Has your Lyme/co-infections triggered other conditions?

[wonko]

I'm curious, based on some discussions in other threads, about what others have experienced in terms of Lyme/co-infections triggering other conditions, thus mandating treatment beyond just antibiotics.

It is true that many Lyme doctors encourage lifestyle changes from which most of the general population could benefit, such as dietary changes, supplements, etc.  Surely there are cases where people improve from adopting these generally wise practices alone and not from antibiotic therapy.  However, I don't think that is always the case, nor do I think that Lyme doctors are nefarious in their approach of treating the whole patient.

It has been my experience that I've collected conditions which I believe to be secondary to my Lyme disease, but which require distinct treatments from antibiotics alone.  That is, my condition is complex, and I do not think that I could be fully treated by antibiotics alone.

For example, I have adrenal insufficiency, which developed after my Lyme disease/co-infections made me very sick.  I have also developed issues such as migraine, myofascial pain syndrome (in which knots of inflamed muscle take on connective tissue characteristics), palpitations, mitral valve prolapse, some joint damage, and gluten sensitivity.

Most of these secondary conditions have been detected through standard "mainstream medicine" tests, which my Lyme doctor routinely orders to monitor my condition.  Some he treats, while for others he has suggested appropriate specialists.  

I do not think my recovery would be as successful as it is were it not for treating the issues I developed subsequent to my long-term illness with Lyme/co-infections.  The fact that I need multiple treatments to feel my best and to continue making progress does not make me doubt my diagnosis of Lyme and co.  Instead it sadly makes sense to me that if you are sick for years without treatment, then the primary illness may trigger other health complications.  

For what it's worth, I was robustly healthy before my illness.  I wasn't in great physical shape, but I was unstoppable, never felt sick or tired or weak or sensitive to anything.  No one in my immediate family has the problems that I now experience.

What do others think?  Have other people, after the onset of Lyme, experienced other conditions separate from Lyme (requiring separate treatment)?  If so, do you (or you doctor) think that the Lyme triggered the other conditions, or do you see it as more of a coincidence?

Hope all are enjoying the weekend.

[Phtartist]

I was extremely healthy until I got sick 15 years ago. Severe headaches, fatigue, muscle aches were all attributed to depression and then Fibromyalgia. I lived with this until three months ago when a new doctor tested me at a better lab than basic Health ins. labs. Lyme disease (Borrelliosis), Babesiosis, Mycoplasma was the diagnosis I have been living with all these years.
As far as secondary illnesses, during these fifteen years, I have developed severe daily migraines and other headaches (cluster and CDH), High blood pressure, Interstitial Cystitus (cleared) and IBS (cleared with diet) and finally Sjogren's Syndrome.

[wonko]

I did try NT factor a little over a year ago based on advice from someone I know with a form of chronic fatigue.  However, it didn't have any effect on me, for whatever reason.  The current low dose cortisol regime I'm on has helped tremendously, for which I'm grateful.

[ewford]

Wonko, have you checked into NT FACTOR at all for your fatigue?  Dr Nicolson told me about it in a phone call recently and it has helped alot as far as fatigue goes.  It helps hold the cells intact and keeps them from "leaking" by plugging the "holes" w/ lipids and keeping the mitochondria intact. Your cells are much likelittle batteries and when the cells get leaky, they leach energy.   Dr Nicolson is a Cellular researcher, not some fly by night used car salesman.  It was developed for chronic fatigueing illnesses such as GWI/CFS.  Just a suggestion.

  I have also been using a CPAP to force feed air at night and it has helped as well.  I don't feel exhausted as before.

If interested, google NT FACTOR w/ Prof Dr Garth Nicolson and research what this does and how it works.

[ewford]

Sigh....Gary Wormser just dosen't get IT.  We have stated over and over Lyme CAUSES these issues, not these issues are unrelated to Lyme and must be something else.   I was perfectly healthy until I became ill with this.  And I firmly believe it IS sexually transmitted.  And furthermore it wreaks havok with all internal organs (basically anywhere blood flow goes).  Wormser/Guitar thinks this is some "mystery illness".  Well, considering all my tests were negative for EVERYTHING else, and once I researched GWI/CFS and the mycoplasma/Borrelia corelation, I understood what this was.

Wormser/Nvyis basically a "troll" that for some reason does "drive by" research and ignores the HUGE mounting evidence of how this illness is portrayed.  I have stopped even reading his posts because i get the same thing when I step in my dog's feces  CRAPOLA.

A wise man one said "doing something over and over again the exact same way and expecting a different result is stupidity"  Our friend NG must be one of those repetative types...
  

[ree427]

That is a great question - I think my blood pressure became high while on treatment. I didn't think about it like that. And I know what you mean about the "thick blood". I thought I read somewhere along the way that Lyme causes thick blood, but don't quote me on this. Anyway, I am taking Benicar for my blood pressure which my Lyme doc tells me helps the antibiotics work better also. As far as my thyroid, that kept getting worse and worse until my doc said it was lower than what she would like to see it and prescribed me medication.
Hope you are enjoying your holiday weekend and feeling well.

[navyguitar]

I just wanted to add that you have seen significant improvement through cortisol treatment. Why aren't you focusing on that instead of Lyme? You have been able to work longer hours and not miss work. That sound huge to me. What has Lyme treatment done for you? That is why I made an earlier comment on whether antibiotics treatment is effecting your intake of you cortisol treatment. Basically, do the two medications cause an adverse reaction.

[navyguitar]

I think my posts directly try to answer your question. Asking a question and only wanting to hear predetermined answers will do you no good. My assertion is that maybe other things have caused your health issues. You said in your original post that you believe adrenal insufficiency was secondary to Lyme. What if Lyme was misdiagnosed and adrenal insufficiency is one of your primary health issues. That is why I brought up antibiotic use. If you have been taking them for years and your health is not improving, a normal person would call into question the three following scenarios.

A. I do not have a bacterial health issue
B. I am suffering from a different condition
C. I am resistant to my current antibiotic treatment.

It is not normal for ones body to rely on long term antibiotic treatment. Furthermore, the antibiotic treatment could be causing other health issues. Antibiotic use has been known to interact with medications and cause health issues. Therefore, my response to your question is spot on. You have to keep in mind that I am trying to help and have no bad intentions.

I can understand the reasoning behind becoming extremely defensive in regards to your perceived condition of Lyme. You went through many years without an answer. Lyme gave  you that answer. People lose sight on whether that answer is correct or not. Unfortunately, Lyme has no concrete diagnosis. This is, especially, true for chronic Lyme. Being able to give yourself and your family a reason why you haven't been able to live the life you normally could have is very satisfying. It is an emotion that one does not want to release. Why would someone want to fall back into a situation where they do not know what is causing their health issues?

I will tell you why. If it isn't Lyme, there is something out there that is decreasing your quality of life. That is why I give advice to concentrate on other issues such as adrenal insufficiency and thyroid. Many so called Lyme sufferers have other conditions but do not aggressively treat them. Instead, they spend thousands on Lyme treatment that have minimal effect on they overall health. You should not be so defensive when someone is trying to help you. Read my posts again. In no way has anyone bullied you.

[JackieCalifornia]

To respond to your original query ("I've collected conditions which I believe to be secondary to my Lyme disease, but which require distinct treatments from antibiotics alone.  That is, my condition is complex, and I do not think that I could be fully treated by antibiotics alone.") and why that situation might be, here is a tangential answer:  

I've been reading in various places (including most recently posts by Brian Fallon and others at the Columbia Lyme research facility) that point to significant variability in the nature and  virulence of different strains of B.burgdorferi AND to genetic variability in humans that affects how the immune system reacts to the complex creature that is the Lyme bacterium (and never mind co-infections).  The variability among bugs and humans creates a complex array of possible variations in the course of infection and reaction as the bugs meet the human host.  

Lyme is already a wild card, and further its ability to affect many bodily systems adds to that complexity.  Then on top of that to add variability in the human host immune defenses, and wow.  What a mess.

Therefore that the bugz are triggering an array of symptoms and responses in you seems quite in line with the aforesaid complexity.

[wonko]

Yes, the domino effect sounds about right, and I'd be interested to hear more about your research of how physical stress can trigger these problems.

I must say that I credit my LLMD for recognizing some of the separate issues affecting my health.  I think I'm the one who is guilty of blaming everything on Lyme/co-infections, while he is better at deciphering if/when/what other complications are impacting my health.  Though as you say with your doctor, nothing I've experienced falls outside of what he's seen in many other patients.

In brighter news, I've been doing notably better the best month or so since going gluten-free and adjusting my cortisol levels.  I know not that long ago I was in a bit of a low, so it feels good to come out of the other side of that.  I haven't missed a day of work in at least a month, and have been putting in a lot of ~10 hour days and working every weekend.  I also recently traveled for work and not only handled a hectic event/travel schedule, but didn't suffer any major "payback" afterwards, and after returning home in the PM I was able to go back to work the following AM.

I have recently changed my abx, as advised by my LLMD, and am experiencing some grief from that but I seem much more able to handle those effects given my overall improvement.

I know you are still patiently waiting for recent test results.  I do hope you find satisfactory answers soon.

[wonko]

Did your blood pressure get high after you got sick, or after you started treating?

My BP is ok for now, but it varies a lot, being low sometimes and boder-line high other days.  And sometimes when I'm feeling more sick, my blood feels "thick," if that makes any sense.  

I've had borderline hypothyroid test results and some Hasimoto's antibodies show up, but an endocrinologist did not feel the test results warranted treatment.  

Hope you feel well this weekend.

[wonko]

With all due respect, I'm going to echo binx's suggestion that you start a separate thread for your topic, which is a branch off of the original post.  The question I pose is directed at those with Lyme and/or co-infections and whether or not patients experience separate conditions that may have been triggered by the infections.  You were the first poster on the thread to bring up high dosage antibiotics, thus you are attacking a straw man.  (I have never taken IV antibiotics, and my Lyme doctor prescribes me low doses of oral antibiotics.)

You asked me a few other things, and just to remind you, I responded to your first post in this community with a long and detailed account of how I came down with my illness and eventually sought out an LLMD:

http://www.medhelp.org/posts/Lyme-Disease/My-recent-LLMD-appt/show/1527450

In that post, I believe I also encouraged you to follow through with mainstream medicine first and to only seek an LLMD if no other explanation for your illness became apparent, patient advice I've repeated here countless times.

You seem on a mission to educate chronic Lyme patients with the mainstream medicine point of view about our illness and its treatment, though this is only my impression of your intentions.  Speaking for myself, I am painfully aware of how unpopular my ILADS style treatment is, and I've read many of the articles that state long-term antibiotics have no benefit.  I would love to be on your side of the argument along with the bulk of peer-reviewed literature.  However, as I've stated on this board many times, I thoroughly exhausted my options with mainstream medicine and never got a satisfactory diagnosis or any treatment other than some symptom relief.  

I can't speak for all, but I do think that most Lyme patients are aware of the popular point of view that you bring up in discussions here, as many of us went through countless doctors before going to an LLMD.  

Please consider that from my point of view, your posting behavior has a bullying quality to it.  I've re-read your original response to my question several times, and don't see how it addresses my question.  Instead you tangentially stumble onto issues such as problems associated with IV antibiotics and veterinary-grade drugs, neither of which I've ever used and neither of which are mentioned in, nor related to, my posed question.  Your opinions are welcome, but sensitivity and consideration are always appreciated.

[navyguitar]

The only problem with the assertion of high levels being the cure for chronic Lyme is there is no evidence. All it would take is for a reliable study from ILAD's showing the benefit of long term high dose antibiotic use. Why haven't they done this study? There have been numerous studies concluding that long term antibiotic use has no significant effect. Ilad's relies on people stating that it helped them. That doesn't prove anything. We know how the placebo effect works. It is like those bracelets that claim they improve your balance. If you watch the videos, you will notice that the salesperson pulls the person's arm at an angle without the bracelet on. When the bracelet is worn, the salesperson pulls the arm straight down. This leaves an impression that the bracelet helps. These people are tricked into believing a piece of plastic is helping their body.

[illinwithoutacause]

navyguitar--i respect your position and your opinions about antibiotic use, and i agree that many meds can trigger all kinds of physical problems.  my father was unfortunately one of those unfortunate patients who was prescribed vioxx to relieve his unrelenting and crippling arthritis pain.  all i can say about that at this point is, God rest his soul.

basically, though, it might be helpful for you to start a new thread so we can directly address wonko's questions.

wonko--you know i'm still not diagnosed, but whatever it is that's invaded my body has affected me systemically as well.  in addition to my neurologic and pain-related symptoms, i have palpitations, my adrenals are shot, my female hormones are completely out of whack, and i'm borderline hypothyroid.  when i ticked down the list of my ailments, my LLMD just took notes and nodded.  he then told me that lyme can affect just about every system in your body and none of what i mentioned surprised him.

through some of the work i have been doing recently, i have been exposed to medical literature addressing the hypothalamus-pituitary-adrenal (HPA) axis and have been studying the impact physical stress (in our case the stress our bodies endure as a result of an insidious infection) can have on virtually every system in our body.  it's like even the smallest impact triggers one of a zillion different domino effects on a cellular level.  i am certainly no medical professional, but this explanation made sense in light of what my LLMD said.

these are just my thoughts on the matter.  i am so sorry all of this is happening to you, but i am glad to know your treatment has allowed you to recover at least some semblance of your life.  like you, prior to this illness, i was unstoppable; now i've hit a brick wall and am still in shock.  i look to your and others' recovery to give me hope.

blessings to you,
binx

[ree427]

I agree that doctors need to be careful before treating any condition including Lyme. Any doctor who wants to treat a patient without a thorough evaluation is in the wrong. From what I read, it is the high doses that are needed to be effective in eradicating the bacteria if you have had it a long time. In my opinion, the risks of leaving Lyme untreated out weigh the risks of the medications.

[navyguitar]

It is the levels of antibiotics that causes health issues. Moreover, intravenous antibiotics can cause infections. The levels prescribed by LLMD's are ridiculously high to the point it becomes dangerous. I do not see a problem with long term antibiotic use at moderate levels. Some people with acne take doxy (at low levels) for years. I don't know if they experience any adverse effects other than antibiotic resistance. A lot of people that are subjected to aggressive Lyme treatment have not been properly diagnosed. Some are even diagnosed over the phone or without a physical exam. Prescribing large amounts of antibiotics in those situations should be considered malpractice.

[ree427]

Your opinions are interesting. I can't agree with you in regards to IV antibiotics to treat Lyme. I know people who literally had their lives saved from IV antibiotics.Others could walk again after IV antibiotics. Why aren't long-term antibiotics criticized for other conditions like acne or TB? It is simply not fair. Did you ever see the side effects to some of the medications to treat symptoms like fibromyalgia? I know from experience that the side effects to attempt to cover up symptoms were far worse than from the antibiotics to treat the actual cause. People develop long-term health problems from all these drugs used in today's world. Then with more health problems comes more drugs. The pharmaceutical companies love it. I'd rather take my chances on an antibiotic anyday.

[ewford]

  Riiiight...quackwatch.  Where a post on Dr Jemsek deleted ANY and EVERY thing about this Dr that showed he is a ID dr. Very well respected, diagnosed the first AIDS case in NC before anyone knew what the hell AIDS was, and that he has been fighting constantly for changes in the treatment guidelines for lymes knowing they are ill fated and people are dying from this next epidemic.

  Wormser, are you so dense that we have tried OVER and OVER again to explain that this bacteria goes cystic when megadoses of ABX are administered for long periods.  That is why it is a LONG treatment plan.  They are working on biofilm busting agents to break down the biofilms and let the ABX be bacteriostatic, boost your immune system by healthy food and living choices, and let the Immune system kill the bacteria in its most vulnerable state.  

  Wormser, I swear you don't research, you just catch bylines and post.  BTW, the REAL science is bought and paid for by the pharma companies.  I'm sure they want a cure when they have a bonanza of medications that people have to take 3 times a day for life...instead of a LLMD treatment. RIIIIGHHHTTT

[ree427]

Yes, I agree with your statements. I developed Hypothyroidism after the onset of Lyme and now require a prescription medication for my thyroid. Also I developed high blood pressure and require a prescription for that. No one else in my family has the problems I do either. I do not see it as a coincidence.

[navyguitar]

Do you feel that the antibiotics are helping? Out health can vary from day to day. Even a single meal can change the way we feel. Moreover, antibiotic use can lead to other health issues. Lyme boards do not mention the people that get sick or develop serious health issues from intravenous antibiotic use. Some people even resort to veterinarian antibiotics and fish antibiotics. They get addicted to antibiotic use. It has to take its toll on their bodies. A lot of people think the antibiotics are helping because they feel better for a day or two. Others, feel horrible after antibiotic use and say they are herxing. There isn't a way to tell if it is working. It is my opinion, based on numerous studies, that long-term antibiotic use has no benefit. The risks far outweigh any benefit. Your body can also become resistant to antibiotics. You will suffer when you really need it. The fact that chronic Lyme people have to keep taking it for years tells me that it does not work.

Are you being treated for adrenal insufficiency? Did you check if excessive antibiotic use effects cortisol levels or treatment?


I posted a very good read in another thread (quackwatch). It has a lot of unbiased information based on REAL science.