New Here – Checking In

[Lymie]

I'm so glad to have found your site. When I feel better I'll add to my history but for now let me introduce myself. 

I've had a myriad of health problems since my 20's. I'm in my mid-50's now. In a nutshell I've had my thyroid and gall bladder removed, developed Celiac disease, Raynaulds (secondary), have suffered with severe pain, muscle weakness, fatigue and cognitive probs and horrible mood swings on and off pretty bad for about 2 years. Before that I had pain and fatigue but less severe and fewer bouts or flares. My doc said I had  mixed connective tissue disease. I was given a DX of Fibromyalgia too.

I thought I had exhausted my resources last year when I had suddenly gotten really bad and went to an endocrinologist, a top rheumatologist and my OBGYN. I figured one of them would find something. I thought for sure it was a hormone related problem of some kind. My OBGYN blew me off and told me I was post menopausal and there was nothing she could do for me. The endo-guy said everything looked fine. The rheumatologist said the same all I had was slightly elevated ANA. I resigned my self to a DX of fibrormyalgia. 

Well, only a few weeks after that, I was on a fibro board helping others to cope when a member said it sure sounded like Lyme disease to her. She sent me a couple of links and when I went to the first one I broke down in tears. I knew this was it. It just hit me in the gut – an AHA! moment. I had probably at least 80% of the Lyme symptoms on the check list.

I work outside for a living and have for 20 years. I grew up camping in a tent all over the U.S. As a kid, my idea of fun was crawling in the tall grass or tramping through the woods. I even had 2 small bulls-eye rashes in the last few years that were dismissed. Not only that but I had test after test for years and 2 times I was given the ELISA test for Lyme, so they were thinking “maybe” even then.

I kept getting new symptoms through the years. Sometimes they would go away. I was healthy enough otherwise so I think my body kept fighting “it” off successfully until it just finally got overwhelmed in the last few years. I also had some major surgery and emotional trauma within the last 10 years. I know those kind of things can trigger illness. 

I'll cut to the chase…….. I found an LLMD in my state and went to him a few months ago. I took Doxy for 2 months with no noticeable results and had to switch to Zithrowmax and Plaquenil because of the photo-sensitivity with Doxy. I'm not liking this regimen so much. It's too early to tell if it's helping. It's only been almost a month on it. I have a definite cycle of flares and symptoms – 28 days – and it just happens to coordinate with the full moon so I can keep track easily.

I had an Igenex Western Blot that tested positive for bb by their standards – not he CDC's. I had 2 ++ positive bands and one equivocal. It was IGG. The IGM was negative for Lyme with one positive band.

I'm stressing about what to tell my Family Doctor. I felt him out about how he viewed the Lyme controversy before I saw the LLMD but knew I would be seeing him. Not good. He thinks they are quacks. My LLMD is almost 2 hours away so I can't use him for a regular doctor. I don't think he does that anyway. My regular Doc is usually open minded about new ideas and didn't have a problem referring me to the specialists last spring when I got so bad. I think he has given up on me but  I don't know any other doctors I would go to. I've been with him for about 20 years. I don't want to tick (no pun intended) him off because until I get well, I need the pain meds and sleep aids he is willing to give me to help me cope. Without them I don't think I'd be here today. Life is not so good sometimes. I have such bad flares I just go to bed some days. I know others have it worse than me. I just can't imagine.

I've been on all kinds of meds. So far nothing has helped other than with symptoms. I do like Provigil for days I have to do things but don't have the energy. But I don't like to take it on a regular basis. I'm overwhelmed with all the info out there on Lyme. I don't like that my LLMD threw a bunch of new meds and suppliments at me at once. I didn't start them all at once. I slowly introduced each one to my system. How in the world would someone know which drug they were having a reaction to if they started 5 at once?

What can I say? I'm a skeptic. I've been burned too many times by too many people…… too many years of no one believing how sick I was. Am I allowed here?

I don't usually like the Lyme boards because they aren't scientific enough for me. Yes, I think Lyme is under diagnosed but I don't think everything that can't be explained is Lyme. I don't like the fact that if your post doesn't go along with their way of thinking it may disappear or you may be kicked off the site. It's never happened to me but I've known it to happen to others. It's not like that here, is it? I believe there are two sides to every story and I want to find out the answers for myself – not have them shoved down my throat. Sometimes the truth lies between the two sides.

I hate being sick like this. I pray every day to get better. I was full of vigor and vitality until about 5 years or so ago and just started really going down the tubes fast. Until recently, I was always in better shape than most people my age partly because I did physical labor type work for my job. But I've always been youthful and healthy looking. That's what I've been told. I still get  “But you look so good” which means they have a hard time believing I could be so sick. Well, I work on it before I go out! LOL! It would be a shock to someone who knows me if they were to stop by unexpectedly.;) I probably would not open the door. I get so tired of trying to explain what's wrong with me and try to avoid the subject unless it's really necessary.

So that's me in a nutshell. I left a lot of symptoms and problems out for now. I had no idea ABX was being used for autoimmune diseases until I stumbled across this site.

Anyone want to take a gander at what came first……… the auto-immune stuff or the Lyme? Or did I have auto-immune issues and then it was topped off by Lyme? I'm hoping the Lyme caused it and I can get at least somewhat better with the antibiotic regimen. Here's hoping!!

This post hs been moved from Personal History to General Discussion area of the Forum where it can receive responses to questions. The Personal History and Progress section the Board is for authors' journal notes only and cannot generate replies from others. RBFV

 

[eann]

Sounds like you have a lot of proof that Lyme may be involved with 2 bulls eye rashes and multiple tick exposure. If you are already seeing a LLMD, you know the general treatments for Lyme.

I am new to this board myself, but I welcome you. Your blood work sounds a lot like mine, only thing that shows is an elevated ANA. This board is for antibiotic therapy for rheumatic diseases. Lyme is just one disease involved.

I wish there was an easy way to recover your health, but that does not seem to be the case for most. There are going to be different things that work for different people.

This is a very supportive board and some folks here amaze me with their knowledge. I just started treatment for Lyme Disease and was diagnosed with FMS, CFS and RA before Lyme. I have always believed it was an infectious disease I was dealing with through the years.

Sincerely, Ann

[Lymie]

Thank you for the welcome, Ann.

 

I know I sound a bit cynical but………. I am. Plus it's a full moon so I'm at the height of my mood swings. I can't find any info anywhere about a 28 day cycle that's not attributed to hormones. This just started a couple of years ago. I had PMS when I was mensing but nothing like this!! It's horrible and I had it before I was diagnosed with Lyme disease and started treatment so it's not from the ABX.

 

Anyone have any idea how long it should be before you see some kind of improvement with ABX and Lyme? Or even any auto-immune diease? Its been 3 months for me so far.

 

Thank you. 🙂

 

 

[Maz]

Hi Lymie and welcome from me, too! 🙂

No…no posts deleted here unless they're inflammatory or attacking in any way. A couple of threads have been closed in the past if they've turned personal and detract from the central purpose of this forum, which is to discuss and provide support for our diseases and treatment…but this is a rare occurance and the people who come here are generally respectful of forum guidelines. Some folk may be very, very sick, so they don't want to be pounced on as soon as they arrive or checked at the door for their opinions. We just want to provide a safe place for people to vent their personal frustrations of their illness and to offer support on their road back to health with antibiotic therapy. 😀 So, very happy you found us, too!

The search box above is a really useful resource, so if you have any questions on your mind, you can just type in a few key words and all the past discussion threads on those topics will pop up.

Like you, I also only tested positive on IGeneX IgG on two bands (39 and 41) with some indeterminate readings on other bands. I didn't really need the test, because I had two EM rashes, which really says it all and is proof of Lyme. Not everyone has the tell-tale rash, though, or recalls it…Lyme can remain latent for decades. Once a person has Lyme and it becomes chronic, they pretty much have it for life…but the goal is to beat back the infections enough so that the immune system can take over and hopefully keep it in check. For me, it triggered rheumatoid arthritis, but it's triggered all kinds of things for other Lymies here, including fibromyalgia, chronic fatigue, scleroderma, palindromic RA, polymyositis, dermatomyositis, mixed connective tissue disease, etc., etc. Lyme is so immunosuppressive, too, that not everyone can produce enough antibody to test…can take years for some folk.

Have you managed to read, “Cure Unknown,” by Pam Weintraub yet or see the movie, “Under Our Skin?”

My PCP is not supportive of my choice of treatment either, but fortunately I haven't needed him as my LLMD is also an internal med guy. Not many mainstream docs are supportive of the whole chronic Lyme debacle as it's just so controversial right now, but there are folk here who build physician teams, going to one doc for one treatment and seeing another doc for Xrays or general day-to-day care. I've had a number of docs (endocrinologist and orthopedist) tell me my LLMD is a quack, but I credit him for saving my life. The proof of my treatments is in both my lab results and my progress while on longterm antibiotic therapy. That can't be argued, really…and the immune-suppressive alternatives are a lot more toxic, in my humble opinion, when there are chronic underlying infections.  

Lymie, you might find this short video clip from the Envita Clinic that specialises in Lyme interesting as it demonstrates how Lyme can trigger autoimmunity. In this case, it discusses the more neurological aspects of Lyme, but it basically applies to all manifestations of Lyme, as these spirochetes burrow into all tissues:

http://www.envita.com/sections/disease/lyme/default.aspx

In my case, there is no question that Lyme triggered my RA, as I believe I was infected about 12 years ago after my first tick bite, had a confounding of array of disconnected neuro and endocrinal symptoms that followed, and then during a period of high stress, I developed two late-dissemintated EM rashes. Within 2 months, I was flat on my back with body-wide pain and entrenched RA in all my joints, including my jaw.

I suspect total pathogen load (everything we've collected in life), all existing within bio-film communities, in addition to Lyme and coinfections is problematic, too, in addition to environmental toxins, ability of the body to detox, diet, genetics, vaccinations, etc. probably all add to this complicated picture. It's quite a journey to recovery, but in addition to antibiotic therapy, we discuss all kinds of supportive adjuncts here, as well. So hope you feel welcome and can share your wisdom and personal experience with us, as you make your way back to health. 🙂

Peace, Maz

 

[Maz]

[user=2209]Lymie[/user] wrote:

I know I sound a bit cynical but………. I am. Plus it's a full moon so I'm at the height of my mood swings. I can't find any info anywhere about a 28 day cycle that's not attributed to hormones. This just started a couple of years ago. I had PMS when I was mensing but nothing like this!! It's horrible and I had it before I was diagnosed with Lyme disease and started treatment so it's not from the ABX.
 

PS Lymie…just saw this…if you go to the following link, you'll find presentations by Dr R,  an LLMD in NYC…click on the first link, Newtown Rotary Club, and a few mins in you will hear him talking about hormones and Lyme…should help to explain why some women have such a difficult time with PMS and Lyme:

http://www.lymeresourcemedical.com/resources.php

Also, I have heard of the monthly exacerbations in Lyme. It's a pattern I experienced in the early days, too. My LLMD warned me about this and Maria, another volunteer here, shared something interesting with me recently. She said that these organisms are pretty primitive and, just as women's cycles occur on a monthly basis, like moon cycles, or women in close proximity coming into synch with their cycles…these organisms seem to be affected similarly, conferring survival strategies upon one another so that their reproductive cycles are in synch…they are also more vulnerable to antibiotics during these periods of time, which I think is pretty much accepted. Sounds completely whacky, I know…but in a funny way it makes complete sense, too! Maria may be able to elaborate for you more.

Three months is still very early days on antibiotic therapy for any rheumatic disease. I worsened significantly in my first few months and then started seeing some windows of light. Every time I change protocols, too, I get some herxing going on. It's a long-winded process, unfortunately…but I'll take that over bed-ridden agony any day!

Peace, Maz

[maz.aust]

Hi & welcome to the RB site,

This is one place where you will be able to get a lot of your questions answered & even better, support from each other.

Just an aside to everything else, have you had your magnesium & potassium levels checked ?? they can affect your moods as well.

Being from Australia I clearly don't know how you guys handle things over there, but perhaps your LLMD can take you on as his/her patient & treat you from afar, sending your prescriptions by mail or maybe you could have a telephone consult in between seeing him/her, it was just a thought.

There are a lot of people here who have Lyme disease & can hold your hand through difficult times.

Good luck,
Maz – Aust

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Parisa]

Hi Lymie,

I wish the road to treatment of Lyme disease were easy but it's not.  First, you have to deal with the skepticism of the primary who is also the gatekeeper of what gets covered.  Then you have to deal with the fact that Lyme treatment is a slow process.  Sorry, I wish I could tell you it was like having strep throat and you could start some penicillin today and in a couple of days you'll feel like yourself again.  Nope, it doesn't work that way.

As far as the autoimmune/infection theory, my own personal feeling is that certain people have a predisposed genetic tendency to react a certain way and when certain diseases are introduced it sets off the immune system.  There are people that have Lyme disease that do not have the autoimmune reactions that people here have so there is something going on.   However, unlike the rheumatologists, I believe that actually treating the infection calms down the immune system.  That was certainly the case for  my husband.  Prednisone, Cytoxan did nothing for my husband but worsen his condition and give him lots of other unwanted problems (pneumonia, cataracts, ostepenia, etc.). 

Bulls eye rashes are definitely clinically indicate of Lyme disease.  You don't need more testing than that.  Give your Lyme treatment time.  Have you seen the movie “Under Our Skin” ?  It's a documentary about Lyme disease and in it there is a park ranger who states that it wasn't until his third year of treatment that he made his most progress and that he was glad he hadn't given up treatment before then. 

Yes, the Lyme boards can be a little wild.  Just use them for research and ignore all of the commotion. 

[nspiker]

Hi lymie,

Welcome from me too, and welcome to RB. You have found a wonderful site for support and education, and best of all with people who don't judge, and open their hearts to one another. 

I would never have pursued lyme, if not for the people gently nudging me on this board.  I know you will find much camaraderie and support here.  Who knows if lyme causes these diseases, or if these diseases open the path for lyme.  There are many here who are in remission with lyme treatment, and many others that are on their way. 

You mention that you were initially diagnosed with fibromyalgia.  I will never forget going to a rheumatologist and asking for antibiotics to treat my ReA.  I told her that my symptoms abated with antibiotics.  She responded sarcastically, that she has fibro patients come to her with a UTI, and when given antibiotics, their shoulder pain improves.  Most doctors don't get the infectious process, but we do!:doh:

I have a past history of CFS, and all along I thought this new diagnosis of ReA was unrelated – NOT.  I probably had lyme or some infectious process all along, that kept my immune system suppressed.  It's only now that I'm beginning to realize that curing lyme, might give me back ultimate health!  I'm sure it will be for you too! 

There's definitely a subset of AP that are little lymies, just like you…..welcome!
nancy

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