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FINALLY Have and Answer...Lyme it is!

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Posted 1/2/2011 3:04 AM (GMT 0)
Hello Everyone:

I have just been recently diagnosed with Lyme disease.  To give you an idea I have spent the last 17 months SUFFERING like crazy.  I am 30 years old and sometimes I feel like I am in the body of an 85 yr old.  It all started in the fall of 2008 I have extreme shooting pain in my right leg so bad I would wake up yelling in my sleep....the caviat of this is that when this started I was 3 weeks pregnant...so everything that happened with me they said "because your pregnant, because your body is changing..blah blah...

I ended up delivering my daughter by c-section after 30 hours of labor because the back pain was so severe...again from the baby(so they said).  Finally I was able to focus on me....here is what happened since I had my daughter,

July 2009- MRI on lumbar(showed facet disease) EXTREME Pain also in my synovial joint...

continued to have HORRIBLE back pain...

Nov 2009- shopping with my daughter could barely walk OUT OF NOWHERE...thought my knee was going to explode....could not kneel on it NOTHING....sent for an X ray....of "you just have bursitis"  Had some blood work done ANA, Thyroid, Sed rate etc....told my thyroide was hypo...ok.....

Through Dec 09, Jan 10, Feb10, March 10, April 10 horrible fatigue...where I would wake up and could not wait for the day o end to go to bed...double ear infections, various colds...urinary urgency....BODY PAIN all over...knees, shoulders...Migraines had returned...joy.

May 2010- Sick again, swollen glands, horrific sore throat....cough....saw endocrinologist and Nuerologiust that month...neuro waste of time...sent for Bone Scan and another MRI, also had flu like illness this month too.  Endocrinoilogist diagnosed my with Hashimotos Disease...still suffering...mind you Sed rate has now been elevated since NOV, and is STILL elevated now at 73.   Never ending SAGA....had ultrasound thyroid....Western Blot run negative

Summer, extremely stressful...exausted...hurting...moody as hell(husband often tells me I need an atitude adjustment) Just felt horrible

October, extreme nausea, stomach pain...sick again with cough go the dr....she says she thinks it is Lyme...sends me for another blood test for ANA, Lupus Panel, Sed Rate, and western blot..negative across the board exceot Sed Rate still high...(WHY IS IT HIGH was the question) at that point my NP told me to see a gastro and rhema....

Nove 2010 see gastro.....haida scan, and endoscopy...BOTH FINE....ok....come back in a few weeks take some meds...blah bla....3 yeast infections is 6 weeks

Dec. 2010 speak to a colleague with chronic Lyme, told her what I was going through and how horrible I feel

and how I am so exausted I jusyt break down and cry and I AM NOT A CRIER because I cannot take the way I feel....tells me to see her doc...I transfer there 40 minutes away....what the hell do I have to lose...

Dec. 15 Ingenx test run and paid for....results yesterday

Positive IGM bands 18, 31, and 41... CD57 88 FINALLY i was happy and very sad at the same time...now the haul of getting better...I would like to have another baby someday a million things are running through my mind....can some of you shed some lite on treatment for me.

Thanks Alot!

Posted 1/2/2011 11:31 AM (GMT 0)
So glad you've got an answer to explain all that you've been going through.

Now the work of getting well again starts. I wish you much strength as well as loving support from those around you.

Take care!
Posted 1/2/2011 3:16 PM (GMT 0)
Think positive and find yourself an LLMD. I wasted my time with many doctors including infectious disease. Be thankful you have a diagnosis and move on it. You will get well. It just takes time. The most important thing is finding a good LLMD. They are the only ones who know the disease. There is no way of knowing how long you have the disease as it could have been the pregnancy that brought it out. This board is FANTASTIC. Don't be afraid to post all of your questions on here and you will get better answers than any doctor. I have been on antibiotics for 20 months but the first year was wasted with infectious disease dr. and not proper treatment. Get a hold of Dr. Burrascano's treatment guidelines. They are so informative. Research, research, research. You will be glad you did. Best of luck to you.
Posted 1/2/2011 4:35 PM (GMT 0)
Hi Lees!!!
Welcome to our forum!! I am really sorry to hear what all you had to go through in order to get diagnosed, but you will soon see that a lot of us have had similar experiences.

I am really glad that you found us! I'm sure that you will find us to be a caring, understanding & helpful group!! One of the best things you can do for your health now is read!!!

Read everything that you can get your hands on that you can make sense of about this insidious disease. You will have to be your own health advocate now, so you will need to

understand as much as you can about tick-borne infections - like they usually travel together. Have you been evaluated for any co-infections, like Babesia, Bartonella or Ehrlichia.

Have you read the sticky at the top of our forum yet? I would like to encourage you to read through it, as it is packed full of info the members here thought would be most useful to our new members & for the all members to be able to refer back to as needed.

It sounds as if you have already found an LLMD, is that right? If so, I would think s/he would start you on abx right away. Unless you are looking at an alternative to abx? We represent a wide range of treatment types - I use Acupuncture/Chinese Medicine & Western Herbology. Others use a Naturapathic (sp?) Medicine. Many use a combo of abx & herbs.

You will find that there is no one-size-fits-most" with LD treatments, as it all depends on what your body's weak points are, since that is what LD enjoys the most eyes and how well your body is willing to tolerate treatments.

You will also find that there are several of us here that have gotten pregnant and/or had children while either being undiagnosed or while under treatment. I had two children & 1 miscarriage during my very long time of being undiagnosed, literally about 40 years.

Springsjean mentioned Dr. Joseph Burrascano. He is a well-respected LLMD who has written his treatment guidelines down & has made them available to the public. Although he is only one of several who do this, I find that his style of writing is easiest for me to understand. You can download a copy in pdf form here:

betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf


As Springsjean said - ask all of the questions you want/need to - a few at a time anyway (giggle!) - and we will of course, help you find your answers as best as we can!!

This got long in a hurry!! Oops!! blush

I do hope this helps you some!! Once again, welcome!!! smilewinkgrin
Posted 1/2/2011 6:37 PM (GMT 0)
Thank you all so very much...I am still wrapping my head around this. I get really upset when I read about others who went years and years without a diagnosis...that would have been me had I not spoken with a colleaugue and gotten referred to her LLMD...THANK GOD....I was probably infected in 2008 sometime...because before that I felt great. I will be starting meds next week, when I meet with my Dr. I am happy to know that all of you are here...as the support is nice. Does the medicine make you sick or anything? How long does the treatment last on average...can you be pregnant while having treatment? I will also ask my dr. these questions...

Thanks
Posted 1/3/2011 12:22 AM (GMT 0)
Hi Lees,
Basically treatment needs to continue until 2 months after all symptoms subside is what a few LLMD's that I have been able to read up on have said about treatment time. I realize this is very vague, but once again, it depends on how deep or widespread the infection is, how well you tolerate treatment, and any other conditions you may have.

Are you pregnant? If it is even a possibility - please, please make sure you tell your doc on the first visit! Docs will usually use some very powerful abx. - unless one is pregnant, then they use a different strategy.

There are other members here that have gotten pregnant after starting, or were pregnant when they started their treatments and they would be better qualified to answer those types of questions - although I would suggest you start a new thread so that more members will see that you are wishing to talk about it.

Don't forget to ask questions, take notes (or have a voice recorder with you), and learn not to push your self too hard!
I hope this helps some!!!
Posted 1/3/2011 1:21 AM (GMT 0)
No NO I am not pregnant, but I believe I was infected right before I became pregnant with my daughter who is 19 months...I was just curious if it could be passed to her... I am looking forward to starting treatment so I can feel somewhat like myself eventually again...
Posted 1/3/2011 4:20 AM (GMT 0)
 

Hi Lees, welcome to Healing Well.  You're at the right place, many experts here to answer questions.

Yes you can pass Lyme to your baby, but it's rare.

Jane

 

Posted 1/3/2011 9:06 AM (GMT 0)
Hi Lee..
It is never good to hear that another person has lyme but it is good to hear that someone who has been all over the place with sickness finally got the answer and hopefully soon enoug to avoid major neurological damage and who knows what else.

I was wondering about the baby you had with the c section? how is that babu doing?

all thebest to you. Thank God you figured out what was going on and can get the right treatment.
Posted 1/3/2011 4:38 PM (GMT 0)
My daughter is doing great! She is amazing and smart....so I am not sure if she caught it from me...I still worry. I will be seeing my LLMD tomorrow...so I will ask her her thoughts...
Posted 1/3/2011 4:55 PM (GMT 0)
Unfortunately, Mcjane is right, LD & other tick-borne infections can get passed to a baby even before it's born and/or through breastfeeding. These things have been proven at this point.

Tick-borne illnesses can also be passed by blood products if an infected gives blood or tries to donate an organ even. It is only suspected at this point, but the possibility of it being sexually transmitted is being researched as well.

This in no way means that your daughter definitely has any tick-borne infections, only that she should be watched closely for symptoms & be sure that she is reaching all of those milestones that infants & toddlers should reach.

Should she at some point in time need that treatment there are LLMD's that kind of 'specialize' in that as well, or you could just use the LLMD that you are using - if they will treat children.

I would heavily suggest that you get started with detoxing - even before you start treatment. In the world we now live in, we pick up toxins from everywhere - and once you start treatment there will be a sudden (& large) influx of toxins from the die-off of bacteria. This is known as a "Herx". Here is a good explanation of a Jarisch-Herxeimer Reaction;

www.anapsid.org/lyme/herx.html

Something I have failed to point out yet, is the fact that you really should get a 'hard copy' of all of your test results. You should start a file to keep all of these test results, as it will enable you to be able to review them at any time- this is how I track some of my issues - but it will also better help us to help you should you have questions.

Please be sure to let us know what happens on your first appt!!
Posted 1/4/2011 12:54 AM (GMT 0)
Thanks so much for all of your helpful information...I will let you all know what happens tomorrow.
Posted 1/5/2011 1:03 AM (GMT 0)
The Dr. put me on to start 100mg of Doxy twice a day. She also told me to get Align the probiotic....I will continue to take my thyroid meds, my IBS meds, my reflux meds as well.
Posted 1/5/2011 4:12 AM (GMT 0)
Well, congratulations, Lees on getting started with some treatment! And it's also really great to hear that your Doc recognizes the need for probiotics.

I would suggest you read up on taking Doxy - that is if you haven't already. Here's the same link that is found in the sticky at the top of the forum titled "New to Lyme?,,,Start here".

www.ehow.com/how_2165217_avoid-doxycycline-side-effects.html

There is also a lot of good information about detoxing, including dry skin brushing, and a detoxing foot bath.

Please be sure to post any questions or concerns you may have.
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