Husband has Chronic Lyme in KY need doctors

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

my3girls
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/22/2010 1:47 PM (GMT -7)   
My husband is deterirating everyday.  He is 28 years old. We can't get anyone to help us. Dr's say he has been treated with Lyme and should be fine now, but he's not. We live in KY between Louisville and Cincy.  Surely there is someone inthis area to help us.  any ideas anyone please

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/22/2010 4:41 PM (GMT -7)   
Hi my3girls,

Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at: phassan@optonline.net

If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org  You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/

For great info and links, please read the topic at the top of the first page of this forum titled, "New To Lyme?......Start Here!" It will help you get started learning about lyme.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/22/2010 4:50 PM (GMT -7)   
my3girls,

Did your husband have a tick bite that he recalls? How long ago? Did he get the bulls eye rash? What kind of doctor treated him and with what and how long? Did the doctor order a Western Blot blood test by Igenex Labs?

If you click my email icon I will be glad to send you a list of websites that provide LLMD referrals.

Gary

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/22/2010 5:46 PM (GMT -7)   
Gary,

I just wanted you to know that we have Dan's Mother helping us with LLMD referrels now. She works with highly respected LLMD's.
 
P.S.- I don't mind you helping because you have helped so much. I'm just letting you know.


Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 6/22/2010 6:51:24 PM (GMT-6)


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/22/2010 6:06 PM (GMT -7)   
CajunGrl said...
Gary,

I just wanted you to know that we have Dan's Mother helping us with LLMD referrels now. She works with highly respected LLMD's.


P.S.- I don't mind you helping because you have helped so much. I'm just letting you know.


Are you suggesting I no longer offer to provide links to websites that provide LLMD referrals? If I am no longer permitted to provide links to websites for people who are seeking LLMD referrals, just say it clearly and I will refrain from doing so. I rarely suggest a specific LLMD unless I know of one in their area, I just give links to websites where they can get referrals. I'm getting the impression you'd rather I no longer do this and leave this to Dan's Mother for this, am I wrong?

Gary

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/22/2010 6:35 PM (GMT -7)   
Gary,

No, I am not suggesting that at all. Did you read my P.S.? I was just letting you know that we have someone helping now. It has been a while since Ticker has helped, so I was letting you know.

Btw, is there any link that you think I should add to the list I have compiled?
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


my3girls
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/22/2010 7:03 PM (GMT -7)   
Thanks all for your help. Yes he remembers getting bit by tick last spring during turkey hunting season. He did recall a rash. He was treated with 3 weeks of antibiotics in may/june of 2009.

Since then he has had the following symptoms: headache,neckpaIN, facial numbness, pleurisy, chest pains, pain, dizziness, stiff neck, joint pain arthritis in neck, weakness, Extreme tiredness, very irratible, balance issues, rage, anger, ringing of ears, facial weakness, loss of strength, an the list goes on and on. He is going to have another western blot tomorro by a family physician but he said he's already been treated so theres nothing else to do.

This is so hard, I did email The Dans Mother person for referrals so hopefully we will get someone to help. thanks all

my3girls
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/22/2010 7:04 PM (GMT -7)   
Already been to the websites listed above I have already done alot of that research its just finding a doctor.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/22/2010 7:54 PM (GMT -7)   
my3girls,

Yes, like you said, it's very hard. I'm sorry for all the suffering your husband is going through (and you too). Many of his symptoms sound exactly like what I used to have. I know the anger and rage must be very hard on you, but remember, it isn't about you, it's this disease that does that. I remember when I felt the anger and rage coming on, I would tell my wife to please be aware of the fact that I'm ready to go off so please give me space. It helped her to be more sensitive during those times, and I made every effort to go outside, go to bed, take a bath or just isolate myself from her, or anyone else, so that I wouldn't take it out on her. This is a very vicious disease and it's not easy for the patient, nor the spouse, who has to live with. We are praying for you both.

You are right about the family physician, there is nothing he can do because he is not trained to treat Lyme disease. Although, he can order a Western Blot test for your husband (I'm surprised he's even willing to do that as most PCP's only order the ELISA test), but he won't know what to do once the results come back. This disease is more of a clinical diagnosis. Only a LLMD is truly qualified to diagnose this disease regardless what the test results show. Some people have a negative test result, but they still have Lyme disease. The best evidence that your husband has lyme disease is the tick bite AND the rash. The two together is more reliable, in most instances, than any blood tests that he could get from a laboratory.

Blood tests are hit and miss. No matter how good the lab is, the only way to know for sure is based on the clinical diagnosis from your LLMD. He/she is the only one who will know how to treat it. Three weeks of abx doesn't even begin to scratch the surface of this disease, but most PCP's only do what they've read about based on guidelines put out by IDSA and not ILADS. It's complicated to explain here, but in time you will come to understand that this is a very controversial disease and there's a big difference in the way the two groups treat this disease. The only way your husband will get well is to be treated by a ILADS LLMD.

My email address is dmw@brightok.net. If you are interested in getting a couple of links to websites that provide LLMD referrals, I will be glad to send them to you. Your husband has apparently had this disease for at least one year, if I understand you correctly. Although, it's harder to treat once it's gone beyond 6 months, it's still treatable, and the sooner he get's treated by a qualified LLMD the better off he'll be. It's still early in the game, his chances of beating this disease is excellent!

Keep us posted and let us know how the Western Blot test turns out.

Gary

my3girls
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/22/2010 8:55 PM (GMT -7)   
Thank you so much!! I have gotten a one referral from websites but none very close. Does medical insurance cover the visits to the LLMD's? My email is summeryoung04@yahoo.com if you want to email a doctor. I told my husband there is no use in seeing our family physcian again. He has ordered some other tests like thryoid and b12 I am like thats useless. We have to get to a LLMD. Thanks for your input in the previous response.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/23/2010 11:31 AM (GMT -7)   
my3girls,

Not all LLMD's take insurance. I was lucky each time that the LLMD's I saw took insurance. Some doctor's have to stop taking insurance because the insurance companies start questioning why they are giving such large doses of antibiotics for so long. Insurance companies do not want to pay half the time, so the doctor is forced to stop taking insurance to save them trouble.


Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 6/23/2010 3:15 PM (GMT -7)   
HI my3girls & welcome to our forum!
I am sorry for everything you are going through right now - we really do understand how hard it can be.

I just wanted to add that thyroid & B12 level tests could be helpful, although it would probably be better if the LLMD ordered the tests, as they will better understand what the results mean to your husbands' condition.

BTW- Thank you for researching & joining this forum in order to help your husband. This insidious disease has broken many families.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 16, 2017 9:37 AM (GMT -7)
There are a total of 2,906,123 posts in 318,924 threads.
View Active Threads


Who's Online
This forum has 158263 registered members. Please welcome our newest member, durga padhy.
330 Guest(s), 12 Registered Member(s) are currently online.  Details
19tarpon47, notsosicklygirl, Rick1310, PeppermintTea, Hoagie, 1000Daisies, The Dude Abides, Progressing, Jerry_Delaware, ExplosiveKittens, joee, BOB 46