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I think I was just diagnosed? I'm a little confused.

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Posted 9/20/2010 8:27 PM (GMT 0)
Hey, I'm Melissa and I'm new here.

I went hiking in the Boston early August and a couple weeks later noticed an itchy rash that eventually developed a bruise in the center. I went to a few clinics, they thought it was just some bad bite, bladdah bladdah blah. They gave me cephalexin and sent me on my merry way.

The rash came back later with some aches, fatigue, and a sore throat, I went to someone else, and they suggested Lyme disease. They ordered ELISA and a Western Blot for me, decided to treat me without getting the results since it wasn't expensive and wouldn't hurt me. I was prescribed doxycycline.

So here's the deal. I called to check on my lab results, and they said that in the ELISA came back saying I was positive for IgM, not IgG. The levels I had were consistent with me getting Lyme went I'd been in Boston. When the Western Blot came in, they said that I needed 5 of the Lyme bands. I only had 3.

The doctor said it probably does not matter, that it pretty much has to be Lyme. He's going to call me back later. The thing is I'm currently in an area where Lyme disease is pretty rare, so
I think he's looking into things a little. Do you guys think that is true? With a positive ELISA, is 3 bands enough on the Western Blot?
Posted 9/20/2010 10:21 PM (GMT 0)
Hi Melissa,

Yes, if you go by IGeneX standards, 3 bands can be enough....do you know which bands were positive? In the Lyme community it's pretty well accepted that the CDC criteria of 5 specific bands is wrong and should not be used to diagnose Lyme. Your doctor sounds like a good one!

The thing I would like to caution you about is that 21 days of doxycycline is frequently prescribed for Lyme, and most doctors think that's all there is to it. WRONG! Unfortunately, unless you were treated almost immediately after being bitten, you will probably need more than one course of a single antibiotic. sad

And as to Lyme being rare ANYWHERE in the United States, it's the number one tick-borne disease in North America and is rapidly becoming a very serious problem. Lyme-carrying ticks have been found in all but one state, I believe...?

Good luck with everything! I'm so glad you found this forum....everyone here is very supportive and helpful!

Take care,
JoAnn
Posted 9/20/2010 10:22 PM (GMT 0)
Hi Melissa you have come to right place for advice, the members here are very knowlegable regarding LD. Unfortunately I'm not, or should I say not enough to interpret your blood results, but I would suggest that a positive ELISA warrents you finding an LLMD asap. The longer you leave this disease to establish its wicked self the more likely you may find yourself regreting your haste. Untreated or under-treated LD could take months if not years to resurface and once it becomes chronic it is VERY difficult to eradicate - oh, I forgot to mention it also wrecks your life, physically and emotionally.

You've seen the tick, you've had a rash (?) with some Lymie symptoms and a + ELISA......... please don't mess with this disease, go find yourself an LLMD before you regret it.

Good luck......Mik
Posted 9/20/2010 11:20 PM (GMT 0)
Hi Melissa!!!
Welcome to our forum!! I a really sorry that you have a need to be here, but I"m sure glad that you found us!!! I'm sure you will find us to be a caring, helpful & understanding group!! about the best thing you can do to help yourself get the treatment you need & deserve is to become your own health advocate. Get copies of all tests performed, as many docs don't even know how to read them!! Out of necessity, a lot of us here have learned how to read a lot of test results & we can help you as well, should you need help.

The next big thing is to read, read, read!!! Start by reading the post at the top of the forum titled "New to Lyme?...Start here." It's full of a lot of info that we felt would best help those who have only just found us.

Actually, the CDC does not required ANY bands to be positive!!! The CDC says that it needs to be a clinical diagnosis - diagnosed by symptoms - which is what a decent LLMD would do. The Elisa & WB were intended to be for tracking the progress of this insidious disease across the states. Try googling CDC, Lyme Disease. Some one testing positive to only a few bands & docs claiming that's not enough would be equal to telling a new mother that since she isn't 'showing' that she may not be pregnant.

It sounds like you have got a good doc though - is he your GP? As the others have already said the wisest thing would be to get in to see a LLMD.
You made the comment that you went 'hiking in the Boston' - would that be Boston the city or the Boston Mountains? I live in Arkansas & we have a mountain range (well what passes as mountains here) called the Boston Mountains. Either way, there is no part of the US that can say any longer that it is rare to see Lyme.

I hope this helps some.
May you find peace along your journey to health...
Trav
Posted 9/21/2010 3:38 AM (GMT 0)
JoAnn - it's been in all 50 states since 1997...I think the last state to find it was Hawaii. I would consider Boston to be a high-risk area.
Posted 9/22/2010 3:03 AM (GMT 0)
Thank you so much for responding. I'm glad to have some support. Answering a few questions and bullet pointing a few other things:

-The doctor I saw is not my GP. I don't exactly have a set one at the moment because I'm more or less in college and have been maybe a little lazy... the doctor I saw was at the college's health clinic. He was an MD, though, not just a NP.

-I started on my antibiotics almost exactly 1 month after I must have been bitten, but no, I never saw the tick.

-I've been prescribed 3 weeks worth of doxycycline, taking 100mg twice a day.... I don't know if any of you guys feel like that's enough or not.

-Yes, I went hiking in the Boston, MA area, not the Boston Mountains.

-I don't remember which bands in my Western Blot were positive. The office was closed when I called but I'm calling in the morning to ask which bands they were.


Also, you guys have said that unless I was treated pretty quickly I will probably need more extensive treatment... what would count? Do you think a month is too late? I'm not trying to be doubt you guys, I really appreciate your help, but I guess I might be afraid to admit I really have something more serious than I thought--I thought this would all be gone after a few weeks of the doxycycline. I know that most of the people on this site were probably unfortunate enough to have a case that wasn't as easy to treat, but does that mean that as early as a month after being exposed I could have had my case get to the point where I need extensive treatment? Do I really need to have some sort of consultation with an LLMD? I'm feeling a little lost on if that is really what I should be doing.
Posted 9/22/2010 3:58 AM (GMT 0)
3 weeks is not enough in my oppinion. Some hospitals here in PA recommand 4-6 weeks. Lyme leaves in cycles. If you have a few left and the 3 weeks abx don't kill it all, it will regenerate. If you have a strong immune system, you may not feel it for several years, until it becomes over loaded again. If you leave a healthy life--no sugar, no white flower, etc, you may be able to beat it, by why take a chance? I believe I got infected 8 yrs ago when I was in college with Lyme and Bartonella. 3 weeks of abx. felt fine (who pays attention to a symptom here and there, if they are few and far apart)? I was diagnosed with lyme last year. 3 weeks of abx. 2 mo later, I pretty much started the "who pays attention to a symptom here and there, if they are few and far apart" until one day, I woke up, I could not walk, my hands and legs were numb, tingling, etc Please do take it seriously and get more abx. Tell your doc your symptoms did not go away and show him Burrascano's guide lines for treating lyme. You can find it in "new to lyme--start here" (the first topic on our forum)

I now have 3 children and afraid that they may be infected, esp the baby bec I got pregnant with her after my tests came +.
WHY take the chance? Many of us would do anything to trade places with you! READ AS MUCH AS YOU CAN and decide for yourself! btw, ticks carry other diseases as well--not just lyme.  Ticks leave in dirt--it is brainless to ASSUME they only carry one disease, when if fact SOME carry several others.  Most docs only test for lyme, which is a mistake. Your abx won't kill coninfections, if you got those as well. My LLMD believes I have Bartonella and lyme. You have the whole life in front of you, take care of this asap!  My guess is I got Lyme+Bartonella 8 yrs ago.  3 weeks of cipro ALMOST killed the Bartonella.  My body has been able to deal with the lyme until last year, when Bartonella symptoms and Lyme symptoms have returned and increased in legth of time.  I was in a car accident while pregnant with Bart and Lyme and my immune system was put over the edge...

Good luck!

Post Edited (Simela) : 9/21/2010 10:10:55 PM (GMT-6)

Posted 9/22/2010 5:39 PM (GMT 0)
Wow, that's horrible. I'm so sorry that happened to you. I think you're right, if there is any chance that maybe the bacteria won't go completely away it would be pretty stupid of me not to do what I can. Thank you for sharing your story.

I got my Western Blot results back... I was positive for 23, 41, and 45.
Posted 9/22/2010 6:06 PM (GMT 0)
You are welcome, iik8r. I was once young and thought I was immortal and didn't take every little symptom seriously.  Now I do.
Was it your IGm or your IGg with these bands +? That is very important. Most of my tests were only IGm band 23 and 41 positive. I once had one band IGg+ and the IGM was also +. The Elisa was also high and + (2 different times).  You are very lucky to be here, I wasn't treated until a couple of months ago, I did not do any reading and trusted my GP that my tests were false +.  He was wrong, he did not know how to read the tests.  He did not treat me for lyme while pregnant last year.  I just  started abx 6 weeks ago.

Post Edited (Simela) : 9/22/2010 12:23:52 PM (GMT-6)

Posted 9/22/2010 7:45 PM (GMT 0)
Hi there Melissa, three weeks after being bitten I developed an EM rash.....I had no other sympoms. My GP (he is not an LLMD) gave me three months of Doxy at 100mg two times a day, this is what I had read you needed from the internet (I was obviously wrong). Seven months later my life and body started to fall to pieces. After taking 3 months of ABX I too thought no bacteria could survive that, so LD never entered my head again. I suffered for over a year before the penny dropped and I began to pursue the LD theory again.

Now I take very large doses of ABX along with lots of suppliments and have to stick to a tight diet, which I now have been on for 14 months, and although I'm getting better I'm still suffering. Three weeks of Doxy at 100mg two times a day, in my humble opinion and experience, is nowhere near enough - you may just surpress the inevitable for a short while; if you do have LD.

Borrelia, apparently, can be anywhere in your body within 12 hours of infection including the CNS, it also multiplies ever four weeks so between you getting bitten and receiving treatment you could have two generations of bugs all finding places to hide.

Simela is absolutely right to urge you to take proper care of this ASAP.

Take care Mik.
Posted 9/22/2010 9:05 PM (GMT 0)
Mik,
Its unbelievable that 3 mo of abx was not enough if you catch it so early! What abx do you take now and what is the dosage? I take Ceftin and Biaxin 2x day, @500 mg. I would have thought 3 mo was enough if cought within 3 weeks! I never got the rash, so it is impossible to pin point when I got infected--I am just considering the + tests and the symptoms.
Posted 9/22/2010 10:45 PM (GMT 0)
Hi Simela, after the first three months of Doxy I had around 8 months off ABX, and thought no more about LD. When my body and mind slowly started to "self destruct". Anyway (after the longest story) I was finally diagnosed with LD, both clinically and scientifically. My LLMD put me on a gluten, sugar, dairy, caffine and alcohol free diet along with countless suppliments - probiotics - milk thistle - folinic acid - chlorella - flaxseed powder - magnesium and vits d, b6, c with zinc, epa/dha fish oils and b complex (I rattle like all Lymies).

Sorry got slightly lost there.......Mm my ABX started with (from my GP) 2 months of Doxy 100mg 2x a day to tide me over before I visited my LLMD. On diagnosis she change these to....

These were taken together.

DOXYCYCLINE – 2 TABLETS TWICE A DAY (100mg/tab)
METRONIDAZOLE – 1 TABLET THREE TIMES A DAY (400mg/tab)

These were changed after 7 months to.......

AMOXICILLIN – 1 TABLET 3 TIMES A DAY (500mg/tab) (6 weeks)
AZITHROMYCIN – 1 TABLET A DAY (500mg/tab) (6 weeks)
TINIDAZOLE – 1 TABLET A DAY (500mg/tab) (6 weeks)

6 months later they were changed again....to......

ARTESUNATE (20mg/tab) – 1 x FOUR TIMES A DAY FOR 3 MONTHS.
AMOXICILLIIN (500mg/tab) – 1 X THREE TIMES A DAY FOR 4 OF 7 DAYS FOR THREE MONTHS.
CLARITHROMYCIN – (500mg/tab) 1 X TWICE A DAY FOR 4 OF 7 DAYS FOR THREE MONTHS.

I speak to my LLMD again within the next couple of weeks and maybe she'll change them again, to what who knows. I trust her totally as I believe she saved my life, I am now HealingWell (exuse the pun). If she changes them I'll let you know what she changes them to if you are interested.

I'm sorry if the names of these drugs are different in the USA than they are over here in the UK.

I hope this is what you wanted.

Mik.
Posted 9/23/2010 4:15 AM (GMT 0)
Oh, Mik, I didn't realize you are from UK. Actually, I don't think the names are different. I am on
Clarithromycin 500 mg 2x/day
and
Cefuroxime--this has several name brands--also 500 mg 2x/day

I just started about a week ago.

I was on Amoxacillin for 6 weeks from my GP, until I saw an LLMD and he is the one that gave me the 2 abx above. I see you are taking 3 at the time.

Please post again if your LLMD changes your abx. I am interested to see what she will change it to. Dr Burrascano believes Amoxacillin has a half life and becomes resistant to bacteria. He recommands to combine it with something, like Augmentin, which is resistant to bacteria. Maybe combining it with what you are taking is suppossed to do the same thing. Probably my doc will also add another antibiotic, I am not looking forward to it, I hate taking pills--I know they do good, but also bring all kinds of other damage!

Some people had luck with salt, vitamin C (or lemons), and also garlic. I have read this on their personal websites. I started to use a bit more sault and I use a lemon/day in my water. hopefully the Lymes don't like the Lemons LOL OR maybe I should just use limes instead!

Are you feeling any better? Have your symptoms decreased or did any of them dissapeared?
Posted 9/23/2010 7:48 PM (GMT 0)
Hi Simela, thanks for the diet tips - I really can't take salt, I don't like the taste at all but I eat lots of garlic so hopefully that might do me some good and I'll maybe try the lemons and limes - I can just imagine the little spirochetes with sour faces - it would serve them right.

Before I started ABX my worst symptom was the crazyness in my head, there were lots of other symptoms too - arthritic pains in my shoulders and hands, fatigue, bone and musle pain, stiff neck, tingling in the left side of head and neck which seemed to pulsate upto 50 times a day, shooting and stabbing pains, a heart that tries to escape though my rib cage and the occasional incredable pain under my rib cage on the left hand side etc etc.... All the symptoms used to be on and off or different ones on different days - you know the feeling. Anyway, I started ABX which cleared the madness within a month or so - I still have the odd bout of brain fog or confusion but it's 90% back to normal. The arthritis in my right hand is still a problem sometimes but my shoulders and left hand are now good. Some symptoms are still there but the pain is intermittant or the tingling is less.

Around 3 months ago things started to feel really good with only a few days a month where I had the debilitaing fatigue and bone ache that seemed to cycle every four weeks but over the last week or two the frequency of days where the fatigue flattens me has increased, whether it's the LD or a herx I'm not too sure. My body feels like I've been run over and my heart starts to pound to the point where I really wouldn't be interested if it stopped. At the height of these episodes (the highs last for about an hour) I cry like a baby for no apparent reason, then as quickly as it came on it goes off again, not the fatigue but the crying spells. Last week I was ill for around four days and thought that it would be another four weeks before my next episode, unfortunately today I have been rough - only for a couple of hours but I'm still disapointed that it was so soon. I've also developed a new symptom - I've always had a stiff neck on the right hand side and over about 6 weeks a really bad tingling pain from my neck through my shoulder and right the way down my right arm into my hand (like when you have pins and needles in your foot when you get out of bed in the morning and you can't put your foot on the floor) that come on between 3 and 15 times a day and renders my arm useless for about 30 seconds......a weird feeling.

Anyway I'll let you know if my LLMD changes anything. How are you, have you noticed any difference with the protocol you follow?

Mik.
Posted 9/24/2010 1:03 AM (GMT 0)
Mik:
Salt is available in tablets also, if you don't like the taste. Here is a receipie for garlic/salt/lemon (I used to make it for years without lemon, but now I add it to hopefully kill lyme):

I crush the garlic in garlic crusher and add salt (about 1/4 of teaspoon), add a little bit of olive oil (about 2 teaspoons--pure olive oil is good for us) at the time and keep mixing it in with a wooden spoon (not sure why, but it does not come right with a metal spoon), until I have a thick consistency--sort of looks like mayo. Then I squize a quarter of a lemon in there, mix it again, add a little purified water, pour it over my broiled chicken with a side of vegetables. I like this dish and I grew up with garlic and salt on the table. In the light of some studies a few years back, I cut on the salt. I believe that was a mistake. If you don't have hearth conditions, salt is good for you, as recent studies disprove the previous studies.

I used to experience the hearth pounding, one time I ended in ER, but they could not find anything wrong. I used to also not be able to catch my breath and breath really heavily, just from simple things, such as going up the steps. I had to raise my pillow when I slept, because I feel like I would choke.

I have experienced all your symptoms, except rib cage pain--the only time that happened to me is when I was pregnant with my first and second child, so not sure if was lyme related or not, but I could not eat enough because the food or anything else that got squized in my tummy, made the pain worse. Strangely, it did not happen during my third pregnancy, while all my lyme symptoms restarted.
How I am:
Yesterday was horrible, I thought I was going to colapse, v. v. v. dizzy and a lot of pain as well, today Much better, so I don't know what to think, yet.. I will have to ask my dr if dizziness could be a herx, that way, I'll know if it's working.It's been about a week since I started these abx, so I think it is still too soon to tell.
Posted 9/24/2010 10:36 AM (GMT 0)
Hi Simela, hope you're feeling a little better today, I to had a bad day yesterday but up to now today apart from some aches and pains I'm able to function. I'll try your salt lemon and garlic mix, thanks for the tip.

Need to rush, take care.

Mik.
Posted 9/24/2010 7:59 PM (GMT 0)
Mik,

2 days ago was really bad, yesterday a bit better and definatelly better today. My problems with lyme are in cycles. After a few great days, a day that is really really bad is around the corner. There have been so far probably 20% of the days I could not function. The rest have been bearable or great.

I hope you feel better.

Simela
Posted 9/26/2010 8:47 PM (GMT 0)
Thanks Simela....I do feel good today and I'm glad you are having a little respite from your symptoms. Do you have Bartonella??? Apparently Bart has a multiplication cycle that kicks a*s every 5 days, lyme cycles every 4 weeks. I only had a 1.4 titer for bart, which was equivical, so does this mean I was exposed?? I don't know. But in the beginning of my treatment my symptoms cycled every 4/5 days, then over a few months they began to cycle every 4 weeks. For some reason this month, after 3 good months, the symptoms have come back to a couple of days a week...................................After 14 months of ABX I sometime wonder if all this is in my head, there's only you folk on this forum that keeps me thinking straight.

I hope your tomorrows great..

Mik
Posted 9/28/2010 2:00 AM (GMT 0)
Mik:

I read an article by a LLMD and he said equivocal means not sure or almost +. He said the lab doesn't have diffuculty in qualifying a test as neg, so equivocal (he said) means that there is a little but of something in there, otherwise it would be negative. I had a good morning today, but a horrible afternoon. I had to take a nap, I felt like I was going to faint. Hopefully tomorrow will be better.

It seems that 4-5 days is my cycle right now. I tested neg for bartonella (I took the test while on abx which is not recommanded), so I don't trust the results. My LLMD things I have it, based on clinical diagnoses, but not sure. I too wonder sometimes if I am really sick, esp on my good days, but then a bad day comes, as a reminder, to keep me on my toes!

I've only been on abx for 2 months--time will tell. I hate talking all these pills, but then I am considering the alternatives and that is scarry as well. My LLMD got bit and has a surgery for his knee schedualed up coming soon. He is on IV meds. Remembering how much worse people got, having several surgeries bec of lyme, makes me believe it is worth the fight to keep it under control and not let it take over. Had my garlic receipe tonight, hopefully that killed some of the monsters.

Hope you will feel better soon!
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