posted
Recent history of illness: April 2013: had Bell's palsy on the right side April 27, took steroid for 7 days, symptoms completely went away in 3 weeks, did not feel pain or tiredness anywhere, did not suspect Lyme. First week of July: felt soreness in right ankle when playing tennis, stopped for days but symptom did not go away. Second week of July: felt soreness in both ankles and both knees, but not swollen, mild heat in lower legs. Third week of July: additionally, felt pain in sacroiliac joints and hips, and pain in hip muscles and back muscles.
Went to see my family physician on July 20, suspecting ankylosing spondylitis (AS) or rheumatoid arthritis (RA). Did blood test. Results showed: negative for HLA-B27, negative for Rheumatoid Factor, low for C reaction protein, high for Lyme Ab 2.43 (<0.91negative, >1.09positive), Lyme Ab IgM also high, 1.54 (<0.91 negative, >1.09positive). Further Western blot is requested and has not come out yet.
So AS and RA was excluded (I don't know whether this exclusion is right or not, though) and Lyme disease was diagnosed.
My doctor prescribed me 1 month oral Amoxicillin, 500mg/dose, twice daily, take motrin up to 4 pills/day when pain felt.
My thought is: I don't remember any tick bites recently and nor do I have "bull's-eye" rashes. so this looks like late-staged Lyme Disease, maybe for years. But I have been playing tennis for years and did not feel too much tiredness or any headache or pain before. Does high IgM most likely mean recent infection? Because I heard that IgM will go down and IgG will go up as the immune response persists.
So I do have a few questions: what else test needs to be done to make sure the Lyme disease diagnosis? The pathogen culture from the blood is difficult, right? Is oral Amoxicillin ( 500mg/dose, twice daily) enough for late-staged Lyme disease? Do I need to see a Lyme specialist doctor instead?
With the Lyme arthritis and pain in the butt continuing to irritate me, I am so angry and frustrated with myself for that I might have ignored any symptoms before which should have had Lyme tested. My annual physical exam did not have Lyme test so I don't know if I already had Lyme even last year or years ago.
Any of your opinions are appreciated.
Posts: 20 | From New Jersey | Registered: Jul 2013
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glm1111
Frequent Contributor (5K+ posts)
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posted
Parasites and worms are now recognized as the number one co-infection of Lyme by ILADS. It has been the missing link for many that are chronically ill. Type in the search bar at the top PARASITE WARRIORS SUPPORT THREAD for more insight on this.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thanks, Gael. I took a quick look and parasites/worms would be considered if Amoxicillin fails to cure my Lyme disease, right?
Posts: 20 | From New Jersey | Registered: Jul 2013
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
The bells palsy was probably your first lyme symptom-and a very common one. Amazing your Dr didn't suspect lyme.
Don't worry about the IgA or IgM-you may have just got infected in April-and many of us don't get the rash.
Go see a lyme literate Dr-soon!
Posts: 1276 | From maryland | Registered: Jan 2009
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glm1111
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posted
Your welcome. Amoxicillin will most probably not cure late stage Lyme disease even at higher doses and taken for a longer time.
Some LLMDs are finding that antiparasitics such as Ivermectin, alinia, albenza etc are what is needed and for as much as a year.
There is a Dr trained by Dr. K. outside of Philly that treats Lyme and parasites that TammyN has had good success with. Also google parasite symptoms.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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t9im
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Member # 25489
posted
Hi ds:
I will try to help but you should schedule an apt with a LLMD as soon as possible. I agree with beths.
"what else test needs to be done to make sure the Lyme disease diagnosis?"
A Western Blot by Igenex will help. Igenex covers two strains of the borrelia bacteria and more lyme specific antigen bands than the NIH test kit used by the standard labs.
"The pathogen culture from the blood is difficult, right?"
Correct and now that you are on medication it is more difficult. - Advanced Lab test is 2 months minimum off medications.
Is oral Amoxicillin ( 500mg/dose, twice daily) enough for late-staged Lyme disease? No, you are on the standard dose issued in the summer for early infection.
Doxycycline is the preferred anti bacterial as it also helps with some of the co infections but a side effect is severe burning in the sun.
Do I need to see a Lyme specialist doctor instead?
Yes, but you must become aware there are two standards of care. Here in this environment we only consider LLMD's that follow the ILAD's standard true specialists.
We have all learned the hard way. There is a controversy in the medical community on diagnosing and treating tick born diseases.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
The neurologist I saw for my bell's palsy did nothing at all. He just kept telling me that Bell's palsy happened all the time and would cure by itself even without treatment. I was so assured and did not pay attention to any possible infection. But there was no rashes at that time, though.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
Hi Gael, how do I find out the dr that TammyN was seeing? Or can I ask you in private msg?
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
Thank you so so much, Tim. You make me much more clear about the diagnosis.
One more question: you mentioned "there are two standards of care", do you have a link or post that I can further read about? Confused and I don't want to make a mistake, especially at this time.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
I'm not sure where you are in New Jersey, but I'm near Princeton and travel about two hours into central PA to see a lyme literate integrated doctor who is great. People come from all over the country to see him and he has a solid history. I will private message you.
I did a lot of research and attended support groups in both PA and NJ. He was the best who takes insurance. As an integrative doc, he's treating with me with the type of long-term remedies that will sustain me after abx. I am among the group who believe lyme is rarely cured. We can only put it in remission. These tiny little spirochetes hide out in places far from where the ABX can reach, they turn into cysts by forming bio shields that can't be fully destroyed.
The good news is, our immune system is the best medicine against lyme & co. An entire lifelytle/diet change is needed to keep the lyme in check. I've only just begun my journey, but I do not eat sugar, flour, or dairy; I'm on three abx twice a day; do everything to detox. It's been 4 and a half months.
My ortho diagnosed my lyme in late stage after a positive western blot and due to a swollen knee the size of a grapefruit. We are living in an endemic lyme area here in NJ/Delaware Valley. Google the lyme map for the U.S. In fact, my ortho diagnosed a colleague of his who is on the board of health for a nearby state the same week he did me.
I would get on Doxy as soon as I could.
First things I did were: Read "Cure Unknown: Inside the Lyme Epidemic" Got to know Dr. Joseph Burrascano's protocol thoroughly. Watched the documentary "Under Our Skin" Read "The Lyme Diet" Read "The Lyme Disease Solution"
Posts: 83 | From Sarasota, Fla | Registered: Apr 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Bells palsy, followed by arthritis that moves around is certainly suggestive of lyme, regardless of test results.
What you need to understand is that testing is not totally reliable. So, if your western blot comes back negative or just not enough bands for CDC positive, you can still have it. So, don't let anyone tell you otherwise when the western blot result comes back.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you VERY MUCH, Susan. I am in Edison, half an hour from Princeton.
and thanks for your reminder, poppy.
One more thing I forgot to add: I am starting to have a mild headache/dizziness in the back of my head today, i.e. the second day I am taking Amoxicillin. Don't know if this is due to Herx effect, or the progress of the disease, or simply that I did not sleep well due to the pain in the butt.
Posts: 20 | From New Jersey | Registered: Jul 2013
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Judie
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Member # 38323
posted
"One more question: you mentioned "there are two standards of care", do you have a link or post that I can further read about?"
Watch "Under Our Skin." It's a documentary that explains the controversy. It use to be on netflix, it might be on hulu.
Just watch your symptoms with the amoxicillin. That does sound like a herx. I was horribly allergic to amoxicillin (neck swelled up), so try not to mistake a herx for an allergy.
You probably need to be on a detox protocol for your body to handle the die-off from the Lyme.
Make sure to take probiotic AWAY from the amoxicillin too (2 hours away either direction).
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- From the "WHY an ILADS LL doctor?" thread the excellent article that Judie suggests:
by Lorraine Johnson, JD (revised 2005) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Judie also makes an excellent point "You probably need to be on a detox protocol for your body to handle the die-off from the Lyme." (end quote)
posted
You said there were no rashes at the time of the Bell's palsy. Only 20-30% get a rash. And many people never see the tick or ticks that bit them.
Just to let you know, good antibiotics will be able to treat the Lyme arthritis. We're all different in what works for us. For me, it was oral clindamycin 150mg 2x/day that kept down the joint swelling. Now I put bulk turmeric powder into capsules to keep the joint arthritis symptoms down.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin is right .. most here never had a rash to warn them!!
Regarding the IgM....
-
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both." ___ Dr C of MO
I'm very sorry that the neuro never considered Lyme. They rarely do and the patients are the ones to suffer.
-
This explains why you have to find an LLMD and why they are being persecuted:
posted
Thank you guys. The information about treatment of chronic lyme disease is so overwhelming that I have to digest for quick a while, but I'll see an LLMD asap.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
Judie, is probiotic required? to alleviate the side effect of antibiotic? I did have diarrhea tonight, maybe due to the side effect, but looked not so severe, though.
Maybe when the Western blot result comes out in a few days, I'll then talk to my family doctor about probiotic, and even "cyst buster" that I learned today.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
The probiotic is to protect you from Candida/yeast. It can happen very easily and once you let it happen, it will be VERY HARD to get rid of. Trust me on that one!
Always look at the "CFU" count on the probiotics in order to compare strength.
posted
Thanks, Lymetoo. I'll buy some in CVS tomorrow. 100b CFU in the morning and 100b CFU in the evening, 2 hours away from antibiotics.
Just thought of another question, I know Lyme Disease is not contagious, but my wife has been trying to get pregnant, do I need to be concerned about my lyme transmitted to the fetus/baby? I'll have my wife test her blood tomorrow to make sure first she is Lyme-free.
Posts: 20 | From New Jersey | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You won't find any good probiotics in CVS. You need to go to a health food store (meaning a store that sells organic food, supplements, etc.--NOT GNC) and buy a refrigerated probiotic.
For example, Jarro-Dophilus. Or any of the ones recommended above, sold on-line, etc.
You will find that these probiotics are expensive, but they work. Any acidophilus sitting on the shelf at CVS is useless!
See what Burrascano says about it here:
"BASIC DAILY REGIMEN (in order of importance) 1. PROBIOTICS (required when on antibiotics)
Kefir: This is a yogurt-like drink that is said to more permanently replenish beneficial flora. It is only necessary to drink 2 to 4 ounces a day.
Acidophilus: the best kinds are frozen or refrigerated to ensure potency. Usual dose is two with each meal.
Plan to mix together several different brands to broaden the spectrum. Acidophilus can be gotten from most vitamin stores but some generic brands are of unknown freshness and potency. An alternative that does not need refrigeration and can be taken only once a day is a high potency, patented product called �Pro Bio� from Pharmanex. The ultimate mix of pre- and probiotics with soil based organisms is a product called �Prescript- Assist Pro� from Researched Nutritionals. This too does not need refrigeration.
In addition, have 4 ounces of sugar-free yogurt on occasion." (page 28)
Take the probiotics 2 hours AFTER the antibiotics. Antibiotics kill gut flora, both good and bad. The probiotics will restore it. However, antibiotics kill probiotics along with everything else. Therefore, you must wait for 2 hours after taking them before taking probiotics. You don't want your probiotics killed and your money wasted and your gut not benefit.
Regarding transmitting lyme sexually, most lyme doctors believe this is possibe but rare. There are cases of lyme being transmitted to the fetus by the mother, so this is a fact.
Many engage in protected sex to prevent the possibility of infecting their partner. My doctor says that male to female transmission is more likely because of the greater exchange of bodily fluids from male to female.
So, you may want to put off your pregnancy for a while. Discuss it with your lyme doctor. It may be that once you are on good lyme treatment, you will be told not to worry about this.
I hope you know that the lyme tests are NOT reliable. Read it in the Burrascano Guidelines, page 7. The very first sentence on the page. So, you really can't trust a negative test. If your wife has no lyme symptoms, that is the best indication that she is not infected or her body is able to handle any lyme germs that have come her way.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Judie, is probiotic required? "
Yes, you want something with "saccharomyces boulardii" in it (or buy it separately and take with the probiotic). This will help cut down on the diarrhea.
The antibiotics are killing the good bacteria in your gut along with taking care of the lyme, so you need to replenish it or you won't be able to digest food properly.
The third paragraph in this link talks about probiotics and antibiotics:
Avoid anything with MOS or FOS (this can feed bad bacteria).
I was dealing with the damage done by antibiotics 2 YEARS after taking them without probiotics. Yes, it's VERY important to supplement with this.
Posts: 2839 | From California | Registered: Jul 2012
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In 7th grade he was a gifted basketball player and he had a severe case of bilateral Osgood-Schlatters. He spent one full year resting.. no jumping or running, no PE. He got better. He played 4 years on his high school varsity team and was the team MVP every year.
He had lower back pain sophomore year that went away with steroids and some rest.
Senior year, at the end of the year, ready to go to college and play ball, he came down with a severe reactive arthritis. He was 19 he developed the hallmarks of AS including costochondritis and enthesitis in multiple joints. Both ankles, both knees, both hip flexors, both shoulder enthesitis, and the worst part (and most scary given my family history of undifferentiated spondyloarthropy) costochondritis. The costo was the most painful and the most disabling part.
The immediate trigger was a very bad gastroenteritis with diarrhea.
3 years later and he has no symptoms. He's back playing intramural basketball and soccer at college and he's been well for about 10 months. Maybe it's a remission, but we'll take it.
The key is to find the right doctor... one who is open to and experienced with a wider array of treatments than the mainstream rheumatologists.
I come from a family with lots of arthritis. I'm 55 and have 4 siblings with serious arthritis, two have Crohn's disease as well, and two have had the diagnosis of AS. One has a completely fused ribcage and three have been sick since their teens.
I knew from previous research that there were many doctors out there that believe in antibiotic protocols for arthritis. I found roadback.org -- a forum for patients using those protocols-- and I wrote to them for a doctor.
We chose one, a rheumatologist in Northern Virginia, just outside DC, who is not only an AP doctor, but also a well-known Lyme doctor. She tested my son for all kinds of infections, and it turned out that one of his problems was untreated Lyme Disease. She treated him with IV and oral antibiotics, anti-parasitics, anti-fungals, and anti-virals over a period of two years. (Four months of IV for the Lyme.)
Remember, a negative test result does not mean you don't have Lyme. In Virginia they just passed a state law forcing doctors to explain to patients that a negative test does not prove that you don't have Lyme.
He now has no symptoms of arthritis... he will be 22 in June. He's back at college fulltime and playing intramural basketball and soccer. I urge you to find one of these doctors and ask on roadback.org
If anyone wants more information, feel free to PM me.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Also, saccharomyces boulardii and probiotics should be refrigerated.
My doc has me take 2 pills of both with food once a day.
As for sexual transmission of lyme, that's another controversial topic. My doc says he doesn't advise special precautions.
My doc also says that lyme can be passed from a mother to her baby, but it's unclear if it's passed in the womb, via breast milk, or by both.
I've read some people say they got it from their partner though and the herb expert, Dr. Buhner, advises to take precautions.
There's also a lobby that wants lyme to be ruled an STD so it will get taken more seriously and get funding.
I've also read a study that Lyme has been found in semen.
Those are the points I've heard on the topic.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Thank you, Judie. I just ordered saccharomyces boulardii and probiotics from your amazon links.
I also went to Health Store to buy MegafloraPlus for these few days before amazon delivers my order. Thanks to TF. I would have bought it from a CVS shelf.
A little hint to others: The cashier in the health store was nice to tell me it came refrigerated and was better than another product I held on hand which came at room temperature in truck but kept in the fridge of the store.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
Well, to correct it, the website I ordered the probiotics was customprobiotics.com. Thanks, Judie.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
Thank you, marypart. Your son's story is somewhat inspiring to me despite the unfortunate disease. The more I learned yesterday, the more frustrated I was. The story just gives me hope.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
Help needed again! I went to see my family doctor today and the western blot result comes out as negative for lyme disease...
high for Lyme Ab 2.43 (<0.91negative, >1.09positive), Lyme Ab IgM high, 1.54 (<0.91 negative, >1.09positive)
Supplemental western blot: negative for all IgG bands 18, 23, 28, 30, 39, 41, 45, 58, 66, 93. Negative for IgM band 23 and IgM band 39. But only one Positive band for IgM band 41.
In the report it says "Lym IgG Interpretation: Negative, Lym IgM Interpretation: Negative"
Based on this, my family physician declined to diagnose it as Lyme Disease, and is re-suspecting ankylosing spondylitis (AS). Of course I don't get the new prescription of probenecid. She even asked me to stop taking Amoxicillin. I may go to see a rheumatologist for a second opinion about AS.
But what should I do now? Continue to take the remaining Amoxicillin?
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
Come on! That's the most unreliable western blot and does not test ALL the bands. IGENIX lab testing is the GLOD STANDARD, get this through a LLMD. Of course it's negative, you can also be infected with lyme but have negative tests because the immune system cannot see it and mount a serological response that shows up as positive on the labs. in these case you need to do an antibiotic challenge like with 400 mg doxy plus flagyl or tindamax, etc. Get thee to a good LLMD.
look up Raindrop therapy on this site, it's helping me, had bad arthritis after a big flare up last June, now I do RDT nightly on affected areas, no more pain, if if pull back for afew days and feel pain again then I do it again heavily on all affected parts. I use only young living essential oils.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
positive for band 41 that's the tail of the spirochete, this test does not have band 31 which is MOST important, so are bands 83-93.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
Thanks dal123, the problem is that the earliest appointment I can get for an LLMD is 2 months later. My family physician do not want to give me any more antibiotics during these two months...so I just let the symptoms develop till 2 months later?
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
If IgM 41 positive means "tail of the spirochete" exists in my serum, why is IgG 41 negative? This confuses me.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
per dal123's msg, i do notice the missing test of band 31, 83, and 93. The lab test is from Brlab. Is IGENEX the standard lab to do the lyme test? I don't know if my family doctor has any restricting contract with Brlab. If not, maybe I can ask her to send my blood to IGENEX, before I see an LLMD weeks later. Anyone knows how to do that with IGENEX? I can even pay out of my pocket, if it doesn't accept my insurance.
Posts: 20 | From New Jersey | Registered: Jul 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"If IgM 41 positive means "tail of the spirochete" exists in my serum, why is IgG 41 negative? "
IgM for Lyme is when your body recently spotted this "part" and has made the antibodies for it.
IgG is just another form of antibodies.
You also might need to do a challenge test (take antibiotics for a month, then test, the antibiotics encourage the immune system to make more antibodies).
Negative tests have turned positive by doing this (by CDC standards). The CDC standards are archaic and need to be updated too.
Posts: 2839 | From California | Registered: Jul 2012
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
You may need to be off the abx for a couple weeks before doing the IGeneX test.
I'd encourage you to call IGeneX and ask them how long to be off Amox. before their Western Blot tests (test #188 & 189) can be considered accurate...
I'd also encourage you to go ahead and schedule with the LLMD, and ask to be put on the cancellation list in case an earlier appointment becomes available.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
There are multiple infectious states that can cause a reactive arthritis. You need an antibiotic protocol rheumatologist. You could ask at roadback.org
My son's doctor treated him with antivirals, antifungals, antibiotics and antiparasitics.
His doctor is in Virginia and well worth the travel.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
Thank you all. My recent development of symptoms including hip pain, back pain and heel pain all point to Ankylosing Spondylitis. So I am making appointments with both rheumatologist and LLMDs. Hopefully I won't get misdiagnosed.
Posts: 20 | From New Jersey | Registered: Jul 2013
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posted
You might want to check out kickas.org for information about Ankylosing Spondylitis. Dragonslayer has good information there about healing the gut with diet and antibiotics.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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