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Curiosity about why 2 yrs is considered "long term"

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Posted 10/17/2015 12:22 AM (GMT 0)
This post is just to start a conversation about why it is that so many people feel that they have been sick a very long time and the numbers thrown around are two to four years.

I'm not trying to down play anyone else's illness. It's just that even when you read articles from the medical journals they talk about long terms illness being two to four years.

I can pinpoint my symptoms back to the age of 16, although it is possible they go back further. I'm 52 so that is 36 years. I know that Traveler goes back even longer. I know there are others who go back quite a ways.

I wonder because we can't be the only ones. So why is there so much smaller of a population with extremely long term Lyme symptoms? Is it just that a lot of our symptoms have become "normal" and so we don't pickup on it.

Personally, I only got diagnosed because of a series of odd coincidences, a lot of stubbornness, a lot of research and a lot of luck.

So any ideas how we can increase the population of extremely long term patients? I hate to think there are other people out there sick this long without any idea there IS an answer.

Kim
Posted 10/17/2015 12:45 AM (GMT 0)
I don't know. I have talked to/emailed, etc. a lot of people who have had it more than 5 years...there are a lot on this forum.

I was just over a year when I was diagnosed. But, I could have been one of those who went on for many years.
I was talking to my hair dresser and I told her my symptoms, and she said I sounded like a client she had who was misdiagnosed with MS and really had LD. She is in a wheelchair.
For me, when I googled it....so many sites said bulls eye rash (nope), flu-like symptoms (nope), fatigue (nope).
If I had read on the first page of a lot of these sites - some of my symptoms...maybe I would have looked into it deeper.
My Dr. agreed to do the Canadian two-tiered test...came back negative.

I came across this site when I was googling some symptoms...and thought, what the heck, I'll post and see what everyone says. I wish I could find my post now. But, after posting on here, I did the Igenex test..and was Igenex Positive. The rest is history.
Posted 10/17/2015 3:04 AM (GMT 0)
I am the generation of kids that got infected in CT before Lyme disease had a name. I was in high school and then went out of state for college. It was during those years that it was named and started to get attention.

I then moved to MA after college, but even though it had a name and ticks had identified as the carrier no on really knew anything about it. The bulls-eye rash got the most attention.

In my 20s, I had pain in the area where the ribs join the sternum. I went to the doctor and they said "we find this in young people your age. we don't know what causes it but cortisone shots usually clear it up." Yeah, "young people" my age was really the lost generation who were infected but didn't stay around long enough to be diagnosed. We all grew up and moved away taking it with us.

I only got diagnosed by a lucky set of events.

First, I started having pain in my joints that I never had before. My Rh gave me Plaquenil but warned me it would take 3 months to get any relief. I noticed immediately that my drenching sweats and the pain on the bottoms of my feet (yep, babesia) went away completely. i went to see my eye doctor for some of the tests to baseline my vision. She had just been to a professional lecture with a dr that talked about a patient he had who went to dr after dr until finally someone said "have you been tested for Lyme" (the patient was his wife).

She knew my medical history and knew I came from CT. She asked me about Lyme and then found the info she had been given. I then spent 3 months arguing with my RH until he finally got annoyed enough to say "fine, I'll sign the paperwork". He fully expected a negative result and was shocked when it came back positive. He's a great doc so instead of spending the time making excuses he listened to what I had to teach him and he took a copy of Burrascano's Advances in Lyme. That's high praise because he always tells me that there isn't enough time to read the lit in his area never mind anyone else's. But now this is in his area. I'm sure next time I see him he'll have a list of questions because I've been a guinea pig before when he sent me to other doctors.

In the three months I was arguing with him, I researched. I happened to stumble across Pirouette on another online social media site and she directed me here. I have learned a lot.

I'm in the process of getting my son tested but my daughter doesn't have a doctor to sign the form. She's not symptomatic, but eventually when her body is under stress she could start having symptoms.

Personally, I have always talked about my symptoms, diagnosis and my kids (both ADHD and my son PDD) to everyone i meet. It's no different now. If anything I talk more now, given I have a test that is positive and there is something I can do about it.

But I am an engineer by trade and my job was breaking software/hardware systems, so I am always asking questions and research is something I'm good at. I'm really an introvert. Funny, I know if you have read anything I've written here, but this is relatively anonymous.

Thanks, for responding. Have a good day, Kim
Posted 10/17/2015 3:22 AM (GMT 0)
I know what you mean I was in early grade school when I got really sick. I was 39 in August, I was diagnosed in early march 2013. I wasn't even seeking an answer anymore, I always just said I has crappy genetics and it was a joke with my friends and family that I was always sick. When I was a teen I would take a shower and want to get dressed to go hang out with my friends on a Friday night and I'd be so tired after a shower if have to lay down and couldn't even blow dry my hair. I had so many bizzare symptoms.... Panic attacks and feeling like I was in the twilight zone. Lots of health issues, respiratory, Gi, migraines, strange vomiting episodes, pain you name it! It has been most of my life. Then without knowing I had lyme I have had six children and some if not all of them have it either from me and my three year old was bitten in August. He had an EM rash, text book so at least we were able to get him amox...... It's so upsetting and it's really something that forces you to find it within yourself to be positive because there just isn't much support or understanding out there for this. I worry about my children.
I had an IgM CDC positive western blot which I know is odd to drs because it would in their minds mean early infection.... I guess they don't know what epitope switching is...😫
Posted 10/17/2015 4:57 PM (GMT 0)
Yep. I have two kids and my son is (and has been) symptomatic. My daughter doesn't have any symptoms.

My daughter had chronic ear infections and ended up on abx for two years everyday. After that, she had chronic strep and was put on rifampin for an extended period of time. So I think she escaped it.

My son also had chronic ear infections but they did tubes instead of abx. He also had chronic strep but only abx.

We are going to do the Western Blot for my son, but are still in the process of taking OLE to provoke a response. His pediatrician is on board and acknowledges that she can't treat him if he tests positive. After 20 years and 2 kids, we trust each others judgement. I used to say that they need to give me my own room because we were there so often.

So not much I can do other than get my son tested and find the right dr if he tests positive. My daughter will have to wait until she is seeing a dr regularly. She's too old for the pediatrician and no doc is going to sign the order without having had her as a patient for a while. So we wait and watch.
Posted 10/17/2015 5:30 PM (GMT 0)
So if a child is not symptomatic you would just wait and watch? Going through this right now with my 3 children. My ped has agreed to test my two girls with labcorp western blot (ages 10 & 7). My son (age 12) has had some recent stuff where the ped did do western blot and he was positive for 41 & 66 IGG only. He is on amoxy for 5 weeks which was the most she would offer. I am not sure if I should find him a pediatric lyme doc or also just wait and watch.
Posted 10/17/2015 5:40 PM (GMT 0)
I think they need another term for illnesses that last longer than 2-4 years because 2-4 years is still a long time for anyone to suffer IMHO. I'm so sorry for all those who do :(

And, kyo07

You just might want to start your own thread with this very important question.
Posted 10/17/2015 5:50 PM (GMT 0)
Kyo - No- don't wait and watch on a child. If they have symptoms, they need treatment. I know that many say that a child's immune system generally can overcome this, but what if it doesn't? Then that child is left with chronic Lyme. Believe me, I would have much rather had long term treatments - no matter what they involved- rather than to have grown up with these issues and finally being diagnosed 37 years after my first major illness (RMSF at the age of 7). I was tested in 2008 - after a year of abx treatment - and had a fully CDC positive Lyme and RMSF result.

The other thing you need to understand is that Labcorp doesn't use the right testing medium (the stuff in the petri dish) and they don't train their techs to do the testing correctly. Lyme doesn't replicate as fast as other bacteria, so they simply don't give it enough time to produce a positive result in most cases.



Gkamom, Lyme can go chronic in as little as 6 weeks for some people - for others it takes longer.

And yes, I too feel like there are thousands of people out there that are just living with these infections because they have been convinced that their symptoms are just from "old age", Fibro, or any other number of things that Lyme gets misdiagnosed as.

As to your original question about why people feel 2 years is a long time, I believe it's because generally speaking, Lyme is the worst thing that they have gone through, so even 2 months feels like forever.

Even me, who when I was pregnant, it was a horrible experience, and the delivery of my kids raised alarms with my doc's as well - my son got stuck (literally) inside and they couldn't get him out. We both almost died on the delivery table, but even though Lyme was the reason for that, it got a LOT worse for me. It took a long while, I think my immune system deserves a special sticker for it's valiant efforts, but eventually the infections won for a while and I was deathly ill - and alone. Abandoned by the entire medical community where I live. I went to each Dr's office and tried to get an appt, yet I was told that "the Doctor doesn't want to take on such a complicated case right now" - even though I begged, knowing that I was in a downhill race against time with my body shutting down. They still turned their backs on me.

I don't believe that I'm the only one they treated that way, so there are many in my own community that I'm sure are just trying to live with whatever it is that their doctor has misdiagnosed them with and not understanding why their meds aren't helping like they should. If only they understood that they are dealing with a set of infections and not some "condition". SMH.
Posted 10/17/2015 8:06 PM (GMT 0)
Kyo - I did not mean to say that you should watch and wait. My daughter is 23 and too old for the pediatrician to legally write the order for the Igenex test. She relocated to FL after graduating college and is healthy enough that she doesn't have a doctor.

There isn't a doctor in the world who will sign the order. Even if we were able to test, since she has no symptoms so there is nothing to treat and no way to tell if the Lyme is eradicated. It's possible that the two years of abx as a toddler followed by the Rifampin took care of everything for her.

By watch and wait, I meant if she starts having symptoms then we will need to find a doctor and get her tested. I'm concerned about when she gets pregnant the stress in her body might allow the Lyme to take over. If she had a doctor, we would pay to have the Igenex test done so we know if she was exposed.

My son is a different story. He does have a pediatrician who is proactive. We discussed it at his last well care visit. We agreed that if I come back positive, then she would sign the order. She is really good and we have been through lots of things with both kids (yes to me 16 and 23 are kids).

I came back positive and she signed the order. We discussed treatment and i told her that it would take years for me to eradicate it from my body. If he comes back positive then I'll have to find someone I can trust to treat him. She said that all she could do was the standard course of abx and that wouldn't be enough if I passed it to him during pregnancy.

My son has been symptomatic since he was a toddler. One of the symptoms was muscle pain and to have an 8 year crawl into bed and say his legs hurt more than "normal" was heartbreaking. She referred us to the head of Pediatric Rheumatology at UNC Children's Hospital who told me that his pain was all in my head. NOT.

So the next time we saw the pediatrician I told her that he sucked as a doctor no matter the training he had. I was going to treat my son as I thought it was appropriate. I was using the Guai Protocol at the time. It did help but don't know why. She warned me about the fact that large doses can cause too much thinning od the red blood cells. Guai is chemically similar to aspirin so large doses can be a problem. But I knew how much I would be using to treat him and it wasn't going to be anywhere near the max dose.

So that's the way we work together.

Traveler is one of the most experienced people on the forum and you should follow her advice. There are other veterans on the forum who have children that are being treated for Lyme. If you start another thread specifically about treating children they will chime in. They are great resources and happy to pass along info on their experiences.

Traveler - I find it interesting that you had problems in labor. I don't think this is something that I've read any discussions about. I had problems with both pregnancies. I was symptomatic up until I got pregnant then my symptoms all faded away. The only exception was allergic reactions. They never went away.

With my daughter, i was in labor for 21 hours. The first issue was my contractions. They were about one minute long, 45 seconds apart and in groups of 7 or 8. So essentially, I had 7 or 8 minute long contractions with only small blips. The first would start and go to max, then drop a tiny bit before going up a bit. After about 8 minutes, I would have a couple of minutes rest.

Eventually, they gave me an epidural so that the contractions had a chance to work. But when she crowned I stopped making progress. The dr came in and used the vacuum extractor to get her out. She had an unusually long umbilical cord and it was wrapped around her neck 4 times. It had just stretched as far as it would go.

With my son, I had gestational diabetes. I kept it under control. When my son was born, i was unable to deliver him. It turned out her was 10 pounds 2 oz. His head circumference was in the 90% along with his length. His weight was like 70%. I couldn't deliver him because he couldn't fit through the birth canal. i had a C-section. I remember in the OR that it got really quiet and then they started guessing his weight.

Both kids eventually ended up with growth problems and my son dropped below zero on the growth chart, but with treatment they both ended up to be at least average height. I however am probably below zero compared with other women my age.

I'm thinking about entering my data into the new MyLymeData database that lymedisease.org is advertising (not the right word but I can't place it right now). I'd like to see if some of the oddities my kids and myself have experienced.

Kim
Posted 10/17/2015 9:42 PM (GMT 0)
I'm 52. I have been thinking that I first got ill in 2004; however back in 1995 my entire family went camping at diamond Lake, Oregon and one sister was bitten by a spider that resulted in a bullseye ras!!! She STILL hasn't gone to see an LLMD, despite mine and other sister who got diagnosed in 2005, advise to do so...

Sister #1 who got bit in 1995=no diagnosis, no treatment, declining health; but is still working and somewhat active.

Sister #2 got diagnosed in '05' & continues to seek treatments, and is STILL suffering w/pain, fatigue, brain & heart issues. That's TEN years!!!

I was diagnosed 2014 and treated lyme naturally/holistically only one year; I'm now getting treatment for the gene mutation mthfr...that gene mutation plays a MAJOR role in successful treatment.

My sister with Lyme and treatments of TEN years now, she discovered the gene mutations ability to prevent efficient treatment and has suffered longterm adverse reactions by/from overuse of antibiotics!

It's sad, but truth be told; if Lyme and co' s are not successfully eradicated within one year; then it's highly likely you're in it for life due to the gene stuff!
Posted 10/17/2015 10:00 PM (GMT 0)
Sweetpeaisme - I would be interested in knowing more about MTHFR gene mutation and what treatment you are having. I have a1298c but only one copy. I also have HLA 15-6-51 but nobody seems to know much about that either.
Posted 10/17/2015 10:09 PM (GMT 0)

sweetpeaisme said...


It's sad, but truth be told; if Lyme and co' s are not successfully eradicated within one year; then it's highly likely you're in it for life due to the gene stuff!

I'm going to have to disagree with that statement. I know of many cases that have taken more than a year to irradicate and they maintain symptom free.

In fact, I believe Traveler took more than a year total for both lyme, bart and babs treatment to rid her of symptoms.


Sometimes it takes a few trials and errors before you realize what all needs treating...and it doesn't mean that if it's not all figured out in the first year...then you won't heal.
Posted 10/17/2015 10:23 PM (GMT 0)
My 13 yr old son has the HLA mold gene and mthfr and so do I. My other kids haven't had testing for that. My 13 yr olds lyme dr moved to Cali., we live in Maine. He isn't in treatment and never finished or got far into treatment. My three old who I believe was congentially infected was bitten by a tick in August and is currently on amox and had many weeks to go. My 4 yr old cried about leg pain all the time, he hasn't been tested. My 16 yr old daughter had a bullseye at two years of age and had like 10 days of amox and I realize now has had symptoms since early toddlerhood. My 11 yr old has balance issues to the point that he could not pitch in baseball anymore and has ADHD like symptoms along with strange food allergies. My 15 yr old son suffers with anemia and protein deficiencies and gluten intolerance as well as hashimotos like my daughter and myself. It really sucks and I don't have the financial resources to get us help. I am reading Buhners book. Sometimes I have to put my car in park at red lights because I can't hold my brake pedal down. I have to put my head in the sand sometimes because I any take the heartache. My kids all have anxiety issues and I know it's lyme. My daughter and I both have electrical conduction issues and see cardiologists. Very scary stuff....... I need iron infusions constantly because my iron levels won't stay up. Now I haven't had a period in three months and I am like clock work every 28 days, this is really bizzare for me. I'm in my late thirties... I have 90k in student loans for my nursing degree and I can't work. It's like so many others stories, it is sad and it's an injustice of obscene proportions that nothing is being done.
Posted 10/17/2015 10:51 PM (GMT 0)
I feel blessed to have found mine so early. Had a bite mark. Not a real bull's eye, but a definite red circle. I did not think it was anything to be alarmed about. 6 weeks later I got a head ache, swollen glands and an unusual sore throat.

I knew something was WAY off.

Off I began on this adventure.

Now??? Well, if I know you, you are probably aware that lyme exists in our area. And, if you get bitten by anything I tell you to go to the doctor and DEMAND doxy! Who cares if you unnecessarily take an antibiotic for a month or so? It is not worth the risk to just poo-poo the bite as being nothing.
Posted 10/18/2015 12:20 AM (GMT 0)
I need to correct my previous post;

I'd meant to refer to people; Lymies who havent gotten better after 1-2 years of Lyme & Co's treatment, that PERHAPS it's due to their bodies inability to detox- due to the gene mutation(s)...it's what's happening to my sister who is an Rn and a Lyme coach; she's still got symptoms after YEARS of antibiotics and has antibiotic overuse syndrome!

Also, if I remember right Traveler had gotten 're-infected' w/Lyme; which would require starting treatment again-????

I suspect that testing for the gene mutations will become 1st test route in chronically ill peeps!!!
Posted 10/18/2015 1:08 AM (GMT 0)
Yes, Traveler got re-infected and healed quickly from that infection - but first time around - I believe lyme and bart - approx. one year total treatment, then babesia after that for several more months.
Posted 10/18/2015 4:19 AM (GMT 0)
Sweet pea, I was first infected with RMSF at the age of 7 (1970), Chronic Bartonella by age 8, and late stage Chronic Lyme by age 9. I lived in California at the time to boot, so no one had any clue what was wrong with me.

I was diagnosed by a well respected LLMD - Dr. Edwin Masters (RIP)- to have all of the tick-borne infections because of the number of symptoms I had, and how severe they were - but it got worse, at lot worse for me before I finally healed.

I finally found my way to a wonderful practitioner that was capable of using herbs, Traditional Chinese Medicine, and acupuncture. But first, she tried talking me into checking myself into the hospital because, in her words, you're seriously ill and need immediate help". I refused to go to the hospital for a number of reasons, so she relented. We did nothing but work to get my body detoxing and all body systems functioning again for the first 6 months.

I then spent the first 12 months treating Lyme, with the last 9 months of that time treating Bart as well.
Then we spent another year treating for Babesia, Anaplasmosis, Ehrlichia and others. At that point in time my doctor had to quit her practice and move out of state to take care of her parents. I was pretty scared to stop treatments, but I had no choice, as I live in a very rural area, and there are only 2 other practitioners, but they don't have the expertise I needed. I checked with them.

I hadn't hardly finished treatments when my Father-in-law's health declined greatly from Alzheimer's, so we remodeled a bedroom, and moved him in. We only had 3 months with him, but it was intense, with my hubby and I taking turns sleeping, eating and watching over my FIL.

My brother kicked my Mom out - because when it rains it pours - so before we even had the funeral for my FIL, I had to find an apt for my Mom, and then the day my FIL passed, we had baby goats born, which for us meant 5 feedings a day for the first week, plus two milking every day. So my stress levels were very high, yet I didn't relapse.

What did happen was that my adrenals crashed, taking my thyroid with it. I was in treatment for that for 3 months when I got reinfected with Lyme. I used the same herbs that had healed me before and I am once again with out ongoing symptoms.

Most people want to know what symptoms I'm left with, and it's basically nerve damage which may still heal. Nerves can completely regrow in 7 years time, and I still hold out hope for more healing.

I'm saying all this to say that it's never to late to try, and I know I'm not the only one with a story that's amazing. We have had several other members while I've been a Mod have amazing stories, several amazing stories are in the making now, and I know there will be more to come.

I was never tested for the gene mutations, but if I had had the opportunity, I would have hoped I would have had it done. Instead of years of struggling trying to get back on top of all of those toxins, I might have been able to do it much quicker. Even after I realized I was reinfected, I decided to not spend the money since I already knew how to get my body to detox. I know see that decision wasn't in my best interest either, as I still need supplements to keep everything working well and staying healthy.

Always hold out hope for healing. Never discourage people from doing all they can to heal, as no matter who you are, if you've been sick for a while, it's going to be hard to heal.
Posted 10/18/2015 9:10 AM (GMT 0)
Maine:

What a place you are in--I'm so sorry! I can attest to Buhner protocol. I did my own tinctures to save money--it isn't rocket science and I am symptom free as long as I don't skip the drops, which unfortunately I do, because I feel better and I get preoccupied with everything but the drops. I hope you find something that works for your family and you will all get well. I was a mess and I did abx for a year, was ok for about 5 years but then the symptoms started to come back after my son got sick-not as bad but bad enough to get my attention. I didn't go on abx this time around, I am only using the drops.
Posted 10/18/2015 4:20 PM (GMT 0)
Simela!! While I'm sorry to see you back here, I'm also excited to see you again!! I'm also so very sorry to hear about your son. It's hard when our kids are affected.

Gkamom - I don't usually talk about what I went through with my pregnancies and the labor and deliveries, because it's what nightmares are made of for pregnant women. I had 5 pregnancies, with 2 live births - a son and a daughter. My getting pregnant was not a time that was symptom free, actually it made for new and interesting symptoms - although I didn't realize they were symptoms of anything at that point in time.

I won't go into details, for as I said, I surely don't want to spook anyone, but I carried each of my full term, live births 10 months, had very unusual labors and hard deliveries on both of them. I was told after the second child, that I only had a 40% chance of surviving the next pregnancy and the labor and delivery survival was worse.
Posted 10/18/2015 5:28 PM (GMT 0)
Trav: Great to see you :) I posted an update about my son, he is much better! I guess I wasn't clear--I meant when he got sick last year/biggining of this year. I posted about him in another post because I do have a problem with the LLMD right now. Maybe you see that link? I posted something for you in there as well. I just posted it this morning. Would love to know what you think.
Posted 10/18/2015 5:38 PM (GMT 0)
Going to look for it now. Thanks, Simela! I'm really happy to know that he's not really sick now!!
Posted 10/20/2015 3:40 PM (GMT 0)
Thank you all for chiming in. At the time I started this thread I had to much going on and was feeling very overwhelmed. I think I read one too many posts that mentioned having had Lyme "long term" while at the same time mentioned a 2-4 year time frame. Actually, now that I think about it I think it was an article from a medical journal which really set me off.

It's really hard to hear people talk about how they have been sick so long and its so difficult to deal with treatment and then "so long" ends up being 2-4 years. It feels like a slap in the face.

I don't wish anyone ill. It just makes for some really difficult moments. I'm sure that I have missed reading information that could be very helpful because I skipped the thread after hearing that.

I think that the criteria for long term should be when you no longer know what normal feels like. I came up against that in December. My daughter graduated in December and was moving out of state for a job, so we planned a "last" family trip. We decided to do something special that we have wanted to do for a long time. Well, all of us except my 16 year old who lobbied real hard to stay home, by himself, NOT.

We decided to go to Hawaii. How on earth I thought I would handle that I don't know but mind over matter. It so happened that I had an appointment with my Rheumatologist just before then and we discussed how to handle problems with me contacting him during off hours. He had recently (like 2 years ago, LOL) moved from his solo practice to a large group practice. Good for him because he can just see patients without dealing with insurance and things. But the group practice sucks.

His intake nurse is incompetent. She actually wrote me 3 months of scripts for pain meds all dated the same day and if I wasn't conscientious I could have filled all 3 on the same day at different pharmacies. It would have taken 3 months for the doctors office to catch up with it. I ended up having to go back to the office to give him the scripts so he could destroy two of them and have them rewritten. I didn't want to call and leave a voice mail about it so I called for another appointment.

That was the reason we were talking about my ability to contact him. We spent most of the time talking about how to circumvent the system so I could actually talk to him. He asked me if I had ever tried Prednisone. My response was "I love Prednisone". I know now its contraindicated but at the time Lyme wasn't in the picture other than a suggestion made by another doctor for being tested".

I have lots of experience with Prednisone because one of my issues is allergic reaction. When it's a skin rash, it takes hold and becomes systemic so the only thing to stop it is steroids. I once had a reaction that took 7 weeks on a high dose of Prednisone to clear. The dermatologist said I was in the top 10% for bad reactions of the people he sees, so my reactions get pretty bad. Because of my history with Prednisone, I also know that when I come off it my body gets slammed and I end up in bed for a week to a month depending on the length of time I took. But when you compare an all over body itchy rash to having to stay in bed for a while the rash always wins.

So the point is he asked me if I would like to try it for my trip to help me through it. Of course, I said yes and of course the dosage he gave me wasn't enough. I ignored the directions and took the dose I needed but I did run out and needed to have it refilled in Hawaii. What a nightmare.

But the end result was most of my symptoms melted away and I felt normal for the first time in 30 years. So it was heart breaking when I had to stop the Prednisone. Of course my body was slammed and I spent a month in bed but I did enjoy my vacation. I even climbed Diamond Head. Very slowly with two trekking poles being passed by 80 year old grandmothers. At one point in the climb there is a tunnel that has regular stair steps. When I came out of the tunnel, someone took my picture. It was a lady I had talked to on the way up. She had encouraged me during the hike up. I was (and still am) a complete stranger to her. We didn't exchange information and I don't have that picture, but I'm sure somewhere on Facebook is picture of me with a comment that talks about perseverance. She really made my day.

But it was and is heartbreaking to have that glimpse of what I would have had if it wasn't for a darn tick. Thirty-five years wasted, but I probably wouldn't be the person who I am now without it and I can say that even sick I have been a great role model for my kids and I hope for my Girl Scout troop all of whom are grown now.

So yes Traveler I agree that it's the most difficult thing that many have experienced so 2-4 years feels like long term to them. I really don't begrudge anyone that. I want everyone with this darn disease to get well. Someone else made a comment (sorry I can't remember who) that after a while you stop looking for an answer and that is absolutely true. It probably is the reason why there aren't many people on here with decades worth of being sick. I just happen to be a person that has to have an answer and a diagnosis of Fibromyalgia is not an answer it an ICD code for health insurance.

Traveler if you have pictures of your baby goats I would love to see them. I don't remember who but someone had baby llamas. I'd love to see pictures of them too. My kids make fun of me because i watch animal videos on youtube but that's ok.

Hope everyone has a good day,
Kim
Posted 10/20/2015 5:52 PM (GMT 0)
Hi Kim,

I'm 25 and I've had Lyme most of my life. My worst symptoms started 11 years ago, but we don't know when I was infected. I was able to complete college and work, so in that sense I have a "normal" life, but I don't know what a symptom free life is like. I agree with the frustration, especially with people whose success stories come around and their entire Lyme journey is less than a year. Wouldn't that be nice?

I try to be positive because now we finally know what is wrong with me and I'm on the road to getting it resolved.
Posted 10/20/2015 6:18 PM (GMT 0)
Kim - I have had symptoms since April, 2013 - so I fall into the 2-4 year timeframe.

2 years of hell - is still 2 years too much.

I know someone who has had it for longer than myself, but she has less symptoms, and most of them milder.
For me, I haven't been able to work...don't know how I will be from day to day - having to cancel out on many things.

So, I think there are a lot of variables. Mine hit pretty hard and fast...so to me it's hellish.
I do know it could be worse - I'm not in a wheelchair, not having seizures....so I try to count my blessings...but it's hard...very hard. I read IHL posts and think - wow...what have I got to complain about?

I can't imagine having this for 10 years or more...it's unimaginable.
Posted 10/20/2015 11:39 PM (GMT 0)
Sayyadina has the Llamas and she's kind of busy right now. I will be more than happy to share some more baby goat pictures, but I no longer have my goats cry. I had to gift them to my son 2 years ago when my adrenals crashed yet again and I could no longer take care of them.

And I can most certainly identify with your sentiments about when "long term" starts, but like Sarah, I don't know what a normal life feels like either. I have noticed that there are only a very small handful of people that have had these infections for 40 years or more.
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