Anyone still have doubts LYME their real problem?

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springsjean
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   Posted 7/19/2010 1:34 PM (GMT -6)   
Although I have tested positive for lyme, erhlichosis and bartonella, I wonder if perhaps its not my immune system, adrenals, genetics, etc. that give me the symptoms of the illnesses rather than the illnesses themselves.  I wonder if I wasn't a worrywart, type A personality, etc. that make the illness worse or just plain give me the symptoms to begin with.  I just can't imagine that I can't beat this thing or at least get better results from meds and supplements.  I guess it's just me blaming me again for the disease instead of blaming the disease but it can get so hard to believe that in todays modern medicine I can feel this lousy and not get better taking 22 pills a day!  I struggle everyday with anger and acceptance and consider if perhaps just seeing a pyschiatrist would relieve me of the many problems but who the hell feels like starting with another doctor.  Anyone else ever have doubts?

vicparis
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Date Joined Jul 2009
Total Posts : 113
   Posted 7/19/2010 1:45 PM (GMT -6)   
I feel the same way:)
 
Victoria

nasalady
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   Posted 7/19/2010 1:57 PM (GMT -6)   
I guess I don't feel that way anymore. In the beginning I really couldn't believe that I REALLY had Lyme disease and multiple coinfections, but I sure do now! There are so many many symptoms and physical issues that can't be explained by anything else!

I know that I ALSO have multiple autoimmune diseases, although I am hoping that a few of them might turn out to be Lyme in disguise so they MIGHT go away if I can get the Lyme under control.

My situation is probably more complicated than most, but I think we all struggle with anger and acceptance at some point, springsjean. Seeing a shrink might help, but my rheumy already has me on Cymbalta and Lyrica for my fibro, so that probably helps me manage my depression a bit.

Good luck to you....I hope you find some answers, some sort of resolution to your doubts and depression issues soon!
Take care,
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


Traveler
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   Posted 7/19/2010 3:35 PM (GMT -6)   
After living with tick born infections as a constant in my life for the last 15 years, I have managed to cycle through those feelings several times. I really have no doubt that I had/have chronic infections, but I also know that I carry at least 1 virus that have not yet been eradicated from my body. I keep "getting lost" as to what is causing what, as so many of the symptoms are the same for both EBV & Lyme & company - not to mention any symptoms from Hashi's, or any other condition that I now have.

This is one of the many reasons I am soooo very grateful to have finally found a good acu doc. I saw a good one back in '04 out in Calif. (Hubby & I were out there for Hubby's work) & felt better than I had even in my teenage years, but the job ended & we had to move back home.

What I am hoping is that with the help of acupuncture, Traditional Chinese Medicine, & herbs/homeo, I can get all systems back up & running - and then, maybe I can make the trip to get tested & evaluated by a LLMD.

Like you Springsjean, I sure don't feel like starting with a new doc!!!
So, yea... I have LOTS of doubts.
-Live simply- Love generously- Care deeply- Speak kindly. May we all find peace along the journey to find healing.
Trav


springsjean
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   Posted 7/19/2010 5:36 PM (GMT -6)   
Thanks so much. Why it helps to know that others suffer as I do is beyond me but it does. I have thought of accupuncture and will leave my options open. I truly count my blessings that we are able to have health insurance and afford supplements etc. as I know not all of us are as lucky. I am determined but really wish I would hear more of us that eventually got better.

+Lyme
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Date Joined Apr 2009
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   Posted 7/19/2010 6:10 PM (GMT -6)   
Springjeans,

Well, for starters, the word on the street about my LLMD who is an ID Dr, is that his patients get well. So I feel very confident that I will. And if it takes abx, so be it. I can conceive of some time in the future where I might digress from this, but not at this point. Lyme's a freaking bacteria and I'm believing that augmentin will zap it! (you got me on a good day here, normally I'm much more negative....)

Admittedly, this is not appropriate for every sufferer.

As for your Lyme and your immune system, etc, ALL of that is, so far, unclear. NO ONE has these answers firm yet. Yes, I do believe that some people have genetic predispositions that somehow compromise their immune system in certain ways. I believe that is obvious.

It is possible that those who have chronic infections have an immune system already compromised in some way, and it is also evident that Lyme compromises the immune system. The jury is still out on which caused which, but I believe the sensibile opinion is that it's different for everybody.

Still, I wonder if there is any real documentation of someone who positively had Lyme (like the bull's eye, etc) whose immune system alone was able to conquer it? Entirely possible, I believe, but we just don't know about it. THEY aren't the ones going to the Drs or blogging, or having papers published about them.

I was not stressed at the time I contracted Lyme (my tick bite is known). However, I was about stressed to the max within a month of being bitten and it only worsened w/ a certain amount of time. Did Lyme (and plenty of Babs) cause my failures and unbearable anxiety at my new job (after I suffered the closing of a business, which I have never experienced)? Or did this stress leave me defenseless in fighting the Lyme?

I don't think we'll ever know the answer to this question. However, I now will always maintain that I had to quit the job that caused unbearable anxiety, because, unbeknownst to me, I had Lyme and Babs. Still, I don't know what difference it really makes.

If you are lucky enough to have a clear and positive diagnosis of Lyme, then you can begin moving forward, as long as you have a good, knowledgable Dr helping you.
 
OH -- and I am and always have been a worry wart. I remember my mother telling me, AT THE AGE OF 3, that I would have ulcers by the time I was 5.  Still, for many many years, I have enjoyed a very strong immune system (which is probably enhanced by supplements).  So, jury's still out on that one, too.
 
 Did I miss any points?


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/19/2010 6:13:41 PM (GMT-6)


springsjean
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Date Joined Mar 2009
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   Posted 7/19/2010 7:47 PM (GMT -6)   
LOL.  No I think you covered it all.  BUT I wonder are there those out there with lyme that never get horrific symptoms but perhaps maybe just headaches, or maybe the reverse, are a lot of people out there with just rheumatoid arthritis or migraines or anxiety actually have lyme but never diagnosed with lyme because they never get the other symptoms?  Now I probably totally confused everyone.

+Lyme
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Date Joined Apr 2009
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   Posted 7/19/2010 8:04 PM (GMT -6)   
I understand what you are saying and asking. Yes, I believe what you are saying may very well be true. There just aren't enough case studies and research to answer this, at this time.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 7/19/2010 8:24 PM (GMT -6)   
I continue to wonder when I got it. I first thought it was 5 years ago when i remember some kind of bite on my back (I am an avid gardener) and symptoms started shortly after but gradual. But then I remember a number of small black marks on my calf (which I thought must have been poison something or other) back in 2000 which I remember aggravating my hyperthyroidism and then night sweats and supposed start of "early menopause." HOWEVER, I continue to wonder because I suffered back pain as a child (unknown), numerous ear infections, severe abdominal pain resulting in exploratory surgery and removal of appendix, got really sick first three months of first pregnancy, hyperthyroidism with second pregnancy, swollen stiff neck when my mom got sick and died, etc. etc. Who knows - I guess I never will!

Willowrose
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Date Joined Oct 2009
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   Posted 7/19/2010 8:31 PM (GMT -6)   
Your post made me smile at how many times in the last 11 months since I was diagnosed with Lyme, babesia, and bartonella, that I have wondered if it wasn't all a mistake. I'm sick and getting sicker despite treatment, but still I don't want to believe these infections are the cause. Like you, I have adrenal & other medical problems, probably caused by Lyme, et., al., and these medical problems create a lot of my symptoms. Well, maybe, as you surmise, it's simply the problems and not Lyme after all. Pre diagnosis that's what my doctors said. But I remember how anxious I was for the years before my diagnosis to understand why all of these individual medical maladies were happening to me. At least with Lyme, I understand. And, though Lyme is difficult to test for, I have babesia RNA in my blood cells so there's no question on that diagnosis, and as I understand it, the bartonella tests were unquestionably conclusive as well. If I have those two, then why not Lyme? Makes sense, but I still don't want to think I have this because it's difficult to get rid of (is it even possible?), it's ridiculously controversial, and there are no clearly established treatments that are sure to work for everyone.

I have two friends with Lyme who see a well-known and respected LLMD and who are a year and two years ahead of me in treatment, and they're not better either. I totally agree with your desire to hear more about people who have gotten better. At this point, all I know of are people who are not better, who have struggled much longer than I with no end in sight. I've read the statistics, but where are those people? Are they still ok? Did they have multiple coinfections? Were they infected for years, maybe decades, before being diagnosed? This isn't like anything else I've had where I took antibiotics and both felt and got better. After 11 months on antibiotics, I'm not okay. To me, that's the scary thing.

And yes, I think there are plenty of people who have these infections who have no significant symptoms because their immune system handles it. I think I was one of those people for a long time. My symptoms didn't become pronounced until after my husband died. I believe stress took down my immune system and here I am. I also think there are plenty of people who have these infections and have symptoms, but are undiagnosed or misdiagnosed. Another group in which I can claim membership. For me there is not yet peace around this diagnosis. Before I found out, I hoped I had it because I really needed an answer and I thought it was not difficult to treat. After I did some research, I was hoping hard that one of the other possibilities (hormone imbalance, thyroid, etc.) was it. But really it wasn't my choice to make. Sigh.

Rose
I have Lyme; it doesn't have me.


springsjean
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Date Joined Mar 2009
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   Posted 7/19/2010 8:40 PM (GMT -6)   
I have had so many things, hormone imbalance diagnosed by gyno I LOVE as early meno, hyperthyroid (really brought on by pregnancy?), ovarian cysts, fibroids, appendix out, gallbladder out, ear infections (caused by cleft from birth?). Really just too many coincidences. I do like my LLMD and am going to approach this subject to her. Just hope i'm not still discussing it three years down the road with yet more ailments to my acclaim.

Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 7/19/2010 8:44 PM (GMT -6)   
At least, if you are still discussing it three years down the road, I hope you will not have more ailments on your list. At some point I keep expecting this thing to quit advancing, at the very least, and begin receding.

r
I have Lyme; it doesn't have me.


Willowrose
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Date Joined Oct 2009
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   Posted 7/20/2010 2:28 PM (GMT -6)   
Patti - I can sympathize. We have trouble getting a correct diagnosis because the symptoms mimic so many other things and/or the Lyme causes those other things producing the symptoms. When I am feeling awful, my mind spins with a whirlwind of imagined possibilities for all of my symptoms. When I began treatment I felt a little better knowing there was an explanation for what was wrong with me, but now, 11 months later, I'm not doing so well and I'm still getting new symptoms. Who wouldn't wonder what else could be wrong? Like you, I have numb spots on my skin; this is new in the last 3 weeks. Sometimes those spots tingle and throw out stinging pain. And, like you, my sleep pattern is all messed up. Your olfactory symptoms sound disturbing; did your LLMD say that was from Lyme? And the dizziness? My LLMD said that dizziness is not common for Lyme, but I have heard elsewhere that it is. My husband started with dizziness six months ago and it hasn't gone away. Now I worry that I have passed this on to him. My Lyme symptoms began with serious stomach problems. That's subsided some, but, still, I rarely get hungry and have to remind myself to eat because I really don't care if I eat or not. When you consider how far from normal we feel, it's not surprising that we'd doubt the Lyme/coinfection diagnosis. How could it do so much? Sometimes I think I begin to believe the popular perspective that Lyme isn't a big deal....and a little voice whispers "what if they're right." What if we're caught up in some grand misunderstanding and they are right? Crazy thinking.

I hope you can get back into treatment, and I'm sorry to hear about your doctor. I've been lucky so far with insurance, but who knows about tomorrow?

Rose
I have Lyme; it doesn't have me.


Willowrose
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Date Joined Oct 2009
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   Posted 7/20/2010 6:31 PM (GMT -6)   
Patti - What an ordeal! I am glad you've probably only had this since 2003. Your doctor was partially right about the possible spider bite since ticks are in the arachnid family but it sounds as if he did nothing to help you. You've had some severe symptoms. I hope your digestive system is better now. I can't remember which thread has the comment about babesia and anorexia. One wouldn't think a "bug" could cause anorexia, but I do not deny that anorexia has been an on and off problem for me for years. I didn't understand what anorexia was until I saw a TV documentary several years ago and then the light went on - hey, that's how I am! So, are you saying your inability to eat stemmed from an intestinal blockage? Was that caused by Lyme (and/or coinfections)?

Rose
I have Lyme; it doesn't have me.


cmatter6
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Date Joined Jun 2010
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   Posted 7/20/2010 7:55 PM (GMT -6)   
I'm beginning to wonder myself. My 2 1/2 year old daughter was bit by a deer tick and developed the famous bulls eye rash. After being on antibiotics for 25 days, she still tested postive on her Lyme AB Screen test. Her score was above 5, which I have found out is really high. What frustrates me most is that the doctors insist that she is okay and has been cured because of being treated with the antibiotics. She hasn't developed swollen joints or hasn't been fatigued, but it's hard to judge certain symptoms cause she is 2. Two year olds are going to go through phases of being moody or be extra tired due to a growth spurt. And it's kind of hard to tell if she has a severe headache cause they can't exactly tell you at that age. She has had fevers in the last month. I'm just wondering if I'm loosing my mind or continue on to see a specialist to make sure. My gut and mother hen instinct is telling me to push on further to find a really good pediatric lyme specialist. I don't care how far I have to drive to make sure that my little girl is going to be okay later on down the road. Also, I'm considering getting tested myself and the family cause I myself have been bit by a deer tick around the same time my daughter has and the tick mark is still there and irritated. Any thoughts or recommendations would be sooo helpful.
Many thanks!

allieann
Regular Member


Date Joined May 2010
Total Posts : 116
   Posted 7/21/2010 10:49 AM (GMT -6)   
Have 2 sons with lyme and co-infections.  If another member of the family gets a tick bite I will go directly to 6 weeks on doxyclycline and if that doesn't do it I would by-pass all the other drugs, suppliments and put them on a coil machine. I have spent a small fortune on drugs and suppliments etc. and they only drive the spirochete into a cyst form to come out and become active after these treatments are stopped. Just my opinion and hope this helps someone.

lylaso
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Date Joined Jan 2010
Total Posts : 57
   Posted 7/21/2010 11:36 AM (GMT -6)   
My LLMD (who is also a family practitioner) said he hates the cases where someone walks in complaining of headache only to test positive for lyme. The atypical cases.

I am one of those that don't have horrific symptoms in the sense that I can physically do everything I want to. I run two miles everyday and chase after my two little boys. My main symptoms are headache, head pressure and anxiety. No joint pain, numbness, fatigue (now) or paralysis.

There are days I convince myself it's something else...maybe all ANXIETY. I just have never heard of having anxiety when you wake up and aren't thinking of anything.

Those darn tests are also killing me. My LLMD didn't think I had lyme based on my symptoms)...until the test came back. Negative by CDC standards but I was positive enough for him.

Until we have better science I think it's best to be a healthy skeptic.

I envy those that had an EM rash...at least they know for sure that lyme is at least part of the problem!

Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 7/21/2010 1:27 PM (GMT -6)   
lylaso, I can sure see how you would have doubts. At least in my case I have lots of Lyme symptoms, but it wasn't always that way. I never got a rash so I am unsure when I got this, but I can trace back through symptoms to a time when mine were like yours: chronic low-grade headache and pressure, and unexplained anxiety. The anxiety eventually morphed into anxiety attacks that came on suddenly and in all sorts of situations during which one would not reasonably have anxiety. I think it is amazing that anyone thought to test you for Lyme. That didn't happen for me until I was very sick and I insisted on testing, decades after the symptoms mentioned above. I am wondering, are you getting treatment for Lyme based on the LLMD's test results?

Rose
I have Lyme; it doesn't have me.


lylaso
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 7/22/2010 12:15 PM (GMT -6)   
Rose,
Thanks for the reply. I started treatment 6 months ago. I am currently being treated for bartonella. I went through doxy/minocycyline and biaxin for lyme. Now I am on zithromax and rifampcin because LLMD feels that my symptoms are a result of bartonella.

When I went to see my GP (non LLMD) when I had fatigue and dizziness his PA suggested lyme and tested me via Elisa. Of course that came back negative, but if it weren't for her I would have never researched the possibility of lyme. I thought she was crazy...I've never seen a tick in my life. Then I found out a very good LLMD practices right down the road from me and became aware how endemic it is here in Maryland.

My LLMD said I had an acute case and put me on doxy...but here I am 6 months later with all the same symptoms (minus fatigue) and a couple new ones.
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