Don't know if I have Lyme. Here is my long history

A very short bio:


I was born and Michigan in 1965. In 1979 I moved to Maryland after the divorce of my parents. In 1995 I moved back to Michigan to live closer to my sister. I am 45 years old, married with two young children.

I have always had a significant amount of stress in my life. I grew up with a mother who suffered from mental illness and although not physically abused, I, along with my two siblings was verbally abused for many years. This abuse still continues when I am in contact with her. I was uprooted in my early teens to live with my father and the situation there was tense as well as he had started a new life with a new wife and child. I did not attend college as I was eager to move out of my father's house and begin my own life.

I was alone and happy for the next six years until I met and married my husband in 1991. Our marriage has been extremely unhappy and stressful from the beginning. We remain married and have two children ages 10 and 11. My health has always taken a back seat and I come from a "pull yourself up by your bootstraps" family mentality so I dismissed a lot of things on factors I could control myself.

It has been a long time since I have felt well and my memory is very poor. I have kept adequate health records and will list all aches, pains, surgeries and illnesses as I remember them and have documentation for.





My medical history:

Smoker from 1980 - 2001
Birth Control Pills from 1981 - 1991
Fibrocystic Breast Disease - 1987 - Present
Hashimoto's Thyroiditis - 1993 - Present
Drop Foot on Left foot - May 2009 - Present
Loss of use of left arm - May 2009 - Present



In 1993 I was diagnosed with Hashimoto's Thyroiditis after two miscarriages. Prior to that the only health issue I had was fibrocystic breasts. I honestly don't know what actually came first and I had never heard of either. I was put on thyroid medication but never quite felt the same again. My main problems were muscle tightness and breast pain.

In 1994 I had two bouts of blood in my urine. Not just traces of blood but urinating blood. There was never any infection found and no pain was involved. I had scans of my kidneys and usual tests for infections and was told all was normal. Both instances resolved on their own after about 10 days and have never returned.

I became pregnant with my first child in March 1999. I was sick from day one and was hospitalized four weeks prior to my due date with preeclampsia. I weighed 115 lbs. when I became pregnant and was 200 lbs upon delivery. I was induced three weeks early and delivery was normal vaginal delivery with epidural.

As a new mother I was incredibly tired with a baby who never slept. I still worked full time and had my verbally abusive mother watch my young baby while I was at work. The fatigue and stress was enormous.

In 2000, history repeated itself again with another unplanned pregnancy. The result of the pregnancy were the same with preeclampsia and a slightly premature infant. I was sleeping on average two to three hours nightly, still working and dealing with my abusive mother and disappearing marriage.

As I write this it sounds so depressing but I was never felt depressed. I always was and still am a very intrinsically happy person. I was and am very tired due to lack of sleep but never irritable or depressed.

I always managed to do what was necessary to keep myself and household under control and was always a happy mother. I see depression in both my siblings and have been around mental illness all my life so I know about depression. I have never felt depressed. I love life and remain very happy in spite of all that I have been through.

In 2004 I remember wanting to take control of feeling better. I had gained so much weight and because I suffered from insomnia, I binged on sugar daily to keep awake. I weighed 155 lbs. and believed all my problems were due to a thyroid imbalance but could never find a doctor to agree. I was treated based on test results not on symptoms.

Around this same time 2004-2005 I began to experience pain in both my feet. It felt as if my shoes were too tight. I know now this is neuropathy but at the time I didn't know what is was called. I kept buying different shoes but nothing made it better. I went to my PCP and he did a glucose test that turned out normal and then said he didn't know what it was and to use orthotics and lose weight. This terrible burning tightness went on for three years.

In the spring of 2005 I was driving down the road feeling fine when I had sudden acute bladder pain. This pain has been the single most painful event of my life. I was close to home and instead of driving to the emergency room, I went home to lay on the floor for two days of constant pain. I found some old Darvacet in the cabinet and lived off that until I could stand upright long enough to seek help. I began to have constant pain to the point of avoiding tampons and sexual intercourse because of the pain. I began urinating every 20 minutes. Although it was not painful to urinate, there was a constant pain. I saw my Gynecologist who found no infection and referred me to a urologist. The Urologist tested for infection and looked inside my bladder and found nothing. I can't stress enough the significance of this in my life. For the next five years, I was urinating between 40 - 70 times per day and about four times nightly. The pain persisted but it was not as severe as the initial "attack". Again, I sought answers to no avail.

In July 2006 I was standing in ankle deep in a cold swimming pool and my big toe on my left foot kept pulling upward. The sensation was uncomfortable so I stayed out of the water. I now know this is a Babinski reflex but at the time I did not know what the reflex was.

In 2007, I went on a benefit walk and noticed I was limping. My legs felt stiff and I could not finish the three mile walk. I put off seeking help for this until July of 2008 when my limp did not go away. My PCP told me it was sciatica but sent me for an emg. In July 2008 I was told I had a pinched nerve and needed physical therapy. I could not afford physical therapy so I printed out some exercises I found on the Internet and did them with no resolution. I developed Plantar Fasciitis in my left foot that I could not get rid of until 2009. Very painful.

In October of 2007, I took my kids trick-or-treating and barely made it home. (about one mile). My walking was stiff and uncomfortable and I was still limping.

Halloween 2008 - Same problem, a little worse, but I did make it home. Note: I could not walk far enough so i did not go out for Halloween with my kids. Very Sad.

In the late summer - early fall of 2008 I was living on no sleep because of insomnia, still eating poorly, battling frequent urination, limping and suffering with painful feet. I then woke up one morning and noticed the left side of my face was drooping badly. Mostly my mouth. The first thing that came to my mind was a stroke. I noticed my left arm was weak. I wasn't sure if this had been ongoing and just pronounced on that day because I was so exhausted or an "event" that had occurred during the night. I neglected the incident all together and went to work. I noticed as the day went on my face was off but I felt okay. From this point on, I noticed my typing speed was off on my left side. I could still type two handed only slower than I had been.

In January of 2009 I had my first leg spasm. It was an extensor spasm in both my legs at the same time. It would happen infrequently when I laid on my back only. I also started to become aware of my cognitive decline. I blamed this on insomnia too. Simple math or spelling was a challenge and I constantly was forgetting simple tasks. This continues to this day.

In May 2009 I saw an Orthopedic Doctor who ordered x-rays of my spine. He also ordered a MRI of my neck and lumbar spine. He told me I had some cervical spine problems but not enough to cause my symptoms. He told me my basically spine was fine and I should see a Neurologist.

The next month, June 2009, I saw my first Neurologist who performed blood work and standard office test for reflexes, eye movements, etc. He said all was normal and to see a Rheumatologist. He said my Lupus test was normal and did not have an answer to my stiffness and limp.

In July 2009, I went to a new Endocrinologist about lower leg pain I was having. Blood tests revealed low vitamin D. I was told my thyroid was normal. I was put on vitamin D but pain did not go away. My leg pain became increasingly worse and at this point I really new something was terribly wrong but I didn't know where to seek treatment. I knew I was losing strength on my left side and also my ability to walk. I also noticed I would wake up a couple of nights weekly with uncontrolled shivering or night sweats. My body could not regulate my temperature.

November 2009, I went to a Rheumatologist who was able to see I had neurological deficits. He was able to elicit a Babinki sign on my left foot and said i had Hyperreflexia and Spasticity. He said to go back to the Neurologist for further evaluation. When I asked him about my muscle pain he said I had Fibromyalgia and gave me a prescription of Flexeril. I asked if it could be my thyroid and he said no. I took a Flexeril and it made me very loopy so I never took one again.

December 2009, I went back to the original Neurologist who ordered a MRI of my brain and a SSEP Test. Both were normal. He prescribed baclofen for my spasticity.

At this point I was getting weaker and could not hold much weight with my left hand. My leg was dragging and my anxiety was increasing fast. I started taking vitamins including a lot of vitamin B. Almost immediately my frequent urination stopped. After 5 years, I was back to normal urinary frequency. I don't know if it was the vitamins or not but I am completely normal as far as my bladder goes. ??

In March of 2010, my mother recommended I go see a physiatrist. I did. He said I could have thoracic outlet syndrome and ordered a cervical and thoracic MRI. At this time I began having widespread fasciculations. When my MRI's were normal, I was convinced I had ALS. The same doctor gave me an emg that was normal. I was still concerned about ALS because I now had both upper and lower motor neuron signs and had lost most function in my left hand and arm along with foot drop. I could see the muscle between my thumb and forefinger was atrophied and I had lots of visible fasciculations.

The Physiatrist sent me to the U of M in Ann Arbor where I had lots of blood drawn. I was unimpressed with the Doctor not giving me a complete neurological exam and looking at my left hand/leg. At this time, I could not walk without tennis shoes on as I could gain no traction nor could I raise my left arm over my head.

In July 2010, I gave up on the U of M and went to an ALS specialist at the Detroit Medical Center in Detroit. He saw my motor deficits and agreed I may have ALS because I had no sensory symptoms and normal MRI's. He scheduled an emg/nerve conduction that he attended and supervised. The tests were normal and said I most likely had Primary Lateral Sclerosis because the emg did not detect lower motor neuron problems. He referred me to the other ALS specialist at Henry Ford Hospital in Detroit.

In December 2010 I had another emg/nerve conduction done by the Henry Ford ALS director Dr. Newman. This test was normal. He said while looking over my MRI record, there was something seen on my brain stem MRI. He ordered a spinal tap.

In March 2011, I had a spinal tap. The results of the spinal tap were four or more oligoclonal bands. The ALS doctor called and he said I did not have ALS but most likely Primary Progressive MS. He referred me to the Henry Ford MS specialist.

The Henry Ford MS specialist ordered more MRI's of my brain and full spine. She said I had Primary Progressive MS and told me there was no treatment. She gave me a booklet about MS and said to come back in four months.

After my series of MRI's, the Henry Ford MS secretary called to tell me that there is a lesion on my brain stem and C1 cervical spine but I did not meet the criteria for MS. I assumed this was the McDonald criteria. My MS diagnosis was revoked. I was told to keep repeating MRI's every so often to look for more lesions.

In May 2011, I went to my PCP to see what he thought and he said I had a lot of problems for having one lesion. He told me I could go to Mayo Clinic but because I have had pretty extensive testing already, he thought the expense of Mayo may just have the same outcome of possible MS. I asked him about putting me on Low Dose Naltrexone for Inflammation, Hashimoto's....... He said he had not heard of it and would not prescribe it nor could I obtain a prescription for Natural Thyroid, Armour, etc.

I went to the Internet because of Tendonitis and Plantar Fasciitis of now my right foot. I read about eliminating gluten and learned about Lyme being common and often misdiagnosed. I did eliminate gluten and had my blood drawn for Lyme. I grew up in a wooded area and was always outside. I was bitten by a few ticks as a child but never remember any rash.

As of today, I can only walk a short distance unaided. I have lost most use of my left arm and hand, I have uninterrupted memory and cognitive problems, joint pain, muscle pain, leg pain due to spasticity, and foot pain. I also have moderate light sensitivity, cyclical fibrocystic breasts, general weakness and overall malaise.

I remain undiagnosed.


My IGenex Results:


Lyme IGM Western Blot:

Igenex - Positive

CDC/NYS - Negative

18 kDa +

**23-25 kDa -

23 kDa -

30 kDa -

**31 kDa IND

**34 kDa -

**39 kDa IND

**41 kDa ++

45 kDa +

58 kDa +

66 kDa -

**83-93 kDa ++

Lyme IgG Western Blot:

Igenex - Negative

CDC/Nys Result - Negative

18 kDa -

**23-25 kDa -

23 kDa -

30 kDa -

**31 kDa IND

**34 kDa -

**39 kDa IND

**41 kDa +

45 kDa -

58 kDa -

66 kDa -

**83-93 kDa -

IFA, B Burgdoferi - Result 40

Equivocal



s
My regular PCP told me flat out to quit looking for answers and accept my decline. This prompted me to search harder for answers and tested through IGenex after searching the Internet.

My previous ELISA tests were negative.


I do have an appt this Friday with a LLMD in Michigan to see what he thinks. If you have been patient enough to read this very long post, tell me your opinion or experience please.


THANK YOU!

Hi Wiseguy,

Yes....getting in to see an LLMD is HUGELY important !!

All of my Lyme tests were either negative or 'indeterminate' ..... but I do have Lyme.... based on and diagnosed on symptoms. Antibiotics are getting me well.

Please keep us posted on how your appointment goes!

Best wishes!

 

Hi Wiseguy,

You clearly have something neurological going on, given the symptoms you mentioned.  I agree with Lymester, Lyme is certainly worth pursuing, especially if you remember having ticks on you as a child.  That is key, with or without the rash. 

I was bitten at age 14, and like you, there were no immediate symptoms--my body deteriorated gradually over the past 16 years.  I went from doctor to doctor searching for answers, and wasn't tested for Lyme until age 29.  Then I learned I have Lyme, Babesiosis, and Mycoplasmas.  (I also have Hashimoto's, Adrenal fatigue, weak bones, asthma, extreme food and chemical sensitivites--esp. to molds, formaldehyde, and chemicals, a bunch of heart symptoms, low platelets, urinary urgency, candida, leaky gut, and some damage to almost every organ in my body--too much to list).

Lyme produces neurotoxins as a waste product, but your symptoms sound pretty severe, so I would guess there may be something more going on besides Lyme.

Neurotoxins can come from molds, pesticides, pfiesteria (in areas of Maryland & Delaware), and based on your mention of depression in your family (even if not in you), your mention of possible MS/lesion, and your history of smoking, I would think mercury or other heavy metals may be involved.  A hair test can check for heavy metals.  I had a lot of mercury, and felt a substantial improvement in my mood after I got my amalgam fillings removed and detoxed with the supervision of my MD.  My plantar fasciitis, foot pain, and TMJ pain went away after this detox.  Detoxing from mercury should be supervised, however, because it can do damage if not done correctly.  A general rule of thumb is to start weak and slowly move to stronger detoxing, monitoring your response.  The Autistic community is up on this sort of information.   

Food additives that can contribute to neurological symptoms include artificial sweeteners, artificial dyes, and flavor enhancers.  Flavor enhancers go by 30 different names, the most common of which is MSG.  (See the documentary: Sweet Remedy, and the Russell Blaylock's book, Excitotoxins, the Taste That Kills).  I get headaches if I eat these in large enough quantities. 

Foods that can contribute to neurological symptoms include nightshades.  Nightshades include white potatoes, tomatoes, all peppers (except black peppers), and eggplant.  These foods contain solanine, which is a natural pesticide for the plant, but it accummulates in the body creating neuroinflammation.  I get burning eyes and joint pain when I eat nightshades.

I hope you're able to reverse some of your symptoms!  I know how frustrating it can be to be told to just "accept" your physical decline.  Keep searching, and eventually you will find answers.  They're out there--you just have to dig!

Wiseguy - you say you are undiagnosed, but that's not true - you ARE diagnosed with Lyme!! You have a very positive IGeneX IgM test!! Done. Get thee to an LLMD!! The CDC result says negative only because they want five positive bands, and we often don't add up to that. IGeneX says we're positive with two positive bands, and many Lyme doctors think that one Lyme-specific band is enough. Your symptoms are Lyme symptoms, your history about being out in the woods, being bit, not seing a rash - all typical Lyme history.

Also, besides Lyme affecting us anywhere, the co-infection, bartonella, can cause foot pain.

And the night sweats/chills you mention sound like the co-infection, babesia.

Each of these infections gets their own treatment.

My opinion - the LLMD may also test you for these co-infections. But they don't always show up positive either, so they may also be treated clinically.

I wish you speedy progress in your upcoming care with a real Lyme-treating physician!

Post Edited By Moderator (Traveler) : 7/3/2011 11:22:41 AM (GMT-6)

I saw LLMD on July 1st and he has started me on 300 mg Doxy. daily.


I'm glad someone is trying something but I am still skeptical. The LLMD thinks everything is caused by Lyme and I am not.

I am happy someone listened and I was able to also obtain a prescription for Low Dose Naltrexone too. I have been asking other doctors to no avail.

Thanks for reading and responding. It's always nice to get responses from other people who are going through abnormal experiences too.

Wiseguy,

Couple of years ago I did a LOT of research on the Western Blot because I had only 1 positive band -- 39 on the IgG. This is supposed to be the most species specific band on the WB. Dr B, Dr S (whose research you can find on the internet) both stated that one species specific positive band indicates Lyme infection. 2 LLMDs told me the same. This band would not be positive if I did not have Lyme.

I asked my newest Dr how he could know that this indicated a live infection and not a past infection. (as so many lab interpretations state) His answer was simple, common sense. This band most definitely indicates Lyme specific antibodies. So if I am still symptomatic, then the infection is clearly still active.

I have forgotten all of the bands's significance, but if you have a single positive Bb specific band, then you have Lyme.

I do not know what to say about your entire history, except that I am very sorry. There is no way to know if treatment can undo so much damage.

I do have one interesting twist, IF I can make sense saying it. Because my LLMD, who is an IDD researches HHV6 and CEBV, I asked him this: Did he think that contracting Lyme caused these immune disorders which then activated these viruses. Or did he believe that a certain genetic make up causes certain people to fall suceptical (I CANNOT SPELL ANYMORE!) to reactivation of these viruses, rendering their immune systems too weak to handle Lyme. (Noting how many of us have suffered depression and other illnesses in our past)

In other words, which came first, these other infections/viruses/incompetencies or Lyme.

He said of course it would vary from person to person, but in his opinion a chronic Lyme infection is a result of the above, not necessarily the cause.

Maybe this is part of the reason that there is so much debate out there? Maybe there are too many people who contract and get rid of Lyme and so that is perceived to be the norm.

At any rate, it is all more complicated than we even know.