If you decide to fully investigate the Lyme route be aware

Specific Illnesses & Conditions
1

I had good reason to think I might have Lyme when I first started having migraine symptoms. And since my migraines are atypical with the balance issues the tinnitus, the nausea and with visual symptoms but very little headache involvement no one figured out migraine for a long while. And since balance was a major issue for a long time and tick bites are in my history Lyme kept coming up. I’ve had a positive Western blot with a negative elisa follow up years ago…and a recent clinical diagnosis of Lyme but no definitive blood work. Lots happened between then and now…migraine diagnosis fits, migraine preventative starts to work, but then I get hit with a case of transverse myelitis or CIS. SO I decide to have a lumbar puncture done to test for MS but mostly I had it done to test once and for all for Lyme disease in my Central Nervous System.

Here is where the warning comes. Unless there is no other choice and you are so miserable that you cannot stand it do not ever CHOOSE VOLUNTARILY to have a lumbar puncture if you are prone to migraines!!! Every migraine symptom, every migraine issue you have ever struggled with MAY (emphasis on may) converge into one horrific multi-day event caused not by a leak or abnormal procedure but by the simple act of releasing the pressure in your spinal column and allowing a certain amount of fluid to come out of the canal. Imagine every trigger you’ve ever avoided all wrapped up into one tidy little ten minute procedure that doesn’t even hurt…then BAMMO a day later your body rebels and continues to do so for days on end as the cascade just keeps going and going and going… All because I wanted to know for sure whether or not there MIGHT by Lyme in there in case I have need of steroid infusions due to the myelitis!!!

I’m 99% sure I don’t have Lyme. But I’m now on day five of a self induced migrainous hell because of that 1% possibility…not at all sure it was worth it. :cry:

2

Dolf,

I really appreciate your insight and common sense on this forum. You’re like a breath of fresh air – a true critical thinker who doesn’t buy into the crap served up about this.

Thanks,
Scott

3

Please anyone that reads this thread, I urge you not to have a spinal tap done to rule out Lyme. If positive, it is extremely accurate. However, most of the time (when someone does have Lyme - even neuro Lyme), the rate of false negatives are greater than 85%. Dr. Burrascano is a leader in this field, and most probably has seen the MOST patients and now dedicates his time to research.

He states, “Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children.”

You can find the above on page 8 lymenet.org/BurrGuide200810.pdf He goes into great depth regarding diagnosis.

Scott - I understand your views, and you are entitled to them but where you cross the line is advocating for FALSE information. You have not responded to many of my messages where I have directed you to the research. Instead, you jump on this post, calling Dolf a “critical thinker” when the info posted is inaccurate. If you want to make strong statements about Lyme please do the appropriate research, as otherwise you are doing a huge disservice to the people on this forum. but, at the end of the day, this is your forum and you can do as you please.

Dolf - this is in no way directed in a negative way toward you. I wish you all the best, and am glad that topamax helped you. But, I would be remiss not to say that just because an anti-seizure med reduces the symptoms does not rule out Lyme as the root cause. But, the main thing is that you feel better. that is the bottom line. I hope that the pain subsides soon. I am sorry that you put yourself through that when it is not a good test for ruling out Lyme. I used to think it was before I did the appropriate research.

I am not posting again on this thread. I will not take time debating you, Scott, but I cannot sit back and allow you to state false info on a forum of very sick people. that is unacceptable

4

Lisa,

I know that you have done a lot of research and are currently feeling a bit of an expert on the subject of Lyme. I also understand that you feel that you are under fire at the moment and that you need to be on the defensive for your cause, for that reason I will take no offense. However, I will point out a few things and make very clear my position and situation, which is well warranted, well documented, well researched, and well balanced in the world of medicine, both LLMD and non LLMD and in terms of research and medicine not just in terms of treatment.

First–with regard to my decision to have an LP–that decision, made with my neurologist was well in alignment with your OWN statement embedded in your argument.
— Begin quote from ____

Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure,

— End quote

Given my history of neurological symptoms with uncertain diagnosis and risk factors for Lyme I’ve been treated under a CLINICAL DIAGNOSIS OF LYME disease. This did not result in any change in symptoms for me. The migraine treatment did. At no point have I EVER CLAIMED THAT TO MEAN THAT EVERYONE WHO HAS DIZZINESS SUFFERS FROM MIGRAINE–nor have I claimed that everyone that has migraine symptoms has Lyme! Now As I stated in my past posting–since my migraine diagnosis I have had a further diagnosis of transverse myelitis or a clinically isolated syndrome often thought of as a first attack of multiple sclerosis. This diagnosis comes with a treatment possibility of high dose steriods–not a good thing if you might have Lyme disease–so a NON LLMD Neurologist and I decided that it would be a good idea to run a Lumbar Puncture to determine whether or not there were Bb antigens in the spinal fluid to figure out once and for all whether there was an active Lyme infection in my body that may be exacerbating all of these neurological events.

I want to be sure that you understand that I am not here to argue that Lyme disease is not real, nor am I here to argue the case that everyone who touches grass with their bare feet should be worried that they have Lyme disease. I fully support much of the balanced research that is out there regarding Lyme–and I understand the controversy and confusion caused by early medical research politics etc. But I do NOT support the idea of pushing long term antibiotic use on patients whose test results and clinical symptoms are not indicitive of Lyme–but may well be indicitive of some other medical difficulty.

I’m not going to argue–I’ve shared my story–that’s all I wanted to do.

The reason that I shared my post was to make sure that others would be aware that Lumbar punctures are NOT a willy nilly approach and that the investigation and pursuit of Lyme diagnoses are not a simple or pain free.

5

I never took your posts as arguing. you’ve been so kind to me. sending me lovely messages months ago. so, i was in no way upset with you. I understand your journey and decision. But, what I read was that you took not having Bb in CSF as 100% not having Lyme - I believe that is what you were saying - and that is not at all the case. I hope that I wasn’t unclear. I just really wanted to clarify that no Bb in CSF doesn’t by any means rule out Lyme, so a spinal tap to rule out Lyme is a bad idea. I didn’t want others to go through a spinal tap to rule out Lyme when it is falsely negative more than 85% of time.

My tone came from Scott continuously insinuating that I am not level headed and a fanatic. I am a well-educated, very level- headed woman, and do not appreciate that. that was in no way directed toward you, Dolf, and if it sounded like that I am deeply sorry. Thanks for understanding where I was coming from.

I agree that going years treating with no progress it is time to switch gears in some way. I do, though, see over and over again that people treat for years and do not target the appropriate coinfections for the appropriate amount of time and only get well when they do that. It wasn’t until into treatment that I found out that I have Bartonella. If I went years not treating that I would likely not have a chance in getting well. These coinfections are so vicious.

But, the main thing is getting well. If a migraine drug helped me to live a healthy life I wouldn’t be searching for the underlying cause.

Thanks again for writing. I really appreciate your honesty and kindness

6

— Begin quote from “MAVLisa”

My tone came from Scott continuously insinuating that I am not level headed and a fanatic.

— End quote

Lisa, you are making assumptions that are not true. I was not directing my post at you. It was made after reading another complete nutter talking about Lyme being a government creation and reflecting on some of the nonsense that BCB posted and a few others months back.

I do think you are very strongly biased and over the top – bordering on zealotry – in the way you analyse Lyme. You have said a few eye-brow raising absurd things concerning migraine too I might add.

Scott

7

You know, and this could be me being immensely naive, I get that–but seriously–if after spending nearly $3000 on bloodwork to test for Lyme disease (both standard testing, Igenex testing, testing from some company called Neuroscience, and the associated co-infections that go along with) treating for “possible” Lyme on the basis of “maybe” given the symptoms and the history and the non-commital results of all the blood work–THEN I get a lumbar puncture that ALSO says, nope, no Lyme in there–then I think I can pretty well say, You know what, I don’t think I have Lyme in me.

All that said–I still understand and recognize the controversy and the need to DO ALL OF THAT TESTING to be sure as you move forward with weird symptoms in an attempt to get well.

8

Dolf - I understand what you’re saying as well. But, the chances that CSF fluid would be positive if you have Lyme is so small - under 15% - so that negative testing doesn’t confirm or disconfirm anything. What’s most important to look for isn’t whether a person has positive western blot bands, but whether someone is positive on Lyme Specific western blot bands. I hear what you’re saying, though. The only thing that we want is to feel better, so if Topamax is giving you your life back, then that’s more than anyone can ask for. I hope you continue to feel well and the darn migraine from the spinal tap subsides.

9

I have been watching the “Lyme” threads with interest for the last few weeks, and noticed that a lot of people are thinking they may have Lyme because their symptoms “fit the picture”, but these weird symptoms a lot of us get can be the same in a lot of illnesses, autoimmune diseases (dry eyes, achy joints etc.), MS, etc. to name but a few. I went down this path a long time ago.

Ten years ago, “Lyme” was all the rage in the UK. Hundreds of people who had been diagnosed with M.E. and Fibromyalgia flocked to a doctor in the UK who was saying that all their symptoms were long standing Lyme disease. I too, went there. I phoned up Dr. ? and within 5 minutes of the phone call he told me I had Lyme. I then went on to send blood on slides which he looked at through a high resolution video microscope. I was then sent a photograph of my spirochaetes. I was told I had Babesia as well. I was told the diagnosis was a clinical one with high resolution dark field microscopy as a back up.

I was tried on Lymecycline, Doxycycline, Amoxillin, and was going to try Minocycline (known to cause bad migraine and dizziness). I couldn’t tolerate any of these, apart from the Amoxillin which I took for 3 months. Apart from feeling more dizzy on the Doxy nothing made any difference. I tried Samento which gave most of us horrendous migraine, there was talk of “die off” but the migraines were unbearable. I was given some sort of weird wormer. There was the Marshall Protocol (I know of someone who has not been outside in the daylight for 3 years because he mustn’t be exposed to Vitamin D with the Marshall Protocol).

My friend, who has M.E. rang the same Dr. as me up and was told “over the phone” that she too had “Lyme”. Like me, she ended up parting with £500 for the tests. We both thought about sending blood to Igenex, Western Blot etc. but none of these tests seemed fool proof, and, as I can see now, from the many posts, they are still the same.

Many of us were drawn into the diagnosis of Lyme as we wanted an answer to our weird range of symptoms. I, luckily, got suspicious, when it appeared that everyone that made the phonecall was being diagnosed with Lyme. I don’t particularly blame the Dr, I think he genuinely believed he was going to help people and be another “Edward Jenner”!

The Dr. I went to was eventually called before the GMC, suspended temporarily and I believe is now allowed to practice as a GP but not treat patients privately for M.E etc.

Christine

10

Thank you for posting this Christine. Very enlightening and a reminder for people to not assume a positive test and an agreeing LLMD = Lyme disease causing my dizziness.

Cheers S

11

I too got a diagnosis of Lyme over the phone.

The list of symptoms that doctors use to diagnose lyme are very non-specific. If you speak to an LLMD and tell them you have been sick for a long time, they are likely to diagnose you with Lyme in my opinion. A friend of mine was diagnosed with Lyme in the same manner. She did not pursue treatment as I told her to get more opinions first. I do think for many of us we want an answer, but I don’t think Lyme is the answer for many on this forum. It is courageous that our members with a Lyme diagnosis are being treated and I hope they will keep us posted.