After 3 Years - Lyme May Have Been The Cause......

[runningshoe]

Happy Holidays everyone,

Some of you will recognize my name, I have been around for 3 years. I have news to share but first a quick intro for those who don't know of me. 3+ years ago the "lights went out" when I was driving my car. I had just finished a great run and was finally feeling top notch after a long recovery from a hysterectomy. Luckily it was a super quick presyncope but it was enough to get me to the dr! I was given a stress test and eventually told that it was probably a fluke - brought on by the run and maybe dehydration. Over the next week I was dizzy, there was ringing in my ears, off balance...you know the drill. The dr sent me to a cardiologist who was familiar with POTS and saw the connection right away. I had a tilt table test and was dx within a month. I started treatment but it took months to get the drugs right enough for me to function pretty well. MEANWHILE, I live in a town with TONS of Lyme disease. Our rates are as high as Lyme CT. When I got sick I immediately thought of this. I spoke to lots of friends and neighbors who encouraged me to pursue the Lyme issue. When I asked my drs about this I was given the basic Lyme test but now I understand that test is very very unreliable. I asked for further testing but was told that I didn't need it. Within a few months of the POTS dx my interstitial cystitis returned worse than every. My hormones were tested and we discovered that I was totally in menopause (ovaries never worked post hyster). A Ha, I thought we had solved the mystery. Maybe the crash through menopause I had been the underlying cause of my POTS. This along with just being sick and tired made me give up the Lyme question. The past 3 years have been a struggle, I have good days and bad months. I can work part time, take care of my family and exercise but I have fought hard to be able to do that. Some days I am curled up in a ball by dinner time. So fast forward to this summer. My daughter was dx with Lyme. The dr treating her asked about me (family history). One thing led to another and I was taken on as a patient and just two weeks ago got the word that I have Lyme. I am sure some of you know but Lyme testing and treatment is very controversial. The dx is made by looking at many factors, especially when you don't have a raging fever or rash. The testing looks at antibodies and there is definately differences of opinion about what is a positive test. If you need info on that message me directly. Anyway, I cried for 1/4 of a second and then said all right let's treat this and see what happens. Maybe I will get better - maybe I won't. Maybe I eventually would have gotten worse (a poor brain scan was part of the dx). All I know is I am on a new path and I wanted to share it with you because there might be others of you out there with Lyme. I know, I know, there is so much crazy info about Lyme. But check out the movie Under our Skin from you local library and just think about it as a possibility. Interstitial Cystitits can be caused by Lyme too - or so some think. I will keep you all posted on how treatment affects me.

One other thing - I have been taking Concerta for the past 6 weeks and it is definately a boost to my energy. I can last longer in the day and into the evening. My kids hate it because I am still up and on their case well into the homework hour!!

So...what will 2010 bring??

Lina

[abbriggs]

I too am on this path. LymeNet has alot of helpful information.

http://flash.lymenet.org/scripts/ultimatebb.cgi

I feel better while I am on antibiotics.

Mandi

[juliegee]

My son's being treated for Lyme now too. Out of curiosity, what antibiotic & dosage are you taking? How long did you take it? Did you start feeling better right away?

Lina, I'm also a runner- relatively (6 months) new to me. Are you well enough to run now? How much do you run?

Thanks-

Julie

[scarfgirl]

I'm as leery of Lyme diagnoses as I am of the Candida dx that is going around a lot right now. I'm not saying Lyme disease doesn't exist, I've known people who had it, but I don't buy this 'chronic' Lyme in people who never had the acute version, test negative on the standard test, and can't even recall ever being bitten by a tick.

I admit I feel better when I start antibiotics, but no amount ever makes my symptoms go away for good, and after a while the side effects from so much antibiotic use start outweighing any benefits I was getting.

Regardless of my personal opinion, I wish you the best of luck and hope you continue to feel better. Please do keep us posted as you progress through treatment.

[runningshoe]

It is good to be leary but I have good cause to proceed. I live on a street less then a mile long and over the past three years there have been numerous cases of Lyme. These were cases with the rash and the positive test. Two of my kids included. That is just my street. The town is full of similar stories. I have had many tick bites over the years. I also took my time with this dx. The dr is a neurologist who trained at the hospital where I had my tilt table test. Furthermore, she is not claiming that I have chronic lyme. She believes I will improve. I had a blood test called a cd 57 done and it measures your immune response to lyme. You should be over 100 - I am at 30. This means my body isn't fighting the lyme so well which means I am not makeing antibodies which is what the test looks for. But, I did have some positive bands on the Western blot. Some scientist believe that those bands shouldn't be there if you don't have other infections or virusus (which I don't). So looking at all of this together, I made the decision to proceed with treatment. I am super conservative when it comes to trying new things. I will keep you posted!

[MomtoGiuliana]

I am leery of the diagnosis of chronic Lyme too and a little concerned that it may be over-diagnosed. Some of the methods of diagnosis and treatment are not (yet) supported by peer-reviewed research. It's a new disease. However, I think in cases where someone is very sick and disabled and many other options for treatment eliminated, it makes sense to try this treatment (long term antibiotics). I am pretty sure I would.

I've had a few friends with very minor (compared to what people on DINET experience) symptoms get diagnosed with chronic Lyme with no memory of bite, no rash, no fever etc. Apparently these days some chiropractors diagnose Lyme disease. I personally question their decision to go through with treatment (which fortunately did not harm them, but was also inconclusive as to whether it helped improve the symptoms).

I also have a few friends who spend a good deal of time outdoors due to their work, and have had multiple deer tick bites, rashes, fevers and longer term fatigue and other problems, and repeat positive standard Lyme blood tests and repeat treatments with antibiotics. It is not a disease to fool around with.

Hopefully soon it will be better understood.

[juliegee]

I have shared this previously, forgive me for repeating myself... I just wanted to throw it out there, that Dr. Peter Rowe, who runs the peds Chronic Fatigue Clinic at Johns Hopkins is also jumping on this band wagon. He is treating my son (and many of his patients!) with antibiotics to combat lyme, OR another similar infection (that we can't test for), OR to treat inflammation. He isn't sure WHY it's working, but it is. Many of his patients are having great success. My son is on his 4th month and is slightly improved. I wish I could report better results...

I appreciate everyone's skepticism. But if Johns Hopkins is recommending it, I'M going for it. Mack takes high doses of probiotics to protect/add good bacteria to his GI tract. This isn't a lifetime treatment, but an opportunity for my son to get better. We're gladly giving it a try and feel grateful to have a doctor who is willing to experiment with ALL treatment options.

I had previously asked: What type of antibiotics others are taking & what dose? I also wondered how long you were treated for & when did you start to see benefits (if you did.) I'd appreciate any responses.

Thanks-

Julie

[MomtoGiuliana]

I remember you letting us know about John's Hopkins efforts. That's great that good results are being seen. I hope someone is studying this and will be able to publish results that would be helpful to other practitioners.

I agree that if JH were recommending trying it, and I were disabled by my condition, I would.

I think experimental treatments are very individual decision based on evaluation of potential risks and benefits.

[Guest tearose]

The pros and cons from my personal experience...

I got a rash, swelling and pain in summer 1991, then fever and flu like symptoms with back and neck pain but it wasn't the typical lyme presentation so it was assumed an allergy followed by a summer virus. By the fall, I was so much worse. I found a LLMD and went. I was in fact found to have a borderline positive Gundersun lyme test so I started oral antibiotics. We tried many kinds and I started to become allergic. I wound up on IV rocephin twice a day and finally started seeing symptoms relieved. I was on the IV with picc line for 6 weeks. My body had some improvement, not the swelling but some cognitive function and I became allergic to the picc line.

I still had the swelling and also fast irratic heart issues and the LLMD sent me off to Mayo, MN. They said I had lymphedema secondary to whatever I had had. "Maybe lyme, maybe erlichiosis or maybe some other virus..." Mayo said in defense of the offending bug, my body damaged the lymphatic channels to kill what ever the offending bug had been. I am glad I was able to do some IV rocephine but it never took away the lymphedema damage though and I have to manage my arm and leg every day. The POTS was not healed by the IV rocephine. I developed major antibiotic allergies since then. I can only use a couple now. I do understand that antibiotics act like "anti-inflamatories" in our body and I do feel different/slightly better when on Biaxin for a sinus infection for example. I personally do not believe or feel I have chronic lyme. I believe I have permanent damage however.

A neighbor who had nearly exactly the same presentation as me and did nearly the same treatment wound up much worse. She chose to do gammaglobulin after coming off IV and wound up in a nursing home and later passed away. Her immune system had completely shut down.

It is one of those serious choices each individual has to grapple with. The doctors may offer treatments but it is ultimately the individual who has to live with the benefits or consequences.

I wish you only good results with the antibiotic treatment!!!

sincerely,

tearose

[juliegee]

Thanks for sharing your story, Tea. Wow! I hate that you didn't get a better result. Help me understand your story better. Clearly, your sensitivities/allergies seem to have resulted from your exposure to antibiotics. But do your doctors think the damage and lympedema also came from using antibiotics?

I hear that you don't think you ever had chronic Lyme. Dr. Rowe doesn't think that Mack does either (due to his history- symptoms way back to infancy), but he still wanted to try the antibiotic therapy because it's inexplicably helping so many ANS patients. Do you think you had an infection similar to Lyme? OR do you think your POTS is caused by something else entirely?

Mack is using minocycline orally, just 100mg a day. I asked Dr. Rowe about patients that use IV antibiotic therapy. He said that's reserved for patients with very severe symptoms. Mack's aren't (I guess ) - just lightheaded, fatigue, trouble eating, etc. I hope his risks are less with a smaller dose....

Thank you again. I'd love to hear anyone else's experiences.

Julie

[Guest tearose]

Okay, more clarity...

As the doctor explained to me, the lymphedema came from my body "killing" the offending bug. This serious immune response is like our body at war. To kill the bug it also permanently damaged my lymphatic system.

The allergic reaction did NOT cause lymphedema. The allergies most likely came from my low immune system being bombarded with many antibiotics and probenicid over several months on top of the ANS dysfunction that started to blossom.

I do know I was infected with something because of the rash, swelling, fever, sweats, lethargy, cognitive loss...and I think it was a yet unknown bug like ehrlichiosis. I feel I was one of the early "guniea pigs" so to speak that prove the value of treating right away with IV antibiotics in certain cases. Now they hospitalize people with ehrlichiosis until they improve.

I suffered ANS dysfunction AFTER the bite and lymphedema.

I truly think it would have been a lot easier on my self esteem and doctors if I "blamed" my problems all on chronic lyme. I am glad I trusted myself and pursued more information.

It was difficult but my medical team managed to keep separate the lymphedema from the dysautonomia because they are different and need different treatment. Even IF the first cause cascade of progression is never 100% understood I have been able to treat my symptoms and manage some good quality of life.

I hope that helps...

tearose

[flop]

Just to add to the extended antibiotic treatment, I have joined the club.

Last time I saw my ENT specialist (for daily nosebleeds, allergies and recurrent sinus infections) he advised that I try taking Clarithromycin 250mg twice daily for 6 weeks (Klaricid). He said that there was a yet unexplained anti-inflammatory property to extended antibiotics and he hoped that it might reduce the inflammation in my nasal passages.

The ENT doctor knows nothing about POTS so this treatment is purely aimed at my nose but I hope that it may have a positive effect on the rest of my body too.

I am only on the third day of antibiotics (and currently have an acute sinus infection) but I will let you know how I get on with them.

Flop

[juliegee]

I'm on extended antibiotic therapy too...for rosecea, only 50mg doxycycline daily, BUT it has helped with my overall symptoms. I know many of us report better overall functioning on antibiotic therapy. Dr. Rowe was VERY intrigued with my antibiotic experience and asked me oodles of questions.

Like Tea, I also have very low immune function, IgG is slightly over 500 (750-1,500 normal range.) I hope the antbiotics aren't worsening that- new thought?!?

I also take daily probiotics to counter the negative effects of the ant-B's.

Thanks everyone for sharing your experiences. I'd love to hear more & learn from everyone.

Julie

[runningshoe]

Hi

I am glad to see all the discussion around this topic. I think that the lyme field is not well understood and I am hopeful that research funds will start to get the ball moving.... My dr said that since I have a dysautonomia it is important not to overwhelm my body with too many antibiotics. I could be taking a cocktail but the concern is an extreme flare of symptoms. As the bacteria die off you can have such flares. Since our symptoms aren't ones that are easy to manage when they flare - I am taking it slowly. I wonder if this was part of the issue with Tearose?? Not sure. I might try the iv meds next month but it would be once daily. I am on doxy 100mg 3 times a day. I am taking probiotics as well. So let's think of me as an experiment. I have a classic case of POTS. I fit the age range and am female, like so many POTS patients. I was very healthy prior to this, other than hyster stuff. I don't drink, I eat well, I exercise, I have a good body weight, a healthy heart.... So there aren't many other factors to complicate the issue. My POTS was well documented by my tilt table. I tend to get POTSY very quickly when I stand (if it is coming on). My POTS is well managed by my meds and salt but the underlying blood flow issues are still there. My heart doesn't race but the blood pools and I vasoconstrict and look like a pink road map. A couple of hours of this can make me very tired. I can feel the lack of blood flow in my head. So I guess my point is that I don't have a lot of other immune issues going on and my symptoms are very visible to me so it will be interesting to see what effect this will have. It has been 3 years and the POTS is not resolving itself.

So right now I might start to feel better, or have a flare or nothing at all. I will keep you all posted. (Have been pretty POTSY but was super busy around xmas).

macksmom - I don't run much. Occasionally I start to feel well enough to start up but it doesn't last. My bladder doesn't appreciate it much either. My goal is to run the trails of my town again with my dog (and tick spray on my legs!!). We will see. The runningshoe name just reminds me of the freedom I felt before this (running track was a big part of my life and running since kids was therapy). I walk a lot though and that helps. I can last for about 30 minutes.

I wish you all the best in 2010!

[juliegee]

I appreciate hearing your story, Lina. And, I can relate to the bladder issues with running . I am relatively new to it and my bladder isn't happy either. So frustrating. I set a PR for my timed mile recently and inadvertently wet my pants doing so My bladder completely emptied without my consent Grrrrrr. In the summer I can easily wear protection with running shorts, but I usually wear running tights (several pairs) in the winter and there's not a lot of room to hide anything. I under hydrate- not good- and cross my fingers for now. I pray you'll be well enough to run again soon. I'm coming back from an injury and having a hard time myself.

I hope the Lyme treatment is a success and would love to hear about your progress with it. Post and let us know from time to time.

Julie

[abbriggs]

I do not have a Lyme Diagnosis. I am seeing an LLMD at the end of January. I have alot of neurological symptoms to go along with POTS. I developed and essential tremor, muscle twitches. muscle cramps, neuropathy. I grew up on a bunch of land. Hunting, having horses, cows, goats, pigs you name it. I have pulled more ticks out of me than I can count. Not everyone gets a rash. There are also coinfections that you can get from ticks as well as fleas.

There are also certain essential oils that are antibacterial. I have read about people using essential oils internally. This has to be done with great care. They must be pure organic essential oils with no additives or other ingredients from a company like Young living (very expensive) or Rocky Mountain Oils (much cheaper and just as good). And not purchased for your corner drug store. They can be dropped in a liquid and drank. placed under the tongue or put in a pill capsule and swallowed.

When I actually get to work I am an Aesthetician and I have seen what they can do for the skin. I know the effects that they can have on helping one sleep. there are some that can help the endocrine system and balance hormones. because they cross the blood-brain barrier, can really help with neuropsychiatric symptoms. Many oils can help with brain fog, depression, and anxiety.

This is kinda just me thinking out loud. But I thought that I would throw this information out there. It is something that I am going to give a try.

Mandi

[scarfgirl]

I grew up on a bunch of land. Hunting, having horses, cows, goats, pigs you name it. I have pulled more ticks out of me than I can count.

LOL. I can remember as a kid visiting with my grandmother and every time my brother and I came back from playing in the woods we had to strip down so my grandma could check us for ticks.

Like I said before, I'm skeptical of the chronic lyme thing, but I am VERY interested in figuring out why antibiotics make a lot of us feel better and what that could mean. I'm glad John Hopkins is looking into it and I hope they find something interesting. I already have to take antibiotics whenever I get sick (doesn't matter what the sickness is) otherwise I never really get better.