posted
I tested positive for Lyme(WB)in August. I saw an infectious disease dr. in Sept. who doubted the results and said I had an over sensitive system (due to my many symptoms).
I could not afford to pay out of pocket to see a LLMD and had a dr. cancel my appt. after waiting a month and a half.
Out of desperation I decided to see an ID dr. where I live even though almost everyone here said it wasn't in my best interest.
Well, I wish I would have seen him in August. He spent an hour and 15 mins w/ me. Listened to every word I said.
Took 4 pages of notes. He said I could have a false positive for LD, but many of my symptoms were that of a LD patient. He did NOT say I did NOT have it.
He ordered another Lyme test through Mayo Clinic to compare to the Lab Corp results.
He left the room for about 10 mins. to gather his thoughts and notes. He even called my dermatologist to inquire about a fase rash I have had for years.
When he returned he explained the 18 blood tests he was ordering on me.
He said once these results came back he would call me and we would go from there. I was blown away at how patient, kind and thorough he was.
I looked up all the tests he ordered on me and he is checking for many automimmune, connective tissue and collagen diseases as well as Hepatitis B & C,, myeloma and wheat gluten sensitivity.
I've had puzzling symptoms for so many years and he is the first dr. I've had that didn't look at me like I was a hypochondriac.
So, don't knock the ID drs. I appreciate how thorough he was and that he didn't jump the gun on the LD just yet.
Posts: 412 | From Virginia | Registered: Sep 2010
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steve1906
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Hi One4islands, I'm so glad you had such a positive doctors visit.
You are one of the very few that I have heard of with a positive ID doc.
Keep us updated on your blood results.
Good luck!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Well, what will he say when the Mayo test comes back negative? Why, if you already have a positive lyme test, would he need another test? Doubting that he is a clinical diagnosis guy, even if all your symptoms correlate with lyme. And I would have been more impressed if he had included any coinfection testing.
If he does decide you have lyme, and this is not likely, how much treatment will you get? Four weeks and then you are cured?
Think it is premature to celebrate.
Do you have any insurance?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I have insurance, but no out of network coverage which I why I had to see a ID dr. in the first place because the LLMDs charge more than I can afford w/o going bankrupt.
Keep in mind he did not say I didn't have LD, but he is checking into other tests as well which pleases me.
I checked all of the extensive testing he ordered and my symptoms match many of these illnesses he is trying to rule out/confirm.
The girls in the lab said he was the best and very thorough and I have talked to others with rare illnesses that he helped solve.
I will post my upcoming results and follow-up with him.
My gut instinct has always been right and I feel this dr. is a great choice.
Posts: 412 | From Virginia | Registered: Sep 2010
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steve1906
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posted
Keep up your positive feeling!!! He could very well find other illnesses you have other than Lyme Disease.
I understand what Lou is saying. You may need long term antibiotics (for Lyme and co's) and most ID's doctors do not prescribe them.
Thinking positive is a cure for everything
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's great that he is kind and offered respect. However, he may not be educated enough to see you to wellness.
Mayo does not do the right lyme tests. Be aware of that.
And, with western blot, there are no false positives, in the presence of clinical symptoms.
Yes, it is good that you are being assessed for other things but he's not at all properly assessing you for lyme by sending the test to Mayo. He's guaranteeing a false negative.
Did he test for any other tick-borne infections? For other chronic stealth infections?
Be aware that the auto-immune tests can be disturbed by lyme, too. They often can be misinterpreted by someone who is not lyme literate.
Several other tick-borne infections can produce a rash. Most dermatologists are uneducated in this field.
Sorry about all my notes. Really. I'm afraid you are not in very good hands, even if he is a very nice guy. Good luck as you find the best path. Please consider all the detail below.
==================================
Match this and the link below (Dr. C's detail) to the Mayo results to come - and then, be sure to still consider your current positive Western Blot.
Pay particular attention to what bands were tested at Mayo. The blood draw date, the actual lab test date, days in between, etc. ------------
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C May 18, 2007
Excerpts:
[in speaking of acute cases of just lyme, diagnosed and treated early] " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . .If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
Somewhere there is detail about the immune system dysfunction and how that can affect the immune tests. If your immune tests come back off base, steroids may be suggested.
It's vital to know to AVOID STEROIDS.
Also, you may be urged to get a LUMBAR PUNCTURE (spinal tap). Those are NEVER a good test for lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- one4islands,
I totally get the cost factor in seeing a LLMD. And the location, etc. Totally get that. However, there may still be a doctor in your area who could help. Be sure to stay in touch with all your regional lyme support groups - ask everyone about doctors - and other ways they've seen any positive changes. ---------------
posted
Thanks Keebler. This is a start for me. Once these results are in and I have another appt. I will certainly bring up the LD and co-infections.
I am one of the many people out there who does not recall a tick bite or rash. My mother says when my brothers and I were elementary age we had ticks, but doesn't specifically remember whether I did or not. I know you can get a bite and be unaware of it. I will print off a list of the tests that all LD patients should get (from your posting above) and show that him. If he blows them off, I will know he's not the dr. for me.
I have found no help in regards to finding a LLMD in my area through the many LD links. None of the drs are taking new patients or don't take my insurance.
I've got a good head on my shoulders and am informed. We will see where the next steps lead.
Thanks to all for your replies.
Posts: 412 | From Virginia | Registered: Sep 2010
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RDaywillcome
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Member # 21454
posted
I had an I.D. doc and took antibiotics for ten years, so that's not true for ALL I.D. docs.
Mine also took insurance. Sounds like you found one of the few who works for us. Good luck.
[ 11-12-2010, 01:36 PM: Message edited by: RDaywillcome ]
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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posted
I have a good friend very ill with LD- within 4 months went from being physically active to bedridden.
She sees an ID dr. who put her on IV antibiotics w/in two days of her visit. I saw another dr. in that practice and he wouldn't acknowledge that I had LD. Funny how two drs. in the same practice can treat so differently.
I tried to switch to her dr. and they told me they didn't allow "dr. hopping".
Posts: 412 | From Virginia | Registered: Sep 2010
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posted
I'm very glad for you that you had a positive experience with this ID doctor. Mine was a nightmare. A literal nightmare.
He told me basically that I had Lyme disease at one time, do NOT have it now, and the damage is done. That I just have to live with what has already happened.
Wasn't concerned about any of the symptoms I have. I waited for TWO HOURS just to see him. My appt. was at 10:30..I was advised to be there at 10..and he walked into the exam room at 12:29. No apology for keeping me waiting, nothing.
He was rude, disrespectful, and condescending. I think maybe if a man had been with me, he might not have treated me as badly. Maybe.
At any rate, you seem levelheaded about this whole thing, and it sounds like you've done your homework. I hope this doctor works out for you.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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Tincup
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posted
4 said... "So, don't knock the ID drs. I appreciate how thorough he was and that he didn't jump the gun on the LD just yet."
Think positive, but don't get so full of him that you crash and burn later when you learn what he will do or not do for you.
I am sorry to say this is a fairly classic ABLS set-up in the making. (Anything But Lyme Syndrome)
I could be wr-wr-wr-wr-wr-wrong ...
But usually on this topic I'm not... neither are the others who have spoken above.
The oldies here, the ones above that have tried to explain to you what could happen, know what they speak about, for sure.
Clues from your post- The tests for autoimmune disorders. Ask yourself, are autoimmune disorders even for real or just another money maker for Institutions to get $$ for research studies?
Think about it... your body decided out of the blue that it doesn't like you anymore and is reacting to that notion for no known reason? Huh?
BTW- LLMD's also order tests to rule out other possibilities, especially coinfections, which again I will point out are not in this mix.
Clue #2- Hold the Mayo Clinic- and I am NOT kidding!
Over many many years we've only ever had ONE person here show positive at Mayo Clinic. ONE out of hundreds of thousands of people. If you are positive... you'll be the second one that we've known about, ever ... and it could be written off as a "false-positive".
THEN you can be in BIG trouble. This is one of the main reasons not to play in the sandbox with ID docs, especially if you are counting on using insurance sometime in the future.
Once the ID doc and the Hold the Mayo Clinic say/prove you don't have Lyme by using those crummier-than-crummy tests and their bad guidelines... that's it.
No one (doc) will counter the Hold the Mayo Clinic opinion (they'd be a fool to try-look at what happened to Dr. J in NC/SC/DC).
And your insurance company will be out dancing in the streets for not having to pay anything more for you for Lyme in the future because they will say tis true, tis true- you have ABLS, not Lyme! And they will say Hold the Mayo proved it!!!!
Then there is the treatment issue. Will he prescribe the "standard" IDSA protocols? If so, nice is nice, but it doesn't bring home the bacon.
My guess is .. and I have not seen a list of your symptoms... that he is looking to explain away late stage symptoms ... with the collagen and connective tissue disease tests he is running (remember, no known cause, no known cure for those).... specifically skin manifestations... (check out pics here)
And looking for Hepatitis and other things to be sure not to miss them. (Hep can be found in tick borne disease patients.)
You do know all of the tests he is running that you've listed are "side-shoots" of Lyme?
In other words... folks with Lyme often have those conditions (real or imaginary) and/or are diagnosed with them mistakenly, then not treated properly.
All that said...
I do know a decent ID doc in your area that may be the one you've seen. Good guy and fairly kind and attentive on most days, but not into treating more than he has to... and concerned about having the hammer dropped on him for a Lyme diagnosis.
But he does play outside the IDSA box a little, bless his heart.
I truly wish you the best of luck... and I hope that you have a gem rather than a "nice" piece of coal.
I just hope you understand why we say what we say and that recommending an ID doc here is like sticking a knife in those who suffer daily by their hands.
And if you get bam-boozled, don't feel bad, you won't be the first. If not for the IDSA, many of us would be outside playing today.
quote:Originally posted by one4islands: I have a good friend very ill with LD - within 4 months went from being physically active to bedridden.
Dear one4ilands, that could be you, too.
Few with chronic LD ever see a tick bite. You can contract LD in many ways! You may have contracted Lyme or Bartonellosis by sharing a sip of your good friend's drink one hot summer day... And that may have been on top of the infections you carried since childhood.
A positive WB test means YOU NEED TREATMENT NOW!
Your new ID duck, however kind, is just another quack. Actions speak louder than words.
He made money off you with your willingness to submit multiple tests to the Mayo Clinic and allowing him to bill your insurance for a long initial consult.
That ID duck is just "practicing" on you. There are Lyme-Aware healthcare professionals who would truly help you.
IF he truly cared about you, he would have at least given you a Rx for doxycycline.
In sending you off without abx while his pals at Mayo waste days of your life, he's ensured that your Lyme Bb can continue to damage your body.
And what of the co-infections many members have already brought up?
Did he test for Babesia? Did he tell you he knows that you'll need to clear that infection first, then Bartonella, before there's any hope of getting your Lyme sx into long-term remission?
IF he was actually to be of help, he would have sent a blood sample to Galaxy Lab in N.C. for Bart and IGenX in Calif of MD Labs in NJ to test for co-infections.
IF he were to "do no harm" he would have reviewed with you the nutritional supplements required to help your body combat the LD infection(s). But instead he harmed you by letting the LD have it's way with you for another month...
There is a LLMD in Maryland that takes insurance. You could travel there for treatment if you wish to heal from this serious epidemic.
Bankrupt is better than dead.
Read the Lyme obituaries in General Support.
There are also several extensive threads on how to get treatment when you've little or no $$$.
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Tincup
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Hey Remember..
Just curious. Where did you find documentation for this statement? I've not seen it.
"You may have contracted Lyme or Bartonellosis by sharing a sip of your good friend's drink one hot summer day... "
2-3% of ID doctors recognize and treat Lyme. So either you got lucky, or "time will tell."
Please do keep us posted. We want to be sure you are in good hands!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tricky Tickey
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Member # 26546
posted
one4islands: I'm glad you had a positive experience with this doctor. Excellent. I truly hope you can get some answers, for sure! There's one way to know for sure if he's on target....: when you get better!
Plus, you always know you have the option to go to an LLMD if this doc doesn't help you. And there's the "natural route". You can get well by using natural supplements & diet. Really, I know someone who has.
So you've got lots of options, you are smart, and have researched enough. If your choice is right for you, go for it! If not, go another route.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tincup
Honored Contributor (10K+ posts)
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posted
Just checking arkie..
You said.. "And there's the "natural route". You can get well by using natural supplements & diet."
I will assume you don't mean a diet and supplements will cure Lyme. Right?
Just want to be sure no one gets the wrong idea here.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For anyone considering "the natural route" it would be good to study each of the authors in the thread below. Read each article, each book and compare. That will take a long time, time best spent under the care of a seasoned LL doctor.
But, two things in common with all of the "natural" routes:
(1) most incorporate antibiotics and other selective Rx. And the two that do not, specifically, do have room for those and the authors both suggest antibiotic when needed.
(2) every protocol is extremely complex, requires much study and strict self-care. Treatment is best under the guidance of a LL doctor as there is no way that we can possibly know all that a seasoned LL doctor knows to treat us.
(3) Rife has been helpful to many. It's not simple but nothing about lyme is, still, it's one worth adding to the study list.
NOTE: Many "natural" paths suggest that if we can just get the body stronger that it will heal. It does not work that way with lyme.
Support supplements just won't cut it. Some help, tremendously, yes - so that the liver can work better, etc. . . . however . . .
Specific anti-spirochetal efforts MUST be employed to address lyme. Specific anti-babesia efforts MUST be used to treat babesia, etc.
"Boosting" the immune system can harm lyme patients. A very particular method of BALANCING is best used.
Even if a doctor has their own methods (as most do), if they are not ILADS-educated, intimately knowledgeable about ILADS' conferences, researchers, etc . . . if they have not treated MANY lyme/TBD patients . . . I would not give them a second look.
We must look to those who are truly lyme literate and have help many achieve a good remissions. No one has the perfect answer but look for those with the thirst for knowledge and a good track record.
And, for anyone who really is pretty much on their own, the links below can be a life-line. But be very clear: specific anti-infection measures must be taken. If there is ANY way possible, find an excellent LL doctor.
Topic: How to find an ILADS-educated LL ND (naturopathic doctor), L.Ac. (acupuncturist), etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.
Includes many articles and books on complementary / integrative methods - & RIFE links.
BODY WORK links are also included. -
[ 11-13-2010, 11:39 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tricky Tickey
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posted
The person who got well from chronic Lyme had been passed around by docs who refused to diagnose her with Lyme. She finally went to a Maximized Living doctor of chiropractic. (www.maximizedliving.com) His protocol is much like Dr. Jernigan ("Beating Lyme Disease", Hansa Center for Optimal Health) who stresses that the body can heal itself.
Through intense chiropractic care & following the protocol of Maximized Living, she is 100% well. Learning that the spine is responsible for healing of the entire body (central nervous system), when out of line from years of neglect or injury, it inhibits the body to heal.
This woman herxed on coconut oil. I don't know what all she did, but I do know she went 100% on the diet of no sugar, wheat, etc. Very strict! I plan to get her full story when we have a meeting on the 19th. Some ladies are starting a LD group.
I can tell you this....my symptoms did not alleviate until I started going to this Maximized Living doc. I was so brain-fogged, weary, confused, dragging when I went in to his office (had been on Doxy 5 weeks pulsing Flagyl) that I could barely think. Upon xray, he found my top bone in my neck was pushing against my brain stem, interfering with the rest of the spine.
After 5 treatments, I suddenly began to have mental clarity. I did not stop antibiotics, but I did faithfully go to my appts. I do spine re-hab at home too. My energy increased. I took off 3 weeks from work and boom! I feel 99% well! Only symtpom left is joint pain.
I feel like every person is made up differently. If our immune system is down, we have worse symptoms. First thing my LLPA asked when I saw him was "what has happened in the last year to drop your immune system so?" And I told him.
Everyone is different. Natural may work for one, but not another. I chose both: to use antibiotics to kill keets & clear my body of interference with spine care. It worked for me. I don't urge ANYONE to get off their meds.
I said all this to say, this woman chose to go completely with the Maximized Living protocol and it worked for her. Im convinced that the key to health is a healthy spine.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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steve1906
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posted
from all the reseach I've done, I do think SOME people can get better from (the "natural route").
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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littlebit27
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Member # 24477
posted
I must post to say I completely agree with what Tincup had to say.
I've seen an ID Doc, and Internal Medicine Doctor, and I've seen an allergist who some idiot believed was a LLMD and told everyone about.
I was told it's in my head, I was told I had post lyme syndrome. I was told we needed tests to confirm the diagnosis.
BLAH BLAH BLAH.
The red flags I see specifically are the tests he ordered-number one a REAL Lyme Doc knows NOT to treat based on tests, especially tests from Mayo (I too had a neg. from Mayo).
The fact that he is saying he needs a test to confirm the diagnosis when you already have a positive test. The allergist quack said that to me...the same one that told me I have post lyme syndrome.
At any rate, I'm glad you felt like he was listneing you, and I'm glad you have some hope. We are just afraid you are going to be let down as so many have before you.
Hopefully he at least starts treatment until you can afford an LLMD appt.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
He sounds like a nice guy, but it's clear he doesn't know what he's doing in respect to Lyme Disease, and sadly once you do end up seeing someone who specializes, he won't likely be an ally you can turn to for long-term support.
It is nice to have someone at least make an effort but you know what they say -- the end result is still the end result and that's what you need, to get well from Lyme Disease.
One great thing about the situation is you can use him to get a lot of the circumstantial testing out of the way, and hopefully a good portion of co-infection testing and or "associated" infections, i.e. hpv6, ebv, cmv."
Special testing is needed for the co-infections that are spread directly by ticks sometimes, but testing for Rocky Mountain Spotted Fever is usually pretty accurate, so if you test for that or even Erhliciolsis, it helps reinforce the diagnosis. You don't really need that, but still it helps to know.
Seems to me you already have a positive test result though, so it's a waste of time to not begin treating Lyme Disease immediately.
A positive Western Blot should absolutely never be ignored. A patient should never go without treatment once a Western Blot is positive. It doesn't matter if it's a false positive -- the risk to benefit of beginning treatment is in favor of treatment. Better for there to be no infection and to receive treatment than to assume the opposite. That's the biggest sin.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Okay guys-after listening to everyone's advice and being very confused-tug-of-war I have rescheduled my appt. with the LLMD I had originally had an appt. with and was cancelled by their office. I spoke with someone who recently saw this dr. for the first time and was highly impressed. I will see what the ID dr. finds from my labs, as I may have other things going on along with the Lyme. It will be interesting to see what the Lyme test shows, as most everyone swears it will be negative. I will see the LLMD for the Lyme. Thanks for everyone's input. I will keep you posted of the outcome.
Posts: 412 | From Virginia | Registered: Sep 2010
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Tricky Tickey
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Member # 26546
posted
Good deal, one4islands! Go with your gut instinct here. It sounds very logical to me. I would have made the same choice. You are keeping your options open. Good for you!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
Still awaiting ID dr. to call me back with labs that all were normal with the exception of one which is of concern. Mayo's Lyme WB negative. It didn't even report any bands.
Saw LLMD today and yes, I have Lyme and we are starting treatment. He spent about 1 hr 45 mins with me for a $35 copay and I drove 183 miles roundtrip, but well worth it finally. Am to start Questran (few days to few months, while waiting for RX for Benicar and have been given rxs for Cleocin and Zithromax to take every other day with Benicar. He is for low doses at longer periods (no high dose IV antibiotics). He believes in treatment from pharmaceutical abx as well as natural abx. No dairy and if possible gluten-free. He has ordered Babesia and Bartonella tests though I was warned may not get answers. Ordered the CD57 Panel and some specialized thyroid tests along w/ Celiac HLA. My only concern-no probiotics were ordered. Don't know if it's because of low doses or not, but I was given his email to contact him with any questions. I am looking forward to feeling like my old self at some point.
Posts: 412 | From Virginia | Registered: Sep 2010
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posted
Still awaiting ID dr. to call me back with labs that all were normal with the exception of one which is of concern. Mayo's Lyme WB negative. It didn't even report any bands.
Saw LLMD today and yes, I have Lyme and we are starting treatment. He spent about 1 hr 45 mins with me for a $35 copay and I drove 183 miles roundtrip, but well worth it finally. Am to start Questran (few days to few months, while waiting for RX for Benicar and have been given rxs for Cleocin and Zithromax to take every other day with Benicar. He is for low doses at longer periods (no high dose IV antibiotics). He believes in treatment from pharmaceutical abx as well as natural abx. No dairy and if possible gluten-free. He has ordered Babesia and Bartonella tests though I was warned may not get answers. Ordered the CD57 Panel and some specialized thyroid tests along w/ Celiac HLA. My only concern-no probiotics were ordered. Don't know if it's because of low doses or not, but I was given his email to contact him with any questions. I am looking forward to feeling like my old self at some point.
Posts: 412 | From Virginia | Registered: Sep 2010
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posted
Thanks. I am going to drop the dr. an email and ask if he forgot to recommend them. I didn't see them mentioned on any paperwork, but my mind was moving in a million directions and you always forget that one question.
Posts: 412 | From Virginia | Registered: Sep 2010
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Tricky Tickey
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Member # 26546
posted
You'll also need Diflucan to kill the yeast. I've been taking it twice a week plus probiotics. Didn't get candida til last week....when I ran out of Diflucan for over 1 week!
I'm glad you are getting the answers you need.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
hmm sounds familiar, went to an ID DR. nice as pie took all sorts of test, listen to every word, assured me we would figure out what was going on. then tests came back cdc negative and guess what?? no more Mr. nice Dr. pawned me off to someone else, said it could be fibro. whatever....found a lldr after that.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
Not all drs are smart enough to recommend the probiotics. Use your common sense on this one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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onbam
Unregistered
posted
Unfortunately, there's basically no such thing as a false positive for Lyme unless you have Syph or one of a few other things, and Mayo will not diagnose you. I've never heard of them diagnosing it, and, according to my doc, doctors there get fired if they diagnose it. Any positive test, is essentially like winning the lotto for a lyme patient, and with any lyme symptoms, it's pretty much definitive.
will pm--hope you can educate this doc and get the care you need.
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onbam
Unregistered
posted
oh, thought you were in midwest since you said mayo. trying to think of lyme groups in virginia who might be able to point you in the right direction--natcaplyme comes to mind, not sure what other are
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posted
I rec'd your private message onbam. Thanks for taking the time to help though I have found a LLMD. Read further down from original message everyone I did go to a LLMD dr. yesterday, one week after my ID appt.
Thanks for the support and advice.
Posts: 412 | From Virginia | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I must have missed the note just above this. Very glad to see you got to a LLMD. Good luck. I will leave this post explaining why the ID doctor didn't mention probiotics, then:
About PROBIOTICS, you wrote:
"Thanks. I am going to drop the dr. an email and ask if he forgot to recommend them. I didn't see them mentioned on any paperwork, but my mind was moving in a million directions and you always forget that one question." (end quote) ------
You can't wait for this doctor to tell you to take probiotics. You need them NOW. But hours away from Rx and from supplements.
Chances are he did not "forget to recommend them" - chances are he is not very well educated about the importance of probiotics. Most ID doctors have no clue. Only one in million will stress the importance of doing all you can to prevent a systemic candida infection that results from antibiotic use.
Prevention is far, far, far, easier than trying to get rid of it. Probiotics should begin BEFORE antibiotics, IMO. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Think it was not the ID doc that forgot this, it was lyme doc. But there is SO much ground to cover with lyme patients, and this one was with the doc for a long time. No need to ask the doc about probiotics. Just start taking them, two hours after antibiotics.
It is true, however, that lower doses abx do not require as big a dose of probiotics. At least that was my experience.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I emailed the dr. this morning and he gave me a website w/ some probiotics recommended.
He said he does recommend them. He also sent me an email regarding detoxing w/ Chlorella tablets and Ciltantro tincture.
There is so much to absorb and research.
I put up several postings regarding my abx he chose, Benicar and Questran.
I feel fortunate that he has given me his email so I can ask questions.
Thanks again. I will be asking much more and taking notes. I have a huge file system going.
Posts: 412 | From Virginia | Registered: Sep 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
wow...somebody who has had a good experience with infec docs is indeed rare.
mine was a nightmare. wasted over six months..
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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