Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 I have had Lyme since 1997 and symptoms of neuro-lyme since 2001. I've had two MRI's with evidence of progressive demyelination. 20 lesions in the first MRI and 40 in the next two years later. I had numbness, tingling, balance issues - problems I believe to be associated with the demyelination process. In the last month I've started taking Low Dose Naltrexone. It's changed my life. No more pain, dizziness, numbness, tingling. They are gone. Just putting it out there for those others who have neuro-symptoms as bad as mine or with confirmed evidence of a demyelination process. Rather than do a poor job explaining what how it works, I'll just link to two pages. LDN is used as an alternative treatment for MS. I know that I don't have MS, but knowing I have Lyme whose end result looks a whole lot like MS (despite the fact that I've been treating it for two years with herbs and antibiotics), I was willing to give LDN a shot. I got mine online, through a Canadian pharmacy that ships from India. I have to compound it myself. LDN doesn't cure the Lyme problem, but it helps calm the inflammation. Links for more information: http://www.low dose naltrexone.org/ and http://www.wellsphere.com/lyme-disease-article/remove-another-healing-block-by-l\ owering-inflammation-in-your-body/257895 and http://www.lymebook.com/lyme-disease-low-dose-naltrexone-ldn and http://www.webspawner.com/users/introtoldn/ and http://www.ncbi.nlm.nih.gov/pubmed/18728058?itool=EntrezSystem2.PEntrez.Pubmed.P\ ubmed_ResultsPanel.Pubmed_RVDocSum & ordinalpos=23 and http://www.ncbi.nlm.nih.gov/pubmed/15694688?itool=EntrezSystem2.PEntrez.Pubmed.P\ ubmed_ResultsPanel.Pubmed_RVDocSum & ordinalpos=5 and http://www.ncbi.nlm.nih.gov/pubmed/19041189?itool=EntrezSystem2.PEntrez.Pubmed.P\ ubmed_ResultsPanel.Pubmed_RVDocSum & ordinalpos=20 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2010 Report Share Posted March 10, 2010 > > LDN doesn't cure the Lyme problem, but it helps calm the inflammation. > > Links for more information: > http://www.low dose naltrexone.org/ interesting, but strange at the same time. In auto-immune disease, usually the problem is too much immune activity (of the wrong flavor). If lowdose naltrexone increase immune (Killer T) activity, I would expect increased symptoms. I read some of the info on the website listed above but still don't understand how it works (scientifically). But it sounds a bit similar to activity of japanese knotweed and catsclaw; modulating immune activity, protecting nerves and helping the body to restore the damage. Interesting that naltrexone does the same for you as it does for many with auto-immune disease. That again suggests these diseases are related somehow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2010 Report Share Posted March 10, 2010 Astrid, do you find it helps with memory and/or any other neuro problems as well? Thanks, > > I have had Lyme since 1997 and symptoms of neuro-lyme since 2001. I've had two MRI's with evidence of progressive demyelination. 20 lesions in the first MRI and 40 in the next two years later. I had numbness, tingling, balance issues - problems I believe to be associated with the demyelination process. In the last month I've started taking Low Dose Naltrexone. It's changed my life. No more pain, dizziness, numbness, tingling. They are gone. Just putting it out there for those others who have neuro-symptoms as bad as mine or with confirmed evidence of a demyelination process. Rather than do a poor job explaining what how it works, I'll just link to two pages. LDN is used as an alternative treatment for MS. I know that I don't have MS, but knowing I have Lyme whose end result looks a whole lot like MS (despite the fact that I've been treating it for two years with herbs and antibiotics), I was willing to give LDN a shot. I got mine online, through a Canadian pharmacy that ships from India. I have to compound it myself. > > LDN doesn't cure the Lyme problem, but it helps calm the inflammation. > > Links for more information: > http://www.low dose naltrexone.org/ > > and > > http://www.wellsphere.com/lyme-disease-article/remove-another-healing-block-by-l\ owering-inflammation-in-your-body/257895 > > and > > http://www.lymebook.com/lyme-disease-low-dose-naltrexone-ldn > > and > > http://www.webspawner.com/users/introtoldn/ > > and > > http://www.ncbi.nlm.nih.gov/pubmed/18728058?itool=EntrezSystem2.PEntrez.Pubmed.P\ ubmed_ResultsPanel.Pubmed_RVDocSum & ordinalpos=23 > > and > > http://www.ncbi.nlm.nih.gov/pubmed/15694688?itool=EntrezSystem2.PEntrez.Pubmed.P\ ubmed_ResultsPanel.Pubmed_RVDocSum & ordinalpos=5 > > and > > http://www.ncbi.nlm.nih.gov/pubmed/19041189?itool=EntrezSystem2.PEntrez.Pubmed.P\ ubmed_ResultsPanel.Pubmed_RVDocSum & ordinalpos=20 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2012 Report Share Posted February 16, 2012 No supplements will help if your thyroid has been destroyed. You will need thyroid hormone replacement for the rest of your life. Luv - Sheila If LDN works and stops the thyroid antibodies, would that mean that no thyroid hormone would be necessary anymore? What about when the thyroid has been almost destroyed by antibodies? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2012 Report Share Posted February 16, 2012 , have you tried taking Melatonin when you go to bed, say 3mgs. This will relax you naturally and hopefully, stop the tooth clenching. This could be why you feel the T3 is not helping yet. How much are you taking daily of T3? Luv - Sheila Btw, I'm on day 2 of T3 and not doing well. Too soon to say of course, but not feeling great at all (panicky feeling, although heart rate not more than 90, very foggy brain...). Apart from that, I'm suffering from tremendous toothache due to clenching at night - not in a great state right now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2012 Report Share Posted February 17, 2012 I think I've dealt with this post from you on another forum - if not then get hold of me again. > > Hi , > Â Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2012 Report Share Posted February 17, 2012 Hi , I'm not pushing LDN as a massive solution - I'm just reporting what I've heard and what those that have been using it have reported to me. You'd need to do your own research. In the blog there is a link to a Facebook based forum that has a ton of documents that will answer the questions you raise here and there are people there (some from the UK) that are also helpful. I've not noticed a massive difference yet but even so the small benefit it is providing me is welcome. For those that wish to attempt to calm their autoimmune response I'd defintely say that reading Datis Kharrazian's book or visiting his website (http://www.thyroidbook.com/) is a good starting place before considering LDN. Best wishes, ------ Author of: Recovering with T3 My Journey from Hypothyroidism to Good Health Using the T3 Thyroid Hormone My facebook page: http://www.facebook.com/recoveringwitht3 My website: http://recoveringwitht3.com/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2012 Report Share Posted February 17, 2012 HI . I just posted a post on LDN a few days before you was good to get some discussion going.. Ive been reading good things about it too. Im still very limited with hasimotos afetr 16 years. My recepter cells dont let enough hormone in (despite trying everything) so I remain hypo but if I push it then also toxic as blood levels build. Its been never ending as no doc has seemed to have the answer and I continue with trying options myself... Im also working on the idea of calming and balancing the immune system to see if this will 'open' cells and am interested in LDN. Do you know of any UK docs who are using this - or know more about the stuff ive mentioned. Ive read a lot of books and researched a lot but would love a direct approach. Ive been working it out alone for so long that would be lovely to work with a doc on this. Thanks Carly --- > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2012 Report Share Posted February 17, 2012 Carly, read through the following list and from top to bottom and tick each one off by a process of elimination to see if any of these could be the cause of your thyroid hormone not working. There are MANY reasons and many medical conditions associated with thyroid disease that stop thyroid hormone from getting into the cells, where it does its work. I mention these over and over and over again - ad nauseum - people must be bored with the same old stuff, but as each new member joins us, they need to know about these. The main condition responsible for stopping thyroid hormone from working is, quite simply, a patient’s thyroid hormone dose is too low because the doctor or consultant refuses to increase it, because the serum thyroid function test results appear OK. Sometimes, the thyroxine dose is too high, yet patients still don't feel well. They continue to suffer. Some reasons for this: 1. You may be suffering with low adrenal reserve. The production of T4, its conversion to T3, and the receptor uptake requires a normal amount of adrenal hormones, notably, of course, cortisone. (Excess cortisone can shut production down, however.) This is what happens if the adrenals are not responding properly, and provision of cortisone usually switches it on again. But sometimes it doesn’t. If the illness has been going on for a long time, the enzyme seems to fail. This conversion failure (inexplicably denied by many endocrinologists) means the thyroxine builds up, unconverted. So it doesn’t work, and T4 toxicosis results. This makes the patient feel quite unwell, toxic, often with palpitations and chest pain. If provision of adrenal support doesn’t remedy the situation, the final solution is the use of the active thyroid hormone, already converted, T3 - either synthetic or natural. You can check for such a possibility by going to the FILES SECTION of our forum http://health.grouops//thyroid treatment/files/ and scroll down to the folder entitled 'Medical Questionnaires' and complete the Adrenal one. Let us know how you score. You can also get the 24 hour salivary adrenal profile from Genova Diagnostics. See the File entitled 'Discounts on Tests and Supplements'. When ordering, write that Thyroid Patient Advocacy is your medical practitioner. They will send out a kit to you and the results will be sent direct to you. When you receive these, post the results on the forum with the reference ranges and we will help with their interpretation. 2. Then, we have systemic candidiasis. This is where candida albicans, yeast, which causes skin infections almost anywhere in the body, invades the lining of the lower part of the small intestine and the large intestine. Here, the candida sets up residence in the warmth and the dark, and demands to be fed. Loving sugars and starches, candida can make you suffer terrible sweet cravings. Candida can produce toxins which can cause very many symptoms of exhaustion, headache, general illness, and which interfere with the uptake of thyroid and adrenal treatment. Sometimes the levels - which we usually test for - can be very high, and make successful treatment difficult to achieve until adequately treated. As above, do the 'Candida Questionnaire' and let us know how you score, and again, you can be tested by Genova Diagnostics to give you diagnosis. 3. Then there is receptor resistance which could be a culprit. Being hypothyroid for some considerable time may mean the biochemical mechanisms which permit the binding of T3 to the receptors, is downgraded - so the T3 won’t go in. With slow build up of T3, with full adrenal support and adequate vitamins and minerals, the receptors do come on line again. But this can be quite a slow process, and care has to be taken to build the dose up gradually. 4. And then there are Food allergies. The most common food allergy is allergy to gluten, the protein fraction of wheat. The antibody generated by the body, by a process of molecular mimicry, cross reacts with the thyroperoxidase enzyme, (which makes thyroxine) and shuts it down. So allergy to bread can make you hypothyroid. There may be other food allergies with this kind of effect, but information on these is scanty. Certainly allergic response to certain foods can affect adrenal function and imperil thyroid production and uptake. 5. Then we have hormone imbalances. The whole of the endocrine system is linked; each part of it needs the other parts to be operating normally to work properly. An example of this we have seen already, with cortisone. But another example is the operation of sex hormones. The imbalance that occurs at the menopause with progesterone running down, and a relative dominance of oestrogen is a further case in point – oestrogen dominance downgrades production, transportation and uptake of thyroid hormones. This is why hypothyroidism may first appear at the menopause; the symptoms ascribed to this alone, which is then treated – often with extra oestrogen, making the whole thing worse. Deficiency in progesterone most especially needs to be dealt with, since it reverses oestrogen dominance, improves many menopausal symptoms like sweats and mood swings, and reverses osteoporosis. Happily natural progesterone cream is easily obtained: when used it has the added benefit of helping to stabilise adrenal function. 6. Then, there is the possibility of mercury poisoning, caused through amalgam fillings - these might need to be removed but you need to seek a Dentist who specialises in the removal of amalgam fillings. 7. One of the main reasons why thyroid hormone is not being utilised at the cellular level is because you might be suffering with low levels of iron, transferring saturation%, ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc  - these have to be tested for, and treated. When you have been quite unwell for a long time, all these problems have to be dealt with, and since each may affect the other, it all has to be done very carefully. Ask your doctor to work with you to help you find the cause. The balancing of these variables is as much up to you as to your doctor – which is why a check of morning, day and evening temperatures and pulse rates, together with symptoms, good and bad, can be so helpful. To this end, check out Dr Rind's Metabolic Metabolic Temperature Graph http://www.drrind.com/therapies/metabolic-temperature-graph  If your doctor tries to tell you that low levels of the above mentioned nutrients have nothing to do with your low thyroid state, copy out the following of just a few references to the research/studies that have been done to show that there is a very big connection. Doctors are not taught about this at medical school, so we have to help them where we can - so they, in turn, can help their other patients. Low iron/ferritin: Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (1-4)). 1. Dillman E, Gale C, Green W, et al. Hypothermia in iron deficiency due to altered triiodithyroidine metabolism. Regulatory, Integrative and Comparative Physiology 1980;239(5):377-R381. 2. SM, PE, Lukaski HC. In vitro hepatic thyroid hormone deiodination in iron-deficient rats: effect of dietary fat. Life Sci 1993;53(8):603-9. 3. Zimmermann MB, Köhrle J. The Impact of Iron and Selenium Deficiencies on Iodine and Thyroid Metabolism: Biochemistry and Relevance to Public Health. Thyroid 2002;12(10): 867-78. 4. Beard J, tobin B, Green W. Evidence for Thyroid Hormone Deficiency in Iron-Deficient Anemic Rats. J. Nutr. 1989;119:772-778. Low vitamin B12: http://www.ncbi.nlm.nih.gov/pubmed/18655403 Low vitamin D3: http://www.eje-online.org/cgi/content/abstract/113/3/329 and http://www.goodhormonehealth.com/VitaminD.pdf Low magnesium: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292768/pdf/jcinvest00264-0105.pdf Low folate: http://www.clinchem.org/cgi/content/full/47/9/1738 and http://www.liebertonline.com/doi/abs/10.1089/thy.1999.9.1163 Low copper http://www.ithyroid.com/copper.htm http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm http://www.ithyroid.com/copper.htm http://www.rjpbcs.com/pdf/2011_2(2)/68.pdf http://ajplegacy.physiology.org/content/171/3/652.extract Low zinc:http://www.istanbul.edu.tr/ffdbiyo/current4/07%20Iham%20AM%C4%B0R.pdf and http://articles.webraydian.com/article1648-Role_of_Zinc_and_Copper_in_Effective_Thyroid_Function.html · NOTE: When your blood tests come back, ask your doctor for a copy and remember to always get the reference range and post them on the forum. This is because doctors will often tell you that there is not a problem because blood tests have come back within the reference range. You need to know where about in the reference range they are. We will again, help with their interpretation. · Vitamin B12 levels for both men and women need to be at the top of the range in a reference interval of around 175 -900. · Vitamin D3 levels need to be about 50. · Magnesium levels need to be at the top of the range Luv - Sheila. Im also working on the idea of calming and balancing the immune system to see if this will 'open' cells and am interested in LDN. Do you know of any UK docs who are using this - or know more about the stuff ive mentioned. Ive read a lot of books and researched a lot but would love a direct approach. Ive been working it out alone for so long that would be lovely to work with a doc on this. Thanks Carly --- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2012 Report Share Posted February 18, 2012 Hi Carly, I'd agree with Sheila - if you are still hypo then you ought to address this first before ever considering LDN. I would not want to rely on LDN to fix the hypo state. I'm not sure what thyroid hormone replacement you are taking but if it is still thyroxine then you unfortunately are experiencing what many patients do - a failure to return to good health through replacement with T4 only. So, if this is the case then apart from Sheila's suggestions I wouldn't waste any more time waiting for T4 to start working. I'd be looking at natural desiccated thyroid or T4/T3 and once you've given one of these products enough time and addressed any other issues that Sheila has referred to then you might consider T3 on its own (eventually). Don't be fobbed off by your doctor either - it will cost chunks of your life feeling ill if you let them tell you there is nothing wrong with your thyroid hormones. Good luck, ------ Author of: Recovering with T3 My Journey from Hypothyroidism to Good Health Using the T3 Thyroid Hormone My facebook page: http://www.facebook.com/recoveringwitht3 My website: http://recoveringwitht3.com/ > > > HI . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2012 Report Share Posted February 18, 2012 Hi and Shelia, Nope ive done everything over the last 16 years and covered everything on list - am on dessicated but tried all options . Feel like nothing havent tried atm! Getting desperate! Thanks Carly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2012 Report Share Posted February 19, 2012 Hi Sheila, I have taken 3mgs of Melatonin in the past, but I realised that they were causing me night terrors! I had the most horrendous nightmares where in them I was dying - then just as I was about to die I woke up! It was really horrible. I've never had that before without melatonin. I've tried taking bromazepam, which helps a bit but the effect wears off. I don't want to get used to taking them regularly either. I'm doing better on the T3 now - very tired, bad headache, but feeling better. I'm taking 12.5 at 8am, 11am, 2pm and 5pm. Thanks, , have you tried taking Melatonin when you go to bed, say 3mgs. This will relax you naturally and hopefully, stop the tooth clenching. This could be why you feel the T3 is not helping yet. How much are you taking daily of T3? Luv - Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2012 Report Share Posted February 19, 2012 Hi Ive been taking ldn for RA for 3 years with some success, others on the group I started have had much more profound results. ALso my daughter Tara diagnosed with hashis some 3 years ago, aged, 15 went on LDN at 1.5mg and withing some 6 months her bloods had corrected and her antibodies reduced. However true to teenage form , she stopped taking it, didnt get the need to continue, and didnt like the change in her sleep...vivid dreams etc. SO thyroid acted up again and her goitre grew, so just a few months ago the doctor put her on levo. Its a shame but she need pretty quick results to feel better. I do think she will start ldn again in the summer when the uni. [ressure is off and then she will probably end up reducing her levo doseage accordingly. It is very hard though to get doctors to go along with it at all and to let her have the blood tests to monitor on a regular basis. Nuala > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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