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    Old 01-14-2015, 06:17 AM   #1
    cg3
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    Question 6 year mystery

    Hi, I am a new member 'so to speak' and I have not posted yet so I hope this is being posted in the correct area. Thank you to whoever reads this and to anyone who may have any suggestions. Also thank you to all who have posted here in hopes of finding help or helping someone else. This is a great site with a wealth of information.

    I joined this site several months back because during my extensive research for what my 6 year unsolved health issue might be, I suddenly ran across a post of someone who has similar symptoms as I do. More importantly they experienced the same relief from taking a simple 5 day antibiotic (Azithromycin or Zithromax). Anytime I have taken the antibiotic I get 4-5 weeks of feeling fantastic and then I am right back to my previous state of illness. I did leave the country in 2009 and a few weeks later I started having problems. Now you would think this would be an easy diagnosis with just that information but as you read on and see all the things I have tried, I think you will find this is much more than it first appears.

    Over the past 6 years I have witnessed this same antibiotic scenario 3 times when taking Z-max or Azithromycin but all the Dr's I have seen say it is a placebo affect of which I am certain is not the correct answer for what I am experiencing. After you read my symptoms I think you will agree that it can't be a placebo affect if most of my symptoms go away for a few weeks.

    My symptoms:
    Everything started with Fatigue, finger nails ridged/clubbed with blood streaks, poor sleep, fever, all upper molar teeth hurting, tinnitus and extreme dehydration anytime I exerted myself.
    Other symptoms that came on through the years: Toe nails turned light blue in color and ridged, weight loss (mainly muscle mass), joint pain, brain fog, constipation, bloating, digestive disorders, food allergies, chemical sensitivities, eyesight fluctuation, muscle & joint weakness, air starvation, labored breathing, chronic cough, low grade fever that comes and goes, hair graying overnight, hair texture change, hair falling out, sores in the scalp, low sex drive, lost interest in everything.........

    What I have tried that basically has not worked or gave little relief:
    I moved out of my house for 4 months to a different state to see if I had an environmental allergy but I only became worse.
    I had all my silver amalgams removed, no change.
    Root canal removed, no change.
    4 teeth removed from pain (same teeth that were just filled with white resin)
    Went to an Oral specialist, had oral pH test and full exam
    3 months of IV chelation therapy for lead and mercury, no change.
    10 weeks Ozone shots for cavitation in lower jaw where there was no pain
    Lyme disease specialist, 3 months of several antibiotics, felt much worse.
    Changed diet to juicing 2x/day, gluten free, lactose free and sugar free.
    Elimination diet, no change
    Acupuncture, Chinese herbs & diet
    Electrodermal screening
    Chiropractor
    Colonics, coffee enemas
    Digestive aids, probiotics, enzymes, ginger, fennel, turmeric......
    Parasite zapping for 3 months
    Hulda Clark's Parasite cleanse, T-worm cleanse, Kidney cleanse, Liver cleanse
    Far-infrared sauna, steam sauna
    Purchased an Ozone machine for Ozone water and ozone ear insufflation
    Hormone specialist
    Sinus surgery due to sinusitis and deviated septum (I do breath better)
    Allergy shots
    UVBI, Glutathione IV injections, Vit C IVs
    Blood letting for high iron
    Beta glucan
    Berberine
    Diatomaceous earth, Bentonite, Green clay
    Colloidal Silver


    Supplements presently taking:
    Fish oil, Vit A, C, D3, B-50, Magnesium, Cascara Sagrada, Enzymes, HCI, liquid trace minerals

    Tests I have had:
    Colonoscopy & EGD
    Many general blood tests, CBC, liver, sugar, CD57 test for Lyme.......
    Malaria test
    Hep-c test
    HIV test
    Lupus test
    Rheumatoid test
    Fybromyalgia test
    Stool tests (Several for parasite purpose) All negative.
    Urine tests
    Oral pH tests
    Diabetes tests
    Hair analysis
    Allergy tests.


    As you can see, I have tried many things in the 6 years of trying to solve this mystery but basically I have been treated only for the symptoms and not the core issue. One would think that all my combined efforts would certainly help but if they have it has been very little at this point. I guess I would be much worse if I did not try anything so maybe I am doing what I can do to maintain the condition I am in now?

    So I guess my hopes are for someone to read this and say yes, I have a friend or I have gone through this. I know there is a slim chance but I have to try all avenues. So, if anyone here has ever heard of this type of reaction to a simple antibiotic along with experiencing some of my symptoms, I would greatly appreciate your input.

    Thank you so much for reading this because I know it is a lot to read and it is a mystery as well. I wish the best to everyone on this board and I appreciate the wealth of information.

    Last edited by cg3; 01-14-2015 at 10:36 AM.

     
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    Old 01-14-2015, 07:25 AM   #2
    Machaon
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    Re: 6 year mystery

    Quote:
    Originally Posted by cg3 View Post
    ... Anytime I have taken the antibiotic I get 4-5 weeks of feeling fantastic and then I am right back to my previous state of illness.
    As thorough and as analytical as you have been, you have probably already considered the possibility of a MRSA infection. Have you tried other antibiotics other than Z-max or Azithromycin? Have you considered staying on antibiotics for an extended period of time?

    Quote:
    ... all the Dr's I have seen say it is a placebo affect of which I am certain is not the correct answer ...
    There are very few really competent, analytical, probative doctors available. Instead of admitting their shortcomings in correctly evaluating a patient's health problems, they will say that it is the patient's psycho, or the patient's anxiety or stress, or, as in your case, that it is not real and only a placebo effect.

    I agree with you. Your symptoms and health problems and apparent intelligence, and diligence, greatly discounts any placebo effect.

    I've got extremely sensitive allergic and non-allergic asthma. There are many MANY things that can worsen my health, including things that I wear, plastics, fragrances, chemicals, auto exhausts, food additives, inks, VOCs, etc. That is what interested me in your post. My health problems were started because of a live flu vaccination 50 years ago; and further sensitized by a long term sinus infection.

    You have gone through a long, difficult struggle. I wish you much luck in getting relief!
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    Old 01-14-2015, 08:06 AM   #3
    solofelix
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    Re: 6 year mystery

    Hi,

    You mention Constipation, Bloating and Digestive disorders but Among your many tests I don't see Endoscopy and Colonoscopy.
    "Have you had these tests"?...

    Solofelix.

     
    Old 01-14-2015, 08:38 AM   #4
    JohnR41
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    Re: 6 year mystery

    The normal gut (digestive tract) is home to trillions of bacteria. Are they all the same? No. I don't think anyone knows for sure how many different types of bacteria there are. In total it's known as the "microbiome". Antibiotics are destructive of this community of bacteria. Different types of bacteria do different jobs to keep one in good health. For example, to modulate your immune system and your metabolism. I'm just learning about it myself.

    The problem, as I see it, is that the probiotics you took may not have replaced everything that you lost, namely the proper balance.

    If you have a relative who is in good health, you might want to look into getting a fecal transplant. This would help you to achieve the proper balance.

    It's just a thought and might be worth a try.

     
    Old 01-14-2015, 08:47 AM   #5
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    Re: 6 year mystery

    In all the standard medical tests you have had, did any tests show anything abnormal? One thought that could tie most of this together could be rheumatic fever. Have sore throats off and on been a part of this picture? Do you have enlarged tonsils or a history of frequent strep throat? Enlarged tonsils can harbor strep, and the immune system can react in an autoimmune way to the strep causing problems with fevers, joint pains, heart and kidney problems, etc. It would also cause possible sinus problems, hence the upper teeth pain. I would suggest you ask your Dr. for the following tests: sed rate and CRP for inflammation, ASO titer (anti-streptolysin antibody), urinalysis, and if ASO elevated, an echocardiogram. It would be good to get these done during a period of fever if possible or during a flare of increased symptoms. A throat culture would be good to check for chronic strep in the tonsils. Azithromycin is an anti-strep antibiotic, and could explain your response to it. Few Drs. ever think of this illness anymore, but it does occur and often goes undiagnosed for a long time.

     
    Old 01-14-2015, 09:28 AM   #6
    cg3
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    Re: 6 year mystery

    Hi Machaon, thank you for your kind response.

    Quote:
    Originally Posted by Machaon View Post
    As thorough and as analytical as you have been, you have probably already considered the possibility of a MRSA infection. Have you tried other antibiotics other than Z-max or Azithromycin? Have you considered staying on antibiotics for an extended period of time?
    I have considered MRSA and have taken many natural remedies to try and resolve it (if I indeed had it) but to no avail. As of just a few minutes ago, I received a referral to Duke University hospital in Durham, NC with the Infectious Disease dept. I will hopefully be tested for Endocarditis which is basically a form of MRSA. I am really going to push testing for this condition. By the way, Zithromax is one of the ABXs they use to treat this condition so that may be why I am getting short term results with it. Duke is one of the leading hospitals for Endocarditis which is a big plus for me because I do have so many of the symptoms. Basically bacteria enters the blood stream usually through the mouth from a dental procedure or other dental issues. The bacteria attach to a heart valve (many times from a congenital heart defect) and cause what is described as a vegetation build up on the heart valve. This will eventually destroy the valve or worse yet, the vegetation can break off causing an embolism in which case could lead directly to the brain resulting in either stroke or death.

    During my 3 month stint with the Lyme disease specialist, he prescribed me Zithromax, Bactrim, Amoxicillin, Doxycycline and one other that I can't seem to remember at the moment, so yes I have tried other ABXs with no success. As I understand, if diagnosed with Endocarditis, I will most likely be on an IV ABX for 4-6 weeks (which I have not tried IV ABXs) and possibly with dual ABXs that are tailored to my specific infection. I will have to wait and see what their direction will be with me but I will post my progress here.

    Quote:
    Originally Posted by Machaon View Post
    There are very few really competent, analytical, probative doctors available. Instead of admitting their shortcomings in correctly evaluating a patient's health problems, they will say that it is the patient's psycho, or the patient's anxiety or stress, or, as in your case, that it is not real and only a placebo effect.
    Yes, unfortunately you are correct. So many many Dr's in my case have basically given up on me with hopes that I will eventually fade away. With my particular experiences this is generally due to either lack of knowledge, lack of diligence or I am simply taking up too much of their time.

    Quote:
    I agree with you. Your symptoms and health problems and apparent intelligence, and diligence, greatly discounts any placebo effect.
    Thank you for acknowledging my efforts and for your assurance regarding the placebo effect 'diagnosis'.

    Quote:
    I've got extremely sensitive allergic and non-allergic asthma. There are many MANY things that can worsen my health, including things that I wear, plastics, fragrances, chemicals, auto exhausts, food additives, inks, VOCs, etc. That is what interested me in your post. My health problems were started because of a live flu vaccination 50 years ago; and further sensitized by a long term sinus infection.
    Wow, 50 years is a very long time to deal with such debilitating conditions. I have a feeling that your diligence far exceeds mine. Just wondering if you have ever tried Hulda Clark's liver cleanse? It is claimed that every time a cleanse is completed, one or more allergies dissipate. I did one so far and did not believe what others were saying pertaining to the end results of stone removal, actually seeing the results and then experiencing the results.

    All the best to you and your health endeavors, I wish you well.

    Last edited by Administrator; 01-14-2015 at 11:50 AM.

     
    Old 01-14-2015, 09:39 AM   #7
    cg3
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    Re: 6 year mystery

    Quote:
    Originally Posted by solofelix View Post
    Hi,

    You mention Constipation, Bloating and Digestive disorders but Among your many tests I don't see Endoscopy and Colonoscopy.
    "Have you had these tests"?...

    Solofelix.
    Hi Solofelix, thank you for the reply. Unfortunately I forgot to include that information so the answer is yes, I did have a recent endoscopy and colonoscopy in Oct. The results were basically the usual blanket diagnosis of IBS with acid reflux. Again, I feel this is only a derivative symptom of the core issue because most of these issues resolve themselves while the ABX is still in my system.
    Thanks again,

     
    Old 01-14-2015, 10:05 AM   #8
    cg3
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    Re: 6 year mystery

    Hi JohnR41, thank you for your reply.

    Quote:
    Originally Posted by JohnR41 View Post
    The problem, as I see it, is that the probiotics you took may not have replaced everything that you lost, namely the proper balance.
    I feel as though this is simply a symptom of the overall core issue mainly because when I take the ABX most of my issues go away. This is not to say that my gut is in perfect balance but with all the other dietary inclusions I have made for proper intestinal flora along with the multiple stool sample tests coming up negative, I would have to conclude this is coming from a source that is not common. I am thinking this is a bacterial blood infection. I did just receive a referral to Duke University hospital today with the Infectious Disease dept so I think my next step is exploring the condition called Endocarditis. I seem to have most of the common symptoms and Duke is rated very highly with this particular condition.

    Quote:
    Originally Posted by JohnR41 View Post
    If you have a relative who is in good health, you might want to look into getting a fecal transplant. This would help you to achieve the proper balance.
    I have not considered this but if my experience with Duke University falls through I will definitely consider a fecal transplant. Thank you for the suggestion, I do appreciate it.

    Quote:
    Originally Posted by JohnR41 View Post
    It's just a thought and might be worth a try.
    Absolutely it is worth a try and I appreciate you taking the time to suggest your view of my situation.

     
    Old 01-14-2015, 10:30 AM   #9
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    Re: 6 year mystery

    Hi ladybud, thank you for your reply.

    Quote:
    Originally Posted by ladybud View Post
    In all the standard medical tests you have had, did any tests show anything abnormal?
    Actually the only test that vaguely showed anything abnormal was the CD57 test (Which isn't standard) which was performed by a Lyme disease Dr. It basically showed I had low T-cells so he based his Lyme diagnosis almost entirely off of that test. The other tests were absolutely normal.

    Quote:
    Originally Posted by ladybud View Post
    One thought that could tie most of this together could be rheumatic fever. Have sore throats off and on been a part of this picture? Do you have enlarged tonsils or a history of frequent strep throat?
    I have not considered rheumatic fever mainly because I do not have sore throats, enlarged tonsils or a history of strep throat. I did just get a referral to Duke University Hospital with the Infectious Disease dept today so I am hopeful they will test for more of the unusual conditions as you suggested.

    Quote:
    Originally Posted by ladybud View Post
    I would suggest you ask your Dr. for the following tests: sed rate and CRP for inflammation, ASO titer (anti-streptolysin antibody), urinalysis, and if ASO elevated, an echocardiogram. It would be good to get these done during a period of fever if possible or during a flare of increased symptoms. A throat culture would be good to check for chronic strep in the tonsils. Azithromycin is an anti-strep antibiotic, and could explain your response to it. Few Drs. ever think of this illness anymore, but it does occur and often goes undiagnosed for a long time.
    Great suggestions, I will be telling the Duke University Dr's to test for all of your suggested tests. Right now I am leaning towards Endocarditis because I have so many of the usual symptoms and Duke is highly rated in that particular area. I will post back here with my experience and let everyone know the results.

    Thank you so much for your time and suggestions, I really appreciate it.

     
    Old 01-14-2015, 08:23 PM   #10
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    Re: 6 year mystery

    Rheumatic fever causes endocarditis, affecting the heart valves, which is why I suggested an echocardiogram to check the valves in the heart. Endocarditis causes the splinter hemorrhages (black lines) in the fingernails as one symptom, plus the shortness of breath and weakness with exertion. If nothing turns up with the ID consult at Duke, try rheumatology as your next stop to look for autoimmune disease without infection. Erythromycin antibiotics like Z-pack can act as anti-inflammatory, causing improvement in inflammatory conditions. They also are effective when staph infections are present. So ID consult is a good idea. I'll be interested to hear what shows up, and know that you are getting some help.

     
    Old 01-15-2015, 06:35 PM   #11
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    Re: 6 year mystery

    Quote:
    Originally Posted by ladybud View Post
    Rheumatic fever causes endocarditis, affecting the heart valves, which is why I suggested an echocardiogram to check the valves in the heart. Endocarditis causes the splinter hemorrhages (black lines) in the fingernails as one symptom, plus the shortness of breath and weakness with exertion. If nothing turns up with the ID consult at Duke, try rheumatology as your next stop to look for autoimmune disease without infection. Erythromycin antibiotics like Z-pack can act as anti-inflammatory, causing improvement in inflammatory conditions. They also are effective when staph infections are present. So ID consult is a good idea. I'll be interested to hear what shows up, and know that you are getting some help.
    Thanks again. One other thing I did was to call the company who makes the Z pack and I asked them what all it treats besides the obvious bacterial infections and they pointed me to a website which shows all of the trials that it has been used in. Several trials that really got my attention (because I left the country in 09 and this mess all started) were for parasite infections. I found they use it in tandem with other ABXs for Malaria and Leishmania and a few others that I can't remember. My thought was maybe the Z pack wasn't strong enough or taken long enough to kill all the stages of parasites and they essentially repopulated causing me to fall ill again (I hope that makes sense). Since then I concentrated on parasite cleanses and zapping but obviously that is not working for me and it is also the reason why I joined this forum, to hear others views. I think your advice is spot on with the suggested tests and for the back up plan of seeing a Rheumatologist. I will definitely get back to you after seeing the ID Dr. and let you and the rest of the board know how it went.

    BTW, you mentioned Rheumatic fever, my grandfather had Rheumatic fever and was disabled by 40 and passed at 63 from 25 years of heart issues. My father also passed at 63 from a heart attack. Needless to say I am going to be all over this if there is even a remote possibility that I may have it. Thanks for the suggestions!

     
    Old 01-29-2015, 01:17 PM   #12
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    Re: 6 year mystery

    Quote:
    Originally Posted by ladybud View Post
    Rheumatic fever causes endocarditis, affecting the heart valves, which is why I suggested an echocardiogram to check the valves in the heart. Endocarditis causes the splinter hemorrhages (black lines) in the fingernails as one symptom, plus the shortness of breath and weakness with exertion. If nothing turns up with the ID consult at Duke, try rheumatology as your next stop to look for autoimmune disease without infection. Erythromycin antibiotics like Z-pack can act as anti-inflammatory, causing improvement in inflammatory conditions. They also are effective when staph infections are present. So ID consult is a good idea. I'll be interested to hear what shows up, and know that you are getting some help.
    Well I just got my blood test results from the ID Dr. at Duke (In the form of a phone call) and all were negative. Reading from the ordered test list they sent me home with, the tests include: SED rate, Automated, CRP, Inflammatory, RPR, HIV 1 & 2, Antigen, 2 Blood cultures. He said one test (Culture or SED rate, not really sure which one) needs 5 days to be completed but because it has been 3 days already and nothing has shown, then most likely it will be negative as well.

    I was not happy with this Dr. to say the least. He was very kind but seemed very young and a bit closed minded and lost with some of my knowledge (Which is basic). The Dr. did not believe my story about how Azithromycin makes most of my symptoms go away for a few weeks. He basically said he has never heard of that so I proceeded to tell him the other benefits I found out about Azithromycin. It was soon apparent he knew nothing about it being used for Malaria, Leishmania, Cystic Fibrosis and as an anti inflammatory....... His knowledge seemed to halt at anything other than the general bacterial remedies so he basically shrugged it off. He also did not believe I had blood streaks under my fingernails because I presently do not have them. He did not do a urine analysis or a throat culture as ladybud suggested because he said there was no suspect reason to do so. He said there was no indication of Rheumatic fever or Endocarditis which is unbelievable to me. He did say that I could get an ECG but it would take a few days to order it and I live 3 hours away so I may soon have that done as well but in my area.

    I asked him what he thought of all my nails and toenails being so ridged up and blueish in color and his response was; That can sometimes come with age. I then asked if maybe the blueish look on my toenails along with cold legs and feet could be caused from a circulation problem and he stated; No, it does not tell me anything about circulation.

    I knew it was a bad sign when I could not find this Dr. even being mentioned on Duke's roster of physicians or anywhere else on the internet, which I suspect means he is fresh out of med school.

    So, I am back to square one and basically have no clue where to go next other than a Rheumatologist. Any other help or direction in this mystery would be greatly appreciated from anyone who reads this.

    Thanks again ladybud, I appreciate your time, advise and your knowledge.

     
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