As a youngster and growing up, mostly in Michigan, I was always a fairly healthy person, with a few exceptions. I always had a predisposition to upper respiratory infections, a strong allergic reaction to mold spores, and a poor self-esteem that led to illegal stimulant use. Also, when I was 16 I fell off a two story house, doing a great deal of damage to my hips, knees, and ankles. At the time of the accident I weighed in at 195 lbs, being about 25 lbs. overweight. The damage from the accident was severe enough that I really couldn't walk and ended up gaining 120 lbs over the next 2 years. I also started using quite a few illicit and prescription drugs to help with the pain, as well as my self-esteem issues.

I graduated from high school in 1983 and gave a shot at pre-med courses at the University of Iowa...where my father was an Alumni. I wasn't emotionally ready and ended up leaving after my 2nd semester to go and explore the world. (Yeah...I went out and partied my butt off.)

In 1988 I checked myself into a drug rehab. clinic, weighing in well over 450 lbs. Things went well. I moved in with my cousin and his family. He was also recovering from drug abuse and helped my get my act together. I spent a little over a year and a half there and during that time I became active and motivated again. I lost quite a bit of weight, getting down to about 265 lbs, which was about 25 lbs. overweight for me at the time.

In the Fall of 1990, I returned to college and pulled two sememsters of 4.0 GPA, as well as being active on the football team, and several campus organizations, not to mention having a full-time relationship with a totally awesome lady.

Late in the 1st semester, I noticed a pain in my testicles which became very sharp and peircing when I sat down or touched them. The Dr. prescribed abx and did a full set of cultures to check for VD. All came back clear and the pain cleared up while taking the abx. Then, early in the 2nd sememster I became very ill. The symptoms were flu-like, but pretty much non-specific. I was dead tired, my glands were all swollen, every joint in my body was stiff, my gums were bleeding, etc. I was treated with abx and told to get plenty of rest, as well as to slow down because the Dr. felt that I was pushing myself too hard.

After the 3rd bought with this thing in 2 mos. the Dr. did an EB titre and a bunch of blood work. The results of the EB titre showed an extremely high antibody count, so he sent me to a specialist to be checked for Chronic Fatigue. The CFIDS specialist did an extraordinary amount of testing, with some very interesting results.

I was with this Dr. for over a year and finally left because nothing he did really seemed to help me feel better. During that period, I regularly developed the CFIDS symptoms described above along with RA like symptoms and some thyroid problems. The testing he did included 3-4 more EB titres, always showing hight EB antibodies, titres for Herpes showing strong antibodies for both types (Interesting because I've never had a cold sore in my life.), antibodies for Hashimoto's Thyroiditis, a thyroid ultrasound which showed 100s of nodules on my thyroid, a thyroid uptake test which showed issues there, and an MRI which showed non-distinct nodules on my pituatary gland and many smaller lesions or nodules all over my brain.

The really sad thing about all of this was that he never treated me for the Hashimoto's, other than to put me on a large dose acyclovir to see if it would reduce the sypmtoms. (For those of you who have done any reading, you probably know that the protocol for Hashimoto's includes Tx with a T4 product, like Synthyroid, to reduce the load on the thyroid gland.)

At least I knew at this time there was something wrong with my immune system, so I started seeking out help in that area. I went to several Drs. to see about receiving Tx for the Hashimoto's at a minimum. (This is where I started to develop a real dislike for Drs., which is funny because my father was a hospital director and most of my adult role models and friends were Drs. when I was growing up.) Without exception, all of the Drs. I consulted would not treat me for Hashimoto's because they considered it to be something that effected women only. (The published research at that time showed that the cases are split 90% women and 10% men.)

Needless to say, I eventually gave up and just started watching my diet, etc. and hoped for the best. I did have a problem with regular sinus infections, so I was getting abx tx for them every couple of months. Interesting to note that most of the abx I was prescibed for them is also considered effective against LD.

1996 and out of the blue I wake up one day, feeling like I've got knife stuck in me. Less than a week later I'm missing my gall bladder and the surgeon who took it out says he didn't find any stones, though there were a couple of small ones showing on the ultrasound. He did note that it was inflamed and appeared to be either infected or under attack by my immune system for some reason. He said this was common, but felt that mine was different and wondered if I had seen anyone about the possibility of an immune system problem. Hmmm...if he only knew.

Well, in 1998 I discoved that one of my testicles was quite soft and very small and the other was just quite small...very suddenly! I was off to the Dr. ASAP! The Dr. took a quick look, said the testicles had atrophied and that there was nothing that could be done and that she had no idea as to why. (It's really disturbing to think that this was an endocrinologist that teaches at Michigan State Universty saying this!) Uggghhhh....I hate Drs.!!!

About a year after this, I was in to see my new PCP...the one I grew up with had finally gone into retirement...and he asked me about my fatigue. I explained most of my history to him and he said that he had noticed that my Blood Glucose levels had continually come back elevated for the past 10 years on all of the blood work done at that office. The levels weren't extreme, had averaged about 170-180, and he felt that I had TypeII diabetes and couldn't figure out why it had never been treated. So...I now also have TypeII diabetes and take medication for that. While we were going over this, I brought up the testicular and thyroid issues with him and he blew them off as not being an issue, but did agree to have the lab check my thyroid levels, not the testosterone though. Well, I know the girls in the office quite well, so I had the one who did my labs add a Free & total Testosterone to the list, just for kicks.

The labs showed low thyroid, low-normal TSH, and Free testosterone of 154 with the norm being 240-1000. The Dr. said he wouldn't prescribe T4 because TSH levels were normal. He didn't care if I'd been diagnosed with Hashimoto's or not. He also said the 154 Testosterone level was normal and that was the end of that discussion. What I did get was a prescription for Glucovance to treat my mild case of TypeII diabetes.

Now, at this point I'm thinking I should probably get a new Dr., but that's a mute point. I'm moving to Cali to be with my fiancee, so I'm going to have to get a new Dr. anyway. (remember...during all of this stuff, no one has even considered LD but almost all of the Drs. have said they think I have some sort of autoimmune disorder going on. It's also important to note that my weight has slowly gone from 240 lbs. and 16% body fat to 380lbs. during this period.)

Okay, I'm in California now. Just before I left Michigan, I had a very nasty fight with some kind of bug that almost killed me. The Dr. put me on abx...Eryth. and it didn't do a darn thing. I did the Tx for 5 days and got much worse, not better. I'm out cold in bed, my sister is caring for me and can't get me in to see the Dr. for several days. She wants me to go to the hospital, but decides to give me some Flagyl and Doxy as it's the middle of the night, we live in a small town, and there won't be a Dr. at the hospital until morning. I left for the long drive for Cali three days later, with the Doxy and Flagyl accompanying me. Can't believe how quickly I recovered with the Tx switch.

I'm in Cali now and spend a couple of months seeking out a new Dr.

The new Dr. takes one look at my med notes from back in MI, does the blood work and gets me on both thyroid and testosterone replacement. This leads to making the diabetes worse and increasing my cholesterol. Now I'm also on the max dose of diabetes meds, without insulin, high doses of lipitor, testosterone, and synthyroid. Something else wierd is also happening. I get the testosterone (gel) and my testosterone levels go up for a bit and then they drop to levels even lowere than they were before I started. Four months after I start, I'm on two 10mg doses of the Androgel and my testosterone level has gone up to about 400 and then back down to 68. Needles to say the Dr. is confused. Also, my need for Thyroid is constantly increasing in the same manner. Further testing shows my pituatary is not making many of the hormones it is responsible for. My LH and FSH levels are totally non-existant, which would explain the testicular atrophy and problems with testosterone. My HgH levels are low. My TSH levels are always low, etc. The Dr. puts me on HCG to stimulate the testicles and that seems to work, to some degree, but they also tend to fluctuate in their ability to produce and my levels keep going up and then down, without ever really reaching a normal level. After two years of this, the fiancee and I break up and I move to Kansas City, MO., where my sisters and best friend are now living.

I get to KC and immediate go to visit my sister's PCP and a well respected endocrinologist. The endo ups my HCG and orders an MRI, to check the status of the non-specific stuff found in the MRI from 12 years before. The PCP has tripled my Synthyroid over the past 6 mos. and it may go up yet again, when yesterday's blood results come back in.

The MRI shows a pituatary adenoma and some more non-specific spots on the rest of my brain.

I've been sick as a dog since June, with my normal muscle weakness, RA symptoms, emotional problems, irritability, can't focus or remember and have been put out of work on disablity since Aug. 12th. My sleep pattern is non-existant and I go in waves of sleeping too much to not being able to sleep at all. My whole body is stiff and almost every muscle is sore, especially my lower back, legs, hips and knees. I have a nasty pain in my right butt that feels like sciatica that makes it very difficult to sit down.

What brought this on??? After going through my complete medical history with my Dr., he felt is imparative that I started working out again, even after I informed him that doing so invariably made me ill. This is not the first time I've had this set of symptoms and working out, especially any kind of anaerobic excerice (weightlifting) has always ended up incapacitating me 1-2 weeks after I start a regimen.

Now, I've probably forgotten to add a few things, but does anyone think these sound like the symptoms associated with Late Stage LD? To be honest, up until last week it had never occured to me. I'd never heard of Late Stage LD. What really gets me is that none of the Drs. I've seen has mentioned it. That bugs me...especially when you hear the next part. It's a part of my medical history that I carefully left out that I've given to every Dr. I've ever seen.

My mother's family is from CT and I've spent several years of my life living there. Not only was I living in CT, but I was work outdoors there daily, in one of the environments where LD is most endemic. To top it off...I know I was infected. Got the EM 15 years ago. Did I get it treated? You bet. Did 10 days of Amox. 500 mg. T.I.D.

Fortunately for me, I knew about Lyme just because I lived there and I knew what the accepted Tx for it was at the time. I developed the rash on a Friday and couldn't get an appt. with a Dr. until the following week. Since I was headed to Michigan the following day, I just decided to make the trip and hit up a Dr. when I got there.

Sunday, I went to the ER with the rash fully developed and showed it to the Dr. in the ER. I also had the flu-like symptoms, sweats/chills, stiff joints, etc. He laughed when I told him it was Lyme. He told me that Lyme didn't really exist and offered to write an Rx for some hydrocortisone cream for the rash. I told him I knew better, that I'd just come from CT, and that he'd be much better off in a legal liability sense if he just wrote the appropriate Rx. I mean, what can go wrong if I take a Rx of abx and I don't have LD?

I was feeling much better within a couple of days and have never thought anything more about the Lyme...at least in the sense of it being a continuing infection. At the time, it was my understanding that doing the prophylactic Tx was all that was needed and it would never be a problem again. Hence, until I stumbled upon some info. last week that led me here and other sites, I didn't give it a second thought.

What really bothers me is that I should have known or been told. I'm also willing to bet that there are others out there like me.

Anyway, I'm looking for an LLMD in the Kansas City area. If anyone knows of one, I would appreciate it if you would contact me. You can use the e-mail link above or message me at mrsnuggles728 on either AIM or Yahoo!. I prefer the latter.

Thanks for the support!

Yeah, there's no doubt about whether I was infected. I had the bite/rash 15 years ago. My point is that I did the treatment at the time and it never occurred to me that it was in any way related to all of the other illness I've experienced since then.

Great point about reading. I've been doing that constantly since I stumbled across this info. You know the really sucky part, for me, about having lyme? Not knowing I had it. Can you imagine what your symptoms would be like if you didn't know what was wrong, so you didn't get it treated?

Yeah. I will strongly encourage everyone I can to read all that's available. My Dr. doesn't want to touch it with a 10' pole. He's trying to get me referred to an Infectious Disease specialist. Can't wait to see how that goes.

LD can screw up every organ in your body if given the chance. It's a horrible disease.

I really wanted you to know that your story (from reading at least the first sentence of every paragraph) is VERY TYPICAL of the majority of posters who come here that have had something wrong with them for several years. I am not talking about someone with a recent bite and infection.

I say this so you will now know that you are not alone. You story is mirrored here over and over each and every day that someone new comes here after searching for just what is wrong with them and having all these weird symptoms for sometimes years and years.

If you would like, check out this link that is over in General Forum...it's the Alligator Pit where we symbolically send all those stupid docs, er, ducks, that were so off the mark in their diagnosis (dx) and/or treatment (tx).

As you read through the Alligator Pit, you will see that those that posted there (and those are only a smidgin of the actual folks who post and read here) have gone basically through just what you've been through.
Alligator Pit:

http://flash.lymenet.org/ubb/Forum3/HTML/003909.html

I would like, too, for you to be sure and read through this next link and actually bookmark it as you will want to refer to it time and time again...it basically covers all the basic questions that you have right now.
Tincup's links for new LymeNet members

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Welcome to LymeNet and the very best advice that I can give you is to be sure and get to a Lyme Literate Medical Doctor (an LLMD).

An LLMD will be probably a doctor that only treats Lyme Disease (LD), and not just any ole doctor who says that they treat LD. My PCP treats LD, but, I see an LLMD for my Lyme treatment. My PCP is not Lyme literate which is needed especially if one has gone into the chronic stage.

Any LLMD that you choose, should be a member of www.ILADS.org and have happy customers that s/he has treated. YOu can post over in Seeking a Doctor, if you have not already.

Again, welcome to LymeNet and come here often for support.

Well you're in luck, for one of the best and most respected LLMD is right there in Missouri.
www.drcharlescrist.com

He is great and many poster's here see him and more former poster's here that do not post here anymore cause they are better and out living life.

Dr. C o MO is a member of ILADS. He treats each patient as an individual and is an out-of-the-box thinker.

The majority of his patients come from all over the US to see him. You just cannot go wrong making that call to his office for an appointment. It's in the link I provided for you.

Let us know what you decide to do, ok?

Later,

Rosemary

edited to erase something that did not make sense.

Since you had the EM rash and typical symptoms, that would mean a "clinical diagnosis" of Lyme.

Excellent info can be found at the ILADS website.

Print & read "ILADS Lyme Disease Treatment Guidelines Summary" (4 or 5 pages) www.ilads.org/guidelines_htm

Note #10 begins: "There has never in the history of this illness been one study that proves even in the simplist way that 30 days of antibiotic treatment cures Lyme disease..."

Print & read "Diagnostic Hints & Treatment Guidelines..." - 32 pages of excellent info by one of the best LLMDs. www.ilads.org/burrascano_1102.htm

Midway through, find "Antibiotic Choices" & "Treatment Categories."
According to Dr B's recommendations, your antibiotic dose was very small & the length of treatment should have continued until you had NO symptoms for a month.
(Some are now saying treat until NO symptoms for 6 to 8 weeks.)

There is an excellent LLMD in Springfield, MO. Read "What do you like about Dr C?" http://flash.lymenet.org/ubb/Forum3/HTML/004140.html

quote:

---

Originally posted by ShadowHawk:
Yeah. I will strongly encourage everyone I can to read all that's available. My Dr. doesn't want to touch it with a 10' pole. He's trying to get me referred to an Infectious Disease specialist. Can't wait to see how that goes.

---

Well if you would just scan through the Alligator Pit that I gave you the link to, then you will see that we already know how that will go. Don't waste you time and don't get it into your medical record that you do NOT have LD, for that is what will happen if you see an ID specialist. Look at all the ID ducks in the Alligator Pit and then you'll understand.

Here's another great link for you to start on you journey of learning about this very complicated bacteria...you'll begin to understand just what we are talking about by not seeing the RIGHT doctor, a real LLMD.

Camp A and Camp B:

http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Later,

Yours is a very moving story, I"m impressed with your ability to function through what was obviously a very long, painfull and protracted illness.

We all know how painful Lymes can be (and it sounds like you've got classic symptoms), and what it takes to live through that pain.

Just think of how successful you're going to be when you start actually feeling better, you'll be unstopable.

I"m sorry you've lost so much of your life dealing with this, I hope that you can concentrate on feeling better and not be bitter about what you've lost.

I hate to say it, but the worst may be yet to come...have you heard of herxing? I suspect you'll get to know it well=). But ultimately, it's good for you, it means you're getting better.

Someday, my friend, you'll look back on all this, shake your head and be impressed with the strength you showed in the face of such hardships.

All my best,

How come the Drs. that work with this don't work with insurance companies? As if I can't figure it out, but I want to hear someone say it.

I called Dr. C's office and made an appointment, but I don't know if I'm going to be able to come up with all that cash up front. Grrr....

How come the Drs. that work with this don't work with insurance companies? As if I can't figure it out, but I want to hear someone say it.

I called Dr. C's office and made an appointment, but I don't know if I'm going to be able to come up with all that cash up front. Grrr....

How come the Drs. that work with this don't work with insurance companies? As if I can't figure it out, but I want to hear someone say it.

I called Dr. C's office and made an appointment, but I don't know if I'm going to be able to come up with all that cash up front. Grrr....

How come the Drs. that work with this don't work with insurance companies? As if I can't figure it out, but I want to hear someone say it.

I called Dr. C's office and made an appointment, but I don't know if I'm going to be able to come up with all that cash up front. Grrr....

How come the Drs. that work with this don't work with insurance companies? As if I can't figure it out, but I want to hear someone say it.

I called Dr. C's office and made an appointment, but I don't know if I'm going to be able to come up with all that cash up front. Grrr....

How come the Drs. that work with this don't work with insurance companies? As if I can't figure it out, but I want to hear someone say it.

I called Dr. C's office and made an appointment, but I don't know if I'm going to be able to come up with all that cash up front. Grrr....

You got it.

Please..if you do anything do this;

...pick up the phone, and call

417-886-8995

Set up an appointment.

This Dr also works with an Expert Endo in KC that knows Lyme also.

Trout

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc. www.ildf.info

this puts things in perscpective..

At least you have a signifigant other that loves you. but...

Ive said it b4. My childhood girlfriend died of lukemia when she was 10 and another freind(accuantence) recentlly died of a rare form of lukemia.

He was 24 and was healthy b4 this..

whoaaaa,, im having sweating and a racing heartbeat now,,, no lie..

quote:

---

Originally posted by ShadowHawk:
Okay, next question:
How come the Drs. that work with this don't work with insurance companies? As if I can't figure it out, but I want to hear someone say it.

---

Hi Hawk,

Actually, my Lyme Dr. is covered by my insurance - it probably varies according to your specific coverage?

Hope you find some answers very soon!

the girl at Dr. C's office told me that they just won't process insurance claims and that I needed to pay up front. My insurance should cover the visit. The problem is the initial outlay of cash. At best, I'm only going to be able to come up with enough for the initial visit...not enough to cover the blood work and 24hr urine test.

I've also set up an appt. with an Endo here in KC, a Dr. J.S. Same deal there. Must pay for the visit up front and then can submit my claim to my insurance, but the Dr's. office won't do it.

I have excellent insurance coverage, so I'm not worried about whether or not I will be reimbursed, but I really don't have the cash on hand to pay for all of this up front. My guess the reason the Drs. don't do the billing themselves, as most Drs. do, is because I'm sure they get quite a bit of flack from the insurance companies.

Also, my apologies for all of those duplicate posts. Had some computer/internet issues that made me think the posts weren't going through.

Trout...Thanks for that info. I will call in the morning. I also woke up to find 6 messages on my machine from folks at different LDA groups with names of Drs. in the area that are familiar with the disease. I will be checking on them also.

As far as being ill goes, I'd have to say that I've been very fortuante so far. From what I'm reading, it doesn't seem like many of my fatigue/pain symptoms are quite as severe as they are for most of the other folks I've read about. I don't know if that's because I have such a high tolerance for pain or if something else is in play here. All I do know is that it's been a good 10 years since I've been totally incapacitated like I am now.

And, thank you for pointing out all these links. While I had already read most of them, the ones that I hadn't were just as invaluable as any. Better safe than sorry, so if there are any more you want to point me at, it would be much appreciated.

Thank you all for all that you've had to offer!!!

And, as a patient, I wouldn't want my treatment dictated by the insurance companies either, or, why have an LLMD? Right?