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
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
.................................................
Breaking up some of your post for easier reading for many here -
[ 06-10-2015, 05:16 AM: Message edited by: Robin123 ]
Posts: 12 | From South Carolina | Registered: Jun 2015
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With Magnesium, you may not need Miralax (polyethylene glycol 3350) -- be sure to NOT take Rx near Miralax. Better to use magnesium if you can, anyway, rather than something that is petroleum based. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- "night sweats"
"Dry chronic cough"
"Cough Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion".
Very typical of BABESIA, another tick borne infection. As LymeToo suggests, you should be assessed for coinfections, other tick-borne infections as lyme rarely travels alone.
Antibiotics do not affect babesia, though. It would need. different classification of medicine, in combinations, never just one alone.
Avoid any synthetic night clothing or sheets -- all cotton is best (at least next to your skin). And avoid any chemical treatment on the fabrics such as "wrinkle resistant" as that's really telfon.
Certain lotions can make this worse, too, if oily -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- "not sure how long the tick was on me"
Does not matter. Even any break in the skin by the tick is what matters and can spread infection. Do not buy that myth about a tick being required to be attached for some ridiculous number of hours.
Any tick attachment / bite should be taken seriously regardless of time attached.
Glad you have sought care and have started on your path, even if it may turn out to be more intricate than you might have planned. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Quick of SusanK to suggest getting a photo of your rash. In good light (natural light if possible), several angles.
Lyme Disease; Comprehensive overview covers symptoms, treatment, diagnosis and prevention of this tick-borne illness.
. . . rashes can mimic spider bite, ringworm, or cellulitis. Multiple, so-called “satellite” rashes may appear on different parts of the body. . . .
Judie posted this Feb. 2015:
Mine was a raised, round blob, not like a bullseye at all. This article may be helpful. It describes EM rashes. (end Judie quote) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- LymeToo covered some of this.
Doxycycline cautions:
1. avoid sunlight on your skin (even "bounced" sun or through a car window) even for weeks after course is done (but, really, lyme treatment should cover months, not just weeks).
2. Food with doxy, in the middle of a good meal. But no dairy. Do not take with any multi minerals, either.
Protect stomach but do not take a PPI - proton pump inhibitor (they have some negative effects).
3. keep torso as close to upright as possible for at least 30 minutes after doxycycline taken so as to help protect esophagus from the irritation it can cause if lying down.
Depending upon the angle of the particular chair, the most upright position of a recliner MIGHT be okay if you must rest your head or put your feet up, just don't slink down.
posted
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
Posts: 12 | From South Carolina | Registered: Jun 2015
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posted
I'm out for the afternoon.. but another quick note: Get some good probiotics and take them at least 2 hours away from the doxy.
That may help your digestion and protect you from candida.. which can be AWFUL.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
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- Ditto, loudly to Probiotics.
I'm sorry you are having so much gut trouble. Can't read your whole post (many with lyme need some "breathing room for the eyes" with space breaks) but I hear you loud and clear about the gut. I had terrible trouble. Becoming gluten free was a great help.
Now is an excellent time to go ahead and become gluten free. That may help a great deal.
Most LLMDs strongly urge patients to be gluten free for various reasons.
1. Lyme can trigger a genetic celiac (so you may want to explore testing, asking about blood relatives in your family and any gut / brain issues)
2. Lyme can cause "leaky gut" due to the spirochetes invading the lining of the stomach, GI tract. Leaking gut sets one up for all kinds of trouble. Gluten just makes that worse.
3. Treatment can also be rough on the GI tract, so the best protections are vital (such as probiotics, no alcohol or fizzy drinks, no chemical-laden foods, etc.)
4. In anyone, especially "modern" wheat can cause issues, too. Detail further down in this set:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Also be sure to include at least 2 kinds of vegetables with each meal, even breakfast - lightly steamed or in soups good.
Veggie juices are good if you make them yourself, just add back in substantial amount of pulp and keep the servings reasonable, like 4-6 oz.
And, of course at least one veggie with each snack. Nuts, too.
Are you getting enough good fats, too? Cod Liver oil / Fish Oil are important. From good clean sources. Carlson's is one that is good. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- MAGNESIUM is still the best helper - and various kinds for various purposes. That link is in a post above. We need it for so many reasons, anyway.
posted
Find yourself a LLMD asap. You have lyme from the rash and based on your symptoms probably a co-infection as well. You need to be tested for bartonella and babesia. Do not wait, you were recently bit. If you have to travel out of state to find a doctor do it, do not wait.
The doxy dosage you have is too low. You should be at 200 mg every 12 hours. Make sure to take tons of probiotics.
Both my husband and child were bit by ticks and received treatment with in 10 days. Even so they were on abx for many many months. This is no joke, you have to take this seriously. Just start reading everything you can find.
Good luck, I wish you the best.
Posts: 160 | From somewhere | Registered: May 2010
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Keebler
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- Big echo here for KH111's advice -- so that this does not get missed, LymeToo posted this in the first reply.
Stuff I posted is more in response to your immediate questions for how to manage while you sort out proper LLMD / treatment.
Informational Links that LymeToo suggests so you can find the right kind of doctor, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
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)
Posts: 12 | From South Carolina | Registered: Jun 2015
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Keebler
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- Cans are not a good idea as if tin the metal leechs - if plastic lining that leeches petroleum chemicals that are endocrine disruptors. If the lining of the can is BPA-free, that is better but it's still plastic, really. And plastic is best avoided.
In a glass jar is best, with no chemical additives. But glass jars with something that can get gassy can dangerous, so you may not find many glass options. If you do, keep it cool and the glass protected on the way home.
Some come in a plastic pouch, though (be sure it's at least a BPA free pouch), and if no chemicals in it and the best you can find, put it in a glass jar in your fridge after opening.
Look online before you go to your market to compare ingredients so you don't have to work so hard in the store. Organic is best.
You can make your own, too. That would be best and likely the most delicious, too. -
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Keebler
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- Your doctor may not be "allowed" to do more even if she may have a glimpse into the ILADS world (most doctors will discount that).
If she has bosses, if she is with a university clinic, there is less chance she would be allowed to entertain "notions" beyond the IDSA mindset.
As she obviously is somewhat aware, you do want to keep her in your corner even if just as your GP (even if limited in how she can help with this) so just be aware of that as you proceed.
Don't advertise if she does help you beyond this point, though. I'd not even tell staff, really. Some can walk a very fine line.
Your local lyme support group may also have suggestions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Keebler: - Cans are not a good idea as if tin the metal leechs - if plastic lining that leeches petroleum chemicals that are endocrine disruptors. If the lining of the can is BPA-free, that is better but it's still plastic, really. And plastic is best avoided.
In a glass jar is best, with no chemical additives. But glass jars with something that can get gassy can dangerous, so you may not find many glass options. If you do, keep it cool and the glass protected on the way home.
Some come in a plastic pouch, though (be sure it's at least a BPA free pouch), and if no chemicals in it and the best you can find, put it in a glass jar in your fridge after opening.
Look online before you go to your market to compare ingredients so you don't have to work so hard in the store. Organic is best.
You can make your own, too. That would be best and likely the most delicious, too. -
thanks, too tired to try to make my own right now, but I'll check into the glass jar option.
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Keebler
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quote:Originally posted by Keebler: - Your doctor may not be "allowed" to do more even if she may have a glimpse into the ILADS world (most doctors will discount that).
If she has bosses, if she is with a university clinic, there is less chance she would be allowed to entertain "notions" beyond the IDSA mindset.
As she obviously is somewhat aware, you do want to keep her in your corner even if just as your GP (even if limited in how she can help with this) so just be aware of that as you proceed.
Don't advertise if she does help you beyond this point, though. I'd not even tell staff, really. Some can walk a very fine line.
Your local lyme support group may also have suggestions. -
We live in a fairly small semi-rural town so it might be more likely (hopefully) those concerns won't be an issue. Good idea about seeing if there are any Lyme support groups nearby, Thanks !
Posts: 12 | From South Carolina | Registered: Jun 2015
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quote:Originally posted by Lymetoo: Gary, do you have any health food stores near you?? Or access to one in a nearby city?
They often will carry "Bubbies" brand sauerkraut. Or you may be able to find a product called Kevita, which contains probiotics also.
Your local grocery store may have a good quality of Kefir, but do watch for the sugar content. Stay away from anything with a lot of sugar.
Thanks Lymetoo !
No health food stores nearby that I know of and I rarely get to the closest large city because of travel time.
We have a Walmart, CVS pharmancy, a grocery store as far as stores that might carry those things.
Is Kefir a brand name ?
Posts: 12 | From South Carolina | Registered: Jun 2015
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TF
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Gary, don't expect your bowel trouble or any of the other symptoms to improve until you get yourself to a doctor who specializes in lyme disease.
That means, his entire practice or nearly entire practice is lyme patients.
You see, lyme is an extremely complex disease. Few doctors know much about it. So, you have to get yourself to a doc who has seen hundreds or thousands of cases. That is the doctor who will be able to tell you whether or not this is lyme and be able to give you the correct treatment.
Lyme disease is nothing to take chances with. It can steal your life. So, if at all possible, get to a specialist.
Expect to travel out of state to find such a doctor. If you get to one quickly, you could start feeling better in weeks or a month, but treatment could last months.
If you are willing to travel to the D.C. area, I can give you the name of such a doctor who can see you in a few days.
Why not contact the lyme support groups in your state and talk to others about where they go for lyme treatment. See Support Groups on the left side of the page.
I have been around this disease for at least 13 years now, and from what folks in your state and others tell me, there aren't many lyme doctors below Washington, D.C. The best ones are near large cities, as you might expect.
So, if you see the wisdom of jumping on this right away, let me know and I will send you the name.
As others have said, it takes the body 4 to 6 weeks generally to produce antibodies to lyme disease. The test your doctor did was looking for antibodies, so it will almost certainly come back negative.
That means nothing, of course. That is what happens when the patient just contracted lyme.
To educate yourself about all of this, I strongly suggest you read the Burrascano Guidelines found here:
They are also at the top of Medical Questions here on LymeNet. This document will give you an education on the disease you now have.
Here is a quote for you:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms.. . .
After a tick bite, serologic tests (ELISA. IFA, western blots, etc.) are not expected to become positive until several weeks have passed.. . . You should not miss the chance to treat early disease, for this is when the success rate is the highest. Indeed, many knowledgeable clinicians will not even order a Borrelia test in this circumstance." (page 7)
Posts: 9931 | From Maryland | Registered: Dec 2007
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Check out my PM to you. you should be on 400'mg doxy per day, that's 200mg every 12 hours
Posts: 532 | From Texas | Registered: Oct 2004
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posted
Gary, look for Kefir in the area where they have yogurt at the grocery store. Right now I can't think of the usual brands, but you will find it.
Wal Mart probably has some. I don't tolerate it myself, so I don't even know for sure. Most people tolerate it just fine.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I got the Kefir today, not crazy about the taste, but as long as it is effective thats ok !
Posts: 12 | From South Carolina | Registered: Jun 2015
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posted
I had updated someone by email, 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
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Keebler
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- Treatment is not adequate. I'm sorry but with the severe fatigue and night sweats you describe BEFORE even starting on the low dose doxycycline,
the RASH (which was very distinctive in your case, after a tick attachment and the rash development right at the attachment site)
it certainly sounds like the very low dose treatment is not adequate.
But even a rash may not always be the worst strains of lyme.
But your SYMPTOMS are a clear indicator, especially starting so soon after attachment.
*** In my mind, there is absolutely no doubt that you have at least one tick borne infection. Symptoms are classic and the timing cannot be coincidental. ***
It's not likely to be tamed with a mild approach that is not truly strong enough.
Why the concern about such low dose, with only one Rx?
One. See p. 13 note in post below - Bacteriostatic vs.
Another MAJOR thing: CYSTIC FORM - no attention has been given to how any antibiotic can cause lyme to go into the chronic form as it "morphs" into the cystic form and antibiotics don't touch lyme in that state.
You could be feeling better as even low dose doxycycline can lower the circulation spirochetes enough (killing some yet those that go into cyst form can spring to life later, with many more spirochetes - when cysts just "rest" one can feel relief).
The dose is too low if ehrlichia might be on board and won't address possible babesia at all.
But any treatment needs to be combination.
I'm so sorry you are dealing with these symptoms
sorry that you come to a web board to help learn more and are faced with so many of us who have been there, done that, failed terribly . . .
yet your doctor, your DOCTOR (definition: a highly educated person of trust) tells you all is well. But most doctors are NOT educated in lyme & tick borne infections. Most have wrong information or just bits and pieces.
Waiting to see what happens. Might you get lucky? Might your body actually take care of the "rest" of this? Not likely as lyme disables the immune system in some very sly ways.
But it could be possible. Or for long enough until some stressor "wakes" up the cystic form that was allowed to develop without proper combination Rx.
But BABESIA, which could well be on board, may not stay quiet.
Waiting to see what happens is no way to bet on the future, believe me. Again, too many of us have been there, done that, and became disabled and very ill for decades.
You have the advantage of addressing this early.
Yet, the disadvantages of no truly lyme literate MD. I hope there is some way to find one very soon.
I wish I could offer you more assurances or even suggestions for what now, while you wait. My best suggestion is to not wait. Get active in learning as much as you can and locating an expert who is truly educated in this matter. Now.
Start with any area or state lyme support groups.
You need to be assessed by a doctor properly educated in tick borne infections.
In the meantime, be sure to
be aware that babesia can be very hard on the SPLEEN [correction, I had written "pancreas" earlier]. If for some reason, you do not have a SPLEEN (accident / surgery) or if it's in anyway not up to par, this is of utmost concern.
avoid alcohol totally [for a very long time, actually . . . well into a time where are certain of stable health -- alcohol can be a killer for those with lyme, literally]
avoid aerobic exercise but do keep up with walking, light weights or Qi Gong or Tai Chi sort of exercises.
Get sleep, do not skimp on any aspect of healthful living. And do enjoy feeling better as you say you are right now, any degree of better is nice. But do not overreach your endurance.
Do not get overheated, either.
Let your body feel good if you feel good. And if that shifts, just know that you are still in the early days where you have a better chance as figuring out the options.
I'm sure all here WANT you to get better now and stay better, just as you want that. It's just that where tick infections are concerned, we must get highly educated very fast. No time for anything less.
Best of luck. -
[ 06-11-2015, 07:45 PM: Message edited by: Keebler ]
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Keebler
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- The link I have needs refreshing but so do I. So, find Burrascano's Guidelines (for so many reasons) but regarding the dosage:
Go to page 13, the last paragraph:
Bacteriostatic vs. Bactericidal -
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Keebler
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Lyme Disease.org - excellent educational & resource / connection site -
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Keebler
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Member # 12673
posted
- STARI is also something to consider. It's a different strain of spirochetal infection (if I recall correctly) yet can be just as complex & devastating.
More common in the south-eastern states.
As with lyme, though, most doctors are not well educated about this so best to discuss with an ILADS educated lyme literate MD (LLMD) or a LL ND (naturopathic doctor).
Do NOT rely on information from IDSA, CDC or NIH on any tick borne infection. Articles in the first link posted for you by LymeToo will explain why.
posted
Thanks, I do appreciate the concern, the only likely way to get an increased dose is IF there is an LLMD close to central SC as I am needed to watch my wife's elderly mom with Dementia since my wife is still working, so I am very limited in my traveling distance.
Otherwise I simply have no choice but to hope mine gets cleared out since it was caught very early, which I have heard of cases that cleared up quickly when caught real early.
Posts: 12 | From South Carolina | Registered: Jun 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Understood. But it's hard just let this go on "hoping" it will just go away - that's a tricky gamble. So, if you are open to it, consider learning about alternative approaches.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
Go to the "How to Find a LL ND" link. Many articles / books / RIFE thread on other ways to approach if a LLMD is just not possible.
You might start with BUHNER's books. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Could you at least ask your doctor for flagyl, so that the cystic form might be addressed now, when it's the most important time? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
flagyl is new to me and I still might try again to convince my doctor to up the dose and weeks.
how effective are the alternative approaches ?
Posts: 12 | From South Carolina | Registered: Jun 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Gary, to see how debilitating lyme disease can become, view "Under Our Skin" (for free) on www.hulu.com
I believe that once you and your wife view this, you will then see that you really should find someone who would be willing to stay with your mother-in-law for a few days so that you can travel to get treated by a lyme specialist.
After the first in-person visit, you can do monthly telephone or Skype visits. That is how lyme patients get treated by doctors many states away from them.
You will have to appear in person about once every 6 months.
Learn all you can about lyme disease so you can make educated decisions about your health. Life is nothing if you don't have your health.
Lyme can steal your brain and has stolen it for many people who are personal friends of mine. Lyme always eventually attacks the brain.
In fact, there is evidence now that Alzheimer's can be lyme in the brain.
A brain is a very sad thing to lose. Lyme made my life a living hell for years until I got to a good lyme specialist. Don't want that for you.
The sooner you start treatment, the quicker the treatment. The longer you have had lyme, the longer the treatment to get rid of it and the lower the chance of getting rid of it.
These are the things you have to know about this disease. Read all this in Burrascano Guidelines.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
My wife's mom has Dementia and she could really freak out if we were not around for more than a few hours.
Anyhow, since my doctor does seem to really care about her patients I sent her a bunch of info from the The International Lyme and Associated Diseases Society web site so she will realize there are things she still needs to learn. If everyone started sending ILADS info to doctors we should be able to increase the number of LLMDs.
Posts: 12 | From South Carolina | Registered: Jun 2015
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posted
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
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