Could it be lyme?

Hi seanob!

Our awesome moderators will be along very soon to officially welcome you and share important info.

But I just wanted to say hi --I have a few thoughts about your post & question.

First, I'm sorry about the CFS - that's a tough set of symptoms to manage. Luckily you don't have the full gamut of lyme & co symptoms. Here is my opinion about CFS -

Chronic Fatigue Syndrome is a name given to a group of symptoms for which the medical industry can't identify a cause. So, really, it's not a diagnosis but a name for the symptoms that you're experiencing. Sometimes, it's helpful to have a name (can sometimes validate the condition and other times it helps treat the symptoms).

With the case of fibromyalgia, understanding the condition helped fund and create drugs to address the symptoms (sometimes - fibro drugs are woefully ineffective).

But none of this helps us understand the cause of the symptoms, which is necessary in order to eliminate them or more successfully address them. And it's at this root cause that we become healthier. For some of us, treating the symptoms for years on end actually allows the root cause to create unmitigated damage and only makes us worse.

CFS has been tied to viral loads and bacteria loads. I don't think MDs always check for this or understand how to treat regardless of tests that don't always indicate infections. I have struggled with Epstein Barr Virus (EBV) my whole life but it has only been treated when blood tests confirmed mono (which I've had countless times throughout my teens through 30s.) Both EBV (and other viruses) and CFS produce the same symptoms so I was consistently dx with CFS, ME, Fibro, rather than checking for viral loads or lyme & co, for that matter.

If you haven't had viral loads checked, this is the first stop. Viruses don't go away from treatment - they're either active or dormant. The key is to get them dormant. I have been on antiviral Rx for awhile but they are hard on the liver (although I keep my liver enzymes low with milk thistle seed and burdock root). But I'm slowly transitioning to an herbal antiviral Beyond Balance IMN-V-II. Based on my history, I'll likely need to be on it during my lyme & co treatment to lessen the load on my immune system. Maybe even beyond.

Also - I would not assume lyme can't be transmitted via dog saliva--there just isn't enough known about it at this time.

Also - I don't know if the twitching is a big concern for you or if you mentioned it because of your question about lyme & co. But if it is an issue it can be caused by a magnesium imbalance or a nerve dysfunction and even heavy metals (from the amalgams). There are several remedies you can try to see if they have an impact. If you don't get specific suggestions on this thread I'd post a new thread asking specifically for input on those symptoms.

Hope this helps -

-p

Hi Seanob!
Welcome to our community! I'm so glad you found us.

There is an over abundance of misleading and incorrect information out there about Lyme and the infections that often accompany it. You literally have to know the author of articles and know where they stand on the subject to know if it's reliable information or not.

Since CFS has no known cause, then it leaves it open to being caused by infections - such as Lyme. I've had the diagnosis of CFS and Fibro since they first came into being - yet it was Lyme and the other infections the whole time, because once I treated for those infections, all of my symptoms were gone.

You should also know that the testing for Lyme and the other tick-borne infections is very faulty - there are many false negatives, which is why you can find many scientific articles talking about "seronegative Lyme". Those are people, like me, that have Lyme but can't test positive for it with the tests that are available at this time. Why? That's because these tests were originally meant to track theses diseases, not diagnose them. They rely on the immune system, that's inhibited (lowered) by Lyme, to produce antibodies - which in many cases, won't happen. These tests often miss the majority of people that actually have these infections. The Elisa or IFA can miss up to 70% of those tested, and the Western Blot can miss up to 50% of those tested. Many states have passed laws stating that a doctor is bound by law to explain this to patients because so many aren't being told that they could still have Lyme disease or any of the other infections.

So it requires a clinical diagnosis which is by symptoms. With CFS, you have to count your CFS symptoms as possible Lyme symptoms, and then any others that you see. We have an extensive symptom list for Lyme in our "New to Lyme? Start here!" thread, called the "Master Symptom List for Lyme". I would encourage you to go through that very carefully and list all of your symptoms. Or you can take this simply quiz, designed by a very good and world renown Lyme doctor (Dr. Richard Horowitz):
lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

There are many, many different avenues of disease transmission as they have found Lyme bacteria in saliva, tears, male and female sexual secretions as well as blood - we just don't know what will allow the bacteria to be pass and allow it to survive enough to infect others yet.

As for you not having certain symptoms, that's an outdated thought. Lyme can manifest as purely psychological symptoms, purely in the joints, purely as emotional issues or with only a few symptoms, so there really is no "I don't have the right symptoms to have Lyme" - especially when a person realizes that there are many, many more infections besides Lyme that is passed. I would highly suggest that you be checked out by an ILADS trained doctor.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And a new resourcewww.LymeDoc.org


​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php

If what I said about CFS was upsetting to you, I'm so very sorry - that was not my intention and I apologize. It's just that many of us (including me) have been misdiagnosed with that for many years instead of getting the proper diagnosis.

What we are most concerned about is that you may have Lyme, not when you got it or how. Lyme has been proven to be carried by many insects - mosquitoes, sand flies, horse flies, deer flies, and even spiders and ants.

The sudden onset of symptoms could have just been from any stress, especially if you do have Lyme since it's very common for Lyme and the other infections symptoms to increase with any kind of stress on the body. Muscle issues are also a common thing for Lyme, as you likely know.

I thank you for your concerns about your partner - this is a large concern as there are often complete families have Lyme. This may be from it being passed from one member to another or because they frequent the same areas. But none the less, you're right to be concerned.

There is a Lyme support group in Ireland that you can contact for support and help:
www.ticktalkireland.org/

Which is why I apologized as I thought I had offended you. Again, I do apologize, that was not my intention. I am only hoping to be of help here. I did list an organization that is based in Ireland so you can get some more local help.

Could Lyme be caused by a dog bite? Yes. Could the twitching be caused by Lyme? Yes. Can it be passed on to others that you are interacting with closely? Yes. All of this can be proven scientifically.

Hi seanob -

Just to add to Traveler's comments, as I agree with them:

Many lymees have no recollection from a bite. Upon biting, the ticks inject a numbing component through their saliva, so most people don't feel a bite. Some never see it, some are bitten by a nymph which is the size of a poppy seed--easily missed... there are many other ways of contracting the lyme & coinfections bacteria so just keep an open mind about that, including the dog saliva (assuming the dog's teeth didn't break your skin).

Unfortunately, MOST people who were bitten do not produce the erythema migrans (bullets eye) rash, despite common misinformation that suggests most people do - that is not true. The EM rash is the only absolute sign of the lyme bacteria, other than testing protocols, which produce more false negatives than not.

After the amount of research I've done over the past couple of years, I'm strongly leaning toward a few expert's opinions that most people carry the lyme bacteria but were healthy enough at the time of contraction that their immune systems dominated the infection and the infection lies dormant. And they remain healthy and asymptomatic... until they don't.

Sometimes the lyme or coinfection bacteria come out of a dormant stage because the immune system gets overwhelmed by some factor:
- a physical (surgery, car accident, injury) or
- physiological (come in contact with another illness, repetitive lack of sleep or nutrients, food-born illness, hormonal imbalance)
- or psychological (stress, death in the family, new job, relocation, end of relationship)

... or in other words, an impact on the body that causes stress or overwhelms the system. For many of us, this is when the obvious lyme symptoms start to unfold (sometimes slowly, one by one, sometimes grouped) that then tell us that lyme or coinfections are present.

So, the CFS is indicative of some presence of something in your body that is challenging your immune system. The dog bite could be a catalyst for more symptoms of whatever that burden is to unfold. It could also be totally unrelated. It could be lyme or coinfections. You don't have enough info to go by.

But Traveler and I are hoping to provide you with a clearer picture of how most people end up leaning towards lyme in order to fill in the blanks towards a more specific diagnosis whether it has anything to do with lyme or not. Lyme might not be your issue at all, but knowing the full picture of lyme might help eliminate it and move on to other possibilities.

-p

My CFS was not caused by lyme. It began after getting amalgam fillings, and having my teeth bleached which increases the amount of mercury exposure from amalgams.

I know for a fact it was not lyme. My concern is not about my CFS. It was about my twitching that started after a dog bite, and whether or not a dog bite could transmit lyme if the dog had lyme disease (which I have no idea if he does or not).

Traveler said...
I won't post any more comments, as I only seem to offend you, when in reality, I only wish to help educate you. Here is some of the information you are asking about.

The difference between local labs such as Lapcorp and IgeneX is this:

Local labs make there lyme probes using rabbit antigens from 2 strains of Lyme.

IgeneX uses samples from human lyme patients from all over the United States and Europe and from patients who had early, middle and late stage lyme.

Also, when a western blot is done there is an acidic gel that is used to separate out the bands. Most labs use a 10% gel. IgeneX uses a 12.5% gel so they get better separation of the bands.

Information about transmission other than through the bite of an insect:

www.lymedisease.org.au/transmission/

/www.lymedisease.org/lyme-sexual-transmission-2/

mom.me/pets/dogs/19955-diseases-dogs-can-pass-their-owners/

/rewire.news/article/2014/01/31/study-suggests-lyme-disease-sexually-transmitted/

www.medicaldaily.com/lyme-disease-contagious-clues-hint-it-may-be-sexually-transmitted-disease-267964

The link you listed for transmission through dogs specifically states we cannot contract it from dogs, but only from ticks on a dog. So that doesn't account for my dog bite.

Moreover - like I said before, you didn't offend me. I'm just correcting your assumptions that lyme caused my CFS. I'm telling you quite confidently it did not. I also tried to tell you that it was not my concern about CFS, I'm dealing with that side of things myself.

My concern was about newly developed muscle twitching. You stated that there's evidence that I could contract lyme from a dog bite, but you have yet to provide me with that evidence.

I'll just get tested. I actually have a pack from igenex I ordered a few months ago, but I don't have the money at present for their testing. I'll probably just do it with them, but it's difficult to intepret their results. One doctor to the next will say it's positive or negative. That's the problem :\

seanob -

I think it's a good idea to get tested as a first step towards discovery. As you already know, the tests are not accurate--but they are skewed toward false negatives, not false positives. You stated that it seems to you that everyone tests positive with IGeneX - but actually the opposite is true.

The typical Western Blot tests (including IGeneX) are serology tests. They are looking for a specific immune response. Lyme bacteria are notorious for weakening the immune system, plus the ticks often carry multiple other "coinfections" or bacterial, fungal, viral microbes that also challenge the immune system. As mentioned, the current state of the body can make a huge impact on the immune system's load (which is why your CFS status IS absolutely a factor in your immune system's ability to manage new infections.) So, these are reasons why many people don't produce enough antibodies for the tests to pick up.

There are other reasons for the false negatives the tests create - there are more strains of lyme than the tests are designed to pick up, for instance. The interpretation of the tests are somewhat controversial in the conventional medicine world, which also leads to many false test interpretations. And there is a history of vaccines developed that produce band reactions similar to the lyme infection, so the interpretation protocol has had to adjust for those issues, which also skews the end result for people towards false negatives.

So it's good to be tested but it's not a definitive way to diagnose lyme & company. This needs to be done by a lyme specialist who can take your medical history and symptom history into account.

But a test is a good place to start and if you do decide to test, many people have success by helping your immune system function a little better by "provoking" a higher immune response to the lyme DNA, and therefore the tests have a better chance of picking up a higher volume of antibodies. You can do this by taking olive leaf extract for 3-4 wks before you test. If you do a search on this forum for "provoking" you'll find more info.

Yes - different MDs interpret the tests differently and that is often more of an issue with a lack of knowledge of lyme (which is why it's highly recommended that diagnosis is in concert with a clinical evaluation by a lyme specialist). However, we can also help you interpret tests here, if you like. The test will indicate which bands of lyme DNA your body has produced a response to and these bands all have significant meaning.

Hope this is helpful. Again, in order to definitively determine if you have lyme and/or coinfections, it's best to learn as much as you can about the condition and symptoms to help you understand the full context of the infections and their impacts on the body, what the tests DO and CAN'T tell us, etc... Unfortunately.... very unfortunately, it is a complex puzzle to solve.

Hope this is helpful - it's tough to effectively answer questions sometimes because as you pointed out, we don't know what you do or don't know or have experience with or much at all about your background. So a conversation and back-and-forth questions or comments are a little time-consuming but good in the end. And they also help others who are reading to fill in information they are missing and prompt them to ask questions, too.

One thing we have learned is everyone's journey is different and sometimes it takes awhile to get to the root of the information you need. So bear with our questions and suggestions.

-p

seanob - You mentioned that the Magnesium supplements weren't helping the muscle twitching.
It never helped mine either.

My twitches are most likely due to nerve issues...and the magnesium doesnt touch it.

What worked for me is treating the infection.

Testing positive - even with using Igenex positive results are not often the outcome. Quite the opposite as Pirouette already mentioned.

And I just wanted to mention that I never saw a tick on me ...never got a bullseye rash....the sneaky little bigger was probably on the back of my neck under my hair....OR my husband passed it on to me..
This is common - many people don't know exactly when/how they were infected...

Seanob, I am not sure what could have caused your twitches, Vitamin D is what a doctor told me to take for twitches and it has seemed to help some. I also take magnesium