Support for those with Tick-Borne Infections

Hi!

I know this is long and it's also x-posted everywhere I could think of. I'm desperate. Thank you for reading.

I got sick last january (2011). I started getting extremely tired, falling asleep in class, sleeping all day, having troubles being awake more than a few hours. I also felt really light headed and dizzy a lot. I'd be nauseated and have diarrhoea. Around March I could be up for about 2 hours before I had to go lie down again. When I overtaxed myself, by doing really "simple" things, like having a doctor's appointment or going to a class, I'd experience "attacks" or episodes (I haven't been able to figure out what to call them) of extreme fatigue, it'd feel like someone very suddenly injected me with a large dose of tiredness, coupled with light headedness and shaking. My eyes would water and my vision blur (whether from being so extremely tired or a separate symptom, I don't know). My body would feel heavy, it'd feel like I really really didn't want to move. However, I could move, if I focused, I wasn't paralyzed, I'd also get an.. uncomfortable feeling in my body, like I was being squeezed and compressed? This is really difficult to explain.

In February, I saw a GP for the first time. They started running tests, which all came back normal. I saw three different GPs before I was referred to an endocrinologist because my cortisol levels were quite low. The endo put me on Hydrocortisone and also put me on sick leave (this was in May and I had barely been able to finish my courses, thanks to very understanding teachers and a mother who at times had to read out loud to me from the course literature). Initially, after the hydrocortisone and the sick leave, I got a little better. I was off sick through the summer and the plan was that I would continue my studies in August, now on practical training. I was skeptical, but hopeful.

I started placement at the end of August, but after about a week or so, I started doing really badly again. I pushed on, hoping that it would get better, but after about two weeks of not being able to be there much and the return of all my symptoms, I contacted the endo and he once again put me on sick leave. He consulted another specialist who deals solely with cortisone problems and it was decided that since I was still so ill and had had no improvement of the cortisone, I would slowly come off it. (I did and have noticed no difference).
More tests were done, among them a Vitamine D test, which showed that my levels were very low and I was put on supplements.

Slowly, I got a little better during the fall when I was on sick leave. I'd be able to be up for more hours, not have as many "attacks" etc.

The endo also referred me to do a gastroscopy to see if I had celiac disorder as well as to see how my body deals with nutrients (I think). I've gotten the results and it was all normal.
They also noted that my PTH levels were a bit high and explained that this could be because of the Vitamine D deficiency and that we will monitor it for now.

Last spring I also saw a neurologist and did a MRI scan of my brain. I have also seen a sleep specialist and done a sleep study and a MLST. They've surmised that I don't have narcolepsy (which makes sense since I don't actually fall asleep suddenly) and that the MRI scan was clear. I have Delayed Sleep Phase Disorder.

Now I have once again started university, hoping that I would be able to do it this time. It's the second week now and I'm already feeling the return of the symptoms. Extreme fatigue, I kept nodding of in class yesterday, I've had "attacks", I'm nauseated, dizzy etc.

I have a phone appointment with my GP on friday. I don't know yet if I am going to ask to be put on sick leave again. I really don't want to, I love studying. But I feel like crap.

The symptoms get worse when I'm active. They get worse if I go to class or coffee with friends or an appointment. They get worse when I try to focus and concentrate. If I'm already tired, it can be completely impossible to focus on a text, especially if it's something more difficult than reading my Facebook page. I have trouble focusing and concentrating. My memory is worse. When I get tired, I slur worse and I apparently look white.

I don't know what's relevant, so I'm writing everything. I have hypothyroidism, but my levels are stable and I've asked the two endocrinologists I've seen if that could be a participating cause and they've both said no.
I have Bipolar Disorder, but again have been stable for a few years and both the psychiatrists I've seen have said that it is not the reason for my symptoms, nor is my medication (I have had many conversations about this).

All the doctors have said that the few things they have found - the Vitamine D deficiency, the elevated PTH levels, the sleep disturbances, can be pieces of the puzzle but that they don't explain the whole picture. That I shouldn't be this sick.

Please, if anyone has any ideas - no matted how far fetched - let me know. I'm desperate. I have had a lot of blood tests, so if you think of something, I'll let you know if I've had it or not. If you think of a diagnosis or cause, let me know and I will bring it up with the doctor. The one thing that keeps coming back is Chronic Fatigue Syndrome and possibly Lyme Disease. Anyone know anything about it?

I know this is long, but thank you.

Mia

I'm trying to find a llmd in nyc for a friend of mine. Preferably in brooklyn/manhattan/queens as she does not have a car. Just needs an evaluation. If anyone knows of one could you send me a private LJ message with the name and any other info about them? Thanks!

Breakspear Hospital

The truth is, I do recommend Breakspear. I will tell you the truth and see if you want to go down that path. You can read my journal entries here to find out what I have been having done at Breakspear. Although I do need to update for this year. http://www.caringbridge.org/visit/lauradunks/journal

( Read more... )

Looking for a recommendation for a good opthamologist in brooklyn/queens/manhattan. Preferably one with at least some knowledge of lyme disease. Suggestions?

update:According to one doc at Associate Ophthalmologists( http://www.eyedocnewyork.com/about_us.html ) they have many patients with lyme. So going to try there.

Name? Amy
Location? Hudson Valley, New York
Age? 31

Do you need to be connected with a Lyme Literate Doctor (LLMD)?  No, I'm seeing a specialist this afternoon
Is Lyme a diagnosis or diathesis? diagnosis
Do you have any co-infections? No, at least not that I am aware of

Was it a clinical diagnosis or a serological diagnosis? Serological
If diagnosis, when? About a week ago
What symptoms do you have? Memory loss, fatigue, muscle pain & fatigue, headache
Where (country/state/province/region) do you suspect the infection is from? Right in my back yard. :(
How long did it take to get a diagnosis since you were infected? I had found a tick on me in the shower one morning and, since I was able to pick it off with my fingers, figured it wasn't attached properly/long enough to infect. About two weeks later I had a low grade headache that, while mild, just wouldn't go away. More alarming, I was starting to have some scary memory problems. I couldn't recall conversations I just had or would find myself forgetting how to do routine things. At one point I spent five minutes on the floor staring at my 8 month old because I couldn't recall how to put pants on him. Then I got a rash at the bite spot. I went to the doctors but she said, since it was not a bullseye and itchy, that it wasn't Lyme but an allergic reaction to the tick. She basically told me the memory thing was probably due to stress/mommy brain. But she indulged me with a Lyme test. The next day the rash took on the typical bullseye pattern and the blood test came back positive.

Did you have any blood work or other testing done to back up your diagnosis? Yes. You know, I'm not sure which test. I should ask when I see the specialist. I was told not only was it positive, but it indicated I had Lyme longer than the doctor would have guessed.

Are you undergoing any current treatment?
I'm on 875 mg amoxicillin twice a day for 20 days. I'm going to see a specialist this afternoon so that might change.

How do you feel today? Tired, achy, worried. I was told that it is unlikely my son has it since he shows no developmental delays and they don't think I had it that long, but you better bet I'm going to ask a lot of questions about this to the specialist.

What interests you outside of Lyme? Hiking, reading, camping gardening.

Hi. I was wondering if anyone else has severe IBS like symptoms. ( Read me. )

 Name? Jen

Location? NYC/Dutchess County, NY, USA

Age? 24

Do you need to be connected with a Lyme Literate Doctor (LLMD)? I'd love any suggestions for doctors in NY state, hopefully ones that take insurance.

Is Lyme a diagnosis or diathesis? Diagnosis

Do you have any co-infections? I haven't been tested for any as I have yet to find a doctor extremely knoweledgable about lyme.

Was it a clinical diagnosis or a serological diagnosis? I'm not sure. The blood test results came back showing it and then I underwent a spinal tap which came back only positive for lyme and nothing else. 

If diagnosis, when? I originally was diagnosed when I was 15 but had been having symptoms since I was 11. Everyone just kept telling me it was nothing and no way was it lyme. 

What symptoms do you have? Muscle aches, joint aches -placement and severity changing upon the day, migraines, cognitive problems - unable to follow directions, inability to concentrate, no short term memory, unable to recall simple words, unable to recall grammar rules, unable to recall simple spelling, occasional blurred vision, hand tremors, weight gain, loss of appetite, depression, fatigue, feelings of extreme weakness, occasional nausea, panic attacks, occasional problems with facial muscles specifically controlling my right eye. I'm an epileptic because of lyme and since going on antibiotics, I've had two seizures after being relatively seizure free for four years. I'm not sure if that's related to the high levels of antibiotics or to the lyme.

Where (country/state/province/region) do you suspect the infection is from? Long Island, NY. Specifically Caumsett park. Its the only time I've ever been bitten. 

How long did it take to get a diagnosis since you were infected? At least four years. I was still seeing a pediatrician and she kept insisting I didn't have it, without giving me a blood test. We finally switched doctors as my symptoms worsened, got a blood test, got on doxycycline but its flared up every winter since for varying amounts of time.

Did you have any blood work or other testing done to back up your diagnosis? Blood work along with a spinal tap.

Are you undergoing any current treatment? At the moment, no. This has been the most intense flare up I've ever had and it started in January. Since then, I've been on doxycycline for a total of 5 months on and off and two different rounds of IV for one month each. My insurance will no longer cover anymore IV treatment and my latest doctor said she can no longer help me as she has no idea what to do since I'm not responding to treatment.

How do you feel today?  Aching pain in my back, legs, and hands, general foggy thinking, depressed. I take ibuprofrin with excedrin at the beginning of a migraine so I just took that. 

What interests you outside of Lyme? It used to be music, hiking, bike riding, going to the beach, reading, yoga, ice skating, cooking, writing, volunteering with animals. I've been unable to leave the house for long periods of time since January and occasionally have to rely on a cane so I haven't been able to really do anything or even go anywhere in what seems like forever. I'd love to hear any tips or advice from anyone else dealing with this! 

Name? Ashley
Location? Shelton, CT, USA
Age? 20

Do you need to be connected with a Lyme Literate Doctor (LLMD)? No, I am uninsured, and therefore sort of stuck. Looking into clinical trials, though. Free treatment, and all.
Is Lyme a diagnosis or diathesis? Diagnosis
Do you have any co-infections? I have septic arthritis in my toes and left side of my left foot due to the Lyme.

Was it a clinical diagnosis or a serological diagnosis? Serological, I think. Blood test?
If diagnosis, when? I was originally diagnosed Sophmore year of High School, about 5 years ago now. This most recent "diagnosis" came when I was injured at work and then didn't get better, no matter what. there was strange swelling, and one of the doctors at the workers comp doctor thought to test for Lyme. I told him I had Lyme, and he said it was possible it was an acute flare, or some sort of secondary infection.
What symptoms do you have? Muscle and joint aches, Septic Arthritis, and cognitive issues. I get memory loss and headaches, which are really hard to deal with sometimes, especially at work. I'm a waitress at an assisted living home and sometimes I just can't remember stupid details if I don't write them down. The memory loss has improved (lessened?) since being back on doxycycline, where before I was forgetting LARGE details like whether or not I had talked to my boyfriend in a week, when I had talked to him less than 10 hours before, to little stupid things that I just normally wouldn't forget. I'm really grateful for that
Where (country/state/province/region) do you suspect the infection is from? I have no clue. I never got a target or any of that. I'm an outdoorsy person, and go camping and rock climbing and such a lot, so it's really hard to pinpoint. I don't even remember having a tick. I've always checked myself thoroughly and never found one within a year before being diagnosed, as far as I remember
How long did it take to get a diagnosis since you were infected? I don't  know. I know that I was sore, and sick for almost 2 months before diagnosis, and they finally checked for Lyme after I tried to get out of bed and couldn't stand up anymore, no matter how hard I tried.

Did you have any blood work or other testing done to back up your diagnosis? Blood work. For both Lyme in the system and Acute lyme.

Are you undergoing any current treatment? I'm on my 3rd and final round of doxycycline, (I am uninsured and cannot afford to go back to the doctor after this) I also take www.ladybarbara.net 's teasel root tincture

How do you feel today? really sore. Strange shooting pains in my lower arms. Stupid arthritis is angry, because it rained. Glad to have found this support though. Seriously, it means so much ♥

What interests you outside of Lyme? Music, horseback riding, reading, renaissance faires, beaches and water, hiking, camping, rock climbing, running, writing.

Hey, I'm Kitty. I've had lyme for two years and have been treated for one. It really is hard, since none of my friends are dealing with it, and don't really understand what I'm going through. However, you gotta pull through, right?

They caught mine early, which I am grateful for. I'm glad that I can join this forum and get support.

On a different note, there is a video called "Under Our Skin", or something of that nature, that is a documentary about lyme disease. Those of you who have no heard of it might want to look into it. I have to links, unfortunately.

Blessed Be.
Kitty

Have you guys been to this site? It's the opposite of the incessant whining of FML. It's really....inspiring. I know we can all use some hope. 

Or in general, a disease closet- do people other than close friends & family know? Currently the list of people that know IRL fall under 30, including family members.

Hi everyone,

I wanted to point you in the direction of a Lyme Disease Awareness campaign that the facebook group 'Lyme Disease Awareness' just launched with the help of Lymelinks. (I am a moderator of the group.)

A beautiful Lyme Disease awareness necklace was designed especially for this campaign and the proceeds will benefit Jessica Stevens. She is a Lyme patient who has been paralyzed and unable to sit, walk or eat for the past 3.5 years. She also suffers from Reflex Sympathetic Dystrophy (RSD), a severe neurologic pain disorder. Jessica is currently undergoing a risky, experimental procedure in Mexico called the ketamine coma which will hopefully reduce her pain and allow her to live a more meaningful life. Jessica is a friend of mine who has devoted her life to Lyme Disease awareness and helping others (She started the facebook group which now has more than 10,000 members).

We hope that this necklace will not only help support Jessica on her path to wellness, but will also spark dialogue about Lyme Disease between patients and their loved ones.

You can view and purchase the necklace here.

You can join the facebook event for this campaign and help spread the word by inviting friends and family.

To learn more about Jessica, you can watch a short news clip about her and visit her mom's blog for the most up-to-date information.

Finally, be sure to check out the other beautiful pieces of jewelry sold by Lymelinks. They donate all net profits to Lyme Disease charities so their jewelry makes a great holiday gift! (I'm not affiliated with them in any way aside from working with them for Jessica's necklace).

-Laci

http://watch.ctv.ca/news/latest/w5-preview/#clip235297

"Critics and Lyme disease sufferers say their illness isn't taken seriously enough and the 'ignorance' and 'arrogance' of Canadian health agencies has driven them to desperation."

Can non-Canadians watch this? It's been a long time coming, but finally we have some coverage. This whole report made me cry, a little bit, for so many different reasons.

Also- twitter users-- support Lyme Disease Awareness, add a #twibbon to your avatar now! - http://bit.ly/1bEaFC

Has anyone else had white hairs appear because of treatment?

---

( Cut by a member's request, but I MUST ASK that you read ALL of the post, as was requested when the information was given out, for legal reasons. )

Anyone know any LLMDs in the Los Angeles area? I need a California doctor to co-sign for IV antibiotics ordered by Dr. Jones. (Dr. Jones is, and will remain, my primary physician.) I'm in the San Gabriel Valley, and lack a car, so transportation can be an issues. (I live by myself, but I can get a ride to most places.)

I am not sure how widespread (if at all) this is, but I had issues with this month's refill of Mepron, had the pharmacy call GlaxoSmithKline, and GlaxoSmithKline is sending me a replacement bottle, free of charge, express mail, and oh yes, without any argument. I would say this probably means there is something wrong, and given that they didn't even argue about it, I would bet I am not the only patient affected.

I have been off said problematic Mepron for three days, and my pain level has decreased dramatically. (And, yes, I do know what Mepron's side effects normally are for me - this refill includes bonus nausea, night sweats, and a vastly increased pain level.) If this also describes you since a recent refill of Mepron, I would highly suggest you have your pharmacy call GlaxoSmithKline.

Today Im feeling eh. No day is ever remotely good. I always fight with my boyfriend about breaking up. I just cant do it anymore. Hes so devoted, but I just want to be alone. This year I started antibiotics and completely spiraled down. I cant walk anymore so going places is out. I just dont know what to do anymore.
How do you deal? esp with your significant other?

Name? Di
Location? NY
Age? 22
Is Lyme a diagnosis or diathesis (diathesis = suspicion)? Diagnosis
Do you have any co-infections? mono
If diagnosis, when? had since june 06...dx dec 08
What symptoms do you have? tremors right hand&leg and neck, blurry eye, numbness, neck cracking, joint cracking, depression, lyme rage, muscle weakness, cant walk, trouble swallowing and breathing
Where (country/state/province/region) do you suspect the infection is from? ny
How long did it take to get a diagnosis since you were infected? 2.5 yrs
Are you undergoing any current treatment? yup, rocephin 2x 4 days a week) and rife on various days

How do you feel today? sad

What interests you outside of Lyme? music, tv (all I can do for now)

Hello!

I run www.lifewithlyme.net, which is both a blog of my experiences and a resource center. I write about what I go through, but I also try to write about things like medications for various symptoms and treatment--how they work, etc--supplements, alternative remedies, news articles, anything I can, while providing links to useful books, products, etc.

I'm trying to get into updating it frequently, because I know from emails I have received that it's been a helpful resource and comfort for many, but I could truly use some help.

I need people who are also willing to blog about their experiences on a semi-regular basis. (Not every day, unless you want to, but at least once a week most the time would be nice. Also, I appreciate it if you edit for spelling alone.) Other people reviewing and sharing what works for them treatment wise, both with supplements, alternative treatment, and regular medication, is useful, and someone who would just collect news links and post them with a brief summary would be BRILLIANT.

Anyone sending to me things like useful supplements, too, would help, if they don't want to actually post; you can email me at fireandarose @ ymail.com.

But really, I need people to help make this a bigger, more useful resource.

Anyone interested?

Okay guys, I need help.

I have been in a really bad state lately. Very depressed and scared. I have never been THIS depressed before and it's all because I've been having an increase in palpitations.

I'm on a beta blocker because I've had tachycardia since I was 12 years old. If I get off a beta blocker, the tachycardia gets really bad and is above 100. I cannot function that way, so I've been on a beta blocker for about three years. My palps have been really bad lately and it has scared me to the point of going back to the cardiologist and having more testing done, although I've had testing before. The 24 hour holter monitor just came back normal showing only one PVC. My cardiologist tried switching me to Atenolol, but it's been awful. Awful side effects and to top it off it doesn't help keep my heart rate under control very well. I have no idea why since it's supposed to be stronger than Toprol. Toprol has never given me any side effects, but I was just upset because I was having an increase in palpitations even though I was on 50mg Toprol.

Now I am going back to Toprol because I cannot deal with the Atenolol. It's making me MORE depressed than I was. I am at a complete loss. I'm terrified and scared. I hate the heart symptoms more than anything else because the heart is such an important organ.

I am questioning whether I should just go on an anti-depressant/anti-anxiety med and hope that helps the palps maybe? I don't know. I really have no idea what to do. Anyone else here have heart symptoms? What do you do? Any suggestions?

Thanks guys.

Does anyone ever test negative from Igenex?

Having read around I have yet to find anyone who wasn't diagnosed as having Lyme by them, and that worries me.

Somebody posted about this today in the NewYorkers LJ community so I figured I'd post a link to it here. Basically if you're under 29 and your parents have health insurance provided by themselves(not their employer) you are covered until you're 29. I think previously it was only until you were 23 and a student.

http://community.livejournal.com/newyorkers/5266412.html

Hi, all - I'm Cailin, 26. I need some help/opinions on my current situation. Long story short, I was diagnosed with lupus last year by one rheumatologist (three others did not think it was lupus, however, but had no suggestions). Regardless of whether or not that diagnosis was accurate, I suspect I may have a recent Lyme infection.

I had a positive IgM (western blot, I guess) last week, but a negative titer, negative IgG. I have very frequent muscle twitching (today it's my nose ALL DAY, but it's been finger, hand, thigh, stomach, etc.) Several months ago, I was diagnosed as having a viral infection, as I was very "flu-like" - slept for days, very high fever, etc. I work outside and got at least one tick bite every day in May and June, but I'm pretty sure none stayed on for more than 24 hours - I check myself very well. I had no bulls-eye rash, though I get other skin rashes (supposedly related to the lupus I may or may not have). I've had several periods of very stiff neck with headaches that resolved themselves after a few days. I have bad joint pain on occasion, especially in my knees, but again, I can't remember how much of that is leftover from last year. Since last year, I also have bouts of neurocognitive dysfunction, so that can't be necessarily linked to this thing either.

SO. Maybe I caught Lyme last year, or maybe I caught it this year and have lupus from last year. Maybe last year was lupus and this is a flare. The tick exposure, the flu-like illness that no one else in my house caught, and the muscle twitching, and the positive IgM are what's concerning me at the moment.

And yes, I'd love if anyone could recommend a Lyme-literate doctor in northern New Jersey that doesn't take forever to book an appointment with. My PCP is pretty clueless, though she tries to be helpful.