Razzle and Marzena, thank you for your responses. I am taking several supplements including B Complex to help repair my nerve damage. For some reason vitamin B causes muscle twitching for me and...
Hi Traveler, Thank you for your response and well wishes. It seems so strange to me that while many lymies do experience some neuropathy, very few seem to be effected in the way that i am. I have...
I have been away for a while, but I hope that everyone is doing well in their pursuit of finding improvements. I have had Lyme since June 2009. I was diagnosed within 6 weeks and received antibiotics...
Linda, Thanks so much for your response. I have been having some trouble with balance and walking and my neuro thought that ivig might help me with this. To tell you the truth, I haven't seen any...
Hi Susieq64, I was on iv-rocephin last year for 30 days, i had a picc line and my dose was 2 grams per day. Good luck with your treatment, i hope that it brings you improvements in your symptoms. Gary...
Hi CG, It's good to see you here again. I too have gone missing for a while, but I stop back from time to time to see who is still here. I have been continuing treatment with antibiotics and just...
Just currious to see if anyone here has had ivig therapy for MS. I started my initial dose at the infusion center at my local hospital this week. IVIG is a clear immunogobulin treatment created from...
It is interesting to me how you describe the dropping sensation as if on a roller coaster. I get that same dropping sensation or tickle feeling and describe it to others including my neurologist the...
Hi Leah, I had this problem last summer when I was very sick with Lyme. I would veere to the left and found it nearly impossible to walk straight. It did resolve after several weeks on antibiotics. I...
Victoria, This is all to familiar to me. I had the worst brain for for nearly nine months straight and one thing i could absolutely not do was put things in order. I have continued working while...
Hi Razzle, I have done 9 months of antibiotics and was starting to see some improvement this past month while taking Ceftin and Mepron. This past Monday I felt the best that I have felt since getting...
I had a lumbar puncture last January to check for MS and menengitis.. My spinal fluid did test IGG positive for Lyme. I had previously tested positive for Lyme on the Western Blot....
Hi Jackie, My symptoms started in early June 2009. I was diagnosed with Lyme six weeks later starting treatment in July 2009. Ufortunately, I am still taking antibiotics trying to recover from severe...
Hi Jackie, I had a lumbar puncture this past January and the procedure was not painful. I didn't get the expected headache, but did have some pain in my forearms and had a stiff neck. If you...
Hi Marlene, Welcome to the Lyme forum. So sorry to hear that you have been suffering for so long with this illness. We can all identify with many of the symptoms and challenges that you have been...
Rachel, I live in Connecticut and see a LLMD in NY just over the CT border. Please email me if you are interested in his contact information. Gary...
Yes. I'm currently taking Mepron and Ceftin and it is covered by my insurance. I really don't know what the limits are on my prescription drug coverage, but so far they haven't rejected any claims. I...
Hi Simela, I am not taking doxy currently, but I did have severe stomach pain when I was, I struggled to finish the medication. I had to be very careful about what I ate when on doxy. I haven't had...
I always take my abx with food regardless of what the label says. I do not recommend taking another pill unless you are instructed to do so by your doctor. I have the blurry vision too, don't know if...
Hi Mamyou, Welcome to the Lyme forum, I hope that we can be of assistance. When I first got sick, I took Cipro and got the metal taste in my mouth that you describe. I haven't noticed this with any...
Eric, Most Lymies avoid steroids like the plague, I don't think you are getting the best advise and treatment. The lumbar puncture is a pretty radical method of determining that you have lyme and not...
Hi Jenn, Sorry to hear that you have had such a difficult time these past few years. Everyone here can certainly identify with your story as many of us have walked a similar path in our battle with...
Hi Eric, If I were you, I would not waste time with the neuro and spinal tap and get yourself to a LLMD (Lyme Literate Medical Doctor). When I first got sick with Lyme, I spent a lot of time working...
Hi Simela, I would ask about the treatment strategy. Some doctors pulse the antibiotic dose and others don't like any breaks in treatment. There are many docs out there that will also include...
Hi Mike, I started strictly following the lyme diet about six weeks ago with the encouragement of my lyme buddies here. I have lost 11 pounds so far and am more motivated now and don't have any...
Hi JoAnn, Glad to hear that you are finally noticing some improvements with the IV-Rocephin. I am currently taking Ceftin which I understand is the oral equivalent of Rocephin and have been noticing...
Hi Abbey, Glad to hear that your evoked potential test came back normal. It is my understanding that fibro is not a disease but a list of symptoms that are the result of another medical condition....
I'm on the no sugar, no carbohydrate diet too and feel exhausted most of the time. I have adjusted to the new eating plan, but can't seem to muster up any energy. The only good news is that I lost 5...
I didn't notice any improvement on IV-Rocephin until the third week. I worked full time when having the picc line in too and remember being exhausted. Hope that you start to see some improvement...
I have lyme too, but am very concerned that it may be progressing into MS. My Neurologist even told me that he thinks that I am somewhere between chronic lyme and MS. I had a couple of eye events...
That is good news. Sorry that you didn't start out in the Radiology department, I'm sure that it would have saved you some discomfort. Have you received your initial dose of Rocephin? If yes, did you...
Has anybody's LLMD advised them about taking the appropriate precautions? Mine did not, but you can be sure that I'll be asking about this at my next visit....
Newfaith1964, I hope that you get the tests that you need to help determine the best treatment to return you to good health. Please keep us post on what you find out. Hope that you feel better soon....
Should we assume that you are taking high dose antibiotics? You are fortunate to test positive so close to developing symptoms, it took me six weeks before my western blot came back positive. My...
With the amount of time that this illness has been around, I would assume that it would be quite evident by now if this were true. I think that because our spouses are exposed to the same risk...
I have had the sciatica shooting pain down the leg in the past that I believe was the result of using a leg press machine at the gym. It would usually last a few days then resolve. I haven't been to...
Hi Josh,Welcome to the Lyme forum, sorry that you have the need to be here. It is good that you caught it early and started treatment right away. You may want to see a LLMD (Lyme Literate Medical...
You may want to include a Western Blot blood test to rule out Lyme Disease as a possible cause. Last year I had lower back pain along with flu like symptoms. I initially went through many of the same...
I did get hives almost immediately on my first dose of IV-Roecphin. My doctor gave me an epipen and made me promise not to dose while alone. I took benedryl prior to dosing for the first week and...
It was not painful for me when I got my picc line inserted last year. They performed the procedure at my local hospital using a floroscope to guide the line into the proper position. They used...
Hi Leah,I have Lyme and the same symptoms as you minus the headaches. My neurologist is monitoring me for MS because my spinal tap this past January revealed possible MS. I would caution you about...
Hi Newfaith1964, Welcome to the MS forum, sorry to hear that you are not feeling well. How long have you been dealing with the tingling and pain? Is this something that just started or have you been...
My LLMD evaluates my progress at each monthly visit and changes up my medications as needed. I would not delay in starting your medication and I recommend following your doctor's advise if you want...
Hi Leah,I have chronic neurological Lyme and have had several MRI's and a lumbar puncture this past year. There are new open MRI machines that aren't as scary as the older machines. You might want to...
I really appreciate all of the great responses from everyone. I now feel more motivated and have a better idea on how to be successful. Wishing everyone that is following a special diet continued...
You guys are great.... Thanks Denise!...
Lisa, Wishing you all the best with your treatment and stay at the Hansa center. So many have reported success and healing at Hansa. We are all pulling for you and look forward to hearing about your...
PattiB, Thanks for all of the great meal ideas.... That could definitely work for me. There is not much that I don't like so I guess it's a matter of making a few adjustments here and there....
When I first saw my LLMD, they instructed me to avoid simple sugars like cakes, candy, cookies and fruit juices. I followed this strictly for about two months only cheating a few times... Had some...
I'm pretty good at avoiding simple sugars like cakes, candy, fruit juices, sugared cereals, cookies, etc...The tough things for me are healthy cereals, breads, pasta, potato, rice and fresh fruits....