I've been reading everyone's posts here for a couple weeks now and I'd like to thank everyone who takes the time to post their experiences. It really is helpful. I originally joined Health Boards in June while researching a possible solution to my husband's long-term health problems. For the full story click on my name and go to my other entries. We continued to look into cervical fusion, and have a second doctor who says it could help, BUT since our daughter came down sick, we are investigating Lyme Disease. My husband, Steve, has been sick since before we were married. Does anyone think it could have come from a tick bite way back in like 1972? Here's a brief history.
1972 went camping in Michigan's UP. Slept on the ground under the stars.
Later that same summer had what was diagnosed as ringworm on his shoulder. Doctor was a little uncertain about it and said it didn't look exactly like ringworm or respond to medication, but it went away. Later, that same summer he remembers having a really bad case of flu. (Do you think it COULD have been a tick bite????)
Fall. He went back to boarding school and noticed that he couldn't sleep well. Noises in the dorm kept him awake even though the previous year he had never had any problem sleeping.
During the next 4 years of college, he continued to be very tired and had difficulty getting enough sleep. He began having a lot of back pain and couldn't do any sports or even run any more. Also had lots of sickness (strep and staff) which was treated with antibiotics.
1978 and '80's - laminectomy on lower back with other disk degeneration showing. Lots of back pain and fatigue. Brain and body would just be completely exhausted by end of work.
1990's - swollen joints and pain were diagnosed as rheumatoid arthritis. Began having ringing in ears, dizziness, had a big candida overgrowth. We worked for a long time to get that under control. Doctors gave him steroids, anti-inflamatories, anti-depressants, etc. All medications seemed to make him feel worse, so he would wean himself off them.
2000's - Became very sensitive to chemicals. Heart irregularities showed up. Ended up with a pacemaker. Swollen joints again with patches of psoriasis gave him the diagnosis of psoriatic arthritis. His hands and feet are always numb. He has hearing loss. Really dizzy and nauseated most of the time. He used to keep himself in shape by a lot of exercise, but can't do anything anymore. Can only walk a few hundred feet. When I go through the lyme symptoms list, he has so many of them. He was diagnosed with fibromyalgia and Chronic fatigue and is now on disability.
I think it could be lyme disease, but it seems that everyone's symptoms come on much more quickly. This is a very long time period from when he was 17 to now age 51. I know he really pushed himself through a lot of pain most of his life. He made a lot of dietary changes and has taken a lot natural things to try to help his body's immune system. All other tests have come back negative for any problems. He's been tested for lyme, but now we know that the tests aren't reliable, especially after such a long period. One thing we have always wondered about is that he seemed to get better when he spent a year in Brazil. He was taking an anti-malarial medication which he recognized as something that was used to treat lyme, but I don't remember what it was. After he came back from Brazil, he got sick again within about 6 months.
I'm filling out papers for getting an appointment with the LLMD in Grand Rapids. So we'll let him go from there. I just wonder if it is lyme is there any hope of seeing improvements after all this time? He's really a big mess.
I mentioned my daughter because after beginning to have seizures this summer and being diagnosed with epilepsy and diabetes, a lyme test was run and the first one came back equivocal and the 2nd one negative. I asked for the complete WB , but when I asked about it at the next appt., no other tests had been done. She had previously begun to complain about sore joints and numbness in extremities, but I had no clue where to take her for it because we've gone though all of that with a gazillion doctors with my husband. We live in the country in the South western corner of MI with deer meandering through our property all the time. We have always dealt with ticks in a non-chalant manor because "we don't have lyme disease in Michigan". And "the tick that carries lyme disease is a very small one that you can hardly see. It's not in the big kind that we have." We just pluck them off and throw them in the toilet. So if she does have lyme, it could go back a few years. She's now 22. I'm taking her to the LLMD in Grand Rapids, too. I see people on this site who have been on pic-lines for two years and see some improvement. It doesn't seem very promising. Are there any really happy endings out there?
Hello, The LLMD (Dr. in Grand Rapids) is my Dr. and I just want to let you know that you will be in good hands. He diagnosed my Lyme 6 months after I was bitten by sending my blood work to Igenex. That was after 2 negative Western Blot tests at the local hospital.
Overall I am doing well - however I only had it 6 months before diagnosis. I should note that mine was accelerated by 6 weeks of steroid use (for a tonsillectomy I didn't need) and steriods make the Lyme bacteria flourish.
I think there is hope - even for those who have had Lyme for a long time. If anyone can help you it is the Dr. in Grand Rapids. He is extremely knowledgeable about Lyme and leaves "no stone unturned" in trying to get to the bottom of what is going on.
Good luck - I wish you and your family the very best.
Hi Sue. Yes, I think your husband can have Lyme. Lyme affects people differently. Sometimes people can keep the symptoms at bay until their immune system becomes stressed in some way (illness, accident, divorce, etc.). Then symptoms emerge.
Many people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.
Since one of the ticks that carries Lyme is so small you can hardly see it, many people are bitten without realizing it.
Sometimes the Lyme disease rash is misdiagnosed as ringworm. Does your husband remember if his rash was itchy? From what I understand, ringworm is itchy.
It is good your husband and daughter will be evaluated by a Lyme doctor. This is very important. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. When are they going?
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.
Thanks Ticker and MichiganLymie, Like I said, I've been reading here for a couple weeks and have already benefitted from all of your knowledge and experience. That's how I found the dr. in GR and I've also gotten the article by Dr. Joseph Burrascano and a lot of other lyme info, but I haven't gotten the book you mentioned yet. I will do that today. I just got a bunch of paperwork from the dr. office which I am sending in today. When they get it, they will give us an appointment. Steve says that the "ringworm" had no feeling or itchiness. I really think that it was a tick bite. He's always known that something changed between his junior and senior years of high school. And it's been a slow but steady downward spiral ever since. I'll let you know what we find out when we finally see the doctor.
I just ordered the book, so I should have it in a few days. Are there any other books you think are good ones? I'm sad for all that we've lost to this disease, but also hopeful that we can save our daughter from a similar fate.
Got the book today, but haven't had a chance to look at it. There is so much info on this board, but it's really taking me a lot of time to extract it from all the postings and try to follow one person's progress through the years. I'm actually making a spreadsheet to try to sort it all out! I finally got appts for Beth and Steve with the LLMD in Grand Rapids. Can't get in until Nov 15! And they won't even order the Igenex tests until the Dr. sees them. I'm going to try some of the natural stuff I'm finding here until then. For the first time in a long time I'm beginning to think there is some hope, but I'm so frustrated that it is taking so long to even get started. Beth gets married next May and Steve sure would like to walk her down the aisle without collapsing! At least Beth is feeling well now, I just want to be sure she isn't infected and ends up going through what her dad has. She says she'd rather die.
Does anyone have any suggestions of the best thing to do while we wait?
I doubt anyone will find this post here, but it really doesn't matter. I just need to vent. I'm so angry and sad and mad and upset right now. I just got a call from the doctor's office and they have to reschedule the appointment. They wouldn't even make an appointment until I sent in the paper work, I mailed it in, so I let it go a week or so before I called them. I made the appt which was going to be November 15. I've been counting the days and just hoping that Steve would be able to start some kind of treatment. Now the earliest he can get in is December 3! And to top it off, they can't find the paperwork! Now I have to send that in again, too. They had an intern there who apparently misfiled it or something.