September 7th, 2012 – One Year

It has been exactly one year since I started this journey and fighting the hardest battle I have had to face in my life.          Image

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Here is some, but not even remotely close to what I have taken for medication and supplements in the past year. Ok, I may be a sliiiigggghht hoarder. But reader who does NOT have Lyme, you can see just how serious this disease really is. Lyme is not a joke. Chronic Lyme is real, and I am living proof. B-12 shots, all my supplements, oral antibiotics, heart meds, seizure meds, anti-crazy pills, sleep meds, tinctures, my IV pole adorned by the morning’s IVs…. 

One year ago, I limped into Dr. S’s office, whom I had never met, and poured out every little detail about my past several years and how I spiraled downhill. At that point I didn’t even think to go back to when I was a child. I mentioned my car accident from when I was 16, and in the more recent years I discussed more recently the more frequent passing out, my ovarian cyst, how I was diagnosed with fibromyalgia, CFS, IBS, anxiety, and depression. I wasn’t remotely depressed by the way, my previous Doctor said I was crazy because my Mother is crazy and recommended me to be medicated…. dick. And the list goes on. 

I was skeptical as he was a naturopath and thought it was all chewing on leaves, cinnamon sticks, and giving 10 “Hail Mary’s”, and you are cured. 

I know different now and personally feel naturopaths are the best doctors to make a visit to, as they look at the whole picture and fix the problem, not just treat the symptoms. I had several dead ends before my visit to him, (I am sure a lot of Lymies can relate) and no real answers time and time again. 

As I divulged my life story, Dr S typed a million miles per hour his notes, yet LISTENING TO WHAT I HAD TO SAY *and the angels sing* and once I was finally done he said to me, “I think you have Lyme.” He also told me I showed symptoms of MS, but already had a plan to work on Lyme as he was positive this is what I had going on. He recommended me to visit a neurologist as well due to my numbness issues and to rule out MS or any other underlying causes.

Lyme Disease, huh? I thought to myself, ok… no big deal, easy fix. I will be back up and running in no time. As I always say, “rainbows, butterflies, and unicorns”. Phew. So glad it’s ONLY Lyme and nothing serious! 

 He began to talk about a Lyme antigen (PCR) test to see if I tested positive. Dr. S. then gave the longest spiel I have ever heard from a Doctor. I honestly had a hard time understanding a god damn word he was saying, as it kind of sounded like he took a huge breathe and explained everything in lightyear speed… like he had had this conversation before… a lot.  He said he was going to put me on a high dose of doxycycline to do the test.  Ok.. getting slightly scared..

Then he brought out my “big bag of goodies”. Glutamine, probiotics, a few neuro helpers,  and was told I could take my pain medication (prescription Ibuprofen) if needed and recommended to pick up fish oil while I got my doxy script at the pharmacy. Dr. S, you aren’t helping the situation of nervousness at all ! I thought this was the biggest bag of things to take in the entire world!

I was given notes about our visit, which was good because in one ear, out the other. The only thing I got from the conversation was that Lyme was more serious than I thought, he talked about herx reactions (what the eff are those?) protecting your gut, among many other things that sounded like the teacher from “Peanuts”. And that is why he does his notes. 🙂

He told me I handled it surprisingly well and many people acted much more upset. I was very naive at the time, but my mind was also flooded with thoughts of worry (he just gave me the biggest bag ever! *rolls eyes*), sadness (he recommended to cut back on work, which I loved), confusion (I didn’t really know what was happening), and happiness (someone finally listened to me, and gave me a direction to go in). 

As soon as I got in the car, the tears came and I bawled my eyes out my entire way home. I just didn’t know what to think or how to process all of this information. 

Sadly enough, knowing what I have been through now, this was probably one of the worst, yet one of the best days of my life. 

It was horribly sad and one of my worst because I never in a million years could have imagined that I would have missed out on being a 25 year old, onto my 26th year, with a PiCC line in for five months and two months of a power line in my chest, not knowing when I will get it out for sure, and going through what seems to be like a nightmare that I can’t seem to wake up from. You get worse before you get better, and I never could have imagined what was in store for me…

One of the best, because I finally had some answers. Some people would probably find this hard to believe that it was one of the best, but when your quality of life begins to deplete, you want answers. You want someone to listen, someone to fix it, someone to care. Dr. S listened. I had been waiting for answers for years, and he gave me an answer and has been a great source of information, treats patients aggressively yet cautiously, and goes above and beyond any doctor that I have ever met. He gave me a sense of hope that I could get better. 

And then my test results came in.

PCR test for some reason, two of the three had blood in them and the only other test was negative. Dr S then sent me in for a Western Blot (even though he was already treating me as a Lyme patient) and came back positive. 

IGM 

31 kDa IND 

39 kDa + 

41 kDa + 

IgG 

18 kDa + 

39 IND 

41 kDa ++ 

It was official. On paper. Igenex, ILADS, IDSA, and CDC positive. I have Lyme disease. 

When Dr. S. told me the news, I didn’t really know what he meant, but I know now..”You have Borellia and everyone is going to agree on that. What people won’t agree on is the treatment.” It is like kicking you when you are down when you are so unbelievably sick, and people either don’t believe in Lyme, or don’t think it can last past 30 days, is easy to cure, or be as severe as it can be. Especially those in the medical field. It is an extremely controversial and political battle that I don’t see a remedy for anytime soon, unfortunately. That is why it is so important to advocate, and hope that people will listen.

I had no idea what a tough journey this would be. I would not wish what I have gone through on my worst enemy. Like I said, you get worse before you get better. I have been worse since the third or fourth day I took doxycycline. My “leg problem” became a REAL problem, a scary problem.

 I began to shake, and everything throughout my body hurt. My leg numbness became LEGS numbness. Many of these antibiotics have caused me terrible nausea. I almost blame Omnicef for starting my tics. Since Omnicef, at the end of October, I have never been the same neurologically. If you have not seen it yet, there is a clip on my June entries that I sent to Dr. S to see what the heck I should do.

 It definitely stirred something up in my crazy head. For many, this is an invisible illness. For myself, this disease has been anything but. Shaking, rocking back and forth, myoclonic jerking, Tourette’s-like outbursts, and just plain looking sick. 

I don’t know which is worse. Looking fine and being sick, or having people know there is something wrong with you as it is blatantly obvious. 

It was at that point that co-infections came up. Although the co-infection tests are even more unreliable than the Lyme tests are, I tested positive for anaplasmosis and mycoplasma (which can be tick transmitted, discovered on a later test), but have and will be on future treatments based on clinical diagnosis for Bartonella and Babesia. And I think they hit the nail on the head on both. 

Dr. S decided and recommended me to go to see Dr. J in early spring. He knew I needed more help than he could give me, mostly neurologically, and so I went. Quite a hall, but I am sick of being sick, and it was time to see the best of the best. And so a new chapter began.

There have been some good days that I had much more functionality, more so during my second “break”, that I took because my immune system was crashing, my organs needed a break, and my body just needed time to level out. It seemed like at that point I was getting phone calls and e-mails constantly with another deficiency, another disorder, another infection and was constantly at the hospital, getting a test of sorts or appointments, one after another.

I think my two best moments throughout being so sick were during my second break, one being the first time that I made it through my local grocery store with Dave. It was only to pick up a few things, but I hadn’t been to the grocery store for nearly a year. You get really happy about the small things, especially when you haven’t been able to do them for so long.

The second was also during my second break, when Dave took me to the ocean as a last hurrah, since I was going to be headed to DC and knew I was going to be starting IVs again. It was a beautiful day, we spent it laying on the beach and the ocean water was warm enough to go in, and I played in the waves as they came crashing to the shore. We went to one of my favorite restaurants on the way home. It was a good day. 

There have been a lot of scary moments, the worst was on my high rocephin dosage and cipro at nighttime while in bed. I thought something was seriously wrong; I had a hard time breathing and was in so much pain I did not know if I would wake up if I fell asleep. I did nothing. I said nothing. I turned over and looked at Dave, seeing how peaceful he looked. I have shared this memory before, but that night, for just that one night, I gave up. I didn’t care. 

I didn’t understand how the hell someone could feel so terrible and still be alive. These were the times that I had several days that I couldn’t as much figure out how to hold and use a stapler at work, or hold a fork to be able to eat. Constant seizures and the tics were nonstop. It seemed never ending. I hope to never go back to that point in my life ever again.

Having chronic illness has taught me some of life’s lessons. It makes you not take life for granted and live for each day. It makes you realize just how important your health really was to you. It makes you realize who is your friend and who is not. Some have disappeared, and some have been so caring and supportive throughout all of this. These amazing people I owe about a million and ten favors to. And even though I have been sick for so long, there is such a thing as true love and a “for better or for worse”. Many people aren’t so lucky. 

Despite all my difficulties, my spirits have remained high, and for the most part I have remained positive, and the rainbow, butterfly, unicorn feeling has kept me going throughout all of this. 

Without it, I don’t know how much worse I could have been, how much worse I could be. Positivity is needed tremendously for healing. Positivity and hope. 

And now one year later, I am not sure what lies ahead. I just keep that positive feeling, appreciate the good in life as it isn’t all bad, and pray that I will get better, even if it is just one day at a time.

22 thoughts on “September 7th, 2012 – One Year

  1. Hi! I’m so sorry you have been stricken with this horrible disease. My husband has been fighting it for about 10 years, but for the first 3 or 4 he was misdiagnosed.

    I would like to know if you have amazing insurance that pays for the IV treatment…or if you paid for it privately. If private, what was the cost? Our insurance won’t pay for it is the only thing we haven’t tried yet because our lyme Dr. said it was about $16,000 for 6 months!

    I look forward to hearing from you.

    Ingrid Jackson

    • Hi Ingrid – Most Insurance will not cover long term IV care. I have fought hard and I believe all my doctor visits will be covered though and my weekly dressing changes (350$) are 100% covered.

      I would recommend if he has other conditions (caused by Lyme) to see if he could qualify for federal insurance. I qualified from seizure disorder, hepatitis, which was drug induced from rocephin, Babesia (which is covered but not Lyme which is strange), mercury and lead poisoning… etc. It really helps. Worth a shot anyways. It is called PCIP.

      My IV medication is all out of pocket, and it really depends on what you are taking. I was told my medications for 7-8 months… just my IV meds would likely be 35 to 40,000$. All out of pocket. It really depends on what you are taking though. Rocephin is cheap compared to the others, but you should also not be on the same antibiotic long term, you need to rotate… and I did not know that at the time. I am fortunate and have the help from my family, but I need the IVs to get well. I need to penatrate the brain barrier due to severe neurological symptoms and do not tolerate orals very well.

      I hope to one day use just herbals as a maintenance, but I have a long way to go to get to that place.

      Add: I was given a source as to information about insurance. Go to mdjunction .com and go to our TIPS FORUM; look for a post on INSURANCE; if not one of the stickies; look in the index and there is 1 or 2 links there with detailed info as to try to get it covered 😉

  2. I was diagnosed 12 days ago and am on doxy which is making a huge difference. I’ve had symptoms for 3 years at least. Had not been tested previously; chalked up exhaustion and flu symptoms to just lifestyle and having little kids. So I’m staying up late and reading everything I can. Kimmie, your blog is great, and your honesty is much appreciated. I am creating a lot of ?s for my dr., since I’m at the beginning of treatment, as a result of reading your story. Thank you for that.

  3. Please try the natural route. I know of many who used *DAILY* ozone, Buhner herbs, liver support (milk thistle, dandelion, etc.) B-12 shots, and strong doses of vitamins (A, B, C, D, K) and alpha lipoic, fish oil, green tea extract, etc. who had good results. No prescription drugs. None, because they wanted to keep their liver/body free from any toxins.

    • I have tried many of those routes and actually use those as supportive supplements. It was not enough to me due to the severity of my neurological symptoms and I needed to penetrate the brain barrier. I am in good hands now,as I am seeing one of the world’s leading Lyme specialists. He has a 90% success rate, so I am confident I am going in the right direction. I also feel more comfortable as he goes with a pulse treatment, and carefully monitors how I am doing with weekly bloodwork.

  4. Kmee,

    Thanks for sharing your story and going into such great detail. I really appreciated the detailed list of drugs you have taken and will ask my LLMD why my treatment is not more aggressive (I think I already know because they believe so much in alternative medicine like supplements). I am only on 1000 mgs of Ceftin/day and 1000 mgs of Flagyl/day for 2 days/wk. Plus certain supplements. Was also wondering how you went anywhere (like to work or to a store) with an IV or PiCC line in you? I live alone with no family or friends nearby to help me with anything so not sure I could try IV and almost sure I could not afford it anyway unless my insurance does cover it.

    I know what suffering is like as a genetic illness has plagued me for 39 yrs now and destroyed my life. Then along came these new symptoms 10 years ago. So that meant more MDs to not help me, treat me badly or insinuate I am a hypochondriac. Then I found an LLMD without knowing he was one and not even thinking I had Lyme and he, thru extensive blood tests, diagnosed me with not only with Lyme (IgeneX labs) but 2 mold infections, candida, 2 active herpes viruses (HHV-4 and HHV-6), mycoplasma pneumonia and was low in Vit D. Was quite shocking and mind blowing. I knew I had something wrong with me and was getting worse thru the years but ALL those things together really gave me a jolt.

    Anyway, you went thru such great detail that you made me relook at my IgeneX Lyme test results because I wrote on a Lyme Awareness group on FB what IgeneX and LLMDs say Lyme is verses what the CDC, NIH, IDSA and the medical establishment call it and now I realized I miswrote something in that post and now will go back, try to find it and fix it. I mean this In the nicest way but just thought you might want to know that for your IgG tests, the CDC, NIH and IDSA would NOT consider you POSITIVE for lyme nor would Igenex.. If you reread the comments above your results for what is positive and negative, the criteria are different for the IgM and IgG tests. To be positive on an IgG WB test according to the CDC and company, one needs FIVE positive bands for a positive result. You only have two. IGenex says one only needs two DOUBLE STARRED BANDS on the IgG test to be positive but you only have ONE double starred band. So, you correct when you wrote that you are positive for lyme according to your IgM tests results by ALL the groups you mentioned (CDC, IDSA, Igenex, etc) but NOT by your IgG results. I am told IgM means more recent contact and IgG means past exposure.

    Did not want to bring this up to upset you or be an antagonist in anyway. Know you are dealing with enough but since you listed your results and claimed that ALL groups consider you positive by BOTH WB tests, that is not correct. If you read those notes above your tests results from IgeneX, you will see what I mean. I am sure you would want someone to bring your attention to that fact.

    Thanks again.

    PS I have no idea what your relationship with your mother is or what ails your mother but I guarantee you she is NOT crazy. Maybe you were just kind of “winging it” in that part of your story but I am sure she has a diagnosable mental illness(es) and/or psyche disorder(s) and/or personality disorder(s). I know how much Lymies, people with CFS and those with Fibro for example, dislike it when people do not believe they are sick, tell them they look well, MDs treat them badly and it upsets them if people are unaware of or uneducated on their illness. The same is true for people with mental maladies. Plus, there is such a stigma attached to mental illness and psyche disorders that most physical illnesses do not carry. Just wanted to point out that contradiction.

    • Yes you are correct on the testing, however I was positive by all standards either way by the first category (IGM), still positive by all standards for current infection. The second category (IGG) was considered negative, but a good LLMD would consider the other a positive as well.

      Sounds a lot like myself, it is scary to hear every single thing wrong with you. I have a lot of similar positive tests as you and have had a few others as well. A lot of my regular bloodwork was absolutely horrible for awhile, constant liver and pancreas issues, RBC and ferritin levels completely out of whack, but once I stopped rocephin a lot leveled out. I am currently being monitored every week and I like the idea of a pulse treatment to give my organs a little break 😉

      My mother was diagnosed with Dissociative Identity Disorder, which is also highly scrutinized and misunderstood, (Multiple Personality Disorder) and I can say at the least, having someone with mental illness such as hers was not a lot of fun growing up. In short and quick terms it means that she believes she is someone else, as it is a form of coping with things that have happened to her. I could write a book about my experiences in dealing with that, but I love my family, and I would never cross that line with them.

      I have mind over mattered just about everything, from vomiting all over myself driving, to feeling so ill and weak, the hospital would not even let me try to walk the short distance from the entrance to day surgery to get my line changed. I don’t do a lot, as I am still not strong enough to go into a grocery store without supervision (haven’t been well enough to do so in a few months) and I pretty much just grab a coffee at my local convenience store. I am lucky enough to have a lot of help along the way, with my husband taking over the household duties for the most part, and good friends that help clean and wash my hair when I need help. My mother in law often comes over to take the burden off of Dave and brings over dinner.

      Just because you have a line in, doesn’t mean you can’t do anything at all, it just depends on how you feel during the day and some antibiotics kick your butt worse than others. I am generally hooked up to my line for a couple hours a day right now, but I spend that time watching movies and writing. Although I only work for a few hours, I need to get out and do something as often as I can, or I will drive myself crazy. I hate living on my couch. I would rather try to do something, even if it is cleaning, and pay for it later, than just sit. I walk much better than I did 6 months ago and can stand a little bit longer, even though I have to lean or hold onto something, so I do as much as I can.

      I fortunately have financial help. I had mentioned I have a pre existing insurance, Lyme disease does not qualify but I qualified because of drug induced hepatitis, pancreatitis, lead and mercury poisoning, Babesia, and seizure disorder. It is called PCIP. If you have an insurance agent I would recommend. Does not cover IV treatment but helps tremendously with other stuff. For example, my prescription Deplin (folate I think) was 150$ with my old insurance, and now it is 60$. My Mepron for Babesia was 1,400$ for one bottle, and I only had to pay a 40$ copay. A huge help.

      Someone from a website called mdjunction recommended under a section about insurance, how to try to go about getting your IV antibiotics covered. I am going to set up a claim and try to see if I can get anything reimbursed. It is worth a shot!

      Some people’s treatment protocols are different than others. No Lyme case is the same. If you are not seeing any results or changes (herx reactions or improvements) I would definately suggest something else. There is nothing wrong with natural treatments, it was just not enough for me at the time but would love to get well enough I could use them as a maintenance therapy.

  5. Kmee,

    Thanks for your quick reply and being very understanding about where I was coming from, It was and is so obvious how much you have been suffering so I hesitated to bring up the whole Igenex test issues but I have a perfectionistic part of my brain that drives me to point certain things out. Plus, it was your posting of your results, as I already wrote, that made me reread mine and made me realize I was overgeneralizing about how the results work to others with Lyme so I should have just thanked you for that. Because of your blog, I now know the real difference between IgM and IgG lyme results. Of course, as I wrote in my previous reply, I agree with you 100% on your IgM test results and yes, depending on the LLMD, he/she could see your IgG tests as positive as well. IgeneX even states to retest within 4-6 weeks or use another method if you have one positive band or one “IND” band on your IgG ( and maybe IgM), so anything is possible. Plus, as we know, Lyme is a clinical diagnosis based on both blood tests and a patients symptoms.

    Thanks for that advice about IV’s and PICC lines. Since my LLMD has not offered them, I cannot worry about cost yet. I have been to a 2nd LLMD who also specializes in Rehabilitative medicine and he was impressed with LLMD #1’s extensive blood tests and all the different labs he uses for each type of test but disagreed with the mold infections diagnosis (aspergillus and pencillium) because he claims those blood tests are unreliable. It is uncanny how many symptoms that mold infections (in ones GI tract) and Candida have in common with Lyme. I did not go back to the 2nd LLMD who is much closer to me (my other one is a 2 1/4 hour drive each way) but since he wanted me to do so many things outside of his office (ie find a PCP, get full physical, get MORE blood tests, get copy of chest x-ray and bring in ALL meds, supplements, etc) and I am so sick and weak it was impossible for me. Plus, he has a very intense personality so not sure would have used him anyway.

    The reason I brought your mother up and that I referred to my perfectionistic mind is that I have had OCD since age 15 and have suffered terribly because of it but I know that 99% of the general public has no clue what it is or at most have heard about some well functioning celebrity claim they have it so I am sure they think “how bad could it be?”. Unfortunately for me, mine got to the worst level known as “extreme” which is completely disabling and one can become housebound for a while especially if not getting professional help. Some years ago, the World Health Org (WHO), part of the UN, called OCD “one of the 10 most disabling conditions in the world”. That is partly true if one is severe or extreme but an OCDer with a mild case would certainly not be into that category of “most disabling”. A mild OCDer can basically live a normal life without medical help and just deal with minor obsessions and compulsions on their own. Anyway, that is why I was a little sensitive about your mother and I am sure it was very hard growing up with someone who has DID (aka multiple personality disorder). I have read extensively about OCD but have read about so many other mental illnesses, psyche disorders and personality disorders. I had a physically and verbally abusive father growing up (no day at the beach) and he has continued to be verbally abusive throughout my life and does not seem to believe in my physical illnesses and seemed to go back and forth about my having OCD. I just try to minimize my contact (we live over 1000 apart but holidays and some family functions do happen closer to me and my parents attend some). You are lucky to have the support and help from family and friends that I have never had. I see that as a major godsend and have known for years how valuable that is to anyone who has a major physical or mental illness.

    I have had tremendous financial help from my parents for years but they are elderly now and money is tight so things are different. I have worked on and off thruout my life but I am in a period where I cannot work right now but luckily I do have insurance. So, as I get sicker and see all these script meds, over-the-counter meds, vitamins, supplements and diets (mold elimination diet and candida diet) I am taking or doing, I do not know what too think. I am getting weaker, sicker and in more pain, Plus, after years of improvement with my OCD, I started feeling sick about 20 years ago. As you know Lyme has neurological symptoms including anxiety as do mold infections and Candida so as one with a pre-existing condition, it is making my anxiety and OCD worse and worse again. Unreal! I feel, some days, it is my worse symptom.

    Sorry about using your blog to vent and just letting my feelings out and talking about my illnesses but I do appreciate it. Again, I do appreciate your calm and measured way you replied to my original post as some others might have misinterpreted and attacked my well meaning but slightly antagonistic writings. I am sorry to see you have been dealing with other illnesses as well. I know that is a lot to deal with. Sounds though, that you have a great hubby, great mother-in-law and great friends. Would love that myself (GF or wife, not a guy of course, ;)).

    Thanks again for everything and I hope your progress towards 100% health continues and you find yourself in a better place next year.

    Take care and best wishes.

    Tom

    .

    • No sweat, Tom! And thanks! Some LLMDs do not offer IV, so I would ask. Hope you find the right treatment plan for you. I love my naturopath in my hometown, but at least he was honest and said I needed more than what he could give me. My other Doctor working on me was more about trying to get her gold stars as I was one of her more severe cases. I know she meant well, but in the end caused way more harm than good. And that is why I travel from NH to DC. This is the first time in nearly a year I can go hours without having verbal and physical tics. I am starting to make some progress.

      • Wow! Isn’t that something that we live in the same state. I am not a native of NH but moved here several year ago. I see an LLMD in western MA and saw the 2nd one up in the Lebanon area. There is an LLMD that practices in Concord but has a 6 month waiting list, so I never applied to go there.

        I assume your LLMD in DC name starts with a “J” and I know one person that went there and she listed all the meds he had her on. Wrote that her 1st appointment lasted for hours while seeing several people. The weird thing is she dropped out of that Lyme SG shortly thereafter, so not sure how her treatment is going but I know he is expensive and is cash only (no insurance). Sounds like you have finally found the right MD/ND and are on a good path.

        I assume NDs are not covered under most insurance plans so probably not in my future. I might try to see a LLMD down in CT where I have a sibling living. One way or another, I am sure this whole thing will work itself out.

        Lastly, I have seen so many MDs up here in NH and down in the Boston area with little help. The irony is that I noticed just a few months ago that I had two Lyme tests before seeing an LLMD this past Jan. I never thought I had Lyme so really did not remember those tests. Both tests were negative (one in 2004 and another in 2009) but I started feeling sick in Jan of 2003. Of course, the 2004 test was done by a ID doc down at the Leahy Clinic outside Boston so now know to discount that test. I saw two other MDs down at the Leahy Clinic with zero help.

        It has been great corresponding with you. Wish you the best and hope you keep feeling better each month.

        Take care,

        Tom

      • It’s a small world! I am assuming in Concord you are talking about Dr. D. I hear he is good but yes, there was a 7 month waiting period and I was told I needed help ASAP. Many people have a several month waiting period with Dr J but they got me in just over a month.

        Good luck to you too! I hear there is a few good doctors around the Boston and CT area. I actually got my naturopathic Dr. appointments approved by insurance, just not the supplements. Better than nothing! I of course had to appeal twice, but I really didn’t have too much leg work to do as my insurance agent was right on top of things 🙂

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