Possible Lymes Disease?

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Hprice111
New Member


Date Joined Feb 2018
Total Posts : 4
   Posted 2/9/2018 1:57 PM (GMT -6)   
Hello everyone I've finally decided to make a post regarding my story.
I am a healthy 19 year old who has never had health problems. about a month ago I started having jaw discomfort, neck pain and stiffness, and shoulder discomfort all on my right side. A day later I started to get sick with a cold. This cold was weird because I felt so bad I thought I had the flu. Went to the doctor and I didn't have flu but she did some bloodwork (CBC) and everything was normal- no viral infections showed. The doctor still gave me some amoxicillin for a possible sinus infection. My cold went away after running its course but I went back to the doctor a week later for extreme fatigue, malaise, and nausea. The Doctor ran more blood tests and the only thing she found was that my vit d was 25 mg/nl which was a little low. I finished the antibiotics after 10 days and felt better except for some fatigue and anxiety?? I felt good for about a week when I started to go downhill again. I've been to the doctor 2 times since and one ordered an -MRI and the other tested for lymes. The test was negative but I am still very sure I have it. They also tested for mono which was negative. All my blood work has been fine. I've felt bad everyday for the past two weeks and here are my symptoms:
- flushed face/feeling feverish but no fever
- extreme fatigue
- Peeing a lot
- Upset stomach/constipation/diarrhea
- Joint pain in my back, shoulders, fingers & cracking/popping in my back, shoulders, neck, fingers, knees, wrists, ankles.
- Muscle tightness in shoulders
- Random ear pain/bad tinnitus
- Off and on sore throat & swollen lymph nodes & a lot of drainage
- Head tension/pressure headaches in the back of head (mild)
- Sensitivity to sound when symptoms are bad
- Bad lower back pain
- Waking up with hip pain and joint pain
- random chest pains
- Getting extremely tired and out of breath performing simple activities which causes my heart rate to rise
- Random muscle twitching all over
- Sleeping a lot
- off and on poor appetite
- Random shakes/tremors
- Cold hands and feet
- Increase in anxiety
- Depression/mood swings (never before been depressed)
- Itching a lot
- I had a weird rash on my legs after I showered the other day but it went away but it wasn't the bulls eye rash
I think I listed them all. They come and go and some days I feel worse than others. I know negative Lyme tests are common so I'm thinking of seeing an LLMD. Also- my father had lymes a few years ago but got it treated successfully. And I live in the mountains with a huge yard, hay field and woods surrounding my house. I also have a dog which we found a deer tick on about 2 months ago and he sleeps with me. I'm not sure if I've been bitten. I was hoping to get some opinions on possible lymes disease because I feel hopeless right about now. Thanks!

Post Edited (Hprice111) : 2/9/2018 1:05:02 PM (GMT-7)


Jasperilla
Regular Member


Date Joined Jan 2015
Total Posts : 220
   Posted 2/9/2018 2:19 PM (GMT -6)   
Hi Hprice -

There will be others along with more information than I have, but welcome! Sorry you have to be here though.

With everything you wrote, I think it's good that you have Lyme on your radar, and I definitely would recommend seeing an LLMD. Many of your symptoms are ones I had / have, and you'll find others who will say the same thing.

It will be recommended that you read through the sticky post at the top: "New To Lyme?....Start Here!". It's a lot of information, and a little overwhelming, but go through it as you can.

When I was going through diagnosis, the most immediate things I did that helped me was to clean up my diet by eliminating sugar, processed foods, and gluten, dairy, corn, soy, industrial oils (canola, soy, corn, etc.). That might be something for you to try while you're navigating all of this.

But most of all, get yourself to an LLMD and please ask questions here as they come up, it's a great group of folks! smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 2/9/2018 3:17 PM (GMT -6)   
Hi Hprice - welcome!

Well, those symptoms certainly could be attributed to Lyme disease.

I think it would be wise, as Japerilla mentioned for you to see a LLMD for an evaluation.

We can help you find one: Start new thread: "Looking for LLMD in/near_____" and fill in the blank with your location.
Then enable your email option (through "my profile") so members here can send you some names. we don't post the LLMD names on the forum for their privacy.

You can also email me...and I will see what I have listed for your location. Just click on the envelope under my screen name - on the left.

Additionaly, you can contact ILADS for referrals:

ilads.org/ilads_media/physician-referral/
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

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 2/11/2018 11:06 AM (GMT -6)   
Very similar symptoms to what I had when I first started suspecting Lyme. To confirm- You have had these symptoms for about a month? Mine went on for over two years before I started treatment.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2122
   Posted 2/11/2018 5:21 PM (GMT -6)   
Just stopping by to say Hi and welcome to our group.

Remember to ask any questions you need to and if your just having a bad day there is a lot of support here to help you get through it.

Take care and I wish you the best of healing, Jo

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 2/11/2018 6:02 PM (GMT -6)   
You have an infection of some kind that is multisystemic. MSIDs.

Based on your systems they sound very lymie. Please get tested for lyme and co-infections either through Igenex or Armin labs.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 2/12/2018 1:32 PM (GMT -6)   
Hprice,

Welcome! I have or had all those symptoms at some point, including the flushed face that I've rarely seen others talk about. Your symptoms sound like Lyme PLUS bartonella and babesia to me. When choosing an LLMD, I highly recommend you choose one who knows and treats coinfections and takes them seriously.

My impression is that coinfections tend to cause the most problems and complicate treatment. Some doctors overemphasize the Lyme and treat coinfections as if they're rare or relatively benign. Just so you know, testing for coinfections is even more unreliable than testing for Lyme, and a really good, knowledgeable LLMD should be able to clinically diagnose you should tests come up negative.

Hprice111
New Member


Date Joined Feb 2018
Total Posts : 4
   Posted 3/3/2018 11:07 AM (GMT -6)   
Thank you all for replying and for the support or advise! I'm still trying to find an good LLMD in a reasonable range around me- I live in the mountains of NC, which from what I've studied and heard it is a Hard state to get good treatment. As an update- about to be at the two month point of these symptoms. Still have good days and bad days. An emotional roller coaster with days of feeling hopeless. Doctors don't seem to know what's wrong with me. Had a negative western blot, but I'm still thinking it's lymes. The only thing showing up in blood testing is low vit d and high ASO titers but I haven't had a recent strep infection??? Started on a month of doxycycline because my GP thought it could be lymes too, but stopped after a few days to start on amoxicillin for strep?? After I took the amox the titers went even higher?? At this point I'm suspecting either: lymes & co infections, some sort of vitamin deficiency along w the low vit d (going to ask my doctor to test me), early MS, or a relapse EBV mono that hasn't showed up in my bloodwork yet because it's too early (had it two years ago and doctors had to test me 4 times for it to come back positive). My fatigue is my worst symptom- it's awful!!!! I can sleep 13 hours every night. My school work is falling behind because I almost can't attend class anymore. I just want answers right now. My eyes are also starting to be effected- lots of eye aches, floaters, and snow vision- mainly when I feel my worst. Also think I might just need my tonsils out because my sinuses are so bad all the time. Thank you all for listening and replying- it helps me a lot!

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 175
   Posted 3/3/2018 11:22 AM (GMT -6)   
Are you taking vitamin D? Low levels can be a Lyme symptom. Zinc and its ratio to copper is also important for regulating the immune system.

helpwithlyme
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/3/2018 11:40 AM (GMT -6)   
Sounds like it to me.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/3/2018 5:20 PM (GMT -6)   
Hprice,

I read through your entire post again. You have a LOT of symptoms that sound like Bartonella to me. The bartonella gurus are right there in your state. Take a look at this: /www.northcarolinahealthnews.org/2013/12/05/bartonella-is-everywhere-so-why-dont-we-know-more-about-it/

If you're interested, you can start treating yourself with herbs until you get a doctor. Many of us are doing Stephen Buhner's protocols for the infections. He has books on Lyme and all the major coinfections that are some of the best reference resources around and details full herbal treatment protocols for each infection, as well as herbs that can help with specific symptoms.

Based on your symptoms, some good herbs to start with would be Japanese knotweed, eleuthero, danshen/skullcap combo, and IHA formula (isatis/houttynia/alchornia) or sida acuta. Woodlandessence has all of these herbs. These can be used with antibiotics if you choose to use antibiotics once you get a doctor.

TONSILS:
I would not be in a rush to remove any body parts unless there is a medical emergency. God put those parts there for a reason, even if doctors do not know what that reason is. Bartonella causes swollen glands. Red root and salvia miltiorhiza (danshen) are excellent herbs to reduce swelling in the glands. The longer you deal with Lyme and coinfections and the more you educate yourself, you will learn all sorts of things mainstream (and even alternative) doctors do not know and cannot tell you.

Zita27
Regular Member


Date Joined Feb 2018
Total Posts : 29
   Posted 3/3/2018 5:29 PM (GMT -6)   
Sounds like Lyme. Be careful when you go to test for Lyme. The test are 40% accurate. I got false negatives for months before I learned of testing through IGenx Lab. tested positive. Make sure you get test through IGenx or you can test with Galaxy Lab for Bartonella. Go see a Lyme literate of functional medical doctor. A western Dr is clueless about Lyme and testing.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/3/2018 6:41 PM (GMT -6)   
Hprice,

I just now picked up the part where you said you had mono 2 years ago. When we get Lyme, it is very common for viruse to get reactivated. Buhner also has an Herbal Antibiotic book and an Herbal Antiviral book. He does have a treatment regimen for EBV. If you're interested, just let me know. Buhner's book indicates EBV can cause severe fatigue and very painful sore throat.

Mycoplasma pneumonia also causes significant fatigue and is often part of the lovely infection mess we get.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 3/3/2018 8:18 PM (GMT -6)   
Hprice111 said...
Thank you all for replying and for the support or advise! I'm still trying to find an good LLMD in a reasonable range around me- I live in the mountains of NC, which from what I've studied and heard it is a Hard state to get good treatment. As an update- about to be at the two month point of these symptoms. Still have good days and bad days. An emotional roller coaster with days of feeling hopeless. Doctors don't seem to know what's wrong with me. Had a negative western blot, but I'm still thinking it's lymes. The only thing showing up in blood testing is low vit d and high ASO titers but I haven't had a recent strep infection??? Started on a month of doxycycline because my GP thought it could be lymes too, but stopped after a few days to start on amoxicillin for strep?? After I took the amox the titers went even higher?? At this point I'm suspecting either: lymes & co infections, some sort of vitamin deficiency along w the low vit d (going to ask my doctor to test me), early MS, or a relapse EBV mono that hasn't showed up in my bloodwork yet because it's too early (had it two years ago and doctors had to test me 4 times for it to come back positive). My fatigue is my worst symptom- it's awful!!!! I can sleep 13 hours every night. My school work is falling behind because I almost can't attend class anymore. I just want answers right now. My eyes are also starting to be effected- lots of eye aches, floaters, and snow vision- mainly when I feel my worst. Also think I might just need my tonsils out because my sinuses are so bad all the time. Thank you all for listening and replying- it helps me a lot!


I have some LLMD's in NC. One comes with a good review and takes 'some insurance' .

Did you get any names from me before?
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

Hprice111
New Member


Date Joined Feb 2018
Total Posts : 4
   Posted 3/13/2018 12:28 AM (GMT -6)   
Hello all, thank you so much for your replies!!! A little update- I'm still on an emotional roller coaster- I have noticed that I'll have a couple good days where I can go be a somewhat normal person again and other days I can barely even leave my bed. When I'm at my worst my main symptoms are- fatigue that makes it even hard to wake up and stay awake, tinnitus, visual snow, eye pain, headaches, stiff shoulder and neck muscles, extreme malaise, and feeling flushed/hot, and just completely out of it. I have also noticed neck/throats pain and discomfort in the front of my neck (which kinda freaks me out). Mornings are the hardest as my symptoms are the worst then, but I've noticed getting out of bed and making myself (when I can) get up and start my day and moving around helps usually!!! I am currently having awful tinnitus and fatigue. I am trying my best to stay positive and hopeful, and really appreciate the good days smile even though some days that is almost impossible. I am still suspecting lymes & co and so is my mother. Coincidentally- in the last 2 weeks I have known many people that have found ticks imbedded on their skin & also heard of many people around my community that have gotten their dogs tested for lymes and came back positive- even more proving that lymes is well alive in my area as I mentioned before my dad had it a few years ago and successfully treated it with one round of doxy. I am going back to the doc this week for more testing (thyroid again, other vitamins since my d was low, EBV again, liver enzymes since they were elevated the last time I went, and ASO titer to see if anything has changed). Doctor wants me to start a month of amox, but I'm currently letting my tummy heal from the last round for my "strep". Went to the eye doctor because of floaters and eye pain just to make sure nothing was wrong & doctor said my eyes looked great- just a little dry. Have an appt with ENT in 2 weeks, and neurologist in 4 weeks. I am still just mainly wanting answers right now and pray I can get some soon! I appreciate all of you and all the advise & hope we can all start healing!!!!smile

Current supplements meds- 5,000 vit D3 a day, multivitamins daily, magnesium 250 mg daily, lubricating eye drops to help dryness which seem to help some with pain, probiotics once a day, getting ready to start amox for a month, and only taking Advil on my worst days but trying to get used to the pain without it!! I am going to start taking zinc daily too as I did when I had mono, and it helped my immune system tremendously! Also- starting to cut gluten out of diet to see if I have improvement and plan to slowly start exercising again to help with the fatigue. (Sorry for the long post)

Girlie- I have not gotten any- I would love some if you wouldn't mind to message me!!

Also everyone- can anyone tell me more about the IGenx lab testing? I am very interested, as I am certain my doctors office tests their through lab corps which I've heard is very cheap testing.

Post Edited (Hprice111) : 3/13/2018 12:37:37 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 3/13/2018 1:56 AM (GMT -6)   
You need to send me an email - yours' isn't enabled.



Igenex - The best bang for your buck: Lyme WB Igm and IgG for $250.


Call them and they'll send you a test kit. You then take the lab req to a dr. for signature. Get the blood draw, send off to Igenex via Fedex. Three weeks (or a bit longer) later, you have the results.
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

Glascis
Regular Member


Date Joined Oct 2017
Total Posts : 55
   Posted 3/13/2018 10:09 AM (GMT -6)   
Welcome HPrice.

A good screening tool that my LLMD uses and swears by is the Horowitz MSIDS questionnaire. You can easily find it online through a Google search.

A study found that this questionnaire was able to significantly determine Lyme sufferers - however please note Horowitz himself was an author of said study.
https://www.ncbi.nlm.nih.gov/pubmed/28919803

Hprice111
New Member


Date Joined Feb 2018
Total Posts : 4
   Posted 3/13/2018 2:47 PM (GMT -6)   
Girlie- okay I'll email you! I will start looking into the Igenex test!! Thank you for your info.

Glascis- I have taken the questionnaire a few weeks ago and scored over a 46 (I believe that is the number that said you have a high possibility of a tick born disease) and also took it earlier today and scored an 80... gives me hope that I will get a positive test or a diagnosis soon!! Although it will be tough to recover I would be happy to at least be diagnosed with lymes so I know something worse isn't going on! Thank you for your reply!

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 618
   Posted 3/13/2018 3:13 PM (GMT -6)   
Hprice - I am in NC as well. There is a very good LLMD with a practice in Asheville. She works with one of the leading Lyme doctors in the nation, Dr J in DC one week a month. The rest of her time she is in Asheville. If your email is up on your profile, I can email you her info.
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