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Posted 4/12/2011 4:15 AM (GMT 0)
Hi everyone,

I'm new to this forum and I am in need of a Lyme Doctor. I was diagnosed 7 years ago with Lupus and have seen numerous doctors who always want me to take steroids. The problem is that I can't tolerate steroids. I seem to be alright while on them but during tapering I have an exacerbation of symptoms that usually lasts about 3 months. My doctor recently gave me a shot of Toradol (nsaid) and 10 days later I ended up in the hospital with an episode of near-syncope, nystagmus, extreme weakness....same scenario as the steroids. If anyone has insight of such reactions please share.

I believe it's possible that I was misdiagnosed and that I actually may have Lyme. I'm 52 and at 13 I pulled a tick off of my arm that 3-4 days later produced the characteristic " bulls eye" rash. My mother and I thought this was strange but Lyme had not been discovered at this time. I do not remember any flu like symptoms at the time. My first symptoms appeared about 8 years later, a strange myalgia that no one could diagnose. I had ebbs and flows of this throughout the years until 7 years ago when it hit me hard enough to disable me.

Does anyone know if you can get a bulls eye rash from a tick and NOT have Lyme...or is this always diagnostic?
If anyone knows of a Lyme specialist in my area...just outside of Memphis in Mississippi, I would much appreciate that information.
Thanks and God Bless
Posted 4/12/2011 11:34 AM (GMT 0)
Bullseye means Lyme...sorry :(
Posted 4/12/2011 4:42 PM (GMT 0)
Hi LupusorLyme!
Welcome to our little spot!! I am sorry to hear all that you have been through, but I am sure glad you have found us! I'm sure you will find us to be a helpful and understanding group!

If you haven't already, it would be beneficial for you to read through the thread at the top of the forum titled, "New to Lyme?...Start here!", as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts.

I agree with what 1bitten said. The Bullseye rash is one sign of the skin form of Lyme Disease. It is absolutely indicative of LD. LD can actually be cultured from a skin scraping of this type of rash. You are in need of evaluation at minimum, by a Lyme Specialist, which are known as LLMD's - Lyme Literate Medical Doctor.

There are different treatment options, whether or not you choose to go with Western Medicine or a Natural protocol. For more info on finding Western Medicine docs in your area, please email our long time member, Dan's Mother at: [email protected]

You can email Stephanie at: [email protected] . You can also go to: www.turnthecorner.org/bod.htm 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) doctor. 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

We look forward to getting to know you through your posts!! Once again, welcome!!! smilewinkgrin
Posted 4/12/2011 5:15 PM (GMT 0)
Welcome to the forum. Sorry for your possible misdiagnosis but you are not alone. Many, including myself, have been misdiagnosed. Unfortunately this disease is just so knew and misunderstood. The only way to go is LLMD. They concentrate and most are open to keep learning about the disease and treatment. I have run into many many doctors including ones I really like (pediatrician) and trust (or trusted) and ones I didn't like (infectious disease and neurologist) that just know nothing about lyme. Research and be your own best advocate. You will also get great advice and answers on this site. The very best to you.
Posted 4/12/2011 10:10 PM (GMT 0)
Thanks 1bitten, traveler, and springsjean for the quick responses and good advice. I see that this site has much to offer and hopefully I can be helpful to others as well.

I am seeking out a LLMD in my area for initial diagnosis and possible treatment. I say that because at the moment I am frightened by western medicine.....I have a tendency to become sicker after my doctor visits. In the past 7 years I have received some relief using alternative therapies, however this is a new way of thinking for me since my entire working life was in the medical field.
If antibiotics are needed then I think I would be willing to try that, but I'm leaning more toward natural therapies. Not crazy unscientific therapies, but things that just make sense.

I hope that I don't sound cynical, but I learned a long time ago that if the doctor can't figure out what's wrong with you, then it must be psychological....according to them that is!!!

From this southern lady,
Thanks again y'all !!!
Posted 4/12/2011 11:36 PM (GMT 0)
Hello and welcome!

I became better using alternative medicine and have been better for over 5 years now.  Many years ago I bought Dr. Jernigan's book called "Beating Lyme Disease" and followed his healing at home protocol.  That book is packed full of information.

If you are interested in reading his book, let me know and I will post where you can buy it.

Good luck to you!

Denise

Posted 4/13/2011 1:54 AM (GMT 0)
Thanks Deejavu!

I am so happy to have found you and my other new friends on this forum! I am very much interested in Dr. Jernigan's book and home protocols. I'm also interested in what your symptomology was and how you discovered that you had/have Lyme Disease...that is if you feel comfortable sharing.

It's very encouraging to me that alternative choices have worked well for you. I fired the last 2 rheumatologists that insisted that I take steroids...which I thought I would die from.

Right now I'm sipping on ginger tea. It has helped me with joint pain for the last few days, as I refuse to take any meds right now.
I don't know if anyone else has tried this, but for me it's helping with the inflammation!

God Bless!
Posted 4/13/2011 11:18 AM (GMT 0)
Morning lupusorlyme,

First of all, I think it's wonderful that you have such a great attitude!  That's half the battle in my opinion.   The symptoms I had were abnormal fatigue, abnormal fevers, brain fog, joint pain everywhere, severe leg pain (I felt like there were 100's of tiny knives inside my legs) and for a  very long time I couldn't walk, my legs were so weak that I would fall down, I needed to use crutches.   I also suffered from lyme rage episodes saying words that I would never normally say to people (that was scary!)....

After seeing so many different doctors I became frustrated to say the least and typed up a timeline of when I first felt sick and all of my symptoms, then I went on the internet and started doing my own research and everything kept coming up lyme and ehrlichiosis.   Now all I needed was another doctor to test me and since I already saw most every doctor in my area, I remembered this nurse who I was really impressed with in the past and finally found her.

I told her that I thought I had lyme and she performed darkfield microscopy and sure enough, we watched my spirochetes on her monitor.  Then I went to another doctor who sent me to a different doctor and he sent my blood to IgeneX (I had never heard of them at that time).   Sure enough I tested CDC positive for ehrlichiosis.   Back then I was given Doxy which didn't help me.

I felt lost and I had no idea what to do..  Then I joined a lyme forum (not this one) and read many posts.  One member wrote about Dr. Jernigan and how she just read his book and thought he was brilliant and way ahead of his time as far as chronic illness so I bought his book and one of his botanicals figuring I had nothing to lose..

I remember within 4 weeks I felt a huge difference just from taking that one botanical so I continued and added another botanical.  I also learned about detoxing and how important that was..  And that was the beginning of my healing process.  I remember how excited I was to be able to use my legs again!

Aren't you glad you asked?  LOL!   Anyway, you can buy Dr. Jernigan's book below (I have no affiliation with the Hansa Center). 

http://hansacenter.com/books.php

www.hansacenter.com

Hope this helps,

Denise

Posted 4/13/2011 8:49 PM (GMT 0)
Thanks for sharing your story Deejavu!

I am interested in knowing about that first botanical that you tried. I might have to do things one at a time to weed out any that might cause a problem.

I would like to start detoxing immediately. I believe something is posted in "new to lyme" on detoxing. Is this the method you use?
Thanks for the link...I will check it out.

You've come a long way...and I'm so happy for you!!!
Wishing you the best!!!
Posted 4/13/2011 11:32 PM (GMT 0)
You're quite welcome!  Yes, the detoxing instructions in the sticky thread "New to Lyme?  Start Here!" is what I followed and still follow simply because I feel we all live in a toxic world.  Detoxing keeps my immune system strong so my body can ward off future illnesses.   I'll be honest, it took me a long time before I could do coffee enema's but once I did, it was worse in my mind that the actual act.  I still continue to do colon cleansing (in fact I'm doing a 10 day colon cleanse now).

The first botanical I took was Dr. J's Borrelogen.  I also wanted to keep everything simple so I would know what was working and what was not.  Once I felt a difference using the Borrelogen I added what is now called Neuro-Antitox CNS/PNS Formula to bind up toxins and rid my body of ammonia (lyme bacteria automatically converts into ammonia which causes lots of problems).

If you are going to start with any of the botanicals, I highly recommend reading Dr. J's book first.  Trust me, you will not regret it.

By the way, good for you for drinking ginger.  I always keep fresh ginger root in my refrig.   Use it in detox baths, drink it, cook with it, love that ginger, can you tell? 

Any more questions, feel feel to ask and good luck!

Denise

Posted 4/14/2011 4:51 AM (GMT 0)
Thanks again,
I've got a lot of researching to do! I'm glad you brought up the ammonia...I've been very interested in this and today one of my friends on facebook posted something about the levels of ammonia in ground beef in America. I've been asking and asking around if anyone has insomnia when they ingest beef, because I have had to eliminate it from my diet because of the insomnia. Well, now my B12 is low and I know it doesn't come from plant sources, but anyway this ammonia thing is scary. Also a few years ago one of my Lupus docs put me on a new drug and my perspiration smelled of ammonia(sorry). It scared me so bad...I thought my liver was being damaged. I'm going to research the ammonia more.

I went through those lists of the symptoms of lyme...and I couldn't believe how many of those symptoms I've experienced. I feel bad for the people on these forums...I know how much people are suffering with chronic illness.

I'm going to start the detox baths and get that first botanical.

I'm happy to say I've been drug free...no nsaids, no lortab, nothing but ginger for the past 5 days now...think I'll stick to this!!

God Bless
Posted 4/14/2011 4:26 PM (GMT 0)
Hey lupusorlyme! I think I may be in a pretty similar boat as you. I was bit by a tick when I was little and developed the bullseye rash, but it was never treated because as our family doctor told my mom: "Lyme doesn't exist in Texas."

19 someodd years later and I started experiencing month-long spells crippling fatigue, weeks of vertigo, numbness in limbs, pain in shoulder, etc etc. My symptoms just started snowballing and getting disabling about 4 months ago.

So I've spent the last 4 months bouncing around to a million doctors. I'm also growing a bit cynical towards western medicine. Nothing has been confirmed yet but all my lyme tests so far are highly indicative, and the IgenX results come in tomorrow.

My rhuematologist is amazing, I love him. He believes in the chronic form of lyme and thinks that I could have that and that it may have caused autoimmune diseases as well. I have a lot of symptoms of Sjogrens and just developed a massive rash last Friday. Dermatologist has me on steroids (I hope they don't affect me the way they affect you when you taper! eep!) and if that doesn't knock out the rash (so far it's not) then they will biopsy to investigate autoimmune further.

Anyway, regardless of what I have/end up being diagnosed with I have so far found some relief of symptoms in chinese herbs and acupuncture. They've really helped the IBS, fatigue, headaches. My LLMD has me reading 'Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections' by Stephen Harrod Buhner and I highly recommend it. :)
Posted 4/15/2011 1:40 AM (GMT 0)
Hi all,

As far as Buhner's book, yes, I agree it's a great book!  But I wouldn't buy any herbs on the internet because I wouldn't know how fresh they are..  That's why I had bought Dr. J's botanicals because he grows his own plants, harvests them, tests them and bottles them.  

As far as food which is getting more expensive every single day, most regular meats, poultry and who knows what else contains antibiotics and who knows what else?  Some people don't even trust organic food..   Every summer I grow my own veggies and will do that again..  It's really difficult to decide what to eat and what not to eat..   Hence the internal detoxing as well as external...

Dr. Jernigan wrote about lyme ammonia and this article is about 8 or 9 pages long and well worth reading:

http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/pg_2/?tag=content;col1

Hope this helps,

Denise

Posted 4/15/2011 3:51 AM (GMT 0)
Hey Aquaholical,
Yes...sounds like we're in the same boat! So sorry to hear of all your problems!! I am glad for you that you have a good relationship with your Rheumatologist and you can discuss the lyme situation. Does the Dermatologist think your rash is discoid lupus?...you can have both discoid and systemic lupus together. I was diagnosed with both. I was also diagnosed with Sjogren's...it seems to come and go...symptom wise. Make sure your Rheumy knows that the Dermatologist put you on steroids!!

The first Rheumy I had was upset that the Internist had started me on steroids, so he put me on Imuran to help taper off the steroids...it took nine months to get completely off of them. I developed osteoporosis as a result and I believe they broke my body down and just made things a lot worse. I don't think I ever fully recovered from those bad boys!!! The next 2 Rheumatologists insisted that I take steroids...and I had to fire them. I really believe now that the majority of the medicines we take for the disease just creates more complications to the existing disease. I know it's very hard to decide on which road to take...should I take the meds...should I NOT take the meds??? We just want to get well, don't we!!!
If I had it to do all over again I would not have loaded up on 6-7 meds for my treatment, but that's just me. I would never try to interfere with someone else's treatment plan. I'm glad we have the support of each other on this site, helping us to make informed decisions. Thanks for the advice about herbs and acupuncture, and it sounds like another good book for me to start on!
I truly wish you the best and I'd like to know about your Lyme test results!!!

Deejavu...I know what you mean about the food, sometimes I just feel better if I don't eat at all! Food really does affect my symptoms and I'm sure others as well. I wish I had a garden!!
Thanks so much for the ammonia article link!!
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