Lyme test positive!

Hello all! After two months of pursing Lyme disease, it’s offical, I have it. I was tested using the ingenex western blot. I will start treatment of oral antibiotics for approximately 6 months to one year. It has been such a long road finding out my diagnosis. I firmly believe that you should continue looking for a diagnosis even when it feels like there is no hope. I hope everyone here is doing well!!! Xo

Lisa
BB

Wishing you the very best of luck with treatment. I know you are so strong and will get through this, and have a beautiful, healthy, life!

Welcome to the lyme club! SO happy you have found an answer and best of luck with your treatment. I am finished with my 1st month of treatment and so far so good! Still have the rockiness but hoping it will go away soon!

BB
Now you have a diagnosis and starting treatment I hope you will make a full recovery and be able to enjoy life once more! Do you live in a Lyme prevalent State - would you have thought about getting the Lyme tests if you hadn’t found this website?
Barb

Lisa, wishing you all the best and hoping you make a full recovery. Did you quit taking the Topamax then or will you continue to treat migraine and Lyme? Hope you are seeing a knowledgeable doctor. I read your blog and I see you had quite a few other symptoms as well as the dizziness, like IBS etc. Do you think the Lyme has kicked off MAV?

Do let us know your progress xx

Hi BeautifullyBroken,

I am flabbergasted that you ended up having Lyme. Another person! I really have no idea why doctors do not run our blood through these test before dropping the MAV diagnosis on us. They could at least make us aware of the possibility even if they don’t necessarily recommend it. It’s madness.

I just pulled up your past posts and your blog and I guess now it all falls into place for you given the fleas and the timings of stuff. In some ways, you must feel relief at finally knowing exactly what’s going on.

I hope now you have a treatment plan and can start to fight this thing.

I know Lizzie is getting better with her treatment and obviously Lisa has dropped back in to update us on her recovery which is awesome.

It’s a positive time for you now- really pleased you can now focus on really getting better.
Go girl!

:slight_smile:

p.s I have my Lyme testing July 25th :slight_smile:

xx

Yes, the very best of luck with your treatment BB. I must say my reaction was just the same as MM’s. Couldn’t believe yet another Lyme diagnosis. Maybe it’s just me but even with what I thought was a cast iron diagnosis of VM, it makes me feel a bit uneasy again… what if, sort of thing. It’s really hard to keep a level head sometimes.

MM - I was wondering when your test was. I know you’ve been through the mill lately, and spent a lot on the test, so I really hope it moves you forward in your search for answers and relief.

I just read through your blog again BB and it’s great that you didn’t give up and that ultimately your determination and doggedness paid off. All the very best with your regime of antibiotics, hope you see speedy results.

Brenda

it sounds like you do have mav also though, because you did get some relief from topamax- if this was just lyme it shouldn’t have made a difference. Are you going to stay on topamax while you take the antibiotics?

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

if it was just lyme then topamax would not help at all.

So pleased for you too! It must be such a relief to find answer that is easily treatable. I wish you the best of luck with your treatment.

MM how do you get testing in the UK? Did you have to go through you GP? I don’t think mine would entertain the idea. What you said about fleas is interesting as we did have an infestation of cat fleas in our house once, we came back from holiday and they were everywhere, I had to stand in the bath with about 10 on me at once! But we’re going back nearly 15 years. Could it be a link? So hard not to clutch at straws when so miserable with it all.

As you know, Lisa, I wish you the very best of luck!

MM - best of luck to you on your upcoming test.

Sarah - 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. For example, patients diagnosed with, Fibromyalgia, are treated oftentimes with Lyrica or Cymbalta and experience some relief in symptoms. However, so many of those patients are finding out that their root issue was Lyme causing these symptoms. So, i definitely do not think that a migraine drug helping symptoms rules out the possibility of Lyme at all. I can see why you would think that, though.

Nubs - I just wanted to add that Lyme can lay dormant for decades even. so, even though you might have been infected over a decade ago, it is common for symptoms not to manifest until years and years later for various reasons (e.g., hormonal, stress, injuries, environmental factors, etc). I wish you all the best. I believe this explains that should you wish to read further.
cassia.org/essay.htm

Hello all!!!
Thank you so much for all of the posts! First and foremost, if it were not for you and the support of this forum, I don’t know where I would be today. Honestly, I look back at my posts from day one and remember where I was sitting in the corner of my couch crying, begging for my life back. I had no idea what the fuck was wrong with me!! sorry for the language … But when I came here, my pain and suffering was eased a bit because everyone here is going through what I am! My friends and family have no idea. But everyone here is my lifesaver, I love you all!
As for the Lyme, I never would have thought to test for it. I was bitten two and half years ago by fleas and ticks but never thought a thing of it. (Even though lyme disease is very high in my state.)Lisa brought Lyme to my attention, and while at first I was skeptical … I then began to wonder. Thank you Lisa !!!
Heres why : I take topamax, klonopin and Paxil --these meds help but not all the time and not for every symptom. I feel as though they mask my symptoms too. I have horrible IBS at certain times of the month and light sensitivity Always. Eye floaters are so bad! The meds never helped with that. So when the meds just didn’t cut it, I said hey…maybe it’s not Mav after all. I looked into Lyme and believe me I did so much research until my eyes fell off! I was shocked! I had the testing done and it came back positive. Words could not express how great I felt to have a blood diagnosis!!! On paper!! Something real! Finally, after two years!
It really is worth looking into … I will most def stay on the migraine meds during my antibiotic treatment bc I don’t want to play with fire And go through withdrawal. I will keep everyone updated!! Thank you all soo much!! I really encourage everyone to test for Lyme, worth every penny!

Xoxo
Lisa

— Begin quote from “MAVLisa”

Nubs - I just wanted to add that Lyme can lay dormant for decades even. so, even though you might have been infected over a decade ago, it is common for symptoms not to manifest until years and years later for various reasons (e.g., hormonal, stress, injuries, environmental factors, etc). I wish you all the best. I believe this explains that should you wish to read further.
cassia.org/essay.htm

— End quote

Hi Lisa,

I am very happy for you that you are beginning to feel better. With several people on this board receiving a diagnosis of Lyme in the past week, it’s hard not to wonder if I, too, could have been exposed at some point.

However, the article you linked does not sit right with me personally. It reads so much like an “infomercial” with the author’s claims that Lyme’s Disease can cause essentially every affliction known to man. I couldn’t help but wonder if the author has any financial incentive to claiming that Lyme’s Disease is at the root of so many diseases. It smacks of the snake oil treatments from the 19th century.

You have obviously done a great deal of research. Have you read peer-reviewed articles in scientifically-accepted journals that support this guy’s claims? I am not trying to be confrontational, I’m just curious. I’m also naturally skeptical after throwing away so much money on bogus cures (chiropractors, acupuncture, TMJ treatment, vitamins).

Please keep us updated on your progress and check in often; I’m fascinated by your story.

Kennedy

Hi
That is really good news and your life will get better. I am really thinking I should get tested for lyme. All the MAV medications have not worked for me and have only made my symptoms worse. This illness is a living hell and I just wish it would go away. I have really bad eye floaters, brain fog, severe dizziness, twitches, brain zaps, blurred vision, and lightheadedness. It’s just really strange that out of the blue I get this MAV and it lingers on and on while noting has worked. I realize Lyme disease can produce different symptoms in each person, especially at the different stages but I wonder if it’s possible to have Lyme disease without the flu like symptoms. I use to get minor flu like symptoms but that was a while back.

Katie

KennedyLane - I completey understand what you’re saying. But, so many people have this illness, and I think it’s 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 what I think is poor methodology and are based on guidelines 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 discussion on various articles can be found here, http://mvertigo.cloudapp.net/t/common-misperceptions-critical-appraisal-of-chronic-lyme/5527. I won’t explain more on the general discussion page.

Kaktie - I agree entirely. I can send you my story if you like and explains how I found out that I, indeed, have Lyme, after 6 years misdiagnosed with MAV. One thing I learned is various disorders, such as MAV, Firbromyalgia, CFS, are labels given for symptoms, without exploring the underlying root problem. I think that Lyme is particularly important to look into when a person has multi-systemic symptoms. It is not a coincidence that a person develops a laundry list of symptoms and they are not connected to the same underlying cause. Some people ONLY have neurological symptoms when it comes to Lyme and Coinfections. You do not have to have joint pain or flu-like symptoms. So many on this forum have so many symptoms way beyond dizziness and headaches. It is so important, IMO, to explore Lyme if you have multi-systemic symptoms.

— Begin quote from “MAVLisa”

Kaktie - I agree entirely. I can send you my story if you like and explains how I found out that I, indeed, have Lyme, after 6 years misdiagnosed with MAV. One thing I learned is various disorders, such as MAV, Firbromyalgia, CFS, are labels given for symptoms, without exploring the underlying root problem. I think that Lyme is particularly important to look into when a person has multi-systemic symptoms. It is not a coincidence that a person develops a laundry list of symptoms and they are not connected to the same underlying cause. Some people ONLY have neurological symptoms when it comes to Lyme and Coinfections. You do not have to have joint pain or flu-like symptoms. So many on this forum have so many symptoms way beyond dizziness and headaches. It is so important, IMO, to explore Lyme if you have multi-systemic symptoms.

— End quote

Hi MAVLisa
You are so knowledgable and a great help. I would love to read your story. I live in a rural area and I would visit my grandparents 4 times a year and there dog would get bite by ticks. I got bite by a strange bug 2 years ago when walking my dogs in back of this wooded area near my house, I am not sure what it was but I am taking this all into consideration. I never had problems with migraines or headaches and to have this MAV out of the blue and linger still boggles my mind. I just wish it would go away. I am also aware that apparently lyme can lie dormant for years without symptoms. I really appreciate your knowledge on this.

Katie

Does anyone know how you can get tested in the UK? I’d be happy to pay but does it have to be through your GP?