lack of a streamlined process for acknowledging and supporting how my condition disables me - a condition which should receive official recognition as a disability.

Mainstream medicine has societies for cancer research - multiple societies including ones for specific cancers. It has workshops and support groups for cancer patients. It has programs on nutrition and cooking for cancer patients on site at hospitals and clinics. There are large scale races for the cure and other fundraisers. There are conferences on cancer which some patients are invited to - and some not. And there are many oncologists and oncology staff members and therapists who specialize in dealing with the issues cancer patients face. So on an institutional level, the need for support and education for cancer patients is recognized and accommodated.

When it comes to other doctors' attitudes about oncologists, they do not envy their jobs and have respect for the difficult job they have to do. Being a family doctor, you are more likely going to see minor problems you can fix and not have to watch someone die of cancer before your eyes.  So there is a certain amount of personal and professional respect from many doctors towards oncologists just because of what they have to deal with on a daily basis.

From the perspective of someone who has had post treatment persisting symptoms of Lyme disease (however you name or characterize my condition) I have felt marginalized and that the kind of support I could use has been lacking.

There is nowhere near the infrastructure available for someone with my condition that there is for someone with cancer. If it weren't for some online forums, a few LLMDs, and a few organizations that bend over backwards to recognize that my condition is debilitating - there would not be anyone at all to acknowledge and validate my disability.

I deal with a condition where the doctors - LLMDs - who try to treat patients like me do not receive respect from a number of other doctors, some researchers, and some members of the media. And as patients we will continue to see these doctors not because we are gullible - but because they are actually trying to help us.

If those whom disrespect them have an issue with this, then instead of knocking the doctors who see us and the treatment we undergo, they should make more of an effort to provide patients with a helpful option under their care. We will vote with our feet if you have anything better to offer. And believe me, we are all such big mouths in the Lyme disease community that we would let everyone know if others' approach and treatments really helped us. Even if only symptomatically. Even if it wasn't a cure.

Now, admittedly, there are fewer people who suffer from my condition than who suffer from cancer. But even so, it seems that no matter how many or how few people suffer from a medical condition and/or disability, that there should be a certain baseline recognition, acceptance, and accommodation for that condition or disability. Not just from patient organizations that patients have had to put together from scratch - but from medical institutions, doctors associations, societies, and research groups.

There is something, though, that has troubled me about what makes post treatment Lyme disease (or as the IDSA puts it, "Post Lyme Disease Syndrome") different from other conditions (orphan, or of unknown etiology) that has made me wonder how it has come to be treated as it has been, historically:

Unlike other conditions where the cause is unknown and speculated about, mine does have the distinguishing characteristic of having been triggered by Lyme disease in some way. There is a clear issue of cause and effect here; of some sort of relationship which has already been defined in medical literature.

But people in my situation don't even have the benefit of having the label of "Post Lyme Disease Syndrome" holding significant meaning for them when they apply for disability - even though a number of us suffering with persisting symptoms would be considered to have this condition by some medical professionals.

In the Klempner trial, it was noticed that those most severely affected by this condition had a quality of life and functionality similar to patients with congestive heart failure. This statement was not made by an LLMD (for those whom have issues with an LLMD and may be dismissive about such statements) - this was a statement made by an academic researcher who studied patients suffering with my condition, whatever label you want to apply to it.

Somehow, it seems that whatever I have should be taken more seriously, and there should be more institutional and societal support for it. It shouldn't be a backbreaking effort to explain what ails me - with my medical history, test results, and clinical diagnosis, it should just be accepted as part of my reality and worked with, rather than denied and shrugged off.

Note: Minor edits for style made to this text January 28-29, 2011.

This marks the end of part one of my rant, Why Dealing With Lyme Disease Drives Me Crazy. Continue on to part 2 HERE.


11 comments:

  1. Bravo Camp Other! I often wonder why GPs do not have even the most basic Lyme education. Or why it is so belittling to seek any kind of treatment. I get mad when all my friends 'run for cancer' and have no knowledge how well cancer is actually funded. There is No common public understanding/ funding for Lyme. And yet billions handed out for other diseases. The damage done to people who suffer needlessly because
    the doctors are turning a blind ignorant eye. There are times I'm more pissed about this (Lyme rage) and times
    I just think the world is falling into a deep chasim of lies
    and government conspiracy dictatorship. We the people
    have no more control those that serve and protect.
    All your points are valid-we have all felt helpless with this disease. I only pray that in my life time things get
    better and truth, justice prevail. If the IDSA continues on
    it's path of denial we are all just going to have to fight
    harder. -Jess

    ReplyDelete
  2. Jess,

    Thanks for the compliment.

    I think it's scary that the first doctor most people see when they have what I view as an easily diagnosed problem is the doctor who could ruin their lives - for many years, if not forever. And this by not diagnosing the condition early, when it has not yet tilted into the stage where it's controversial.

    When doctors aren't even diagnosing and treating according to the CDC and IDSA and entirely missing acute cases - and I've seen it happen in more than a few cases - something is wrong. I don't know where the point of failure is - I imagine many doctors are overworked and tickborne infection was a small chapter in their training. It needs to be updated and used more often, from what I can see.

    ReplyDelete
  3. Jess, addressing the rest of your comments:

    "I get mad when all my friends 'run for cancer' and have no knowledge how well cancer is actually funded. There is No common public understanding/funding for Lyme. And yet billions handed out for other diseases."

    I share in your anger. I'm not angry about a lot of people getting support for cancer or funding for it - it is a serious condition and a major cause of death. Any one of us could develop cancer. I do wish though that more money was invested in research for tickborne infection - especially when there is evidence that contracting one is connected to other conditions - including b-cell lymphoma and Behcet's disease. How many infections are a precursor for other conditions remains to be seen - but prevention and the needed treatment early on in infection usually leads to much better outcomes.

    I would like awareness for tickborne illness to be as present in people's lives as much as cancer awareness is. Especially since the chances of contracting tickborne illnesses has been rising - even spiking in places - and knowledge about it in advance could prevent so much suffering.

    And I'd like to see the social response to those who have persisting post treatment Lyme disease symptoms become a stronger, more positive response. To have more compassion and less derision thrown our way from a handful of writers in online media. To have more support and accommodation by more medical professionals at large.

    Even if they do not accept a chronic infection model for my condition, there is no reason why they can not accept I am not well due to complications from Lyme disease and be attentive to this fact.

    I am hoping, though, that as more research comes out and is publicized that there will be a greater recognition that scientists and doctors do not know everything about Lyme disease and how it has affected patients. There are a number of scientific unknowns and research that needs to be done.

    (more)

    ReplyDelete
  4. (Jess - cont'd)

    (I have got to get used to Blogger's new "Reply" feature. Sorry, not with it tonight.)

    "The damage done to people who suffer needlessly because the doctors are turning a blind ignorant eye. There are times I'm more pissed about this (Lyme rage) and times I just think the world is falling into a deep chasm of lies and government conspiracy dictatorship. We the people
    have no more control [than?] those that serve and protect."


    (I tried to edit your comment - not sure I got the gist of it, so help me correct if wrong?)

    As I've said before, I've heard a number of stories from other patients about early missed diagnosed. And while doctors are human and prone to mistake, some of the examples given are so egregious that they are worse than my own (and from my point of view, missing the obvious nature of mine blew my mind).

    There is no reason for them to turn a blind eye. Why would they when it's early and obvious? It doesn't make any sense. Since there are doctors who do treat early and acute cases adequately, perhaps we should be sending these doctors to them for training if not back to their medical schools.

    You know my feeling about conspiracy theories, so I don't find it necessary to get into my position much there. But I can say that it's my take that the current medical system and culture in which we live has a number of individuals in it who are overworked and overloaded and some who are so burned out that they are going through the motions... Sadly, some people are not in the business of doctoring because they care about people's health, and some people do not recognize that doctoring is more than a business. For them, it's a job - it's not a calling. I think they ought to get out, but it is very hard to get out when you have already invested so much in your career.

    I keep trying to put my finger on something about this situation and frame in words which suit... The more difficulty we are faced with, the easier it is to be overwhelmed by it and to begin to paint the whole world as being against you. There has always been corruption and greed in the world, and a lack of compassion from some people. There has always been incompetence, too. But one doesn't need a massive conspiracy in play to see that individuals can fail to do their job and/or don't care about it.

    ReplyDelete
  5. You are as eloquent as ever, CO, and you raise so many important questions and observations that no doubt resonate with many who read your blog.

    There is no good reason that I'm able to fathom as to why people suffering from tick-borne illnesses are largely ignored (or worse)by so many medical professionals. Those individuals who publicly berate Lyme disease patients seem to have little or no idea just how disruptive Lyme disease can be to a person's life. It is equally hard for me to understand why anyone in the medical field feel justified in ignoring a history of Lyme disease in their patients. All in all, I find much of what goes on in Lymeland to be mystifying -- and sometimes even (temporarily) infuriating and/or demoralizing.

    As hopeful as I would like to feel when it comes to continued health improvements in what may well prove to be a prolonged recovery process, I share your sentiment that some of the damage caused by tick-borne illnesses may not always be reversible -- at least not using existing treatment methods. More than one doctor (including an Infectious Diseases specialist) has actually been forthright enough to bring up this possibility, and I really did appreciate their honesty.

    For those lucky enough to achieve a complete recovery with adequate treatment and/or the passage of time, I think that's simply wonderful. For others who continue to struggle for years -- and possibly forever -- with ongoing health challenges that were triggered directly or indirectly by Lyme disease and other TBIs, it only seems fair that they receive meaningful support from the medical community and society in general. The vast majority of people I have communicated with in person or via forums do not have much (if anything) in the way of a support system. For some, the internet provides a lifeline of sorts -- and sometimes that clearly isn't enough.

    Despite all the frustrations and lack of support we may experience along the way, I still recommend that we continue to do our level best to find value and peace in our lives despite the challenges and often profound discouragement.

    I do think it's very beneficial for all of us to get things off our chest from time to time -- if only to give a voice to those who cannot speak or write for themselves. Thank you for doing so.

    ReplyDelete
  6. Thanks Camp I needed to read this today after once again getting the brush off from ENT consultant yesterday- my constant right ear/sinus problem might or might not be related to Lyme but it sure gets so much better on clarithromycin which I was taking as part of my lyme treatment. Now a year off antibiotics and struggling with ear and over 6 months wait for some arrogant consultant to make me feel rubbish I will once again take what few tablets I have available to get some relief and then once they are gone try Samento again which also helped.
    So I appreciated reading your post today- is it any wonder we end up self treating when consultants are incapable of having a two way consultation.

    ReplyDelete
  7. Joanne wrote:

    "I needed to read this today after once again getting the brush off from ENT consultant yesterday- my constant right ear/sinus problem might or might not be related to Lyme but it sure gets so much better on clarithromycin which I was taking as part of my lyme treatment. Now a year off antibiotics and struggling with ear and over 6 months wait for some arrogant consultant to make me feel rubbish I will once again take what few tablets I have available to get some relief and then once they are gone try Samento again which also helped."

    Sorry you have been brushed off by the ENT consultant today. I really think that s/he would be a better ENT if s/he factored in your medical history and previous antibiotic use into your current condition. That's just good professional practice.

    It's my position that even if the ENT thinks the concept of chronic Lyme disease is flawed and s/he doesn't believe in it that your individual response to therapy is what should matter most. And if you have been on long term antibiotic treatment before this, your history of how you responded to specific antibiotics and whether or not you developed any antibiotic resistance could be important in how you treat this ear/sinus problem. It may be a stubborn infection caused by a non-Borrelia organism that also happens to respond to clarithromycin - something, of course, that more doctors are likely to think.

    I don't think you should have to wait 6 months for an appointment to see this ENT or to get treatment for what sounds like some infection in general. It could spread and deepen in that period of time. Is the waiting list for NHS specialists that long now? I knew there were new austerity measures in place but didn't know how/if it affected the NHS.

    I hope you can get better treatment (another ENT who can at least acknowledge you have a condition which is antibiotic responsive) and that you feel better.

    "So I appreciated reading your post today- is it any wonder we end up self treating when consultants are incapable of having a two way consultation."

    Indeed. And then people wonder why the Lyme disease patient community comes up with some pretty off the wall alternative treatments for their condition... I see it as a response to the fact that patients are not getting the help and support they need from those who are supposed to be doing their job (and hopefully, calling) as well as the medical system in which they are trapped.

    ReplyDelete
  8. It's very sad that many doctors don't recognize the typical em rashes. I had an oval rash on my chest and was sent home with a lotion instead of an anttibiotic. As a result the rash expanded and then I developed 2 more rashes. I basically had to diagnose myself. My treatment was delayed and inadequate. Seems like you went through a similar situation. I'm better but not the same as I was before the rash. I feel all doctors must be properly educated about Lyme disease starting with the rash. Take care

    ReplyDelete
  9. I recommend toeveryone with Lyme Disease to read the THEW TOP 10 LYME DISEASE TREATMENTS from Bryan Rosner. I am just finishing the book, and from the dispare and helplesnes I am having feelin of hope. I know now what to do, even if doctors do not know or want to participate in the lenghty Lyme treatment. I already ordered Rife machine and when I get a little better will try the marshall's Protocol. I am to sick for it now. Also I do not know if you are aware of the fact that id medication works for Lyme that you get actualy very sick at first, due to the release of the nneurotoxins from dead bacterias. I hope this information will help you to get better. if you want privately to correspond I am here for you. I am the same lonely and unable to do anything most of the time. I am getting tired of this house lately.

    ReplyDelete
  10. Hi Anonymous from April 30,

    I am sorry you have been lonely and not feeling well. Being chronically ill can be hard. I feel fortunate because I have a few loyal friends who have been there for me when there have been other friends who have not. Some people are not equipped to deal with another person's illness and distance themselves. This seems to be the same story for many people I know of with chronic illnesses and not just Lyme disease. You find out who your real friends are.

    While I am familiar with the book you have recommended, I have not mentioned it on this site. Reason being that there is already a lot of information online about this book and others have reviewed it from their own experience in using it - and also, if I recall correctly - whether or not these treatments work for someone is entirely anecdotal.

    In general, the focus of this blog is not on anecdotes as much as it is on other subjects; the focus of this blog has been on old and new scientific research, Lyme disease in the media, news about new serological tests, rants about how patients are treated, facts and trivia about Lyme disease and coinfections - and not so much on treatment in general, either allopathic or alternative.

    I have considered writing about research which focuses on alternative medicine - but have not yet written about this topic in any great detail. If I do so, I aim to find evidence which supports the use of any herb or alternative treatment - or at the very least, a solid hypothesis as to why it might work along with a list of drawbacks and benefits.

    (more in another comment)

    ReplyDelete
  11. (More for Anonymous from April 30)

    I appreciate that you took the time to comment on my blog and offer advice, that was thoughtful of you. Dealing with this disease is no fun and one of the few things that makes it easier for me is trying to find a way to help others even though I've been hurting.

    I'm at a point where I've been dealing with this for several years, so even as I might rant about how this disease is treated and how patients are maltreated and misdiagnosed, after several years of experience I have gained a different perspective than someone who is newly diagnosed with Lyme or late stage Lyme disease.

    At this point, my perspective is that a good many things may help people feel better and manage their symptoms better, but nothing is a guaranteed cure. Also, since not everyone who has had a tick bite has been infected with the same pathogen set - nor do they have the same genetics and immune profile - it seems different treatments are needed for individual people.

    More research is needed to be able to determine whether or not people are suffering with a persistent infection - and if so, which infection(s) and how to go about eradicating them in a shorter period of time. I think the answer lies in the future and research must be directed there. This is what I want to petition for.

    In the meantime, we as patients are all having to weigh the pros and cons a number of experimental treatments - especially if antibiotics alone do not work for some of us. We are having to take medicine into our own hands and try to provide each other with hope and the answers, even when it isn't easy and the research is slow. I wish it would hurry up.

    I have not bought a Rife machine. It's unlikely I will. The greatest improvement I have seen was from my treatment for Babesia, using Mepron and azithromycin. That and some antibiotics I have used in combination for Lyme disease. And I have had some symptomatic relief from acupuncture, massage, hot baths (especially with salts), and sleep (if I can manage it).

    Nothing has cured me or gotten me back to my original state of health, which while not "Olympic athlete level" was at least at "the local gym and hippie backpacker" level - if that makes sense.

    Still, I keep plugging on. I'm not one who easily gives up. I think that's very important in dealing with this condition: Realize it is a quest and ongoing process. Take it day by day, and realize there will be both milestones and setbacks.

    ReplyDelete

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