caudwelllyme.com/2016/11/28...
John Caudwell, a prominent British entrepreneur (Phones4U) and philanthropist, found out last year that fifteen members of his family have Lyme disease as well as a range of co-infections typically found in Lyme disease patients.
He chose to do something about it.
Jane x
How do you ask for a test for this???, I can't see GP's being over the moon with an influx of patients with Thyroid/endocrine illnesses coming to them asking for testing for Lyme Disease... Iv'e seen the interview he did on the This Morning programme bing.com/videos/search?q=jo... .
I have had underactive thyroid, CFS, and sever depression for 15 years....so yes, me!, me! I want to be tested.
But will they???
Hello, I'm really sorry to hear about your long term unresolved symptoms. My daughter was in a similar situation from the age of 12 (she is now 36) and was treated for under active thyroid with thyroid, adrenal and sex hormone replacement as well as multiple vitamins and minerals by several well known private thyroid specialists. Unfortunately her health continued to deteriorate to such an extent that we eventually feared for her life. My husband had already died from what the coroner described as "unexplained" reasons.
Fortunately we were told about a doctor in California, and in 2013 we went to see him. It is without question that he saved her life!! He discovered that she has multiple undiagnosed chronic infections including Lyme Disease, Mycotoxins, HHV6 as well as candida and bacterial gut infections. These were all complicated by mast cell illness and were causing inflammation which affected every organ and cell in her body........ thus her declining health. Her thyroid problem was a mere tip of the iceberg.
We have now met countless other UK patients in a similar position through the clinic in California and various forums. The best news of all however is that she and others are recovering, although due to the complexity of the illnesses which were left untreated for so long, and the way that Mycotoxin and Lyme infections behave once they have invaded the body we know that this has to be a slow, unpleasant and painful process.
The bad news is that there is NO test in the NHS that is reliable for Lyme Disease and the NHS does not believe that Mycotoxin illness or chronic viral infections exist!! The tests can only be done in the USA (and some in Germany). The UK, in the shape of doctors, NICE, Public Health England, the BMA and doctors including private doctors are light years behind other countries in putting their patients first.
I cannot bear to see people in this country so shabbily treated and I will gladly share with you the information we have discovered that has set my daughter on her road back to health if you send me a PM. Jane x
Evi4 I'm another person who was convinced it was my thyroid and the NHS Endo told me that he wasn't concerned by my symptoms. My health was worsening yet he failed to offer any explanation or referral to other specialists.
It was through reading janeb15's posts and links that I realised that Lyme was a possibility due to having spent 25 years enjoying outdoor sports. Testing proved positive.
Have now informed my new GP that Lyme test was positive and am being treated privately by an American doctor. Being Scottish she was obviously aware of Lyme disease and actually was really nice and helpful.
Do hope you find some answers.
That's really good news. I hope that a few more like her will stand up to be counted. Jane x x
@janeb15 - thanks for bringing this to the attention of members and you're right, it is an alarming article.
I've been treated side by side with several chronic Lyme patients. Thyroid is just the tip of the iceberg. They have a history of chronic fatigue and oddball symptoms, and it is a long road to recovery. Many also have other coinfections, like Bartonella, as well as flareup of viruses like HHV6, cytomegalovirus, Epstein Barr, etc.
There are slightly different variations of Lyme in different geographic areas. It is carried by ticks, mosquitoes, and fleas. It's been around a very long time. it's widespread in much of the US, particularly in the Northeast, but I know people who acquired it on the west coast. It's also been found in Europe.
Two tests that are used are Western blot and a CD57 panel. If it is caught early, antibiotics work well. But many people find out they have it after they've been infected a long time and treatment is challenging and complex, as the Borrelia organism has different life cycle phases and can hide out in the body and be missed in tests until it changes phases.
Treatment includes thyroid and adrenal support, nutritional support for the immune system, and combinations of antibiotics, artesunate, antiinfective botanicals, low dose naltrexone, and oxidative therapies like high dose vitamin C and hyperbaric oxygen therapy. Certain genetic patterns can make the body have greater challenges to recover, and these people tend to be the sickest.it can take 1-4 years to recover.
There are Lyme literate doctors across the US who treat patients - other doctors are perplexed, indifferent, or dismissive.
Also, it's not just Lyme. Many of us have other chronic infections like mycoplasma or chlamydia pneumoniae, herpes family viruses, Epstein Barr, etc. which simmer away over long periods of time destroying our health. And yes, they throw off thyroid and adrenal function.
Hi, Thank you for sharing your story. I'm so sorry to hear of your difficulties. Do you live in the UK and are you receiving treatment here? If so it would be really helpful to a huge number of people to know where you are obtaining treatment. Jane x
What type of doctor do I even see? I've seen an endocrinologist & my bloodwork is all completely within the middle of normal ranges. I've also been tested for hashimotos. Getting sicker & in more pain every day. I just found out I have neuropathy but I don't know the cause. Exhaustion, hair loss, brain fog, depression, hair loss. But I've actually lost weight because I just don't feel like eating. I'm only 20 & feel like I'm 80. I am in college & everyone keeps telling me I'm just stressed. I live in Michigan.
Do you have copies of your test results including the reference ranges? If you don't then you should ask for them. You'll be amazed how often doctors do one or more of the following :
1) Do the wrong tests
2) Don't do all the tests they say they did
3) Don't know or don't care whether results are optimal or not. An optimal result isn't always in the middle of the range - it really depends on what you are testing.
4) Are extremely reluctant to do nutrient tests (or they are in the UK, not sure about the US).
5) Think that TSH is all you need to know about the thyroid. It isn't.
So, get copies of your results, then post them (including reference ranges) in a new post and ask for feedback.
Ideally, find a doctor who practices functional medicine. Could be an MD, ND, DO, or DC.
LabCorp can process many tests, if there's one in your area. They're standard and covered by most insurance, but a doctor must order them. There's also Direct Labs if you can afford it and can't find a doctor.
I'd get a full thyroid panel, including antibodies, free T3 and 4, and reverse T3. And a 24 hour saliva cortisol test, or better yet a DUTCH test, dried urine test of comprehensive hormones, if you suspect any hormonal issues. I haven't had good luck with endocrinologists...they seem to focus on TSH only and diabetes, not my issues ...
Then, inflammation markers, hs-CRP, serum ferritin, GGT, LDH, etc. And a CBC and CMP-14. All standard blood work that any MD can do.
For infections, you can try Western Blot for Lyme, and IgG/IgA/IgM for HHV6, CMV, c.pneumoniae, m.pneumonia, parvovirus B19, Epstein Barr, and/or whatever else the doctor thinks is best, or is willing to do. Be aware there is some controversy about how to read these tests, there's a difference between acute and chronic infections, and most docs will miss the chronic ones and tell you you're fine. A good clue is if the numbers change for the worse over time.
Maybe look at autoimmune markers, too, depending on your symptoms.
And a Genova Diagnostics GI Effects stool test and NutrEval test, which will give you nutrient status, some heavy metals, and other dysfunction. Do the pre-pay , it'll be cheaper, and follow all directions to the letter. (And if you're having trouble finding a doctor, try their find a practitioner - may help you find one who can do the other tests competently.
I know this sounds like a lot, but I don't know you, your history, and your symptoms to narrow any of this down.
All I can say is, I've seen patients solve years long mysteries with this approach, and they can finally stop beating their heads against the wall, and start efficiently tackling their problems to get well.
Best of luck, and PM me with specifics if you want mire specific answers.
Disclaimer - I am not a doctor, just a very experienced patient, so take my advice with a grain of salt...
Hello, I agree absolutely with Learner1. In addition to the tests she suggests I would get your methylation and nagalase levels checked.
Importantly, get the Lyme tests done. There is another blood test from which a Lyme culture can be grown to check if there is Lyme bacteria in your body.
You should also get a Mycotoxin panel done as Mycotoxin illness can accompany Lyme Disease and its coinfections as well as a chronic viral infection.
MOST importantly find a physician who is willing to carry out all of these tests for you and interpret them. Personally I wouldn't waste any more money on more thyroid tests. A truly learned holistic physician will be able to tell you if you require thyroid support, but first and foremost he will assess the cause of any thyroid problem. Often the causes are multiple and complex.
I can send you a long list of links which includes websites, scientific studies and informative reading matter if that would help. Jane x
Sorry, I'm in the US. Just trying to be helpful and share the state of the art, er, I mean science...
At least if you know what's out there, you know what to advocate for.
Thank you for sharing though. Every bit of information that can be passed on to folks in the UK is really helpful. There is A LOT of resistance here, and not just from the medical profession. We are really on our own over here and have to take charge of our own health. I am so thankful that we have found an expert in the US to help my daughter. I wish you much good fortune in your own health journey. Jane x
I can see the challenges you all face, which is why I am motivated to share.
Here in the US, we face a different landscape with similar and different challenges. We pay high prices for insurance which covers doctors who won't or don't know how to help us, and then out of pocket for everything that's not covered - it's a big game. I try to get doctor visits, prescriptions, and labs covered, then pay out of pocket for IV treatments and nutritional supplements.
And the doctors who are educated and helpful are harassed by insurance companies, state medical boards, and our FDA. So, it becomes care for the few and the wealthy. I suspect it's like that in the UK, too.
There has got to be a better way for the masses. I am sick of being sick, and I know others are, too. Knowledge is power, and important in using your personal resources wisely to fight these battles - smart, efficient use of time, energy, and money applied persistently over time, while making wise lifestyle choices wins the battle. I've seen it happen, and we can succeed, too. The alternative is not palatable.
Thank you for the conversation, and all the best to you and your family.
Association of autoimmune thyroid diseases, chronic atrophic gastritis and gastric carcinoid: experience from a single institution
Can Lyme disease cause thyroidism?
Disturbing assessment of thyroid related illness. DIAGNOSIS OF ENDOCRINE DISEASE: How reliable are free thyroid and total T3 hormone assays?
Lyme disease? Interesting link.
