Got some info back from my initial LLMD appointment..

[tbird2340]

My LLMD must have gotten all the bloodwork he ordered back as he sent me a letter with some info..

1. He ordered the IgM 31 kDa Epitope Test the day of my first visit.. It came back positive.. He attached that to a letter stating that I am positive for Lyme (which he already said anyways)..

I'm to continue taking Minocycline 2x daily..

2. My Candida test showed positive for mild infection. He provided a script for Nystatin 500,000 IU's 2 BID.

3. I tested positive for EBV (Epstein-Barr Virus). The letter is titled “MONO-EBV VIRUS” so I'm guessing I could have mono? He said to buy a good brand of L-Lysine 500mg and take 2 a day first.. If that doesn't help he will prescribe Valtrex..

I'm not sure about any of this but I know one thing.. I have been SOOOOO tired lately.. VERY hard to stay awake at work after lunch and if I'm not active active active after work and I sit down, forget about it.. My eyes are shut.. Today, I had to drive to one of our branches for work and I was struggling to keep my eyes open.. Maybe I have mono and that explains it?

Anyone ever have any issues with Nystatin? Any other advice / info for me?

Thanks everyone! 😀

[lynnie_sydney]

[user=851]tbird2340[/user] wrote:

Anyone ever have any issues with Nystatin? Any other advice / info for me?

Thanks everyone! 😀

Tom – you shouldnt have issues with Nystatin as it's a wash-out treatment and not systemic (like Diflucan). Liver is therefore not involved in breaking it down. Best with all this and hope you get some energy back soon. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Donna RA]

Tom,

I hope that positive test puts you at ease with the Doc.

I agree w/Lynnie, the Nystatin should not cause you any issues, I've used it in the past, just be sure you are taking your probiotic away from them, and don't skip the probiotic, you'll need to replensih your gut with the healthy bacteria.

I also tested positive for EBV virus, it doesn't mean that you have or don't have Mono though, it is the virus which can cause Mono.  I did use Valtrex for a few months, and also Olive Leaf, and Dr S tested again after 6 months, and the virus was no longer active. I understand this is not uncommon for Lymies.  As far as being tired, I can relate, and I think it is part of the whole myriad of problems that go along with Lyme and RA, afterall our bodies are struggling to become healthy, that sounds exhausting to me, no wonder we are tired.  You may want to ask him to check your Iron levels if he hasn't yet, perhaps there is something he can do to help you with energy levels. I'm taking B-12 injections, and taking complete B supplements, that does help out, and also CoQ10 is another energy producing supplement.  When do you see Dr S again?

Donna RA and Lyme

 

 

[Susan LymeRA]

T-bird,

Congrats my friend.  You are officially a lymie and Lyme disease sucks the life right out of you.  That is where the bone tiredness is coming from.  Honor it as much as you can.  Sleep will help you heal. 

EBV becomes active with lyme and is common to have both.  When I was first diagnosed I was fullblown mono.

Nystatin is very safe.

Lyme requires a fine balance between exercise and rest.  Be careful not to over exert yourself as it really sets you back.  Building your immune system will really help with the lyme.

Looks like Lyme is the culprit behind your RA.  The good news about that is putting lyme into remission should also put your RA into remission.  Lets hope so!

Susan

[tbird2340]

Thanks for the replies everyone! 😀

Donna, I go to Dr S July 28th I believe.

So for those that tested positive for Lyme who were originally DX'd with RA.. Are you basically just treating your Lyme and hoping it also takes care of your RA or are you seeing someone for Lyme and then someone for RA?

Thanks!

[Susan LymeRA]

T-bird,

I am so fortunate to have a rheumatologist who is also an LLMD.  She has found multiple pathogens in me that are together overwhelming my immune system and she is targeting each one of them.  She does classify me as chronic lyme.

When I first became sick, I kept asking each professional I sought out whether lyme mimicked rheumatoid, caused rheumatoid or actually was rheumatoid.

One dentist gave me the best answer.  He said “What is rheumatoid arthritis?  It isn't a bacteria, it isn't a virus.  It is only a name given to a disorder wherein the body is attacking itself.”

That is important to understand.  Once you realize that rheumatoid arthritis (or any other auto-immune disorder) is not something that is making you sick but rather is a label, a name given to the way you are sick, then you understand that RA is not what needs to be addressed.  Finding and resolving everything that is causing the disorder labeled RA is what will make you well.

My bloodwork reveals I have the following infections:  Lyme, Babesia(gone for now), H. Pylori (gone for now) EBV, HHV-6, QFever, Tapeworms, Yeast (gone for now) (3 parasites I don't have their names in front of me) Mycoplasma Pneumoniae(so far we have had no success clearing this and from what I research, there seems to be no easy fix yet) Chlamydia Pneumoniae (not cleared yet).

That is a lot of infections for my immune system to deal with.  Add to that list the  heavy metals test that revealed 3 x the highest acceptable limit of lead and highly elevated mercury and you can see why I fell into auto-immune world.

While that is a lot of infections, it also is a lot of opportunities to get well.  And I am doing extremely well with treatment.  I wake up each morning with no stiffness and praise God for my healing.

My belief that finding causes opens the door for healing is why I think it is good they found the Lyme in you.

Susan

[nspiker]

Hi tbird,

Welcome to the club….:?  Sorry you had to join, but know you will be on the road to feeling better!  I too was confirmed with a positive 31 epitope.

Many of us are positive for EBV.  I wouldn't worry too much about mono since lyme activates latent bacteria and viruses.  I'm positive for EBv, HHV-6, CMV, and Coxsackie.  There are some supplements that are good for viruses, like olive leaf, grapefruit seed extract and transfer factor.  I've taken Valtrex, and it had little effect, but had no side effects.

Nystatin, as others have said, is not hard on your liver, like Diflucan.  Personally, I prefer Diflucan, but you can see what works for you.

Get ready for the onslaught of multiple abx…it's so fun 😀
nancy

[Trudi]

[user=851]tbird2340[/user] wrote:

So for those that tested positive for Lyme who were originally DX'd with RA.. Are you basically just treating your Lyme and hoping it also takes care of your RA

Hi Tom–

That's what I am doing.  I rarely think of it as rheumatoid arthritis because my rheumatologist that I saw at the very beginning wasn't convinced that I had it–just an elevated RH factor which can occur for other things–in my case I'm sure the Lyme.  I think of myself as having Lyme arthritis.

Whenever I start or up new meds, I get very tired.  There were times at the beginning of treatment that I slept two hours in the morning, two hours in the afternoon, and all night long.  Of late I've been taking a long afternoon nap–according to everything I have read, rest is very key to healing.

Wishing you a speedy recovery–

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[mschmidt]

Tom,

I agree that the name of all the AI diseases are just labels.  What's important is knowing what you are dealing with because knowledge is power.  As far as feeling wiped out tired, that comes with the territory, and a signal that your body needs to rest.  Sleep is SO important when you're sick because it's the time when your body does the most healing.  YOU know your body better than any doctor so, the best advice I can give you is to listen to what it tells you, and don't overdo it.  I was extremely active before my SD hit, and although I remained active through the worst of it, I limited what I did, to allow my body the rest it needed to heal.  It wasn't until I rested and honored that (which I was terrible at prior to being sick–I would push myself to the breaking point constantly) that I became well again. 

I, too, tested high for EBV, although never had the fatigue with it.  I did have swollen glands for months, and a scratchy throat.  Unfortunately, old infections can be re-activated with autoimmunity, and is very common with Lyme.  Sounds like you have a good doctor that's at least testing you for various things, and addressing them. 

My LLMD put me on Diflucan instead of Nystatin because he believes it to be more effective.  However, I pulse dose it because it can be hard on the liver. 

My best advice is to make sure you're drinking lots of pure water, and detoxify, detoxify, detoxify.  I feel SO much better when I'm in the sauna, doing the olive oil/lemon drink, juicing, having a clean diet, and exercising. (although the exercising I slowly ramped up)

I hope you start to feel better soon.  Once you get on the right meds and routine, I'm sure you'll start to feel better.

Maria

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