Three years Stage 3 slmo bio

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
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slmo
Posts: 8
Joined: Tue 10 Apr 2012 17:31

Three years Stage 3 slmo bio

Post by slmo » Tue 10 Apr 2012 17:52

I filled out the following bio for the support group in my State.

Name?
• Sariah
Location?
• Washington
Do you need to be connected with a Lyme Literate Doctor (LLMD)?
• Yes
Is Lyme a diagnosis or diathesis (diathesis = suspicion)?
• Diagnosis
Do you have or suspect any co-infections?
• Confirmed Osteoarthritis. I suspect Lupus or immune issue, worsened arthritis, cognitive decline, possible bacterial infection in spine and neurological damage.
If diagnosis, when?
• August 2009
Was any testing done to back up the diagnosis?
• Tick bite site was in my armpit. My doctor asserted the small rash was an allergic reaction to deodorant or laundry detergent. He sent me home with no testing or treatment.
• Two weeks later, I went in with severe joint pain and a bulls-eye rash, which had grown from the size of a dime to an ellipsis that wrapped under my armpit and over my shoulder, as a purse strap would. The doctor noticed that it put off heat and was growing, but still believed it was an allergic reaction. He gave me Tylenol-3 for the joint pain and told me to “stretch out my arm and do circular exercises” to alleviate the shoulder, neck, jaw, et al, pain.
• A few weeks later, with debilitating symptoms and now a double bull’s eye rash, the “purse strap” form was larger, and I had another bull’s eye wrapped around my torso- picture a cinched belt around my ribcage. The doctor ordered blood work and an MRI to assess why my lymph nodes were so swollen. Five minutes after I left the hospital, the radiology department called me back to re-administer the MRI because they could not believe their eyes. The radiologist suspected Lymphoma because I had countless swollen glands and extremely abnormal white blood count.
• A month later, I was visiting family in Oregon and the pain was so severe I was screaming in to my pillow and thrashing around in bed all night. My grandfather worked for the Forest Service for several decades and suspected Lyme’s. At the ER, I was administered an EKG. I asked the doctor to test for Lyme’s based on grandpa’s suggestion. He agreed and took blood for a Lyme’s test. He prescribed Doxy just in case and referred me back to my GP. Blood work results a few days later were positive; I think they used Western Blot.
What symptoms do you have?
• My body and mind have never been the same after Lyme’s diagnosis and 30 days of “treatment.” I have extremely severe pain in the joints around my shoulders, arms, chest, back, and hips. The osteoarthritis I had for several years before Lyme’s is now debilitating. Some days I cannot move due to pain, malaise and dizziness. I frequently experience tinnitus and pounding headaches. My body requires weeks to fight infections that should clear up in a few days. Cognitively, I am experiencing memory, concentration, and processing speed decline. I “lose words” and forget what I am talking about mid-sentence. I experience a racing heart intermittently; I bought a $40 BP and Pulse cuff because I could feel my heart racing. My BP is always low to normal, but pulse very high. The most recent reading for example was 124/84- pulse 131. Other anxiety symptoms such as flushed face, and bumpy rashes on my arms, chest, legs, and scalp have squelched my social life.
Where (in the world) do you suspect the infection is from?
• I suspect that I got the infection in California. My family and I travelled from NW Washington to San Diego and back by car over a period of two weeks. We camped the entire two weeks all along the Washington/Oregon/California coasts. We went to the Redwood Forest National Park among other known Lyme endemic areas.
How long did it take to get a diagnosis since infection?
• Minimum three to six months; I never found a tick.
Are you undergoing any current treatment?
• Not for Lyme’s per se. I see my current doctor regularly for joint pain. He referred me to a psychiatrist as well who prescribed Zoloft for panic disorder/PTSD.
How do you feel today?
• In a word, terrible. For the last month, I have experienced severe intestinal issues. At the same time of the intestinal upset, I started to experience a jabbing pain below my left breast. The pain has progressed to both shoulders, neck, face, head, hips and spine. In the last two weeks, I have been to my current doctor twice and the ER twice, most recently today for both. Throughout those visits, I submitted stool, blood, and urine. I was on 2 different antibiotics 5 times a day for the diarrhea. They were ineffective for the latter issue. The stool and urine tests came back normal. I am waiting on additional blood tests. I also had a chest x-ray last week and a CT scan this evening, both of which showed nothing. I am developing rashes on my legs, face, and between my fingers. Fatigue has riddled my life as well.
What interests you outside of Lyme?
• I am mother to twin boys, who I adore and love to spend time with. Nothing would make me happier than being mentally and physically capable of giving them 100% of my time and devotion.
• I am a Graduate student earning a Master’s in Psychology. I would like to pursue a PhD in Transpersonal Psychology afterward.
• I love to read, study philosophy, and learn about world cultures. My dream is to travel as much as possible.
• My family includes five siblings, two nieces, two nephews, my “baby daddy” and my mother, who all make my life richer.

Camp Other
Posts: 996
Joined: Wed 2 Mar 2011 4:32
Contact:

Re: Three years Stage 3 slmo bio

Post by Camp Other » Thu 12 Apr 2012 2:08

slmo wrote:I filled out the following bio for the support group in my State.
Where? I'm assuming on another site. I don't think we have such a bio request section here... unless I missed something.

It's great to get more info about your story and compare notes... I hope someone here can help you out.
Was any testing done to back up the diagnosis?
• Tick bite site was in my armpit. My doctor asserted the small rash was an allergic reaction to deodorant or laundry detergent. He sent me home with no testing or treatment.
• Two weeks later, I went in with severe joint pain and a bulls-eye rash, which had grown from the size of a dime to an ellipsis that wrapped under my armpit and over my shoulder, as a purse strap would. The doctor noticed that it put off heat and was growing, but still believed it was an allergic reaction. He gave me Tylenol-3 for the joint pain and told me to “stretch out my arm and do circular exercises” to alleviate the shoulder, neck, jaw, et al, pain.
Your experience with your EM rash is similar to my own. I had a small rash around my bite site, the doctor said it was only an allergic reaction and gave me a script for one dose of doxycycline and told me that should protect me. The doctor was wrong, btw - it was already too late to give me the prophylactic dose to prevent Lyme disease since too many days lapsed since I had the bite.

And my EM expanded into an angry red raised oval, concentric darkening rings, but without a central clearing. (I've since learned the central clearing is more common in Europe than in the US.) I also got really painful muscles and joints and had trouble lifting my arms above my head for any length of time.
• A few weeks later, with debilitating symptoms and now a double bull’s eye rash, the “purse strap” form was larger, and I had another bull’s eye wrapped around my torso- picture a cinched belt around my ribcage.
If there is more than one EM rash, that's a sign of disseminated infection. According to Dr. Jorge Benach, that is now treated with IV or parenteral antibiotics. Oral antibiotics are thought not to be adequate treatment, even by conservative standards.
The doctor ordered blood work and an MRI to assess why my lymph nodes were so swollen. Five minutes after I left the hospital, the radiology department called me back to re-administer the MRI because they could not believe their eyes. The radiologist suspected Lymphoma because I had countless swollen glands and extremely abnormal white blood count.
• A month later, I was visiting family in Oregon and the pain was so severe I was screaming in to my pillow and thrashing around in bed all night. My grandfather worked for the Forest Service for several decades and suspected Lyme’s. At the ER, I was administered an EKG. I asked the doctor to test for Lyme’s based on grandpa’s suggestion. He agreed and took blood for a Lyme’s test. He prescribed Doxy just in case and referred me back to my GP. Blood work results a few days later were positive; I think they used Western Blot.
From day one you had all the evidence you needed that you had Lyme disease. I am sorry that the first doctor you saw misdiagnosed you and did not treat you there and then. That set you back.

What symptoms do you have?
• My body and mind have never been the same after Lyme’s diagnosis and 30 days of “treatment.” I have extremely severe pain in the joints around my shoulders, arms, chest, back, and hips. The osteoarthritis I had for several years before Lyme’s is now debilitating. Some days I cannot move due to pain, malaise and dizziness. I frequently experience tinnitus and pounding headaches. My body requires weeks to fight infections that should clear up in a few days.
Your symptoms sound similar to mine, except I had zero arthritis before I was bitten by a tick. My joints and muscles were normal pre-bite. But I did have extreme severe pain during the first six months after my tick bite, and was on antibiotics during most of that time. It only began to noticeably back down after about 8 months.

Today I have moderate pain and occasional severe spikes of what seems to be nerve-related pain or radiculopathy. I have tinnitus and a constant headache - both vary in intensity. And I have the same experience with infections.
Cognitively, I am experiencing memory, concentration, and processing speed decline. I “lose words” and forget what I am talking about mid-sentence. I experience a racing heart intermittently; I bought a $40 BP and Pulse cuff because I could feel my heart racing. My BP is always low to normal, but pulse very high. The most recent reading for example was 124/84- pulse 131. Other anxiety symptoms such as flushed face, and bumpy rashes on my arms, chest, legs, and scalp have squelched my social life.
All of this sounds very familiar to me. I could have written this. The one saving grace of being online is that if I forget a word mid-sentence, I can regroup and continue what I'm writing without anyone else noticing. In person is a different story...

I spend much of my time online and lying down because I'm not feeling great, either. My social life is a fraction of what it used to be, but I am fortunate friends come to visit me and occasionally I manage to make it out of the house for brief periods of time.

Where (in the world) do you suspect the infection is from?
• I suspect that I got the infection in California. My family and I travelled from NW Washington to San Diego and back by car over a period of two weeks. We camped the entire two weeks all along the Washington/Oregon/California coasts. We went to the Redwood Forest National Park among other known Lyme endemic areas.
Very possible. Northern California and on up to Washington is endemic for Lyme disease. CDC says Northern CA is highly endemic in particular. If one looks at the records for specific counties and Dr. Robert Lane's surveillance studies, some counties in Northern CA have as many infected ticks as highly endemic Connecticut counties do.
How long did it take to get a diagnosis since infection?
• Minimum three to six months; I never found a tick.
I had the tick that got me. I know exactly when it happened.
Are you undergoing any current treatment?
• Not for Lyme’s per se. I see my current doctor regularly for joint pain. He referred me to a psychiatrist as well who prescribed Zoloft for panic disorder/PTSD.
What does your doctor give you for joint pain? Does it help at all?
How do you feel today?
• In a word, terrible. For the last month, I have experienced severe intestinal issues. At the same time of the intestinal upset, I started to experience a jabbing pain below my left breast. The pain has progressed to both shoulders, neck, face, head, hips and spine. In the last two weeks, I have been to my current doctor twice and the ER twice, most recently today for both. Throughout those visits, I submitted stool, blood, and urine. I was on 2 different antibiotics 5 times a day for the diarrhea. They were ineffective for the latter issue. The stool and urine tests came back normal. I am waiting on additional blood tests. I also had a chest x-ray last week and a CT scan this evening, both of which showed nothing. I am developing rashes on my legs, face, and between my fingers. Fatigue has riddled my life as well.
I'm sorry you are feeling so terrible. I've been to the ER a number of times and it is seldom useful. I don't think the ER staff knows how to deal with people who have or have had Lyme disease and it still affects them. They're trying to deal with what they think is an acute problem - which your symptoms are when they become acute - but the underlying issue is ongoing and that's not what they are equipped to handle. Someone has to be aware of the long term implications of your condition and work with it in order to make headway, I think. ER is good for making sure nothing life threatening is going on. But something non-life threatening sure as hell can cause a lot of misery.
What interests you outside of Lyme?
• I am mother to twin boys, who I adore and love to spend time with. Nothing would make me happier than being mentally and physically capable of giving them 100% of my time and devotion.
Good to hear you have kids you adore and get along with. I hope someday you get better and can spend more time with them in ways you currently haven't been.
• I am a Graduate student earning a Master’s in Psychology. I would like to pursue a PhD in Transpersonal Psychology afterward.
How are you managing school around this? Are you taking online classes or do you show up in person?

• I love to read, study philosophy, and learn about world cultures. My dream is to travel as much as possible.
That's me. Before Lyme hit, I traveled a lot and planned to travel more. I've managed to make a few trips during periods when I have been less symptomatic but it's never been the same since I was bitten. I am exhausted by travel and crashed out by the end of the trip even if I do make it...

I'm sorry you have had to go through all this. It's probably not any consolation that others reading this can relate to what you've been through and have had similar experiences themselves - but at least we can understand where you're coming from. I really hope you can find a doctor and treatment that can improve your quality of life and help you get better. Right now, I am wondering what is next for me because I feel like I have hit a wall with my own treatment.

slmo
Posts: 8
Joined: Tue 10 Apr 2012 17:31

Re: Three years Stage 3 slmo bio

Post by slmo » Mon 16 Apr 2012 3:32

Hello fellow happy camper,
Thank you for the reply; tears came to my eyes when you mention that I am not alone. I am new to the “support group” setting, so bear with me. Oh, and in advance, I 100% agree that these forums save us; I cannot speak clearly without stuttering now, but my mind is sharp as a tack. The following replies are to your wonderful and insightful comments.

-The bio is what I submitted to my local support group. Found this one due to serendipity.
- Our EM and body symptoms are indeed similar. During this, my current and worst relapse, I cannot lift my arms or drive.
*Do you experience recurring pain at your EM site?

-Thank you for the referral to the study; I will check it out. As well, my college library has a database with current peer-reviewed pathology and medical studies from around the world. Your local library might have such a database as well.

-I get no treatment. The latest doctor told me that it was all in my head this week. So I switched GP’s. The pain is unbearable. I am on the verge of screaming at all times.

I do not have a Lyme doctor yet. My state is very anti-Lyme. Every single doctor I have seen (other than the one that eventually diagnosed me) has told me symptoms are psychological.

The twins are scared, but I keep them in the loop so to speak. They ask questions about the disease, I try each day to spend time with them, but their eyes get very big when they see I cannot stand, am shaking, etc. I do not want to scare them, but am not going to stop spending time with them. * How do you and your family handle the fear factor?

-I attend college online. Last week I submitted the appropriate paperwork to go on a leave of absence. Through two degrees I have maintained straight A’s with a few B’s littered in when I feel sick. I have never taken a break from school but hey, if I cannot see, read, hear, or walk then I suppose that is a good enough excuse.

Thank you for sharing personal stories such as how you lived before Lyme hit. It helps to gain strength from one another; we will live those freedoms again.

Margarita
Posts: 56
Joined: Sun 2 Oct 2011 22:05

Re: Three years Stage 3 slmo bio

Post by Margarita » Wed 18 Apr 2012 20:55

slmo, are you on any antiobiotics right now?

slmo
Posts: 8
Joined: Tue 10 Apr 2012 17:31

Re: Three years Stage 3 slmo bio

Post by slmo » Wed 18 Apr 2012 23:02

Hello,
No I am not on antibiotics. My GP gave me prednisone. He did not come within a yardstick of me when I went last week. My eye was full of yeast, I am shaking like a leaf, pain pain pain, cannot see or drive. He told me "Lyme's doesn't do that" and sent me away. I switched my GP to an internist but cannot see him until next month. I am more or less freaking out. Don't ask me how I know, but I feel like I have eaten a sugar cube with special drops on it.

My shrink put me on risperdal, which I take twice a day. As well, I went to the health food store and purchased natural antibiotics to try and fight this.

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