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Just diagnosed with Lyme disease

Hi All,

I have just today been diagnosed with Lyme disease, always been a massive sceptic and was very shocked, but my tests were pretty over-whelmingly positive! Blood samples were sent to Igenex in the USA (which I understand has been subject of some controversy), but the ELISA and Western Blot were positive for Lyme, and the species specific to the East Coast of the USA where I remember being bitten on a family holiday aged 15. I have had 16 years of odd neuro symptoms (severe fatigue, paraesthesia, pressure headcahes, muscle twitching), with the dizziness not emerging until July of this year. Have been told by multiple neurologists that I was suffering a complex, chronic form of migraine, which given my family history I always accepeted. However, migraine lifestyle mods and meds have never ever touched my symptoms so this has been the only indication against the migraine diagnosis. I am sure that migraine is the most likely and common explanation for most of your symptoms, but in my case it looks like it wasn’t!!! Just thought I should let everyone know and I’ll post as and when I commence antibiotic treatment, next stop an infectious diseases consultant in London.

Lizzie x

Wow, another one! This is seriously making me want to get tested. How did you go about the testing Lizzie and how much did it cost?

I really can’t believe you have had this so long. I wish you all the best on getting better, do let us know how you get on xxx

Hey I went to a place in Hemel Hempstead called Brakespear Medical and it was blimming expensive, £1000 approx. I was really in 2 minds about doing it, but the only reason I did is beacuse I remembered being bitten and had visited such an endemic area of the US. I guess it depends on the cost and the likelihood of it being Lyme. I also had this episode shortly after my visit to the US where all the lymph glands of one side of neck flared massively so I guess there were a few indicators. I saw in a previous post that Scott stated some stats on how common migraine is in comparison to Lyme so it might be a long shot for alot of peolple…I just don’t know. i was very verys shocked b y such positive lab results!! All the very best to you too Jem if you decide to go for it, I know what it feels like to be ill for so long and how frustrating it is. xx

Did you yourself push for the tests Lizzie or did your neurologist suggest them? Hope the antibiotics do their job. Good luck with the treatment. My, the topicality of this is mind boggling!

Brenda

Gosh it’s so expensive. I really am torn because I want to but then if I spent all that money for nothing I would be gutted. I have never been to the USA. I don’t remember being bitten by anything other than mosquitoes in Greece. I don’t know what to do. Will you stop seeing Dr S now? Come off nori and see an NHS doctor or do you have to go private? xx

Sorry Brenda I wrote a reply and it didn’t post, I organised the tests totally on my own, privately. One neuro a few years back did suggest I get tested for Lyme but the lab lost my bloods, typical!! Jem, I know it’s a tough one, I am still wondering if the test can generate false positives, but the doc assured me it can’t and my tests were very positive (Western blot graded -ve, indeterminate, +, ++, +++, ++++ on each band)…I know how you feel, I was in the same quandry about the costs…it’s hard to know what’s best. I stopped taking nori a couple of weeks ago as I felt it was only making me worse, it hasn’t had any adverse effects (me stopping)…so I guess it was another indicator for Lyme. xxx

this is really unbelievable. 2 people in such a short space of time!

This really does make us question the MAV diagnosis. Something that is based purely on past history and vestibular tests being negative…

Well done for getting tested Lizzie and I hope the treatment plan will really start to help you.

Is there any reason you couldnt get the blood tests done on the NHS?

Hi lizzie

This is a massive shock

Sorry to hear this. I am glad you have the correct diagnosis though. I wish you all the luck in your treatment.

Whats the treatment plan do you know yet? Did they give you any info on what happens now and likely outcome etc

Are you going to let Dr S know?

Thanks guys. Richy the NHS only perform the ELISA and generate alot of false negatives, I was ‘borderline’ on the ELISA so would have prob been told by the NHS I was negative but was highly positive on the Western Blot…Robert, treatment is IV antibiotics for 12 weeks, bit of a scary thought…they said there’s no guarentee I’ll get better but hopefully I will. It’s a tricky one to figure out as Lyme is relatively rare…more so than chronic migraine anyway! I was so so shocked!!! I just don’t know what will happen now, gonna seek an opinion from an infectious diseases specialist then go from there. I have always felt neuros are quick to label patients with no MRI abnormalities/no neurological deficits as ‘migraine’, but it is a diagnosis of exclusion so I always questioned it in the back of my mind…weird. So many people in my family have migraine maybe I have BOTH!!!

When you seeing the specialist? Keep us updated

Let us know what dr s says about this?

yeah… please keep us updated Lizzie, on how the treatment plan goes etc…

Lizzie, I can’t believe what I am reading. Flipping heck! Poor you , all those years with odd symptoms. How you feeling in yourself? Xx

Thanks everyone, I’m pretty shocked! I just hope to god the antibiotics help! I’ll defo keep you all updated, I’m seeing my GP on Friday and asking for a private referral so I can see a consultant quickly, I’ll e-mail Dr. S too and let him know. Eeek hope it’ll be alright. xx

If mav and lyme have identical symptoms then why the hell are these so called top docs not testing for it or sending us of for tests

— Begin quote from "robertgreen99"

If mav and lyme have identical symptoms then why the hell are these so called top docs not testing for it or sending us of for tests

— End quote

good question… would be interested to hear Dr S response to it. I guess they would say that without a rash its probable its not lyme, but from what I understand Lyme can occur without a rash aswell

As I understand it, there is a lot of controversy around Lyme and it appears that many doctors do not want to get involved with it. For a start the basic NHS test for it is not accurate because it isn’t thorough enough. I would assume that if you are not presenting with the classic symptoms and rash then doctors would choose not to consider it. Also there appears to be a reluctance among doctors to start treating Lyme with powerful antibiotics on the basis of these private tests because they fear legal action. Yet again, not enough doctors probably know enough about all the possible Lyme symptoms and it’s a messy area that they prefer to avoid.

I just want to add one little thing here. Lyme disease can CAUSE MAV. In other words–the bacteria that causes Lyme disease is a masterful little bug that can camouflage itself in the system–going for years with no symptoms. It can then, for various reasons including hormonal fluctuations, immune system changes, other infections etc. begin to cause symptoms that are not “typical” for the Lyme bacteria when it first invades the system (the rash and fever that many of you are familiar with). Once the tipping point is “tipped” the host (the person affected) can begin to experience symptoms that make no sense to the doctors because they seem unrelated.

Now, consider this. A migraineur, which research says is really ALL OF US, has a threshold of “normal” where everything seems fine. But when the threshold is reached then symptoms begin and a migraine is experienced. Imagine then, that a person who has never reached his/her threshold with migraine meets a tipping point with Lyme disease–which then sets them over their threshold for migraine. Now this person is experiencing migraine symptoms and in some cases this is in the form of MAV. VOILA–two separate disorders with identicle symptomology.

Meanwhile–back at the medical center–patients can have MAV with no Lyme disease–and MAV is rare enough as it is–and as far as doctors are concerned, Lyme disease is even more rare than MAV (the controversy there is a loooooooonnnnnnnngggggg story). So if someone comes to a doctor with neurological symptoms that turn out to be migraine related, the chances that the doctor will say to himself “hmmm, I wonder if she has Lyme disease” is generally NILL.

Which seems stupid to those of us living this nightmare–but keep in mind that we are separated (many of us) by CONTINENTS and are not as numerous as it seems when we come to this site.

I wouldn’t want to be a doctor dealing with all of this, any more than I’d want to be us dealing with all of this. What a giant quagmire!!!

Watch the documentary “Under our skin.” Discusses the whole “lyme conspiracy.” It’s on netflix if you have it.

Lizzie

Some useful uk links

wadhurst.demon.co.uk/lyme/

bada-uk.org/

I thank everyone for your supportive comments.

I’ve been reading and learning about Lyme for a few months now. I was terrified to learn about it at first, and seriously spent days hysterically crying, as I was so scared when I suspected Lyme. I want to make it clear that I do not wish this upon anyone. The drugs to treat MAV are so much easier, and believe it or not MUCH more straight forward. One just trials drug after drug. Lyme is so complicated, but I wouldn’t be writing this if I didn’t strongly believe that Lyme could be the culprit (in some people) of the constellation of symptoms that we define asMAV. Not saying the culprit for everyone. We are all different. At the beginning of trying to understand Lyme, I believed that if a MAV (preventive migraine) drug worked, then one definitely does not have Lyme. In my opinion, I no longer believe that. I do think some could have Lyme and a migraine drug is acting like a bandage for SOME, not everyone. And, furthermore, it doesn’t mean MAV doesn’t exist for a person with Lyme, but Lyme would be causing MAV symptoms. MAV is really just a name that was given to a constellation of certain symptoms. Don’t get me wrong, I would have given the world to have some relief through migraine drugs. I was hesitant at first to write about Lyme as I didn’t want to scare anyone, as I was so fearful. but, If i could even help one person, I knew I had to share. I would always want someone to do that for me. sorry I’m rambling. so hard to type and look at computer.

I have begun with an oral antibiotic. However, in time I will most likely have to add several more antibiotics or change to others to address coinfections, etc. IT is all so complicated and I feel grateful to have been seen by a doctor who has been ILADS trained for over 30 years. I am scared, though. I hope I have the strength to endure these treatments and likely getting worse before better as the antibiotics kill the bacteria. I might also end up switching to IV infusions. It will be a long, long, battle ahead. I also have to take supplements, etc., to prevent side effects from long-term ABX use.

Dolfnlvr - I am new to Lyme. you clearly know so much. But, I have already come across people that have been on amoxicillin for years with no progress, and they did end up getting better after amox failed. I know those that were on it for even 2 years with no progress, and got well when they ended up addressing coinfections. I think the proportion of people with coinfections who have lyme is in the majority if I am not mistaken (This is written in Dr. Burrascano’s protocol which I am attaching). I was also told that it is important to eventually take a cyst buster (e.g., Flagyl) along with an antibiotic such as Amoxicillin, as Amox is not a cyst buster, and it is crucial to kill the cysts that encase some of the bacteria. With your science background it’s likely you understand this WAY better than me, so excuse me if I’m not explaning this so well. But, I just wanted to share this. Dr. Burrascano also talks about the importance of addressing coinfections in his protocol. Here is his protocol. I believe it’s on page 22. lymenet.org/BurrGuide200810.pdf