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thanks guys.. wonder what my doctor will say when i ask for a "western blot" test.. since im in sweden.. but at least i know that "the Western Blot should have a list of numerical bands with a rating of positive, negative or equivocal after each band." however i have a feeling the doctor will just stare at me with a confused look in her face when i tell her that.. for some reason i dont have much faith in doctors..

- the ranting begins -
i have talked to a lot of doctors and most of them say "you must be having a depression" well no sh-t doc! thanks alot, heres your money! how the hell would you feel if you constantly tired, nothing feels real and you don't even remember who you are? i was on anti depression medecine for two months when i was 17 and all that did was make my hands shake.. wonderful.. my psychologist also thinks i am depressed, he also thinks i might feel dizzy and have blurry vision because i consentrate on it so much.. thanks doc, that helps.

today i talked to my mother on the phone and told her my test resulst were negative and she seemed surprised i wasn't happy with the results. well since i've been like this for 7 years i would like to know whats wrong with me. i then tried to rant about doctors hoping to get some sympathy wich didn't work at all she proceeded to dismiss every bad thing i had to say about doctors wich kinda pissed me off..

and she said the same thing i have heard all my life. "you need to exercise and not just watch tv" and "why don't you go for a walk and get some fresh air?" i then replied i do walk if i have to and that it doesn't make any difference .. i am CONSTANTLY tired, what the hell is it you don't understand? she then said "well you know fresh air and exercise can really help" i then hung up and went out for a smoke.. checked my answering machine later: "i wasn't trying to be mean i just think you should get some fresh air and exer.." i deleted the message at that point..

when i was 12 and first had these symptoms i told my parents how i felt and described it as good as i could, during that time my parents were too caught up in their own dissagreements and going to wedding counselors (behind me and my sisters back) to really have time to care about my condition so i just didnt mention it again.. then when it came back at 16 i figured it would go away again but after 1 year and still no change i went to the doctor.. all test were normal and i never got diagnosed, screw it i thought.. maybe it will go away eventually. after a few years i just got used to it and forgot how it felt before.. i can't help but feel if somebody had cared either when i was 12 or 17 my life would have been so much better and i wouldn't be so messed up emotionally.. i blame my parents the most for allways saying "just go out and get some fresh air"

my parents aren't the only ones who has told me this, i have heard this from a bunch of people who i have told how i feel.. not to mention that every person i have ever met has told me "damn, you look tired" and "how come your so damn tired all the time?" every time i just get quiet and keep my anger nested deep inside my allready rage-filled mind..
- end of ranting -

you said i didn't have to worry about ranting.. :rolleyes:
- edit -
i can't seem to find the thread "CIARA LYME REOCCUR??"
[QUOTE=sleepygonzales]

[B]wonder what my doctor will say when i ask for a "western blot" test.. since im in sweden.. [/B]

[B]you said i didn't have to worry about ranting..[/B] :rolleyes:


[B]i can't seem to find the thread "CIARA LYME REOCCUR??[/B] "[/QUOTE]

Morning sleepyG,

Several things... First of all, rant on all you want. Now we know more of your story. Many relate to your last post about finding all the symptom lists and actually feeling relief that you might actually have LD. Especially after bouncing from doc to doc who don't have the descency to atleast say, 'I don't know what is wrong', rather than say, 'it's in your head'. :o

As for the Western Blot lab testing, I believe it is a world wide testing method for many things, not just lyme disease. You just happen to want a doc to run Western Blots for lyme disease. One thing you could do is print out the info on the Western Blot testing that Igenex Labs do. Having that in hand, would be better communication. Igenex Labs in Palo Alto, California.

And as for the Ciara lyme reoccur thread... I didn't really title it correctly.
Here is the part that I thought was interesting:
[COLOR=Blue]I had lyme disease - only symptom was knee and leg swelling. The disease never showed up in in my blood - only after three surgeries where the last one they took fluid and it came up positive.

I was on iv antibiotics for two months then two more months of oral til last December. I was doing great - pain was gone and only left with what they said was some lyme arthritis which I could deal with. Then suddenly this week my leg swelled so severly and the pain was intolerable. There is a bakers cyst on back of my leg that has filled with fluid almost all way down my leg. Doctor tried to drain and take some fluid but could barely get any but thought had enough to test for lyme.[/COLOR]

Sleepy, It is so frustrating to be sick and without a diagnosis, a competent doctor. I just feel and even deeper burden for you as you are in another country than most of here and I know 'we' wish we could hook you up with local support, doctors, etc. But hang on with us. I think you can get the treatment you need with perseverance. Just be selective with who you spend your time and money on. See what you can find out on the phone. Print of info from Lyme foundations that is clear and to the point (not too wordy) and take it with you.

Best of luck and my prayers are going out for you, cj
[QUOTE=cjFTWORTH]Morning sleepyG,

Several things... First of all, rant on all you want. Now we know more of your story. Many relate to your last post about finding all the symptom lists and actually feeling relief that you might actually have LD. Especially after bouncing from doc to doc who don't have the descency to atleast say, 'I don't know what is wrong', rather than say, 'it's in your head'. :o

As for the Western Blot lab testing, I believe it is a world wide testing method for many things, not just lyme disease. You just happen to want a doc to run Western Blots for lyme disease. One thing you could do is print out the info on the Western Blot testing that Igenex Labs do. Having that in hand, would be better communication. Igenex Labs in Palo Alto, California.

And as for the Ciara lyme reoccur thread... I didn't really title it correctly.
Here is the part that I thought was interesting:
[COLOR=Blue]I had lyme disease - only symptom was knee and leg swelling. The disease never showed up in in my blood - only after three surgeries where the last one they took fluid and it came up positive.

I was on iv antibiotics for two months then two more months of oral til last December. I was doing great - pain was gone and only left with what they said was some lyme arthritis which I could deal with. Then suddenly this week my leg swelled so severly and the pain was intolerable. There is a bakers cyst on back of my leg that has filled with fluid almost all way down my leg. Doctor tried to drain and take some fluid but could barely get any but thought had enough to test for lyme.[/COLOR]

Sleepy, It is so frustrating to be sick and without a diagnosis, a competent doctor. I just feel and even deeper burden for you as you are in another country than most of here and I know 'we' wish we could hook you up with local support, doctors, etc. But hang on with us. I think you can get the treatment you need with perseverance. Just be selective with who you spend your time and money on. See what you can find out on the phone. Print of info from Lyme foundations that is clear and to the point (not too wordy) and take it with you.

Best of luck and my prayers are going out for you, cj[/QUOTE]

the thought of having to get surgeries isn't that great.. but since i am sure i have lyme disease i guess i might be forced to at some point, cos they can't just give me a treatment based on what i think..
Its only fair to tell you that I'm a Pharmacist and, well, I know that what I'm about to tell you will be met with a great deal of controversy on these boards, but, I asked those questions are for two reasons:

1) To rule out Lyme Disease
2) To rule out Major Depressive Disorder.

You see, many family doctors would look at your symptoms and say, "Your suffering from depression, anxiety, panic attacks...take this pill (Zoloft or Xanax) and see a Cognitive Behavioral Therapist (Psychiatrist) and you'll be fine." Many self proclaimed Lyme Disease Specialist would say, “You have Chronic Lyme Disease…this will take months and maybe years of antibiotics to cure!” However, I am offering you a very different but very sincere opinion. When I asked you about your symptoms and if you feel flu-like much of the time ESPECIALLY after exertion, stressful events, or exercise, this was to pinpoint a very important symptom known as "post-exertional malaise". Basically this term means that exertion makes you ill. Unfortunately, and this is the important thing here, there is only one condition where this symptom is present in every case...It is the hallmark symptom of Chronic Fatigue Syndrome.

Chronic Fatigue Syndrome, among other things, is marked by physical exhaustion not relieved by rest, sore throats, feeling feverish and ill most of the time, brain fog, depression, anxiety, panic attacks, inability to handle stress, irritability, mood swings, sleep disturbances, and post-exertional malaise. These symptoms sound like it could be almost anything so all other possibilities have to be rule out of course. However, post-exertional malaise is the symptom above all symptoms where an effective Chronic Fatigue Syndrome diagnosis can be made. I myself suffer greatly from this...I used to be very active in the gym and at work but can no longer handle either one of them. The fatigue and sick feelings I experience after stress and exertions are so debilitating that I can't function at 1/3 the level I used to. The symptoms worsen tremendously over the winter months in many people as they find as soon as autumn hits, they begin a downward spiral until spring time and warm weather finally arrive and provide some relief. This happens to me as well…I can remain somewhat active in the summer but am down and out all winter.

When I first became ill in this way, I was discovered to have a positive ELISA/Western Blot Lyme disease test. My doctors and I figured “ok, I have Lyme Disease...A few months on antibiotics and I'll be ok.” Well, as it turns out, 3 months of antibiotics did absolutely nothing for me. At this point, my doctors sat with me and told me honestly that since the treatments did nothing for me that my condition is more serious than they had originally thought. Since they could rule out Major Depression, Lupus, Sleep Apnea, MS, Fifth Disease, HIV and just about every other illness known to man, the only option for me was a Chronic Fatigue Syndrome diagnosis. Unfortunately, nobody knows for sure what Chronic Fatigue Syndrome actually is, what causes it, or how to cure it.

Now, the problem is several people will tell you, "Hey, there is no such thing as Chronic Fatigue Syndrome, you have Chronic Lyme Disease and need to be on antibiotics for a Gazillion years and maybe then you'll have a chance at a normal life." Ok, fair is fair...nobody knows for sure what causes Chronic Fatigue Syndrome so why not believe that Lyme Disease is responsible for all of this? Why not just use the antibiotics for months on end? Why not believe that there is a Lyme Disease conspiracy going on and that medical science is way behind on this? Why not see a so-called Lyme Disease Specialist that is supposed to know everything and believe Infectious Disease Specialists and the CDC are still in the darkages? Well, that's fine for some people, but I have to disagree.

The reason I disagree is because I know from my own education and research that it is impossible for an infection of this type to do this much damage on its own AND there is no way that it could survive the onslaught of antibiotics most people receive when they are diagnosed and treated. The bacteria itself does nothing really on its own to harm your body; it just sits there and does nothing! It literally just invades your cells and just lies there! So what happened to me? Why am I still so sick? Well, it’s when your immune system over reacts and attacks the bacteria that problems and the all too common symptoms begin to arise. When the immune system attacks, the damage left behind can be serious and take years to heal. Ridding the infection with antibiotics, unfortunately, will NOT reverse this condition. The infection will be long gone, but the damage has been done.

The current theories on Lyme Disease and how it is related to Chronic Fatigue Syndrome are this...it is VERY possible that Lyme Disease is a triggering factor in causing Chronic Fatigue Syndrome due to damage that may have been inflicted on the immune system among other things. In certain people, for whatever reason, maybe its genetics, the body simply may not have been able to cope with the onslaught and the immune system gets stuck in a high alert mode which makes you feel flu-like, tired, achy, and weak all the time. Its fighting a never ending battle against something that isn't even there anymore! In fact, it only serves to cause ever increasing damage and futher deplete your bodies vital resources. This condition becomes extremely debilitating over time and often continues to worsen long before it ever, if ever, gets better.

Remember though, I’m in no way implying that every one that supposedly has Chronic Lyme Disease really has Chronic Fatigue Syndrome or vice versa. Medical science has yet to uncover the tremendous complexities of either of these illnesses so the jury is still out. However, if several months of antibiotic therapy have failed and post-exertional malaise continues to be a major symptom for you, I would seriously look into a Chronic Fatigue Syndrome diagnosis and have that treated accordingly. Read “From Fatigued To Fantastic” by Dr. Jacob Teitelbaum. He is one of the foremost authorities on the subject and his book goes into great detail about this condition.

Now, you can do either one of two things with the info that I have given you…You can say, “I don’t believe a damn thing you just said, I’m going to a Lyme Disease Specialist and will stay on antibiotics for however long it takes no matter what the cost” OR you can do some of your own research into Chronic Fatigue Syndrome and consult a physician about what I have presented to you today. The choice is ultimately yours, but remember...a well-informed and educated patient has a greater ability to take control of their health and the decisions that have to be made.

I’m entertaining all comments and questions on this subject…please feel free.
Morning all,
Man, I just came back from a weekend of camping and trying to catch up on just this thread alone is :confused: . Good stuff though - just much to absorb, especially at one sitting. So I'll munch on it. But I'm getting the jest of it.

Lamotta,

Based on what you are sharing about the lyme bacteria itself just invading the cells and lying dormant, the immune system attacking them and doing the real damage (if I grasped this correctly), I want to run something by you for feedback.

I think my lyme goes back about 5 years but that overall, my body handled it. I've had an ongoing rash this entire time and in the last year, a dermatologist put me on a topical steroid gel that was a level 3 of the 4 potency levels. Pretty strong stuff from what I gathered. After using it for 9 months or so, sometimes more faithfully than others, and still having the rash, I quit using the gel.

Within a month of quitting, I began this current battle with my body - physical symptoms popping up quicker than I could get the last one addressed and the strangest (different than my norm) depression bouts, dreams, neuro problems, (vision, hearing, etc.). I finally started pursuing a diagnosis myself as docs were quickly giving me the same song and dance they give everyone else who complains of a myriad of seemingly unrelated physical and/or mental symptoms.

Diagnosed with Lyme in January with positive western blots.

What role could using long term stronger topical steroid gels have played in my health/lyme manifestation/ability to now fight it/ or anything else that this birings up in your mind after reading it? I was off and on lower potency creams during the last 2 years as well for same rash and did some med-dose prednisones for poison ivy a few times as well.

Is there a connection to my initial lyme onset and symptoms (rash of some kind, swollen gland, flu, ) and then the following several years of no severe symptoms to: taking the creams/gels/dosepaks off and on?

If you can't follow this, please ask for clarificaton. Sometimes I think I'm communicating clearly and go back and re-read later and it's mush.

Thanks for your personal/professional opinion. And anyone else's for that matter. I've always been puzzled why I was 'hit' this last fall...

cj
I appreciate your replies. I was tested for all co-infections and on 2 occasions and they all came up negative. The thing that turns me off from seeing a Lyme Disease Specialists is that I truly don't see any benefit from continued antibiotic therapy in my case. The honest to god truth is I actually felt better before I ever tried them!

Here's what happened...I was still somewhat functional for a while when I initially became ill. I didn't feel great but I was still up and around a lot and the post-exertional malaise, anxiety, depression, and brain fog was there from the beginning but still very manageble. When I discovered I had a positive Lyme test in January of 2004, I was immediately put on Rocephin IV for 6 weeks. At this time I figured I would try it but I didn't like the idea much because I was still lifting weights and running at the time. I knew that once that picc line was put in place I would no longer be able to do those things for awhile, but I figured my long-term health was much more important so I went ahead and did it.

The weeks went by and I noticed that not only was I not improving any but I was losing my conditioning really quick. By the time the IV line was pulled, I still hadn't noticed a thing so I urged my doctor to continue therapy with Doxycycline. I took the Doxycycline for another 6 weeks and that stupid pill made me so brain fogged and tired it was ridiculous (we are not talking a herx here...this was an adverse reaction that I had to put up with for 6 weeks straight). By the end of it all, I still didn't notice a thing...12 weeks of antibiotics and still no improvements. I was so weak and out of shape it made me sick to look in the mirror!

Within the next couple weeks it warmed up considerably and I started feeling better because of it. Thank god, at least the warm weather was helping me! Pretty much all spring and summer I felt ok....not great, but much better than I had all winter and was able to resume some exercise again thankfully and regain some of my previous conditioning. It wasn't until I started those damn allergy shots that things took a turn for the worse again. If I hadn't done those, I'm convinced I'd be in much better shape today. Since then my symptoms have increased in severity and have gained 15 lbs of fat in the matter of weeks (I have stretch marks to prove it!) and still haven't been able to lose it.

Well, the summer ended, it got very cold again in late October and guess what? Right back to where I was again, only this time my post-exertional malaise, panic attacks, and depression are worse than ever! To add to all that, there isn't a single pill I can tolerate to treat any of those symptoms!

Betterdaysforme, if you say I have a sense of helplessness in my post, thats only because nothing has helped! We all feel this way don't we? No offense, but I would rather explore further options rather than attempt to continue a therapy that did me no good whatsoever if not make things worse for me. Oh yeah, forgot to mention that the antibiotic therapy also worsened my psoriasis which it has been known to do...





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