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countrygal

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Posts posted by countrygal

  1. As long as he is symptomatic you can guarantee that it is a persisting infection (proven scientifically) and not just residual 'inflammation' (not proven scientifically.) Get him atleast a month of doxycycline preferably without a gap from the amoxicillin. Don't expect a mainstream doc to help him, although you can try because he is acute. Take pictures if he still has rashes. Go to ilads.org and go through the provider search. Try lymedoc.org too. Look for MD or nurse practitioners, chiropractors and many NDs dont prescribe antibiotics. RUN there, be prepared to drive far. Chronic lyme has destroyed my health and robbed me of many years of my life. Do not wait and see what happens. 

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  2. I have been having the same pity party about vacations. I have six kids ages 2-12 and feel like we will never go on any big family vacations before our oldest is grown. Our biggest hindrance is we have a dairy farm and my dh is the only employee. We would have to find and train someone to take over the farm and would cost $1000 + a week just to pay them. I have been reminding myself that my kids are fortunate to have a childhood on the farm, dad is always home, and we live on land bigger than a state park. Everyone is so right that you can make memories at home or close to home. We do day trips and see things near home.

    You should check out Wisconsin for shorter distance vacations. Wisconsin Dells has numerous resorts and the waterparks are included in the cost of your room for everyone every day you stay there. Some big ones are Kalahari, Great Wolf, and Wilderness. Noah's ark is a separate waterpark and is the best one there (and largest in America.) There are boat tours of the beautiful river and many other nearby attractions. It's like Vegas for kids. Devils Lake State park isn't far either and it's beautiful. Circus world museum is nearby, too. 

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  3. It is not really even medicine, it's just hormone replacement. Her tsh will come down rapidly when properly treated. Is there a way someone can watch her take it everyday? It's possible she is so brain foggy she doesn't realize that it would make her feel better? My tsh dropped from 88 to 7 the first 6 weeks and then to 2 6 weeks after that. The tsh is just her brain screaming at the thyroid and the thyroid isn't responding!

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  4. I don't know if this was mentioned but I have a relative that has a medical alert necklace with a computer chip that can be plugged into any computer. He said it has his health history, doctors names, relatives names, etc. it was waterproof too. (Not sure where you can get them though.) She definitely needs some medical alert necklace or bracelet.

  5. Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Kenneth Bock.

     

    Obviously not all about vaccines but I remember some interesting studies in it and an alternative vaccine schedule. It address common childhood 'epidemic' illnesses which many claim come from vaccines. I honestly don't remember a lot other than it was a very informational book and may give you some insights you are looking for. 

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  6. First, there are NO accurate tests that can tell you for sure if someone has Lyme disease. The Igenex Western blot would be the most accurate (it has more bands) but a negative doesn't exclude it. The CDC even admits that and states it is a clinical diagnosis (based on history, symptoms, and ruling out other diseases.) Here is the controversy as I understand it: Most mainstream doctors will not acknowledge or do not know how to clinically diagnose, let alone treat, chronic lyme. There are no set guidelines to treat chronic lyme as treatment has to be highly individualized with an expert (lyme literate practitioner - someone a member of the International Lyme and Associated Diseases Society aka ILADS.) The Infectious Disease Society of the US states 4 weeks of doxycycline is only needed, even though ilads has 80+ case studies of the bacteria persisting (CSF, synovial fluid of the joints, etc...) IDS states long term antibiotics are ineffective because of one study that states 3 months of one antibiotic didn't rid patients of their symptoms. Chronic lyme patients will always relapse if treatment is ended that soon and co-infections (like babesia and bartonella) aren't addressed. Those need separate/different treatment. My LLMD said average treatment is 2 years, but her patients are very sick by the time they find her. Four weeks of antibiotics in the acute phase (first few weeks after tick bite) of the disease is usually effective but your father would be beyond that if he has it.

    In your father's case, I would get a second opinion from another neurologist. Not that the first one is wrong, but just to have another person look at his situation. Try to find an ilads practitioner who can go through his history. If he is not getting help through conventional medicine (even the best neurologist and infetioous disease doctors won't treat lyme appropriately) and an ilads doctor believes 'clinically' (as there is no accurate test) than a trial treatment with antibiotics. My md uses oral and finds them just as effective, so no PICC line risks. Having a flare of symptoms at the beginning (called a jerish-herxheimer reaction) is telling that the lyme are being killed and the diagnosis is correct. Then improvement starts. Stopping antibiotics before having 2 months of symptom-free (or plateaued health) is then the time to stop antibiotics and watch for a relapse. It's up to the patient to decide the risk of LT antibiotics vs. current state of health and prognosis. Hope this helps clear up some understanding and that your father finds the help he needs.

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  7. Women's International Pharmacy in Madison, Wi told me they have plenty of one grain tablets and they do mailorder. I think there is another in Arizona if that's closer for you. On the Naturetroid website says they built a new facility and are working on catching up the backorders. They have other mail order pharmacies on their website, too. I found this pharmacy on there. (Leave some for me though!)

  8. Drugs. I would literally put a pen in my mouth to bite down on when getting ready to nurse the baby as the pain would hit so hard when my milk let down!!! Ask for narcotics if you can. The midwife told me she prescribed some but I was afraid of being more tired than I already was so I didn't take any. (I should have.) You can schedule ibuprofen and Tylenol to stay ahead of the pain but that only took the edge off.

  9. I would go back to cle. It isn't considered behind; actually I think it's advanced but I haven't used it up to her level. I would take the placement test on their website, too. You don't want her to start at a level that's not right and start off frustrated. I think the only complaint I've seen on here is not enough emphasis on word problems but that could be supplemented.

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  10. I don't think level 3 is babyish for a 9 year old. If AAR turns out to still be a constant struggle or she is just not retaining and progressing then she will probably need some more intensive program like Barton. I have used AAR through all 4 levels with my average child and Barton with my (assuming) moderately dyslexic child - AAR would not have been enough or the right approach to have him be successful. In your case it may fill in the gaps she needs. I would give it a try. It is a good program. Definitely do the prescreening at the Barton website like the PP mentioned.

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  11. I don't have much time to type, but have you thought of taking your IUD out? That's where the pain is - in your pelvic area. I had constant pain (didn't change with my period) when I had a copper IUD - just generalized burning, aching in my lower back, hips, pelvis and it ran down my legs. Maybe your body decided to have an allergic or hypersensitive reaction to it for some reason. I just sort of felt sick and not right all over either. Mine took a few months to go away.

     

    I, too, have had many frustrations with mainstream medical doctors. Most don't have answers :( Don't give up hope. I hope you can find out what's bothering you.

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  12. I haven't checked back! Sorry.

     

    She was a really nice doctor and seemed really knowledgable. I showed her my labs and she said "You definately need t3 support." She claimed that when she sees the free t4 go over 1.4 that there is too much rFT3. Factoring that in with my too low FT3 I'm hypo. She would like to see the ft3 up to 3.5 at least. She said we can do whatever I want - ndt or adding cytomel to the levothyroxine. She even knows people don't prefer the armour as much after the reformulation. So I went with Nature throid only 1/2 grain. She thought that was too low but I wanted to start low. I've normally been on 75 mcg of levo though. She said take it for a week or two and if you feel like you need more split a pill in half and take 3/4 grain. We're going to check levels of everything after 6 weeks. She gave me her email and told me to email her in a week with an update of how I feel. I like her :) :) She told me to keep taking iron, selenium, and zinc and if I still don't feel well when the levels look ok we'll look into iron or vitamin issues then.

     

    Thanks for your help and support. I sure hope this works. I was feeling pretty hopeless :( I want to be me again.

  13. Thanks for the replies. I was able to contact a that doctor who isn't holistic but is an integrative physician and she says she does do all the thyroid tests and has prescribed nature-throid/WP thyroid. I would prefer those over armour anyway because of what I have read. I have an appointment tomorrow! I have prepared my paperwork to take with me. Wish me luck. I want to feel like a functioning human again :(

     

    I have not had my Rt3 checked but this doctor will order it along with the free levels of t3 and t4.

     

    I was not aware that T4 only was hard on adrenals! I really think getting the right dose of NDT will help even out issues I have there. I've tried long enough to take the best vitamins, remove offending foods and sugars and it's not enough.

     

    Still curious if Ellie has any additional advice....

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  14. Can you afford to go to a doc that doesn't take insurance?  Mine charges $300 for the first visit and $150 for subsequent hour long appointments.  He works with me on adrenals and thyroid.  There are Facebook groups for NDT that can help you find a good doc in your area.  For Thyroid Patients Only is a great group. 

     

    Thanks for the suggestions! I never thought of facebook. I'll try that. I'm not having any luck with any links on STTM or hypothyroid mom or google. We are kinda rural... I did just find a doctor online less than an hour drive away that is only $100 for an appointment. She is a family practitioner and holistic MD so I may try her!

  15. Oh, I forgot to respond about the magnesium. I do take usually 200mg Mag citrate (NOW brand) before bed. A friend recommended that (she's really into supplements and is a vet so I think she's credible!) because of my muscle cramps and weakness. The cramps were only during pregnancy and it helped then. I don't think it has helped the weakness. Now I take it to balance out calcium to hopefully prevent kidney stones. I think those were largely due to too many tums, dairy and I calcium well water at the time!

  16. Thanks for the bump :)
     
    I guess I'm just scared to try ndt because I am having a hard time deciphering my symptoms. I can't tell anymore whether it's likely thyroid or adrenal and I'm afraid that starting ndt in the midst of this postpartum limbo will be a bad idea. So I keep waiting to feel better... and I keep feeling worse. I wish I had a doctor who understands :( I'm just wondering if anyone can see my thought process (where I'm coming from) amidst all my previous ramblings about being overmedicated yet under medicated at the same time.

     

    Dr. Rind from his website: 

     

    ​"* RT3: Reflects the level of Reverse T3. I used to measure this often but found little need for it once I realized the approximate value can be estimated from knowing T4 and T3 values since we know that T4 will become either T3 or RT3. For example, if the T4 is elevated and the T3 is low, we know that RT3 (what the rest of the T4 becomes) will be relatively elevated."
     
    Here are my lab results compared to a chart on Dr. Rind website:

    Test         Lab Low        optimal            lab high                my result
     

    tsh              0.5            1.3-1.8              5.0                       0.4

     

    free t4        0.8             1.2-1.3             1.8                        1.7

     

    free t3        2.3               3.2-3.3            4.2                        2.5

     

     

    *edited because I hit the post button too soon. oops.

  17. This is going to be long. I am in need of advice and encouragement. I have had hashi's for 8 years and I'm in my early 30s now. I have had several babies over these last few years and the hormonal adjustment afterwards is awful. I have always been on levothyroxine and it seems easy to adjust while pregnant but afterwards I get 'overmedicated' fast, despite dropping my dose down immediately. My baby is six months old now and I have had my blood drawn for tsh 4 times since: 0.4, 0.53, 0.4 (Free t4 1.7, free t3 2.5), and 0.49 again a few weeks ago. Each time we adjusted the dose a little lower but it really hasn't changed how I feel or my tsh. My free t3 and t4 were drawn per my request but I didn't push my luck with an rt3. It wouldn't have mattered because the endocrinologist didn't even look at the ones I had drawn other than saying they are 'normal.' I said I don't feel well at all when my tsh is below 1 and he said we'll try to get it up by decreasing your dose. He is a nice doctor (endocrinologist) and listens, yet I don't think he understands. He does say some people feel better at the lower end of the scale and some better at the higher end and is willing to work with me to achieve that, however, he thinks I may have other issues (but I know these are all thyroid related), so now I doubt how much he is willing to work with me.

    After doing some research I realized that my free t4 is high (their lab cut-off is 1.7) and free t3 is low. Some days I can't figure out if I'm overmedicated or under medicated - I think I'm BOTH. Can someone explain or verify this?? I have symptoms of both. I go from insomnia and sweats to feeling like ice and dreading having to even walk up stairs, even in the same day. When I am overmedicated on t4 (levothyroxine) I can't sleep or think and my muscles are weak and burny (usually not in a painful way, but now they are getting that way.) This past summer though I have had some scary moments - waking up with my body being numb or sore, nightmares and night sweats, unable to think clearly, and very irritable, and startling at the slightest noise. Each day is difficult to force myself to do things physically. My muscles all feel tight or twitchy. I decreased my dose myself this last time when they call with my 'normal' result (they obviously didn't remember me or look at my previous result which was THE SAME.) Fortunately I am able to sleep now, but I know my dose is not enough at the same time. It's the lowest its ever been. I know my adrenal function is swinging all over the place now as well, which I'm sure is some of these symptoms. I don't know what direction to take anymore. I know my t4 intake was too high (likely to lack of any hormones PP causing me to need less) but because I didn't decrease it fast enough over these months I think I may have developed a lot of rt3 to compensate. (Dr. Rind website stated that I high ft4 and lower ft3 indicates that it's likely a lot of rt3 as the body is trying to rid the extra t4.) I have thought and asked about ndt but now I'm TERRIFIED to try it because I know my adrenals are stressed. I don't even know if a saliva test would be accurate to check my adrenals because I think it changes from hour to hour, day to day, none being the same. At the same time, I feel like it's the only way to get free t3 in me because my body can't seem do it now, for whatever reason. I feel that my adrenals would even out if my thyroid was regulated properly, though. My endo. did say he will prescribe armor if a patient really wants it (he said he doesn't like to, though) BUT I am already feeling overmedicated it would likely make me feel worse and I agreed. I'm too scared to try. I HATE being hyper more than hypo (probably my adrenals can't take it.) I don't want to take any adrenal support herbs because of breastfeeding and my body is sensitive to everything. I have been gluten free for two and a half years as well. I considered using progesterone cream to support my adrenals (and decrease my milk supply which was WAY too high, but improving now) because I have not had any cycles yet. I'm sure I'm sucked dry (literally) in the female hormone department as well. That's why I though the cream might help.

    Well, there it is Thyroid Experts. Please fill my in on what I am missing here and what I should do. Can anyone tell me why I should try NDT? I'm scared it would make me feel worse (I'd rather sleep that be an insomniac), but I don't think I can stand another 6 months of t4 only adjustment. The only way I can see staying on it is taking a very decreased dose until I'm hypo and working up slowly so my body can rid of the rt3 and 'start over' making real ft3. (That sounds insane as I type it...) I think that would take a minimum of 6 months from where I am at to feel remotely normal. I feel like I'm being robbed of my life. I have felt normal on levothyroxine in the past... distant past... probably right before I got pregnant this last time (pregnancy had it's own wonderful issues.) I have blamed my 'not feeling well' with my pregnancy and post partum adjustments in medication. It doesn't seem to affect my fertility though... haha. My children are all normal and healthy, thankfully. This shouldn't take a year each time, right?? Is there a better way? I can't seem to find anyone (even online) who has had this happen postpartum. Has anyone been on ndt while pregnant and breastfeeding and have any advice or experiences to share?

    Also, what dose should I start and how often should it be increased? How often should labs be drawn and what kind of labs for NDT dose adjustments? I want to find a doctor who knows this but I want to know if what he says is what I agree with as well. I can't seem to find a doctor that understands, but I'm going to try. I don't know if I want to go back to this endocrinologist. If he doesn't understand how to read labs, how can I trust him to accurately adjust ndt? I'm tired of trying to figure this out for myself. I REALLY want prepared for when I see another doctor. I will likely order my own labs at a separate lab site (all the recommended by STTM) and bring them. I may travel to a larger city since my small one doesn't have any functional or intergrative physicians that I can find.

     

    One more thing: He drew my parathyroid hormone and mailed the results to me which he said was "normal", however they were 1 point "low" at 13. I asked about it because my most bothersome symptom (first to come and last to leave) is muscle weakness/lack of stamina. I had kidney stones and apparently my kidneys do excrete 'slightly' more calcium than they should according to a 24 hr urine test but the urologist didn't elaborate on what that meant and didn't seem concerned. My endocrinologist didn't seem to think that was related to my hypothyroidism at all and doesn't seem concerned with my parathyroid lab test. My blood calcium and magnesium levels were normal, magnesium on the high end though. Anyone have any insight into that??

     

    Thanks for any and all help. Sorry if it seems all over the place, my brain is obviously not working well.

  18. I just started going to a chiropractor because of this - but in much more pain now, which she says is "normal." Has anyone had good or bad experiences going to a chiro? I feel like she is going to just tell me that it works because that's what she does and believes, yet I don't know who else to go to. My most distressing symptoms are groin pain :/ as well as nerve pain down my leg. Been to a urologist and gynecologist already until doctor Google told me it's likely SI joint and related nerve/muscle pain... I recently had a baby which probably hasn't helped!! I'm interested in hearing other peoples responses.

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