After almost seven years of fighting symptoms related to a Lone Star tick bite (STARI), my cure came in the form of what I believe was a case of Zika. I am telling this story, because I feel like there is a lot of misinformation out there, and I may be one of the few who have encountered both of these diseases/parasites. Living in the eastern panhandle of West Virginia, I was bitten in May, 2011. Later, I acquired what I believe is Zika, while in Palm Beach County Florida, in July, 2017.
The Bite
You might be thinking, how did this guy get bitten by a tick and maybe he should be more careful; however, I felt I did just about everything right. My biggest mistake was misinformation and what I feel was a medical community that has dropped the ball, as who has even heard of lone STARI disease; and that is why I feel compelled to tell my story.
First, I am very active outdoors and well aware of the dangers of Lyme disease. I try to avoid grassy areas in the wild and avoid brushing up to plants etc. frequently look for ticks and change my clothes when I am back inside. However, on this occasion, I was simply cutting my grass. It was early May and I was cleaning up my yard for my daughter's birthday party. While cutting the grass, I brushed up again a loose branch in the middle of the yard. I avoid the areas near the woods and know the particular tree where this would have happened, as it is the only tree I came in contact with. When I was finished, I went inside, changed my clothes, and showered. Despite wearing a hat and long sleeves, the tick climbed down my neck and onto my back where I could not see it or reach it.
It would not be until the next morning when my wife would ask me about the spot on my back. Here is the thing, I never felt a bite of any kind. We were relieved to see that it was a fairly large tick and we wrote it off to being a dog tick and not the feared black-legged deer tick that spreads Lyme. My wife did her best to pull it off and we flushed it down the toilet. These were two critical mistakes. First we were wrong to flush it. Second, we were unaware that this was a Lone Star tick and also could carry a Lyme-like disease called Master's disease or STARI. I had heard of Lone Star ticks and knew they could cause some problems, but this did not look like a Lone Star tick. I had seen them in the past, and the they tend to have a star on their backside; or so I thought. Turns out the tick that bit me was a male Lone Star tick, and they are solid in color; in this case, black, and hard to distinguish from a dog tick. I did get a good look at it before we flushed it and I did notice some ridges on the lower back side, where a dog tick has a smoother more rounded edge. Identifying this tick is something I learned the hard way, after the fact. We encounter a lot of dog ticks and one difference I did notice was that the lower back of the tick was more squared off than a dog tick; not quite egg-shaped. Anyway, it was too late.
Turns out that not all the tick was removed and this was the only evidence that I was indeed bitten by a tick. This would be my only justification for treatment, as tests afterwards would come back negative for Lyme.
a male lone star tick, about the same size and color as a dog tick
Dog tick, similar in size and color to a male lone star tick
The Bite Wound
The tick bite was on my back near my lower shoulder blade. It was nothing like I had ever seen; something like a giant mosquito bite or a boil, but without any feeling whatsoever. This giant knot was about a quarter in size and looked as if I had a marble embedded under my skin. I had cut my grass that Saturday, discovered the tick on Sunday, and had this knot form on my back by Sunday night. There was no bulls-eye rash, just this knot with no feeling to it. As I wore my shirt, the lump protruded out and looked like I had hung a sweater on a hanger and there was still a lump there.
Initial Doctor Visit
So, there I am on a Sunday with a lump on my back. I did not hesitate to get it treated. I went to the walk-in clinic, as I did not think this was worthy of an emergency room visit. My primary goal was to get a recommendation to a Disease Specialist, and some immediate drugs to hopefully prevent Lyme. Little did I know how difficult it would be to get treatment. I was given a few days of an antibiotic, and they arranged an appointment to the disease specialist. It would be nearly a month before the disease specialist could see me. Perhaps this was mistake number three, I should have gone to an emergency room. However, I doubt it would have made a difference. What I would come to learn is that most doctors were unwilling to treat me without a positive Lyme test. Almost no one would believe me that I was bitten by a Lone Star tick and was having the symptoms that I was having. I also did see another general physician when offices opened up later in the week and he would pretty much save my life.
The Symptoms
The symptoms started almost immediately, dizziness and blurry vision after about three days. It was by the third day I could tell that something was not right. Over time, the most severe symptoms of irritability and inability to keep a straight thought. I was completely at the mercy of doctors. My goal for the next 5 years would be to get enough antibiotics to get some cognitive thought back to work through life issues and pursue further treatment. At times, my eyelids would swell up, and I just looked sick and or angry. As a computer programmer, I had that as a litmus test. The ability to read the text on my computer screen or write lines of code would determine my state of sickness. The worst of the symptoms would be the temper and mood swings. Imagine trying to communicate with your doctor and having this corrosive personality and high level of anxiety. They simply did not want to treat you or deal with you.
I recall this episode of Star Trek as a kid, an episode I hated. There was this outpost where some type of parasite infected the researchers on this far-off planet, and they became mad to the point they killed each other off. As the Enterprise crew investigated the outpost they too would be infected, and soon, our favorite space heroes, Captain Kirk and Spock were at each other's throats. It was hard to watch and I felt it was a ridiculous concept for an episode of the show. I really did not like watching it and the anger brought on. I am thinking that a parasite would not do this. However, I now know better. Not only was this possible, I was living through it. Things that are not part of my character, such as domestic violence, suicidal thoughts, and problems at work, were now issues I had to struggle with.
One thing the doctors would always ask me is if I had a headache. Surprisingly, no. There must have been a lot of pressure in my brain to make my eyelids swell like they did, but one of the key symptoms was numbness. I did not have much pain; maybe a sore knee or stiff back from time to time. I also did not have any sex drive or feeling of any sort below my waist at times. There were also issues sleeping, and I struggled to get a full nights sleep. It was not that I could not get enough sleep, but I did not get REM sleep, or sleep for more than five hours or so. I would have to take naps in the car on the way home at rest stops.
It would not be until a couple years later when I finally got the Intravenous (IV) antibiotics I needed that I realized how sick I was. In the past, after receiving some oral antibiotics, I would feel great relief and would relish the temporary clarity of thought. However, after the IV drugs, the improvements were remarkable. Having sexual feelings and the return of REM sleep, brought on some crazy dreams. One thing I realized was, that you do not necessarily know how sick you are, especially when the main side effect is numbness.
The First Drugs
In the beginning, I would be prescribed Doxicycline, lots of it. I would get a month at a time. I would feel great afterwards and think I did not need IV antibiotics. However, the symptoms always came back. Furthermore, as I mentioned, you do not know how sick you really are, i.e. do not self medicate. The amount of improvement would be so significant, I would think I was healed. I would never be 100%. Eventually I would have to switch to something else, as my teeth started turning grey. My other other go-to drug in the beginning would be Amoxicillin. Eventually I would be taking both together, which seemed to work well. These drugs were just supposed to get me through life, possibly cure me, until some type of positive test would come back to justify treatment using IV antibiotics.
One thing I learned from all of this, the antibiotics had a significant positive impact in making me feel better. Anyone who has ever taken something like Amoxicillin, knows it can wipe them out of energy. It can sap the strength from you as your body fights off the infection. However, for me, taking something like Amoxicillin or Doxycycline, it was like taking an energy pill. I do not know why, but it did. The affects of the STARI were numbness and these drugs seemed to purge enough of the parasite from my system, enough to give me some energy back, or at least clarity of thought. It was near immediate as far as drugs go, within maybe 30 minutes, I would start feeling better. Unfortunately, the symptoms would always come back, after anywhere from a few days to a couple weeks.
The Doctors
After about a month wait to see the Disease Specialist at what was my hospital of choice, things did not go well. I thought I would be in good hands. However, I did not have Lyme, I had STARI; or at least, I had Lyme-like disease from a Lone Star Tick. I believe it was STARI, also called Master's disease. Test after test came back negative. There would be no justification for treatment in this doctor's eyes without a positive test. Furthermore, I was becoming crazy. I was scared of the thought of IV drugs, I was irritable, I could not think straight.
Finally, I had a significant dizzy spell and became nearly incoherent with double vision. I was barely able to drive to the ER at the hospital. I literally stumbled into the ER. With a lump still on my back. The ER doctor took great care of me. Finally, an IV drip of Rocephin, and some significant relief from the symptoms. My disease specialist doctor was nowhere to be found, abandoned me, and seemed to tell the admittance doctor I was crazy, as all my tests came back negative. I was crazy; but that was because I was sick. Furthermore, the IV drip had a remarkable positive affect on me. Within 6 hours, I was back to myself again. Maybe I did not need to be admitted, but I needed help.
The Lump
I finally got what I felt was a good general physician. His patience and willingness to try new things would probably save my job, my marriage, and a few other things. until I could find a disease specialist willing to treat me. The issue that a general physician has, is that they can not approve the heavy duty IV drugs that a specialist can. Fortunately, he was a former ER surgeon, and would have no issue biopsying the lump, and later surgically removing it. The results from the biopsy revealed tick fragments, and this would lead to the verification of a tick bite, and my first step to getting treatment. However, it would still take a while to get treatment based on symptoms, not tests. He was also able to give me shots of Rocephin, and those shots would provide great relief when symptoms became worse.
I recall wanting to play soccer after the surgery to get the lump removed, and I did. As I mentioned, there was not much feeling in that area. I had the idea that I had to stay active and that raising my body temperature might help recover. That would never be the case, and what I found was that my delayed reaction time actually put me in danger of getting hurt while playing soccer.
Interestingly, I would one day wake up, many months after the surgery, and after taking more antibiotics, feel a cutting pain in my back where the lump was removed. Wow, the joy of pain. Perhaps I may be on the mend I thought. For a few months, my new litmus test would be having a cut-like feeling in my back where the lump was removed.
I might add that surgery was a last option, We tried to do a localized Rocephin shot into to lump, but this did not have much impact on my symptoms or the swelling. There was no effect on the swelling, even six months after the bite and several months of antibiotics, the lump was still there.
Drug Reactions
Pre-STARI, When I first moved to the Shenandoah Valley from the south, my immune system did not have the resilience to fight off many of the cold and flu viruses and bacterial infections. I was sick for several years and often on an antibiotic to help resolve ear infections, strep, and pneumonia. For the most part I was healthy, no real health issues, other than needing to build up my body's immunity for the area. Needless to say, I became familiar with several antibiotics. Whenever I would encounter something like strep or hard to fight-off infections, Bactrim was my go-to drug. Once I was given Ceftin, and I about had a heart attack; it made my chest feel like a rock and almost stopped my breathing. From then on I was reluctant to take anything that sounded like “cephin”. The thought of going on Rocephin IV for any period I thought might be my death. I came to find out that I was quite fine with Rocephin but not Cephin pills. Furthermore, Omnicef was not problem for me, and later would be my go-to drug for flare-ups and even other infections. In fact, I would be on this drug for a month or more after serious flare-ups a couple years after my IV treatment.
One thing I did find out, I could no longer take Bactrim after the tick bite. It still had a knock-out punch for this one case of near-pneumonia, but it would also result in the resurgence of the tick-bite symptoms. Amoxicillin, which was over prescribed by walk-in clinics during my earlier years in the Shenandoah Valley, was not really effective anymore for serious bronchial infections, but did seem to stave off tick symptoms. Omnicef seemed to be effective for just about anything, and was also the most effective against the tick-bite symptoms.
IV Treatment
I finally came across a disease specialist who somehow got my insurance company to pay for IV treatment. I went to a hospital in Reston to have a tube placed in my arm that went through an artery to my heart. It was really not that much of an inconvenience. The Rocephin came in little balloons and I would take one twice a day. I would literally take the injection while driving into work. It was just a matter of flushing the line and hooking up the ballon; then waiting for it to drain. I cannot believe I waited two years to have this done. The effects were immense. After each each visit to the specialist, he would ask me if I was getting better. Even when I thought I was cured, I kept getting better. I took the Rocephin for 45 days; probably should have taken it for longer. I could tell that my body was absorbing the drugs and I had hoped that they would remain in my body long enough to kill off the parasites. The one side effect I did have was a very rare heart palpitation; maybe once a month or so.
Semi-cured
After the IV drugs, I felt much better, but I was still not 100%, and this time, about six months afterwards, some of the symptoms would return. However, I now could control things with my attitude by taking a mild prescription of Omnicef. In fact, I found I could stop a flare-up with only one capsule.
Theories
There are a few theories why this parasite kept returning. My disease specialist suggested that it hides out in certain organs or parts of the body, even being absorbed into fat cells. I seemed to like that idea, as I would almost always get some type of flare-up when I fasted during Lent or started to lose weight. I read a more convincing article about Lyme, that it is protected by a bio-film, or incubating parasites, that then hatch and cause havoc. This made much more sense to me, because, when I did take an antibiotic, it was pretty effective in restoring me to normalcy, but symptoms always seemed to return; albeit somewhat mild compared to the initial infection.
Liver enzymes
It was early summer, 2017, it had been over five years now, and I was still having some symptoms from the tick bite. My old general physician retired and I was seeing a new one. Hoping that some tests might reveal what was going on, my doctor detected elevated enzymes in my liver. I had two tests that both confirmed this and a specialist that was monitoring this. There was some thought that this might be alcohol related or from high fructose corn syrup. The only problem was that I did not drink alcohol or much soda, and even gave up soft drinks for Lent when the first tests were taken. This kind of upset me, because, this liver specialist was unwilling to even exercise the thought that this might be from the tick bite; AND, there was no known test. The next steps was to take a biopsy of my liver. This was after the second test came back high in the early summer months. I had been down this road before, test after test looking for the wrong thing. The liver specialist suggested perhaps some research institute. Anyway, I deferred on the biopsy until December, 2017, when a third blood test would be taken. The last thing I wanted was a biopsy if the what I felt was the main culprit, the tick bite, was not even going to be tested for.
A Chance of Fate with Zika?
In July of 2017, I headed down to Florida for a vacation with my family. We also spent some time in Savannah, Georgia, then south Palm Beach County. Somewhere during that time I got very sick, with what I thought might just be the flu or something like it. I recall my eyes getting very red and feeling dry. I had to get some eye drops, but let's just say, for two days, the drops did not get the red out. Normally, I could write this off as just getting a little chlorine in my eyes from the pool, but this was something different. My eyes were red, very red, It felt different. It felt like when your eyes dry out from snow skiing without goggles, but I never had this feeling before in humid South Florida.
Furthermore, I had a painful headache and had some dizzy spells. I am not one to take pain medicine and even accumulated some Tylenol 3 from the previous surgery, that I did not take. Aspirin provided no relief, and for about a day and a half, I depended on the Tylenol 3 for some relief. Another interesting symptom was itching. I did not see a noticeable rash, but parts of my body, mainly my arms, itched. Once again, this was not dry northern winter weather, this was humid south Florida. This entire time, I just thought I was fighting off some bug, and the thought of Zika did not entertain my thoughts. You never hear about these symptoms in the news, only about the sad stories of Microcephily
One distinct symptom I would not forget were the sweats. I recall my wife coming over to me while I was sleeping on the couch and asking me if I was OK. I was literally dripping in sweat. I would have about three of these heavy-duty sweat episodes, and numerous heat spells. These sort of heat flashes would last anywhere from a few minutes to about an hour over a 5-6 month period, diminishing over time.
Perhaps the most bizarre symptom were these crazy cold sore outbreaks. Whenever I have had these in the past, a couple Valtrex tablets usually do the trick. However, I had a couple episodes that were just crazy. It felt like my whole body was under attack, and at times like a light electrical shock. It would take a dozen-plus 1000mg tablets to get things under control. I would have several new grey hairs after these episodes.
I know there were some Zika hot spots in Palm Beach, but health officials were playing it down. One thing I found out later was that my brother spent some time in the Dominican Republic, and my mother's house where we stayed. Mosquitoes are a fact of life down there, and my mother's back yard is like a rain forest. I recall walking down to the public park in the neighborhood, and my daughter recalling what looked like hundreds of mosquitos. There were also these bugs we call no-see 'ems and possibly fleas. I do not rule these out as carriers, as I know I was bitten by them too.
When I returned home and had a follow-up visit with my doctor, initially about my liver, I also mentioned my new symptoms, and asked if it could be Zika. Something was wrong with me, and these were not the same symptoms I had from the tick bite. The sweats were alarming to my wife, and the cold sore incidents were a concern to me. The doctor approved a Zika test, but did not seem to encourage it. At the hospital, they said it would be a $1000 dollar cost and my insurance might not cover it. I decided not to take the test, and went with my doctor's advice, that if it was Zika, all would be well after about six months. She was right; but I wish I had taken the test. Regardless, something happened to me.
One thing I learned here, health officials, like the CDC, lie or are simply going on bad science. First, if a Zika test costs $1000, many people are not going to pay that; therefor, the statistics of tracking of natively acquired Zika cannot be accurate. Furthermore, after hurricanes Maria and Irma, many people fled the US territories of Virgin Islands and Puerto Rico to the US mainland. So, whatever mosquito diseases were not carried by the winds, were brought over by the migration of people.
One thing is for sure, by now, my new doctor probably thinks I am crazy, but that may change. Several months later, the CDC would come out with new guidelines for Zika, pretty much stating that one should take cautions as if Zika were endemic to Florida. Really?
Liver All Better
By now, it was December 2017. I took another blood test and met with my liver specialist and general physician. I mentioned that I was not having any symptoms from the tick bite. In fact, I was feeling great. I had more energy, thinking clearly, and had not had to take any antibiotics in over 6 months. The only real issue I had was some stiffness in my back and maybe a little fatigue from time to time.
Another blood test was taken, and all came back negative. The enzyme count and swelling of my liver was down and back to normal levels. In general, I have just been a more happier person, and thinking much more clearly. I have been willing to take on new projects at work, and completed several projects around the house I had been putting off for years.
Not over with Zika
It is now January, 2018 I do not seem to have any side effects from the tick bite at this point, with the exception of maybe a stiff back and a lower metabolism, but this may be more Zika-like related. These symptoms are pronounced in that I have absolutely no interest in sex or matters of, and seem to be putting on weight. I just feel really fat and cannot bend over to tie my shoe laces. These symptoms came almost over night and stayed for a while. This was not that much unlike my earlier symptoms of STARI, where I was somewhat numb and stiff, but this time it was restricted to stiffness in my back and only related to my libido, along with the metabolism issue. It was like I was chemically castrated, but it also seemed to have more of a psychological aspect to it. There was no concept of sex or concern about it.
My response was that this was probably another side effect that will pass. Furthermore, unlike the STARI days, I did have the motivation to go out and run and do stuff. I would try to run at least a mile, once or twice a week, hoping to at least kept the weight gain in check. It did not help much; so, I started taking a libido enhancement drug called “Ageless Male”. I only took a half tablet a day which seemed to help. Many years ago I took this drug for a few days, but stopped, as I was concerned about muscle growth, especially with the heart and stomach. It did however address the libido and metabolism issues. Life was returning to normal again, and I am weaning my way off the libido pills.
Returning Sweats
Now late February, 2018. Lent was starting, and the flu was circulating around the office and home. On Ash Wednesday and the first Friday, I do not eat. It was usually this time of year I would have to deal with the return of STARI like symptoms, mainly grumpiness, and take an antibiotic. This year, it was the return of sweats in my sleep. I would have these real intense dreams and sweat. I have had two distinct episodes so far. I wonder if Zika is like STARI, in that it can store itself in fat cells or parts of the body, that can be exposed through fasting and weight loss. This was definitely not STARI related; although I did go through a spell of grumpiness. Anyways, that seems to be a trigger. Another theory could be that this fasting released some still remaining STARI parasites that were attacked by Zika, causing the sweats. This was not just a normal dream episode, and can even recount the details of the dream I had and waking up with damp clothes.
One thing is strange, I did not get the flu. I was sick in the fall, an wonder if it was the flu, and if I have immunity to it; but, right now, I am surrounded by a daughter, wife, and coworker who have all been really sick, and I seem to be immune.
Summary
At this point, I still have a stiff back and a bit lower metabolism that I hope will disappear over time. This being about eight months out from what I believe was a Zika infection, I know it is too soon to assume I am cured from the tick bite, and anytime I have assumed this in the past, I have had a return of symptoms. However, this is the best I have felt since the tick bite nearly 7 years ago and I've been off antibiotics for eight months now.
Perhaps a Zika infection is more noticeable when it has something to battle against, such as STARI. I do not blame the doctors for thinking I am crazy, but no one can dispute the changes in my blood tests, liver swelling going down, and then there are those who know me and witnessed the body sweats in my sleep. Furthermore, the swelling eye lids are gone, and I just seem to have a more upbeat personality.
I feel I have encountered two very misunderstood diseases, and that I am in a unique position to provide information that can help people. There is a lot of first-hand details in my story that I hope can help doctors and researchers.
[ 03-04-2018, 09:24 AM: Message edited by: stari ]
Posted by Brussels (Member # 13480) on :
Amazing story!!!!
I guess, it could be possible, that the Zika encounter changed the microbiome of your body, and that tick born infections lost somehow ground to Zika...
There are ways to test you energetically, if you don't want to spend thousands on tests. By EAV or kinesiology.
it's not a guarantee, that you'll get a 100% answer, but I find that energy tests give a much more clear view on what's going on inside the body.
For example: if you test for anti viral herbs or products, it could be that viruses are on top, bacteria are in waiting line...
It could also be that your body found a way to deal with the infection, that your immune system somehow got hang of the situation, and that your lyme then is now in dormant stage, simply.
The sweats could also be from other tick born infections, I think. Like bartonella, or babesiosis. They cause the fatigue, lack of sexual drive...
I saw a couple of documentaries about Zika in Brazil. THey are now speaking about a chronic form of Zika. It's not only the acute disease that exists...
Thank you anyway for the detailed account of your disease.
Who knows the Zika (or whatever virus you were fighting) did not activate some part of your immune system? I guess, it is also possible.
Hopefully, your symptoms will be resolved!
Posted by Lymetoo (Member # 743) on :
Very interesting. As you may have found out by now, thousands of people every year are ignored when they get a tick bite with symptoms. Infectious disease doctors are the worst.
It's also very possible that you got babesia, and not Zika. Sure would be interesting to know!!
I wish you continued success! Please stick around and share your new-found knowledge.
Posted by stari (Member # 51259) on :
quote:Originally posted by Lymetoo: Very interesting. As you may have found out by now, thousands of people every year are ignored when they get a tick bite with symptoms. Infectious disease doctors are the worst.
It's also very possible that you got babesia, and not Zika. Sure would be interesting to know!!
I wish you continued success! Please stick around and share your new-found knowledge.
I do not think it was babesia. I saw no less than 5 disease specialists and many other doctors, and taken over 100 blood tests; maybe 150 over 6 years. I am pretty sure they tested for that a few times. I am also confident it was a male lone star tick, and that I have not had any tick bites since that 2011 encounter.
My dilemma was that all the tests came back negative, but I always responded well to antibiotics. I have seen some progress made on testing or at least verifying the existence of Borrelia Lonestari, such as found here:
I am kicking myself for not taking the Zika test. Keep in mind, the media was full of reports that it is not acquired in the US at that time. My doctor was not used to seeing that kind of stuff and our hospital really did not have a test for it, i.e. the high cost of shipping it out. Four months after, I suggested I take a Zika test, and was told it was too late; not sure that is the case.
I do not think I have Chronic Zika, but do not think it has played out yet. It has only been about 7 months. Besides, I can live with an occasional heat flash, which are becoming milder compared to back in the summer and fall. To quote another Syfi series, I feel like the chick in Dark Matter with the nanites.
Regardless, of what is actually going on. I have heard that Zika can fight off some brain cancers, and I know a person who is looking into that. However, I have not heard anyone discuss the implications of Zika on someone with chronic Lyme or STARI.
You never hear about these other side effects of Zika; such as the drop in metabolism or red eyes. But the more I dug into it, the symptoms matched up. Although, I did not recall a rash, just itching. I am not opposed to taking further tests, but I feel like I have my life back.
At this point, I am trying to create awareness, and tell my story. Proven or not, it at least lays out a theory for the experts to explore.
Posted by Brussels (Member # 13480) on :
What I would be afraid, is the brain cell destruction from Zika.
I saw a one hour documentary at the labs in brazil, and the researchers showed what Zika does to brain cells: they go inside, eat the nutrients up, and the brain cells LITERALLY burst out, spreading the virus all over the body.
This happens at early age, fetus or even now, the doctors realize, it can affect babies AFTER birth.
they get regressive Zika or something like that, meaning, they are born normal, but develop Zika syndrome after a while.
Years are passing, and more cases of people with Zika, so I suppose, the medical field is learning.
If not Zika, it could be another virus, right?
Posted by stari (Member # 51259) on :
quote:Originally posted by Brussels: What I would be afraid, is the brain cell destruction from Zika.
... If not Zika, it could be another virus, right?
Thanks for the feedback. I will have to look into this more. I am pretty sure it was Zika; the red eyes, and auto immune issues were pretty drastic, and the itching was strange too. It certainly kicked the **** out of whatever was causing STARI.
As I said, my doctor blew it off, but I think I should follow up with a disease specialist. The impression I was given was that after 6 months or so, you recover from Zika - no worries.
You said something though that would confirm my theory, and a recent article I read. That is that incubating Lyme cells and possibly STARI cells, are protected by a biofilm which antibiotics cannot penetrate. The destructive nature of Zika goes after these developing cells; unfortunately, developing cells in adults too.
Sounds like I need to find someone who could test for Zika in the later stages.
Posted by Lymetoo (Member # 743) on :
FWIW... My Lyme came from a Lone Star tick .. a LONG time ago.
Posted by map1131 (Member # 2022) on :
What we have found with these combos of bacterial infections and serious viral infections is.....they tend to take turns being the king of the illnesses.
In other words, lyme dominate symptoms can suddenly bow down and then babesia symptoms take over, then all of a sudden Epstein Barr Virus is the king and running the show.
These bad guys can go dormant, only to surface again usually due to a stressor.
Also it's very typical for many Lyme & co-infection patients not to catch common cold and the flu as they used to.
We are known to celebrate when colds/flu happen to us again, because it's a sign that we are functioning pretty darn well.
I wish you better health. Don't beat yourself up about what you didn't know back then or didn't do. We've all been there, done that on some level.
You are getting an Education On The Truth About Lyme Disease.
Pam
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by map1131:
Don't beat yourself up about what you didn't know back then or didn't do. We've all been there, done that on some level.
- For sure... You have done nothing wrong. It's all good!
Posted by Brussels (Member # 13480) on :
Pam, the same way we don't know why some people do not catch lyme even when infected, on and on again, or why some people arrive to put the disease in standby forever (or practically forever)...
... we still don't know if a virus or any other pathogen may come in and fight another, as it gains the fight of colonization of the internal microbiome.
We live in an incredible homeostasis - even we, who fight chronic diseases - because we know that most PATHOGENIC bacteria, fungi, viruses, protozoans never leave the body for good: they simply go inactive, or lower their activity.
we are still alive, and that somehow proves to me that homeostasis still is present: the microbes and the immune system somehow work (defective, I agree, but we're still alive, digesting, sleeping, pooping and peeing, sweating etc).
Without the good team of microbes, that would be literally impossible.
That is why one can get Hep C again, or get Mononucleosis again, all herpes again, cyto, Borrelia again, Babesia again, Bartonella again....
If you fight relapses from lyme, you'll see that not only Borrelia comes back, but babs and bart are like champions of coming back in full activity, the same as many species of fungi/ candida.
The same way some researchers think that some forms of cancer can be put do dormant forms due to a viral infection, well, who knows that could happen to lyme??
I find the hypothesis of Stari above POSSIBLE, even though we all know that ALL PATHOGENS are still inside us, just in the backstage.
Posted by stari (Member # 51259) on :
Thank you for the links. I binge watched Zika videos last night, trying to find that documentary, and gain some more insight. I went ahead and made an appoint with my disease specialist. I am positive I had Zika; although, I saw a lot of misinformation out there. I now know why my doctor played it down. There are quite a few videos that really play down this illness as nothing but a hyped up disease for the pharmaceutical companies, and that organizations like the CDC and WHO are just making up stuff. I actually think is is quite the opposite, and that groups like the CDC are under playing the exposure in the US. As I said, I could not get tested; it is like STARI all over again, just that the symptoms are somewhat mild in comparison.
Anyway, I had been having trouble breathing, sort of short of breath. I have been trying to take deep breadths and stretch my lungs. The other day my kids were mocking me, as I started hearing heavy breathing in the back seat of the car. It was kind of funny, even my wife joined in. I have been doing it a lot. I thought it was just the metabolism issue and being out of shape; however, one of the videos associated this with Guillain-Barré syndrome (GBS). For about a month I have struggled to take a deep breath. I think I have a mild case of GBS similar to some other Zika cases. It also mentioned numbness in extremities or soreness in smaller joints. That pretty much explains the sex issue, no feeling in my you know what. I also had some soreness in my ankles, which I had written off, but now know that it was also a symptom.
Regardless. I am still thankful for getting Zika, and finally getting some relief from STARI. Unlike STARI, the Zika/GBS symptoms seem to be tapering off. I think the “Ageless Male” pills help too. We watched a “drug trial gone wrong” in a Leukemia drug trial, and one of the things they did was provide a steroid to keep the patients bodies from attacking themselves. I wonder if that is kind of what is going on with AM/GBS. Lots of questions for my disease specialist.
Thanks again.
Posted by Keebler (Member # 12673) on :
- no reply needed, just some things to consider:
Your trip to Florida . . . heat can clobbler those with TBD (tick borne disease) . . . so can more activity than usual.
TBD can clobber the autonomic nervous system in so many ways.
BABESIA? Have you ever been assessed for Babesia. So many of the symptoms attributed to the possibility of Zika are Babesia symptoms. The night sweats, the lung / breathing issues, etc.
If your red blood cells show any difficulties, that's one thing to consider as babesia really messes with RBC. Anemia another clue.
Various infections can, of course, co-exist, yet it's not clear at all if you were ever properly assessed for Babesia - and this would go beyond the test. An ILADS educated LLMD is best to assess.
The "Ageless Male" pills you take could backfire so be mindful of that. Other than the testosterone, the calcium carbonate can be problematic for anyone prone to kidneys stones.
I hope you were able to get a medical test first to assess your hormone levels to know exactly the proper balance for your body and look to a compounding pharmacy for an Rx that is made just for you. These pill mills for any kinds of sexual steroids can pose a risk for various reasons.
You also mentioned penile numbness. Could be neuropathy due to tick-borne infection connections. I hope you've discussed this with a doctor who could also assess your spine for any nerve impingement.
Back to the issues of intimacy, though, you also mention the matter of energy (if my eyes read that correctly). Please, never try to boost your levels of anything so that you have more energy for any activity.
Fatigue is the body's way of saying something is wrong. Best to attend to the causes than zoom to the moon with false booster rockets.
Adrenal support, nutritional assessment first are important to consider.
Last paragraph above, you wonder about steroids for a treatment. Steroids can have dire consequences for anyone who deals with chronic tick-borne infections.
As best I can read, for many years you had chronic symtoms and took various antibiotics that helped here and there. You may have been dealing with TBD all along but one more tick bite sank the boat.
When I say antibiotics, alone, can't treat lyme / STARI, I mean that classification of drug. While it's also vital to have combinations & rotations, antibiotics must be coupled with other classifications of Rx, to affect cystic form / biofilm.
sometimes, certain herbs can help in this regard, too.
your main treatment for STARI was IV Rocephin for 45 days (as best my eyes can find)
As the author below postulates, what is called STARI (by some doctors who don't know about lyme) can actually be lyme.
45 days' treatment - even after early bouts with other oral antibiotics - well, it's just not the right combination treatments for long enough. Though, there are some for whom a couple months' of IV Roch. gave them back their lives. Others, though, require a much more complex approach.
There is still the likelihood that whether STARI or a kind of Borrelia, it could still be in the chronic state.
Although the test for lyme was negative, lyme could still be what you were dealing with. Some experts say that STARI really is lyme, just by another name. The same treatment principles apply.
Do you recall if any Rx was used that addressed the cystic form? This would have been flagyl or similar. Antibiotics, alone, can create a chronic state for borrelia / spirochete infections.
Antibiotics, alone, can kill some of the spirochetes yet also make some burrow deeper and go into protective cystic form. Later, these can pop open and spew forth even more spirochetes.
If Babesia is on board, antibiotics can't treat that. It resembles malaria in many ways: symptoms and treatment. It's a protozoa.
It's really important to consider Babesia for so many reasons. And there are various strains, too. The Missouri strain harder, I think. And you are not that far away. Missouri ticks don't just stay in Missouri. Birds fly and ticks ride with them. -
[ 03-06-2018, 04:01 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- In future posts of yours, it would be helpful so more could read to have shorter paragraphs -- many here have trouble reading with it's more than about 3 or 4 lines in the finished text.
Breathing room for they eyes also helps the brain breathe, so to speak - so that separate thoughts can better be remembered as it's being read. -
Posted by Keebler (Member # 12673) on :
- Southern U.S. States . . . Lone Star ticks . . . in some cases, STARI is really lyme (my paraphrase)
Int J Med Sci 2013; 10(7):915-931. doi:10.7150/ijms.6273
Lyme Borreliosis in Human Patients in Florida and Georgia, USA - 2013
Kerry L. Clark1,
Abstract
Excerpt:
. . . we identified Borrelia burgdorferi sensu lato DNA in samples of blood and skin and
also in lone star ticks (Amblyomma americanum)
removed from several patients who either live in or were exposed to ticks in Florida or Georgia.
This is the first report to present combined PCR and DNA sequence evidence of infection with Lyme Borrelia spp. in human patients in the southern U.S.,
and to demonstrate that several B. burgdorferi sensu lato species may be associated with Lyme disease-like signs and symptoms in southern states.
Based on the findings of this study,
we suggest that human Lyme borreliosis occurs in Florida and Georgia, and that some cases of Lyme-like illness referred to as southern tick associated rash illness (STARI)
in the southern U.S.
may be attributable to previously undetected B. burgdorferi sensu lato infections. -
Posted by Keebler (Member # 12673) on :
- If there is any way to see an ILADS educated / minded lyme literate doctor (LLMD), I hope you might be able to do that for an assessment as to what exactly you might be dealing with - and my bet would be that babesia is very likely in this mix.
A good & true LLMD would also be open to listening to your thoughts about mosquito borne illness / Zika. I'm also certain, they would assess you for Babesia. As they should.
With all you describe, I would not be able to trust any doctor who is not truly ILADS educated in the science and structure of tick borne illness -- whether they practice with Rx mostly or with complementary methods -- I really think it's essential to have a doctor who has proper knowledge.
True, you've come a long way. Still, some of the symptoms you describe do "shout" out from your notes. Good luck as you figure out the next bridges to cross. -
Posted by Keebler (Member # 12673) on :
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
Although it seems that now you are not treating - it may be of help to consider some basic liver support such as Milk Thistle. -
Posted by Keebler (Member # 12673) on :
- And, while you sort out what to do next, also to help with your basic energy levels:
A "template" of sorts to see what kinds of combinations might be used. While this is dated, the basic idea still holds. Though there are various ILADS LLMDs who have articles / books / presentations, a good place to start is here just to get a feel for the land, so to speak:
For patients with tick-borne diseases, the path to health can be confounding. Combining integrative and conventional approaches may be the best way forward.
. . . What’s more, many of these hard-to-treat patients, like Makris, turn out to have co-infections transmitted by the same black-legged ticks that gave them Lyme — infections that don’t always respond to treatments for Lyme disease itself.
The blood parasite Babesia, for example, must be treated with antimalarial medications.
And, the co-infections Anaplasma and Ehrlichia do not respond to amoxicillin, a first-line antibiotic often used for Lyme.
Even if these and other co-infections are addressed, [Dr. H] says patients can stay sick for many reasons beyond simple infection itself. . .
5/8 of the way down:
16 Factors That Complicate Lyme Recovery . . . . -
Posted by Keebler (Member # 12673) on :
See all THREE posts here by Pamela Weintraub (who is a LL journalist who recovered from lyme - and write about her entire family dealing with it in "Cure Unknown" book )
--------
Statins? If you are taking any statin drug, some of the side effects of those can be very intense. Just good to be aware of that.
Other Rx / supplements, too, be sure you know all about all their side-effects so you can sort out symptoms.
The Grave Dangers of Statin Drugs—and the Surprising Benefits of Cholesterol
By anh-usa on July 14, 2015 -
Posted by Mashieniblick (Member # 50588) on :
Good write up. Thanks for sharing!!!
I just wanted to add that I also had a lump at the site of my tick bite that lingered. I also was either bit by a dog tick or lone star tick. I know it wasn't a black legged.
I have been treating with antibiotics and have almost fully recovered. I also believe I am / was infected with STARI and/or Master's disease.
I also believe I may have had Babesia. I never paid for the testing , but I responded well to Babesia treatments.
I am sooooo angry at the CDC / NIH / Government that does not seem to be bothered to look into the cause and treatment of these infections.
Posted by Keebler (Member # 12673) on :
- Mashieniblick,
So glad to hear that you've made such good progress.
Along the lines of your comments, I think this tick myth was started to dismiss patients. They've always irritated me.
Even with positive Bb, ehrlichia, and babesia tests, when I took those from Igenex to my MD, she said "no lyme in this state - we don't have those kinds of ticks" and would not even take my tests into her hands - would not even consider the coinfections. [Well, for the record, there were "those kinds" of ticks but they were determined to ignore them - and the patients.]
I was dismissed by this doctor and, therefore, by all who followed as my chart then was toxic - all because of the myth by the IDSA power in our state and that my symptoms were all so severe they'd "never seen anything like it."
What few at the IDSA / CDC / NIH consider is that:
Any tick can carry lyme, any of - or the full range of - infections. It's a myth that any kind of tick carries only this or that.
It depends upon where they have gotten their blood meals - and what those critters' blood carries to the ticks who dine.
And, as long as birds fly / migrate - and mice and other critters also stowaway on ocean ships, river boats or vehicles - there can never be any clear cut geographic containment for any particular tick borne infection.
Ticks catch rides on whatever critters happen along. And ticks can drop off anywhere along the way.
While I'm at it, another favorite myth of the CDC / NIH / IDSA is that an infected tick must be attached for 24, 48 or any number of hours in order to transmit disease. Detail here:
With any break of or burrowing under the skin and mouth part, introduction to blood can transmit any infections on board. And this can happen in an instant. Normally, a tick bite is not felt due to a numbing agent in the tick's saliva.
And, once bitten with infected tick, within 20 minutes, borrelia can make its way to the nervous system. -
[ 03-06-2018, 05:09 PM: Message edited by: Keebler ]
Posted by Brussels (Member # 13480) on :
Stari, just look too into babesia too.
Air hunger sounds like babesia to me too, like all others above said.
Posted by Keebler (Member # 12673) on :
- stari,
You say that lots of tests came back negative.
If you had IgG and IgM WESTERN BLOTs for lyme, did ANY bands come back positive? This matters. Even one?
If it was not IGenex labs, likely they did not test all the bands.
Were the blood samples taken early in the week and did they arrive at the testing lab the very next day? This matters.
Were the lab technicians, themselves, certified to do lyme testing? Not all are.
These failure to identify when present reasons can extend to coinfections - when tests are not done right, at the right labs, etc.
Diagnosing Lyme Disease (&/or whatever else is going on)
SEE the WESTERN BLOT EXPLANATION links here regarding lyme.
Other tick-borne infections and other chronic stealth infections discussed, too [such as: mycoplasma pneumonia, chlamydia pneumonia, EBV, HHV-6 and other herpes viruses and enterovirus, etc.]
IGenex -- see the the top testing facility regarding criteria and procedures -
Posted by Keebler (Member # 12673) on :
- stari,
Your posts had several comments about intimacy and physiological issues. Questions / concerns about the "Ageless Male" pills you take may also be addressed here.
I just happened to stumble upon this article today. While I've only glanced at it, it does not seem written for those with chronic illness. Lyme / any kind of borrelia / other TBD pose their own issues regarding the body that an ILADS LLMD is best to answer.
by Jade Teta, ND - Townsend Letter - December 2017
[Be sure to see all 3 pages] -
Posted by stari (Member # 51259) on :
Keebler, Brussels, Lymetoo,
This is going to keep me busy for a while. Tons of good information here. My antibiotic treatments were not enough; no amount of oral drugs I was given were going to have any permanent results. I am curious about the protective cystic form and what can be done about it, but I have not had any symptoms of late, and I still think it was Zika that knocked it out for now. I will also ask about the IgG and IgM WESTERN BLOTs for lyme, and if it was done by IGenex labs.
There were no tick byte incidents to justify Babesia, and I was tested for it a few times. I will ask the specialist about it and possibly another test, and I am hoping for a Zika test too. I did not get those symptoms until after being in Florida where my brother stayed after going to the Dominican Republic. Furthermore, it seems to have wiped out the STARI/Lyme for now, not sure if Babesia knocks out STARI/Lyme. I am concerned about it coming back – once bitten, twice shy. But for now, I am one happy camper, whether it be Zika or Babesia, I have relief from the tick bite and antibiotics; but looking into long term effects with these other parasites.
None of the five disease specialist doctors would recognize STARI and just referred to it as Lyme. I insist on calling it STARI, because it was a Lone Star tick, and I never tested positive for Lyme. I would be curious if anyone bitten by a Lone Star tick got a positive Lyme test; anyone? But, I am going to ask a lot of questions at my next visit about the tests taken. My issue with the CDC, is that they do not seem to track that, which I feel is a big mistake.
The symptoms between what I felt were STARI and Zika were very different.
STARI : no rem sleep; swollen eye lids, numbness all over, no head ache, in a fog, anxiety/anger issues, soar knee, unable to think strait, always relapses.
Zika : red eyes, fever, sweats mostly in early stages, later numbness constrained to private, deep sleep with wild dreams, no anxiety, soar ankles, breathing and metabolism issues, ability to think sharply, getting better over time.
I am not on any drugs right now. The sex, metabolism and breathing issues were something that happened almost overnight, were definitely neurological in some way, and seemed to be resolved with the Ageless Male pills, which I have pretty much stopped taking. Hey, I had to do something.
My takeaway from this, is that there may be other ways to attack STARI/Lyme in is cyst or bio film protected state, possibly through a drug called flagyl or similar. If I relapse again, I am all over it; although, a trip to the Caribbean sounds more fun. Seriously, many thanks for all the information.
Posted by stari (Member # 51259) on :
quote:Originally posted by Mashieniblick: I just wanted to add that I also had a lump at the site of my tick bite that lingered. I also was either bit by a dog tick or lone star tick. I know it wasn't a black legged.
I have been treating with antibiotics and have almost fully recovered. I also believe I am / was infected with STARI and/or Master's disease.
One of the things I would hear time and time again, is that STARI is not that serious and you recover from it over time. No tracking or respect from the CDC. Their map is not even accurate for Lone Star ticks.
Every time I took antibiotics, I felt great, almost healed, but it always came back. Beware of this. My litmus test was swollen eyelids and emotional issues.
I wish I knew more about these bio-film busters these folks are talking about when I kept having relapses.
Wish you well.
Posted by Lymetoo (Member # 743) on :
I got Lyme and babesia from a Lone Star tick. STARI is just another name for Lyme.
Maybe one day you will solve the puzzle, but for now you are doing so much better!!
Posted by Mashieniblick (Member # 50588) on :
To your question: "I would be curious if anyone bitten by a Lone Star tick got a positive Lyme test; anyone?"
I had 2 western blots.
Labcorp - Igg 58, 66 Present
Igenex - Igg 30+, 41+, 58++, 66+ Igm 31I, 41I
all interpretations listed as negative. Not sure if it was a dog tick or a lone star tick.
It pisses me off the CDC does nothing about it also.
Posted by Keebler (Member # 12673) on :
- It doesn't get any clearer than this: Bb has been found in lone star ticks, themselves. This is proof.
Int J Med Sci 2013; 10(7):915-931. doi:10.7150/ijms.6273
Lyme Borreliosis in Human Patients in Florida and Georgia, USA - 2013
Excerpt:
. . . we identified Borrelia burgdorferi sensu lato DNA
in samples of blood and skin and
also in lone star ticks (Amblyomma americanum) . . . . -
Posted by stari (Member # 51259) on :
quote:Originally posted by Keebler: - It doesn't get any clearer than this: Bb has been found in lone star ticks, themselves. This is proof. -
Lymetoo, Keebler,
My apologies. I have no doubt that STARI and lyme is pretty much the same thing. I have experienced this first hand. Although, I am still concerned about the testing, and getting the word out about Lone Star ticks.
One thing my specialist mentioned is that it is not hard to spot the parasite if the right sample is taken, and faults the removal of microscopes from hospitals.
I talked with my specialist about Babosia; tested a few times all negative, and he ruled it out. Had over a 100 tests over time, for many things.
Had a few lyme tests, which were IgG and IgM WESTERN BLOTs for lyme. They were NOT done by IGenix. Despite negative tests, he was still comfortable concluding it was lyme he treated me for.
He also liked the idea of using flagyl, and has had much success with it; although he says some have a hard time tolerating it. If I relapse, he will work with me on that; but I do not have any symptoms at the moment.
He was also surprised at how my liver enzymes had dropped, and did not rule out Zika. It was a significant drop after two tests. He was Ok with approving a Zika test, should there be any long term issues later found with that virus, and to try and gain answers.
Once again, thanks, and I hope those on the board here who are still suffering get some relief.
Posted by Mashieniblick (Member # 50588) on :
Keebler awesome post! You are amazing! Where do you find this stuff?
How do doctors not have access to this stuff? Or do they have access, but choose to look the other way?
Posted by Lymetoo (Member # 743) on :
NO microscopes in the hospitals?!! I can remember 13 years ago, my GP came to see me in the hospital and he made a trip to pathology to look at stuff on a microscrope. I was in there with an infection from a gallbladder surgery. So I know they had them back then.
Shocking!!
My Igenex test was not clearly positive for Lyme, but I had bands that could only be Lyme.
Posted by stari (Member # 51259) on :
quote:Originally posted by Lymetoo: NO microscopes in the hospitals?!! I can remember 13 years ago, my GP came to see me in the hospital and he made a trip to pathology to look at stuff on a microscrope.
I do not know how true that is; however, when I went to see my first disease specialist, the doctor refused to biopsy the byte area, despite there being a disconcerting lump remaining from the tick byte.
"we just do not do that anymore." was the response -- and this was a major hospital.
When I hear these things it makes me nervous. What were they going to do if they biopsied my liver; a more invasive procedure. Were they just going to run some chemical tests, or actually look at it? Thank goodness, my liver is back to normal, and I did not have to go through that. I could not get an answer.
Posted by stari (Member # 51259) on :
"A 58-year-old white woman, currently on treatment with anastrozol for a locally recurrent, hormone receptor–positive breast cancer, spent the New Year’s holiday in a coastal area of Sao Paulo State. In early January, she reported important tiredness, myalgia, headache, and retro-orbital pain. Two to 3 days later, she developed sudden episodes of high fever with intense sweating, which lasted 4 days. The patient sought medical assistance twice and was submitted to an extensive number of complementary examinations, the findings of which, besides a hemoglobin level of 10.0 g/dL (previously 13.5 g/dL), were normal. Approximately 10 days after the onset of the symptoms, the patient was referred to her oncologist in a tertiary center hospital, who noticed a mild abdominal maculopapular rash and ordered some serologic tests. Dengue virus immunoassays were negative, but indirect immunofluorescence assays for Zika virus demonstrated both immunoglobulin M (IgM) and IgG high titers. The patient is now recovered and had no neurologic symptoms.
This case illustrates some difficulties in diagnosing Zika virus infection in patients with cancer. As already highlighted in previous studies, cross-reactions with related flaviviruses are common and, unfortunately, Zika-specific tests are expensive and not widely available.1"
Posted by stari (Member # 51259) on :
Update.
I am still doing well. No return of Lyme/STARI. Nine months without any type of antibiotic. Liver is still good and seem to have energy to do stuff.
I am mildly concerned about lingering affects of Zika. I still occasionally have a very vivid dream or two, and wake up remembering details. I also feel like I had a mild relapse in eye redness and itching. I definitely feel that Zika is not something that just lasts one week or two week for everyone, as I seem to have some mild relapse of symptoms eight months after I got it. I am still trying to ramp up my metabolism, and am now playing on multiple soccer teams to get back in shape. You would think I would be in great shape, but the side effects from Zika or the follow-on Guillain-Barré syndrome really messed with my metabolism, and I am just not loosing the weight like I used to. I do not feel like there is enough attention paid to this side effect.
My Zika test for antibodies came back negative from Labcorp. Not sure I have confidence in their testing, as I know I had Zika; the symptoms were too bizarre and accurate for Zika. I did find an interesting article about a cancer patient with Zika, who also identified the same symptoms I experienced. Not too many descriptions of Zika mention the intense sweats that I experienced, but this article does. The article mentions the high costs of unreliable tests.
Another thing I found interesting, is that some state labs are offering testing, but for pregnant women only! So much for any real desire to track this thing. What upsets me is that these institutions will play down the number of infections that they are not testing for.
Anyways, with the spread of Zika, I know it is just a matter of time before we see other folks infected with Lyme have similar experiences. I am still wondering if the chronic Lyme issues I was experiencing played a role in the lingering effects of Zika, by giving it something to feed on.
I still feel blessed by my encounter with Zika.
Posted by stari (Member # 51259) on :
10 months and no recurring Lyme-like symptoms. However, I am getting some funky relapses from the Zika. Last week while on the soccer field, I took about twenty steps and about fell on my face. I had a relapse of soar ankles; they just cramped up. A week later, they are still soar, and have been taking it easy. I also still get these wild vivid dreams that I remember when I wake up. Anyways, I just think it is interesting that some of these Zika issues relapse after almost ten months. Came across a couple interesting articles:
ZIKA VIRUS MAY NOW BE TIED TO ANOTHER BRAIN DISEASE:
This last article: "Although most people make a partial or full recovery, 20% are still unable to walk at 6 months after diagnosis."
You never hear this in the news and rarely read about it. When you experience it; you know something is wrong.
Still, I will trade Lyme for Zika any day.
Posted by Lymetoo (Member # 743) on :
Hang in there .. I hope you are able to live a full life!
Posted by Brussels (Member # 13480) on :
Homeopathic medicine Eupatorium Perfoliatum can be used as prophylactic in Zika virus infection as this medicine has the closest match to the symptom set presented in Zika virus infection. (Brussels: this is what one site says; I have better information directly from Brazil, under).
(Bru: I just copy paste it here, showing that there are in fact, studies showing that ONE INFECTION can sort of cause a worsening of symptoms with another...
In this case, only antibodies, but it's interesting!) -----------------------
This is in Portuguese, but it looks like a good site for treating the symptoms you mention:
They recommend for Zika infection: Rhus toxicodendrum 6CH, 5 drops a day (best remedy against Zika according to the Abras institute).
You may add: - Urtica urens 6CH, 6 drops a day if there is itchiness somewhere - Conium maculatum 6CH specifcially for Guillain Barre' symptoms, 6 drops a day - Tuberculinum residuum 30 CH, 6 drops a day, if you have joint pain
Take these until the disease disappears.
Posted by Brussels (Member # 13480) on :
Another site proposese a mix of medicines to prevent dengue, zika and Chikungunya:
Eupatorium 5CH Gelsemium 5CH Rhus toxicodendrum 5CH China officinales 5CH Ledum 5CH Mix them all, take 4 drops 1x week, as preventative.
If someone gets sick with the disease, I would take these drops at least 3 times a day, until the symptoms disappear.
this is information from MDs, treating people in Brazil...
They recommend as above, same formula against both Dengue and Zika
Eupatorium 5CH Gelsemium 5CH (in case of Zika, take Gelsemium 30CH instead) Rhus toxicodendrum 5CH China officinales 5CH Ledum 5CH
Some doctors believe that Gelsemium is THE best remedy against the neuro symptoms caused by Zika.
Posted by stari (Member # 51259) on :
Hey guys, just want to give you an update. It has been 11 months now since I had Zika and no Lyme relapses. I really feel like it wiped out the Lyme.
I tried to contact some researchers; nobody seems interested in my story. I think that is sad, and that it is an interesting story to tell.
Anyway, the Zika side effects, which I think are from Guillain-Barré syndrome (GBS), seem to be fading. Still some ankle soreness, but nothing serious. Maybe a bit of fatigue and need for more sleep; rare mild night sweats. But when I am active, I am active.
Crazy dreams. I am enjoying dreaming again. I had dreams before, but not like this. You really do not know how sick you are and how numb I was for the past 7 years until I fully got my dream sleep back. Also very productive. I restored my old truck, patched my leaking roof, cleared the brush from my yard. These were all jobs I had been putting off since the tick byte.
This is not to brag, but give hope to those who do not see an end to lyme suffering. I recall one doctor telling me that studies were inconclusive if people can recover from the mental effects of Lyme; and am finding out that in my case at least, it is possible.
Posted by Lymetoo (Member # 743) on :
That's so wonderful! Keep it up!
Posted by Bartenderbonnie (Member # 49177) on :
Wow, so intriguing stari
Thank you so much for posting
Never stop searching for answers. You give hope to us all. 💚
Posted by Brussels (Member # 13480) on :
Wonderful, Stari!!
Posted by stari (Member # 51259) on :
quote:Originally posted by map1131: What we have found with these combos of bacterial infections and serious viral infections is.....they tend to take turns being the king of the illnesses.
In other words, lyme dominate symptoms can suddenly bow down and then babesia symptoms take over, then all of a sudden Epstein Barr Virus is the king and running the show.
These bad guys can go dormant, only to surface again usually due to a stressor.
Also it's very typical for many Lyme & co-infection patients not to catch common cold and the flu as they used to.
We are known to celebrate when colds/flu happen to us again, because it's a sign that we are functioning pretty darn well.
I wish you better health. Don't beat yourself up about what you didn't know back then or didn't do. We've all been there, done that on some level.
You are getting an Education On The Truth About Lyme Disease.
Pam
map1131, looking back this was a brilliant post, and comes from much experience. I also greatly appreciate some of the replies from Brussels as well as the others who have provided support. Just want to all to know I appreciate your support and proceeding with caution. I have tried provided details such that people know they are not alone and maybe something will be learned from my experience and learn from theirs too.
This Zika thing has kind of lingered on, something you do not hear much about; however, I am reluctant to try and treat it. I made this mistake before by possibly cutting my IV treatment short. I feel Brussels is right in that I should be cautious about Zika, and that these dreams and such could be Zika ravaging my brain. I found evidence of this in a link I posted.
Had another funky night sweat. Also, just woke up from another dream. It is kind of interesting, as I try to decipher what is real and what was a dream. It is interesting that I can remember these dreams when I wake up, and hope it is not my brain being eaten away by Zika virus... can live with it though.
But back to map1131's comment, these diseases can swap dominance. I am not sure Lyme has been completely purged from my body, but Zika is winning. I have no doubt Zika won or is winning; that is the question I now face. Lyme is a nasty nasty nasty disease that can seem to hide out from very powerful drugs for a long time if not forever. A year later, strange things are still happening. I had another funky night sweat. Is this my body fighting Zika, or my body with Zika fighting Lyme? For now I am able to live with these side effects, but I wonder, if I rushed to find a cure for the GBS/Zika, could Lyme return? Not sure I want to find out.
The reason I am posting this, is, that maybe, even with the most effective drugs, it may take a year or longer to cure Lyme – playing it cool for now.
Perhaps, with the onset of Summer, I will find another person in my situation; I cannot be the only one who has experienced or is experiencing this.
Posted by stari (Member # 51259) on :
I feel this is an important story to be told. It has been almost three years now, and I have not lyme relapses. Zika kicked the **** out of of the lyme.
Zika did have some side effects, such as mild GBS. However, even these side effects have subsided. My metabolisim is much better, and I no longer have breathing issues. I have had to work hard though; lots of exercise. I also started taking daily valtrex and Prevegen. Not sure what resulted in GBS subsiding, but it has -- for the most part. I started these because of some memory issues, but have over come them.
Considering the side effects of Lyme (STARI), I am still thankfull for Zika.