Hi both- I am so relieved. I was diagnosed with Lyme by a LLMD yesterday. I have not actually had a positive Lyme blood test yet. He has me going to a Quest lab to get that done along with the co-infections. Dr. Burrascano's Guidelines to diagnosis and treatment of Lyme really was a turning point for me. After the 2nd MS specialist told me my symptoms looked most like MS but since I had a clean MRI- It must be in my head- I looked back into Lyme.
There were a couple of things to hint me in this direction.
My symptoms started a month after I stopped taking an antibiotic for acne. I had been taking it for 9 years.
Some of my base symptoms never let up- they just kept getting worse. I thought if it WAS MS, it was primary progressive cause I never had a relapse in almost a year- it felt more like I was being increasingly poisoned.
I had been keeping track of my symptoms on a graph - 1-10 how I felt each week. I noticed that I seemd to have plateaus for 4-5 weeks and then I would increase in my disability and plateau again. This is a Lyme characteristic.
In all, after looking at the symptom list above, I got in touch with an acquaintance who had Lyme and she directed me to a LLMD in my area. I faxed him all my negative tests (including Lyme titre and western blot) that said I was perfectly healthy and a list of my symptoms and he set up an appt. Actually, my Lyme Titre was a 'maybe' but when they did the western blot, it was negative. Not an acceptable lab though. After a 6 week wait I had my appt yesterday. Went through the normal neuro tests and record and MRI review with an assistant who conferred with Doc and Doc came in and told me "If you don't have Lyme, you have something very close to it that has not been discovered yet." He said he had no doubt that I had lyme. The symptoms, the Maybe titre, the fact that they started after I stopped Antibiotics all pointed unequivocally to Lyme. In fact, he said that even if the next Lyme test came back negative, he would still think that it was a flase negative or I must have something unknown so close to it that the treatment should be started.
I was so relieved. I had always been frustrated that none of my docs seemed to think that the timing with the antibiotic thing was significant. It seemed significant to me. This disease is so misunderstood by the medical community. It is criminal!
So, I hope my story can help you find the answers you are looking for. Looking back, I wish I had followed my gut about Lyme rather than letting the docs lead me in a futile search for MS. But I had no idea that the docs are so un-informed about this disease. My GP had said- your symptoms are too significant to have a false negative test. Now I know- not only from my doc but also from web research and from this lyme board- NOT SO!
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Ticker- thanks for your help. I do not have TOTAL faith in my LLMD. (Dr. Donta) You warned me he does not treat co-infections. If the Quest lab is negative I am going to ask for Igenex. Maybe I should anyways just to make sure I have the right co-infections listed. I figured I would start with this doctor and then get a second LLMD opinion on the treatment using the labs I get. I am not sarting treatment until later in August. I have a heavy load at work and I cannot risk the Herxes. With planning, I can lighten my load and put contingencies in place in case I get sick. I have been dealing with this for a year so a few more weeks will not kill me.
I am starting with 400 mg/day Plaquenil (SP?) and 1000mg/day Biaxin.
My understanding is that it could take a year for me to see improvement. True? Also, Dr. Donta told me not to take vitamins (I do not anyways, I hate pills) but I know it is a controversial subject and was wondering about your thoughts on it.
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Hi Deb. I do recommend getting tested through IgeneX. I always sound fanatical about the co-infections because I have had four myself. If I would not have been tested for them, I would not be here now.
Many Lyme doctors believe they need to be treated first for Lyme treatment to be effective. This was true in my case.
Biaxin and Plaquenil can be effective. Long-term treatment is not unusual especially if you have been sick for some time.
I defintely do not agree that you should not take vitamins. Vitamins help strenghthen the immune system, which is important. Vitamins are found in healthy food also, and it is important to eat healthy. He is the only doctor I know of who believes that vitamins feed the bacteria. Of course he is entitled to his belief, but other Lyme doctors recommend taking vitamins. I take vitamins, supplements, and herbs that are effective in strengthening the immune system and/or are effective for Lyme.
I am sorry you have a heavy workload too. It sounds like you are thinking ahead though by planning your treatment when things will not be so difficult.
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Zandaroot~ I am so happy for you!
Do you ever remember being bitten by a tick? What were/are your symptoms if you don't mind. I have a LLMD appointment coming up, I wish to get some answers soon! If you don't mind, how old are you? I also had a neg mri and symptoms not typical to ms, so was told nothing is wrong! Here I am, 7 months later with symptoms!
Some neuro's are a waste of time and money (in my opinion)
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Deb, I'm so happy to hear that you're getting to the bottom of this and hope you feel better soon! From everything I've read, as ticker said, IGeneX is the way to go, (and I think Lab Corp for CP although I'm sure others will comment if that's not the case).
Julia, I hope you get to the bottom of your own mystery soon! Did you ever go to Nikki's specialist? If so, I take it you weren't happy with the visit?
ticker, just wanted to give you a shout-out. I think you offer amazing and accurate help to people on this board. Even though at this point I'm more of just an interested party, I appreciate it too.
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
You're very welcome! I don't say this lightly -- I see a lot of incorrect information being given out on different boards and strong opinions posing as facts.
No, I haven't been yet but I have the kit here. I'm mentally fatigued and need a little break! My PCP would have been willing to draw blood for me but it was a Friday and after much discussion, he wants me to see another MS specialist and an infectious disease specialist. Since I have the MS dx and I'm aware that it DOES meet the clinical dx criteria, I don't see a reason to go to another MS specialist at the moment and although I know an ID doc doesn't take the place of an LLMD, I will work with my doctor and go that route first. He's been willing to work with and humor me so it's the least I can do and it won't hurt. But anyway, I just need a little break. I'm not taking MS meds so there's no danger there in case it is Lyme. I'll probably make the call for the appointment next week. It may be an interesting appointment, anyway, if only to get another perspective on MS since there are a lot of folks who believe that disease may be bacterial in nature (at least in some cases) and as I'm sure you know, some people are treating their MS with antibiotics. (Some the same as the ones I see on this board!)
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Hi 3Love. Here is my story:
I am 43. (Yes, I seriously considered menopause) My problems started last May with floater sparks in my left eye. Then my right big toe got numb in July and my right pinky finger in early Sept. In late Sept the numbness spread considerably and by Oct 13, everything was numb head to toe except for my front torso. When the numbness went into my face and head, I also got pressure in my ears and head that never went away. From Oct 13 to now, I have been numb and had the pressure. I also developed blurry vision at the same time.
Over the winter months I started experiencing
off balance
Night sweats
metallic or salty taste in my mouth
urinary incontinence and unable to empty
tight banding around my waist occasionally
severe burning and weakness in my body. Started at night only but then 24x7. It felt like when you over-exercise and your body burns and is weak.
I had two instances where I was so weak I could not walk for about 4 hours
My body is conducting vibration
I have trouble concentrating and multitasking
I lose or substitute words a lot and have slurred speech sometimes
I am oversensitive to alcohol and heat
I get chills
I get crawling sensations on my skin and sometimes like red ants are biting me
In early June I started getting joint pain. Started in neck and jaw then knees, wrists, ankles, toes.
The bottoms of my feet are painful a lot
I often have a sore throat and have experienced my throat 'closing' on me
I recently began coughing for no reason. I drive my husband crazy at night.
I have always been extremely active but I stopped being able to swim laps in January. My energy runs out really fast and suddenly. I have trouble climbing stairs or walking any distance.
I am not aware of a tick bite and never had a rash. I do not have a low grade fever and do not have extreme fatigue where I feel like I want to just be in bed. Because I was on Minocycline so long, it is unknown how long I night have had this disease. I know it has been at least a year.
Hope that can help you. If you have any more questions, please do not hesitate to ask. I have been accused of over-sharing!
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
zand~ thanks for sharing. I have to say alot of your symptoms are like mine.
I had so many things going on at the same time that I thought what the heck is going on with me. Very scary. Like I said before I didn't have anything really alarming (had knee pain, felt like my knee cap was flicking around, stomache pains, rib etc) nothing really took me down except 7 months ago when all of a sudden one day I got terrible diahrea (but it was just water flushing out of my body thru my rear) as if some kind of poison was in my intestines. After 24 hours of that I had constipation alternating with diahrea.
Then one day I had a panic attack (never had this before) as if I was ready to lose my mind! And it all started from there. I still have this weird numb-like feeling around my nose area for 7 months now! Constant!
I have too many symptoms to list, the worst being the brain fog!
Bearygood~ I really don't want to go there (neuro appointment) because I have NOTHING good to say, so I will keep my mouth closed! Let's just say it was a total WASTE!!!!!! But thanks for asking
Anyway, my LLMD appointment is coming up in 2 wks yay!
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Deb - I just want to say congratulations and good luck with your treatment! I have read your posts from the MS board and followed a little of your story since I joined. It gives me hope for all of us here in limbo land that you found your answer and are on the road to healthier days ahead! Kudos to you for not giving up.
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
3Love- wow- I hope your LLMD appt goes as well as mine did. I said to the doctor that after a year of hassle, I could not believe it was so easy. What was so horribly bewildering to others was completely obvious to him. Good luck- let us know how it goes.
Jill- thanks for your words. I pray you get the answers YOU are looking for- Don't give up! Maybe I'll just post my story once in a while on the MS board to encourage others to keep looking and do not close your mind to other options because your Docs are. So many of us go right down the path of MS specialist and then I think between us and our docs we get tunnel vision. I really feel like I wasted about 8 months while this thing just got worse and worse. As long as your insurance will cover it, why not go down a few paths at once?
I am re-thinking my decision to wait on the meds. I had a pretty horrible night last night. I have to go to work today and see what can be done so I won't cause a lot of problems while I adjust to treatment.
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Zand~ I sure will let you know! I asked you this question on another thread but just in case you don't read it, here it goes again.....
Who is your LLMD and where is she/he located? If you don't mind that is
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Hi Julia- My LLMD is Dr Sam Donta at Boston medical center. I have a lot of good press about him but also a few concerns. Being in NJ, I am sure there are lots of LLMDs closer to you. The good thing is that he takes insurance- if you cannot find anyone who does, I guess it would be worth the Accela to get up here!
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Wow! He takes insurance? That is a shocker, I have called so many LLMD's and noone seems to take insurance. Not to mention, very expensive. But, when it comes to your health nothing is to much $.....
Boston is a bit out of my way, so I think I'll suck it up and pay the extra cash
I was wondering what the few concerns about him you have?
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Julia- I have heard he has a 'one size fits all' method of treatment vs. treating each of the co-infections differently. I have not experienced this yet so I would not want to judge him on hearsay.
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Deb, thank you for continuing to visit the MS board. From everything I've seen here and other places, I honestly believe there are people out there with Lyme who are being treated for MS. Very scary, especially if you're taking CRABs -- I've heard that is a very bad thing if you have Lyme.
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Bearygood- thanks for that! I was wondering if I was barging in where people felt it was not appropriate. But I really feel there is a link here and I do not want others to get sicker as they wait for a MS dx like I did.
Dr Steven Phillips has done a lot of work on the connection between Lyme and MS- have you seen his work?
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
hey zandvoort, a few questions for you. I go to a veterans hospital. While I was searching the internet for llmd's I found Dr. sam donta. he lists boston medical center and Boston veterans hospital. I called his office and reached a recording. On the recording they said send test results. Did you start to see him before you had any positive lyme tests? You don't have any reason to know this, but any idea if he still sees patients at the VA in Boston? Can you give details of your visit. Did you already have test results? Did he go from your symptoms? Did he run an elisa screen? Did he run other test and through what lab? Any info would be great. Thanks!
p.s. did you have to leave a message and did they call you back quickly?
Re: for Bearygood and 3Love- Its not MS! Its Lyme!
Yes, I haven't reviewed it extensively but I've read some things. One of the people who encouraged me to read more about Lyme uses him. Her husband has been treating his MS with antibiotics -- and seeing improvement!
Deb, I really do think it's great to have you there speaking out! MS is such a catch-all and it is easy to stay ignorant when someone can explain away your symptoms by dxing you with that mysterious condition -- especially when a Western Blot or ELISA comes back negative!
Quote:
Originally Posted by zandvoort
Bearygood- thanks for that! I was wondering if I was barging in where people felt it was not appropriate. But I really feel there is a link here and I do not want others to get sicker as they wait for a MS dx like I did.
Dr Steven Phillips has done a lot of work on the connection between Lyme and MS- have you seen his work?
I was diagnosed with Lyme by a LLMD yesterday. 
I have not actually had a positive Lyme blood test yet. He has me going to a Quest lab to get that done along with the co-infections. Dr. Burrascano's Guidelines to diagnosis and treatment of Lyme really was a turning point for me. After the 2nd MS specialist told me my symptoms looked most like MS but since I had a clean MRI- It must be in my head- I looked back into Lyme. 
My PCP would have been willing to draw blood for me but it was a Friday and after much discussion, he wants me to see another MS specialist and an infectious disease specialist. Since I have the MS dx and I'm aware that it DOES meet the clinical dx criteria, I don't see a reason to go to another MS specialist at the moment and although I know an ID doc doesn't take the place of an LLMD, I will work with my doctor and go that route first. He's been willing to work with and humor me so it's the least I can do and it won't hurt. 
But anyway, I just need a little break. I'm not taking MS meds so there's no danger there in case it is Lyme. I'll probably make the call for the appointment next week. It may be an interesting appointment, anyway, if only to get another perspective on MS since there are a lot of folks who believe that disease may be bacterial in nature (at least in some cases) and as I'm sure you know, some people are treating their MS with antibiotics. (Some the same as the ones I see on this board!)
But thanks for asking
