new to fibro board HI! any help with Lyrica info would be great...

Hi guys,

New to your board not although not to healingwell   Hope you can help me with some info on lyrica.... I copied my info from the ms board and am still waiting for a response so figured you guys might be able to help me :)Some might not apply but any input would be good...

I have diagnosed lyme (following at least 10 tests I have a positive although I had been treating with a clinical diagnosis anyway!) have treated for a loooong time and have mycoplasma issues which I understand is common with fibromyalgia following the works of Prof. Garth Nicholson so treating that too now due to undiagnosed lyme for a considerable length of time.. following a recent mri that I might now have ms.  We are trying to establish if it is just lyme or true ms  soooooo.....

Still in the ms limbo.   My neurologist prescribed me Lyrica and Clonopin for now for the pain and muscle spasms....Lyrica kicked my butt even with 3 provigil a day I cannot function at 50mg!  I did not do well on gabapentin either it gave me headaches so I have just taken the 50 1 time a day at bedtime and am going to try and work up to the dose he reccomends...in a week I am meant to be on 75mg 1 tab 2x daily it just makes me soooo dizzy. I am dizzy enough.  Any experience with this drug?  I also take restoril to sleep and zoloft (generic) for panic attacks.  Tried to come off the zoloft slowly did great was at 1/4 of 1 pill a day and they came back so back on them again.  really frustrated with the neuro going to ms specialist now as he still feels strongly ms so waiting for next mri.  He refuses to mri the spine and did not use contrast last time....when asked why he said there is some controversy right now on the dye used and he did not want me to use it. refuses to do an mri of the neck again saying the next brain mri is sufficient.... Druing the EMG I think it is called where they test the muscles (not the one with the needles) the one that takes hours the technician mentioned she saw a definate delay around C3 I had nagged her to let me know if she saw anything and she seemed certain of the issue....the report came back OK when read by the Dr.  My doc has not seen the actual report or read out but will not even talk to the tech and has no intention of reading it saying the other dr is the one who knows what he is doing.  He mentioned that my symptoms are progressing quite quickly and is still unsure if ms or lyme but does not recognize could be both....UUUGGGHHHH. 

What should I do about the Lyrica?  I hate feeling more dizzy than before.  I dont drink as I hate feeling off balance and that was bad enough before taking this now I am a mess.  Will my body get used to it?  I think it is beneficial in other ways...

Any input would be great

Thx

Carolyn

Maybe it's the other pill causing you to feel like that.  I started Lyrica (75 mg) a week ago.  I was prepared to feel loopy and tired, maybe even a bit of nausea.  I was so surprised that I didnt feel any of those side effects, not even tired at all!!  I have been in a major flare for a week now....and the pain is very intense, however...this past week is the first week in years and years and years, that I do NOT feel tired through-out the day like I used to.  It is wonderful to not feel like that...and this is despite 4 nights of poor sleep!!

I think its the clonopin that is kicking your butt, but thats just my opinion.  Others felt loopy for the first couple of days after starting Lyrica, but like I said..I didnt.

Hope this has helped you in some way

P.S.  If I wasnt so sore right now..my energy level would probably let me do a whole lot more in this house than ever!!

you guys are AWESOME thank you so much for all the info. Yes the mycoplasma issue is huge. Truly I feel it is the root cause for fibro maybe the trigger. It is well documented that even after beating lyme most of us are left with fibromyalgia and it is intolerable I know. Mycoplasma testing is not something people know to ask for and tetracycline for a long length of time is meant to help... Before all the diagnosis I was poo pood so many times and the doctors are still learning so much about fibromyalgia. Either they embrace it or just ignore it. I know it is a huge issue and I think my biggest issue is the mycoplasma. To date that has been a constant battle. Also due to the nature of the bacteria I am so scared for my family as they exhibit some symptoms and I am sure they are myco related. The Lyrica does help me I am sure. I have been able to back off the other pain meds but I am just going to give it a little chance to see if I can build it up as I do think it is worth a try. I was wondering....do you all suffer the normal everyday colds? have you noticed that you don't have them? I was told by a microbiologist that as my immune system is in hyperactive mode that is why I do not get them. Bizzare. Pregnancy although a huge surprise was amazing I was well....got colds....soon after the hormone changed back following birth I was ill again much worse and also have massive panic attacks till I was put on zoloft...... there are too many similarities between all my possible conditions....
Thank you for your kindness and help with my questions. God Bless you all. If you have not had the chance to look particularly at Prof. Garth's work I reccomend taking a look. I wish he would just take me in his lab and experiment as much as he wants just to end this battle. I am tired of being tired and sick of being sick :(

Hugs,

Carolyn

Hi Marlee,

I had the testing done through my doctor. Labcorp does some testing some....another was located during a spinal tap and there are others to test for also but my doc is an intern and really open and said that it is all treated the same way so I am not going to pay for more testing....my neurologist for example does not understand or care about it even if I take him research papers...thinks it just makes him angry that I am so presumptuous but I am not trying to be....I just know that so many conditions can be improved if we treat that....even ms is thought could be the cause of an untreated pathogen.....he is not a researcher and does not plan to look into anything even though during his tap my EBV showed re-infect and my myco was through the roof....makes no sense. I realized a long time ago that I have to figure a lot out myself or I dont know where I would be. 1 doc out of my 15 visits when I first got sick told me that I needed phsycological help...I was like thanks a lot toe rag. I had some really big issues with my WBC count and SED rate at the time and it was clear I was very sick. Now my blood is fine but I am still sick. Throughtout my life I would notice that my glands in my neck would swell up and then I would be fine! Almost as though my body was in battle all the time with something...then I had walking pneumonia to my surprise in 06 I just had some funky pains in my ribs no cough....and never recovered. I think it triggered everything that was to follow. The found a benign brain tumor in the proccess and to add insult to injury it was not the cause of my issues! so had to deal with that until it was found I had lyme through clinical diagnosis then 10 tests later got a positive! hard to treat on faith so kept trying to make sure that was part of the issue as I was downing antibiotics and at one point had a picc line even so...glad went on faith. I am going to see my doc on the 30th and will ask for tetracycline. I did start my minocycline after 3 months of being off and herxed so bad but it is a good thing....easy to get complacent and cover the issues with pain meds and just cope but decided enough was enough and I want to be well again so boxing gloves are on and I will so whatever it takes to be the old carolyn again... Interestingly enough I had a chap wirte to me from the UK I am also british but live in the US and he mentioned he has fibro diagnosis but mentioned it started with really loud tummy grumble noises....long before I got sick I had this and I was a national sales trainer and it was soooooo embarrasing and my husband remembers.... he said it is a sign of mycoplasma building up...following some research it seems it can be the case kind of like a leaky gut...

Anyway sorry to go on so long have to get the munchkin he is screaming...no rest for the momma today!

Hugs,

Carolyn

Hey if you need any more info call me if you like 757 721-4134 :) I am in VB