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Old 11-08-2012, 08:51 AM   #1
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My Long, Weird, Confusing Story... Help, Please!

My story is a doozy so I apologize upfront for any confusion, frustration or tears this may cause. Laughter, however, is encouraged. It gets me through the tough days, too. Here goes… I noticed a rash on both my legs. Yes, both. I had no idea what it was so I made an appointment with my PMC. He tested me for a variety of things but could not conclude what the problem was. The Lyme test he did was an ELISA that came back negative. I knew nothing about Lyme disease at that time and did not pursue the issue further because the rash went away. This was January 2004. I really do not recall what my health was like over the next four years but in August 2008, I knew something was wrong with me. My left hand went numb. It started with the ring and pinky fingers of my left hand. That sent me back to my Dr. He said that it sounded like a pinched ulnar nerve. He told me to wear a hand brace. I did as I was told but then the entire hand and forearm went numb. I also noticed that I was having night sweats and feeling a little dizzy and tired beyond belief. Sometimes I would see a flash of light like someone took my picture. I lived alone then so no pictures were being taken. I went back to the doctor. He said it sounded like bulging discs. Huh? I demanded an MRI. He relented but said he had to ‘treat’ me for 30 days before I could have the MRI. Something about insurance. OK… I had the MRI after 30 days and it was inconclusive. But my PCP obviously saw something because he ordered another MRI of the brain and cervical spine, w/wo contrast. That MRI showed lesions. I went to a Neurologist and I was diagnosed as a ‘possible MS’ case – a CIS (clinically isolated syndrome). This was November 2008. Well if I was diagnosed as a possible RRMS MS, what am I doing here you ask? You thought that at just the right time because I’m just getting to it! For the next four years, I dutifully took my Avonex once a week and waited for the other shoe to drop. Besides the numb left hand and forearm, and slight back pain, the fatigue was the biggest issue for me. I had a few tingles in my left toes and the back pain flared …um…once a month…but nothing else. I decided to try to get pregnant this year so I stopped taking the Avonex in May 2012. Also during the time on Avonex, I noticed that my back had broken out. It was annoying me so I went to my dermatologist in July and he prescribed me Dual ointment and Doxycycline pills. Pills for a break out?? No way I was taking them. The ointment worked but once I stopped, the backne was back. So, I broke down and started the Doxycycline pills in September to see how they would do. WELLL…. First off, they made me sick as a dog when first ingested. The nausea and dry heaving was a mess but a funny thing happened – no back pain, no numb toes and could the feeling be trying to come back in my left arm/hand? Why? Could I finally be ‘remitting’ after four years of ‘relapsing’? Was it the pills? I jumped online and researched, researched, researched. Something I refused to do with the MS diagnosis because what I read about that disease initially terrified me. All that research ultimately led me here. I strongly suspect that I don’t have MS but have Lyme Disease instead and have had it for almost 9 years. That suspicion was magnified when I stopped taking the Doxycycline after three weeks. I have a 90 day supply but I gained ten pounds in 3 weeks!!! NO WAY! Research also showed that Doxy causes weight gain. Um, no. But right before/after I stopped the pills, it’s like my symptoms played catch up for the first three weeks they went away. My back feels like it’s breaking in half. I can barely keep my eyes open. The numb toes returned with a vengeance! Now, my entire left foot and left leg are numb. The left arm/hand is so bad now, I can barely use it. The brain fog was always a mess, too, but now it’s really bad. I feel terrible. Herxing?? I don’t know what to do now. I need to see a LLMD but I want to order the Igenx testing first. I live in NJ but, since I work from home, I am in NC visiting my parents. I’m off the entire month of December and I need to get to a doctor asap. I have to know for sure if this is Lyme. I’m fading fast. Any suggestions/advice would be greatly, greatly appreciated. I saw a post where someone spoke about a LLMD in central NJ. I can also do NC. Please email me any names: [DELETED]. Please leave your suggestions and opinions here. Thanks for listening and sorry it took so long. I left out SO MUCH to shorten my story but I’ve been suffering for quite a while and I need help!

-Mak

Last edited by Mod-S4; 02-18-2013 at 09:14 PM. Reason: Do not post email addresses.

 
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Old 11-09-2012, 03:49 PM   #2
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Re: My Long, Weird, Confusing Story...Help, Please!

I went to a doctor today and convinced her to send my bloodwork for a Western Blot w/co-infections. Once I told her my story, she wanted to stick with the MS dx but could not explain why the doxy alleviated the alleged MS symptoms. They use LabCorp. I will keep my fingers crossed that I get a definite dx soon.

 
Old 11-09-2012, 07:57 PM   #3
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Re: My Long, Weird, Confusing Story...Help, Please!

mak

Sounds like lyme to me. Good luck and please let us know your results. LaLa

 
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Old 11-10-2012, 05:54 PM   #4
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Re: My Long, Weird, Confusing Story...Help, Please!

Hi,
I am new to this site but have just read this and am amazed at how close your story is to mine! I had surgery on my ulnar nerve as my fingers curled under so badly...i still cannot straighten them.I have had all your symtoms and a few more but the insomnia and fatique were by far the worst..lower back pain,brain fog and 'floaters' in my vision,tingling,tinnitus and weirdly not being able to spell! I had a positive elisa test and 1 band positive on the western blot...I am convinced I have had Lyme for several years and believe it may have caused many if not all of my health problems since.Miscarriage[x4!] trigemanal neuralgia,depression,periods stopping at age 44! I wonder did you ever get a diagnosis? How are you now? I am still waiting..in the uk we are sent to a neurologist for referal for a lumbar puncture/brain scan... for me thats next.Wishing you well. x

 
Old 11-10-2012, 09:22 PM   #5
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Re: My Long, Weird, Confusing Story...Help, Please!

Sounds like my lyme story...
Had very bad electrical shocks, numbness, tingling, eye issues... Went to dr and he thought I might have a sinus infection because of such bad eye, sinus, head pressure. He prescribed a zpack and clindomycin. These made me so sick - which we know now was a major herx from lyme - I was in the hospital twice for three days. They ran every blood test, scan, X-ray, spinal tap they could think of. I literally felt like I was going to die at any moment. All tests were negative. They thought I had atypical ms. Sent me home and told me to see rheuma and Neuro drs. Got worse - couldn't walk, think, etc. --long story short - someone knew someone w lyme. They thought it sounded like what was going on with me. I got to an llmd. Got bloodwork done thru igenex. I have lyme, Babesia, and bartonella. I've been in treatment for a year. I probably have had lyme for five years, but it didn't get bad til last October. If I were you I would find an llmd ASAP. Please see if you can get bloodwork ran thru igenex. Other tests are not reliable.

 
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Old 11-11-2012, 09:18 AM   #6
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Re: My Long, Weird, Confusing Story...Help, Please!

Moomoore, I hope you get your dx soon. I am awaiting the results of my Western Blot. I am concerned that they are doing the testing thru LabCorp when I hear so many people talking about Igenex. I just want some relief so badly, I'm pretty desperate. I spend hours and hours pouring thru articles on the internet. Recently I've read about Rife machines. I'm ready to go out and buy one! I can't hold onto anything with my left hand, it's so numb. I'd give almost anything to feel my hand, arm, leg and foot again.

Annalisa, your story sounds so similar to other stories I've read about. I'm glad that you got an accurate diagnosis. Are you feeling better after a year of treatment? I didn't go to a LLMD because I didn't know any in this area.

 
Old 11-12-2012, 08:54 PM   #7
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Re: My Long, Weird, Confusing Story...Help, Please!

Mak071, You need to go see an LLMD. My daughter had symptoms for 4 years and we bounced from doctor to doctor just like you. But my daughter's Lyme test wasn't CDC positive, so they wouldn't treat her. A LLMD is the only doctor who will treat for Lyme if the test comes back with Lyme markers but not a definitive CDC positive test. A large number of tests come out CDC negative even though the person has Lyme because Lyme disease is found in the tissues and is not always in the blood. The regular doctors will only give you one month of antibiotics, but most people who have had Lyme diseease as long as you, need antibiotics for more than one month to get rid of it. Start researching LLMDs in your area!!

 
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Old 11-13-2012, 01:24 PM   #8
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Re: My Long, Weird, Confusing Story...Help, Please!

annalisa9397, how are you doing after a year of treatment. My 24 year old son was diagnosed last October. He was taken off two of his abx and still on all his supplements. I was hoping he would be off everything by now, but. . . He is doing much better than a year ago but is wondering if he will ever feel totally "normal" again. In looking back, he thinks he has had it since he was 17,

 
Old 11-13-2012, 07:43 PM   #9
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Re: My Long, Weird, Confusing Story...Help, Please!

Hi - this is Annalisa - I have been on abx for one year and so many supplements (92 pills a day. I am so much better than I was when I collapsed last October. We don't know if my mom transmitted it to me - she's been sick her whole life and they could never figure out what was wrong until I got so sick. We both got diagnosed at same time. My symptoms were similar to hers but on a much more exacerbated level. We also hike in the redwoods in ca in nor cal. About 5 years ago I had a ringworm (my dr thought), but my llmd says it could have been a tick bite. Four years ago I had some weird symptoms (plueresy, costochondritis). Then two and a half yrs ago my hair started falling out and my heart started being weird. Last October I started having horrible electrical shocks, Bell's palsy, numbness, pressure. Then finally at the beginning of nov 2011 I woke up one morning and literally thought I had died. I could barely walk, feel my arms, or remember my kids names. I was so sick I wanted to die.
Make the rest of my story shorter. I was in the hospital twice and yet ran every test there was. Everything negative. Met someone who knew someone who had lyme. They referred me to llmd. Herxed so bad for three mos. was bedridden and my mother in law live with us.
I started coming back to life in apr 2012. It has been such a long road. I have good spells and bad spells. Some days I feel completely normal. Other days I feel like I'm at square one. I don't know if I will ever be normal again either. My llmd says I will. He also says I'm with him in treatment for three years. I take my abx and supps religiously.
My main symptoms still are: head and eye pressure, unclear thinking, and a dizziness that isn't really dizzy. Hard to explain.
I work again. I didn't work from October - August. Some days I'm wiped out, other days I make it just fine.
How long was your son on abx? What are his main issues?
This has been such a long journey, but I am healing. Just not sure if I will ever be 100%.
Annalisa

 
Old 11-14-2012, 03:52 AM   #10
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Re: My Long, Weird, Confusing Story...Help, Please!

Thanks for hour reply Annalisa. He has been on 4 abx for a year and tons of supplements. His abx have been switched around several times and now is he down to 2 abx and still the supplements. He has the same head issues as you. Said he wakes up feeling like he has a major hangover and he doesn't drink alcohol. He wants to get a portable sauna for detoxing but the one his llmd recommends is $4000. Can't afford that. Didn't know if the $400 ones were a waste of money or not.

 
Old 11-26-2012, 06:08 PM   #11
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Re: My Long, Weird, Confusing Story...Help, Please!

Quote:
Originally Posted by Mak071 View Post
Moomoore, I hope you get your dx soon. I am awaiting the results of my Western Blot. I am concerned that they are doing the testing thru LabCorp when I hear so many people talking about Igenex. I just want some relief so badly, I'm pretty desperate. I spend hours and hours pouring thru articles on the internet. Recently I've read about Rife machines. I'm ready to go out and buy one! I can't hold onto anything with my left hand, it's so numb. I'd give almost anything to feel my hand, arm, leg and foot again.

Annalisa, your story sounds so similar to other stories I've read about. I'm glad that you got an accurate diagnosis. Are you feeling better after a year of treatment? I didn't go to a LLMD because I didn't know any in this area.
in my opinion the big labs just arent accurate for lyme...in my case i was negative from the big labs then my naturopathic dr sent my blood to igenix lab and it was positive...all im saying is if you really want to know i would suggest specialty labs that are more set up for accurate lyme tests versus the big labs....

 
Old 11-27-2012, 12:07 PM   #12
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Re: My Long, Weird, Confusing Story...Help, Please!

I am still waiting for the Nurse Practioner to call me back with the results, if you can believe that! My appointment was on 11/9. Everytime I call, I leave a message for someone (anyone!) to call me back. I got the bill in the mail but no dx. I'm beginning to believe that I went to the wrong place. One girl that answered to the phone said that testing showed my Vitamin D levels were extremely low but she couldn't answer about the Western Blot. In looking at my bill, there is no test showing for Western Blot. It's just the Vitamin D test for $207 and the new patient fee. WTH??? I'm going back to NJ Saturday and will have to get this taken care of when I go back there. This has been a waste of my time. I'm really looking in to purchasing a Rife machine. I need to do more research...

 
Old 11-27-2012, 01:24 PM   #13
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Re: My Long, Weird, Confusing Story... Help, Please!

thats interesting, my vitamin d levels tested low as well...ps what is a rife machine?

 
Old 11-27-2012, 08:02 PM   #14
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Re: My Long, Weird, Confusing Story... Help, Please!

If you google 'Rife Machines' and/or Dr. Royal Rife, you should see many articles about the benefits that Rife machines have on healing the body. I'm not suggesting you or anybody else get one as an alternative to medication that's prescribed by your own physician (my disclaimer) but I am looking into purchasing one for myself. I'm almost convinced of its healing abilities but I do plan to do a little more research. Allegedly, Rife machines eliminate a lot of Lyme disease symptoms, as well as a ton of other diseases, too.

 
Old 11-28-2012, 06:17 PM   #15
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Re: My Long, Weird, Confusing Story... Help, Please!

just read some stuff online, not all flattering, pretty controversial...if have done these microcurrent treatments before, are the same or different?

 
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