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    Old 03-16-2006, 07:25 AM   #1
    Roman77
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    Post back from my trip to see dr crist...lots of news and questions

    well i am home.

    what an exhausting but worthwhile trip. i learned so much and definitely have a new battle plan courtesy of dr crist.

    warning this post will be long....but want to share the news with you all, so bare with me.

    evne though i flew down there this time it was still more than i could handle, but definitely better to go through 2 days of heck than trudge through 4 to drive it right? right. anyway it was nice though to see my dad for a bit, despite being so tired. and i'm glad he was with me because i had such a time trying to keep focused and deal with getting tickets, security, and all that while trying not to cry from the pain and brain fog...ear pulgs the whole way, plus a ton of phenegran to keep me from upchucking and pain meds to keep me from balling. always fun. and waded through a few panic attacks. but all to be expected i guess. anyway sorry to veer off from the main point...i have big changes to my lyme treatment. not what i was expecting, but it is a new path. so here's the jist of it, think i could write a novel after all the planning dr c and i did on wednesday!

    dr crist reviewed all of the meds i've tried so far and asked me about my herxes and progress....not much great to say there. told him i basically feel like i'm simply treading water and could go under at any time. but he looked at me and told me not to give up hope, he had a plan. he said we have lots of options to attack with still. whew, that was much needed shot in the arm so to speak.

    he reminded me that sometimes some don't repsond well to treatment and he belivees it's due to length of time it's been running free in their body and other factors that the lymes has caused in their body. first from the reactions i had to the clinda/quinine combo he strongly bleives i am also fighting babesia. i asked if we should test for it, he said not unless you want to throw away some money just have it on paper. so since i'm on disablitiy and every penny counts am just trusting his experienc and my symptoms to show the truth there. but he says we will treat it with the lyme, when i restart my antibiotics in a few months. i knid of freaked out at that, but here is his reasonging:

    first, lymes grows slowly so i'm not going to lose ground that i've fought hard for. good to know.... secondly, as he always says i dind't get sick overnight, so my road may be longer than others but it's still has hope, as sometimes he has patients that have been on an unsuccessful antibioitic treatment regimen only to go off of them on a holiday for a few months and then restart them and do amazingly well. brain fog sets in with that over the reasoning but it sounded logical at the time, smething about letting the body rest, heal, and process the build up and die off...so all i remember is that i have to wathc how my symptoms are over the next few weeks, if i stay the same or get better that's good, if i get worse it's bad and will start up active treamtnet again.

    thirdly, we won't be wasting that time off. no vacation for me...just new attack plans! i now need to treat the two other things that dr c are the problems that the lymes has caused that are holding up my progress ~ mainly my hypercoagulation and hypothryoidism (knew about the one, and had guessed about the other, but blood tests from yesterday now confirm it). so starting next week i will be giving myself heparin injections 2 times a day to thin out my blood. ouch, not looking forward to that. but apparently with hypercoagulation my body can't clean out itself b/c the blood is so thick it can't do it's job. so basically i am sitting in a dirty bath tub all day long trying to get clean but only getting dirtier, if that makes any sense to you all. this also was a relief to hear as dr c said this is probably why my feet and my hands turn yellow and white and tingle/burn so badly, why i can't feel hot and cold on my hands and legs, only numbness and it also explains a bunch of other symptoms that have gottne worse. he says that this makes it hard for oxygen to get to those smaller areas and in general throughout my body, and we know how much lymes loves no oxygen. plus with my thick blood it apparently hides the syprokeets in the "syrup" (that's what dr c compared my blodd to ~ YUCK!) makes layers in my blood vessels so the antibioitcs can't get to them. such sneaky little suckers. hopefully this part of the plan will help ease some of my pain and symptoms, according to dr c it has a 80% response rate in his patients that have tried it. we will see. fingers crossed.

    as far as the hypothyroidism goes in 2 or 3 weeks i'll start on thryoid meds to bring my hormone levels up to normal levels. funny thing is my local doc tested my thryoid back in october and accoring to him it was normal. but dr c took one look at that old test, and ordered a new one asap and said i should have been on meds back then. my numbers were already higher than safe, and i guess the higher the numbers the slower my metabolism and lower the levels of the hormones the body is producing. sigh. just another ***** out of my trust and belief in the knowledge of the average docs. but dr c said that the meds will help with some of my symptoms as well. more good news.

    i really never knew how many problems the thyroid and blood disorders could cause in my body, after some searching today and reading the info dr c gave me it really makes sense as to why i am struggling to make any forward movement in the battle.

    finally, once those 2 things are undercontrol maybe in a month and half or so (always do one new thing at a time...heard that a bazillion times this week! but it's a good reminder) then i'm to start on the questran protocol to bind and remove all the toxins and such that the lymes has embedded in my muscles and body fat. once all of this is accomplished i can restart my antibiotics, possibly iv's according to dr c, perhaps by mid summer as apparently by then with these treatments my body will be much stronger and cleaner and my immune system will be much healthier and will be able to handle active fighting and purging of the die off. hopefully then my herxes will be minor and easily handled by my body, at lesat that is what dr c is hoping, me as well of course!

    whew...that's alot to write. and that's the short version! yikes, my brain is full. but it is also full of hope again, hope that in a few months i'll be gaingin some of my life back. that would be WONDERFUL!!! so now some questions for those of you who mde it this far:

    has anyone been on heparin therapy before and had good results or have any info for me?

    anyone giving themselves shots and familiar with the "z" technique? am pretty scared to start shooting myself in the stomach but gota do what i gotta do. mickie aren't you giving yourself shots? how has the bruising and pain been?

    anyone on thryoid supplements and have suggestions/warnings?

    i know there are some on the board that have been on questran...could you guys refresh my memory on your experiences?

    okay think i'm done for now....sorry to be so long winded but am excited about the new plan. it feels good to have hope and an action plan again. praying that this will be my magic bullet.

    thanks all for listening and sharing....you're all in my prayers.

    maureen ~ thanks...meant so much to me...brought a tear to my eye.

    marsha ~ haven't read your posts yet, will post when i can but for now can see that it's not been good, am so sorry and am thinking of you.

    shanna
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    Old 03-16-2006, 07:57 AM   #2
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    Re: back from my trip to see dr crist...lots of news and questions

    hi shana!!! yes, i know the hazzle is to go to get to the doctor, flying, driving, hazzle anyway..but happy for you that you went and he came out witha plan and you sitll have many options of plans, you i agre with what he said, dont give up!!for what i have read, dor crist seem very caring, i wish i had gone to him, but i couldnt wait that longer and for me, is really a big big trip there...from peru, to miami, to miami, to san loius, from san louis to springfield...very very hard to handle..sorry i dont know about medication, i just start mine with plan 1, but i am curios about the abbesia part, y had a titer of 1:40 in my igm and doctor cameron didnt pay attention to that, he said that is not telling him anything..but i do have some symtoms, the arritmias, rapid hearbeats , skin allergies and low grade fever..i hear artemisia works for that, i asked doctor cameron abouit it and said didnt knew that medicine, so if i suspect i might have it would like to take it.. maybe will make me feel very good of bad..i am so glad for you that you could see your father, at least for a little bit..i am praying for you that this time everything will work out, keep faith, keep battle, and you will win!!!
    hugs

     
    Old 03-16-2006, 08:21 AM   #3
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    Re: back from my trip to see dr crist...lots of news and questions

    Hi Shanna

    Glad to hear you had such a good visit with Dr C. From your posts and Maureens he sounds like he is compassionate as well as very smart as to how to treat this disease. You are in good hands. I know what you mean about having hope and a plan (and a plan B). It is everything. I think you have to have both to get through a crisis. Sometimes you need to reaccess and change the plan (that's where plan b comes in). That's what we need to do, and I like Dr C's methods. I just know that with that combination of compassion, and his knowledge, and ability to adapt and change plans accordingly, you will get well. It is just going to take time. In this instant gratification world we live in we are not used to things taking time. Something I have to remind myself of everyday.

    My LLMD says the 3 Ps. Positive thinking, Patience, and Prayer.

    Love & Prayers
    Kim

     
    Old 03-16-2006, 09:06 AM   #4
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    Re: back from my trip to see dr crist...lots of news and questions

    Shanna

    So glad you have a new game plan. I have blood clots in my left upper chest and under the arm. I started the Levanox 80mg twice a day to thin my blood. My daughter came over last night to give me the first. I gave myself the one this AM. They do go in the tummy area (not close tothe belly button area. Giving it doesn't hurt but afterwards it hurts like crazy . I am to do this for 10 days and I see a specialist next week. I will give you add'l info if you need.

    They did pull my picc line yesterday when they found the clots. I go back next week to Jemsek Clinic for new game plan.

    Couple years ago when symptoms had gotten really bad and I went to Neurologist and he said my blood was too thick. I think the clots started when I had to miss 2 aspirins because of food poisioning (could keep them down)

    Prayers.....Marsha

     
    Old 03-16-2006, 09:33 AM   #5
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    Re: back from my trip to see dr crist...lots of news and questions

    Dear Shanna.

    I am happy to hear that your visit, although exhausting, was fruitfull. So much information to understand and research! Take it slow and remember to rest. Dr. C sounds like a professional, compasionate person.

    I like the idea of flushing your body and getting the blood regular again. Makes sense.

    I had sticky platelets. For about a year my blood tests could not count my platelets because they clumped. My LLMD put me on a supplement called Bromelain. In a few months it cleared up and my platelets are flowing fine.

    As far as the shots, Marsha may be the best person to offer information.

    I take my shots in the upper thigh. I alternate left and right. A few hours after I inject, I can see a huge lump at the injection site. It is hard to the touch and sore. I don't bruise every time, but I have had some ugly bruises there. Sometimes when I inject, I can feel the plunger "skip" as if it hit an air pocket. I freak out wondering if I just injected air into myself.

    I am happy that you have a plan and someone who will help you manage this fight. It makes a big difference.

    You are brave for travelling like you did to take care of yourself. Its hard to do and its exhausting and maybe no one pats you on the back and tells you what a great job you did. So ... pat, pat, pat. You did a GREAT job.

    Go rest.

     
    Old 03-16-2006, 05:28 PM   #6
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    Re: back from my trip to see dr crist...lots of news and questions

    Dear Shanna,

    Told you so!

    I knew his little bag is full of tricks. You are a special patient and he will dig deep. He has been treating lyme for so long I'm sure he has seen just about everything.

    I am going to follow yours and Marsha's stomach shots. Although they are for different reasons you both might have the same result. I supposedly fall in the 10% without hypercoagulation but he still talked about the shots for me. Maybe because I am not showing improvement too. I really expected a positive on that test because about 6 months ago my homeopathic that does the magnet muscle testing said natokinasse (kind of like heparin) would help. I wonder which one was right. I may call him because I don't think the stuff would hurt unless you are having surgery. I may check on the bromelain Mickie mentioned too.

    Anyway I am glad the trip went well and you are back home. Just waiting to hear some good reports in the near future.

    By the way I am just up to 1/2 pill of flagyl twice a day. I don't feel great but can tolerate it so far. Scared to death a herx is on the way.

    Maureen

     
    Old 03-16-2006, 08:31 PM   #7
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    Re: back from my trip to see dr crist...lots of news and questions

    Shanna

    3rd shot. I did this one myself also. It did hurt going in. I think the more you do, the more sore your stomach gets. Dread what it will feel like in a few days. After the shot I rub the area to message the medicine in. Bruising is the size of pin head. My arm and shoulder is still pretty painful. The shot I take is Lovenox 80/0.8ml. Twice a day for 10 days.

    I did get a call from Jemsek Clinic. They made me appt with blood specialist for next Thursday. Said he will probably add coumadin at that time. From his office I go back to Jemsek. Guess I will find out new game plan then. I never dreamed I would be facing this too.

    Its time we both start gaining some ground. I pray it will be soon for both of us.

    .....Marsha

     
    Old 03-16-2006, 11:16 PM   #8
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    Re: back from my trip to see dr crist...lots of news and questions

    Hi Shanna,

    Glad to hear that your trip went well. Dr. C sounds terrific - you're in good hands. And having a game plan really is very reassuring.

    I couldn't read the whole post (major herx - can't seem to follow, it's neuro stuff flaring up) but I wanted to ask about the heparin. How did they come to find out that your blood needed thinning? Did that show up as part of regular blood work or did they test specifically for it? Were there symptoms?

    Also can you tell me a bit about the questran protocol? Is that rx or is it an herbal thing? Thanks!

     
    Old 03-17-2006, 05:52 AM   #9
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    Re: back from my trip to see dr crist...lots of news and questions

    Dear Shanna, Marsha, & Mickie,

    I don't know if this will help but I either read somewhere or a nurse told me one time that when you get a shot and you do that little thing you do to get the air out (push the plunger or whatever) if there is some of the solution on the needle as you stick it in you that is what causes the irritation. Maybe you can run this by your doctor or nurse and see if this is so. If it is true I don't know if you wipe it off with a sterile gauze or what you do. Maybe there is a trick to not getting it on the needle.

    Dear Tinuviel,

    I am sorry you are feeling bad. When we don't hear from you for a few days I just imagine you out enjoying life. I figured something was wrong when I saw all your posts and the time you were posting.

    When I went to see Dr. Crist in October he did a hypercoagulation test to check for thick blood. I can't remember for sure but I think it was like $450. He says in his practice 90% of his lyme patients have this. When I went a few weeks ago he said I fall into the 10% that doesn't but he was still skeptical. He did say he is having good luck with the heparin though so down the road that might be a possibility. When I went to the homeopathic last year and he was testing with his magnets (I know it sounds strange) he determined that I have thick blood because a product called natokinasse seemed to help when he used the magnet with it. He was somewhat surprised. He basically is doing muscle testing using magnets and vials with different substances in them instead of ingesting stuff. I think it is interesting that this is something Dr. Crist checks for so I guess the homeoathic isn't so strange after all. Dr. Crist says you can use lumbrokinasse too and claims it is better. After Shanna's post I am tempted to go back on the natokinasse for a month or so to see if it helps. I don't much like shots. It certainly won't hurt. I guess if you are having surgery or dental work you would stop for a week or so because it supposedly acts like heparin to thin your blood. I'm sure you can find these on the net and they are natural supplements. If you want I will check out the brand my homeopathic gave me because he is very particular or you could just ask your doctor. Hope this helps. I think if we could pool all the little tidbits our doctors come up with maybe we could beat this demon. Hope today is better for you.

    Maureen

     
    Old 03-17-2006, 03:22 PM   #10
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    Re: back from my trip to see dr crist...lots of news and questions

    Hi Shanna
    2 DAYS!!
    ive done 6hrs drive to see Llmd and im exhausted so hugs to you dear.

    Wonderfull you have new plan of attack, its a lovely new beging feeling, and the boost to mental positive thinking i hope is nucing some slymie lymies as you smillin.

    ive never tried any of the new plans, and hope it works wonders.

    I would love more info on that detox of dead lymie med.?
    I askedmy self the otherday how would i treat myself, its been a fear from childhood as a friend in school had insulin injections.

    i think you are all very brave and im blessed not to have to do it.

    so pleased you had a good reuslts

    jules xx

    Last edited by battling on; 03-17-2006 at 03:24 PM.

     
    Old 03-17-2006, 03:39 PM   #11
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    Re: back from my trip to see dr crist...lots of news and questions

    Hi Shanna,

    You are one tough lady! Do make that trip feeling the way you do, I don't know if I could have done it.

    Dr. Crist sounds very smart and extremely open-minded. I like his idea of flushing out everything.

    Questran is actually prescription Cholestyramine. Dr. Jernigan has written about Cholestyramine in relation to removing ammonia and toxins from the body.

    I read somewhere else that it is also a bile-acid resin drug that works by binding to bile acids that contain cholesterol in the intestines, and then eliminating these acids through the feces rather than allowing them to re-enter the blood stream.

    Anyway, hang in there, I am thinking positive thoughts for you!

    Hugs,
    Denise

     
    Old 03-17-2006, 08:26 PM   #12
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    Re: back from my trip to see dr crist...lots of news and questions

    Hi Maureen,

    Thanks for the encouragement and info.

    Funny thing is I'd had a peculiar feeling that my blood was "sticky" but I just told myself that that was ridiculous. I'd never heard of Lyme causing thickening of the blood, in fact I didn't even know such a thing was possible. Just goes to show you that you should listen to intuitive guidance.

    I've got an app't on Monday so I will ask about it then.

     
    Old 03-18-2006, 07:21 AM   #13
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    Re: back from my trip to see dr crist...lots of news and questions

    Dear Tinuviel,

    I have read that beta sitosterol is a natural type product that can be used like the cholestryamine and maybe the questran too. I was taking it at one time but was really losing weight so I stopped. I have kind of stabilized now with the weight (115) so maybe I should add it again. Anything to flush the buggers out. I even want to say Dr. Burruscano talks about this product too.

    Maureen

     
    Old 03-18-2006, 04:49 PM   #14
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    Re: back from my trip to see dr crist...lots of news and questions

    Shanna,

    I'm so glad you got the info you did!!! You nailed the 2 main things I've always said were what helped me most. The heparin made SUCH a difference!!!!!WOOOOOOOOOOOOOOW!!!!!!!!!

    I'll go ahead and warn you.....your butt and gut are gonna be sore but nothing you can't handle and no biggee in the scheme of things anyway. I did several or so rounds of the heparin alternating butt and gut...would do one til was too sore then rotate. I can't even tell you how much it cleared me up! I can't remember exactly how it went but I'd do it for several months then take a break (just til I could sit) then do it again. I remember at first there was NO WAY I could give those shots to myself either...eeeeeek! First round I had a neighbor who'd give them to me ....maybe first couple rounds?? Then my dad did it for me later. I finally did get the hang of it though I've never been certain if it was the timing....as in I'd done other things and gotten myself to a certain point then that was the kicker or well...who knows?? I do know I've ALWAYS said that did more for me than anything!

    I would put the thyroid(t3) as second. Did the same with it as far as doing it for awhile, taking a break, then at it again. It did wonders as well!

    I guess to summarize what each did it seemed the heparin cleared my brain and the fog tremendously and the t3 gave my energy the boost it needed.

    Good luck with all and keep us posted!!! ....glad you had a safe trip too!
    cindy

     
    Old 03-20-2006, 07:40 AM   #15
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    Re: back from my trip to see dr crist...lots of news and questions

    thank you everyone for your warm and caring posts, they all helped to brighten my day. am feeling much better since coming of the antibiotics, nice to not be herxing 24/7. am keeping my fingers crossed that the "drug holiday" keeps on this track and i can use this time for the other treatments. will keep you all posted. hope you all have a good week, you're all in my thoughts and prayers.

    brid ~ i think you are so courageous as well, making the trip all the way from peru! wow...that's puts my "little" trip to missouri from wisconsin on a whole other scale. i sure hope your new llmd can help you out.

    kim ~ your doc is right on with those 3 p's...i have to keep reminding myself of those too!!

    marsha ~ i'm sorry to hear about the blood clots, those can be really scary. i sure hope that the new blood thinners will get rid of them and have your blood back to normal soon. let us know what your new game plan turns out to be this week....hope he has a great idea in your future so you can start winning this war. and thanks for the info on giving shots, nice to hear that the bruising isn't as terrible as i thought it would be. i will try to remember to rub it in afterwards, maybe that is what makes the difference.

    mickie ~ thanks for the advice on the shots. and of course thanks for the "pat pat pat" encouragement...was very sweet of you, it made my day.

    maureen ~ i'm really glad to hear that the flagyl is still treating you ok and that you're still able to keep increasing it slowly. "slowly but surely wins the race". keep me posted on how your'e doing. and thanks for the tip about the "extra" on the needle to wipe it off so as to lessen the irritation, will have to try that and see if it helps.

    tinuviel ~ sorry to hear the brain fog was doing you in that day, suppose it didn't help that i was writing the beginings of a novel with my post! hope today is finiding you a little better. as to your questions about finding out about the hypercoagulation, dr crist ran a special blood test that meaures the levels of (?) thrombin, and two other blood agents, sorry can't remember them right now. but it is a special blood clooting panel he runs on all his patients, if they show signs. i don't know what all the symptoms of it are, but some of mine he thinks thaat stem from it are super cold/numb/tingling hand/feet/arms/legs, feet and hands turning yellow and white to the point where i can actuallly see the blood flowing slowly back into them which sometimes takes 5 or 10 minutes for them to resume normal coloring after pressure is placed on them or such. also my servere herxes tipped him offf too, since too thick of blood can't get rid of all of it's toxins. hope some of this helps you out, do you think this might be something you have? if so i can look up exaclty what kind of test it is for you so you can ask your own doc. let me know. also good luck at the docs on monday, hope you get good news.

    jules ~ thanks for the kind words. you are a dear. i don't know much info about the questran protocol yet, but i do know that it is responsible for binding and ridding the body of fat soluble toxins. as i learn more in the next month when when i do start the protocol i can pass it on to you if your'e interested. by the way how are you fairing these days? know you have had some rough days recently. hoping you are feeling stronger. can i tell you that everytime i see your little quote of thumper on your posts, i smile and chuckle. your personality shines through every day and b/c of that i feel like i get a little pick me up from it. thanks for being so you.

    denise ~ thanks for reminding me that dr j talks about that, i will definitely have to go back and read that section in his book. and thanks for the "tough lady" comment, sometimes i feel like i am wlaking around like a weak kitten newly born, nice to see my walk from someone elses eyes occasionally.

    cindy ~ thank you SOOOO much for sharing your experience on the heparin and thyroid meds....it really gives me such hope for my new battle plan. maybe this will be just what i need to recover and get my life back. i am very happy to hear that this was the case for you. i start the heparin sometime this week and then late next month dr crist is planning to start me on the thyroid meds, will keep you posted on how it goes.
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