I had a bullseye on my arm about 10 years ago but was told by my doctor that it looks like Lyme but I can't get it here. I wasn't sick so I didn't go anywhere else.
I've been sick for 5 years. I had fibromyalgia (with a ton of symptoms, a couple of seizures. I broke out in terrible itchy rashes for about 1.5 years, during which I received both antibiotics and steroids. I guess they cancelled each other out.
Last year, I got neuropathy which spread quickly and my neuro said was not a simple peripheral neuropathy (whatever that means). ELISA tests up to this point were negative. I am full of arthritis, all disks are bulged and many pinched nerves.
Last winter, I got three cortisone injection sessions with my pain doc. After this, I had trouble breathing, my hands and face got weak and I could no longer laugh or cough because these muscles were so weak. My neuro is looking at MS.
I finally got some answers with Lyme and decided to find an llmd. The one I found is not very knowledgeable (I don't think, anyway). He never took a history on me and when I started volunteering it (after he saw me twice) said that I don't really have MS because I haven't tested positive and he has other Lyme patients who tested positive. Huh?
He doesn't think that antibiotics are the answer although he prescribes them. He has some very strange practices, like MSA to determine if you have Lyme and coinfections. They take a ton of blood from me every time I go yet I never find out what it is for.
I have never been so sick. But he put me on doxy for a month and sent my blood to Igenex. Here are my results:
NEGATIVE
IgG 41 kDa +
IgM 30 kDa ++ 31 kDa IND 58 kDa +
Apparently, I am supposed to go off antibiotics in order for this to be more accurate? He had me take them for a month with no stop before the test.
I had the bullseye. I can't believe that I had a bullseye, was healthy until five years later, then got all these illnesses, so bad that I had to go on disability (which I am currently fighting to keep) and - I don't have Lyme.
First, I know that there are not many llmds around. If you don't have a good one, what to do? How do I find a good one if no one will discuss them? If I stay with this doctor, I will have to learn everything I can so that I can tell him how to treat me.
Has anyone here tested negative but really had the disease, for certain? It looks to me like everyone tests positive. My CD57 is 20.
Has anyone had atrophy in muscles and had them get better with treatment? My hands, my leg and arm, the laughing and coughing, it is scaring me.
Thanks to you. I need some friends, I feel so alone with all of this and I'm scared.
lucy
Posted by lymeladyinNY (Member # 10235) on :
Hi Lucy - your Western Blot looks like Lyme to me.
Go to the Seeking a Doctor forum. Someone will private message you about a LLMD closest to you.
Your CD57, as my LLMD would say, is in the toilet.
You've been suffering for a long time. You need a good LLMD to help you.
No more steroids for you. They aren't good for an immune system fighting Lyme disease.
Neurologists and Infectious Diseases doctors, in general, will not help you with Lyme disease.
Hope this helps, Lucy. You'll get lots of advice and support here!
lymelady
Posted by bettyg (Member # 6147) on :
quote:Originally posted by lucecaboose:
Last winter, I got three cortisone injection sessions with my pain doc. After this, I had trouble breathing, my hands and face got weak and I could no longer laugh or cough because these muscles were so weak. My neuro is looking at MS.
He doesn't think that antibiotics are the answer although he prescribes them. He has some very strange practices, like MSA to determine if you have Lyme and coinfections. They take a ton of blood from me every time I go yet I never find out what it is for.
I have never been so sick. But he put me on doxy for a month and sent my blood to Igenex. Here are my results:
NEGATIVE
IgG 41 kDa +
IgM 30 kDa ++ 31 kDa IND 58 kDa +
Apparently, I am supposed to go off antibiotics in order for this to be more accurate? He had me take them for a month with no stop before the test.
I need some friends, I feel so alone with all of this and I'm scared. lucy
welcome lucy! yes, you have lyme disease based on western blot positives, etc. above and your history background that only an MD can diagnose you with lyme.
go to top of medical and read thoroughly the post from TINCUP ON EXPLANATION OF WESTERN BLOT results.
yes, NO MORE CORTISONE/STEROID INJECTIONS FOR ANY OF US! the spirochetes go wild; i never knew this either, and have had many in past where ... yes, i got much worse.
you've found your NEW LYME FAMILY/FRIENDS who are walking in your shoes. earlier i sent you my lyme newbie's package. so start reading, skim it first since it's long for a feel of what is in there ok! Posted by Michelle M (Member # 7200) on :
Hi LuceCaboose. I love the name!!
Despite the overall label of "negative," that's actually a positive western blot...check out that 30 band!! Read Dr. C's explanation of western blots -- it's pinned to the top of this forum. It will help.
You're right, there's no actual "test" for MS. It's a collection of things that lead a doctor to think you have it. One indicator is oligoclonal banding in your spinal fluid, though this is possible with lyme, too.
Your having had a bullseye rash in the past and now these positive bands, along with your symptoms, seem really like a no-brainer to me. I would question also the matter of coinfections -- breathing difficulties are reminiscent of babesia infection. You really must address coinfections. If this doctor has not broached that with you, it's unlikely that you can teach him what he needs to know.
I would post under "Seeking a Doctor" and see if you can find an LLMD who's recommended by others here.
There is LOTS of hope. Please don't feel alone. Post often!
Michelle
Posted by TerryK (Member # 8552) on :
I do not think that your doctor is an LLMD. Red flags all over the place. Find an LLMD that is a member of ILADS (International Lyme and Associated Disease Society). www.ilads.org
A bullseye is diagnostic of lyme. There are many cases of seronegative lyme disease. That is, proven infection with negative tests. Plenty of autopsy reports to prove it.
Lyme is a clinical diagnosis and you can't possibly be evaluated for lyme disease without the doctor taking a history!!
It's clear that you've had lyme if you've had a bullseye rash. Was this documented by a doctor or did you get a picture of it? That would help a great deal.
Go to seeking doctors and find a real LLMD.
You can get better. I've been sick for many decades and my neuropathy is sooooo much better after a year on abx. I'm still sick and have several co-infections to treat but I know I will get better. There are many examples of people on this forum who have gone from bedridden to a normal life.
Best of luck to you, Terry
Posted by Lymetoo (Member # 743) on :
***Last winter, I got three cortisone injection sessions with my pain doc. After this, I had trouble breathing, my hands and face got weak and I could no longer laugh or cough because these muscles were so weak.***
That is VERY indicative that it is Lyme you are dealing with. Steroids suppress the immune system, allowing the Lyme spirochetes to take over.
But besides that, you have the positive band 30 [&58, 31] as Michelle pointed out and the bullseye rash which is proof enough!!!!!
From the above link, "In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.....The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
Read the entire link, including the REPLIES to the original post.
As for a dr [LLMD] we can help you find one. It is done through private messages.
They will be able to help you. Ann - OH
Posted by lucecaboose (Member # 13058) on :
Thank you, all of you - SO MUCH. I will read everything carefully and will read all the links.
I didn't get a picture of it. It was a long time ago. I wish I'd thought of that.
The llmd that I found IS a member of ILADS but he thinks that lyme should be treated with vitamins, herbs, things like that. He does give abx but he seems more interested in getting me to buy vitamins from him and to pay for these weird things that my insurance won't pay for. I think that his main business is natural remedies and unusual therapies like light beam therapy, MSA, applied kinesiology, and since this is what he knows, he is sure that it will heal Lyme. Antibiotics are kind of against everything he believed in before he started treating LD.
He had me do MSA and because of that, he said that I have Lyme, erlichia and parasites. Have any of you had MSA and do you believe in it? I will search and see if there's anything here about it, but I was just curious as to what you thought. I thought it was hoo-haa but I could be wrong.
I might be able to tell him what to give me if I know what it is. I just think he doesn't know much because he wants people to get better other ways.
I am so thankful for all your answers to me about the test - that it's positive, and all the links you sent. He thinks it is negative, and he said that if I had it, it would have been positive because he gave me a month of abx before I had the test. I have been trying to find out what I did wrong, and it looks like I have to go off abx for 10 days before I get retested? Is that right? How long should I have been on abx before I take the 10 days off and get retested? He uses Igenex and does the test on Tuesdays.
But I thank you for telling me that it is a positive test. I didn't think that these bands meant much when I looked them up. I am missing the crucial bands. And shouldn't I have had more in the IgG, since the bite was at least 10 years ago?
I am on a waiting list for someone who is 2 hours from here, but they told me that it will be months and months of waiting. And I have no idea if that llmd is any good. How do I found out if someone is good? The search link only lets me do three searches and it doesn't really list what people think of each doctor. It would really be helpful to have a U.S. list with comments about each LLMD. I understand why the list can't be openly available, but it sure would help if it were something that we could make and email to lyme victims after they pass some kind of test or something.
Anyway, there are so many strange things about LD and my llmd makes me think that maybe I really don't have it. I have a disease, yet it doesn't exist, the doctors who treat it have to stay hidden, and the treatments are complicated and I have to be on them for years. I don't want to test for coinfections because they are so expensive and if I can't get a positive Lyme test, will I get an accurate coinfections test? What do you think?
Thank you, thank you for your help! There's so much I don't know and everything out here is confusing to me. I read about how this goes into cysts and you have to take meds to bust the cysts. How do you know how to treat all this?
My llmd DID says that he would put me on IV abx (maybe - he was kind of mad when he said it, like it would be inconvenient for him), if I get a positive Lyme test. I've read a lot about what you've said about it (Rocephin). I don't have a gallbladder but I will still need to bust cysts.
And so many of you get shots. How do you learn all of this? My brain is gone. After my last sessions of cortisone, I lose days and weeks. I can't tell you what I did yesterday. I often have to pull over when I am driving until I remember where I am (and I live in a small town).
Are many of you on disability? I am appealing SSD and I have to see the judge in October. I have to say I have other things because I have not tested positive for Lyme.
Sorry that this is so long. I just have so many questions and am so thankful that all of you are here. There is so much good information, even if a lot of it confuses me.
lucy
Posted by bettyg (Member # 6147) on :
lucy, do you have a lawyer for your SSDI, DISABILITY INSURANCE BENEFITS CLAIM?
did you receive a letter saying your admin law judge hearing was in OCT? normally you get 2 wk. notice.
have you REVIEWED YOUR FILE yet? is it on CD/DVD? i understand they will give you a copy of it! THAT'S A MUST TO HAVE TO MAKE SURE THE IMPORTANT THINGS YOU SENT ARE IN FILE,
and you can view DDS' drs. reports so you can preparee your defense against their statements!
many of us lymies are on SSDI! some were lucky and got it in the 1st step, 1st try; me; 5 years of hell to get it on 2nd ssdi app.
[ 03. September 2007, 12:40 AM: Message edited by: bettyg ]
Posted by Aniek (Member # 5374) on :
Lucy,
More and more LLMDs are incorporating alternative medicine into their practice. There are many reasons for this. One is that the Lyme and the antibiotics both stress the system, and you need to build the immune system and the body back up during treatment.
There are also some alternative methods to treating Lyme, using antibacterial herbs instead of pharmaceuticals, or along with pharmaceuticals.
If you want to use antibiotics, which is the decision I made, then find an LLMD who believes in antibiotics. But I wouldn't close my eyes to the use of vitamins and other supplements in conjunction with the antibiotics.
Lyme stresses the autonomic nervous system which can lead to all kinds of nutritional deficiences and problems with the adrenal glands and other body systems. Supplements can help counteract this, so your system is strong enough to handle the Lyme treatment.
You should also be getting copies of all of your blood test results. Whenever you have an appointment, ask to get copies of all your test results. That way you have your own record, and you can look up anything on the internet that wasn't explained fully.
Posted by lucecaboose (Member # 13058) on :
bettyg - (1) i have a lawyer, he is awful but he was all i could get at the time. i tried to get someone else but he would not take me since i already had someone (2) my file becomes available for review next week. i am going to review it. i also have a list of what they have (now i know why i was denied the first time - the files from my two primary doctors were not listed among the files they have. they must not have accepted them because i brought those in by hand, instead of the doctors sending them in. they must have just thrown them out. (3) it is in october. how did you develop a strategy based on your file if you were only given two weeks notice? did they let you read your file before the two weeks or was that part of the notice? i don't understand. but you also wrote that you got it the first time. what was the two weeks notice for? my lawyer has not attempted to gather files from other doctors yet. I gave him a list and I have to make a bunch of copies for him of new evidence.
Aniek, i'm sorry that I didn't explain better. I totally believe in supplements. I've been taking supplements since the mid 80s. I'm educated on supplements and on what to take. I am taking more than ever now. it's not the supplements that I have issues with. It's holding metal weights in each hand and based on that, being told that I have this and that wrong with me, and to take this and that supplement because it is compatible with me, and being charged a lot of money for it. i just wondered what others thought of MSA, applied kinesiology and things like that. Thank you very much for your information to me.
lucy
[ 03. September 2007, 09:35 PM: Message edited by: lucecaboose ]
Posted by Aniek (Member # 5374) on :
Lucy,
There have been some pretty detailed discussions here on muscle testing. You can use the search function to find them.
I personally had a very poor experience with applied kinesiology and don't believe in it. But there are other people who won't take any medicine or supplement without testing it first. One thing I would bet on though, if you don't believe in it, it won't work for you.
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