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    Old 08-16-2007, 05:49 PM   #1
    Avalou
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    New News

    Hi Guys;

    You recall in the other thread I said that Dr. C. was going to have a "confirmation" test done. I called Igenex to find out first hand what this means. They said when a blood sample is sent to them, they keep that sample for three months, and during that three months if the Dr. wants to order more tests on that sample, they can do so..

    Apparently, this is what my Primary Dr. C. ultimately did. So today I received the following note from Dr.Cs assistant J..

    Hi,

    Further news... your test came back negative. Dr. C and Dr. V and I discussed it in depth yesterday. From all the analysis of the various bands and whether they were positive or negative (on both your original tests), Dr. C. believes it's likely that the original positive result was due to cross-reactivity with viruses. This is the main reason for false positives. He is pretty convinced you do not have Lyme. Whew! He is still supportive of the idea of you going to Dr. A.

    However, thinking back to how good you felt after going on Tinnidazole, it could be that the ameba hystolitica was the real problem. Dr. C. wants to have you re-test on that. I left a kit and note for the receptionist last night to please complete the requisition info and leave that kit for you at the front desk. It is saliva only this time, not stool, since the test is for antibodies to the ameba. If it comes back positive, that means we didn't get it, and we would put you back on a regimen of Tinnidazole and perhaps something else to see if we can finally eradicate it. Probably would use some psyllium or other soluble fiber, too, to get the med to go deeper into the folds of the bowel lining.

    Take care--We are closer than we've ever been, even though we don't know for sure which organisms or organisms are the root problem.
    Take care,
    J

    ME AGAIN---This sort of threw me for a loop. How accurate are the Lyme Tests? They used the exact (Same) blood, and came up with two different results. or is there more to this story than what I'm seeing at this stage. I called Igenex, and they had me leave a message for a call-back from a Dr. S. or a Dr. H. In the meantime, I thought I would run this past you guys, to see what you think.

    Oh, and I called the specialist (Dr.A) whom Dr. C. had referred me to before the "confirmation" test came back, and Dr. A. said it doesn't matter what this "confirmation" test says, according to the first IGG test, and my symptoms, I am definitely Positive..

    Soooo, if I want to be treated for Lyme Disease, it looks like I might have to change doctors. Orriginally, Dr. C. was going to continue being my Primary, and Dr. A. was going to make reccommendations; but I'm not comfortable having two doctors with differeing diagnosis's.

    Here is the starting protocol given to me by the specialist. He said he treats 5 to 7 Lyme patients per day. He wants to see me in one month to go over my (Many) blood tests.

    Tinidazole--start with 1 capsule once a day, and work up to 2 capsules 2X a day.

    Cortef--for the Adrenal Insufficiency. He muscle tested me as allergic to it; but then he said he cleared it??

    Cholestyramine Powder---Start it really slow.

    Glutathione---start with 1cc IV (I need to find out how often)

    Coloidal Silver--2 to 4 ounces per day

    Alliultra---Start with 1 drop (or less) per day, and work up to 12 drops per day. I am to order this online.

    Thyme w/Thymol; Clove; Mountain Savory; Oregano

    Lauricidin---Start with 1/4 tsp. and work up to 1 tsp. 1 to 3 times per day.

    Lugol Iodine--I think this if for my Hashimotos/Hypothyroidism.

    Dr. A would like me to see this guy in Spokane who does Rolfing. According to the internet, a "Rolfer" is someone who does soft tissue work. I already see H. who does soft tissue work--I will ask H. if this is the same thing. If it is, it's definitely helpful.

    Dr. A would also like me to see someone who does the Jaffe-Mellor Technique---or Neuramodulation Technique. I don't have a clue what this is.
    He would also like me to see a (Homeopath) named R. F. in Reno at least once.

    He wants to get my allergies cleared up--which would help immensely if I'm going to tolerate all of this stuff he wants me to take. I'm allergic to (So) much stuff. Somewhere in the midst of all of this he mentioned a way to clear up the allergies---I kind of forgot that part, and will have to ask him again when I see him next month. I have to go in person one more time, and then I can do phone consults.

    Dr. A. also reccommeded 4 books he would like me to get. One is on Cortisol, one on Mold, one on Adrenals, and one on Matrix Entergetics--I don't have a clue what that is.

    Dr. A. also wants me to get an EMF Cellsensor Meter, a Stetzrelectric Meter, and an Infrared Sauna

    I had a Whole (Bunch) of blood tests done, along with a urine specimen. He is also having me do a separate blood test to try to determine how much of this is familial. He also wants me to do saliva and hair tests.

    He wants me to have a liver panel done once a month--ALT, AST, & GGT

    I am also to continue all meds and supplements that I'm already on from Dr. C.

    Does this sound at all like the kind of doctor I need to see for Lyme Disease??

    I'm sorry this is so long--does relating these things get easier, and take less time as we go??

    Thank You;
    Ava

    Last edited by Avalou; 08-16-2007 at 05:51 PM.

     
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    Old 08-16-2007, 07:18 PM   #2
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    Re: New News

    Hi Ava. Definitely get copies of your test results.

    No test is completely reliable. Regarding the Western Blot, the CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme.

    Tindidazole is a good med. It treats the cyst form of Lyme. This may be why you noticed improvement on it. It is my understanding that it needs be taken in conjunction with another antibiotic, and you have not been prescribed another antibiotic with it.

    I am not familiar with the other things the doctor wants you to take.

    I recommend that you see one of the Lyme doctors for their opinion. You also need to be tested for all the co-infections. Many Lyme doctors believe they need to be treated first for Lyme treatment to be effective. This was true in my case. If you do have co-infections, Tinidazole is not effective for them.

    Good luck!

    Last edited by ticker; 08-16-2007 at 07:18 PM.

     
    Old 08-16-2007, 09:55 PM   #3
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    Re: New News

    Hi Ticker;

    The specialist (who treats 5 to 7 Lyme patients per day) had me do a lot of blood tests. I don't know if they are the kind you are talking about though.

    He had me get a DetoxiGenomic Profile.

    Then he marked the following things on the other sheet. Alpha MSH--ANA w/reflex--C3a*--Cardiac Eval.--CBC--Chenistry Profile--Custon Thy Panel--DHEA-Sulfate--ESR--Estrodial--Estrone--Growth Hormone--HLA DQ Olgotyping*--HLA DR Olgotyping*--IL-6*--Indicans Urine--Insulin, fasting--Iron Deficiency Panel--Leptin*--Megalobl. Anema--MMP-9*--PAI-1--Pregnenolone--Progesterone--Testosterone--Thyroid Auto AB--TNF*--Urinalysis--VEGF*--Vitamin D 25-OH--Vitamin A--CMV Igg & igm--HHV6 Igg & Igm--Reverse T3 57.10 Igg Igm IgF-1

    I'm not sure I copied those last ones exactly right--he hand-wrote them at the bottom of the sheet, and his handwriting is that of a doctor for sure.

    Are any of those the tests you are talking about? If they are, maybe he will start me on other antibiotics for them when he gets the results back.

    I do have, and will keep, copies of my Western Blot tests.

    Thank You;
    Ava

     
    Old 08-17-2007, 05:44 AM   #4
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    Re: New News

    Hi Ava. It looks like most of these tests are hormones, iron, vitamin levels, and a complete blood count. I do not see the co-infections listed. I wonder if he tested for them separately?

     
    Old 08-17-2007, 08:04 AM   #5
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    Re: New News

    Quote:
    Originally Posted by ticker View Post
    Hi Ava. It looks like most of these tests are hormones, iron, vitamin levels, and a complete blood count. I do not see the co-infections listed. I wonder if he tested for them separately?
    Hi Ticker;

    From reading between the lines, it would appear that neither my Primary, nor the "specialist" he sent me to, are actually LLMDs. At least the "specialist" says I have Lyme Disease, while the Primary says that I don't.

    But, unfortunately, the "specialist" didn't order the co-infection tests, (the tests I put in my other post were all the tests he ordered) And also he wants to put me on Cortef/Hydrocortisone--which I looked up on the internet, and (if I'm understanding accurately) it is a steroid, and from what you and others have said, it's not good for Lyme patients to take steroids--maybe that's why I reacted so badly to it a few years ago when my Primary put me on it. I only took it for a few days, because I was deathly sick from it. The "specialist" seems to think he can "clear" my body so I can take it???

    Ok, I'm getting the message. I know you gave me an LLMD referral in California; but my husband is totally dragging his feet about going into any big cities there, because he hates driving in (unfamiliar) large cities with heavy traffic, and the pollution in cities that size decimate him, and I can't drive there myself. I wish Dr. Harris hadn't closed his office in Nevada City, Ca.

    Anyway, is there some way to find out if there is a (really) good LLMD in Washington State, Nevada, Utah, Idaho, or Oregon? He would be comfortable accessing any city in any one of those states, because he has driven in them a number of times, and is therefore comfortable about driving in them--even if the pollution makes him a little spacey. Or is there one in Vancouver, BC.??

    Thank you for your time.

    Blessings;
    Ava

     
    Old 08-17-2007, 11:00 AM   #6
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    Re: New News

    Hi Ava. Why does the doctor want you to take steroids? They are not good for people who have Lyme. They suppress the immune system and can make symptoms worse.

    Unfortunately there are not many Lyme doctors. I do not know of any in the states you list. See if you can find a Lyme support group in your state. They may be able to recommend someone.

    There is a Lyme doctor in New Hope, BC but I do not know how knowledgeable he is.

    I know it is difficult to travel, but your health is the most important thing. Some doctors will spread out appointments and/or do phone consultations for people who have to travel to see them.

     
    Old 08-17-2007, 03:32 PM   #7
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    Re: New News

    Ava, there is an LLMD in Vancouver BC Dr. Ernie Murakami, and one in the Tri-Cities-- Dr. Ames. that's a little easier to get to than BC especially in the winter time, having to cross Snoqualmie or Stevens Pass, isn't always easy, and if they close them, or require chains then you have to deal with that too. (I'm from Moses Lake)
    I Don't personally know anything about either doctor, just know that they are LLMD's. And they are closer than CA.
    As for the Cortef. I had been refusing to take it for my Addison's, because it is a steriod and didn't want to make my Lyme worse. But my adrenals got to such a serious state that he said I had to take it, just 5mg a day. After starting the Cortef I started having such horrible leg and knee pain that I couldn't walk. I stopped taking it, leg and knee pain went away about a week after I stopped the Cortef. But I am taking DHEA and pregnenolone for the Addison's, and don't seem to be having a problem with them. Sarah

     
    Old 08-17-2007, 05:38 PM   #8
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    Re: New News

    Quote:
    Originally Posted by ticker View Post
    Hi Ava. Why does the doctor want you to take steroids? They are not good for people who have Lyme. They suppress the immune system and can make symptoms worse.

    Unfortunately there are not many Lyme doctors. I do not know of any in the states you list. See if you can find a Lyme support group in your state. They may be able to recommend someone.

    There is a Lyme doctor in New Hope, BC but I do not know how knowledgeable he is.

    I know it is difficult to travel, but your health is the most important thing. Some doctors will spread out appointments and/or do phone consultations for people who have to travel to see them.
    Thank you Ticker. I will check for support groups in all of the places I listed.

    I stopped by the doctor's office today, and picked up a copy of the latest test that he says means I don't have Lyme Disease--though I believe that I do.

    Like I mentioned before, it came from the very same blood that tested Positive before. Here is what it says--

    IGG 30/31 CONFIRMATION NEGATIVE

    This test determines whether bands present at position 30 and/or 31kDa on the IGeneX Lyme IgG Western Blot are specific for B burgdorferi.

    Serum from the patient is tested against a Western Serum from the patient is tested against a Western Blot strip with two fixed B burgdorferi specific recombinant antigen fragments.

    IGeneX interpretation is based on internal validation studies performed on well defined Lyme patients: 67 positive and 161 negative. The assay sensitivity is 95% and specificity is 98% for late Lyme.

    Limitations: Positive results for the 31kDa band may be present after vaccination in uninfected persons. The Lyme 30/31kDa Confirmation Test specificity was >97% in a viral positive panel.

    BAND INTENSITY:
    NEGATIVE---No visible bands present.
    POSITIVE---If intensity of band is equivalent to or stronger than the weak postive control.

    Do you have any idea what all this means Ticker?

    I honestly don't know if I have the energy to try to figure out what to do, let alone do whatever it is.

    Thanks;
    Ava

    Last edited by Avalou; 08-17-2007 at 05:39 PM.

     
    Old 08-17-2007, 06:16 PM   #9
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    Re: New News

    Quote:
    Originally Posted by sarah92202 View Post
    Ava, there is an LLMD in Vancouver BC Dr. Ernie Murakami, and one in the Tri-Cities-- Dr. Ames. that's a little easier to get to than BC especially in the winter time, having to cross Snoqualmie or Stevens Pass, isn't always easy, and if they close them, or require chains then you have to deal with that too. (I'm from Moses Lake)
    I Don't personally know anything about either doctor, just know that they are LLMD's. And they are closer than CA.
    As for the Cortef. I had been refusing to take it for my Addison's, because it is a steriod and didn't want to make my Lyme worse. But my adrenals got to such a serious state that he said I had to take it, just 5mg a day. After starting the Cortef I started having such horrible leg and knee pain that I couldn't walk. I stopped taking it, leg and knee pain went away about a week after I stopped the Cortef. But I am taking DHEA and pregnenolone for the Addison's, and don't seem to be having a problem with them. Sarah
    Thank you Sarah. We used to live in Moses Lake for about five years, now we are in Spokane.

    Dr. Ames is the one I am seeing that wants me to take Cortef/Hydrocortisone. I am afraid to take it, because I took it several years ago, and it made me (Really) sick. I just don't have the energy for that kind of sick right now.

    I guess I'm feeling a little overwhelmed, because Monday was the first time I saw Dr. Ames, and he talked fast for an hour straight while I took notes. There is (SO MUCH) stuff he wants me to get, and to do. I compiled the list from my notes when I got home, and ordered some of the stuff. I have so many allergies, how will I know what I am reacting to???

    Then Wednesday I had to make another 6 hour round trip down there to get blood tests that Dr. Ames had ordered. It took being poked 4 times, and some digging to get the blood they needed (I'm always like that), and I'm not a baby about things like that; but it just took more energy that I don't seem to have.

    Then yesterday I got a note from my primary doctors' assistant telling me they ran a "confirmation" test on the same blood that they had gotten the Positive results on, and it was Negative--so they said I don't have Lyme. I called Dr. Ames, and he said it doesn't matter what this second test says, I have Lyme Disease, because the first IGG test was even Positive according to CDC standards, and I have a (lot) of the symptoms.

    I've been fighting health problems for about forty years, and I've done everything I could to get better; but I didn't, and I never would have suspected Lyme Disease, so I just don't know that much about it. Dr. Ames had me get four books--that I don't have the energy to read, and even if I did, I know I wouldn't remember half of it. They are about mold, Adrenals, Cortisol, and something called Matrix Entergetics.

    He wants me to see about 4 other practioners, and buy a special kind of sauna, and two kinds of meters to check things in the house. And some other things, and I just don't seem to have the energy.

    I'm sorry to go on so--I'm actually a pretty positive and strong person; but I just feel like I've hit a wall.

    Thank you for your input.
    Ava

     
    Old 08-17-2007, 07:06 PM   #10
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    Re: New News

    Oh I am bummed to hear that Dr. Harris closed down his office in Nevada City...shoot!

    Ava you had a positive with the CDC...I just don't see how that one doctor can say you are a false negative. Shame on him.. Hope you get to a GOOD Lyme specailist and get the proper treatment!

    Good Luck!

     
    Old 08-17-2007, 07:25 PM   #11
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    Re: New News

    Hi Ava and welcome.

    I remember the frustration of going from doctor to doctor and getting blood taken and waiting for the results then trying to interpret the results.

    You'll get through it.

    The best thing I did was to see a Lyme Literate Medical Doctor (LLMD). I've been seeing her for almost 3 years.

    She sent my blood to Igenex and my results came back positive - I even meet CDC requirements.

    My treatment has run the gamut from orals to natural tinctures to I.V. drugs. But the good news is that I feel much much better now!!

    There is not one drug that works best for everyone, and if you take your test results to 7 doctors you'll get 8 different opinions.

    The one thing that I like about my LLMD is that she treated my symptoms before we even had the test results in our hands.

    I wish you well. Try to learn as much as you can - knowledge is power.

    Peace and health to you,
    Mickie

     
    Old 08-18-2007, 06:29 AM   #12
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    Re: New News

    Hi Sarah. I believe that if you are taking Cortef for adrenal issues, it is okay because it is something your body should have. I think this was addressed at the recent Lyme conference. I will check my notes.

     
    Old 08-18-2007, 06:30 AM   #13
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    Re: New News

    Hi Ava. I do not understand the significance of them testing Band 30 and 31 only.

    Did you have a Western Blot done at IgeneX? Do you have results from the test?

     
    Old 08-18-2007, 10:32 AM   #14
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    Re: New News

    Ticker, yeah, I was at the point where the need outweighed the risks, but it really caused horrible, leg pain. I'm talking the worst pain I have EVER felt. I'd give birth again before I'd want this leg pain back! they gave me a demerol shot in the leg and it didn't faze it. The only thing I can come up with is it started when I started the Cortef, and it went away when I stopped. I have an appt. next month with endo, I may try again then.
    As for the rechecking of the 30 & 31 bands. On the most recent IGeneX kit I ordered (June 2007 edition) It's says in red ***NEW*** Please check if confirmation is to be performed on W Blots with 30-31 kDa = bands. I had never seen this before, and assume that this is what Ava's doctor is talking about. I guess they keep the original sample and retest for confirmation, but only of these two bands. Don't really know what the significance of this is. Dr. J said that the 30 & 31 bands are Lyme specific. But 30 isn't even a double starred band on the IGeneX test. Dr. Harris told my husband that 34 kDa is the last Lyme specific band to show up, and that helps deterime a very early infection from a later one. I guess I'll call IGeneX next week to try to get an explanation about this 30/31 confirmation. If there are other Lyme specific bands psotive, I don't see why they would need to confirm with only 30/31. But I'm not a doctor, sooo. Sarah

     
    Old 08-18-2007, 11:17 AM   #15
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    Re: New News

    Quote:
    Originally Posted by Avalou View Post
    Thank you Sarah. We used to live in Moses Lake for about five years, now we are in Spokane.

    Dr. Ames is the one I am seeing that wants me to take Cortef/Hydrocortisone. I am afraid to take it, because I took it several years ago, and it made me (Really) sick. I just don't have the energy for that kind of sick right now.

    I guess I'm feeling a little overwhelmed, because Monday was the first time I saw Dr. Ames, and he talked fast for an hour straight while I took notes. There is (SO MUCH) stuff he wants me to get, and to do. I compiled the list from my notes when I got home, and ordered some of the stuff. I have so many allergies, how will I know what I am reacting to???

    Then Wednesday I had to make another 6 hour round trip down there to get blood tests that Dr. Ames had ordered. It took being poked 4 times, and some digging to get the blood they needed (I'm always like that), and I'm not a baby about things like that; but it just took more energy that I don't seem to have.

    Then yesterday I got a note from my primary doctors' assistant telling me they ran a "confirmation" test on the same blood that they had gotten the Positive results on, and it was Negative--so they said I don't have Lyme. I called Dr. Ames, and he said it doesn't matter what this second test says, I have Lyme Disease, because the first IGG test was even Positive according to CDC standards, and I have a (lot) of the symptoms.

    I've been fighting health problems for about forty years, and I've done everything I could to get better; but I didn't, and I never would have suspected Lyme Disease, so I just don't know that much about it. Dr. Ames had me get four books--that I don't have the energy to read, and even if I did, I know I wouldn't remember half of it. They are about mold, Adrenals, Cortisol, and something called Matrix Entergetics.

    He wants me to see about 4 other practioners, and buy a special kind of sauna, and two kinds of meters to check things in the house. And some other things, and I just don't seem to have the energy.

    I'm sorry to go on so--I'm actually a pretty positive and strong person; but I just feel like I've hit a wall.

    Thank you for your input.
    Ava
    Ava, sorry you are going through all of this, yes I understand how overwhelming it can be. My first appt. with my LLMD was like a whirlwind. I felt like it was that timed dating thing where you get five minutes to say as much as you possibly can, and then it's over. If it was me I would listen to Dr. Ames, not a regular doctor, he is the Lyme expert, so many other doctors don't really understand what they are doing. Also, talk to Dr. H at IGeneX, he has the most knowledge about interpreting the test results, find out what he has to say about your results. did they only do a confirmation on the 30/31 IGG and not the IGM? Were you CDC positive on both IGG and IGM? A CDC positive IGG is very hard to get, I don't see how that would be posible if you didn't have Lyme! My husband's IGeneX IGM is CDC/IGeneX pos, but his IGG is CDC/IGeneX neg. he has a neg 30 and an IND 31, and Dr. Harris said that he has Lyme disease. My son's IGG 30 is neg. and 31 IND (same as husbands) and he sees Dr. Jones and has been being treated for Lyme by Dr. Jones for 10 months now. Dr. Jones is one of the most Lyme knowledgable doctors in the world. I trust these doctors, I would not go by what a PCP/GP says.
    I had a friend in JR High school in Moses lake that got Lyme disease, back in the 80's. she was always walking home from Frontier through the field's over by Chico's Pizza. they aren't fields anymore though. Also my mom used to be the Park Ranger at Moses Lake State Park and she said that the picnic tables were infested with tick's. She said they were everywhere in that park. who knows how many people got Lyme Disease from that park and have no idea what is wrong with them. Where do you think you got LD from? Both my mom and Dad have been very sick for years, with most of the Lyme symptoms and they will not get tested, everyone of my Dad's sisters and brothers have the symptoms too, so they say it is just some hereditary thing they have. I think they all have Lyme disease. They camp and hike all over the state and all grew-up in Moses Lake. It is such a sad thing that people know nothing about Lyme disease and it's devastating effects. I'm glad that you were able to find a doctor that does know about LD. I know it is alot to take in right now, but it will get better, and the more you learn the more easily it will be to deal with. Keep us informed, and don't be afraid to ask ?'s and use us as support, that is what we are here for. Sarah

     
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