Hi kim, peripheral neuropathy is unfortunately caused by over 200 different conditions so it isnt a very helpful symptom for tracking down the right diagnosis. See
http://en.diagnosispro.com/differen...ripheral-neuropathy-causes/11982-154-260.html These includes Hypothyroidism, prescription drugs, poisons, genetic conditions, vitamin deficiencies, and infections including Lyme etc.
Ive had a lot of time on my hands this morning due to waiting round to go to a specialist appointment, so Ive been reading back over your previous posts, Im not a doctor but this is what I get the impression is happening, and something you might be able to do that may help.
All Lyme tests are unreliable, so any results you have had from them are questionable because they give a lot of false positives, you did initially respond well to treatment, but treatment went on longer than is usual which might have made you worse, so maybe you had Lyme and the treatment worked, but it continued to long and made you sicker, you then have had 30 months of Lyme treatment and dont feel better, which I think would show that it is not Lyme causing your problems, if you did have Lyme and it was treated by the initial antibiotic any further tests often show the antibodies to the old infection even though it is cured which can result in false positives.
EBV and HHV6 tests are also unreliable and a lot of totally healthy people get high results on these tests and there is nothing wrong with them, you had some inconclusive tests for these and have had treatment that hasnt helped, because these tests are very unreliable and you have not responded to treatment it is very possible that they are not the cause of your problems, although EBV and HHV6 have been linked to CFS for a long time this theory has never been proven and concern has been expressed from some quarters about the conflict of interest by some groups pushing these views, EBV has an incubation period of 40 days and HHV6 has an incubation period of 10-12 days, ME epidemics showed that whatever was the cause had an incubation period of 4-6 days, it is scientifically impossible for EBV or HHV6 to be the cause of the ME epidemics.
You do however have some tests results which dont seem to have ever been investigated and resolved properly,
You had very low cortisol results, when treated with cortef you experienced some improvements, but it is quite possible that you were be given to much or too little of it, then after tapering of cortef, your cortisol results are back to being very low, I dont feel that you have ever had this properly investigated and your endo from your description of events seemed to be doing a very bad job of things, although subtle dis-regulation in cortisol production has been reported in some CFS studies, there is nothing subtle about your results, Im concerned that something treatable has been missed here and feel that it needs to be investigated properly.
Your Thyroid blood tests have been very wacky, and you have multiple nodules, some quite large, and your left side of your thyroid gland is significantly smaller then the right, again your doctors appear to have been making a mess of properly diagnosing and treating this, and appear to have been giving you the wrong amounts of medication that made things worse. Subtle thyroid problems have been reported in CFS, but again your results are not subtle.
As I see it your cortisol and thyroid results would explain the majority if not all of your symptoms, and you appear to never have had a satisfactory diagnoses and or treatment for these, instead you seem to have had a very poor and disjointed investigation and medication thrown at these issues by doctors who dont give the impression of known exactly what they are doing, and you have had different doctors giving you completely contradictory advice, and their treatment has often made you worse, which strongly indicates that either their diagnosis or treatment protocols have been wrong, I am not convinced that CFS is the cause of your Thyroid and Cortisol issues.
Because the Lyme, EBV and HHV6 tests are so unreliable there is a good chance that they are just red herrings and are not the cause of your symptoms, the problem with specialists is that they tend to only see what they specialise in, so Lyme doctors tend to only see Lyme and CFS doctors tend to only see CFS, and they are often very bad at diagnosing conditions that are outside their area of expertise.
The thing about CFS that the majority of people seem to have forgotten is that the people who invented the condition never said it was a disease! They said it was a syndrome, basically just a group of people with similar symptoms, who didnt fail any of the standard tests and nobody could work out what is wrong with them. In recent years a lot of studies have come out that show that a horrendous percentage of people diagnosed with CFS are actually misdiagnosed and have a missed known condition.
My feeling is that your test results for thyroid and cortisol indicate a strong possibility that something has been missed and you dont have CFS, and from reading about the actions of your various doctors Im not too surprised that this could be a possibility.
It looks to me that you have an untreated or badly treated endocrine problem/ problems, and from what you have said your endos havent been very good and havent worked it out properly.
I dont know if it possible for you travel wise, but there is a doctor in New York who could possibly sort out what is going on for you. He is an endocrinologist and assistant professor of internal medicine, who is very up to date on modern research related to a lot of different conditions. He rightly believes that CFS is a syndrome not a disease and intensively investigates his patients because of this, and claims to be able to find the correct diagnosis around 90% of the time.
His name is Dr Shirwan A Mirza, he has written several articles that explain how to find the correct diagnoses and why the CDC and NICE guidelines are full of serious errors. They are The Myth of Chronic Fatigue Syndrome which can be found at the bottom of this page
http://www.bmj.com/content/334/7605/1221?tab=responses and Chronic fatigue syndrome NICE and CDC miss the boat on this page
http://www.bmj.com/content/335/7617/446?page=2&tab=responses
He also frequently right replies to other articles in the British Medical Journal pointing out that the so called experts are out of date and have got their facts wrong such as Diagnosis and Prognostic Utility of Autoantibodies in Thyrotoxicosis on this page
http://www.bmj.com/content/332/7554/1369?tab=responses and Unveiling the mysteries of the Thyroid on this page
http://www.bmj.com/content/337/bmj.a801?tab=responses
He is very up to date on modern research and if I lived in the States he would be the one doctor I would want to go and see to make sure that all other conditions had been ruled out properly and that I actually had the right diagnosis. Because he strongly believes that the majority of people with a CFS diagnosis are misdiagnosed he is going to try very hard to find the cause of your suffering.
His contact details are
Private practice
399 Grant Avenue Rd Ste 1
Auburn, NY 13021
(315) 253-2669
And he also works at Auburn Memorial Hospital
If youre not able to see him, my view would be to try and find an Endo that knows what theyre doing and get them to try and find out why you have all those thyroid and cortisol problems and treat them properly, because your test results are bad enough to explain your symptoms and there is a good chance they have nothing to do with CFS and might be treatable. If I were you I would want to get a proper explanation and treatment for your endocrine results before worrying to much about the likes of CFS and EBV etc
Hope this helps
All the best Kim