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lookingtoheal
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/26/2009 2:27 PM (GMT -7)   
Hello.....I just didn't know where else to turn and decided that people with the same issues usually have the best input.  So here goes....Last November I was diagnosed with Lymes.  Was put on 2 rounds of antibiotics.  Blood work after that showed now signs of Lymes according to doctors.  I was seeing just a family practitioner.  Before being diagnosed I had severe headaches...no other real symptoms...not even the "infamous rash" I was told everyone gets.  Headaches to bad at one point it brought me to the ER.  Anyway, lately my body has been really achy all over, feet and ankles, especially achillies tendon, hurt so bad in the morning I can hardly walk.  Finger joints sore and swollen.  Running them under warm water does help somewhat.  Bending knees hurts.  Started going to a chiropractor recently.  He workes on my feet alot which helps for a day or two.  I saw a neurologist twice who put me on Lortab for headaches, but will no longer prescribe anything as he says my symptoms are probably due to stress issues I've had previously in my life.  Really, I don't feel stressed.  My life now is straightened out more than it ever was.  I started taking Fish Oil, 2400 mg. a day for the last 3 days.  No change yet.  Last blood draw shows no sign of lyme, so doctors are not really treating it.  If no Lyme shows in blood does that mean it's gone??  Can there still be after effects?    Sometimes I think it may be all in my head, but I have never been this sore in my life, and I am active.  I am 48 years old, ride bike, and hike.  I'm trying not to let this slow me down, but it's really difficult.  I have been taking Aleve now, but it really doesn't help.
Can someone relate here?  Any ideas would be appreciated. I feel so in the dark about all of this.  I'm also very fatigued lately and have to force myself not to take naps all the time.  I do not have any young children to run after, so that is good.  I'm starting out here without a clue as to what I should do next.  Thanks ahead of time for any info........

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/26/2009 4:34 PM (GMT -7)   
Negative test results for Lyme do not mean you don't have it. The tests are not accurate enough for that.

There can be long-term effects after the Lyme is gone, but also the Lyme may still be there - it is not as easy to get rid of as most MD's think...

Vitamin D seems helpful for some with pain - glad you are on the fish oil (look at the label to find out how much Vitamin D it contains). It may take a few weeks before you notice a difference.

Suggest you look into finding a Lyme-Literate MD (LLMD) or Naturopath (LLND) to consult with about treatment options for your current symptoms. If you make a new topic post here with the name of your town and asking for LLMD's there, it is likely someone will respond with suggestions.

Good luck,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, intermittant pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, homeopathy.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/26/2009 10:28 PM (GMT -7)   
lookingtoheal,

welcome to the board. I to suffered from bad headaches. for yrs i had one last me nostop for over 2 yrs witch the added migraine for kickers. i whent to a nuero who gave me Gabapentin. i have now been on it for 2 1/2 months and i still have headaches but nothing compaired to what they were. he is now thinking of upping my dose. and i just had a EEG test. no report back on it as of yet. i hope this may help lead you to what you can bring to the table when you next see your nuero. it cant hurt

wishing you well, adding you to my prayers
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/26/2009 10:30 PM (GMT -7)   
LookingToHeal,

Welcome to the forum!

Have you found a good Lyme Literate Medical Doctor yet? You should post your email so that members can tell you the contact info privately. You can email: stephanie@turnthecorner.org to find a Lyme Literate Doctor in your area. You can also go to: www.turnthecorner.org/bod.htm and ask for further sugestions.  

For more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


lookingtoheal
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/27/2009 7:17 AM (GMT -7)   
Thanks for all your info.  I didn't even know there was such a thing as a Lyme Literate Doctor out there.  I live in Southwestern Wisconsin halfway between LaCrosse and Madison.  If someone knows of a doctor around those areas, please e-mail me at maustin43@centurytel.net    .   This morning my joints are really sore in my hands and feet.  I walk like a 90 year old women!!!  Tried Bio-freeze last night (like BenGay), but it doesn't even seem to touch it as it feels so deep.  Any other input would be greatly appreciated.  thanks


Life is all about attitude
 Listen to your heart before anyone else


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/27/2009 7:26 AM (GMT -7)   
Hi lookingtoheal,

What test did your doctor do for Lyme disease. The ELISA test is extremely unreliable. If you want more reliable testing, you should go through the Igenex lab in California. They specialize in testing for tick-born diseases, especially Lyme disease.

If you see an LLMD, they will almost certainly ask that you get tested through Igenex. You can do it on your own as well-it you phone them, they will send you a free testing kit (note, the test itself is not free, just the kit), and they are very helpful in explaining what the different tests are.

But you will need an MD/ND/etc. to sign the requisition form for the blood test.

Best of luck!

Nicky

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/27/2009 10:32 AM (GMT -7)   
LookingToHeal,

I used to use biofreeze all the time but I found something better while working for a Chiroprator. It is call Sombra and it gets really deep down into the muscle. I LOVE it and use it every night.

Btw, I have no vested interest in this product.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


tickedoff
Regular Member


Date Joined Jun 2009
Total Posts : 56
   Posted 7/28/2009 9:05 AM (GMT -7)   
welcome lookingtoheal,

wow, you sound like my husband...i often say he walks like a 85 year old man...he is 45...his symptoms got really bad after he had surgery on a swollen right index finger...he had the joint fused...we did not know about the lyme at the time!!! (he had many steroid injections after the surgery and we have come to learn that steroids and lyme go together like gasoline and a match)...lyme exploded in his body...ankles, knees so bad some times, he hobbles out of bed for no reason...extremely sore muscles, also started with neurological problems, severe headaches, vision issues, sensitivity to light and sound very bad, ringing in ears...you must find a good llmd in your area...you got good advise in the previous posts...you will learn a lot from this site...you must educate yourself and be proactive in your treatment...will pray for you...and will continue to watch your posts...let u know how you make out...Carol
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