posted
Thanks for taking the time to check this post out!
I Keep Screeming to God to Help ME! I can't stop crying especially when I speak to my husband.
I have been on an IV line with Rocephin in it for a month. My LLMD says I have Lyme but I am not convinced. Can you look over my symptoms and let me know what your opinion is? I don't know where else to go. My poor children and I are in the midst of losing everyhting. My poor husband I cry to him all of the time. I can't even hear his voice without crying.
Here are my symptoms:
Obviously Neurological Crying Outbursts. I seem to cry all of the time unless someone other than my family is around.
Knee Pain (left knee mostly) no swelling just lots of pain
Total Insomnia- I can't sleep at all without strong medication
Fatigue- Fatigue that won't let go even after I sleep
Lower spinal pain- I where back patches to ease the pain
Nail ridges and indentions-I'm not sure if others with Lyme have this or not
Weight Loss-40 pounds fast. It's not pretty.
I used to have severe headaches that would send me to the ER. Perhaps tons of antibiotics have made this go away. I have also had other joint pain.
Since I have been on the antibiotics my muscles feel like they are going to tear.
The first week after I was sick I had eye twitching. I twitch everywhere now.
I get lost to familiar places, my memory is very bad. I can no longer (I have had to type this many times) type and sometimes can not speak correctly.
Most recently I have had these funky dry patches on my face.
No I have not had a positive test result. The doctor is going on the test symptoms alone.
What does it sound like to you?? Should I have this Picc line inserted as the doctor wishes. My insurance is only covering 80% so I am looking at a minium of $800 per month. I just don't know what to do anymore. I feel like I am going crazy.
I know I want this to be Lyme but I am not sure!
Please help! Thanks for taking your precious time to read and respond to this!!!
p.s. One other thing I want to tell you or wasn't sure if I should is that I was exposed to several tics a week before my symptoms began. Please do not allow this to make your decision one way or the other.
-------------------- HopeandMe Posts: 61 | From Maryland | Registered: Feb 2006
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posted
What lab did you use for testing? Have you seen a Neuro Dr? There are many knowledgeable people here that can help you....
Posts: 355 | From NY | Registered: Jan 2006
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posted
I am confused. First you say you have been on IV rocephin for a month, then at the end you ask if you should have picc line inserted and pay for the IV's because your insurance will only cover 80%.
So, are you on IV rocephin yet? I have been on it for 7 weeks, along with 1500 mg Flagyl daily. I cry all the time as well, and am not normally a "cryer". I have neuro lyme also. Some symptoms have gotten better, some worse. Everyone reacts differently. My stuttering has almost gone completely. The numbness is still in my face. The fatigue is back, so are painful joints and arthritis.
I hope you are seeing a LLMD. Maybe you should give him/her a call and tell them how you're feeling. Sounds to me like you're really having a hard time. I'm sorry, I wish there was something I could do....saying a prayer for you, Good Luck, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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I hope I didn't butcher that 1st name too much. I have seen a nuerologist and they can't find anything wrong. Yes Jill I am on the IV rocephin with a peripherial line. My veins are working to well with that so they want to place a Picc Line in. I am not a cryer either it has just started within the past year or so. I have been sick for 2 1/2 years and it has just gotten progressively worst.
I am hoping that you guys will let me know if this sounds like Lyme to you or if someone will reply to answer this question.
Once again thanks for any help I can get!
-------------------- HopeandMe Posts: 61 | From Maryland | Registered: Feb 2006
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My headaches became so severe, western blot showed 1 positive band only, I was responsible and ruled out EVERYTHING else!!! But neuro symptoms, chest pain and shortness of breath without exertion was IT!!! So had MRI of brain to rule out MS and LYMES, they found evidence of advanced Lymes, not MS 12 lesions and white matter(was seen 2yrs. earlier on MRI but they never wrote it down they wrote normal MRI no pituitary tumor) I say this so you know A.MRI'S will only use strongest magnet and thinnest slices needed to accurately view brain for Lymes BUT DR. HAS TO WRITE R/O MS VS LYMES!!!!Or it won't happen. My doc 2 yrs. ago said it is either a tumor or advanced Lymes ..because he wrote rule out Pituitary tumor the white matter and lesions they never wrote about in report, therefore 2 yrs. of damage occured. I was 47 then my Lyme Doc said over the phone how old are you? He said no one under 80 should have white matter! Get in here now for a PICC and rocephin. I tell this story for you to take charge! B. rule out all other diseases that mimic Lymes (I know 10-12) C.Lyme specialist is only route to go! Be strong.Rocephin penetrates brain matter, PIC catheter get done by Radiologist(DR.)UNDER the xray screen for proper placement.YOU WILL GET BETTER!EMAIL me privately for support..I am not a Doctor just a patient BEATING the odds!!hugs to you...crying will lessen stronger you get by you and husband being strong advocate!
Posts: 21 | From Alexandria,Va | Registered: Jan 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hope, you have classic, absolutely classic lyme symptoms. I would say that your experiencing a very good herx reaction with the crying.
Very common for lyme patients to experience a worsening of symptoms before they eventually start to feel better. Hang in there, it WILL get better, unfortunately it is a slow process.
Fatigue and then insomnia are a horrific combo that many lyme sufferers endure. Our son used amytriptyline and ambien for sleep. Careful, it'll knock you for a loop before it knocks you out.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
NurseKim, just wanted to add that my 14 year old had lesions in his white focal matter per-MRI at the beginning of his lyme/babs treatment. After a year of abx it cleared up completely.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
First off, have you actually been tested? What led your dr to believe you have Lyme disease?
Your symptoms do match Lyme but none of us on here are dr's and therefore we cant diagnose you. I would suggest that if you are not happy with your current LLMD to perhaps seek out a second opinion?
I do know with this disease that things definately get worse before they get better. I too have really bad crying spells-not as bad as what you are describing, but I still get them!
I hate this disease and everything it does to a person. I have 3 young kids and its tough being sick with them around. It all just stinks.
Feel free to send me a private message anytime.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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quote:Originally posted by NP40: Hope, you have classic, absolutely classic lyme symptoms. I would say that your experiencing a very good herx reaction with the crying.
Very common for lyme patients to experience a worsening of symptoms before they eventually start to feel better. Hang in there, it WILL get better, unfortunately it is a slow process.
Fatigue and then insomnia are a horrific combo that many lyme sufferers endure. Our son used amytriptyline and ambien for sleep. Careful, it'll knock you for a loop before it knocks you out. [/QB]
I agree with NP, but Nal is right, we are not drs....only Lyme patients who have heard this story over and over and over.
There ARE oral antibiotics which will work just as well and will save you a ton of money. It may, however, take a bit longer.
Those indentions of the nails intrigue me. You may also have a hormone imbalance. Let me go check a few things in a book I have. PM me if I forget to come back to you on this tomorrow, OK?
Hang in there
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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also saw one reference to nail ridges being an indicator of anemia....and that could be linked to babesia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Nail indentions and ridges are a sign of B-12 deficiency. That's the outward sign. Being B-12 deficent is harmful for liver, effects red blood cells and digestive tract.
B-12 deficiency with lyme is so common. Many do injections. I personally am a big baby and do sub-lingual B-12 tablets in high doses.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Nice to here from you here. Nail ridges and indentions are not white specs. They are vertical lines that go up your finger. I also have one that go deep that I call indentions across the finger.
Hope this helps!
-------------------- HopeandMe Posts: 61 | From Maryland | Registered: Feb 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
YES-MANY OF YOUR SYMPTOMS SOUND LIKE LYME
YES-WE ARE NOT DOCS
REMEMBER TESTING DOESN'T MATTER (NEG TESTS ANYWAY) IT IS A CLINICAL DIAGNOSIS
ALSO-THE FACT YOU ARE WORSE (HERXING) in itself is a way to dx (check with your doc on this)
also-often---AFTER treatment your tests become more positive
and YES-MANY OF US GET IMPROVEMENT (I'M AFRAID TO SAY WELL) BUT SIGNIFICANT IMPROVEMENT WITH ORALS AND THEY ARE SAFER IN SOME SITUATIONS AND I GUESS CHEAPER
GOOD LUCK
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Moose, I always thought that white spots on nails were a sign of a zinc deficiency. You may want to check that out also. Judy
Posts: 35 | From Litchfield County | Registered: Mar 2006
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liz28
Unregistered
posted
Yeah, it all sounds familiar. The person who wrote that we're (mostly) not doctors made a wise suggestion, but it's okay to say everything you described is normal.
I also have read about nails and zinc and B complex. A lot of people here use www.vitacost.com to get inexpensive supplements, and they've always been a helpful source so far. For the twitching, load up on magnesium. For fatigue, take CoQ10 and cordyceps. Antibiotics pull all the nutrients out of your body, and chronic infections burn the body out.
In fact, maybe just read Dr. B's guidelines, since he talks a lot about supplements that help Lymies:
I can tell you what has helped me so far, but you know the drill, it's a one-sided opinion from a fellow Lymie, who could switch antibiotics at any time:
Lyme: Ketek 400mg twice a day Omnicef 300mg twice a day At least three liver supporting supplements (such as milk thistle, schizandra, NAC, alpha lipoic acid, CoQ10, or lecithin).
Omnicef is in the same drug class as rocephin, but is maybe one step down. It's not quite as powerful, but it's pretty darn close, it's cheaper, your insurance company will like it better, and you will definitely see whether or not you respond without putting a PICC line in.
I was on rocephin two times, once for six weeks, and once for seven months. It worked beautifully on the Lyme, but since I had two tickborne co-infections as well, the rocephin was completely wasted and antagonized the insurance company for no reason.
I used to go days without sleep. What eventually helped with that was actually bartonella medication. While co-infections are the latest fad in the Lyme world and it's easy to blame everything on them, bartonella does cause serious problems that can be interchangeable with Lyme symptoms. It causes insomnia, joint pain, emotional outbursts (and you will have no control over them, they aren't your fault). There are only two antibiotics you should bother with for that: rifampin or levaquin. Everyone seems to respond to one but not the other, and everyone seems to think one of the two is a miracle drug. I took rifampin and ketek for five months, and seem to be in remission, although it's hard to predict these things.
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I thought I was going crazy during my second round of antibiotics. Crazy from pain, strange bouts of crying, and many other neuro symptoms.
So this time, my 3rd round of antibiotics, I have lined up all symptom relief medications.
I don't see many people talk about theese specifically so far, but I am relatively new to this site.
I am also struggling with this issue because I hate taking narcotics.
But this is what is helping me cope/be more comfortable during this latest tx: morphine, prozac, klonopin and marinol.
It is important for me to be relaxed during this treatment. I also meditate, many times a day. If physical pain, or emotions arise too far, my body/mind resists them (they are painful) and the resistance causes stress. So the meds and the meditation help this.
Although it is a daily undertaking -- what to do in each moment. The symptoms of this disease and the herx reaction change. I TRY to keep one step ahead, otherwise, I pay a huge price.
That's my experience. Good luck. It sounds like neuropsychiatric lyme disease to me -- but, disclaimer: I am not an MD.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Oh, the crying! I didn't expect it, but during the doxy-herx-from-he**, I had a two day crying fit! I was crying about everything... sad things, happy things, totally mundane things....sheesh! Made me feel like a basket case....
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Hi Hope, I had similar crying, psych symts, also no memory and a feeling of hoplessness. I am 42 and have always been active and happy.
Then the multitude of symptoms decended and every know test under the sun. All neg. I continued to worsen. Family worried desperately about me--crying all the time.
Two negative lyme tests later a doc friend put me on doxy then after a week sent my blood to stonybrook labs and it came back cdc positive.
After studying the disease, I was hell bent on treating it with or without a pos test.
My lld is one of the best in the world, Dr. P. He says that IV and orals can reach similar blood levels and neither can get through the cell membranes where the L forms hide.
I had neurolyme real bad and I know my oral combos are working because they make me feel so horrible.
Hang in there, keep learning and get a second lld opinion if you are feeling uncomfortable with your treatment.
This is a long, hard road. If we understand that up front, it makes it more tolerable.
(I am not a doctor, but feel like I am studying enough to be one!)
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