My diary with stages / symptoms (Need opinions)

Infections
1

Spent the last few months trying to get to the bottom of this, but think I am getting there and have so far pointed it to be celiac, lyme or candida. Maybe a defiency exists as well, generally I eat pretty well but I have heard magnesium defiency can be prevlant with parasites.

Currently I am awaiting some blood tests on allergies, autoimmune disease (ANA) etc. I have had full blood count, thyroid, kidney, liver and some basic ones already. After my current set I'm going to ask for lyme test as I feel confident it might be this now.

3 male and was in perfect health till a start date I can mark. I've made note of a holiday I went on which feels relevant now to symptoms I've been having.

I've had sinus problems pretty chronic since this started which really vary. Early days I had a lot of fatigue especially in evenings, even after really long sleeps. Haven't felt myself for a while. I haven't marked all the symptoms on the diary below, only the more prominent changes I've noticed. I have had other symptoms which have really flared up after eating which I might put to sensitivies that have arisen. I have had ECG's on my heart multiple times, even when heart rate was going really fast once, still put down to anxiety when I really know it wasn't. I felt like I was having a heart attack at times because it was not something experienced before.

January 4th - 7th

On holiday in Center Parcs which is a woodland getaway type place with Villas spread round a forest. I have heard lyme is synomnis for these.

February 4th - Started to feel run down throughout the day and had a terrible fever throughout the night. It mostly cleared by the next day, but still feeling rundown. Do not remember coming into contact with anyone with these symptoms e.g at work or people getting it after me.

February 5th - Very sore throat has gradually developed

February 6th - 8th - Sore throat cleared. Start getting bouts of tiny head pressure / metallicy taste in moth / slightly stiff feeling neck

February 9th - 15th

The mild head pressure at back of head became persistent and getting bouts of nausea, accompiend by tingling sensations / nerve pain throughout body, left top eyelid horizontal twitching and small muscle twitches, but mostly in hands / legs. Would have flare ups mostly midday. Went to doctors put down to anxiety. Had slightly numbness in cheek once which I haven't really experienced since. Only tingling in face.

February 15th - 26th

Symptoms felt like they had lessened but would usually get headaches midday and dinner, which were mostly situated at the back of the head, feeling pressure like.

February 28th

Started to get strange heart rythmns, chest discomfort which seemed worse again evening and lunchtimes. Experienced acid reflux with pain behind sternum which was something again I've not experienced before, was bought on by lying down, which I know your not meant to do after eating, but something I never experienced before- so stopped this since.

February 29th - March 18th

Heart rythmns (feeling like flipflop beats almost) became apparent mostly after eating. Would often get a fast heart rate at times and feel breathless. Would always get a lot of discomfort after meals and I have tried keeping a food diary but it seemed really random what I could react to, I learnt so much about gluten sensitivity, histamine intolerance and multiple issues that could arise. I had a banana once and started getting itching all over or even having a sip of orange juice in the morning would experience this. The next week I suddenly would not. So the sensitives seem really random. I have always noticeably had more discomfort after meals which would be in the chest, muslce twitching would increase.

April 9th

Discovered what look like pinworms in stool, started off with 1, but would become more regular with each stool. Went to doctors and had them cleared. I've never had these before. Could my comprimised immune system allow these to flourish?

~

Have ocassionally had horrible jerks that wake me up when I'm trying to fall asleep. Not like the ones you get before sleep paralysis, I've lucid dreamed a lot, but feel like it goes right through my body and have to grasp for air. Very hard to describe. Heartbeat in my ears before going sleep has also been noticeable.

April 13th

I have taken vitamin tablets occassionally and noticed them getting stuck in my throat. Had also noticed a swollen tongue once.

April 18th

Have started getting the pressure headaches at top of head again and chest discomfort which hadn't had after meals for about a month have started to come back. Nerve pain / tingling is very very limited now, was getting more of this early on.

Full list of symptoms I've been tracking below:

- Abdominal pain

- Joint pain (wrists / ankes) [Feels like when you've been on a really really long walk]

- Fast heart rate at times

- Chest pain

- Fatigue

- Anxiety / depression / low motivation

- Mild pain in jaw

- Muscle twitching (neck, thighs, back, arms)

- Nerve pain

- Nausea

- Swollen feeling tongue

- Heartbeat in ears (when lying on pillow is noticeable)

- Sore throat

- Breathleness

- Memory recall not great at times

- Constipation, not as quick on toilet

- Itching all over (Paraesthesia)

- Fever (start of problems)

- Numb / weak feeling bottom of right foot (used to come after meals)

- Pressure headaches

- Stiff neck

- Back ache (really random less common)

- Dizziness / strange balance (only had this once)

- Muscle / joint aches

- Couple of panic attacks

- Palpiations when lying down really noticeable

- Difficulty falling back asleep

- Tingling

- Sensitivity to cold at times

- Ringing in ear once or twice

- Ear ache

- Dry mouth

- Sinus issues (sometimes blocked, sometimes fine, but not perfect)

- Tendar scalp

- Burning sensation back of thigh or arm (not had often was early on)

2

Typo there, but meant to put 23 male.

3

You followed a very similar timeline to me. Infact pretty much exact. I have tick born infection.

Get treated asap while still fresh... Mind you I would still say it needs more than a months antibiotics even though still earlier on. I did. Get seen by a Lyme doctor asap preferably They will treat adequately (multiple antibiotics etc). You will prob have to go private to get the best care, it will be the best money you could ever spend in the long run. Honestly Lyme is so difficult to get rid of once it gets to a certain stage and for me that was about 4 months ish

Nhs guidelines caused my infection to progress due to inadequate treatment and the general back and forth you end up doing. After the months antibiotics. They then cast you in the nuisance bin with a diagnosis they don't need evidence of.

Don't let it happen to you, Lyme and co ruins lives. Insist on Lyme test and extended Lyme panel test. Good luck.

4

Thanks for your comment.

Really been back and forth for ages figuring this stuff out. Learnt so much about allergies, defiencies, nutrients, ingredients on packaging - when I've never been much of a health freak before, I guess it's a good thing as can open up better dialogue with doctors and recognise things in future. I don't blame them as Lyme mimics many things and the sensitivites certainly led me astray. I did consider Lyme a little while back. So haven't had a doctor refuse / deny I have it yet, problem is they haven't been too talkative and asked me questions, more me presenting them my symptoms, gives me form, then I'm gone.

Live in the UK so have NHS as well. Always getting up early to grab appointments as I'm not happy booking in advance, as with all the waiting; as you pointed out this is something that should be solved early as possible, wanting to be back to myself and going out again.

I have heard ANA blood test (auto-immune) can sometimes be positive when Lyme exists and my next appointment is next week, I will suggest Lyme and ask for tests at that stage.

I have heard about short anti-biotic treatments so something I will make sure I'm not one of them.

I do have private healthcare with work (BUPA) would that be useful for Lyme? Have a private hospital only up the road or would I need a lyme clinic? I'm not really literate in what to do as I said I've never really had health problems in the past. Live in Hertfordshire. Still got to put forward to my GP, but will keep planning next steps. Probably at 2.5 months since this started which I guess isn't too bad considering some people have longer, how long did yours go undiagnosed for?

Thanks for your help.

5

You sound exactly as I did when I first got it.

I did have the 'telltale' rash though but exact same symptoms as you it still took about 16 weeks or so for any sort of aknowledgment and it would of took a lot longer if I hadn't been so pro active. Even then some doctors were sceptical as its 'so rare', more rare than having the rash and all the symptoms but not having Lyme apparently! It's truly frightening to think of all the people with symptoms but no rash who get left to rot. If only there was a blood test to prove we aren't all malingerers or suffer from depression.

Yes I have positive ANA as do a fair few Lyme patients. So maybe something to look out for, doctors will prob dismiss this though.

As for the private healthcare. You could maybe ask your gp to write a letter for an infectious disease referral. It's at no cost to nhs so they shouldn't have a problem doing it. Then seek out a decent Lyme literate doctor who can help you?

I'm not sure who though. That would take some investigating on forums etc

There seems to be an attitude amongst doctors that patients 'want' Lyme especially 'chronic' Lyme. It's difficult to not get caught up in the politics because of the barriers to get treated.

In the meantime I would do the usual gluten free, low sugar no alcohol etc to help manage the symptoms. Get in your local sauna that helped when I wasn't being treated. Lyme does not like heat apparently. Start herbal protocol if can. Plenty available on Internet. They do help. Tap away at this disease constantly from the start with something and you have a good chance of getting rid of it.

6

Thanks for your reply again.

I'm pretty sure I didn't have the rash, but could easily have been on my back / hairline. I went to Center Parcs back in November with work as well and have even heard the incubation period being a few months. So puts me in high risk areas twice.

Thanks for tips. Will take it step at a time as don't know how my doctor will react though. In some cases we end up being just as knowledgeable as them. I feel I have built up a pretty good diary above which seems to follow the stages I have seen online as well as confirmation from other Lymie's like you. So feel that is enough evidence. Going to print off some documents and some Lyme information sites so I have some resource to back me up in case. I'm hoping my doctor is good though, you just hear online a good majority are problematic.

Will limit breads and things for now. I went on a gluten free diet for a 2 weeks in March anyhow, so pretty comfortable and have knowledge to at least limit it for sometime. Will have a look at some of the natural approaches to it till I get a prescription.

7

UPDATE: ANA, Liver, wheat, diary, egg have come back fine. But have elevated IGE. Now going for Lyme test and food produce allergen mix. From what I heard Lyme can cause elevated levels? So it's nice to have some data saying there IS something going on.

8

hi, you seem to be researching well just worth a mention celiac blood test are not 100% accurate if its suspected you can be sent for a endoscope biopsy to make sure ( its painless and you can have sedation - you wont remember a thing) you do have to eat alot of foods containing wheat for 6 weeks before the test. also from bitter experience make sure your GP prints off the form from public health England to test for lymes otherwise like mine your bloods will just go to a local lab who only do the basic ELISA test. The correct form includes an area were your doctor can fill in symptoms and ask them to write " please also test extended lymes panel" on the form also most important make sure they do write forward to PORTON DOWN FOR TESTING. I would also get intouch with lymes disease action who will keep in contact with porton down lab, look at full results for you and liase with your GP if needed. I found this invaluable as my bloods were sent to a local lab by mistake then finaly sent to porton down but lost on the way then 2 mths later i finaly got a positive result after 2 negative results the previous year when i was unaware the local lab didnt forward them for full testing.The test for candidia overgrowth ( similar symptoms) is blood test for IgG IgA IgM urine test D-arabinitol and stool sample for candidia in colon or lower intestines. Toxic mold syndrome is also worth looking into, as you can see ive looked at every possible reason for my symptoms it paid off in the end! good luck. by the way what are elevated IGE levels ?

9

There's something going on then. Do rule everything out because of the non rash, however with the exposure potential and symptoms you definitely have grounds for nhs testing. Obviously you know how rubbish testimg is but the extended panel seems to be proving a little more helpful. Keep us updated.

10

Not something I made not of, I went for a dog walk in some grasslands for a couple of hours start of January as well, which I think might be more likely, as Center Parcs is pretty well pathed. My doctor thinks I could be on to something, so has sent me for first basic Lyme test and also extended food produce allergy testing, which I think is more more diverse.

11

Hi thanks, will keep these in mind. My doctor thinks I might be on to something so has sent me for testing. I'm pretty aware of the false-positives so I will keep pushing. IGE Levels indicate there is immune reaction going on e.g. allergies. I've never had allergies before so something is causing it.

12

Hi all,

Just an update. My NHS test came back negative, but I have asked for a referral to an LLMD and have an appointment coming up with them. The NHS Dr put me on Doxy for 2 weeks more just to keep me happy really as I have been back and fortt. Obviously this wasn't a solution as too short and could have co-infections which need identifying. I have started taking them and watching out for herxing, I did have a bad flare up yesterday, but need to watch to identify it's not coincidental. I have had new moles appearing, as well as seeing the red lines which are typical of bartonella. Which she denied were a Lyme symptom, true, but it is if you include the spectrum of co-infections. Hopefully my blood test with next LLMD will show something.

Keep persisting and get a diagnosis. Write down every symptom and find the patterns. Self diagnosis is not bad if it helps you reach the end goal quicker and as long as you are still going between appointments.This stuff isn't beyond anyone to learn, it's really just matching the symptoms and patterns to diseases and going through process of elimination. This isn't one of those you want to leave sitting around longer than needed.

13

Well least doctor is being pro active?

You say you have a referral is this to an nhs infectious disease specialist.

Take photos of all the physical symptoms rashes etc, if your as unlucky as me I'm as fit as a fiddle during scheduled doctors appointments then a dying duck the next day, there's a lot that can't and shouldn't be tied in under the chronic fatigue umberella and sometimes it's useful to challenge doctors with actual evidence of the unusual symptoms when pushed down into the general unspecified pains diagnosis. Doctors don't seem to aknowledgment these flares with Lyme and tie it in with chronic fatigue instead.

Someone needs te rewrite the Lyme book and ask proven Lyme patients what the symptoms are, aches and pains (and meningitis at the opposite end of scale) as stated on nhs website do not do it justice or represent the true nature of Lyme to help patients and doctors alike with diagnosis.

Fingers crossed for some steps forward while still early in your illness.

14

hi just asking have you had any progress with futher lymes testing or your specialist apt ? im impressed you are being proactive with this at an early stage i wish i had done this early as now have so many overlapping symptoms its a mine field for any doctor. its 3 years since my symptoms started and i am no nearer to getting treatment even after possitive result for co infections also i too have just had high IgE levels on blood test but my doctors answer to this is take antihistomines without finding out what is causing it!

15

Hi Vicky,

Hope this helps. I've started treatment this past week now and had 'herx' reactions which you might have read about, so causes rise in symptoms cause of die-off of Lyme etc. So re-affirms they are working. I've had bartonella streaks appear in mass which hadn't before, so a Lyme literate doctor should look at your symptoms and can start a course of anti-biotics to see how they work.

Some of the clues found through various blood tests I've had. Some of these come with a suppressed immune system, so you can have reactivated past viruses:

- Epstein Barr (Glanduar fever)

- Herpes 6 (Strain 90% of people get at birth)

- Slight yeast overgrowth

- Lymphocytes low

- Alpha Globulin 1 low

- Red blood count slightly below normal

- Ige levels high (these could be allergies cause by Lyme, intestinal parasites etc.).

- low haemoglobin

Tested positive for band 39 (the most specific one for Lyme), however no others so don't meet the generic CDC/NHS criteria, again from what everyone says it is a clinical diagnosis. It also tested for coinfections but my antibodies were not outside of normal, again whole reason of this is because it suppresses any immune response which the tests look for and I have a fair few extra viruses with it. The other tests I've had can offer a breadcrumb like trail to if you have Lyme if the Lyme tests come back negative.

If you have positive results you may need to find another doctor. The NHS will just do a standard monthly treatment for Lyme and are usually unaware of these coinfections which need separate biotics. You could print out info from the website from Lyme action and to help guide the doctor for the right treatment, however they may be stingent on following the guidelines. Ask for an infectious disease referral or source a lyme doctor local and take the results with you. Far as I'm aware anti-histamines only hit certain receptors for allergies and won't work in some Lyme cases. If the doctor is just suggesting this then you should lose them. If you are at a surgery pick up another doctor, although again you may find which I did with the younger ones they will read the older doctors notes and put faith in their decision even if their blind wrong.

Hope you get it sorted! If you have any questions let me know. Lyme flash net is also a very informative forum for posting questions to.

16

Hi Vicky,

I've been following your story and I'm so sorry to hear about your struggle. I am reaching out to you because my symptoms have mirrored yours. No memories of a tick bite, but I was always outside. In February I got very sick with what seemed liked the flu. I had vertigo for over 2 months, followed by awful jaw pain. I went to see tmj specialists, spent thousands of dollars and I am still not feeling better. The symptom list goes on and on, but it seems like every week there's a new symptom and I constantly feel run down. Once I get tired, I begin to get dizzy. I'll have 3 good days where I feel kind of normal, and then a week bedridden. My bloodwork came back equivocal on ELSA and non reactive on western blot. Blood work was taken after a round of antibiotics. I got tested a second time and it came back normal. I saw a cardiologist who is Lyme literate last week, and he is doing more in depth testing. I am waiting on those results. I'm not really sure what to or where to go next, at this point I'm looking to share stories and try to keep what's left of my sanity. Any info you can provide about your symptoms and journey I would greatly appreciate. Thank you!

17

Recommend checking out Lyme Flash Net. A very large community of Lyme literate people, good for searcing, really helped me understand a lot of things and a bit more active than places like here for Lyme.

18

Thank you so much for the info I really appreciate it!