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New here. Odd symptoms. Cd be Lyme?

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Posted 1/4/2014 11:15 PM (GMT 0)
THree years ago, I had a tick bite with the bullseye-shaped rash. I've had a few tick bites every year since then but no more rashes or sick symptoms. However, I'm having a joint throbbing problem, and I'm trying to find out what it is.

I'm 46 and mostly healthy. I eat healthy food, live on a small farm in the country, married w/5 kids, etc. All's good.

But every so often, maybe 6 weeks or 2 months?, I start to ache all over. It starts with my thumbs and wrists, then my knees & fingers. When I try to pick up something, the act of gripping the item makes my fingers and hands just ache. And then, I'm not sure why, it seems to resolve on its own.

I'm gluten-sensitive, so for about a year, I've attributed these joint pains to that, thinking that perhaps I'd gotten glutened somewhere, somehow. But this week, these last 6 days, I've been at home eating my own good food that makes me feel great most of the time.

The questions: could this be Lyme? could I get a test that would show what's going on? what could I do in the meantime for the aches?
Posted 1/5/2014 9:50 PM (GMT 0)
Hi MamaV,
Welcome to our community!! I'm so glad that you found us!!

It's actually common for Lyme disease symptoms to come and go as you describe. Did you ever have treatment after seeing that Bulls eye rash? That's the skin form of Lyme disease, so if you've never had the proper treatment, then there's no need for any testing for Lyme disease. The blood tests for Lyme disease leave a lot to be desired too, as the bacteria can change so that the immune system doesn't recognize it as an intruder and so there are no antibodies being made, and most of the blood tests are antibody tests, among other issues.

In my opinion, a treatment challenge is one of the best tests for Lyme disease. If you start a treatment protocol for Lyme and if you either feel worse immediately - but not an allergic reaction - or if you feel better for the 1st few weeks then feel worse, that's confirms a Jarrisch-Herxheimer reaction - or a "herx". There are only a few things that will respond in this manner, Lyme disease being one.

There are other infections that are usually passed with the Lyme disease that you will need to watch for, but the blood tests for those are worse than they are for Lyme disease. The best way to determine what infections you may be dealing with are to go by your symptoms. We have a good list of basic symptoms in the "New to Lyme? Start here!" thread, as well as a ton of other helpful information. If you haven't gone through it yet, it would be very helpful if you did.

Since your body has obviously been trying to deal with these Lyme bacteria, I would suggest that you take a look in our "New to Lyme?" thread as we have some really easy and wonderful detoxing instructions there that help almost everyone. As the bacteria die, they leave behind toxins, and our bodies have a tendency to have issues detoxing these very well. It's these toxins that drive your symptoms.

I would also encourage you to locate a LLMD (Lyme Literate Medical Doctor) or a LLND (Lyme Literate Naturopathic Doctor) or a very knowledgeable Holistic doctor of some sort and be evaluated and get proper treatments. We can also likely help you locate a doctor near you if you would like.
Posted 1/5/2014 10:40 PM (GMT 0)
A lot of people think Lyme is rare, and uncommon. Yet actually it is the exact opposite of what people think. It is super common, easy to acquire without even knowing you acquired it, and hard to diagnose. You are one of the 30% of Lyme casese that got a bulls eye rash--most people don't even get that symptom. Most doctors would never expect it would be Lyme, and most doctors would prefer to treat anything else but Lyme. That is why you should see any LLMD or LLND. They will get it right away. Knowing all I know now, I would be surprised if you most people don't get lyme at least once in their lifetime. It is that common.
Posted 1/6/2014 12:56 AM (GMT 0)

Traveler said...
Hi MamaV,
Welcome to our community!! I'm so glad that you found us!!

It's actually common for Lyme disease symptoms to come and go as you describe. Did you ever have treatment after seeing that Bulls eye rash? That's the skin form of Lyme disease, so if you've never had the proper treatment, then there's no need for any testing for Lyme disease. The blood tests for Lyme disease leave a lot to be desired too, as the bacteria can change so that the immune system doesn't recognize it as an intruder and so there are no antibodies being made, and most of the blood tests are antibody tests, among other issues.


When I had the rash, I believe 6 yrs ago, I went to the dermatologist. He took a photo but just shook his head & said we don't have Lyme in our area. Ha. He said to see my GP if I wanted to investigate further. [As an aside, WHY is this?? Who is saying Lyme's not in our area? I had the rash. Kinda obvious proof.] I did take maybe 20 days of doxycycline. Can't remember where I got it, but a Lyme friend told me to do it. Shortly before the end of the 21-day treatment, I started to itch LIKE CRAZY. Just on my hands & feet. Only rubbing them with an ice cube would help. I couldn't sleep or do anything but scratch. So I stopped the meds. Since then, I've said I'm allergic to doxy and don't want to take it again.

Traveler said...

I would also encourage you to locate a LLMD (Lyme Literate Medical Doctor) or a LLND (Lyme Literate Naturopathic Doctor) or a very knowledgeable Holistic doctor of some sort and be evaluated and get proper treatments. We can also likely help you locate a doctor near you if you would like.


I'm in the Chapel Hill/Durham area in NC. I'm hoping to see Dr. F. Is there any info on her? Or is another doc recommended?

Post Edited By Moderator (Traveler) : 1/6/2014 1:23:55 PM (GMT-7)

Posted 1/6/2014 8:52 PM (GMT 0)
First of all, I want to let you know why I edited your post - we aren't allowed to share doctors names and contact info on this site - Admin says. Also we need to protect our doctors that are willing to treat us, as they are persecuted and many have had their license suspended or lost their license to practice, losing their practice as well.

This actually leads me right into why doc's claim that Lyme doesn't even exist in their state - the political battle over who's right -IDSA or ILADS - and "control" over treatment guidelines has left many patients very ill with no doctors to treat them, having to travel many hours to see a doctor that will treat them, seeking treatment with a holistic doctor (they aren't regulated the same), or having to treat themselves using naturals therapies. Many don't even know that they have something that's treatable - which is why we are here.

I actually had never heard of that doc (although that doesn't mean too much!), so I now have their info in my list of doc's - thank you!! Please do go and let us know what you think!! If at any time you wish to switch doctors, let us know. Hopefully we can help you find one close to you.

Having been infected for as long as you have without treatments, you may find that antibiotics alone won't work for you though. Don't think there's no answers though!! Many here use herbs with their abx and are healing well, or have switched over to all natural medicine and are healing well. The choice is yours.

Have you read through the thread that sits at the top of the forum, titled: "New to Lyme? Start here!" yet? If not, please do!! :-) It's packed full of important information that you will want to refer back to many times as you heal. Things like detoxing instructions (very necessary), symptoms lists (as Lyme is rarely the only infection passed at the time), questions you can ask any doctor that you are seeking treatment from and helpful links and pdf's. I would highly recommend that you take a good look at Dr. Joseph Burrascano's "Advanced Topics in Lyme Disease" (link in the "New to Lyme?" thread) as it's well written and easy to follow. It explains a whole lot too!!

It's likely a good thing that you stopped the Doxy with your hands and feet itching like that! You may have developed an allergic reaction to it!

Keep reading and keep asking those questions!! That's how you will learn how to heal from these infections!
Posted 1/6/2014 11:58 PM (GMT 0)
I'm glad you removed the doc's name. I had no idea they needed protection. How can I find a good doc's name in my area if we can't use names? I called this Dr. F 2x today, finally leaving a message, so I'm not quite sure she's in practice.

Yes, I've read the entire New to Lyme section. It's sobering.

Do you think my reaction to the doxy was more likely a here or an allergic reaction?

Traveler said...
First of all, I want to let you know why I edited your post - we aren't allowed to share doctors names and contact info on this site - Admin says. Also we need to protect our doctors that are willing to treat us, as they are persecuted and many have had their license suspended or lost their license to practice, losing their practice as well.

This actually leads me right into why doc's claim that Lyme doesn't even exist in their state - the political battle over who's right -IDSA or ILADS - and "control" over treatment guidelines has left many patients very ill with no doctors to treat them, having to travel many hours to see a doctor that will treat them, seeking treatment with a holistic doctor (they aren't regulated the same), or having to treat themselves using naturals therapies. Many don't even know that they have something that's treatable - which is why we are here.

I actually had never heard of that doc (although that doesn't mean too much!), so I now have their info in my list of doc's - thank you!! Please do go and let us know what you think!! If at any time you wish to switch doctors, let us know. Hopefully we can help you find one close to you.

Having been infected for as long as you have without treatments, you may find that antibiotics alone won't work for you though. Don't think there's no answers though!! Many here use herbs with their abx and are healing well, or have switched over to all natural medicine and are healing well. The choice is yours.

Have you read through the thread that sits at the top of the forum, titled: "New to Lyme? Start here!" yet? If not, please do!! :-) It's packed full of important information that you will want to refer back to many times as you heal. Things like detoxing instructions (very necessary), symptoms lists (as Lyme is rarely the only infection passed at the time), questions you can ask any doctor that you are seeking treatment from and helpful links and pdf's. I would highly recommend that you take a good look at Dr. Joseph Burrascano's "Advanced Topics in Lyme Disease" (link in the "New to Lyme?" thread) as it's well written and easy to follow. It explains a whole lot too!!

It's likely a good thing that you stopped the Doxy with your hands and feet itching like that! You may have developed an allergic reaction to it!

Keep reading and keep asking those questions!! That's how you will learn how to heal from these infections!

Posted 1/7/2014 1:35 AM (GMT 0)
Hi MamaV I live on a small farm in the country and last summer fell very ill with chronic lyme. Never had the rash or found the tick. One of the baby foals born here almost died from a tick borne illness. Its everywhere. I highly suggest you connect with a Lyme literate medical doctor. Best.
Posted 1/7/2014 5:34 PM (GMT 0)
LOL! Yes, it is sobering to read all of that! But one can never have too much information - even if it leads to information overload - at least we can go back and find what pertains to us at any given time.

We do have to keep our doctors almost secret - which goes against my grain - but I understand that we have to protect them until the laws change. Here is how we suggest most people find a LLMD near them:

Start a new thread titled something like:"Looking for LLMD/LLND​​
in the _______ area." Although 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 email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also 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

I have no idea how most member get the best referrals, but I would use all of the above suggestions then see who seems to "fit" best.

And never forget - you are part of this 'community' and you can ask all the questions you have here!! We may or may not have the answer, but we will certainly do our best to help you find them! smilewinkgrin
Posted 1/7/2014 5:47 PM (GMT 0)
Oops - forgot to answer about the itching!! Personally, I would lean towards an allergic reaction to the abx - simply because I believe you can never be "too safe" when dealing with them. The are very high powered at the doses that are required to combat these infections, and have the potential to do great harm if not used just right.

If you feel like it may have been a herx and not an allergic reaction, then I would suggest that you talk this over with your doc - maybe take another dose while there in their office - in case you have a severe reaction this time. I would NOT suggest that you take another dose while at home though.
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