the last few evenings i've spent searching and reading various posts and sites regarding lyme, and have finally decided to join this site in hopes of finding a glimmer of hope for my wife's recovery..
From what i've read we've been down the classic tale, as many others have reported, not knowing what we're dealing with.. the runs to the emergency room, CT scan, vertigo, inner ear virus, ear specialist, and now a MRI that shows there is nothing with the inner ear, but two small spots.
The ear specialist suggests that we might be dealing with lyme, as all the symptoms that my wife has are on the list.. It breaks my heart..
So he's drawn blood and sent it to the Mayo Clinic for some sort of antibody test that is suppose to tell us if it's lyme disease, and then to put the cherry on the cream he says that the two spots on the brain may be MS, so he's scheduled a visit with a Neurologist to review that..
we will not know about the lyme "antibody" test until this coming Wednesday or Thursday, from my scouring the web i'm not sure if it will be valid with all of the skepticism surounding test results and particular facilities.. Does anyone know how the mayo clinic rates for lyme testing? and or if the mysterious "antibody" test that was ordered rates with the latest strategies in diagnosis?
We're in northern central Indiana, can anyone refer me to a LLMD in our area?
Regarding tick bites, sorry forgot to mention, we remember no recent tick bites, but she remembers some as a child.. don't even know if it is relevant..
thank you in advance for any help or comments that you may have..
Last edited by Rod72; 01-01-2011 at 11:25 PM.
Reason: by instead of be.. typo.
Lyme testing is not accurate. Even with a one of the best labs for testing sometimes the test still aren't accurate. The best lab to go through is Igenex in Palo Alto, Ca. You can find them from where you are sitting. You can call and talk to someone, tell them which area you are in. From what I have heard they will send a test according to where you live. In my opinion your wife will want to have a Western Blot. I don't think antibody test are good at all.
I went to Mayo 6 years ago. They didn't even want to talk about Lyme. They wanted instead to tell me that I have alsheimers, some retradatioin and that I partied to much when I was a teenager.
The doctors there are just doctors, nothing special about them. It was just like going to a doctor to his office.
There is a post at the top of the Lyme forum. The Administrators have explained how we can share Lyme doctors names.
There is the possiblity that she was bitten when she was younger and now it is surfacing. Stress, other illneses can bring it out.
Or there is the chance that she has been bitten recently and no one saw it. ticks can be as small as a poppyseed. OR there is the chance that she was bitten by mosquitos, fleas, lice...any biting bug that goes from host to host can carry it.
There are different types of protocols in treating Lyme. What works for one person may not work for the next.
Just to clue you in ,Borrelia (Lyme Disease) IS a cousin to the syphilis bacteria. There are 300 to 400 different strains around the world.
Some say it can be transfered via sex, and people should not give blood, beings it can be transveferd via blood transfusions.
Your wife is a lucky woman to have you on her side. I am sure with you helping her you both will find the answers.
Detoxing is very good also and she will need supplements to help raise her immune system.
We are here if you or she has any further questions.
When does she get her test back that was sent to Mayo?
The following user gives a hug of support to jojo: Rod72 (01-02-2011)
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Thank you so much for taking the time to share, and write to us..
It's really disapointing to see that you didn't have better response from your trip to Mayo, as for other health issues i know people have had great results.
On the surface that i've just begun to scratch, it seems like there are tens of thousands of people that suffer even more due to the controversial dark cloud that is over this horribly debilitating disease in the medical community..
Regarding our antibody test, we're suppose to hear something this week Wednesday or Thursday?
Tomorrow even before our results are in, we plan on calling our family physician to see what his opnion and stand is regarding Lyme and our current status, we haven't had a chance to speak with him yet, hopefully he's a believer and proactive..
After that call to make an appointment with him, i intend to call Igenex to make tentative plans for testing with them based on our outcome from Mayo's Lab.
I went to a website that California's Lyme association has, and they have a checklist with symptoms, my wife currently or recently has had most of the symptoms. I've also read in the past few days that Lyme is an imitator, and mimics upwards of 340 diseases..
Something that I forgot to include in my initial posting is that our ear specialist had also prescribed an antibiotic to try attack Lyme, if it is Lyme, even as we're waiting for the results.. seemed proactive..
He had prescribed Clarithromycin 500MG, 1 tablet every 12 hours, 20 tablets total.
I don't see this as a common antibiotic that people mention, but when i looked it up, its listed as being "also used for lyme"..
I read about this herxing, i suppose if this antibiotic is working, and if it is Lyme, we should see some signs of this..? How many days after an antibiotic is initiated does herxing become evident? is it a common timeline or like most things different for different situations..
My wife's condition mostly resemble what i've seen referred to as neuro lyme, as most of her symptoms have something to do with her head: Severe fatigue, neck stiffness, difficulty with concentration and reading, can't look at anything for an extended period of time, short term memory is questionable at times, difficulty with speech at times with finding words, disturbed sleep, twitching of muscles at times, dizziness (a few times couldn't stand up..), light headedness, pains..
Again, Jodie, thank you so much for taking time to write to us.
I'll post what happens.. maybe it will help someone else as well?
I am also on the Clarithromycin for my Lyme and I have gotten better. It will take longer than 10 days in her case and herxing is different from person to person. My LLMD told me that I will get worse before getting better and was he ever right. My antibiotic kicks in about an hour after I take it and it hits hard. It then wears off by the next hour. Overall, my well being went right down the toilet withing a couple days of starting treatment but that was a good thing. It meant the abx was killing off the bacteria but that bacteria die off also creates toxins. That is why detoxing, probiotics, sound sleep, diet, and supplements are essential to healing. I occasionally had to rely on friends and loved at the beginning of treatment.
Your wife's symptoms really resemble Lyme and also suggest taking the Igenex test.
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Welcome to the board, I am sorry to hear of your wife's situation, one of which so many of us know only to well.
It's great that you are researching as much as you can, as there is certainly a lot to learn about lyme.
I was in your wife's shoes a year ago, and I have only just been diagnosed with Lyme and Bartonella in Novemeber. I started my treatment only 6 weeks ago. Herx reactions are pretty different for every one, mine started after 1 month of antibiotics, and is still going strong. I know others who have never had a herx. It seems to be a very individual disease.
As you have already mentioned, testing is extremely unreliable, and even the best labs can produce false negatives. I had 3 negative tests for lyme before I sent my tests to IGINEX all the way from the UK. I then tested positive for Lyme and the Co-infection Bartonella. I would highly recommend you seek out an LLMD as soon as possible, they really are the only Doctor that can diagnose and treat this disease. The waiting list's can be long, so the sooner you book an appointment the better. You could always cancel if you feel you don't need it later on.
Best wishes to you and your wife, she is very lucky to have your support, please do let us know how things are going.
Last edited by littlehutton; 01-03-2011 at 03:23 PM.
Reason: spelling error
The following user gives a hug of support to littlehutton: Rod72 (01-03-2011)
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Today we were able to sneak in to see our Family Dr., who we've been with for several years, he's been wonderful to us, not one to walk in and out staring at your folder, not to even make eye contact, (we've had one of those years ago..)..
He hasn't see many cases of Lyme, but one that he recalls a few recent years ago, says cleared up with a single run of antibiotics.
When I checked with our local health department today to see how many cases were reported in their latest published annual report, in 2009, 10 cases. I spoke with the lady that actually does the interviews with patients after being reported, and she said that their may be more valid cases, but they're limited to what their definition of LD is, one of the requirements is that the classic bullseye along with a tick bite..
Our Family Dr. absolutely agreed that only a few labs in the country are worthy when dealing with a potential diagnosis of Lyme..
I asked him why there was such controversy around Lyme Disease, and he explained that, most of the controversy is based around the "chronic" case of Lyme Disease..
I'm not sure that i really understand the politics, just hope that people are able to find a way of getting away from such miserable debilitating symptoms.
amazing what these ticks can do.
Once again, Thanks to all for the kind and inspiring comments..
He hasn't see many cases of Lyme, but one that he recalls a few recent years ago, says cleared up with a single run of antibiotics. Rod
As good as you feel about your doc I have to say that I find this comment highly suspect and I hope this isn't what he is planning for your wife. For recent infections it's possible one may feel better initially, but Lyme can be suppressed only to reappear later. Also, I wonder what he means by "a single run". Abx these days can be for 3, 5, 10 days. I doubt that anything less than 30 days would do anything. And if she's been infected for awhile long-term abx would be definitely in order.
I do hope you can find an LLMD in your area to begin proper treatment. In the meantime, you might also look into the salt/C protocol which she could begin immediately. This can be done with or without abx. and costs nothing (except for the high quality salt).
I wish you all the best.
Last edited by jenj770; 01-04-2011 at 02:50 AM.
The Following User Says Thank You to jenj770 For This Useful Post: Rod72 (01-04-2011)
Hi Rod, I am sure your doctor is a nice person. BUT he/she is not a Lyme specialist. And neither are most infectious disease doctors.
The first doctor I went to that was a g.p. put me on antidepressants, pain pills. And gave me a lecture on how humans have gotten depressed because we belong in packs like back in the cave man days.
The second doctor I went to which was also a g.p. said, I needed to learn to live with what ever i had. And put me on antidepressants, pain pills, uppers, downers, cortizone shots in my neck. He had me on 14 pills at one time. None of which were anything to help "cure" me.
The moral of my story is, if you had cancer you to a doctor that specializes in cancer. If you have ear problems you go to a ear/nose and throat doctor.
So with suspicions of Lyme you go to a doctor that is trained in treating lyme and co-infections such as Babesia, Erichliosis, Bartonella, your wife most likely needs to be tested also for Mycoplasma Pnumoniae, Chlamydia Pnumoniae, Epstein Barr, Cytomeglovirus and other herpe viruses. There are many herpe viruses that can affect us all. It does NOT have to be the sexually transmitted type.
Talking with someone at the health department is not good info either. Majority of us did not get a bulls eyes rash. It is only a small handful that do.
I talked with a park ranger this last spring where I live. I had a Lyme sticker on my car. And he decided he was going to tell me about Lyme. HA! He had NO clue what I had been through. and stood there and told me what I had heard from doctors in the past. Six week antibiotic treatment, bulls eye rash. told me about the dangers of antibiotics....WHAT??? What about the dangers of not having a medicine for lyme?
If per say your wife has had lyme for many years. She technically has Chronic Lyme.
The Following User Says Thank You to jojo For This Useful Post: Rod72 (01-04-2011)
I'm sorry if i wasn't clear enough with "run" what he had explained in more words to us is that the prescription had to be taken for the prescribed duration.
He was pretty open with us that cases were limited, and that he was not an expert, even added he would speak with another doctor friend of his to ask some questions..
I've found a LLMD that is about 2 hours away and called yesterday morning, left a message, with no return call yet? I see that i need to somehow qualify for private messages here before anyone can refer someone privately, not clear to me how i get private messaging..
As if the symptoms, and loss of quailty of life are not enough, that this cloak of "mysterious controversy" requires cryptic need for private messaging to find a suitable doctor.. Can someone please explain what this secrecy and controversy is all about?
As you mention salt, believe me i'm taking what our family doctor says "with a grain of salt" as he's had limited exposure to treating this..
Where would be a good place to learn more about this salt/c protocol and how to do it?
I've found a LLMD that is about 2 hours away and called yesterday morning, left a message, with no return call yet? Hopefully, soon.
I see that i need to somehow qualify for private messages here before anyone can refer someone privately, Yes, board rules
As if the symptoms, and loss of quailty of life are not enough, that this cloak of "mysterious controversy" requires cryptic need for private messaging to find a suitable doctor.. Can someone please explain what this secrecy and controversy is all about? Many MD's been issued warnings, some are even no longer practicing because they have been taken to task for coming up w/methods to treat Lyme Disease that have not met with approval by the big pharm and/or the AMA. Therefore, we need to protect the LLMD's that do treat. I believe there is also a rule on the boards about not mentioning doc's names in general, but the LLMD's have had a particularly difficult time of it.
Where would be a good place to learn more about this salt/c protocol and how to do it? at this point you would have to do your own research but it wouldn't be difficult Rod
The Following User Says Thank You to jenj770 For This Useful Post: Rod72 (01-04-2011)
you know i've been thinking about the political controversy that seems to be stagnating more research and advances with this disease, and came to wonder why the drug companies haven't used their lobyists to push for the acknowledgement of chronic LD, logically it would sell more medication on a much larger scale globally..? in turn medical schools, insurance companies, the entire established "machine" could eventually better the lives of many more people..? sorry just thinking..
on a more micro note, we found a somewhat local LLMD that we made an appointment to see later this month.
Again thanks to all for both sharing and supporting with our new journey.
During our Doctor visit we were told that they would send our blood lab test to the Mayo Clinic for the Lyme antibody, and today i found out that the local lab did it on there own.. bait and switch.. the result of a test the lady can't describe nor name over the phone says that the result is within normal range 0.24?
I left a message for the Doctor that i was really upset about them not sending off to the Mayo clinic, no response yet.
I doubt the confidence level of the test performed is even of worthy discussion, they simply wasted our time... I'm furious.
I am so sorry to hear of your struggles, but welcome to the world of Lyme.
Pretty much all of us have been through the mill with this disease, bouncing from one doctor to another, and one test to another. The way you are being treated is appalling, but unfortunately does not surprise me. I have had similar issues in the past, and I know how terribly frustrating it can be.
It's fantastic that you have the appointment with the LLMD lined up. Time is of the essence, and the sooner you see the LLMD the better, please don't keep wasting your time and money elsewhere. You will not get the help that your wife desperately needs.
Please do let us know how things are going
Last edited by littlehutton; 01-05-2011 at 02:18 PM.
So sorry to hear. Unfortunately, this tends to be "par for the course".
As has been said previously, I wouldn't even fool around with Mayo Clinic. They are premier generally, but Igenex is the only place you're going to get accurate Lyme information. Then again, tests for Lyme are not reliable, even at Igenex. I understand everyone wants a test to prove that they have (or don't have) Lyme, but Lyme just doesn't fall into that category.
You said you had found an LLMD. Hopefully by now they have contacted you. If so, they can (and probably will) send her blood to Igenex while they are evaluating her symptoms.
Maybe it's really all for the best that there was a "mix up" with sending to Mayo (since they are not considered a Lyme resource). Just my take.
I hope for you a lessening of frustration from here on. Let us know how it goes.
I saw two neurologists when trying to identify what I had. They were worthless quacks who made my headaches worse with Topamax and accelerated the spread of Lyme with 3 rounds of steroids. I asked them straight up to start running tests but they insisted to give the Topamax time to work. Both hacks also made sure I plenty of Effexor for depression although it eventually helped with anxiety after the Lyme diagnosis. I think these two neuros had stock in Pfizer or something. Sorry for the rant but I still have issues with the docs who made the last year of life unnecessarily difficult.