Introducing myself again ( : and replying to a post that is gone?

Discussion in 'Lyme Disease Archives' started by EricaCFIDS, Mar 20, 2008.

  1. EricaCFIDS

    EricaCFIDS New Member

    Warning!! Long one! ( :

    (If this shows up twice, I apologize, but the board has been acting funny.....so, here goes!)

    Hi Blinkie, Hotpepperfan, MRDAD, and of course Molly (who knows most of this already - Hi to you too!),

    Thanks so much for writing. It’s great to connect with each of you. I’ve read some of your posts before and was just trying to learn. I wasn’t sure about lyme then or whether or not to go see an LLMD. Even though I haven’t been diagnosed yet, I wanted to write here on the lyme board and say “hello” and let everyone here know that I have begun the “lyme journey”. ( :

    My story is:

    I was diagnosed with CFIDS last April by a doctor in Dr. Holtorf's medical group (an FFC in Torrance, CA). I was told I was "negative" for lyme based on my IGENEX WB test. However, Dr. Holtorf has revised criteria for lyme on his website that clearly states otherwise. I posted my results for Munch some time ago and it's because of her that I am now looking into lyme as a possibility for me. I have spent a great deal of time recently researching lyme and an LLMD near me. I have been fortunate enough to find an excellent one reasonably close and I had my first appt with him a few Fridays ago. He came highly recommended off of the Yahoo California lyme group. Many claim he is the “lyme expert” of Northern California.

    My brief history is I am 39 years old and a full time mother of 2 (a sometimes grueling job with my symptoms, but I still LOVE it!!). I have an extremely supportive husband and parents and some friends too. We have good insurance that is a PPO, but we have still paid a tremendous amount out of pocket for the past several years. I've seen specialists of all kind, all over, as well as a week long trip to the Mayo Clinic in Scottsdale (that we are still paying off). They said I was essentially "normal" and probably had CFS. The FFC has helped quite a bit with lots of HRT, heparin and HGH injections, antibiotics and antivirals (Valtrex), oral Nystatin, fluconazole (Diflucan) and Zithromax for sinus infections, mitochondria supplements, immune boosters, and lots and lots of testing.

    These are the ABX or Diflucan meds I’ve taken in the last 3 years just for sinus infections:

    2007

    4 times (January, March, July and October) = Zithromax 250 mg (z pack - equivalent to 10 days worth)

    1 time (August) = Ciprofloxacin HCL 500 mg tablets (30 days - 2 a day)

    4 times (April 30 days, July 15 days, August 15 days, October 15 days) = Fluconazole (Diflucan) 200 mg tables -
    2 a day for 15 days

    2006

    2 times (April and October) = Zithromax 250 mg (z pack - equivalent to 10 days worth)

    2005

    9 times (April a reg dose, then October to end of December 1 3X a week) = Zithromax 250 mg (z pack - equivalent to 10 days worth)

    3 times (September to October 3 times back to back) = Amox TR-K CLV 500-125mg Tab (either 2 or 3 a day for 10 days)

    Even with all of this treatment my symptoms still are:

    -I have unrelenting fatigue

    -I have a constant dizziness and lightheadedness. I have “wave-like” feelings going through my head and a heavy feeling in my head. I have a feeling of poor balance.

    -I have constant “brain fog”, poor concentration, cognitive difficulties and difficulty remembering things. I also find it difficult to read or a strange feeling in my eyes when I try to read, difficulty in focusing on the words. I greatly lack a sharpness of mind.

    -I have unrefreshing sleep

    -I have chronic sinusitis or sinus infections

    -I suffer from anxiety and nervous sweating and just general strange sweating. I cannot tolerate heat at all. I am warm most of the time and sweat easily.

    -I also greatly lack in motivation and stamina. I’ve had to give up most everything I love to do, like walking, any basic exercise, gardening or basic activities with my kids.

    -I had gained 35-40 pounds during the past 4 or 5 years, but have recently lost all of it (from taking the T3, I believe, and following a protein centered diet).

    -I have had 2 ocular migraines (in 5 years) and severe headaches at times

    -I have a lower libido (testosterone HRT is helping that some)

    -I startle very easily and can’t tolerate loud noise or over stimulating environments

    -I often lack a healthy appetite (especially in the morning)

    -I have off and on heart palpitations

    -I do not have pain, but some achiness in my muscles (neck, shoulders, back)

    -I have strange bouts of diarrhea and then it goes away

    -Despite being so fatigued, I don’t often feel very relaxed

    -I will have my symptoms get worse for no reason, then get better or go away for no apparent reason either

    -My symptoms seem to worsen a few days before and during my period

    -In the past I would feel a “lift” after brief antibiotics

    I have never had a tick bite that I recall, however, in 1991 or 1992 I did have a strange bite on the back of my thigh that spread to a very large red mass. It hurt and didn’t itch and I can’t remember what I did for it. I only just recalled this bite recently in my preparation for my appt with my LLMD. It happened when I was working for doctors on the peninsula. I may have been prescribed an antibiotic or just an antihistamine for it. I don’t remember, nor do I remember having any other flulike issues at the time. It was after that though that I began having lots of anxiety, flushing, losing weight, “hyperthyroid” symptoms for several years.

    Then my thyroid “crashed” in 1998 and my adrenals “crashed” in 2002. I went down hill after that and now have all of these issues. Someone referred to my diagnosis as possibly being what's known as "neuro lyme"?

    Testing I've had shows low natural killer cells, low HGH, low T3, high Reverse T3, almost zero progesterone, low testosterone, low cortisol/DHEA, normal estrogen and perhaps a little dominant, high bp and pulse rate, high titers of EBV, HHV-6 and Mycoplasma Pneumoniae, low vitamin D, and a hypercoagulable state. I’m sure there are other things too, but I can’t remember them all!

    My IGENEX Western Blot (April of 2007) results were:

    B DUNCANI AB – REFERRAL

    “ANTIBODY NOT DETECTED TO BABESIA DUNCANI <1:640”

    LYME IGM WESTERN BLOT

    IGENEX IGM RESULT – NEGATIVE
    CDC/NYS RESULT - NEGATIVE

    18 +
    22 –
    **23-25 –
    28 -
    30 +
    **31 IND
    **34 -
    **39 IND
    **41 +
    45 -
    58 -
    66 +
    73 –
    **83-93 IND

    LYME IGG WESTERN BLOT

    IGENEX IGG RESULT – NEGATIVE
    CDC/NYS RESULT – NEGATIVE

    18 +
    22 –
    **23-25 –
    28 -
    30 -
    **31 -
    **34 -
    **39 IND
    **41 +++
    45 -
    58 -
    66 -
    73 -
    **83-93 -

    Since you are all experienced with this condition, I would really love your input on my results. I’d also love to hear any tips you might have. So many people have already helped me. Thank you so much! I'd also love to hear your stories, experiences with treatment, cost predictions, what to expect, etc.

    I would be happy to share my LLMD’s name with you, but I don’t want to post it here. If you have PJ’s or Munch’s, Mollystwin, Twinofdar’s email address, please feel free to ask them for mine. Otherwise, we will find out a way for me to pass it on…..

    My thoughts on the appt with him are that I really liked him. I liked how “real” he was about everything. I also liked how in depth of a history he took. He got straight to the point and asked really great questions and then would explain his thoughts. I really liked that. My husband sat in on the appt with me, which really helped. He feels invested in my plan of action and knows what I know too. He asked my husband some questions too, which I also liked. He sat in a big oversized chair across from us and settled in for a lengthy discussion. It was almost a 2 hour appt.

    I came very prepared with copies of all of my labs from the past year (including my IGENEX WB test), all of my test results from the Mayo Clinic, any older labs that may mean something as well as 5 pages I typed up of my current symptoms, current prescriptions and supplements, brief history and onset of symptoms as well as a chronological history of who I’ve seen, what they diagnosed me with, their treatments and what I believe has helped me. After going over everything, he did a brief physical exam.

    He said that my case was very compelling. He felt that I likely have lyme and one or more co infections based on my symptoms and history and my previous IGENEX test, but he still wants to do more testing. His Dad apparently works at or runs the IGENEX lab and he himself works as a consultant there. He said my test from a year ago was significant, but that he wanted to put me on Doxy for 3 weeks and try testing me again. He had blood drawn while I was there for the Bartonella test at IGENEX and would send it off that day. He wrote a prescription for Doxy for me to take for 3 weeks and then get my blood drawn for a repeat of the IGENEX test I had a year ago (Western Blot). He also gave me a prescription for oral Nystatin and some strong probiotics to help offset any yeast issues from taking the Doxy.

    He said that my Hashimoto’s (thyroid) that came on in the mid 90’s was “classic” for lyme. I thought that was very interesting. He said that hormone imbalance in general was very common with it also.

    During the physical exam he noticed what he called “lesions” on my skin (mostly on my abdomen and chest). I’ve often wondered why I had them and just assumed they were from aging. They look like funny small red bubbly shaped moles that start out very tiny and slowly get larger. He said those are classic for Babesia. I probably have a dozen of them. He also said many of my symptoms might be Bartonella. He said it was actually possible to get one of those without getting lyme (I think Bartonella), but most likely if I had them I would have lyme as well.

    He also sent me home with a testing kit to do a DMSA 24 hour urine challenge test for metal toxicity. I was really glad he was looking into that as well. He said if I feel improvement on the Doxy then he will put me on it for longer. He said I need to wear sunscreen while on it so I don’t get a sunburn. Is that a real problem with the Doxy? Is sunscreen enough or should I avoid sun altogether? That’s a hard one for me. I love the sun! It makes me feel better. This is California after all!

    He did say that if I did contract lyme and the other infections way back in 1991 or 1992, then it would have been possible to have passed it on to my kids in utero. That really makes me sad if I did, but he said not to worry about that right now. First we need to find out what I actually have. Once he knows more about me, then he will consider options for my kids. If they were born with something, and are healthy now, it may not show up until they start puberty. Also, my daughter did have an actual deer tick attached to her a few years ago. It was very newly attached and not engorged. I thankfully had my wits about me enough to save it and take it to the County health dept to have it tested. They said it was negative for lyme. I’m just not sure if that’s good enough, especially considering that I doubt they checked it for co infections.

    My LLMD also said that I may not have gotten the most severe symptoms from the lyme (and other infections) and that I am probably doing reasonably well for the amount of time that has passed because of good genes and a strong immune system. That statement made me feel so good. I have felt the complete opposite for so long! Like I am not strong at all and must have a really lousy immune system. It’s been very depressing; when in fact I may have successfully fought the infections off somewhat for almost 2 decades. He also said that the amazing treatments and protocol that I have done in the past year have also helped me. I’m glad to know that all of the tons of money I’ve spent in the last year at Holtorf’s office haven’t been a total waste.

    He said that also if it’s been this long then the infections have literally become “one” with me, even attached to my DNA. That’s why it is sometimes so hard to diagnose. The hard part now would be to get in there and kill them off. Successfully doing that would then make them show up on the testing. 3 weeks on the Doxy should succeed in doing enough of that to hopefully get a positive result. He said that he wouldn’t put me on Zithromax right now because I have been on it so much in the past and it may have become resistant to it. He also told me to continue on the other things I am taking so I don’t make too many changes right now. It’s also possible and likely that some people have been bitten more than once in their life. This could be the reason for different uprisings of symptoms over the years. It’s hard to imagine getting bitten twice!

    He was very positive about treatment. He said there was no cure, but treatment for most people was highly effective. He also said that with positive response to treatments it meant no negative effect on a person’s lifespan. He made me feel very hopeful. He told me that if it turns out I don’t have the infections, he will still help me or point me in the right direction. I’m sure there’s more to tell, but I can’t think of it. Oh, he did tell me to drink lemon juice in water or apple cider vinegar (or a pint in a bath) to help with any “die off” symptoms. He said alkalinizing the body, blood and skin would help with that, just in case that helps any of you! ( :

    Last of all, he did recommend a local doctor to replace my FFC doctor with regards to hormones, viruses, etc. His name is Dr. William Mora in Sacramento. He sounds great. I haven’t seen him yet but plan to make an appt soon.

    My questions for you are:

    -have any of you done the DMSA testing and did you have any reaction to it?

    -do any of you have Babesia or those red moles?

    -do any of you have Bartonella?

    -can you offer me any more advice based on what he’s having me do?

    If I think of more from the appt, I will let you know, but overall I was very pleased. I feel more at peace with this plan of action right now than from any other I have done. Thank you all for your input and suggestions. I’d love to hear what you think about what he’s having me do and what his comments were. Thank you!!

    Well, this post is long enough!!

    Best Wishes,
    Erica

    P.S. I had my worst day so far yesterday. I felt really lousy at bedtime, terribly fatigued, nauseous and fluish. Not fun! I’m a little better this morning…..

    MRDAD – yes, I’ve read your posts and you’ve lived near or where I’ve lived most of my life. I grew up in Reno of all places, went to college in Seattle then moved to the Bay Area and eventually here. I’m glad your daughter is doing well. That makes me so happy to hear. It sounds like your Doxy dose is low, but that’s okay. When you raise it up you won’t feel as bad after being on it at a low dose for awhile. Please keep us updated on your progress. I will find a way to get you my LLMD’s name. You sound like a great Dad! ( : Al Gore is such a putz! (my Dad’s favorite word), but since he DID invent the internet, we are all able to talk!! What a guy!

  2. mrdad

    mrdad New Member

    Small world isn't it! My former wife was from an Old Pioneer
    Family who cattle ranched for years in Fallon. Spent enough
    days on her Dad's ranch to know I wasn't cut out for that
    kind of REAL work! Never been so cold as out in the open
    range of desert with that howling wind in my face!

    I want to take the time to re-read an digest all the questions and background you have written. I'm gonna return to your Post
    a bit latter and response then, "K"? I'll see you hopefully
    latter tonight when I return to the 'Puter.

    Huggles,
    MRDAD
  3. EricaCFIDS

    EricaCFIDS New Member

    Thanks so much for writing and for welcoming me. I don't want to be here either, but I do if it's an answer! ( :
    It does sound like we are in a similar place. I'm sorry for us both, but misery does love company! ( : It's nice to be able to share.

    My husband and I have been married for 12 years and together for a little more than 18 years. He's wonderful too and has really been there for me. He grew up in the Bay Area, that's why I moved there. He doesn't seem sick, but that doesn't mean we won't ever test him! (or our kids)

    I was a very healthy, confident, outgoing and happy 21 year old when I met my husband. I was on fire and so happy to start my adult life. I was in love and working and happy. When I got this strange "spider bite", it seems that everything may have started to change around then. I will just never know, but it was around that time that I started to suffer from terrible anxiety, flushing, nervousness and getting very thin. I had a great job in a high position and I was struggling and suffering from these symptoms so much! It was such a hard time for me looking back.

    Then we decided to start a family and I quit working. I had my daughter and was soooooo tired after. It only got worse and I started having really strange symptoms (difficulty writing, talking, holding her, a very puffy face). When I turned 30 I was a wreck!! It was awful! I was so depressed and felt terrible. Shortly after I found out my thyroid had completely crashed. I started Synthroid and thought that was my big answer. It wasn't. You said you take T3. What dose do you take? I take 137mcg. It seems to be the right amount, but my thyroid does funny things, like "kick in" and work a little then quit again, so it throws me off. I always say it's like chasing my tail.

    Then we moved out of the Bay Area and soon after had our son. When he was 5 weeks old 9/11 happened. I was already emotional enough from postpartum hormones, but it was really terrible. I saw it live because I was up early with my new baby. Lot of things were stressful then and before I knew it, my adrenals had crashed. You're the first person to say those same words!! What was it like for you? For me, I was so dizzy and tired and sick all the time. I started getting regular sinus infections and catching everything my kids and husband caught. I would get way sicker and for much longer than everyone else. I was once taking Isocort up to 21 times a day after that! How many do you take? It really helped. I'm not sure why I ever stopped.

    From there, I just went downhill. I improved my adrenals somewhat or just supported them, but must have then gotten viruses and a really low immune system. So, to answer your question, I first may have had symptoms in 1991 or 92 and again in 98 (which I always thought was just thyroid) and then once more really bad in late 2002 until now. It's been a long road.

    What makes you think it was human to human contact? Just curious. I would believe anything at this point. It makes sense. If so, my hubbie's in trouble! ( : I worry about my kids, but honestly they seem fine. If I had it before I was pregnant, then that would be lousy, but I'm so glad that I had them. I don't want them to be sick, but I truly question the percentage of kids that it would be passed on to. I just think that the mother's body is naturally so protective of so many things to her fetus, that it may not be absolute. It's hard to know.

    I understand your hesitation about having kids of your own knowing you have lyme. It must be very hard to decide. I'm sorry about that. I never knew and had them anyway. Which is worse? Adopting would be nice too. I read somewhere that parents can't feel guilty when their kids contract lyme. There is absolutely no way to protect them! You can try, but you can't absolutely prevent it from happening. I can't imagine the guilt for some parents and it's true, you can't really do anything absolute. As I learn more about my kids and if they have anything, I will share it with you. Maybe you can just get highly informed on the risks and see where that takes you. I would love for you to still be able to have kids.

    That's interesting that you also had a tick bite. My LLMD thinks some people get more than one bite. It really confuses everything but makes sense that it could happen. I've actually seen several deer ticks on me, but not attached. They are everywhere where we live. We fenced our property though, which I've read helps because there is no deer population going through our yard. They are still here though. We've taken them off of our black lab (try finding deer ticks on a black lab!). I'd rather him not come in the house anymore, but that's never going to happen. He's part of the family (we fondly refer to him as our "first child"). He's going to be 12 in April.

    I'm not sure who Dr. B is? What city is he in? Where abouts are you? We always lived on the Peninsula in Millbrae. Now we live near Auburn in the Sierra foothills. I saw Dr. H in Redwood City. He was great. I've only seen him once so far. I have a follow up in the next week or so. I'm curious to see what I learn.

    Yes, I've joined the California Lyme Group (Yahoo). I signed up to find an LLMD and have forgotten to go back. Do you go on there much? I will have to go again. I'm the same name there. Are you blinkie there too? Is it a good group? I like reading more, but some of the posts are depressing. I like asking a question and getting responses, but just general reading can get me depressed about it all.

    I'm so sorry that your adrenals crashed right after you got married. Life can be so unfair. If it makes you feel any better, I totally understand. It sounds like you are doing so much better though on the treatments! That thrills me!! I want to hear that so much. Have you herxed a lot? Do you have the funny red bubbly moles? (Babesia) I would love to have my brain fog clear and have my recall back again. I would also love for my dizziness to go away. I don't like the fatigue, but I could live with that. I take a little bit of Adderall in the am and it really helps me.

    Thank you so much for sharing and for your encouragement. Acceptance is hard. Hope is awesome though! I feel it for the first time in a long time. I feel so bad for my husband too sometimes. I've been dealing with some aspect of this almost the whole time I've known him. He doesn't even think about it though. He's really great. It sounds like your husband is too. We have to remember to count our blessings.

    Well, I've written a novel! I look forward to hearing back from you. Take care!

    All the best,
    Erica
  4. mrdad

    mrdad New Member

    Well. It sure isn't simple is it? Lots of complicated things
    to work through including other possible inclusive pathogens!
    Possible viral implications also.

    My hemochromatosis has very similar symptoms found in Lyme
    Disease. Muscle/Joint pain, brain fog, chronic fatigue,
    unrefreshing sleep. Yet there are other symptoms that many
    Lyme patients have mentioned that I have not experienced.

    I'm just getting started on this Lyme road on the Doxy and
    I'll take it from there. It's great to have people so available to share experiences and info. Trying to get my
    Doxy extended and increased to a higher level per mg. Left
    a note for my CNP today in Her mailbox and hope to get a reply tomorrow. 200mg's a day was not likely "strong" enough
    to be of much value. Suggested 400mg's a day to Her. We
    shall see. Believe I'm Her first Lyme case! Gonna see if
    She can find me a Specialist at UCSF Hospital!

    Erica, do you know if there are any LLMD's in Sacramento
    or Davis? Ya think there would be as it is an Agricultural
    School.(?)(?)

    Blinkie: Are you saying that you think you got the Lyme thru
    human contact or another malady? I know that it is strongly
    believed that CFS can be explained by viral infections such
    as Mono etc. I've not heard of a Lyme factor thru personal
    contact. I've had Lyme most likely for decades and to my
    knowledge never passed it on to another. I think there is a
    possibility that other than the deer tick may be other sources (carriers) of the disease. My daughter had no known
    tic bite, yet has had Lyme for over a doz. years!

    Anywho, hope to speak with both you and Erica soon! Take
    care for now and have a pleasant Easter!
    Huggles,
    MRDAD

    P.S. Blinkie: I have Family in San Bruno, So. City and Millbrae! But Auburn is a much better alternative to the
    Bay Area anymore.




    [This Message was Edited on 03/20/2008]
  5. EricaCFIDS

    EricaCFIDS New Member

    Thanks for writing (twice!)

    I thought it was interesting that you have hemochromatosis. I recently showed signs on my iron blood results of possibly having borderline hemochromatosis. I'm keeping an eye on it. I give so much blood for testing, that I'm not too concerned. It's on the backburner for me right now. How were you diagnosed and what treatment for it do you do?

    I hope you can get an increase on your Doxy. That would be good and it would also be helpful for you to see an LLMD. The one I saw in Redwood City used to be in Grass Valley/Nevada City. He moved last June (what a bummer). That would be so much closer for me. I have not heard of an LLMD in Sacramento or Davis. You could try posting on the California Lyme board on Yahoo to see if there are any. Dr. William Mora in Sacramento apparently works with lyme. He's not an LLMD and he doesn't take insurance either. There one in Chico that is an LLMD and does take PPO insurance. He's Dr. J and works with Mr. H a pharmacist who is on the board of directors for one of the big lyme organizations (ILADS I think). I've heard good thing about him.

    My husband is from San Bruno and his parents have lived there for over 50 years! (same house) We both used to work in So. City for a long time and Millbrae was where we called home. That's amazing! We were just there a few weeks ago. Yes, up here (IMO) is much better. I'm a country girl at heart and couldn't raise my kids in the Bay Area. I like the quiet, the open space, the wildlife (except for ticks!), being close to Tahoe and not so much congestion. It's nice.

    I've been to Fallon. That's tough country out there and brutally cold in the winter I'm sure! What an interesting history you have. Nevada is a fascinating place. It was always filled with that small town atmosphere. Everyone knew everyone. I used to babysit for an ex-governor, Red Skelton had a summer place out where we lived, I grew up with the Harrah's boys and when I took my pony's buggy in to get painted (late 70s)- all they had left was "Wayne Newton white" (from painting one of his cadillacs). It was an interesting world! It was all about the casinos and gaming. It was always a 24 hour place and quite unique. I think it's changed a lot though now and grown!!

    Have a wonderful Easter too. Keep in touch!
    ( : Erica(CFIDS)
  6. EricaCFIDS

    EricaCFIDS New Member

    Hi Jami,

    It's so great to share with you. I've never felt like I had so many similarities with anyone else. ( : It's a comfort.

    I really should be working on our taxes and medical reimbursements today (and our budget, bills, etc.), but I'm just not motivated to do it! My concentration is terrible and my motivation is even worse. I'm hoping the doxy helps with that in the coming weeks. My kids are off all next week for Easter break, so it will be very hard to get anything done! ( : I have a 4th grader and a kindergartener. It's a busy life! They are what keeps me going though. I love them so much.

    Wham! is right!! Somedays I feel sad and feel like it has all been so unfair, but then I look at my husband and kids and switch gears and count my blessings. Everyone has their trials in life, all different. I have really accepted that. It's taken a long time, but I don't fight it anymore. My husband really helped me at one point by telling me that finding out what I have shouldn't upset me (CFIDS, Lyme). I already have it, so just learning a name for it doesn't change anything. So, from then on I wasn't afraid to find out specifics. It's actually refreshing after floating around in the abyss of lousy uninformed doctors for so long.

    I'm sorry you're feeling terrible at 30!! OH! Do I understand that. I promised myself I would feel better at 40 than 30!! I have until August, so let's hope and pray that happens! ( : I'm counting on it. I'm glad you are seeing improvements a decade earlier than me. How wonderful! That's nice that you can get disability. I haven't worked in 10 years, well with pay anyway (smile). I've thought about something part-time while my kids are in school to help cover my medical costs. I just haven't felt well enough and I've had a lot of anxiety and weird sweating. That makes it doubly hard to try to interview, especilly after not having worked in so long! So we'll see. I have a PPO too, which makes it easier to see doctors I want to go to. It doesn't cover everything, but gives me a lot more freedom.

    What thyroid tests have you had? Did they test your Free T3, Reverse T3 or TPO? If so, what was your result and the normal ranges (if you don't mind sharing). I'm pretty much a thyroid guru, so I could help you with that. That's the ONE thing that is where it should be right now, thanks to my FFC doctor in LA. My adrenals need some work I'm sure. I plan to address that next. My LLMD gave me a great doctor referral to replace my FFC doctor for hormones, viruses, other issues, etc. I posted it before, but his name is Dr. William Mora in Sacramento. A friend just saw him today for the first time and thought he was wonderful and very thorough. Just an idea for you. I've seen the name of your doctor come up a few times. Are you happy there? Yes, Redwood City is kind of far, but my in-laws live in San Bruno, so we were able to stay them. They watched our kids for us too, so my husband could go to the appt with me. That's the first time he's gone and it was very helpful for him and me. Now, I can do phone appts as well and not have to drive there too often.

    I just may try taking a little Isocort myself again. Just not so much. I'm so glad it relieved your symptoms for you. Hydrocortisone doesn't do anything for me and I really don't like taking it. I'm glad the Isocort is helping you and I think that's good advice not to take too much of it. Rest is key for your adrenals. Did you know that doing gentle resistance exercises and stretching also builds up your adrenals? Rest is the most important thing and the only way you truly rest them is to lay completely flat. Sitting up doesn't do it. It's good to lay down for at least 30 minutes a day, even if you are awake. Also, doing restorative things. Have you ever read Dr. Wilson's book "Adrenal Fatigue the 21st Century Syndrome"? Great book and full of great suggestions and understanding of the condition.

    For your sicknesses, try drinking tons of water (add a little salt to it for your adrenals too), pour packets of Emergen-C in it (3-4 or more a day), eat 1-2 cloves of raw garlic a day and get some sunshine. All great for fighting off colds. ( :

    I cant believe you have a black lab too (with Aussie). AND you have 2 German shepherd mixes?! Wow! How fun. I want more pets, but I just can't handle it right now. We've been taking ticks off of Wesley (our lab) and I always thought that they were less dangerous wood ticks, but they are actually deer ticks that are completely engorged so look bigger, lighter in color and different. Yuck!! I really hate them. I read that they are in the arachnid family. That explains it for me. I hate spiders more than anything.

    Foresthill is pretty close to us, but I have never actually been there, although we say we will go and never do. I think it's a little off the beaten path and the road to and from is a bit curvy. I've heard it's beautiful there and more affordable. You would probably love it! There are lots of pretty areas here. Citrus Heights isn't far at all. That's nice that you would still have family nearby.

    Well, I'm sure that I've missed some things, but I too am babbling on. It's really great to share with you. Try emailing me or if you didn't understand it, post me back here. I look forward to it!

    I hope you are having a good Friday.

    Fondly,
    Erica
    [This Message was Edited on 03/21/2008]
  7. mrdad

    mrdad New Member

    Didn't know that was being considered as a possibility. I
    can readily see viruses being so transported but as you
    say, all possibilities have to be considered. There is so
    much to learn and so many unknowns. The "Black Plaque" and
    more recently "AIDS" were for awhile of unknown origin.
    For years they assumed that Herbies wasn't transferable
    in the absence of an outbreak manifestation. Now they believe
    it can be transmitted even when not!

    Spent lots of time in Yosemite myself. Was married in 1973
    in the Little Interdenominational Chapel with a reception
    and sitdown dinner a the Ahwaunee Hotel! We had 1/4
    of the very top floor for two nights and it's the room JFK
    stayed in before heading north to dedicate Whiskeytown Dam
    out of Redding.

    Spent 10 years in the Sierra too, lots of opps to get Lyme
    for sure!

    Hope you will be doing better soon!
    Huggles,
    MRDAD




  8. EricaCFIDS

    EricaCFIDS New Member

    Hi again Jami,

    I can't imagine studying or working, but watching kids and coordinating their lives is difficult in itself. We do what we can, I guess. That's admirable though that you can study. You are so right about being able to focus on reading something about CFS or lyme or another health topic. I can find the interest and some focus for that, but not other things.

    I'm sorry for your husband's worry and for you worrying for him. I feel that about my kids too. I just can't go there right now, knowing so little yet about me. It's all just lousy. I wish none of us had to worry about lyme.

    Your husband must be a neat guy if he teaches 3rd graders. The stories he must tell you! Kids are so funny, especially what they talk about. It cracks me up. I can only imagine what they must say to their teachers about us!! ha ha I just love eavesdropping on them when they have friends over just to immerse myself in their worlds and way of thinking. It's always entertaining, if not enlightening. ( : Yes, they are at fun ages. I think kindergarteners are just precious. Who can't just love them!? I'm enjoying both of them now that they are growing up and having thoughts of their own, more independence and their own interests. It's just so fun. We're coloring Easter eggs tomorrow and they can't wait for Sunday. Oh, to be a kid......

    As far as thyroid goes, my current FFC doctor says that the most important levels to look at are Free T3. It measures your "active" T3. In other words, what is available and ready for use. He said "optimal" levels should be somewhere between 350-420, depending on the person. Yours are too low. I have never heard of a link of hyperthyroidism with diabetes, but with these levels you are definitely not hyperthyroid. (I'm sure you know this too, but TSH measurements are not very useful either.) Your reverse T3 levels are quite high too. They should be at the bottom of the range or out of range low even is okay. This is a measurement of failure, basically, the failure of your body being able to convert T4 (inactive form) to T3 (the active form). Think of T3 like your gas pedal and Reverse T3 like your brake. T3 represents energy, good metabolism, good sense of well-being and having any measurable levels of Reverse T3 is the opposite of that or at least taking away from your T3. You will always have a high level of one and a low level of the other, or mid-way of both. T4 must be converted into one or the other. Have you ever had a TPO test? This is for Hashimoto's. It helps just in understanding what your body is doing. Apparently from my LLMD, Hashimoto's is a "classic" response to lyme. It means you have significant conversion problems (of T4 to T3) and it slams your metabolic brakes on. For me, I was once to thin, then suddenly started putting on a lot of weight, plus T3 does lots of good things for your body(too many to list). I gained 40 pounds!!! Since being in the "optimal" range, I have lost it all again and feel better. IMO, you need much much much more T3! Now, in your post you wrote "15 mg". That would be a ton, so I'm assuming it's "mcg" (micrograms instead). Then that is very little, only 30 mcg per day with your low T3 levels. I would shoot to at least aim for the low end of "optimal" (350) and see how you feel. There's my two cents on the subject!

    No, I have not had those tests done that you mentioned, only measurement of my natural killer cells, which was quite low, plus the weak adrenals. I'm glad for you that your tests were good. I'd like to boost my immune system somehow. Maybe I will get those tests done too.

    Well, I hope you enjoyed your walk with your dogs and time with your husband. Avoiding the sun is really hard. I love the sun and have been waiting for it to be nice enough to get out in it. Now I'm on doxy and can't. It's a real bummer. I hope I'm off of it before summer! Have you had a reaction to it in the sun? Do you wear strong sun block?

    Email me later. I have to go pick up my little guy. Have a great day!

    ( : Erica
  9. jntsmithfamily

    jntsmithfamily New Member

    I just read your blog. It was written March 2008 and you said that you just met a LLMD that you felt very good about. How did that work out for you? My son lives in the Sacramento area, and based on our reading I suspect he probably has lyme, but for the past year or so no doctors have even suggested it. Do you know of a LLMD with a good track record in the Sacto area? You mentioned William Mora was working with you in conjunction with the LLMD that you liked. I did find one listing that Dr. William Mora treats Lyme (and other illnesses) but I don't know if that makes him a successful LLMD or not. This is my first blog entry (ever). You seem like you've "been there done that" and possibly in the Sacramento area?

    Thanks

    Johnny.
  10. Nanie46

    Nanie46 Moderator

    To find a LLMD:

    Go to lymenet.org...click on flash discussion....sign up for free....click on Seeking a Doctor Board....click on Post New Topic and create a post asking for a LLMD in your state.

    You will receive a private message with names.

    Lymenet.org also has a great Medical Questions board.
  11. jntsmithfamily

    jntsmithfamily New Member

    Thank you. I'll do that.

    Johnny.