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    Old 03-22-2006, 01:49 PM   #1
    10D
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    Lyme and G.I. Symptoms

    Hello, i have been having a health crisis for the last two years, that has all but ruined me, my family, my income.

    I have symptoms like colitis, sour stomach, belching, nausea, as well as
    nerve pain, burning feet, joints popping, painful twitches. I have this more or less every day all day long. Many tests including g.i. tests show nothing, blood work including western blot also nothing.
    Along with all of this i have severe anxiety and depression.
    Wherever i post, people are sure i have the topic disease, ie, celiacs disease,
    chrons disease, ms, its all from psychiatric issues and so on.

    In any case, i would be interested in hearing of how lyme effects your g.i. symptoms, how it started and such so i can decide whether to pursue a lyme specialist.

    I really hate the thought of all those antibiotics, they would kill my digestive system, especially without a firm diagnosis.

    Thanks for your thoughts.

    ps know of a specialist in upstate new york, kingston area?

    thank you.

     
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    Old 03-22-2006, 02:02 PM   #2
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    Re: Lyme and G.I. Symptoms

    HI 10D

    welcome to lyme land much support here, your symptoms sound much like lyme and as uncomfortable, i hope you find some relief soon.

    some one will be along who may know an LLMD soon.

    before i found Lyme i was desperate for someone to stop the pulsing and fire that was in my chest, spenty alot of time knelt on the floor as i couldnt keep still and get away form teh pain, it is level with my heart but central and like i have a throbbing hole through me to my back.

    i have acid that burns up the sides of my throat and on occasions is so painfull i cant breath, i imagine acid reaching the top of teh food and breathing track and causing much discomfort and confussion.

    the pain in the back between the blades feels as if my vertabres are fused together and pounding in pain.

    most time have had to visit the walk in centre and get told to take ibrufen and pain killers, which relay complicates teh belly more. worse thing is docs look at me like im crazy.

    but if i could get rid of the chest to back pulsing i would be that much more comfortable.

    no ideal if this is what you have or seek discription of.

    hugs
    julesxx
    i have related with refence to essays on teh net, that a problem with GI track prodominently is Bartonella.

    Last edited by battling on; 03-22-2006 at 02:05 PM.

     
    Old 03-22-2006, 02:18 PM   #3
    deejavu
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    Re: Lyme and G.I. Symptoms

    Hi 10D,

    Sorry you are having problems. Your symptoms could be lyme disease as it does affect every part of the body and is often misdiagnosed for another disease. Lyme is the 2nd fastest growing infectious disease after the AIDS virus (some doctors say it's now #1).

    Were you tested by IgeneX Labs in Palo Alto, CA?

    The closest "reputable" LLMD to you is Dr. Richard Horowitz who is located in Hyde Park, NY (not far from Kingston at all). Most members have to travel across states to see a good LLMD.

    I used to go trout fishing in Kingston, remember it well. Lots of ticks upstate New York.

    I understand that you don't want to use antibiotics. I tried antibiotics for 8 months, didn't feel that much better. Later on, I decided to use a protocol created by Dr. David Jernigan who uses "biological medicines" or natural medicines.

    If you want, you can buy his book called "Beating Lyme Disease Using Alternative Medicine and God-Designed Living". I book my book from ******.

    I think you're first step is to make an app't with Dr. Horowitz since he is so close to you and see what he says before starting any treatment plans.

    Good luck to you and let us know how it goes, okay? Lyme is curable!

    Denise

     
    Old 03-22-2006, 02:19 PM   #4
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    Re: Lyme and G.I. Symptoms

    Hi 10D

    I also think your symptoms sound like lyme. GI problems other than GERD are about the only symptoms I don't have so I can't speak to those symptoms. You had mentioned that this has all but ruined your life and I understand where you are coming from. Are antibiotics that undesirable to you that you would choose not to take them at the risk of not getting better? I can't imagine it. Not getting better is not an option for me. There are things that you can do to alleviate the side effects from long term antibiotic use. I also had concerns about this, but I want to feel well.

    There are a few on this board who are going the natural route with good success, which is also an option. They will come on with more information. Bottom line, it sounds like you have been unwell for a while. It is not uncommon to test negative for lyme at labs like quest or labcorp. Most people on this board would recommend that you get tested by Igenex in CA. They specialize in testing for tick born diseases and have better results because they made their test probes with multiple strains of lyme from patients all over the country. Also, they used patient strains of early, middle and late lyme and they use a stronger acid content in the gel that they use to separate out the bands on the western blot. It is well worth it since a positive test can help with insurance co-pays.

    I am sorry you are unwell and hope you find your answers soon. This board is a great place to come for support. Someone will come on if they know of a lyme literate Dr. in your area.

    Frango

     
    Old 03-22-2006, 02:21 PM   #5
    deejavu
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    Re: Lyme and G.I. Symptoms

    Hey Frango,

    We posted at the same time! LOL!

    Lyme definitely affects the GI tract and the digestive system. There are many articles about that on the internet, something to do with our bodies not creating the right enzymes.


    10D: Just a note to let you know that the majority of members here including myself have been told that our symptoms were all in our "minds" and needed to seek therapy. It took 5 years to get diagnosed in my case, and most of the time I kept hearing the same words "see a shrink!"

    Denise

    Last edited by deejavu; 03-22-2006 at 02:24 PM.

     
    Old 03-22-2006, 04:39 PM   #6
    10D
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    Reply to all

    Just a quick attempt at a reply to all for now.Thanks for the comments.
    My G.I. symptoms are more like soft messy stool, cramps, nausea, ibs like, or more like food allergy to everything. Now all medicines dont agree with me, have trouble taking a sudafed for sinus problems, its like im now allergic to all foods or most, and all meds.
    Therefore the hesitation on the antibiotics. I took one biaxin during this, it inflamed the bowels so much i was basically bedridden.

    Forgive me now, but i also hesitate in that Igenex seems to get too many positives. You pay the big money, you get the disease. Then you wonder whether you are sick from the cure or herxing, and there is no proof that you
    ever got rid of the spiros either.
    The lyme doctors of course accept no insurance and i have already spent thousands of my familys savings on this nightmare.
    I realize i may have no choice, no good one anyway.

    As this progressed my mind became worse and worse, watching my income,family and everything going down the tubes. Ive seen several shrinks
    i take pamelor and klonopin reluctantly after trying many ssris. Ive tried accupuncture, yoga, you name it. I havent had a happy day in two years.
    I have a child, and the guilt of this is a big part of that picture.

    The nerve muscle stuff started like tingling, arm falling asleep, lightning type pains, then turned to cracking neck, rotator cuffs, and constantly burning feet.
    Also, i cant tolerate vitamins.
    Rock bottom, and no explanation.

    Thanks again.

     
    Old 03-22-2006, 04:42 PM   #7
    10D
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    p.s.

    I did have at least three embedded ticks during this period, no rash i know it doesnt matter. Today i was getting an adjustment at the chiropractor, and he found another embedded deer tick on me. great. no rash.
    time to get rid of the dogs.

     
    Old 03-22-2006, 04:48 PM   #8
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    Re: Lyme and G.I. Symptoms

    Hi 10D:

    I am sorry that you have gone through so much. Many lyme literate physicians do accept insurance. I know mine does and so do many of the other Dr's recommended by people on this board.

    I know it is frustrating to keep a positive attitude when so much has gone wrong. Your story is not unusual on this board, in fact, I think I would say we have all been there. I have little ones and as of a month ago I lost my job because of my illness. I have medical bills pilling up and am missing out on a lot of things-family, income, social life. Attitude is a big part of fighting this disease and I sense that you are pretty down right now. Lyme disease is curable and you will get better. You have to take the path that feels right for you just as we all take the path that works and feels right for us.

    Everyone on this board is very helpful and for the most part positive in light of how crummy we all feel and how much it has affected our lives. I hope you find that strength and positive attitude here that will really help you to be on the road to better health.

    Hang in there...

    Frango

    P.S. I am sorry that you feel like you have to get rid of your dog. Maybe you were only kidding. We have a lab (tick magnet) and I would never dream of getting rid of her. I also will not stop going outside and sitting in the grass, or letting my kids play outside, or going hiking, camping etc. Life is too short. What I will do is wear bug spray and check everyone everyday for ticks. I do not ever in my life remeber having a tick embedded in me and there are people on this board who are sure they contracted lyme from flies, fleas, gnats etc...there are also studies out there that have shown that lyme can be contracted through other insects. I know you are frustrated and tired of being sick, but it really will get better.

    Last edited by Smyle; 03-22-2006 at 05:17 PM.

     
    Old 03-22-2006, 04:54 PM   #9
    deejavu
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    Re: Lyme and G.I. Symptoms

    Hi 10D again,

    Sorry about all your problems. I agree with Frango that you do sound down right now which is okay. I have been depressed so many times because of this disease. That's what this board is for. To let out our feelings, whether they are positive or negative.

    I had my blood tested for Lyme and all the coinfections, and many of the coinfections came back Negative from IgeneX.

    I mentioned that I am on Dr. David Jernigan's protocol as I don't believe in antibiotics. His products are all natural and have been tested over and over again.

    I think it would be helpful for you to buy his book which I mentioned in an earlier thread to you.

    Good luck,
    Denise

     
    Old 03-22-2006, 07:10 PM   #10
    10D
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    Re: Lyme and G.I. Symptoms

    Frango,
    Thanks for your comments. I dont know if i have this disease! I dont know what is going on except constant pain and sickness for 2 years.
    I posted in an anxiety depression board, they are sure thats whats causing all of this physical pain. I posted in a Chrons disease board, ditto, I posted in a benzo recovery board, they are all convinced that is my problem.Ive been back and forth and i have no idea whats wrong. The depression and anxiety is terrible from all of this and nothing helps with that either.
    The doctor mentioned in Hyde Park does not take insurance and if i remember correctly, im looking at about 1500. cash including the blood test. Ive used thousands of our savings on this and nothing.
    How are you doing and what are you doing for your lyme?

     
    Old 03-22-2006, 07:12 PM   #11
    10D
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    Re: Lyme and G.I. Symptoms

    ps Frango,
    I cant blame the dog for certain, so the dog will stay. The dog loves me, but if i thought for one minute i could get my life back, the dog would be hitchhiking.

     
    Old 03-22-2006, 07:14 PM   #12
    10D
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    Re: Lyme and G.I. Symptoms

    Deejavu,
    How long have you been ill with this, how bad is it for you? And what are some of the things you do on this natural protocol? Supplements, or herbs?
    Id be interested.

     
    Old 03-23-2006, 03:59 AM   #13
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    Re: Reply to all

    Quote:
    Originally Posted by 10D

    Forgive me now, but i also hesitate in that Igenex seems to get too many positives. You pay the big money, you get the disease. Then you wonder whether you are sick from the cure or herxing, and there is no proof that you
    ever got rid of the spiros either.
    The lyme doctors of course accept no insurance and i have already spent thousands of my familys savings on this nightmare.
    I realize i may have no choice, no good one anyway.
    Thanks again.
    10D,

    I had the same concern as you regarding IgeneX, but even people on this board received indeterminate and negative results. I was told just yesterday, by the nurse in my docs office, that they were "blown away" when my test came back "postive - Active Lymes" because they so seldom see that. It is disconcernting (at least for me) to not know for certain what one has. I think it might help your frame of mind, and actually lift your spirits (I know this sounds strange) to get properly diagnosed.

    Many people don't know (I didn't until recently!) that many insurance companies that normally wouldn't pay for IgeneX will do so with "prior authorization". This has to come from your doctor. Someone on this board mentioned this (or maybe it was another board) and I was very grateful to find it worked. Insurance companies won't devulge this up front, of course, unless you call and ask.

    All the best!

    Prema

     
    Old 03-23-2006, 04:34 AM   #14
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    Re: Lyme and G.I. Symptoms

    HI again 10D

    i have been allergic to all srri's and whne i told my phyciatrist i had teh same reaction form a cough sweet she said it was because i imagined it and no ingriedient was the same.

    She was wrong.
    Benedryl, cough sweets, SRRi's, toothpaste, and headache tablest all made me ill the same way in different levels of attacks.

    very debilitating attacks.

    i located E171 in all of them so phyciatrist was exteremly wrong to huff at my suggestion.

    I have taken E171 out of my diet where possible and it definately has helped, although not easy to locate meds to take.

    I think allergies are a large part of what we have and Lyme has mutli ways of defunctioning us.
    I never referred to E numbers in my life, now i monitor my foods and am finding some results.

    E number lists are on the web and even give some effects they cause.

    any relief is some relief, right?
    as long as we have new things to try we have hope.

    big hugs
    Jules xx

    I have a lad who now is 23 but through childhood i would cry very much as i felt awfull that i couldnt enjoy time with him, i started to improve and then got bitten and snow balled.

    I still feel guilty now and hes an adult.
    I have noticed that i may be ill but the main thing is im here and he sees im here, and Lyme just loves to get the old guilt going.
    You didnt ask to be ill honey.
    You will get better and will have plenty time to spend with you child.

    xxx jules

    Last edited by battling on; 03-23-2006 at 05:10 AM.

     
    Old 03-23-2006, 05:33 AM   #15
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    Re: Lyme and G.I. Symptoms

    Hi 10D:

    I really do feel for you, it is so depressing to be sick and not know why. I would be happy to share a little of my story with you.

    I have not felt well for probably 4 years. I had a series of miscarriages, then had some problems that required a stress echo and an upper gi series. Everything was negative. I also started to experience a lot of fatigue. All the Dr's kept telling me-stress, anxiety, depression etc. I knew in my gut that it was none of these things and that something was really wrong. Fast forward to this past summer. I had a rash on my leg (petechial-not a bullseye) and started to have visual disturbances, depth perception, floaters, everything was too bright, balance and hearing issues. This all went on for a few months until I had two episodes of near fainting while driving that landed me in the ER.

    I had CT scans, MRI's, balance and hearing tests, ultrsounds-carotid and abdominal, blood work, wore a holter monitor did another stress test, eeg-on and on. I had been told that I had atypical migraines, aytpical menieres, atypical seizures etc, etc,-like you said every specialist that I saw thought I had some variant of one of their diseases. The only thing that has come back abnormal is my eeg-consistent with lyme. A nurse friend asked if I had been tested for lyme and I started to research lyme. The minute I saw the symptoms and read peoples stories I new in my gut that this was what I had. I have been tested multiple times by quest, labcorp-all negative. My PCP agreed that it could be lyme and started me on 200 doxy- I herxed after 4 days and pretty much continually after that. After a month I switched to Ceftin and felt like I was making slow progress, until I had to go off the abx for a week before doing an LP. I never felt like I got back to where I was after that.

    My IgM test from Igenex was indeterminate, I had 6 reactive bands 3 positives and 3 indeterminates. But many of the bands that I reacted to were lyme specific bands. This along with the fact that I have almost every symptom associated with lyme made me even more sure. I had tingling, joint pain, slight Bells palsy etc- all these things going on for a few years, but until I couldn't drive anymore I didn't stop and take notice that I was really not well. I could not find an LLMD in the twin cities who would treat me and since my issues are predominately CNS I knew what I needed were high dose orals or I.V. I have finally found an llmd about 3 hours from where I live and I am on high dose oral. I hope to avoid IV, but as I mentioned I lost my job a month ago, have two little boys, and I need my life back as quickly as possible. I feel like I am making slow, but steady progess. I have considered the natural route, and I have already decided that when I go off abx I will add in Dr. Jernigans products as I hope never to have to go through this hell again.

    I hope this helps and I hope you figure out what is causing your illness. The nice thing about testing at Igenex is that first of all it is not too expensive to do just the lyme western blot ($95 a piece for the IgM and IgG-you have to do both and you have to pay, but some insurance companies will reimburse) You do not have to go to an llmd to do this test. You can call Igenex and they will send you the kit for free then your PCP can sign off on it and draw the blood. You may get a No and people do-or you may be like peregrine and after years of suffering get a glaring yes and then you have your answer. Dr. Harris at Igenex is very good about calling back if you have questions on your results.

    Hope this helps and I hope you find out what is causing your illness.

    Frango

    P.S. I am glad the dog gets to stay

    Last edited by Smyle; 03-23-2006 at 05:36 AM.

     
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