New to Site - Please Help

The major headaches, dizziness, and increased brain fog seem to be neuro in nature, so it is good that you are on Minocycline since it crosses the brain barrier easily. You might want to talk to your doctor about lowering the dosage to see if the symptoms subside. Since you have been infected for a long time, the symptoms that you are experiencing might also be from all of the toxins that the dead bacteria are producing. Lowering the dosage might help with this and so will detoxing.

Also, it is recommended that Minocycline be prescribed with a second antibiotic to complement it.

When I called the dr about the side effects, his nurse just said stop taking the abx altogether. They wouldn't see me again until 2/11. I don't know what to do right now. Keep plowing through or stop altogether. I've been drinking lots of water and cutting out most sugars, carbs and caffeine.

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

Unfortunately, as some other members have already said, ID docs really don't know what they are talking about when it comes to tick-borne infections. All they know is to recite what their society (IDSA) tells them to say (and I'll be nice and not say any more than that). You really need to see a LLMD (Lyme Literate Medical Doctor) that has had training from ILADS (International Lyme and Associated Diseases Society). I'll list the ways to get referrals for LLMD's at the end of this post - there's a few other things I'd like to say first.

You have two bands on your tests that are specific for Lyme disease - bands 23 and 66 - and there's only one way to get them inside of you and that's to have the Lyme bacteria inside of you. So, despite what that ID doc said, you do have Lyme, with possible co-infections.

You really do sound like you are herxing - which is a reaction (and a nasty one at that!) to the toxins being released as the bacteria die. You should start slowly, but start now with detoxing. We have a really good post about detoxing in our "New to Lyme? Start here!" thread that sits at the top of the forum. I would greatly encourage you to read through the entire thread though, as it's got a ton of important information in it!

If you aren't having a lot of trouble with muscle cramps, spasms, or twitches, you should also add lemon to your water. This helps push the body into an alkaline state. Bacteria and viruses not only love acidic bodies, but can actually help keep them acidic.

I would encourage you to cut out all sugar, except all natural sweeteners like stevia or xylitol. Not only do bacteria feed on sugars, but so does Candida, which you will have to protect yourself from as well. I would suggest that you get started on high quality probiotics right away. They will be found in the refrigerated sections of health food stores and a few select grocery stores. You can also use kefir, a probiotic drink. You will need to be sure to get at least 30,000 - 50,000 units of probiotics a day.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can 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

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Also, I do have a small number of referrals I can share with you if you would send me an email (by clicking on my name or the little blue envelope under my name) and please include your user name and the area in which you wish to find a LLMD/LLND.

I was under the impression I would have to take the abx for 2 straight weeks. Can you take a break after only one week? My headaches are excruciating!

I'm new as well and have read new to Lyme Disease and many of the other discussions on this site. here's my story: I've had many symptoms for a very long time. I was in Lyme tick areas multiply times between 10-15 years ago. Recently the top symptoms listed below sent me to the family doctor finally

one hive appears approx every three-four days either on my arms, breast, or neck area began Dec 23
stiff neck (one side only)
tingling and numbness in arms and hands during the sleeping hours mainly
left arm muscle aches
blurry vision-do wear contact mainly
black floaters in the eyes
bright light flashes in the eyes
tingling/vibration feeling mainly in the left hip area
frozen shoulder-therapy and physical training helped
foot pain, numbness, stabbing pain-so far 2 cortisone shots in right foot-diagnosed planter fasciitis
pelvic pressure-had UTI once-treated with antibiotics
frequent urination-always feels like I have to go
dry almost like swollen vaginal area
loss of sex drive
motion sickness-mainly in vehicle unless I'm driving
right eye lid droops-didn't use to
severe head aches mainly in the eye area
may 2013 rash under both breast all way across body-diagnosed eptopic yeast infection
fatigue constantly
difficulty sleeping-restless toss and turn a lot
enlarged thyroid-checked said it was normal just large
light headed-stress test with cardiologist everything normal

I had the Lyme Disease test done jan 23 at local hospital (not by Igenex) here's my results
iggp66 absent
iggp58 absent
iggp45 absent
iggp41 absent
iggp39 absent
iggp30 absent
iggp28 absent
iggp23 present*
iggp18 absent
lygintrp negative

positive: 5 of the following Borrelia-specific

bands:

18, 23, 28, 30, 39, 41, 45, 58, 66, and 93

negative; no bands or banding patterns which do not meet positive criteria

iggp41 absent
igmp39 absent
iggp23 absent
lymintrp negative

Family doctor didn't know how to read the test so he referred me to infectious disease doctor. He called family doctor back said no need to see me it wasn't Lyme disease. Visited family doctor again feb 4, 2013 and I'm being referred to a much larger city with a huge infectious disease clinic. Waiting for the appointment to be made.

Sorry the post is long but wanted to lay it out there. Any thoughts???

Traveler,
Thank you for the reply, I was hoping to hear from you. You have many post, questions, and answers for folks on here and seem very knowledgeable on this subject, I appreciate your time.

The hospital that has the ID Clinic list Lyme Disease and Cross Infection Diseases as a condition they treat. I will call and confirm this tomorrow though because I don't want to waste any more time I want to know what's wrong for sure.

If I do have Lyme Disease I am more than likely in the late stages. In your years of experience do you think this is what it could be? I've had some of the symptoms for a very long time but others have just started. The latest symptoms are the swelling of the hands and numbness in them and the arms at night. The floaters and flashes of light in my eyes. The one hive that has been arriving about every 3-5 days since Dec 23, 2013. It's weird I generally only get one at a time. Several times I've gotten two at a time. It itches, and is about the size of a quarter, the center will be raised a little, it has fever but it doesn't hurt. The other symptom lately has been the tingling/vibration in the hip area.

Traveler,

I'm still waiting on a call to see "if" they will accept me as a patient (they have my referral now), I'm hoping to hear something before the weekend. I've been working on finding a LLMD near us though as you suggested just in case. I will reach out on this site to locate one if needed.

I did read the entire new to Lyme thread, as I've read many of the other threads just trying to gain as much knowledge as possible so I know what I'm up against and what I need to be asking the doctors.

I do have a log of ailments, rashes (size relationship and location), and dates of the happenings. I figure that's the only way I'm going to be taken seriously. I can see this is going to be a long process of just trying to get in to see someone who understands Lyme Disease.

I'm keeping a positive attitude about the whole thing. I figure I've had it for a long time and it's not going away anytime soon so I'm going to learn as much as I can about it. I have a great family that supports me and that right there is a huge help.

I know what you mean about good days and bad days.

I have a list of my ailments, questions, and pictures ready to go when I find a competent doctor.

Thanks again for your input it makes it easier knowing there's others out there going through the same thing and they're not afraid to share their experiences.

Hi Pelagiaeast!
Ugh! I hate it when they use blocks so that it's hard to link to a site!! I'm not sure who does it, but dang it!!!

But!! I fixed that link and here it is again:
www.tbijournal.com/default.aspx

Ha! Fooled them!! Giggle!
I hope it really helps you!