First off, the LLMD I went to is a very good LLMD. And he does use the Dr. B guidelines, as others who have gone to him can attest to (based on what they were prescribed/etc.)
Anyway, I wasn't expecting the results of my trip to be what they were. He gave me a full physical examination, looked over all my tests (every IGeneX test basically) and looked at my symptoms.
His determination, was that he strongly believes that, instead of Lyme, that I have Post-Vaccine Auto-immune. He said that based on the timing, based on my test results (CBC and such) and the
way my symptoms are behaving (improving without treatment) that it leans more toward the post-vaccine auto-immune than it does Lyme.
That being said he did however give me a prescription for Doxy, 1 month, 100mg to be taken twice daily. And also gave the name of a herbal called A-L Complex.
Must say, I went in fully expecting to be walking away with several prescriptions for high dose ABX (he's treated other patients this way as I mentioned, but didn't feel it necessary in my case).
So I guess there's some good news? I dunno. He said I could pay another $600 for a test called "advanced lab culture" if I so choose to, but to be honest I really can't afford that right now since I just paid a great deal for the initial visit.
Posted by poppy (Member # 5355) on :
What vaccine was involved?
Posted by Mystery (Member # 43798) on :
Rabies vaccine series and Tetanus shot (is considered a vaccine). I was in the middle of the rabies vaccine series (multiple doses, given on days 0, 3, 7, 14) when I had the tetanus shot.
First dose of the Rabies vaccine was March 28th, the Tetanus shot was on the 11th of April. A week after the Tetanus shot I started to have muscle and joint pain.
Posted by Lymetoo (Member # 743) on :
Sounds like a good diagnosis. Why the rabies vaccine?
Posted by Mystery (Member # 43798) on :
We had a bat in our house a few days before I started the vaccine series. Even though it didn't bite anyone I just wanted to have the series done as a precaution.
Posted by LindenMom (Member # 44214) on :
What doctor (PM me)? Have you tested positive for Lyme?
Posted by Mystery (Member # 43798) on :
No positive tests. The Westernblots provided confusion since the first one (Labcorp) showed IgM 23 then the next one (IGeneX) showed IgM 23 as negative. Then other bands were negative on Labcorp but and positive or IND on IGeneX.
Posted by Lymetoo (Member # 743) on :
UGH on the vaccines. So sorry to hear.
Posted by steve1906 (Member # 16206) on :
|||| IND = Band intensity below calibration standard ||||
-------------
Lyme Multiplex PCR, Serum
Genomic - Negative Plasmid - Negative
-------------
Lyme Multiplex PCR, Whole Blood
Genomic - Negative Plasmid - Negative
-------------
B. Microti IFA, G/M
IgA: less than 20 - Negative IgG: less than 40 - Negative
-------------
B. Microti/Duncani PCR
B. Microti: Negative B. Duncani: Negative
-------------
Babesia FISH - Negative
-------------
HME Panel, monocytic
E. chaffeensis IgM: less than 20 - Negative E. chaffeensis IgG: less than 40 - Negative
-------------
PCR, HME, Whole Blood: Negative
-------------
HGA Panel, granulocytic
A. phagocytophilum IgM: less than 20 - Negative A. phagocytophilum IgG: 80 (may not indicate active infection, in patients with previously high titers such titers may indicate resolving infection)
-------------
PCR, HGE, Whole Blood: Negative
-------------
B. Henselae IFA, G/M
IgM: less than 20 - Negative IgG: less than 40 - Negative
Results > 40 to < 160 may not indicate active infection, in patients with previously high titers such titers may indicate resolving infection.
-------------
Rickettsia PCR Panel
R Rickettsii: Negative R Felis/Typhi: Negative
Steve
Posted by Mystery (Member # 43798) on :
Thanks for re-posting, Steve
Posted by steve1906 (Member # 16206) on :
Where did all those bands come from, if you don't have Lyme?
Others, please respond regarding the test results---ABOVE
Steve
Posted by Robin123 (Member # 9197) on :
There's positive bands on the IgM test!
Posted by Lymetoo (Member # 743) on :
UH OH
Posted by Mystery (Member # 43798) on :
Isn't it supposed to be that you can't go purely based off test results and diagnosis is clinical?
The LLMD I went to is Dr. S in MD, for those of you who know who that is knows how good of an LLMD he is.
Posted by surprise (Member # 34987) on :
Maybe that's why you got the Doxycycline prescription, to see how you fare on it.
Plenty, plenty of stories re: someone carrying Borrelia, going about their life unaware,
and bam! Vaccinations set off illness.
Hope you get well/ better, that's the main thing. Best wishes.
Posted by Judie (Member # 38323) on :
After a month of doxycycline you might want to retest Lyme (through labcorp or Igenex for free if you have medicare).
My test turned positive after a month of doxy once. It's called a challenge test a lot of doctors do them.
I got a positive test through Labcorp so it is possible (not perfect but possible).
Posted by steve1906 (Member # 16206) on :
quote:Isn't it supposed to be that you can't go purely based off test results and diagnosis is clinical?
If someone test pos. through (blood work), then they have Lyme disease.
If someone test neg. through (blood work), then it can be clinically diagnosed.
That’s the way I see it.
Steve
Posted by Catgirl (Member # 31149) on :
You originally had band 23 Igm present-abnormal. You have lyme. Band 23 doesn't pop up for anything else but lyme, rabies shots nor not. Even though 23 didn't show this time, it did before. So 23 past test and your current numbers indicate lyme.
My test looked similar to yours until I was on abx, then the lyme became obvious. Your numbers will most likely change after you've been on doxy.
Posted by Lymetoo (Member # 743) on :
Are you going to see him again following this treatment with doxy?
Posted by lpkayak (Member # 5230) on :
I think he gave you the doxy to see if you would herx. If you do that is dx of lyme. Did he mention that
Ditto about retest after month of doxy
Ditto band 23
Posted by Mystery (Member # 43798) on :
Didn't mention about the herx. I do plan to keep seeing him.
I had a question nobody ever actually answered for me, what is it about undertreatment with low dose abx that causes chronic lyme? Is it that the low dose abx causes the lyme to mutate?
Or is it that the low dose abx doesn't fully eradicate it, and following it people stop treatment and it eventually develops into chronic state due to 1+ years of not being treated for the remaining lyme (1+ years of the remaining lyme replicating)?
Dr. B's guidelines don't explain specifically what about under treatment that causes lyme to return in chronic state.
My concern is the 1 month of doxy causing it, since my next appointment is in 2 months, so i'd be 1 month post-low dose doxy without any treatment of any kind.
Last time I asked a question similar to this I got yelled at by a poster because they thought it was a dumb question I guess (I asked if Garlic clove consumption can push Lyme into chronic state).
Posted by surprise (Member # 34987) on :
I will give my .02 cents.
You already have 'chronic Lyme' as I'm guessing you've been carrying it over a year, and your immune system was handling it on it's own,
thereby not giving you classic Lyme symptoms. Then you went and had a series of very serious vaccinations,
and your immune system went down- too much to handle, and you got the symptoms you experienced after the vaccines.
Whether the Doxy can help you or not no- one can answer- only you and your body by taking it.
Just my opinion- lots of people carry Lyme unknowingly, and then a stressful event, like a major surgery, a pregnancy, etc. can trigger/ or cause relapse.
Posted by Mystery (Member # 43798) on :
Shouldn't I be more ill though? Not that i'm complaining about the lack of symptoms. But i'm incredibly mild on symptoms. The muscle and joint pain is -almost- non-existent anymore. And from everything I've read about Chronic Lyme, those who are chronic are much more ill with much stronger pronounced symptoms.
the only other symptom I have is the right lower eyelid twitch and that's not constant either, it's random throughout the day.
I dunno how immune system strength is tested, I do know that all my CBCs have been normal. Haven't had one of those CD57 tests ever.
As for mental capabilities, if anything I've noticed IMPROVED memory of late (compared to how it's been since I was a small child, i've never had the best memory out there, nor anyone else in my family), and I don't have any brain fog or difficulty functioning / thinking.
Posted by seibertneurolyme (Member # 6416) on :
I am somewhat concerned about the test results for HGA (human granulocytic anaplasma) and rickettsia. Those tests indicate exposure - but maybe you were lucky and your immune system beat those infections.
Doxy would be the treatment for either of those infections.
In your situation, all you can do is monitor symptoms and be hyper alert. If you start running fevers or have any significant change in symptoms between now and your next scheduled appointment - please call or fax your doc. Do not wait for the next appointment.
I would ask for a repaeat lyme test and also to repeat the HGA and rickettsia panels as well. Call or fax and get the orders for the tests so you can have the results back at your next appointment.
Good luck.
Bea Seibert
Posted by Ellen101 (Member # 35432) on :
Mystery our stories have a few similarities. I also appeared to become ill after vaccine exposure, had band 23 show up and later disappear..But prior to the vaccines I had suffered a tick bite. I went to my physician as it appeared swollen and red. She assured it was just a localized reaction.
A few weeks later I was scheduled for my physical. In that time I had begun suffering some strange muscle pain in my hips. I mentioned it at my appt and asked if it could be related to the tick bite and I was told probably not...I was advised to update my tetanus shot as well as the flu shot. Big mistake. Shortly after that appt I crashed. Severe, debilitating bilateral hip bursitis began.
I went to see my doctor again and at my insistence a lyme test was done. It came back equivocal. I was given a few weeks of doxy. Within 48 hrs of starting it all my pain vanished. I felt amazing. 72 hrs later I was in severe pain, worse than before and could hardly walk.
I found my way to a LLNP a month later who ran more tests. That was when band 23 showed up as well as other infections like RMSF. She started me on several different antibiotics. I saw her for about a year and had some good periods, but began to have symptoms worsen. I had done many different antibiotics including IM bicillin. I knew it was time to move on.
I am now seeing a different LLNP . While she is knowledgeable about lyme she also looks beyond it for other causes, not just focusing on the lyme itself.
Her belief is while lyme can set things in motion it is important to put out the fire it may have caused by addressing inflammation, hormone disorders, food sensitivities, thyroid issues etc. To continually go after just the lyme would cause more problems in the end. On my most recent testing band 23 was no longer present.
If your doc wants to start with just doxy then I think that is great in light of your mild symptoms. Why attack your system with dangerous antibiotics if you don't need to. At the same time your immune system needs to be kept in check to prevent the lyme from becoming active, if present.
................................................
Breaking up a paragraph for easier reading for many here -
[ 08-15-2014, 02:05 PM: Message edited by: Robin123 ]
Posted by poppy (Member # 5355) on :
No one knows what your response to this treatment will be, whether you will then have no further symptoms, will be OK for a while and then crash, or what.
I think maybe you don't have a good understanding of the immune system, but then why should you. The garlic question was an example of this.
To answer your question about inadequate antibiotic treatment: in lyme it is inadequate treatment that results in chronic cases, not just giving it some treatment that makes the bacteria change to something less treatable. See the difference? It is not resistance, but entrenched disease.
What Ellen is talking about, having to handle other conditions too, is most likely needed in chronic cases that have gone on for some time and have caused malfunctioning in various systems. Then you need antibiotics AND other things. Like you might now be hypothyroid, for instance. Just an example.
.................................................
Breaking up a paragraph...
[ 08-15-2014, 02:06 PM: Message edited by: Robin123 ]
Posted by GretaM (Member # 40917) on :
I believe the low dose doxy is for the rikettsia and anaplasma.
Any LL worth their salt will see the rikettsia, the anaplasma and the lyme specific bands on your WB and see that you have been bitten by a dirty tick.
BUT, it depends on the patient and how much the patient knows about TBD, how sick the patient is and also abx compliance.
I bet my shoes this doc is treating Anaplasma and rikettsia currently.
And may suggest an Igenex retest for lyme after your doxy is finished.
Glad those other tbds are getting treated. Posted by poppy (Member # 5355) on :
A retest for lyme after antibiotics may come up false negative because antibody response is abrogated. At least that is what I have heard.
Posted by Lymetoo (Member # 743) on :
If you treat for one month, go OFF abx for 10-14 days, the test will be MORE LIKELY to come back positive. More bands will probably show up.
Posted by Lymetoo (Member # 743) on :
--and that is likely his plan--
Posted by Mystery (Member # 43798) on :
On what Greta said about Doxy,
I had a question. Dr. B guidelines say that the Doxy treatment for Anaplasma starts at 200mg bid (increased if necessary) daily.
My prescription is for 100mg 2x a day. I thought that with the 200mg bid listed in the guidelines that means 200mg all at once, not split dosage.
Is this correct? Or does it not matter if it's split dose as long as it's 200mg total daily? A little clarification, if anyone can, would be appreciated.
If it requires 200mg all at once, is it maybe advisable I take both of my doses at the same time, instead of splitting them?
It does seem like the Dr. is following the guidelines in my case, quote from the guidelines:
"Consider Doxycycline first in early Lyme due to concern for Ehrlichia co-infections"
"EHRLICHIA (AND ANAPLASMA)
TREATMENT: Standard treatment consists of Doxycycline, 200 mg daily for two to four weeks. Higher doses, parenteral therapy, and longer treatment durations may be needed based on the duration and severity of illness, and whether immune defects or extreme age is present"
Based on my symptoms, and their lack of severity, it suggests, if Lyme, regardless of how long since my tick bite, that Lyme may still be in early stage of development.
Immune system doesn't seem impaired, and symptoms are very mild and VERY limited in number (only 2 symptoms).
Dr. B guidelines on indicator of early Lyme:
"EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment"
The above fits what i'm experiencing right now, milder symptoms that have been present for less than a year, and i've not taken steroids recently, only steroid i've ever had was a nasal spray for allergies and stopped that months before the rabies vaccine and even then I only used it every now and then, not daily.
Posted by Lymetoo (Member # 743) on :
Yes, it would mean 200mg twice a day. One thing to keep in mind is that he probably figured that you would herx too hard on that much. Hence the lower dosage.
I think you will be OK.
Posted by Ellen101 (Member # 35432) on :
quote:Originally posted by Lymetoo: If you treat for one month, go OFF abx for 10-14 days, the test will be MORE LIKELY to come back positive. More bands will probably show up.
In my case the one band I had, 23 was no longer positive and no other bands ever showed up.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by Lymetoo: If you treat for one month, go OFF abx for 10-14 days, the test will be MORE LIKELY to come back positive. More bands will probably show up.
Really good point Lymetoo. That is one of the reasons why he only gave you a month of doxy. By the time you go back there is a better chance of lyme showing up on your next blood test. Docs have to trick lyme because it hides.
Posted by Catgirl (Member # 31149) on :
So it still hid in Ellen. This is the thing about lyme, it's different for everyone. She must have had symptoms though or her doc wouldn't have treated her.
You will know more once you are on and off the doxy. Hang in there. Everyone is different. Keeping a journal is helpful.
Posted by surprise (Member # 34987) on :
And Ellen, I don't think you are referring to an Igenex Western Blot- An Igenex only showing any activity on band 23,
and then later showing nothing? That sounds like a classic Labcorp Western Blot.
Posted by Mystery (Member # 43798) on :
Surprise, what about 23 showing on Labcorp but not showing up on IGeneX?
Lymetoo, it was saying 200mg -total- per day, for a month, in the guidelines. The 200mg twice a day you mentioned would be 400mg daily, not the 200mg that the guidelines stated. And you are right, I probably would herx bad on 400mg per day as that seems like a pretty high dose for just starting treatment.
That was why I was asking if, when the guidelines state 200mg per day, if it meant 100mg in the morning and 100mg in the evening (200mg per day, but split into two doses) or if it meant taking two 100mg capsules at the same time (to equal 200mg).
Posted by Ellen101 (Member # 35432) on :
quote:Originally posted by surprise: And Ellen, I don't think you are referring to an Igenex Western Blot- An Igenex only showing any activity on band 23,
and then later showing nothing? That sounds like a classic Labcorp Western Blot.
Yes, it was not Igenex. I was not spending the money for that test and honestly my LLNP did not feel it was necessary to do so.
Posted by surprise (Member # 34987) on :
Labcorp and Quest Western Blots are inferior to an Igenex Western Blot.
I said band 23 only showing up on a labcorp Western Blot is 'classic' because I have read a lot of stories about a Lyme positive person first doing a labcorp WB,
and if anything happens to show up, it is band 23. I started looking into this when the very first Lyme test to be run in my family was on my daughter, a labcorp WB, and only band 23 showed up.
It does not mean band 23 then should show up on Igenex. It is a small sample of blood at a given time. In fact, band 23 did not mark on my daughters subsequent Igenex WB.
Band 23 is ONLY specific to Lyme bacteria. Lyme bacteria in your blood is the ONLY reason it shows up. Same for the other Lyme only specific bands on the WB.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Mystery:
I had a question. Dr. B guidelines say that the Doxy treatment for Anaplasma starts at 200mg bid (increased if necessary) daily.
My prescription is for 100mg 2x a day. I thought that with the 200mg bid listed in the guidelines that means 200mg all at once, not split dosage.
- This is what I was going by. 200mg bid means 200 twice a day. (doesn't it??)
Posted by steve1906 (Member # 16206) on :
- I'm prety sure "(bid") stands for twice a day.
Steve
Posted by poppy (Member # 5355) on :
Mr. Google provides the answer again:
How Often to Take Your Medication
ad lib - freely, as needed bid - twice a day prn - as needed q - every q3h - every 3 hours q4h - every 4 hours qd - every day qid - four times a day qod - every other day tid - three times a day
Posted by steve1906 (Member # 16206) on :
- Abbreviation----Meaning
ac -- before meals bid -- twice a day cap -- capsule gt -- drop hs -- at bedtime od -- right eye os -- left eye po -- by mouth pc -- after meals pil -- pill prn -- as needed q2h -- every 2 hours qd -- every day qh -- every hour qid -- 4 times a day tab -- tablet tid -- 3 times a day
I put bid in there because I was confused about what it stood for, I've seen it other places in the guidelines just not the part I quoted that spoke of Anaplasma treatment. If you look at my post above the line I quoted doesn't use bid, it just states daily.
I just thought that bid meant that was the total amount, ie, I thought when you said 200mg bid, you were saying 200mg total.
Separate question about Doxy. I've heard that consumption of dairy can effect the strength of it. I'm guessing I can only eat dairy more than 2 hours after taking it?
Posted by GretaM (Member # 40917) on :
Mystery-firsst off just want to say it is SO SO SO awesome that you are reading dr b's guideliines for referencing. Those guidelines are so helpful and informative
And you are right-avoid dairy, calcium and magnesium and iron supplements within 2-3 hours of taking doxy.
this includes antacids etc that contain minerals.
Also, be careful of the sun. Sometimes the doxy and UV react and create chemical-like burns on the skin.
This happened to me when driving. The left hand and the tip of my nose. Haha. Looked like a clown for a month or two.
Also to remain upright after taking doxy because it is one of the abx that is known to irritate the esophagus and stomach lining if not taken with a big meal.
Fun facts about doxy I learned from my doc: Doxy gets rmsf, anaplasma, erlichia, microfilarial worms, and protazoa.
It is my all time favorite abx, as I always feel better while on it.
I am also glad to hear you don't have too many debilitating symptoms.
Also, TETANUS boosters/shots... Derailed me also in August of last year. Sent me back to square zero.
TETANUS shots are not good, in my uneducated opinion, but in my experience, for folks with weakened immune systems.
Not sure if it is because it is in a combo with other vaccines, live bits of bacteria, or the chemicals it is mixed with, but it sent me back months also.
Posted by Mystery (Member # 43798) on :
Greta, what did you eat as your meal with your Doxy doses? I ask cause while dairy is the source of calcium a lot of food has magnesium and iron and I want to avoid those foods also. For example, I eat a lot of eggs, and eggs have 4% iron per egg.
Posted by Lymetoo (Member # 743) on :
I wouldn't worry about the amount of iron in eggs. Eat them! For best results on preserving your esophagus and stomach, take the doxy in the MIDDLE of a good-size meal.
(and as Greta said, do not lie down for an hour afterward)
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