Lyme Disease

When life gives you Lyme, have a Margarita

I’m finally dedicating a page to my journey with Lyme Disease, in the hopes of shedding light, offering hope, and simply sharing my story.  For now, I will leave comments open on this page so that others can also tell their tale.

~~~~~~~~~~~~~

The Symptoms

In January of 2010, I began experiencing pain in my left knee.  After consulting a doctor and having an x-ray, I was sent to an orthopedist.  Without the benefit of an MRI, he declared that I likely had a meniscus tear and would require arthroscopic surgery.  Even though I did not remember having injured my knee.  And to say that I am not the athletic type would be an understatement.

Surgery was performed in March, and rehab began immediately after.  Four weeks into rehab, I was not improving.  I was, in fact, getting worse.  After some blood work, which came back “elevated”, the surgeon determined that I had an infection, and wanted to perform another surgery.  After that June surgery, I was placed in an immobilizer for a week and began rehab.

Again, I did not get better.  In fact, I was far worse off than ever before.  And I could only bend my knee to 45 degrees and could put no weight on it.  Even after many weeks of therapy.

Some time after the second surgery, I began having pains in my shoulders, right hand, and upper left arm.  The surgeon was at a complete loss for what to do with me, attributing the knee pain to a bone defect, then a bone bruise, and finally throwing up his hands, he said that I needed to see a rheumatologist as well as a therapist.  So that I could get some Zoloft.  “To help me feel better.”  We walked out the door and never looked back.

We were now into late August with no answers in sight.  I was in a leg brace, crutches, and on some pretty potent pain killers.

I met with an orthopedist at the Mayo Clinic in Jacksonville.  He suspected a system wide infection and ordered another MRI and blood work.  He also arranged for me to see their rheumatologist a couple of weeks later.  Just to rule out RA.

At that meeting, the rheumatologist examined me and looked over my blood work.  Even though my symptoms were atypical of RA, and even though I tested negative for RA, he said that we were going to treat my illness as though I had RA.  He called the orthopedic surgeon that I had seen earlier, and he went along with this diagnosis.

I was then put on prednisone (which made me crazy) and methatrexate (which didn’t help).  The doctor told me that while they couldn’t reverse the effects of the disease, the meds would try to stop it.  And I would be on them for the rest of my life.

For me, this was a death sentence.  I was in constant pain, could not walk, and was losing use of my left arm, and right hand.

A local rheumatologist picked up where the Mayo doctor left off, and when she saw that I wasn’t getting better, she suggested that I go on stronger meds in addition to what I was already on.  She also issued me a permanent handicapped placard for my car.  This was a clue as to my prognosis.

This is when my husband began to put the screeching brakes on the whole process.  He began researching the affects of methotrexate on the immune system.  It pretty much shuts the whole thing down.  After a month, I went off the RA meds.  I was scared to death.  Scared to keep taking them.  Scared to go off of them.

The Diagnosis

He then made an appointment with his physician, who is well learned about the body’s ability to heal itself.  The doctor calmed my fears, and looked over all of the previous blood work.  My vitamin D levels were in the tank.  And that was just the tip of the iceberg.  With the doctor’s help, I embarked on a journey to build up my own immune system through vitamin supplementation, and healthy eating.  And then we began the long walk to find out what was really wrong with me.

Through some kind of technological miracle, orchestrated by God himself, my husband located a doctor in Orlando who was both a naturopath and an internist.  At the first visit, he looked over my blood work, examined me, and told me straight up that this wasn’t RA.  After further examination, he began to suspect Lyme Disease.

Going back in time a good bit, I did remember an odd bite on my left knee some years before. I thought it was a spider bite.  And I recall experiencing shooting pains that would come and go.  I had relayed this information about the unusual bite to each doctor that I had seen, but it fell on deaf ears.

The month prior to the knee pain beginning and not letting up, I had a bad bout with a virus.  Likely this weakened my immune system, allowing the Lyme to take hold.

And then the benefit of the two surgeries, was that it was able to spread to my entire system.

Hindsight.  It is indeed 20/20.

My new doctor ordered a good deal more blood work, including a definitive test for Lyme to be sent to the IGeneX lab in California.  This lab specializes in Lyme Disease.  Interestingly, we noted that I was tested for Lyme at the Mayo Clinic.  The report said that I was negative, but needed to be retested in a couple of weeks.  Indicating that I had at least a couple of bands show up in my blood work.  The CDC guidelines for Lyme are archaic.  It’s like being a “little bit pregnant”.

No one at the Mayo Clinic mentioned this to me.

The day before Thanksgiving, I sat in the doctor’s office and he gave me the news.  He said I have good news and I have bad news.  The good news is that it is Lyme and it is treatable.  The bad news is that you have a very long road ahead of me.

At this point, I could no longer drive or walk any distance.  I was also experiencing neurological problems.  I could not string together simple thoughts and sentences, could not at times remember even my phone number, and was constantly dropping things.

I remember sitting there crying in the doctor’s office.  Because I finally had proof that I wasn’t crazy.

The Treatment:

By mid-December, after several weeks of building up my system with supplements, I started on a protocol that included two different oral antibiotics.  I was also taking herbal medications designed to work with the antibiotics to strengthen my immune system and battle the Lyme.

Within 3 weeks I was walking again, and had regained the use of my left arm.  After a time, I was able to wean myself off of the pain medication, and could begin a new treatment using Low Dose Naltrexone in conjunction with the antibiotics and herbal meds.  This is when I saw the most progress.

I have been in treatment now for nearly 7 months and am making tremendous strides.  My children have their mommy back, and my sweet husband was able to relinquish all the cooking and grocery shopping duties back into my capable and functioning hands.

I am continuing the battle, as my recent blood work shows that this disease still thrives in me, but I’m winning.  I’ll likely always have issues with my knee, because somewhere between surgery #1 and #2, I inexplicably lost my ACL. An MRI after the first surgery showed that it was intact.  After the second surgery, gone.   Awesome.

If you know anything about Lyme Disease, you know that it is an insidious disease that can look like many other diseases (such as RA, MS, or even ALS – Lou Gehrig’s Disease).  It is very difficult to diagnose, and even more difficult to treat.  Because no two patients present with the exact same symptoms or respond to treatments the same way.

This is why many doctors are reluctant to treat Lyme patients.  I had no idea the controversy swirling around this disease within the medical community.

I take over 60 pills a day.  Including now 3 different antibiotics.  In the next few months, my protocol will change to include IV antibiotics.  If you are interested in my protocol, I will gladly send you my laundry list of meds and herbal medications.

Also, I’m including some helpful links that have been a lifeline to me.  I’ve condensed my story into this abbreviated version, so that your eyes don’t glaze over.  But I’m happy to talk about it.  I get more e-mail about this subject from readers than any other.

I’m one of the lucky ones.  It oftentimes takes years to reach a diagnosis, much less find a doctor that is Lyme literate.  I did both in less than a year.  Thanks to my intrepid husband.

Through everything, I never lost the ability to write.  I thank God for that, and for all of the sweet prayers that I could feel across the miles.  They sustained me.

Please feel free to share your thoughts and your journey in the comments section of this post.  And know, that if you suffer from Lyme, or love someone that is doing battle with Lyme, you are so not alone.

References:

Under Our Skin – a must see documentary, that is now available on NetFlix.

Healing Lyme – a book by Stephen Harrod Buhner (can be found at the library)

The International Lyme and Associated Diseases Society (ILADS) – Great resource for finding a Lyme literate doctor

IGeneX, Inc.  - Lab for testing for Lyme

Lyme Bytes – Great blog with relevant information

(I’ve unfortunately had to disable comments on this post because of SPAM.  I would love to hear from you via my contact page!)

{ 24 comments }

1 Karen July 14, 2011 at 8:12 am

Thank you for sharing this, DeeDee. My sister is currently struggling with Lyme and has finally found a doctor 2 hours away who is knowledgeable. She has been dealing with it for probably 25-30 years, but was only recently diagnosed. I know your story is an encouragement for her. She was just told yesterday that her next step in treatment will be a PICC line.

2 Sandi LaPlant July 14, 2011 at 10:02 am

Oh my gosh! What a terrible experience! I had no idea lyme disease could be so horrible. All I knew about it was that it is spread by tics. I’m glad to know you are on the path to being healthy again.

3 Gary July 15, 2011 at 10:28 am

Sorry for all the suffering you’ve gone through. I too had a unnecessary surgery in 1994. Not only that, he botched it up and cut a main artery near my kidney while he did the surgery. Gave me a blood transfusion due to the heavy loss of blood. Guess where I got LD from? The blood transfusion.

The next 10 years of my life went totally downhill. More doctors than I can count, 10 years later, I finally got the diagnosis–LD. I’m doing better now, but my life had changed in a way that I would have never dreamed of. This is one of the most dastardly diseases one could have. Thankfully I found a Biological doctor who helped me get better, but still I have a ways to go yet.

You’ve got a wonderful husband! Thank God for his diligent research on the internet and determination to get to the bottom of this. You are blessed–no doubt you already know that. : ) I have a wonderful and supporting wife who also has LD, but is doing really good now. Mostly symptom free most days. She’s my rock and has kept me motivated to not give up and not lose hope. We can beat this disease!

Thanks for sharing your story. You’re in my prayers.

Gary

4 carol gravante July 15, 2011 at 2:21 pm

Hi,
Thanks for your story. i am going to publish mine soon. We need to do all we can to inspire people to keep looking for an anwer to the crazy symptoms. i am in treatment but would love to hear your treatment protocol. the dr tried some antibiotics and anti cyst stuff one of which hurt my tendons. i then told him about Bactrim which i have a great reaction to. it worked. i am 80% back to normal.i see the dr. next monday and i don’t know what he will say. i have lost all together 90 lbs since being at my sickest. i go to bootcamp, eat right and pray. God has been my ultimate healer. i will pray for you too. athanks again for telling your story.

5 Joanie July 17, 2011 at 8:46 am

Thank you for sharing your walk. Our journey with my husband was different but similar in the beginning of his illness. I lost count at how many doctors we went to.

Thank God for your husband and him listening to his gut/heart. You both are a witness to God, especially working through this as a team. So many people dump their spouse when troubles come.

I think it’s just appalling that if the doctors can’t figure it out, they jump to it’s something wrong with you mentally- see a therapist. But that’s all too common.

You remain in my prayers for total and complete healing. Well done, good and faithful servant.

6 Amy Stults July 20, 2011 at 2:13 pm

Thank you so much for sharing all this, I have only briefly heard about lyme disease but now I feel i understand it so much more. I hate hate hate that you have had to go through all this :(

I love you even more for the strong, determined woman that you are.

7 Judy in Ohio December 18, 2011 at 6:20 pm

I had a tick bite 15 years ago. I was tpld I had Lyme Disease and was treated with antibiatics the whole summer. I am now having unexplained pain in my right foot and left hand. The bite was on my left shoulder under my bra strap. The bite was text book look alike from the doctor’s medical book picture. The pain is a burning type pain. I am sensitive to hot weather, used to love to be out in the hot summer days but I just can’t stand the heat. I’m 63 and threw menapols. Does any of this sound like you. I would like to know the herbs you take.

8 Fiddledeedee December 18, 2011 at 10:20 pm

I replied privately to Judy, and gave her my protocol. I am absolutely happy to do that with anyone who is interested! :)

9 AngelaD December 19, 2011 at 9:49 am

I am six months into my treatment for LD after 4 years of being misdiagnosed and having numerous tests with a variety of doctors and specialists. I would love to compare my treatment with yours. Would you please send me your Lyme protocol?
Thank you and stay strong!

10 Heather December 21, 2011 at 9:35 pm

Thank you for sharing your journey! I myself am a cancer survivor/fighter of 12 years and understand, from a different standpoint, what its like to fight for your life but also seeing God’s faithfulness through it all. I was wondering if you would be willing to share your protocol with me? My father-in-law has been battling Lyme’s disease now for 28 years. We’re always looking for new treatments, in hopes that that would be the one to really help him. Thanks so much!

11 Twila December 24, 2011 at 3:56 pm

I just started suspecting I have Lyme about 3 months ago, when my symptoms suddenly worsened, but may have had it for years, according to my symptoms. Unfortunately my blood test was deemed negative which was done through IGeneX, although acouple bands did show up. I am taking a nutritional Drink called Reliv and have started on grapefruit seed extract and Cat’s Claw. I would be interested in knowing what protocal you followed. A worker that has Lyme from my health food store did give me the name of the doctor that treated her, so possibly will check that out after the first of the year. Thanks.

12 Julie January 3, 2012 at 1:28 am

Dee Dee,
Thank you for sharing your story! Would you mind sharing who your LLMD physician in Orlando is? Best wishes for continued treatment success!

13 ShackelMom January 8, 2012 at 5:32 am

Hi DeeDee, I’ve been followingyour blog off and on for a long time, and now would love to know your LD treatment protocol. I think my husband has Lymes. We live overseas as missionaries, so we are kind of on our own for treatment, but we can get meds here pretty easily. I am so encouraged to hear how much better you are! Praise the Lord!

14 Emilee February 20, 2012 at 2:41 pm

Dee Dee, I was diagnosed 10 months ago. Since I was 16 (I’m 29) I have been having little issues here and there. I never put them together though. About 2.5 years ago I started feeling really poorly. I was always sick and very tired. I started to always feel achy. Then 2 years ago I had a breast reduction. I got several infections with it but then healed up fine. But in the mean time I started to just have pain in my feet and hands. I went to my doctor and she tested me for RA. It was negative so she said it was fibromyalgia. She started me on 300mg of Gabapentin. The pain then moved to my arms and legs and increased in intensity. So I went back and she increased the dose to 600mg. This continued each month until I was at 1800mg and on a sleeping med. My doctor wondered though if it could just be celiac disease. So she sent me to a gastroenterologist. When I got to that appointment she was asking all my symptoms. I told her that I was having trouble going pee. I just didn’t really know how to get it out. She immediately said I was in the wrong place. She said this seems neurological. She sent me to a neurologist. The first neurologist had me fill out a symptoms sheet. I had circled about 20 symptoms. She walked in the room and said I needed to be on prozac. She said that people who circle more then ten symptoms are generally depressed. She never even examined me. At this point I walked like I was drunk, I didn’t know how to pee, I was in so much pain, I lost all muscle strength and was unable to focus or pay attention for a long period of time. I had other things going on as well, but the list is too long. I asked my doctor for another neurologist referral and she gave me one. That neurologist examined me and said that my reflexes were hyper sensitive and was thinking I had MS. So I got an MRI of the spine and brain. They both came back fine. He told me that he was pretty sure that it still was MS and that we would do another MRI in a couple months.
In the meantime I got pregnant. This seemed like the worst possible thing that could happen to me. I was done having kids and my body was in no condition to carry a baby. But God had a plan. I had to immediately get off all pain and sleep meds. I had horrible withdraw and was horribly psycho for about a week. After that I started to love the little life inside me. I was desperate to find out what was wrong with me now that I couldn’t have pain meds. A friend of a friend had told her friend… about me and said she new of an acupuncturist who also looked at your blood and could tell you all sorts of things wrong in your body. I went to her and she looked at my blood under a microscope and found the spiral bacteria. She also found that my liver was stressed and I had a tun of plaque. She ordered a test to check for some common infections and a CD57. When I got those results I had several infections going on and my CD57 indicated to her that I had Lyme’s. She gave me the name of a doctor who she really liked and new Lyme’s. I went to her and got labs done at igenex lab and confirmed it. I have been on treatment now for 10 months.
Two of my children have always had several issues. One of my sons has been anemic and has had low growth hormone for his whole little life. The doctors said he was failure to thrive and were very concerned about him. My other son has fungus all over his body, he is very sensitive to light sound and touch. He also has had very severe bowel issues. We found out that the two of them have Lyme’s as well. They got this through pregnancy. We live in NM so it really isn’t here. My other two children seem to be fine. The baby I just had was the only one I had while being treated, so she only had a 1% chance of getting it, they say. I pray everyday for my little babies. I just beg that God would heal them. It is just too hard to see them suffer.
I am blessed as well that my journey has come to a diagnoses because so many people out there are suffering and no one will help them. They are probably all out there thinking they are crazy. I thank God that he provided me with the right doctors who were willing to hear my cry. I am doing much better. My amazing husband has been relieved of the cooking and shopping as well. Our poor husbands.
I homeschool my children as well and love to see them learn new things. They are on a gluten free diet, which seems to greatly help them. This is a long journey but at least it is treatable. Praise God for that.
P.S. I am sure you have seen this but if not will you please send it to everyone you know.
http://www.lymedisease.org/petitionscript/index.php

15 nutrition lover April 10, 2012 at 2:48 pm

What initially drove me to your blog, was your post on juicing, however, when i learned you are in need of healing, i wanted to recommend Traditional Acupuncture Institute. It is located in Maryland, however, I imagine consultations may also be available over telephone, or a practitioner could be suggested near you. Rebecca Snow is incredible and specializes in studying lyme disease: Rebecca Snow M.S., LDN, RH(AHG), CNS is a clinical herbalist and licensed nutritionist at Tai Sophia Institute’s Natural Care Center. I hope she is able to offer insight and healing. :) Tai Sophia Institute Clinical Services Center
7750 Montpelier Rd
Laurel, MD 20723
Phone: 41088890486614

16 Erin April 30, 2012 at 1:32 pm

Please tell me who your doctor was. My dear friend who is only 30 is deteriorating and no Dr. is getting to the diagnosis of Lyme’s Disease. She needs a Doctor who can make a clinical diagnosis based on a myriad of symptoms….all getting worse. Also, does insurance cover this…..called one Doctor in Ft. Lauderdale who is all “out of pocket.” My friend is located in Winter Springs, FL near Orlando.

17 Natalie Rynard May 14, 2012 at 4:15 pm

I came across this site when I was researching(to find) a good Dr. for knee problems. I was diagnosed w/ Lyme disease 15 yrs ago, after a 2 yr battle with unexplained illnesses, fevers, headaches, pain, etc. the Dr’s in my area could find nothing wrong, however would not test for Lyme. I finally found one that would and sure enough< i was positive for it. The only problem, I likely had it for years so the treatment was going to have to be aggressive. I battled through with a list of medications, eventually a PICC line, then 24 hr a day antibiotics w the PICC line. I had home health care for a long time, then was able to go back to oral meds. all in all, the medications lasted for 7 1/2 yrs., and I also followed a strict diet plan and homeopathic remedies to help my immune system stay strong. My cousin was diagnosed the same year, did not have aggressive trtmnt. and I am sooooo sad to say that she lost her battle w/ Lyme 2 yrs ago. Her organs were so greatly affected by this dreadful disease, and one by one, they were giving out until she lost the will to live. To anyone reading this…..YES, Lyme can and will kill you if you have it bad enough and are not proactive enough together with the Dr. you choose.
Anyway, to make a long story short, b/c as you well know, the trials and tribulations of this awful disease are far too many to list here; after 7 yrs of being medication free, I began experiencing some of the old symptoms. I had no reason to believe that there was a new infection at all, but I had a knee injury that was causing me some trouble at the time ( I tore some ligaments in my knee from a training program). I feel as though that injury made my body weakened for whatever reason, and I feel as though the Late Stage Lyme that I have began to rear its ugly head. To make it worse, I had knee surgery 2 mths ago to fix the problem and they found alot of destoyed cartilage (they removed it all) that they say most likely came from the Lyme. My story is similar, in the sense that at first all seemed well, then I got worse and worse as the time went on in rehab. I could do less after 3 weeks there than I could at the beginning of therapy. I felt as though the knee was getting worse and demanded another MRI, much to their surprise, the Patellar tendon had tears that were not there before, and it was very thin and weakened (he said it was not that way when he operated ), there was alot of swelling and Bursitis. I was dumbfounded. Now I am back in an immobilizer for a minimum of 6 mnths, cant bend my knee at more than a 45 degree angle, cant straighten it all the way, and the pain is unreal. I can not go up the stairs with out pulling myself using both handrails either. I am only 43 yrs old and I am scared to death, I feel like this surgery ruined my knee for life. If I could go back and change it, I never would have had the surgery that I now feel is responsible for giving life to this disease again………devastated…….

18 anita hinson July 3, 2012 at 3:49 pm

I have been to three doctors…diagnosed with stage 2 lyme..treated three times in 11 months with antibiotics ..been refered by my primary doctor to three infectious disease specialist …they have all refused to treat me…i just need answers and what i have reaf here terrified me…my lymph nodes hurt all the time…my joints ache…i have felt bad since i was bit last april…in clermont florida..any suggestions greatly appropriated
.anita

19 Laurie Linda at her TTCC July 14, 2012 at 9:56 am

Dated: July 14, 2012 @ New Smyrna Beach, FL
Most of all … thanks to DeeDee for this blog.

DeeDee’s encounters and the other blog writers are tragically the “norm” with the pharma and medical industry ignoring the rapidly galloping firestorm that is called Lyme Disease. One of the most fascinating speeches that I got to hear two weeks ago was a live streaming of Lyme Literate Medical Doctor and Specialist/Dr. Richard Horowitz of Hyde Park, NY speaking at a medical symposium on Lyme Disease at Skidmore College in Saratoga Springs, NY in May of 2012. (Go to the Skidmore College website and do a search). Though I am not a medically trained person, I still got the drift of what he was saying confirming my own experience** and that of other knowledgeable doctors and sufferers. Dr. Horowitz indicated Lyme Disease is PANDEMIC in the world.

**While vacationing in the Adirondack Mtns of NY in August of 2004 a tick bit me. A Bull’s Eye bite appeared on my left foot and I had no idea what that meant. Two months later I could hardly walk, talk or think but then had an epiphany (seriously) and realized it was LD. I fast-talked my primary care doctor into treating me, taking the standard protocol of 6 weeks of antibiotics. The first blood test she ordered indicated I did NOT have Lyme. YEAH, RIGHT !!! Well, I didn’t buy that and then marched my fluffy body over to a Infectious Disease Specialist who’d just relocated to my hometown from Michigan. The second, more expensive test she scripted me, for indicated that I HAD been infected with LD, but after the antibotic treatment ALL the spirochete were dead. By all indications, I was cured.

HA !!!

Fast forward 7 years. Now, almost out of the blue, as a NO medicine taking, healthy 72 year old, I have a bevy of “creeping-up-on-me” weird symptoms. So currently, I am leaving no stone unturned and am on a quest. I’m prayerfully going forward, steel jawed and determined, researching Lyme Disease as much as I can and know I will find someone who can help me.

20 Laurie Linda at her TTCC July 27, 2012 at 12:50 am

Hooray — I’ve found, via a friend of a friend, an MD/ND in Orlando and will be seeing him the end of August. It’ll be all out of pocket ($$$$) so I might have to sell a child or two. In the course of today’s work here at my desk re: Lyme, I got to hear several horror stories from some other friends of friends — typical twit medical people who drag out the old carnard “it’s all in your head, you need to see a psychiatrist” — yada, yada. Meanwhile the sufferers continue suffering while these doctors stagnate in their own ignorance and arrogance.

21 Anita September 17, 2012 at 6:08 pm

I love the way you present your story. I have been in bed sick for a year. Unable to walk, no energy to do anything, fevers, swollen glands, jerky and unresponsive leg muscles, incredible EXHAUSTION. Had no idea the depths to which “tired” could go. Been through thousands of dollars of tests and many doctors, among them the “it’s psychological, see a counsellor” i.e. – you are crazy. My doctor finally found an off-the-wall ex-doctor (lost his license for treating Lyme patients -doesn’t that make you want to rage at SOMETHING?) who told him I have Lyme. Tested with Immunosciences lab and technically according to the guidelines it came back negative but it showed Bb and babesia. My wonderful doctor said we’ve got nothing to lose let’s treat it and I am now on IV rocephin and flagyl daily along with Dr Burrascano’s supplement and diet regimen. Can finally walk. Feel relatively “good” 4-5 days a week. Pretty awesome. Get so discouraged looking down the road ahead though. How long on IV? How do you know if you’ve really beaten it? When will it come back and how? Scary stuff. Trying to focus on and be happy about my current progress. Have three kids 10 and under and starting homeschooling soon. Will I be able to keep up and not run myself into the ground and get so sick again? Only God knows. Then I hear Him saying Luke 8:25 Why are you so fearful? Where is your faith? He knows the future and He will provide. Thanks for sharing Deedee and would love to hear from you.

22 Alison January 7, 2013 at 5:30 pm

I graduated from Satellite with your husband. Dr. Sponaugle in Tampa is doing great work with Lyme patients. See link below.
http://floridadetox.com/wellness-programs/lyme-disease-lyme-disease-treatment-treatment-for-lyme-disease/

23 Valerie January 14, 2013 at 12:32 am

So much of what you said rings true in my life. I had LD the first time in college. I was in the South, but my family lived in PA near one of the highest dear populations in the state. Four out of five in our family came down with LD, but each of us had different areas that were similar and yet some different. Two have has relapses and my father, well, we’ve just lost count. The first time around was the usual and it took almost 2 years to diagnose, but my parents recognized it when they came down for a visit and demanded attention from my campus doctor ( as did my current boss then). After trying to get knowledgeable help in the area, it was apparent I needed a Lyme literate doctor, which meant going to PA for visits. I was tested through IGeneX and tested positive. After 18 months of oral antibiotics and mind numbing days and nights, I was finally declared symptom free. I was better after having symptoms very close to MS, forgetting my roommates’ names, and literally having to think through each step in the motion of walking for some time.
Fast forward over 10 years, 2 degrees, and 3 children later, we were coming back from the Midwest when I found a deer tick in the nymph stage on my hip. I was ready to panic. We had recently moved, though still in the South, and I didn’t have a doctor or insurance at that time. We called around to doctors, urgent care facilities, etc. No prophylactic treatment. If I came up with the rash ( which we knew only a certain percentage ever gets or flu like symptoms, then they might do the bare minimum. I didn’t get “sick” till almost 2 months later and now 6 years later I am labeled as a chronic Lyme patient after going through the typical round of doctors, tests, and the usual of LD patients. I just kept getting worse, only this time nerve pain was my extreme nemesis and still is. My thyroid is shot, my Vitamin D levels are too low, along with some of my immunoglobulin numbers, but due to my ssllooww progress, I’ve had two doctors that were helping five up on me. I am on a laundry list of meds, vitamins and supplements as given by another doctor we found this last year and after just treating for a possible co-infection too, we may have a glimmer of hope. Yes, I will likely have permanent damage. I’m also a SAHM who home schooled till I got so sick it wasn’t possible.. There is much more like any one in our circumstances. I would also be interested in what your current regimen is, if you don’t mind sending it to my E-mail. I also have wondered if a dietary regimen made a difference since so many trained “specialists” have told me it doesn’t beyond the most obvious don’ts.
We currently have good insurance, but due to the politics, our particular area and such, getting IV treatment would be really hard to find a doctor willing to do it, and insurance won’t cover it, though two of my more recent doctors told me I would be better off with that type treatment. Instead I’m on 3 oral antibiotics, still running fevers as the norm, and my body is physically “shot.” Have already tried some of the things out there that people swear will give me more energy and build up my immune system, but none of those helped so far and I’m concerned about the financial aspect considering I can’t work an outside job, or think straight most days to even be there for my family. It was already too late to look into disability or something else to help pay for these things. I too have a wonderful husband who does so much to keep things going while working full-time and getting me to my appointments and so much more. I do trust in God and know He has a plan for my life regardless of my current circumstances. Thanks for sharing and reading. Please excuse any errors as most will realize it comes with the disease to some degree.

24 Chasity DeSmidt January 29, 2013 at 5:46 pm

Great blog! Thank you so much for sharing your experience. I am at my wits end with this horrible disease!! I have been diagnosed but I’m getting worse every day. I have been treated with 45 days of antibiotic but I think I went so long untreated that I need stronger meds. I have ok days & then I have horrible days. The bad are defiantly outweighing the ok days!! Please email me a list of your medications. I am a single mother of 2 & I am begging for help!!!

Comments on this entry are closed.