Hi Greg I am sorry to hear about your mother. That is terrible and I can understand your quest for more info. LDN is taken for several conditions and from my understanding stimulates the immune...
LymeFrustration My story is similar to yours. Dx with MS in 1999 and Lyme in 2005. I have spinal cord lessions, and my LLMD also thinks Lyme induced MS. I would be interested in knowing who the neuro...
Hi Moofty If you made a recovery on abx then that tells me your problem is bacterial in nature. The injury could have taxed your immune system in some way. That is what happened to me. Ok until after...
blue - Good question and as someone who is in a similar situation (MS, Lyme or both??) one I am always asking too. The Drs do not seem to know whether my problems are untreated lyme for so long...
jdub1a I am sorry you are going through this. Since you do not seem to filt all the diagnostic criteria for MS as per your Dr, and have not gotten a dx yet I suggest you look at some other...
Hi Michelle I just wanted to say I am thinking about you, and all you are going through now. Gracies Mom gives good advice and I asked her to look at your post because I know her daughter's symptoms...
Zoe and madlou Any Dr can rx the ldn. My lyme dr does even though I am taking it for MS. LDN has many uses. Best to find a Dr who is open minded. I have not found any neuros to be, and I have seen...
Zoe I've had the LP done twice. They give you a shot first to numb the area. I sat on the bed and leaned over whie they did the spinal tap. It didn't hurt but you have to be still. I had to lay flat...
Zoe there is a high percentage of false negatives, and even higher with the standard labs (quest, labcorp). Testing neg doesn't mean you do not have lyme. If you have any questions about the testing...
zoe I don't think it is proven. There is a lyme Dr, Dr P in Ct who has done some research and written some papers about the connection between the two diseases. He is a smart guy who graduated from...
Hi Terri welcome to the board. I am one of those who was misdiagnosed in 1999. I have lyme and probabally did then too (looking back at test results) although 6+(I've lost count) prominent neuros...
I totally agree, leave no stone unturned. I've learned that the hard way....
Zoe I would be glad to share what I have learned and the similarities between the two diseases. Would you mind if I e-mailed you?...
madlou The "Real Drs", misdiagnosed me for many years( 8 in all and some who were prominent neuros and researchers) so I don't think they know everything. If it is harmless, as homeopathy is, and you...
Zoe I am on LDN and it has helped some especially bladder issues. I recommend checking it out at www.lowdosenaltrexone.org . There are practically no side effects (disturbed sleep for a short time),...
Hi Marie-Claire Have you heard about the study being done on Crohn's at Penn? They had such favorable results in the first part of the study with the effect of low dose naltrexone on Crohn's, that...
Carolyn Where did you get yours? If you have any sites that talked about rife helping MS I would appreciate it. I will look into this. I think it is good to investigate all options, conventional and...
Carolyn I will be interested to hear how you do. I have walking issues too and my lyme Dr thinks I have possibly developed MS as a result of lyme being untreated for 20+ years. MS is my orig dx but...
CeCe I can sympathize with all you are going through. I have gait problems, and use a cane as my left leg drags. My balance is terrible and I have falls too. A year and a half ago I fell and broke my...
Anthony I am sorry you are feeling so badly. It is frustrating to feel so badly and yet tests come back normal and the Drs don't know what is wrong. Keep investigating. Your symptoms are not normal....
Thanks Lynn...
Lynn I would be interested in knowing what bad side effects you read about with LDN? I could find nothing other than sleep disturbances as in vivid dreams in the first week or two....
Vickie I have been taking Ldn since nov '06. I noticed a huge improvement in bladder symptoms starting at day 10. My excessive hair loss which I have ahd my whole life stopped by month 3 on ldn. It...
Congratulations Anita! I have heard too that MS symtons usually go away during pregnancy. I second what tkelly said cause I was dx after my 2nd child was born and never had any problems or symptons...
sylvie74 I haven't had this test done so I don't have any answers for you. I have heard about this test and was told it can be painful. What can you tell me about the test?...
Eleanor You can click the envelope icon under my name to send an e-mail. I'm not sure what other way you mean....
Hi centralnjgal I can appreciarte your confusion, as I am someone who has been dx with MS 7 years ago and now treating for lyme. It is hard to know what we are dealing with. Even the Drs can not give...
Hi Eleanor I know Aberdeen well as I grew up in a neighboring town. I now live south of there. There are co-infections such as mycoplasma, babesia, erchlichos (sp ?), bartonella and some others. If...
Hi centralnjgal I am sorry you are having all these problems. I have had some of the same symptoms too. I am in central NJ (shore area). You too? I second what uppity said about lyme. I was dx with...
shellypoo that's great you have found something new that may work for you. Exciting! Just wanted to mention something that has helped me with my bladder problems tremendously- LDN, low dose...
Hi noahshark I am sorry for all the pain you are going through. I know how difficult it is to have pain that others in your life don't understand and the uncertainity it causes. I have alot of pain...
I am in that group you are asking about . Dx with MS 7 yrs ago and lyme 1 1/2 yrs ago. Lyme mimics MS in many ways....
Uppity you are correct about the tick bite. The percentage of people who get the rash is very low (less than 50%). Also some people get a rash but it isn't the typical "bulls eye" rash. My daughter...
Neurogurl I can understand your frustration with these symptoms and not knowing what is going on. I would suggest to keep researching, keep pursuing answers, and see other Drs. Drs do not know...
Thank you Kimber. I will keep you all updated. Have only been taking it now for alittle over 2 weeks....
If anyone is interested in LDN check their website. They list several reliable compounding pharmacies who will ship the meds to you. My months supply was $20 which included shipping, so I don't even...
SammyJo How long before you knew ldn was working? How much magnesium do you take? I take some but maybe it is to small a dose. I think anything that boosts the immune system would be good for lyme...
SammyJo I'd like to hear more about your experience with LDN. I started taking it on 10/31 and have noticed increased stiffness. I am already so stiff (walk like Frankenstein with bad balance, what a...
I had heard about the MS society giving Dr Zagon some money to start a study. I am encouraged that the MS society thinks enough of the ancedotal evidence to fund the pilot study. It's a start. I am...
Snowdog Glad you posted about this. I have posted here and another board about LDN and got few responses. I have researched this too and after presenting my Dr with the research and her looking into...
Shashi I'm probably going to get blasted here but I am going to say it anyway, check out lyme. I had a MS dx for 6 years before I found out I have lyme. I was tested for it early on but was never...
Hi pegleg Can totally relate about how fit you were a year ago. Me too. Went to the gym 5 times a week, took pilates and now hunched over and using a cane. I feel like I went from a young, athletic...
I was dx with MS 7 years ago. I have lyme also, so I read both boards. I have every right to be here. I don't know why some here are so defensive. When people come to the lyme board (MSers included)...
Hi Soulflower Thank you for your post. It is good to know that not everyone considers those who have lyme and makes the suggestion to check out lyme is not a fanatic. I have been there and want to...
I was trying to help someone who is questioning her diagnosis ( or lack of) by telling what happened to me and offering a suggestion for another route to investigate. It is a fact that MS and lyme...
doorway4 just wanted to add to what someone said earlier about other diseases that mimic MS. I was dx with progressive MS 7 yrs ago and found out a year ago that I have lyme disease. I had been...
Hi Vanesr I am glad you feel this may be helping you. To notice an improvement in such a short time is encouraging. I too am having a hard time finding someone to prescribe this for me. My LLMD was...
Nice to meet you too Kimber. Thanks for your reply. I will definately check out that site....
Hi everyone I usually post on the lyme board but I am very familar with MS as I was diagnosed with a progressive form 7 years ago. I have read about LDN being used for treating MS with much success,...