Avatar universal

Do I have Lyme

I am new to this site.  I was diagnosed with Fibromyalgia in 2000 and it was mostly in my back with tight muscles and pain.  I have a history of chrondrosacroma in my Rt. Femur with surgery 2003 and no further treatment needed.  I fractured femur 6 wks. after surgery and dr. recommended no surgery just use plastic leg brace to stabilize fracture.  In between July & Dec. 2003 I also had 2 stress fractures and it took 6 months for fracture to begin to show signs of healing.   Unable to work for 7 months.  In Nov. 2007 pathological fracture while running on treadmill.  Another extensive surgery to repair fracture, remove rodding in pieces and replace with much stronger rod.  By May 2008 dr. diagnosed non-union and needed additional surgery to use allograft from illiac crest to insert into non-union and this was healed in 6 months.  Since 2003 have had significant pain in rt. leg due to multiple surgeries in same site and have significant muscle and tissue damage and gait is abnormal because of pain.  Also have chronic low back pain with spondelosis and facet joint arthritis and degenerative disk disease.  May of 2009 had facet joint injections and also epidural block for pain.  Also have Hashimoto's antibodies take synthroid, osteopenia, Sympathetic Pain Disorder in Rt. leg, Meniscus tear Rt. knee that needs surgery, prolapsed uterus in 1996 to had hysterectomy and in 2002 had more pelvic pain so had Ovaries taken out and am now taking estrogen replacement, multiple  surgeries for endometriosis, gall bladder removed 2000, multiple arthoscopic procedures on both knees, irritable bowel taking miralax daily and laxative 2-3 times week to have normal bowel movement.   Also diagnosed with Herpes Type 1 Virus in May 2009 in the rectal area with sores that would go away and come back so now taking Valtrex 500 mg. once daily.  No recurrence sine Sept. 2009.  This first started with an abcess in the vaginal area which was lanced but no drainage.

Severe Neck pain with muscle tightness began in summer 2008,  have had trigger point injections with no relief and adjustments from chiropractor  with no relief.  Excessive sleepiness and fatigue began in 2008 which I attributed to all my meds.  Sleep study in Oct. 2009 no Sleep Apnea or Restless leg but had to take a benadryl when I had the test because I started itching from the hypoallergenic lotion they used to afix electrodes to my skin and scalp.  So results were probably not accurate.  Dr. has put me on Provigil so that I can stay awake to and from work.  Before could not keep my eyes open and if I was stuck in traffic it was impossible to stay awake.  

Pain started increasing in Nov. & Oct. of 2009 and in Dec. 2009 it was becoming unbearable.  My legs and feet would have burning pain and could not walk because feet hurt very badly.  Pain moved up to fingers, hands writs and arms with burning, tingling pain and am unable to open childproof caps in meds. or write without pain, and cannot open jars or twist open anything without pain and finger joints are swollen all the time.  Also in spring '09 I am not sure why this happened but it felt like shingles in my legs... it hurt so badly for a few days to have my clothing come in contact with my skin.  Also have reactions to just about any meds. with hives and itching and skin always has redish streaks most noticable in hands and arms.  Have numerous fatty tumors on all extremities and they are now hurting.  Pains meds do not help, take trazadone to sleep, nuerontin 800 mg. at bedtime, xanax, cymbalta, darvocet, tramadol, Provigil, synthroid, estrodiol, have now been given Fentynol Patch 12 mcg. change every 3 days, Tramadol ER, you name it I have been on it.  Allergic to Voltaren gel, Relafen, Dilladid breaks out in hives, Morphine causing extreme itching, etc,

Rheumotology workup negative for RA, Lupus, MCV in high zone, EMG for Carpal Tunnel negative, Trigger Point injection in neck did not help and have continuous neck pain with limited movement and headache.  Chiropractor said I am much more tender to touch than other patients with Fibro.  Lyme titer test was 1.02 on Jan. 12th, Western Blot negative but one strand D41 of DNA showed antibodies present but lab report classified results as negative.  

I guess that's about it.  As you see I have multiple health problems however everything has gotten much more painful since Dec. of last year.  I also took 2 rounds of Prednisone in May 2009 for my severe back pain which did help but pain would come back when I went off.  Also took 2 rounds of Prednisone in Dec. 2009  & Jan. 2010 and after a few days I would feel better but after I finished the dose pack the burning and tingling and over all pain came back.  In Dec. 2009 I was prescribed Adderall to help with my fatigue and I thought that might have been the cause of increasing my pain so I was changed to Provigil.  I think there might more things that would be significant but I can't remember them right now.  Also cannot remember how to spell words that would normally cause me no problems.  I realize this is quite a bit of information but I wanted to give as complete a history as I can.

If you have any advice that you can give me I would greatly appreciate it.

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Avatar universal
It sounds like you have really been through the mill.  I am sorry to hear of all your suffering, and to not have a satisfactory diagnosis yet makes it worse, I am sure.  I dragged around for about six months before getting a diagnosis, and I can't imagine it going on as long as you have been hurting.

None of us here on this site are medically trained, as far as I know, so you'll hear advice and opinions of all kinds.  My suggestion would be to find an MD who focusses on Lyme and related diseases, and to take your medical history with you when you go.

Many kinds of MDs can and do treat Lyme+, but what makes a so-called 'LLMD' [short for Lyme Literate MD] is that s/he takes a broader view of Lyme+ than so-called mainstream medicine.  Neurologists and rheumatologists are often dismissive of Lyme+ as anything serious, and many other MDs either know nothing or have a very narrow view of what Lyme may or may not be and how to test and treat it.

I see you are near Washington DC:  there is a good bit of Lyme in your area, so it would not be a surprise if you are infected, perhaps in addition to other medical problems.  (I too had an MD offer me Provigil when I was first ill, because I was so terribly fatigued.)

I would suggest that you locate an LLMD, for example, an MD who belongs to ILADS (International Lyme and Associated Disease Society) at ILADS [dot] org.  I believe there is a referral function there, where they will put you in touch with an LLMD in your area.  You can also simply google "LLMD Virginia" and there are a bunch of hits that may guide you to an LLMD for evaluation.

This doesn't mean you have Lyme, but an LLMD would in my opinion be more likely to recognize and diagnose Lyme+ if it is present, where other MDs are not trained to do so and indeed are too often prone to sneer at LLMDs and their patients. (I live with this myself -- it's quite unpleasant, unnecessary and counterproductive when my other MDs don't take seriously the effects of my Lyme+ infections.)

Best wishes -- let us know what you decide to do and how you get along.

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Avatar universal
It sounds very much like a situation that you are in.  I had been hunting for my answer to pain, joint swelling etc. for a year.  Tested for Lupus, MS,  told Fibromyalgia was probably the problem.  put a number of medicaitons that made me feel like I was in another world, and even given a pain medication to take daily (that was not going happen)  Was tested for lymes.  I live in an area that is very high in lymes disease.  My testing was very much like Jackie in Comment One.  It was stated that no I did not have Lymes.  I than spoke to a friend who has Lymes and suggested that I go to her Dr. that specializes in Lymes.  He sent my blood to be tested in California.  He stated that the bands of the blood need to tested in Lymes and very few placed do that.  There are 70 bans to be tested, and when I got the results back, it showed strongly that I had lymes.  I am now being treated.    My GP was very upset that I went this route, but after a year of suffering, being told that I was more or less crazy, I finally found an answer.  It has still been a slow process due to allergies to medicaiton, but as of this moment, I have felt the best I have in months.  So, don't give,a nd see someone that deals and understands the disease.  

Know how you feel
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