Possible lyme?

[skyfall]

Hey all,

I would like to share my story in hopes someone here may be able to give me some guidance, or have had a similar experience.

Chronic constipation starting in October 2013 (bowel movements have not been the same since)

Root canal in November

Pregnancy in December( Started to feel spaced out, sort of like a drunk feeling/sensitivity to artificial lighting)

Miscarried after only 2 weeks, and felt ok for 3 weeks, and then randomly one day the spaced out/drunk feeling/artificial lighting sensitivity came back and has been constant since January (8 months)

I saw a gastro in February who found yeast overgrowth in my stool. He gave me nystatin, and my symptoms never changed. Started researching yeast, and was certain it was causing my issues. I went on a strict diet, and found a doctor who put me on nystatin/diflucan for a month, and i had no relief in symptoms.

Things i have tested for:

Thyroid-Fine

Diabetes-Negative (Although blood sugar slightly out of range)

General blood testing- Ok (neutrophils that fight bacteria 2 points out of range at last blood test), overall white blood count within range

CT head scan-Normal

Food allergy testing shows no allergies

Doctor has tried (Metronidazole)Makes symptoms 10x worse

Nystatin and diflucan make symptoms feel 10x worse

GP a while ago said i had a sinus infection. I had some post nasal drip and my nose runs a bit), so she gave me ceftin- This also made my symptoms feel 10x worse.

Western Blot for lyme-Negative

Symptoms

Constant drunk/high feeling

Lack of focus/ Poor memory

Loss of libido

Bouts of fatigue

Light sensitivity (Not so bad outside in natural light, much worse with indoor lighting) It feels like when you first wake up and turn a lamp on, but my eyes never adjust to the light, and it is constant.

Sound sensitivity

Head pressure around temples and eyes pressure sometimes

Stabbing sensations sometimes at temples

Undigested food in stools

Hard pellet stools/ mucus in stools

Carbs/Sugar/Caffeine make drunk feeling worse

Random itching over skin but with no rash

Heavy feeling eyes/Sometimes feel very sleepy after food

Feel at best first thing in the morning

Sneezing/runny nose

Post nasal drip (constant feeling of build up in throat)

Sore tip of tongue, sometimes middle/back area of tongue slightly white coated

Itchy anus/itching inside ears/nose

Chronic vaginal yeast infections/vaginal itching

Acid Reflux

Heartburn

Cold hands and feet sometimes

Tingling in hands and feet

Stabbing sensations over body

Recently chronic sore throat- Hurts to swallow/Swollen lymph nodes in neck

Recently doctor told me i have a heart murmur

Had a food sensitivity test that showed no food sensitivities, but a high IgE

Random body twitching all over. (in eyes, stomach, back, legs, and feet)

Urgency/frequency of urination- Saw urologist who saw no infection present, and did a cystoscopy which showed no issues with the bladder. Urologist suspects possible chronic cystitis

Stiff feeling hands

Back pain middle/lower area- stabbing sensations sometimes

Nausea sometimes

Tummy pain/bloating sometimes

Chest pain sometimes

Extremely achy neck most of the time

Motion sickness I never had before this started

Random vertigo, especially when tilting head

Positive test for Epstein Barr Virus

I want to have hope, but I am losing it rapidly. They did an ultrasound of my abdomen and found I have gallstones. The doctor called me and also said I have enlarged liver which really scared me, because I know enlarged liver can cause some threatening complications. I am only 25, and I feel helpless.

These past few weeks i have also had this weird sensation in my legs which is hard to explain. It is in the calf muscles. Stabbing sensations, pain, tingling, and sometimes it even feels like my legs are heavy and shaky to walk on.

I saw my Dr who told me: ANA and RA tests were negative, my cd57 (measuring immune health was 64), she said this is pretty low seems most healthy immune systems are 180+, and my ATP(energy to cells was 19).
My doctor also did a neuropathy test due to the tingling etc and said that my numbers are in the 80's, but should be in the 100's, so i have neuropathy, but we don't really know why yet. She gave me ATP fuel which has helped significantly with the weird sensations, but i still get some tingling/weird vibrations in my feet. I am a bit upset that she has not done more tests as it seems my immune health is very poor. She suspects fibro/cfs but i believe there is more to this. I know this is a lot to take in, but has anyone else had a similar experience? These past few days the neuropathy has seemed a lot worse, and i have had eye pain, stingy eyes, eye strain feeling, and vertigo/stabbing at temples. I am seriously scared i am going to go blind or something, and this whole thing is going to kill me

 

[Daffodil]

to rule out lyme, get the LTT ELISPOT for Borrelia from Infectolabs in Germany. call and they will send you a kit to send back with your blood.

 

[JBB]

Western Blot for lyme-Negative

By which lab? Sensitivity of the test depends on the lab running it. Only labs I would bother with are IGeneX / Infectolab for Lyme. Personally I would not rule out Lyme based on one test even from these labs. IGeneX has around 80% sensitivity which is good but not perfect. There is at least one person on this forum who has done the Elispot but their result was -ve due to Lyme dampening your immune system. Their (imo very good) Dr was skeptical from what I heard as they have a co infection. I have heard it is also possible to just have co infections which can be just as nasty.

If you want to research the sensitivity / specificity of different Lyme tests look here for an LLMD's view:
http://webcache.googleusercontent.com/search?q=cache:gP4bnHUlo_4J:www.treatlyme.net/treat-lyme-book/a-review-of-lyme-infection-tests-pass-or-fail.html &cd=1&hl=en&ct=clnk&gl=uk&client=firefox-a

I did IGeneX full panel and got a +ve. Note the IFA part is about 87% sensitive and 80% specific so meant mainly as a signal to keep looking or a further indicator of likelihood to an LLMD. According to this:
https://www.hoffmancentre.com/asset...een-for-Borrelia-burgdorferi-Lyme-Disease.pdf
Some LLMD's will diagnose based on symptoms alone. There seems to be some controversy over this.


Tingling in hands and feet
Random itching over skin but with no rash
Recently chronic sore throat
Random body twitching all over - low Mg - Lyme uses tons of Mg, I was / am very low. Having said this lots (all??) of ME CFS seem to be low.
It is in the calf muscles. Stabbing sensations, pain, tingling..........(look up Lyme arthritis - I have Lyme arthritis but only very rarely so I never thought much of it. Typically arthritic pains in large joints - commonly knees.)
cd57...was 64 - This is fairly low imo. Most posts on here seem to be around that value. Certainly could be Lyme causing that but not necessarily. Below 100 is not very great. Some people with Lyme have < 10 - insanely low - and some even have normal.

I am no expert but from my research these certainly could be indicative of Lyme. For $475 dollars from IGeneX you can do their whole panel and have a good idea. For $275(??) you can do just a Western Blot which may give you a good idea (75% sensitive and 97 specific according to above link.) Lyme can imitate over 300 illnesses so all of your symptoms COULD be caused by Lyme. If I had your symptoms and had been ill a while and nothing helped / was severely ill I would certainly do some Lyme tests (took me 5 years before someone suggested it was likely). If I had CFS / ME and had plenty of money I would do the tests no matter what the symptoms.

Do you have facial palsy? (This would be a good indicator although EBV can also cause this so maybe not for you. I don't know.)

I don't agree with a CFS (or even really fibro) diagnosis. CFS is diagnosed based on exclusion (i.e the cause of the CFS has been missed) and fibro is often diagnosed because a GP just sees CFS with pain / other. They are both a rubbish diagnosis. At least if you get diagnosed with ME by an ME Dr they have ruled you out for most known causes and will have a plan of attack. ME is not CFS.

She suspects fibro/cfs but i believe there is more to this
Yes like I said fibro / CFS by definition are other slightly more complex things so never except this diagnoses - it's BS!!!
They did an ultrasound of my abdomen and found I have gallstones. The doctor called me and also said I have enlarged liver

Sounds to me like you are toxic with something and your liver / gallbladder are overburdened (many things could do this certainly Lyme spirochetes dying will make you toxic). Despite my skepticism with castor oil packs / coffee enemas both gave me pains in my liver to start with before adding something else (not anymore). This makes me believe they really do something + lots of positive stuff about them. With your problems if I did these I would want to do them under a naturopathic doctor (ND). I don't know if they may be contraindicated. Perhaps a good adjunct if you are not getting anywhere would be to see a ND to detox a bit at least. That may help you feel better in the meantime to sort these issues. There is a lot of focus on detox with ND's I think.
I am only 25, and I feel helpless.
Yes, it is very tough having this / any related illness. I also am 25. Have hope because there are lot of great docs and people out there who can support you and people do get better. For more info on Lyme look at some Lyme forums too.

P.S Lyme tests can indicate +ve to a LLMD even if the test does not say it by ILADS guidelines - it is a clinical diagnoses. A positive test is great though of course. I was always put off testing by reading "how inaccurate" the tests are. I now believe that with an LLMD and a reasonable western blot from a good lab you can get a good idea. IGeneX are 80% specific anyway which seems pretty dam good to me.

Hope some of this is a bit helpful to you.


Stay strong *hugs* ,

JBB

 

[Hanna]

to rule out lyme, get the LTT ELISPOT for Borrelia from Infectolabs in Germany. call and they will send you a kit to send back with your blood.

I asked recently my LLMD (a belgian one) about the LTT Elispot, and he didn't think it was worth doing it, as he says false positives are present, and many docs won't take this test as a solid reference for proving existence of borreliosis. Once again... different docs, different opinions, even among LLMDs.

 

[Daffodil]

I asked recently my LLMD (a belgian one) about the LTT Elispot, and he didn't think it was worth doing it, as he says false positives are present, and many docs won't take this test as a solid reference for proving existence of borreliosis. Once again... different docs, different opinions, even among LLMDs.

oh great

 

[Tired of being sick]

I do not know why everyone does not take "Chronic" Epstein Barr Virus more seriously..

I'm starting to believe CEBV is as disabling as Chronic Lyme/MS/CFS/ME and a ton of other autoimmune diseases.
EBV can cause all the symptoms from those diseases mentioned above especially the
24 7 365 days a year STIFF and painful neck. Which I have by the way...

And since I have POTS I have not yet ruled out CEBV as the cause for it either..

I have read many member's posts here who mention they are positive or have high levels of the "Epstein Barr Virus"
Including myself..

CBEV could possibly be the legit diagnosis of CFS/ME.
IMO of course..

 

[JBB]

Yes. Could well be @Tired of being sick . I just don't know very much about CEBV if I'm honest. I hope I don't have that too!

 

[Tired of being sick]

EBV causes mononucleosis and mononucleosis cause severe neck stiffness and pain.

CEBV causes the above 24 7 365 days a year

 

[Valentijn]

I asked recently my LLMD (a belgian one) about the LTT Elispot, and he didn't think it was worth doing it, as he says false positives are present, and many docs won't take this test as a solid reference for proving existence of borreliosis. Once again... different docs, different opinions, even among LLMDs.

The published research shows a very low rate of false positives - in line with Western Blot and such. Does your LLMD have any published (or other) evidence to the contrary, aside from his opinion?

 

[Tired of being sick]

@skyfall
This may help you somewhat, I have noticed that some of your symptoms point to POTS
However in your case as in mine if you do have POTS, it is most likely secondary.
.

Viruses are thought to be the provoking factor in approximately 50% of POTS patients (Low & Schondorf, 1997, p. 279). There are reports of dysautonomia occurring after the Epstein-Barr virus (Itoh, Oishi, Ohnishi, Murai & Imawatari, 1993). Viruses may directly affect the autonomic nervous system or lead to an immune pathogenesis (Grubb, 2000). Roughly one-half of post-viral POTS patients will make a good practical recovery over a 2-5 year period (Grubb, Kanjwal & Kosinski, 2006).
POTS Causes - Dysautonomia Information Network

Unfortunately my POTS condition was not identified until this year.
Since I have had the symptoms basically forever,I can not agree with the

"good practical recovery over a 2-5 year period"

theory because it is too little too late in my case

 

[Hanna]

The published research shows a very low rate of false positives - in line with Western Blot and such. Does your LLMD have any published (or other) evidence to the contrary, aside from his opinion?

This may be his opinion. He didn't send me any published evidence and I havn't asked him, @Valentijn. That's pretty difficult to ask my doc for proofs, as I can't visit him physically because of my impossibility to travel. As I am a rather new patient, I prefer not to be too much "frontal" (I don't know if it is good English).

I am sure KDM has his own good reasons for testing by Elispot LTT though, but somewhere in my mind I have still the XMRV test experience... so I prefer to be somehow a little bit "conservative". This may change of course...

 

[Abha]

Hi Skyfall,

Have you considered Rickettsia infections? Like lyme it is transmitted by ticks too.You can read up on this if you google Dr Cecile Jadin Johannesburg.Dr Jadin has also written a book entitled " A disease called fatigue"...It is mainly about Rickettsia and her father who was a Professor in Tropical Diseases.It is an interesting read.My understanding of Rickettsia is that once infected they are in your tissues/body for life.Dr Jadin sees patients in Johannesburg and overseas too(Namur/Paris?).