Going to infectious disease speialist

[chiynita]

I have been dealing with this Lyme disease for 6 months now. 4 of those months being on antibiotics.
They are not helping.
Who knows how long I had it before I was diagnosed.
I know this crap is painful. I feel like someone is pulling my body parts apart at the joints.
Knees still hurt like hell. Dr says I have mild arthritis and the pain could be made more severe from the Lyme.
UGH!! I wish someone would do something.
800 ibu isnt doing crap anymore.
Hopefully all this pain is just from the Lyme and when I go see the specialist maybe they will know what the heck they are doing. Because I think my Dr done hit his head.
Just have to wait for the blood work to come back and then my Dr is going to refer me.
Good thing is I am sober and dont plan on numbing the pain on my own.
It hurts like hell but I can deal with it enough to not be a fool.

[DesertEyes]

Good for you, Chiy. Going to get a second opinion from a specialist is always helpful. And good for you sticking to your recovery, that's awesome.

Mike

[ksos]

Chi,

If you do not mind me asking, do you know how you contracted Lyme disease? I ask, because I never knew it caused pain, for one, and number two, I contracted it around 7 years back when a red circle appeared right in the center of my chest. My MD knew I had two dogs and told us to have them tested and sure enough, there was a big, fat engorged deer tick that was on the inside of my poor dog's ear, which cause her so much itching that she also needed surgery afterwards.

I was placed on some weird antibiotic for forty days, if I recall, and it started with an "H". I never hear of it before, and I forgot the name of it now. I know that the Lyme made me so tired, though, or maybe it was the antibiotic...I just never knew that it would cause pain. Hmm. One learns something every day.

[serenityqueen]

Chiy, I can sure relate to your frustration. Before I was finally diagnosed with Lupus and RA, I went through a couple of years of Dr.'s scratching their heads, telling me that I had Fibromyagia and that I'd have to learn to deal with the pain and the other symptoms.

Has your Dr. sent you to an Internal Medicine Specialist? My Family Dr. at the time wasn't even sure what tests to run to check for RA and Lupus. I finally had to seek out an Internal Medicine Specialist and basically beg him to run specific tests that I knew my Mom's Dr. ran to diagnose her. And some tests have to be repeated several times before a positive diagnosis can be made. I had several false positives and false negatives come back before the tests all started coming back testing positive. Some diseases are hard to diagnosis for this particular reason.

Hang in there , Hon. I hate to say this, but with some diseases/illnesses such as the one's I have, I've had to learn to live with a certain amt.of pain on a daily basis. But once you're diagnosed, there are meds that can treat the disease and not just the symptoms and then the pain becomes tolerable. You know you are always free to PM me if you have any questions or just need to vent about your frustration. I'm always here for you.

Hugs and Prayers,
Judy

[chiynita]

Originally Posted by ksos

Chi,

If you do not mind me asking, do you know how you contracted Lyme disease? I ask, because I never knew it caused pain, for one, and number two, I contracted it around 7 years back when a red circle appeared right in the center of my chest. My MD knew I had two dogs and told us to have them tested and sure enough, there was a big, fat engorged deer tick that was on the inside of my poor dog's ear, which cause her so much itching that she also needed surgery afterwards.

I was placed on some weird antibiotic for forty days, if I recall, and it started with an "H". I never hear of it before, and I forgot the name of it now. I know that the Lyme made me so tired, though, or maybe it was the antibiotic...I just never knew that it would cause pain. Hmm. One learns something every day.

I dont remember getting bit. I never had a rash. I just know I started having alot of pain last november and wasnt diagnosed until February.
I never knew it could be this bad either.
I did 40 days of amoxicillin then the pain came back. Then I just got done doing 28 days of doxycycline. Both antibiotics.
The pain went away at first but comes back in a few weeks.
It is crazy. I must be in late stages.
Heres what I found on wikipedia.


Symptoms
The Lyme disease bacterium can infect several parts of the body, producing different symptoms at different times. Not all patients with Lyme disease will have all symptoms, and many of the symptoms can occur with other diseases as well.

One early sign of infection is a circular rash called erythema migrans or EM, which occurs at the site of the tick bite. The rash, sometimes referred to as a "bullseye" rash, expands over a period of several days, reaching up to 12 inches (30 cm) across. Most EM lesions remain red throughout or are redder in the center. Only 9% of EM lesions exhibit the central clearance of the classic bull's eye appearance, however.[5] The rash may be warm but is not usually painful. Some patients develop additional EM lesions in other areas of the body after several days.

It is important to note that the EM rash, though considered a "classic" sign of Lyme disease, occurs in less than half of all patients. .[6]The disease can progress even in patients who do not develop the rash. Patients may also experience flu-like symptoms of fatigue, chills, fever, headache, muscle and joint aches, and swollen lymph nodes. In some cases, these may be the only symptoms of infection.

If left untreated, the infection may spread to other parts of the body within a few days to weeks, producing an array of discrete symptoms. These include loss of muscle tone on one or both sides of the face (called facial or "Bell's palsy), severe headaches and neck stiffness caused by meningitis, shooting pains that may interfere with sleep, heart palpitations and dizziness caused by changes in heartbeat, and migrating joint pains. Some of these symptoms may resolve, even without treatment.

After several months, untreated or inadequately treated patients may go on to develop severe and chronic symptoms affecting many organs of the body including the brain, nerves, eyes, joints and heart. Shooting pains, numbness or tingling in the hands or feet, problems with concentration and short term memory, severe weakness, vision problems, intolerance to sound and touch, vertigo, back pain, heart block, psychiatric disorders, and swelling of joints are just some of the myriad disabling symptoms that can occur.


Common bullseye rash pattern associated with Lyme Disease.
Characteristic "bulls-eye"-like rash caused by Lyme disease.The incubation period from infection to the onset of symptoms is usually 1–2 weeks, but can be much shorter (days), or much longer (months to years). Symptoms most often occur from May through September because the nymphal stage of the tick is responsible for most cases.[7] Asymptomatic infection exists but is found in less than 7% of infected individuals in the United States.[8] Asymptomatic infection may be much more common among those infected in Europe.[9]

Other less common findings in acute Lyme disease include cardiac manifestations (up to 10% of patients may have cardiac manifestations including heart block and palpitations[10]), and neurologic symptoms (neuroborreliosis may occur in up to 18%[10]). In addition, simple altered mental status as the sole presenting symptom has been reported in early neuroborreliosis.[11] Patients have been known to get Baker's cysts.


Chronic symptoms
Cases may progress to a chronic form most commonly characterized by meningoencephalitis, cardiac inflammation (myocarditis), frank arthritis, and fatigue.[1] Chronic Lyme disease can have a multitude of symptoms affecting numerous physiological systems: the symptoms appear heterogeneous in the affected population, which may be caused by innate immunity or variations in Borrelia bacteria. Late symptoms of Lyme disease can appear months or years after initial infection and often progress in cumulative fashion over time. Neuropsychiatric symptoms often develop much later in the disease progression, much like tertiary neurosyphilis.

In addition to the acute symptoms, chronic Lyme disease can be manifested by a wide-range of neurological disorders, either central or peripheral, including encephalitis or encephalomyelitis, muscle twitching, heightened sensitivity to touch, sound and light, paralysis [12] polyneuropathy or paresthesia, and vestibular symptoms or other otolaryngologic symptoms[13][14], among others. Neuropsychiatric disturbances can occur (possibly from a low-level encephalitis), which may lead to symptoms of memory loss, sleep disturbances, or changes in mood or affect.[1] In rare cases, frank psychosis has been attributed to chronic Lyme disease effects, including mis-diagnoses of schizophrenia and bipolar disorder. Panic attack and anxiety can occur, also delusional behavior, including somatoform delusions, sometimes accompanied by a depersonalization or derealization syndrome similar to what was seen in the past in the prodromal or early stages of general paresis

[MrsMagoo]

I worked for a lady that had Lyme's disease a couple of years earlier. Apparently, she had it for a while before it was diagnosed also. Unforntunately, she had some residual memory loss and pain (like you mentioned). I guess if it's not quickly treated, there can be some long term effects.

Good luck!

[ksos]

Chi,

I never knew Lyme was so bad but now that you mention when you first felt the pain in November, you must have been infected in the fall. I should have asked you if you have or were around dogs in the late summer time, not that I know much about what the etiology of this obviously terrible disease. I was told that by my MD that just walking into a wooded area or even in a well cared for backyard can be where you contracted it.

The "when" is unknown and you may have gone such a long time prior to medical intevention. I hope you may find your answers with your medical team and receive the treatment you need. It is really hard, I can imagine...

Ksos
i=oth the Medicsl g

[chiynita]

Blood work came back today. i guess there are 2 strands. One being the organism and the other just old whatever. Good news is. The organism is gone. So basiclly that makes it a negative for Lyme. Bad news. iI still have th other strand that may never go away. But it doesnt reproduce or grow or anything like that. It is just there.
But I am left with the symptoms which may never go away. I could very well have gotten a long term joint problem from this Also I have very bad fatigue lately. Seems I cant keep my eyes open someitmes.
My Dr is still going to consult with an infectious disease specialist and get their opinion. He also wants to do anothe blood lab in a few weeks to make sure that it is going away and not coming back.
The pain isnt too bad. But some days it is very uncomfortable. Especially my knees.
But nothing I cant handle.
Thanks for the support guys.

[Impurrfect]

(((Trish)))

I'm glad you are getting this followed up. I didn't know Lyme disease could cause so many problems, either, so thanks for the education.

Hugs and prayers!

Amy

[kmsj75]

I've never posted in this forum, but I'm so glad I opened this thread!!!

I was diagnosed with Lyme Disease in 2001. Before that, Chronic Fatigue, Fibro, etc. Unfortunately, I know all too well the pain that comes with it. For me, it was mainly migrating joint pain (ankles and wrists.) It was an old infection, probably from childhood, hence the joint pain. Part of the problem with Lyme is that practically anything can be a symptom. To this day, I'm not sure which of my physically issues are from Lyme or from just plain getting older! LOL


Let me preface what I'm about to say by telling you that at the time, I was not in recovery- my addiction, up until this point, had been "manageable."

While being treated (including by IV antibiotics,) I became addicted to opiods and benzos. They worked so well, but quickly took over. In the end, I had resigned myself to the fact that I would have to stay on these meds forever just to function. I don't know if that was true or not- I quickly went downhill, and wound up losing everything (husband, children, house, money...) I will have 3 years in NA next month, and have not taken anything for Lyme since getting clean. My symptoms have dramatically subsided, which of course, really helps!

I suppose this is just my experience, I don't write this to scare you- it's honestly one of those "recovery moments" where a hard lesson is redeemed. Does that make sense?

IMO, the fact that you have recovery knowledge is a great head-start! I know this post proabably hasn't been very helpful, but just wanted to let you know that I understood. Feel free to PM me if you ever need to.

Peace and Blessings,
Kristin

[chiynita]

Thx Km..Seems like Lyme is so confusing..Even to the professionals.
I go to a new Dr Mon.
I had to go to Urgent Care this morning. Because it felt like my arm, hands and wrist were just one big huge painful charlie horse.
I just couldnt take anymore.
This time the Urgent care Dr told me if someone doesnt get me to ID..Then go back to him and he will.
I guess he specialises in internal Med..So he has some knowledge.
Geez...This Lyme just seems so elusive.
I never ever thought it was like this.
I just hope there isnt any long term damage caused from it taking so long to treat it.
The Urgent care dr gave me a script for hydros. But they make me so sick to my stomach. I just cant take them.
Guess I will be toughin it out.
Which is ok I guess.
I am hoping someone can figure out something. Its been almost 9 mos now.

[kmsj75]

Lyme is confusing, even to our doctors. There are very conflicting views on it and its treatment- The biggest problem for me was because there were no "definitive" answers, I became obsessed with the disease and trying to learn about it. Before long, my identity was wrapped up in Lyme, and every time I had a cold I was convinced it was Lyme-related. I suppose it was still yet another aspect of my addictive personality. I still have fears, the "what ifs," but now I have to just go on the best I can and live, Lyme or no Lyme. If you are looking for a doctor, states usually have at least one "Lyme Specialist." Try going to Lyme Disease Network and post if anyone knows a good doc in your area.

Best of luck!
K

[jazpoppy]

chiynita;

I wish you the best. Please update us on your progress with you disease and how your doctors are treating you. Your story may inspire others to step forward. Have you ever gone to Revolution Health's Lyme Disease Support forums and blogging at Lyme Disease - Blogs - Revolution Health . If not, they have a forum and blogs by other Lyme sufferers to reach out and support each other. Hope to hear from you soon.

Love

Jaz