Lyme in humans

[lisaperp]

I'm wondering if anyone has any experience with this. My brother lives in New Hampshire and had a sudden onset severe headache on back left of head (he said it feels like a gunshot), loss of consciousness, high blood pressure (200/110) and several more symptoms. This has been going on for 2 months. Doctors have found nothing. No seizures, no tumors, no bleeding, no heart issues, no meningitis or encephalitis, no inflammation, no diabetes.

He more recently has been having disorientation, muscle coordination issues, slurred speech. Also, short-term memory loss, difficulty concentrating, ringing in ears. All signs point to improper brain activity but tests show nothing.

A lyme test was done three times...first was positive and next two were negative. Could this actually be lyme or some other tick-born disease? Does anyone have any other ideas because this is getting scary.

 

[hawk]

Wish I could offer more for you but~We had a visitor 2 night's ago who is dealing with Lyme disease and has been so for years. She described many of the symptoms that your brother is dealing with. She also said that initially antibiotices seemed to help but now she is working with natural remedies which seem to be helping...
Good luck - I'm sure you'll find an answer.

 

[Capri]

My cousin's mother has Lyme's disease. It progressed quite rapidly and she has been in a wheelchair and/or bed bound (due to severe muscle coordination issues) for the last 8 years. She has had a lot of ups and downs with "being able to do things" to being totally bound to the bed. She lives in a home since needs care almost around the clock and unfortunately the family is unable to provide this (father has Parkinson's and their two children (my cousins) are still very young i.e. going to University). Her speech is slurred and she cannot do anything on her own, but her mind is still very bright. Which is a shame as she will try to communicate with us, but it is impossible to understand her. On the very rare good days we can still have conversations with her. And on a positive note she hasn't lost her spark/personality despite the disease having progressed so far. Hugs to your brother. I hope it isn't Lyme's.

 

[MMtnmom]

my Maryland kids, grandkids have all had lymes in some way shape or form: Meningitis, Bells palsy and general infectious disease processes. I'd push for rechecks.

 

[KodysGrandma]

I will send you posting on to my niece in MD who has had lyme, took 2 years for hers to be recognized. STill has occasional problems.

 

[chumleysma]

What about West Nile Virus? If he was positive for Lyme initially, he was treated for Lyme, right? If not, he should have been. I'm assuming he was tested via western blot which is more accurate than the ELISA, but has its testing problems as well. What about Lyme with an Ehrlichia co-infection? The symptoms are much worse than a single Lyme infection. What about a stiff neck and fever (as I had with Lyme), but can be seen in WNV as well? I do hope your brother is in good hands. Best of luck.

 

[lisaperp]

What about West Nile Virus? If he was positive for Lyme initially, he was treated for Lyme, right? If not, he should have been. I'm assuming he was tested via western blot which is more accurate than the ELISA, but has its testing problems as well. What about Lyme with an Ehrlichia co-infection? The symptoms are much worse than a single Lyme infection. What about a stiff neck and fever (as I had with Lyme), but can be seen in WNV as well? I do hope your brother is in good hands. Best of luck.

He was not treated for Lyme. All three tests took place over 4 days and I do not know what test it was. Never thought of WNV, will look into that one. I have not heard about him having a stiff neck but yes fever. Will also look into Ehrlichia too.

 

[Newfs Forever]

I would like to suggest you go into Boston to one of the big medical centers. I wouldn't play around with this. His symptoms sound severe.

JMVHO

 

[RiverTheNewf]

My moms fiance recently got diagnosed with Lyme after the appearance and disappearance of a strange rash. After treatment, a lot of irritating health symptoms went away, like frequent headaches, stiff joints, etc. The doctors told him that the symptoms could continue to come and go perpetually.

 

[lisaperp]

I would like to suggest you go into Boston to one of the big medical centers. I wouldn't play around with this. His symptoms sound severe.

It was suggested he go to Boston but he chose not to. I think his cognitive function is definitely affected. And he doesn't have anyone there to drag him kicking and screaming into the big hospitals. If he doesn't have anything new to report in the next couple of weeks I might be making a trip out there and I will gladly be the bad guy!

 

[lisaperp]

My moms fiance recently got diagnosed with Lyme after the appearance and disappearance of a strange rash.

My brother never had a rash and never saw a tick so he feels confident that it is not lyme. Me? Not so much.

Anyone heard of pseudotumor cerebri? I'm in the process of learning about this one too.

 

[KodysGrandma]

I have emailed you via NN my niece' response. Hope it helps.

 

[ardeagold]

I agree with Mtnmom. We even have Lyme specialists here. Lyme can "lie in wait" and recur...attacking organs without you even knowing it. Everyone in the family has had it...except Jacques. He had Ehrlichiosis. ONE of us had a rash. Nobody else did.

The treatments for Lyme in the past have been far too short. Two weeks on Amoxi won't do it. Nor on Doxy. Takes a LONG time. Jacques got Bell's Palsy from the Ehrlichiosis. Was very ill. He was on Pred, Pepcid AC (heavy doses) and long term Doxy. For my Lyme, I was on Doxy for 8 weeks.

Oh..and ask to have him checked for other tick borne illnesses. Especially Ehrlichiosis.

 

[Sound Bay Newfs]

I do have experience with Lyme disease with a family member, but the symptoms were not as you describe. Lymes usually settles in the joints and then diagnosed thereafter. If his first Lyme test was positive, then why was he not treated for it? Babesiosis is another tick borne illness that is getting more attention lately as it is getting more frequently diagnosed. I hope he gets some answers as it can be very frustrating.

 

[KodysGrandma]

Decided to post Laura's reponse for others who might need it. Not much of this in FL thank goodness. Will have to keep it for when we move to VA.

Hi Emmie Lou,

One of the best resources for Lyme is www.lymenet.org. Once at the home page, click on Flash Discussions on left of screen. Then go to medical questions. Lots of good information there. For a doctor in New Hampshire, go to “seeking a doctor” and post. Someone usually gets back in a day or so, can take longer.

There are many other tick bite diseases out there. Rocky Mountain Spotted Fever, Erhlichiosis (now called anaplasmosis I think, not sure), Mycoplasma, Bartonella and Babesia. Blood tests are not reliable. A good lyme literate doctor will diagnose by symptoms. Lyme rarely travels alone. Typically, one could also have Babesia and Bartonella.

Here’s a list of symptoms for lyme:

Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol

Best treatment guidelines are those put out by ILADS. Search on Google for ILADS Guidelines, they were last updated in 2008. Ignore anything IDS, Mayo or Hopkins says.

Also, don’t overlook any symptoms in teeth. Any root canals, bridge work or teeth extractions? Infections can hide in the jaw, cause a lot of misery and wake up other dormant infections. Any contact with children, test for strep titers. With his symptoms, you would think they would do a trial run of treatment and see if he improves or not. Sounds like he’ll need IV’s if this goes any longer.

That’s all I got. Feel free to forward.

 

[ardeagold]

Decided to post Laura's reponse for others who might need it. Not much of this in FL thank goodness. Will have to keep it for when we move to VA.

Hi Emmie Lou,

One of the best resources for Lyme is www.lymenet.org. Once at the home page, click on Flash Discussions on left of screen. Then go to medical questions. Lots of good information there. For a doctor in New Hampshire, go to “seeking a doctor” and post. Someone usually gets back in a day or so, can take longer.

There are many other tick bite diseases out there. Rocky Mountain Spotted Fever, Erhlichiosis (now called anaplasmosis I think, not sure), Mycoplasma, Bartonella and Babesia. Blood tests are not reliable. A good lyme literate doctor will diagnose by symptoms. Lyme rarely travels alone. Typically, one could also have Babesia and Bartonella.

Here’s a list of symptoms for lyme:

Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol

Best treatment guidelines are those put out by ILADS. Search on Google for ILADS Guidelines, they were last updated in 2008. Ignore anything IDS, Mayo or Hopkins says.

Also, don’t overlook any symptoms in teeth. Any root canals, bridge work or teeth extractions? Infections can hide in the jaw, cause a lot of misery and wake up other dormant infections. Any contact with children, test for strep titers. With his symptoms, you would think they would do a trial run of treatment and see if he improves or not. Sounds like he’ll need IV’s if this goes any longer.

That’s all I got. Feel free to forward.

Yep..the list goes on and on and sometimes is hard to diagnose from the symptoms alone.

Jacques son had Lyme recurring for years. He got ill last year, again, and was going to a Lyme specialist but was having symptoms he couldn't figure out because the tests kept coming up negative The symptoms were the same as when he had Lyme at the beginning. It turned out that they were suspecting it was Lyme anyway and the tests were wrong, but it turns out he had something else...NOT Lyme, not tick related. I don't remember what it was, but once they treated that he was fine.

So even though you don't need to have that bulls eye rash to have Lyme...your brother might be right. It could be something else.

 

[Newfs Forever]

My vet also maintains that you can get Lyme's via mosquitoes, doesn't have to be a tick.

 

[lisaperp]

Well, he's seeing a neurologist and my brother seems to feel comfortable with the care he is receiving. I am not. But I'm not there and I guess I just want an answer to what is going on. I will update as I get information. Any ideas are greatly appreciated.

 

[twright1231]

My sister has advanced lyme and has been undergoing one treatment or another for the past 10 years. She has many of the symptoms shown in the list above. She has been misdiagnosed with RA, fibromyalgia, lupas, and others. Lyme can look like so many other problems, and there are not enough lyme literate doctors (at least in our area) but I think that is changing. Good luck.

 

[lisaperp]

My brother is now at Dartmouth (this is his third hospital) and they finally confirmed his Lyme diagnosis. He's begun having seizures now. Antibiotics started today. I cannot even tell you how upset I am that it took as long as it did for them to confirm after testing positive weeks ago. But I am hopeful that he will recover sooner rather than later. I know the next few months will be tough for all. Thank you to all for your help.