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Has it been lymes all along?

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Posted 10/30/2016 1:48 PM (GMT 0)
For the past 4-5 years, I have had symptoms that I thought were MS, but am notw strongly concerned about Lymes, given not on my symptoms but blood tests done recently and 8 years ago.

Let's go back 8 years, to 2008, when I was ACCIDENTALLY tested for Lyme Disease via the WB. I had no symptoms, and it was done accidentally by a gynecologist (she meant to do it for something else). In 08 I had absolutely no symptoms of Lymes -- NONE-- but spent the first half of my life in camp and as a camp counselor. So, in '08, my WB was positive on the IGM with bands 23 & 39, and indeterminite for the IGG (w/ some nonspecific bands). I dont have those bands written down unfortunately, and can't locate the labwork, but I'm certain I had 23 & 39 on IGM and was positive there. I don't remember why I was able to put this out of my head (because I was a big worrier), but maybe I talked to a doctor and was talked out of it. Unfortunately, I really don't remember. Again, I had no symptoms at the time and had other stuff going on.

Now, flash forward to 2011. I got a bacterial infection and went on antibiotics for 1 week. This led to chronic yeast infections and MS like-symptoms. Ever since that antibiotic, I have been having relapsing-remitting symptoms of something on nd off for the past 5 years. THe first "flare" was the worst and lasted months. I usually only have 1 bad "flare" a year, and it is always in the fall. Sometimes, I will have some of these symptoms at a much smaller scale at other points, but the more debiltating flares are are almost always in the fall.

My symptoms are tingling in all 4 extremities, achyness in my extremities, fatigue, dizziness, headache, and nausea (only in the beginning). With other "flares" there were some visual disturbances, but I don;t have that this time.

When I was tested in 2011 for Lymes I think I was negative. I worried about MS for the last 5 years-- I was married to it, but all MRIs and tests for it have been negative. I am realizing now I think I latched on to the wrong illness. I also blamed my chronic yeast (candida) for my symptoms, and totally forgot about my '08 Lymes results.

Because my yearly "flare" just happened, I just went and got a slew of bloodwork, and my doc ordered lymes. Lo and beyond, the IGM AB was high at 1.09, and I tested positive for IGM band 23, only. My doc said I didn't meet the criteria for lymes and definitely don't have it. I forgot to tell him about the old IGM test, but I guess the standard medical thinking is it should turn IGG positive, and never did. Based on what I am reading, the fact that I have band 23 is very specific to BB, and nothing else. I am not sure what to make of all of this, and my last "positive" test when I had NO symptoms then. Is it possible I have had Lymes unknowingly, without symptoms, for years on end, only for them to show up later? Because given my test results, I would have had to have had Lymes since at least 2008 (with 3 years of no symptoms)-- and likely way longer than that because I lived in NYC at the time, and prior to that spent a lot of time in camp, which I would think is when I would have been most likely to get it.

The testing is what most concerns me. I do not understand how I could have Lymes with no symptoms for years on end only for symptoms to randomly show up years later after an antibioitc...is that possible???

I should also mention that I already have an autoimmune disorder-- Addison's Disease'-- which I've had for the last 20 years (I am 32, and have had this since age 12).
Posted 10/30/2016 2:29 PM (GMT 0)
Hi Jabele!
Welcome to our community! I'm so glad you found us.

Many doctors that are not specifically educated about Lyme, won't have a clue about the testing and how unreliable and faulty it really is. Bands 23 and 39 are both Lyme specific bands, which means nothing else turns them positive but Lyme. So you do have Lyme disease.

This is backed up by your repeated tests that continue to show that antibodies to Lyme are being produced by your immune system. Often people will get some negative tests (no Lyme specific bands are positive or IND), but once a person tests positive on the Lyme specific bands, without proper treatment, the infections are still there and still doing damage.

I'm so sorry to hear about how long you have lived with Addison's. I've had severe adrenal issues, but have managed to address them just barely before I reached the stage of Addison's. It has greatly compromised my ability to heal, as treatment and the stress of treatments hits my adrenals and drags them down as well.

As for the symptoms only showing up from time to time, that's not as uncommon with these infections as many would believe. I was infected at the age of 7 and lived for the next 37 years with symptoms changing and being at varying degrees of severity, from not hardly knowing I had any symptoms to having symptoms so severe that I was bed ridden for a month or two at a time.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org



​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf
Posted 10/30/2016 3:43 PM (GMT 0)
Jabele,

Welcome to HW. I'm glad you found your way here. The moderators are the best. They are lyme angels who help all of us and will help you navigate through this very confusing disease. Sounds to me like you definitely have lyme. Sorry you have been misdiagnosed for so long but you will come to learn that many on here have been. Detox, listen to the moderators and you will finally start to get well. This is also a great place to vent and ask questions. We're here for you. Welcome.
Posted 10/30/2016 3:55 PM (GMT 0)
Thanks so much for getting back to me. I wish I had taken it more seriously when I saw that in 08. I guess its not uncommon then to get it and only get symptoms years later. I'm going to call around for a LLMD asap. Do you think at this juncture they will want me on antibiotics? My mom was saying something about how lymes can lodge in different parts of the body and where it lands can affect the way the disease plays out. Is that true? I guess I'm just surprised that if I've had lymes for at least 10 years, I only feel really sick for like a week a year (except in 2008)
Posted 10/30/2016 4:04 PM (GMT 0)
Jabele,

Trav will guide you in the right direction for your question. I will say that my son has probably had lyme since he was seven years old (14 now) He had a tick attached to his ear (two on ear within one year). I had him tested immediately and it came back negative both times. Knowing nothing about lyme, and that the tests would be negative because it was so soon, I just figured he was fine. It can be dormant for many years. His symptoms really started last year but I still wasn't thinking lyme because they were so different than 'lyme symptoms' I had heard of. I even asked his pediatrician repeatedly if it could be lyme and she said no. So it probably has been dormant for you and has now woken up. Be glad you know now so you can treat it. Good luck.
Posted 10/30/2016 4:09 PM (GMT 0)
Well, your mom got it partly right. The bacteria do disperse throughout the body, and will affect (not attach) the weakest points in our body. For me, the most significantly affected area was my gastrointestinal area, although eventually every part of the body can be compromised, if the infections are given enough time.

There are many treatment options, from natural protocols to protocols that use only abx (antibiotics). Many here use more than one type of treatment.

While it's somewhat uncommon for a person to only be affected for a week or so each year, I have talked to others that have also experienced this. This is likely because the body still has a strong enough immune function to keep the infections mostly at bay, but because you experience these "break through" periods of symptoms, your body is telling you that it's not quite able to get it and keep it under control. So you need treatment to help your body heal so you don't keep going through this each year - and so you don't one day end up with more symptoms and really sick because your body simply can no longer hold it all in check.

Whether you use abx or more natural treatments is completely up to you - and the type of doctor you choose to use. I would encourage you to use a LLMD/LLND though as the extra training is usually necessary for them to understand the complexities of the infections and how to help you heal.
Posted 10/30/2016 4:36 PM (GMT 0)
I can't thank you guys enough. While it's upsetting to hear, I'm partially relieved to give a name to my mysterious illness so I can treat and try to move forward. To your point, I've had my immune system tested and it's REALLY strong so I guess I was able to hold it down for a while. Whenever I overexert I tend to have flares so it makes sense. I'll let you guys know what my future LLMD says and recommends....hoping I can get an appt with someone soon
Posted 10/30/2016 4:44 PM (GMT 0)
There are things you can do while you wait for your appointment. First be sure to ask to be put on the cancellation list so that you will get a phone call if someone cancels their appt.

You can also start detoxing and making sure you are eating a very healthy diet. No sugar (you can use stevia, honey, xylitol), lower carb, and lots of good veggies. No highly processed boxed or take out foods either. Whole foods will help provide your body with the nutrients it needs to heal.

Please do keep us updated, and feel free to ask questions here!
Posted 10/30/2016 4:50 PM (GMT 0)
Jabele,

I got into my LLMD by calling every single day. It was a three-four month waiting list. I got my son in this week and he had a December 20th appt (and they gave that one early because he is a kid). I also got his IgenX tests back in three weeks because I called every day. So please listen to Trav. Don't think you are bothering them - if you are nice, and ask nicely they will work with you. I would say "I know how busy you are but I am fairly close and if you have ANY cancellation I will change things around to get there." It works. Keep us posted. What state are you in? I know a bunch in NY/Upstate area.
Posted 10/30/2016 5:08 PM (GMT 0)
That is great advice. I already eat very healthy-- did candida diet for years which likely helped, and still maintain that now though more like 80/20... i never have sugar and limit bad foods to 2x a week. I may cut that even further.

Thanks Huddie..I live in South Jersey, about 30 mins from Philly but am from NY originally (long island) which is likely where I got this. I sure loved camp...

So I'd be willing to go to NY for sure. I'll drive a distance to see whoever will see me 1st.
Posted 10/30/2016 5:16 PM (GMT 0)
Jabele,

I grew up on LI too. So many young adults are going to get lyme from camp. Every kid I know goes to camp for two-four weeks in Maine or New Hampshire since they are around 9-10 and they are outside in grass all day. As they should be. No one checks. The last few days of camp this year my son spent in the infirmary with fever and rash all over. Doctor in Maine said Coxsackie. I have since learned that Maine and NH are on the top of the list for Lyme - you would think they would know this stuff. I had NO IDEA.

If you can get into Manhattan I recommend Dr R (there is an X in the middle of his name). Google Lyme Resource Medical 566 Seventh Avenue and you will crack the code. He is wonderful. Long wait but they have cancellations. Keep us posted.

We aren't allowed to name doctors on here.
Posted 10/30/2016 5:30 PM (GMT 0)
Found him...thanks so much! I will definitely stay in touch with you all
Posted 10/30/2016 5:42 PM (GMT 0)
Great! Bring all your test results. Type up a list of symptoms and current symptoms and everything you take. This will make his assessment faster. He muscle tests for lyme, co-infections and herbs so bring anything you are thinking of taking. He is a wonderful and caring man. That said, once you leave it's hard to reach him and he is very, very expensive so write down every single question you can think of. He is open to herbal and alternative treatments. I found that he didn't push anything on me and I liked that.
Posted 10/30/2016 8:22 PM (GMT 0)
I also wanted to ask...so I have been suffering with chronic yeast/candida issues ever since the lymes symptoms started. I'm guessing there is a connection...does untreated lymes cause candida as coinfection? Or perhaps its the other way around. I'm most concerned about antibiotics as that was what seemed to cause my yeast problems and other symptoms. I know many folks have candida issues AFTER they start treating because of the antibiotics. Ive done some herbal antibiotics which did not flare yeast though. I guess I'm wondering if addressing the lymes will help the yeast, or will it continue to be an issue? Yeast is my #1 complaint bc its constant. I take voriconazole regularly which keeps it at bay but ovulation really spikes my yeast
Posted 10/30/2016 8:36 PM (GMT 0)
Jabele,

What is your diet like? I did a full candida diet (before lyme). It's very strict. No dairy, gluten, sugar, alcohol, processed foods. Bascially just lean protein and vegetables. No animal protein for first month and no fruit. You can also take SF722 (I think that is correct), monolaurin, and a strong probiotic.

I don't know enough about lyme to know if candida is a cos but the mods will know.

Good luck.
Posted 10/30/2016 8:46 PM (GMT 0)
Thanks Huddie. I did 3 yrs of very strict candida diet (2012 to 2015). All I ate was veggies, org chicken and fish, and not much else. In the last year, I expanded my diet a bit because I thought 3 yrs was eno time that it should have worked. Also had a naturopath and was on tons of anti yeast supps, including sf722 to no avail. I took the diet too far and was beyond miserable. I thought i was so sick with candida that i started doing some weird detox bowel cleanses that put me in the hospital which was a turning point for me. I took it too far and it didnt really work. When I let myself cheat sometimes, I felt much happier and healthier, prob bc im less stressed. So currently I eat lots of salads, yogurt, berries, veggies, lean meat and fish, but I do cheat a bit on weekends and will also drink a vodka club here and there. When I take take the vfend it knocks all the yeast out and I'm able to cheat a bit, and I've felt mentally better this past year with the help of zoloft
Posted 10/30/2016 9:03 PM (GMT 0)
Hi jabele sorry ya i was told i had als ...consider bee venom therapy ...
here is a video of darkfield blood from a guy the told him he had ms too

/www.youtube.com/watch?v=fJBBHZSCdb8&feature=youtu.be
Posted 12/5/2016 7:23 PM (GMT 0)
Ugh! So frustrating. My doc said the Igenex came back indeterminate, and that I'm as grey as you can get.

I didn't get to see the actual results, but I inquired, and he said I had 2 bands come back positive on the IGG-- 31 & 41.

I guess 41 isn't specific. If I had 2 specific bands, it would have been positive for IGG, right?
Posted 12/5/2016 8:41 PM (GMT 0)
I was Indeterminate through IGeneX too. 31 is pretty Lyme specific (I had it too).

I was later tested with c6 ELISA and it came back highly positive. I also recently sent a urine sample to DNA Connexions - which is a urine PCR test that looks for Borrelia and some coinfections. Pricey ($500) but it tests for 11 things I believe. Dr. Klinghardt, a well-known Lyme doctor, is now using this test. He recommends getting a deep tissue massage prior to urine collection. The company suggested exercising. I did both.

Testing is horrible.
Posted 12/5/2016 8:43 PM (GMT 0)
I just read this which was interesting. perhaps I should push for the epitote test.


"Antibodies to the OspA antigen banding at 31kDa is present in vaccinated patients and in late stage Lyme disease [28,29]. A large number of serum samples from patients with symptoms of Lyme disease have only bands at 31kDa and 41kDa on either IgG or IgM WB. We reviewed results of Osp A confirmation test results performed on 500 patients with bands 31 and 41kDa on IgG and/or IgM WBs. about 50% of the patients were positive by the Osp A confirmation test. The negative patient samples probably had cross-reacting antibodies to a non-specific BB protein that co-migrates with Osp A at 31kDa. While the truly positive samples would be missed if band 31kDa is not included, the confirmation test was able to resolve a large number of false-positive results. We also observed that 30% of the patients with IgM antibodies to EBV had band 93kDa present with or without band 31kDa on the IgM WB. Removal of band 93kDa from IgM WB interpretive criteria did not affect sensitivity of IgM WB. Thus, the interpretive criteria for Lyme WB have been changed. The in-house WB is considered positive if two bands from the following six bands are present: 23, 31,34, 39, 41 and 93kDa, with the following exception: indeterminate if only bands 31 and 41kDa or 31 and 93kDa are present; and IgM WB is considered negative if only bands 41 and 93kDa are present."
Posted 12/5/2016 9:02 PM (GMT 0)
Also, I just had them send me a copy so I was able to look at it.

The IFA test was done, and my results was 40. <40 is negative, 40 is equivocal, and positive > or = to 80. So of course, I'm right in the middle. UGH.

I had one + sign under band 31, and two ++ for band 41. I am thinking the confirmation test could help. Anyone go through that, and have their findings change?
Posted 12/5/2016 9:04 PM (GMT 0)
Btw, i did do epitope test.
Posted 12/5/2016 9:06 PM (GMT 0)
Did your epitope test show that band 31 was lyme specific?
Posted 12/5/2016 9:13 PM (GMT 0)
Yes
Posted 12/5/2016 9:21 PM (GMT 0)
Oh interesting. I called and asked my doctor if they will do it. Honestly, I think it would be more for myself...my doctor seems to think "I probably have lymes" since i had some positive coinfections come back (RMSF & babesia). Also, I'm currently treating w/ abx. My CD57 was 56, which he didn't seem to think much of, but from what I'm reading, that's low and also indicative of chronic Lymes. Add that to my + IGM western blot 8 years ago (done by accident).

I have felt like a crazy person for so long, it's hard for me to believe that I may actually have a real condition and am not just completely nuts (as I do tend to be a hypochondriac, and this stuff is somewhat "out there" and mainstream docs don't agree.)
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