After reading a lot of info on Lime disease I then called my Aunt where I spent every summer in Indiana for years growing up.
My cousin who grew up there was diagnosed with MS.
So I wondered if I maybe had a tick found on me or a fever any of those summers.
She told me there was one summer I complained of my legs aching and headaches but no fever.
She just told me it was growing pains.
I told her last night about the anecdotal evidence of MS being misdiagnosed and is often LD.
She told me that 3 other people in a 5 mile area are also diagnosed with MS over the last years that grew up with my cousin and went to school with each other.
Also a man sometime over the years was diagnosed with LD about 10 miles away from her house.
We are trying and sell our dream home for 2 reasons.
One is to have money for medical expenses.
Two is because we live out in the country and I can't drive into town without paying for it with days of pain.
Anyway I was just wondering if this sounds as classic to you as it does to me? After I read the information I have been advised to read all I can think of is this sounds classic.
One thing though that I can not find even googling is: When my Dr put the implant into my spinal cord he told us that my ligaments between my vertebrae are the strangest texture he has ever felt.
They are - in my words mushy. And he had no idea what it could be.
Also my spine is so narrow he could only fit one leed (small wire). Normally they use 2 just in case one fails. Yet my xrays and MRIs don't show stenosis. Can that be swelling?
My pain has been from my waist down for the last 4 years and I have been diagnosed with "Targeted Fibromyalgia (No Such Thing, Lazy Drs) to Depression to I don't have any idea to your just crazy".
Recently I have been getting shoulder pain and my hands feel swollen and sore at the joints after sleeping.
So now it is spreading even more. This will just make my Dr probably say - see I told you it was Fibro.
I hope it was ok to write this post this long. Sorry if too long.
Thanks, Conny Posts: 50 | From Charleston, SC | Registered: Jan 2009
| IP: Logged |
posted
I would try and find a lyme literate doctor in your area (LLMD). Go to the section here on seeking doctors and post where you live. :ex seeking LLMD in Charleston, SC.
If you cannot get in to one quickly, try to get a doctor to get you tested for lyme at Clongen labs (www.Clongen.com) or Igenex labs.
So sorry for you pain.
Blessings. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10177 | From Illinois | Registered: Aug 2004
| IP: Logged |
You absolutely sound like a classic case of undiagnosed long-term Lyme. You've had it long enough you surely have picked up other illnesses such as co-infections Bartonella and babesia as well as Wilson's Syndrome www.wilsonssyndrome.com.
Doctors (they talk to God or maybe God gets advice from them - one or the other) talking down to you, telling you to see a psychiatrist, putting you on Prozac and who knows what all that at best will do nothing and at worst put you in the ER. I made unconcious coma trips to the ER TWICE with meds given to me by doctors who KNEW what was wrong with me just by "looking at me". Grrr. You have been put thru Hell. Pardon my French. There was NO reason for it!!
But NO true Lyme research is going on. The $100 million given the CDC and FDA last year for that purpose after a powerful senator and President Bush both contracted Lyme the same month (May, 2007) has backfired!! Both agencies are using the money to hire tons of PR people and lawyers to hit all fifty states appearing before state medical boards to preach their mantra that "Lyme is VERY rare and EASILY cured with 30 days of doxycycline. If the patient continues to have symptoms it is because of their body remembers the Lyme and continues to send what are now false symptoms of illness". What garbage! Who came up with that? A group of insurance companies "advising" the CDC, FDA and AMA. Insurance companies WANT Lyme to be what they say because 30 days of doxycycline costs them about $20. If you've had Lyme for years CORRECT treatment can cost as much as $100,000 (or more). WHO sat on the board that came up with this "medical fact"? ONE infectious diseases doctor (good) but also an OB-GYN and several other doctors who specialties have NOTHING to do with the immune system!
With all this new $$ the CDC have the FBI attacking BOTH of my GREAT LLMD's. They are trying to stop their practices by demanding detailed records of EVERY patient seen in their 30+ year careers. Both have hired full-time CPA's just to meet the FBI's legal demands. Fortunately they have money. The CDC/FDA thru the FBI has put less wealthy doctors OUT of business. Dozens thus far plus have scared away countless new doctors into joining LLMD practices. One of my LLMD's is 80 years old. She has helped countless thousands but the FBI is on her 24/7. She has hired and lost three young doctors in the last 12 months. They see the FBI all over the place, look at their college loans, talk to their spouse and they are GONE! Intimidation! This is OUR government doing this to us. When the "water breaks" as it did with AIDS in about 1982 I hope "heads roll" in many orgs and gvt agencies. They will deserve anything thrown at them. BUT, just like with AIDS they will all CYA and act like "gee, I wish someone had told us that!". CRIMINAL! (think I said that already).
Lyme is THE fastest growing epidemic today. By far. But (maybe) one person in one hundred who has it has been correctly diagnosed as having Lyme. One in a thousand have had side illnesses correctly diagnosed. One in ten thousand (best guess on this one - the other numbers are taken from respected LLMD's (Lyme Literate MD) writings) gets all the correct treatment and emerges healthy again! After spending (about) $400,000 (mostly of my own money - I'm 61 and was lucky in business - Thank Heavens!) I crossed the finish line to declare I am 95% healthy again about a month ago. I feel great! Yes, still a few down times but mostly what is left are things not related to Lyme (i.e. a bad disc that is not fixable). These are TERRIBLE numbers! CRIMINAL! (personal opinion only) as there have been a few of the "black hats" who work hard at destroying good LLMD's and have "done in" dozens of such courageos doctors (Google Dr. Jones Lyme for a typical horror story).
But the tide is turning. Lyme "squiggles" (that's what they look like under POWERFUL microscopes) have FINALLY been found and other evidence PROVING the existence of Lyme is now there for all to see BUT the AMA and others remain in a state of denial. THE GOLDEN RULE. "He who has the gold, makes the rules. The AMA, CDC, FDA and insurance companies have billions of dollars. We just have each other (here on Lymenet) and about 50 LLMD's (for a country of 300 million people) brave enough to battle what seems like Armageddon. The tide WILL turn when the tipping point arrives. That is coming soon.
I had two people just on my block infected with Lyme this summer. One came to me immediately and I told her go park in your doctor's office until he gives you a prescription for 30 days of doxycycline. Catch it QUICK and doxycycline has a 95% probability rating (probably higher) of totally knocking out Lyme. A year later - it is WORTHLESS. The doctor refused. She called me. I told her to tell his nurse she was not leaving without the prescription. She almost buckled but I gave her ``courage'' on her cell phone. At 5:30 PM (30 minutes after they close, her trusted doctor of 20 years said he was going to call the police if she did not leave. She really began to sweat. I screamed at her until the doctor heard me on her phone. He gave her the 30 days of doxycycline saying ``NEVER COME BACK!'' She will not. Hippocratic oath in medical school: ``first do no harm''. With doctors like that it is ``do all the harm you can get away with by having a closed mind. She ``bloomed'' with EVERY Lyme symptom two days later. She could not walk. I told her to stick with the pills. At three weeks she was 90% healthy again. At six weeks she was A-OK. What about my other neighbor. The daughter of a neighbor actually away at college. Said nothing. Until one day she could not get out of bed. Her dreams of being a female athletic star or at least a P.E. teacher are gone. I have her seeing my #1 LLMD doctor now but she is out of school (full-ride scholarship to an expensive school). The younger you are and the healthier you are - Lyme seems to hit the hardest! Just anecdotal but time after time the worst cases are healthy teenagers to age 30. She lives in bed in terrible pain. She has to be carried to the bathroom. She will regain most of her health but it will take years.
I have been through it all. I have written posts with actual helpful treatments that are found nowhere else on the Internet. I have also debunked dozens of worthless gadgets and meds. For starters read my recent posts of the last few days on Lymenet. Then read: www.yantis.us/detox.htm and www.yantis.us/hulda.htm
I only get on Lymenet every few months as every time I do I make a post or two and immediately receive hundreds of messages (mostly e-mails - [email protected] for people who wish privacy) or do a post here if you think the info will help others.
I came back to Lymenet last week after discovering the Hulda cleanse and that my testosterone was WAY low (that would not help you of course but maybe other hormones are way off). The Hulda cleanse did me a world of good. It flushed 61 years of junk out of me. My liver began to detox again. After getting my metabolism out of low gear when my body temp reached 98.6 I detoxed a WHOLE bunch! You have to have good metabolism or meds just pass right on thru you. Lyme seems to NEVER be just Lyme (unless you were just bit last week then get doxycycline if you have to beg and cry). Getting well is like peeling back an onion. Each layer exposes something else.
Would you like me to send you some (long) e-mails I've sent others the last few days? They contain a lot more info.
No one deserves to be treated the way you have been treated and virtually everyone here on Lymenet has been treated that way especially in the early years when doctors had them convinced they really were crazy plus a hypochondriac.
Note: to the hundreds who have sent me messages, I'm answering as fast as I can. I type 120 wpm+ but even that is not doing it. I AM ABSOLUTELY going to do a Web site (I have many sites already on other subjects plus business sites) devoted to Lyme and all of my personal experiences. Caveat: I am NOT a doctor so all I can do is express my opinions and relate my personal experiences.
You will get well!! But not with the AWFUL (non)help you have been receiving. Hang in there. It will take time. Send me a message if you'd like these other e-mails sent to you. And watch for my upcoming Web site. I'll announce it on Lymenet. I'm trying but I just can't answer hundreds of messages a day with the depth of information that needs to be conveyed. This is SHORT in comparison to some of the e-mails I have written. The ``Lymenet family'' got me thru the worst months when I wasn't dead but wished I was. I am now doing all I can to at least repay a small part of the help others gave me.
Take care! Gary in Kansas
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
| IP: Logged |
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I would definitely seek a LLMD in your area.
I have dealt with some of the same issues as you have--though nowhere near as long-term.
I have been told I'm perfectly healthy and just stressed/anxious/crazy. They have put me on Zoloft, Xanax and Lexapro, and I have had vicious reactions to all.
(Funny thing, though, I was on Zoloft after my 4 year old was born, for post-partum depression, and had no problems with it, but a year after my 2 year old was born, I couldn't handle it)
I finally have an appointment in March with a LLMD, but I'm still struggling with shortness of breath, visual disturbances, cold all the time, achiness, weakness, numbness, joint pain, etc.
Yes, I'm sure you've got a case of undiagnosed Lyme, and armed with that and with the great info you'll find on this site, I'm sure you'll be able to find a doctor and be on the road to treatment.
Good luck! Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
| IP: Logged |
posted
Hi - this is a classic set of Lyme symptoms and their onset. And yes, the medical profession has put you through the wringer. You need to find a Lyme-treating doctor.
For me, my fibro pain went to zero in a week when I did 150mg clindamycin 3-4x/day. I say this as a patient, not a doctor. we're all different when it comes to responding to med. This one works for my fibro.
Just study as much as you can here about the disease, its symptoms, and treatments.
Note for w0tm: the Lyme bills did not pass last year so there is no extra 100 million dollars. But the LLMDs get attacked anyway.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic