posted
My daughter is 17 has been experiencing symptoms such as sore throat, extreme exhaustion, low grade fever, hypoglycemia, norcoleptic type episodes, pain in her head, muscle aches that are continually coming and going. The fever has been responding to amoxicillin. Is this typical with Lyme's?
Posts: 7 | From Cleveland, OHIO | Registered: May 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Can be lyme but also chlamydophilia pneumonia or a staph ...malaria like diseases .. or a neg. strep ... anything else
I also would start treating parasites first, read from Dr. K please.
I personally like amoxy and get better from amoxy.
Also mold can make this kind of complaints, see Dr. S.
So,yes it can be lyme and you need to find an LLMD.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Could be a host of many different infections , I say infections because it is responding to treatment . What makes you suspect Lyme besides her symptoms ?
Posts: 198 | From Rhode Island | Registered: Sep 2010
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posted
She's a runner who runs in the woods - symptoms began during fall running - flu like symptoms lasting about a week, reoccuring about every 4 weeks, then began terrible headaches, and various muscle pains, then exhaustion/stiff or sore neck, back ache and sore throat. Then she began having these episodes where it is almost like a seizure but she is able to talk to me but feels like she can't stay awake. The flu like symptoms continue to reappear. Numerous tests - everything comes back negative. Doctors did one simple lyme test it was negative therefore say it cannot be lyme. She gets better then worse. No answers. Contemplating taking her to an LLMD.
Posts: 7 | From Cleveland, OHIO | Registered: May 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Get her to an LLMD as fast as you can. The sooner she is treated properly, the better. It if is lyme & co-infections, it's better to arrest it before it does too much damage, i.e. affecting school work, college, etc.
Just a reminder--kids will self treat with drugs & alcohol. None of us with kids with lyme want to deal with this on top of lyme.
I'm surprised you did not mention any depression or irritability. This is also quite common among lyme patients.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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In the meantime, get copies of all the test results.
Ask the doctor to run a Western blot - and get a copy of the results. Try to have her take care of herself as best as possible, while waiting to see an LLMD.
One LLMD I talked to recently said - while you are waiting to see the LLMD: to keep a detailed daily log of symtoms/severity, medications, supplements and body temperature (3x day). He does not recommend starting antibiotics on your own in advance of visit, since it might affect the antibody testing.
A log will help you and doctor to see trends and give better diagnosis.
good luck - racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi worriedmom:
The elisa lyme test done on your daugher is advertised to have a 95% sensitivity. This is actually false as many factors impact the testing and a 2007 study pegged it between 30 and 65% depending on the lab (I don't have my notes with me).
I would suggest Dr. B's Advanced Topics in Lyme Disease Guidelines as a start.
I'm not saying this is Lyme and Babesia (did she also have a period of a few days with higher fevers?) but many of the symptoms are similar to either what my daugher experienced or what I've read from others.
So it could be something else but Lyme and Babesia can be present.
My daugher has never been positve for her Lyme blood tests. At best she has had 3 positive markers at one time (with a couple of indeterminate).
One of my daughers symptoms (the daily fevers) didn't stop till she was in her 8th week of mepron and zithromax treatment. This is the treatment for babesia which she also has not tested positive for.
Now Babesia is another one where you can test negative and still have the diseae.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Yes, please find an LLMD! They'll probably have a waiting list but get your daughters name on the list.
I still have trouble wrapping my head around it but most mainstream drs will NOT acknowledge chronic Lyme and they know nothing about it.
My ELISA test came back negative for Lyme 2 times by drs who later diagnosed me with Lupus, MS and Chronic Fatigue. None of the drs could agree. I even suggested Lyme to all of them and they said none of my symptoms were Lyme.
The following link is Dr. B's guidelines that t9im mentioned above. Go to page 9 and look through the checklist of possible symptoms.
I also had a mild fever for 9 months and the drs just disregarded it. Fortunately I found LymeNet and got myself to a lyme dr who is brilliant and am on the road to recovery.
Most of us have been told at one point in time, or thought to ourselves that we are crazy but this is real and devestating if not treated properly.
How lucky your daughter is to have you as a mom, fighting to find a dr to help her be well again! You're in the right place!
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I had recurring fever every afternoon for about a year after the flu-like illness from he!! hit me.
I went into rheum specialist office maybe 6 mths into illness, they took my temp and it was 103. Asked me if I knew I had a fever. Yes, I've had fever everyday for months.
I quit taking my temperature. Why bother, nobody seems to be able to tell me what is going to stop it.
This specialists after another gallon of blood told me I had a viral infection and when the viral infection went away and left my body I would feel so much better.
I wonder if I went back to him 11 yrs later and asked if it's been long enough to wait for that virus to be gone....he would have an answer or clue how to help me??????????????
Oh yeah if I have temp today of 99 it's a low grade fever for me. My temp is always 97.something. 103 for me would be delirious.
So that's how I know I'm fighting a virus, simple cold or flu. I actually have a fever at 99 and boy do I feel like it is ten degrees higher.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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