Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi, I finally talked with a 'real' person at the office today and was able to get in for a consult in 5 days!!
I just want to see what he thinks whether I do have Lyme and to get that testing done. I'm so glad to have gotten in, as I know they have a tremendous patient load and I was worried I couldn't get in until next year or something!
I'm going to start writing down symptoms so I don't forget anything while I'm there.
Anything else I should know or be prepared for, those of you who go to Dr. H?
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I don't see that LLMD, but I wanted to say I'm happy for you that he's a great doctor. He covers all bases ... I have friends who see him.
Write down any questions you have, including ones you think you will remember, like, "Do I have Lyme?" as you will forget everything, LOL.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi! lol, you're right, I should also write down the obvious questions too, huh!
Have your friends had good results with him? I've read some success stories and I watched a radio interview with him online yesterday and he seemed very knowledgeable and open minded and compassionate (a difficult combo for most docs!).
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My friend is a very difficult case with a lot of side issues. She is making progress, but still has a long way to go. If he weren't so thorough and willing to get other doctors on the team when needed, I actually don't know if she'd even still be with us. Very complicated case.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by Ocean: I just want to see what he thinks whether I do have Lyme and to get that testing done. Thanks, Ocean [/QB]
I don't mean to sound insensitive, but I was just wondering how it is that you've been on this board for 5 yrs but you're not sure if you have Lyme?
( don't hit me, OK? )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi Lymetoo,
No offense, that is a completely rational question! Let's see in 2004 I having panic attacks that would not go away and foggy head ect, and I was reading somewhere that Lyme could cause 'neuro' effects, I started looking into it and saw that Lyme starts with a 2-3 week 'flu'. Now my family and I still today refer to my life as 'before I got sick' back in 1996. I've changed, never been the same, I can't excercise any more ect. After spending 10 days in Kiawah, SC I came back and the next day had an extremely sore throat, swollen glands, achiness, ect. I don't know if I had a rash. I do remember having some weird 'bug bites', but I figured it was just some weird southern bugs.
Well, we had no health insurance in 2004, hubby and I were both in college, although I did go to one doctor using some type of free insurance.
I had explained to him how my body got sick in 1996 and had never recovered. He was intrigued and tested me for mono, explaining if I'd ever had it, the virus would be in my system permanently. It was negative, he said I'd never had mono (which is what my doc told me I had in 1996). We moved out of state and I no longer had any type of insurance.
I was used to feeling crappy and figured that maybe it was just my personality now and since I'd had kids I 'should' be constantly exhausted. My dad told me that no one should ever be happy because we should always seek God for everthing (I know what he means, but he doesn't understand how I feel and have felt for the past 12 years).
Jan 2005, I went on a super healthy diet, with barley green 3 X' day, fresh carrot juice, salads, fresh fruit, mostly raw, some days 100% raw (basically the Hallelujah Diet). I also took things like grapefruit seed extract and did fasting, ect. I started to feel better after about 4-5 months.
Then we moved out to CA and I was able to function somewhat normally and have a job. I got pregnant with child #3 and we ended up moving back to OH. I got busy with buying our first house and having our new baby.
Probably about 3 months after her birth, I started noticing some fatigue and anxiety, but brushed it off. Then my husband and I saw an MD turned alternative who was highly recommended. He said I had Lyme disease. Then something traumatic happened the next week and I just tried to ride out the following months and brushed aside the Lyme.
I started getting a stiff swollen knee every once in awhile and usually within a day or 2 of it, I would wake up and my feet and sometimes legs would hurt, like the muscles had been overworked even though I hadn't done any exercise. Sometimes I could barley walk. Usually by the next day I would be fine again.
In 1996 when I got sick, I had been doing gymnastics, cross country, track, theatre, orchestra, student council, National Honor's Society, choir and I can't remember what else. I stopped caring about anything. I slept 16 hours/day, I started wetting the bed at night (after being potty trained since I was 2!). I had muscle twitching, eye floaters, anxiety/depression, weight gain (now I can't gain weight though), a rash on my abdomen that would come and go, I was constantly freezing, I always had a low grade fever (I remember trying to give blood when the red cross came to school because my friends wanted me to and they took my temp and said I had a fever and couldn't, but I always had a fever), very swollen glands in my neck, I felt like I couldn't breathe sometimes, I had ALOT of trouble swallowing in 2003-2005 and I went down to about 100 lbs and I'm about 5'5" (I just found out this can be a Lyme symptom, my doctor didn't know why I had such trouble swallowing), my periods were messed up, although one test came back slightly low thyroid but the doc said it wasn't low enough to 'really matter' and I was 19 years old!
I went from being an honor roll student who couldn't wait to go to college to living with my parents after high school and hardly having the energy to get out of bed. One doc said I had mono, another told me I had CFS and probably would for the rest of my life.
All my friends went away to college and I stayed home. My friends would call and I would ask my mom to tell them that I wasn't home I just didn't want to talk with anyone and I didn't know why.
My mom didn't understand and told me I was being mean, ect. She sent me to 4 different MD's that year and was getting worried.
I tried colostrum, colloidal silver, juicing, barley grass, raw foods, olive leaf, ect. I was able to get well enough to go to college, but I wasn't myself at all. I remember telling my roommate that I had to go to bed by ten every night, saying that I had been very sick for years and didn't want to be that sick again. She probably thought I was crazy. I was terrified of eating anything that would send me back to that horrible state of being.
Over the years, it's always been in the back of my mind, "what if I'd never gone to South Carolina that summer with my friend and gotten sick? What would I be like now?"
I don't know. I promised myself that if I ever got better that I was going to help others who were like me, if there were others like me. But I've never really gotten 'over' it.
And I can't wait to find out. I want to know the truth and if I don't have it, then that's great! Lyme is a hard thing to get rid of, I was depressed after the doc told me he thought I had Lyme. Everyone here is fantastic, but it's not a club anyone wishes to join.
Anyhow, so that's the short side of my story, I know we all have one.
Dr. H office just called and asked if I wanted to come tomorrow at 2:30, so hopefully I will be able to find out even sooner now!
posted
Thanks. Your story sounds a bit like mine.... even the part about barley grass.
I've had my share of that too... and spent years "eating healthy" because if I didnt' I'd go into a tailspin.
Hope you get some help!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Haha, yes, the barley grass is disgusting. I have to plug my nose and chug it and then eat a tablespoon of molasses, swishing it between my teeth and drink water. There is a real art to taking barley grass!
I go tomorrow, so I am nervous but looking forward to some answers. Eeeek!!
posted
Good luck Ocean on your appt. with Dr. H. I have been a pt. of his for a year. I really like him. He's great. However, he is SOOOOO busy and impossible to get a hold of. His office goes straight to vm and it can be very frustrating!
Once you can actually talk with him, he's great. I also don't know if I have Lyme, as my symptoms are very, very atypical for Lyme. We're just sort of testing and seeing. Let us know what happens!
Posts: 11 | From los angeles | Registered: Jul 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks for the link Betty!
Jeni, Glad that you like him, I've been hearing that a lot. So do you mean he gave you the IGENEX test and isn't sure if you have Lyme? I'm hoping that it's either positive or negative, I don't want to beat around the bush saying, "well, you might, or you might not." After 12 years, I just want a yes or a no.
I started thinking last night that I may get the PA that works there and while that's OK, I'd rather see Dr. H. Does he do all of the consults (I hope)?
I'll be leaving in less than 4 hours, while I wrote out all of my present and past symtptoms, per the link Betty sent, I'm going to type it out so he can have a copy if needed.
Thanks for all of the support, I'll let you know how it goes!
posted
Ocean, The PA does all Dr. H's phone appointments. I don't know how it is working today, but for the most part when you go in, you are able to make an appointment with Dr. H. If they are squeezing you in, you may need to see the PA. She's good. However, I know what you mean about wanting to see Dr. H. I heard he has like over 700 patients!!!
Posts: 11 | From los angeles | Registered: Jul 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
OK, good I should have Dr. H then, they called yesterday and had someone cancel for today, so I am taking their spot. My anxiety is so bad, I'm afraid I'm going to have a panic attack there, I just feel anxious constantly, like any moment I'm going to drop dead. But then in the evenings often I'll feel better and much more relaxed. What gives?
I figure if I feel really bad, he will let my husband come in with me.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Just to let you know! I went today, and he is super nice, very good listener, ect. He gave me a TON of labs, said there may be several things with me and promised to 'fix me'. Since it's Fri, I have to wait until Monday for the blood draw, but that's OK.
I was very nervous and actually paced a little during the appointment, but it was probably actually good as he could see how my anxiety can be at times. He gave me a natural supplement with Gaba and green tea extract to help.
So that's my story, the appointment was only about an hour, but that was fine with me, we discussed everything and I didn't feel rushed.
Anyhow, so thanks all for your suggestions and support, I appreciate it, I'll just have to wait now and see!
posted
Dr. H is the coolest... I think there's only been one time that I haven't cried during an appointment. He's an easy guy to talk to, glad you were able to get in with him!
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