I need help in Dallas

[pjval]

It's my year of "5"s.... I'm a 50 yr old woman, mother of 5, grandmother of 5;  I'm 5'4"  132 lbs. I walk 5 miles and jog 2 miles every day. I work out at the gym 3 days a week, bowl on a ladies team, and own my own business, a bridal boutique. I'm also health conscious and energetic; My hubby and I LOVE camping and are aware of ticks and take precautions. But last year we came home from a camping trip noticed behind my knee a small bump that felt like a hard spot in the middle. Thinking of ticks (we've had them before but they were really big and easily seen) he looked at it for me and using tweezers pulled a tiny piece of skin off my leg. He said he thought it was a sliver of wood from the picnic table.
Long story short:  I get the flu for the first time in 8 years that wipes me out. I recover but have no energy. I just turned 50 (missed my own birthday party because of the flu) so maybe it takes longer to recover now.  2 weeks later, still no energy. Have my yearly check up. Gained 5 lbs but everything is good. Blood tests are normal. Still tired and now having headaches and neck pain. month later back to dr with headaches and tell her about fatigue. Diagnosis: allergies and sinus infection. Neck pain is stress. I don't feel stressed but she says my body does. Amoxicillian for 10 days; singular and nose spray daily for allergies. Feeling better but still tired. 6 weeks later headaches return and more tired than ever. Dr does blood work, says I have hypothyroidism. Add synthroid to the list of meds. headaches don't go away and hips hurt when walking. haven't jogged in 3 months, no energy. Had a bout with intestinal pain and diareah that comes and goes. Dr. says I have IBS and possibly arthritis. Not unusual she says at my age and with my history of sports etc. Get a bone density test... my bones age is 41. So why do I have arthritis? schedule colonoscopy for later in the month.  few weeks later I see a dk pink ring on my forearm. then another near my armpit. My daughter was visiting so I call her into the room. I take off clothes and have rings on my inner thighs and buttocks. I walk into dr without calling demanding the nurse see me, no problem. I'm visibly upset, why is all this happening? Dr comes in excited.. LYMES rash, it 's the first case she's ever had so she calls in the other drs and nurse to see it. Glad I was able to entertain them.Lyme test comes back 3 days later posititive, 2 weeks of doxycycline (sp?). Finally I feel better yippee!  working out again and start jogging again. 5 weeks later pull a muscle in my leg. Damn. playing with my grandkids I pull a muscle in my shoulder. 2 weeks later my knees are hurting and my hips hurt again. Then my hands are swelling. My headaches are back worst than ever and I have chest pain. Dr. says I have hypertension, blood pressure is out the roof.. 170/99. Lyme test is negative this time, I'm cured of that thank God.  3 weeks later I'm diagnosed with fibromyalgia, more meds.  I'm convinced I have Lymes still but the dr says I don't. It doesn't make sense that a healthy, athletic and active 50 yr old gets all these ailments in an 7 month period does it?? I mean I can't walk without help in the morning. My knees, hips, shoulders and hands kill me. The streroids didn't help, in fact it made it worst. Now I'm having weakness in my legs. I can't play with my grandkids, I can't sleep but I'm exhausted. I can't even clean the house. I went to another dr on Friday with my history, he gave me anitdepressants. I left the perscription on his table and walked out.
PLEASE... does anyone know of a dr in Dallas that has experience with Lyme disease? I can't live like this and it's NOT depression.

Thanks, Pam

[JackieCalifornia]

Welcome to MedHelp Lyme --

I am sorry to hear about your stepfather.  The person your message is addressed to, skarey, has not posted here for a while, as I recall, but the rest of us would be glad to share what we have learned.

What would you like to know about Lyme?  

[kellibellee]

We believe my step dad is suffering from lyme disease. We would be forever grateful for any advice or knowledge you have. Thank you.

[JackieCalifornia]

I am so sorry for all you have been through.  

I can hardly wait for the day that all these dense docs get their comeuppance.

If you have not found the ILADS [dot] org website yet, it is the main organization for Lyme specialists who understand the disease (as much as anybody can, since it's a mystery still being unraveled.)

You mention overactive immune system a couple of times, but I can't tell from the context whether that is what you are told you are currently experiencing.  ??  

Take care --

[kanga1427]

I have just been recently diagnosed with Chronic Lyme, after being ill for 14 years with auto-immune diseases and even worse health issues caused by side-effects of the treatments. Like you I went from being a healthy, very active person, to one who became a bed-ridden lump of human flesh after a super-flu like infection. Everything about my body was affected from my joints, muscles, cental nervous system, major organs etc. I can't think of anything that was or has not been affected. I was so sure that there had to be an underlying cause to my sudden and devastating illness...even my eyes hemorrhaged. Doctors, including rheumatologist did not believe that I would still need antibiotic therapy, but instead began killing off my over-active immune system with high dose prednisone, chemo drugs, etc. Of course I by then tested negative for Lyme Disease and I lived in Hawaii, so they thought there was no way that I had Lyme. My career is aarchaeology/exploration geology...working constantly outdoors...in unprotected conditions with God knows what kind if germs in the soil excavating and in crossing streams etc while hiking through jungle conditions. I was the suppossed dumb one for insisting that undetlying causes should be looked at instead if throwing treatments at symptoms. I only became worse health-wise due to all their treatments. I have been hospitalized several times for serious reactions to those treatments, and almost losing my life. After one dose if Remicade I ended up in Cardiac ICU for 16 days after developing Stevens-Johnson Syndrome and have since had several bouts of SJS after taking drugs that had previously not caused serious problems. Now I can no longer take any of the type if drugs that Rheumy docs like to use...Thank God. I ended up relocating to the mainland for hopefully better medical care. I have finally found a doctor that uses Alternative Treatments such as Antibiotic Therapy on long term basis after she tested me for Mycoplasma Pneumoniae. I also take ATP/Glutathione by IV and Gamma Globulin IM injections on a weekly basis. Plaquenil has been added to my Long-Term  Antibiotic Therapy which is Doxycycline alternating periodically with Biaxin and Probiotics. I completely understand your anger...I'm angry too at the closed-minded medical community out there. I also was not having my severe 24/7/365 pain dealt with and suffered needlessly for years due to doctors not wanting to give me proper opiode pain medication. To them, it was much more prudent to treat my pain with "Off-Label" drugs that were used to treat Epilepsy, Stroke Victims,etc until I felt like a complete zombie who could not add 2 + 2. I am now being properly treated with narcotic opiods at a high dose and can actually get out of bed...am so much more cognizant and have a more normal semblance of life than I had for 12 years. The doctors all agreed that my pain level was that of a terminally ill cancer patient, but since I did not have cancer they choose to let me suffer. It would have been more humane if I had passed away due to the needless suffering. I got to the point that I no longer wished to continue with such a lack in quality of life. The final straw came after I had been complaining for months about an even more extreme increase in my leg muscle  pain. It was being ignored as being part if my "normal intractable chronic pain. It turned out to be another drug related problem. Statin-induced Rhabdomyolysis from taking Zocor with Tricor. It affected my kidneys very adversly and caused permanent muscle damage on my right side. It is called Polymyositis. Something else to go with my Avascular Necrosis in both hips caused by Prednisone. I need hip replacent surgery, but Orthopaedic surgeons will not do surgery until I am free of the Mycoplasma Pneumoniae. I feel so screwed and angry with the general medical community attitudes and I don't know what I would have done if I had not found my new doctor. She understood my  pain as she also suffers from auto-immune  disease. Main stream doctors don't care for these Alternative doctors who think and work outside the box. I honestly believe that main stream doctors can be so narrow-minded that they can actually make their patients so much more ill, with throwing these immune-suppressing drugs at their patients all to keep from treating pain properly, that we end up worse off than what the actual disease process will cause. Sorry for my rant, but I could so relate to your messages and I do apologize for not being able to read iver my message prior to posting, as I am doung this from my phone instead of my computer. I wish all of you who have posted her  all the best in life and may you all find good doctors and renewed health. Please consider taking the CD-57 Test for Lyme from Labcorp. It is a new test that will diagnose Chronic Lyme.

All my best to you,
Kanga

[kanga1427]

I have just been recently diagnosed with Chronic Lyme, after being ill for 14 years with auto-immune diseases and even worse health issues caused by side-effects of the treatments. Like you I went from being a healthy, very active person, to one who became a bed-ridden lump of human flesh after a super-flu like infection. Everything about my body was affected from my joints, muscles, cental nervous system, major organs etc. I can't think of anything that was or has not been affected. I was so sure that there had to be an underlying cause to my sudden and devastating illness...even my eyes hemorrhaged. Doctors, including rheumatologist did not believe that I would still need antibiotic therapy, but instead began killing off my over-active immune system with high dose prednisone, chemo drugs, etc. Of course I by then tested negative for Lyme Disease and I lived in Hawaii, so they thought there was no way that I had Lyme. My career is aarchaeology/exploration geology...working constantly outdoors...in unprotected conditions with God knows what kind if germs in the soil excavating and in crossing streams etc while hiking through jungle conditions. I was the suppossed dumb one for insisting that undetlying causes should be looked at instead if throwing treatments at symptoms. I only became worse health-wise due to all their treatments. I have been hospitalized several times for serious reactions to those treatments, and almost losing my life. After one dose if Remicade I ended up in Cardiac ICU for 16 days after developing Stevens-Johnson Syndrome and have since had several bouts of SJS after taking drugs that had previously not caused serious problems. Now I can no longer take any of the type if drugs that Rheumy docs like to use...Thank God. I ended up relocating to the mainland for hopefully better medical care. I have finally found a doctor that uses Alternative Treatments such as Antibiotic Therapy on long term basis after she tested me for Mycoplasma Pneumoniae. I also take ATP/Glutathione by IV and Gamma Globulin IM injections on a weekly basis. Plaquenil has been added to my Long-Term  Antibiotic Therapy which is Doxycycline alternating periodically with Biaxin and Probiotics. I completely understand your anger...I'm angry too at the closed-minded medical community out there. I also was not having my severe 24/7/365 pain dealt with and suffered needlessly for years due to doctors not wanting to give me proper opiode pain medication. To them, it was much more prudent to treat my pain with "Off-Label" drugs that were used to treat Epilepsy, Stroke Victims,etc until I felt like a complete zombie who could not add 2 + 2. I am now being properly treated with narcotic opiods at a high dose and can actually get out of bed...am so much more cognizant and have a more normal semblance of life than I had for 12 years. The doctors all agreed that my pain level was that of a terminally ill cancer patient, but since I did not have cancer they choose to let me suffer. It would have been more humane if I had passed away due to the needless suffering. I got to the point that I no longer wished to continue with such a lack in quality of life. The final straw came after I had been complaining for months about an even more extreme increase in my leg muscle  pain. It was being ignored as being part if my "normal intractable chronic pain. It turned out to be another drug related problem. Statin-induced Rhabdomyolysis from taking Zocor with Tricor. It affected my kidneys very adversly and caused permanent muscle damage on my right side. It is called Polymyositis. Something else to go with my Avascular Necrosis in both hips caused by Prednisone. I need hip replacent surgery, but Orthopaedic surgeons will not do surgery until I am free of the Mycoplasma Pneumoniae. I feel so screwed and angry with the general medical community attitudes and I don't know what I would have done if I had not found my new doctor. She understood my  pain as she also suffers from auto-immune  disease. Main stream doctors don't care for these Alternative doctors who think and work outside the box. I honestly believe that main stream doctors can be so narrow-minded that they can actually make their patients so much more ill, with throwing these immune-suppressing drugs at their patients all to keep from treating pain properly, that we end up worse off than what the actual disease process will cause. Sorry for my rant, but I could so relate to your messages and I do apologize for not being able to read iver my message prior to posting, as I am doung this from my phone instead of my computer. I wish all of you who have posted her  all the best in life and may you all find good doctors and renewed health. Please consider taking the CD-57 Test for Lyme from Labcorp. It is a new test that will diagnose Chronic Lyme.

All my best to you,
Kanga

[JackieCalifornia]

There is a Texas Lyme Disease Assn which may have a referral function at their website, and you can also search/google  -- Dallas LLMD -- and see what you get --

[alf0]

Please send me a list of LLMD's in the Dallas area
alf.***@****

[JackieCalifornia]

Welcome.  I don't recall any of the people in the message chain having been here lately, but someone might respond.  If not, try searching online 'texas lyme disease association' -- they even have a facebook page.   I have read that lymenet [dot] org has a referral function to find a Lyme doc.  You can also just search 'lyme dallas' or wherever you are and see what pops up, but that's kind of potluck.

For what comfort it may be, there are quite a few people here who have been told they have or may have MS.  The history pjval relates at the top of this post is sadly not uncommon.  You could also try sending a private message to the people in the links above by hovering over their screen name and clicking on 'send a message'.  If they are still registered with MedHelp, that message will go through to their own email.

Best wishes to you  --

[CHollister]

Curious if you ever found a dr in Dallas. I think my husband has LD as well. We have been told that it is possibly MS for 4 years now. Your feedback is greatly appreciated!

[Lymiesue]

Get on one of the several Lyme disease associations websites and look up doctors in your area.  I live in Maine and have had this disease for 10 years.  It was treat wrong and I will never be the same, but it can be managed.  Please remember that time is of the essence.  If you can't find a dr. in your area, call one in New England and see if they can give you a referral.  Good luck and take good care of yourself.  

[FloraToadfoot]

You sound just like me and I have recently been diagnosed with Lyme disease + co-infections of Q Fever and Rickettsia in South Africa.  I've been ill for 15  / 20 years and been wrongly diagnosed and treated until Feb 2010.  Am now on 2 x tetracyclines for 7 days, then 21 days for treatment of fatty liver. The tertacycline is changed every month to accommodate co-infections and also different stages of the bacterial growth. Start my 6th month of treatment on Monday  Have been told I have everything from MS to epilepsy for last 10 years.  Can't help you with a doctor but there are so many variations of treatment depending on which doctor you see.  My doctor is Lyme literate.  You can Google her and find lots of info about her work.  Dr Cecile Jadin is highly recognized around the world for her work on these infectious diseases.  Don't know for sure Lyme is curable but you can get it under control. Good luck and take care - Lyme is not for sissies.... !!
Pam Thomson

[pjval]

Thank you wonko, EricaO lives just a few miles from me and I did send her a message... thanks!!!

[JackieCalifornia]

So sorry to hear of your situation.  Sadly, you are in good company.

If I were in your shoes, I would NOT take any more steroids until your diagnosis is clear:  steroids are contraindicated in Lyme, because they suppress the immune system.  I'm not a medical person, and this is based solely on reading I have done.

Your ability to lay out your symptoms so clearly will be very helpful to your NEW doctor.

Above all, don't give up trying to get well:  we all get discouraged, we all get confused, but yank up the socks and keep going.  We're here when you need to vent or whatever.

Best wishes -- J.

[pjval]

Thanks everyone. I know this is Lyme disease and for my dr. of several years to say it's depression... just doesn't make sense. My hubby found this site. This is so wrong to thing that I was diagnosed correctly but not treated correctly and now may suffer permanent damage? OMG. I feel so stupid but I looked it up in the medical journal and all it said was to treat with Doxy for 2 weeks and it is curable. I didn't look anywhere else. She should've known the continued symptoms. A healthy woman doesn't go from perfect, no pristine, health to a woman with multiple conditions and in constant pain. I lost a son at 8 months old to a misdiagnosis and to think it's happened again... I am beside myself in anger. I don't mean to lash out here but OMG. I will look into LLMD, thanks.

[patsy10]

Welcome. I'm not a doctor but your story sounds like textbook lyme that was not treated long enough.  Sadly, now you are a year into it so it will be even harder to treat.  Hopefully you will find a good doctor from the info skarey sent you.

Please keep us posted.

[skarey]

Pam,
  I am SOOO sorry you are feeling like this.  You definately need to find a LLMD (lyme literate Medical Dr).  These dr's beleive in chronic lyme and will do long term treatment (until symtoms are gone).  The lyme tests are not reliable.  Just because your last test was neg doesn't mean the lyme is gone.  You've had lyme and had the POS test and bulls eye rash.  A LLMD would begin treatment immediately and will test for co-infections as well.  

I have a list of LLMD's in TEXAS.  I will PM them to you.  Good luck!

Skarey

[wonko]

We have a member here who checks in once in awhile and is from Texas (though I'm not sure which part?).  Here is a link to her profile, perhaps if you leave her a note or send her a message she may be able to advise on an area doctor:

http://www.medhelp.org/personal_pages/user/723952