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So seen a UK Lyme specialist

#1

Soooo…had my appointment with a UK Lyme specialist today. What a lovely guy. Took a very detailed history, explained the incredible controversy over Lyme, particularly in the U.S. He explained that even infectious diseases consultants are incredibly uninformed over Lyme, as are almost all G.Ps. He said it is completely false that it is easily treated and that chronic manifestations absolutely exist. He was very very balanced and explained that the scientific community is polarised, with one end claiming Lyme to be rare and specific to certain localities, and the other camp advocating extremely high doses of antibiotics for indeterminate periods of time. He based everything he spoke about on peer reviewed evidence and his manner and considered approach gave me a huge amount of faith in him.

He said that given my history of visit to such an endemic region of the U.S, my background in agricultural science that has led to multiple potential exposures, history of a bite and the very positive blood tests, Lyme is a no brainer. Once he had taken a history he asked me to fill in a symptom checklist inclusive of stiff neck, headaches, and wait for it…a whole section listing, to quote, ‘dizziness, imbalance, vertigo and lightheadedness’. He said my blood tests were highly positive and he rates Igenex as a reliable lab. He was so shocked that the infectious diseases consultant had discarded these tests. I had about 90% of the symptoms listed I can’t remember all of them but they included anxiety, tremors, muscle twitching etc…

So now I am on 300mg of doxycycline for the next 3 months, he said the prognosis is good and I should see gradual improvement. He doesn’t personally use IV antibiotics as no evidence has backed their increased efficacy over oral dosages.

I feel very very relieved to have finally got a definitive diagnosis and treatment plan. I was also really glad that he had imbalance and dizziness listed as specific diagnostic symptoms of Lyme. I’m far from saying everyone on this forum has Lyme, it’s incredibly unlikely, but I personally had other neurological symptoms, a high risk of tick exposure and very positive blood tests…if anyone wants to ask me anything please do. I don’t think the Lyme issue will be solved anytime soon, it’s an absolute minefield and the scientific community is divided!

xx

#2

Hi lizzie

I am so pleased that he was worth seeing and you now have a correct diagnosis.

Why are these so called top MAV docs not aware of this

#3

Cheers Rob! Fingers crossed there is some light at the end of the tunnel now…I know!!! He asked me if no neurologist had ever considered Lyme testing in the past and was pretty shocked that no one had considered it…I just wish I had known about it years ago…might have saved me from a world of pain!!

#4

Weird, Lizzie, because when someone reads your history with even the slightest thought of infectious disease, Lyme sort of stands up and slams you over the head. And, while knocking it out can be difficult, and require some serious antibiotics, those are less likely to have serious side effects than a lot of the VM drugs. You would think…

Well, maybe not.

Glad it sounds like you are on the right path. :slight_smile:

Andy

#5

Thanks so much for reporting back so comprehensivley Lizzie. Sounds as if you’ve found a real gem of a Doctor there who know his stuff and has a very informed and level headed approach to Lyme. You’re in good hands - hope the treatment isn’t too rough on you and brings marked improvement. Good luck…

Brenda

#6

Thanks so much everyone. Here’s hoping things get better. He presented all the risks and benefits about long term antibiotic use…basically said that antibiotics are prescribed long term for acne and doxy as a prophylactic anti malarial so despite minor risk of c.difficile and thrush it is more important to eliminate Lyme!!

#7

Thanks for sharing about your appointment. I am so glad that he was intelligent and also kind.I am so glad that you are treating the true cause of your awful symptoms, and I hope so much that you get well! I know it isn’t going to be a short or easy road, but you will get there!

#8

Hi DL,

Thanks for posting. For me this is more credible coming from a UK specialist than one from the US. Did you pay out of pocket for this or was it covered by insurance for you?

Did he dismiss migraine outright? Did he say that you could have both?

Thanks 8)

#9

DL –

This article appeared in the New York Times a while ago about IGeneX. Not sure what the outcome was but clearly if you don’t notice anything changing on the ABs after a reasonable amount of time, I think I’d be VERY hesitant about anything long term.

[size=130]Unproved Lyme Disease Tests Prompt Warnings[/size]

Steve Courcier just wanted to know: did he have Lyme disease or didn’t he?

Doctors who tested Mr. Courcier in March at the Mayo Clinic in Scottsdale, Ariz., ruled out Lyme, a tick-borne illness, as an explanation for the disabling pain and exhaustion he was suffering. Then a Texas doctor sent his blood sample to a California laboratory that indicated he did have Lyme disease. But a New York specialist who tested his blood a third time, in June, said emphatically that he did not.

“It’s amazing to me that you could have this much disparity in medical test results and not have the government do something,” said Mr. Courcier, 38-year-old executive with a consulting firm who lives with his wife and two young children in a Dallas suburb.

Now the New York State Department of Health has opened an investigation of the California laboratory, IGeneX Inc., that issued Mr. Courcier’s positive result, after receiving eight complaints from doctors and patients who said its Lyme tests also gave them positive results not confirmed by other labs’ results.

Concern about Lyme testing goes beyond New York State. This year the Food and Drug Administration and the Centers for Disease Control and Prevention released a warning about Lyme tests “whose accuracy and clinical usefulness have not been adequately established.”

#10

Scott–

I’m sure to be sorry I asked this, but why would hearing this from a UK Dr. Be so much better than a US Dr. ? Happy to discuss through PM vs starting a long set of threads but am quite curious. . . :?

#11

Scott - I cannot believe that even you are turning this into a debate, rather than seriously researching lyme in an unbiased fashion, and wishing Lizzie well. I refuse to engage in this, but please know that the article you posted is completely biased. If anyone wishes to truly learn about Lyme, “Cure Unknown,” by Pamela Weintraub explains so much, including research (both sides) done through the last 30 years. Scott - the info you are posting is completely biased and you are misinformed. The interest and only interest of this forum should be in members getting well. How you turned this post around by attacking Lyme Diagnosis and US doctors has truly disgusted me to be completely honest. I know that you are going to now debate me, and I certainly am not going to engage in that. I take this extremely seriously. My husband (a neurosurgeon) and myself (I have a PhD and I know how to properly research) have spent the last months learning about lyme meticulously, and understanding all sides and reasons for the controversy. This isn’t just about chronic dizziness, but multi-systemic symptoms going misdiagnosed. Scott - if you god-forbid were bedridden for years with no objective cause, trust me you would be singing a different tune. Learning about lyme doesn’t mean looking up wikipedia or a few biased articles, but taking time to truly research this illness. I have been learning basically nonstop for months and months and I still have so much to learn. I apologize for this message’s tone, but this has gone on for months now, and I cannot help but be passionate about people getting the correct information and getting well. We ALL deserve to live again.

#12

Hi Lizzie,
I’m so happy for you that your consult was rewarding & hopeful that you will, at last, have some relief from all the suffering you have been going through. Did the Lyme Doc say whether, because you have been ill for so long, it might take some time to recover? I think MAVLisa has indicated that, for her, it will. If it hadn’t been for Lisa’s posts here do you think you would ever have considered that Lyme could be the cause of your illness?
The whole debate over this condition seems to be such a ‘minefield’ and you, at least, have had the privilege of meeting someone who is such a caring and informed doctor. I’m sure he’s treated many, many patients successfully as there is such a lot of Lyme in UK & such a big population! My family in UK are regular hikers & campers & have had quite a few tick bites - so far they have all been treated quickly with the anti-biotics. Also sure there are hundreds more people who aren’t aware of Lyme - don’t get treated & go on to develop symptoms as you have.
Barb

#13

— Begin quote from “MAVLisa”

Scott … the info you are posting is completely biased and you are misinformed.

— End quote

Lisa – and how are you so incredibly certain that all of the information you have been reading and watching is not biased? I don’t get why you disregard or make no reference to the part of this that is not at all straight forward. The video you asked me to watch was highly emotive and showed one point of view. We have read about dubious physicians in the US and know of groups of zealots out there who are convinced in the extreme about a Lyme cover up.

— Begin quote from ____

How you turned this post around by attacking Lyme Diagnosis and US doctors has truly disgusted me to be completely honest.

— End quote

Case in point and why you cannot go into this with blinders on:

[size=130]Ticks aren’t the only parasites living off patients in borreliosis-prone areas[/size]

In 1993 Vithaldis Shah, a New Jersey doctor, had his license yanked for five years for sickening Lyme patients with long-term antibiotic treatments and receiving a payment from the infusion company. In 1996 a doctor in Michigan was suspended after conspiring with a home infusion company and misdiagnosing Lyme patients. In 2000 a study described the death of an anonymous woman from complications arising from treating unsubstantiated Lyme with antibiotics.

Forbes: http://www.forbes.com/forbes/2007/0312/096.html

You reacted exactly the same way when I pointed out the problems with bioidentical hormones. The FACTS are that some of this – particularly chronic Lyme disease – is not supported by evidence and numerous medical bodies worldwide do not support it. That is not Wikipedia. Why do you always become totally unhinged when I post information that provides some balance to this story and does not support your view in full? I know you’re not well but if I come across information that others should read to help them make a more informed decision – in this case about using antibiotics long term – you can bet your boots I will post it. That I take extremely seriously.

The debate is in your own head. I am presenting information that I think should be read. I know I would want to know about it. Don’t read it if it is too upsetting or it leaves you feeling disgusted. Even if I was bedridden now it would not change the way I would go about choosing my own pathway to get well again and that is to look at the all of the evidence and think critically – that’s exactly what I did when I was house bound and extremely ill for 9 months in 2003-4.

Scott

p.s. Lisa, remember that this is an evidence-based discussion forum. This is not a personal attack on you. It is also a migraine forum and not a Lyme forum. Vigorous discussion will always be had if necessary to get to the bottom of whatever is going on. I make no bones about that. I for one want to know how Lyme and migraine interact.

#14

— Begin quote from “dolfnlvr”

Scott- I’m sure to be sorry I asked this, but why would hearing this from a UK Dr. Be so much better than a US Dr. ? Happy to discuss through PM vs starting a long set of threads but am quite curious. . . :?

— End quote

Probably makes no difference at all in hindsight but my first inclination was that it would be more difficult in the UK for a physician to fleece somebody if that was in fact their intention. Are things not more tightly regulated in the UK? Also, the US has a much bigger Lyme problem than the UK which seems like it could make for more fertile ground if someone wanted to exploit this (about 25,000 new cases/year in the US vs 2-3,000 in the UK according to the CDC and the NHS). But you’re right in that a UK or US “Lyme literate” physician may be no different.

#15

Hi All,

I agree it’s so controversial. He mentioned that Igenex had been investigated, but cleared of any wrong doing and as they are still licensed to operate years later as a private reference lab I guess this must be true. He was in total agreement Scott that long term antibiotic use has its risks and said that’s why he’d like to review after 3 months as if I haven’t seen any change we’d need to decide about continuing. He said he couldn’t confirm 100% that Lyme is the cause of all my symptoms, only that the set of symptoms I have can stem from Lyme. The whole appt including the private prescription was £150 and he prescribed 1 month of antibiotics and will write to my GP so I can get the next 2 months on the NHS. He didn’t dismiss migraine, I explained that I’d always been told my symptoms were chronic migraine but he said given my multiple risks of exposure Lyme was a sensible differential diagnosis backed my the blood tests…I had always wondered in the back of my mind about Lyme as I have had hormonal imbalances, urinary problems, tremor etc and sometimes it felt like issues beyond the scope of migraine…I know it’s an absolute nightmare to get to the bottom of Lyme.,…who would have thought a bacterial infection could become so so politicised?? Crazy. Can only present my case in factual terms and hope I improve!!!

Xx

#16

Hi Scott,

I understand you wanting to give a balanced view on the whole Lyme subject, but from a scientific point of view isn’t Lyme more feasible than VM. VM is a diagnosis of exclusion and patient history, which means there is no 100% test to proove you have VM, only a very likely diagnosis.

From this point of view, the fact that you can test for Lyme is possibly more accurate than a VM diagnosis???

#17

— Begin quote from “DizzieLizzie1”

He was in total agreement Scott that long term antibiotic use has its risks and said that’s why he’d like to review after 3 months as if I haven’t seen any change we’d need to decide about continuing. He said he couldn’t confirm 100% that Lyme is the cause of all my symptoms, only that the set of symptoms I have can stem from Lyme. The whole appt including the private prescription was £150 and he prescribed 1 month of antibiotics and will write to my GP so I can get the next 2 months on the NHS. He didn’t dismiss migraine

— End quote

That all sounds sensible. Look forward to hearing how this goes. :slight_smile:

#18

Yeah you have thought so Richy but the tests are so unreliable…techniques debated etc. In the UK a persons best bet is to ask their GP to request a test via the Health Protection Agency, Porton Down but specifically ask for a Western Blot, not just the basic ELISA. Also, ask for the WB bands to be reported as opposed to just the positive/negative result. It would mean a GP agreeing to request this…I think migraine is a diagnosis of exclusion but it has some definitive features and a genetic link which do aid as diagnostic clues…x

#19

I just want to jump in with a quick point - it may not be as simple as a clearly defined case of Lyme OR migraine. As we all know, migraineurs are hyper sensitive - it doesn’t take much to light the fuse of the migraine TNT.

In MAVLisa’s case (unless I’m getting myself muddled), she IS a migraineur. If Lyme is also at play it is very likely the Lyme has also triggered some migraine activity for her. It can be very messy to tease the two apart and unfortunately it’s not always a simple equation of ‘remove the trigger and the migraine will stop’. Sometimes the chronic migraine symptoms can persist long after the trigger is gone. I don’t say that to be defeatist or depress anyone, but just to keep it in mind. I’ve experienced this many times myself - sick with something else and the migraine follows.

#20

Good luck Lizzie. Keep us updated on how it goes. I also look forward to hearing what Dr S has to say about it all