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New Here - COMPLEX MOM/DAUGHTER LYME? With Hashimoto's, Autoimmune And More - PLEASE HELP - Dead End

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Posted 1/19/2016 10:26 PM (GMT 0)
It has been a long journey leading to this very post/moment – and I cannot emphasize enough how tightly my fingers are crossed that this forum is where my “next step” clue will appear. I know it is hard reading through a long, complex tale - but please, please read through it. Just writing this post was exhausting - I put it off too long because it felt like an impossible task to me at this "dead end" I've reached.

This is about my daughter and myself, with similar symptoms and stories – and my never ending search for a root cause, which COULD be lyme (or some co-infection which you also have expertise about). I have presented my reasons for this suspicion throughout this post.

So you know the voice behind this post, let me tell you about myself:

  • I rv full time with my husband (not wealthy, we chose a simple life – sold it all, etc. and live minimally by choice, cash only, etc.)
  • I am the type to shop the outside of the grocery stores – fresh meats/veggies....my daughter and I both eat quite healthy and natural as we can. Have said no to processed foods for over a decade, if not more.
  • Though history will show medical issue red flags for decades, I have been in search of the root cause of mine and my daughter's problems non-stop since July 2015 – I look like a PhD student these days (I mention this so you know I have been doing homework, studying the experts in all ailments, self-testing, etc.)
  • I support and respect everyone's choices as to how to proceed with medical intervention (everyone must follow their own path and I respect that completely), but I am long done with conventional medicine. Call it PTSD after catastrophic experiences where conventional med made me worse (I allowed them to take my gallbladder, total hysterectomy at a young age – and paid the price ever since and many more incidents like this). I seek answers on my own when possible – keep up on everything I can and lean toward holistic or naturopathic treatment and non-pharmaceuticals when possible. I mention this so you know where I stand as far as interventions I have tried/will try.
  • My daughter is 2000 miles away and I am paying out of pocket for basic tests – terrible insurance and most of this type of testing isn't covered anyway when you see a naturopath, etc. I have TWO people to test on a budget – I have to choose what I test wisely. She and I are best friends and I will put her first, but I think we are both dealing with the same thing

So in sum, I haven't stopped working toward solutions - and all roads since last summer led me here. Lyme is so complex and I am getting so weakened on this journey, I am hoping this forum is a soft place to fall and perhaps the experts are here to tell me this is not a dead end, it is a chance to turn a new corner.

So I will put out all of my daughter's most suspicious symptoms throughout her 21 years of life (I am 47), as well as mine. Keep in mind it was only recently where I started believing that all of this illness wasn't a coincidence - we didn't have tons of different problems, per se...we had tons of different SYMPTOMS – we had to find the root cause that was causing ALL of these problems.

HERE IS AN IMPORTANT CLUE before I get started – my daughter and I are “HEALTHY” in the sense we rarely ever catch colds, flu, etc. Yet our bodies are falling apart – there is autoimmune evidence everywhere. But again, she hardly ever had a sick day from school, while all of these “odd symptoms” would come up.

Here we go:

MY SYMPTOMS
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  • Healthy childhood overall – some memories of chronic diarrhea around high school age but never addressed by parents
  • Tick bite around 12 years old after camping in Michigan – stuck in my forehead (no recollection of illness or rash) – Lyme never considered, etc.
  • College years – started getting a lot of bronchitis and GI upset
  • 1994 – had my daughter – was severely fatigued and in bed first trimester - had pre-eclampsia at end of pregnancy...was induced...daughter healthy weight, no issues
  • 1996 – started having terrible GI problems...run to bathroom with diarrhea after eating anything – conventional medicine dismissed after GI, endoscopy, etc. Just “irritable bowel” - by 1998 was in ER and had gallbladder removed
  • 2004 – GI never got better after removal PLUS endometriosis discovered on ovaries, uterus...total hysterectomy and ovary removal in my 30's - so sensitive to Tramadol (I don't tolerate meds well) I went back in hospital with an ileus/blockage – straight into menopause (this is when natural healing began because I refused to take synthetic hormone, etc. and started taking charge of my health before I would lose more body parts). I will always regret these surgeries – a painful reminder which is why I stay the course on a more natural approach
  • 2007 – started getting weird illnesses – one was Ramsay Hunt (very rare) which I diagnosed myself and got confirmed through an enlightened doctor after 2 others ignored my claim and refused to test. I was also very tired, thinning hair, gaining weight (had been trim). This time I went to a holistic MD (good doc who worked with Jonathan Wright, if you are familiar).
  • Holistic MD discovered Hashimoto's back then, but my numbers weren't “terrible” - he had me do food sensitivity testing and I was off the charts for most normal foods, so likely leaky gut and possible celiac (like my daughter has). No gluten, eggs, dairy, casein and about 10 other foods. So I basically stopped eating, haha – and took levothroid, compounded estrogen/progesterone and began to heal. I looked great, felt great and others noticed, too. I thought I was cured forever.
  • Then I wasn't – I had never got a grip on my GI issues throughout all of this. I stuck to my diet, but it seemed I would swell like a balloon after eating anything. As this happened, I also couldn't tolerate my thyroid meds....severe anxiety, racing heartbeat, chomping my teeth......the only time I felt better was when I weaned myself off completely. GI issues still there but felt fantastic with NO thyroid meds now. The theory was that I healed, stopped the autoimmune attack, etc.
  • Fast forward to Summer 2015 – I was sure I had Graves! Racing heartbeat/tachycardia, out of breath with slightest exertion, anxious/panicky, insomnia. Also developed interstitial cystitis. I had to do something. Ordered all thyroid testing via ZRT, plus cortisol. TSH 24, Free T3 and T4 low normal, TPO antibodies over 1000! The journey began right then. Around the clock reading, researching, printing, filing. I found relief with increasing magnesium to slow the racing heart (worked great, thankfully). GI worse and worse. I could go on forever but here is how my path led me here:

    Hashimoto's Diagnosis July 2015 – what I did through today, in brief summation:
    Find root cause – likely leaky gut so must heal (tried it all, no help)
    Find root cause – likely food sensitivity/allergen (deprived myself of it all, no help)
    Find root cause – bacteria or pathogen – LAST MONTH tried PARASITIC CLEANSE..and GI PROBLEMS STOPPED IMMEDIATELY (30 days later still having evidence of “things” in stool) after years and years of diarrhea, frequent trips to bathroom, abdominal swelling even with just drinking bone broth.

    BUT HERE IS THE TRICKY PART – the parasitic cleansing is helping calm my GI system down...but now I am not feeling the swings of Hashimoto's – I feel like full blown hypothyroidism. How could this be? Did making a dent in the parasitic invasion calm my autoimmune attacks...and now I am feeling true hypothyroid? Sleepy, slower pulse, heart fluttering when lying down (not racing), slow metabolism...I feel like the poster child for hypothyroidism. Again, it was the parasite cleanse that made a quick, huge impact on both my GI symptoms AND my thyroid symptoms

    MY THEORY? I'm about to list my daughter's ailments, which lean more toward Lyme as you will see. DID I PASS THIS ON WHEN PREGNANT? IF I HAVE LYME, COULD IT BE POSSIBLE? I can't say it is Lyme – with Hashi the infections most common (when food elimination diet doesn't help) are epstein barr, yersinia, h pylori and lyme. But now look at her symptoms and you will see why I am leading toward Lyme. I have to start with the most likely candidate that covers us both, if I refuse to believe in coincidental/similar ailments...Lyme is the one where I feel I should put my limited energy and resources into.

    MY DAUGHTER'S SYMPTOMS – Keep in mind I mentioned she was always “healthy” with no colds or flu, but had odd things. I was a pure conventional medicine supporter back then, so I trusted whatever I was told.
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    • Diagnosed with celiac disease as soon as introduced to solid food as infant (had biopsy/endoscopy)
    • Get hives when overheated
    • Erythema Marginatum Rash on and off throughout life (don't even get me started, we were always told this was yeast! Imagine my surprise a few months ago stumbling on the photos and seeing my daughter's rash under Lyme discussions!)
    • Got folliculitis from hot tub when no one else did
    • Sweat a lot on head area with exertion
    • Young child “mood swings” - always ON or OFF, no middle ground
    • Great student, intelligent, but poor concentration...overwhelmed easily
    • 2013/2014: anxiety/panic attacks – chronic coughs in the fall (doc said environmental induced asthma), severe allergies and sensitive to perfume smells, smoke, etc., chronic yeast infections, tachycardia episodes like I had, stomach swelling like me with any food...it goes on and on
    • SUMMER 2015 – I tested her for Hashimoto's and she was the EXACT SAME as me (very high TPO antibodies over 1000, TSH of 6 and low normal Free T3 and T4.
    • She has not done parasitic cleansing – but was just diagnosed with HERPES SIMPLEX 1 (HSV-1) completely out of the blue and has never seen/had cold sores, ulcerations...she was tired a lot and got a complete workup (thought it was mono) and all that came back was yet another odd diagnosis that was unexpected.

      So can you see why I feel like all of my work has led me to a dead end? My daughter and I are the sickliest “healthy” people we know. All of these weird illnesses for the past 20 years, getting weirder and worse throughout time. We both have Hashimoto's with the same test results. She has celiac and I likely do because I get ill with gluten, but it is at the bottom of my list right now – I don't eat gluten, haven't in years, and I don't get better.

      The reason I am thinking Lyme is because of the growing research and chatter of Lyme being a cause of Hashimoto's PLUS it can pass from mother to infant (how can it be coincidence we are suffering a lot of the same illness) PLUS she has more evidence of co-infections PLUS the erythema marginatum (not to be confused with the bulls eye rash, not the same) PLUS my decades of GI symptoms resolved a great deal after just a few days of parasite cleansing (it continues and I am at 30 days)...so MY ROOT CAUSE apparently has to lie with a pathogen....and I am becoming more true hypothyroid after taking parasitic cleanse (seems autoimmune swings have stopped).

      But now what? Finding LLMDs and Igenex testing in the HOPE of getting verification on paper...multiplied by TWO people....seems impossible. I guess my real hope is some validation that you think we could be Lyme based on what I am telling you here – or perhaps the co-infection, which you are much more informed about. All of my work got me to Lyme and then I saw how complex Lyme is and my heart just sank.

      My plan is to take Biotics Research ADP protocol which gets amazing support from naturopaths and a lot of good feedback from patients. I don't know what else to try at this point...or if Lyme is even in the right direction. Attacking parasites did SOMETHING to me...something major....I have to be on the right track?

      I promise to never write so long again...........I had to put it all out there, I hope you understand.
Posted 1/20/2016 2:20 AM (GMT 0)
I am a new member...and very moved by your story. (I read all of it!) I appreciate you taking the time to write it. I agree about the complexity of Lyme which is why I bought a diagnosis of adrenal fatigue 2 years ago...I couldn't face the possibility then so I didn't push too hard for further testing even though I knew in my gut it was Lyme.
After 2 years of worsening symptoms...cardiac, autoimmune, dental, arthritic and gallbladder problems, etc, I was ready to face it. After 2 previously negative ELISA's, I just got a positive ELISA and Western Blot. )The Igenex test I ordered is on the way...looks like I don't need it now. Yay!
I'm in the hospital now...I had a knee replacement today...my second knee. ! had the first done 10 years ago. I'm beginning to think that I may have had Lyme For many years. I, too lost my uterus and gallbladder. I lived a conventional lifestyle and used conventional medicine most of my life...but trying to avoid it now. I hope to do one of the herbal protocols. I swore after the first knee that I'd never have surgery again. I changed my diet and lifestyle...paleo-vegan-mito-ish. I was in great shape for a few years before starting my downward slide about 3 years ago.Finances are an issue for me as well...I have a small business and business has dropped off lately. It's bad enough to deal with this disease myself...I can't imagine having a sick child! So sad for you! It must be horrible. I don't have much to offer you accept concern, interest and validation. It sure sounds like Lyme/coinfection to me. I'm interested in hearing what experienced members have to offer.
Posted 1/20/2016 2:57 AM (GMT 0)
Hello again ursamajor - Thank you for posting your 'story'. we 'met' on another thread you had posted on yesterday.

Yes, indeed, it could be lyme and co-infections causing all these medical problems for you and your daughter. And, add the fact that you had a tick bite...you may have found the cause of your symptoms. It can be passed from mother to fetus...which could also explain your daughter's symptoms.

I looked up erythema marginatum (googled it) and read that one of the causes is Lyme Disease.

You don't need a LLMD to do the Igenex testing. You can order the test kit yourself from Igenex (x2) and get any Dr. to sign the lab requisition.
Because funds are often an issue for us dealing with lyme, many of us just get the Western Blot IgM and IgG test done (no co-infections)
It will cost $210 for each of you.

You do not have to do a Pharmaceutical treatment, there are herbal treatments available.

If you can't afford any testing...then there is the option of trialling an herbal treatment and see if you and your daughter get a response.

I'm so sorry you have been dealing with all this....but I am glad you found us here. It's a great group of people...lots of support and knowledge.

I am not familiar with the Biotics Research ADP protocol...is it specifically to treat lyme?


Don't worry about the long post....you needed to tell your story...that's okay...
:-)

I kept this brief...so not to overwhelm you...please ask any questions...
Posted 1/20/2016 3:02 AM (GMT 0)
My first symptoms were racing heart and anxiety. I was a "healthy" 29 year old. Your and your daughters symptoms sound like Lyme. I did the IGenex testing and I was PCR positive. I also have babesia bartonella and mycoplasma. Lyme can affect every part of your body. I'm sure you know as you have been researching. If you and your daughter can get the book Lyme Diet by Nicola...that might help as a starting point. Her website is restormedicine.com. I never ever remember being bitten by a tick but doctor thinks I had it for 2 to 10 years. I had a baby and 2 deaths in my family so it brought it out. Once it's out it seems to snow ball and once you beat lyme back it seems bartonella or babesia will take over. In my case that's what happened. Now I'm working on building my immune system and still have set backs. Been treating for a year almost. All I can say is you and your daughter know your bodies. You know when something is wrong. I would try to get with a good LLMD to even touch base with over the phone as a consultation so they can try to point you in the right direction. This is a very complex disease in finding. I definitely think eating correctly is a big part of it. Not sure if you suffer from candida but a lot of lyme people do. So the diet will help with that too. I will pray for you and your daughter. Hang in there and I think you are going in the right direction. Let me know if you have questions :).

Leah
Posted 1/20/2016 3:45 AM (GMT 0)
To all of you - I am going to get some rest tonight, but couldn't bypass a brief thank you to each and every one of you for your stories and support tonight. Will reply in a more detailed manner tomorrow. Just thanks for allowing me to hit the hay tonight without feeling so lost and alone (with exception of a wonderful, supportive husband at my side...I am very lucky in that regard).

Sweet dreams to all and again, thank you.........
Posted 1/20/2016 6:12 PM (GMT 0)
KATHIE

Thanks so much for sharing your personal story – we have a lot of “loss” in common (those “disposable organs” doctors seem to think aren't needed for health – which, in their absence, truly ruin your physical and mental health afterward). I am quite a peaceful person but I get very upset when I hear people talk about “just take your gallbladder out” as if it were put there by mistake. You know how your digestion and absorption get destroyed in the absence of that organ. If I could turn back time I would have done anything to keep all of my body parts before saying ok to surgery.

I am so sorry you are in the hospital, having yet another surgery. Though I do avoid conventional medicine, I recognize there are times there just aren't choices. I'm sure I haven't seen the last time at a conventional med facility in my lifetime, too...we do what we have to do. I hope you have a speedy recovery.

Your post struck me in another way – you mentioned going paleo, vegan and yet still your health slid. That is such an important point. I felt the same – here I was watching the grocery carts go by full of donuts and boxed mac n' cheese and soda pop and hot dogs – long car lines outside of fast food restaurants....while I was eliminating everything and eating organic when possible and not going out to eat. Yet I was sick and, at this point in time, the “rest of the world” ate whatever they wanted and looked more energetic than me! THAT is the clue, I think. When you are doing the right things and nothing makes a difference that lasts.....that is when it is time to think that maybe something else is steering our bodies – that we aren't in control. Enter pathogens. It is now what makes sense to me (and I responded well to intervention, of course).

Again, thanks for responding to my post yesterday........Robin
Posted 1/20/2016 6:14 PM (GMT 0)
GIRLIE

You brought up a lot of great information (thank you...and I do recognize you from that other thread!) so, if you don't mind, I have questions/comments from your post:

1. You mentioned I can order a kit from Igenex (that is good) and that “any doctor” to sign the lab requisition. But will “any doctor” truly do this? I don't have a doctor at all. Wouldn't I (and my daughter) need to establish with a conventional med doctor and wouldn't they require actually “seeing me before signing anything” or am I missing something?

2. I know Igenex is the best and that they test the right bands, etc....so I want to do this, I really do. But I have been doing parasitic treatment for 30 days AND this would definitely be a long, chronic illness for me AND I have autoimmune disease in full blown status (I read something where my toasted system might not even make antibodies right now)...couple that with how often people have to test over and over before “positive” for Lyme – is this the best time for me to test? I want my daughter to start parasite treatment but will hold her off if that may interfere with Igenex. Maybe I should just test her (if her cheap clinic she goes to will agree to sign the Igenex requisition).?

3. Maybe I should have her do the test and I should try the herbal regimen, if agreed my current status would make a positive test unlikely anyway? I am very in tune to my body (annoyingly so) so I would likely notice the difference. Of course, I fantasize about having that “root cause” on paper and would love to test myself, too. But being conservative financially, perhaps I should let go of that fantasy for now?

And to answer your question about Biotics Research ADP – I can't say “here is the simple cure for Lyme!” haha – but if you google “Biotics Research ADP Lyme” you will see that it is highly regarded and patented for pathogens (and some swear by it for Lyme...I don't know about the co-infections yet though...still learning). Given I wasn't sure what I was dealing with, but knew it was some type of pathogen, I thought this would be an excellent product to use given its testimonials and the professionals who “prescribe” it to their patients. So that is the only reason I chose it. However, I am seeing so many different protocols and it seems there are different ones for different parasites, etc? No idea where to start in that regard, given I don't know what I have.

Thanks again for your help! So appreciated.........Robin
Posted 1/20/2016 6:16 PM (GMT 0)
LEAH

Your post struck a chord with me, because you mentioned death in the family. I am an only child and suddenly/unexpectedly lost my mom (we talked one day on the phone, the next day she passed away type of shock to my unexpecting system) who had just turned 66 (will be 4 years ago this week). We were so close – she was my friend and mother...and I miss her every day still.

Though I have had physical issues a long time, I can say with certainty that my health started to go downhill rapidly after that. To add further adrenal exhaustion to all of this, I was left with the difficulty (still am) of seeing my stepfather of 33 years through a Lewy Body Dementia diagnosis and moving him into assisted living (truth be told, my mom could never have handled this pain of watching him slip away). So to say that life events trigger further decline is an understatement, isn't it?

Thank you for your recommendation of the book and website – I am an information junky and appreciate the new information to explore.

Also, you mentioned candida. I don't recall having a lot of issues with it, but my daughter certainly does....it drives her mad. I appreciate the Lyme reference with this issue.

A follow up question(s), if you don't mind:

There are LLMD's who would actually consult by phone? Do you feel this would be worth the cost (or do they tend to just tell you to do the impossible, like order thousands in testing, etc?...things I already sort of know)? If you think it is a good idea, maybe I should start a new thread and get recommendations in the forum?

Thanks again for sharing information and your willingness to help! Robin
Posted 1/20/2016 6:28 PM (GMT 0)
Hi Robin!
Welcome to our community! I'm so glad you found us! I've had many, many years with sordid symptoms due to these infections as well - and I wanted to stop by and welcome you and reinforce what Girlie has already said, that it's possible to heal with natural means only if that's your choice. I did. I was first infected at the age of 7 and didn't get effective treatment (all herbal even though I tried the pharma route first) until I was 47 yrs old.

I too have had a variety of organs removed as if they were excess things! And I have vowed that no one will be taking any more out of me unless I deem it necessary. While I know I needed the hysterectomy (prolapsing), and the appendix (leaking and ready to burst) removed, I'm not so sure my gall bladder really needed to be removed. I began to feel like the guy on the board of the game "Operation". LOL!

Anyway, I just wanted to welcome you and say that it's very possible that both you and your daughter have Lyme and possibly other tick-borne infections as well. And - you should know - there are many more insects that pass these infections besides ticks - mosquitoes is another one!
Posted 1/20/2016 6:32 PM (GMT 0)
Wow, thanks for sharing your story, you guys have been through a lot!

I first joined this board about a year ago after I tested positive for lyme (had a tick bite 18 mos prior to diagnosis but also had other tick bites several years ago). I had a gradual decline in health ever since the birth of my second child in 2009.

I found an LLMD in Feb 2015 and treated the lyme and co for about 10 months with antibiotics. I felt worse on antibiotics and only noticed an improvement once I stopped the antibiotics and found the right thyroid medication at the right dose (Armour and Levo did not work for me, I use Synthroid and genetic Cytomel (T3)). Just for the record, I am NOT suggesting to anyone they need to stop treatment for lyme, it is just what worked for me. On paper, the thyroid lab results never indicated I was hypo-as I was always in the "normal" range-albeit always at the bottom end of "normal". I had depression, mood swings, weight gain, chronic hive outbreaks, food sensitivities, loss of appetite, hair loss, low energy, no motivation, overwhelmed by the slightest task, memory and cognition issues and lots of anxiety. It took several months of looking for thyroid antibodies before they finally appeared in my bloodwork. So I believe I began experiencing the very beginnings of Hashi's long before lab work could even detect it.

Both of my children also have endocrine issues. My daughter was born in 2005 without the majority of her pituitary gland. This means we have to supplement all of the hormones her body needs with medication (growth hormone, thyroid, adrenal and eventually sex hormones). Doctors have never been able to give us a reason for her diagnosis. Then, my son was born in 2009 seemingly healthy until he began to slip down the growth chart. He has failed 2 growth hormone stimulation tests. His Endo says this qualifies him for growth hormone but insurance will not cover unless he slips to the 5th percentile for height and weight. It is a $900 a month medication without insurance.

I mention this because I have often wondered if my lyme affected either one of them in utero and caused this -directly or indirectly by triggering the autoimmunity in my body and then affecting the fetuses. It is likely we will never know. I have asked both our pediatric Endo and my new Endo, and they both said nothing like that has ever been documented (daughter's panhypopit is very rare and it is even more rare to have 2 children with growth issues and a mother with autoimmune) but they both acknowledged that it doesn't mean it can't happen, it's just that no doctor or researcher has ever discovered it. Somehow this all seems more that coincidental.

So that's my situation... and here are some of my thoughts about what you have shared:

1> I think it is amazing and wonderful that you were able to get off thyroid meds and do well. However, I think you may have felt better off the meds when you were swinging HYPER based on the attack on your thyroid. If your thyroid is being attacked and releasing extra thyroid hormone in addition to what you are supplying with medication, it's no wonder it brought on so many hyper symptoms! You say you are now feeling hypo, yep -that's Hashi's! Swinging back and forth is one of the tell tale signs of the disease. From what I have read, a strict diet, adequate adrenal support, parasitic cleanses, etc can help with all of this but the majority of folks with Hashi's will need meds to live a normal life. Some fortunate folks are able to bypass meds and I am very envious of them, but I tried weaning off and felt like death was at my door. I would suggest working with a good endo to manage your symptoms and doses.

2> It is my personal opinion that lyme and EBV (mono) are catalysts to autoimmune diseases and leaky gut (I also had a nasty case of mono when I was 15 which had me out of school for almost 6 weeks). In addition, it has been found that the susceptibility to autoimmune diseases runs in families. So you and your daughter may have the genetic make-up for autoimmunity and may or may not have had it triggered by lyme or mono (they say upwards of 80% of people contract some form of mono in their lives whether they realize it or not). You can find a lot on the internet if you search for "lyme and Hashis" or "EBV and Hashi's". It is very eye opening.

3> Those with one autoimmune disease are much more likely to eventually be affected by others. For example, it is not uncommon to have Hashi's and celiac or at the very least, be gluten sensitive. I am gluten sensitive , but have never run tests for celiac disease. I don't get vomiting or diarrhea, but I get stomach pain, racing heart, and feel like I am burning up from the inside out if I am "glutened". Also, because of the endocrine issues that my children have, my endo just recently ran a bunch of blood work to test my pituitary as well. I am still waiting on the results, but I have been researching and discovered it is not uncommon for those with Hashi's to also have autoimmunity to their pituitary. Maybe the pieces of the puzzle are all finally coming together for these crazy health issues in my family??

4> If you strongly suspect lyme is the root cause of your daughter's issues, I would test her. It you get a positive result, get her to an LLMD and begin treatment. Doing the parasitic cleanse before lyme treatment is actually a good thing. It will free up her immune system to help fight the lyme. I don't think I would try to do the same at once, it may be too much for her body to handle, especially if she has detoxing issues. Testing for MTHFR genes is another great step to take which will give you insight as to how well she detoxes plus which supplements can help her body become well again and fight any infection. If you don't get a positive result, it doesn't necessarily mean she doesn't have it, it just means she may not have had a strong enough immune system reaction to the lyme to be measured by the lab. You can look into herbal protocol treatments that many others have used so see if there are any improvements.

5> One more word on autoimmunity... LDN. Low-dose naltrexone. This can be a hit or miss for some. Some claim it has helped greatly in reducing the attacks on their bodies and others don't notice much of anything. It has been shown to help re-direct the immune system away from attacking our own bodies. The biggest difference I notice is that I sleep really well when I take it. I have had noticeable improvement with my overall health in the last few months, but I don't know that I can attribute it solely to the LDN. Finding the right thyroid meds has been an enormous help.

Glad you found this board! It has helped me a lot on my journey to good health over the last year. Please keep us updated on your next steps!
Posted 1/20/2016 7:44 PM (GMT 0)
I'm so sorry for your loss! The doctors and I both know that is what brought it out of me. My body was already worn out and tired from having a new born and nursing her at all hours of the night. Both my relatives were on hospice and we flew to NY to take care of them. about a month into it one died and the other 3 weeks later so watching that and experiencing that definitely took its toll. I'm thinking that might be your case too. And my heart goes out to you at this tough time as well. I bought so many self help anxiety books thinking it was because of grief and anxiety. My heart was racing all the time(still does sometimes when I am just a little nervous). I couldn't take my daughter for walks around the block without being winded. I used to go to the gym every single day and when I went one night I put my hands on the heart monitor on the treadmill and it was 140. I knew it wasn't anxiety. I ordered the igenex test myself and a family doctor in NY signed off on it and it was positive.

I then got treatment in June 2015. most llmds can diagnose on symptoms alone, bur for my peace of mind I was glad I had the blood work done for peace of mind. Side note when I was in Florida in April two months before getting diagnosed.... thinking I might have Lyme the ENT I was seeing laughed at me and did the ELISA and called me and said I told you you don't have lyme you just have allergies and migraines and tachycardia and anxiety.

I like my doctor now because he doesn't just assume everything is lyme he tested for everything even though he's an LLMD. He is an internest as well.

Your question about consulting over the phone...yes some doctors do and no she didn't make me get tons of tests at all. I did already have the Igenex done though. I can give you her information in email of you want. She is super knowledgable and will do Skype appointments or just over the phone. I still see my one LLMD but then consult with her. She always answers my emails and questions. She is wonderful just too far away for me to get to. Let me know if you would like that information:)

Leah
Posted 1/20/2016 11:23 PM (GMT 0)
Robin,

Regarding testing: You mentioned a holistic MD - you were seeing at one time...would he/she be someone you could ask to sign the lab req for Igenex? Or...any Dr.'s you've seen in the last couple years...even a chiropractor can sign it. Tell them you had a tick bite..and your health has been declining since...and you want get tested. Or if the Dr. that your daughter is seeing is willing to sign off for her, maybe he'll sign the lab req for you, too.

Some people take OLE (Olive Leaf extract) before testing - to provoke a response. Here's a thread on it:

www.healingwell.com/community/default.aspx?f=30&m=3456121
Posted 1/21/2016 1:27 AM (GMT 0)
TRAVELER

Thanks for the much needed laugh regarding feeling like the "operation game guy" - how amazingly true! I think you are on to something. Maybe we can patent and create a device for doctors to get that awful beep and red light when they are going the wrong direction regarding our healing and care. So very tired of doctors finding ways to suppress symptoms (i.e. just take it out) vs. finding the root causes of our illness.

And thank you for the support by telling me healing naturally is possible.....of course I believe that, but sometimes you just need that virtual hug reminding you to stay on your path.

Robin
Posted 1/21/2016 1:33 AM (GMT 0)
I'm in!! I'm in!!! I want one of those red lights and that awful "Beeeeep" when a doc heads in the wrong way with my health! Where do I sign up??? turn

Any time I can be a goof, let me know! wink Honestly, there are a LOT of really good people in this community, which is why I call it a community. We actually care about each other here and want to help all those that come through here. That's why I'm still here. :-)

And if you need some help in remembering that it's possible to heal naturally - read my story!! All you have to do is find one of my posts (there's lots! LOL!) and follow that link on the bottom. Infected for at least 40 years, healed using herbs only - not once, but twice!
Posted 1/21/2016 1:45 AM (GMT 0)
LYMIE MOM X 2

Thank you so much for the loads of information you shared........I got my notebook out and started jotting down all of the gems in your post.

I want to first say, given that you are dealing with the pain of having two children with health issues in addition to your own, that my daughter would tell you I have always stated "there is no such thing as coincidence." My holistic doc used to always tell me that "everything happens for a reason...every single thing...." - I owe it to him for the initial motivation to begin finding my own truth behind illness, etc.

I hope you don't mind, but the points you brought up come with questions/comments once I took time to digest them.......

1. As for Hashi's - you know the disease all too well. But I am torn between "I should take thyroid med" and "I will go crazy if I take it." I am hoping that treating my root cause will calm my system down so I CAN take it.......but what about in the meantime, in your opinion? Believe me, even in this new for me feeling of hypo, just a crumb still throws me hyper. I think I have to just hold on and wait until I see a lot more evidence of healing. My body just will NOT take it...not at all. It isn't something I can ride out - it is an unhealthy response...it happened with levothroid, it happens with a very low dose cut in quarters of natural dessicated thyroid.....you get the idea. Chomping teeth, tachycardia, racing thoughts....I can't go through that while I am trying to heal.

2. I completely agree with you that lyme, ebv and other unwelcome guests in our body are the triggers for many instances of autoimmune disease. I still am caught up in the various triggers for autoimmune disease, be it food or invader...all I know in all of the learning to date is that we are growing very ill, young and old.

3. Thank you for the information on pituitary autoimmune. Will look into that, for sure. It is something when puzzle pieces start coming together and you start to actually see something tangible.

4. Thanks for sharing that a parasite cleanse is a good idea before Lyme treatment. A question I asked earlier was if a parasite cleanse interferes with Igenex testing in any way? Meaning, should I keep her from all treatments until testing is done?

5. MTHFR is something that has certainly popped up in my research, but I never looked into it further. Appreciate the tip that it is a path worth researching. If you have the time and energy, could you please elaborate a bit more on this (or email me)? I realize time is limited and none of us feel that great....just if you have any cut/paste info, would love to hear more instead of entering the energy vampire world of Google searches.

6. LDN - thank you for the tip - will add it to my "look into this" pile!

You took so much time to share info - cannot thank you enough...

Robin
Posted 1/21/2016 2:03 AM (GMT 0)
LEAH

I am so sorry for your losses as well...we are all so much stronger than we give ourselves credit for. While feeling ill, we still search for answers to our health while dealing with losses/challenges, caring for children, walking the path of grief. Whenever I feel low, I always try to remind myself that I am a "warrior" of sorts, even if I don't really feel like it.

I felt that lump in my throat when you mentioned the doc who laughed at you and said "you just have allergies, migraines, tachycardia and anxiety." So I will briefly tell you my story. Years ago, after much research, I KNEW I had contracted Ramsay Hunt Syndrome. I wasn't severe, but the symptoms were there. My primary doc looked at me as if he'd never heard of the illness. I went to an ENT, armed with my symptoms and data......he was actually aggressively offended and I sat on the table in tears (I've never cried in front of a doctor ever) as he nearly shamed me for suggesting Ramsay Hunt and then told me "it is probably a tumor in your face!" Finally, like Goldilocks, the third doc was "just right." An internist who listened and did the right tests and celebrated with me that I was right all along. This is my PTSD and why I don't go to doctors anymore. Again, I respect everyone's choices....I truly do (if you knew me, you would know I am speaking the truth on this). But I would have to be dragged kicking and screaming into a conventional med office anymore....I just can't do it.

Back to your doc's quote "you just have allergies, migraines, tachycardia and anxiety" - today my reply would be to look him/her in the eyes and say......"ok........now tell me WHY for each of these." Sad thing is I don't think they can.........

Finally, a huge YES - Please share/email your information on the medical professional you have had positive experiences with, who will allow consultations by phone. I would love to do this. I think (like you) I won't make contact until AFTER Igenex results are in....but can't thank you enough for offering to share this resource.

Take care, Robin
Posted 1/21/2016 2:22 AM (GMT 0)
GIRLIE

First and foremost, thank you for the olive leaf tip! Very good to know when testing time comes....

Along those lines, do you have any suggestions (if only initially testing ONE of us, my daughter or me) who would be the best candidate? She has many of the "odd" Lyme symptoms and is still untreated 100%. I have been on parasitic cleanse for 30 days. Want the "best odds" for this expensive testing, recognizing we could both still be negative. But who would be the best one to start with, in your experience?

By the way, I am currently 600 miles away from my holistic MD, who I haven't seen in years. He was a great teacher in the beginning, but he sort of stopped at food allergies. I think he was the right person at that point in my life and now I need to keep walking down my path and meeting other "experts." So he isn't a likely candidate for signing the lab requisition.

So if you don't mind, I have Igenex questions after digging a little deeper:

I understand that I can order the "kit" for free...so at least my daughter and I have it in hand. But I get lost after that part.

I thought, like ZRT does, that maybe this is a blood spot at home but needs a doc's signature. From what I am reading it appears I not only need a doctor to sign but his doc also needs to send me to a lab with his/her blessing?

Not to sound naive, but who pays this lab for the draw?

You mentioned using a chiropractor to sign, but do they send you to labs?

I guess, in sum, I am thinking this is going to be trickier than I thought. Take my daughter, for instance. She uses an affordable clinic for the "basics" when needed. So if she makes an appointment with them (no familiar doctor, this would be her getting whatever doc is available that day)....she would walk in with this kit, ask for a signature and a "blessing" to send her to their lab? I think where I am stuck is that this lab will get paid somehow and, without a doctor's blessing, how will that blood get drawn? With a doctor's blessing, won't we have to pay the lab in addition to the doctor's visit AND the Igenex costs?

Again, the lab part is where I am getting confused. A doc or chiro signature I could probably get creative and pull off.........but I need a lab, too. Am I overthinking?

I would really like my daughter tested first. Especially if she needs to stay away from parasite cleansing until the Lyme testing is done for a higher likelihood of accuracy (a mother anxious to help her daughter). In your experience, will this type of clinic help from start to finish with signatures and lab work? I am so skeptical it is hard to imagine. If a chiro or other alternative health doc is more likely, I would go that route with her...if they have lab connections and they don't cost a fortune for the blood draw.

I hope I am overthinking!

Thanks Girlie.............Robin
Posted 1/21/2016 3:21 AM (GMT 0)
Maybe start with getting your daughter tested first...and then you can wait for yours - until you can afford it.

So, yes you need a Dr. to sign the lab req...and then go to a lab for the blood draw. I don't know how it is done in the U.S. (I live in Canada), but after the DR signs the form, then we go to the lab and pay for the blood draw. The lab took care of sending it off via Fedex. The lab fee wasn't much - I think it was less than $50.

If a chiropractor signs it, then you just take it to a lab. His signature is all the lab needs.(no blessing required and they don't need lab 'connections')' The lab requisition is all the lab needs with a signature to do the blood draw.

I hope someone from the U.S. will chime in and give you better information...sorry!
Posted 1/21/2016 3:56 AM (GMT 0)
Thanks Girlie!

I think I am going to start a new post with just this question, to grab anyone I can who might have creative ideas on getting this Igenex testing done. Hopefully you agree with my thoughts!

And again........my daughter having no parasitic treatment nor antibiotics to date shouldn't hurt Igenex testing in your opinion, correct? Will try the olive leaf prior to her testing.

Thanks again!
Robin
Posted 1/21/2016 6:40 AM (GMT 0)
By all means - ask about the Igenex testing - the procedure may be a little bit different in the U.S. - maybe there isn't a lab fee....

Re: testing. Some people do take antibiotics for a few weeks before testing...for the same reason that the OLE is used.
It's not necessary, but it can provoke a better response.
Posted 1/21/2016 1:34 PM (GMT 0)
Hi there :)

I can email you if you make your email available in your settings :). Let me know what you would like to do :)

Leah
Posted 1/21/2016 3:53 PM (GMT 0)
Gosh I am such a newbie.........will work on that right now, Leah! Didn't know it wasn't accessible! Thanks so much....
Posted 1/22/2016 10:33 PM (GMT 0)
Hi Robin-

I am sorry it has taken me a couple of days to get back to you! I will try to answer your questions as best I can!

1> Re: Hashi's - Wow, sorry you are dealing with the hypo symptoms and not able to get relief with medication. I could not handle Armour. I felt extremely hypo, almost drunk, weak, somewhat disoriented and felt like the left side of my face was sagging and I could hold my left eyelid open- so bizzare! Levo worked similar to Synthroid but caused me to lose even more hair than no medication at all. Synthroid plus generic T3 combo seems to be the right choice for me for now. I would have suggested starting with a fraction of a dose but since you have already done that without success, it seems you are on the right path in listening to your body. Sometimes adrenal fatigue can mimic low thyroid symptoms. Have you had your adrenals tested?

2> A parasite cleanse should not interfere with Ingenex testing. When we are tested for lyme, regardless of the lab used, the test is not looking for bacteria, parasites, etc. It is actually looking at our own bodies' immune response to the foreign pathogen. When there is an immune response, we develop antibodies to a pathogen. The test is looking for evidence of antibodies specific to lyme in the blood. To my knowledge, parasites in the GI tract should not interfere with lyme antibodies even if the parasites are cleared before testing.

3> MTHFR....The two main MTHFR genetic mutations linked to detox and methylation disturbances are C677T and A1298C. You can get up to 2 copies of each from each parent (worse case scenario) or one copy of one mutation from one parent (least-worst case, obviously best case would be to have none at all!) I am compound heterozygous which means I have one copy of each mutation from each parent. There are many other gene mutations that can be present to complicate things, and if you want a full spectrum analysis done, you can go through 23andme.com and have the test done for $99. I actually had Quest labs run mine to look for just A1298C and C677T since I had a reaction to a synthetic B12 shot. But unfortunately insurance didn't want to cover, and I ended up paying $300 out of pocket. I wish I would have just gone through the website and had the full panel done, I would have actually come out on top with more genetic info. Knowing what I have, one of these days I am going to test both kids. Dr. Amy Yasko is the physician who has brought these mutations to light and she believes they are associated to autism. Dr. Ben Lynch has also done a lot of research, you can find his info at: http://mthfr.net/

Hope this helps! Let me know if you have any questions!
Posted 1/22/2016 11:34 PM (GMT 0)
Thank you lymie mom......great information, much appreciated!
Posted 1/23/2016 3:12 AM (GMT 0)
Lymie mom- what kind of reaction did you have to b12 shot if you don't mind me asking? I had a reaction with the injection and then they did a nutritional IV with the B12 and I literally was a swollen tomato all over my body for 9 days. I never tested for the mutation....would be interested to know more :)

Thanks!

Leah
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