And Another Suspected Lyme/Bart Story

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/5/2017 4:25 PM (GMT -6)   
First things first, greetings everyone. I am sorry for the reasons that brought you here, but am so glad to find a safe place to mingle with others who share my fears and experiences. Family and friends certainly don't get it.

Where to begin, I have not felt well or like myself for many years, but standard lab work almost always turns out normal, with the exception of a mildly elevated CO2/blood calcium level here and there. I have been uninsured for a long time, so I have just learned to live with my complaints. Initially, I suspected adrenal fatigue, but all of the necessary treatments backfired and would exacerbate my symptoms, my body is just too sensitive to everything. I finally have health insurance and my symptoms have appeared to have progressed, so I recently found a naturopath who diagnosed me with SIBO, and was the first to suggest Lyme when I discussed my neurological symptoms. I thought no way, I was never bit by a tick.

I don't have the funds to pay for a Lyme test quite yet, so my doctor started me on Allicin, Berberine, and Neem to target the SIBO first (with the hopes that will resolve all my other symptoms). Initially, I started to feel a bit better on the Allicin, but after a few weeks, I added the Berberine and became quite ill and developed what appears to be a bartonella rash. I have raised white lines on my bum that itch like crazy, and my back became extremely inflamed with the classic red scratch marks, as well as lines that look like indented scars ALL OVER. I sent a photo to my doctor and he confirmed that it appears to be a bart rash. I notice these marks appear after a hot bath, and I constantly have red marks or a rash on my skin, along with tiny blood prick dots on my arms (babs?).

Other symptoms are:
Frequent urination.
Dizzy spells where I feel close to fainting, frequent lightheadedness, feeling dissociated.
Ankle, foot/sole, upper/middle back pain, which can be debilitating.
Melasma, pretty bad that is not responsive to treatments.
Developed cellulite everywhere, including ankles and wrists, despite being thin at 110lbs
Vericose veins everywhere.
Major dental issues, including all my teeth shifting, plaque on teeth and developing a strange orange color, multiple root canals on one tooth that doesn't resolve sensitivity, a crown shifting that should not be, dentist commenting that my tooth crumbles when drilled, TMJ, bruxism.
Pins and needles feeling in hands.
Intolerant to cold/constantly feeling chilled or feverish.
Eyes burning and redness, diagnosed with Thygeson's disease.
Beu's ridges on nails (horizontal ridges) with a yellowish tone.
Hair is a ratted, dried out mess, and falling out at temples. Always pulls orange when dyed.
Brain fog, can't think of words, or reversing numbers.
Losing balance when closing eyes.
Scalloped, swollen tongue, making it difficult to speak and biting tongue.
High B12 in blood without supplementing (not properly utilizing), and low ferritin.
Body hair grows in weird patterns on legs.
Sore throat, runny nose, blood in mucus when spit.
Poor sleep quality. TIRED in the morning and throughout most of the day, and then feel better late at night.
38 feeling like I'm going on 80.
Vomiting/nausea.
Lips dry and peeling.
Combo of good days and really bad days.

I am 99% sure I have bartonella (praying it's not from my kitty), do you folks think there is a good chance I also have Lyme or another coinfection? I am wondering if most of you are able to treat the lyme and continue to work. I am feeling pretty down about what may lie ahead if I have to treat because I feel like it will be a LONG road ahead/my body responds pretty violently to treatments, and I don't have the luxury of not working. I have had to discontinue my herbal SIBO treatments simply so I can continue working.

Thank you for taking the time to read this and offer your support and insights. Happy healing to all of you!

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 633
   Posted 10/5/2017 5:10 PM (GMT -6)   
Hi,

Welcome to the community. Sorry you are here!

I had/have Bartonella, Lyme, and other co-infections. When I started treating the Bartonella, I also got the weird scratches. They would come out during my epson salt baths. I did 2 weeks of Rifampin plus Des Bios Bartonella Remedy. That did the trick for about a year. I recently started hitting my biofilms hard (per LLMD instructions) and low and behold, Bartonella came out to play. I am doing the Buhner herbs to hit it again. Berberine is one of those herbs. I took some today and yesterday and got a wicked headache. I may be in the minority, but I just don't think you can kick these infections without accepting a certain level of discomfort. My LLMD treated my SIBO with 3 days of Xifaxin and it was gone after that. You might want to try it (super expensive but only 3 days!!!!).

The great thing about Buhner herbs in a tincture form is you can literally start with 1 drop and go from there...I use Woodland Essences.

I would get up to speed on detox methods (read New to Lyme, start here! post). Also, get your doctor to check your methylation genes to make sure you can detox this stuff. Otherwise, that's another whole thing you have to deal with.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

Post Edited (cr3ativegirl) : 10/5/2017 5:14:39 PM (GMT-6)


CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/5/2017 7:08 PM (GMT -6)   
Thank you very much for the reply, Cr3ativegirl. It sounds like we share some common experiences. I am so glad you knocked out your SIBO. I read too many accounts of antibiotics not being successful or rebound SIBO, so went the natural route. I might consider xifaxin. I agree that some discomfort is a necessary evil when treating/herxing, but I work a stressful job where I'm talking all day with clients, and need to be on my A game.

I did read about Buhner's herbal tincture, do you feel it is as effective as prescription antibiotics? Also, if I'm treating naturally, could that throw off my test results?

Are you referring to the MTHFR mutation? I was thinking of testing for that, but also figure it might be a good idea just to assume I have it and treat accordingly.

How were you able to distinguish between Lyme, versus Bart, versus other confections, and to know which has or hasn't improved when there's so much overlap?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26270
   Posted 10/5/2017 7:09 PM (GMT -6)   
Hi and welcome!

Bartonella is usually self limiting - our immune system can take care of it unless the immune system is compromised.
I think you most likely have Lyme as well.

You don't always know when you're bitten. I never saw a tick bite and never had a bullseye rash but I did test positive for Lyme in addition to Bart.

You said you wanted the be able to work while treating.
Some of us can, but many can't. It all depends on how debilitating your symptoms are.

So with the symptoms you described - are you able to work with them now?
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

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/5/2017 7:28 PM (GMT -6)   
Hey there, girlie!

I appreciate the warm welcome and reply.

Something has ravaged my once close to perfect skin, and if it's not bartonella, or it's not typically a concern for people, then I'm going to agree that something else has to be going on.

In terms of work, I get by by the skin of my teeth. Meaning that I only work 4 days, and have my schedule arranged so that I work 2 days on, with one day off, then another 2 days worked, followed by two days off. The days I'm not working, I'm almost exclusively home/bed bound. Not the best quality of life. I seem to be very sensitive to cold weather, and recall catching a cold every other week last winter and am expecting the same this year. I have had to hold in my throw up and pee on more than one occasion at work, even contemplated diapers. Have also had several moments at work where the thought of passing out at my desk and having an ambulance called by a colleague utterly mortified me. Based on how I feel with the natural herbs, I really question my ability to work if I start taking stronger antibiotics. For you or those of you that are unable to work, are you on disability or SSI, support of a partner/family, or how do you get by?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26270
   Posted 10/5/2017 8:30 PM (GMT -6)   
Have you thought about having an Igenex Lyme WB IgM and IgG test done - total cost $210?


You don't have to treat with antibiotics...many people treat with herbals...or a combo of both.

I am unable to work...and am supported by my husband...but we can't really make it on his income.
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

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 633
   Posted 10/6/2017 6:51 AM (GMT -6)   
Sounds like its very difficult to manage your job. I think you might need to re-think possibly a new situation until you get things under control. Why do you think your boss/colleagues would be anything but supportive? Sorry if that is too nosy. There is a common thread among patients with Lyme, etc that they are type A, burn the candle at both ends, don't acknowledge their true feelings, etc. Your emotional state is directly tied to your health and you sound like you are in a fight/flight mode with your job and that could be contributing to your symptoms.

As far as my diagnosis, My doctor ran the Igenix and it came back positive (CDC negative). My co-infections were diagnosed by a technician/naturopath who does Electro-dermal Screening machine.

I looked at your symptom list and it is really nothing like mine, but that doesn't mean you don't have it. I had more classic Lyme symptoms. Still, I'm sure there is some pathogen/virus having a field day.

I had a lot of mold and candida problems, which symptoms overlap with Lyme. However, each disease seems to have one symptom that gives it away. For example, my foot pain was bartonella all the way. My candida, I know, flares when I eat sugar or drink a glass of wine. Lyme travels around, so any new weird stuff that lasts 2 weeks to a month, then disappears, I believe is Lyme. Burning tingling, horrible headache - Babesia....Its wack-a-mole with me. When I get my screening, she usually confirms my suspicions. I would highly recommend trying to find an EDS tech who is family with Lyme.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

HaleyBugs07
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 10/6/2017 10:21 AM (GMT -6)   
Hi Catlady18

I am new to the site as well. Exploring Lyme as a possibility to my strange symptoms. Having Western Blot test next week. Have done a ton of blood work and everything negative except for lower Vitamin D.

I too have a few similar symptoms you have listed:
Dental/Gum issues (which I never had until a year ago) teeth have shifted on the bottom and gums thinning and receding. Mouth always taste weird and a coating on my tongue (neg for thrush)
I am always super cold or have a hot flash
Skin has changed, blotchy and anything leaves a mark on it. (Ex carrying my purse over my arm will leave a huge indentation and mark that never used to.
I feel an overall thinning of my skin
Hair is dry/brittle, thinning and falling out (no amount of hair products are working)
I also tested high for B12 with no supplements earlier this year went back 3 months later and it did come down.
Fatigue
No joint pain but now alot of my joints are creek and crack when I move
depression and anxiety
hard to gain weight

Just wanted to share my symptoms as well since so strange and can't find answers. Hard to function some days and I have a 3 year old to take care of.

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/6/2017 2:13 PM (GMT -6)   
Girlie!

I am definitely going to go for the Igenex test through my doctor's office. My next appointment isn't for another 2 weeks. I've read mix info. about whether to test for confections or not, what are your thoughts around that?

I'm sorry you and your husband are struggling financially, but I'm also glad that you are able to take the time you need to focus on healing and recovery. I'm sure you would work if you could. No one would choose to have any of this. I hope you are also getting the emotional support you need.

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/6/2017 2:43 PM (GMT -6)   
Hi Cr3ativegirl,

I definitely think my work stress/driving myself is contributing to my illness. Part of that is totally on me, and part of that is my organization's current state of affairs and expectations. I work with great people, but our organization is in crisis and can't keep up with the demands, and it is not a work environment that is tolerant of absences. I have been there for under a year, and the expectation is that you prove yourself to obtain privileges later. One of those privileges would be to work from home part of the time, which would be helpful considering my current state. With that privilege also comes the expectation to maintain productivity. It's quite the conundrum, I need to work to pay for medical treatments in order to get better, but the work is exacerbating my symptoms. In theory, I could work elsewhere, but I am still accruing hours towards licensure, and there are limited options as a lowly intern.

Thank you for the recommendation about and electro-dermal screening machine. I have never heard of that, and I don't believe my current naturopath has that knowledge, but I will definitely find someone that does. I'm sorry it's such a roller coaster of symptoms for you. It's interesting that you can identify what is causing the flare. I am just curious what classic Lyme symptoms look like, could you share what that typically is? Oddly enough, on some level, I am going to be disappointed if I don't have Lyme because then it's back to the drawing board again. Candida almost seems inevitable with all the antibiotic use. Treat one thing, get another. I have thought I had it for a long time, but don't find myself sensitive to sugar or wine, and past treatments haven't helped. With all your knowledge and experience, I hope you have found ways to manage it all.

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/6/2017 2:54 PM (GMT -6)   
Hi Haleybugs,

Wow, it does sound like we have some of the same symptoms. Thank you for sharing your experience with me. Are you doing the Igenex test or the standard one? Please keep me up to date with what you find out, I know how frustrating it can be not having any answers. I get the purse mark as well and people would comment, but I never thought much of it. I can also relate to no amount of hair products working, and I've tried all the high-end ones like Kerastase and Oribe, plus internal hair supplements. Have doctors ruled anything else out like thyroid, etc?

I can't imagine how difficult it is with a young child, there certainly aren't any days off as a mom. I hope you get answers soon, and please continue to share your journey with me.

HaleyBugs07
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 10/6/2017 3:32 PM (GMT -6)   
CatLady18

I am going to have standard test through my primary care. I am looking into finding a Lyme doctor where I live. All other testing for thyroid and hormones have been negative. I thought I was having thyroid problems but tested a couple different times and found nothing. I really hate running around to all these doctors.

I will keep you posted as I learn more. The mouth stuff is really distressing!

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 633
   Posted 10/6/2017 4:37 PM (GMT -6)   
Classic Lyme (IMHO) is the joint pain, fatigue, muscle ache. I had like 80 symptoms off of Dr. Horowitz' questionnaire and you only need a 46. Maybe you should take it!

http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26270
   Posted 10/6/2017 4:53 PM (GMT -6)   
cr3ativegirl said...
Classic Lyme (IMHO) is the joint pain, fatigue, muscle ache. I had like 80 symptoms off of Dr. Horowitz' questionnaire and you only need a 46. Maybe you should take it!

http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf


Do you mean your score was 80, cr3ativegirl?
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

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 633
   Posted 10/6/2017 6:34 PM (GMT -6)   
yes, something like that. Maybe higher. I can't really remember it was so long ago.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/6/2017 10:59 PM (GMT -6)   
Haley,

Have you considered the Igenex test as well since they are supposed to be more accurate?

The dental stuff is very distressing. What do your dentists say and have you received any treatments or recommendations? I have been sent to an oral surgeon, endodontist, and prosthodontist and no one has answers, nor do they know what to do for me.


Cr3ativegirl,

Thank you for the test link. I scored 78. It was kind of hard answering some of those questions because the symptoms constantly change and wax and wane. I answered it based on within the last few months or so.

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/6/2017 11:56 PM (GMT -6)   
I have another question. My doctor suspects I may have picked up Lyme while living in Asia. Would the results appear on the US Igenex test?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26270
   Posted 10/7/2017 12:12 AM (GMT -6)   
CatLady18 said...
Girlie!

I am definitely going to go for the Igenex test through my doctor's office. My next appointment isn't for another 2 weeks. I've read mix info. about whether to test for confections or not, what are your thoughts around that?

I'm sorry you and your husband are struggling financially, but I'm also glad that you are able to take the time you need to focus on healing and recovery. I'm sure you would work if you could. No one would choose to have any of this. I hope you are also getting the emotional support you need.


If I had the money to spare, I would test for the co's. Originally, I only did the Igenex WB and was positive...so my LLND treated me for Lyme...but it wasn't until a year after that, he clinically diagnosed me with bartonella and started treatment. After over a year of that, I finally decided to do a test..that is offered here in Canada - a different LLND suggested it.
It was not expensive - $125 per infection and that included both urine and blood PCR.
I pulled a positive Bart (after over a year of treating it) but negative on Babesia. Treated Bart a few more months.

I am now treating Babesia...because I've plateaued on the lyme and bart treatment.
Even though I was negative...i could still have Babesia...the pcr can easily be a false negative.

Some LLMD's treat all three B's - Borrelia, Bartonella and Babesia.

Yes, I am getting lots of support. I am very fortunate that most of my family and friends are there for me.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26270
   Posted 10/7/2017 12:14 AM (GMT -6)   
CatLady18 said...
I have another question. My doctor suspects I may have picked up Lyme while living in Asia. Would the results appear on the US Igenex test?


Why does he suspect that?

I think that would be Borrelia Miyamotoi.
This is from the Igenex website - talking about what they do:

-Test more relevant strains of Borrelia species and other associated tick borne pathogens than other labs.

-Detect other related Borrelia species, like Borrelia miyamotoi, that exhibits Lyme-like symptoms.

-Have our own research and development team, who are experts in Lyme and associated tick-borne related diseases, and are relentlessly committed to developing new and improved diagnostic tests.

-Are hands on and develop our testing criteria in-house based on years of evidence and validation studies.
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

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 633
   Posted 10/7/2017 7:03 AM (GMT -6)   
CatLady18 - EDS techs that are good and know lyme are hard to find. I feel like I hit the lottery with mine. Email me and if you tell me where you are, I can see if I vet some of the people who offer it in your area.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

HaleyBugs07
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 10/7/2017 9:47 AM (GMT -6)   
CatLady18 - I am scheduled to have the WB test, it probably is not Igenex since it is through my Primary Care. I have to ask her which test it is. I am looking into a LLMD doctor in WI. I am still not sure this is Lyme but I don't know what else.

Up until 2 years ago I had no issues with my body or mouth. Back in 2015 started with a white tongue after 5 days of an antibiotic. Ran to the urgent care and got Nystatin which I figured would take care of it. Didn't do anything and I did two bottles of it. My Primary ran a test and negative for thrush. So I just started cleaning my tongue good with a tongue scrapper. That has never gone away.

In 2016 started developing weird symptoms starting with an ache numbing feeling on the side of my face close to the ear. It is not my jaw, so TMJ was ruled out. Then I noticed one of my teeth on the bottom hurting and looked in my mouth and saw a red indentation below the gum line. I was watching it and since I am now looking in my mouth I notice my gums thinning and receding (not just one tooth) but the whole bottom. I get discomfort in the bottom of mouth from one side to the other and more in the gums and below. Plus now my teeth are shifting and moving all on the bottom from the back teeth to the front, which I think is some of the discomfort I feel. The ache on the side of my face has never gone away either.

I have never had periodontal disease, just a few cavities filled over the years and cleanings regularly with no issues. I have no crowns or root canals and never braces. I have been to dentists, Perio's, Oral Surgeons, and ENT for my mouth. No one has an answer or really knows what to do. I have been advised to have extensive gum grafts, braces or do nothing. I am leary of gum grafts, super expensive and heard painful. Plus whatever is causing this, it has not stopped and I don't see a gum graft taking.

My mouth is sore most of the time, eating is more like a chore now. I eat alot of softer foods. Plus now I notice alot of plaque building up fast (as I get cleanings every 6 months). My mouth gets super dry at night and I wake up with a gross taste and feeling in my mouth that I never had before. I sleep with a humidifier and do alot of biotene. Sometimes get a burning tongue but that comes and goes.

With that I have just added on more strange symptoms over the past year and nothing goes away. My eyes are dry and diagnosed with inflamed eyelids and pinguecula (yellow spots in my eyes). Fatigue, creeking joints/back and neck, ringing in one of my ears, hair and skin thinning and dry, hard time gaining weight (I am only 110 lbs I was at a 118lb before all of this started)

So overall I have been to Primary, Rheumatologist, Endo, ENT, Dentists, Oral Surgeon, and Perio's with no answers. It gets very depressing and I have really bad days.

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/7/2017 11:30 AM (GMT -6)   
Girlie,

I think he suspects Asia because I was living out in the country there. I do recall getting bit by something and developed huge and painful welts (no bullseye). I think he may also not be aware that there are Lyme cases in my region. I was living and hiking quite a bit in the Bay Area, and there appears to be many cases in Cali. It seems like a lot of celebrities are getting it nowadays. Maybe I will reach out to Igenex to see what they have to say about international strains of Lyme. Thanks for looking into it.

CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/7/2017 11:31 AM (GMT -6)   
Also, I am so, so happy that you are getting tons of support. I imagine it is a critical part of the healing process.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26270
   Posted 10/7/2017 11:32 AM (GMT -6)   
Haley - I don't know if you will see this post...but you're correct - gum grafts are not recommended until you have the condition under control...
Why isn't it considered Periodontal disease?

Do you have the calculus on your teeth...or just soft plaque?

If it's calculus...and it's building up with the 6 month cleanings..you should go more often...every 3 or 4 months.

I had periodontal disease....mine is in remission and has been for several years now. It never reactivated when I got lyme (thank goodness).
I have some bone loss, and my gums have shrunk back...but that is actually good...because now they are easier to clean and no more pockets. My hygienist said that nature took care of it...the bone loss was already there...and the gums shrinking to match it means no deep pockets to try and keep clean.
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

Post Edited (Girlie) : 10/7/2017 11:36:20 AM (GMT-6)


CatLady18
New Member


Date Joined Oct 2017
Total Posts : 11
   Posted 10/7/2017 11:36 AM (GMT -6)   
Thank you, Cr3ativegirl, email sent!

Haley,

I am so sorry you are having so many issues with your teeth. I am not a doctor, but have you tested for Sjogrens, an autoimmune disease? I have actually read evidence that most autoimmune diseases are actually caused by Lyme anyway, so glad you are getting tested.
New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Tuesday, October 17, 2017 3:35 AM (GMT -6)
There are a total of 2,883,064 posts in 316,353 threads.
View Active Threads


Who's Online
This forum has 157478 registered members. Please welcome our newest member, bludee.
252 Guest(s), 5 Registered Member(s) are currently online.  Details
ValentineBaby, getting by, twister, straydog, kellyinCali


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer