Lyme exhaustion?? Herx? How tired can CSA make you feel?

Jake, lyme can make you feel so many things. The list of symptoms is exhausting just to read.

A herx is just a magnification of those symptoms due to toxins not being able to get out of your body.

Do you detox? That is imperative if you have lyme.

Check out the New To Lyme? thread. There is a post in there about detoxing.

So sorry you have suffering from lyme. By the way, my first few months of lyme and treatment, all I did was sleep all through the night and take napS all day long.

Sleep has always been my "go to" when I am ill, so I was not surprised. Sleep is when we heal a lot.

I would like to thank all of you for taking the time to write such detailed and thoughtful responses. I have much to look over and study within those answers.

I remember finding a black mark on my skin just under my right hip about 5 years ago or more. The incident was diagnosed as a brown recluse bite by a dermatologist. With that diagnosis, no antibiotics were given as it was assumed to be a necrotic wound. I was living in Wisconsin within the epicenter of the Lyme disease epidemic at the time. Notably, that region is said to have little or no brown recluse distribution. I have since read that often the mark related to a Lyme disease infected tick bite can appear black or contiguous instead of as the classic red bull's eye pattern. This leads to the common misdiagnosis of a brown recluse bite when a patient has actually contracted Lyme disease.

Within the following months, I progressively experienced unusually intense burning joint pain despite being in my mid 30's. Friends that I regularly went cycling with commented on it being odd that my joints were so bad all of a sudden at such a young age. I was known as one of the most active people in my office and spent much of my free time outdoors running, cycling, or walking through the beautiful Wisconsin hills. This focus on an active healthy lifestyle ironically is what led to my tick exposure as I often walked an hour in the woods daily for exercise at lunch and biked 20+ miles a day in the summer after work. Ultimately, over 1.5 years later, I tested CDC positive for Lyme and it has since ruined my career. I was working in Hollywood after living in Wisconsin and I was very respected. However, I began making odd mental mistakes that were beneath my typical performance level or intelligence. I had spent years using and even creating technical CGI software tools. After the effects of Lyme crept in, I was reduced to not being able to remember basic instructions from my art director. Now, post Lyme disease, I am just a stay at home dad. I taught at the state university for awhile despite excruciating neuropathy, confusion, joint pain, and a mild central tremor. I hid all of these symptoms from my students and I did well as a professor, but it was much more difficult than it should have been due to an ongoing private battle that I held with this disease. I don't even try to explain my symptoms to people because they often would not believe that I am living like this and just dealing with it day by day. What I mean is, some days it feels like someone is peeling my skin back and rubbing salt in the wound continually. Yet, I can't just stop living and when I am that person buying supplies at Home Depot, I will smile and seem totally healthy to everyone around me despite battling constant intense nephropathy. I know better than to tell friends and family the details of the pain because it sounds quite frankly "crazy". And that is the issue we all seem to face with this disease that somehow is not allowed to be a disease. I wonder sometimes if some of the doctors who say this does not exist could even tolerate a single week of this without totally crumbling. Would their professional careers withstand intense chronic Lyme? Or, would they go from prominent board doctors to possibly stay at home dads as well? Regardless, the symptoms are there and as I said it has ruined my professional career. I know that some see this as a catch all for people that are "hurting" or fatigued. I admit that, if this had not happened to me, I would never have believed it. But, the unfortunate thing is, it is real and it seems that only many more people suffering with this as it continues to spread will lead to a future where as a whole we look back on this as a dark chapter in medical history. One of those anecdotes that leaves the informed perplexed at the actions of those involved and asking that retrospective question, "How could they have done that?" Similar to blood letting and a long list of other teachable moments in the medical community's ever evolving picture of reality.

Post Edited (jake_lyme) : 7/30/2017 4:11:14 AM (GMT-6)

Hi Jake -

Glad you found us.

The other members gave great input - don't have much to add. I'm sorry you're struggling like so many of us are. Your story parallels mine, too - I already had a very successful career before the bottom dropped out of my life and I had to learn how to be my own health advocate and diagnose and treat myself, basically. I already had a career that I was paid to do - now I'm not only not doing my job, I'm not getting paid for it nor am I getting paid to do someone else job, which I've been doing for the past 4 yrs. Took me 16+ yrs to get diagnosed and I've been treating for 4.

But, things have improved and I'm definitely better and moving toward the finish line (so-to-speak).

For some of us, through self-preservation we don't talk or share the truth about Lyme or how it's destroyed our lives. I get that - and it's most important to take care of yourself. I know this approach can be critical when you're just starting out and juggling so much where diagnosis, treatment, and how to live are primary.

But it's through exposing the truth and the system's lies, through educating others and sharing our truth that things will change. We need all the warriors we can get - out there, talking and sharing. Not just to hopefully prevent others from experiencing what we have, but to help generate public sentiment and action that can lead to change.

-p

Girlie > I never tried anti malarials but I have recently thought about looking into those. Yes, she is a LLMD and awesome. When I vent about physicians, she is not included. I have not been on Rifampin with other combinations of antibiotics but I will ask my doctor about that. I had an unusually good day today after doing heavy detoxing for the past couple of days, but continuing with high quantities of CSA.

Pirouette > The detox advice seems very sound. Thank you. And yes, it is ethical to stop hiding my Lyme story in fear of recrimination or judgement as chronic Lyme is real and the more people that attest to that, the sooner patients will receive care and a cure. Companies and labs do not set out to cure diseases that don't exist. Awareness advocacy is step one and I admit that I don't discuss my illness at all publicly or in my day to day life. Only a few close friends understand the real gory details of the struggle and I even spare them much of it. When my father was dying, I told him I was cured and felt perfect so he did not need to worry about me while he was terminal. In fact, I was experiencing the typical intense neuropathy, fatigue, and fog that I always have. He died thinking I was cured. He actually was a very successful physician himself and was converted to a believer on chronic Lyme by my experience. He knew I had no history of wanting attention and that I am generally very stoic. Often I don't care to mention it for fear of professional or personal impact. If it was recognized as an actual disease that might make it easier of course. It is that extra burden of carrying a "non-existent" painful disease that makes this all the more cruel for some.

Thanks again to all!

jake_lyme said...
Girlie > I never tried anti malarials but I have recently thought about looking into those. Yes, she is a LLMD and awesome. When I vent about physicians, she is not included. I have not been on Rifampin with other combinations of antibiotics but I will ask my doctor about that. I had an unusually good day today after doing heavy detoxing for the past couple of days, but continuing with high quantities of CSA.

Pirouette > The detox advice seems very sound. Thank you. And yes, it is ethical to stop hiding my Lyme story in fear of recrimination or judgement as chronic Lyme is real and the more people that attest to that, the sooner patients will receive care and a cure. Companies and labs do not set out to cure diseases that don't exist. Awareness advocacy is step one and I admit that I don't discuss my illness at all publicly or in my day to day life. Only a few close friends understand the real gory details of the struggle and I even spare them much of it. When my father was dying, I told him I was cured and felt perfect so he did not need to worry about me while he was terminal. In fact, I was experiencing the typical intense neuropathy, fatigue, and fog that I always have. He died thinking I was cured. He actually was a very successful physician himself and was converted to a believer on chronic Lyme by my experience. He knew I had no history of wanting attention and that I am generally very stoic. Often I don't care to mention it for fear of professional or personal impact. If it was recognized as an actual disease that might make it easier of course. It is that extra burden of carrying a "non-existent" painful disease that makes this all the more cruel for some.

Thanks again to all!

The reason I ask about anti-malarials is because if you have Babesia, then the Rifampin combinations wouldn't have treated it. Babesia is one of the three major infections: Borrelia, Bartonella, and Babesia.



The CSA you are now taking is an herbal Babesia treatment, so hopefully it will be effective and that was what you have been 'missing' with only treating Bart/Lyme.

I don't know if you can get Quinine without a prescription.

You are only looking for antimalarials that don't require a prescription?

There's Artemisinin. You can buy it on Amazon.

Then there are some online pharmacies you could use...they may have Alinia, Clindamycin.

You should discuss with your LLMD about perhaps treating Babesia with pharma - if you are interested in going that route.

I am wondering about the overall prognosis of someone with chronic Lyme. After about 4-5 years, I have some new muscle stiffness, slightly distributed nephropathy, and mildly increased brain fog. However, some of the really intense joint pain is much better post antibiotics. I think it is a fair concern to wonder what my overall prognosis might be, but I don't really expect anyone can accurately answer that for me. Are there enough samples of people who contracted Lyme twenty years ago or more to paint a picture of where Lyme charts over that time frame? I realize that so much of it varies and some see a very tragic fast decline. But are there also those who maintain a regular life with little progression of the disease?

Or, I might also ask, do some feel they have eradicated it enough to dare say they are "cured" after having chronic Lyme for some time? Is it possible to suppress chronic Lyme enough to essentially cure it?

I have heard of that word "remission" that sounds like a holy grail from here. I will keep studying and working on this. Easy to give up without support and I appreciate this group. Recently, I looked at returning to work in my career. It is cerebral and a bit demanding, so I am concerned about a health collapse related to Lyme. Of course, I would love to work professionally again, but Lyme is a constant battle. I might have the opportunity to enter Hollywood production again in about 6 months so I will buckle down on the Lyme treatment until then. I am curious to see the regiment of those who did in fact achieve remission. Could data be collected on those individuals to make general assumptions about what common treatments and actions they took to achieve that state? IE, all of them used X or did X... I realize that many of you that have been on this forum will have a picture of what is needed without even looking at histories like that.

In regards to gut health, I have been left with some confusion about that. I avoid wheat, NSAIDs, and sugars. But I will have to brush up on my gut health knowledge. At one point I was doing the probiotic teas and sour kraut but my llmd asked me to stop with that for some reason. Perhaps just active probiotic tablets again.

Thanks again!