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Early Dissemination and Waiting for LLMD

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Posted 8/10/2014 6:16 PM (GMT 0)
Hi All,
I caught my Lyme's pretty early in general. 4-5 weeks out from my vacation (and tick bite) I started taking Doxycycline 100 mg twice a day "just in case" (thank heavens to an open-minded family doctor).

I did a LOT of research and found an LLMD that is highly recommended in my area. But, he can't see me for another two weeks. I am having some neurological symptoms after having started the doxycycline.

Only after a few days, I started having tingling in my hands and feet, rashes of anxiety, numbness in my head, headache and stiffness in the back of my head, off and on beginnings of Bell's Palsy, ringing in my ear, and extreme insomnia. Those are just the neurological symptoms.

This worries me, since read on Dr. Burrascano's treatment guidelines that I should be on at least 200 mg twice a day or IV treatment. I also haven't been tested or treated for co-infections. I know time is of the essence, but there are few doctors in the area that treat this.

I want to be smart right now, but I feel I am just waiting around and feel like I should be doing more, so does anyone have any advice? I feel like I am right on the border between catching this just in time and having it do some pretty bad damage to my body.

I am now between 5 to 7 weeks out from the bite, and have been on doxy for a week and a half (and my family doctor will give me a month's worth total). Should I just calm down and wait the two weeks or should I be trying to get someone to give me more antibiotics/meds?

I have been to two Emergency Rooms this week (once for pain and pressure in left arm and chest), the second for the Bell's Palsy beginnings. Both ER doctors knew nothing about Lyme and insisted that Neurological symptoms could not be present in such an early case of Lyme (which I know is not true). The first doctor literally laughed at me for even thinking I had Lyme Disease, even though I showed him the bite and a rash.

I am scared being in an area where there are few doctors that know anything about this disease, so I am trying to research as much as possible and I welcome any advice on early treatment!

THANK YOU!!!
Posted 8/10/2014 6:31 PM (GMT 0)
There really aren't that many doctors in any area that know much about these infections. I live in Arkansas and there's not one single doctor in my state that has been trained by ILADS, and no one in my area that will treat someone if they say the word "Lyme" or if you have a positive test.

The 200 mgs a day will keep the bacteria from replicating, although it won't kill the bacteria. It's only two more weeks, and you are on something, so I would suggest that you get started detoxing and getting your diet as good as you can during this time.
Posted 8/10/2014 6:40 PM (GMT 0)
Thank you so much for this, Traveler. I have started changing my diet (my husband is making me a yummy salad as we speak), but don't know much about detoxing. I did come across some info on it, so will look it up again. In general, I am avoiding milk products/calcium (because of antibiotics), sugar, grains. Basically eating lean protein and vegetables, with some low sugar fruits.
Posted 8/10/2014 6:50 PM (GMT 0)
We have some really great suggestions in our "New to Lyme? Start here!" thread that sits at the top of the forum for detoxing as well as a ton of other good information.

This whole process can be absolutely nerve-wracking. With only a two week wait, and you are on some abx (antibiotics), try to not worry too much. You are off to a good start since you are doing a lot of research! And we are here to help you with more information and support too. :-)
Posted 8/10/2014 7:34 PM (GMT 0)
Oh, OK! I am on my way to New to Lyme?..!! Thank you so much for answers and for your support. This is pretty scary and I feel very much alone in the process. I am grateful for this forum.
Posted 8/11/2014 1:24 AM (GMT 0)
If you still have the bulls-eye rash you may want to take a picture of it, date and save it. welcome to the forum, you are on the right track!
Posted 8/11/2014 11:25 AM (GMT 0)
Also start taking a good quality probiotic like Theralac, Custom Probiotics, or VLS#3. Take 100 billion live culture count or greater.
Posted 8/11/2014 2:26 PM (GMT 0)
If I were you while waiting I would do one of two things or maybe even both (along with good diet, probiotics, detox etc..).

I would go to ebay and buy the aquatic doxy...and add in the therapeutic dose while waiting for the LLMD...provided that I knew I wasn't reacting with symptoms as side effects from the doxy.
My Dad, locally, could only get 100mg 2x's daily for his bite with rash and symptoms so that's what he did and it worked well. The aquatic doxy comes from the same generic pharma company as what we get from our human pharmacy...same markings, identical pill.

The other thing I would do is buy some Hu Zhang (my Dad added that in with the abx also).
It's an herbal antibiotic that is an excellent antimicrobial for lyme/bacterial infections and opportunistic viruses, etc. (There is a decent amount of info about it for lyme if you google it).
We buy the powdered form from Mayway (via amazon but lots of internet companies sell it). Mayway is a top company for herb testing for impurities -so personally I would only buy that one. One pound of the loose powder is only $18.00.
It will last a lonnngggg time obviously :)
My family puts it in a little water and drinks it up...the doses are suppose be titrated up fairly slowly....starting with an 1/8th teaspoon 3x's a day on up to a tablespoon 3 to 4 times daily.
There are capsules from some companies but they are waaaayyy more expensive.
Posted 8/11/2014 5:06 PM (GMT 0)
Hey...wait, you have a months worth of doxy from your regular doc right? Maybe, (again if you are sure you are not having reactions to the doxy), you could double up on what you have. That could get you through the two weeks until your llmd appointment?
If you double it up, it's possible you could start feeling better instead of worse and that would tell you a lot...
Just a thought for what it's worth. Hang in there and keep up the good work!
Posted 8/11/2014 7:32 PM (GMT 0)
Thank you so much! I spoke with the LLMD that I am going to see and he was concerned because I am a flutist and have had bell's palsy before. He said to double the dose to 200 mg twice a day. So, I took my first double dose today. But that means that I won't have enough to get me through until I see him (I got a month from my family doctor two weeks ago) and so I have to call and beg. Fortunately, I have a doctor that is very open minded. I only need a few days worth. I am getting very confused on all the things I should be doing... like when to eat in relation to the antibiotics (with or hours away from) and probiotics (same), if I can even drink milk or other calcium things mid-day or totally avoid. I have changed my diet to eliminate gluten, sugar, and milk products. Pretty much only lean protein and vegetables and fruit. I have to get all the things for detoxing. I need to figure out a routine, but the 1-3 hours before and after eating thing is confusing me with anti and pro biotics, milk (if I can), etc. Also, I do take probiotics, but they are the kind that you buy at the grocery store... I am assuming most of you would say that probably isn't good enough? I usually pop 2 of those a couple of hours after the antibiotic. This is all so scary and so confusing. Add in the fact that now he is looking at the possibility that I am not just 6 weeks out from a bite, but possibly a chronic case given my bell's palsy years ago, I am panicking. I have never had symptoms like these before! They have disrupted my entire life- I can hardly get up for very long before I am beaten down! And the night time is the worst- insomnia, anxiety and aches. I just hope it will get better after I get on some meds with the LLMD. :(
Posted 8/11/2014 7:50 PM (GMT 0)
Things should start improving soon, Dsacoda! Hang in there!!

Take your antibiotic (abx) with food. You are taking large amounts that can damage the stomach if it's not protected. Eating only slows absorption with most abx, which doesn't hurt a thing with Lyme disease.

Yes, you will want a much better probiotic. General rule is that the refrigerated ones are much better - although I prefer kefir, as they have a lot more strains of the good bacteria and have healthy yeast strains as well in it (www.culturesforhealth.com/milk-kefir-grains-composition-bacteria-yeast)

Take your probiotic 2 hours after you take your abx. This gives the abx time to get dissolved in the stomach and gone before you try to replenish the good bacteria throughout your digestive system with the probiotics.

It's best to wait 2 hours before taking any calcium containing products as well - although not all abx need to be separated from calcium. You'll have to check on that.

Don't panic about having chronic Lyme. Many people are able to put it into remission and go about their lives, although it may take longer for you to be completely rid of active symptoms depending on what all you may be dealing with. But you are not alone!!! We are here to help you find the information you need to heal.
Posted 8/11/2014 7:55 PM (GMT 0)
Watch out for most fruits, they are very high in sugars. Blueberrries and other dark berries are allowed in moderation. Green apples are oK as well.

Look on the web for the best prices on good probiotics. Plain greek Yogurt, Grapefruit Seed Extract, Grape Seed Extract, Braggs Apple Cider Vinegar and other herbals also help control candida overgrowth.
Posted 8/11/2014 10:05 PM (GMT 0)
Traveler, you are such a blessing in my life. I read part of your story on another line (can't think of the word-- darn Lyme Disease)... and you give me hope. And your words here gave me hope again.

OK, I am taking all of the information that all of you listed here. It helps greatly to know I CAN take abx with food, that way I just have to wait the two hours for the probiotic (and I will get some new probiotics).

Thank you, tickbite666, I am going to have to make a list of the things I CAN eat. So far, I am being very good- eating salmon and chicken and things like spinach and blueberries.

You are all so wonderful. Is there a place where there is a good starting diet? I am so grateful to have found you. :) :) :)
Posted 8/13/2014 12:31 AM (GMT 0)
My husband went and bought me a probiotic with 90billion... but it says men's formula... can i take that? And he got Life's Fortune multi vitamin' dietary supplement. He wasn't able to find the brands listed on this site. Are these any That he brought home any good?
Posted 8/13/2014 3:23 AM (GMT 0)
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Posted 8/13/2014 7:32 PM (GMT 0)

dsacoda said...
Traveler, you are such a blessing in my life. I read part of your story on another line (can't think of the word-- darn Lyme Disease)... and you give me hope. And your words here gave me hope again.

OK, I am taking all of the information that all of you listed here. It helps greatly to know I CAN take abx with food, that way I just have to wait the two hours for the probiotic (and I will get some new probiotics).

Awww, thank you, Dsacoda!!! We are so glad that you chose to join us!! The more the merrier, you know! giggle! turn Seriously, well, a little more seriously anyway - the more members we have posting the better this forum is! The research into these infections is so little that we need as much help as we can get, and by other sharing their experiences, we can help each other find the way to healing.

The probiotic is good to start with, was it one of the refrigerated ones? Check to be sure that it doesn't have anything else added to it - no need for you to be taking some hormone or other thing meant for men!! LOL! Same thing with the multi-vitamin.

And don't worry about not being able to think of the right word while you are on this site - we can all most certainly understand!! And we will do our best to understand you anyway! wink
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