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    Old 10-02-2008, 04:56 AM   #1
    luka540
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    decreased sweating with lyme disease

    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

     
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    Old 10-02-2008, 06:32 AM   #2
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    Re: decreased sweating with lyme disease

    Hi Luka! Welcome to the board!

    I think that with anything that a person is going through they can NOT solely rely on doctors to figure it out. Especially when majority of them only have 10 to 15 min. with each patient.

    I like you, have had to keep fighting to get the "correct: diagnoises and treatment. But it took me longer than 5 years. ...ugh....

    So do you feel you have lyme or do you feel you have something else?

    Hope what ever you have you have found the proper protocol for it and see light in the tunnel.

    Take Care,

    Jodie

     
    Old 10-02-2008, 12:05 PM   #3
    luka540
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    Re: decreased sweating with lyme disease

    Quote:
    Originally Posted by jojo View Post
    Hi Luka! Welcome to the board!

    I think that with anything that a person is going through they can NOT solely rely on doctors to figure it out. Especially when majority of them only have 10 to 15 min. with each patient.

    I like you, have had to keep fighting to get the "correct: diagnoises and treatment. But it took me longer than 5 years. ...ugh....

    So do you feel you have lyme or do you feel you have something else?

    Hope what ever you have you have found the proper protocol for it and see light in the tunnel.

    Take Care,

    Jodie
    Hi Jodie

    I am sorry for your suffering

    I need to tell you that I will be very straight and very honest (I apologise - but it is the best belive me). I studied lyme disease very extensively and in my opinion majority of people on lyme forums do not have lyme disease (I know they dont like to hear that - I was there also - sorry, please dont understand me wrong). This absolutely dont mean they do not have a conditions wich need to be treated. And I know and belive these are real medical and not psychological condition. I know psychological condition are SECONDARY (for all doctors)

    I dont have lyme disease even though I have positive tests from Igenex and Bowen.

    I have the disease which is driven by disturbed neurovascular reflexes and is autoimmune in nature. Consequent damage is primarily endothelial. The doctors have no name for this but it appear that I am developing mixed connective tissue disease. There are many medical tests that have been done on me and are normal, but when you start to understand things better you are able to suggest doctors more specific tests that in my case confirmed my hypothesis. (one of such test is for example skin biopsy or deep mucosal biopsy to asses nerve fibre density, also microneurography and small bowel manometry, andtibodies to neuron specific enolase.......)

    Actually I have no treatment right now but we are very near that we will be able to make me better. (I have no doubt in that and also all anxiety from unexplained symptoms disapired becouse they are not unexplainable any more)

    I hope all of you will get better,

    Best wishes

    Luka

     
    Old 10-02-2008, 02:11 PM   #4
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    Re: decreased sweating with lyme disease

    Hi Luka,

    Oh you have not offended me....I know that everyone has different opinions. I also know from my research and learning about different bacteria's and virus's that many of them come close to having the same symptoms.

    The doctor that I am seeing for the last 5-6 years he is treating me for the Chlamydia Pnumoniae bacteria. If someone didn't know the differnce you would think you have lyme. The symptoms are so close.

    I also have bartonella, babesia, also Epstein Barr and Cytomeglovirus. And possibly what ever else I wasn't tested for.

    If not treated they all can cause plenty of damage.

    I NEVER got a positive through Igenex. I had bands pulled up on Western Blots from different doctors but was told I was negative.

    K reason I know I have Lyme....
    I have been bitten numberous times in my life. Early 80's started having problems....test..negative...1987 10 ticks on my hands in the morning from crawling off my dog. STilll feeling like poop doctor's say nothing is wrong...

    1992 3 ticks head embedded from one of them, had to go to ER to have head dug out...Sick within 3 days, fevers, nightmares, sweats...back swollen....So I know I have Lyme.

    I am truly wondering why you feel you had false positives for Lyme. Why do you feel you don't have lyme?

    I am wondering have you seen the trailer for Under our Skin? Many people that were told they don't have lyme are truly suffering. I have spent over 20 years ill. Because doctors wanted to tell me I had ...M.S. delusional, a.d.d., borderline mental retardation, Gullians disease, that I needed surgery on my neck and have it fused. and I could go on and on. I feel more worried for people that have this than people that are supposedly getting false positives. Anyway....

    Jodie

     
    Old 10-03-2008, 02:54 AM   #5
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    Re: decreased sweating with lyme disease

    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

    Last edited by luka540; 10-03-2008 at 03:41 AM.

     
    Old 10-04-2008, 06:54 AM   #6
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    Re: decreased sweating with lyme disease

    Hey Luka!

    Thank you so much for reaching out to me with your information! I'm very curious to hear what you have to share. I'd really like to hear your story and what you might think we share in common in the way of symptoms.


    Chris L

     
    Old 10-05-2008, 02:17 AM   #7
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    Re: decreased sweating with lyme disease

    Hi Chris

    I am glad that you respond.

    As you allready saw my english is not perfect, but I'll try to be as correct as possible (thank you for understanding).

    I am quite excited that I have opportunity to talk to someone that I think has very very similar if not identical disease than I. To date I was unable to find any person on any forum that I feel has the disease I am fighting with. Your case is the first that I truly belive is the same as mine. On any forum I were (a lot of them) I initially thought ''yes I finally find the answer'' but when some time pass off I was again and again without answers (adrenal fatigue, SIBO, heavy metals, subclinical hypothiroidism, Vitamin D deficiency, Hughes Syndrome, Lyme disease, MS, Vitamin B12 deficiency, leaky gut syndrome, candida.........)

    I'll try to be as simplistic as possible.

    Ok here is my story (it is not possible to be short)

    In may 2003 I realised that I became constipated. It was not usual constipation but constipation in a way that i was unable to empty my bowel fully. Always some unusual sensations of not being able to empty my rectum. Then some discomfort in lower left abdomen started, not pain but hard to describe sensations of weakness and discomfort. I also developed low back pain. Doctors made colonoscopy, abdominal ultrasound, x rays everythink normal. I realised that it is hard for me to exactlly describe the symptoms. Is it bowel problems is it skeletal muscle problems - there were just constant discomfort. Finally I was dx with IBS. then after some time I realised that my stomach (epigastric area) is bloated all the time no matter if I eat or no. There were constant bloating sensation wich were very uncomfortable. gastroenterologist diagnose after gastroscopy some very litle stomach inflammation, but it was not from any infection or anythink known. Also my all muscles around back were very stiff and slightly painful. I made physiotherapy nothing worked. I made everythink possible to made my constipation better but nothing worked. Then I realised after aprox 5 months in to that that I have constant pain in my TMJ, also all my joints especially knees were unusually cracking but sensations were not painful. I knew somethink is wrong with my body but doctors repeatedly told me that it is just stress and that I need psychiatrist. I thougt ok, if this really could be the couse why I would not try psychiatrist and see. Honestly I was not deppresed never in my life. I was playing soccer for 10 years i just never had any unusual thoughts and stresses in my life. So consequently psychiatrists were never able to help me altough they tought that it is just a matter of time that they are able to find right medication for my case.
    But when the time progressed I was developing new unusual symptoms. lower leg pain, some unusual skin sensations like crawling tingling numbness all over my body but the worse were on my legs. Rheumatologist after 1 year of symptoms diagnosed fibromyalgia. I realised some time that i have very large amount of urine but sometimes not. I also realised that any wound i get it cant be healed in normal time. I also developed some very frustrating symptom to me at that time - decreased sweating during sport activities. Everythink I put in my stomach felt discomfortable and almost everythink made the bloating worse. I was sent to neurology at that time. I was absollutely completely investigated but to my surprise nothing wrong was found. I thougt that this is not posible. How can I have so many symptoms and nothing have been found. How can I have constant prickling, crawling, numbness sensations and EMG's MRi's CT's can not detect anythink. I thought I was going crazy. They tought autonomic neuropathy might be to blame due to decreased sweating but every possible test were negative.

    I forgot to mention increasing fatigue that I was developing. I tried everythink and nothing worked. Then I realised that my skin were slowly changing. I developed high level of anxiety due to knowing that my body is changing and the tests are normal.

    Something about my skin becouse it was really so bizzare. Skin started to feel very dry all over my body and it felt innitialy like it is somehow thicker all over my body but then like it is thinner and thinner. It felt like it is not so elastic and prickly and numb. I knew that skin started to physicaly change but doctors were unable to see anythink wrong. I sudied every skin disease and was unable to find the description for my skin. Some were closely but not identical (scleromyxedema, ACA, fibrosing dermopathy, scleroderma.....)

    So according to my doctors I had IBS, dyspepsia, fibromyalgia, CFS.
    But I know for sure that everything started with constipatin and discomfort in lower left abdominal and low back pain

    I am sure I forgot many think becouse I cant remember everythink.

    If you feel your disease is similar you can ask me anythink you want. It is hard time for me to describe you all becouse it is just not possible. There is so much to describe that I dont know where to start.

    I need to tell you that if you feel your disease is similar, I have almost all the answers. to my symptoms.
    It took me 5 years of extensive investigation and study in area of neurogastroenterology. I will show you what test you need, to show your doctors that it is not all in your head.

    One important question I have here. This is very important - when you say to someone on forum that he just broke your case wide open about ACA, you do not mention on wich body part or where your skin is changing in a way like ACA. Is this all over your body, do skin changes all over your body similary?

    That is for the begining. I think it is enough. O just one think of course, if you feel that you have the same disease there is no name for this yet, but you will be able to show your doctors with their tests that you are ill and you need treatment. In that time I am not sure for treatment options but do think I am quite near to better days. I need to be honest, my disease is slightly getting worse but there is absoluttely no anxiety becouse everythink is explainable and I have more hope of getting better then ever.

    With my best wishes

    Luka

    Last edited by luka540; 10-05-2008 at 02:20 AM.

     
    Old 10-05-2008, 04:43 AM   #8
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    Re: decreased sweating with lyme disease

    Hey Luka!

    Thank you SO SO MUCH for posting your story. My jaw is on the floor. I have been researching my condition for close to two years and never in those two years has anyone (until now) described my symptom pattern as close as you have. I can't believe it!! I just can't believe it!! WOW! THANK YOU again for sharing your story with me. My symptoms and pathology are identical to yours in every way.

    As far as my skin changing, I first noticed it on my inner arms and under/near my arm pits. I also noticed it on my legs as well as my forehead skin too. Honestly, while I can't get a good look in the area, I know that the skin in my crotch area has changed as well. Then I saw it develop in a few weeks on the backs of my hands. Then I noticed my toes were wrinkled more then usual and then my fingers, mainly at the skin right below the nail, not under the nail. A person who doesn't know what my skin looked like before will say they don't see anything wrong with my skin, but what it amounts to is that it looks like my skin has aged ALOT in the last year. And the skin changes are identical all over my body.

    So Luka, I can't wait to hear from you again. Please, please tell me the proper test(s) to look into and what treatment you are going through at this point. I will share that IGenex has diagnosed me with Lyme. I had 3 positive bands and 2 indeterminate on IgM and 2 positive and 2 indeterminate on the IgG portion. I'm going to run my blood again in two weeks to see if it progressed, but given your description of "the condition" I can't wait to hear what you have to share.

    THANK YOU AGAIN!!!!!!! And please don't apologize for your English. Non-native speakers seem to always apologize for their English all the time and in most cases its better then 50% of native speakers. The mere fact that you are fluent in more then one language is impressive. Thanks again!

    Last edited by chris0007; 10-05-2008 at 05:37 AM.

     
    Old 10-05-2008, 07:32 AM   #9
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    Re: decreased sweating with lyme disease

    Hey Chris

    I am also impressed that I can share my story with someone who understand 100%.

    I hope that you understand that progress in your understanding will pe step by step. It is inmposible to explain you everythink at once.

    I know it will be hard to belive for you that your disease is not driven by outside source. Your disease is driven by slight vascular changes in the pelvic cavity due to chronic increased intraabdominal pressure, due to fitness probably.

    I studied extensively area of neurogastroenterology. I will be honest, there are few experts (proffesors) who undersand viscero-somatic and viscero-visceral reflexes better than me. When you describe problems with bowel movement and stiffnes and discomfort in abdominal and back muscles, i need to ask you something here - 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.

    You need to start to belive that your disease is not induced by lyme disease. I will explain you the reason that you can have oportunity to belive.
    When you studied the skin conditions ACA you found out that it is the skin condition induced by chronic lyme deisease. Do you ever noticed that ACA happen all over the body? You know, ACA is local condition and the results are local fibrosing and atrophic changes where pressumably immune system atack bacteria directly in the skin tissue. In the first phase there should be inflammation and the second is fibrosis and than atrophy and thining of the skin wich look older. That is why I ask you where your skin changes developed. your skin is not like that altough you might feel in that way. Your skin changes are secondary to microcirculation changes. And these changes are coming from visceral circulation. (example - instilation of capsaicin inside the gasric body, result is gastric vasodilation and somatic vasoconstriction especialy in skin. Capsaicin is substance that through TPVR1 - transient potential vaniloid receptor on visceral afferents neurons induce visceral vasodilatation. these afferent neurons produce substance like supstance P and calcitonin gene related peptide (CGRP). this substance are neuropeptides and are visceral vasodilators. sorry know it sound very complicated example but the result is THIS: visceral vasodilation and somatic vasoconstriction. Your skin is atrophied all over your body becouse of disturbed circulation.

    Chris I am sorry but I really do not know how to explain you better. I am sure you will understand everythink quite rapidly. I am prepared to help you to better understand your disease.

    So one test would be skin biopsy to see if your skin really atrophied. I suggested this to my doctors and the results was: on histologic exmination skin looks like it is changing in a way of systemic sclerosis (thickening and then atrophy of skin). From that time doctors were unable to say nothing is wrong with you, but were starting to belive me and were starting cooperate. Of course I was examined for systemic sclerosis but I dont have it

    See ya

    Luka

     
    Old 10-05-2008, 08:32 AM   #10
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    Re: decreased sweating with lyme disease

    Luca,

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

    Quote:
    Originally Posted by luka540 View Post
    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.
    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!

    Last edited by chris0007; 10-05-2008 at 08:36 AM.

     
    Old 10-05-2008, 08:49 AM   #11
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    Re: decreased sweating with lyme disease

    Hey Chris

    I see you are on the internet. I have some time for 2 to 3 hours now, so if you have time we can lead conversation but I have just 2 hours left today. So please be on the internet

    Luka

     
    Old 10-05-2008, 09:03 AM   #12
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    Re: decreased sweating with lyme disease

    Do you have time chris? If you have please let me know

    Luka

     
    Old 10-05-2008, 09:29 AM   #13
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    Re: decreased sweating with lyme disease

    I'm here! I'll be one for the next hour or so. Thanks!

     
    Old 10-05-2008, 09:32 AM   #14
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    Re: decreased sweating with lyme disease

    see you tomorrow chris

    Last edited by luka540; 10-05-2008 at 10:21 AM.

     
    Old 06-02-2009, 10:05 PM   #15
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    Join Date: Jun 2009
    Location: United States
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    MrTambourineMan HB User
    Re: decreased sweating with lyme disease

    Hi Chris I recently came across your posts under the men's hypothyroidism thread. I find that both my symptoms and my doctor's responses are remarkably similar to yours. I am desperate, and would really appreciate any solutions, or any information whatsoever, you may have come across that could be of aid to me. Thanks

     
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