Hello Everyone...an intro from TN!

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jaleenasmom
Regular Member


Date Joined Jul 2009
Total Posts : 29
   Posted 7/9/2009 6:01 PM (GMT -7)   
I have been here for the past couple days and I am so glad to have found all of you, though it is sad that we need a forum to vent about Lyme.

My first name is Lynn. I am going to be 43 at the end of this month. I have a soon to be 6 year old daughter who is soooo wonderful! Her father is somewhat understanding about my plight.

My lyme, and possibly bartonella, started to rear it's ugly head very early in life. Lyme first if course, but, I got my first "fatty tumor" when I was 23, in my left thigh. Now both my feet are twitching like crazy all the time and have been for about two months. My feet, heels and achilles tendons are in pain nearly all the time now. I am starting to get scared.

I have been tired all my life. I was never like other kids who actually played during recess on the playground. My parents used to ask me, "If you feel like this now, what are you going to feel like when you are 30?" When I turned 30 I told them. I feel awful and not much different than I did when I was 5. So there.

When I was pregnant, I began to feel so tired that I was having to rest after taking a shower, before I could dry off and get dressed. My heart rate would skyrocket. I already knew I had MVP and was on meds for that, but this was different. After my little girl was born, several months later, I awoke one morning to excrutiating pain in my hands, wrists, feet and ankles. I went to my internal med doc and he immediately sent me to a rhuemy doc.

In the mean time, we found out that my mother had Morgellons. That is where I discovered about Lyme and it's symptoms. As I read the list, I felt like I was looking at a list I could have written myself. So I go to the rhumey doc and he says, "I am a puzzle" to him and that, even though my lupus and rhumetoid levels were very high, I didn't have either. Nor did I show anything but completely healthy bones and joints. I asked him if I could have Lyme disease. His exact words were "we don't have that here". Ugh.
So I go back to my internal med doc and he says it must be just plain old fibromyalgia. I told him before I laid down and died, I wanted to explore the area of Lyme. Now, I had a good internal med doc. He immediately sent me to an infectious disease doc, who clinically, preliminarily diagnosed me with lyme and put me on a 30 day round of doxy at 200mg a day. I felt so much better at the end of that 30 days! Thing is, my blood test came back negative, so my insurance won't pay for the treatment.

I sat down and talked to my hubby last night and we decided to go ahead and send some blood or get the kit or whatever to/from IgeneX.
I am really getting sicker.
I have started taking Lyrica for pain and it is helping, but not with the fatigue. Not to mention to brain fog. I nearly walked out in front of a mail truck today. I was seeing the truck but it was not registering that I should stop walking or I might get run over.

So I am about to begin my next, in a long line of, 30 day regimen of doxy and then do whatever steps it takes to get my IgeneX tests run.

I have a lot of reading to do here. I am learning all I can. I am here to learn, give support where I can and get support and help.
I feel like if I don't start something soon, I am going to die soon and I don't want to leave my little girl if I can help it at all.

I would love to find a LLMD somewhere in my vicinity. I am willing to fly to the eastern part of the country if need be.

Is there a list here of LLMD and their locations? I am in NW TN.

OH, and what is happening the 30th? I admit I haven't done tons of reading here yet, but I keep seeing it mentioned. I hope it is something good.

Thanks for reading my lengthy but brief history. I am looking forward to getting to know all of you!

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/9/2009 7:36 PM (GMT -7)   

Hi jaleenasmom, welcome to the board!  I am sorry you have been sick for so long.   Where in TN are you?  There definitely is Lyme in TN!  Ticks do not stop at the state border and turn around!

Below is a Lyme symptom list.  You can have any combination of symptoms.  

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
 

It is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Have you been tested for these yet?

200 mg of Doxy daily is not strong enough for Lyme.  I believe the recommended amount is 300-600 mg daily with 400 mg daily often prescribed.  There are some important tips about taking Doxy.  Do not have any dairy, magnesium, or iron products within two hours of taking it or it will not be absorbed properly.  If it makes you nauseous, eat something substantial and non-dairy before taking it.  Avoid the sun.  You can get a severe burn in minutes even when wearing sunscreen.  Do not lay down for at least an hour after taking it, or you can ulcerate your esophagus.  This is very painful.  Drink a full glass of water when you take it for the same reason.

From what I understand, many women who have Lyme feel worse after delivery.  I don't know if you are aware, but Lyme can be passed through pregnancy and breastfeeding.  You may want to have your daughter tested also.  If you need a doctor recommendation, you can email me at ko_@bellsouth.net

Are you familiar with the Jarisch-Herxheimer Reaction (herx)?  Often when people who have Lyme take antibiotics their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary, but it is a good sign the antibiotics are working.  Although it can vary individually, many people experience this at the beginning or change of treatment and every three to four weeks.  During treatment it is important to document your symptoms daily.  One way to do this is to list the main symptoms you have each day with a numerical rating of their severity from 1-10.  Over time when you review this, you can see when your herxes occur and how you are responding to the meds. 

Do everything you can to strengthen your immune system--eat healthy, drink a lot of water, exercise whenever possible, do things to detox, get enough rest,  take appropriate supplements etc.   Whenever you are on antibiotics, it is important to take high-quality acidophilus to replace the good bacteria and prevent yeast overgrowth.  The best ones to get are refrigerated and have a high culture count.  Most health food stores have them.  Wait at least two hours after taking the antibiotic to take the acidophilus.

It is also important to learn as much as possible.   I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.   He discusses antibiotics and doses starting on page 18.   I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.

Hang in there okay?  Good help is available, and you are not alone.



RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/9/2009 8:07 PM (GMT -7)   
HI Lynn, welcome to the board. my daughter lives in Tn. about 65 miles south of nashville.
 
i dont know why most DRs love to say "we dont have lyme here" when in fact its looking them right in the eyes.hopefully the hearing on the 30th will change all that. we can only pray.
 
sorry this is short but i'm not in to great a mood tonight. i wish you all the best, and know more will post better info to you then i can give.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


jaleenasmom
Regular Member


Date Joined Jul 2009
Total Posts : 29
   Posted 7/9/2009 9:10 PM (GMT -7)   
Thanks ticker and RD.

Ticker, I am in northwest Tn. I nearly fell off the exam table when that doc told me that. I knew by then that it was everywhere. I just am wondering now why doctors are not trying to make themselves more knowledgeable about Lyme. It frustrates the jeepers out of me.

Out of the list you provided, I don't have unexplained breast milk production and bell's palsy. My worst symptoms right now are the fatigue, and I mean extreme fatigue, muscle twitches, especially in my feet and eyes, poor balance/vertigo, difficulties with thinking/reacting, and my sleep is terrible.

Thanks so much for the info on the Doxy. I am watching my daughter like a hawk because I feel sure that my mother passed this from herself to me and my sister. My daughter has something "wrong" with her reasoning. At first they thought it might be Autism, but she came out of a lot of the blatant symptoms of Autism and now just has a problem with being "in touch". It is hard to explain.

I was just learning about Herx and finding this board. And the detox stuff.

Dr. J is a hero in my world! I have not read the 2008 papers yet, but I sure will and get the other reading you have suggested also.

RD, I have been reading some a bit here about what you are up against right now. I totally understand your mood and look forward to seeing how it goes for you.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/10/2009 1:38 AM (GMT -7)   
Hi Lynn,

Welcome to the board! If you haven't done so already, read the sticky threads at the top of the Lyme Disease page. It will give you a ton of information.
2003: Symptoms started;Anxiety,Panic Attacks,Heightened Senses
2007: Diagnosed with Lyme. Didn't start treatment.
2008: Symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1500mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements

**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 7/10/2009 7:27 PM (GMT -7)   
Lynn,

Hi! Sorry for all you have endured all your life, and wish you well with your healing. I'm sure you will find answers here!
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