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» LymeNet Flash » Questions and Discussion » Medical Questions » Does this sound like late Lyme? (Xposted from Doctors forum - sorry)

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Author Topic: Does this sound like late Lyme? (Xposted from Doctors forum - sorry)
agszafran979
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In the Summer of 2002, I worked outdoors frequently in eastern PA near Swarthmore. I frequently came home in the evening with ticks on my skin, but I always showered after coming home, and I think that I managed to remove most of them before they attached. In August of that year, I did find one of the 'lil buggers attached to my head. I developed a flu-like illness with joint pains in Sept-Oct, but it went away by Nov or so, so I thought nothing of it.
In mid-May 2004, I was bit in the head by a tick again after walking in the Watchung Reservation in north Jersey. The tick stayed attached for quite a while, since I thought it was a scab (I had hit my head on a closet door the day before). When I picked it off, I was horrified to find an engorged tick.

The first weekend of June, a week into my new job, I expecienced an illness with severe headache and pains in my neck, along with fever, diarrhea, stomach pains, and chills. Also some UTI-like symptoms with an almost orgasmish tickling after urination. This illness went away after a few days, and I had no rash on my head, so I didn't worry about it too much. Mid-June, I noticed a red spot about 2" in diameter below my right nipple. I thought it might have been a rub mark from carrying a backpack. The spot hasn't faded completely to this day - I have sort of a red ring there.

In July and August, I had joint pains so bad that it was often uncomfortable to walk up the stairs. I attributed these to being 20# overweight. My hands also felt like they'd been beaten with sticks the morning after I did any sort of manual labor. One morning, after working on my car, I could barely type at work.

In November, I pulled a back muscle moving my motorcycle. The back pain, which was severe at times, didn't go away until this month. Also, the UTI-type symptoms returned, along with sore throats, joint pain, and fatigue that was severe at times. From September until now, I seemed to have a "cold", before which the joint pains peaked and after which they subsided, almost exactly every 4 weeks.

In December, my dog started to suffer bouts of vomiting. She was diagnosed with Lyme and made a complete recovery after 28 days of Doxycycline (150mg/day).

In January, I went to my GP, who took a Lyme test and some other blood work. Everything came back normal except for "equivocal" antinuclear antibodies, and slightly elevated RBC (I've had that since birth - it seems to run in the family). He said that "more exercise is probably just the ticket for the joint pains." The ELISA Lyme test came back 0.38 LIV (>1.20 is positive, >1.00 is equivocal). The actual titer value wasn't given, and I'm not sure how to translate LIV into a titer value.

Also in late January, not trusting the Lyme test, I took 400mg Doxycycline divided into 100mg doses twice daily over 2 days. About 6 hours after the first dose, I started experiencing Herx-like symptoms, with severe headache, nausea, chills (not much fever) and a racing heartbeat. Following the two days of Doxycycline, most of the UTI-like symptoms disappeared.

On March 11, I saw my GP for a sinus infection. He prescribed 600mg of Omnicef (Cefdenir) per day over 10 days. The drug seemed to have no effect for the first 2 days. On the third day, I experienced a reaction with itchy bumps on my face, stiff neck, chills, and my right knee (generally the more painful one) becoming hot and painful. Not fun, since I was on a bus to Boston at the time, and touching the seat in front of me with my knee really hurt.

On the night of the 14th-15th, I had a severe headache and stiff neck, accompanied by chills and very sore muscles. These symptoms went away late the next morning. After that, I noticed a marked decrease in my joint/muscle pains, and my "pulled muscle" back pain was reduced to almost zero.

I have now been off the antibiotics for a day, and so far, the joint pains have not relapsed in any sort of major way. I know that Cefdenir is not considered an ideal antibiotic for Lyme, but it is in the same class of drugs as Rocephin, so I suspect that if I had Lyme, it could provoke some change in my symptoms.

My GP refuses to prescribe more antibiotics (either Doxycycline or Omnicef) despite the joint pains, rash, and history of tick bite. He says that the joint pains cannot possibly have an infectious cause.


Posts: 36 | From Summit, NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
Aniek
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Hello and welcome.

Yes! It reads to me like a case study of Lyme. Some others will be along with a whole list of links for newcomers that you should read through.

There are theories that reinfection can increase the bacteria load and make Lyme worse. If that's true, it could explain why the second tick made things worse.

There are many, many false negative test results for Lyme. A negative Elisa means absolutely nothing.

On another note, your reaction to antibiotics sounds like it could be an allergic reaction. Especially since the first reaction was in 2 hours, and the second included itchy bumps. I'd just be aware of that and discuss it with a doctor prior to starting more antibiotics, it can be dangerous.


Posts: 4711 | From Washington, DC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
treepatrol
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WELCOME To LYMENET


Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

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A copy of this is stored in computer Help section.


Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
agszafran979
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[QUOTE]Originally posted by Aniek:
Hello and welcome.

Thanks.

There are theories that reinfection can increase the bacteria load and make Lyme worse. If that's true, it could explain why the second tick made things worse.

I'm not sure if my first illness was Lyme, or just a particularly bad case of the flu/sinusitis, honestly. I wasn't worried about it at the time, but I just threw it in here for reference.

On another note, your reaction to antibiotics sounds like it could be an allergic reaction. Especially since the first reaction was in 2 hours, and the second included itchy bumps. I'd just be aware of that and discuss it with a doctor prior to starting more antibiotics, it can be dangerous.

Maybe, although the reaction subsided as antibiotics continued, rather than getting worse. If anything, it seemed like a particularly bad case of the flu (other than the itchy bumps). Wouldn't an allergic reaction get worse or stay at the same level as antibiotics continued? Something other than an allergy was definitely going on, since my right knee, which had been bothering me before, became warm and tender (not in a good way )

-Drew


Posts: 36 | From Summit, NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
terter
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Hi,

I will make this short and to the point. Run, limp, walk, drive, or dial the phone number of an LLMD ASAP!!!!!!!!!!!!!!

You cannot have all of those symptoms that come and go, change with antibiotics, have multiple tick bites, infections, etc; and not have something serious. If you don't have LD I will be totally SHOCKED!

It took me 32 doctors to get the right medications and diagnosis. If you don't get the help you desperately need now, from an LLMD, you will become sicker, and possibly end up with permenant neurological damage. This is not something to ignore.

Please, please get help. The above websites are fantastic, but a lot to comprehend at one time. Read them over time, but in the process, search here for an LLMD. I have a fantastic one in Neptune city, NJ-exit 100 off the Garden State parkway.

Take care, and refuse to hide from this. Take control of your medical health, and don't keep second guessing yourself.

Hugs-terter


Posts: 774 | From NJ | Registered: Feb 2002  |  IP: Logged | Report this post to a Moderator
agszafran979
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quote:
Originally posted by terter:

Please, please get help. The above websites are fantastic, but a lot to comprehend at one time. Read them over time, but in the process, search here for an LLMD. I have a fantastic one in Neptune city, NJ-exit 100 off the Garden State parkway.

Anyone who you can recommend? E-mail me off-list at aszafran (at) s c c s (dot) swarthmore (dot) e du. (Address munged to avoid spambots.)

Thanks -Drew


Posts: 36 | From Summit, NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
terter
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Hi-yes-my doc!

Dr. Richard Rhee
Jersey Shore Neurology
1900 coorlies Ave.
Neptune city, NJ 07753

732-775-2400

You can say that Terry, with myoclonus sent you from "talking" on the internet. He is excellent.

Look at the post under Mrs. Myoclonus, and see some of my posts. Even though you don't have myoclonus, you will kind of get to know me.

take care, and take action now!!! terter


Posts: 774 | From NJ | Registered: Feb 2002  |  IP: Logged | Report this post to a Moderator
sunshine24
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its screaming lyme and you need to get to a lyme doc because regular docs dont want to treat and dont believe in lyme because they make more money keeping you sick with flu like symptoms and all the other things. i was bitten by mosquitos in 03 on my honeymoon and felt sick and didnt know what was wrong in jan went through ignex to get tested and it was equivical and with the symptoms it was positive. my reg doc wont give me meds and if he did it would be a low dose for 10 days. get to a doc who can help you because the more time you waste the worse you'll get and the longer you would have to be on meds and yes you will herx and its not fun its what your feeling now but worse stay positive and good luck
Posts: 15 | From ca | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
agszafran979
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quote:
Originally posted by sunshine24:
stay positive and good luck

if only I were, getting treatment would be less of a problem ;-P In addition to the doctor in Neptune, a friend who was in the same boat 5 years ago (and ended up with his face temporarily paralysed) referred me to the doctor that treated him, in New Providence. I'll try the his doctor first since he's closer by.

-Drew

PS- if you're from Cali, you know that you can buy good-quality meds w/o a prescription in Mexico, right? Not recommended, but if drs aren't willing to treat you, do what you need to ...

[This message has been edited by agszafran979 (edited 23 March 2005).]


Posts: 36 | From Summit, NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
lou
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Sure sounds like lyme to me too. You also should be checked for coinfections. Lots of ticks carry multiple germs. They don't all respond to lyme meds.

Terter should go back and edit the post to omit doc name. We do not use full names on this list. They should be emailed privately.


Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Yes, this is screaming LYME! Get help now, from an LLMD!

------------------
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bg
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up for TERTER ... to edit his post and remove the drs. name; show only Dr. R....

Drs. names are NOT shown unless they approve this first!

Bettyg


Posts: 1 | From US | Registered: Aug 2015  |  IP: Logged | Report this post to a Moderator
   

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