Lyme test positive!

Specific Illnesses & Conditions
21

— Begin quote from “MAVLisa”

KennedyLane - I completey understand what you’re saying. But, so many people have this illness, as it is a worldwide epidemic. so, it is not so far fetched that it is cause of many chronic disorders that are given labels like MAV, CFS, Fibromyalgia, MS in some, and the list goes on. This is most certainly not snake oil, but a very serious epidemic that is “hidden,” but each day we are learning more and more about this awful illness. I wish more than anything this wasn’t occurring.

Scott and I had a coversation about the scientific articles. Once you learn about Lyme, you will see that these articles have extremely poor methodology and are based on guildelines which I believe are grossly flawed. you can see that discussion and other discussions on page one of this forum, entitled, “Other illnesses and conditions.”" The specific discusson on various articles can be found here, http://mvertigo.cloudapp.net/t/common-misperceptions-critical-appraisal-of-chronic-lyme/5527. I won’t expain more on the genereal discussion page.

— End quote

Thank you, Lisa.

I want to mention that, quite oddly, I received a text yesterday from someone I know who was checking in on me. She mentioned she had a family member who had intermittent severe vertigo due to a Lymes Disease infection! I couldn’t believe my eyes when she mentioned LD and dizziness! How weird that she would tell me that after I just read about several of the folks on this board being diagnoses with LD.

Something I’ve always wondered about is that two months before my dizziness started, I contracted severe food poisoning from sushi. I had all the classic symptoms, including a fever. A week later, I had a very strong feeling like my spine was vibrating all night. It was the weirdest thing and something that occurred a couple more times over the next few months. I wonder if there was some bacteria or parasite in the raw fish that caused my dizziness? I had a brain MRI so I’m assuming that anything growing in there, parasite-wise, would have shown up???

The problem with my dizziness is that there is a huge laundry-list of “could be” causes. This past January I had additional treatments to my neck, this time having steroid injections into c2-3. About 5 weeks later, I noticed a HUGE improvement with my dizziness, one that waxed and waned, but essentially kept me feeling pretty well (maybe at 75%) for 3 months. However, that ended with a bang about a month ago when the dizzies came back worse than I had ever experienced. I had taken a flight the day before my symptoms came back and also developed a slight head cold.

Further, I experienced stiff finger joints while sleeping that started up again during this time as well. (I had experienced this in the past and always assumed it was an auto-immune thing…). Thus, I’m left wondering if I have auto-immune disease of the inner ear. However, when I saw Dr. Hain in the fall, he told me he wasn’t seeing this diagnosis in me.

22

Nubs - The best test is igenex but the lab is in california, USA. You can call their number and they will mail the kit for free. They always answer and are quite kind. but, remember, there is a huge time difference because it’s western USA. it’s even three hours behind me in the northeast. You would then need to have a doc like GP sign off on slip, and mail back on own. the blood does need to be centrifuged so would need that done. Not sure if GP would have that device. I would suggest maybe just starting with initial panel. I can explain more once you get the kit if you like. my very best to you! and, btw, you would want to see the results, and have it interpreted by someone who understands Lyme. It is not a simple positive or negative. you want to see if any Lyme Specific Bands. I’ll be happy to help with that.

23

Kennedy -

Vestibular issues and headaches are very common symptoms of Lyme and Coinfections. Dr. Burrascano is one of the top Lyme researchers. This is a good read by him and something that I often refer to. He goes through symptoms as well as diagnosis, testing, treatment, etc. lymenet.org/BurrGuide200810.pdf it will make more sense as you learn more about Lyme.

Steroids are actually quite bad if one has Lyme as they suppress the immune system and cause the bacteria to prosper. You might initially feel some relief from the decrease in inflammation from the steroids, but inevitably things will worsen. There’s a lot written on this topic if you wish to read further.

i saw Dr. Hain and he did not know about Lyme like most doctors. I, though, didn’t know at the time as I was ignorant as well and my husband who is a physician was ignorant at that time like most doctors.

Bottom line is I strongly feel when multiple symptoms (multi-systemic symptoms) arise, it is very likely that they are due to same underlying cause. I believe a MAV diagnosis isn’t looking at underlying cause. and, again and again, people are being diagnosed with MAV when they have dizziness and then some list of other neuro symptoms, oftentimes chronic fatigue (not always), etc.

all my best to you

24

— Begin quote from “MAVLisa”

It is not so far fetched that it is cause of many chronic disorders that are given labels like MAV, CFS, Fibromyalgia, MS in some, and the list goes on.

— End quote

— Begin quote from “MAVLisa”

One thing I learned is various disorders, such as MAV, Firbromyalgia, CFS, are labels given for symptoms, without exploring the underlying root problem.

— End quote

Lisa, this is not correct. These are not labels for symptoms, they are diagnoses of diseases. Are you saying that migraine, CFS, Fibromyalgia are not real diseases but are instead all Lyme? If so that is an extraordinary claim.

— Begin quote from “MAVLisa”

A MAV diagnosis isn’t looking at underlying cause.

— End quote

The underlying cause of MAV is migraine, that is what the ‘M’ stands for. If someone has vertigo for another reason - eg Lyme, BPPV, vestibular neuritis, Meniere’s disease or any number of other reasons then that is the underlying cause for them. But vertigo is a well established and documented symptom of migraine.

This is a migraine forum. It is not a generic ‘vertigo’ or ‘dizziness’ forum. People are here because they experience vertigo as a symptom of their migraine. Absolutely, some people find out they have another problem instead, or others that they have another disease triggering or exacerbating their migraine. But, on a migraine forum, to dismiss the possibility that migraine is the cause of someone’s vertigo, is wrong and misguided.

25

I do not believe I am misguided. I am seeing that oftentimes MAV is a diagnosis given to people presenting with so many other symptoms beyond headaches and dizziness. So many people on this forum have a plethora of chronic neurological symptoms, as well as non-neurological symptoms. This is when I believe that MAV/VM is a label. I think the same for CFS and Fibromyalgia. Those are labels given to a symptom complex. And, when these patients are appropriately treated for Lyme and Coinfections their symptoms get better. Headaches and dizziness are, btw, very common symptoms of Neurological Lyme and Coinfections.

26

I understand Lisa’s point that when people present with migraine plus many other symptoms, it might be sensible to test of Lyme. And I agree with you. We know that MAV is a diagnosis of exclusion and I do agree that doctors should be more aware of Lyme and run our blood through Lyme tests when people are presenting with certain symptoms.

But Lisa, you must understand surely, that migraine CAN present with a plethora of weird symptoms. Have you read any of the work by Dr Oliver Sacks? He has written a whole book on migraine and a whole book on hallucinations caused by the brain. It’s fascinating stuff. Or even Dr Silver’s paper on non headache manifestations of migraine. ukfibromyalgia.com/condition … raine.html

I think it’s important to remember that migraine CAN cause these types of symptoms, particularly as we are on a migraine forum. Whilst also recognising that Lyme is a potential alternative misdiagnosis in some cases.

Nubs: Google Igenex or Infectolab. I got a test kit sent out to me from Igenex. I asked me GP if they’d take the blood. He said yes. Dizzie Lizzie may be best placed to recommend which tests to go for. I haven’t gone down that route as I’m not sure my insurance will pay out if a doctor hasn’t ordered the test, so I am going through the Breakspear hospital instead. Consultation with them, then they order the tests.

27

MM - Thanks for your response and link. yes, I have read works by Oliver Sacks. And, I am aware that a migraine mechanism can cause various neurological symptoms other than head pain.

When I speak of MAV as a label, I am always referring to people with a plethora of chronic neuro symptoms, and sometimes non-neuro symptoms as well, being diagnosed with MAV. It is rare to find a patient diagnosed with MAV without the above issues. When there are a plethora of symptoms going on years, I definitely think it’s time to look for underlying cause. It is Lyme for so many because it’s an epidemic as much as I wish it wasn’t.

I read the attachment, and I do know that Dr. Silvers has helped many here, but I don’t think he is aware (like the majority of his colleagues - my neurologist included) of the prevalence of Lyme Disease causing such symptoms. This write-up was written in a fibromyalgia magazine and I can guarantee you that there is no mention of long-term antibiotics (Lyme being at the root) being successful with treating fibromyalgia symptoms.

My neurologist wants to keep me posted. He is a neurologist whose office is located in one of the most endemic areas for Lyme and still didn’t know how to properly test or assess for this disease. He is such a smart and kind doc, but the education on Lyme is lacking to say the least.

28

— Begin quote from “hillsta”

This has been spoken about before. Is it just Lyme or is Lyme causing MAV. Its a hard one

— End quote

Migraine is caused by a genetic predisposition. Lyme does not cause VM but could be a potential trigger like any other untreated disease. See point 2 under Lifestyle Modifications of The Survival Guide.

29

— Begin quote from “MAVLisa”

I actually disagree about the Topamax. People with various illnesses/labels are constantly given drugs to treat the symptoms (and they sometimes do work to alleviate symptoms) until they discover that the underlying root is Lyme.

— End quote

Topamax has given people their lives back on this forum. Finding the right med for uncomplicated migraine is not always easy and sometimes a range of them need trialling to find something that “fits”. And it goes without saying that if you have a complicating additional illness such as Lyme, it should be addressed. It is obviously missed sometimes. Doctors aren’t perfect.

— Begin quote from ____

… these articles have what I think is poor methodology and are based on guidelines which I believe are grossly flawed.

— End quote

Complete nonsense.

"Since the guidelines for the diagnosis and treatment of Lyme disease, formulated by the Infectious Diseases Society of America (IDSA), neither recognise “chronic Lyme disease” as a distinct clinical entity nor advocate more than a short course of oral antibiotics for the treatment of Lyme disease, there is some public confusion surrounding this disease.

That confusion encouraged then Connecticut Attorney General (AG) Richard Blumenthal to launch an antitrust investigation of the IDSA guidelines. This culminated in a detailed and extensive review of their validity by an independent panel approved by the AG. The independent review panel, which relied on more than 1,000 published scientific papers in rendering its decision, issued its final report in May, 2010. It unequivocally affirmed that: (a) there is no published evidence to indicate that extended antibiotic therapy is beneficial for the treatment of “chronic Lyme disease”; (b) there is no well-accepted definition of post-Lyme disease syndrome, also known as “chronic Lyme disease”; and that (c) there is no convincing biological evidence for the existence of symptomatic chronic Borrelia burgdorferi infection among patients given recommended treatment regimens for Lyme disease.

It was not surprising that the review panel unanimously upheld the IDSA guidelines since the IDSA’s recommendations for the treatment of Lyme disease are in complete accord with those of the European Federation of Neurological Societies, the European Union of Concerted Action on Lyme Borreliosis, the American Academy of Neurology, the Canadian Public Health Network, the German Society for Hygiene and Microbiology, the British Infection Association, as well as those of expert panels from at least 10 European countries.

To deny the existence and validity of such an overwhelming consensus of independent expert opinion, in the absence of convincing evidence to the contrary, is an example of anti-science denialism."

30

Can I say I am quite pissed off about how this thread just got pushed into the other illness column!! I mean come on…
Quite obvious that it is meant for no one to read. I’m not trying to come off as being rude or anything but what the hell does general discussion mean?!
Any way if any one is intersted in testing, or just anything in general about Lyme disease you can pm me or contact me via email or FB. The purpose of this thread was to explain my situation and help others! Everyone here is sick and if you have not tested for Lyme and the migraine meds don’t work…looking into lyme simply can’t hurt.

Lisa

31

— Begin quote from ____

Can I say I am quite pissed off about how this thread just got pushed into the other illness column!! I mean come on.

— End quote

http://www.mvertigo.org/forum/viewtopic.php?f=31&t=6713

32

The reason it got moved is because once again it turned into another Lyme debate

I think the debates should have their own posts. It’s unfair on the people who are posting there story. Every time someone posts that thy have Lyme it just gets flooded by a pointless debate.

33

When Lyme Disease Lasts and Lasts - The New York Times. Thought it would be of interest to people here.

34

All I can say is I hope that anyone looking into Lyme Disease reads BOTH my many posts as well as Scott’s and makes their own informed decision. As I said before, Scott, IDSA guidelines are based on studies that didn’t even treat for coinfections. You can treat someone for Lyme for an eternity, but if you do not address the proper coinfections that one might have a person is not going to get better. I think there are many other methodological flaws in these studies. I won’t repeat myself, as I wrote them out in other threads.

35

Personally I would not be using antibiotics for longer than what is suggested by guidelines. Doing so increases risk of an adverse event and promotes antibiotic resistance in the population.

Four randomised controlled trials that show no effect with long term antibiotic use compared with control groups.

— Begin quote from ____

  1. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease.* N Engl J Med*. 2001;345 (2): 85-92.

  2. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.

  3. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.

— End quote

Treatment duration is usually 14 days but may be as long as 28 days under the following conditions: Patients with persistent or recurrent joint swelling following initial therapy may be retreated with another four-week course of oral antibiotics (or 2- to 4-week course of intravenous ceftriaxone).

See the following article: “Antibiotic Therapy Is Not the Answer for Patients with Persisting Symptoms Attributable to Lyme Disease” Clinical Infectious Diseases Volume 45, Issue 2 pp. 143-148.

http://cid.oxfordjournals.org/content/45/2/143.long

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