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    Old 03-22-2006, 12:40 PM   #1
    ZZZ16
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    New to board, and ?s for pts of Dr. Crist and others who have input

    Hi everyone!
    First I am so sorry that we all have to be a part of this club. You all seem like a great community and have such a wealth of knowledge. I am hoping you can help me in answering some questions I have. I am newly diagnosed as of two weeks ago. I saw Dr. Crist last week, and with so much information being thrown at me, I have a lot of unanswered questions and questions about if I'm on the right tx plan. If you have time to read, please share with me your input/insights.

    I am 32 years old and live in Chicago. I think I contracted LD and possible coinfxns 1 year and 9 months ago. Symptoms have been present x 1 year. Here is my symptom list – mainly in order of progression: (many of these are random and will come and go)or disappear completely). Persistent symptoms have an *.

    Corneal ulcer (1st symptom – August ’04)
    *Cold hands – rt hand especially
    *Burning sensation in forearms, randomly on calves/upper arms
    Cramps in palms
    Weakness in hands
    Heel spur, pain in feet – mostly in the morning
    Headaches
    *Off balance, vertigo
    Back pain
    Neck stiffness
    Frequent urination
    Nausea
    Stomach pain
    Feels like my heart is racing even if I’m just lying in bed
    Sinus Infections
    Night sweats
    Burning sensation in head
    *Short-term memory loss
    Difficulty thinking of words, misspeaking
    *Ringing in ears – mild, mostly at night
    Nipple pain – red dots on rt breast
    Stiffness of hands
    *Arthritic feeling in hands, elbows, wrists, knees
    Swollen feeling in hands
    Sensation of vibrations through my arms (although can’t see it) at night; sometimes wakes me up
    Thinning hair
    *Twitches in muscles – 1-2 second duration
    Symptoms worsen during menstruation
    Symptoms flare or totally resolve

    I feel like 95% + of myself. Since I have neurological, muscle and joint involvemnt, I am obviously very concerned. Dr. Crist put me on 100 mg Doxy 2x/day, and after 3 days I went to 200 mg Doxy 2x/day. It has been 6 days, and I haven't felt a thing other than very mild nausea for a few minutes yesterday. Should I have felt something? I think I reaad you should herx at the beginning, and then every 3-4 weeks.

    Do you think this is agressive enough? Reading everyones posts, it seems people are on combinations and IVs at the progression I'm at. I think his reasoning with Doxy was it targets Lyme and 4 coinfxns. I wasn't tested for coinfxns, and he said to save my money, but seems most of you have tested or continually test with your LLMDs.

    He did say he'd put me on IV any time I want. But I don't feel informed enough to make that decision. I basically want to kill as many as possible, and have the best chances.

    What does the Doxy target - neuro, joints or tissue, or all?

    Feeling ok now, I just feel so desperate to get on the right track so not to progress much further, especially arthritically.

    I am also taking 15 billion acidophillos/lactobacillus 2x/day, sarch boulardi 2x/day, activated charcoal 4 caps/day, multivit, flax/borage oil, and have been following no sugar/flour/starch/alcohol, organic diet.

    Thanks for reading this far and for helping me in time of desperation!

    One more thing - do Dr. C's patients and others feel comfortable calling LLMDs office with questions from time to time?

     
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    Old 03-22-2006, 12:43 PM   #2
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Also, I have been taking detox baths every night - 1 c Epsom, 1 c baking soda, 1 c hydrogen peroxide while skin brushing. Then wrappiing myself in towel and sweating for 20 more minutes. Honestly, not really sure what it does, but wanted to make an attempt to detox. AFter the baths, I feel pulsing down my spine into my sacrum.

     
    Old 03-22-2006, 01:00 PM   #3
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Hi ZZZ:

    Welcome to the lyme board. I am sorry you have to be here too. I know you are in very good hands with Dr. C. I don't see him, but I know there are many here who do. If it were me and I had concerns I would have no qualms about contacting my LLMD with questions. This board is a great place to come for support and help. In my non-medical opinion, you are going to need more than 400mg of doxy, but who knows. I think you sound like you have your bases covered with the pro-biotics and vitamins.

    I also have neurologic, joint, and cardiac involvement. I started at 200mg doxy and around day 4 I started to herx pretty bad. burning sensations, tingling and really bad tremors-BUT, everyone is different and not everyone herx's. After a month I switched to Ceftin which seemed to help more with the neurologic stuff for a while, but then I felt like I was just holding my own. I finally found an LLMD in MN and last week he upped my Ceftin another 1000mg and added Ketek. I am herxing again now and it has been4 days.

    This is such a great board with wonderful, helpful supportive people. Feel free to throw out any questions you have.

    I am sure you are on your way to better health...

    Frango

    Last edited by Smyle; 03-22-2006 at 01:02 PM.

     
    Old 03-22-2006, 01:01 PM   #4
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    HI ZZZ16,

    I am not an expert. I am going through the same things myself. I just wanted to welcome you. Sorry you have to be here but it's a great place to learn, vent, and share.

    I just got Dr. J's book yesterday and have just started reading. I am not sure about any treatments but others who can help should be along.

    The detox baths are a good idea. Many here do them and I just started them.

    I have been told that herx's vary a great deal.

    Hope you start to feel better..deb

     
    Old 03-23-2006, 04:25 PM   #5
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Dear ZZZ16,

    Welcome to the boards.

    I started seeing Dr. Crist last October and have been back for one more visit. I was diagnosed for 4 years with MS by a neuro but at 52 knew I was too old for this plus there were no tests that proved it. Also my symptoms have been 24/7 for over 5 years now which is not typical for MS. And believe me there were lots of tests. After having blurry vision about 18 months into this I was told it's MS for sure and was given 1,000mg steroids for 4 days and that was my downfall. I ended up in the ER with severe heart palps. It has been complete decline since and the bacteria has really taken hold.

    I had to search for myself and discovered lyme thru a friend's daughter. I had negative test results thru both labcorp & quest with only bands 23 - 25 showing positive so of course no meds. After searching high and low I found an Infectious Disease doctor who didn't think it was lyme until he listened to my heart and agreed to put me on an IV of rocephin. I was making small strides when my liver enzymes jumped from 40 -743 so he pulled the picc-line and put me on oral doxy which did nothing.

    I tried natural but my husband was having a meltdown over my decline so I agreed to see Dr. Crist. We drive there from Dallas (8 hours). Like you I was blown away with all the paperwork (novel I call it) but felt I was if nothing else in very informed hands. He didn't even see the need for more testing but I requested bloodwork be sent to Igenex and I had many more positive and IND bands show but not enough for the CDC. Dr. Crist then interpreted the test for me and is 99% sure it's lyme. Good enough for me. Doxy I believe is the first drug of choice but having had the IV and the doxy I was given combos of Clindamycin/Quinine to be switched every 10 days with Biaxin/Plaquenil for a total of 50 days and then I was given a month of rifampin (believe it or not a TB drug) because he believes I have bartonella. After this I saw him and he was concerned that I hadn't made progress and talked IVs but I still owe the ID doctor for the first IV. I have been paying for over a year but got caught between 2 deductibles for a total of $5,000 plus my part of the cost. Dr. Crist put me on 4 months of flagyl and when the people on here talk about it being a bugaboo believe me that is what it is. It is majorly kicking my butt. He even said sometimes you can only take a sliver every couple of days. I have gotten up to 3/4 twice a day but may have to cut back. I press forward with the hope the more I take the quicker I'll get better but I know Dr. Crist keeps saying the tortoise wins the race so I think I may have to cut back. It's just too hard on my system. Not sick, just really arthritic in my arms, legs, and hands. I have a major mobility problem and have to use a walker and even then sometimes my feet feel like they are nailed to the ground.

    His nurse had just prescribed cefuroxime for me (an oral rocephin) when I went to see him but he would rather I do the flagyl first and then the cefuroxime. If I have not improved by my next appointment I know I will do IVs. They really are not bad at all and I don't mind them but the cost will kill me. Thank God the ID doctor doesn't pressure for payment as long as you are consistent.

    This is may be more info than you wanted but I just wanted to assure you that Dr. crist knows what he is doing and as you yourself know people travel very far to see him. If you look up the threads for Romans you will see he has another patient almost in your neck of the woods. How did you find him by the way? Shanna (Romans) will tell you that he has a very large bag of tricks and will use them all if necessary. You can also read some of cind68's threads because she has known Dr. Crist for a very long time and speaks very highly of him. Although I seem to be feeling worse since treatment I am hoping it is the bacteria dying and passing thru my system. Good luck in your treatment and keep us posted.

    Maureen

     
    Old 03-23-2006, 07:14 PM   #6
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    hi zzz16, welcome to this board!! sorry you have lyme too, but we all are here to give support and help each other..i am on doxy for 3 weeks now, i started with 200 mg for 5 days, i felt nothing, then move to 300 mg and after a week,i starting to feel improvments, specially less fatigue, less pain in my legs and arms, less dizziness vertigo, less head fog, but really bad stomach discomfort, lots of nauseas.. i got one day fever in the morning and herpes on my lip..so i called my llmd and told me to swithc back to 200, my nausea dissapear after a couple of days but fog in my head, anxiety, muscle and joint pains came back... so toay i went back to 300 doxy, my stomach feels very good, and hopefully the next days getting back the improvment i had before..you just strarted, so is too soon to feel improvment, my llmd told me to stick with it 4-to 6 weeks, if a feel little improvment, to kee going.. i do think 200 doxy wont do anything..ask doctor crist if you can go 300,300 still low for lyme, but better than 200as far as my experience for me, 200 did nothing..i wish i could handle 400.. i will see how i do for a week at 300 and hopefully go to 400.. so be patient, stick to the doxy, but ask if you can go 300, always check your platelets and liver enzymes, every 2 wees is good..to make sure your liver enzymes are ok as well as platelets, thats very important, stick first to oral antibiotics, usually iv is when oral havent work for you, and you will know that after months, iv are very very very expensive, and you have to take lots of cares...good luck!!
    hugs

     
    Old 03-23-2006, 07:50 PM   #7
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Hi everyone, thanks for the warm welcome!

    I am still in panic attack mode having this stupid "infection". I don't like thinking of it as a disease. I am just trying to get on the right treatment plan. I do feel like the feedback on Dr. Crist is overwhelmingly positive, and that he is incredibly intelligent. I just don't feel comfortable with where I am at. It has only been 7 days though! So I have to slow down. 400 mg a day just seems low. I think I would feel better with a more customized plan for me...he just circled all the numberes on the medicine instuction page in order. Does he give the same order of meds to everyone? I took Zithromax for sinus infections in November, and was knocked out, which I now know is a herx. He knows that, so I wonder why I wouldn't start with that...do you guys know the reasoning? Maybe I should call his office tomorrow.

    I don't know what to feel. I am fully functioning, and most of my symptoms have been minimized since I started the strict diet a few weeks ago. So I can't discern if it's the diet, a cycle and will flare soon, or if the meds are helping. I don't think it's the meds yet.

    Betterdays, that is quite a story! So does this mean the symptoms are Lyme and not MS, and that they will go away? That is good news! How is your vision now?

    Brid- stupid question, but are you taking probiotics? Or enough? Just a suggestion, and I'm sure you already know, but make sure to buy refrigerated ones, otherwise they are not live cultures. Also, you may want to try Florastor, it's a probiotic, but it's a yeast - sarrchomyces boulardi - and is better able to withstand antibiotics.

    Good luck to all, and we will get through this!!

     
    Old 03-23-2006, 08:16 PM   #8
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    hi zzz16

    yes, we need to be patient, i was until 8 months ago a extreme active person, so in to work, sports, now i feel tired only walking 4 blocks!!is really frustrating...i try not to think i have a disease, just a condition and will disapear...about herxes, i was very concern about it when i went to doctor cameron, and he said, and my doctor too, not everybody herxes..and there are different way to herx, dot doent mean you are not killing the bacteria.. the only way to know, is just feelimg better.. he said 2 out of 10 peolple herx..if you ask me if i have herx, i would day no, unless the ehrpes i had and the fever was a herx... but that was only one day, and i did feel improvment when i was on 300 mg, at least for 4 days i felt better.. but went down beause i went back to 200...so dont worry if you dont herx... you dont have to...and the probiotics, is not a stupid question at all!! actually you just remind me that i spoke with my doctor today and i forgot to ask him if i should take probiotics..i think will be a good idea to take them, since antibiotic kills the good bacteria, i will call him tomorrow to ask and will let you know..you anxiety is normal, until 8 days ago i was taking xanax everyday... when i had the improvment with the doxy 300, my anxiety decreased a lot! but yesterday came back, but i have try not to take xanax..hopefully the next days i will improve now that i am back in the dosis and anxiety will decrease too, the last 2 night i have had night mares and havent sleep really,.. waking up every 45 min...so just give it sometime to the medicine, if it works for you, you will only know if your symtoms improve, and thats beetween 4-6 weeks..doctor cameron also told me if i have a very little improve, thats a good thing, every little improve was a big deal..so i guess is all about waiting and being patiente, wich of course, i am not.good luck!! and keep going with the doxy..do you have stomach upset with 400 mg? thats the dosis i would like to have.. still think 300 is low..but doxy takes its time
    hugs!!

    Last edited by brid; 03-23-2006 at 08:19 PM.

     
    Old 03-24-2006, 07:52 AM   #9
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Hi Brid -
    thanks for the response! I DEFINITELY think you need to get on probiotics asap! That is likely why you have the stomach issues and intolerance to higher amounts of Doxy. Make sure though, to get the refrigerated ones, otherwise there are few cultures left. If the probiotics don't help, try the sarrchomyces boulardi (Florastor), the probiotic -yeast. I know we need to watch out for yeast, but this is a good yeast, not infectious. Dr. C gave the okay. I take both and I think that's why I am able to tolerate them. I have not had any stomach issues on the medicine. (I had extremem nausea for 4 monthis this fall). I too have the anxiety and nightmares. Waking up is the worst, everything comes back to me. I think once I am on a plan I'm comfortable with and have a good "team" helping me, I will feel better. I don't know what is going on, with feeling good lately. It seems too good to be true, but I will give it a full month before I truly think I am feeling better. I am suspecting that the diet really is helping me. I have always been a pretty healthy eater, but definitely would have a sweet tooth, and ate moderate amounts of even good simple sugars like fruit, and starches. Since I've stopped (along with alcohol, caffeine) and trying to go all organic, it has been better. So hard to tell what is going on!

     
    Old 03-24-2006, 09:19 AM   #10
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    hi zz, yes defiently i want to take the probiotics, i take complex b with c... i cant take yeast, makes since it inflamates my bladder, i use to take this complex b that had yeast and my bladder was sooo bad that i wanted to cry......as food, i eat everything, i dont feel food makes me feel seeker, but i dont eat for yeatrs meats, sodas, fake sugar,and many food with chemicals... i have institicial cystitis for years and like 7 years ago i gave up coffe, caffeine, fake sugars, lemon, and many things that makes my bladder suffer.......and i dont like meat...i eat organic chiken once in a while, i am not into any meat much...i try to avoid junk food, just lately once in a while have had the craving of kfc, but thats my only junk..will call the doctor in the afternoon to ask about the pro biotics...
    hugs!

     
    Old 03-24-2006, 04:17 PM   #11
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Dear ZZZ16,

    No I do not have MS. It's a long story but after falling a lot over the 4 year period a friend said maybe I injured myself and didn't know it and recommended an orthopedic surgeon for me to see. He said he really didn't think there was anything wrong with me he could help and maybe it was MS. He was concerned however about the 24/7 symptoms for over 4 years though and went ahead and ordered what for me was MRIs #5 & 6. Brain and cervical. He employs a neuro-radiologist who looked at the MRIs and said no way did I have MS. That was when I started really looking and trusting my instincts not the original neuro who obviously had tunnel vision and tried to say MS. I will thank my lucky stars that I went to that ortho for the rest of my life.

    My eyesight in the left eye is almost as good as the right but the best way to describe it is that what that eye sees doen't have as much light in it. It still gets blurry ocassionally but we all know lyme bacteria loves the viscous material of the eye so I am sure that's the problem. I just hope when I beat the lyme it goes back to normal. Dr. Crist did give me eyedrops and I am ashamed to say I haven't used them yet because after the steroids I am just kind of freaked out about the vision thing and afraid to put anything in my eyes. Maybe they would really help but I have to talk myself into it.

    Maureen

     
    Old 03-24-2006, 04:44 PM   #12
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Maureen-
    I am going out on a "date" with my hubby in a minute, just wanted to quick reply about the eye drops. My very first symptom was a corneal ulcer - it felt like something like sand was in my eye - and the opthamologist said bacteria was attacking my eye! I had to take antibx eye drops every 15 minutes for 3 days straight! It was freaky, but has not returned. I do notice my vision not as clear, but mostly normal. Dr. C did not mention eye drops. Do you know what these are? Will write more later....
    Lisa

     
    Old 03-25-2006, 05:20 AM   #13
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    lisa...just wanted to say welcome to the borad and put my 2 cents in.

    bear with me though, i'm not feeling to with it this morning, brain is prety foggy so i think i'll just skim throuh and tell you to look on th info status thread at the top of the forum (the sticky posts) if you're interested to read my whole story wish allso started with vision issues, as in i went blind for a few days. in it it detaisl my treatment with dr crist. i travel from wi to mo to see him every 6 months. it's a trek, very hard given my health but it's a must..... i absolutely have put all my fiath in him, without him i would be sitting here with a diaagonis of MS and getting worse by the day. as it is right now i am totally disabled and unable to work, drive, or hangele going out most places unlsee i have a chaperone to help me around and keep me focused. daily life is still such a struggle despiste iv's and orals for a year now. but i keep in mynd that i am not bedriden anymroe and i have made some other samll steps along the way. i just went and saw dr crist last week and ym lyme treatment is now on hold to tackle 2 other problems i am hving due to the lyem that need to be resolved asap ~ hypercoagulation and hypothryoidism. dr c thinks that maybe mid summer, early fall i can begin traetment again. i hope he is right.

    but anyway whatever treatment plan you are on, wheter it be with dr c or not i can tell you one thing, you have to believe it will work and have utter faith in it completely. it is hard to keep thinking poisitive but it is so important to try to do it. with lyme it is a long road to getting ewll but we will get there. it is good to hear that you feel 95% of your old self, that's amazing, but i know you are anzious to get back to 100. and you will, just keep putting one fort in front of the thother. i hope your road will be short and you will see improvemetns very soon. oh and as far as herxing, everyone is different in that regard. many seem to have a patterrn or 3 or 4 weeks, some seem not to herx at all, and others like myself herx constantly no matter pulsing or lowering amounts of the rx's. hang in there and keep us posted. i hope some of thishelped you out. take care and keep posting.

    shanna
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    Old 03-27-2006, 07:51 AM   #14
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Maureen - thank God for the orthopedist!! I think it's funny, b/c a friend's fiance who is a thoracic surgeon, put me on the right track while he was drunk at a wedding! We joke that 10 specialists and a million tests couldn't help me, but he could!

    Shanna- I will read your story. I am glad to hear you are improving, albeit slowly. I totally agree with what you are saying about believing in it 100% and being positive. I think that is a lot of the battle too. There's something about my visit with Dr. C that I am not completely comfortable with my plan yet. I am going to call today to clarify and ask some questions, so I think that will help. He was extremely knowledgable and I know he knows what he is talking about. I just have a concern that my plan isn't as individualized as his other patients. It seems that you and Maureen's are more customized. Does this come with time? Did he start you on the oral Doxy too and just go down the list? I just feel like it has just recently spread all over my body and I want to be aggressive so it doesn't get worse. I guess we all feel this way! BT, did you do the hypercoag test, the CAVITAT and the other tests on the list?

     
    Old 03-27-2006, 09:20 AM   #15
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    Re: New to board, and ?s for pts of Dr. Crist and others who have input

    Quote:
    Originally Posted by ZZZ16

    Shanna- I just have a concern that my plan isn't as individualized as his other patients. It seems that you and Maureen's are more customized. Does this come with time? Did he start you on the oral Doxy too and just go down the list? I just feel like it has just recently spread all over my body and I want to be aggressive so it doesn't get worse. I guess we all feel this way! BT, did you do the hypercoag test, the CAVITAT and the other tests on the list?
    i completely understand your feeling and need to want to hurry. i was that way too. but i will say this, that dr c assured me that lymes grows very slowly so that by giving orals a chance to work will not endanger you to getting worse fast. but if you do start feeling increasling worry that things are spinning out of ontrol, do tell dr c. i know he is very open to what his patinets need and are feeling, so if iv's are somthing you want to consirder right away just make sure you tell him. from what i know over the year of working with him, he likes to start on orals (i also started on doxy too) and see how it goes. and there is a defintie plan of attack that he's laid out in general for his lyme treatment, based on all of his experience with many many patients. but he does customize it as needed, like for me when i continued to get worse and worse when i was on the doxy he moved me right to iv's, then when my insurance pulled them it was back to orals. even so with all my bad herxes we skipped around alot on the orals but nothing worked even at low level pulsing, so now i am on drug holiday trying to work out the kinks in the overall puzzle so that in a few months i can go back in and kill some more keets. as to all the testing...i did the ingex lyme igg and igm, plus the hypercoagulation and the one (forget the name) that tests brain transmitter levels like seratonin, etc as neruo stuff was and is my biggest problem. even though my coagulation test was abnormal at the time a year ago we couldn't afford to do more than attack the lyme first, because we had to do that plus the neruotranmitter protocol b/c my levels were almost non existant at that time. but my advice is do what you can when you can and trust that it's enough for the moment, always along the way you can add more if it helps you fight along the way.

    sorry this turned out so long, but hope i answered your questions. hope your call to dr cs staff goes well and they can calm and help sort things out a bit for you.

    shanna

    (ps...if you do want to read my story, it's on the last page of the info status thread, although as i was rereading it had a lot of brian frog that day apparently and left out some stuff and it's not up to date, but you do get the picture though)
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    Last edited by Roman77; 03-27-2006 at 09:27 AM. Reason: added info

     
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