Am I really having Lyme disease???

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Confused2910
New Member


Date Joined Apr 2018
Total Posts : 15
   Posted 4/25/2018 2:59 PM (GMT -6)   
So the subject says it all.

My timeline:

September 2017.

Started feeling nauseated all the time. After 2 visits to PCP a referral to Gastroentorologist. Endoscopy of GI -> Helicobacter pylori. Started 2 anx and antacid mid November.

Mid November 2017

After a week of treatment for H. pylori headaches began. Ended up in ER on November 30. CT showed nothing, CBC normal, positive for acute mononucleosis. Headaches subsided after a week or so. Maybe they were a reaction to abx I was taking?

Mid January

Flu shot. After that it all went downhill. After 3 days I noticed white patches in the back of my throat and felt like I had something stuck in there when swallowing. Seen an ENT. She stuck a camera in my nose. Nothing. Recommendation to gargle with salty water.

Yeast infection. Treated twice with otc medication. But the feeling of itching does not go away up to this moment.

Every other week I had a cold with sore throat, coughing, muscle aches, headches.

March

I began feeling aches behind my knees and in the armpits. At some point I could barely walk!!

After another visit to PCP my blood work came back positive for Lyme. IgG 66/IgM 41/ IgM 23

I was immediately put on Doxy for 3 weeks.

Infectious disease doctor suggested that I redo Lyme testing in a week or so and a test for Chlamydia and HIV after I told him my symptoms.
Neurologist sent me for MRI of the head due to my headaches

I never noticed a bite or any rash. Moreover before it all began I was out of the country in a big city with no foresty areas.

The muscle aches behind me knees and in the armpits, and headaches and flu like symptoms still come and go even after I started taking doxy. I feel tired all the time. I saw OBGYN 3 times because of the weird feeling in my genital area. I did not have a single good day since September of 2017. I feel depressed, and saddened, I have panic attacks. I feel like my family situation is taking a toll because of all this. I can barely do things around the house. My blood pressure is now high even though I used to be on a very low side, like 100/70. And now it's 140/80.

I just cannot believe it is LYME!!!

Post Edited (Confused2910) : 4/25/2018 3:10:22 PM (GMT-6)


Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 4/25/2018 3:54 PM (GMT -6)   
Sounds like it is to me. Sorry to say. Luckily you have discovered it sooner than later. Some people go years and years before they finally start treatment. You should make an appt with an LLMD. People here can help you find one. Start a new thread and make the subject something like Need LLMD in Your City/ State.

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 530
   Posted 4/25/2018 4:01 PM (GMT -6)   
Also sounds like Lyme to me, though it can come with co-infections and other disorders. So of course keep testing to rule out other suspects (thyroid, adrenals, other viruses and infections) but with a positive Lyme test, I would be willing to bet that the Lyme or co-infections is the biggest problem.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2123
   Posted 4/25/2018 4:04 PM (GMT -6)   
Hi and welcome Confused2910,

Sorry you are having all these symptoms and struggles with your health.

Since you are still having symptoms you need to continue treatment for Lyme. It would be wise to seek out a Lyme literate Md or NP . They would also be able to tyrannically diagnosis you.

Most people do not remember being bitten or seeing a tick, they can be extremely tiny . Not everyone gets a bulls eye rash either.

Ticks also carry other infections besides Lyme, so its important to have an experienced llmd.

You can do that here by enabling your email in your profile. Then start a new post stating"Seeking an llmd in such and such area".

Then members will be able to send you recommendations.

You can also do a search : http://ilads.org/ilads_media/physician-referral/

Lymedisease.org also has physician listing.

We also encourage all new members to read our "New to Lyme" start here thread at the top of the page.

It has good information on Lyme, testing, symptoms, detoxing and more.


I wish you the best of healing and others will be along soon.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 4/25/2018 4:49 PM (GMT -6)   
I'm so sorry you have Lyme. On the positive side, you got a positive Lyme test, which many don't get and you learned it was Lyme in a matter of months instead of years like some of us.

I want to reiterate what the others have said. It's important for treatment to continue as seamlessly as possible, which means you will need an LLMD who understands treatment and will treat coinfections.

The pain in the knees and armpits sounds like it may be lymph related. The pelvic pain may be also. Could also be bartonella or another coinfection.

"Every other week I had a cold with sore throat, coughing, muscle aches, headches." This sounds like bartonella too. Doxy won't knock out bartonella.

I understand the shock. I never had a known tick bite or bullseye rash either, and my chronic Lyme symptoms started 4 days after a flu shot. I seriously don't think I will ever get a flu shot again. If I ever get a bad case of the flu, I'll break out the lomatium.

Confused2910
New Member


Date Joined Apr 2018
Total Posts : 15
   Posted 4/25/2018 7:31 PM (GMT -6)   
Thank you for the replies. I cannot discuss this issue with my significant other anymore as I feel like we are talking about my health problems 24/7

I did read the "New to the lyme" topic. A lot of useful information over there.

As I understand llmds have different approach in treating lyme than standardized medicine. Can I work both with llmd and infectious disease doctor?

I had a baby boy in August of 2016. The pregnancy was awful. I had morning sickness up to the delivery day. I 2as always tired. And after the delivery I started having constant minor colds with coughing, sore throats, etc. And then at some point there were days that I was literally sleeping on my feet. All I wanted to do is sleep. Back then I thought it's because of the newborn and havoc nights, etc. Now I'm thinking could I have been infected back in 2016? My son was born prematurely. I have been breastfeeding him until I started doxy 2 weeks ago. Should he be tested for lyme as well?

My concern is that sometimes tests for lyme can be false positive. Even the ID doctor mentioned that.

Confused2910
New Member


Date Joined Apr 2018
Total Posts : 15
   Posted 4/25/2018 7:55 PM (GMT -6)   
Will ask here for llmd in Montgomery county, Maryland. Preferably Rockville or Bethesda areas. I see couple recent topics talking about Dr. J in D.C. please email me his contacts. If they take insurance that would be just great.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32672
   Posted 4/25/2018 10:59 PM (GMT -6)   
Hi Confused. Please start a new thread titled: "Looking for LLMD in/near Montgomery County, Maryland."


You can also email me and I'll give you information about Dr. J. in D.C.

I'm pretty sure he doesn't take insurance.
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

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1522
   Posted 4/26/2018 12:21 AM (GMT -6)   
i was first diagnosed with H pylori myself. my first round of antibiotics (clarythromycin and ammox) got my first neurological herx - i felt pins and needles + muscle twitches on the feet and i freaked out because that was the first time i feel this that way. i start digging and first i found i might have magnesium defficiency (year right).

fast forward 2 months and i started having trouble walking and terrible arthritis.

this is how it starts. the inflammation is very severe in the beginning of the disease and it affects the whole body, GI tract etc...

then the inflammation starts to subside and all you get is neurological attacks.

welcome to the club.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 4/26/2018 8:31 AM (GMT -6)   
"My concern is that sometimes tests for lyme can be false positive. Even the ID doctor mentioned that."

I would not be concerned about false positives. They are possible, but highly unlikely. I have seen Lyme testing described as not one test, but 12 tests all run at the same time (one test for each band). You had three bands light up. The odds of all three of those bands being false positive is low, low, low.

I hope you find your way to a doctor that is Lyme literate.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 4/26/2018 8:43 AM (GMT -6)   
Glad you mentioned your baby. Bartonella can cause premature birth and a host of other things. Try to find an LLMD who will also treat your son if needed.

Bartonella is a big one. Don't let the doctor ignore it.

-----------------------

As far as false positives, if there even is such a thing, it would be very rare. You have SYMPTOMS and POSITIVE TEST RESULTS. Conventional doctors act like they're brainwashed when it comes to Lyme disease. I cannot explain that, but it is bizarre. How otherwise supposedly intelligent people can wholeheartedly believe lies and half truths and take them at face value without any question even when it makes absolutely zero sense in reality while at the same time wholeheartedly rejecting any possibility of the truth actually being true is beyond my comprehension. And yet I hear story after story told about doctor after doctor every day on this forum. It is truly mind boggling.

Post Edited (WalkingbyFaith) : 4/26/2018 8:50:56 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32672
   Posted 4/26/2018 11:54 AM (GMT -6)   
I don't believe there are false positives with the WB. It shows that you're immune system is reacting to the bacteria in your body. Yes, it can continue to show antibodies when you're in remission...but that's why we need to look at the clinical picture - do you have symptoms...
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

Confused2910
New Member


Date Joined Apr 2018
Total Posts : 15
   Posted 4/26/2018 8:20 PM (GMT -6)   
Can you recommend anything for detox? I'm taking florastar now, I tried taking b12 in liquid form, but it made me so dizzy and anxious, my head and ears had so much pressure. So I discontinued it.



I went to the pool today. I am hoping so do it weekly. Do you think that would help? I also used dry sauna and a steam room. It felt a bit weird inside at first. I thought I would just faint there. But after awhile it was fine.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 4/27/2018 1:55 PM (GMT -6)   
Confused2910 said...
Can you recommend anything for detox? I'm taking florastar now, I tried taking b12 in liquid form, but it made me so dizzy and anxious, my head and ears had so much pressure. So I discontinued it.



I went to the pool today. I am hoping so do it weekly. Do you think that would help? I also used dry sauna and a steam room. It felt a bit weird inside at first. I thought I would just faint there. But after awhile it was fine.


Epsom salt baths are good. I use 3 cups of epsom salt and about 8oz of hydrogen peroxide in warm bath water.

Don't use too hot of water. Also start with just 1 cup and see how you do. You can gradually increase the amount. If you're very sensitive, you could start with a foot soak before doing a full body soak.

Confused2910
New Member


Date Joined Apr 2018
Total Posts : 15
   Posted 5/11/2018 7:50 PM (GMT -6)   
I did the MRI. It's normal.

Finished 3 weeks of doxy. But all the symptoms are still with me. They are migrating. 4 days if muscle aches, armpit pain, then next 4 days it's the headache, then a week of genital itching and burning. Oh man. .

And I'm so so tired. I force myself to go to work, force myself to smile and talk to the co-workers. I somehow manage to swim in the pool once a week and go to the steam room. That's the only time I can relax.

Today I noticed a small dark spot on my son's knee. I tried to squeeze it thinking it might be dried blood from falls. But it just stays there. Oh man...again


I am so frustrated.

There are white patches in my throat. Is that the yeast infection?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32672
   Posted 5/11/2018 9:00 PM (GMT -6)   
Confused2910 said...
I did the MRI. It's normal.

Finished 3 weeks of doxy. But all the symptoms are still with me. They are migrating. 4 days if muscle aches, armpit pain, then next 4 days it's the headache, then a week of genital itching and burning. Oh man. .

And I'm so so tired. I force myself to go to work, force myself to smile and talk to the co-workers. I somehow manage to swim in the pool once a week and go to the steam room. That's the only time I can relax.

Today I noticed a small dark spot on my son's knee. I tried to squeeze it thinking it might be dried blood from falls. But it just stays there. Oh man...again


I am so frustrated.

There are white patches in my throat. Is that the yeast infection?


Sorry, but I'm not surprised that the 3 weeks of doxy didn't result in symptom abatement.

Yes the white patches sound like candida.

i recommend you seek out a Lyme Literate Dr, so you can get on a good treatment.
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
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