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Lyme Disease Message Board


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Hi everyone,
Tee Dee, I am so happy things are going well for you right now. And Bothrops, I'm sorry to hear another week has gone by without any apparent improvement. It wasn't a great week for us, either. But, it is only week 2 on Rocephin so I am trying to tell myself Sara is probably right where she should be. She almost certainly had her first herx, early in the week. Her protocol is 4 days on Rocephin (2 gm), followed by 3 days off. She started feeling bad on her second day off and got worse until we started restarted her IVs Tuesday evening. We finished this week's infusions last night so I will watch closely to see if she gets worse again during her three days off and mention it to the doctor when we see him on Thurs.

Besides feeling flu-ish and "the worst she's ever felt," she complained about "palpitations" all over her body. I'm not quite sure I understand what she's feeling. She has a syndrome that causes tachycardia (rapid heart beat) so that is her reference point for palpitations. When I tried to describe what she was feeling as fluttering, she said it wasn't a fluttering feeling. She's also described it as a "pulsing" feeling. Sounds like it's probably a herx, doesn't it?

But she was feeling better by later in the week, though still lots of fatigue, dizziness, and her ever-present visual disturbances. She was just kind of back to her pre-treatment "normal" (as opposed to her pre-treatment "feeling really bad today," if that makes sense).

She also had her a bout of diarrhea so we upped the probiotics and the first signs of a yeast infection so the doctor added 100 mg/day of Diflucan, which has helped. Besides that, she's on Zithromax, Plaquenil, Actigal, probiotics, milk thistle, magnesium, B12, and salt capsules (for her POTS--Postural Orthostatic Tachycardia Syndrome). She is also trying to stop eating sugar.

Romans, how are you doing?
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
Hi ,
Shanna, it's so nice to hear that you're adjusting well to the new oral meds and that you're feeling better. I was devastated to read that insurance stopped coverage of your IVs. It is so encouraging that the IVs might have lowered your bacterial load to the point where you can tolerate your new meds. Tronni, how exciting to hear about your walk across the parking lot. I hope it is the first of many!

Sara is hanging in there. I think we're finishing week 11 of IVs, the last 3 have been on IV-Zith. She started Mepron on Sunday so complained a lot about fatigue, headache, and tinnitis early in the week. But yesterday she seemed to bounce back to her pre-Mepron state. Overall, she seems much better in terms of energy level, dizziness, heart palpitations, but so far the 11 weeks of Lyme treatment has done nothing to improve her visual and auditory disturbances or her neck and back pain. Today I received the Artemisinim I ordered. Not sure when we'll add that.

We are taking her to New Haven to see Dr. J in Dec. Also, she's going to have a SPECT scan at Columbia. And her local LLMD wants her to see an immunologist in NY because she tested deficient on 3 of 4 immune factors. This is something I don't know much about.

She's still managing to go to school most every day and for the past several weeks has been staying after school several hours for play practice. The production opens in a week.

My WB IgM came back from Igenex as indeterminate, but would be a positive based on Dr. B's guidelines. I have an appt in Nov. to see Sara's LLMD. Meanwhile I had a suspicious mammogram so for now I need to focus on that. Another mammogram on the 8th. Hopefully, it will be nothing.

Take care everyone,
Lesley





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