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Hello everyone. I am back again on the site. Felt lonely not being able to communicate. you guys have been a life saver for me. Kelly, how are you doing with your treatment? I have you in my prayers. Today will have my fourth. dose of rocephin. Feel somewhat better as far as frequency and intensity of symptoms but have new ones like bad knee pains and back muscles spasms and twitching like never before. Also back of the head muscle spasm and yesterday + today almost severe pain on shoulder blades and muscles on surrounding area. Taking into account the lesser intensity and frequency of usual symptoms and increase of new symptoms, should I assume that the antibiotic is working? Would it be a good idea to discuss oral antibiotics option with the Dr.?

Got to go back to work. With the amount of sweat lately, I will be lucky if this PICC line lasts a week more. Doctor said: unexplained, profuse sudden sweating is common of co-infection.
Have a great day All.
Tony.
Tony... How was getting the picc line?? For some reason Im nervous about it.. It sounds like you might be herxing..... Thats great... Im doing very well on my oral antibiotics... definately see a big difference already.. I have similar muscle pain but its tolerable and it comes and goes.. Did you have your picc line done at the hospital?? Dr. R wants me to have it done at his office.. Anyway keep me posted.... feel better
Hi Kelly. PICC line insertion was no problem. Please let me know if you need any advice with that. Had it at the hospital instead of Dr.'s office. I am trying to save as much money as I can without compromising treatment. Kelly, that's great you are feeling better. Keep it up and remember keep it positive. God only knows i'm trying. Today has been a hard day to get through.Had to work at ER. In addition, some crazy grabbed me right on top of PICC Line. Had it checked, looks good. Woke up with some serious muscle pain. At one point, I felt all the pain that from past 10 months was just here and there. It is just not a good day at all. Serious facial muscles pain, muscle twitching, back, neck. I hope to feel better soon but I feel so sick. I hope I am herxing because it's no doubt, the worst pain in 10 months. I will keep you all posted.
Hi Kelly. You have the SPEC out of the way. That is great. I used to have bouts of anxiety before going to LLMD, maybe last one about a month ago. Try to relax Kelly. You'll be all right. We're doing something about this, no more unknown, disease. I too started taking vitamins supplements LLMD recommended. It's about 9 different ones. I just started getting the hang of schedules. It’s a pain. PICC line is fine. Definitely get the PICC sleeve. I have to keep mine covered with gauze for most of the day due to the nature of my work at the hospital and my business. Today was a good day. Just minor aches and pains. Some body fasciculation too. When are you getting your PICC line? Remember, keep it dry and clean. Do the infusion with absolute clean technique. Your nurse will instruct you on how to do it and she'll come over once/wk. to change dressing. Pay attention to the steps. After one week, you'll be a pro at infusing the rocephin.Drink lots of water. LLMD mentioned possibility of gaining weight with vitamins. The possibility has become reality for me. Good luck with PICC and start of rocephin. We'll be ok Kelly. Thanks to Ticker, others at this site and LLMD, we now know a lot more about Lyme and we are on the right track to a normal life. Just hang in there.
Tony.

PS: Did you know president Bush was diagnosed with Lyme? Maybe will bring more attention to this disease and people like us won't have to go through so much for so long, before a diagnosis.
Hi Kelly. I had that same pain on scalp right after start of rocephin to about 10 days into it. Even the wind would cause pain as well as when brushing hair too. That went way as well as most of symptoms. I feel a gradual change to the better. I'll be back to see LLMD sept. 4th. With PICC line, you MUST follow a flush protocol. Mainly, First pull back on syringe to get some blood return and flush with saline (this assures the line is in place) If you don't get blood return, do not infuse meds. call nurse. Sometimes, it takes a bit struggle to get blood return. Infuse antibiotic, Flush again with saline (without pulling back for blood return, lastly, flush with heparin(blood thinner), make sure you clamp the line just before all the heparin is flushed in line. This is to keep negative pressure in that line. No big deal. After one week, you'll be doing it on your sleep. The itchiness also has gone away. It was terrible on the beginning. Only problem with IV. rocephin is the bathroom problems, once a day, almost same time every day, when you have to go, you got to go, make sure you take a very good probiotic with billions of acidophilus. Risk of C-Diff. is huge. Make sure your PICC line will be done under fluoroscopy. It is safer. The doctor that runs the vascular lab. at good sam. is also from St. Francis. He's very good. Hope IV rocephin will do the trick for you. It has certainly been doing for me. You'll need to check your blood for liver enzymes every week. Good luck with it.
Kelly, the pain seems to be going away...it was tough for a while sleeping because my entire chest cavity would hurt when I was lying face down which is the only position I can sleep in. I am seeing a tremendous amount of herxing, lots of tremors and nervousness, rashes, fevers...depression and hightened irritability.I've also been having constant heart palps since I started with the PICC line..all day...My baths seem to keep most of the herxing at bay though...don't know what I would do without them.
For someone like myself who has been struggling with these diseases for 22 years I expect a lot of suffering, so I am not surprised by any of this.

I was wondering if our cost of appts keeps going down..my first was 920, second was 450....I hope they continue to slope down and am considering calling the office to see if we can hold my next appt over the phone rather then travel all the way out to NY city again for a short visit. What do you think?


BTW, what were your co-infections? Do you know which strains of Borrelia you were positive for?
Hi Kelly. Glad it all went well with LLMD. He also started me on minocycline. After second day on it, I had some bad dizzy spells, today it's gone. As far as taking it on an empty or full stomach, I don't know. It's so much stuff that only thing I am watching for is spacing abx.'s from everything else. Early in the morning, I take all the supplements, the probiotics and the milk thistle.
3 hours after I take the orals abx. Azithro. + Minocycline and the IV. Rocephin, all the same time. 3 hours later the probiotis with mid day supplements and another milk thistle. 7PM the oral abx.'s again and at 11PM all the supplements and milk thistle (No probiotics this time). It's just the way I am doing it. I hope It's OK. I added a GNC probiotic to the mix and intestine seems to be liking it. I take all two brands. Other than that, feeling ok today with slight, nagging left sided chest pain. It's a bit of concern because of PICC line but It could also be the bugs. I can't really place the source, muscular or what. Had an EKG and is fine. My other concern, and I have to read more about it, is the formation of nodes in/around heart. I do have some on sternum area and sort of comes and goes and feels painful at times. Read very superficially about spiroquete clustering and only macrolide abx.'s takes care of that. I know Azithro. Is a macrolide and can have some affect on cardiac muscles witch could also account for the nagging chest pain. Therefore, I just have to keep an eye on it and hope for the best. PICC line now is only noticeable when I shower. How are doing with it?
Hope all keeps going well for you Kelly. Take care.
Tony.
Tony... Iam doing okay... I forget that i even have the picc line.. I have no problems with it..I never really had terrible muscle or joint pain due to lyme.. the only thing is sometimes my jaw and neck would be tight and maybe once in a while my legs would get tired quickly but besides that my symptoms with lyme have been all nervous system and neurological... The dr. said that I had bartonella which plays with your CNS.. he said that the zithromax is great for bartonella.. yesterday I was pretty dizzy and had some eye pain but today it seems better... Let me know what you find out about zithro and heart muscles.... I didnt know that it could effect your heart muscles...I havent had any chest pain or palps and dont want any either... Iam glad your doing better.. keep me posted with everything...

Ticker... The bottle of minocycline says to take on an empty stomach unless you have G.I. problems then take with food or milk.. also it says dont lay down for a half hour after taking the med.. Why wouldnt you be able to lay down?? Iam going to take it with food i just cant find time in the day with everything else to take it on a empty stomach...





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