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Hello to all,

I am new to this forum.

my name is Luka and I am 28 years old men from Slovenija (EU)

Firstly I am very sorry for all of you who are fighting this miserable, unexplained... diseass.

I also am fighting one of such diseass and know how hard it could be and actually how hard it is.

I am ill for 5,5 years now, and lyme disease was also one of many posibilities during the proccess. But I do not have lyme disease.

Honestly this post is intended for CHRIS0007 (of course it may also be interesting for others)

I studied apsolutely tons of scientific medical papers and books. The doctors from all around europe and even USA are now calling me ''unbeliveable patient'' and honestly, are thinking of giving me a honorary doctorate of medical science. They all agree that they would never be able to diagnose my disease without my knowledge, altough the same doctors were trying to persuade me for 3 long years that it is all in my head.

Why I choose a title'' decreased sweating with lyme disease

Well Chris becouse I know this is one of your symptoms that you have no answer to it (I know the symptom can be answered by different medical conditions especialy hypothiroidism - I know you studied a lot but realised like many times this is not the condition you are fighting with) . I pursued your story for quite a long time. I would like to exspres just symptoms that you can not find in other people on any forum, and you feel are somehow different from any people you have been talking to. 1) decreased sweating during sport activities, 2) skin atrophy (ACA). I know there are many other symptoms you have but I will discribe them next time (becouse they are somehow similar to symptoms other people describe them), I mentioned two symptoms couse I know you were probably unable to find other people to talk about them.

If i am correct let me know

Our stories are absolutelly very similar

I hope you understand, that I might not be able to help you, but I am quite certain that I can help in a way that you will get you doctors on your side couse you certainly need them.

I know it is hard with such diseases, but people enyoy your lives as good as possible.

With my best wishes to all

Luka from Slovenija
Hi Jodie

I am really sorry for your really bad suffering.

It appears to me that you really have lyme disease, but what i am trying to explain in previous post is that in my opinion the majority of people do not have lyme. why.. I will be very simplistic. people infected with lyme disease really need to have symptoms of immune reaction. you need to understand that any people that has the invasion of foreign pathogen (I am talking about pathologic pathogen) has the reaction of immune system. It is not important here, wich antibodies form in response to (borelia for example) becouse we maybe do not know for this antibodies yet and consequently our test are negative, but important is that attack of these antibodies results in inflammation. Inflammation is something we can measure in our blood. The person infected with systemic bacterial infection would therefore neccesaryily produce inflammation. And you need to understand that chronic lyme disease is chronic inflammatory disease and in chronic inflammation state there is increased production of cytokines, neuropeptides.... These molecules produces changes that can be measured. And yes I know about cysts form of lyme bacteria. According to chronic lyme disease theories this is form that bacteria uses to hide away from immune system (as you know). and then when a person has supposedly weakened immune system for any reason bacteria transform and strike. It can sound logical but it is just not the case. Or immune system react and produce inflammation or not and is so compromised that it cannot react (in this way no one can live becouse anyone would die from multiple infection that we are exposed to every day)

The most common symptom of this reaction is fever, fatigue, muscle pains, flu like symptoms.... And this need to be first symptoms in majority od people of systemic bacterial infection of any kind including lyme disease.

In majority of people of unexplained diseases doctors are unable to find anythink wrong in that direction. This dont mean that those people do not have disease and real fatigue, muscle pains, IBS............., But it means that it is unlikely that any bacterial infection is to blame.

-why I feel I dont have lyme

First of all, Bowen lab has no negative examples, while at the Igenex my whole family were positive even though they are all absolutely healthy. If you dont belive me you can try it to. Especially band p41, there is so much talking about, were positive in all including me.

The majority of people that are trully infected with lyme disease are cured with antibiotics. Additionaly all has signs of inflammation wich can be measured.

Yes I saw the ''under our skin'' and if you asked me 3 years ago my opinion would be: oh my god, how many people diagnosed with Fibromyalgia, CFS, ADD, Leaky gut, MS, ALS, hypothyroidism...........actually has lyme disease? But today I think it is just not the case.

Therefore I understand the doctors when keep telling you it is not lyme. If you had the knowledge of how immune system work (in case of bacterial infections) with releasing B cells, T-cells, degranulation of mast cells releasing histamine........ you would realize that majority has not bacterial infection.
I know the suffering is additionaly strenghten if the person has no explanation.

Very important thing is chronology of symptoms development. With any kind of disease we would eventually suffer from symptoms that are clasic for lyme disease but it still do not mean that we have lyme disease.

I have all the symptoms of lyme disease but chronologicaly the disease is totaly different and also measured changes (damage) is tottaly different.

If you are interested in my disease and my symptoms let me know.

I know you can show me contradictionary information probably for everythink I mentioned but it is on each individual what he belives.

Best wishes to all

Luka
Luca,

Thanks again for lending your knowledge to help me out! :D This is going to be a long post, so I apologize!

[QUOTE=luka540;3751439]
do you really have any abdominal somatic muscles weakness that is measured with EMG or is just discomfort and stiffness and subjective felling of weakness? This is very very important.
[/QUOTE]

I did have an EMG test conducted. The doctor, one considered very knowledgeable in the field of neurology (as I kept finding out as I saw other doctors...they would be like "wow, you saw doctor "X") told me there was no real way to measure the nerves in my abdominal muscles through the EMG. He did say that if there was something majorly wrong with that abdominal area that it would show by running a portion of the EMG test across my lower back...which he did. I came up negative for this test. I can tell you with 100% certainty that I had something else other then general stiffness and weakness in this area. When it first occurred, I had issues holding my body up straight when seated because of the weakness. I would also share that while I still have this problem in my abdominal muscle, over the last 16 months, the condition has partially reversed and not gotten worse. However, if I were to exercise that area, which I have done in the recent past, I can end up "hurting" it again.

Here are how my symptoms progressed (for comparison):

1. Chronic Constipation - Nothing touches this...NOTHING! And I have been on a special/very restrictive diet for 16 months just to get by every day.
2. Abdominal bloating
3. An injury to my left lower abdominal muscle to which I cannot tie a "injury event."
4. I lost 50 pounds in 45 days. I have always carried a lot of water weight on my frame. Being a person who exercised almost my entire life, I would notice fluctuations in 5-10 pounds on any given day. I share this because I am 95% certain most of this weight loss was due to water weight loss.
4. Nerve pain in my feet
5. Nerve pain that went up my legs
6. Full body nerve pain
(I should mention that all nerve pain feels/felt localized to the skin)
7. Joints started to crack all the time. (Never before)
8. Muscle weakness set in. I am still able to function as a regular person, thanks to a lifetime of weightlifting, but I have gone from being able to bench press 400 pounds to barely bench pressing 135 (as an example.) I think that if I were a normal person who didn't work out his entire life, I would have trouble walking and doing normal things.
9. Extreme muscle stiffness set in. TMJ as well.
10. Somewhere along the way I noticed the heavy urination and not sweating anymore. I have been tested for many medical conditions pertaining to this and all have been negative. I can tell you that I lose about a liter more then I can take in daily. If you add that to the 50 pounds of weight loss, that is mind blowing.
11. Then a long list of smaller symptoms just came on and wax and wane every day.

So does this sound like what happened to you Luca? I have exercised heavily my entire life, so you got that part right, but if there is one area that I can honestly say got little exercise, it was my abdominal area. That being said, I can tell you that my pevlic area was exercised heavily!

I definitely understand your explanation of ACA and now it makes sense that it doesn't apply to me. I never had an inflammation event on the skin and indeed most of my body is effected by this skin event. Thank you for the clarification!

Some things that don't fit the puzzle though are:

1. Probiotics and antibiotics extremely worsen my constipation, as does sugar intake. If my issues are vasodiolative/vasocontrictive in nature, why would these change that? I know insulin affects the osmotic exchange of fluids between the serum and the cells, but this still wouldn't explain the effects of the probiotics/antibiotics.

2. In a nutshell, I absolutely feel like my muscles and skin are not hydrated properly. Do you feel this way as well. I don't have dry skin on the surface, but it does feel rubbery. I do agree that it has become thinner and I cut and bruise more easily.

3. To what degree did IGenex say you were infected with Lyme?

4. You mentioned that this autoimmune disorder related. Just as other conditions have their appropriate markers, shouldn't we test positive for certain ANA tests? I came up negative in this area with the exception of a mildly elevated Histone level. Time and time again, all autoimmune tests keep coming back clean.

5. What sero-abnormalities have you had since this condition started for you. I know that my Cholesterol has jumped up to just above the high range, I have a patterned decreasing WBC count over the last year but still in range, I have had an elevated IGF-1 marker, and my Vitamin D and B-12 levels are all over the map, but in range. Why I find this weird is they can go from one end of the range to the other in less than 3 days.

I apologize for all the questions and so much information. I am thrilled to speak with you about this and I absolutely believe your information has merit to my condition. I briefly read up on endothelial dysfunction this morning and I can absolutely see the application to my conditions. I am going to continue my work up on the lyme angle as I had a small amount of relief from some symptoms when I started antibiotics, but your explanations and information definitely have merit for me and my symptoms. I guess after a few of the tests that you recommend, we'll know even more.

So what is the best type of doctor to go see about this, in your opinion?

Thanks again Luca!
Well,

Without getting too depressing, I'm not sure it is lyme. I'm not even sure it is infectious in nature. I tested postive for other things as well, but after reading other people's post on this and another major board for lyme these other infection seem common (HHV-6 as an example.) Who knows if we had these things before we got sick. Honestly, if I had the money, I bet I could test my entire extended family at Igenex and they would all come back with some bands and possibly infected.

What I'm stuck on is this range that I'm stuck in. By that I mean I feel terrible all the time, but have a narrow range of how I feel:

Good day terrible -- generally terrible -- bad day terrible

That is my range. For almost 3 years I didn't get worse, I didn't get better. If this was truely infectious in nature, why don't I just keep getting steadily worse? But I do know something happened to me to cause my health to drop fast, like in 2 months and then recover. Now I have problems taking supplements or medicine. I started to think that it was all in my mind, but then I noticed when I took supplements that I didn't even think twice about, they could give me a bad day of symptoms. There are other supplements that don't do anything to me, so I know it can't be in my mind.

Honestly, I am starting to think that I have a bad case of leaky gut. It is the only thing that can explain my symptoms. I also think a lot of people here suffer more from poor biotoxin elimination than just lyme.





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