I think I have Lyme - still awaiting test results

Hey all ! My name is Gary.

First let me say I am not 100% sure yet if I should be on this forum because I am still waiting on the Lyme test results.

Having said that, let me tell you my various symptoms and you can tell me if you think it is likely I have Lyme disease.

First I was bitten by a tick and there was a slight rash, I;m not sure how long the tick was on me because it was a little below my right armpit out of sight and one night I happened to feel that area and at first thought it was a mole or small skin tag so I had my wife look at it and saw it was a tick and she pulled it off, a couple days later a slight rash appeared in a rough small circle around where the tick bite was still visible. (we live right next to a forest and most days deer walk thru our yard here in South Carolina)

I'm not exactly sure how many days it was from whenever the tick first got on me and when I first started having symptoms.

Thinking back, Monday/Tuesday of last week I might have started feeling slightly less energetic than usual, but my appetite was still really good. Then on Wednesday it really hit me, what a difference from one day to the next, After being up only about an hour or so Wednesday morning I felt extreme fatigue and had to lay down for about 2 hours, I got back up because I had a few chores I needed to get done even though I felt so very tired, but it wasn't long and I laid down again for at least an hour. Also starting with Wednesday I had a sudden loss of appetite compared to how very good my appetite was the night before. Thursday was almost as bad.

Starting with Wednesday night I had "night sweats" but felt chilly at the same time. This happened either 2 or 3 other nights in the beginning.

Note: I seen my doctor that Friday, she did an immediate EKG (was ok), urine sample (was ok) a CBC blood test for general infection (negative) and sent several other vials of blood to an outside lab (LabCorp) to check for Lyme using the tests called "Lyme Disease Antibodies, Including Reflex to Western Blot on Positives" and a few other tests that could explain sudden extreme fatigue -VPCHG (checks for Porphyria), CMP (complete-metabolic-panel), TSH (thyroid-stimulating-hormone).

Now since she knew I was bite by a tick and had various symptoms she felt it best to immediately start me on doxycycline hyclate 100mg twice daily for 14 days even before the Lyme test results came back since it has a better chance of being more effective the sooner you take it. (still waiting for Lyme test results).

I have been taking the doxycycline for 5 days now and while I still feel much more tired than I should, it is not as extreme as those first few days when it first hit. my appetite has improved slightly, but not back to normal, Miralax has helped with constipation but still taking it as that is not 100% yet, still get lower abdominal bloating and mild discomfort at times, occasionally will feel shallow breathing, the night sweats / chills have stopped.

Other symptoms I had included (I took these from a master list of Lyme symptoms I found online)

....from a Lyme disease symptoms list - the ones I might have to some degree

AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE

Abnormal sensitivity to hot or cold .....ceiling fan can make me feel chillier than before Extreme fatigue after minimal exertion Feeling hot or cold often ......more like occasionally Night sweats (not related to menopause or fever)

Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature

CARDIOPULMONARY/RESPIRATORY/CIRCULATORY
Cough Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion


CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC
"Brainfog"; inability to think clearly .....not severe but noticeable
Fainting or blackouts; feeling like you might faint ......very occasionally, not as much as at first
Libido (decreased) Light-headedness, feeling spaced-out
Muscle twitching .....occasional leg kicking when sleeping
Severe muscle weakness .....not extremely severe, but things feel noticeably heavier than before

DIGESTIVE/HEPATIC

Bloating; intestinal gas ......slight feeling of abdominal bloating and very slight discomfort
Decreased appetite
Frequent constipation .....Miralax has helped, but bm still not 100% back to normal yet
IBS .....not sure
Weight gain or loss .....very slight loss, about 4 lbs, perhaps from not eating as much recently


EQUILIBRIUM/PERCEPTION

Staggering gait (clumsy walking) ....occasionally, could be from tiredness

EYES/VISION

Eye pain ....very occasional burning sensation
Flashes of light perceived peripherally ......very very occasionally

HEAD/NECK/MOUTH
Dry chronic cough ....comes and goes

MUSCULOSKELETAL
Muscle pain, stiffness, weakness ......just the weakness

PAIN SYMPTOMS

Abdominal pain .....not "pain" occasional mild discomfort
Chest pain ...not "pain" very occasional mild discomfort


PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS
Appetite increase/decrease .....decreased, but has improved somewhat but still not 100%
Depression or depressed mood ....very mild
Feeling helpless and/or hopeless .....very mild
Helpless/Hopeless feelings .....very mild ...was used to staying busy getting things done
Inability to enjoy previously enjoyed activities .....likely due to tiredness and feeling out of sorts


SENSITIVITIES
Alteration in taste, smell, and/or hearing ....foods don't taste quite as good as they used to

SKIN / NAILS
Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
Rashes on body, face .....had rash and some swelling on lower leg along with rash where tick bite was on side

SLEEP SYMPTOMS

Abnormal brain activity in stage 4 sleep ......not sure
Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
Difficulty falling asleep Difficulty staying asleep (frequent and/or prolonged awakenings)
Hypersomnia (excessive sleeping)
Myclonus (restless leg syndrome; occasional jerking of entire body)
Unrefreshing/Non-restorative sleep

UROGENITAL / REPRODUCTIVE

Decreased libido
More frequent urination than usual ......since greatly increasing water intake to help with constipation
Pelvic and rectal pain .....not "pain" but occasional mild discomfort, probally from constipation and straining Prostate pain ....not "pain" but feel slight pressure in groin area
Swollen testicles .....one was swollen from when I had a strangulated hernia August 2014

OTHER

Abnormal or other changes in sweating .......night sweats
Activity level reduced to less than 50% of pre-onset level
Burning sensation (internal and/or external) .......eyes
Fatigue, prolonged, disabling, made worse by exertion or stress

I've been researching online and among others, Virginia T. Sherr, MD wrote an article on Gastrointestinal Lyme disease showing how much Lyme can mess with your gastrointestinal system.

If it wasn't for the tick bite with rash I might think it could even be diverticulitis or irritable bowl syndrome, but the tick bite / rash along with the various sudden symptoms make me think Lyme disease is much more likely, what do you all think ?

Thanks in advance for all your help !

Gary

Thanks Lisa ! .....any and all input is appreciated !

Hi Gary... Welcome to the forum

You are fortunate to have a pro-active doctor... it does sound very much like Lyme & Co...
There are some things you can do to help your system... be sure to read the "New To Lyme...Start Here" thread... also... here is a link with some more info about co-infections...
that you may also find useful. www.justinandchrista.ca/#!links/c1yng

Hi Gary!
Welcome to our community!! I'm so glad that you have done so much research already.

I would say with that list of symptoms, you should be seeing a specialist for these infections.

This test that your doctor ordered ("Lyme Disease Antibodies, Including Reflex to Western Blot on Positives") is almost certainly the ELISA - it's highly unlikely that it will come back with a positive result because it has poor sensitivity and misses 70% of those with the infection. If and only if you happen to come back with a positive result - then they will run a Western Blot, which even that will only catch about 50% of those that have the infection.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​

I normally offer to help find LLMD's as well - I have a list that I have compiled over the years, but I don't have any listings for South Carolina, sorry. If you would be willing to travel to see a LLMD (for instance if you have family/friends you can stay with), you can still send me an email and I'll be happy to see if I can be of help to you.

​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.​​www.ilads.org/lyme/ILADS_Guidelines.pdf​​

Thanks Traveler and Bellyfull !

Traveler, I'm not sure yet how "Lyme literate" my doctor is, but hopefully since she was proactive and started me on doxycycline immediately while still awaiting the test results is a good sign. From what I read should I request she extend the doxycycline from 2 weeks to 4 weeks ? Also, if that test happens to come back negative, specifically what test or tests should I request ? and should she do the same test again since I read where getting the test too soon might cause a false negative ?

Bellyfull, I'l check that constipation thread, besides Miralax my doctor also said to eat more and get some Youplait yogurt.

I retired some months back (I'm 62) my wife will retire in about 6 weeks, so at least I don't have to go to a job feeling like this, but there is yard work and chores I would like to try to keep up with but I tire so easily. Question - My priority is obviously to get well, so should I lean towards getting rest and taking it easy, keeping from doing too much, or should I push myself to still do strenous stuff like yard work ? (replies appreciated from anyone)

Gary

I am always searching & researching... it keeps me feeling productive
when i have to lay down (I can't stand laying down!)

But i can still use my laptop... Anywho...

I just came across something else (i tend to ignore advertising & ask
here for opinions if i am tempted to buy any books,etc...)

Having said that... i scrolled a bit down on this page and watched a
3min video... that i found inspiring... related to raw food & energy.
foodnsport.com/solution-lyme-disease/

*I am not there... but headed in that direction...because i think healing
the gut is an important consideration in the Lyme journey.

Some of my first symptoms - although I didn't know it was lyme - was constipation and bloating.

Magnesium Malate - to bowel tolerance taken daily should help with this. It relaxes intestinal muscle walls that are constricting. It helps with the energy cycle and muscle fatigue. Highly recommended in Lyme disease.

I take 2 capsules a day but did take more when I first started using it.

Tinidazole also helped me immensely with constipation issues. It kills the cyst form of lyme and is an antibiotic. Grapefruit seed extract is a natural way to kill lyme cyst forms.

My stool situation was not good - they were yellowed and would float and lots of oil on surface. Definite malabsorption. Gone.

Post Edited (SLML) : 6/10/2015 11:17:06 AM (GMT-6)

SLML said...
DOne of my first symptoms - although I didn't know it was lyme - was constipation and bloating.

Magnesium Malate - to bowel tolerance taken daily should help with this. It relaxes intestinal muscle walls that are constricting. Bit helps with the energy cycle and muscle fatigue. Highly recommended in Lyme disease.

I take 2 capsules a day but did take more when I first started using it.

Tinidazole also helped me immensely with constipation issues. It kills the cyst form of lyme and is an antibiotic. Grapefruit seed extract is a natural way to kill lyme cyst forms.

My stool situation was not good - they were yellowed and would float and lots of oil on surface. Definite malabsorption. Gone.

Thanks SLML !

Is Magnesium Malate and Tinidazole "over the counter" items or prescription ?

What is "Bit" ? (or did you mean to write "it" ?)

I'm not yet familiar with the "cyst" form of Lyme, is it more likely for those with bowel symptoms ?

Fortunately my stools have been brown, just smaller than usual, but not as small as a few days ago.

- Magnesium is OTC. Malate is my favorite form as it helps with muscle fatigue and the Krebs energy cycle. I order from Amazon. Any form of magnesium will help with constipation except magnesium oxide. It (oxide form) is cheap and only has a 5% absorption rate.

- Tinidazole is prescription and only usually prescribed by an LLMD and not by a primary care physician. Grapefruit Seed Extract is a natural alternative that is OTC.

Oops! Meant 'it'. Typing on my iPhone means I make several errors that I have to go back and edit. Fixed. And the DOne changed to Some. 😄😄😄

Post Edited (SLML) : 6/10/2015 11:17:50 AM (GMT-6)

Thanks again to everyone, I do read and appreciate every reply so if I don't reply right away please understand.

My doctor is not in today, but I've sent several messages to her thru the patient portal letting her know about your concerns, I believe she should be open to these ideas so I will soon see how Lyme literate she is or is willing to become so.

There are other questions I have that I'll post later, but for now, someone mentioned saurkraut as being good for Lyme related digestive problems, but does it matter if it is canned saurkraut ?

(I'll be checking on the other things people mentioned to take also)

Thanks for that info Bellyfull,

as far as the "good" probiotics to get for Leaky Gut Syndrome, ane recommendations that might be sold in Walmart (I just noticed on their web site they have quite a few listed). We live in a small town so there are not many places to shop other than Walmart, CVS pharmancy, a grocery store, ect.

(My bloating, lower abdomen discomfort, low energy symptoms, today is starting to include smelly flatuance)

Traveler said...
I would suggest kefir for a probiotic. That's all I've used while in treatment for these infections - and since I live in a very small town myself, I know that Walmart carries it!! LOL!!

You only need to drink 2 - 4 ounce a day to get a lot of strains of good bacteria for your digestive system.

Thanks Traveler ! (yep, small towns have both their advantages and disadvantages, but little traffic is a definite plus )

Is Kefir the brand name ? (I put kefir in the Walmart seach and I didn't see anything named kefir)

Look for Lifeway brand kefir. In my local Wal-Mart, it's back near the alternative milks - such as almond milk - and the coffee creamer.

You can see if any stores in your area are listed here:
lifewaykefir.com/where-to-buy/