What would you do... so do i have lyme disease or not?
I recently had spinal tap done and the neuro checked for many things and lyme disease was one of them well the test came back negative for lyme... well a few weeks ago I went back to my pcp, after talking to a few friends here at the forum... and we checked for west nile, lyme and alot of stuff, and I called the office today, and my lyme test was elevated but not enough to cause my symptoms, so they say........ they used an ABV testing ( it came back positive) but not high enough to cause my crazy symptoms..... left me refresh you of my symptoms:
1. Hemisory loss
4. facial numbness/paralysis
5. tremors/ shakes ( maybe arm or hand or leg or teeth chatter)
6. extreme muscle weakness/ paralysis ( i call them episodes or excerbations the intial onset last about 5min - 1hour where i'm in a quadreplegic state completely muscles withdrawn and knotted up, hands also. then they eventually striahtghten out some, and it normally takes me about 2-4 days before i can just use my cane, and get off the walker)
7. at night i have the leg cramps and the sensations in my legs and thighs just burning and tingling ( thank god for ambien and trazadon to help me sleep at night)
8. my thinking skills are getting worse, I just stop in the middle of sentences because i just forget what the hell I was going to say ( i hate emailing people it takes to long to say something, and I was sharper than this)
9. I went to the Rheum. last week he told me it wasn't RA, it was all neuro, and just to keep him on standby for prn.
10. i went to the uriologist last week also to have a uriodynamic done, because of my incontience problem.
I'm starting to get tired, I just filed for my long term disability... been home for over 3 month now, and i have to preach this mother's Day sermon on Sunday, and I don't even know if I'll be able to stand up that long or better yet read my Bible. I'm a minister for those of you that didn't know... i feel the pressure, and it's really starting to get to me. i'm not cut out to be a house wife, and being sick definetly wasn't my plan for 2008 .. i was going from good to great in 2008... let's u know how much we really control in this live of ours.
I do not know this for a fact, but I have heard repeatedly that Lyme is very difficult to detect in the spinal fluid. If I had the problems you have and had any test that was positive for Lyme, I would be treated for Lyme disease! There is no doubt in my mind. You might seek out the advice of an Infectious Disease specialist, though we have a member (who I hope speaks up) who was told by an ID specialist there in Oklahoma that. "There is no Lyme in OK." Rubbish!
Several weeks of antibiotics will tell you a lot about whether this is the problem. Lyme disease can look a great deal like MS. IF the problems are still there, then you look farther.
We have several members taking antibiotics for Lyme when they first suspected MS. Also, any person with MS can certainly be exposed to and be infected by the Lyme spirochete. MS does not protect you from it.
Maybe Speechgeek will step in here, because I know she's been on antiboitics for some time and is feeling much better.
I'm sorry you are going through a rough time my friend. Please know that my thoughts and prayers are with you. I would agree with Quix. You may need to speak to infectious diease specialist. Hang in there girl!! God will give you the strength you need to preach your sermon on Mothers Day!
I to would get on antibiotics. They aren't going to hurt you if it's not Lyme, but a few weeks, if you are getting better, would make it positive. Heaps of blessings to you this Mother's day, I am a reader, and am scheduled this Sunday also. Makes the day extra special when you participate so fully in the services. Prayers to you, will be thinking of you on Sunday! Maggie
I just called my ID Spec. and they told me that lyme disease is not likely here in okla. more in the east part, but she said that they would check my lab work and my IGG and IGM level one would tell them if i had the disease and the other if i had been exposed to lyme or the antibodies, but she sd doxycycline is normally given to treat lyme disease.
Actually, it was my Neuro that said there was no lyme it Oklahoma-lol....The ID specialist said that it was "controversial" to treat neurological lyme because it is "controversial" as to whether it even exists in Oklahoma.
Did you have a Western Blot test for lyme? I would try to get those results to see which positive antibodies that you have...each one represents a different section of the bacteria and some are more specific for the lyme bacteria (borrelia burgdorferi) than others. You have to have so many positive "bands" of certain antibodies to be considered CDC "positive".
I was shocked at the response that I got from the Doctors here about Lyme....you would have thought I said that I had malaria or some rare prion disease. I live in the central part of the state and am planning to go to Missouri to get treated for Lyme because no one here believes that I could possible have Lyme. If you find a doctor in the state that will treat you, please let me know!!
I did start on antibiotics for a couple weeks and actually stopped having so many terrible headaches that have plagued me since October. A lot of my numbness had left too. I stopped taking them so that I could have an LP done--and started having problems again. I have also heard that it is difficult to find the lyme bacteria in the CSF. They can do a PCR test which looks for the DNA of the bacteria or a blot which looks for the antibodies to the bacteria. My neuro did say he would look for lyme..although he doesn't think that I have it..even with a CDC positive western blot.
I am still a neubie at all the lyme info, so anyone more knowledgable feel free to add/correct. flash.lymenet.org has some good info. You could ask your doctor that ran the lyme test for a trial of Doxycyline to see if that might give you some improvement. My GP did give me a months worth even though he probably didn't want to, I just phrased it like this "could you start me on doxy until I can find another doctor to treat me for lyme?" I know better than to ask for a refill--LOL!
We just covered Lymes in class. Do you have any joint pain? Especially in your knees or back? Quix is totally right about getting treated just in case. It's a course of antibiotics and if it is Lymes it can be fixed! You should request that your PCP treat you. If he hesitates, tell him you really WANT HIM AND NEED HIM to treat you for lymes. If it doesn't work, no harm no foul. I'd push for treatment. I was told theres no Lymes in Idaho yet my neighbor (a native of ID) was tested positive for it and he had to go to the Mayo Clinic to get diagnosed. He finally got treated and is better now and is back to normal as well as back to work.
As far as preaching on Sunday, I will be praying for you hunny. You know better than most that God doesn't allow us to go through these storms alone. Like the disciples in the boat amoungst a terrible storm, Jesus is in our boat! We tend to look at the storm and the rising waves crashing in on us. We forget that God himself is resting near to us. We just need to turn our eyes from the storm and gaze upon his glorious face. All of creation came to be by his voice alone "let there be..." As we close our eyes and see his beauty may we rest in his peace and love and hold onto his words. "Peace be Still" Sister, you are a child of God. A servant. What does a servant do? A servant rests in the hand of the Savior. She moves, speaks and functions in only that which the Father has instructed so, "Peace be Still and Know that I am God." He is in your boat Vessel, You are in his hand. He will speak to the storm and carry you to shore. It's going to be ok.
There are no words to describe the journey that I have been on and the frustration of this disease. I will tell you that I lost the ability to walk and stand, write, type etc. burning in my legs, arms, face, Muscle fasiculations, jerking and twitching. Vertigo, dizzy, blurred vision, balance problems, deep muscle pain. Girl the list goes on….I was looking at short term disability and thought I would be wheelchair bound at this point.
I was told I may have ALS or MS. I am not familiar with the test you had. Quix is correct in that LP have a very low detection rate for the Lyme bacteria. My mother also has positive Lyme had a negative lumbar puncture. The Elisa also has a high false negative rate. The down and dirty on the Western blot (the preferred test) is there are 2 parts Igg (CDC and infectious disease want you to have 5 out of 10 bands) and the Igm (they want 2 out of 3 bands). Lyme docs say it doesn’t matter HOW MANY bands just which bands are positive and is it specific for Lyme antibodies. Western blot is often negative as well.
With that said when I asked infectious disease if my western blot was positive he said… no it is negative. When I asked did I have any bands come back positive he said …yes band 23 on the Igm. That band is specific for Lyme and I am considered positive by Lyme doctors. The following statement was on the Lyme lab work from my infectious doctor that I never would have seen except I asked to take it to Hopkins with me:
B. Burgdorferi is the causative agent for Lyme disease. CDC criteria for a Positive B. burgdorferi IGM western blot require the presence of antibody to at least 2 out of 3 specific borrelial prteins (23kd, 39 kd, 41, kd). Although a negative result, THE PRESENCE OF ONE IGM BAND MAY OCCUR WITH RECENT EXPOSURE TO BORRELIA BURGODFERI AND MAY WARRENT FURTHER SEROLOGICA TESTING IF CLINICALLY INDICATED.
I think I am clinically indicated.
I started on 1500 mg of oral amoxicillin per day in January within 2 weeks I had significant improvement. I was increased to 3,000 mg at the end of March. I got really sick for 2 weeks and then I bounced back. I can work a full day and I can be a mom to my kids and take care of my home. I never thought I would garden again. I have been in my yard several times this spring. I had 6 consecutive days symptom free at the end of April. You need to read everything I will put 2 web sites at the end of this post. If med help blocks them let me know and I will send it to you PM.
This is a very controversial diagnosis. Most people doubt its existence and argue over treatment recommendation. There was a huge court case on 5/1/08 that resulted in infectious disease to review their guidelines…the very guidelines that dictate treatment.
The Lyme Solution is an excellent book that you might want to read.
I am sorry for the rambling this is a very emotional subject for me. Get treated and read everything!!
When we talk about false negatives for the ELISA, I am sure that is confusing. I suspect that the test you had, that was positive, is a type of test called an ELISA, and your test was postive (in the blood). The ELISA has a low rate of "False - Positive", so I would be inclined to believe it over the negative spinal fluid. Rebeccah and I are saying the same thing.
Chronic lyme is controversial in every state in the country -- best I can tell. Lyme disease has been reported in all states -- except montana and alaska -- not sure. But the distinction is chronic lyme.
I'm sorry to say it's controversial. There's no harm in experimenting -- if you can find the doc to help.
Im 22 yrs old in the service, currently undiagnosed and some of my symptoms are constant and others are new and more appear at different times some come and go. Such as muscle twitching for example. I now have had inflammation in the white areas of my eyes for the past month with "no known cause of why" they are just inflammed. Im not going to go into detail of all my problems since ive posted around on this site a few different spots.
Lymes is definitely a hard one to chase after I am finding this out the hard way. If you sit there and read all the symptoms and can answer yes to a majority of them like myself. Then YES its something to consider, its your health and your money. Get tested. Dont automatically assume its Lymes but dont take no for an answer just because your primary doc says well "you havent been in the areas where Lymes ticks are found, which they believe is ONLY the northeastern states."
On that note, there is no definite test for Lymes but tests that "are shown in Lyme patients" at least this is what Im being told by doctors.
I went ahead and payed out of pocket myself to get an opinion from a Lymes specialist my insurance wont cover (we wont go into that)
My specialist said "your symptoms are consistent with Lymes and 2 co-infections you can get with Lymes called Bartonella and Babesia." He also believes I am at the "chronic Lymes" stage because of the length the symptoms have gone untreated.
So to back his clinical diagnosis the testing he always uses is done by:
IgeneX - IgG IgM Western Blot for Lyme Antibodies
Fry Laboratories - Bartonella Microscopy
Labcorp - CD57 Sticker Panel
This was in my case. I NEVER remember a tick bite and ive NEVER been to the any of the Northeast states. Just mid california, southern oregon, Arizona, and Northwest Washington. Never remembering Ive been bitten by a tick somehow I have antibodies for the Lymes bacteria in my blood that showed positive and indeterminate which is basically saying "there was antibodies present but not enough to be positive". I hit all the in the "double starred bands". Came out positive for Igenex standards but not CDC standards. Since my specialist already considered me "chronic" this was expected, hard to detect. So Ive been on 2 different antibiotics now finishing up my 2nd week and Im feeling better than I was and havent been to the hospital for any of my cardiac and neurologic episodes I would have anymore.
So is he right about it being Lymes? Honestly I dont know. But what he is doing has been the biggest improvement ive had in 3 years. So I dont care at this point I will continue antibiotics and testing until proven otherwise because its working.
Remember its your health and you dont hear of many people dying of Lymes. Sometimes co infections you can get from Lymes are more dangerous than Lymes itself so becareful and if you firmly believe it get tested. I would recommend Igenex for sure.
Oh yes, also note that my Bartonella lab did show bacteria attaching to my blood. My CD57 lab was under 200. Neutrophils (white blood cells) low and Lymphs were HIGH.
So yes it appears my body is fighting something.. something thats not showing on the labs my hospital has done. MOST people can tell when something isnt right with their body. Listen to your body, if it doesnt feel right at all get it checked!
If you chase after Lymes expect it to be a hard road. Do your own research as well and ask questions. You almost have to become your own doctor in this area but listen what your docs have to say, their goal is to get you better. Get them to challenge Lymes and rule it back out, if they can.
Its your health, how important is it to you?
for those of you whod like to see those labs I was referring to I have them in my albums. If you have any input or experience with them Im open for opinions
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