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Old 09-02-2007, 01:39 PM   #1
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Should I bother getting tested?

Sorry for this being so long. Just trying to convey as much info here as possible. I was doing an internet search on skin tags and came across a Lyme Disease website. After looking at the symptoms list, I'm kinda sorta thinking it might be a good idea to get tested. I've never been tested for Lyme and my drs have never brought it up.

My list of symptoms is below. Do you think Lyme might be the root cause of all this? I've had some of these symptoms since my teens (in my 40s now) and some have only developed in the last 2 years. I don't have the typical (?) joint pain that I've heard a lot of Lyme folks have, so I'm not really sure about all this.

Physical symptoms:
  • Acid reflux (GERD)
  • Acne, especially around chest and jawline
  • Cold hands and feet
  • Constant sinus congestion
  • Cystic breasts ovaries and cervix
  • Eyelid twitching
  • Fluctuating between constipation/diarrhea
  • Headaches (sinus, tension, migraine, icepick and combinations)
  • Insomnia (trouble getting to sleep, wake up at obscene hours of the morning)
  • Intolerance to heat and cold
  • Long heavy painful menses
  • Low body temp (usually run around 97.4 or lower)
  • Mulitnodular goiter
  • Night sweats
  • Pain in hands, especially when exposed to cold
  • Palpitations after eating
  • Periods of severe fatigue
  • Plantars fasciitis
  • Puffy fingers
  • Skin tags
  • Snoring
  • Thin brittle nails with ridges going both ways
  • Tinnitus
  • Weight gain

Mental symptoms:
  • Anxiety
  • Attention span? What attention span?
  • Brain fog
  • Comprehension difficulties
  • Cry at anything
  • Depression
  • Disorientation when driving
  • Forgetfulness
  • Irritability
  • Long/short term memory loss
  • OCD
  • Zero libido

I have a large nodule (4.7cm) in my left thyroid lobe and several smaller ones in my right lobe. The larger nodule has been dx'd as benign after 2 FNAs. All my thyroid test results are well within "normal" ranges, including antibodies. I've been dx'd with CFS, but I don't think the dx quite fits. I've also been dx'd with borderline adrenal fatigue, iron deficiency, vit D deficiency, low copper, and elevated levels of mercury, cadmium, arsenic, lead, thallium, and manganese. My test results are below, although I'm not too sure just how relevant they are to Lyme:

6/5/2007
Ferritin - 7 (10-291)
Vit D - 13 (25-80)
FT3 - 2.99 (2.30-4.20)
FT4 - .95 (.89-1.76)
TSH - not tested

7/25/07
Ferritin - 27 (10-291)
Vit D - 28 (25-80)
FT3 - 2.82 (2.30-4.20)
FT4 - 1.13 (.89-1.76)
TSH - 1.24
Iron - 56 (.35-5.50)

I'm currently seeing a holistic MD who has me on a nutrition plan and supplement protocol. In the 2 months since starting these, I do feel a little better. The fatigue has lifted somewhat, I can think clearly enough to read books now, and I haven't had a single headache since. However, everything else is pretty much the same. I'm being tested for Celiac later this month, due to having nutritional deficiencies and some GI symptoms.

I'd really appreciate any feedback you could offer. Do you think it's worth bothering to get tested? Does this sound like Lyme to you or am I grasping at straws here? Part of me feels that everything I'm going through right now has a base cause, rather than being several different things.

Thanks in advance!

 
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Old 09-02-2007, 02:28 PM   #2
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Re: Should I bother getting tested?

Hi Nyxie. I am sorry you have been dealing with so much. I know it is frustrating.

Have you posted your thyroid results on the thyroid board? Even though your results are in the normal range, there seems to be room for improvement. I have Hashimoto's and my results have been "normal," but they are were not normal for me. I am still learning about thyroid disorders, but from what I understand many people who have one feel their best when their Free T levels are in the upper 1/3 of the range. So as you can see, there is room for imporvement in your levels. Many of your symptoms sound like they could be thyroid related to me.

I believe the low ferritin and Vitamin D can also cause fatigue. Are you taking iron and Vitamin D?

I believe that Pennsylvania has the third highest number of Lyme disease cases in the country. You may also want to have this checked out. Some people, inlcuding myself, have Lyme disease and a thyroid disorder. Not fun!

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

When Lyme disease is a possibility, it is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of 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. Babesiosis can cause night sweats.

If you need a doctor recommendation, let us know.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Do not give up! You will find out what is wrong. Keep us posted okay?

Last edited by ticker; 09-02-2007 at 02:29 PM.

 
Old 09-02-2007, 03:25 PM   #3
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Re: Should I bother getting tested?

Hi Ticker! Thanks so much for your quick reply. I honestly feel like I'm grasping at straws here. You're so right! It really is frustrating! Some days, I feel like walking into a hospital and shouting "who do I have to *bleep* to get a diagnosis?!".

I'd posted my labs on the thyroid forum and got pretty much the same response, which I agree with. My FreeTs are both less than midrange. I was on 3/4 grain of Armour (to try to shrink my nodules, not for symptoms), but due to the iron deficiency and adrenal fatigue, was having problems while on it so had to stop. Haven't been on any thyroid meds for 2 months and docs still say my levels are fine. Antibodies tests were negative.

The holistic MD has me on 75mg of iron, 2000 IU of vit D, and 15 minutes of sunshine a day with no sunscreen. I'm also taking a slew of other supplements in order to try to deal with some of this other stuff.

Looking at the symptoms list you posted, so many symptoms overlap with so many other disorder/illness symptoms and it's hard to tell where one stops and another begins. I get the creaky/crackly neck, although it tends to be a bit stiff, rather than sore. I also get hangovers disproportionate to the amount of alcohol consumed. Sometimes they can last up to 3 days after just 3-4 drinks. Guess who doesn't drink much anymore?

Thank you for the book recommendations. I think I'm going to have to look into this a bit more before I decide whether to go through the Lyme testing or not. I usually try to learn as much as I can before seeing a dr about a particular subject. That way, I can tell in the first appt or two whether we're wasting each other's time.

Thanks again!

 
Old 09-02-2007, 06:10 PM   #4
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Re: Should I bother getting tested?

Hi Nyxie. It can be hard to sort things out. You may want to consider getting another opinion about your thyroid. I have found that finding a knowledgeable thyroid doctor can almost be as hard as finding a knowledge-able Lyme doctor (though not impossible).

Lyme disease can cause bad hangovers. I don't blame you for not drinking much when it makes you feel so awful.

Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses is an on-line document.

I hope you get answers soon.

 
Old 09-02-2007, 07:46 PM   #5
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Re: Should I bother getting tested?

nyxie i have all the symptoms u have with a underactive thyroid which im trying to treat with armour right now. I gonna probably rule out lyme just to be sure. But I can say before I went hyper thyroid I felt a 100% at times when my medw ere right. But right now i feel like crap and want to rule it out anyways.

 
Old 09-03-2007, 03:31 AM   #6
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Re: Should I bother getting tested?

Ticker,
The holistic MD is my 3rd doc in 5 months. I fired StupidEndo because she was a patronizing arrogant idiot and my ENT (Dr Doofus) is useless except for scheduling ultrasounds and FNAs (trying very hard not to start a rant here). I'd really like to stay with the holistic MD since he seems to know (more or less) what he's doing. I'm due to see him later this month, so I'll talk with him about starting up on Armour again. He's pretty good about letting me manage my own healthcare. He keeps a watchful eye on me and offers advice and treatment alternatives. Since I'm so sub-clinical, I think it'll be close to impossible to find someone else to treat my thyroid.

Re: the hangovers - I was concerned for awhile that it might be liver-related, but not sure anymore. Then again, if I do have Celiac, it might be a reaction to the grains in what I'd been drinking. I'm getting both an endoscopy and colonoscopy on the 12th of this month and they're going to be doing a small bowel biopsy during that time to check for Celiac. Guess it'll at least be one more thing to cross off the checklist.

Coincidentally, I saw a program last night that featured Dr Burrascano. Think the program was "Mystery ER", where they followed the case of a woman who'd had untreated Lyme and a ton of co-infections for more than 10 years. She finally saw Dr Burrascano, went through 2 years of antibiotic treatment, and is now doing fine.

Thanks so much for your advice and encouragement! Will keep you posted as things develop.

 
Old 09-03-2007, 03:48 AM   #7
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Re: Should I bother getting tested?

wdiguy -
I've been following your story over on the thyroid board. Wow! You've had a lot going on the past few months. Hope you find some answers and feel better soon.

 
Old 09-03-2007, 05:20 AM   #8
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Re: Should I bother getting tested?

Yeah you can probably see a rollercoaster effect with me feeling better then not. I also got tested four months ago for celiac which came back negative. I was almost sure I had that but I guess not. I dont get why its so hard for me or anyone else to feel better. We try every test in the world. Im 25 now and this has been going on since I was 22 years old. It sucks and me testing Lyme is probably the only test I have not done. I do go to the allergy doctor this thursday since I am congested everyday and now have black rings under my eyes. I could possibly have untreated allergies which I never thought could do anything to me. Well I hope everything works out and I will post my labs for the western blot igenex labs on here as soon as possible.

 
Old 09-03-2007, 09:19 AM   #9
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Re: Should I bother getting tested?

Hi Nyxie. I have also seen several doctors for my thyroid. For me, endos are the worst! You may be better staying with the holistic MD.

I have seen the Mystery Diagnosis, it is a great episode!

Hang in there okay?

 
Old 09-03-2007, 09:20 AM   #10
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Re: Should I bother getting tested?

Hi wdiguy. Have you had the Western Blot done at IgeneX?

 
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