Awaiting test results - think I have Lyme ?

[GarySC500]

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

[GarySC500]

ALSO - Let me share this -

I was doing a search online to find other people's experiences with Lyme and found one very interesting one.  

Now before I post it and the link let me say I understand that not everyone is religious and may dismiss this person's experience and that is their choice, no hard feelings, but let me also say that most religious people realize doctors and medicine are ok to use as needed, but also realize that sometimes God chooses to heal supernaturally (I personally know a person that was given 6 months to live from terminal cancer, he got prayed for, God healed him and he is still around today and that was over 40 years ago,I think he is in his 80's now)  

anyhow, check out this person's experience, I'll paste the quote and the web site I found it at doing a search -

    When I was 16, I was diagnosed with severe Lyme's Disease. Doctors said that my count was so high, I should have had brain damage and many lifelong symptoms! Through faith, I went before my Pastor and the elders and let them pray! The doctors were astonished that it was ALL GONE at my next appointment! Thank you, Jesus!
    C. B., Bristol    

    .......found the following web page -   http://www.heritageupc.com/about/

[GarySC500]

I forgot to reply earlier, at this point I'm not sure it's leaky gut, I'm now wondering if it is just a side effect from the Doxy meds.

The abdominal bloating and discomfort was a LOT less today !

Anyhow I do appreciate your suggestions, one thing I bought today was Kefir, a probiotic to help restore the good bacteria the Doxy likely diminished.

[GarySC500]

Thanks Jackie, I really appreciate your encouragement !

Yesterday (meaning Wednesday) I was feeling somewhat sluggish, but no where close to the extreme fatigue of last week, and today (meaning Thursday) I felt the most energy and most overall well since this started, not 100% yet, but what a big difference from last week when it first hit !

[JackieCalifornia]

This is good news!  Glad to hear it.

If, when the current medications are done, you don't feel pretty near to normal again, then revisit the possibilities, including that you could have had a low-level Lyme (or other) infection before something was big enough to trigger stronger symptoms.  

Lyme bacteria aren't picky about who they bite, so it's possible that you could have had Lyme or another tickborne infection that was at a low level and wasn't noticed by you ... then when you got the current bite(s) and the docs got involved in diagnosis and treatment, it was assumed that this is your initial infection and has been treated as such.  

After your current treatment is done, if you do not feel back to 100% pretty soon, consider that there may have a different, sneaky infection that was already in place for you, but your immune system kept the symptoms to a low roar.  If that's the case, then the meds you are currently on might or might not be effective against the phantom bug.  

Not saying this *will* happen, but just that it could, and if you're not up to par pretty soon after the current treatment, then I would go back to the doc for another look-see and consider some additional testing in case something was lurking through all this and not killed off by the current meds.

I myself had no tickbite, no rash, no nothing, except that I got ill.  Same thing for another of my family members.  It took quite a while for us to be diagnosed finally, and we both had Lyme and babesiosis.  So it happens.  

I hope this does not occur with you, but just sayin'.  Keep a weather eye as the old sailors used to say.

[GarySC500]

I updated someone by email today and will paste some of it here as an update to you all -

My doctor here in Winnsboro, SC believes we got it early enough that it should be able to be cleared up with 14 days of Doxy 100mg twice a day.

She was even proactive to immediately start me on it the same day even before the blood was sent to Labcorp for testing, she said she would assume Lyme based on the symptoms alone along with the fact that there was a tick bite about a week before.

The results came back negative (I'll post them further below) but I read that a negative result is not unusual when the testing is done so close to the tick bite.

I'm not 100% by any means, but I do note a big improvement over last week and I have only been on the Doxy for 5 days so far.

I haven;t had the bad night sweats with chills since Saturday night and my appetite has improved noticeably from last week.
,
My energy level is not back 100% but it is a lot better than the extreme fatigue of last week, yesterday I was on the tired side and feeling :"blah" like I didn't want to do any more than I had to, but today I actually felt the highest level of energy since before this started.

Note: I heard the the Doxy itself has possible side effects including fatigue, lower abdomen bloating and discomfort, ect so at this point it mighe be hard to tell how much of my remaining milder symptoms is from the possible vLyme or co-infection and how much might be from the Doxy itself.

My doctor told me let's see how you feel after the 14 days of Doxy and take it from there.

Since we caught this early soon after the tick bite do you think there is a good chance it will be cleared up without becoming chronic ?

(I have heard of cases where it was cleared up quickly when caught early)

I got some Kefir today on the recommendation of others as far as a good probiotic.

Here are the test results -

Name Value Reference Range
Lyme IgG/IgM Ab <0.91 0.00-0.90 ISR
Lyme Disease Ab, Quant, IgM <0.80 0.00-0.79 index

Thanks !

Gary

[mojogal]

I have leaky gut, it's from the Lyme. I basically had to do an elimination diet on my own. Everyone is different but for me, giving up all carbs is the only thing that helped me. I am on a very low carb way of eating and my bloating feeling is finally gone. That is why the LLMD many times tells you to give up gluten, dairy, sugar because they cause inflammation. I had to take mine a step further.
Good luck

[JackieCalifornia]

Have you called your doc's office?  

Another possibility is that the antibiotics have killed all the bacteria (good and bad) in your digestive tract.  Are you taking probiotics to replenish the 'good' bacteria?  Some docs don't take that seriously, but others do.  

If that's the issue, there are two ways to replenish the good bacteria:  either a yeast-based probiotic, which is not affected by the antibiotics, or a non-yeast-based probiotic such as acidophilus.  If you take the acidophilus, it has to be spaced a certain length of time from the antibiotics; otherwise, the antibiotics kill all the acidophilus, and it's a zero-sum game.  

Note that the yeast-based probiotic (one is named Florastor) can rarely cause a systemic fungal infection in those susceptible to fungus.  I am one of those, and it wasn't pretty.  Just fwi.

[GarySC500]

Thanks for the reply Jackie !

It's just that besides the ongoing tiredness, the symptoms bothering me the most right now are bloating and discomfort in the lower abdomen.

From what I read elsewhere it might be that either the Lyme or the doxycycline itself could have given me Leaky Gut Syndrome as those symptoms do go with that.

[JackieCalifornia]

I wouldn't focus on one part of the body:  Lyme and its co-infections affect the whole body, and when the infections are eradicated, the rest tends to fall into line.  Think big picture.

[GarySC500]

Thanks for each and every reply, they are all very much appreciated !

I know Lyme can affect people differently and symptoms can come and go and not everyone has the same list of symptoms.

I had the "night sweats" with chills I think 3 nights at the start with the last episode Saturday night where I was awake most of the night also, but I haven't experience the "night sweats" and chills since Saturday night.

My main symptoms now is the continued feeling of tiredness, low energy and stamina, even after sleeping all night, though it is not the extreme fatigue I felt the first few days, also in the morning when I first wake up but still stay in bed for a while resting I can feel that shallow breathing for a while and even have a couple times where I feel like I have to initiate my breathing again.   The most annoying symptoms though are the gastrointestinal ones, having to take Miralax to not be constipated, feeling bloating and mild discomfort in the lower abdomen.  When the initial constipation first hit the first BM I had before taking Miralax was very hard and difficult to pass, then when the doctor recommended Miralax it took about 3 to start seeing results, at first it was very small stools in small bits, then I had some very narrow stools, now my stools have gotten larger. about the size of large cigars, maybe slightly larger, but still not yet quite as big as I used to have.  

I have read where Lyme can mess with your gastrointestinal system, and cause constipation, bloating, lower abdomen discomfort, even symptoms simular to diverticulitis or irratable syndrome.

Those of you who have had simular symptoms tell me about your experience, treatment, how long before your bowels got back to normal or if it's still on the mend ?

Thanks !

Gary

[mojogal]

Ditto everything Jackie said but I want to add that 14 days of doxy is not enough. They say for a new bite at least a month is needed. I never had a rash and they are now saying the tick doesn't have to be on you very long at all to get the disease.

It's also important to find a Lyme Dr now so that you don't have to suffer more with symptoms that just get worse. You may also have co-infections which an LLMD should be able to know.

Good luck.

[JackieCalifornia]

I think we're going to call you 'Dr Gary'!  Your observations and analysis are nicely done.  It will be interesting to hear your doc's thoughts, but if the doc doesn't pursue the possibility of Lyme and/or its potential co-infections, and if the doc doesn't promptly try to figure out what you DO have, then I would be looking quietly for a Lyme specialist for a second opinion.  

There is a strange split in the medical community about how to diagnose and treat Lyme, and the patients are often caught in the middle.  Dr Sherr is well known in the Lyme community as being one of the good docs who really understands Lyme and also is aware of companion infections carried by about half the ticks that carry Lyme.

There is an organization called the International Lyme and Associated Diseases Society (aka ILADS, pronounced EYE-lads), and seeing an ILADS member doc is a good approach in my experience and that of others here.  ILADS, based in NYC, has a referral desk that can send you the names of ILADS docs near you.  I would get some names from ILADS, then also snoop around a bit online to see what others might say about the docs you have located.  There is no test I know of for a doc to become an ILADS member, which means there can be some odd docs who sign up for membership; word to the wise.  (My own Lyme doc was [is] an ILADS member, and he is great.)

You can post a new question here on this site, titled something like 'Need LLMD near [Charleston], So. Carolina' or wherever you are.  Ask in your post for anyone with a recommendation to send you a 'private message' through this website, so that the doc's name is *not* posted in public.  (There are too many states and areas in which the local and state medical boards try to stop Lyme docs from diagnosing and treating  Lyme as ILADS guidelines indicate, so we tend to be very protective of our docs.)

About the doxycycline your doc gave you, that is (from what I read) a good first step when Lyme is diagnosed (or strongly suspected) very very soon after the initial tick bite -- the problem being that many of us don't know when we were first infected.  I never saw a tick on me, and never had the famous circular red 'bullseye' rash, as many of us do not.  

Note also that doxy may not be effective against Lyme if treatment does not occur very very soon after the initial infection and may well not be effective at all on co-infections (which are other diseases often carried by the 'Lyme' tick).  There are other meds and combinations of meds that *are* effective against co-infections, however, and that's why it's important to find an enlightened MD to get the diagnosis and treatment right.

If you are up for reading, the book 'Cure Unknown' by Pamela Weintraub is a good explanation of the mess that much of the medical world continues to make when it comes to Lyme -- there are also some documentaries that may be of interest to you, including one focused on 'Cure Unknown'.

I have read that Lyme can be transmitted sexually, tho the CDC tends to deny it ... which is pretty much par for the course when it comes to the IDSA and CDC.  The docs who first diagnosed Lyme a few decades ago decreed early on that Lyme was rare, hard to get, and easy to cure with a few weeks of doxycycline, and any remaining symptoms were simply over-reaction by the patient's immune system, not the continuing harm from the Lyme bacteria who evade the human immune system and antibiotic treatment.

This is a lot to absorb, I know, esp. when you may not be feeling well, but the sooner you are properly diagnosed and treated, the sooner you are back to your old self.  Best wishes to you, and let us know how it goes, okay?