Lyme Disease

[HopeSprings]

Anyone been down this road? About a year into my first set of symptoms (1998), I saw a Dr. who suspected Lyme. I live in the Northeast, had a history of 2 Tick bites and the symptoms match perfectly. He did a Western Blot test, which I thought was negative. So he diagnosed Lyme clinically and put me on antibiotics. Over the course of the next few months, I ended up with multiple yeast and urinary tract infections which my regular Dr. attributed to all the antibiotics, so he pulled me off of them. In the time I was on them, I did not see improvement in my symptoms. I put this idea away and continued the quest for answers.

The other day I picked up recent lab results and I see he did a Lyme Test -- it had one positive result. I spoke to the Dr a few days before --didn't even mention these results. As I look closer at the lab report, it says you must be positive on 2 out 3 of these bands to be considered positive for Lyme. Ok so that's why he didn't mention it. Then I start doing some internet research and find that this particular band - band 23 is very specific for whatever this pathogen is that causes Lyme. Then when I look at my 1998 Lyme test, I see it was positive for several "bands," but didn't meet the CDC requirements to be considered positive for a Lyme diagnosis. I totally don't get it. How can you be creating antibodies to these Lyme "bugs" if they never entered your system? In digging a little more, I find out that the CDC has very conservative requirements to be considered positive, but a Lyme specialist might see things differently. Now these "Lyme Specialists" -- well none of them accept insurance and charge anywhere from 600-1300 just for a consulation. That's OUT.

I think Lyme can cause POTS. I'm not saying I have this and I'm probably just desperate at this point, but does anyone have an info on this topic? I think my husband is going to lose his mind - "Oh, Now it's Lyme Disease???"

[lgtaylor100]

My primary doctor is now treating me as if I had Lyme disease even though I never had a positive test.

The story behind this is that I went to a University opthamologist for dry eyes. I was diagnosed with blepharitis and given a prescription for doxycycline in order to "open up my glands". It has been almost two months now and my eyes are a lot better. My primary, who believes that POTS has to come from something ( he just doesn't know what), told me to double the dosage because perhaps I have non serogenic Lyme disease and that is what is causing all of my symptoms. I've been doing that for a week and of course do not feel any better. I also don't believe that I have Lyme disease but am also desperate so I'm following his protocol. Fortunately I'm not experiencing any side effects from the Doxycyclene so I'm willing to go a while longer with his theory.

[HopeSprings]

Wow, I'm surprised he's treating you for this. From what I've read, Chronic Lyme is an extremely controversial topic in the medical community. Many Dr's don't even believe it exists and certainly won't treat you without good solid evidence that you have it. At the same time, the testing is considered unreliable. What a mess - it may rival POTS in its complexity. How long is he planning to keep you on the Doxy? My understanding is that it can take months and months.... and months to work. I say it's worth a try, if there are no big negative side effects. Lyme makes sense because of the devastating cognitive, perceptual and hypersensitivity symptoms - my biggest issues. I just want to know if my test results mean anything - but I have a feeling these answers don't exist.

On another note, I have a horrible time with dry eyes too. They feel like dried up little raisins, it's awful. I'm not clear on how the antibiotics help this?

[skiberthoud]

Sorry I don't have much to add - I'm still learning myself. Funny, we had a family friend who was "ill" for a couple of years and then found out it was lyme. The majority of his symptoms were classic dysautonomia/POTS symptoms. It all started with passing out when he stood up...sound familiar? Of course, he got sick a few years before me and at that time I was ignorant to this whole world I now know. I think that Lyme can definately be the cultprit in some cases. Does someone with Lyme actually have POTS or is it that the "syndrome" (a compilation of symptoms)is a manifestation of Lyme? Sorry I don't know anything about the bands - haven't gone there yet. I am actually going for my blood draw tomorrow - off to Igenex it goes! Where in the NE are you (I'm in MA)? Have you seen the Lyme documentary "Under Our Skin?" Very interesting! And,yes, I agree that it's rediculous that insurance companies have ousted LLMD's so it costs crazy amounts of money to see one! Arg! Sorry for your frustrations...But I'm glad you brought it up. This topic has been on my radar lately.

[Yolaclover]

I saW the film Under Our Skin a month ago, it is all about Lyme Disease. I was stunned by how these people had symptoms so like my own. It does take many months of antibiotics to heal, most drs are not Lyme literate and follow Lyme protocols that do not heal the patients, it is a huge mess.

This movie was great, I cried as the people talked about how dismissive their drs were and how many were labeled as depressed or crazy.

[HopeSprings]

Tablet- I live in NJ now, but when I had the tick bites I lived in Westchester County, NY. What's the deal with these Lyme Specialists though? I called one - he charges $1300.00 for a consultation. I just want someone knowlegable to take a look at these labs and give me their opinion. But I can't afford that. So it's the insurance co's that have dropped them, not the other way around? Did you get the kit from Igenix or your Dr. uses them? I spoke with a Lyme researcher via e-mail who said the tests are very unreliable and the thing to do is just try the antibiotics. She also did say Igenix is the best lab out of all of them though. A bit of a contradiction. I just don't know if I can go through this whole antibiotic thing again. Please let us know how your testing goes or what happens with this for you.

[skiberthoud]

Naomi, I'm going through my PCP - they have the kits. When I was reading your post about the positive band I thought I had remembered reading some older posts that had more details. I just did a search and you might find some valuable info that way. There were a few in depth threads about lyme from years back. Once I did a search for "lyme" and one for "igenex" and got some good reads. This whole realm of lyme is controversial - does it really exist? Are any of the tests reliable? Should you treat with anitbiotics or alternative appoaches? I guess we have to just keep trying to educate ourselves. I am not sold on the idea of Lyme for me personally, but I'd love to get it ruled out (and if it's positive then i have something definate to work with). My PCP was at an "infectious disease" conference recently where they spent a lot of time on Lyme and she told me it seems so "me." We shall see. But do go and look up those old threads, and watch that documentary...

718mom - Right! I think my mouth was stuck open for days after watching it. I saw it back in May (Lyme awareness month so PBS was airing it) and I'm ready to watch it again (of course I seem to be on a documentary kick lately...)

[sue1234]

LOL! I can't help you on any info regarding Lyme, but I can totally see your husband rolling his eyes and listening to this new theory---only because my husband is in the same exact situation! He is VERY good about listening to everything I dig up and serves as my bouncing board.

It's good to keep thinking.

I was bit by a tick, sometime in the 90s, and went to the doctor. He said not to worry about it, so I didn't. I don't remember if I can match up any odd symptoms to it. My POTS began in 2006, but did have endocrine-type problems for many years before.

[HopeSprings]

Good idea to search past posts. There's lots of info already available here. If anyone reading this has been through this whole Lyme issue from start to finish, please let us know what happened. Did the antibiotics help the symptoms, make you worse, resolve POTS etc.? Thanks.

[Guest tearose]

I do realize the expense but in my "early days" of trying to figure out what happened after a bite on my hand and a rash on my arm...that was 1991...

doctors did want to treat back then and Lyme was controversial and not as well understood.

After nine months, it was a Lyme/chronic illness doctor who had the courage to do the workup. He found I had a positive Gunderson Lyme test and choose to start treatment. I had no significant change on oral antibiotics. Once on Rocephin IV twice a day, I started to feel and experience improvement. It took six weeks and I came back to life! Yes, it was expensive but I had no other options! I wanted to get better. After the IV was done, I still had edema on the left side of my body. This brilliant, professional, caring doctor said, "I can do no more, I want to now send you out to Mayo in MN". He wanted better for me too. The rest as they say, is history.

Mayo Clinic did help me but it was due to the Lyme doctor I got there.

I do believe that because of all the insurance issues and the fact that many "old school boy network" doctors want to squelch the idea that Lyme is so much worse that is generally accepted, the Lyme doctors must charge higher rates.

I ask you, aren't you worth it? Maybe you can save up for the initial consultation and then decide. Also, ask for a payment plan. I have forfeited vacations to afford compression pantyhose so I understand the expense issue.

tearose

[Bears Mommy]

Lol about the husband thing. Mine isn't very supportive and I know that he would roll his eyes at me.

I wonder all the time about Lyme. I grew up and am still in Minnesota, tick capital. It just became a regular thing for my mom to pick ticks off us girls. I've had so many tick bites I can't count them, so has my dad who has many of the same symptoms I do. We used to go to my grandfather's 120 ace tree farm where my dad wound take any fallen trees and turn them into firewood and later lumber. He came back with ticks constantly and so did we, sometimes multiple ticks. I don't know anything about lyme except I've never been tested.

[HopeSprings]

Tearose - did treating the Lyme "cure" you? Do you think POTS (wait, do you have POTS?) or dysautonomia was caused by Lyme? And specifically did you have cognitive or perceptual issues (I feel drunk & dizzy) and if so, did Antibiotics help this? If I had a big suspicion that this was my problem, I'd find a way with the money. It's just that we have wasted money before on out of network Dr's, chasing the latest theory - and it was always just an emotional and financial expense, resulting in no answers and no help. I'm just really confused about this one. I have a call into Columbia Lyme Research Center - they offer 2nd opinion appointments. They are way backed up, but hoping eventually I can speak with someone there and gain some insight.

Bear's mommy -- I had no idea Minnesota was a tick zone. I guess I thought of it as a Northeastern problem -- apparently not! Maybe you should be tested?

[schamsjj]

When my symptoms first started in March 2010 I went to a Lyme specialist and my Western Blot from Igenix came back positive. I started treating for many months and taking some off.

In August I was diagnosed with pots at Mayo. They don't believe it's lyme but i really have nothing to lose.

I am still currently using antibiotics. In the begining he also found I had very high levels of mycoplasma results that my regular doctors overlooked. The Mycoplasma is lower now.

Some things have improved and some have gotten worse. I still have all of my pots symptoms but less of a high heart rate.

Jared

[Guest tearose]

Naomi; to answer you,

Some of my symptoms did go away. I "feel" as though the IV rocephin killed the "bug" but I was left with permanent damage. The remaining issues are unilaterial lymphedema, and pots/dysautonomia.

The lymphedema was diagnosed first and years later POTS and dysautonomia were finally understood and diagnosed. For awhile, my doctors wanted to blame the SVT's, syncope, lack of sustained energy...on being a young mother with lymphatic issues. Finally, on my second trip to Mayo in 2002, they did a full ANS workup, and diagnosed the ANS dysfunction.

Although some people feel they have chronic lyme, I feel as though my lyme is gone but the damage remains.

I have developed many allergies to antibiotics however, when fighting a sinus infection I was on Biaxin and I felt improvement in my POTS. I asked the ENT about why this happens wondering about Lyme maybe still hiding somewhere. He said that antibiotics have a natural anti-inflamatory side effect and that was why I felt more wonderful than usual on top of the sinus infection!

So, I do believe that the Lyme pushed my body beyond what it could handle and left me with a super sensitive ANS and Lymph damage.

I do believe the Lyme doctor did the right course of treatment and I owe him a world of gratitude. I also appreciate the good docs I had at Mayo, MN. My favs were: a vascular Doctor, Dr. Suerger. My ANS neurologist, Dr. Fealey. An electrophysicial cardiologist; I'm blanking, but it was a "B" last name. Dr. Brandon maybe?

Anyway, if I can offer any more information feel free to ask.

[ramakentesh]

I think that Lyme is just one of many infections or stressors that can trigger long term illness. I doubt that the long term conditions of dysautonomia associated with Lyme are continuations of an infection because infectious disease doesnt work that way (unless ofcourse there is measurable progression which is rarely the case in this condition).