New confused and on treatment

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Thomasjaye
New Member


Date Joined Jan 2018
Total Posts : 6
   Posted 1/21/2018 10:12 AM (GMT -6)   
Hello everyone. I am new to the forums and I would appreciate it if anyone took the time to read this. I am being currently treated for lyme disease or some other disease (tests are pending).

Two weeks ago I was in Cancun and I got some bug bites. None of them were really note worthy except a big one. But they all went away eventually. about 1.5 weeks later, I had intense body aches that took me down for the count. On the 12th (jan) two of my bug bites flared up again, so intensely that they were insatiable no matter what I used, but I was good not to aggrevate them. Then one by one, all my bug bites flared up again, except the bug one. By Monday the pain had subsided, but monday night I noticed that the big one was a very clear ring around a center. I knew this was bad, and the next day I went to urgent care.

The doctor blew me off, so on wednesday I called my doctor to see me thursday. He immediately started me on treatment on doxycyline for lyme disease and sent out the tests. By then my knees hurt and the muscle aches had returned.

So here I am, experiencing a lot of symptoms. Doxy symptoms and maybe lyme.

-My joint pain seems to be in my wrists, some times my fingers, and my ankles, sometimes my toes and knees.
-my back and neck hurt from time to time too
-muscle aches
-fatigue
-sometimes I jerk around a bit when I am trying to go to sleep, like a spasm
-vivid dreams or nightmares
-last night I was going insane over a high pitched squeeking sound vibrating from the downstairs air vent and making it up to mine. Lost 2 hours of sleep before it didnt seem to bother me anymore...

Besides that, I have the normal digestion related Doxy symptoms. I am a child cancer survivor, and this treatment reminds me of chemo at times. So hang in there if you are having a hard time with it, it's no joke.

I am worried, naturally. I do not understand. I was in a resort in cancun and very active. I do not know when a tick could have gotten me, let alone carried lyme. Its definitely not common there at all. I am in a battle between wanting my test to be positive so at least I know what it is and my symptoms are validated. But then again, if it is not that is good but then what do I have?

My problem is that I do not know how much is the treatment and how much is the disease. I don't know if I am experiencing some things due to stress or if these symptoms are real. This all feels quite unreal.

I am confused about the early inset and late onset symptoms. I seem to have none of the common ones (fever, headache) and a late one (hyperacuity??).

I suppose I just have to wait for the test. But I feel like I am going crazy with this treatment and I am only on day 3. I caught it as soon as I possibly could have. All I can do now is settle into the experience for awhile and deal with the information when I gets here.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9728
   Posted 1/21/2018 10:32 AM (GMT -6)   
Welcome Thomasjaye and I am so sorry you suspect lyme.

I remember very well the overwhelming symptoms and research and research. Just about the time I would research one symptom, it would have moved to another spot. It was frustrating and it definitely filled me with anxiety.

You are so not alone. Sadly there is no way I can alleviate your fears completely. Just know that I am healed from lyme and so is my husband, so you can do this.

You are very fortunate to have caught it early. However, it has been my experience that "regular" doctors do not know much about how to treat lyme disease. They will look it up and see what the CDC says to do and that "may not" be sufficient.

I say may not because a girlfriend of mine proved me wrong on this with her simple course of doxy.

My opinion, as a caring-been-there-lyme-patient, is you really need a doctor that has studied about lyme and the courses of treatment. This is called a Lyme Literate Medical Doctor -- LLMD.

Here are some sites I used to help me find mine. And when I found one, I asked all kinds of questions before going there.

Good luck and I highly suggest you keep coming here. First of all there is lots of experience and information here, secondly, you will find like minded people that understand.

/sites.google.com/site/lymedoctors/

/globallymealliance.org/education-awareness/find-medical-professional/

ilads.org/ilads_media/physician-referral/

/www.lymediseaseassociation.org/ -- Go to Dr. Referral tab

If you would rather do herbs

buhnerhealinglyme.com/resources/herbalists/

Thomasjaye
New Member


Date Joined Jan 2018
Total Posts : 6
   Posted 1/21/2018 10:52 AM (GMT -6)   
Thank you for your compassionate response. It is overwhelming, I think that is the word, and it helps that I am not alone.

And thank you for the resources. It's important to arm myself with the right information and not random internet information - that I try to stay away from because it tends to be all over the place!
I appreciate your help!

-Thomas

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9728
   Posted 1/21/2018 10:55 AM (GMT -6)   
Any time! Check out the first thread, New To Lyme. It has a lot of good information. It is lengthy but take it in small doses.

Wisco woman
Regular Member


Date Joined Oct 2017
Total Posts : 66
   Posted 1/21/2018 11:09 AM (GMT -6)   
Yes please find yourself a LLMD. The basic tests for it do not always give you an accurate answer so it might say negative when you do indeed have lyme. I'm sorry to hear about the childhood cancer but it sounds like you are a fighter. You have to have the same attiitude with this disease. Good luck and keep us informed.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 334
   Posted 1/21/2018 11:32 AM (GMT -6)   
Do not rely on the tests. Yes I think it would be prudent to get an appt with an LLMD. Your symptoms plus bullseye rash to me sounds like a slam dunk. The tests are not good at detecting infection. I read studies and articles that say tests are picking up 15-30% of Lyme diagnosed patients with bulls eye rash...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 1/21/2018 1:00 PM (GMT -6)   
You are fortunate to have caught it early..and started treatment right away. But, you must treat it with the right dose of doxy and for long enough.
This is your best chance of knocking it out NOW and not have it become a chronic infection.

The doxy should be 200 mg twice daily. You need to treat until you are symptom free PLUS 4-8 more weeks.

Here are the Lyme Disease Treatment Guidelines.

www.lymenet.org/BurrGuide200810.pdf

Look at Page 18-20 - you will see the doxycycline dosage, as well as treatment duration.

Print it off if you need to and show your Dr.

BTW - I never had a fever or a headache...or flu-like symptoms.

I would also schedule an appt. with a LLMD for follow up . you've got a lot of symptoms - and you may need more than one antibiotic to treat.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/21/2018 1:10 PM (GMT -6)   
Hi Thomasjaye,
Welcome to the community! And thank you for validating the suffering here!!! I'm so sorry that you have already had to deal with cancer as a child, and now this!

You've been given some good information so far!! And I wish you the best of luck in fighting these diseases.

Something I noticed that was not mentioned is that if you have stomach upset with the Doxy - take it with food. For those that have significant issues, it's best to sandwich it in a meal (eat a bit, take the Doxy, then finish the meal). Also, be sure to sit up (not reclining or laying down) for at least 30 minutes after taking the Doxy.

Also, do be sure to start detoxing - it's nearly as important as the treatments themselves. There is some really good suggestions in the "New to Lyme" thread, as well as here:
www.tiredoflyme.com/detox-methods.html

And,please!! Keep asking questions!! That's what we are here for! There are no dumb or silly questions!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1662
   Posted 1/21/2018 1:30 PM (GMT -6)   
Thomasjaye,

Welcome to the forum! Your symptoms sound very much like Lyme and possibly other coinfections. There are many coinfections, but babesia and bartonella seem to be the most common and most troublesome. Testing is terrible for many reasons based on how soon a person is tested after infection and the ability of the person's immune system to produce antibodies.

You mentioned bug bites but didn't say whether you saw or positively identified the bugs. Just so you know ticks are not the only thing that can transmit these infections. So, if there are no ticks in Cancun, there may be other bugs there that are infected. It's also possible ticks could have been picked up elsewhere on clothing or luggage and found you that way.

I'm not sure if I've ever heard anyone describe their Lyme symptoms as feeling like the flu. Most people, myself included, experience all sorts of unusual symptoms that don't feel like anything else they've ever experienced.

Thomasjaye
New Member


Date Joined Jan 2018
Total Posts : 6
   Posted 1/21/2018 3:00 PM (GMT -6)   
Thank you everyone for the advice. I will find myself a LLMD. The doctor only prescribed 100 mg for 10 days until he can get the tests back and I know it should be longer.

And I did not positively identify the insects unfortunately. There were a lot, everywhere. Despite my interest in entomology I did not take many pictures of the insect life.

Thomasjaye
New Member


Date Joined Jan 2018
Total Posts : 6
   Posted 1/21/2018 3:16 PM (GMT -6)   
For the sake of reference, I will post these here:

This was Monday night, Jan 15th when I first noticed.
VIEW IMAGE

This was Wednesday, Jan 17th. After Urgent care Tuesday morning, I marked it, and called for appointment on Wednesday
VIEW IMAGE

This is today, Jan 21
VIEW IMAGE

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9728
   Posted 1/21/2018 3:21 PM (GMT -6)   
Mine lasted for 3 weeks and I had no idea what it was. We have a lot of bugs here in the mountains, spiders too and I have been bit many times. So, since this bite lasted on me for 3 weeks, I was concerned. I thought mine was a flea bit. I had been in a house and patio that a dog and cat were running around.

Glad you got pictures. Giving those pictures should be enough for any lyme doctor to treat you. Lyme is the only thing that makes that mark.

Lyme doctors should treat because of symptoms. A test is not required. Most tests aren't that reliable.

I wish I had of taken a better picture of mine.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1242
   Posted 1/21/2018 3:40 PM (GMT -6)   
Mexico-I always think parasite.
I would find a doc who does energy testing for parasites-stool test are a waste of time

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/21/2018 5:06 PM (GMT -6)   
What you were given by that doctor is not enough to do much for these infections, even in the earliest of stages. The lowest dose that is effective would be 300 mgs twice a day for a minimum of 4 weeks, but it usually takes longer treatment than that for many, but not all. My hubby got infected with Lyme and Anaplasmosis, and took 300 mgs twice a day for 4 weeks and it worked, but we caught his infection within a week.

Great pictures too! Be sure to take those with you. The first picture you posted shows a clear bulls eye rash.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Thomasjaye
New Member


Date Joined Jan 2018
Total Posts : 6
   Posted 1/21/2018 5:18 PM (GMT -6)   
As far as how much my dose should be, I cannot comment. All I know is that I do not weigh very much at all and am not tall. I am tiny! (Chemo stunted) I can only go see a specialist about that and definitely plan to now, especiallt because of my history sad

And yes, the center of the bite was not apparent soon after and was replaced by a bruise. Also the ring has not expanded past the original irritation of the bug bite. Picture that entire area as red and that was what it looked like before. Now it is disappearinf like the other bug bites.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 1/21/2018 7:39 PM (GMT -6)   
Thomasjaye said...
As far as how much my dose should be, I cannot comment. All I know is that I do not weigh very much at all and am not tall. I am tiny! (Chemo stunted) I can only go see a specialist about that and definitely plan to now, especiallt because of my history sad

And yes, the center of the bite was not apparent soon after and was replaced by a bruise. Also the ring has not expanded past the original irritation of the bug bite. Picture that entire area as red and that was what it looked like before. Now it is disappearinf like the other bug bites.


re: your dosage - are you under 100 lbs?

The 100 mg twice daily is what Non -lyme literate Dr.'s prescribe for adults.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Thomasjaye
New Member


Date Joined Jan 2018
Total Posts : 6
   Posted 1/21/2018 8:50 PM (GMT -6)   
@girlie

I am close to that weight.
I have an update. Both tests came back negative. My platelets are high. I am going to call doctor tomorrow.

Thank you everyone

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9728
   Posted 1/21/2018 9:46 PM (GMT -6)   
Good luck to you Thomasjaye! Please stay in touch and give us an update.
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