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Thanks, TeeDee. So glad to hear the Herx was relatively brief. How long did it last? I know you expressed some reluctance about using the word Herx. Are you back to where you were before it happened?

Romans, I too am sorry about the news about your insurance coverage. Did it come from someone with your insurance company or from the home health agency? Like you, Sara's current prescription is for 6 weeks of IV Rocephin, although the doctor said we would reevaluate the continued need for IV meds at that point. The person at the home health agency who deals with insurance was able to tell me that our insurance plan has been very good about covering long-term abx. I wonder if someone at your home health agency could give you more information about how your insurance plan customarily handles long-term treatment if the doctor requests it. I hope the news is good.

Lesley
Hi Romans,
I'm sorry to hear about the heart pain and palpitations. I agree with the others who recommended getting seen today, as unpleasant as that may be. I hope you were able to reach someone in Dr. Crist's office.

You asked about Sara's heart issues. She was diagnosed in Jan with POTS, Postural Orthostatic Tachycardia Syndrome. You may be familiar with it. It falls under the general category of dysautonomias and more specifically, orthostatic intolerance. Although it is often diagnosed through a tilt table test, in her case they did the "poor man's tilt test" where she stood quietly for 10 minutes while they continuously monitored her blood pressure. Her blood pressure dropped a bit (at that time it was running about 80/50 normally) and her heart rate increased from 70 to 129 in the 10 minutes of standing still. She feels the tachycardia and finds it unpleasant, sometimes describing it as a fluttering or a feeling like her heart flipped over. But she seems able to control it by sitting or laying down and it has become less of a problem over the past six months, perhaps because her blood pressure has risen somewhat. She takes salt capsules to increase her blood volume and raise her blood pressure. She's also put on about 10 pounds, which probably helped raise her bp a bit. There was a time her doctor was talking about giving her medication to raise her bp and another medication to control the tachycardia, which sounded like such a drag for a 13/14 year old girl. It wasn't too long after that the Lyme diagnosis came back, so her doctor is hoping abx treatment will eventually resolve her POTS issues.

She starts her 4th week of treatment tomorrow. No dramatic improvements, other than she is no longer having chills all the time. This is a big quality of life improvement for my husband and I, who had a hard time driving around in 85 degree weather with the heater on! A few hours ago she complained about feeling really bad -- headache, sore throat, sinus pain, and hip pain. I thought, "Here it comes, the four week herx... just in time for the beginning of high school." Then, lo and behold, her latest "crush" called to see if she could go bowling and she was up here telling me about her miraculous recovery, no doubt due to the ibuprofen I gave her. It wasn't easy, but I said no to bowling, especially given her hip pain and the fact that her PICC line is in her right arm. Now, she's talking about a movie and I'll probably give in. I know she truly feels bad, but as you know, being with a special someone can lift your spirits and make you feel better.

Her check up was basically fine. Doctor says he expects she will need a minimum of 6-12 weeks of IV Rocephin so it is good he's thinking beyond 6 weeks. He is not an LLMD, but at our request he has consulted with Dr. Jones and another LLMD in our area (who we will be seeing in mid-Sept). We also have an appointment to see Dr. Jones in Dec. Her doctor is an internist who has focused on CFS and FM and after his experience with Sara is clearly interested in seeing whether Lyme may be an issue for other of his patients. When the diagnosis was made, he was willing to start her on IV treatment right away and it seemed like the best way to go. There are not many LLMD's in our area who see children and the waiting lists are long. But there are things he doesn't know, like how to interpret some HLA genetic factor tests Dr. Jones wanted him to have run. She had several positive findings, but he didn't know how to interpret them. I asked him to consult with Dr. Jones about it. I guess it has to do with a predisposition to developing autoimmune disease as a result of Lyme. If there's anyone that knows more about this, I'm very interested. I think the factors they were testing for are HLA-DR2 and DR4, except those weren't the numbers listed as positive on the lab report. Also found out that he had ordered the wrong coinfections panel from Igenex. The one he ordered only tested for Erlichiosa, so we still need to test for Babs and Bartonella. Since her appt was Thur, it was too late in the week to do an Igenex test.

And you asked about me. Yes, I had my blood drawn for an Igenex WB two weeks ago tomorrow. I asked my family practice doctor to order it based on the fact that I was bitten the same time as Sara and had been complaining to her about problems with short term memory and cognitive decline. I suspect I'll hear from her this week. (Gulp!) I don't know what I hope the result will be. My father died of Alzheimer's last spring and until Sara was diagnosed with Lyme, I feared I was seeing the early signs of Alzheimers. I also know a negative test doesn't necessarily mean I don't have Lyme. It's hard to think about potentially shifting my focus from her treatment to my own; at the same time, I don't want to regret not acting a couple more years down the road. I'll keep you posted.

I truly hope this post finds you feeling better and I will certainly be thinking of you on Wednesday when you go to MO. You are very sweet to worry about the rest of us with so much going on in your life. Take care,
Lesley
Tronni, :wave:
I hate the rough road you are on right now. I thinks for most of us this last week has
been pretty tough. But when the going gets tough, the tough get going. I don't feel very tough and I'm sure you don't either. But we are tough, look at all we have been through.

I think I went in to this expecting a quick recovery. We didn't get to this point in a month or year. For most of us it has been many years. My doc says 4 - 6 months IV and then oral for up to 1 1/2 yrs. I keep telling myself that I will get over this. I told my family I plan on next year having Thanksgiving at my house and cooking. Think positive, you will too......

The last report from Romans, Shanna was showing some improvement. I think you have been in treatment about 4 months. Right?? Youre days will start improving again soon.

A note of encouragement was recently when I was in the office and questioned if anyone every really got over this. She told me she had just released the person ahead of me who had been in treatment a long long time. She may in the future she may have to be retreated. BUT SHE WAS RELEASED. THERE IS HOPE.

Hang in there, we will get through this. You are NOT alone. Post, let us all encourage you the way you have us.

I am suppose to start Clinda and Mepron Monday, I know you've been on Mepron. How did it go? Are you still on Rocephin? I am having to pulse meds 3 days a week. My liver doesn't handle this well.

I know my thoughts have rambled but they are slowing getting better. I thinks.

Prayers.......Marsha





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