posted
I would like to ask if anyone could please give me any advice on the next step in dealing with medical tests.
I had undiagnosed Lyme for 20 years, but after it was diagnosed by what the NHS calls unacceptable methods in 2005, I've taken 6 years of antibiotics and herbs, but not supplied by the NHS nor taken with much consistency. You all must be realising that getting hold of an LLMD in the UK is impossibe without a lot of money and it's very expensive to travel anywhere in this country, to add to the problems.
Even when my knees are hurting the most, no one can be aware that they feel swollen, but I can tell, they feel achey and tender and I think my knees have gradually grown bigger during this long infection.
The bloods my GP/PCP ordered came back last month with no signs of inflammation such as elevated ESR rate or high CRP level. The base of my spine hurts a lot and feels tender to touch but my PCP said there was no point in having an X-ray as it would show nothing and back pain is very common.
I feel as if I cannot endure any more pain there, its been going on for years and years, and now my ankles are as if the tendons are either very weak or inflamed. I only walk very short distances and cannot stand up for more than 5 minutes without feeling pretty bad.
Finally I get to the question! - What do people advise please?...What should I ask my PCP/GP to order for me? Do I stand a chance of him even agreeing with me that I should get checked out in the joints and spine?
Should I ask for a MRI scan or a CT scan or one of those scans that follow blood flow, such as the SPECT type? The last type would cost at least �500 if I try and get one via a private doctor. Which type of scan will be the best one for showing up only slight swelling in knees? I forgot, the left hip has been hurting for a long time too, but sometimes the pain disappears there for a few weeks.
No wonder some doctors think we are weak in the mind and hypochondriacs, we have too many symptoms all at once and they cannot quite believe it.
So many things - but what I guess will happen is that my GP will again say that there's no point and to just keep taking the pain killers.
I forgot to add, that I can only access the one surgery, where all 4 doctors don't believe in Lyme, and have categorically told me I never had it. They say I have ME/CFS and Fibromyalgia and plantar fasciitis, and also you might get an inkling of their general attitude and ignorance from this story:
when I took a tick in last year after it had been on my collar bone area all night after a barbecue and I showed it to the head honcho doctor (the most arrogant one) he said it wasn't a tick, just a creepy crawly, and we don't get ticks in our area and they are only on deer. What an idiot. We get 2 types of deer wandering through the actual streets of the town and the suburbs, and rabbits are running riot here in the sandy sea-side soil..with migratory geese takiing up residence in the field behind my house and bird watchers coming to the area all the time.
Then he launched into a tirade about me being obsessed with Lyme disease. I walked out saying I'd never known such ignorance. Eventually I got thrown off my own doctors list, after asking for cacium control with something like verapamil, cos my blood calciums were done privately and showed high intra-cellular levels but low levels in the blood plasma.
It left me with one and a half other doctors to hope for, if they would allow me to be a patient, and one agreed, but only on the condition I don't ever mention Lyme.
So that's the background in this rural area, a huge amount of denial of Lyme, but perhaps a chance to get any damage to bones and spine assessed if I ask politely with logical explanations. I need to know if it's worth all of the hassle of being a demanding patient - But I get the intuition feeling that it must be a good idea to see if arthritis or even something like ankylosing spondylitis is beginning?
I'm beginning doxycycline again BTW, after a week of Tinidazole, but I have no one advising me what and when to take anything.
Thank you and best wishes, Dieter (pronounced Deeter)
Posts: 7 | From Europe | Registered: Jan 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Dieter, Welcome to LymeNet. We have many helpful people here, and lots of information.
If your doctors do not want to treat Lyme, you may still be able to do alot for yourself. Two things I can think of are pharmaceutical quality fish oil and systemic enzymes. These will reduce inflammation and swelling and relieve some of the pain.
posted
There are several naturopathic doctors and chiropractors in the USA that do what is called Prolozone Therapy. It is prolotherapy but adding ozone to it, which quickens the healing process.
I receive these injections and they greatly take away the pain - but I have some osteoarthritis as a result of Lyme. This not only helps the muscles and tendons, but it stimulates the body into making new cartilage where there is very little to none.
In the case of cartilage you would need about 4 - 6, technically, to regrow the cartilage.
Dr. Frank Shallenberger in Nevada pioneered Prolozone Shots. If you go to his website he has a list of practitioners on it.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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posted
Thank you so much for your help, Carol in PA, manybites and NanaB.
I am taking good quality fish oil, but only since September. I didn't realise until then that the kind I was taking was only low quality. In 2005 I did try the herb samento and it had a powerful effect. that was the beginning of really knowing I had spirochetes because of the reaction on the 3rd day. And then again on day 28. A real shaking fever and total weakness, I was shaking so much it was frightening I don't mind saying.
Also, I know artesunate is good, and I tried it for a few months. I now believe it cured something - the repeated low grade fevers and chills and night sweats that had been with me for 24 years, which perhaps was a babesia type of organism, they have gone. Or have they gone into hiding?
Thank you all again, there's so much to think about, and to know I am not alone in taking years to get better makes me feel at home here!
In some ways I can read about the theory and the bacteria but when it comes down to it, I feel lost. On a practical basis it feels like being in a giant maze. I guess it's hard to budget for the medicines and decide which way to go and to organize myself. All this lack of concentration I know is a very bad part of the illness.
We really are outside the NHS and one day this has got to change. I paid for many years what we call National Insurance, automatically taken from everyones wages when they work, and the healthcare is supposed to be comprehensive. I think the NHS was working very well in the UK but over the years, infectious diseases somehow got left behind.
Best wishes D
Posts: 7 | From Europe | Registered: Jan 2012
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