Lyme Disease Support Group

Hi All, ok, first off, nobody needs to take this as the Bible of treatment, we are all just going to throw ideas out there of what has helped us, what hasn't. we can read all the books we want, and it's not the same as real experience.

that being said, let me also say EVERYONE IS DIFFERENT, NO ONE TREATMENT IS THE SAME! lyme has so many co infections, and strains what works for one, possibly wo't work for another, so this is just where we can share our stories. nobody needs to get up in arms over anything, please don't be afraid to post in light of our recent issues here, as you know i will NOT tollerate it from anyone anymore, this is aplace we can be open and honest. not everyone has 3D help at home, and this is our home for lyme.

so share away! i'll pst my treatment later, two sick babies to take to the docs now

Hopefully starting tx in 2 1/2 weeks. I'll post away then. Please wish me luck that she doesn't turn me away due to money or something.

Wolfpack

sweetie, praying for you. ask if they have financial aid, and if you need help finding another doc, let me know thru a pm ok.

Hello! I am still on the long road.....any suggestions help at this point. I started antibiotics in Jan08 and am still on various ones along with Lyrica. I take Cymbalta and Wellbuterin as well. I take vitamins, fish oil, acidolphulus etc. I am giving myself glutothione injections and B12 Injections 2x week. I am constantly battling yeast infections and UTI's. I have good days and bad days. Does anyone have jaw pain? I am clenching my jaw muscles and causing ear pain as well as lower jaw / teeth pain. I try to stop but I can't. It almost seems like it is an uncontrollable twitch or muscle spasm. Thanks for your input!!

Sheila

Well, I was misdiagnosed for 7 years and only recently was diagnosed with Lyme, but some of the meds I was already on still work for this so here they are: Neurontin 1200mgs three times daily- Neuropathic pain in my legs and feet

- morphine sulfate extended release 15mgs three times daily- major pain all over my body (flu-like)

morphine sulfate instant release 15mgs three times daily- for break through pain

Vit D3 4,000iu's each day- I had a severe Vit D defiecency, which causes muscle pain all over

Wellbutrin 150 mgs twice daily- Depression has been a huge battle for me especially after I found out my diagnosis

Doxycycline 100mgs- Only For One month I'm pretty sure this isn't enough

Xanax- 1mg thee times daily (I don't usually take it but for sleep, but over the last 2 months anxiety attacks are much worse.)

Hycosamine- for IBS cramps

Sennacot- for constipation

Nexium-40mgs, 1*daily

Probiotics- 2*'s a day

Olive leaf extract- 75mgs 2*'s a day

Mulivitamin

Vit B's

Baclofen 10mgs, 3*'s a day

Nasocort 2*'s a day

Xyzal- for allergies

Voltaren Gel

Lidocain ointment

Epsom salt and MSM in my bath water every night

Lyrica just about killed me, if it works for some people it's great, I myself had much less pain while I was on it, but I had water outside of the cell's in my body, this caused a lot of water weight gain, 17 pounds to be exact. This really embarrising putting this out here. I usually don't tell anyone all the meds I'm on b/c I don't want to judged, but if any of this helps anyone in need it's worth it to me.

All of these meds seem like so many, but the doctors had misdiagnosed me for so long I have no idea how much damage was done to my body. I do know there are many days I can't get out of bed b/c I hurt so bad. When I was in "remission" I got off a lot of this crap, but I'm in the middle of a relapse. I also had read about the vit. c and sea salt so that is something I would like to try.

Thank you so much for sharing. I feel like I am on alot of meds too. I am glad we all understand what it is like. My family has no idea about how these meds can make me feel. I will have my last IVIG treatment this week (2x month for 6 months). I will go for blood work and see how my immune system is doing. Has anyone else been doing the IVIG? (gamma globulin).

sbrose,

I really wanted to mention that I missed your earlier post about your jaw pain. I really suggest you see your dentist. I was having some severe jaw pain, ear pain, clenching of my jaws, including clicking and lockjaw. My dentist diagnosed me with TMJ several years ago, but nobody ever mentioned it to me. I've had 3 crowns and 2 root canals without realizing I had been diagnosed with TMJ. The pain got really, really bad last year, and when I saw him for it, he insisted that the only way we could deal with it was for them to make a special appliance to fit on my bottom jaw, mainly for during sleep. I actually often use it during the day if I'm having problems, and I can't TELL you how much better it's made me. I used it for a week almost non-stop, then gradually was able to start taking it out more and more. I now use it almost completely for sleep, but sometimes have to keep it in during the day. Mainly, when I'm stressed I find the need for it during the day.

It was expensive, and my insurance only covered about 2/3 of the cost of it, or maybe even less... We're still paying this sucker off, and I've had it a good 8 months or more. But, I would do it all over again, and if it ever breaks or anything ever happens to it, I'll pay to have another one made. It is a jaw and tooth saver. My ear pain is almost nill now, too. I know the 2 were completely related. Please don't wait!! You'll be so grateful you did something about it. It took us about a month to get it, and then mine had to be fitted properly, and they ended up grinding my teeth just a bit to adjust my bite so that I wasn't hitting anything with my teeth, they wanted me to "slide" on the appliance properly. Depending on your bite, they may want to do the same with you. It didn't hurt or anything, so it was no biggie at all.

If you want to talk more about it with me, please feel free to PM me. I'll give you all the details you want. It was virtually (nearly) painless and completely worth it. The worst part was honestly having to open my mouth as wide as I needed to and keep it open (for both the impressions and adjusting my bite. I was sore for a couple days after the impressions and adjusting, but again, I'd totally do it again!

*hugs*

Jen

Hi everyone, I'm new and glad to have foundthis group, seems like a nice group ofpeople. I'm now on my last week of IV Vancomycin, my doctor wants to stop it since I've shown no improvement after 5 weeks of taking it twice daily. Prior to that I had a month of IV Rocephin which also yeilded no improvement. I've also been on rifampkin, levaquin and doxycline in the past. I take 80 mgs of oxycontin extended release every 12 hours and usually a 30 mg immediate release once daily. I know that's some big time pain killers but my leg pain is the most excrutiating thing I could possibly imagine. Even with it if I stand for any length of time it hurts and I've recently decdied I need to give in and ask for a wheelchair. I can no longer grocery shop, make dinner, walk around the block...if I am on my legs for long the pain starts and won't subside for at least that day and sometimes beyond. I've taken Lyrica and that didn't help me and I was taking a lot of those before we discontinued it. I'm now taking neurontin but I'm not seeing an improvement with that yet and I've taken it for a month. i don'ttake as much as the doc prescribed though since I worry about anything that could add to the fatigue. The fatigue is extreme, periodically I take Provigil for it, but I find it only helps a little and when I take it I need to take a sleeping pill at night. I take sublingual b complex with a lot of B-12 and am thinking of that 6 hour energy stuff that claims no crash effect when it wears off (haven't tried it yet though and worry it might stress the adrenals).I also take Wellbtrin twice daily and Klonipin at night. I take Lunesta as needed for sleep. I was just switched from Allegra to Singular for allergies because the doc isn't sure if the Allegra isn't working or if I'm just having congestion because my daughter just started Kindergarten and has been sick a lot. My doctor also has me take nystatin to prevent yeast infections and probiotics to counter the AB's. He wanted me on Coumadin due to the picc line but we settled on aspirin instead since I'm not happy with taking all I do to begin with! I'd be interested in any advice on what i take, or feedback of other things that may help. I'm to have the picc line removed next week because they haven't been getting a blood return and the doc is stopping the Vanco. He's ordering more labs for co-infections but so far those have been negative. Not sure what he wants to try next and getting pretty darn discouraged that nothing helps.

I am so sorry that you have been going through this rough time. I hated my PICC line when I had it. I hope you start feeling better soon. As everyone keeps telling me, take it one day at a time. It is frustrating though. do you have anyone whol can grocery shop for you? Please PM me if you would like to talk.

Sheila

I am making good progress: bitten by tick May 1. 2008. Lyme Western Blot positive Early October. ELISA lyme titer 1.30-- literature shows cure at 30 % reduction in titer. I will be tested again in about 2 weeks. I will continue treatment until a reach about 0.9 titer.

In mid October I started:

membendazole 100 mg for 14 days

cefuroxime 500 mg once a day (now for three weeks)

cozaar 25 mg once day ( at night)

vitamin c, magnesium and zinc

The only symptoms I have is s slight tingling in my muscles a few times a day. Still have to have an echocardiogram to determine if there was any cardiac damage from when I was really sick.